Aidan's Autism Adventures

Introduction: A Thinking Person's Guide to Neurotypicals

2012-02-02T17:16:00.000-06:00

A Guide to Neurotypicals -

For Those on the Autism Spectrum

Neurotypical: A term used by those on the Autism Spectrum to describe people who have typical neurological development and functionality.

There are hundreds if not thousands of books available to help “normal” people navigate and understand their family and friends who have Autism or Asperger's Syndrome. Neurotypicals know that people on the spectrum have issues with communication, social navigation, routine, sensory overload. When their child is diagnosed they're given guides and websites to try to help them understand. But what about those who are ON the spectrum? What are THEY given to help navigate a world that isn't made for them? How does a person with Asperger's or Autism understand a culture and language that isn't made for them? There are so many facets of neurotypical society that are just instinct for those who are “normal”. A neurotypical child learns body language and social mores simply by being a part of them. They learn how to lie and love and read faces and act “properly” with hardly any actual teaching.

The comparison has been made between a person with an Autism Spectrum Disorder and a person being dropped, with no warning or previous training, into a foreign culture. There is great frustration in learning not only the language but what certain gestures or expressions mean, social etiquette, things to avoid saying and doing that might offend or confuse. Add to that trying to understand what the locals are trying to convey who don't understand your language any better than you understand theirs. It can be maddening and overwhelming. The locals don't even notice the overwhelming sounds or smells of their city – they are accustomed to it and think that you, as a foreigner, are being melodramatic or even rude for commenting on your discomfort and asking for any adjustments to be made on your behalf. Their customs and traditions and humor are difficult to navigate at best and maddening at worst. But you have no choice. There is no option to leave. Some outsiders who enter this foreign land never do learn the language and are considered by the locals to be mentally deficient simply because they never did pick up the ability to communicate or understand the complicated traditions.

But more and more people are being diagnosed with an Autism Spectrum Disorder every day. The current statistic rests somewhere between 1 in 110 and 1 in 91. That's right around 1% of the population who is DIAGNOSED as having autism or Asperger's. This isn't including all those who are borderline, or whose parents didn't have the money, means, or awareness to take them to someone who could diagnose them. The numbers are steadily rising, and since we have no idea what causes it, the numbers will probably continue to increase. Not that it's necessarily a bad thing, so long as neurotypicals and those on the spectrum can learn to communicate. Obviously the next step is to provide a sort of road-map to the neurotypical world for those on the spectrum.

My plan, eventually, is to turn this into an in depth book that is easily accessible whether or not a person has internet readily available. For now though, I am going to kick off a condensed version here on my blog. I ENCOURAGE and ASK for lots of questions and input from my Aspies and Auties out there! Stay tuned as I push out what is hopefully some great information for those on the spectrum to function in a world too stubborn to accommodate them!

The topics I plan to cover are:

Herd of Humans (inability to be alone, social hierarchy, tradition, ritual, bullying),
Talking Without Words (non-verbal communication via body language, facial expression, and voice tone),
Nevermind what I say, you know what I mean (lying, figurative language, hyperbole, sarcasm),
Emotional vs Logical Beings (flighty, irrational, emotional, lack of focus)

Aidan's first semester of 1st Grade

2012-01-10T18:49:00.000-06:00

Aidan got AB honor roll last semester! He receives an award for it tomorrow. His weak spots are Reading and English, as well as some obvious behavioral issues.

He also had a STAR reading test, which is skewed by his receptivity to computer based testing of course. His Grade Equivalent for reading is 1.3 (so the first half of first grade), he's right in the average range with students his grade. His instructional reading level is still at the Pre-Primer level, but he's working on improving.

We also got the Annual Goal Progress report for his IEP. He's got a 2 in both progress and extent on both of his major goals (staying on task without interrupting or talking back, and tying his shoes).

Of course, we're VERY proud!

Other fun things - Aidan gets to earn a free pizza this month if he reads 15 books. He says he's going to read 16, but that we have to go buy more Magic Treehouse books for him. Also, between now and April he has to do his first science project. His will just have to be a poster explaining or showing his project. Hopefully he doesn't get too overwhelmed. I'm thinking weather (duh) will be the topic. I'll leave it up to him.

New Years Weekend

2012-01-03T16:26:00.000-06:00

So Aidan spent the night at his old babysitter's this New Years Eve. He stayed up till midnight playing video games and whatnot and then woke up the next morning, and according to him he ate cereal with dairy milk. Not sure which affected him more, the milk or the lack of sleep, or both, but he was whiny with an attitude as New Years Day progressed.

Yesterday we went grocery shopping (at 2 different stores because Aldi is cheaper but doesn't have everything we need). Aidan was getting into lots of trouble and being whiny and having trouble listening at Aldi, so I had him put his hood up (because stupid me, I forgot to pack earmuffs in my purse). When we got to Publix, he didn't act quite as badly as far as attitude but was VERY stimmy. He was humming and singing/babbling nonsense words loudly and hitting himself on the face.

Today he's been better. So hopefully he's caught up on sleep and the dairy is out of his system. I can't wait for school to start back on Thursday so we can have some time apart!

Christmas Lights and Humor

2011-12-20T21:05:00.000-06:00

Friday, Aidan's MawMaw and PawPaw asked him to come spend the night so they could go to the live nativity (which it ended up being too cold and wet for) and see the Dancing Lights (a neighbor's house where the lights flash in time with music piped through an onsite radio station), then make Christmas cookies. He did great and had lots of fun. He really loved the Dancing Lights and they watched them for 20 or 25 minutes until he said he was bored and wanted to go home.

Well, during the Dancing Lights, a part apparently comes on when you hear a few lines from The Santa Clause a la Tim Allen. MawMaw said to Aidan "That's Santa Claus!" Aidan frowned and said, "No, MawMaw, that's not Santa Claus. That's Buzz Lightyear!"

He's right.

Elopement - The Great Escape

2011-12-01T18:59:00.000-06:00

Not since he was around 4 years old has Aidan disappeared on us. I was at work, so I didn't have the joy of discovering he was missing or trying to find him. My mom had just gotten up and discovered that Aidan had gotten up before her and decided to let the dog out and then follow the dog out the door. Mom looked all around the house, all around the yard, and finally called 911 when she couldn't find him. He had traveled a block away, on a chilly morning, in a tshirt, diaper, and my mom's slip on shoes. A couple of construction workers had come across him and had called the cops. A neighbor who recognized Aidan tried to take him home but the men wouldn't let her until the cops arrived. 911 directed my mom to where the men waited with Aidan. We were lucky that nothing happened to Aidan. Lots of extra locks were put on doors after this close call.

Unfortunately, not every situation like this ends so well. Children with autism have a very high rate of "elopement" - not necessarily running away for any specific purpose, just taking off exploring or with a favorite destination in mind. "[A] wandering and elopement survey found that approximately half of parents of children with autism report that their child elopes, with the behavior peaking at age four. Among these families, nearly 50% say that their child went missing long enough to cause significant concern about safety." (Science Daily)

Could your child tell who they are or where they live or who their parents are if they were to wander off? The same study found that one third of children who elope cannot give this important information. Aidan couldn't - he wasn't even verbal at this point. Even now he couldn't give his address if asked, and isn't reliably able to give my phone number. And we've practiced it.

I don't worry as much about it now, but I used to lose sleep wondering if Aidan was going to try to wander off. And then I would in turn worry, since I had added so many locks he couldn't possibly reach, what would happen if there was a fire and he couldn't get out? Which becomes a priority? Even now, I want to tell him how to get out the window if there is a fire, but I worry if I tell him how he will take off in the middle of the night on a whim.

Locally, we now have Project Lifesaver, currently under the auspices of the Madison County Sheriff's Department. I don't see anything similar in surrounding areas, but I'm sure it could be worked out. "Project Lifesaver provides wristband transmitters at no cost to people with Alzheimer's, Dementia, Autism, Down Syndrome or other cognitive disorders when these people have a history of wandering and becoming lost. " There are similar programs throughout the US now and the average recovery time is around 30 minutes!

If there isn't a Project Lifesaver in your area, perhaps a medical alert bracelet (if your child will leave it on) can help with getting your child home if he or she does wander off. Preventing wandering to begin with is the hard part. I know for me it felt like (and sometimes still does for other reasons) I had to imprison my child and myself just to keep him safe.

Have any of you dealt with elopement?

Sensory Processing Issues

2011-11-30T16:39:00.000-06:00

If you follow us on Facebook, you know that a lot of Aidan's autism “symptoms” relate to his sensory issues. If it's too loud or his clothes feel wrong or the lights are flickering or food tastes funny or feels funny then we might be headed for a meltdown. Sometimes he'll scoot around on the floor with his head down or spin in circles. These are all manifestations of what is sometimes called “sensory processing disorder”. A child doesn't have to be autistic to have sensory processing disorder, but most kids with autism do have some form of sensory processing issues. A lot of the autistic child's “stimming” comes as a result of their difficulties with sensory integration. Repetitive or stereotyped activities (flapping, spinning, lining up toys, headbanging, etc) are often a child's way of fulfilling sensory needs. Meltdowns are a child's reaction to sensory overload in many cases.

Imagine yourself at work in an important meeting. The chair you sit in feels more like the wood plank park bench which pinches your bottom and is uncomfortable to sit on for more than a couple of minutes and the back just doesn't feel right. You have gloves on your hands which make it difficult to receive enough stimulation to be able to type or write correctly. There are bright lights shining and maybe even flickering in your eyes making it hard to see your boss as he tries to talk to you during this meeting. There is loud music coming from outside the room as the janitor cleans, and someone is crackling paper right next to you and a fly is buzzing around your head incessantly. It's super cold in the room so you're shivering. You took a drink of what you thought was water because your mouth was dry and it tasted like lemon juice and now your mouth is puckered because it tasted so bad. What did your boss just ask you to write down?! You have no idea because every sense is being inundated with too much input. Your boss fusses at you for staring at him like he has two heads and you try to explain but are so distracted the words just won't come out because you can't think of what you need to say. He begins to get more angry which only frustrates you more until finally you lash out angrily at him, and since you can't speak coherently it just comes out as violent screaming and babbling. This is a day in the world of a child with autism or sensory processing disorder. It might not always be this severe, some days are worse than others, but every little thing makes it impossible to focus and may even be painful. For Aidan it sometimes means he needs earmuffs or sunglasses or to avoid certain places (Lowe's and Logans for example) all together.

Other children are the opposite – they need sensory input because they are hypo-sensitive. These are the children who bang their head against the wall, flap their hands, make loud noises, spin around in circles, or other “hyperactive” or strange behaviors. They may have meltdowns because they feel like they are floating or some other strange sensation. Deep pressure therapy can help these kids, or a sensory swing.

Aidan has a combination of both hyper-sensitivity and hypo-sensitivity and they can switch back and forth on him with no warning. One day every little sound hurts his ears and distracts him and he has to speak loudly himself just to be able to hear himself over every other sound in his environment. The next day he needs auditory input and everything has to be at the highest volume possible. Usually he can't express to me exactly what sensory input or avoidance he needs. Some days I'm not sure if his behavior is typical little boy acting out or if it's fulfilling a sensory need. I've asked him before about spinning or crawling on the floor with his head down or not acting right at school. Sometimes he tells me that his brain was itching or he needed to get the mad out or some other strange response.

Sensory processing disorder may look very different from one child to the next. One person might have to have all the tags cut out of their clothing and only be able to wear sweatpants and socks with no seams. Another might have poor sensory awareness of his muscles and joints and be extremely “klutzy” or a “spaz”. Yet another might have little to no reaction to pain, cold, hot, or other tactile sensations.

There are different therapies for children with Sensory Processing Disorder, usually falling under the auspice of “Occupational Therapy” and quite often NOT covered by insurance since SPD isn't a recognized syndrome in the DSM-IV (the diagnostic manual used by psychiatrists), and autism is considered by most insurance companies to be an educational rather than a neurological issue. At Aidan's school they have a separate room called a “sensory room” which has dim lights, cool air, soothing music, and lots of sensory input toys such as a ball pit, scarves, beanbags, and a trampoline.

Does your child (autistic or not) have sensory processing issues? SPD Foundation has a checklist available on their site to help you determine if it's possible.

Next time you see a child acting out or strangely, stop and take a look around you. Could it be too loud or bright or could they be feeling hypo-sensitive and need more input? Don't assume that a child is misbehaving out of poor discipline or lack of attention. While this may be the case sometimes, making this assumption can be disastrous and hurtful not only to the child, but also to a struggling parent who is trying to finish an errand while not offending or annoying those around them who simply assume they have a naughty or spoiled child and are a bad parent.

How Weather Affects Behavior

2011-11-28T18:25:00.000-06:00

Most parents of kids with autism will tell you that changes in the weather have an impact on their child's behavior. When Aidan has a bad day I look back at whether he was sick, there was a change in his routine, if it was a full moon, and what the weather was doing. God forbid ALL of those happen at once. I have no idea if it's the rain, the change in pressure, some effect on his routine, or what the correlation actually is, I just know it's a fact, and Aidan's teachers and my fellow autism parents will back me up.

Strangely enough, I've found almost no research probing a connection between the weather and autistic behaviors. There is a condition called Seasonal Affective Disorder, but it doesn't matter what season it is for most of the kids I know; it can be summer-time and if there's a big storm system coming through, they are almost guaranteed to have some behavior issues, even if it's just stimming more than usual.

One of the few studies I found through Google explores the connection between rainy climates and autism prevalence. According to the study, “Children in California, Oregon and Washington are more likely to develop autism if they lived in counties with higher levels of annual rainfall when they were 3 or younger, suggesting that something about wet weather may trigger the disorder.” This could be because of the lack of sunshine, the increased exposure to television because of the inability to play outside, longer exposure to cleaning chemicals or other toxic substances, or the pressure changes inherent with weather systems which produce precipitation.

In 1898, Edwin Dexter, a Denver school teacher, became curious about how barometric pressure affected thebehavior of his students (neurotypical we can assume, since it's unlikely that autistic children were permitted in standard classrooms at this time) and studied 606 cases of corporal punishment over a 4 year period. He found that days with abnormal barometric pressure did in fact have a higher rate of behavior issues.

A 1990 article in Nation's Business discussed how the changes in weather affect us biologically. According to the article, which quotes scientists from The National Institute of Mental Health and Johns Hopkins, temperature affects our hypothalamus (the body's thermostat), sunlight alters the balance of hormones, and changes in humidity and barometric pressure affect our blood flow and therefore the amount of oxygen reaching the brain. The article stresses the fact that the amount of oxygen in the blood is majorly affected by the barometric pressure which affects memory, as well as the ability to deal with frustrations and minor annoyances. They note that when animals feel these effects of weather changes they tend to hide out in their den until they feel better, but when we feel these effects social needs demand that we try to continue to function.

Another study looked at in a 2004 issue of “Crime Times” (silly name I know!) found a connection between psychiatric symptoms and barometric pressure. The researchers documented both violent crimes, suicides, emergency psychiatric visits, and psychiatric admissions in Louisville in 1999, and weather conditions such as humidity, wind speed, and barometric pressure. They found a link between acts of violence and emergency psychiatric visits with the barometric pressure (none between suicide or inpatient admissions). Schory and his team noted that barometric pressure was associated with changes in cerebral blood flow, premature labor, and changes in certain endorphins related to depression. Their ultimate finding was that “"barometric pressure may alter the propensity toward impulsive behavior through changes in brain monoamines or cerebral blood flow."

Although the majority of these studies did not directly connect autistic behaviors and weather changes, they do all show that mood and behavior are affected by barometric pressure. If even neurotypical people have a difficult time pinpointing what is making them feel upset or easily frustrated, and children have a harder time with it than adults, how much MORE difficult is it for our children on the spectrum?! In addition, since we don't know exactly what makes our children autistic to begin with, and scientists are still exploring the biological and physiological differences that cause or are caused by autism, we have no idea to what extent changes in weather really affect our children and their behavior.

Communication issues prevent our children from telling us what is hurting them or how they feel, making it that much more frustrating for them when they feel poorly due to the weather. What if it gives them a headache, or drops their serotonin levels so they can't focus or are easily upset? Aidan couldn't even tell me his teeth hurt when he was cutting molars and having meltdowns daily. And he is VERY high-functioning and pretty verbal.

I have to ask myself if I'm just creating a self-fulfilling prophecy when I expect negative behaviors on days when the weather changes, or if I'm just being proactive and preparing myself to deal with the inevitable behavior problems that stem from changes in the weather. Considering that it's been raining for 2 days now and is supposed to snow tonight and tomorrow, I don't look forward to the behavior problems that are likely to come from the weather.

What links have you noticed between the weather and your child's behavior? Have you come across any studies linking the two?

Holiday Weekend

2011-11-27T16:48:00.000-06:00

Aidan's holiday weekend was great! They let out school early on Tuesday due to the threat of severe weather (which never happened), and for the most part it didn't screw with him too badly. He was a little hyper and messed with the dogs a lot that afternoon but no meltdowns or anything like that.

Krista (my little sister/adopted daughter - long story) and her husband, Ross, came into town Thursday morning and met us over at MawMaw & PawPaw's house for the holiday dinner. Uncle Matt was already there. Aidan's tummy was hurting (some constipation issues, which I hope will go away quickly since we've dealt with impacted bowels once before with him several years ago) so he didn't eat hardly any dinner. We all played games that evening and Ross let Aidan play with him, which Aidan REALLY enjoyed.

On Friday Krista & Ross came over in the afternoon and they hung out with Aidan, playing Battleship with him (Aidan won!) and legos in his room until about 5. Aidan loooooves his Krista - and she loves him back. Thankfully her new husband is great with Aidan as well. That night, Aidan got to spend the night at MawMaw & PawPaw's house which meant he got to spend LOTS of time with Uncle Matt (my little brother). They have a "mutual admiration society". Those two love each other more than anyone else I think. They spent the evening playing legos and video games, and the same the next morning.

Saturday afternoon Aidan got to go outside and play with his best friend Jonas. They apparently spent a good portion of the time "storm chasing" and even caught their first storm. I'm so excited to see Aidan's imagination growing and developing. It also makes me so happy that he has a friend who doesn't bully him and helps his imagination further develop.

Today Aidan has spent most of his day playing video games and watching TV. It's rainy, there's a cold front moving through, which usually affects his behavior pretty badly, so I'm letting him lay low and just relax. He's been quiet and not into any trouble for the most part today so we're thankful for that.

I really worry about the upcoming week since this past one was out of routine with getting out early on Tuesday and being out the rest of the weekend, plus the weather is changing big time. It was in the 60s or lower 70s yesterday and we're supposed to have snow Monday night/Tuesday morning. That's going to be an adventure...

Uh oh - you're too smart!

2011-11-22T14:14:00.000-06:00

A new study was released stating that the rise in autism might be linked to "clever parents" and that "couples who are both strong systemisers, for example, those who studied and works in STEM subjects (science, technology, engineerings and maths) and other fields related to systemising, are more likely to have a child with an autism spectrum diagnosis than couples where only one is a strong systemiser, or where neither is".

Right.

So I'm skeptical about this of course. But, assuming there's a grain of truth in it, I'd like to see the autism prevalence numbers here in Huntsville. We have the highest number of PhD's per capita, and the second highest number of engineers in the world last I checked. That's a lot of "strong systemisers" in one area, and I know that a large portion of couples here in this area are dual engineer marriages. If current national autism rates are hovering around 1 in 100, then what is the rate here? I wonder what we'd have to do to find out? I know MANY dual "STEM" couples who do not have kids on the spectrum. I'd have to find out how many of my friends who DO have autistic children have one or both parents in an engineering or related field. Your input would be awesome!

You Might Be an Autism Parent If...

2011-11-21T18:04:00.001-06:00

So for the last 24 hours on Twitter, the hashtag #youmightbeanautismparentif has been flooded with tweets from autism parents worldwide commiserating and joining in fellowship and camaraderie over what it means to be the parent of a child with autism. Here are some of my favorites:

You might be an Autism Parent If:

You detest the phrase 'this too will pass', because it WILL take forever to pass..and it WILL be back, again.
It's never easy to choose between telling your kid something ahead of time, & not warning them.
Your 8 yr old has mastered every level of Lego Star Wars but can't put on his own shirt w/out help.
You're not sure who needs the padded helmet w/ faceguard more...your kid, or you.
You know its a bad day when you find all the trains lined up
You have more people that understand you in other states and countries than in your own neighborhood.
You have to communicate in sequences....i.e. first brush teeth, then bedtime.
You get so excited when your child masters a skill that he/she is a year or more delayed in!
You know *just* how much silence is too much silence. And then you run to check on them.
You use the phrase "use your words" repeatedly throughout the day
Your son is 8 years old but still pees on his pants at least once a week.
Your child makes up un-funny jokes in an attempt to understand humor, irony, and metaphor - unsuccessfully.
The school staff hates to see you coming! Because they know you're not taking any crap when it comes to your kids!
You make up songs for almost anything because your kid responds better to it.
You have a heart attack when you see the school phone number on the caller i.d. Shit! What did he do now?
You've ever carried a screaming, flailing child out of a store & you knew it was for the best.
There are days you feel and look like a battered wife because your child had a major meltdown
You're accused of being overly protective of your child, and overly sensitive to popular culture!
Your kid has the hardest time telling you the simplest of things, but can turn Legos into amazing things with no plans
Your child tells a joke over and over until somebody laughs
Every activity you do comes with a series of warnings approaching the end of the activity.
You can't vacuum without a 15 minute warning announcement
You're sometimes amazed at the sounds and faces your child can make in a day!
You have had someone say "maybe if you were more consistent...." and you want to gut punch them
It doesn't matter how cold it is, your child WILL NOT go to sleep without the fan on in his room.
Anything "_____tard" is likely to not only offend, but infuriate you!
You start to realize the apple doesn't fall far from the...hey is that a squirrel?
You really relate to ' Gerald Mc Boing Boing'
Your twitter friends understand you and your child better than your local friends
You know exactly what a pooptastrophe is and are happy beyond words when your child outgrows this behavior.
Everytime ANYONE comes to your house your child tries to hijack them to come play legos with him.
You have to think through EVERYTHING you need to say first so that your child doesn't take something literally.
You sigh when other people tell you how their parents handled that when THEY were kids.
You've given a complete stranger a tongue lashing for suggesting your kid has a discipline problem
You're used to strangers looking to you for translation because they couldn't understand a word your kid said
You sometimes have to remind yourself there are a lot worse things that could happen to your child than autism.
You avoid public bathrooms because they are too loud and cause sensory overload.
People always question your child's behaviour and the way you raise your child.
You see no problem with your child scooting around on the floor with his head down for hours making weird sounds
You've apologized to restaurant staff because your child said the place smelled bad and you had to leave.
There are lines and lines and LINES of small toys all over the place
You know your child was given dairy milk at school because he's acting crazier than normal.
Your child refers to a friend as "The Third Boy" rather than by name even after a year.
You forget how delayed your child's speech is until you hear a 4 yr old talk better than your 8 yr old
You still get nervous before an IEP no matter how many times you've had one.
You dont even blink an eye when seeing a child twirling and flapping in public
You have to buy your child's favorite food in bulk quantities because anything else you buy will go uneaten.
You have the child locks on your car doors because your child has tried to jump out driving down the road.
Your 7 year old has designed 40 different versions of the Dominator from Storm Chasers
It makes you sick when other normal kids your child's age make comments or stare during an inclusive sport
You feel like a stuck record when asking a kid to do a simple as "put your jacket on"
You think a meltdown is something that happens to a child, not a nuclear reactor.
You get pissed at parents of neurotypical kids because they call you selfish for NEEDING A BREAK
Your child lectures you on the dangers of speeding as you drive them to kindergarten
You can tell the difference between a meltdown and a temper tantrum even when nobody else can
You have to explain EVERY step in the process. i.e. 1.raise hand 2.WAIT to be called on 3.answer.
Your child has 3 time frames - Today, Tomorrow, and Later.
You're afraid to put your child in sports because it could cause a sensory meltdown in public
You've ever cleaned poop off the walls of your apartment at 5am.
You plead with your child to be allowed to throw away the packaging
You've ever cried because a teacher "gets it"
You remarry and are super grateful that your spouse chose you and loves your child like his own.
You've ever wanted to strangle a neighbor kid for bullying your child but were too busy crying instead.
You've ever put special locks on your doors to keep your child from eloping.
The words, "he doesn't look like he has Autism" make you roll your eyes.
You don't even react to all the strange screeches, grunts, snorts, etc coming from your child.
You've got Meltdown Early Warning Radar
You want to cry when someone says, "He must be mild..."
You use the Nintendo or ipod as a muffling device when you know you're going somewhere overstimulating
You consider friends you've only talked to on-line as some of your most trusted confidants
You know the name of every Thomas engine.
You've wanted to strangle a parent of a neurotypical child who says your child just needs some discipline.
Some days you don't have much to say to "normal" parents.
There are three sets of rules on your fridge, including one your child made for the dog. (Rules are important!!)
You celebrate with a friend when her child eats two bites of pancakes!
You brace yourself for a tantrum when you inform your kid there's an errand you forgot, and wasn't on the list
You've left a full cart in the store and left because of a meltdown.
You consider twitter peeps you've never met, who have autistic children, some of your best friends.
Your child has beaten Lego Star Wars 3 times in the last year and he's only 7.
You watch a movie via your child mimicking it back at you instead of watching it on TV.
You get excited when your child eats something more than chicken nuggets and pizza.
You still bear scars from your child's last 3 meltdowns.
You carry earmuffs and sunglasses in your purse for your child at all times.
You get excited when your child swears because at least they said something.

I would try to credit everyone who tweeted these, but I couldn't even begin to try. So I'll just thank all the autism parents on twitter in general. You guys are awesome and I couldn't do it without your support and humor!

STAR reading report

2011-10-25T19:59:00.000-05:00

So apparently sometime this week Aidan took a "STAR Reading computer adaptive reading test".

His Grade Equivalent (GE) score was 1.3, which means that he reads at a level equal to that of a typical first grader after the third month of the school year. (Right on target!)

His Percentile Rank (PR) score was 61 which means that Aidan reads at a level greater than 61% of other students nationally in the same grade which is average.

His Instructional Reading Level (IRL) is "PP" which means "Pre-primer". Basically that he is at least 80% proficient reading pre-primer words and books. (Not sure what that means - what is "pre-primer"?)

His Zone of Proximal Development (ZPD) is 1.3-2.3 which means that he should be selecting books from that range (I'm guessing this means to pick books for first and second graders, although how I know what grade level a book is on isn't always clear).

So he's doing great on his reading skills! We're very proud because he got this AS WELL AS A HONOR ROLL this 9 weeks. What a smart cookie

First Nine Weeks! Success!

2011-10-20T17:15:00.000-05:00

We've had a few bumps in the road over the past few weeks, but we've successfully navigated the first 9 weeks of school. Today Aidan got his report card both for his general ed class AND for his IEP. Figured you guys would all want to know what's up with him so far!

So for his Annual Goal report based on his IEP, Aidan is making some progress and mastery is anticipated on both goals. Goal one is that Aidan would be able to stay on task for 15 minutes, not interrupt or talk back to teachers --- the report card says that "Aidan is able to stay on task for 15 minutes but has to be reminded to stop talking out of turn. We are working on not interrupting and talking back to the teachers." He is also working on tying his shoes without prompts, but he's having difficulty with the steps following making the first loop. We're still working on it at home and they're working on it at school, he's just struggling with it. I'm sure we'll have figured it out soon!

On his General Ed report card Aidan did great! HE'S ON A HONOR ROLL!!!!!!!! Congrats to Aidan! He's got a 92 in Reading, an A in Conduct, a 97 in Math, a 92 in English, a 100 in PE, a 100 in Art, and a 100 in Music! I'm super duper proud!

A couple of weeks ago Aidan also read 8 books in one day so he could get a free pizza. The kid is just too smart!

Oh, AND he got a 100 on his practice spelling test today so he doesn't have to take it tomorrow. But that's usually what he does. He's just that darn smart. So there. :)

Bullying - My fears and hopes as a mother

2011-08-28T00:21:00.000-05:00

I posted this on Facebook a while back, but somehow it never made it here.

A decade ago (well, more than that now, but close) we watched the horror of Columbine (and other tragedies like Paducah and Little Rock) where the result of bullying was the lashing out of those who were bullied so that they took the lives of others in their desperation. What did we do? We didn't stop the bullying. We didn't tell our kids how wrong it was or pound into their young brains (I was a kid then, Columbine was my junior year of high school) how much harm and heartbreak they were doing to those they bullied. It was never stressed how very wrong it was, or even what exactly bullying is. We were given mesh backpacks and told we couldn't wear black and made to walk through metal detectors and be watched by security guards and cops. We were taught fear, not tolerance.

At what point does "harmless fun poking" and "gossip" become bullying and defamation of character? When is it too much? We never taught that lesson. Even adults bully. We say bad things about even our friends behind their backs. I grew up being bullied. Not pushed around or cursed at or taunted, just shunned or snipped at, or worse nasty comments made when my back was turned or people thought I wasn't listening. It still hurts when I think about it, so I try really hard not to. It was so bad that even now, although people are nice to my face, I always wonder what they say when I'm not around - ESPECIALLY if they bad mouth other people behind their backs when I'm around.

Now, the result of bullying is no less tragic.

Instead of killing others, the victims of bullying turn their pain and anger inward. They cut, they cry, they ultimately kill themselves in way too many instances. The pain wrought by "harmless" words ends in the worst way possible. Never is a punch thrown, no kids are pushed down, half the time no mean words are ever spoken to the target's face. It's surreptitious, insidious, and devastating.

At what point do we teach kids better?!? My child has autism. He is disabled, and has a lot of difficulty with understanding social mores. Often he does strange things in order to cope with the world around him (Ear muffs at the grocery store? Roaring at friends when things are overstimulating him? Melting down for 45 minutes when he can't express his needs?). He is afraid to be around our next door neighbor's 9 year old daughter (or their son). He knows that she says mean things to him, calls him stupid, calls him baby, taunts him and tells him he can't play with her and her brother (who is Aidan's age). Where in the world did she learn this behavior? Considering that when I approached her parents about her brother's bullying of Aidan, we were only answered with "Well Aidan sometimes does stuff too". Wow. Really? The fear that the bullying will only get worse as Aidan gets older and kids get meaner terrifies me. I can't even bear the fact that he might have to deal with the bullying I did - or worse.

How do we teach kids what defines bullying and why it's so harmful? When do we finally get across to them that enough is enough, and not only should they not bully but they shouldn't stand by while someone is BEING a bully? How bad do the consequences have to be, how many kids have to die before we finally say ENOUGH IS ENOUGH?!

As one of those kids who was an "outcast" and never one of the "cool kids", I vow that my child will know exactly what bullying is and why it's wrong, and that he will be taught that it is NEVER acceptable, whether he's the one doing it, or someone is doing it to him or someone around him. Will you do the same and stop this endless cycle of heartbreak?

Is Different Wrong?

2011-08-24T22:40:00.003-05:00

I had a discussion today with a psych professor about autism and whether it was an atypical/wrong developmental path or just an alternate/different path. When there are more than 1 in every 100 kids who have autism, then is it truly atypical, or a sign that some children are just evolving into taking a different pathway through the developmental process? If we see the path autistic children take (or rather, paths) as negative and wrong and something to be altered or stopped, perhaps we're hindering their journey.

Ultimately the goal for any child is that they be able to function in society – socially, physically, economically, etc. Our job as parents is to give our children the tools to make that often difficult journey to adulthood and independence. Perhaps we need to take a step back from the situation. What if we approach autism as a different path rather than just a disability. I prefer to think of Aidan as different, not damaged. If I take into account the different path he's on, and try to ascertain what the differences ARE in that path, then I can give him appropriate tools for that particular path he's taking.

Aidan's big differences have been in speech, potty training, and social maturity. He stopped speaking around age 2 and stopped potty training as well, after normal and even accelerated development up until that point. It took him about two years to catch up and he's been about two years behind ever since. He's almost 8 years old and in first grade and that's a really big deal because he's made it this far. I think that as time passes that maturity gap will slowly grow smaller. Each child with autism has a different set of developmental differences or challenges. Actually, EVERY child has a different set of developmental challenges. Most of those challenges are predictable and acceptable and so we know what to do, based on others' experiences, to help the child along their developmental path. Speech therapy, physical therapy, occupational therapy and ABA therapy are tools for autistic children to meet those same developmental goals, but on their own path and timetable.

Same goal, different path. Is that really a bad thing?

20 Exclusion no-no's for teachers with autistic students in their mainstream classroom:

2011-08-03T18:30:00.001-05:00

School is starting back! For the kids this can be an exciting time, but if your child has autism both you and he could be a bit worried about what's to come this year - especially if your child is moving into a mainstream classroom! Aidan's going to be in first grade this year, starting out with an aide with him in the mainstream classroom all day.

Here are twenty "obvious" rules for the mainstream teachers out there:

Try not to use metaphors or sarcasm - “it's a piece of cake,” or “let's put our thinking caps on” are things don't make sense to me and it will take you a while to explain. Sarcasm is even harder to understand!
Don't make jokes about clumsiness or difficulty speaking, even with the neurotypical children – it can make me even more self-conscious.
Don't dismiss me as having nothing to say or refusing to participate or not paying attention just because I don't speak up.
Don't give long strings of verbal instructions. Offer one step at a time and make sure to give me written or visual instructions or rules no matter how “simple” the instructions may be.
Don't assume that because I refuse to look you in the eye that I have an attitude or am lying about something. Make sure neurotypical students understand this about their autistic peers. Don't force a child to make eye-contact!
Don't assume that I will understand the gist of your rules or be able to apply them in a different way to other situations. I think of rules as literal, to be specifically followed to the letter in the situation in which they were presented. Generalizations are often useless to a child with autism.
Try not to plan class parties or field trips in situations that are loud or noisy.
Don't focus on a my disabilities, focus on my abilities. Don't use words like “weird” or “strange” or “bizarre” to describe children or their appearance or behaviors whether they are neurotypical or not.
Don't make changes in the schedule or expect me to react calmly to changes in the day that happen without warning. If there are unanticipated changes, don't reprimand me if I do react negatively.
Don't judge a me or reprimand me for choosing to communicate with you or my classmates in a way that is not speaking out loud – for example writing notes or drawing pictures.
Do not rush me or speak over a me if I'm struggling to verbalize something. Give me time to put my thoughts together and don't try to speak FOR me unless I look for help. Don't assume it's not important if I'm not able to verbalize it.
Don't punish me for being truthful! Sometimes a child with autism will say something that is painfully true (Joey smells bad, Ms. Smith's hair looks funny, etc). Also don't punish me for speaking up when I feel something is wrong or I have reached my limit.
Make sure my classmates and I have a trusted person we can go to if we need to bring up a problem we are having with fellow students or even our teacher (this is the first step in stopping bullying!)
Don't point out the strange behaviors I may exhibit while upset or distracted.
Don't fill every inch of wall space with pictures or every quiet moment with music – every poster, scrape of a chair, squeak of the chalk/marker is one more thing for me to focus on instead of my work.
Don't become impatient with me for not reacting or responding immediately after you give instructions or ask a question - give me a little bit of extra time for absorbing what you said.
Don't assume that certain ways of acting or speaking are “common sense”. Children with autism have to LEARN things that come naturally to most people.
Don't offer open ended choices (What do you want to eat?) - instead offer closed-ended choices (Would you rather have a hot dog today or chicken nuggets?)
Don't JUST send a note home if I have a meltdown or hit another child and definitely don't WAIT to make sure my mom and dad know! Call that day and explain exactly what happened to my parents. Notes just don't give enough information and aren't urgent enough.
Don't move from one activity in the day's schedule into another without some clear transition. Tell me how long until the next activity, what the activity is, and what is expected of my classmates and me during the activity.

These are the rules I've got so far with help from the web and Twitter (I'm @thepyxie if you want to follow!). What do you have to add? Feel free to print these out and hand them over to your child's teacher along with your phone number and email address so you know you can always stay in touch.

Dietary Concerns

2011-07-27T14:37:00.001-05:00

This past week we had some “fun” with behavioral issues. Saturday evening we went to the grocery store, and of course took Aidan with us (normally Jeremy goes after work so that Aidan isn't with us – it cuts down on cost some and allows us to more closely examine labels because there isn't a 7 year old needing our immediate attention). He wanted some cheese puffs so without really considering whether they might adversely affect his behavior, we said sure, it would be a nice treat since he really was acting great at the store and had been great at dinner. The next couple of days were a wonderful mess of aggression, hyperactivity, attitude, and inattention. We removed the cheese puffs from the equation and last night and today Aidan has been great. We've seen this kind of thing happen before. In Rockford, on our trip to visit family, Aidan had ice cream twice in one day. It could have been the sugar, but much more likely was the milk since he has sugar in other things without adverse affects. Aidan was impossible for the next 24 hours. At school last year we didn't realize they were letting him have strawberry milk at lunch and for two weeks he was having major behavioral issues at school. Ms. Annie found out and we removed the milk and again, withing approximately 24 hours, his behavior was much more normal for Aidan. Similar situations have happened with both milk as well as artificial sweeteners. How many other issues that we didn't attribute to anything in particular have been caused by similar sources or by artificial colors or flavors or who knows what else?

Milk also causes tummy issues for Aidan – a couple of years ago we took him to the ER for what we thought was appendicitis and turned out to be an impacted bowel. We soon switched him to soy milk and started giving him Activia yogurt (I know, it's dairy and I think we'll look for a pro-biotic soy yogurt) to help with the tummy. I don't know if the milk directly causes the behavioral issues, or if it's actually the discomfort it causes in his tummy that maybe he can't communicate to us, but it seems like a pretty easy solution to remove it.

Should we try just a casein, artificial free diet? Should we do gluten free too? What does the research say? What other diet options are there – Feingold, Paleo?

We know dairy affects Aidan's tummy and his behavior – that's number one to remove. That means all casein/lactose products.

Casein has a wide variety of uses, from being a major component of cheese, to use as a food additive, to a binder for safety matches, paint, glue, plastics and fiber, medical and dental. (wikipedia)

Bad Ingredients:
milk solids ("curds")
whey
casein (sodium caseinate, most commonly)
lactose (sodium lactylate, frequently)
lactalbumin and other names that begin with lact
galactose (a lactose by-product) Most people with milk allergies will have no trouble with galactose, but you should be aware that it may cause problems in some people.
protein (often "high protein" or "protein enriched" version of another ingredient, such as wheat) The added protein in foods (particularly "high energy" foods) is often milk protein.
caramel coloring. Many kinds of caramel coloring use lactose, a milk sugar, to help get that rich color. When in doubt, do without.
Recaldent. This ingredient, found in some Trident brand chewing gums, is milk-derived.
Fruit flavored Tums contain undisclosed dairy. The original, white Tums are fine.
"natural ingredients". Some of these may contain dairy products or byproducts. Call the manufacturer (an 800 number is usually listed on the packaging) for further information.
and the obvious:
milk,
butter,
cheese,
yogurt...
canned tunafish. Many brands contain "hydrolized caseinate". However, the low sodium ones in spring water (such as Star Kist), and all of Trader Joe brand tunafish, appear to be milk free.
chicken broth: Any form, including canned and bouillion. Many brands contain milk solids.
sour mix, such as what is used to make margaritas, or other artifically "sour" items such as some candies.
Coconut milk powder (dried; not to be confused with canned coconut milk in liquid form). Every brand I've found to date contains casein, milk or cream.

Gluten (from Latin gluten "glue") is a protein composite found in foods processed from wheat and related species, including barley and rye.

It is used as a food additive in the form of a flavoring, stabilizing or thickening agent, often as "dextrin". http://en.wikipedia.org/wiki/Gluten-free_diet Several grains and starch sources are considered acceptable for a gluten-free diet. The most frequently used are corn, potatoes, rice, and tapioca (derived from cassava). Gluten is also used in foods in some unexpected ways, for example as a stabilizing agent or thickener in products like ice-cream and ketchup. The standard gluten-free diet does not meet the recommended intake for fiber, thiamine, riboflavin, niacin, folate, iron, or calcium

http://www.urmc.rochester.edu/news/story/index.cfm?id=2860 The GF-CF (gluten free, casein free) Diet is a popular autism diet not shown to demonstrate behavioral improvement. (wikipedia)

The Feingold diet is a food elimination program developed by Ben F. Feingold, MD to treat hyperactivity. It eliminates a number of artificial colors and artificial flavors, aspartame, three petroleum-based preservatives, and (at least initially) certain salicylates.
synthetic colors (FD&C and D&C colors) (made with petroleum)
synthetic flavors (several thousand different chemicals)
synthetic preservatives (BHA, BHT, and TBHQ)
artificial sweeteners (Aspartame, Neotame, and Alitame)
During the initial weeks of the program, certain foods containing salicylates are removed and may later be reintroduced and tested for tolerance, one at a time. Most of the problematic salicylate-rich foods are common temperate-zone fruits, as well as a few vegetables, spices, and one tree nut. During this early period, foods like pears, cashews and bananas are used instead of foods like apples, almonds and grapes. (wikipedia)

Do I need to really be aware of all of these? How much casein/milk product or relative is too much? Obviously Aidan isn't ALLERGIC to milk or any of the things listed. He doesn't get hives or have difficulty breathing or any major symptoms. But if it affects his behavior it still seems like a good idea to remove it from his diet if it can help him to function better at home and school.

Things Aidan loves that would have to be removed or altered with the casein free diet and the removal of artificial colors and whatnot:

Pizza,
ketchup
ranch dressing
yogurt
pop tarts
certain cereals
macaroni and cheese/shells and cheese

If we did gluten free it would become even more complicated so I think that would be a last resort. In fact, mom pointed out that some studies show that a gluten free diet could be harmful to someone without celiac disease or a wheat allergy.

Summer Vacation Trip

2011-07-06T18:43:00.000-05:00

We went to Rockford this past week and Aidan had a blast! He got to:

Ride a trolley
Blow the trolley whistle and ring its bell
Climb on and around trains at the Illinois Railway Museum
Visit his Great Grandparents
Drive Great Grandma's scooter
Ride an airplane
FLY an airplane
Ride on a boat
Jump off a boat and swim in the middle of the lake
Drive a boat
Ride a four wheeler
Ride in a canoe
Paddle a canoe
Light fireworks
Roast marshmallows

Wow! What a week! It was a wonderful visit with Poppa, Grandma Holly, Auntie Arian, Auntie Mimi, Uncle Chris, and his many cousins (Autumn, Cody, Dani & Addy). He was super great for the 11 hour ride up and the 11 hour ride back, plus all the in between trips here and there.

We did have a couple of close calls as far as his autism. At the train museum he got super hungry and overstimulated and tired, and almost had a meltdown before we were able to get him food. Also, he had ice cream twice in one day and the dairy affected his behavior quite a bit – have to plan better next time! The only other really close call was the last day, visiting Great Grandma and Great Grandpa at their apartment. Aidan was at the end of his rope, tired and overstimulated and homesick. He started pushing and pulling and spinning Poppa's chair and after many times of being asked to stop, I asked him to come with me to the hall so we could talk. Aidan ran away and went in Great Grandpa's office where he proceeded to have a mini-meltdown (aggressive, stiff, arching his back, growling, nonverbal). We got him calmed down, gave hugs and left. Otherwise, it was an all in all awesome trip! Hopefully we can do it again soon. I know Aidan had a blast!

Bullying Act 2

2011-06-21T23:44:00.000-05:00

I'm so sick of bullies. So very, very sick of bullies. And having been bullied, I have this irrational fear that if I go talk to the parents of the bullies, then I'll have to deal with bullies of my own. That's a whole other problem though. Anyways, it looks like we have a street gang: 4 boys, ages 10-12, on bikes who roam the neighborhood as “police” (according to the girls who blew the whistle on them earlier today) bullying other kids.

Earlier today, Aidan had gone outside to play. I guess the boys down the street ran across him and started playing with him. He plays with one of the boys, Brant, fairly frequently and Brant seems pretty nice. He's ten. About 20 minutes after he'd gone outside to play (he'd been playing on his scooter out front and then came in about 10 minutes before to ask if he could knock on the neighbor's door to see if they could play) the dogs started barking so I went to go see what was going on. A little girl probably 10 years old was coming up to the door so I opened it and she told me that Aidan was being picked on next door (between the house next door and the next house down). Jeremy was just getting home so he parked his car and came down there with me. Of course as soon as we walked up, before we could see what was going on, they boys stopped everything. I asked them what was going on and at first they all started talking. Then, Brant stopped them and said that it was just him and that he had been play fighting with Aidan. It seemed apparent from the other boys' faces that he wasn't the only one and that some information was being left out, but we just fussed at all of them and asked them whether they enjoyed picking on younger kids and what would their parents say. The other boys were kind of smirking, but Brant looked like he was about to cry.

At that point we were working on dinner and so we came inside and worked on it some more, but Jeremy saw the girls riding around again while he was working out in the garage so I joined him when I noticed him talking to them. They told us that two of the boys are brothers to the girl who beat Aidan up last time, one of which I think might have been taking pics that day. Interesting. They said that Brant's older brother beats him up and when Aidan was getting picked on, that Brant was actually trying to stop them from hurting him and they were pushing him down. I have the feeling that the reason Brant said he was to blame was because he was afraid he would be bullied later if he didn't lie about it. The girls also seemed worried that the boys might bully them because they told on them (which was very much the right thing to do!) Aidan said that one of the boys had him up in the air and was about to body slam him (the girl who alerted me to the bullying said this too).

I'm so frustrated. I think Aidan has a hard time understanding the difference between activities that are just playing and activities that are bullying or are leading to bullying. The only time he knows for sure is when he's already been hurt. The girls said these kids are home alone in the afternoons (at least Brant and his brother are for sure) so it makes it a challenge to talk to their parents. I'm really super tired of this happening. Where do kids learn this crap and why do they think it's okay?

A Second Job?

2011-05-22T15:18:00.000-05:00

We all know that Aidan wants to be a storm chaser when he grows up. This has been his dream job for the last 2 years at least. He keeps up with the weather, and wants to go out driving every time he hears thunder. I'm cool with this - it's dangerous but a good goal to have and he gets to have lots of education and interesting experiences and a chance to make a difference. He hasn't changed his mind since the tornado outbreak on April 27th - if anything he wants to even more.

The other day though, Aidan told me he wanted to be... wait for it.... a lunch lady when he grows up. What?! Yeah he said he wants to serve food in the cafeteria at school. I told him I thought he wanted to be a storm chaser and he said, "Yeah - I'm going to have 2 jobs." Then later, "Spiderman has two jobs..."

Wow. Okay, whatever works for him I guess.

April 27th, 2011

2011-05-04T20:15:00.000-05:00

For those of us in Alabama, April 27th was a day we will never ever forget.

I woke up to the sound of tornado sirens around 4am and didn't go back to sleep. Aidan went into school late because of tornadoes in the morning, and then was released from school early. Around 11:30am, Ms. Annie from the autism unit called me and asked if I wanted to go ahead and come get Aidan because it was hectic at school and he was very overstimulated. I told her that I would rather wait, and it's a good thing I did. Less than 5 minutes later I was camped out in the hall as an EF-1 tornado passed over us. I finally went to get Aidan around 12:15, about 20 minutes before we were once again hit with a tornado warning. When I got there, power was out at school, it was pouring rain and lightning like crazy so I shoved Aidan in the car and we headed home. We'd already had hail once in the day and I didn't really want to be caught in it, so it was good that we got home when we did.

We spent most of the afternoon in and out of the hallway. Aidan was hyper, excited and probably a little confused by all the tornado warnings. I'm sure he could sense my anxiety over the outbreak of severe weather. The meteorologists had been warning us all week of the weather we would face on the 27th - there wasn't just the possibility of tornadoes, but it was very probable that we would have several strong, long tracking tornadoes.

Around 4pm I called Aidan's daddy and told him to come home right away. A huge tornado had just ripped through a town an hour or two to our southeast and was barreling our direction so I wanted him to make it home before the tornado hit. Tanner, a town where a friend of mine grew up, and only a few miles down the road from my college got slammed into by the large tornado. Jeremy got home and we looked at the sky outside which was the most eerie shade of pea-green before hurrying into the hall in the center of the house with blankets and pillows and puppies. As the tornado passed, we had no idea that just a mile away houses were being torn into pieces and high tension power lines (the big metal ones) were being crumpled like they were made of aluminum foil. Aidan was visibly frightened as we listened to the TV turned up loud and telling us how serious the situation was.

We had to run errands Thursday, the day after the storms, which was gorgeous. We had to pass through affected areas in order to get to a store that had power so we could purchase the things we needed (we miraculously never lost power at our home and became a place for those without power to take hot showers and eat hot meals and do laundry and charge their electronic devices). I was stunned to see the wreckage and just how close it was to my home. Even now, I have a hard time wrapping my head around just how blessed we really are, and when I think of my friend who lost his father and step-mother, I wonder what I would have done had I lost my parents or worse Aidan? What would have happened if I had lost my life protecting Aidan from the tornado as Roger's parents lost their lives protecting their grandchildren?

I showed Aidan pictures of the wreckage after we came home from running errands, and he kept exclaiming how "cool" it was. I knew this wouldn't do so we ended up taking him to see in person just how bad things were. Although he's only seven, I felt that since he wants to be a storm chaser, he needs to understand just how serious a tornado is. We explained that these people lost EVERYTHING, and that some of them died or were hurt very badly. Aidan got very quiet and seems now to really understand. I think he still wants to be a storm chaser.

We are very blessed to have survived this ordeal and our hearts and prayers are with those who lost everything. I encourage you to donate to the recovery efforts - here is a link to the Salvation Army's donation website where you can specify that you want your donation to go to the Limestone and Madison County communities affected by the April 27th tornado outbreak.

Thank you for your thoughts and prayers.

I'm Doing the Best I Know How - Aidan's story

2011-04-13T16:33:00.000-05:00

I posted this on my Facebook page back a couple years ago, but I don't think I ever posted it here. Here's the story of Aidan's autism:

In August 2008, my son Aidan was diagnosed with a disability known as autism. Officially he has what is called PDD-NOS or Pervasive Developmental Disorder Not Otherwise Specified, which means he has atypical autism. He hadn't even turned five years old yet. In some ways it was a relief - it was good to finally know why my beautiful, smart, smiley, talkative, almost potty trained little boy had suddenly stopped talking, potty training, and began having regular meltdowns with little or no warning or reason. I faced a lot of that horror by myself - my husband at the time was away with the military, and then we moved to Texas and he was busy otherwise. I had no idea what I had lost my baby to - they said he had good hearing so it wasn't that, but no good reason could be given for his regression. Finally, a year after leaving my husband and moving back to Alabama, Aidan's pediatrician referred him to the TRIAD clinic at Vanderbilt University, which specializes in diagnosing, researching, and assisting with helping to recover from autism. Dr. Warren spent 4 hours with Aidan, playing with him and talking to him, all part of a battery of tests that helped him finally determine what we had feared - Aidan was autistic.

When someone gives you news like that, even when you have your family there with you, it's completely overwhelming. Like getting caught in an undertow. And there is so much information they give you about what autism is and why it might have happened and how you can maybe reverse some of the symptoms. You start trying to get in touch with all these people to get help for your child, and in so many cases they don't help or can't help or won't help. I struggled with the schools and got turned down by the Social Security Administration and wondered why speech therapy and occupational therapy and behavioral therapy weren't covered by insurance. I began investigating whether I should start refusing to allow my son to be vaccinated, whether I should change his diet to one without gluten or casein or sugar or strawberries or blueberries...

And no matter how much you explain to people that your child is autistic, and what that means, they really don't seem to get it. When he has a meltdown in the middle of the floor because you told him no, people just assume you have spoiled your child and are letting him manipulate you. What they don't realize is that the reason your child is so out of control is because on top of being in an environment where every sound, every light, every touch is more than he can handle, you've just changed something on him without properly setting an expectation and his brain, the way it works (or doesn't work) can't handle it. He literally can't maintain control of his own behavior. And it isn't always easy to know what will trigger him, because even though he's five years old, he doesn't talk well enough to tell me what's going through his little head or that he's feeling completely overwhelmed.

When you choose to quit your job to stay home with your little boy because you feel that's the best way for him to continue making progress, it's a bit of a slap in the face when people look askance at your choice. I'm doing what I know is best for my son. I can't afford to pay a professional to give him speech and behavioral therapy, and once a week or an hour every other night before bedtime won't do him a bit of good. I don't know what I'm doing of course, so I have to research and learn to be a speech therapist and teach my child how to read faces and non-verbal social cues. I have no idea if changing what he eats will help him, or if it's a good idea to possibly make him vulnerable to deadly diseases in order to prevent him any further regression from a vaccination.

It's SOOO frustrating to try to help your child when even DOCTORS haven't a clue what causes autism, what triggers it, how to treat it or whether a child can ever totally recover from it. I'm trying to be brave and take it one day at a time. And I literally have people who will tell me that I am a bad mother because my child sometimes talks back or throws fits or doesn't eat the healthiest food. They don't understand that an autistic child doesn't always understand that when he echoes a phrase he's heard another child use or when he uses the tone he's heard an adult take with another adult that it is socially unacceptable. They don't get that I don't LET my child throw fits, I just can't always stop one once it's in motion. They don't see that there are days when if I want my child to eat anything, I let him eat whatever he's willing to put into his body and hope that I can balance it out with something else later in the day or week.

And yes, sometimes I need a break from Aidan. And yes, sometimes I am angry that my child is autistic. And yes, some days I question my decision to have a child (which wasn't planned, but every woman has alternatives when she finds herself pregnant). But know this and NEVER question it: I love my little boy with ALL my heart. I would not give him away. He is an amazing little boy who has worked VERY hard to recover from his disability and has made such great progress. He is so smart and wants so bad to make those around him happy. He has bad days, but he also has very good days which more and more often outnumber the bad days.

Thanks to all of you who have supported me as I raise Aidan and we defeat autism together. Especially Jeremy and my mom who have provided so much help and love that I am forever in their debt.

For more information about autism go to www.autism-society.org

Meltdowns 101

2011-04-07T20:46:00.000-05:00

A lot of people outside the autism community seem to be confused or misinformed or uninformed about meltdowns in autistic children (and adults for that matter). I know that when Aidan has a meltdown, I make myself stop and say “Okay, is this a meltdown or just a tantrum?” It's usually pretty easy to tell the difference. Sometimes a meltdown will start as a tantrum but devolve into a meltdown, usually because Aidan's communication skills aren't enough and he gets frustrated, or because whatever caused the tantrum was just a trigger for a meltdown (like the straw that broke the camel's back – more about this later). A meltdown can happen for any number of reasons, and it's often difficult to tell what that reason is – I try to go back after an unexpected meltdown (it's not possible to do so DURING) and figure out what triggered it. If and when possible I'll try to defuse the situation before the meltdown happens, but this isn't always possible. Just like the bombs on television always have digital clocks on them, all autistic kids have bright, easy to see, obvious warning signs, right? Wrong. Sometimes I can see it coming, but unfortunately it's usually too late by the time I do.

What does a meltdown look like?

For Aidan, a meltdown may start with a very aggravated look on his face, widened eyes, clenched teeth, and balled up fists. He'll often growl at me or grunt, and usually at this point is beyond speaking to me, especially not to tell me what's wrong. This then progresses beyond aggression into violence – at this point if I look at his eyes, it's almost like Aidan's not in there at all, he's been taken over by this crazy little rabid animal for the time being. He begins screaming at me and then attacks me. I can try to walk away or place him in his room to do his thing by himself, but inevitably Aidan will pursue me. He will punch me, scratch or claw me, kick me, throw whatever is available at me, headbutt me, and attempt to bite me. His whole body is completely tensed up, his back frequently arched. He's chipped my teeth, broken Jeremy's glasses, damaged his own toys, thrown furniture, and always leaves claw marks and bruises all over me. It can last anywhere from 5 minutes up to an hour (we've never seen one longer than that, thank goodness, although he has had multiple meltdowns in one day). A meltdown doesn't stop as suddenly as it starts. Eventually Aidan slowly calms down, stops hitting me or trying to hurt me, moves from screaming and growling into crying and sobbing, and his body relaxes. He'll hide his eyes at this point, a lot of times he'll cover his ears, and sometimes he'll let me rub his back but usually he doesn't want anyone to touch him. If I try to talk to him about it, it's going to either make him cry harder or ramp the meltdown back up. He's usually very very tired after a meltdown and doesn't talk much at all.

What causes a meltdown?

Often a meltdown seems like a mystery. There are any number of triggers for a meltdown, and what may seem to be the cause of a meltdown this time, might not so much as phase Aidan next time. Or something that never bothered Aidan before suddenly sets him off unexpectedly. This is a pretty good sign that what set him off was a trigger but not the cause. Think of it like the old metaphor of the straw that broke the camel's back; a combination of sensory overload, physical discomfort, frustrations, disappointments, or surprises comes together to confuse Aidan's brain and he doesn't have the vocabulary or self-control to handle it calmly or at least ask for help to fix the situation. Sensory overload for Aidan is usually sound related, although it can be lights or any number of other sensory input – think of it kind of like how a strobe light can cause a seizure. Physical discomfort we've discovered after the fact has been from toothaches, tummy aches, sore throats, and even from being given milk at school (his tummy is very sensitive to milk products). Frustrations could be caused by a game not working for him or a friend not doing what he wanted or expected. Also, Aidan has a very strong sense of “justice” which isn't always logical, but if you punish him for something that he feels was not wrong or that he wasn't told there was a rule against, he will go into a tail spin.

Can't this just be “disciplined” out of him?

If Aidan is just throwing a tantrum, or if he's winding up toward a meltdown but still has some control over his behavior, then yes, discipline or even distractions can help the situation. But if Aidan loses control over and unmet need or discomfort, and I punish him instead of figuring out what his problem is, then I'm only going to make Aidan even more out of control. Basically I'm punishing him for trying to communicate that something is wrong in the only way he knows how at the moment. Some days his verbal skills are worse than others. Especially if Aidan is fighting off being sick, his ability to tell me something wrong can be diminished by various factors, and if I try to punish him into acting the way I want him to, I'm just going to make things worse.

So what do I do now that I know?

For a long time I had no idea whether Aidan was having a tantrum or a meltdown. I would try to punish him and only make things worse. Without the experience I have now with Aidan, I wouldn't know what to do in the event of a meltdown. Now, if I judge that Aidan isn't throwing a tantrum but has completely left the building when it comes to his ability to control his behaviors, then my only option is to make sure he's in a safe place (out of reach of things that can get broken or could hurt him), and try to restrain him enough to keep him from hurting himself or me. It's exhausting for everyone involved, and god forbid it happens in public. I think the hardest thing to explain to people without experience in the world of autism, is that aggression and meltdowns and the behaviors associated with them, are not signs of a spoiled or bratty child, or of bad parenting – they are simply symptoms of a disorder.

I invite your questions, comments, and suggestions (so long as they are constructive and in the spirit of learning and cooperation).

Visiting the Principal

2011-02-16T15:35:00.000-06:00

Today I had to go talk to Dr. Lewis (the principal) is because Aidan punched and hit a little girl, and apparently this is the 3rd time he's done it this school year, so for liability reasons, they had to talk to me about it. Aidan won't say a lot about what happened or why, and he had a meltdown from the door of the school until about 5 minutes after we got home. If this doesn't get settled, we'll have to do a new IEP to try to deal with this aggression and occasional violence.

This has been going on (this go round) for about 5 days now. I'm not entirely sure when it started (I'd have to go back through my facebook and tweets to determine the first meltdown of this cycle), but I know Sunday he had a major meltdown out of the blue, and then got beat up by a little girl while two little boys looked on and one took pictures. He's had meltdowns and been very aggressive and easily upset since then.

One thing I noticed today is that the yogurt we got him (he always has Dannon Activia because of past problems with his tummy) was actually Light, which means it has artificial sweeteners in it. I wonder if this has anything to do with the problems he's having. I'll definitely be cutting that out and throwing the rest away.

But the problem with hitting the little girl isn't a recent problem apparently. I'm not sure when it started, but it apparently didn't just start this week, so I don't know what to think about that. They didn't give me a whole lot of information. Ms. Annie wasn't there to see what happened, Ms. Simmons probably wasn't either since it happened in P.E., and the Coach didn't come to the meeting with Dr. Lewis to tell me what he saw. So we're depending on Aidan to tell us what happens, and he always gets very agitated and frequently melts down when you try to extract information from him about what happened in a situation like this.

I literally have NO IDEA WHAT TO DO in this situation. Back in September-November he had problems like this too, although they weren't manifesting at school, only at home. I wish I had some more resources with what to do. Insurance, even Medicaid, doesn't frequently pay for autism therapy, but I'm going to try to go soon to the mental health center and try to get him an appointment to maybe talk to a counselor or something. Any other suggestions would be greatly appreciated.

Another encounter with Bullies.

2011-02-13T18:37:00.005-06:00

Earlier today Aidan had an encounter with Bullies. I wrote about it on Facebook and some on Twitter, so I'll just compile it all here for everyone, and for the general record.

Around 3:30pm -

"OMG WTF! SOME KID DOWN THE STREET JUST BEAT AIDAN UP!!! She punched him several times, and he has an abrasion on his face and ear. He says he doesn't know why, that he didn't hit her or say anything mean to her.

He said she pushed him down and punched him in the face and the head and legs, and pulled his ear. He couldn't tell me what words she said. I'm so upset right now, angry and sad that this could happen to my child. I don't know what to do.

He says that there were three kids - the little girl was the one hitting him and one of the other kids, an older boy, was taking pictures. He said he's never played with them before, but that once they tried to break his scooter."

A couple of people made suggestions:

"Well I suggest you talk to her parents, prob better after you calm down. If that doesn't get anywhere, contact the police."

"ugh I hate bullies. I'm so sorry! maybe take pictures of the injuries..?"

I responded:

"I don't know where the kids live - and I am sure that if their parents are anything like the other parents in the neighborhood then it will just come down to a case of he said-she said. It's happened before, although never before has a kid punched him."

And then about half an hour later:

"Are you freaking KIDDING ME?! The kids just came back down here and asked if he could come back out and play. I asked them what happened...It didn't match up to Aidan's story at all, except that they were playing with lightsabers. I told them he couldn't play anymore with them.Why would he say she punched him with her hands if they were just "playing at hitting each other with lightsabers"?"

To which I received several responses from friends:

"If the kids are still out there, go ask them where they live. For Aiden's sake, the least you should do is talk with the parents."

"I don't think your child is a liar. I DO think you need to take pics of his injuries & set up time to talk w/ other kids' parents. Aidan doesn't make stuff like this up. Sounds like the 3 kids were tormenting him & if there are pics on their cameras it's proof."

I said:

"We don't know what house they live in, and the kids are gone now. I wish Jeremy were here, so we could find out. I don't do well in situations like this. I'm not sure all the kids are even related."

"I don't know - they acted like they didn't know what I was talking about when I asked about that. I'm sure they deleted them."

I'm not entirely sure of the whole situation. I don't know the whole story - Aidan told me what he could, and it's entirely possible he was playing rough and left something out, but I still think it was inexcusable for her to punch him and for other kids to take pictures. It's not just Aidan - he gets along fine with Jacob and Jonas and Briley and her brothers, as well as the kids at school. The only problems I've really seen are with the kids today and the next door neighbor kids who are very verbally abusive. I'm still very upset over it, but Aidan seems to be okay for now. He definitely will not be playing with those children again.

DIBELS (What the heck is that?!)

2011-02-03T16:17:00.003-06:00

DIBELS is an acronym for Dynamic Indicators of Basic Early Literacy Skills. According to their website,

"The Dynamic Indicators of Basic Early Literacy Skills (DIBELS) are a set of procedures and measures for assessing the acquisition of early literacy skills from kindergarten through sixth grade. They are designed to be short (one minute) fluency measures used to regularly monitor the development of early literacy and early reading skills.

DIBELS are comprised of seven measures to function as indicators of phonemic awareness, alphabetic principle, accuracy and fluency with connected text, reading comprehension, and vocabulary. DIBELS were designed for use in identifying children experiencing difficulty in acquisition of basic early literacy skills in order to provide support early and prevent the occurrence of later reading difficulties."

We got Aidan's DIBELs results back today from the testing in January (they also tested in August, and I imagine they'll test again sometime between Spring Break and the end of the year. If you'll remember (or maybe you don't), last year when they did DIBELs at Creekside it threw Aidan's schedule off so bad he never did recover. This year he seems to have handled it much better.

The first area they scored him on was "Initial Sound Fluency"

("The examiner presents four pictures to the child, names each picture, and then asks the child to identify (i.e., point to or say) the picture that begins with the sound produced orally by the examiner. For example,"This is sink, cat, gloves, and hat. Which picture begins with /s/?" and the student points to the correct picture. The child is also asked to orally produce the beginning sound for an orally presented word that matches one of the given pictures...").

In August he scored above the target goal which was 10-15 correct letter sounds, by identifying approximately 25 initial letter sounds. As of January 14th Aidan did so well he scored above graph bounds!!! That's right! Target goal was to identify 25-35 initial sounds, and he identified 74 (top of the chart was 70).

The next portion of the test was "Phoneme Segmentation Fluency"

("assesses a student's ability to segment three- and four-phoneme words into their individual phonemes fluently... has been found to be a good predictor of later reading achievement... administered by the examiner orally presenting words of three to four phonemes. It requires the student to produce verbally the individual phonemes for each word. For example, the examiner says "sat," and the student says "/s/ /a/ /t/" to receive three possible points for the word...").

January was the first time he had been tested for this, and the goal was to identify 20-25 correct phonemes. Aidan scored well above this target by identifying 60 phonemes.

The third and last thing they tested him on was "Nonsense Word Fluency"

("The student is presented a... sheet of paper with randomly ordered... nonsense words (e.g., sig, rav, ov) and asked to produce verbally the individual letter sound of each letter or verbally produce, or read, the whole nonsense word. For example, if the stimulus word is "vaj" the student could say /v/ /a/ /j/ or say the word /vaj/ to obtain a total of three letter-sounds correct. The student is allowed 1 minute to produce as many letter-sounds as he/she can, and the final score is the number of letter-sounds produced correctly in one minute.... students should receive a higher score if they are phonologically recoding the word, as they will be more efficiently producing the letter sounds, and receive a lower score if they are providing letter sounds in isolation. The intent of this measure is that students are able to read unfamiliar words as whole words, not just name letter sounds as fast as they can.")

This had also not been tested before January, and the goal was to produce 20 correct letter sounds. Aidan achieved just above the targeted goal by correctly producing 33 letter sounds.

I'm so excited that Aidan has done so well on the DIBELS test this year. Obviously his reading skills have vastly improved. Ms. Simmons says he does very well reading in her class, and he seems much more interested in books and reading at home now that he's got a better understanding of how words work. I can't wait to see him continue to learn and improve.

New Year, New Rules

2011-01-31T11:25:00.000-06:00

So the year started out rocky. We've been in and out of school thanks to snow and sickness. Of course, any change in routine really messes Aidan up, so we've been struggling somewhat to have good days. Overall though, it's been a really good year. We got back Aidan's annual goal progress report which allows us to see how well his IEP is working for him and what kind of progress he's made toward his goals this year (hence the name...). We had two major goals.

Goal: By the end of the 2010-2011 school year, Aidan will exhibit appropriate social skills by controlling his excitement, using an inside voice, asking for a break, and staying seated 8 out of 10 times.

As of 10/08/2010: Some progress had been made, and mastery was anticipated: "He loves being in Kindergarten! He has been asking for breaks and controlling his excitement. He has his days but the General Ed teacher reports that he has done great!"
As of 12/17/2010: Some progress has been made, and mastery was anticipated: "Aidan is a great typical Kindergarten boy. He is using an indoor voice, asking for breaks, and staying seated. We are working on him listening and staying on task. He loves to make friends. We are working on the dos and don'ts of how to play with friends and not get in trouble.

Goal: By the end of the 2010-2011 school year, Aidan will improve his basic living skills by demonstrating the ability to fasten and unfasten small button closings on his clothes and tie his shoes and write his numbers 1-10 in 3 out of 4 trials.

As of 10/08/2010: Some progress had been made, and mastery was anticipated. "He is able to fasten his buttons and clothing. We are working on tying a knot on a shoe. He is doing great in writing his numbers but has to be reminded to slow down and write smaller."
As of 12/17/2010: Some progress has been made, mastery is anticipated. "Aidan is working on tying his shoes, he is able to zip up his own jacket. He is able to write his numbers when he is on task and focused. If he is not focused, staff will make him redo his writing and he does very well the 2nd time."

So all in all a very good report. We're excited to see that he's doing so well and enjoying his second go at kindergarten.

Today we had a meeting with Ms. Simmons (the kindergarten teacher) and Ms. Annie (the autism unit teacher) to discuss preparing Aidan for first grade next year. Since he started at Johnson he's been using a system that required him to earn 4 baseballs in order to earn a reward at the end of the day (a toy, computer time, time in the sensory room, etc). He is also required to earn all of his baseballs to get to play his DS when he gets home. Basically what this means is that as he progresses through his day, he'll earn a token at certain intervals if he's met the behavioral expectations. If he hasn't done well (i.e. pushing, running in the hall, refusing to do his work) then he doesn't get the baseball. Ms. Simmons has decided that it is time to phase out the baseballs. She has her own behavioral system in her room that involves check marks for bad behavior and consequences for those checks such as time outs or losing the opportunity to participate in the sharing portion of show-and-tell on Fridays. Her biggest concern about the token system is that Aidan obsesses over how many baseballs he's getting. We're hoping that if we get rid of this system it will free up his concentration for other things. She also asked that we not make a big deal at home out of behavioral problems at school since he gets punished for them at school.

Secondly, we discussed the end of sending him back to the autism unit for the last 15-20 minutes of every day. He used to go down to Ms. Annie's room for the last 45 minutes to an hour, but that was distressing him for a couple of different reasons; he really wanted to stay with his group, and he felt like the autism unit was the "baby room". Because of this they switched the majority of his time in the autism unit to the morning as soon as he gets to school. Currently he spends about 30 minutes in the unit every morning to get prepared for his day. Ms. Annie talks to him about the day's schedule (library or art or show-and-tell) and any changes from routine such as a pep rally or Ms. Simmons being out for the day. They also work on social stories (A Social Story™ describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format.) to address behavioral issues or learn rules for social interactions such as conversation or how to play with friends. The planned change will be to phase out the time in the afternoon that he has been going to Ms. Annie's room. Because the goal is to mainstream Aidan as much as possible, we want him to stay with his class so that he is a part of the normal school day and can enjoy being part of the group. We'll still have him go to Ms. Annie's room in the morning - he really needs this for starting his day off right, and he really seems to enjoy starting his morning that way - but in the afternoon he'll simply stay in Ms. Simmons room and go with the rest of his class to the car line.

Apart from those changes, Aidan will continue to have an aide in class with him at all times and will still have the safety net of Ms. Annie's room should he need to work independently because of behavioral or focus issues. Ms. Simmons stressed his need for an aide. She said that he tends to wander and drift during his work or reading time and needs that support to keep him focused and on task. This is something we very much agree on and I'm glad, because I fear that if we took this support away it would set him up for failure.

The IEP meeting to determine what happens next year should happen in May. Until then, we hope to see lots more progress and lots of fun in Ms. Simmons' kindergarten class. Aidan loves his friends and he loves Ms. Simmons and the predictability of her classroom and her rules. We're so grateful to have her and Ms. Annie to teach and support Aidan every day.

Best Friends

2010-09-12T14:07:00.001-05:00

For autistic children the idea of friends is very different. Their interests are often so focused on one or two specific things (for Aidan it's trains and storm-chasing, but it's branching out and often includes Star Wars or related things). Because of this, it is often hard for neurotypical kids to relate to autistic children because they get bored with the autistic child's single-minded interest in something. Also, autistic kids have a hard time understanding social mores. There is no "polite" where the truth is involved. If you're bothering him, you're bothering him and he's going to tell you. If he has something to tell you about something you said (even if it doesn't seem related) he's going to interrupt and tell you (he may even think you're done talking because he can't read your face to know that you were continuing a thought). Most neurotypical kids don't have the maturity or the patience to put up with the oddities that make up autism, and so they do one of two things: they either make fun of the child endlessly, or they just stop playing with the child.

Aidan has two true friends (I would say three, but he hasn't seen Hayden in so long, I'm not really sure where their friendship stands). One of those two friends is autistic as well. Jacob is the same age as Aidan and about the same level of functionality as well. Because they live by most of the same social rules, they get along well. When one has reached his limit of socialization, the other is usually at about the same point and they separate with no feelings hurt to give themselves time to reset and refresh. They both have similar single-minded interests and so they can share those focuses with each other without getting bored. It's interesting to see their interaction, but I understand why they get along so well.

Aidan's other best friend is Jonas. Jonas is a completely typical little boy, in every sense of the word. What's very interesting though, is that he somehow seems to understand Aidan's actions and oddities and needs and he responds to them with compassion and patience instead of fear or disgust. Don't get me wrong - the two have arguments and fights, just like any other two little boys would. But Jonas doesn't fight unfairly, he doesn't take advantage of Aidan's limitations of language or social understanding (and trust me, I've seen most every other kid Aidan has played with do this very thing). Aidan's imagination and social competency has grown so much since he's started playing with Jonas and it's amazing to watch him grow when he's around this little red-haired kid.

What I'm curious about, and may never learn the answer to, is how and why Jonas, unlike all the other neurotypical kids Aidan has met, is able to mold his own behaviors and sociality and methods of playing to suit what Aidan needs. He's open-minded and compassionate (and very mischievous!) and he genuinely enjoys playing with Aidan. I wish I understood what was different about how this kid sees the world so I could use it to help other people better adapt to their peers who are anything but typical. What lessons has this six year old kid learned that the rest of us need to be taught?

Scary week

2010-07-24T19:31:00.001-05:00

Tuesday afternoon began a few of the scariest days ever. Aidan had been playing in and out of his room all day, had just eaten lunch, and we were all just chilling out. Jeremy had just gotten back from some job interviews and was sitting on the couch next to me when we heard Aidan start crying/screaming. I got up and went in to check on him (he'd been watching television quietly) and he was on the floor with his television on top of him. I pushed the tv off of him (it's a 19 inch old school tube tv) and tried to get him to talk to me. He was bleeding and had a huge knot between his eyes on his forehead, and was screaming in pain but wouldn't respond to me or really even look at me. He was completely limp and I couldn't figure out what was wrong with him. I finally sat him up to clean the blood out of his mouth and he threw up. At this point, we decided he had a concussion at the very least and he HAD to go to the hospital.

We loaded Aidan up in the car, and Jeremy drove - I had to hold Aidan up because he wouldn't hold up his head, was still very limp, although conscious. He kept dozing and so we kept him awake because I wasn't sure if he was just sleepy or if he was passing out. He repeatedly asked where we were while we were driving to the hospital. When we got to the hospital, they were pretty quick about getting him back to a room, which was very good I believe. They checked him out and were as concerned as we were I believe. Aidan's body temperature was low (96.4 F) and he was vomiting and lethargic and most non-responsive. They let him go ahead and go to sleep/pass out while they were doing their exam. They took him back to get a CT scan done on his head to check for bleeding, swelling, or fractures and fortunately that came back clean. Because he was still acting unresponsive and was continuing to vomit, the doctor consulted the Ped's doc who advised that Aidan spend the night for observation.

That night, Aidan continued to be unable to keep even liquids down and was fairly out of it - he didn't speak hardly, even to tell us something hurt. Most of the time he just slept. They put a heart monitor on him and checked his vitals every 2-4 hours just to be safe. The next day around noon the pediatric doc came in and checked on Aidan, and because Aidan was still very out of it, not responding well to us talking to him and still unable to keep anything down, the doctor decided it was best for him to stay a second night. By that evening, Aidan was acting a bit better. Still tired and very quiet, but able to keep liquids down and actually responding to whatever we said to him or asked.

By the next day Aidan was doing so much better so the doc let us go home. Just the process of packing up and driving home exhausted Aidan and when we got home we ALL went straight to bed and slept for a couple of hours. Aidan actually ate some food at the hospital earlier that day and I think he also had a little bit of a pb&j sandwich before going to sleep that night.

Today, Aidan is mostly back to himself. He has a nice shiner, and still tires easily, but he's up and moving around more and is much more talkative. He even has his bratty attitude back for the most part!

I think we might buy a flat screen for him, even though the television that attacked him still works just fine.

Things Every Parent of a Child With Autism Wishes You Knew

2010-07-17T00:07:00.000-05:00

You know from a previous post what every child with autism wishes you knew. Now you can see what every parent of a child with autism wishes you knew.

From Katie Duzan:

Kids with autism are not bad, naughty, or wild hooligans that are a danger to society. They are not products of bad parenting or unloved children. In fact, you'd be hard pressed to find better parents than a lot of the parents of autistic kids. Most families have a single autistic child and other neurotypical kids - proving that it's not logically the 'nurture' that is missing. Our kids do not need physical punishment. Here are some studies on why physical punishment is a bad idea anyway, let alone with children who have problems with relationships and development as it is.

Autistic does not mean Rainman. Yes, some autistic children are savants. But not every autistic child has a "gift".

On the same note, not all autistic children are mentally retarded. Quite the contrary, most autistic kids are just average IQ. It's just hard to test when you can't tell what the child understands because they don't speak.

Our kids may look the same, but they're not. Autism is a hidden disability - meaning that if you looked at a photo of an autistic child, you wouldn't be able to tell from their looks they had a disability. That doesn't mean it's not real. Type 1 diabetes is an invisible disability, too. Keep in mind invisible doesn't mean it's not there. You just have to look closer.

Autism is not a cop-out. Visit a household with an autistic child during the day to witness what autism REALLY is. I promise, it will blow your mind.

We parents are not martyrs. If you think special needs' parent's patience extends to rude and/or ignorant people, think again. We are very protective of our children, and we get defensive and angry just like everyone else. Don't be the one to push that button.

Our kids can hear you, even if they're not looking. And odds are, they understand exactly what you're saying. They don't respond to things like other kids. Watch what you say, because autistic kids also have fantastic memories.

Stimming may seem odd, but it's perfectly natural. You probably stim, too. Click your pen? Chew on your pencil? Play with your hair? Chew gum? Yeah, that's stimming, too. My kid likes to run in circles more than click his pen... It's a matter of preference. But everyone does it.

We are just parents. They are just kids. We will make mistakes. So will you.

You have no idea what really goes on in our lives. We are juggling meetings with the school district, doctor appointments, constant barrages of evaluations along with therapies and teacher meetings. We get crushed at least once every six months by evaluations that compare our child to others and note their massive failings (rather than their progress, in most cases). We go through it so much that there's not even enough time for us to heal. There is a constant gaping hole in our heart from hearing about how our children are not the same.

We want to know about our kids just like every other parent. Please don't think that we use autism as an excuse. We can't fix a problem unless we know about it. It is more of a challenge to teach our children, but we want to teach them.

Pride and ego left us long ago. Go to a grocery store, doctors office or meeting with an autistic child throwing a tantrum and you would totally understand. It fails to phase us parents after a few hundred trips, although the stares and uncaring looks still sting.

Despite the challenges with our children, we love our lives. We love our kids. We don't think they need to be 'fixed' - just 'helped'. We want our children to succeed - on their own terms. We don't ever want pity, although a kind ear is appreciated more than you could ever imagine.

We hate talking about the "could have's" or "should have's" of autism. Especially if they can't be fixed. We can't go back in time and change whether or not we got an epidural, had a c-section, had preterm labor or fed our child formula. If there's nothing we can do about it, there's no use telling us. We guilt ourselves constantly anyway, we don't need anyone else's help. There's a difference between helpful and hurtful. If you walk that fine line, remember to be kind.

We love our kids with all our hearts. Because of (not in spite of) their differences. They have taught us more than we ever imagined we would know. To us, different is our normal.

We know our kids love us. We don't need hugs or kisses to prove it (although some autistic kids are affectionate!). We know anyway.

No two autistic kids are alike. Some kiss everyone they see. Some hardly stim at all. Some rock in the corner. Most are very happy. If there's a diagnosis, there's no need for second guessing. And if the parents think that their child has autism, they're probably right. Disabilities are frightening to parents, and it takes a long while to accept the possibility. If a parent voices a concern, they have already analyzed it to no end. Accept the possibility.

Autism diagnoses are not handed out easily. It takes months to see a specialist, and usually several appointments to get the autism diagnosis. Doctors are very sure before they label a child, and won't give a diagnosis if there's any question whatsoever.

Storm Chasin'

2010-07-15T21:41:00.001-05:00

So, as you all may know (or not know...), Aidan wants to be a storm chaser when he grows up. Now the thing is, he has a hard time with loud noises so the whole thunder thing gives us a bit of a setback. Basically I've just had to remind him that if he wants to be storm chaser then he's going to have to LIKE thunder and get excited by it instead of scared. So far I think it actually worked.

Anyways, the other day it was kind of storming off and on and when we thought it had passed we ran out to run some errands. Well, the storm clouds returned and it started raining and when we got out to the car we noticed what looked a lot like a wall cloud. Aidan assured us that this was, in fact, most definitely a wall cloud (he's the storm chaser, he would know). So we kind of humored him and since it wasn't raining THAT hard (at least, not yet), we drove a bit out of our way and as far as he was concerned we were storm chasing. Not even halfway home the bottom dropped out. We literally couldn't see more than 10 feet in front of us, the wind was gusting really hard, it was lightning like crazy. Aidan was thrilled to be out in a real live severe storm and kept talking about the wall cloud and telling us all kinds of weather stuff. Scary drive but in the long run quite fun.

So now, whenever there's any hint of clouds in the sky Aidan thinks it's going to storm and he wants to go storm chasing. He's so into it that he tried to convince us to buy him a video camera when we were at Best Buy on Tuesday.

I'm pretty sure that didn't have anything to do with the meltdown he had as we were checking out - a melt down that lasted like... 45 minutes total. That was a painful meltdown with lots of injuries all around. And whatever it was that set him off, seems likely to be the same thing that sparked my migraine less than 24 hours later. Probably weather related as well.

Either way, the point of this whole thing is just that Aidan is still going strong on his plans to be a storm chaser. He wants me to call a storm chaser and find out if he can ride with them on one of their storm chases... I told him they probably wouldn't let him... for insurance reasons of course.

End of Year IEP

2010-05-12T18:54:00.000-05:00

Today was the IEP meeting to determine what will happen to Aidan next year. He's done great so far this year (at least since he got moved to Johnson), and we are happy with the progress he's made. Thankfully, they didn't want to try to move him back to Creekside (I'd have had a come-apart if that had even been mentioned as a possibility) yet. I wanted him to move on to first grade, but it was decided that he didn't do well enough in the reading portion of testing to move on. They think he'll do better repeating kindergarten and really solidifying the skills and knowledge offered there, rather than moving on to first grade which is significantly more difficult. Plus, it requires him to work independently and he's not really ready for that yet.

They're going to work on keeping him in the mainstream class for a longer portion of the day, and in order to do that they're going to try to make at least a part of the classroom more sensory friendly for him. He'll keep an aide with him for as long as he needs one, and then will transition to a peer partner if possible.

I'm not sure how I feel about any of this. Maybe I'll write more later once I have had more time to process it... and am not sick.

From "Love That Max" : Top 20 Reasons Moms of Kids with Special Needs ROCK!

2010-05-06T22:21:00.000-05:00

Love That Max: Top 20 Reasons Moms of Kids with Special Needs ROCK!
Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

Melt Downs

2010-05-04T11:02:00.000-05:00

Last week Aidan had a huge meltdown on Wednesday and another the next day. He had gone so long before that without having a meltdown - probably at least 6 months, maybe more. I don't know what was different or what had been bothering him that made it so easy to set him off, but one simple little thing didn't go the way he expected it to and he fell apart.

Wednesday (which was when the full moon was - could this have been the underlying cause?) the trigger was as simple as taking a lego toy away from him because he took it outside. It wasn't a punishment, and he could still have it inside. I explained to him that if he took it outside to play with it with his friend, that he could drop it and break it and even lose pieces. He threw a mini fit and so I told him that he could come inside (it was bordering on a meltdown at this point, but I didn't recognize the signs). He dried it up and went back to playing with Robby (the next door neighbor), so I thought everything was alright. Not five minutes later, I heard him in the garage screaming his head off. I went out there and he was crying and screaming about his lego toy. He wouldn't tell me what was wrong, but he was obviously mad about something. Once again, I told him he could come inside if he couldn't dry it up. This time he didn't though, he only became more enraged. Because of that I attempted to take his hand and lead him inside - of course, that didn't work. His self-control completely dissolved at this point, and as I tried to pick him up to carry him inside he began to shriek and to hit and kick me. It took me a couple of minutes to even manage to pick him up. Stupid me, I still didn't recognize that this was a meltdown at this point.

Once I got him inside, I put him in his room and closed the door. Usually he calms himself down and cries for a little while and then is perfectly fine. Not this time. He began hitting the door, throwing things (trash can, toys, toy boxes, tried to throw the television), and screaming. I went in and he started hitting and kicking me, so I held him - I finally recognized that this was a meltdown, but of course that didn't really matter at this point. Once I got him to stop hitting and trying to throw things, I sat in the floor and he laid with his head in my lap and allowed me to rub his back. He was still screaming and crying "mamamamamamamamamama" - not anything to do with me, this is just a noise he makes when he's extremely stressed or overstimulated.

This whole meltdown lasted around 30 minutes, and afterward he wouldn't talk or look at me. He had calmed down enough that I felt it was safe to leave him in his room. A little while later he came out and ate dinner and was talking and making eye contact again. When I put him in bed, he apologized for being unhappy and throwing a fit, telling me he couldn't get control. He was aware it was a meltdown, even if I wasn't.

The next day at school he had a meltdown as well, this one only last about 15 minutes according to the aide. Apparently he couldn't sit down (he told me he couldn't), and when he melted down he told her (or rather screamed to her) that he couldn't get control.

I don't know what sparked this behavior. He's been perfectly fine since then. I have no idea what happened to be able to prevent it in the future. Maybe it was my stress over school and planning a bridal shower. Maybe it was the full moon. Maybe it was a string of events over the previous several days that none of us could have known would lead to a meltdown. Whatever it was, hopefully I'll recognize earlier in the meltdown next time, that it IS a meltdown instead of fueling it into a bigger meltdown.

Self-fulfilling Prophecies and Service Providers who take advantage of parents.

2010-04-15T23:11:00.000-05:00

It seems so sad to me that there are doctors who, when they diagnose a child with autism, would tell the parents that their child will never speak or be potty trained or live on their own. It seems sad to me when parents mourn their child's diagnosis as if they were told that their child had died or would die next week. Autism is not a death sentence! How many children's parents gave up after being told their child would never say "I love you, Mommy" or be in a normal classroom or any of the other things that other parents take for granted? How terrible! It seems like this is a self-fulfilling prophecy. If you and your child are told that what they have is all that is possible and they just have to deal with it, then isn't it possible that they will never try for better?

What's worse is that there are doctors who will twist it and make it worse. "Unless you take your child to a speech therapist, an occupational therapist, a behavioral therapist and take these medications and do chelation therapy and bariatric therapy and eat only certain kinds of food, then your child will be terrible and never talk to you and can't accomplish anything. Parents spend their entire lives trying to make a better life for their children. It's what we do. And when we're faced with a problem we didn't expect then we ask professionals for guidance. But what's terrible is when these professionals take advantage of us and our desire to do what's best for our children. We spend thousands or millions of dollars on the various therapies and classes and diets that we're told will help. But does it really help?

I can't afford all the different therapies that might benefit Aidan. When he was diagnosed I was a single mom who made under $30k a year. I didn't understand the GFCF diet, and didn't really see how I could consistently change his diet across all the different caretakers he had (myself, my mom, his babysitter) and even afford to buy the best possible foods for him. Even though the doctor that diagnosed him said he needed speech therapy, I couldn't get the school system to agree, so I had to work with him on his speech. I couldn't get them to do occupational therapy either (teaching him basic life skills like potty training or buttoning his pants or throwing and catching a ball) so I had to teach him those things.

The thing is, I think I've done a pretty good job with him between myself, my family and most recently the amazing people at his school. He talks more than ever, although you can't always understand him. He's completely potty trained (which a year and a half ago I worried might not happen) and can button his own pants. He's learned to ride a bike and throw a ball and play video games and play make believe. It's all the product of a lot of hard work: his AND mine as well as my parents, Jeremy, our family and friends, and his teachers most especially Miss Annie.

I guess I just feel like a lot of doctors and service providers and Jenny McCarthy's see parents who are desperate to help their child, and they take advantage of their fear and helplessness. As parents we're supposed to be able to fix everything and when we can't then we feel like we're letting our children down. There are people who prey on that and I really think they stink for it. We're told our child can only be "cured" if we do xyz therapy and abc diet and take them to Dr. So-n-so, so we do what we're told. Maybe sometimes the therapy is necessary, I don't deny it, but I think that a lot of it is ridiculous and experimental and outlandish and just a way to make money off of desperate people.

I'm done ranting now.

Autism Awareness

2010-04-08T18:10:00.001-05:00

April is Autism Awareness Month! I'm both excited and saddened that we get our own month now. It's great that we have a chance to educate people and gain support for our cause, but it's sad that Autism Spectrum Disorders are common enough for us to get an entire month dedicated to our children. In honor of the month I've gathered some information for those of you who don't necessarily know all the in's and out's of autism. My information comes from the CDC and Google Health, but you should also check out Autism Society of America. Don't forget to join us Saturday morning for our Autism Walk - or find one in your own hometown if you aren't in Huntsvegas!

And to all of you who have given us so much support since Aidan's diagnosis, thank you!

Prevalence

It is estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD.
ASDs are reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls. However, we need more information on some less studied populations and regions around the world.
If 4 million children are born in the United States every year, approximately 36,500 children will eventually be diagnosed with an ASD. Assuming the prevalence rate has been constant over the past two decades, we can estimate that about 730,000 individuals between the ages of 0 to 21 have an ASD.
Studies in Asia, Europe and North America have identified individuals with an ASD with an approximate prevalence of 0.6% to over 1%.

Approximately 13% of children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.

Economic Costs

Recent studies have estimated that the lifetime cost to care for an individual with an ASD is $3.2 million.
Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110–$6,200 per year. On average, medical expenditures for individuals with an ASD were 4.1–6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater.

Signs of Autism (there were a lot of "a-ha!" moments the first time I read these after Aidan was diagnosed)

Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is age 2. Children with autism typically have difficulties in:

Pretend play
Social interactions
Verbal and nonverbal communication

Some children with autism appear normal before age 1 or 2 and then suddenly "regress" and lose language or social skills they had previously gained. This is called the regressive type of autism.
People with autism may:

Be overly sensitive in sight, hearing, touch, smell, or taste (for example, they may refuse to wear "itchy" clothes and become distressed if they are forced to wear the clothes)
Have unusual distress when routines are changed
Perform repeated body movements
Show unusual attachments to objects

The symptoms may vary from moderate to severe.
Communication problems may include:

Cannot start or maintain a social conversation
Communicates with gestures instead of words
Develops language slowly or not at all
Does not adjust gaze to look at objects that others are looking at
Does not refer to self correctly (for example, says "you want water" when the child means "I want water")
Does not point to direct others' attention to objects (occurs in the first 14 months of life)
Repeats words or memorized passages, such as commercials
Uses nonsense rhyming

Social interaction:

Does not make friends
Does not play interactive games
Is withdrawn
May not respond to eye contact or smiles, or may avoid eye contact
May treat others as if they are objects
Prefers to spend time alone, rather than with others
Shows a lack of empathy

Response to sensory information:

Does not startle at loud noises
Has heightened or low senses of sight, hearing, touch, smell, or taste
May find normal noises painful and hold hands over ears
May withdraw from physical contact because it is overstimulating or overwhelming
Rubs surfaces, mouths or licks objects
Seems to have a heightened or low response to pain

Play:

Doesn't imitate the actions of others
Prefers solitary or ritualistic play
Shows little pretend or imaginative play

Behaviors:

"Acts up" with intense tantrums
Gets stuck on a single topic or task (perseveration)
Has a short attention span
Has very narrow interests
Is overactive or very passive
Shows aggression to others or self
Shows a strong need for sameness
Uses repetitive body movements

March Report Card (First since December)

2010-03-29T15:45:00.000-05:00

We got Aidan's report cards back today (he gets one for his autism class and one for kindergarten), and he's done great! I figured you would all love a run down of his progress this year.

Annual Goal Progress Report

Goal: Aidan will select appropriate voice level when interacting with others with 90% accuracy by 4/22/10

Progress - 2 (Some progress made)
Extent - 2 (Anticipate Mastery)
"Has made progress but on some days still has to be reminded."

Goal: Aidan will following one- and two-part oral direction with 90% accuracy by 4/22/10

Progress - 2
Extent - 2
"Has done very well following directions. When he does not want to he has to be prompted."

Goal: Aidan will exhibit appropriate social skills by controlling his excitement, using an inside voice, use appropriate social communication skills and will make and keep friends 80% of his school day by May of 2010

Progress - 2
Extent - 2
"Has made friends in kindergarten. Still has to be reminded to be quiet at times. Will get upset if staff prompts him or shows him a sign to be quiet.

Goal: Aidan will demonstrate appropriate behavior by following 2 step directions, using an inside voice, remaining calm and will ask for a break/his music when he feels himself becoming over stimulated 3 out of 4 times by May of 2010.

Progress - 2
Extent - 2
"Has done very well asking for breaks and his ear covers to get away from the sound before it gets too loud for him."

Goal: Aidan will improve his basic living skills by demonstrating the ability to fasten and unfasten hook and button closings on his clothes and by being able to catch a ball that has been tossed to him from a few feet away 3 out of 4 times by May of 2010.

Progress - 2
Extent - 2
"He is able to catch a ball and has had no issues buttoning and unbuttoning."

___________________________________________________________________________

Kindergarten Report Card Assessment

S (Satisfactory - 80%-100%) - Identifies Letters: (they give a list of all the ones they expect him to know, large and small, but let's face it, he knows ALL of his letters little and big...)
S - Identifies beginning sounds: M, T, A, S, P, C, I, B, N, R, D, K, F, O, H
S - Recognizes high frequency words: I, am, the, little, to, a, have, is, we, my, like, he, for, me, (didn't know "with"), she, see, look, they, you, of, are, that, do, one, two, three, four, five
S - Identifies numerals: 4, 8, (thought 13 was 31), 1, 3, (14 was 41), 9, 15, 0, 12, 6, 2, 11, 7, 10, 5
S - Can count to 30 --- counted to 66
S - Uses drawing, scribbling, inventive spelling to express thoughts about personal experiences.
S - Spells name correctly
S - Handwriting: prints letters, numerals, and first/last name correctly
S - Understands relationships: Extends a pattern, rhyming words, opposites
S - Identifies coins: penny, nickel, dime, quarter
S - Obeys school rules
S - Uses good manners
S - Gives best effort

He also got an "S" in music and PE, and of course already knows his colors, and shapes.

____________________________________________________________________________

So obviously we're quite proud of the kid. He's so smart. I worry that they'll want to send him back to Creekside to do Kindergarten again except in the mainstream classroom. I really think that's a bad idea for a lot of reasons. First of all, he's way too smart and too far along to do kindergarten again as his report cards show - he'd be terribly bored and would have poor behavior and attention span because of that. Also, Creekside doesn't have the resources that Johnson does - they only have one special ed teacher and a couple of aides. I believe Aidan needs to start out where he'll leave off this year, doing about an hour or two in the mainstream classroom WITH an aide and be in first grade. He needs to work into a full day in the mainstream class with an aide, and then slowly have the aide with him for less and less time each day. We'll have an IEP meeting at the end of April or beginning of May and you can bet your britches I'll be insisting that things happen the best way for Aidan to succeed.

Routine Interruptions

2010-03-24T15:44:00.000-05:00

This week I'm reminded of how tenuous Aidan's hold on a normal life is. Before Spring Break he had sooooo many days in a row and was mostly really easy to deal with at home too. During Spring Break other than the two of us getting on each other's nerves a bit, he still did great. But when he went back to school this week the feces hit the air circulation device so to speak. He's had two bad days in a row. Yesterday he was hitting kids and throwing things at them and not behaving well in general. Today he was talking back to his teachers and pushed one of his classmates in the hallway because he wanted to be the line leader. Ms. Annie says that they're doing SAT's this week and that the mainstream kindergarten teacher was out today. Yesterday Ms. Annie was gone part of the day on a field trip.

Aidan isn't great at dealing with transitions or changes in his routine. It's one of his weaknesses. Of course, he can't let that weakness rule his life or affect his behavior forever. He's got to learn how to be flexible and control his own reactions to the changes in his life. The only way I know how to help him do this is with consistent consequences no matter what the reason for his poor behaviour is. Yesterday I gave him a warning that if he had another bad day at school he would not be allowed to play with his DS today and would lose his allowance that he gets on Sunday. He's been doing great with helping out around the house and keeping his room clean because he gets a weekly allowance when he meets the requirements for earning it. I explained to him that school was another of his responsibilities and he had to be good there just like he had to feed the kitties and keep his room clean in order to earn his allowance. Today when he had a bad day and was told he wouldn't be getting to play with his DS or get his allowance on Sunday, he whined a little but seemed to understand that his actions had consequences and the consequences were fair.

Figuring out how to handle (and help him handle) the major and even minor changes in his life and his routine is quite a hurdle to jump, but I think we'll make it.

Autism Awareness Card

2010-03-10T01:33:00.001-06:00

I designed these cards for those of us who know and love someone with autism and sometimes have to deal with the funny looks or the unwanted advice from people who don't know any better. If you'd like me to make you some, let me know and I'll be happy to, I just have to buy the actual paper to do so and haven't gone to the store yet. Of course I would replace my email address with yours. If there's anything you think I should add, let me know (not sure where I'd fit it in, but I'm sure we'll manage).

What's New?

2010-03-09T23:45:00.000-06:00

Just a quick update on what's been going on the last few weeks in the wonderful world of Aidan:

Aidan has been spending as much as an hour at a time in the mainstream kindergarten class, with an aide.
Because of his difficulties focusing and remaining calm, we are considering whether he would benefit from ADHD meds or a change in his diet.
Other than the concentration and hyperactivity, Aidan has had a long string of great days at school and his attitude has been much more manageable during this time, which is a great relief and much more enjoyable.
Aidan's class has been practicing and preparing for the Special Olympics in April. Because Aidan is not in second grade, he is not able to participate, and is technically not permitted to even go and watch. Miss Annie (Aidan's teacher in the autism unit) spoke with the person in charge and got permission for Aidan to attend even though he is still not going to be allowed to participate.
A couple weeks ago, Aidan decided he wanted to be an Olympic ice skater. Jeremy and I went ice skating a couple of times without him (don't want to break our own necks trying to keep him from breaking his), and then this past weekend we took him skating. He did great - started out holding on the wall, then onto a traffic cone, then for a while he skated without either. I'm so proud of him. He wasn't sure at first, but has decided he wants to keep learning to skate. He doesn't want official lessons though, he just wants me to teach him for now.
Today we discovered that Aidan has his first loose tooth! It's official, he's finally becoming a big boy.

Ironic, but not in a good way.

2010-03-06T19:46:00.000-06:00

Autistic Child Ruins Marriage He Was Born to Save (The Onion)

HOUSTON—With the challenges accompanying his developmental disorder widening the already vast gulf between his parents, autistic child Evan Thomas, 3, continued this week to destroy the failing marriage he was brought into this world to save.

Evan, who through the very act of being born was entrusted with the task of resolving lingering conflicts, soothing deep-seated contempt, and restoring intimacy to Mark and Sharon Thomas' long-strained relationship, has thus far utterly failed in his assigned duties, sources reported Monday.

"It's so much work taking care of Evan, and Mark just refuses to help out as much as he should," said Sharon Thomas, who endured a long, agonizing childbirth to put an end to the couple's constant bitter arguments. "It's so frustrating. I don't get any time to myself because Evan needs attention like 24 hours a day."

"I never asked for this," Sharon added

According to sources, Mark Thomas, 32, had always wanted a healthy, happy, completely normal son to provide a quick and easy fix to all of his marital problems. However, rather than allaying their trust issues and instantly making everything all better, Evan has reportedly driven a deeper rift between his parents by prompting fights about who is to blame for his condition.

"The doctors are constantly telling us that it's not anyone's fault, but if you'd ever met Sharon's brothers, you'd know that something's not quite right on that side of the family," Mark said. "We probably shouldn't yell in front of him as much as we do, but he doesn't really pay much attention and it honestly doesn't seem to bother him."

"In fact, nothing seems to bother him," Mark continued.

Although Evan was only diagnosed with autism six months ago, Mark said it was clear right after bringing him home from the hospital that something was wrong with their son, since their lives did not take a dramatic 180-degree turn for the better, lingering disputes did not just melt away, and years of underlying tension were only brought into sharper focus.

The child, who according to his parents rarely smiles or acts cheerful, has left many in the household concerned that he's not committed to mending the broken relationship. Moreover, during the past three years, Evan has reportedly done almost nothing to curb Mark's controlling nature or Sharon's cruel emotional abuse.
Evan has also failed to utter the words "mama" or "dada," thereby ruining any chance his parents might have had at forging an instantaneous, all-healing bond.

"Nobody told me I'd be so exhausted and cranky all the time," said Mark, who had anticipated that a son would create the mutual respect that his marriage has always lacked as opposed to making him feel overwhelmed and trapped. "Now, I just get nagged about never dealing with Evan after I bust my ass at work all day."

Mark and Sharon also complained that the highly structured schedule they're forced to keep to prevent Evan from "acting up" has severely strained their social life, causing them to miss a recent Super Bowl party at a neighbor's house that all of their friends without special-needs children were at.

In 2006, before giving birth to Evan, the awful couple attempted to salvage their relationship by purchasing an American pit bull terrier puppy. But the dog, who was reportedly a real pain to take care of, lacked the discipline to put in any work on their miserable marriage and always demanded too much affection.
Family members told reporters they weren't surprised Evan has not yet managed to transform the couple's dysfunctional marriage into a healthy and loving one.

"Oh God, they should never have had a kid," Evan's grandmother Janet Harmon said. "She should have gotten her tubes tied like she threatened to do in the first place."

Mark and Sharon said they were currently trying to get pregnant again in hopes that a new baby would take off some of the pressure of raising Evan all alone.
________________________________________________________

I love how many articles blame marital problems on special-needs children. It's so painfully ironic. Of course, it's much easier to blame all the problems in your life on a child who has no choice or control over it, rather than take personal responsibility for your life sucking so bad. Grow up people. Really? I couldn't even find this article funny, it's just too true for so many people.

Autism is a Gift

2010-03-01T14:13:00.000-06:00

I grew up watching and reading X-men. In that world, humans had "evolved", via mutation, to another level. Normal, unevolved humans considered the mutants to be freaks and disabled. Because of their superhuman abilities the mutants often had a very difficult time functioning in the real world.

Sound familiar?

In that world, our children would be taken in by Dr. Charles Xavier and their abilities would be honed and they would be taught how to use them to change the world. Their "sensory integration disorder" would be superhuman hearing and sight and touch and taste. Their way of thinking in pictures or patterns would be such an assett and we'd see neat little montages of how their brains worked.

Autism is not a punishment, a curse, a disability, a disease. It is a neurobiological change to the human body and brain that results in a different or better set of abilities. Our children don't think like us, they don't experience the world in the same way we do. Because of this, we label them as "disabled" and give them therapy. How can we take the knowledge that these children are different and possibly BETTER and instead of trying to change them and make them more like us, help them to take advantage of the way they see and think and feel? The differences they could make in this world could be profound.

Where would we be today with Mozart, Van Gogh, Einstein, Newton, Tesla? They would likely be diagnosed with some Autism Spectrum Disorder today. Perhaps that label should lose the word "disorder" and find another word that still sets them apart, just not in a negative way. I'm not saying we shouldn't teach our ASD children differently - we obviously should! Just like we offer different opportunities to a child who is phenomenal at sports, and we put a child who is extremely gifted in the advanced classes, we need to make sure we're not trying to change our children to make them more like us. Maybe we should be trying to be more like them? Maybe we should change the world to fit them, instead of telling them they should change to fit the world.

Surprise Surprise

2010-02-26T19:37:00.000-06:00

Apparently, Aidan can do math. Go figure. We know he's a smart cookie, there's no doubt about that, but I don't think I was even doing math (okay I still don't do math), let's say my brother instead, I don't think he was doing math that quickly when he was 6.

So this morning while Aidan's getting ready for school, I asked him if he was spending time in the regular kindergarten class and what he's learning in there. He says he learns about toys, of course, because nothing else is as exciting as new and strange toys. I asked him if he was doing any math and he said yes. Well as you can imagine we started asking him math problems. At first they were simple. "If you have two bakugans and Miss Annie gives you another one, how many do you have?" "Three." No hesitation. "If you have three bakugans and one of them breaks how many do you have?" "One." Again, not a pause. "Alright... if you have five bakugan and you buy two more, how many do you have?" "Seven!" o.0

It was such a surprise. He got bored after that, so of course no more math problems today. But really? After all of this, he's a math whiz too? Gee, I got a kid genius on my hands guys!

You'll Never Walk Alone

2010-02-25T21:43:00.000-06:00

Every time I hear this song, I just want to grab Aidan and hold him and sing it to him. This song is on a commercial during the olympics at least once or twice an hour. And every time it brings tears to my eyes. If you haven't heard it, go find the Judy Garland version and listen. An autistic child should never walk alone (no child should), and I will always always always support Aidan's dreams. (This week the dream is ice skating)

When you walk through a storm

hold your head up high

And don't be afraid of the dark.

At the end of a storm is a golden sky

And the sweet silver song of a lark.

Walk on through the wind,

Walk on through the rain,

Tho' your dreams be tossed and blown.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Walk on, walk on with hope in your heart

And you'll never walk alone,

You'll never, ever walk alone.

Seriously folks?

2010-02-24T03:08:00.000-06:00

I have talked before about how much of a blessing Aidan is. Today I wanted to scream, and this was before he even got home. It wasn't anything he did though, rather something someone else said. If you hadn't heard: Bob Marshall, R-VA: disabled kids are God's punishment for abortions?! http://tinyurl.com/yalfvx7.

Seriously Bob? Wow, "conservative Christians" can really put their foot in their mouth sometimes. Did you even bother to think before you spoke Bob? Honestly, I'm not sure what he was thinking. According to Bob, "The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children," said Marshall, a Republican."In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There's a special punishment Christians would suggest." Okay... so what about all those mothers who never had an abortion but our children were born with a disability? And what about all the women who had an abortion and their subsequent child wasn't disabled? The logic in that statement is SO far off it's beyond sad.

The biggest problem I have with Bob's statement is that he considers disabled children a punishment at all. This is such a prejudiced and hateful statement! Anyone who has a child with a disability knows that their child is not a punishment but a gift! No, it's not easy, but how lucky are we that we were good enough and strong enough to receive such a wonderful challenge?

Bob, do us a favor. Duct tape your mouth shut so you can't make any other stupid hateful comments. You make everyone look bad.

The glass half full

2010-02-19T02:55:00.000-06:00

A diagnosis of autism often feels like a death sentence when it's first given. Your mind goes immediately to the fact that your life will never be the same, and there are so many things your child may never do. It becomes overwhelming to try to determine what services will help your child and when and how soon you can get them, not to mention how the heck you're supposed to pay for all of this since it's usually not covered by insurance. It would be so easy to be angry, to grieve and mourn what your child could have been, to be depressed over it all.

But take a different look at it.

You are blessed to have a child with such a unique way of seeing the world. He or she can teach you about things you never even knew you needed to learn. Only a child with a disorder such as autism can show you how differently the world appears to them. Only a parent with a child who may or may not ever speak can appreciate so strongly the importance and joy of hearing their little one say "Mommy" or "I love you". We learn patience, stubbornness, selflessness, hope, perseverance, and unconditional love.

If you can't look at those things as a blessing, then take this and chew on it for a while: your child has autism, which is pretty much never life threatening (unless your child has comorbid symptoms which prevent them from taking nutrition or something like that). Imagine that diagnosis of autism and how scared you were when you got it. Now imagine if that diagnosis were one of leukemia or some other deadly childhood illness. The likelihood of your child "coping" with or overcoming such a terrible disease is often slim. You must watch them suffer as they go through painful treatments, and are in and out of hospitals. Some parents even have to watch their child die. I can't imagine the helplessness I would feel if Aidan had been diagnosed with a childhood cancer. It's my job to protect him. I yell at principals and teachers who I don't feel are doing their best to help him. But what if the doctors ARE doing their best and it's still not enough? Who do you yell at then? At least with a diagnosis of autism, I know my child is healthy, and for now happy. I can help him to be happy by making sure he learns to overcome his diagnosis, learns to live above and around it rather than just live with it. I can teach him to not let it control his life and keep him from doing things he wants to do. I never have to be afraid of dreaming and hoping with him.

Take stock of your blessings... often times they are more significant than you realize. You were chosen to be part of an amazing miracle, and to be worthy of raising such a special child.

If you aren't the parent of a child with autism, I still encourage you to count your blessings. It's so easy to be cynical and to think about how crappy life is, especially now when the economy is bad and times are tough. But look at all you do have! Did you wake up this morning? Did you have a roof over your head? Did you have food to eat and clothes to get dressed? What else do you have that you take for granted? A loving and supportive relationship with your family? Great friends who would come get you if your car broke down at 4am? A job that may not be your favorite but at least pays your bills? Life changes drastically when you look at what you have instead of what you don't.

A Different Perspective

2010-02-10T02:10:00.000-06:00

It is not until you become a mother that your judgment slowly turns to compassion and understanding.
- Erma Bombeck

As the mother of a child who has autism, I have learned this better than I thought I could. I'm not saying that I don't sometimes still judge people, I'm not perfect. But one group that I've learned not to judge is my fellow parents. Most people, even some parents, when they see a parent whose child is misbehaving or being obnoxious or loud or throwing a tantrum, they glare at the parent as if they are the worst parent in the world. We're guilty of having done it at least once, even if we don't admit it. We see the child throwing a tantrum, or talking too loudly in the restaurant, or wearing a diaper even though they should be much too old to do so. And we automatically think, "oh, if I were that child's parent, what I would do is....". But you know absolutely nothing about that child or his parent in most cases. And sometimes, even if you do, your lack of perspective gives you a skewed judgment of what is really happening and how it should be handled.

Aidan has a hard time using the correct volume at the right time and place. Aidan is very sensitive to sound, light, and smell (and maybe other things he can't tell us). Aidan has a difficult time with transitions and needs extra warning that something is about to change, and what to expect. Aidan isn't always able to put into words what he wants or needs and it frustrates both of us. Aidan loves watching the same thing over and over and over and over. Aidan loves to sing, and will do so as often as he's permitted to do so, and sometimes when he isn't. Aidan can't always make eye contact, but he tries to.

But let's assume you didn't know any of those things about Aidan and you came across the two of us at the grocery store. He starts out talking or singing loudly, and you may not know it but I've given up trying to quiet him down because it isn't a library or the movie theater. Then, without much warning he puts his hands over his ears and starts acting rather brattishly - you don't pay attention but to him the combination of sounds has become overwhelming, perhaps the loudspeaker came on or more people were talking than before. He's also hungry and the lights are bothering his eyes, but you don't know this when he starts having his melt down, screaming and throwing a fit because he can't tell me what is making him so uncomfortable. I have to finish my grocery shopping and I don't have anyone who could have watched him because I'm a single mom and don't always have an immediately available babysitter, or a chance to do it while he's at school. I know that you're watching me and rolling your eyes and talking behind your hand to your friend about how terrible of a person and irresponsible of a mother I am because I can't control my child, and don't have the common courtesy to take him out of the store so people can shop in peace.

I've learned the hard way never to judge parents for the way their children act, because it requires me to make an assumption that everything else about their life is perfect and they are just choosing to let their child behave poorly. I can't stand the look I get when Aidan is having a bad day. I thank God that those days are fewer now than they used to be, but there was a time when I dreaded taking him anywhere in public. It made me want to carry around business cards so people would stop looking at me like I was a bad person, and looking at my child like he's the devil.

So, next time you're out at a restaurant or shopping, or wherever you may be, and you see a child who's acting like a handful and it annoys you, before you make a snarky comment about how you would handle it... stop. Think. Reserve judgment. Be compassionate. Smile at the mom who's struggling with her child that is screaming for apparently little reason (don't assume it's just because he didn't get his way), offer to carry something for the dad who needs to pick his little girl up because things are too loud for her and she's in a panic, laugh and join in when someone's child is singing along with the music. We're so quick to judge people, and it's a hard habit to break. I was blessed to be given a little boy who could force me to break that habit.

Honestly I think someone secretly prayed I would be given patience.

Thanks, whoever you are. My test has been awesome!

Oh noes! No circus this year.

2010-02-06T14:18:00.000-06:00

We had planned on taking Aidan to the circus today. Sadly it seems the tickets are sold out. I honestly dreaded telling Aidan that we couldn't go, because we'd talked about it for a couple of days and he seemed to be really really excited. I was so proud of him though, when we told him we couldn't go he was upset for a few moments, but was willing to come up with an alternative to keep himself entertained. I asked him if there was something else he would rather do (I figured he'd ask to go to Sci-Quest or the toy store or something), and he decided he wanted to play with his tornado machine. That was seriously surprising to me. There was no melt-down, no whining, no begging to go somewhere else or anything. He was happy to play with his toy (THANKS MAWMAW!) instead of going to the circus. I feel horrible that he didn't get to go, and that I didn't keep my promise to him, but I didn't realize the circus would sell out!

It's great to see him make progress and learn to take control of his behaviour and his attitude. I'm so proud of him (even when he has bad days, which are fewer and further between)!

God Chooses Mom for a Disabled Child

2009-10-29T16:02:00.001-05:00

(Also posted previously on Facebook)

God Chooses Mom for Disabled Child

written by Erma Bombeck,

Published in the Today Newspaper Sept. 4th, 1993,

Most women become mothers by choice, some by social pressures, and a couple by habit this year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. "Armstrong, Beth; son; patron saint, Matthew. "Forrest, Marjorie; daughter; patron saint, Cecelia. "Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a `spoken word.' She will never consider a `step' ordinary. When her child says `Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her patron saint?" asks the angel, his pen poised in midair. God smiles. "A mirror will suffice"

10 Things Every Child With Autism Wishes You Knew

2009-10-29T15:57:00.001-05:00

I've posted this before on my Facebook, but I feel like I should post it again because it is so very true and helpful:

Borrowed from a book I own and wish everyone who knew me or my child had an opportunity to read...

10 things children with autism wish you knew.

1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.

Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.

4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.

5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.

There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. Here's a great web site for learning more about visual schedules http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp

7. Focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.

8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.

9. Try to identify what triggers my meltdowns. This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

10. If you are a family member, please LOVE ME UNCONDITIONALLY. Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it.

It all comes down to three words: Patience. Patience. Patience.

Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the GIFTS autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?

You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.

I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They had autism too.

Aidan moves to a new school... or, why first year kindergarten teachers shouldn't have autistic children in their classroom...r

2009-10-13T16:37:00.004-05:00

It's been an excruciating and stressful process, which has taken nearly a month (maybe more) to straighten out, but Aidan is now happily ensconced at his new school. Let's hope this time is more successful.

Because I registered Aidan late at Creekside Elementary (here in Limestone County), he was placed in a classroom with a FIRST YEAR TEACHER. Okay, seriously, who is this fair to? Aidan did alright at first, he made lots of friends, and came home singing songs and did his work. He adored his special ed teacher, Ms. Matsos (thank God for her, or things would have been a million times worse!), but she could only spend so much time with him, since she's got a lot of other students to tend to.

Aidan has a lot of issues with sensory overload, and I made sure that his kindergarten teacher (Ms. Hayes), Ms. Matsos, and the principal (Mr. Scott) all knew about these issues. Sounds are really his weakness, and he has to put a lot of effort into ignoring all the little noises you and I are able to filter out with no issue. I know some smells bother him, and he hasn't really told me about whether certain lights bother him, but who knows. We send his iPod to school with him everyday in case he needs time out and some different sensory input, and you'd think Ms. Hayes would learn pretty quickly when Aidan needs a chance to escape.

A couple weeks into school, they started DIBELS testing. This is basic reading skills competency for kindergartners. Aidan had been doing fine up until this point, with really very few problems. As far as I can guess, this change of schedule and routine really threw him off and the problems started.

Now anyone who's been around Aidan a lot, knows that when he's trying to ignore the world around him and focus on the task at hand (school work, TV, playing with trains, Lego's, etc.), if you touch him or speak to him, he lashes out. He just has a hard time with the sensory input. At school there are even more noises to try to filter out, and even more to focus on. Of course, kindergartners aren't great at staying out of personal space, or leaving other kids alone, and they all sit at group tables together. What does this mean for Aidan? It means that he starts hitting kids or pulling their hair or whatever reaction he feels is necessary when they break his focus or he goes into sensory overload. He had been having problems with pickup in the afternoon because it was too loud, and we changed that situation, but you can't exactly pull a kid out of the classroom every time he gets overwhelmed.

At least twice a week I was being called by the principal, or having to go the Principal's office to pick Aidan up because he had hit another student, or worse had hit his teacher. Kindergarten children should not be spending the day in ISS (in school suspension). But Aidan realized that the office was quiet, and there weren't other students there to invade his space or make irritating noises. So he continued acting out, because for him that wasn't a punishment. And it felt wrong to punish him for reacting the only way he knew how to a highly uncomfortable situation - he just doesn't have the coping skills to deal with it any other way.

Finally, Mr. Scott (the principal at Creekside) recommended that we consider placing Aidan at a different school that could better provide for his needs as a child with autism. Johnson Elementary, which is about the same distance from our house, just in a different direction, has a self-contained autism unit, with several aides to help the children one-on-one, and one of the best autism teachers in the state.

What an opportunity!

We were hesitant at first. Aidan is super-smart (highest reading level in his kindergarten class!), and very high-functioning - would these kids who were much lower-functioning make it harder for him to progress? Would he be overwhelmed by their behavior? If we didn't move him, what could we do for him?

Fortunately, Limestone County spent the majority of their stimulus money on their autism programs. In fact, they have a nationally renowned behaviorist from Auburn on retainer for the year - Dr. Babcock. He's odd, but he's very intuitive and has been working with autistic children for a very long time. We had the chance to sit down with him, as well as two of the special ed coordinators from the school board, and the autism teacher at Johnson (Ms. Enloe, who is amazing). Dr. Babcock also went over and spoke to Ms. Matsos about Aidan, and also observed him for a little while to get an idea of Aidan's behavior. Apparently, it is very rare for Dr. Babcock to recommend for a child to go to the autism unit, but he told us without a doubt that this was where Aidan belonged (heck, we asked God for a clear direction, I guess he thought he'd better make it crystal clear!). He feared that if we didn't move Aidan, he would develop a school phobia - he didn't want Aidan to feel like he had to act out to escape the discomfort of the regular classroom.

So, I took Aidan the next day to visit the classroom, with the hopes that if he liked it, we could get him enrolled the following Monday. This was the plan, and I was told by the special ed coordinator that it was clear for us to do this. We were delayed by a week because Ms. Enloe was going to be out on training, but when she returned then we'd start Aidan there and have his IEP meeting on his first day.

This is where the tangled mess that had me so stressed out really got even messier. Jeremy and I showed up Monday morning with Aidan who they took to the classroom. Ms. Matsos, Ms. Enloe, Dr. Lewis (Johnson's principal - who I don't like), and Ms. Simmons (a kindergarten teacher at Johnson) met with us. Instead of coming up with an IEP, they (Dr. Lewis and Ms. Enloe, but mostly Dr. Lewis) started back-pedaling. Oh, we didn't know about any of this, we don't have enough info to do an IEP, we don't know enough about his behavior, we didn't know this decision was final, are we sure he should be at Johnson, I thought Dr. Babcock was supposed to make a behavior plan first, that meeting wasn't official, let's step back and think about this. I went into mama bear mode. I was ready to slash some throats and take some heads. We left that day without accomplishing anything. They said he could stay the rest of that day, but should return to Creekside until further notice. The principal would attempt to contact the special ed coordinator. We had to wait until Friday after next to hear from Dr. Babcock. Who cares if we're shoving an already miserable little boy back into an uncomfortable and unproductive environment? It's convenient for us.

Thank goodness Ms. Matsos told Mr. Scott. About an hour after the disastrous meeting, my cell phone rang and it was Ms. Baccus (the special ed coordinator). She said Mr. Scott had called her and said the meeting hadn't gone well. I told her what had happened, and she confirmed that it was not THEIR decision to make, and that the decision had already been made and emails had been sent two weeks before. She said not to get upset because it would be taken care of. She called me back again and said we could go ahead and transfer Aidan from Creekside to Johnson, that he would finish out the week at Johnson, and on Thursday we'd have the IEP meeting, and she would be there to ensure that things were done properly and Aidan wasn't shuffled to the side again for the sake of bureaucracy.

So Aidan started his second week at Johnson yesterday. They've been working on handwriting, and numbers, and when he behaves for a certain amount of time he gets to go the sensory integration room. He calls it the nursery room for some reason - he loves it. It has quiet music, and dim lighting, and all kinds of interesting toys like a ball pit and a tent, and eventually a swing. He seems so much happier.

Right now they're observing his behavior, and letting him acclimate to the new school and environment. He's getting used to the new schedule and people, and then once they've gotten to know him, he'll start spending time in the regular kindergarten classroom, with an aide. Eventually, he'll spend the majority of his day in there with an aide. The plan is that next year he'll be back at Creekside and we'll try the whole kindergarten thing again. Considering he's got the maturity of a 4 year old right now, then next year he should fit right in. And you can be sure, I won't allow them to place him with an inexperienced teacher again.

First Week of Kindergarten - Conquered!

2009-08-16T19:37:00.002-05:00

Congratulations to Aidan - he made it through his first week of kindergarten. And thanks a million to his teachers for helping him through it. There were ups and downs and challenges, but in the end, I think we both survived with flying colors.

Of course he took his ipod with him per the recommendation of his special ed teacher, but surprisingly, he did not even have to use it once. At least not that I know of - and definitely not on the first day when you'd have thought he might have to. The reason we send the ipod is because when he gets frustrated, or goes into sensory overload he can put the earphones in and turn on the music and it allows him to calm down much more easily. That little ipod was a great investment!

This week he learned about red (he can spell it and sing a song about it), squares and circles ("a square is a shape with 4 equal sides" and "a circle is a shape that is round"), and how to write the number one. Of course he wouldn't talk about it at first. In fact, for the first 3-4 hours after he got home from school every day, he wouldn't talk at all - only pointing and grunting, and if I tried to get him to talk, he'd scream at me not to talk to him. But Friday night he was a little talking machine, so I guess he finally transitioned.

The only other issue we had, and I'm not sure this had anything to do with autism, was that he didn't eat his lunch the first day in the cafeteria --- the teachers let him only get chips and cookies and beans, and he didn't eat the beans. Genius, you have to tell a kindergartener what to eat. Sorry, but really? I made it clear to the teachers and Aidan that he had to have one food from each food group and eat some of everything. I guess the rest of the week went better - they didn't email me after the first day, and he wouldn't talk to me...

We'll see how next week goes!

Bill of Rights for Parents of Special Needs Kids

2009-08-12T19:27:00.000-05:00

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

((This is not mine, I found it on someone's blog))

The need for a new charity... and how to provide for it.

2009-08-09T23:25:00.003-05:00

So I've been thinking for nearly a month now about how to start a charity for local children with autism. It would be a way to provide grants or scholarships which their parents could use to pay for therapies, treatments, tests, or whatever autism related things they could present a need for. I'm not sure how I would even get something like this started, although I know how to proceed once I do. Fundraising wouldn't be terribly difficult, holding charity auctions and walks and events, asking bands and bars and businesses to sponsor the charity. Having gigantic parties with local bands performing wonderful music and lots of people coming and donating.Giving those of us who would give anything to be able to provide some basic treatments and therapies for our children with autism, but who just can't come up with the thousands of dollars a month it costs, and whose insurance won't cover it, some hope and resources. So many ideas are bouncing around in my head. I'd love to get the ball rolling. It would be a simple bank account full of the funds to be distributed on a first come, first serve basis. The parents would only have to provide three things - a proof of diagnosis that their child is on the autism spectrum, a proof of monetary need, and some sort of information about the amount needed and what the treatment, therapy, or test is.

Thoughts, ideas, advice, donations?

From the inside out

2009-08-03T16:12:00.000-05:00

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective:

Autism is not an appendage

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

I wish my child did not have autism,

what they're really saying is,

I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Autism is not an impenetrable wall

You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.

And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.

Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.

Autism is not death

Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.

But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives--

but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.

This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died.

You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.

After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."

If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

Jim Sinclair.

A growing imagination

2009-08-02T14:44:00.004-05:00

One of the many things that contributed to Aidan's diagnosis of PDD-NOS was his lack of self-initiated imaginative play - or make believe. He could make stuff up that perfectly echoed whatever he was watching on a movie, and could sometimes play along with someone else's idea, but even that was rare and challenging for him.

Today, Aidan tore apart a cardboard box from a giant wall map we bought for him. He stuck the pieces on his arms, put his Optimus Prime mask on his face, and walked outside. "I'm a superhero," he told us as he ran out into the backyard. This time last year that would never have happened. Six months ago, that would have been unheard of. But today he made up the most awesome make believe superhero, and I could have jumped up and down with joy.

He still prefers to copy whatever movie he's currently watching for his play - the last few days it has been a noisy version of Cars. Right now his challenge to overcome is how to deal with the frustration that occurs when you have a plan for your imaginary story and it doesn't work. He will literally scream as though in pain when something fails to do what he had intended. Also, interrupting or even speaking to him while he's making believe can be hazardous to one's health. It's as if once he makes it into his own world, anyone who happens to speak to him is an intruder.

The leaps and bounds are amazing. I'm so proud of him, and I can't wait to see what he accomplishes next!

Alabama Autism Insurance Reform

2009-08-01T18:46:00.010-05:00

Alabama still doesn't require insurance companies to cover treatments and therapies necessary to assist children with PDD-NOS or other autism spectrum disorders. If you want to help, you can contact your congressman (or senator or representative or whatever) and tell them how important it is to you that the children you know with autism be able to have equal coverage under insurance. You are also welcome to donate to a fund I'll be starting soon for Aidan to be able to try to get him into as many therapies as possible while they'll still be beneficial to him. This article is very informative:

Do you know Jack (and Jill)? State mandates coverage for autism

Updated: 08/01/2009 05:02:03 PM EDT

Jack and Jill have autism spectrum disorders.

At first, Jack's parents thought their little Lego-building genius had a hearing problem. So, they brought him to audiologists. The doctors plopped headphones on the toddler, turned on a set of mechanical clowns who shook tambourines, played drums and clapped.

The clowns resembled the "It's A Small World" dolls at Disney World. Jack tilted his head in the direction of the sound, but his eyes often looked passed them -- wandering to the scenery behind the clowns, to a seam in the wall or to some colorful detail, the zigzag stitching in their costume.

The good news was that Jack did not have a hearing problem. It was something else. Something that took another two years and other specialists to diagnose -- pervasive developmental disorder, not-otherwise specified. PDD-NOS.

The diagnosis from the Yale Child Study Center when Jack was only 4 went down hard on his folks. It was harder to accept a decade later with their feisty daughter.

In a note to her parents, the day care informed the couple that Jill "is always the last one anyone picks" when it comes to choosing teams. And that Jill "is oblivious" to other people's feelings, holds crayons with an awkward grip and has trouble forming letters, coloring pictures within the lines, even when she tries.

The evaluations of their children set Jack and Jill's folks back $9,200 and the therapy with a speech pathologist twice a week for seven years cost another $70,000.

Their insurance refused to pay a dime. The policy excluded autism services.

This couple was able to afford these services out-of-pocket. Having an evaluation early allowed them to gain special education services for both children.

Countless others aren't so lucky.

When families can't pay for these evaluations, children start out behind the eight-ball, and as they grow older, they drop further behind their peers because either their disabilities or the severity of them don't attract the attention of educators at the earliest point where offering them services will have the most impact.

The picture however for kids with autism spectrum disorders is about to brighten somewhat. Connecticut is joining a host of other states that mandate group insurance plans pay for autism spectrum disorder evaluations, prescriptions, physical, speech and occupational therapy.

That shouldn't supplant a school's obligation to provide those services to students. But it's possible that given the tight budgets that everyone, including school systems, operate on, it's conceivable that it may. Schools might balk at continuing to pay for these services.

"While there are some very on top of it school systems when it comes to autism, that is not the norm," says Hal Gibber, executive director of Favor Inc., an advocacy organization for people with behavioral, developmental and mental health issues.

"Most of them will want to do as little as possible until somebody requires them to do more," Giber says.

And that shouldn't happen here when this law has the potential of making the difference between giving kids with autism spectrum disorders the tools to succeed in the neuro-typical world. "Schools often ask the question what is 'educational'?

They are mandated to provide for children's needs in so far they these needs are educational," says Dr. Ami Klin, director of Yale Child Study Center's Autism Program.

"For children with autism spectrum disorders, we've been arguing -- and many school districts agree -- that education is more than reading, writing and mathematics. It's a child's ability to succeed in aspects of daily living -- to navigate social interactions, communications and move through and engage in everyday life in their community."

Making an autism diagnosis is tricky -- even for the trained medical professionals. At Yale Child Study Center, teams of neurologists, psychiatrists and speech pathologists meet with youngsters for two days straight and ask parents, teachers and caregivers to complete a two-inch thick questionnaire, surveying a child's development, medical history, academic and social interactions.

It takes hours for parents to complete, and even longer for Yale to analyze.

These days, Jack sometimes makes honor roll at his high school. He works hard for every A or B he earns. The only subjects that come easy are algebra and calculus because those are subjects where there is no gray to Jack. Something is right or wrong. And he doesn't have to read his teachers' faces or his fellow students for the non-verbal cues, like a raised eyebrow, a smile or a grimace.

At home, Jack's nickname is "The Capitalist," owing to his ability to negotiate high baby-sitting fees, impose an early return surcharge and devise novel, legitimate ways of making money.

For her part, Jill, a fifth-grader, is reading the fifth Harry Potter book. When she meets somebody new or goes on a trip, her parents have learned to "rehearse" what she can expect to see or do. Consequently, they repeat themselves a lot. The upshot is that eases anxiety all around. And it gives Jill ideas for conversations.

MariAn Gail Brown, a columnist for the Connecticut Post, can be reached at mgbrown@ctpost.com

Oh, the Places You'll Go!

2009-07-30T18:07:00.002-05:00

This perfectly describes the journey our wonderful children with autism adventure through - and we get to travel the road with them. Thanks Dr. Seuss!

Oh, the Places You'll Go!

Congratulations!
Today is your day.
You're off to Great Places!
You're off and away!

You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go.

You'll look up and down streets. Look 'em over with care.
About some you will say, "I don't choose to go there."
With your head full of brains and your shoes full of feet,
you're too smart to go down any not-so-good street.

And you may not find any
you'll want to go down.
In that case, of course,
you'll head straight out of town.

It's opener there
in the wide open air.

Out there things can happen
and frequently do
to people as brainy
and footsy as you.

And when things start to happen,
don't worry. Don't stew.
Just go right along.
You'll start happening too.

OH!
THE PLACES YOU'LL GO!

You'll be on your way up!
You'll be seeing great sights!
You'll join the high fliers
who soar to high heights.

You won't lag behind, because you'll have the speed.
You'll pass the whole gang and you'll soon take the lead.
Wherever you fly, you'll be the best of the best.
Wherever you go, you will top all the rest.

Except when you don' t
Because, sometimes, you won't.

I'm sorry to say so
but, sadly, it's true
and Hang-ups
can happen to you.

You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You'll be left in a Lurch.

You'll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you'll be in a Slump.

And when you're in a Slump,
you're not in for much fun.
Un-slumping yourself
is not easily done.

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A place you could sprain both you elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right...
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it's not, I'm afraid you will find,
for a mind-maker-upper to make up his mind.

You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place...

...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a sting of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.

NO!
That's not for you!

Somehow you'll escape
all that waiting and staying.
You'll find the bright places
where Boom Bands are playing.

With banner flip-flapping,
once more you'll ride high!
Ready for anything under the sky.
Ready because you're that kind of a guy!

Oh, the places you'll go! There is fun to be done!
There are points to be scored. there are games to be won.
And the magical things you can do with that ball
will make you the winning-est winner of all.
Fame! You'll be famous as famous can be,
with the whole wide world watching you win on TV.

Except when they don't.
Because, sometimes, they won't.

I'm afraid that some times
you'll play lonely games too.
Games you can't win
'cause you'll play against you.

All Alone!
Whether you like it or not,
Alone will be something
you'll be quite a lot.

And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won't want to go on.

But on you will go
though the weather be foul
On you will go
though your enemies prowl
On you will go
though the Hakken-Kraks howl
Onward up many
a frightening creek,
though your arms may get sore
and your sneakers may leak.

On and on you will hike
and I know you'll hike far
and face up to your problems
whatever they are.

You'll get mixed up, of course,
as you already know.
You'll get mixed up
with many strange birds as you go.
So be sure when you step.
Step with care and great tact
and remember that Life's
a Great Balancing Act.
Just never forget to be dexterous and deft.
And never mix up your right foot with your left.

And will you succeed?
Yes! You will, indeed!
(98 and 3 / 4 percent guaranteed.)

KID, YOU'LL MOVE MOUNTAINS!

So...
be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
you're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!

---Dr. Seuss

2009-07-29T17:15:00.004-05:00

Interesting information about what we put into our bodies.

Feingold Diet - Petrochemicals part one

Feingold Diet - Petrochemicals part two

Mommy's Vacation

2009-07-28T22:11:00.004-05:00

So we left Aidan with Maw-Maw and Paw-Paw Saturday afternoon and took off to Atlanta for the weekend, and ultimately the Tool concert on Monday night. It was nice to be able to get away and have some time for just me and Jeremy with no schedule, and no worries. We got to go to the aquarium, Ikea, and the zoo, and we also ate at a yummy Meditteranean restauarant downtown.

Sunday afternoon Aidan called (via Maw-Maw) because he had crashed his bike and needed his mommy. I talked to him for a little while and he told me what had happened and to come home and I explained that Jeremy and I had been at the aquarium and wouldn't be home for a few more days because we still wanted to go to the zoo. He wanted to go too, but I explained he couldn't because we were far away and only mommy and Jeremy were going this time, but he could go next time.

Monday Maw-Maw said he was really missing me. She said he asked where I was, and she laughed and said he knew I was in Atlanta. Then he corrected his question, pointed at a picture of me and asked if that was Mommy. Then another of me in high school (Maw-Maw confirmed it was me), then one when I was around 2 (again Maw-Maw confirmed), lastly one of me as a newborn (which Maw-Maw confirmed). Then he said okay and walked away. As if he wanted to confirm I was real. Strange how his little mind works.

One thing I really noticed through having so much phone conversation with him (I called and talked to him this afternoon when we headed home) is that he is SOOO much easier to understand now than he was not even a year ago. I think it's mostly because we spend so much time and effort talking with him - not just talking at him, but forcing him to have a conversation with us, and correcting him when he says something wrong, or asking for clarification when he says something we don't understand. I'm so proud of the progress he's made.

And it was great to have a vacation too. Now I just need a vacation from my vacation...

How you can help:

2009-07-25T00:15:00.004-05:00

This is an article pulled from a magazine called The Autism File about how grandparents of children with autism can help their kids to deal with the diagnosis. Original author is Shannon Johnson in the July issue. Of course, anyone who knows someone with an autistic child should take this to heart. Just insert your name as needed.

Listen - without answers or solutions - just be there.
Provide meals, especially while the parents grieve, process, and plan.
Take the child or children often in order to give the parents respite and the kids a good dose of what only a grandparent (or aunt, uncle, or best friend's mommy, or mommy's best friend) has to offer.
Learn to cook new food if there is a special diet involved, and always have plenty of "legal" food on hand.
Be supportive. A parent is going to do anything they can to help their child grow and develop. You may not agree, but be patient and let the parents sort it all out. Take pictures at therapeutic horseback riding lessons and join in the Floortime interactions.
Get online. Join an autism community and get to know other families and other grandparents.
Put on your sneakers and sign up for that neighborhood walk-a-thon. Raising funds and awareness is just another way to love your family well.
Keep your opinions to yourself (unless solicited*). Autism isn't caused by too much television or a broccoli deficiency. Children are not disciplined out of autism, and beneficial therapies involve more than "a little tough love" or a spank on the bum. Those kinds of comments will only build walls between you and your children.
Carry over in your home, as best as possible, the treatments that the parents are using at home. For example, if the parents are ignoring a behavior rather than bringing attention to it, do the same. A consistent environment enhances good teaching.
Ask what you can do that will help. Sometimes the answer will be "Just give us some space." Sometimes the answer might be "Please come soon." Be respectful of the parents as they ride the waves of emotion that come with such a diagnosis.
Be available to accompany the parents on doctor visits and other such meetings. Children are often required to be at these meetings, but their attention span is short and having you there to entertain and interact with them will give the parents the ability and freedom to attend to the professional without distraction.
Allow yourself to love in a new and bigger way. This journey may shake your family to the core, but there is a rare joy and a rich reward when you love someone with autism with all your heart.

*my addendum

Aidan's Rocket Adventure

2009-07-24T22:25:00.004-05:00

Aidan went to the Space and Rocket Center today with his Maw-Maw, Paw-Paw, Great-Grandma, Great-Grandpa, and Uncle Matt. I worried about him - I won't lie. I know how he reacts to loud places and lots of people. Besides - the place is boring if you ask me! But he did great according to Maw-Maw. He had his difficult moments of course, but we've been working with him, giving him tools to cope with his difficulties. Impatience was an issue, but that's obviously a normal 5 year old issue. On the other hand, he really wasn't sure about the Davidson Center (this is where the house the gigantic Saturn V rocket that took us to the moon). Every so often someone would push the button and the sound of the rocket launch would echo through the massive building. Apparently once he was able to push the button himself he handled things a bit better.

What did surprise me was his enjoyment of the Mars ride. Again his tools helped him. Mom told him how it would sound and feel (to the best of her ability). She let him talk to some older kids who had already ridden it, and they assured him it was fun and were nice enough to let him go ahead of them so he could see the ride from the outside. It's one of those where you get in and the box just rocks around a whole lot but you have a big screen inside that makes you feel like a whole lot more is going on - sort of virtual reality I guess. Then the facilitator showed Aidan where the button was to stop the ride if he needed to get off (or anyone else did for that matter) and the ride started. At first he might have been a little scared, but he had a blast overall. And I'm glad.

This weekend he gets to stay with Maw-Maw and Paw-Paw while Jeremy and I go to Atlanta for a much needed vacation. He'll be staying with them for 3 nights. I know he'll be fine - and so will I! See you when we get back!