Christmas Lights and Humor

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

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

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

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

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!

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...

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

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!

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

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?

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:

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:

1. 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!
2. Don't make jokes about clumsiness or difficulty speaking, even with the neurotypical children – it can make me even more self-conscious.
3. Don't dismiss me as having nothing to say or refusing to participate or not paying attention just because I don't speak up.
4. 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.
5. 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!
6. 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.
7. Try not to plan class parties or field trips in situations that are loud or noisy.
8. 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.
9. 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.
10. 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.
11. 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.
12. 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.
13. 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!)
14. Don't point out the strange behaviors I may exhibit while upset or distracted.
15. 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.
16. 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.
17. 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.
18. 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?)
19. 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.
20. 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

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

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

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?

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

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

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

I selected this post to be featured on my blog’s page at Autism Blogs.

Meltdowns 101

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

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.

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?!)

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.