Whoa! Stuff!

Wow! It's been forever since I posted here. It's even been awhile since I posted anything important on Facebook. It's been a super busy summer and is shaping up to be a super busy fall as well. Aidan did Cub Scout summer day camp, he had a camp-in at a Science Museum (they had full run of 4 stories!! Including the shark tank!!), played a day at the beach, spent time in Chattanooga with Mawmaw and Pawpaw, and even got to go visit Papa and Grandma Holly twice before Grandma Holly passed away this month.


In June Aidan was officially diagnosed with ADHD and the doctor started him on Intuniv which is a non-stimulant medication that was adapted from an old blood pressure medication called Tenex. Now that we've got the dosage figured out, Aidan takes 2mg a day in the morning. The difference is amazing. He has a much easier time communicating with us, he has found his volume control instead of being at the top of his lungs most of the time, he has a much better control of his temper, and is finding it much less of a problem to focus on his work at school and at home. It's actually really fun to be around him now that he's staying out of trouble and doesn't get aggressive so easily.


School started back in the middle of August and since then Aidan has only had ONE stick pulled (it's like a check mark on the board, or one time of getting in trouble). It was for talking when he wasn't supposed to, which every kid is going to do at some point. Last year he did that at least once a day it seemed like. His first progress report shows he has 2 A's and a B - the B is in English. He loves Math! He's making friends and doing great at the new school. Friday we got to go on a field trip to see Disney on Ice (how is that educational?) which he was so-so about. Most of it he wasn't interested in but we made it through.


Last night he had a Cub Scout Pack meeting. They gave out all the awards earned over the summer, and I'm pretty sure Aidan earned more than any of the other boys there!!! Here's a list of what he got:

-BB shooting belt loop

-archery belt loop

-hiking belt loop

-kickball belt loop

-art belt loop

-science pin

-one year service pin

-wolf badge (which requires a LOT of work to earn!)

-1 year service pin

-Outdoor Activity Award

-Gold Unit award

Seriously guys, the kid is amazing. Now he'll start working toward his Bear Badge and of course all the other stuff that he can find to get into and earn. Plus he's selling popcorn on top of everything (let me know if you're interested and I'll post the website for you to order or if you're local to me then I can put your order down). We're so proud!!!

Stay tuned, I'm sure there will be even MORE amazing things to brag about on this kid.

A Different Kind of Meltdown

I should have guessed that having Game Day and an assembly at school instead of the normal routine would throw off Aidan's whole day. He was apparently really good all day, but then at the end of the day ran in the hall and when a teacher stopped him and told him to come back and walk he refused to look at her or talk to her. He was cranky in the car about buckling up. Then when he got home I asked him to feed the dogs before he got snack. With lots of griping (as per usual) he got them food, got Muffin the old dog the WRONG Food even though he knows that she ALWAYS eats the same food as Harley the young dog, and then because of his attitude he picked up when corrected for getting the wrong food, he slammed Harley's bowl on the floor and made all the food fly out. I fussed at him and told him to clean it up. At this point the meltdown began.

Normally Aidan's meltdowns involve him lashing out at the environment around him, especially me or Daddy or whomever else is around. Today it was different. He screamed repeatedly that he wanted to kill himself and starting punching himself HARD in the head. I had to hold his hands and try to calm him down for about 15 minutes before he stopped trying to hurt himself. He cried for a while after that, and screamed he hated me several times, but he seems mostly okay now. Well, except that he's still mad at me and wants to pack up his bags and Harley and live in the middle of nowhere and doesn't care if he starves to death as long as he's away from me.... When did I get a teenager?

Anyways, I'm obviously really concerned about the self-harm during the meltdown today. Every so often he will get frustrated and hit himself, although rarely in meltdown mode. Today was so different and I just didn't know how to react. What should I do? He thankfully has a therapy appointment next week.

Cub Scouts

So we started Aidan in Cub Scouts this year. We are a long line of Scouts in my family, including my Grandpa and my Dad. The den really seems to adapt to Aidan's oddities, although he's still trying to find his place in the group, and they sometimes bounce him around so they can sit next to their more familiar friends, but that's just little boys I suppose (the whines of "he took my chair..." get old regardless of the boy).  Aidan has already accomplished his Bobcat badge, is working hard on his Wolf badge, has earned the physical fitness and science belt loops and bridged with his Den last night over to Bear Cub.

Apparently Aidan LOVES Cub Scouts. Other than talking about Storm Chasing I've never really heard him plan for the future before (and this included Storm Chasing too). He told me on the way home that when he grows up he wants to have 2 sons and he will be a Scout leader in between storm chasing, and that he wants to give his son his wolf neckerchief and hat one day.

This summer they'll have camp outs and summer camp and it will be interesting to see him react to all of those. He's also having to learn to be less bossy, less competitive, and to work as a team and cooperate, all of which are skills he desperately needs to learn. So far I'm really glad we've put him into Scouts, especially after our conversation about the distant future today.

My Support Group - Thank You

People Who Make Raising a Child with Autism Easier on Me

• My husband – When I met my husband, Aidan hadn't been diagnosed yet. He was a crazy child who wasn't potty trained, wasn't verbal, had meltdowns, and left me ragged and slightly insane. I'm not sure why or how he managed to stick around through Aidan's severe autism at the time and my untreated bipolar disorder, but somehow it happened. He stuck around through the poop-tastrophes and violent screaming fits, and supported me as I finally took Aidan to Vanderbilt to find out if our worries that he had autism were true. When the diagnosis was PDD-NOS (or high-functioning autism/atypical autism, as Dr. Warren explained it to us), Jeremy took it in stride, supporting me, helping me find the right place and treatment for Aidan in the aftermath of the diagnosis. He eventually allowed my son and I to move into his house with him, in spite of Aidan's penchant for destruction. When I decided that it would be best for Aidan if I quit my job so I could spend more time with him after school, Jeremy supported that decision and never looked back (or maybe he did, but he never really said anything). He's been beat up, kicked, scratched, screamed at, and even spent 2 sleepless nights at the hospital with Aidan and I when Aidan busted his head. Last November we were married. Jeremy still amazes me at how willing he is to be Aidan's daddy and how much he loves the kid and actually takes the time and effort to help Aidan grow and blossom into the best he can be. I know lots of autism moms who are nowhere near as lucky when it comes to their spouses. I'm glad I'm not one of them.

• My parents – I'm one of those people who grew up with two sets of parents thanks to divorce. It was complicated and not always easy, but in the long run it was a great thing for Aidan because he gets more grandparents. My mom and stepdad are amazing with Aidan, keep him when they can, and are super supportive. Mom and Daddy went with me to Vanderbilt when we had Aidan diagnosed, and Mom has come with me to IEP meetings, doctor appointments, and who knows what else. My Dad and stepmom, Holly, come down as often as they can to spend time with Aidan – Dad even came down for Aidan's first Cub Scout Blue and Gold Banquet to see him get his Bobcat badge! None of them have ever questioned the choices I make for my son; they share new autism studies I might not have seen; they treat Aidan like he's just a normal little boy but accommodate his often frustrating needs without so much as a blink of an eye.

• Aidan's autism unit teacher – Annie is amazing. Seriously. She took a kid who spent more days in the principal's office than in the actual classroom, and taught him how to be a student, how to learn in spite of his limitations, how to interact with his peers. Now he's able to spend all day in a mainstream classroom with no aid! It's so helpful to have a teacher who is in constant contact with me, and dreams just as big as I do for my child. With all the horror stories of people who've had to go into battle with their child's teachers at each IEP meeting, I'm grateful that we've only once had to do that.

• Aidan's babysitter – We don't always get along. She may not always agree with how I handle Aidan's issues. But when it comes down to, Wendy has a gift. She was his babysitter for quite some time while I was still working, and even now keeps him pretty regularly. Somehow she just has a certain touch that makes Aidan want to act right and enjoy the world around him. She's not professionally trained to work with kids with special needs, but Aidan isn't the only special needs kid she's taken care of and she has a special touch with all of them. I'm grateful, even when she drives me crazy, that she loves my kid and helps him to be his best.

• My best friend – How many times has this girl listened to me whine and moan and get all pissed off at whichever facet of the world has gone up against me or my son. She never judges, and she defends my choices and reminds me that I am, in fact, a good mom. Sometimes I need just that. And sometimes I just need to go get my nails done and get a drink – she's good for that too.

• Aidan's pediatrician – Dr. Denny. He answers my questions honestly, doesn't look at me like I'm crazy when I ask questions about Aidan's weirdness, and has always made sure I was referred to the right place and people to get the right help for Aidan. He's the one who helped us get him speech therapy, the one who sent us up to Vanderbilt for Aidan's diagnosis. He makes sure he sets aside extra time for Aidan every time we have an appointment and asks lots of questions to make sure he understands everything about Aidan's progress or issues. He keeps himself educated and informed about the latest science and breakthroughs in the autism community. I hope everyone is as lucky to have a great doctor on their side.

• The autism community – You guys are amazing!! I don't know what I'd do without my fellow autism moms and dads who commiserate, yell, cry, laugh, and question with me at all hours of the night and day. It's such a relief to be able to ask a question and have an answer from a dozen fellow parents. It inspires me to offer the same support and love to people in my position – because I know how it felt when Aidan first got diagnosed and I didn't know ANYONE who had a child on the spectrum and so I had no idea what was normal or what to do. I hope I can be the same support for all of you as you are for me.

Thank you to all of you. You're the best and you make my journey with Aidan through the world of autism so much easier and more fun. I hope all of you have as much support on your journeys as I do on mine.

First Visit to the Psychiatrist

Aside from being made to wait for freaking ever, Aidan's psychiatrist appointment went well. I felt that the doctor asked all the right questions both of myself and Aidan, that he didn't want to just automatically jump to medication, that he understands autism and how it affects Aidan, and that he was interested in engaging Aidan and helping him. He set us up with a therapist to help Aidan with anger management, impulse control, and social skills although he stated that he isn't sure how effective it will be. He feels that while Aidan is intellectually capable of understanding the things the therapist can share with him and help him with, Aidan's level of emotional maturity, and the developmental delays therein, can make it difficult for Aidan to actually carry those tools into practice.  He said that right now, although Aidan may intellectually be aware that A leads to B which leads to C, he may not have the maturity to realize those consequences and how they apply to HIS actions in the moment. That plus Aidan's lack of impulse control may make the therapy less effective, but worth trying nonetheless. As I said, the doctor acknowledged Aidan's delay of emotional development, but he said he didn't feel like it would be a long term problem. To quote him: "The difference between a 4 year old and an 8 year old, emotionally, is quite a lot, but the difference between a 22 year old and a 26 year old really isn't much at all."  I'm not sure if the age differences he chose were random or if that's how far behind he feels Aidan is. We know with other stuff like speech and toilet training and cognitive abilities he's always been a year or 2 behind, but I don't really have anything to gauge his emotional maturity by. 

Aidan's first therapy appointment is next Thursday, and then he returns to the psychiatrist at the end of June. We'll keep you posted!

Introduction: A Thinking Person's Guide to Neurotypicals

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

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

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

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?

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

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?

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.

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?

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.