Open letter to mothers of children recently diagnosed with Asperger’s…


Dear Mother of an Aspy:

Every child is unique, and children with Asperger’s Syndrome are even more so. While I can’t predict what your path with your child will be, I hope to comfort you with my family’s story.

I noticed really early in Jake’s life that there was something peculiar with his development. I read parenting books like bibles, being a nervous first time mom, and though he’d hit his milestones, they’d all be hit in different ways than the books explained. From a very early age, he would get fixated on digital numbers. He couldn’t walk by a microwave without holding his breath and staring with a very intense look on his face. He played with all the normal toys that kids his age would play with, but he would focus on them inappropriately. He would spin the wheels on his car and just stare at them. He had a Halloween toy that lit up and sang, and he’d push the button to light it again and again and again for hours… Unlike most kids, there was no such thing as ‘out of sight, out of mind’ for Jake. We’d try to redirect him, but it was to no avail. We’d put his Halloween toy away and he’d scream and cry till we brought it out again. For HOURS. He’d wear batteries out daily. Most kids his age couldn’t even play with a toy for more than a few minutes, and he could fixate on something that drew his attention forever.

He had a lot of words, but his words were difficult to understand to anyone other than family. Because no one could understand him, he was terrified of other people and extremely dependent on me. I couldn’t even leave him with grandparents without having a panic attack that he’d miss me when I was gone.  Although I understood him best, I couldn’t understand him well, either. So… we had lots of meltdowns for many years. I thought I was the worst parent on Earth. I asked his pediatrician for help, but Jake seemed to be hitting his physical milestones well enough, and was even ahead in others. (For instance, he knew a ridiculous amount of shapes in the Baby Einstein book at age 18 months) The pediatrician just decided he was fine. We put him in a local preschool/daycare hoping to develop some of his social skills. Shortly after, his day care teacher nervously pulled me aside and asked if I was familiar with autism. Her words blurred and I remembered hearing her say something about never being able to function in a normal kindergarten at this rate…

Her words and her implications hit me like a ton of bricks. The moment she said them, I knew where the conversation was going, and it all came into focus. Part of me was relieved. I KNEW as a mother something just wasn’t quite normal about his development, even if everyone kept trying to convince me that I was being an over reactive parent. The other part of me was terrified. As anyone else would do, I immediately went home and consulted with Dr. Google. Jake had loads of the warning flags, but not all of them. As per the advice of his daycare/preschool, we consulted with the Birth to 3 program. (Not sure where you’re living. If you have a similar program, definitely look them up. They are a fabulous resource.) They came out and did a formal educational evaluation with Jake, and sure enough, he had flags for educational autism. It’s a very long story, but his speech issues were not typical enough to fit the bill for service, though he was clearly behind in speech. He didn’t follow the typical patterns that many educators looked for, and there was no way to make room for kids with their very own unique speech deficiencies. So, over the next year, we ended up pursuing a medical diagnosis with the top specialists in Madison.  He was diagnosed around age 3.5 with something between PDD-NOS and Asperger’s syndrome. Meanwhile, the Birth to 3 program had been working with his phonics and other PLAY type treatments. Slowly, things seemed to get better.

At the time of his diagnosis, I scoured the internet and became a lay expert in all things autism related. I was confident if I just kept looking, I was going to find a cure for this. But the more I researched and the more time passed… the more I realized I didn’t really want to change the little guy Jake was becoming. He is just SO smart. He sees the world in such a different way. He’s very literal. (For instance, we once bought a white area rug for the living room. Very silly for a mother of 2 boys, but for a whole week it looked great. Anyhow, at that time, I told Jake “from now on, we needed to eat all our food in the kitchen”. He started crying very hard. “But MOMMY, if I eat ALL the food in the kitchen I will get a bellyache!” Don’t ever ask him about letting the cat out of the bag…) It took a long while but eventually, I understood that autistic brains perceive stimulus much differently than the average brain. It might appear as though they are not understanding, but often times, they are just getting so many simultaneous stimuli that it’s hard for them to filter and focus on an individual stimulus and make it meaningful. And, as such, they are often extreme in their behaviors and they tend to look for rituals so that they don’t have to put so much effort into filtering out what belongs and what does not. Sadly, stimuli often includes all 5 senses. Food tastes more confusing, clothing might feel more uncomfortable, the sound of water is more encompassing and distracting…

Jake has always had a major focus or passion that he got stuck on during different stages of his life. His first love was that stupid Halloween toy. Then, trains. All things Thomas. We had to lock the deadbolts on our doors because he would hear the train whistle before us and bolt for the door. Gradually, his love evolved to Cars, (thanks to Lightening McQueen) and we had cars lined up like trains around the house in weird patterns. You couldn’t touch or rearrange them, or he would flip out. Even if you moved them while he was sleeping, he’d know. His specialist explained to me that ordinary children ‘want’ their toys in a particular order, but autistic kids NEED their world in a particular order, even if it just appears to be random disarray to us. Currently, and for quite some time, his focus has been video games. And, although I did not really want to raise tv/video gaming kids, it has turned out to be a blessing. First of all, we got Jake really engaged in sports by buying him new games like FIFA soccer and Madden football. Second, as his peers have grown older, video games have become his portal to making friends. Though he was great with adults, peers were a lot harder to figure out. (Turns out that other 4 year olds are not interested in how much bigger Lightening McQueen’s horsepower number was, no matter how many times he inappropriately asked them.)

Jake was entered into a Title 1 language class. The rest of his class did not speak English as a primary language in their homes, so Jake was a good example of English as his phonics improved. That helped a lot with his confidence in meeting people. As they were teaching young Hmong and Hispanic children our basic social rituals that most people in our society take for granted, Jake was learning right along with them. (Like eye contact. I had never noticed it, but Jake would never look right at people even when talking to them. He always looked sideways at them. Hmong children are often taught to look downward as a sign of respect. They learned together. ) It was fantastic.

We kept developing IEPs, (individualized educational plans) with his school, and against all odds, they all thought Jake would be able to handle a normal kindergarten classroom, with the help of in-class support from the Special Ed team. He had some issues, mostly with motor skills and writing, and not being able to transition into new ideas easily, but ultimately, he did really well. He transitioned into 1st grade with special education support, but shortly after the beginning of the year, they asked if they could stop coming. Another IEP was done, and he was assessed to no longer need support as he was operating at or above the level of his peers. That year felt tough, and he was frustrated a lot, but we made it through. By 2nd grade, his teacher asked me if they had made a mistake in his IEP, because none of the things she saw in his record seemed describe him. He really blossomed that year. By the end of 2nd grade, his teacher asked me if she could recommend him for the school’s TAG (talented and gifted) program. After some testing, he qualified for Reading and Math based TAG pull together classes. What a change in just a few years!

I adore his 3rd grade teacher, who was kind enough to do a loop class and is now his 4th grade teacher. He is still very involved in the TAG classes and really enjoys the challenge. His grades are impeccable. He has played soccer since first grade, which is really fun now, though it was challenging at first. (It really bothered him that he understood many of the FIFA rules, and young kids were not forced to abide by each of the rules… but eventually, he learned to relax and to follow the rules the way they were being enforced at that level…) We had similar struggles with his social development. He was a little awkward, but other kids would eventually invite him to play. Unfortunately, he really wanted to play football, but he didn’t want to allow other kids to break the rules he knew to be true to the NFL. The other kids would perceive him as bossy and he’d no longer be invited. It broke my heart because I knew he desperately wanted to play with the other boys and belong. Eventually, though, he somehow figured out how to make his way. He now has a group of friends that loves video games, and that has been his bridge to friendship. It didn’t take long for his new friends to get use to his personality. They explained how they wanted to play, and he loosened up. Now, it seems like we’re running every weekend to a new birthday party or play date. (Poor little brother Ben is SO jealous! But his time will come…)

Jake is honest to a fault. If I ask him if he hit his brother, he’ll admit to it, but give me a long list of reasons for justification. (He’s my lawyer in training.) My younger son, when asked if he hit his brother, will distract me and tell me I’m pretty and ask me an unrelated question. Gotta love ADHD. (He’s my politician in training. Always knowing what to say and when, and distracting you with the perfect smile.) Although there were some really rough years, I’m so proud and blessed my boys have the issues they have. It makes them so unique. They think so much differently than I do, and sometimes their perspectives give dimension to the world and makes it that much more beautiful.

I could go on forever, but I think you probably were bored a few paragraphs back. I’ll leave you with some parting advice. Your child likely feels comfort in stability. Always love unconditionally. Work your hardest to understand your child, but don’t let Asperger’s Syndrome be an excuse for inexcusable behavior. You’ll learn what your child is capable of, and you’ll need to learn to demand that. Be consistent in your expectations, but open minded when confronted with new solutions. Consider studying books about discipline options, such as Magic 1-2-3. (Our lifesaver!)  At the time of our first diagnosis and still on occasion, my husband and I, our friends and even our parents seem to be unable to believe or comprehend that our kids have any shortcomings at all. Or, conversely, they occasionally expect what often seems unreasonable from the boys. (I cannot understand why my husband finds it so hard to believe that Jake can’t tolerate the feeling of tags in his shirts… It’s not that he doesn’t want to wear tags. It’s that when he has a tag irritating him, he really feels that tag bothering him. That tag distracts him from filtering out the 400 other things he needs to in order to focus.) Other people might judge your parenting skills because your son reacts differently to the same stimulus that other kids react favorably to. Trust your motherly instincts and trust his reactions, because you know better. Be his advocate. In the same way he has to filter his own perceptions, you need to filter the negative voices. Educate others when you feel comfortable doing so. Ignore the ignorance of people who are of no consequence. Defend your son when you deem appropriate. Someday, this challenge will make you a profoundly stronger person. Autism truly is a gift in it’s own right.

Congratulations on having an awesome and unique Aspy kid! Welcome to a whole new world of thinking.

Sincerely, the proudest Aspy mom around,

Mindy…

P.S. If you should ever have questions or comments, drop me a line. It’s important you find a support system. Who else will you vent about supermarket meltdowns to? Not to mention, we’re here to cheer you on with all your accomplishments!

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About Mindy

I am a mother of two boys, a disc golfer, a former derby girl, a sonographer and an aspiring writer. Sometimes words and events replay in my head endlessly until I let them out. I am verbose. I have lots to say all of the time. If there's something you'd like to know, you'd be better off asking.
This entry was posted in Asperger's Syndrome, autism, Jake, Life Lessons, Uncategorized. Bookmark the permalink.

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