Before you correct me, I know that Asperger Syndrome supposedly doesn’t exist anymore, it’s just considered to be an Autism Spectrum Disorder. But from what I’ve seen so far, nobody has stopped using that term. So there’s that.
Then there’s the fact that this is a DIY blog. Well, guess what? I can write about anything I want.
From: Yard Makeover 2010
This is my experience, as a complete novice to the world of child study teams, sensory issues, and ”the spectrum” in general — at least from the parental side — I was a high school math teacher before I popped out my 2nd and 3rd kids. So while my hindsight is perfectly clear, I’m going to lay out my fuzzy experience as it happened. And yes, it’s crazy how ignorant I am about all of it.
People Think I’m nuts for suggesting that my son might have Asperger’s. They’ve met him and they just don’t think so. But to be fair, people think I’m nuts for many reasons. But I’m talking about friends, family members, and even casual acquaintances who think I’m crazy when I mention I think my son might have Asperger Syndrome.
Some Background on My Kid
My son G — not his real name, of course, but one of the dozen or so nicknames he answers to — is 6-years-old and the cutest freaking thing you’ve ever seen. Unless you’re not a fan of shaggy blond hair, blue eyes, long eyelashes and smile that will melt your heart. G is short for Genius, which I’ve called him since he was a baby. I think I started calling him Handsome, but realized I was pigeonholing him, so I began to alternate with Genius. He still answers to both today.
G is the baby of the family, the youngest of 3, and my only son. His sisters are 13 and 8, and they love him for his unique personality and the hysterical things that come out of his mouth. We also call him Moe-Moe. I even have an Instagram hashtag for him and his sister Lulu — #luandmoe
He really has had an idyllic childhood, if I do say so myself. I stopped teaching when his sister was born so I could spend all day loving on my babies. I made time for a few crazy DIY projects while they napped. G’s pregnancy was easy, he was the largest of my 3 babies, and he breastfed like a champ for 15 months. We bought our house 5 weeks after he was born, and moved into an awesome neighborhood. As soon as we moved in we found a bunch of families with kids the same age and was able to join a playgroup with other stay-at-home moms. We are still very close with all those families 6 years later.
As a toddler, G liked to run around our yard naked and carefree. He was a natural explorer. After he came inside and put some clothes on, he would snuggle with me for hours. I love that sweet little guy! Sometimes I worry I may have loved on him, or babied him, too much, or carried him for too long, but he loved all of it. And sometimes he loves on other people too much… not everyone appreciates it like I do.
Or sometimes he is wicked shy, but not very often. He definitely doesn’t like his picture taken, usually. He is never in his own birthday party picture. Parties in general are hard because they are loud and disorganized and, when it’s his own party he doesn’t like having all that attention on himself. I get it, I don’t like it either.
Now that G is 6, he loves to yammer on about turtles, he loves to give detailed descriptions of his latest “inator” (shrinkinator, Rainbow-inator, etc, ala Phineas & Ferb), and of course he loves the vast worlds of Lego and Star Wars. If you’re over 12, you would be thoroughly entertained by him. His oldest sister’s friends love him! In fact, if a teenage girl happens to be at the playground at the same time as G, he’ll likely take her by the hand and lead her all around the playground trying to get her to play something-or-other with him that she can’t understand.
Now you might be thinking that this doesn’t seem like a problem at all, that he is just a ladies man. Well, he definitely doesn’t have any stranger danger, that’s for sure. It just never occurs to him that this random teenage girl doesn’t want to hang out with him. Kids his own age are much less accommodating than the teenage types. His peers are turned off by his odd behaviors, floppy body, irritability and explosive outbursts, and his touchy feely nature. They often don’t want to hang out with him. He does best with younger kids, like 3 or 4-year-olds, teenagers, and adults.
In school he doesn’t really struggle academically, it’s the everyday skills and interactions I worry about most. He’s at the same highly-rated public school for the fourth year — the one I pay a shit ton in property taxes for — so he’s pretty comfortable there. But the transition from preschool to kindergarten was pretty rough. Simple things like the fact that the bathroom was no longer attached to the classroom, and it wasn’t as acceptable to ask the teacher to help you with your pants, that had me worried. I still worry about the bathrooms because kids often get bullied in there and he is very susceptible to teasing, because he doesn’t realize what’s going on. He was a prime target last year as the little boy with no urinal experience, ugh. It didn’t help that G didn’t know how to get his manhood out of his pants without dropping them to his ankles. Despite me fully believing this was my husband’s domain, I worked with G to perfect his urination skills at home. But it didn’t make me worry any less.
And with good reason. He had more than one accident last year, even though he had been potty-trained, and accident free, for years. The fact that he had a ridiculously strict teacher who didn’t always acknowledge his need to go in time, definitely didn’t help. Nor did it give him any street cred with his classmates.
I gave up trying to teach him to successfully operate buttons, snaps and zippers, at least for the time being. I bought him “comfy pants” instead. I handmade his Halloween costume last year and this year he wore Batman PJs because they are comfy and easy.
Don’t even get me started on his kindergarten teacher, or his “afternoon teacher”, as he referred to her until late spring, when he finally learned her name. Mrs. W. What a freaking witch! The first week of kindergarten he was not allowed to eat his snack, twice, and had to sit there and watch all of the other kids eat. Why? Because he forgot to take his snack out of his bag upon arrival. She did not allow theses 5-year-olds to go back to their book bags if they forgot her procedure. Are you freaking kidding me? I wigged out. And I am not that parent that ever calls the school. Ask Smart Jr, I don’t like to get involved. Let the teachers teach, is my motto. Poor G didn’t even realize he was being bullied by his teacher and so he never said anything. I heard about the whole thing from one of my friends, because her kid came home saying Moe-Moe didn’t get to eat his snack, again. Let’s just say I put an end to that, but Mrs. Witch never spoke to me again all year. God forbid I should have received any feedback about my unique little man. You would think that Mrs. W, a trained professional, with over 20 years of teaching experience, would have given me some insight into my son’s educational progress. Nope. She just recommended he get basic skills 6x a week when he got to 1st grade.
As I said earlier, G had already been going to this school for 2 years before kindergarten. Of course, I had to pay for inclusive preschool, because he was one of the regular ed example kids, who the classified kids should aspire to be just like. Yeah right! He cried every day from the end of November on. I’m not sure what changed, but the 3-year-old kid who was happy enough to go to school every day for nearly 3 months, all of a sudden freaked the hell out. His (special ed) teacher, Mrs. S, would tell me every day, “He cried 20 min.” “He cried an hour.” “He cried the entire 2.5 hours.”
To say G hated going to school was an understatement. I thought about taking him out. I mean he didn’t really need to be in school at 3 anyway. But I agreed with my husband that it would probably just make it worse later when he had to go back. He was having issues at home too, so it wasn’t entirely the school environment. He didn’t like to leave our house for much of anything. Except sometimes when he left without any fuss, but we never knew what his mood was going to be like on any given day.
When Mrs. S finally got tired of dragging him from my car to the school door every day, she called the district behavior specialist, who unbeknownst to me, greeted us at carpool line one morning. His teacher had never mentioned anything about it prior, nor did she give me any indication of what went on when I picked him up. I had to ask. Seriously, what is wrong with people? I didn’t get much information in return, either, and was told there would be nothing written up about this specialists’ visit. Great.
Frustrated and devastated that I had to forcibly dress my child every morning, holding him up between my legs while pulling his clothes on with my hands, I would cry daily. I had to hold him down with one hand on his chest, while strapping him into the car seat against his will. I finally made an appointment with the school’s child study team. Clearly they would have some answers.
Or they would completely suck! They refused, refused, refused to even evaluate him. Even though I had been told by multiple people that the school was obligated to perform an evaluation if I requested it. His preschool teacher, Mrs. S, the same one who dragged him into the building every day, sat across from me and stated, “It must be a home issue, because he’s perfectly fine at school.” I kid you not. I had to force myself to not leap across the table and strangle her. Bitch.
Long story short, I had a complete conniption fit, banging my fist on the table, storming out before the meeting was over, threatening to bring in an a lawyer, and slamming the door behind me. My mild mannered husband stayed after my departure, and was able to inform me that the child study team had reluctantly agreed to evaluate him. No words for these people.
So evaluate him they did. They did the absolute MINIMUM they could and still be able to call it an evaluation. The whole thing pissed me off so much I threw the freaking report out after I read it. Pointless. Looking back I should have insisted they pay for an independent evaluation, but I foolishly thought the CST knew what they were talking about and had my kids best interested at heart. I was wrong.
The biggest saving grace to G’s education thus far, is that he had an amazing teacher in his 4-year-old preschool class. Mrs. H witnessed the dragging every morning the year before, and was determined to make his second year different. He excelled. And she loved him to pieces! He wasn’t without his quarks, and she’d tell me things like, ‘He is completely zoned out during story time. Totally not focused, but never disruptive to the other kids. You would think there was nothing going on in his head, but whenever I ask him a question about the book, he would answer me with a very deep understanding of what I had just read.’ She would also tell me that his cutting and writing skills were atrocious, but that he was a boy.
Mrs. H mentioned that we might want to look into ADHD as he got older. But mostly she just loved on him like a grandma and he flourished.
Then there was kindergarten. Typical of New Jersey schools, our district only provides a free half-day kindergarten, so I was forced to pay the school district over $4K for G to attend “full day” (9am-3:25pm) school. The portion I paid for was called enrichment, and he referred to his enrichment teacher, Mrs. S, as his “morning teacher” for at least 7 months. I paid the money because I knew he would need the full day of school to learn the same amount of material his sister had learned in half-day.
The enrichment teacher was much better than that which Ms. W, but he still had issues in that class. His teacher sent home a paper the second day of school with a note on the top saying, “G refused to finish.” Apparently he was supposed to write his full name 5 times on this lined paper. I asked his teacher about it the next morning and she told me she held G back from free time because he refused to write his name. I wanted to cry for my kid that first week of school. I asked her if she had ever seen him write his full name. EVER? No, she had not.
So why did she think he would be able to do it now? The kids didn’t write their full names in pre-K, so why would you expect him to know the first week of kindergarten? This kind of situation freaks me out. It makes me stress about his school day. He’s being punished for not doing something that he has never learned to do. He is going to hate school!
We’re also talking about a kid who basically refuses to hold a pencil. I worked with him a bunch in preschool just to get him to draw. It wasn’t until I bought washable window crayons and let him draw on the patio doors that he would ever even try. I am happy to say that he draws and cuts paper constantly now. It drives my mother crazy.
I Started Asking Myself This Summer — Is it Asperger’s
I am not even comfortable typing those words. Is it Asperger’s? Who am I to venture a diagnosis? And you’re probably already shaking your head, saying I am a hypochondriac who watches too much Parenthood. It’s okay, most of the people in my life are doing the same thing. But I am more afraid that I already know the answer – and it’s yes.
This summer was eye opening for me. I took the kids with me to spend the summer at my mom’s beach house. While I may know many people in the town, because I spent every summer growing up there, my kids knew no one. After a month, it became more and more obvious to me that G doesn’t interact well with his peers.I enrolled Lulu and Moe-Moe in the daily vacation bible school, which was followed by choir practice. There is a little religious concert every summer performance by kids ages 3 to 7. G and his sister went happily every morning. When I picked him up the teacher would mention that he doesn’t engage, instead he wanders around the room, and never joins the circle. Apparently, the teachers don’t tell the kids to come sit down, they have to make the decision to do so themselves. G knows how to follow direction. He likes structure and this sit-down-if-you-want-to-or-don’t attitude wasn’t working for him. An assigned seat would have worked well for him.
I gave G a reward every day if he gave himself a good report – and his sister would confirm or deny his findings. Things were going well, still no friends, but not in any trouble, until G realized he was going to have to go on stage to perform in front of people. He was wigging out a bit, but I figured he’d come to terms with it when he willingly went to practice the following day. Nope.
This still pisses me off to think about – I waited outside for my kids to be dismissed, as usual, and out they came. G immediately tells me, “I had a bad day.” Before I could respond, this woman comes barreling outside in a tizzy and proceeds to yell at me for 5 minutes in front of all the other parents. G has his head buried into my side, arms flung around my waste, while she spews hatred about him for all to hear. “Blah, blah, blah… It’s not like we’re kicking him out, we just don’t want him here anymore. He is [basically evil] but he can still have his t-shirt, as long as he sits in the audience.” Um, I paid $50 for him to be in your little show, so yeah, he’s getting the t-shirt all right. But I said nothing. I figured if this was the attitude of the youth pastor’s wife, then I definitely didn’t need my kid exposed to her any longer. Done with that.
In the afternoons my kids went to swim camp. I got a call from the director on the first day because G refused to go in the pool. I wish I could say that was the only phone call from the camp that summer. It was not. Thankfully G’s teacher was amazing and he made great progress, but he could still not swim at the end of the 4-week camp. (60 half-hour swim lessons)
We didn’t spend as much time at the beach as I had hoped. I found I just didn’t have the energy most days to fight with G, who never wanted to go. He’d always have a good time once we got there, but getting there always involved tears and screaming.
One day at the beach a kid he knew, and considered a friend from VBS, walked by while G was digging a hole. G tried to get him to come over and help him dig. “Quinn, Quinn, Quinn, Quinn, come over here and dig. Come dig a hole with me. Come dig a hole with me,” and because the little boy was weirded out by G’s excitement, the kid kept walking. G’s natural reaction was to grab Quinn’s hand and try to pull him over to the hole. It ended with me having to make G let go of him and then Quinn ran away. Honestly, G probably didn’t even call him by name because he can never remember anyone’s names. But maybe he did, I can’t remember for sure.
So I made up a rule: You can ask someone a question 2x. After that, you have to drop it and assume they are not interested. And that they are rude.
His own sister wasn’t much better. I talk to Lulu often about sticking up for her brother and helping him, instead of making situations worse for him. She is 17 months older, one grade above him, and MUCH more mature. Because she’s a GIRL, I know, that doesn’t mean my son has a condition, other than being male.
I took the two of them, and one of Lulu’s summer friends, to a new playground and reminded Lulu to include her brother because he did not bring a friend. G was actually fine playing by himself for a good 15 minutes, but then I hear over a crowd of 100+ people, “Lulu, Lulu, LUUUUU-LUUUUUU, LUUUUUUU-LUUUUUUUU” over and over. I look up to see him chasing her (and her friend) around the playground. You would have thought she stole money from him, or stabbed him or something, the way he was yelling, but I’m sure he just wanted to ask her a question. I calmly walked over and told Lulu she was in a timeout. I had warned her, right? People looked at me like I was crazy.
But seriously? Just answer him. I tell people that all the time. Yes it’s annoying he asks questions while we’re watching TV, or riding in the car, or wherever, but if you don’t answer him he’s just going to KEEP ASKING. Plus it’s rude not to answer someone. Sometimes it’s a thought provoking question, but sometimes it’s just a “Right Daddy?” Which will quickly turn into a “Right Daddy? Right Daddy? Right Daddy?”
What Does Everyone Else Think?
My mom does not like to hang out with G. She denied it all summer, but there are many who back me up on this one. She just doesn’t get him. Or have the patience for him.
At the same time, she is not at all sympathetic to me being completely worn out by him at the end of every day. In fact, I usually feel guilty for not doing enough with the kids.
Sometimes people say they can’t understand what G is saying. He still mispronounces certain sounds, which the school sweats is developmentally appropriate and they refuse to have his speech evaluated. For example, he says the following words wrong: sus-plosions (explosions), duh (the), wibber (river). It’s still kind of cute at 6, but I’m sure that won’t last much longer
The pediatrician brought up Asperger a year ago, at his 5-year-old checkup last summer. G had a meltdown while we were there because he was afraid he might be getting a shot. I didn’t think much of it, but the pediatrician said repeatedly, “This isn’t normal. This isn’t normal.” When the doctor asked about his socialization, I said he was very social, and we both kind of dropped the issue.
I’ve never had anyone else — friend, teacher, acquaintance or otherwise – ever bring up Autism or Asperger Syndrome. That’s not to say that my friends don’t realize he’s a little immature for his age or that he can be a lot to handle at times. Usually I get encouragement from the other moms that their kids are a handful too. And that’s when I waffle. Should I even look into having him evaluated? I wasn’t even sure how that works. My husband didn’t see any reason to pursue an evaluation and thought I was crazy for bringing it up. But I couldn’t get the thought of Asperger’s out of my head. The more I googled it, the more I was convinced. Which is not a statement sane people make, I’m aware.
You’ll have to wait for Part 2 to see if: (A) I have my son evaluated. (B) I decide to self-diagnose him with Asperger Syndrome. (C) I get too distracted with my mountain of unfinished DIY projects that I forget about it all together. (D) I call it ADHD and call it a day.