Autistic Musings

And They Think I Actually Know Something.

Yesterday I got the dreaded phone call from the social worker at Henry’s school.

Although I like most of the professionals that work with my children on a daily basis, I don’t like seeing the number come up on caller ID, mostly because they rarely ever call with good news.

I expected that this would be a call would be a conversation about the boy he had hit the day before, but it wasn’t. Rather, Henry was giggling too much. In fact, he was giggling nonstop for well over an hour, without any reason. In fact, it was distracting the rest of the class. He was removed from the class and was placed in what the school calls the “red zone,” where they attempted to calm him down, with no luck.

This is the reason why I dread these phone calls. Inevitably, I get this question, “What do you do when he has this behavior?” and I’m unable to answer the question or offer any solutions.

(If the worst thing he did all day at school was giggling, well, I guess that isn’t all bad. However, if you were to witness this with him, you’d see why it is a tad disruptive to class).

A few months ago I wrote a post, titled On the Ambiguity of Autism. After I published it, my daughter J and I were talking about it and she told me that I had not quite accurately represented my perception of my sons’ autism.  I apparently downplayed a lot of behaviors. She was probably right.

It’s not that I’m in denial about the fact that three of my four children are on the spectrum.  That was me a long time ago, when I was dragging my children from specialist to specialist to prove that my kids weren’t on the spectrum. That was my then husband, who, upon finding out that our sons had been diagnosed with ASD,  said that he didn’t think anything was “wrong” with our sons.  Fortunately, we both came to terms with the diagnoses and now know that Autism is a reality for our family.

When our daughter J was born, I remarked to one of the specialists how “advanced” she seemed for a toddler.  The doctor said, “What you’re seeing with your daughter is normal development.” I had grown so accustomed to developmental delays and ASD symptoms that  I didn’t know any other way. If J had been our first child, we would have seen the signs almost immediately when our sons were infants.

But she wasn’t our first child; which means that my experience with autism started the minute I became a mother. As a mother, I do  not know what it is like to parent in a home without autism. It’s all I have ever known.

I am not one of “those” autism moms; like many members of the multitude of support groups that I am a member of on facebook. I don’t spend hours driving my children to therapies all over town. We don’t have a PECS schedule.  We don’t have any schedule. I go to the autism resource fairs and collect information that just sits in a pile on my desk. I am actually quite disorganized. We don’t do the gluten free soy free vegan whole food diet. By those standards, I have failed miserably as an autism parent.

There are a lot of reasons why I don’t do these things, or maybe they’re excuses. I don’t know.

I have, however, done other things. I’ve joined the multiple online support groups and in a few days am going to attend a new one with people I already know. We got our children involved in Special Olympics. I attend all the IEPs and I take notes from the teachers.  I buy books on autism tips and use some-not all- of them. I’ve looked into things like a weighted blanket for Huey and when I determined the price was out of my price range bought the materials to make one for him myself. I bought him an iPad and looked up best apps for kids with autism.

So okay, maybe it’s a little harsh for me to think that I’ve failed miserably as a mom, when I know that’s not the case. I do try.

I’m far from figuring it all out yet.  What do I tell the school professionals, who don’t know how to handle my son’s behavior and are looking to me, their mom for guidance?  After all, I am the one who knows them best, right?

Uh huh. I told her I didn’t know; that we hadn’t seen it at home. No wait. A couple nights before I had woke up at around midnight to hear a very giggly 10 year old. When I got up I found him sitting in the hallway, wearing his favorite Scooby Doo shirt that he had apparently gotten up to dig out of the pile of clothes in the dryer, so he could wear it do bed, I guess. I don’t know how long he was giggling after that. He did fall asleep again, eventually. I know, because when I woke him up for school in morning, he was too sleepy to get up, of course.

I told her that I didn’t know what would help. And I apologized for not knowing what to tell her. Then I told her that when Henry sleeps, he sleeps with a heavy pillow across his chest. I think he likes the pressure.  He’s always been like this; ever since he was a baby who had a hard time settling himself to sleep. He loved being swaddled. One day he had been crying non stop for over an hour. So I bundled him up in the carseat so I could take the kids for a drive. The minute I bundled him up and put him in his seat, he went to sleep. For 6 months after that he slept bundled up in his carseat. At his other school, they’d put light weights around his ankles and he would calm down. The weights helped him regulate his body, and helped him slow down. I don’t know why this was stopped.  I’m in the process of making him a weighted blanket and a weighted vest and maybe a weighted pad because pressure helps. Had they tried any sensory tactics?

This is the point where the little light bulb went off in my head.  Maybe I don’t know everything there is to know about autism, but I know enough.  I know enough to parent my children and love them and help them navigate their ways through this world. And maybe I do not do it perfectly, but that’s okay.

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