The One Where I Learned What I Already Knew.

I have composed this post and recomposed it so many times. I do my best blogging in the shower. I’m brilliant, funny, clever. And then I sit down in front of the computer to write it out, and moths fly out of my ears. Don’t say voice-to-text. My next blog post would consist mostly of “Who took my tweezers? I put them RIGHT HERE! If you don’t like it when Mommy has whiskers, DON’T TAKE MY TWEEZERS!” and “Who flushed the toilet? I lost all the water pressure!”

This post is a bit of a departure from my normal doings. It’s less about humor or endangered species and more about real life. It’s about my smallest one, the child formerly known as Squish. He was horrified by this nickname and demanded that I change it at once. By his decree, he will henceforth be known as The Destroyer.

dp cucumbers help puffy eyes

One of my favorite goofballs

We’ve always known that the little critter marched to the beat of his own drummer. I love that about him. All of my kids are weird in their own wonderful ways. Weird is good. Weird suits me. I wouldn’t want to change one thing about them. This right here is one of my favorite stories. He’s kind of hilarious, and he views the world in his own special way.

I can’t say that the news was unexpected. We’ve seen it coming for a long time now. Since he was eighteen months old, we knew there was something different. Something a little… off. He was evaluated as a toddler for speech delay, but the delay wasn’t significant. Just something to keep an eye on. And I saw when he was in preschool that he tended to play alone. I talked to the teachers. Oh, no, he’s fine. He has LOTS of friends! The list of signs grew longer. Anxiety. Hand-biting. Running in place when he was overwhelmed. Tantrums that didn’t fade as he grew older. Panic attacks. Fears about weird things while daredeviling with stuff that could actually kill him. We suspected. We worked with teachers, worked together, trying to make a plan that would keep his development moving forward. His teachers have been phenomenal, always brainstorming about things that could help. We have been so, so fortunate.

We avoided having more evaluations done. We didn’t want to change our kid. We were so worried that a doctor would put the little guy on meds for ADHD. He is a busy little person, but we can work with busy. We did okay.

I am not even totally sure what caused us to pull the trigger on it and seek out additional evaluations. I think it was when the medication for his anxiety backfired and sent him into unexpected rages every evening. So we got a referral, we made some calls, and we waited. And after a grueling two-and-a-half hour appointment, we learned what we knew. The Destroyer is Autistic.

We knew it. We’ve been constantly developing work-arounds since he was a toddler. I’ve run the zoo’s camp for Autistic kids since we first offered it. I know Autistic kids, and I love them. In some ways, having my own kid’s autism confirmed is like being given a golden unicorn, a priceless gift. He sees the world in such an incredible way. But no one else ever saw him like I see him until we went to the specialist.

In other ways, the diagnosis was overwhelming. We left the office, and we didn’t talk a whole lot. It was Halloween, and we had a party to get to and lunch, and lots of fun things planned. But suddenly this little person was a stranger. After hours of picking him apart behavior by behavior, I had lost the gestalt of him. Suddenly I couldn’t reconcile the child in the backseat with the little boy I had yelled at that morning for throwing his football in the house. He was a stranger.

“He’s the same kid he was yesterday,” my brain told me. “And they said you’d done great with him.” And it was true. The therapist told us that we had been creating interventions all along that aided his development, and that if we hadn’t, he would be a much different kid, he would have more difficulties than he does. But her words didn’t help. We did the right thing. But which thing was that, exactly? Out of the blue, I no longer knew how to parent this child. I felt like I was walking on thin ice; one false step and I would break him. I did not see my son as my son, but instead a collection of neurodivergent behaviors. Yesterday the only thing on our schedule was church choir, and now we’re looking at Speech Therapy and Occupational Therapy and Cognitive Behavioral Therapy, and who knows what else. And I’m tired. We were doing okay before, right? Is all this stuff necessary? And how do I handle the time off work?

I’ve made a million phone calls. Some are answered, most are not. It’s hard to get an appointment with a specialist apparently. I’ve shifted things around, talked to the insurance company to see what’s covered, done all the grown-up things. I’ve ordered books and special Chewelry so he has something to gnaw on. I’ve gone through the steps without feeling them, checking off boxes one by one.

And then out of the blue, I *got* this kid. When our mornings are rocky, I realized, it is usually because I have not been clear in my instructions. He wants to do the right thing (mostly, he is 10 after all). He’s not trying to get on my nerves. It’s just that I haven’t made myself clear. Now I am rethinking the structure of our morning and the things that I say. And it’s easier. Because I *get* him now. I am learning to put myself in his shoes because he does not yet know how to put himself in mine. And the speech therapist will go to his school. When she told me that, I felt like a weight had been lifted. One less thing to schedule around. And we’re doing it.

I still have a lot to learn. I have to weigh the pros and cons of different therapies, and I have to learn all the lingo. There’s so much that I don’t know. But it’s pointless to expect that I’ll learn it all the first week. Or the first month. Or the first year. Baby steps. This month, we’re concentrating on National Novel Writing Month. He’s writing, I’m writing.  I’ll read a little on cognitive behavioral therapy and do a little research on games and things we can do at home. Baby steps. If he’s doing well know, imagine how much better he will do with additional therapy.

I still don’t want to change my kid. Autism isn’t a bad thing. It makes him who he is. He is funny and bright and driven and sweet. He doesn’t need to change. I do. I need to let go of my fears of the future and let the pieces fall into place. Adventure awaits around every corner, and I am so here for it.

He set up this shot. He has the most delicious sense of humor!

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18 thoughts on “The One Where I Learned What I Already Knew.

  1. “I am learning to put myself in his shoes because he does not yet know how to put himself in mine.” That statement demonstrates not only the essence of a great parent, but the essence of a great human being. At my house, we have learned to joke about our grand variety of atypical neuronal viewpoints, and to let go of the notion of what’s “right.”

  2. Amazing. You have no idea how warm and fuzzy it makes me feel to know kids like this, parents like you, and teachers like that are filling the world. I’m looking forward to many more tales of the world as seen through your, and your son’s, wonderful eyes! 🙂

    P.S. – “After hours of picking him apart behavior by behavior, I had lost the gestalt of him.” – with lines like that, I hope you never again doubt yourself as a kickass writer!!

  3. This post reminds me, once again, why you are one of my absolute favoritests of the people who live in my computer. Your compassion, your openness to learning and to living with what comes, your willingness to let others see you as you are, your facility with language that makes such human connections possible. The Destroyer is lucky to have you.

    As we are lucky to have you.
    As you are lucky to have the Destroyer.

    Peace to you and yours, my friend. May the gods support and sustain you on this next leg of your journey…

  4. Oh – well done darling girl! This is great!
    I worked with an autistic child when I was a nanny in England. We developed an amazing connection. For four years. FYI. The one thing that worked for him was gentle count downs. Ten minutes before we put shoes on, five minutes and etc.
    if he knew what was coming up in a gentle clear voice we got out the door on time.
    The other thing he loved was hand signals! He and I created a sign language only he and I knew! It was great! Special and secret and he seemed to
    Understand better when I whistled and then signed “ bring the volume down – you are scaring the horses!” Now he is a stunning grown up lad at a posh boarding school in England. And doing marvelously in that ordered environment. Though I miss him when he was little.
    I am so happy for you – you are wonderful!

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