When I Told Him

I have put off writing this post, but it is time. Holly at Fearless Females, one of the blogs I read on a daily basis, wrote about this subject, and it encouraged me to write a post about when (and how) I told Nigel about his autism. On that day, Nigel had experienced something that I’ve referred to as a “lucid moment” or a “moment of clarity” (which Holly also recently wrote about). It was a rare moment when he might ask me a question, or I’d ask him a question and he’d answer me, not in the rote tone of autism, but in his own sweet voice, with complete comprehension and perfect enunciation. The words he used were his own, not echolalic, not a phrase he had memorized from a video that would fit within the context of the situation. And during these fleeting moments of clarity, I could see in his eyes that it was really him, not the autism, the usual vacant quality, that was communicating. At least, that’s what it felt like to me.

On the day in question, I had received a call at work (up until I began homeschooling him a year ago, not a day went by that I didn’t fear receiving the dreaded calls that my son’s behavior was too disruptive, and I needed to leave work to come and pick him up). I’m not sure what he did that day. It was a blur of many days, many issues. Once a boy who had somehow antagonized him came up to him, and Nigel grabbed him by the shoulders and swung him around and threw him on the ground. Another time he threw a pinecone in a friendly girl’s face, because someone else had riled him up. He had chased kids with sticks in his hand. He had knocked desks over and screamed in class. He had refused to do class work, complaining, “I’m too hard,” back when he was still learning pronouns.

So I picked him up from school, and his full-time education assistant explained to me what had happened that day. Nigel, age eight, stood with us for a moment, then walked off a little ways until we had finished talking. He hates being talked about, always has, and he’s never been oblivious to it. And he knew that other kids’ parents didn’t talk to any teachers about what kind of day they had, every day. But that day, he was able to verbalize it.

I will never, ever forget the feeling in my body as we walked to the car, side by side, and he looked up at me and said, so lucidly, “What’s wrong with me, Mom?” Those words gripped me, set off a knot in my stomach, chilled me, stunned me (since most of his speech at that point was still echolalic or with incorrect syntax). I knew the day would come, because Nigel had always been social, and he was developing verbal skills. I knew one day he would wonder, and he would ask. I was not prepared for it that day, in the middle of second grade. So soon, so harsh. I stopped for a second and put my arm around him. “We’ll talk about it when we get home, honey,” was what I said.

I berated myself later, wondering, Why, when he asked me what was wrong with him, didn’t I say, ‘There’s nothing wrong with you, honey’ ?  To this day, I wish I had said that instead. But his words had caught me off guard, and I wasn’t prepared.

How do you explain autism to your eight-year-old autistic son? I don’t even remember how I began. I’m sure I tried to keep it as simple as possible. I think I started off by saying, “Some people have a disability in their eyes and they can’t see. And some people have a disability in their legs and can’t walk. A disability is something that makes it hard for people to do things. There is a brain disability called autism. Autism makes it hard to learn to talk, and it makes your ears sensitive so they hurt when you hear air dryers in public bathrooms or leaf blowers outside or the vacuum cleaner.” I wasn’t sure if he comprehended what I said, or if he was even listening. He didn’t appear to be. I continued by telling him that his teachers and family will help him with understanding autism, and there are some good things about his autism too, like learning to read early and knowing how to read maps. I told him it’s okay to have autism. He seemed fidgety at this point, and so I told him he could go watch a video. I hugged him, and after he left, I cried.

But not for long. I’ve always acknowledged my emotions concerning having an autistic child, but I’ve also come to realize that vigilance and advocacy are two things that I need to focus on, and they take up a lot of time and energy. So I let myself cry when I need to, but my mind soon jumps to begin composing an email to the Special Education Consultant (advocacy) about whatever issue caused me to cry, and then a split second later I’m dashing out of the room (vigilance) to find out why Nigel’s yelling or what just crashed.

So that day that I told my young son, with a huge lump in my throat, about autism, I did cry for a minute. Then I got up, went to my computer, and wrote “Nigel’s Autism Book.” I wrote it in the first person, starting with, “My name is Nigel. I like to run, read, laugh and play like other kids. But there is something different about me. I have autism.” The rest of the book talked about how autism affects him. Things like, “Sometimes I don’t know what to say and I say something from a video. I like to watch videos. But other people do not know words from my videos. First I will tell them what video I am talking about when I say something from a video.” I ended with “Other people have autism too – other kids and adults. Someday I can meet them.”

Unfortunately I didn’t finish the book until after he had gone to bed, so we didn’t have the opportunity to read it. The next day was traumatic for him. He was beside himself, physically and verbally acting out with anxiety and mentioning autism to all the teachers (I guess he was listening when I had talked to him). And, of course, I got a call at work that I had to come and pick him up. We came home and I read him the book I had written for him, and we read it with Aidan, who was six at the time. Nigel spent the rest of the day carrying his book around and later stated that he wanted to bring it to school the next day. He had such a relieved look on his face that I reprimanded myself for not preparing the book before telling him that he had autism. Of course! He needed something visual in order to gain some understanding of this bomb I had dropped in his lap. Now he had an explanation. Something he could show to other people because he couldn’t explain it in his own words. He took it to school and showed his teachers and the kids in his class. And some of those kids still care, still look out for him, six years later.

I consider “Nigel’s Autism Book” to be the most important thing I’ve ever written. If I publish nothing as long as I live, I have helped my son with my writing, and that is worth so much. Nigel still keeps the book on his bookshelf, and every now and then I see him reading it, as if to remind himself how far he’s come.

11 thoughts on “When I Told Him

  1. Fearless Females

    I think that’s great!! You wrote a book for your son. I also think you are much too hard on yourself–you wrote a book but you were angry with yourself for not writing it sooner. No… most parents wouldn’t write a book to help their son understand his issues bettter.

    I think you should publish this book–self-publish online…if you must!! I will buy it!

    Any yes it is heartbreaking but only when we see their autism as a negative. Everyday I wonder what my non-verbal autistic daughter must think…she cant ask me questions like Nigel and my son can!?

    Thanks for the links!!!

  2. Lex Savko

    You’ve told me this story before, but it always moves me. There is absolutely nothing wrong in the way you handled the situation. You needed your time to adjust and Nigel needed his time. You should both be proud of yourselves.

  3. Becky

    I stumbled onto your blog a few weeks ago and I really love it. I have a 7 year old and often worry about the future. You give me a lot of hope! I just had the Autism talk with my son the other night so your post has great timing for me. I just wanted to delurk and say hello. I enjoy your writing!

  4. Melinda

    I can totally relate to your angst about the phone ringing and worried about it being the school telling you something else your son did that day that was wrong or inappropriate. I went through years of the same with Noah. It never gets any easier either…

    Noah recently came out and asked me WHEN he got autism. I explained to him it was probably just something he was born with and then explained to him very simply it just meant he processed things differently in his brain than others might….and added things like you mentioned above….about it being more difficult perhaps to figure out what to say to someone or what to do…..or have super sensitive hearing…etc.

    I also immediately followed all that with “but that’s okay” and “this means you are really good at some things that other people will never understand!”

    I try to always make Noah realize how unique and special he is…..I hope he knows it.

    Again I can totally relate to this post in so many ways……

    I had to write a book for Noah……a CALM DOWN book. He still grabs it and uses it himself when necessary.

    Take care!

  5. Jeffrey Deutsch

    Hello Tanya,

    I think you did the right thing, explaining Nigel’s situation to him in age-appropriate detail. You then followed up in great style by writing a sort of meta-social story and giving it to him to show others. Kudos to you!

    We late-diagnosed Aspies tend to find our dxs to be liberating. Sometimes some family members may be disturbed while the Aspies are just fine.

    I know my dx – and my loving NT wife, Emily – have enabled me to start turning my life around.

    Nigel is very fortunate to have his autism diagnosed and treated from the start…under the watchful eye of a loving mother like you.

    Cheers,

    Jeff Deutsch

  6. Pingback: Teen Autism » Blog Archive » The Talk

  7. Pingback: Tanya Savko – Five Questions Autism Awareness Campaign

  8. justme

    This, or a version of it, would be a wonderful children’s book to publish. Are there books like this out there for kids with Autism? Since you are a published writer, have you concerned writing a book for kids similar to this one? I think it would be wonderful!

  9. Tanya Savko Post author

    Thank you for stopping by, and for your comment and suggestion. I’m not sure what the situation is now with children’s books on this topic, but it would definitely be worth looking into. I appreciate the encouragement in that direction!

    Best wishes,

    Tanya

Comments are closed.