Jewel was almost 4 when I first heard “autistic” in reference to her. She was months into a part-time preschool program overseen by the local school district, her first significant time around other children, and I was told her interactions were noticeably different.
In denial, I went into observation mode. I saw Jewel take her place on the classroom rug, and the preschooler next to her pop up and go to her mom, saying, “I don’t want to sit next to her; I’m going to wait for the other girls.” I was crushed, but Jewel wasn’t; she kind of squished around a bit on the rug and shot me a look as if to say, “Great, more room for me.” I look back on this now as the defining moment when I realized different, or non-neurotypical, doesn’t have to be a negative.
It’s been more than seven years since then. As much as I have learned, there is still so much to teach her before she declares her independence. And I still make mistakes, lots of them.
Here’s a big one I made recently. My plan was simple: surprise Jewel with tickets to an awards show concert featuring a few of her favorite performers. I had tried to track down tickets to the sold-out show for weeks and reached a deal off Craigslist the day before to buy two up close to the stage at face value. Sure, we had to drive 25 miles one way in Friday afternoon L.A. traffic, but it would be worth it to see the look on Jewel’s face when she realized we were going to the show, right?
Trying to keep the surprise, I told Jewel when I picked her up from school we were going for a long drive, but she insisted to learn of the plan. When I excitedly told her about the prime seats at what I thought was the show of her dreams, she immediately shot down the idea. “I don’t want to go,” she said emphatically.
What a rookie mistake by me. I thought I knew my 11-year-old daughter inside and out, and could anticipate her every reaction. I thought she would sing my praises and call me the “best. mom. ever.” Nope, I was “the worst!”
My first misstep was putting too much pressure on a quick decision, because we needed to go right then, after a long week at school, and pay for the tickets. But I made others, including going for the element of surprise instead of front-loading and giving Jewel time to plan out the event in her head. Also, I had taken away all control over the situation, and she had no say in the who, what, when and how.
But as I delved deeper with Jewel about why she didn’t want to go to the show, it became apparent it was the fear factor. She didn’t know whether she could deal with the noise of the performances, the disappointment of her favorites not winning, even the requirement she would have to “keep a secret” from her friends for a day about the winners until the concert aired on TV.
As I listened to her reasoning, I was impressed. My key mistake was putting myself in her place, thinking of how joyful I would have been at age 11 to get such a surprise, instead of taking into consideration my daughter is non-neurotypical.
I am a firm believer in what Dr. Temple Grandin says about stretching autistic children outside their comfort zones to help them become independent. I think of it as a stretch band when it comes to new experiences: Jewel goes out a little further each time, and I pull her back for some front-loading and to come down from the sensory overload, and then she stretches again more and further. It takes patience (not one of my virtues) and persistence, and sometimes I’m grabbing the stretch band and pulling it back like crazy because it didn’t work, and sometimes the stretch band has extra slack I didn’t see and Jewel is mad at me for not letting her go all the way out.
So with the concert awards show, I grabbed the stretch band and pulled it back, and we didn’t go. I ruefully laughed at myself for thinking I knew it all when there’s still much to learn, and I reveled in the progress Jewel has made. She knows herself and her limits so much better now. She was able to thoughtfully and plainly tell me why she didn’t want to go, instead of enduring the show (or worse, getting very upset in the middle of it as it was being filmed for TV).
Instead of the show, we went to Jewel’s aunt’s house to go swimming. And afterward she called her aunt the “best. mom. ever.” Just in case I was still convinced I deserved the title.