Jeremiah saw his pajamas laying on our bed, grabbed them and brought them to me. Someone who doesn’t know him or doesn’t spend time learning about him might say, “Oh, he wants to go to bed.” Another person might not have a clue what Jeremiah is doing, so they take his pjs and put them on the couch or away in a drawer.
Most parents know their kids and can read their cues, they know when they’re tired, hungry, want (or need) to go outside, but when your child is nonverbal the cues can be misconstrued. In giving me his pjs, Jeremiah was communicating he wanted them on. He likes the comfort they give him, warm and soft, but it was also getting close to bedtime and routine is very important to him. Was he ready for bed? Probably not, but he knew what came next in his routine.
Living in a nonverbal world, unable to communicate those desires, needs, feelings, and opinions can be extremely frustrating. As a child’s parent, care giver, teacher, or therapist we need to do our best to understand what that child is communicating.
Here are some situations that have come up with Jeremiah that some may not understand, and some have even taken us a while to clue into:
- When Justin runs the water to give the kids a shower, Jeremiah walks into the bathroom and backs up to Justin, who is sitting on the edge of the tub. Jeremiah wants Dad to take his clothes off so he can get in the shower. Someone who isn’t aware of Jeremiah’s routines may have no idea what he wants.
- You might have an Autistic child who’s intensely frightened of showers. Oh, that used to be Jeremiah, he went through a long phase of despising them. Whenever we turned the water on in the bathtub, he would cry and get so upset. It honestly took us a little while to connect the two, no point in mentioning exactly how long, it’s kind of embarrassing and why I’m writing this post. If a parent (clearing throat, us) wasn’t paying attention, they may not know why he was crying.
- Jeremiah recently discovered he loves oranges. Yeah, kind of strange for a kid who has Sensory Processing Disorder and is extremely picky about the texture and taste of food. We give him as many oranges as he wants, but one day we got busy, as every family does, and when we went in the kitchen, we found this: In his own nonverbal way he was saying quite clearly, “I would like some oranges people.” Yeah, we got it. A little late. Someone else might think he was only lining up the orange balls, because why in the world would a child who has Autism eat an orange???
Not all nonverbal communication is this clear, but we’re really lucky when it is. Here’s an example of one that wasn’t quite so concise:
- One cool spring day, Jeremiah brought me his PECS picture to indicate he wanted to go outside, but he wasn’t able to. It was cold after some warm spring days, I had things to do inside and couldn’t go out with him. He was frustrated. He brought me the PECS picture again, and I said, “Not now, it’s too cold.” I put the picture on the counter, not on it’s usual velcro spot on the door to indicate, no really, I mean it, we’re not going outside. He then brought me his snack PECS picture. Okay, I was working, and would get it in like twenty seconds, but anyone who has a nonverbal Autistic child knows that twenty seconds is an eternity to that kiddo. I placed the snack PECS picture beside me on the desk and kindly asked him to wait. He put it in front of my face again and I said, “Wait.” He gave up and left, I soon followed and walked by the back door, the door to the backyard. There by the door lay both his PECS pictures for his snack and “outside”. I got his snack out, handed it to him, and he stood by the door. Mama got it. I also abandoned my project of the moment and allowed him to go outside. His smile was priceless. That smile when the ones he relies on most in his world “get it”. That feeling that he’s understood, heard, and cared for because he got what he really wanted.
It’s so important to be aware of your child as much as possible. There will be times when you aren’t attentive to their movements and expressions, but when you can, it will teach you so much about your child.
Give your child opportunities to engage in activities or eat foods you wouldn’t expect them too. Last fall, Jeremiah watched as his sister ate her almonds. Up to that point his diet consisted of gold-fish crackers, occasional fresh raspberries, and had just added gluten-free pancakes packed with supplements. I saw how interested he was so I placed a couple almonds in front of him, and HE ATE THEM, and more! Oh jeez, can you say breakthrough? Can you say excited?? People really have no idea how exciting our Autism lives can be. Thrilling when your child eats a new food, looks at a new toy, or gives someone a hug, or simply looks someone in the eyes. If I hadn’t been paying attention, I would have missed a huge opportunity.
Because Jeremiah was attentive to new foods, Justin saw him staring at some cheese on his plate, so he give him a Jeremiah-sized handful. Well, Jeremiah’s allergic to cheese, and we knew this. It causes so many issues with him, including, but not limited to, him losing skills when he eats it. Oh, I wasn’t happy, not one of those proud Mommy moments. In the days that followed we (and Jeremiah) paid dearly for that small handful of cheese.
I couldn’t keep quiet about it, so I mentioned it to Justin again, asking why he gave it to him. He gave an answer I really had to contemplate and is really a basis for part of this post. Justin said, “He was so interested in the cheese and I want him to be interested in other foods, so I gave it to him.” Then it made sense to me. I asked that he agree to NOT give Jeremiah cheese again, but that we would pay extra attention to foods he showed any interest in.
Another is boiled eggs. Yeah, really plain and weird texture. At first he just played with them. Our response was to keep them away from him because he would pop half of it in his mouth, pop it back out and place it back on our plate. One day Justin jumped at it, sliced that sucker up and Jeremiah ate it! Woo hoo!! He’s been eating them since.
It’s good to step a little out of “normal” sometimes.
Life can become so routine, we don’t try new things, they eat the same food, we aren’t able to go many places. I encourage you (this is even a post for myself) to try. Go. Do. Stretch yourself and your child a little. Don’t make them completely uncomfortable, but you can try taking them to the park, giving them a new food (with warning), or play with a new toy alongside them. You never know, maybe, just maybe.
If someone had told me a few months ago that Jeremiah would be eating eggs, oranges, and almonds today, I would’ve said they were crazy. They wouldn’t have been. But, if we hadn’t paid attention, and if we don’t continue to, we would lose those moments we could build on.
Are there things your child does that you don’t think someone else would understand? If your child is nonverbal how do they communicate with you? Do they use gestures or take you to what they need?
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It can be so easy to slip into a routine of not even attempting new foods because you know your child so well…what they will and won’t tolerate…that you just stick to what you know they will eat. My son has an EXTREMELY limited diet, we end up supplementing with both liquid vitamins and iron to compensate. Between texture and color sensitivities with food, it’s easy to just throw up my hands and stick to what we know. But then he occasionally surprises me…like when we recently discovered he LOVES cheese pizza. So not normal for him. Texture, color, MESS…but he loves it. How many other opportunities to broaden his food horizons am I missing out on when I just stick to what I already know he will eat? 🙂 our special kiddos sure make life interesting, don’t they?
I completely relate! It’s so hard to try new things when you know it won’t work 99.9% of the time.