Tag Archives: sensory processing disorder

Surrender

It would be almost impossible to enumerate the many things we learn from our children, particularly those who have special needs. Infinite patience, for one. Hope. Perspective. Appreciation. Acceptance. Love. And maybe a thing or two about dinosaurs or natural disasters.

But with each of our children, special needs or not, if we really stop to think about it, we might find that one thing stands out above all else. The one thing that we really needed to learn from them, and from them alone. I wrote recently that what I have learned from Neil is the power of belief.  More than anything else, every day of his life, Neil has taught me to believe. But what I have learned from Adam is just as valuable.

In a word – surrender.

We’re not conditioned to view surrender as a good thing. To most of us, it means giving up. But to me, surrender means letting go. It means letting go of that which I cannot control. It means letting go of expectations. It means accepting What Is. And it’s something that Adam, even more than Neil, has taught me every day.

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Unfortunately, I don’t write as much about Adam. This website is called Teen Autism, and Adam was never officially diagnosed on the spectrum. He did, however, experience a significant delay in language development, necessitating speech therapy until almost age ten. But what really affected him – and still does – is his sensory processing disorder. He must have been miserable as an infant, toddler, and even a preschooler. It wasn’t until age five that he seemed to be somewhat at home in his body; he was finally talking and smiling more often than crying and yelling.

But his eating issues continued to get worse. Whereas I would call Neil a picky eater, Adam is a limited eater. A year ago, as he was nearing 13, I started to realize that it seemed to be a control issue with him – not to control me, but to have some control in his life. He couldn’t control that his dad, whom he idolized, lived 700 miles away. He couldn’t control that he had an autistic brother. But he could control the food that he decided to eat. So what started off as a sensory issue developed into something even more involved.

And it bothered me greatly, not just because I worried about his health and his growth. It bothered me that I couldn’t just cook dinner for my child and he would eat it. Even at age 13! It bothered me that he was a teenager and, like his brother, should have been eating me out of house and home (even though Neil is picky, he still manages to eat a variety of foods, and in mass quantities). And it bothered me that Adam would eat more food when he was with his father. I took him to see a counselor, and he fought me, saying, “You’re making me do something against my will!” I compromised, telling him that if he increased his dinner choices to seven things, one to rotate each day of the week, that we would stop going to the counselor. He reached that point within three weekly sessions, and although I followed through, he has since lapsed to five or six items on the rotating dinner menu.

So I surrendered.

I let go of my expectations about Adam’s eating habits. I let go of my expectations about how he responds to having an autistic brother (hint: it’s not always noble or gracious; in fact, usually not). I had to surrender. I had to. And I thought that if he could spend more time year-round with his dad that he might start eating better when he’s with me, too.

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He has been with his dad for over three weeks now. I’ve talked to him several times, and the last time I did he told me, with excitement and pride in his voice, “I’ve been trying lots of new foods, Mom! I’ve been eating a lot.” And I told him, choking back tears, that I was so glad to hear it.

And someday soon I will tell him that there is nothing I wouldn’t have done to help him to be as happy and healthy as possible. I will tell him that it’s okay that he’s not always glad to have an autistic brother, that I honor his feelings. I will tell him that I accept the fact that he eats differently. And I will tell him that I have become a more balanced person because of it, because of learning to surrender.

Adam, age 9, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

When Eating is Difficult

Thanksgiving always poses a problem for those who are orally defensive. And although sensory processing disorder occurs simultaneously with many ASD individuals, it also occurs in those who do not have autism. My non-autistic younger son, Aidan, is highly orally defensive, and has been since infancy. It was so bad that sometimes while breastfeeding, if the milk tasted differently to him, he would scream and act as if I were trying to feed him motor oil. It was not fun for either of us.

The term “picky eater” does not seem to be the most fitting for Aidan, now twelve years old. Nigel, my autistic son, I would describe as a “very picky eater.” Aidan I would describe as a “limited eater.” Whereas Nigel will choose from an array of five acceptable breakfast items, Aidan will eat one (cold cereal and milk, alternating between two types of cereal, and that has only been a very recent development). Nigel will eat any of 12 choices for lunch and dinner, and Aidan is limited to five, and there are limitations even within those five.

He does not eat sandwiches. No macaroni and cheese. In fact, no cheese at all. He’ll eat pizza, but only after he peels off the cheese. No waffles, no oatmeal, no eggs, no CAKE even. For his birthday, he has cinnamon rolls.

I used to fight him on this. I recall when he was four years old that I gave him a tiny piece of lettuce and he refused to eat it, of course. So I sat on the kitchen floor with him and held him and put the piece of lettuce in his mouth and forced him to eat it. And I swore I would never force him to eat anything again.  I tried making bargains with him, I tried letting him go hungry until he would eat what was on the table. I tried reward charts. I tried grounding. Nothing worked.

In fact, the only thing that has worked is respecting his oral defensiveness. Respecting the fact that he has a hard time eating in the first place, and he only weighs 78 pounds, and “letting him go hungry” is the worst possible thing I could do because then his stomach would shrink further, making it even more difficult for him to eat the next time he tries. There are compelling reasons why he won’t or can’t eat many foods, and the best thing I can do is accept it and work with it.

And so, tomorrow, when we go to my mom’s for Thanksgiving as we do every year, we will bring Aidan’s certain brand of turkey hot dogs that he eats. And the raw baby carrots, the only vegetable he will eat. And he’ll sit at the table with the rest of us, and everyone understands (after some years of fruitless cajoling) that he will only eat what he eats. And we’re all a lot happier for it.

First Days and Sensory Processing Disorder

First days of school are nerve-wracking for lots of people, but especially for those with Sensory Processing Disorder. Most ASD people have some type of SPD (or several), but there are also many people with SPD who do not have autism. Aidan is one of them.

In the beginning, of course, I did not know this, but early on I thought he might have something I read about called “low sensory threshold.” He cried when I held him, he cried when I put him down, he cried in the baby swing, he cried in the car, he cried in stores, and he cried at home. He cried about 80% of his waking life. I did not know what to do for this child. The crying was so extreme that it prompted his two-year-old autistic brother to speak one of his first words: “cying.” He was trying to say “crying” but couldn’t get the “r” sound. “Yes, Aidan is crying,” I would tell Nigel.

Aidan was about one and a half when Nigel was diagnosed with autism. At the time, I thought about the fact that Aidan was also not making any attempts to talk and had very sensitive hearing, like Nigel. I wondered if Aidan also had autism. There were many who suggested that Aidan was simply mimicking his older brother, but the signs were there even when Nigel was elsewhere. Nigel’s autism was more on the severe side as a young child, fairly obvious once diagnosed, so if Aidan did have some level of autism, I thought it might have been PDD-NOS. Trying to be objective, I looked at the differences in my sons’ behavior. Aidan made eye contact. He knew how to play with toys. He did not stim. He was just always crabby about something. So PDD-NOS did not seem correct. But what, then?

When Aidan was three years old I was able to enroll him in the same early intervention program that had been so beneficial for Nigel. The therapists evaluated Aidan and informed me that he had problems with sensory integration (SPD hadn’t been coined at the time) and a developmental delay in language. They provided OT and speech therapy, which seemed to help him. But it wasn’t until he was five that Aidan seemed to tolerate his body and his surroundings better. He finally seemed happy.

Aidan continued to receive speech therapy until he was almost ten, and I could tell he was glad when that was behind him. He is now IEP-free (yes, I did the happy dance when I left the last meeting, because now I only have one child with an IEP) and does quite well in spite of the fact that he is the pickiest eater in all of southern Oregon (at least) and hates wearing shoes because “they smash my feet.” He constantly complains about smells that no one else smells, he wears the same clothes for days on end because they’re the only ones he feels comfortable in, can’t stand having his hair brushed, gets carsick, and won’t tie shoelaces or ride a bike. But at least he no longer cries 80% of the day!

And so I was a bit concerned about Aidan’s first day at a new school. School in general can be a pain for SPD kids due to the potential for sensory overload. I drove Aidan this morning so he wouldn’t have to “process” the bus yet, and I think that helped to ease him into the first day. He said the lockers aren’t so bad, and he assured me that he didn’t buy anything at the vending machines. He didn’t get lost, and he got on the right bus to come home. Best of all, he didn’t get carsick!

 

Added 9/13/08: an informative SPD site – click here