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About the Author
Coauthor of the award-winning book Asperger’s and Girls, Jennifer McIlwee Myers is a terrific writer and speaker with Asperger’s Syndrome—she is funny, eloquent, and to the point. Her brother had autism, but she wasn't diagnosed with Asperger’s until 2002. She has taught herself to overcome her sensory challenges and has found many unique, innovative ways to navigate the world of “normal” people. Jennifer earned a Bachelor’s degree in Computer Science and currently lives in California with her husband Gary.
Read an Excerpt
Excerpt from Growing Up Sensory by Jennifer McIlwee Myers
I Know This Much Is True
While I have done my best to lay out enough general information to get you up to speed on how SPD works, I haven’t covered everything. It would take dozens of volumes to cover all of the individual ways that people with SPD – whether children or adults – experience life differently.
What I hope I’ve communicated is that when you’ve got a kid with SPD (or ADD, or LD, or autism, or Asperger’s), what you see is not necessarily what you get. When you see your child acting with what looks an awful lot like willful disobedience, stubbornness, and simple spite, you may be missing what is actually going on.
Sure, all kids do things you don’t want them to do some of the time. There are no perfect people who are born always wanting to do what they are supposed to do who never ever fail to follow instructions and perform tasks as they should. Sometimes kids refuse to do stuff they can do. But that’s not always the case. In the case of kids with SPD, that’s often not the case at all.
It is normal and human to assume that outward behavior is a sign of the inner person. We think that when a child is asked to do something difficult or unpleasant and says, “It’s too hard,” he might well just be trying to get out of it. When a child says, “I can’t do it,” when it appears he actually physically can, then we assume he is avoiding something because he is lazy.
There are darn few lazy kids and a lot of kids who are not able to do what we think they “should” be able to do. When you’ve got a kid with SPD and/or any of its accompanying disabilities, you can only learn what that child’s needs are by listening to and believing them.
I can’t stress this enough. When a child with SPD says, “I can’t,” assume he’s telling the truth. You and you alone have the power to change your own feelings from angry and frustrated to sympathetic and helpful. When a child can’t cope with a situation, it’s the adults in there with him who have the power to make something happen differently.
When I was a child, every time I went to the dentist it hurt like crazy to have my teeth cleaned and then examined with those nasty little sharp instruments that they use to poke your teeth really hard. And every time, I would tell the dentist that it hurt, and every time he would say, “You can’t possibly feel that. It’s just the noise that bothers you. If you just relax and stop worrying, it won’t bother you at all.”
Mind you, this was a dentist who was very competent, intelligent, and well-trained. But he would tell me I wasn’t feeling pain that I was, in fact, actually feeling.
What I learned was that when I was in real pain, there was no sympathy unless my pain fit pre-ordained parameters. I learned that no matter how many times I pled with my dentist to be gentler, he didn’t change what he was doing. I learned that my real sensations and experiences just plain didn’t matter.
It was really hard for me to brush my teeth and/or floss. It was super-uncomfortable and often even painful. It was nasty and unpleasant and there were no positive sensations involved.
Since I couldn’t get any control over the amount of pain my dentist inflicted on me, I did what I could to control the thing I had a bit of a say in: I resisted regular brushing and flossing with all my might. I got cavities, but cavities involved getting lots of painkiller shot into my gums so that I didn’t really mind getting a filling nearly as much as I minded the torture that was brushing my teeth.
Oh, the same dentist that insisted that I couldn’t possibly feel the pain I really felt also lectured me endlessly about how I had to start brushing and flossing more often. So while I was being ignored and my very real pain brushed off (no pun intended), I was also getting a really negative experience in that I was told I was being bad and doing wrong every single day.
So there was nothing good about dental hygiene or dental care to me. There was no one to say, “Oh, I know brushing your teeth is hard, but if you do it as often as you can possibly stand to, you will have healthier teeth that you will get to keep all of your life.”
In fact, no one ever, ever, ever suggested that if I missed a day or two, that was not a horrible disaster, and that I should just keep doing my best to brush my teeth as often as I could stand to.
I didn’t start brushing my teeth daily until the horrific morning breath that adolescence brought made it even more unbearable to not brush. By that time, I could brush in the shower, and the hot water helped me stay calm and distracted me with a pleasant sensation to muffle the nastiness of brushing. Even then, I would not floss because that was just too much pain to handle.
It might have been a bit different if dentist had listened to me and understood that I was in pain, things could have been so different. I know this, because as I got older dentists started admitting that sensitive teeth do exist and that when a person says, “Ow, that hurts!” the thing to do is listen to them.
At this point, I make my own dentist appointments and am quite well behaved during them. I know that it is safe for me to be tolerant of minor pain during cleaning, because if I need a break or to stop altogether, the hygienist or dentist will actually stop. I can actually take a little bit of pain now that I’m in control of the situation.
It is way easier to do something difficult if the people around you are supportive and you know that they will listen to you.
So as a kid, I could have said, point-blank, “It’s too hard to floss my teeth,” and no one would have believed me. That meant no credit at all for doing something painful and difficult. Avoiding the pain was the most logical and functional choice I was capable of making at that time.
Can you listen? Can you give your child that credit? If he says, “That hurts” will you say, “Okay, let’s try something else,” or will you say, “Don’t be silly, that can’t hurt!” Will he get gaslighted every single day by every adult he interacts with, or will someone listen and observe enough to realize that he is trying to actually communicate.
Listening, observing, and learning will take you a lot farther than scolding will. Not only that, you can avoid doing a lot of damage when you take the least-damaging course of action.
Here’s an example with a child with a different disability: a friend of mine has a daughter who has been Type I diabetic since she was two years old. Let that sink a minute.
Little Mary has never known a day when she did not have to pay attention to her blood sugar and food intake, nor a day when she could chose food on a whim. She has always been this way, diabetes is part of her life, and she understands that she needs to be compliant to stay healthy.
One day during gym class, Mary went to the teacher and told him she needed a snack, because her blood sugar was low. She explained that she was diabetic.
The gym teacher thought she was lying, so he refused to let her leave class to get a snack. She wanted him to ask the school nurse, but he didn’t.
Gym teacher got his you-know-what handed to him by a very angry mother the next day. It was epic.
But the main thing about this story that matters is not that one teacher was being thick. It’s the fact that he picked the most dangerous and hostile course of action over the simplest and most repair-able.
If he’d let her get a snack and she was (as she is) diabetic and needed it, then he’d be doing the minimum necessary to treat her decently.
On the other hand, if he’d let her get a snack and then checked and found out she was not diabetic, she would be in trouble. She might lose a few recesses or have to stay after school as punishment for lying.
Either way, the consequences of letting her get a snack would not be dire or cause serious problems. The consequences of not letting her get a snack could be serious, as it is important for diabetics to monitor and control their blood sugar as in serious medical complications can result from not doing so.
The situation with a child with SPD is very similar. If the child avoids a task because it is painful or because he doesn’t understand how to do it, the best thing to do is listen to him. It’s the least damaging, most helpful possible way to find out what is actually going on.
Mind you, if he says, “I can’t possibly do this without a chocolate bar and a dozen bearers to carry me on an elaborate sedan chair,” then maybe he’s fibbing. But you’d know that, wouldn’t you?
Serious complications, very serious complications, result from not listening to the child. If child learns, over and over again, that he lives in a world where no one trusts him and all of his pleas for help and support are ignored, it can leave him in an emotional place you wouldn’t wish on your worst enemy.
Some kids do become liars just because no one believes them anyway. Others become confused and hurt, withdrawing from humans as much as they can. Others are so frustrated that they “blow up” with rage simply because they can’t cope with the combination of physical and mental confusion and emotional pain.
It hurts. Let me be more specific about that: it hurt me. It hurt that when I tried desperately to tell my parents and teachers about why I was stymied, they assumed I was lying. It hurt that after I’d been told to ask a trusted adult for help with almost any problem, none of those adults trusted me all that much. It hurt when I would have severe anxiety attacks that stopped me cold and the people around me labeled that as “lazy.”
I became lazy, in a way. I avoided any task that seemed difficult because there was no support, no help, when I just “tried my best.” Instead, I got told that my very best, my very hardest work, meant that I was “just goofing off” or “not taking her work seriously.”
I did not know how to do things, and I was terrified to attempt to do anything without clear directions. Heck, even when I had directions, I didn’t always understand them correctly, and when I made mistakes, it was “Jennifer does not try,” and “Jennifer does not work up to expectations.” Trust me, the “underachiever” label hurts, especially when you are all but sweating blood to make it through the school day.
I’m not telling you this to get sympathy for me. I have a very good life at this point, and I look back at the people who did and said those things and I know for sure that they simply had no idea of what was going on. All of those teachers would have gladly helped me if they had understood what was needed. None of them would have deliberately obstructed me.
(Okay, I did have one teacher in grade school who was inflexible enough that she wouldn’t have been able to adjust, but she was just a limited person. If I couldn’t forgive that, I’d have a tiny, dried-up soul by now.)
And my parents, while they often didn’t get it, often did stuff that helped me. They brought tons of interesting books into the house; they watched and encouraged me to watch interesting and exciting television; they encouraged outdoor play and built the biggest, coolest sandbox a kid ever had. More importantly, in those situations in which they did understand the kind of problems that I was having, they worked to help me and to help me learn to help myself.
But it did hurt when I tried to tell people about the real problems I was having and they would not listen. I don’t need anyone to feel sorry for who I was then, but I do hope that adults might feel sympathy for the children going through the same problems now.
So, for those kids, let me give you just one more example from me. I’m fine now, but there is a kid somewhere going through the same set of emotions.
When I was a kid, Mr. Snuffleupagus was my very favorite Sesame Street character, which is saying a lot. I loooooved Mr. Snufflupagus and enjoyed every minute I watched him.
But I never watched him all the way to the end. During each segment that he was in, I would be poised, tense, ready to run. Because back then, at the end of each sequence, the “gag” was that Mr. Snuffleupagus would walk away just before some of the adults came over, and none of the adults would believe Big Bird when he said that Mr. Snuffleupagus had been there. They all thought Mr. S was imaginary, and they let Big Bird know that’s what they thought.
Over time, Mr. Snuffleupagus was responsible for stuff that the adults weren’t happy about, and they always blamed Big Bird, and they always thought he was fibbing when he said it wasn’t him.
I refused to watch a Mr. Snuffleupagus segment to the end. As soon as it looked like he might walk away, I darted out of the room as fast as I could, and stayed out until I was absolutely sure that it was over. I preferred missing ten minutes of Sesame Street to the possibility that I might see the adults as they refused to believe Big Bird.
I graduated high chool in 1984, so I was pretty much an adult, in fact 19 years old, in November of 1985. In November of 1985, I read in the TV Guide that the folks who make Sesame Street had decided it was about time that the adults found out that Mr. Snuffleupagus was real and Big Bird had not been lying. The reason given was that they were worried children who were victims of abuse might think they wouldn’t be believed if they went to adults for help.
I was completely emotionally overcome when I read this. Even after all of those intervening years. There was joy and anger and relief all bundled up together just about bursting out of my heart and brain. I was genuinely ferklempt.
And that’s how much it can hurt these kids when no one listens to them. That’s how much kids with SPD need to be believed, need to be listened to, need to know that there are people they can go to when they have real problems, real pains, real fears.
Our kids deserve to be listened to.