A Mind of My Own
Posted by Gail | Filed under Autism
Chapter 6: The Right Stimulation (Part 2)
When Malcolm was disquieted, I’d wrap my arms around him, as I had done with Daniel, and squeeze tight. I could actually feel the tension go out of Malcolm. The deep pressure was calming. It was also the only way to deal with a meltdown.
I never did find out why, but one day Malcolm blew a gasket with his Dad. It seems that Ken was determined that Malcolm should do what he wanted, and Malcolm had gone over the edge in frustration. (Have I mentioned that Malcolm is unbendable when he sets his mind on something? He is, and it’s a deadly characteristic for a kid to have.) I took one look at him and knew we were in trouble. He was turning all shades of red, face contorted into a mask of fury, his little body rigid as he lay on the kitchen floor. I lay down on top of him. (I’m a big girl, so I supported myself on my elbows and knees.) The pressure worked. As I spoke quietly into his ear, the weight of my body brought him back to me. It took almost half an hour, but he came back.
It was this same need for deep pressure that kept Malcolm sleeping in my bed ‘til he was nine years old. I just couldn’t get him to move to his own bed. He would stay up all night. He would cry. I couldn’t stand seeing him so distraught – he would bang on the wall and yell, “I’m alone,” at the top of his lungs – so I always gave in. It wasn’t until I was having a conversation with the CYW in Malcolm’s school that we came upon a solution.
Natalie and I were talking about Malcolm not moving to his own bed. I was expressing concern because while I loved having my children sleep with me, I thought it was high time he moved to his own room. We talked about his independence and whether this was, in fact, the barrier. In no other way was Malcolm “holding on to me.” He was happy to play by himself. He was happy to play with friends (what few he had), but he wouldn’t sleep alone. We talked about the recent research that showed how deep pressure works to calm down the nervous system for some autistic kids. Things like weighted jackets were becoming popular to help children relax. We talked about creating a “heavy” blanket for Malcolm to see if that would help.
I went home and started to plan. I thought of filling a blanket with sand. My husband scoffed. He imagined the carpet full of sand. How about if I filled it with dried peas and beans? That might work. My husband scoffed again. So now I was mad. I was sure Natalie and I were on to something.
When I get angry I clean. (Compulsively, you ask? Maybe.) As I was folding and putting away the queen-size inflatable mattress we had used for recent visitors, it occurred to me that this was exactly what I was looking for in terms of weight. So that night I moved Malcolm’s mattress into a corner of my bedroom, and spread the very heavy deflated air-mattress on top of Malcolm’s duvet.
In he crawled that night. And there he stayed. All night. It worked. My husband ate crow and Malcolm remained sleeping in the corner of my room under his weighted blanket for about three months. Then he moved to his own room along with the weighted blanket. About a month later he no longer needed the weight. He had adjusted to sleeping on his own.
Big noises are a problem for Malcolm. When he was little, he once begged me not to sing him Happy Birthday because it bothered his ears. I considered being offended and opted for a whispered version, which he loved. He just couldn’t stand the big noise of a birthday song belted out with all the joy and volume normally associated. It was just too much.
Lunchroom noise is a problem for him as are any sudden noises like a siren or a fire alarm at school. Most of our trips to the cinema have resulted in Malcolm climbing onto my lap and putting his hands over his ears. The cacophony of a disorganized classroom can completely wear him out. Even when the classroom environment is organized, Malcolm has a low tolerance for children shouting, books banging, chairs scraping and all the other sounds most of us just block out. He doesn’t seem to have the ability to block the stimulation out and so everything is registered and must be sorted. It’s exhausting.
Having a big, loud, and very physical mom has probably helped Malcolm adjust to sensory stimulation. Had I been a quiet, gentle and soft mom, some of his later experiences may have been more traumatizing. But I regularly attacked him, made a lot of noise (I’m just a noisy person) and was very physical, holding him down and tickling him, giving him big kisses and hugs, and generally making a nuisance of myself. So he’s grown more accustomed to a lot of stimulation. It’s what he’s used to from me. Take me out of the equation, and he’s back at square one in terms of a strong negative reaction to the banging and booming of life.
Sadly, since he tends to “hide” from the stimulation, hardly anyone understands just how horrible it is for him. Instead of crying, screaming at the top of his voice, or acting out, Malcolm sits quietly, going deeper and deeper into himself. All the messages around him are shut out, the good along with the bad. But because he’s no “trouble,” his brand of “difficult” is pretty easy to ignore. The only sign might be in his chewing (on his shirt or hands) and thumb-sucking.
Noise isn’t the only sensation that can cause Malcolm to overload. The feel of things can be almost painful, which is why when he finds something he likes to wear he wears it out. At the end of the winter, it’s difficult to get him back into summer pajamas; he loves the comfort and familiarity of his long-sleeved, long-legged winter PJs. I have to hide the stuff I don’t want him to wear, and take loads of abuse because I’ve taken away his favourite PJs. But it is that or watch him swelter all summer.
There are materials he won’t wear. Socks with seams can be a problem. And I believe texture is the reason why he doesn’t wear underwear. We can’t find anything he’s comfortable in. Perhaps it’s the elastic in the waistband or around the legs. I’m not sure since we gave it up a long time ago, long before he could explain what was wrong to me. So, like Joey on Friends, Malcolm goes commando!
Bright lights can also be overwhelming, as can strong smells. And Malcolm doesn’t do well in crowds. He ends up sticking his thumb in his mouth and shutting down to the point where I pretty well have to drag him along. It’s all just too much. So, as much as possible, we try to avoid these situations.
That’s probably why Malcolm loves home so much. We moved from the city to the country when Malcolm was about seven and he just loves everything about it: the space, the quiet, the freedom to run. Now it’s like pulling teeth getting him to leave the lot, which is one of the reasons why getting him to go to school is such a test.