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.
June 29, 2012 at 7:34 am
Brody also loves deep pressure…he used to pick up the clamps in Home Depot and pinch his fingers with it…we bought him his own..(he’s outgrown it now)…he also has a weighted blanket…I ordered it from the internet..he only uses it periodically but the one at school is used alot….he likes me to push down on his head and shoulders and squeeze him very hard….we pretty much live our lives revolving around Brody and his needs (he is non verbal so the challenges are big) he doesn’t really “ask” for much so keeping him happy and calm is the least we can do for him…because of him and the people we have met because of his needs we are better people and we owe him big time…
June 29, 2012 at 7:49 am
Thank you
June 29, 2012 at 9:10 am
Gail, it’s so reassuring to read how you cope and help your son. I’ve mentioned prior that all 3 of my daughters (ages 12, 8 and 2) have some form of OCD/Anxiety disorder, which also run rampant within my own family. While they don’t have all of the extreme issues you have had to deal with, they have many of which I now am glad I followed my instincts with them for things like long term breastfeeding, co sleeping, and more.
June 29, 2012 at 9:36 am
Another wonderful, wonder filled page. Thank you.
It goes without saying that you are lucky to have Malcolm, but never forget how lucky he is to have you too.
June 29, 2012 at 10:28 am
Thank you for telling your (and Malcolms) story Gail.
June 29, 2012 at 10:44 am
Thank you Gail. Very insightful.
June 29, 2012 at 11:39 am
Gail, have you heard of SOFT Clothing for Kids? They make the most awesome clothing for kids with sensory issues.
June 29, 2012 at 11:48 am
Your should read about Temple Grandin’s machine, also pressure all around her body. It is beautiful how she put her special talents to work.
June 29, 2012 at 4:53 pm
I am a mother of a 13 year old boy with autism (Daulton). He is a wonderful loving child that just doesn’t fit in to what people would consider to be nominal. He is quiet and caring, he does not act out, he more so acts inwardly. He does not understand the normal social cues so does not have to normal friendship of other kids his age.
My question for you is have you started planning your son future.
I have 2 other children a boy 16 and a girl 11, and looking at their future is so easy in comparison to Daulton. I am not a fool to think that live as an adult will be easy for him, I really have no clue what life hold for him, and the unknown is scary
June 29, 2012 at 6:31 pm
Each week your story helps me understand a little more about autism – thank you for that.
June 29, 2012 at 10:22 pm
A wonderfully written entry Gail! It’s funny the parallels! My children do not have autism but I have dealt/am dealing with similar issues.
Such a heartfelt blog and you are a loving mom!
June 30, 2012 at 7:20 am
After another exhausting night of our son not sleeping I had the brainwave of giving him our queen sized winter quilt. In his little bed he was able to wrap up securely in the volumes of it and the weight was enough to soothe him. I just let him sweat as a problem he would have to figure out how to solve on his own. He did, in the mornings we’d find him on top of the pillow with no blanket.
When we were kids my sister and I would roll ourselves up like hot dogs in our quilts after swimming lessons because we were so cold. It occured to me that our son might like that tightness and security as well. During a meltdown and just went into his room and rolled him up despite his protests. As soon as he was a hotdog his smile went from ear to ear. Stopping the game was another meltdown.
June 30, 2012 at 8:02 am
Thank you for sharing. Autism seems to be quite common now. I empathize with those of you going through this.
June 30, 2012 at 12:03 pm
Its interesting that many of the autistic behaviors are seen in “normal” children, just at a lower intensity. I wonder if the “swaddling” of babies that was done in the good old days actually was a way of helping them calm down and go to sleep?!
June 30, 2012 at 12:53 pm
Thank you for continuing to shed light on this. I have a couple of friends with autistic sons, and this helps me better understand what they go through.
As for noise, perhaps Malcolm can tuck a set of ear plugs in his pocket to pull out if things get too loud for him.
June 30, 2012 at 12:55 pm
Just occurred to me that maybe Malcolm might not like the sensation of using ear plugs. I don’t like myself, and only resort to them when I absolutely have to. That said, it’s worth a try if he hasn’t already tried this.
July 2, 2012 at 8:50 am
As the mother of a soon to be 21 year old boy who was not formally diagnosed until he was 17, I dealt with many of these issues on my own like the clothing and getting others to realize my son had sensory issues. I am here to tell you that they do grow up, adjust and can live on their own. They make fine adults, you just need to keep telling them that you are there for them. The support – physically weighted or just emotional is what they really need.
Keep up the blog Gail, we need all the support you can offer.
July 2, 2012 at 8:54 am
@Teresa,
The main thing we’ve done for our asd child is to buy an investment property, which I have always considered to be hers, for her to live in when she is older. This way, if she can not cope with working full-time, there is less pressure to do so (she won’t have to find rent money each week). Also, she will be able to choose to share with a fellow aspie instead of having to live with an NT, if she wishes.
This is not fair to our other child, but, well, too bad. She has far more struggles in life than I expect her sibling to have, so she needs extra help. Having said that, her sibling will always have first option of whether to live there with her.
I know several people with children with greater needs than mine, and this question of the future is a vexed (?) one for every one of us.