Estée KlarThe Joy of Autism

A continuance of my last post “My Very Important Job,” I want to talk about how Adam becomes very relaxed by the ocean. The sound of the waves, of course and that beautiful sunshine — everyone was out on the beach yesterday on Easter Sunday, digging in the sand and laying around like beached whales. Adam I spend our days together and I take him to restaurants and new places to explore. I take Adam many places in order for him to become accustomed to them. He also enjoys new places especially when he’s relaxed. It is my goal as Adam is able to travel — although we have had difficult moments in our eight years. Yet I’d have to say that the difficult ones are rather rare, which might be why I tend to spotlight them when they occur. It’s funny, really, because as I talk to other parents, it seems to me that other “typical” children have had heart-wrenching tantrums. When Adam is distressed, what is heart-wrenching for me is not the “behaviour” but rather the fact that he can’t tell me with words what he needs. As his mother, I’ve had to learn to never take Adam’s movements, gestures, even types of cries for granted. They are all important pieces of information to me.

The kind of transitions that have been happening such as moving into a new home during a divorced situation is not fun for any child. Adam had his moments of extreme anxiety. In fact, it went on from the late fall until late February. A long stretch like that made me wonder if I’d ever see him smile again. Even though I knew it deep down in my heart, I did experience those moments of absolute panic.

Being in the south with Adam reminds me how anchored he is to me; how much he needs and wants me, not to mention how much he wants to see his mother smile. Watching how much he reciprocates, plays with me, wants to go everywhere with me, and talks (yes talks — he is very verbal down here this trip), is testament to the need for quality time spent with mom doing easy things. It’s also proof to me that I have to work on my own happiness and spend time doing the things I need to do to nurture it because I am not just doing it for myself. It has taken me two years to begin to realize this.

During that transition from fall to late February, there were days when he was so stressed that Adam didn’t even seem like Adam anymore. If I were a parent who would use this kind of lingo (which of course many of you know I am not), it may have seemed like “he wasn’t even in the room,” (which we know that of course autistic people are aware despite what others think of their behaviour, but this seemed like the appearance of a what Kristina Chew has coined the “neurological storm,” and I like that expression very much in terms of describing what these moments are like). For others who distill autism into that robot-type of cold person, Adam may have appeared “distant” — that we were “losing” him. He had lost all of his words, even. For Adam in particular, who is very affable and connected to people he knows well, this was a stark contrast. Yet, maybe mom was similar. Maybe it seemed like mom wasn’t really in the room anymore as I was trying to find the ground beneath my feet again after separation. I wonder how I may have appeared to my son.

Here, happy, relaxed and spending all of our time together, Adam has spoken the following:

Scenario 1: Browsing through a Payless Shoe Store looking straight at us: “Are you done yet?” Now for a parent with a more verbal child, this might seem like a nagging comment. For a parent with a child with few phrases, we were so happy, laughing hysterically!

Scenario 2: Getting ready to go but mom is trying to find her keys: “Let’s go, let’s go! Time to go, mom!!!”

Scenario 3: As he is doing something contentedly and I am trying to rush him out the front door: “Be patient with me.”

Scenario 4: After swimming and tugging on a wet bathing suit: “It hurts me.”

There are many more phrases coming out of his mouth down here in South Florida. He is not speaking in paragraphs, but such sentences are really nice surprises that this mom obviously doesn’t take for granted. Of course, Adam also has lots of physical activity down here. For a child like Adam who always needs to move around, a full day of swimming, running on the beach, climbing and swinging at the park, and going for long walks all seem to be another key to organizing that precious neurological system of his. Mind you, I’m not sure how to replicate the extent of this — the sheer quantity of exercise back in Toronto. Yet it’s another clue into how Adam needs to organize his neurology and attests to the things that make him feel happy and calm.

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I was taking a forced break this week. I contracted that nasty stomach flu last Friday and today is the first day I’m feeling better. It’ll knock you down off your feet if you get it.

I realized too that it was a forced break and how I push myself too hard. I had been moving and fixing this new house for a year, I’m still doing it, I tried (with success) to transition Adam through a difficult time moving homes and then I suppose I should not be surprised that I got that nasty flu bug.

I got to thinking about how we push through things and quality of life. I’m a real doer by nature and compulsive at that. I often put way too much on my plate until I realize I simply cannot complete all the things I set out for myself. I don’t like to call it ’setting myself up for failure,’ but rather just that I still need to learn that compulsive doing is perhaps a way to avoid other things (which granted, I’ve been dealing with), and it’s just time to slow down and catch my breath.

We do it with our children too. We can throw so many things at them and change the course too soon. We doubt their schooling, their programs and we throw, oftentimes, too much at them to see “what will work” (to make them “better” or “progress”). Despite my intellectual knowing that this can create stress on children as well as adults and stress hinders any kind of progress, I’ll admit that I have the same feelings as many other parents out there. Thankfully, for the most part with Adam, I’ve stayed the course, that is, once we found the course that seemed right for him.

Adam and I are due for a break soon — to enjoy our new house, take leisurely walks in our new neighbourhood — to learn the routes that Adam enjoys creating to soothe himself and feel at home. We need to play a board game and some more Go Fish. We were doing nicely with that game. I helped Adam turn-take by using visual cues and the joy of this is, we are enjoying each other’s company in playing it.

I am feeling better now and Adam has been smiling a lot in his new home. One of my strategies was to bring Adam home early from school with his aide and surround him with familiar people, and this helped a great deal. It took three weeks before I really saw him begin to settle in. As you may remember from previous posts, he was having severe spasms that made us very worried about him, not to mention extreme sleep difficulties. Anxiety will create sleep difficulties in anyone, not just autistic people. In order to ease his anxiety, I’ve followed Adam’s lead and have tried to stay on top of when he is about to become over-aroused so I can redirect him to something less upsetting. Adam is pretty good at trying to do all of this for himself, but there are simply times, as he is still a child remember, that he needs some guidance and support. It strikes me as odd that we expect our autistic children to “behave better,” and do not consider the stressors in their lives with more deliberation and compassion. It was when I wrote down many notes about Adam’s behaviour during this transition, for there came a point that I didn’t know what else to do, that I not only came to see the patterns clearly, but I, as his parent, could settle down myself. My worries and expectations about Adam may have been so high, that I forgot to slow down for him too. I thought I had charted a pretty good course, but it wasn’t exactly what he had needed. It was at this point I decided to bring him home early from school for two weeks and enable him to have fun in his new home. It was also at this point that we began to see positive results.

Transitions are one thing — they are very difficult for all children, autistic people and especially for Adam. During these times, we have to take more time out of our “regular” routines to accommodate our autistic children. Sometimes we think we are doing everything we can and we can become frustrated with our efforts as parents. When we take the time to look carefully, it becomes easier to alter the accommodation to meet the person’s needs.

So we’ve come this far, and indeed I’ve learned another valuable lesson. Now….BREAK TIME! (Or maybe some Go Fish).

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