Autism and getting out and about with your child.
With the summer arriving, and the children soon finishing school many parents are speaking to me about getting out and enjoying the summer with their children. This can be somewhat more complicated when one or a number of your family are autistic. In many of my blogs you will read about our experiences with sensory integration and how deficits in this area turn your children into energizer bunnies. Before we understood the boys’ sensory needs and were just trying to cope with the diagnosis, one thing was clear, the boys’ physical activities were both frenetic and unpredictable.
Being in a nightmare
So how do you take a frenetic and unpredictable child out walking with your family or to the mall or the park or the hundreds of places that we all simply love to go to during the summer months. To me our boys were like clockwork mice, once let loose were everywhere and nowhere. They terrified Valerie and I, just trying to keep an eye on them was a nightmare. And Conor and Eoin were incredible runners. As twins, they frequently collaborated when it came to bartering for something they both wanted, but when it came to being outside the always ran in opposite directions. It was like they planned it that way.
So, what did we do? Well first thing we did was lock all the windows and doors in the house. So at least we felt safe while we were at home. One Christmas season when the boys were five we had some family over to her house and we were all generally milling around enjoying the season. I’m not sure how to explain it, but a sixth sense, the one that parents always have, told me that one of the boys was missing. I ran to the front door, saw it open and ran out to the front garden. And from there out to the street. About 100 yards up the road I could see Conor’s blond head disappearing down a hump in the road. By the time I caught up with Conor he had run across a busy tee Junction at the top of our street. It was nothing short of a miracle that he wasn’t knocked down.
This incident and others like it made it clear to Valerie and I that the boys couldn’t be contained. It is like squeezing a balloon, no matter how hard you tried, it would always pop out somewhere. Also, it was very clear that the boys needed a lot of physical activity, even craved it and if we were to have any peace, we needed to give it to them. It would be years later when we met Sarah Field, at Redwood pediatrics in Santa Rosa, that we would fully realize the importance of this. But as with all parents we understood our boys best and had a sense for what needed to be done.
So, a decision was made. As much physical activity that the boys could take, we were going to give it to them. The plan was that when the boys went to bed they were going to be physically tired. Not mentally and emotionally exhausted but physically tired. In a controlled way, we needed to allow the boys the latitude to do what was needed. Val and I adjusted our lives and worked out our campaign. We figured out where we could bring the boys that provided plenty of space for them to run in while at the same time being far away from dangers like roads.
Getting out there
Parks were the obvious choice, and the boys loved swings, slides and particularly climbing frames. Over time they progressed to scooters and later bicycles. And for my part I got a faster bicycle and learned how to corral the boys when needed. We went swimming together at the local swimming pool and beaches within driving range of our home. We picked our time to go to the mall and the supermarket. We tried to ensure it was not too crowded and we made sure that we understood the layout, exits and so forth. That way we knew if the boys were heading into danger or just over to the TV’s.
It was a team effort; Valerie would do the shopping while I facilitated the boys’ wanderings within the store. Unquestionably this was a two-man job and overtime Val and I figured out how to make this a reasonably efficient enterprise, while meeting the boys’ movement and curiosity needs. Was it all fun and games? Certainly not, we did have our meltdowns at the video shelves and elsewhere, but over time the strategy worked out. In many ways Valerie and I merged our needs with that of the boys and came to a kind of accommodation that worked for everyone.
Making changes for the better
Gone were my golfing days, replaced with long cycles throughout our local parks and days of discovery in the Woodlands of our neighborhood. Not everyone in our social group understood what we were doing, because if you don’t have a special needs child, it’s almost impossible to imagine what it’s like. But Valerie and I knew that this was something that we had to do for all our lives to be sane. I was also a self-confessed workaholic, working in the corporate world where family needs were rarely mentioned. To make our life livable, I had to reorganize my time so that I got my job done. But at the same time was available to my family. None of these changes were simple to make, but were essential if we were to survive as a family unit. It was just a question of having a life or becoming a victim.
Valerie and I work with families all around the world. People from every background living in all sorts of places. If we were to identify one of the key factors which dictate the future promise of an autistic child, it would rest squarely on the ability to make the life changes that I am describing here. And it’s no burden to carry, going swimming, exploring the local Woodlands, raising the kids around the park, camping by the ocean is far from a tough existence. In fact, for me I believe that it was the making of life’s experiences which we all look back at now fondly. Rather than losing ground in any sphere of my life it was quite the opposite, even in terms of my career which I once held so singularly sacred.
Dealing with society
As you go down this path, society at large will have plenty of comments. Our children particularly in their early years are poorly coordinated and to the untrained eye undisciplined. They also pull stunts or just melt down in ways that are only understandable by those who are parenting children like ours. For my part I ignore ignorance when I see it and if I see someone attempting to obstruct my child in an unfair way, I deal with it. And I do this regardless of how the behavior of my child might be perceived. I don’t get mad or aggressive, I just know how to push back. Conor and Eoin were simply on a different path to their typically developing peers and they had every right to a rich childhood. The days of being quietly hidden from society is thankfully over. But it’s up to us to make sure this does not change.
What to look forward to
These strategies worked and overtime the boys calmed down. From riding bicycles in the park, the boy’s progressed into all kinds of clubs including athletics, gymnastics, tennis, horse riding, sailing to mention just a few. And you know what, they excelled at these activities over the years, because in many ways they didn’t simply feed their sensory needs but rather fed their souls. It was time consuming for Val and I, but then, where you find a child succeeding in any endeavor, close behind you find his parents.