When Rest Is Work, Too!!!©
Closely tied to the issue of hyperactivity was the fact that the autistic child did not know “how to rest” and “do nothing” during the day. It was almost as though these children had to be constantly doing something during the day… that the “day” was for “doing things” and the night was for sleeping… and again, that there were no “in betweens” allowed when it came to what the child did during his waking hours.
If there was one thing I had observed with Zachary, it was that his autistic tendencies manifested themselves more if he was not specifically working on a task. During his "downtime", when no one was actually "working with him on specific issues", his preference was definitely to spend that time in bringing "order" back to his world, his way... and for the most part, that involved doing things like spinning – non-productive activities.
My sister and I were once joking about how many naps she took during the day - she was an elementary schoolteacher. I commented on the fact that she took many little "power naps" during her time off. As she looked over and grinned, my sister simply responded: "Rest Is Work, Too©!"
How true! For everyone... but, especially so for the autistic child! The autistic child appeared to not know how to "truly rest", to "just relax". Indeed, his relaxation came from often, intense physical activity in the form of running, jumping, spinning, etc. As such, during the day, the autistic child experienced very little rest if he was unable to properly process the "parts" that made up "the whole" during his daily activities. To rest, by definition, implied leaving one’s stress or frustration behind – hardly something an autistic child was capable of doing given his life was often one of complete frustration! Rest - yet another area to work on!
For the autistic child downtime was not "rest" but an opportunity to slip further into the world of autism. As such, life became exhausting for parents who tried to keep their children constantly engaged in the daily battle against autism... a battle waged every day, every hour, every minute, every second!
In looking back, I realized that my husband and I were exhausted not from work, but were burned out because of all the work Zachary required. We had also not slept a full night's sleep in over two years until Zachary was put on a casein and gluten free diet. And the waking hours with our son were nothing short of completely exhausting. All opportunities for rest, both during the day and at night, had completely left our lives as well. Burned out, we had to leave corporate America and make a lifestyle change. Although things were somewhat better today, life with an autistic child continued to be draining and exhausting on all family members... but for our family, institutionalization was not something we would have ever considered. Given what I now understood about autism, I was glad that was a decision we had made early on.
It was especially critical to understand that institutions were perhaps the worse thing/place for an autistic child. In an institution, the child would have too much downtime... and thus, slip further and further into his own autistic world. I suspect few, if any caretakers in an institution would be there, constantly engaging and caring for an autistic child, every waking minute. Institutions, generally, simply did not work that way... and thus, in my strong opinion, most simply would not benefit the autistic child!
Once again, I believed the key was in teaching the concept of rest and what can be done during "rest times"... I still struggle with this one... as I was sure all parents did. I was not a person to take much "rest" in the first place. Yet, there were indeed times when the ability to rest at will would certainly be golden. The reality of life with an autistic child was that it was simply totally exhausting to constantly be engaging a child... exhausting for the child, and exhausting for the parent or caretaker... and exhausting for siblings as well. Indeed, for the entire family of the autistic child, and especially the autistic child himself, "Rest is work, too!©"… and in this particular work - as difficult and overwhelming as it was – for most families, the “pay” per hour, was basically non-existent because in spite of parents efforts, all too often, the child simply slipped further and further into his autistic world!
Indeed, for the autistic, downtime was very much detrimental – simply providing an opportunity to slip further into isolation – to slip further into the clutches of autism. Rest, yet another area to work on – something so “natural” that once again did not come easily to the autistic child – something once again, that had to somehow, specifically, be taught!