Today I got to understand something I had always knew but never truly appreciated fully.
Those who are not involved in the day to day upbringing of Autistic children (or others with special needs) really have no concept of what is involved in the most minuscule decisions.
I was having a conversation today that kind of put the reality to the forefront, but it was a few minutes later when I was speaking to a friend who also has an autistic child that I realized it fully. Those who are not hands on involved in the day to day decision making for children with autism or other special needs, really have little understanding of exactly what is involved with it.
Things have been on a rollercoaster for us as a family in the last little while. Work is slow, and this means paychecks are lower. It also means that decisions have to be made as to what is most important and what can be let slide. People also offer to help. The help is always appreciated, that can never be denied. However unlike those without an autistic child, even the act of accepting help does have it’s issues. Every decision has to be made with a view towards how it will affect our child. The fact that this is done does not seem to escape people, what does however escape people is the why it is done.
A child with autism is never guaranteed to react in any given way to change. They are extremely similar to a person with OCD when it comes to things like change. And to add to our concerns is the realization that not only are we raising a child with autism, we have also realized about a year ago that another of our children has ODD and OCD (Oppositional Defiance Disorder and Obsessive Compulsive Disorder). Every decision we make in our home requires planning and every change in routine requires preparation. This preparation can involve as much as 3 days or more of discussion with the child regarding what is going to happen.
To give an example of the issues that can arise, a couple of years ago, our vehicle was written off due to a relatively small accident. The children were not in the vehicle, however the loss of the vehicle cost our son dearly. His routine was destroyed and the fallout was surprising. The simple act of losing a vehicle in a situation beyond our control set his development back at least 6 months because of our inability to prepare him for the change.
In April we upgraded our replacement vehicle. The upgraded vehicle was discussed with our son for close to a week with him even getting to see the new vehicle before it was brought home. Even with this level of preparedness it was still close to two weeks before we could get him in the vehicle without there being some form of issue.
I grew up spontaneous. In my teen years, it was not uncommon for me to just do what I wanted including travel without a moment’s notice. This is no longer an option and will never be an option for me again. Life has intervened. Now we just have to make it so those who also interact with our children understand, spontaneity is not a viable option.