Living with Autism - Part Three

Fears:
Time keeps passing by. It seems to go faster and faster even when I consciously make attempts to slow down.

Sam will be 5 in April of 2010.

He will be ready for Kindergarten in the fall of 2010 by age, but nowhere near ready for Kindergarten.

Where will he go?
How will he be looked after when someone needs to be in supervision of him at all times?
How do Jen and I put our trust in someone we simply do not know?

These are questions we didn't really ask all that much when our daughter was making the transition from co-op preschool (where we had a hands on roll in observing her at school) to public school. Rationally, it is easy to come to the conclusion that she is much more capable of being on her own and communicating because she does not have autism. This is another example of how our daughter will be facing challenges in her own family because of the amount of energy it takes her mother and I to keep Sam safe.

We'll be embarking on the journey of finding out answers to these questions after the winter break. I wish that money were not such a huge hurdle for us only for the sake of having enough to send Sam to a specialized school or private school that is equipped to provide him with the kind of support and therapy that he needs.

Fear is an unfortunate companion in my life (I am sure in Jen's as well but I can't speak for her) when it comes to Sam.

I find myself the recipient of countless invitations from friends for a broad range of things from camping, boating, and hiking to parties, bbq's, and dinners. I have ti turn down nearly all of those invitations because my mind plays through a series of scenarios that involve Sam's safety and the amount of energy it takes for me to be with him the entire time (or for Jen).

Not only is it absolutely unreasonable to think that any place or anyone can have things set-up to accommodate Sam, but it is really no fun at all for either Jen or myself to be in a social situation and not be able to be social.

Its no wonder people eventually stop asking. It is very difficult for me because I am, at the core of my being, a social person. I love people and friends as well as the interactions with other adults from ALL walks of life. It is the sociologist in me that keeps this love of 'soaking it all in' alive.

The fear is real. Things like: Running in front of a moving car, cutting himself, electrocution via an electrical outlet, poisoning, the list goes on and on.

Even in our hyper vigilant home and constant monitoring of Sam we have stopped him from actions that are potentially fatal on many occasions. Each time we have to evolve further and adapt to prevent it from happening again.

Aside from the fears in the injury department, there are fears that I keep at stuffed down deep that surface once in a while. These are fears about the future.

Here's a tiny glimpse of some fearful questions and such:

Q: What if I died suddenly and unexpectedly?
A: It would be impossible for Jen to raise the kids alone. Sam would be without me. This thought does not usually surface.

Q: What if Jen were to die suddenly and unexpectedly?
A: Like the thought of my death, this would be the death of me in so many ways. I would also be faced with an impossible task. Like my own death, this one rarely surfaces in order to help me cope with the rest of life with less panic.

Q: Will Sam ever speak? Will he ever be able to communicate?
A: I think he is on the verge of big leaps into communication now. It still could be that he will never effectively communicate though to anyone but those who know him well.

Q: What if Sam wanders off?
A: This would possibly be the most catastrophic thing ever. With no communication ability, no sense of safety... This one stops here because writing it freaks me out.

Q: Will Sam ever experience things like driving, dating, love, going to a school dance, etc.
A: Only time will tell.