Saturday, September 28, 2013

Forgetting about Reality

Reality set in last week and I can honestly say I was happier in my delusional state. Don't worry nothing bad happened,  just some disappointment on my part. As the boys seem to be doing so much better every day and functioning really well at school, I had convinced myself that somehow we could find an activity that would be considered "typical" for someone their ages.

Over the years hubby laments that no matter how well the boys do, there is nothing in their lives that is "typical." They did not go away to college. They did not drive at the allotted age and still don't drive (of course for MrGS it has to do with seizures, but that is another story.). They still need one-to-one support in school. They have no friends. The list goes one....

So I decided that there was one thing that they could do that all the young people their age was doing and that was going on the Birthright trip to Israel. Birthright has become a right of passage for Jewish-American young people. After the bar or bat mitzvah, the next step in their Jewish education is to go on these trips to Israel where they can have a tactile relationship with their Jewish heritage. So many of the boys' peers have gone on these trips and the reports are fantastic. For students who have even spent their junior year abroad traveling around Europe, nothing compared to this trip to Israel I have been told.

The best part was that the Birthright organization even established a trip geared towards those with aspergers syndrome. I figured it couldn't get any better than that. A trip all their peers were going on, chaperoned by people that actually understood their needs and their issues, with other students that were just like them. And yes, I know several young people with aspergers who had even gone on the regular Birthright trip and had a blast..... Then the reality hit.

I actually had applied to the trip. Sent in all the paperwork and discussed with the boys about going. Now MrGS and CM2 were nervous of course. Not because its Israel, but travel for them is tough at times. Then hubby mentioned to me a truth that I just wanted to ignore...

If the boys still need support in school, and we don't even let either of them travel alone into our small town center, how are we going to send them halfway around the world? Honestly I had figured that  it was an aspergers support trip so they would know how to help and handle the boys, plus if we were in Israel ourselves at the time of their trip that was an added safety-net if they didn't do well on the trip. We could just collect them.

However, not only weren't there any airplane tickets left for that time of the year, well reasonably priced ones at least,  (it is not smart to try to go to the Holy Land at the last minute the week of Christmas- and yes, planning such a trip in September is last minute) plus the hotels that were left unbooked were also exorbitant. So no, hubby and I would not be "in-country" if the boys went.

Then my mother had a point too. She reminded me that even with aspergers there is a huge disparity in functioning level. That there are those with aspergers that are alot more independent than the boys and that is probably who is headed for this trip. I had to agree. The trip is planned so that those with aspergers are more comfortable (slower schedule, more downtime than a typical Birthright trip), but I am certain that the organizers expect a certain level of independence that the boys simply have not reached as yet.

So I called and removed their names from consideration.

Then I went into a big funk.

For all the success in school and even in their daily lives, the boys have yet to reach that level of "typical" that you want for your child. And yes you want "typical" so that they are independent, happy and self-sufficient. You want to know that they are going to be able to take care of themselves and get along in this world just like everyone else. I just wanted something that the average person their age did.  Is that so terrible?

I suppose the reality is what hubby said a few years ago.... the boys still need us too much. We can't die yet. Or as I wrote under the hashtag #youmightbeanautismparentif   You have a will and a guardian all picked out, but know that u can never ever die......

I keep that reality in the back of my head and recognize the fear that something will happen to us before the boys are fully ready to take care of themselves. Hubby is still worried that that day of self-sufficiency will never come for the boys. I suppose so am I.  Independence and self-sufficiency for the boys is our greatest goal and the one we work towards. Right now its baby-steps but at least we are going forward, just not as fast as I would like sometimes I guess. I unfortunately forgot my own advice- stop projecting about the future and take each day as it comes. Then one day when you look back you will see just how much progress your child has made. Of course, you still need a plan, goals and an endgame.

In truth, I think I just wanted to forget about "autism" for awhile I suppose. I wanted to fool myself into believing that there was less to worry about than was real. I wanted to pretend that we have less work to do then we need to.

Somehow there are times, when reality still gets the better of me, even after all these years.



Elise