Monday, March 4, 2013

Now and then

As much as I try to just focus on the now I do worry about Nick's future as an autistic adult.  As he gets older that concern does intensify.  When he was diagnosed at almost three I had high hopes that he'd make so much progress that his disability wouldn't hinder all that I knew he could become.  I still have hopes but they aren't as high as they used to be. That's hard for me to admit or really talk about.  In part that's because I worry that it makes me sound like a bad mom to others or at least as someone who has lost some faith in their child.  How it seems to others is secondary -what's more important is that it bothers me that I do that.  I wrestle with that within myself.  I get angry when I allow myself to dwell on those worries instead of keeping faith and living in the now.  I don't struggle with faith in my son's abilities at all; I struggle with letting my concerns get the better of me.  That's my nature but it doesn't help me as a mom and especially as my son's advocate if I let that consume me.  I try taking deep breaths when I feel that coming and remind myself to think positively. 

Faith is something that means a lot to me.. if I believe in something or someone I believe in it wholeheartedly and none of that has ever faded even as he hasn't made as much progress as I had hoped for. There are a few blogs that I have been reading lately about adults on the spectrum and while some help me keep my faith that things will greatly improve for Nick, there are others that cause me concern because they echo my fears of what could be.  At this point I am pretty sure that Nick will always be in my care in some way or another.  That doesn't bother me.  When I chose to have him I never believed that parenting was something that ended when the child turned 18 and was in college or on their own.  What concerns me is that nobody is immortal and there will come a time when he will have to care for himself and be productive on his own.  Yes, I am referring to what happens when I am gone.  I am sure all parents worry about that but anyone with a special needs child probably tends to dwell on that a bit more.  Most parents envision college for their children followed by a career that will provide them and their future family with a good lifestyle and the ability to have all the trappings of a "normal" life. 

I've had people ask me what I want for Nick as an adult and that's not an easy question to answer.  I want him to be happy, self-sufficient, loved for who he is and accepted for who he isn't.  I want him to be able to express himself to others in whatever way he's capable of and have his needs understood and met. Nick will most likely never be considered to be normal by society's viewpoint but that doesn't bother me.  I am sure by the time Nick is an adult he most likely won't be in such a small minority among other adults.  With Autism rates rising as much as they are I am convinced by the time he's an adult he'll be among the many who are in the same boat as he is.

Normal isn't a word that applies in a household with an autistic child. Our lives are anything but.  In fact, I pretty much despise that word.  To me it sounds judgmental in of itself.  I prefer to use the word typical.  Typical doesn't have as negative of a connotation as the word normal.    Normal, to me, suggests that if someone isn't a certain way they aren't right.  That kind of thinking just flies in the face of logic and just basic respect for the differences between everyone. 

Tonight on MTV a show called "World of Jenks" will have its season two premiere.  This show is a reality documentary series that features a guy who moves in with a person for a week to get a feel for life from their perspective.  Tonight he'll chronicle his experience living with a 20 year-old man with Autism.  I have seen a few clips from this show and it looks like it will be an interesting show to watch. 

I'm sure watching what little I've seen of this show and reading about autistic adults has stirred up my concerns to a point that they are higher than they generally are.  When this heightened level of concern passes - and it always does - I'll better be able to focus on the now.  It's the now that will shape what happens then.  I suppose that needs to be my mantra and what I need to tell myself to calm down when my anxieties threaten to take over.  That and deep breaths and/or a stiff drink.

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