Thursday, January 20, 2011

My Biggest Fear

My biggest fear is the future.  Not necessarily my future.  But Brian's future.  The not knowing part of his future.

Every once in a while I read something or I see something that just sets me into an anxiety attack.

Yesterday I had one of those moments.

I was at a residential home teaching the staff how to do a safe transfer for a person with an amputation into the shower.

The home wasn't nice.  It wasn't particularly clean, it smelled, and it really felt like an institution to me.

Adults were walking around aimlessly, not talking to anyone or they were sitting in chairs staring at the television.

There was no happy vibe there.  No interacting.  It was eerily quiet for having over ten people milling around in a small area.

And I start to wonder what their stories are.  Do any of them have autism?  Did they choose to live here so they could have the independence they craved or did they not have family members who could continue to help them make a course through life?

I read an article today that said that for a child with autism to have a higher chance of being able to live independently as an adult, they need to talk by age six and have an IQ above 50.  Brian is six.  He talks.  But he doesn't talk functionally.  Some days he'll go all day without uttering a word.  Some days he'll sing me a song.  He never really has a conversation with me, unless I can format it so all my questions are yes or no or I'm specifically asking him to label things for me.  Brian's had two IQ tests done (talk about anxiety- and anger, and sadness, and everything else you can think of)- and they both came out above 50- but not much higher.  He's really in a spot on the spectrum that makes it hard for me to predict what his future will hold.

I have always said that Brian will live with me forever.   The plan is to buy a home that we are able to remodel to have an attached yet separate apartment. Yet, of course I dream that he will be able to live on his own and that he'll want to and he'll have his own hopes and dreams that I will encourage him to strive for.

The worst fear is my passing away and not leaving someone that will continue to care for him.  And him ending up in a home like I was in yesterday.  This train of thought is so draining and depressing, yet it could be a reality.  It's so important to plan for these special kid's futures, yet almost impossible to know what they may hold.

8 comments:

Apples and Autobots said...

First, hugs to you. I'm sure that your experience that day must have been awful. Second, I highly doubt that Brian will EVER end up like that, because he is fortunate enough to have a mother who WILL plan for a better future for him, no matter what that may be. Our children have so much potential. It really IS hard to imagine their future, because after long bouts of no progress, they can suddenly make huge leaps forward. All you can do is pray for the best, but plan for all possibilities. Making a plan doesn't make it reality, and it will give you peace of mind.

Christina said...

That home sounds miserable. I know that Brian will have much better than that because he has you. What you've expressed is a fear that all of us mothers have. Everytime I get in a car by myself, or go on a business trip, I get a little few about what my babies would do without me.

Lynn said...

OK, you're not supposed to put that in writing...that part about us passing away. My worst fear. I actually talk to Lauren about this way too frequently. She thinks I'm nuts.

Heather said...

@Lynn-
Have you ever watched Autism, the Musical? The one mom says out loud, something along the lines that she hopes her daughter passes on before she does. It's one of those moments that everyone is like, woah, did she say that? But after it sink in you get it, you understand (if you are a parent to a child with needs anyways)...

MommyToTwoBoys said...

Oh my goodness Heather! We are the same person! I can not tell you how much THIS week alone I have been stressing about this! It started with a workshop I went to where the guy was really a huge Debbie Downer and made me have an anxiety attack, just like you said. Then I looked up Autism on Wikipedia for my latest post and read some stat about the number of people with Autism who ever live on their own and I literally felt sick. I have been tearing up over this all week.

What perfect timing to read your post and know I am not alone. And I can't agree more, my biggest fear is my death. Not because I would miss life or my boys, which I would, but the worst is thinking that my son wouldn't have me. His advocate and his world, at least right now. I can't imagine how in some ways his life would actually end when mine did.

Holy crap, that is extremely depressing. I need to go drink some wine and watch some bad TV and chill out!

Heather said...

Yeah sorry, definitely wasn't an uplifting post- I try not to be so damn depressing too often- but it's real, as we all know :/

Christina said...

That home sounds miserable. I know that Brian will have much better than that because he has you. What you've expressed is a fear that all of us mothers have. Everytime I get in a car by myself, or go on a business trip, I get a little few about what my babies would do without me.

Apples and Autobots said...

First, hugs to you. I'm sure that your experience that day must have been awful. Second, I highly doubt that Brian will EVER end up like that, because he is fortunate enough to have a mother who WILL plan for a better future for him, no matter what that may be. Our children have so much potential. It really IS hard to imagine their future, because after long bouts of no progress, they can suddenly make huge leaps forward. All you can do is pray for the best, but plan for all possibilities. Making a plan doesn't make it reality, and it will give you peace of mind.