Monday, April 27, 2015

W is for What Comes Next?

On Day 23 of the A - Z Challenge, W is for What Comes Next?

When I was younger, I never knew anyone who was autistic.  My only perception of autism was from the movie Rainman. Today, it seems that everyone either knows someone or has a family member that is on the spectrum.  

However, when I wonder about what happens in the future, I am very concerned.  My husband and I aren't going to live forever.  In the earlier years, I worried what will happen to David and Michael when we aren't around.  My daughter said to me a couple of years ago when she had started seeing her current boyfriend, "You know Mom, I told Tom that if anything ever happens to you and David, I would take care of David and Michael."  As they are getting older, I think David will be able to be self-sufficient.  I do worry about Michael, but between his brother and sister, he should be OK too.

But what about the others.  Sure, some on the more mild side of the spectrum will go to college and have meaningful careers.  Some will have siblings or close relatives to help out.  However, there are many more that have severe issues, impairing their ability to live on their own.  What will happen to them?  One woman I know has a 13 year old nephew with autism.  He is totally non-verbal and still in diapers.  He is prone to outbursts and is uncontrollable so he was placed in a hospital program a year ago.  They were told he would be toilet trained in 6 months.  He's not. For all intents and purposes, he's institutionalized.

Dateline did a one hour special earlier this month where Kate Snow and the Dateline team followed the journey of two autistic boys and their families.  Currently, developmentally disabled children can stay in the education system until they are 21.  Once they turn 21, they are no longer eligible for state programs.  Dateline reported on the 3 years after the boys turned 21 and how difficult it was for the families to get them into a good program, how the progress these kids made over the years of special education was in danger of being lost, how they families spent every penny they had to try and find constructive outlets to keep the boys from regressing in speech and social progresses.  The eventual outcome for both families was relatively positive, after great personal expense to the families, but frankly I was a little disappointed in the show.  I think it portrayed the exceptions but not the norm that happens to a lot of severely affected kids and their families.  I read that almost 80% of special needs kids ultimately live in broken homes, that one of the parents just can't deal with the situation and they leave.  At one point during the Dateline show, one of the alternatives was to place one of the boys in a program where the other autistic young adults just sat around all day and had no real structure or learning to their day.  They were just put in a room to occupy their time, lost in their own worlds.  

In the next few decades, as the children outlive their parents, I am very concerned as to what is going to happen to those incapable of caring for themselves and what type of care they will be able to get, if any.    



  1. I've heard that about special needs kids too. My son has mood disorder, and although not as taxing as autism, taking care of him can be exhausting. His meltdowns are dramatic, and he sometimes has to be held down, because he can be a danger to himself or others. It has been so hard on my husband and my relationship, but in the end he is a two-parent job. And as he grows older, it has gotten better. I know you will find your way with David and Michael too, because of what I've read so far, you're a wonderful mother.

    1. I hear you Lauren - it can be very exhausting and frustrating. My husband is a wonderful father but the issues can absolutely put a strain on our relationship at times as well. They definitely have gotten better as they've grown but I still get terrified at times thinking about their futures. We moms have to do everything we can for our kids and sometimes it still seems like it's not enough. But we keep on trying... xoxo