Today is World Autism Awareness Day.  My son and I giggled as I said it.  He replied, “EVERY DAY is autism day at our house, Mom.”  It’s so true.  While I want more studies and awareness about PDD-NOS/autism, what I truly want is more understanding and support for families dealing with it.  We have a staggering amount of children on the autism spectrum who are going to grow up.  Then what?  For me, I don’t see a single solution that has a great outcome.  I have a 19-year-old daughter who will need housing and care for the rest of her life.  She can’t be alone, and she can’t take care of herself.  She is fairly independent in some ways, and totally dependent in others.  What I wouldn’t give to have her off at college enjoying being a young adult.  However, this is my reality and I have to plan for the future.

My son deserves a “normal” adulthood.  I can’t put his sister on him, and his future family.  I’m sure he will be involved in her decisions, but having her live with him is something I WON’T do.  I just won’t.  He has lived with this since birth, and when the time comes…he needs to go and live his own life.  Recently, my son and I went on a short vacation to visit my mom, and it was awesome to have him alone.  It’s another reminder of what having a normal teenager is like.  He’s independent, funny, social, and I am taking it all in.  When Phoebe is around, I am on at all times. I am teacher and parent. I can’t let my guard down or stuff happens.

Another option is that Phoebe can live with me until I can no longer take care of her.  This is what any mother would/should do.   However, what kind of life does that leave for me?  I am 47-years-old, and I have given up a lot of things to be her rock.  I have turned down dinners, outings, and events, left early and cried my way home.  Sometimes getting a sitter can be too hard on everyone…it’s just easier to be home.  I cater to her autism, I don’t have a choice.  The more I used to fight it, and try to change her…the worse our lives became.  It wasn’t something I could battle with.  In this family, we have all learned to understand even if we have to roll our eyes, and laugh hysterically once in a while.  Phoebe wants to live with me right now, but as she gets older I see her gaining a little independence.  I see that she wants a social life without me around.  She loves her caretaker more than life, and wants her over all the time. If I don’t watch, she texts her at least 10-15 messages in a moment. She’s more like a friend than someone who is taking care of her.  This is normal.  Phoebe wants to do fun things with peers.  She deserves that.  Don’t we all?

Researching group homes has been my latest project.  It’s not something I plan on, but I want to have all the information I can.  There may not be a defining moment about what I should do, and I may have to adjust ideas and plans as years come.  To me, this should be something our nation, as a whole, needs to look at.  Why don’t we have housing for adults with autism/special needs in more areas?  How do we do this?  We have come this far to make Word Autism Awareness Day, so what do we do about it? I think we are all aware.  VERY aware.  Now…let’s make some plans so that families can live with peace knowing their children/adults with special needs are taken care of.   (and that they are enjoying life too!)

It’s World Autism Awareness Day.  Now let’s get something done.