Since it’s April and National Autism Awareness Month, I wanted to point out a few things to those of you who do not know what it’s like to be mom to a severely autistic child.
My day. His day.
Is all about my son, Corbin. And it has been for more than 20 years. He’s turning 26 this year, and has some speech, what I call “utility language”, meaning that he makes requests and answers basic questions. But conversations don’t happen.
Aside from autism, my son is a very healthy, fine-looking young man. But he doesn’t initiate the basics in his life, such as showering, changing his clothes, or brushing his teeth. These all have to be requested and supervised by myself, my husband, or another responsible person.
And, my son’s wandering and elopement issues are constitutional, so there are layers of security in place in the home so that he does not, again, leave the premises on his own.
This all means that Corbin requires help with the small things, someone to cook for him though not actually feed him, and a person to point out that he needs to rinse after brushing and change his wood block calendar every day.
All this boils down to the fact that I personally have not left the house without being relieved by a sitter, my husband, or daughter. Needless to say, I haven’t been out and about the way the rest of world has.
At this time Corbin lives at home, and is happy using his computer pretty much 24/7. He is comfortable. Content. And has his life the way he wants it.
But where he lives will surely change in the next few years. With an autistic son who is approaching 25, we as parents have to come to terms with the fact that our son will need a special needs residential community before long. It’s not easy, even with an adult child, and God knows thousands of parents have made that choice for much younger kids, but, it’s something that must be done.
We in the autism community need much more than awareness. To me it’s always sounded like someone telling us a bomb is about to be dropped without giving directions to the nearest shelter.
Lots of good organizations have made the world aware of autism, but it’s high time we put practical solutions in place for those individuals. Namely quality respite care that’s available to any family in any income bracket and the establishment of living (and working) autism communities so that these persons have a place to call their own as adults.
One of my personal goals is the establishment of a program called “Mandy’s Mates”, in honor of a beautiful black lab named Mandy who was part of Corbin’s life for 17 years. That program, when it’s up and running, will fund the training and placement of companion dogs for autistic persons, like my son, who have wandering and elopement issues. If I have my way, there won’t be any more autistic kids and grown-ups drowning and dying fron exposure after they wandered off.
As a backdrop to everything I do and every dollar I earn, I will see the start of this organization and the placement of those beautiful animals in my lifetime. Guaranteed.
I’ve already got a 501c3 in place, but the rest is moving slowly. You can keep up with the progress here at Mandy’s Mates but as of this writing it’s under construction. Just bookmark it and check back every month or so.