I got a call this morning from someone wanting to know if I would be interested in writing some articles for a publication that focuses on parenting children with special needs. As with most everything in life, this publication has a very clear defined platform, all though they might not advertise it as such. In the course of talking with her I could tell very quickly that they wanted an article that would be nice. I was not in the mood to be nice.
Nice... Flowery.... Tell about how wonderful it is to be blessed with a child that is so specially gifted. Rave about the joys of the experience, about how it has made our family stronger, how we would not trade this opportunity for the world. She used words like hope and positive. Several times she used the word truth.
The truth is that it sucks. There is nothing great or heart warming about it. There is no way to sugar coat it, to make it a positive. Truthfully, it is just not good.
I hate the term special needs. There is nothing special about it. Different, but not special. Unique, but not special.
It has not made me a stronger person nor has it strengthened our family or our marriage. If anythind it has done the opposite.
The statistic is something like 80% of all marriages that involve an autistic child fail. The stress of dealing with the day to day makes the idea of sharing 50/50 custody seem like a break, sometimes the only option in order to be able to breathe. I know how bad it sounds, but that is the truth.
Hope is something that rarely is factor in my daily routine. There are glimmers of hope that are found in new medicines or therapy, but they are always short lived. Don't get me wrong, we have good days. We have some really good days, the problem is that the good days make the bad days even harder. The reality is that it is not going to get better. He is not going to wake up one day and be free of this. That doesn't offer much hope.
I love him with everything that I am, but that doesn't make it any better. There is nothing that I can do or say that can take away that struggle that he feels. There are times when he asks me to make it stop, to help him be able to stop all of the feelings. I cant do that for him, that is the reality.
She wanted the truth, but as with most people, I don't think they can handle the truth.
1 comment:
Two thoughts...
One, that last line had me picturing you yelling at a young Tom Cruise a la Jack Nicholson in A Few Good Men.
Two, I love your honesty about the struggles you have. I suspect the "truth" that you offer would be far more helpful to your typical parent of an autistic child than the flowery, good tripe that they are often given.
May God richly bless you and Brett and the kids!
Post a Comment