The value of life of a complex special needs child is something that I find myself getting on a soapbox about all the time. In my recent post “My Outrage … Mother Gets Suspended Sentence for Killing Son” I shared my anger at the way a mother was not held appropriately accountable for killing her Down Syndrome-Autistic son. Last night a comment came in with the link (http://www.geocities.com/growingjoel/murder.html) to a site where an Autistic man has compared the sentences received by parents who kill their Autistic children as opposed to those who kill their “normal” kids. It is harsh to read but reality.
There is a declining segment of our population that I believe is a loss to society – children and adults who experience Down syndrome. Prenatal testing now identifies disabilities including Down syndrome. The choice not to bring a child with Down syndrome into the world is increasing. Will there cease to be the loving smiles of Down syndrome folks in our world?
Parents of complex special needs children with any diagnosis have burdens far beyond what most of us would understand unless we have been there. It is full of joy and sadness. The highs of elation at small successes are beyond description and the heartbreak of watching a child struggle and suffer devastating. It is hard enough to ask for support from friends, family, and the government. When requests are misunderstood and denied the defeat is more painful and humiliating.
Well meaning governmental programs sometimes confuse more than help. There is a changing attitude on the part of society relative to disabilities. There is a great deal more sympathy. This nice but can be counter productive too. The sympathy is often directed towards parents rather than the children with disabilities.
It has been suggested several times that we place Billy Ray out of the house. Each time it it has been hinted that it is for my benefit not his. While the sympathy is nice it comes across as “why don’t you get rid of your burden?” I have no problem with programs such as group homes, etc. if it some placement could be found that he could thrive in. He is too complex for that presently so we have created a system that works for him at home. I do have a problem with the idea that he should be placed because it is easier for me not what’s best for him. Someday I will be unable to take care of him and that will be different.
I absolutely agree that parents need more support. That is why I wrote Parenting Your Complex Child, do this blog and maintain my websites. It is my desire to help parents help their child. Hopefully this post will not minimize my belief in that need.
The kind of support parents need most is appropriate programs to assist them and attempts to understand what their day to day life is realistically. There needs to be some flexibility in programs to recognize the individual needs of each child as a person. That’s why I say “this is how I figured out what worked for Billy Ray” instead of saying “do what I did.” Too often programs are designed for the general population of disabled persons and complex children like Billy Ray do not fit into those programs. The support that parents need to customize the programs to their children is hard to get.
As long as disabled children and adults are seen as a burden to be dropped or stashed away somewhere and parents receive pity instead of support, we will continue to experience the isolation, desperateness, hopelessness and hear of parents hurting their complex children.