Tuesday, September 10, 2013
Yesterday at the neurologist's office, the doctor for whom I have an immense amount of respect but one who has no filter on his mouth, asked where Ashley was going to live when I was no longer around. He pointed out that the choices were few and most were not very good, and that we all needed to work to improve those choices. He shared his philosophy that a society should only be measured by how it cares for those who are the weakest and most vulnerable, and he pointed out that he believes our society sucks on that.
None of this is new information for me. None of what he said is a surprise, and even though my thoughts on the matter were tucked away, I was still very much aware of them every single hour of every single day. And the doctor was exactly right - the choices are few and most are not good.
Even though our society has made advances on moving people from institutions to community living, the process of ensuring the community living choices are good and safe is still in its infancy. My oldest daughter has been in a community group home for many years, but I still am not happy with the arrangements. Problem is, it's the best choice out there for her.
And the issues for Ashley are of a much grander scale. Having a low incidence disability means finding the appropriate support will be extremely difficult. What I really want for Ashley is for her to remain in our family home, a place she knows and feel safe in, a place with memories of fun,good times and love. Not a sterile environment with people she doesn't know and staff that constantly changes.
The doctor yesterday said he feels we need to look at care for our disabled children in a similar fashion as our non-disabled children. Our non-disabled children often go to college and move out of the family home soon afterwards. He believes the timing should be the same for children like Ashley. He said we should be looking for living arrangements as soon as our children turn 18. But as much as I respect him, I think I disagree on this. I am seeing more and more families sharing homes multigenerationally. Three and sometimes four generations live under the same roof, and homes are being built or modified to support such living arrangements.
So I'm not giving up on my hope that Ashley will spend her life in our family home. I'm going to pray that the appropriate supports will be available, and that when she is 75 years old, she will look around her and be happy that she is home.