When you have a child with differing abilities there are many “Pills” you must swallow..the diagnosis pill, the acceptance pill, the journey into special education pill. We have more pills to swallow than Carter! Some pills are a bit easier to swallow than others………….
We have known for quite some time that Zach will never be able to live independently. He will require a lifetime of round the clock supervision and care. When he was diagnosed with Ring 22 syndrome and autism almost seventeen years ago we had no idea what the future would hold and of course we remained hopeful that through love and intervention our son would make amazing strides. We knew very little about Ring 22 syndrome and even the specialists we worked with had never had a patient with the syndrome. I found a group on the internet and learned very quickly that as with most things there is a spectrum of how the syndrome manifests itself. There are commonalities: Speech delay, Cognitive concerns, many individuals exhibit behaviors consistent with Autism Spectrum Disorder, behavioral concerns etc etc etc. I did not however know about autism regression and never anticipated to see some of the things that Zach was able to do fade away never to be seen again. I never expected that he would take one step forward and then three steps back. We never ever envisioned that his needs would be so significant.
That all sounds so incredibly negative …Zach has made amazing strides and he still surprises us everyday but the bottom line is that I have a soon to be 20 year old that can not do anything independently. I have a soon to be 20 year old that needs assistance with all Activities of Daily Living, that is non-verbal, that has no sense of danger, that would leave a home and run into oncoming traffic, that could choke because he doesn’t eat properly, that still has sleeping difficulties, that has difficulty entertaining himself, that eats things he shouldn’t, that will get into his feces etc. This is a very negative picture, but these are the cold hard facts. Of course he has many wonderful qualities, he is sweet, funny, adorable, tenacious and I could go on and on ……….We love him in spite of and because of all of these things but it scares the absolute shit out of me that someone who does not know him and love him will not see past all of the tough stuff to get to the good stuff. There are no words that can possibly describe the fear that overtakes me when I think of someone not seeing who Zach really is…but only seeing him as a difficult “client” in their care.
As the years passed and Zach did not make the progress we had hoped for, it became apparent that he was significantly impaired and would never be able to live independently. In the early years we never really talked about what the living arrangements for him would be in the future. When people would ask me “Do you think he will be able to live on his own and take care of himself?” I always answered “I don’t know, we will have to wait and see.” but I knew….I knew it would never be. Yet another “pill” to swallow. We also came to the realization that we would not be able to provide the level of constant care that Zach will require as we age.
When he was little it seemed that these rough decisions were so far away yet in the blink of an eye here we are and the time has come to start the serious discussions of what we want for Zach’s future. Some may think we are awful to think about moving Zach out or that we are selfish. I suppose there is an element of selfishness, of course Mike and I are ready to live as empty nesters and to have a level of spontaneity in our lives that is afforded to most our age. But I also feel we would be selfish to try and keep him here with aging, tired, worn out parents. Some may be thinking that his older sister should take him to live with her once we can no longer do it. I will say vehemently that not only do I not expect her to do it, I don’t want her to do it. Of course i want her to look out for him and make sure he is being taken care of and treated well. But just as we want what’s best for Zach, we want what’s best for Emily. Our dream is that he be in a place where is is safe and happy and well taken-care of. We feel that by starting now we can play an active roll in his adjustment to his new surroundings, take him on outings, bring him home for dinners, family events and holidays.
Nothing about this decision is easy, it is by far the most difficult and heart wrenching and bitter pill we have to swallow.
PART 2: THE SEARCH IS ON…AND IT IS GOING TO BE A BATTLE.