Its been 5 years since Tyler entered a residential facility.
5 years.
I think it would be fair to summarize the last 5 years for everyone.
So often I read comments people post stating their son/daughter could not enter a long term facility because they would not survive. I have said before and I will say again, that for the MOST part, this is self-serving bullshit. Before you condemn me for saying so, please understand, I am qualified to make that statement.
Five years ago I said those very words about Tyler. "He will implode without me" was my phrase of choice. That phrase empowered out co-dependency. What I was really saying was that I couldn't face the fear and the guilt of what that separation would mean. The truths that stared me straight in the face 5 years ago was simple...I will die before Tyler. My wife will die before Tyler. Ty's sister has the right to choose how she lives without pre-determined obligations. If I didn't secure his future he might have someone else do it after I am gone. While that might be great for me (dead people feel very little guilt), it would be horrible on Ty, and I wouldn't dream of leaving his living decisions to a stranger.
5 years ago I left Tyler at the kitchen table of his new home...with someone to watch over him that was not me. For days I thought the absolute worst, and to a degree that was exactly what was happening. I was being pulled away from my co-dependency and so was Ty. We both experienced anxiety that was consuming and terrifying enough to make anyone consider themselves crippled by it. But time marched on.
Within about a year, we both turned a corner. But I still remember some very shrewd advice I was given prior to the transition. The person told me "residential homes will be a 50/50 relationship of love and hate. She was absolutely correct. 50% of the time things are smooth and 50% of the time you wonder what the hell is the matter with people.
Now, 5 years later, we count our blessings. Tyler is relatively healthy and happy. There are people assigned to him that have accountability to do the right things. There is a TEAM of people now assigned to what my wife and I tried to do ourselves. BUT...we have things we must remain diligent about. Doctor appointments seem to get postponed, turnover is high and compromises trust, and people must be thrown in without a real working knowledge of the client.
In five years I've learned more lessons than I can count. Ty CAN live without me in the right scenario. I will never be any less of an advocate or defender of Ty regardless of where we are. When you have good staff members, love them and protect them. Looking out for Ty's future, and the future of the rest of the family is not anything to feel ashamed over. And for God's sake don't ever stop fighting. Be fierce and never waiver.
If you are agonizing over the decision to release your special child to residential care, please reach out to me. The decision needs to be based on facts and not the emotion of it. While that is a million times easier said than done, it is the right way to be a steward for your loved one.
Be well and God bless. Tom