That November Day

One of the most frequent questions that I am asked is how we were able to get through that November day when we took Tyler to his residential home.  In retrospect I believe it is a critical question to answer because perhaps that very thought is the single reason why many caregivers hang on to a situation that they know they must let go of.  I know for me personally I was not able to face this possibility for years.  Even when the possibility of his transition was being discussed I was having a very difficult time reconciling it. 

Tyler’s mental capacity in most regards is that of an 18 – 24 month old.  His thinking is very one dimensional in that he best understands the immediate moment he is living in.  If something is not directly in front of him, or if a subject is in any way abstract, he is likely not to understand it.  I believe that a great deal of his anxiety and aggression may come from the fact that he cannot anticipate and control where he is and what he does.  When Tyler and I walked together he would gently reach out one finger and touch my hip every few minutes, and when we sat down to dinner he always made sure that his knee was touching my knee.  I interpreted this as his way of staying anchored to something for a sense of security.  Thinking about this made the concept of leaving him in someone else’s hands almost unbearable.  A heartbreaking reality about Tyler is that you cannot explain ahead of time what is about to happen to him.  Out of respect for him we always explained everything anyway….we always owed him that much.

The actual day he moved away is one I will never forget.  We took him to his day program as usual, and he was smiling as usual.  We couldn’t help but look at him and think about how he was perhaps leaving our home forever and he had no way of knowing it.  We had a very busy day of getting his furniture and personal items settled into his new house, lovingly preparing for his arrival.  Being busy was a good thing, as it kept me from collapsing under the weight of the fear and guilt I was feeling.  There was about one hundred times when I wondered if my wife or I would break down and not let our “little boy” go through what he was about to go through.  Still we kept moving forward.

We picked him up at his normal time from the day program and drove him to his new home.  There was a ton of support staff ready to meet us.  We sat him at the dining table and gave him some coloring books.  After about 15 minutes it was time to allow the staff to take over.  I hugged him, kissed him, and told him I loved him, and my wife did the same.  And then there was nothing left but to leave and with one closing of the front door a chapter of my life closed. 

In my worry of how terribly lost he would feel without me, I realized how terribly empty I felt without him.  For a while I could do nothing but think about him and how he might be sitting terrified without us.  I thought about how he might be lashing out at these strangers who dared to enter his personal space.  I waited for the phone to ring.  What if this were the biggest mistake of our lives and his?  What if he emotionally implodes and never recovers?

But as these thoughts tried to shake my foundation I had some great thoughts to counter them with:

1.       We had made a good plan that was filled with amazing people.  Tyler was far from alone.  My wife and I were being replaced by an entire SYSTEM devoted to just him.  These were people who were trained and vetted to be a good fit for him. 

2.       Just as importantly, and I cannot stress this enough, we knew that what we were doing was right for his long term future.  If we could endure the pain of the separation and the emotions that we would be feeling, it would get better over time and it would be the best thing for his future.

3.       Unless I planned to live and be healthy at the age of 95, Tyler would face this day regardless of anything else.  It was far better timing now before he became more rooted in his home routine, and the waiting list for residential serves got any longer.

4.       Most importantly is that he has every right to be an adult with a life of his own.  And as his Dad it is my duty to him to allow him to find his voice and to use it for himself.

So, in the end, was Tyler terrified?  For a while.  Did he lash out?  He did.  He kicked in walls as a matter of fact.  He refused to sleep in his bedroom the first two nights.  However, despite the lack of credit I was giving him, he kept moving forward too.  The panicked phone call from staff never came.  Instead of imploding, he accepted that his surroundings had changed and that he was “ok”.  Within a few weeks he was attending church, taking art, and learning new responsibilities in his new home.  All the while he used his day program as his safe haven and excelled there as well.  He is becoming stronger, and he is indeed being an adult.

The guilt indeed comes and goes, after all you cannot always use your head to overrule your heart, but I have been able to be alright because he has been able to be alright.  After our first 100 days, I’m willing to be ok with that.

Be well and good luck - Tom