Navigating the Path

Parents of children with disabilities ponder what will happen when we are unable to care for our kids anymore.  For many years that day seems far away but there are few days that the thought isn’t there.

When Matt was young we knew that his best years of learning new skills were when he was under 12 and his earliest years were best.  We didn’t have a diagnosis until he was 3 years and 4 months and it took five months of his young life to even begin  the intensive in home ABA therapy that made a significant difference.  Many families have had to wait longer while that learning window slips away.  I felt desperate to get started knowing that we were struggling just to keep him safe. My heart aches when I hear of the delays for other families.

In those early years I used an old trick learned in my childhood to keep Matt safely in his room while he slept. (My brothers and my father were all engineers) I had learned to pop the doorknob apart, turn it around and lock Matt in the bedroom.  I’m a little ashamed to admit we did it years ago to my youngest brother when my parents were out and he wouldn’t stay in bed.

Matt was even more of a wanderer when he was younger than he is now.  We had to lock him in his bedroom until we knew he would seek us when he got up.  Persons with autism are weak in understanding boundaries and have been known to enter neighbors homes in the middle of the night. I couldn’t live with the thought of him leaving the house at night and he wasn’t safe even in the house without supervision.

I needed a safe place in the house for the boys to be unattended when they slept, so the bedroom that they shared was barren of furniture, just a toddler paradise of two twin mattresses made up as beds on the floor.  No heights to fall from, no swinging doors to catch fingers, and a baby monitor outside the room.  They loved it and at times jumped on the mattresses like little monkeys, and I didn’t have to intervene.  My mother always said, “You don’t have to see everything.”  I knew that they were safe in there and they had some brother bonding time in a way that Matt could enjoy. I will admit I enjoyed listening to their fun on the monitor, because it was so special.

Matt’s future permanent home has only one exit to the outside that isn’t controlled, so far.  It is such a fire hazard to have the escape locked that we aren’t planning to do it unless we are desperate.  He needs 24 hour supervision and there will always be someone who will be with him. If it becomes a problem an additional key deadbolt will need to be added.

We are very fortunate with the special people who are stepping up to care for him.  My husband and I are aging and can’t keep up what we have been doing.  We have needed to invent a solution for Matt’s long term living situation for a long time and we have begun.

We have looked online and visited places.  We have talked to other parents and families.  There are not appropriate options for the long term for many of these adults.

We are designing one for Matt.    Trial and error.  Blazing the unblazed trail.

My heart goes out to all families who struggle with this challenge. In the spirit of helping others on the journey I am sharing what I have learned.