Eddie By Helen Dovenbarger 

How do you live with an adult child who has profound developmental disabilities? 

To try to answer this question, I must look at what brought me here.  I prefer to look at the past in stages.

The first stage is the diagnostic stage.  Born a beautiful little blonde boy, we thought he was perfectly normal.  After a few months, we suspected this was not to be true.  So began the search for diagnosing.  After almost a year and a half of searching for answers, we finally learned he had Autism.  It would take us many more months to fully realize the extent all that this meant and the impact it would have on our family.

So began, “ living with and loving this sweet boy who has many limitations and accepting him as he is” stage.  Hours of entire family teaching him most basic skills was challenging and, at times, frustrating.  Although, he never learned verbal skills, he has learned to feed himself, became potty trained and learned some basic control over his own environment, many times while screaming in resistance.  Left alone, he could entertain himself for hours while sitting on the floor and spinning a plastic bowl, or just screaming.  He did not like to be touched or held, but we continued to try because we all loved him.  Eventually, he began to understand ( I think ) that we were going to continue to touch and hold him , so we started into his routine - touch and hold me on my terms and when I want you to.  Life became easier.

The next stage was looking for school and other services so he could live as normal a life as possible.  He went to
“special school“  from 4 years old until he was 22, when he could no longer attend school in our state.  Things went relatively well until he reached puberty.  At 13 he began having seizures ( some life - threatening ) and his behavior became very violent at times - hitting, screaming, knocking pictures off walls, putting holes in walls, turning over furniture, and going many nights without sleeping at all - at times, screaming all night.  We found a Doctor , who, after years of searching for the right medications to control seizures and behaviors,  he found the right combination.  At 21, when the seizures were mostly under control, the behavior improved and he once again was our sweet boy.

When he could no longer go to school,  and I had my terminally ill Mother living with us,  and the 2 older children were grown and away from home ( they were wonderful with him and so helpful ) I began the next stage which was looking for services again. 

Ed lives in a specialized facility now and seems happy and content where he has lived since he was 23.  It is a beautiful home which he shares with 7 other residents.  We moved closer to him so we are able to visit and bring him home on a regular basis.  Although, Ed does not talk or show much facial expression , when he gives us a hug and allows us to hug him for a brief moment, the love that we have for him is almost overwhelming, knowing all the struggles we had to conquer to get here.

The present stage is the last stage for me, what will happen to him once I am gone?  Hopefully, he can stay where he is, but there are no guarantees.  I do not expect the 2 older children to monitor his care as I have, as they have already spent many years sacrificing their parents time and attention while growing up. We all became experts at taking turns.  But they will because they love him and want for him the best life he can have.

The final stage, with all the struggles and frustrations which come with all the other stages, may be the most difficult yet.  Although he’s in a good place , we wonder what he will think when he no longer gets to come home or see us.  But we have to leave all that to “ whoever watches over those who can not care for themselves.” Hopefully, he will always know how very loved he is.