Bumping Down the Road Less Traveled

Author:  BeenThereMom-Parent to an adult son on the autism spectrum

Nowadays, it seems that autism is being diagnosed in children much earlier than was the case when my son, Jack, was born 34 years ago.  We didn’t have the advantage of knowing that he was on the autism spectrum until he was nearly a teenager.  Had we known, perhaps he could have had the benefit of more specialized programs and treatments.  He had the added complication of suffering brain damage at birth, so perhaps it would have been hard to know for sure that autism was a factor, anyway.  In any case, we knew from early on that socialization was a particular challenge for him, as it is to this day.

One of the biggest obstacles to understanding what was going on with Jack was, first of all, our not knowing where to go for help.  No medical doctor had diagnosed him with anything, but we knew, as time went on, that he wasn’t meeting some of the childhood developmental milestones.  We had him screened at 13 months of age because he wasn’t even pulling himself up on furniture, let alone trying to walk. I didn’t know until someone my husband worked with, who also had a special needs child in another state, told him that we should get a social worker assigned to him through the county in which we lived.  That was the first step to ensuring that he would receive the services he needed as time went on.  There was no “manual” on how to find resources, how to know if you even needed them or if they were available.  I remember being at a meeting for parents of developmentally disabled young adults and one woman there had a 21-year-old son who was becoming so violent while living in their home that she was desperate to get him into foster care of some type, yet she had only recently gotten him on the waiting list for services so it was not going to be an easy task.  I’m sure she didn’t even know that he should have been receiving services years before this point.

I think the goal most of us have for our special needs kids is to be able to live as independently as possible.  It was sometimes very difficult to imagine my son being able to have any kind of life on his own, but I will be writing more about our journey to independence, through many challenges and trials, hope and despair, as well as through the frustrations of “the system” and the dedication of various social service and mental health professionals.  Some of this journey involved letting go of our huge wish to protect him at all times, to keep him safe.  We had to understand that a bird that is forced to stay in a cage can never fly.