Welcome to Being Asa

A father's perspective on raising a special needs child

Welcome to my first post about life as the father of a special needs boy. We call him Asa. You will learn a lot about him and me over the coming months.

I will write quite a bit more about my thoughts than his. I can guess what he is feeling, thinking, experiencing, but I do not know. You see, Asa does not talk. He barely communicates at all. He understands very little. Much of what he is able to do is still so far behind the capabilities of most children turning five.

That sounds bleak. But see him here. See how happy he can be. Our hope is that his life and our lives have many more joyful moments like the one in this photo. The reality is those moments are overshadowed by our hours of frustration, fear and desperation.

Phelan-McDermid Syndrome

The majority of people with Phelan-McDermid Syndrome (only 2,255 worldwide) will never live independently and face significant learning challenges. Regressions are common: skills such as speech, reading and writing are gained and then lost and sometimes never found again. This can happen at any age. There is no cure. The syndrome presents a range of symptoms and co-morbid conditions, including but not limited to intellectual disability, communication disorder, epilepsy, autism, sleep disorder, gastrointestinal issues, lymphedema and on and on and on.

The Vision

The purpose of this newsletter is to have the reader take this journey with us, to dive deeper not only to educate and inform, but to experience.

In future posts, I plan to explore the following:

  • Asa’s condition and its effect on his life, the lives of his parents, two older brothers and extended family and friends.

  • His mother’s heroic advocacy on his behalf in her battles against medical and insurance companies. Unfortunately, her fierce intellect and incredible resourcefulness yield only mild results due to an unrelenting health care bureaucracy that has forgotten its purpose. I will also consider how terrible these same challenges must be for families who don't enjoy certain advantages we do.

  • A full detailing of the ridiculous health care system that plagues our country.

  • The lessons we’ve learned, the personal growth we’ve experienced, the hope we have and the tremendous people in his life, including his therapists and neurologist, along with many others.

  • The day-to-day trauma of taking care of a special needs child and how this dramatic event in our lives has opened our hearts and minds in a positive way. And our realization that we did not see or did not want to see people like Asa before he came into our lives.

  • The complex policy questions that arise in determining the role of government and society in providing services for intellectually disabled people from a sometimes atypical perspective for parents of a special needs child.

And likely, much, much more.