Friday, April 12, 2013

Autism Awareness Month 4/12 - Joseph - Family

Dr. Joseph T Capell is my father, and Jack's grandfather. I have sung his praises in these pages before (here). This post is special to the autism awareness month project because it brings three new perspectives to our posts: 1) This is Jack's Grandfather 2) This is my father 3) Joseph T. Capell is a prominent Pediatric Physical Medicine and Rehabilitation physician. 

Many years ago, I remember my wife asking my father why he chose the field he did. His answer was wonderful. "Most doctors only get to see kids when they're sick, or need an operation, and then they move on. I get to see youngsters with physical disabilities all the way to adulthood, and sometimes beyond. They are with me forever." 

I cannot think of enough kind words to say about my father and, likewise, how lucky we are to have this post in our Autism Awareness Month project. So, I'll introduce him as thus...

Ladies and Gentlemen, it is my extreme pleasure and honor to present the man I still daily aspire to be... My Daddy, Dr. Joseph T Capell...

First let me tell you who I am. I am Jordan’s Father, Jack’s Grandfather and Babs' husband. There are other important relationships that define my existence, but these are some of the most important.

I am also a physician and specialist in treating physically handicapped kids. The specialty is called Physical Medicine and Rehabilitation as well as Pediatrics and I see kids and their families with disabilities like cerebral palsy, amputations, learning disabilities and mental impairment. Ordinarily, I don’t see kids with ASD unless they have some physical problem that requires a brace, a wheelchair, physical occupational or speech therapy or something of that order. I do know about ASD, though from my training and experience.

Jack was our first grandson. We already had two granddaughters so my wife and I were not newcomers to this business, but Jack was the first boy and so we did not have a good standard with which to compare him as a grandson.

My greatest embarrassment is that I did not see it coming. In looking back, many of the signs were there, the delay in speaking, the passionate devotion to order and organizing, and the often inappropriate use of toys. We saw the toe walking too. We thought that telling our son and daughter in law to discuss our concerns with the pediatrician would be sufficient and grew increasingly alarmed when we heard that, “everything was fine,” because we knew it wasn’t.

I think my wife will guest blog for you about the time we learned Jack’s diagnosis of Autism Spectrum Disorder. Both Jordan and Julie, his parents already have too, so I will not say much about my experience with that, except to say that the sadness was mostly for my son and daughter in law because we had raised a disabled child already, Jack's Uncle Ro, we knew what a long, tough road lay ahead for them.

What I did want to write about was the first regression that little Jack had. He actually was diagnosed pretty early and got into services soon after his third birthday. He did well and looked like things would move along, if not remarkably well, at least reasonably well. He was in a general ed Kindergarten with an aide and had amazing success. Then came the summer before his first grade, and that first semester of first grade, and things went terribly. I remember talking with his father, Jordan, on a long drive somewhere and heard how discouraged he was about Jack seeming to lose everything they had gained in two hard years of treatment. They were even considering medications, which was “a bitter pill for both parents to swallow” so to speak. That bespoke desperation and I knew it. I think the best advice I could give at that moment, and I had precious little to give, was that the mark of how well you are doing with your child is not *if* regressions occur, they will inevitably, but how you handle them. That is, how you react, how you think about them, get assistance, regroup and plough on. That is the test of parenting a child with a disability. I think they heard me. Jack got an evaluation by a psychiatrist, frequent planning sessions with the school team, a modification in his behavioral therapy and innumerable other things that seem for the moment (and I am crossing my fingers as I write this) to be helping and allowing Jack to re enter his class with his NT peers.

The other thing that being Jack’s grandfather has meant for me, has been a huge lesson in humility. I see first hand the courage and dedication in the face of immense obstacles by my son and daughter in law. Before I had kids, as a pediatrician, I saw mothers and fathers bring in their child with a low fever, not eating, irritable, inconsolable and sleeping poorly. After ruling out the other conditions that I knew how to treat, it often came down to “just teething”. I would say it like that, because there was not much I could offer to help besides the things Grandmother had already recommended. That never was very comforting, I am sure. Then we  had kids and I stayed up all night with crying that never seemed to stop, I understood how disconcerting such a problem was for young parents.

Now I can say pretty much the same things about young families with an ASD child. I know. I have witnessed it in my own family and shared the shock, the anger, the discouragement and the sense of pushing the rock up the hill only to have it roll back again on top of you that living with and parenting brings. I also have witnessed close up, the triumphs and satisfaction when even small victories like finally getting potty training accomplished, or overhearing your child have a *real* conversation with a peer can be.

Finally, let me say that I am honored to be a grandfather of this remarkable young man and wouldn’t trade it for the world.

I am likewise honored to be Jordan’s father and Julie’s father in law and pleased that they have asked me to write this article if it will help any other grandparents who are out there wondering how they can help. 

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