Amy Silverman’s “My Heart Can’t Even Believe It” is a very special book.

When I read My Heart Can’t Even Believe It, A Story of Science, Love and Down Syndrome by Amy Silverman, it was the first hard copy book I had read in at least two years. My commitment to reading books on Kindle cost me several months of insight and understanding I would have gained from this special book.

Amy Silverman has written the book every family member, teacher or school administrator who knows a child with Down syndrome must read. I gave a copy to my daughter, a middle school special education teacher more as a work assignment than as a present. The book, is flat out, the best documentary I have ever read on how Down syndrome affects a family.

Yet, the powerful, captivating book is so much more than that. It is a carefully researched book, but that research is always done in the context of a search for a better life for the author’s daughter born with Down syndrome, Sophie, and other family members.

I have never seen the interactions with a school system, the search for  a link with Alzheimer’s Disease and Down syndrome, or the ethics of searching for a “magic pill” to fix Down syndrome explored with this kind of intensity and effectiveness.  This book is both intellectual and passionately heartfelt by a loving mother. That is one difficult trick.

Amy Silverman has grit. I know her quite well and she takes no prisoners. The book carries an “attitude” and the F-word can be jarring, although effective. It also reveals a mom who hurts, cries and hopes impossible dreams. One would do this book a disservice by calling it a memoir. It is too well-researched and educational for that moniker. It is more a passionate first-person study of the intersection between heartbreaking experience and tough-as-nails journalism. And the damn thing can be funny. For example, Amy’s dogged pursuit of why people with Down syndrome don’t have curly hair pops up throughout the book and had me laughing amid my tears.

Let me address the elephant in the metaphorical room. In December of 2014  I juxtaposed my own physical disability with my son Jason’s experiences with Down syndrome in what was clearly a memoir called Some People Even Take Them Home. The two books are as different as a whale and a lion. Oh sure, they are both about parents coping with children with Down syndrome. Both parents fall on the smart-ass side of the scale and both parents are straight ahead people when it comes to coping with challenges. But that’s about it for similarities.

The biggest difference in the two books  is about 22 IQ points–the difference between Sophie’s higher IQ and Jason’s. That means a whole different set of challenges socially, educationally and in expectations. Sophie can read. Jason can’t. Sophie can be mainstreamed and Jason never achieved that.  Those key differences make Sophie’s life far richer, but much more complicated, even messy. Amy had to navigate school issues, drama class exclusion and segregated cheerleading in ways I never did. It is in her tales of exactly those kind of day-to-day problems that the richness of Amy’s book emerges.

The other clear difference in the book is that while I chose the 50,ooo foot memory approach, Amy chose to buttress many of her experiences with solid research. Her research is outstanding. Throughout the book I found my self saying, “Really?  I didn’t know that.” The most profound discovery Amy led me to is an incredibly disturbing one. She explores the links between Down syndrome and Alzheimer’s in ways I have not previously understood. If her numbers are correct we have much to worry about the future of our Down syndrome children. Jason is probably not going to be happy with the way I scrutinize his memory and other actions from this day forward.

I am sorry I delayed reading Amy’s tremendous book, but now the least I can do is heartily, unconditionally recommend it to others.  This is one damn important book.

 

Tim J. McGuire is the author of “Some People Even Take Them Home.”

 

Suddenly my son’s health seems like a big deal

There is a short passage in “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance about the day after my son, Jason, was born with Down syndrome. The staff pediatrician at the hospital was discussing the diagnosis with us. I wrote this:

He (the doctor) actually began the conversation with good news, but his delivery rankled more than it comforted. He had ordered an x-ray which revealed Jason’s esophagus was connected to his stomach. That’s not always the case with Down syndrome children. And, as far as the pediatrician could tell there were no heart problems, which is the other huge risk factor for Down’s babies. Jason was perfectly healthy except for that pesky mental retardation,(1979 term.) That blessing of good health didn’t impress us much that morning, but we have thanked God for Jason’s exceptionally good health practically every day since.

Jason has been incredibly healthy as a child and now as  an adult. He has been so healthy I am afraid I took that good health for granted.

Jason fell on the Minnesota ice and snow a few weeks before Christmas. When we visited during the holiday he complained that his back was hurting. So last week he visited his doctor.

His house manager wrote me after the appointment and said, “Jason was seen last night by his primary physician for his lower and mid back pain. He had three x-rays taken. The doctor stated that his bones were close together, but nothing that would require surgery. He suggested using ice as needed for pain and rest.”

On the face of that note Jason is fine. There is nothing to worry about. But I did and I do.

The words that leaped off the page for me were, “but nothing that would require surgery.” I had never come close to imagining Jason undergoing back surgery. In truth, I have more or less lost sight of the fact that Jason is aging and that he is going to have to deal with all of the things associated with that process.

Selfishly I think about how disruptive a major Jason illness or surgery would be for my family, but once I get past that I am frightened to death about how Jason would deal with a debilitating illness.

I am afraid that sort of experience would be overwhelming for him and that makes my stomach churn.

I can’t protect Jason from bad health any more than I can protect my other children, but in my mind they are adults and Jason is an innocent boy who needs my care and attention.

I am convinced Jason’s back will be fine, but this little scare has been valuable. It’s focused me on Jason’s vulnerability and caused me to think about some important contingencies around his future care.

And, I won’t take his good health for granted ever again.

The mystery of Jason–5 and 35 at the same time

One of the main themes of my book Some People Even Take Them Home,” A Disabled Dad, A Down syndrome Son and Our Journey to Acceptance is that my Down syndrome son, Jason, is five years-old and 35 at the same time.

Sometimes he is a scared, befuddled and overwhelmed child and at other times Jason is a man of the world with wise insight largely fueled by television and movies. When he visited Arizona along with his siblings over Christmas the five-year-old was on full display.

Within minutes of arriving, Jason arranged the five stuffed toys he brought from his group home in single file on his bed against the wall. He does so unabashedly but please do not call the toys dolls or toys. That insults the 35 year-old Jason who maintains a self image of an adult.

The adult Jason expects the privileges of an adult, but is absolutely stunned when you are unhappy that he has mixed his clean underwear with dirty underwear. A five-year-old just can’t see why such niceties matter.

On his trip his siblings got a delicious look at Jason’s self image. As we discussed the book somebody brought up the far-fetched notion of a movie about the book. When Jason’s younger brother, Jeff, asked who Jason wanted to play him in the movie, Jason never paused. “The Rock,” he declared with no hint of irony.

The Rock, or Dwayne Johnson, is a muscled wrestler and actor who was once a defensive tackle in football. The similarity between Jason and The Rock go no further than the fact they are both males. That does not faze Jason in the least because a five-year-old wants what a five-year-old wants.

Logic and realism come to us as we grow older, as we mature and as we gradually come top grips with what we are and what we are not. Jason has never been able to make that journey. He is sweetly funny about his state, but his lack of recognition is bitterly disappointing and frustrating too.

That is the debilitating reality of a cognitive disability.