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.”

 

I think I figured out a new definition of love

I was driving down the highway when I think I realized my own personal definition of love. I will be 67 years old in a week or so, but I don’t think my discovery has come too late.

As I drove, I thought of my bride of six months, Candace. And, I smiled. It was the kind of smile that started at my mouth, occupied my entire mind and then made my insides all gooey. It was a smile of gratitude, a smile of comfort. I was consumed by that smile of love. I suddenly wanted to write a love letter to her. I guess this is it.

Passion is great, affection with a great big hug rewards the heart, and concern and care are certainly essential elements of love. But in that flash, I realized that real love brings with it that satisfied, contented and all-absorbing smile. And, I happily realized that smile of love has been a constant in my life.

As I reflected, I realized that smile was always the greatest sign that my late wife Jean and I had something special too. I was able to recall great feelings of satisfaction that were always marked by that smile that grabbed my soul. Even when she is gone I get consumed by that great big smile of love. It happened last weekend when I saw something in our old neighborhood that would have amazed and tickled her. That great big smile of love captivated me.

My kids induce that big, all-encompassing smile. Incredible emotional connections with my daughter, Tracy, warm me with that sort of smile and so do the incredible bouts of repartee I have with my son, Jeff. And the simple thought of my son Jason, who has Down syndrome, grips me with a smile that envelops my entire being. Then there are my two delightful grandchildren, Collin and Kayley. I smile so much when I think of them that I fairly burst. That’s the gooey kind of love.

I sometimes think people look in all the wrong places and for all the wrong emotions for love. I always feel sorry for the young couples who seem to think they are going to hear bells or giant gongs when they fall in love. There are no bells.

Happiness comes when we bask in the comfort, content and satisfaction of loving and being loved. When we find that sweet spot, a great big smile seizes our soul and carries us off to a special place worth celebrating.

Tim McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

 

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 small-mindedness of people continues to amaze me

My Down syndrome son Jason was not mainstreamed in high school, but we did all we could to make his high school experience as “normal” as possible. He was mainstreamed in religion classes where he met a lot of the boys he encountered in high school. His mother and my late wife, Jean, always encouraged Jason to “high-five” his friends rather than hug them to make him like the other guys. In that same quest to make him “like the other guys,” we also bought him a high school Varsity jacket so he could be “cool.”

The jacket had his name, his graduation year, 1999 on the sleeve and the school’s mascot name on the back. I vaguely remember there was some discussion about getting Jason a letter but we decided the jacket was plenty and he hadn’t really earned a letter. But, I will tell you that my attitude would have changed it somebody had said Jason could not wear a letter because somebody else said so.

I have been having an ongoing discussion recently with a close friend about her contention that most people are basically good if you give them a chance. I desperately want to believe that, but I am too often encountering people who shock me with their smallness and meanness.

The cause of my most recent ire is this story out of Wichita. A Wichita woman is telling news media that the high school principal ordered her Down syndrome son to remove the Varsity letter sports letter from his sports jacket. The principal without appropriate shame confirms that his teachers told the mother they did not want the boy wearing a letter he did not earn. The mother claims the action was instigated by another parent of a varsity athlete. This is the dictionary definition of small and mean.

What in our society has led people to think that telling the Down syndrome boy not to wear his letter because he didn’t earn it, is a good idea? Was nobody around to say, “you know this is really dumb and a lot of people are going to hate us for this?” It appears shame has taken a powder. Apparently people are just not concerned these days about appearing small and mean. One would hate to think that selfishness has become so dominant in our society that people can’t see beyond their own interests.

I sort of get the fact that letters should be earned, that was my instinct 16 years ago. However, I bemoan the lack of empathy in our society that does not allow people to cut a Down syndrome high school boy a little slack. Who really gets harmed if special education students are allowed to wear letters? And don’t tell me that if you allow one non-athlete to wear a letter then everybody should be able to wear one. That is antiquated everybody-has-to-be-equal thinking that is simply the work of narrow minds.

Can’t we all just lighten up and get along?

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

Media interviews force me to articulate new ideas about Jason

Perhaps surprisingly, doing media interviews for my book, Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance usually leads me to new thoughts and ideas.

I found the interviewer for this piece published last week, particularly insightful. She wondered what I would tell people who were considering whether to keep a Down syndrome child. That is an incredibly personal decision and I could not presume to understand another persons issues, values and needs.

I did tell the reporter that I was profoundly uncomfortable when people used the argument that “Down syndrome people are so cute and lovable.” I told her I found that profoundly derogatory.

As I reflected on the question, I think I articulated a much larger truth. Jason has, without question, made the world a better place.

Now, I cannot say that was a new discovery. In fact, it is a major theme of the book. But the universality of that struck me as I talked to the reporter.

The meaning of life is way too big a subject for this modest blog, but I think most of us hunger to, in some small or big way, leave the world a better place. I find it a primal drive. Most of us want to do something that improves people or things in this raggedy world.

Jason could never articulate that for himself. But, in fact, in thousands of ways, big and small, Jason makes the world better every day.

His smile can change a room. His silly jokes warm hearts. His care and concern for others are sweet examples of what loving our neighbor really should mean. I tell countless stories in the book about how he has affected scores of people.

All the lives he has touched in his 35 years constitute a legacy many of us would be extremely proud to call our own. I shudder to think of the laughs, smiles and kindnesses that would be missing from so many lives if Jason wasn’t drawing breath. The world is indeed a better place because Jason walks among us. And, my world is immeasurably better.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance