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.

Jason, the remarkable gift that keeps on giving

A million thoughts flooded my brain Saturday as I married the lovely and charming Candace Medd Hadley. I will probably discuss many of them in future posts, but my son with Down syndrome, Jason McGuire, took a big share of those thoughts.

Jason was his ebullient self throughout the day, though he was particularly worried about the one task I assigned him. Jason was in charge of handing the wedding rings to the priest. His incredibly loving siblings, Tracy and Jeff, were as concerned as Jason was about his job so they took him to the church basement and practiced. Jason executed the exchange several times to his brother and sister so he was ready when the time came.

Here are the words of his job coach at his workplace: “Jason  was very chatty about it all and said his favorite part was holding the rings! He showed me step by step what his job was and said he didn’t drop the rings or get them stuck on his finger. He said it was good they didn’t get stuck otherwise he would have had to marry his step mom! He had such a great time and he is so happy.”

Oh, what a mess that would have been if he would have had to marry his step-mom. There is a country song in that to be sure. That logic is typical of Jason. He believes that you wear seat belts to prevent an accident. I remember his mom, my late wife Jean and I were once walking through the underground metro in Paris. We were very confused because we only understood a very little bit of French. In our befuddlement, Jean observed, “this is how Jason goes through life, with a little bit of a clue, but never completely understanding.”

That phenomenon was in full effect at the wedding reception Saturday. As a close friend of mine put it, “he held court like no other.”  Yet, when his brother wanted Jason to join him for a toast he hated to be pulled away from his wedding cake. There must be priorities and a toast versus more cake didn’t seem close to Jason.

As I watched, and now reflect on Jason’s delightful antics and the way he endears himself to everyone he meets, I also reflect on a piece of state legislation in Ohio. Abortion opponents are pushing Ohio to make it illegal for a doctor to perform an abortion if a woman is terminating her pregnancy to avoid having a baby with Down syndrome. I find the proposed legislation an incredible invasion of privacy and an infringement of civil liberties and generally repugnant. Yet, as I write in my book “Some People Even Take Them Home,” “I can say unequivocally that I believe our world would be an inferior place if there were no Down syndrome children. The pursuit of the perfect baby would deprive our world of real joys and triumphs. I hope the optimism that is inherent in this book may provide intellectual and emotional fuel for making those life-changing decisions.”

I don’t wish Down syndrome on a child or parent but last Saturday my overpowering thought was how awful it would be if there wasn’t a Jason at that wedding to touch people’s hearts. His sweet cluelessness and deep kindness makes us all special people.

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

Fortitude comes from laughter and perspective

St. Joseph’s New Hope, my home Catholic parish in Minnesota, hosted a book reading and signing this summer for my book, Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance.

The event was my favorite book event so far. More than a 100 old friends, new acquaintances and the just curious turned out to hear me read and explain passages from the book. Just like the book, there was laughter, plenty of tears and, I hope, some wisdom. There were also questions. Some of those were probing and provocative.

A mother of a severely cognitive delayed child, who had obviously had a difficult trial raising her son, rose to tell me her challenge and then asked, “Where do you get your fortitude?” Nobody had ever asked me that question before and I had no glib answer. I briefly thought about fortitude as a gift from the universe, but that felt like a cheap, unhelpful answer.

Uncertain of exactly where I was heading I told the searching woman, “It starts with laughter.” I think that is a key message in my book. You always have the choice to cry but that brings down you and everyone around you. When you laugh the world grows bigger. There is suddenly more space for courage, grit and affection.  Some people have commented that some of our family humor was rude. Walk in those shoes, baby, and I will show you rude. The dictionary defines humor as “a comic, absurd, or incongruous quality causing amusement.” Another definition says humors are “peculiar features; oddities; quirks.” Any parent of a developmentally delayed or developmentally disabled child will tell you there are more “peculiar features, oddities and quirks” in raising such a child than there are Minnesota mosquitoes. Those oddities can drive you insane with frustration or you can laugh at them and make them your friend. For me and my family that laughter was a critical source of any fortitude we managed.

Then my answer wavered just a bit until I suddenly got the courage to tell that small crowd that, for me, fortitude is all about how I choose to look at life. In a way that I had never expressed before I talked about attitude.

I asked the group to let me make an illustrative assumption about their day. I said “let’s say 10 things happened to you today. I dare say seven of those were very good things. Nice happy moments of minor triumphs and joys.” I went on. “I will also guess that about three things that happened today were bad–everything from a flat tire to an overly-critical boss to a minor slight by a friend.”

I then observed that the difference among most of us is the choice we make about what to focus on at the end of our day. Are we obsessed with the three bad things or do we find solace and victory in those seven good things?

For me, celebrating those seven nice moments gives me the strength or, if you will, the fortitude, to power past the tough challenges and truly enjoy this earthly journey.

Happily, the woman nodded in agreement.

What if there were a magic pill that cured Down syndrome?

A friend of mine here at the Walter Cronkite School at Arizona State University sent me this thought-provoking story about the deaf subculture. She is very smart and obviously saw the moral and ethical disability conundrums that are wrapped up in a frighteningly untidy ball here.

The story discusses the controversy and cultural issues raised by the increasing availability of cochlear implants which many in the deaf community fear will destroy the deaf subculture. The story points out that many deaf people are passionate about their culture and many are critical of people who choose hearing over living a soundless life with sign language.

I really can’t discuss that phenomenon because I am not deaf nor do I have a deaf family member. I can’t imagine being unable to hear the sounds of the earth and the workplace, but most of us can’t imagine dealing with a different disability.

Where the debate inevitably takes me is to Down syndrome. In my book,  Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance I write in the acknowledgements section of the book: “I have no intention of entering the hot button arena of abortion, but I can say unequivocally that I believe our world would be an inferior place if there were no Down syndrome children. The pursuit of the perfect baby would deprive our world of real joys and triumphs.”

Believing that aborting all children with Down syndrome is wrong and would diminish our society is a ridiculously easy place to stand. People with Down syndrome, like my 35-year-old son Jason, do deeply enrich our world just as deaf people do. I ardently believe all diversity makes our world richer and gives it genuine texture that can be celebrated.

But, for argument’s sake, let’s say there was a pill that immediately fixed Down syndrome. And, what if, like the cochlear implant, there was some chance it wouldn’t work. Would I hang on to my diversity argument or would I move mountains to get that pill for Jason to allow him a chance to live a more normal life?

Again, for me, I’d step all over people to get Jason that pill and the “Down syndrome culture” be damned. Certainly our society would lose something important, but how could I possibly deny Jason all the joys that come with normal intelligence?

One of the arguments of people who oppose cochlear implants is that it implies deaf people need to be fixed and they resent that. That argument bothers me because a lot of us have twisted limbs, cancer or a score of other maladies that get “fixed.”

I cannot walk in anybody else’s shoes and I don’t have a deep understanding of the deaf subculture or cochlear implants so I will never criticize anyone in that community, but if I could fix Jason’s Down syndrome with a pill you would see nothing but a blur.

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