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.”

 

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

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.

Some people handle life’s quirks with resiliency and some don’t

I was talking to a high school classmate the other day and the subject turned to people from high school who have thrived and those who haven’t.

I will never forget the high school counselor who, in a conversation about my daughter, told my late wife Jean, “Mrs. McGuire, High School has NOTHING to do with real life.” Absolutely true but sometimes life seems so arbitrary about who excels and who doesn’t.

Navigating the challenges of adulthood looks different to every person and academic intelligence or high school success isn’t always a good indicator.

Surviving high school is usually about wearing, saying and doing the right thing and academic success usually goes to the students who do what they are told, when they are told and how they are told.

That’s not the way real life works. Real life depends on performance, savvy, self-starting ambition and compassion.

I occasionally meet young people who are so self-absorbed it is actually mind boggling. They really do believe the world revolves around them and are stunned when you don’t agree with their assessment.

Let’s face it, “me” is the organizing principle for all of us. Yet, most people who make life work for them understand that there is an interdependence among all of us that prompts us to be kind, thoughtful and accommodating.

So many of the folks who can’t “handle life’s quirks” are people who see their frame and lens as the only possible lens from which to view life. When things don’t go their way, they get angry, sad, frustrated and often just surrender. I guess the word I am searching for is resilience. The people who make life work for them have that special gift that allows them to bounce back from adversity called resilience.

I hope that when you order your copy of Some People Even Take Them Home: A Disabled Dad, A Down syndrome Son and our Journey to Acceptance you will find a story of resilience. Obstacles rise up in front of all of us but resiliency separates us.

If only Jason could speak clearly

I have become convinced that most families with a special challenge convince themselves that if one thing were different all would be a bowl of cherries. No matter how sanguine we get about our obstacles, no matter how much we persuade ourselves we can deal with them, we harbor a deep belief that one thing could change the ballgame.

For us, we always believed that if only Jason, our Down Syndrome son, could speak more clearly his life and ours would be exponentially better. With a normal child you can sit down to explore feelings, frustrations and moods. Hundreds of times we wanted to shout, “Please just tell us what you’re thinking!”

Body language, sentence fragments, intricate mimes and dramatic expressions were Jason’s communication currency. Jason’s true feelings and insights have always been imprisoned by his failure to adequately communicate. It is obvious much great wisdom and insight is crushed by his inability to speak clearly.

There was no stunning moment of clarity when we realized Jason would not be a verbal Down syndrome child. It was probably our earliest jealousy. We accepted the Down syndrome reality, but when other DS kids showed verbal potential we knew our verbal sled was in much deeper snow. Jason often woke us with his babbling in bed and we held out hope that someday intelligible words would rise from those scrambled sounds.

By the time he was four it was clear he desperately wanted to communicate. His frustration was undisguised because he thought he was talking just as we were. The key to appreciating Jason’s verbal abilities is to understand that he really believes he’s saying words just like you are. He used to get very angry when I would correct him on the pronunciation of a word such as taco. He repeated distinctly and carefully, as if I were a particularly slow guy, Caco! “No, Jason, its Taco. He spit back, “I said Caco!” Oh.

We’ve never understood that speech difficulty. I don’t know if his brain hears the word correctly and his tongue simply can’t pronounce it, or if there’s a broken synapse somewhere between the brain and his tongue. Whatever it is, that inability to communicate clearly has shaped who Jason is and who we are. I truly believe that he has a special, though disabled mind. If he could speak more clearly his life would be fundamentally different.

But then you accept him for what he is and gratitude wins the day.

 

 

Taken from the upcoming book, Some people Even Take Them Home A disabled dad, a Down syndrome son and our journey to acceptance