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.”

 

Relaunch of my blog and answering the question, why do it?

Anti-climax has its place I suppose. This post was originally going to serve as my reentry into the blogosphere. News events prompted me to change that plan with a well-received blog post about Meryl Streep and Donald Trump.

Before that, I last posted a regular blog entry in mid-May as I retired from the Walter Cronkite School at Arizona State University.

I promised in that last post that during a planned hiatus, I would decide if I was going to continue the blog and exactly what form it would take if I did continue. I also needed to sort out why and whether I might continue.

This blog was born as McGuire on Life, Disability and Grief in August of 2014 out of three needs. A) I needed a broader canvas for my thoughts and feelings than my blog McGuire on Media offered me. B) I wanted a forum on disability to discuss my book, “Some People Even Take Them Home.” C) I needed to bare my soul about my grief after my late wife, Jean Fannin McGuire died in June of 2014.

My hope was that my personal experiences might offer comfort at the same time I provoked people to think deeply about grief and disability. I am convinced personal stories intrigue, stimulate and educate.

Contemplating the relaunch of the blog forced me to confront why I should do it. The truth is writing the blog on any kind of a regular schedule is perilously close to work and I just retired from that practice.

Rumination led me to realize that writing is not really work for me. It’s how I think. I add flesh and blood to all the weird ramblings in my head by writing. I need to write.

I also need to touch people. Few things make me as happy as the realization that my writing touched someone. My book, “Some People Even Take Them Home”  did not sell near as many copies as I’d like. Yet, writing that book is one of the most satisfying experiences of my life. I know it affected some people profoundly. For a writer, all you really need is to affect one person.

I admit to a deep desire to encourage people to think through issues and prompt them see things in a new light. I completely understand my opinions are my  opinions and I am wrong a lot. Writing on a public blog allows the give and take from an audience that will make you painfully aware of your errors in judgment and will applaud your successes.

So that’s why I am relaunching the blog. I changed the name to McGuire on Life so that all the old subjects are fair game, but I can also broaden my canvas to include travel, retirement and the people I meet on those new adventures.

I am still disabled. I still have a disabled son. I still think a lot about illness and grief even though I have found a delightful new love. Those topics will remain a part of this blog.

After I retired, I needed new business cards. My new card says Tim J. McGuire, Life Enthusiast.

At root, that is who I am.  To the frequent consternation of the two women I have lived with, I wake up every morning bubbling and happy and usually stay that way all day.

We are at the point in American history where too many people are  struggling to be enthusiastic about their spirituality, their politics and their futures. I don’t propose a Pollyanna approach. If I were to redo those business cards I might make it  “Realistic Life Enthusiast.”

I hope you will find that describes these blog posts.

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.