story of a family with autismThere are books written about families, and there are books written about Autism, and in “Ketchup is My Favorite Vegetable,” author Liane Kupferberg Carter seamlessly weaves the two together to create a beautiful and heart-tugging story that will stay with you for a long time. In its purest sense, this is a love story—about two parents and the love they share for each other and for their sons, one of whom has Autism.

There are many similarities between Liane and myself, we are both native New Yorkers in our fifties, Jewish mothers of two boys who are roughly the same ages, and we both have a ferocious love for our families. A major difference is that I do not have a son who has Autism, and Liane does. My parenting skills were never questioned (other than by myself) and I have never been at the mercy of self-proclaimed “experts,”  charlatans, and clinicians who felt they knew more about raising my boys than I did. As I read the book, I initially felt extreme sadness for the Carters, and guilty. Guilty because reading Liane’s story about a family affected by Autism, as a parent who never had to deal with that kind of heartbreak, I also felt relief.

Reading the book took me back to an incident that happened many years ago when my oldest son was around eighteen months old. He began to roll his eyes to the back of his head whenever he did not like what we were serving for dinner. As a first-time mom, I panicked, and at the recommendation of our pediatrician, we brought him to a pediatric neurologist.  As I sat in the waiting room with my son on my lap, I noticed that many of the other children there needed assistance or were in wheelchairs that had battery packs stowed in a basket beneath them. I have a tendency to expect the worst, so of course that was what I did, especially because it involved my child. I looked around the room and I envisioned myself eventually pushing my son in a wheelchair or worse. I silently told myself that what I was looking at was my future, and I made sure not to make eye contact with my husband, because I knew he knew that was what I was thinking.

After meeting with the doctor and having him do some tests and an EEG, he turned to me and said, “Mrs. Trotta, what you have is a very willful little boy.” With that, we exhaled loudly, got up and left, and took our healthy, but “willful” little boy home.

There is not much more that can force a mother’s heart to virtually beat outside its body than hearing a doctor say there is something wrong with her child, and the author was told this not only by medical practitioners, but also by educators, psychologists, therapists, and myriad others weighing in on the diagnosis of her son Mickey. I was awed by her stamina and sheer strength to keep going and searching for better answers and better treatment for her son, all the while questioning my own fortitude.

While trying to maintain some semblance of normalcy in their lives for Mickey and his older brother Jonathan, the Carters tirelessly navigate into and out of “business” and “family” mode. There are trips to neurologists and specialists, and meetings with teachers and school boards. Many lessons are learned here about how parents need to be advocates for their children regardless of the magnitude of any difficulties they may have, and the Carters prove how, as unlikely as it may seem, policies and programs can be changed if someone is determined and stubborn enough to get them to change.

The book is not all strang and durm; this extremely well-written memoir draws the reader in on a two-decade journey down the rabbit hole of Autism with very little of the melodrama I had expected to encounter in a book such as this. The many disappointments and heartaches are balanced with humorous vignettes and by the end of the book, we feel as though we’ve been watching the family learn and grow through a window. Mickey is a charming and sensitive boy and there are many tales of his successes and achievements as he heads into adulthood, and we are privy to blessed events like Bar Mitzvahs and graduations. I found myself crying with the Carters out of compassion and sheer frustration at each roadblock they encountered and cheering for Mickey as he pressed on and hit his goals.

Aside from the novel-like feel to this book, there is much to be learned here about Autism and how to manage with a child who is not considered “normal.”  It’s all here, the clinical (and resources), the happiness, the sadness, and even the anger, and that’s what makes this a must-read for all parents everywhere.

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