Finally someone has stepped forward with a handy book that helps parents of children on the autistic spectrum organize their complex lives. Jen Merheb has created A Day at a Time: A Journal for Parents of Children with Autism, a 9x 5 spiral-bound book that serves as an all-in-one planner, resource book, medication tracker, and journal. No doubt this will become Resource Central for many parents — one place to record appointments, medications, and important addresses and phone numbers. What’s more, it is a daily journal, where parents can record their child’s behaviors and progress. Thoughtfully constructed, this notebook is so compact and durable (even the spiral binding is encased), it will likely endure miles of travel and the wear and tear as it’s pulled in and out of tote bags.
Anyone who has cared for an autism spectrum disorder child knows there are myriad therapist, school counselor, and specialist appointments to manage. Then there are the socialization and group therapy activities to schedule, and, if the parent is lucky, there are support groups to squeeze in. And to this full schedule therapists ask parents to record their child’s daily activities, reactions, and progress. It’s a long to-do list.
Having raised an autism spectrum disorder child, I can only wish that such a book had been available to me. Back then I turned the pages of my daybooks black with appointments written over other appointments, packed business cards into my wallet until the seams burst, and piled notes and reports on my desk in mind-numbing towers. Such a notebook would have been a blessing.
My favorite section is “All about Our Day” — the journal. Here Merheb provides a guide to what parents need to be observing and recording: Waking up, nap time, and going to bed; school time; play time, measuring progress, notes to doctor/therapist, making tomorrow better, and much more.
One might ask, is all of this microscopic study really necessary? Veronica Zysk, managing editor of Autism Asperger’s Digest Magazine, addresses this in her brief foreword:
As any parent of a child with autism or Asperger’s can testify, the experience is overwhelming. Any change, major or minor, in your child’s life can set off a tsunami of unexpected — and often unexplainable — behaviors. The store is out of his favorite brand of juice, he starts biting his play-date buddy, he lets out an ear-piercing scream every time you pull up in front of cousin Margie’s house. Please … can anyone tell us why?
Parents take on the role of detective — tracking, observing, recording, and analyzing their child’s behavior. As patterns emerge, insights emerge, Zysk says:
With microscopic precision, we observe the fine points: time of day, day of week, the weather, the color or pattern of a dress, the scent of someone’s shampoo, the hum or overhead fluorescent lights. We puzzle over what happened ‘just before’ or what is ever so slightly different today, always and in all ways searching for clues that help us better know our child. Our minds become overloaded with the millions of details we take in.
Yet what makes this book so appealing — its compactness and comprehensiveness — also becomes its drawback. More pages are needed. Parents can only record 46 days in their child’s life — that’s just a month and a half of journaling, which the book implies should be done every day. Granted, not everyone can or will journal so frequently. Still, any parent who interacts with two or three teachers, several counselors and therapists, plus a couple of doctors, should make at least two to three entries per week. At this pace, a parent would fill the book in four or five months. It’s affordable enough, at $14.95, for a parent to buy another book; however, that would mean filling out the resource sections (medications and contacts) again, wasting valuable time.
The appointment section, like the journal, is also too brief. It has room for only a dozen appointments, which I would have filled up in a month. I wonder if a slight redesign — a loose-leaf bound book with packets of replacement pages — might serve readers better.
Still, the overall concept and simplicity is commendable — an attempt to help parents organize and gain greater insight into a child’s mind, which curiously baffles and inspires. Parents who can adapt this book or set up a system based upon it will find tremendous gains.
“A child is one of life’s greatest miracles,” writes Zysk. “A child with an autism spectrum disorder can be one of life’s greatest mysteries. This journal, used on a regular basis, will help you always find the miracle within the mystery.”
A Day at a Time: A Journal for Parents of Children with Autism
By Jen Merheb
Sterling: April 2010
Hardcover, 128 pages