David and Susan Axelrod: Even the White House knows special needs. While away for six days with my husband, I watched Piers Morgan on CNN interview David Axelrod, President Obama’s former senior advisor and primary campaign strategist. David and his wife Susan Landau are parents of a “special needs” daughter, now in her late twenties, with a history of severe epilepsy. In the interview, the Axelrods told the story of their daughter’s onset of seizures, at seven months of age. She continued to have multiple seizures daily as they desperately searched for a treatment that would put a stop to the assault on their daughter’s brain and on their lives.
24 Drug Trials: If my memory serves me, they reported that it took 24 different drug trials until they found a drug that put a halt to the “terrorism of the brain” as David Axelrod eloquently and sadly named the horrific, unpredictable electrical assaults that, like terrorist attacks, swoop down on the innocent with tragic results. Mrs. Axelrod, not long after her daughter’s diagnosis, founded CURE, Citizens United For A Cure For Epilepsy. I believe that their daughter Lauren was age 18 when they finally found a treatment to halt these assaults. Even so, they are clear that at any moment that drug could fail her and unleash another round of devastating attacks.
The Same Stuff: You cannot move amongst special needs families without encountering many who are faced with the devastating impact of a seizure disorder on their child with its ensuing devastation to the brain’s development. Though our daughter does not have a seizure disorder, as early as preschool she has witnessed seizures of classmates and dorm mates and as recently as a few months ago, whilst in her own home, a new friend had a seizure while the girls were watching a movie together. But I was startled to see David Axelrod, a man I associated with political expertise and power, and his wife Susan, relay a tale so familiar to those of us who move in the special needs hemisphere. They describe in the simplest of terms how their daughter’s disorder took over family life, impacted the other siblings, and redirected Susan Landau’s life overnight. There was simple honesty, and the usual desperation and determination in their story, that I have found amongst all the families of special needs children with whom I have met in the years since our family entered that arena, almost two decades ago.
Intelligence, Resources, Passion and Love Create A Powerful Potion: There are many families such as the Axelrods whose fight for their child serves others. Much of what benefits our daughter rose out of the private sector where families grouped together to found DATHAR, now Ability Beyond Disability, her service agency, or SPHERE, a theater and arts group for special needs. Our daughter’s school, Riverview, has many such families whose hard work and foresight has strengthened this amazing school.
Update: On the family front, I visited our daughter one day prior to our trip last week, and as soon as I saw her face, I knew, “she has a sinus infection.” Though she is feeling the pressures of change upon her, nothing flips the apple cart over like an illness. With a little Zithromax and less rain, by the time we see her next Tuesday for the first of her two graduations, this one from Cape Cod Community College’s Project Forward, she will have returned to pondering the ever elusive question, “what do I want for graduation?”
Fingers crossed, that is.
©Jill Edelman, M.S.W., L.C.S.W. 2011