Tuesday, September 13, 2011

ONE VOICE: Sept 2011

Wednesday September 7, 2011

Hope in the face of autism


To all despairing parents: Just hang in there, things do get better.

WHEN my son was diagnosed with moderate autism 14 years ago, my first mission was to talk to other parents who had trudged the path before me. Years later, that same feeling intensified when my son struggled through the pain and confusion of puberty, hauling the rest of the family along in trying to re-establish some form of sanity and peace. Both times, I felt ill-prepared and lost.

Had someone shown me the book, Parenting Across The Autism Spectrum – Unexpected Lessons We Have Learned by Ann Palmer and Maureen Morrell, it would have spared me many hours of despair and bolstered my confidence.

The authors, Palmer and Morrell, are mothers with Autism Spectrum Disorder (ASD) children who met through a parent support group in North Carolina. Their respective sons, Eric and Justin, are now both in their twenties. They are on opposite ends of the autism spectrum, living out their lives on completely different routes.

Eric, a quiet and passive boy, went through the mainstream school system and is now staying in a university dormitory.

Justin, described as a “whirlwind of activity and mood swings” is currently living in a residential farm community. These two wise and witty mums are now in what they call their “empty-nest time” and are sharing their stories, providing well-earned lessons.

This book is not about which intervention works, or how to teach or cure your child. It offers something far more valuable. It is a treasure trove filled with pearls of wisdom on how to emerge from this arduous journey with your sanity and sense of humour intact, your family stronger with your relatives and friends still willing to be on your Facebook friends list. It is written with such candid ease, it had me laughing and crying many times over.

It amazes me that although geographically we are so far apart and that these two mothers are in a country which offers a support system that is in stark contrast to mine, yet we all share similar experiences of exhaustion, feelings of guilt and anguish when dealing with our children.

I identify more with Morrell’s story as my son is very similar to hers. She had me in stitches describing the kind of mother she wanted to be as an “all-wise and all-loving perfect mom, a close approximation of Mother Teresa had she chosen the biological route…”

And yet, on the very next page, she had me fighting back tears, as I read and recognised those very feelings that I suppressed and refused to entertain whenever it rears its ugly head during the darkest stretches of the journey.

“When I was honest with myself, I resented him for being so difficult. I blamed him for robbing me of a future that held any chance of happiness.”

While I was in North Carolina last year for an autism training course, I had the opportunity to meet these two remarkable ladies and posed them a question: “Knowing what you know now, what is one that you wish you knew earlier?”

Morrell replied: “I wish someone could have told me to just breathe, because things do get better. Just hang in there and keep working on it.”

That injection of hope was just what I needed to propel me to soldier on. William Shakespeare was probably right to say: “The miserable have no other medicine, but only hope.”

Talking about misery, it brings me to another book, Boy Alone by Karl Taro Greenfield. It is a gripping account of a family’s struggle with Noah, Karl’s severely autistic brother, and their search for help. Karl talks about how his family life revolves around Noah, and how neglected he felt.

“I can feel the room tilting toward you whenever you walk in ... all the attention and parental love drains into you, never to come back out. You possess gravity out of all proportion to your size.”

His parents’ preoccupation with Noah, leave them little time and energy to care for Karl as they seem oblivious to his stealing sprees and drug addiction. The title Boy Alone refers as much to Noah, as to Karl.

Thinking it is a book written by a sibling, initially I wanted to pass this book to my eldest (neuro-typical) son once I was done with it. In the end, the depressing book left me drained of energy and hope. I wanted to either throw that book or myself out of the window. It was brutally honest, definitely not a recommended read for emotionally vulnerable parents. In the end, I gave the book to a social worker who wanted to start a sibling support group.

There is probably a 20-year gap between Noah’s time and that of Eric and Justin. I guess services improve with every generation and that is why the outcome for Noah as opposed to Eric and Justin, is so starkly different.

No matter how bad it seems, like Morrell says, “just breathe”. The key is that we keep working at it. With hope and faith in our hearts, despair has no chance to take root.

> One Voice is a monthly column which serves as a platform for professionals, parents and care providers of children with learning difficulties. Feedback on the column can be sent to onevoice4ld@gmail.com.

For enquiries of services and support groups, please call Malaysian Care ( 03-9058 2102) or Dignity & Services ( 03-7725 5569) or e-mail: onevoice4ld@gmail.com


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