Sunday, October 2, 2011 at 10:30AM
"An amazing book for a very special audience..."
Life at the Edge and Beyond:
Living With ADHD and Asperger Syndrome
by Jan Greenman
(Jessica Kingsley Publishers, 2010)
[Paperback, 208 pages, $19.95 U.S. - buy for less on Amazon.com]
I recently met Jan Greenman in the Facebook community: Parenting Aspergers Children - Support Group. She mentioned her book in a conversation thread. I researched and ordered the book on Amazon.com. While I waited for Life on The Edge to arrive, I friend-requested Jan and we had (and continue to enjoy) a wonderful conversation. We hit it off immediately, with the instant recognition of kindred spirits and shared experience.
Life at the Edge and Beyond: Living With ADHD and Asperger Syndrome is an amazing book for a very special audience -- a must read for anyone involved in bringing up a child on the Autistic Spectrum. It is an extremely personal, brutally honest memoir of one family's 18-year journey through the dark forest of having a child who is different, knowing something is "wrong" -- having no idea what -- and the agonizing challenges of education, "expert" advice and opinion, evaluations, labels, diagnoses and often-conflicting recommendations.
From Chapter 11 - Friend or Foe:
"Of course every man and his dog has the answer. 'Give him to me for a week and I'll sort him out.' Yeah, right, it's a lifetime's job. Or the more subtle approach, but nonetheless deadly, 'If I were you I would just ignore him, he'll soon get fed up.' If only. Do you think I haven't tried ignoring, tried everything? (Including head-butting him once in sheer and utter frustration.) The hardest thing, as Luke's mum, has been to understand at an instinctive level that his behavior was and is a part of him. And then to juggle that understanding with the confusion, damage and embarrassment that his behavior presents both to him and us, all on a few hours' sleep and with next to no professional help whatsoever in our daily lives."
For many years, Jan and her family struggled from one crisis to the next, feeling like there was no help available, no protection for the mother or younger sister as Luke grew increasingly frustrated, aggressive and violent toward himself and others. Life at The Edge is hard to read in places -- disturbing, even -- as this is the real-life story of a brave mother's fierce love, desperation and advocacy for her child. Jan tells their story with warmth and humor, with a practical edge of hard-won wisdom. At the end of each chapter, she offers practical tips and includes honest experience and insight from Luke and his younger sister, Abbi.
Luke's Tip, page 83: "It was a big relief for me to know that I had another label which explained my confusion and my difference. I knew I was different under the skin and I felt really lonely. When I knew that my loneliness had a name it made such a difference. I tell people that I have Asperger Syndrome. It explains why I behave differently sometimes."
For the parent of a child with similar diagnoses, there is so much here that is familiar and heartbreaking, from difficult social interactions to obsessions to sensory issues and resistance to change; breakdowns and breakthroughs. Parenting a child with any sort of disability or difference is challenging…and often lonely. As my friend Jan Greenman explains: "We belong to a different family. One that we wouldn't choose to belong to, but one that understands, really understands and the relief is enormous." Indeed.
Update: Luke is now 19 years old. He has been able to overcome some of the limitations of Aspergers and ADHD to advocate for himself and others in the Autistic community. He is an extraordinary young man and now serves as a young ambassador for Ambitious about Autism in the UK. Enjoy this 8-minute interview with Luke and his Mum -- you'll be glad you did: