Just This Side of Normal: Glimpses Into Life With Autism.

Just This Side of Normal: Glimpses Into Life With Autism BY ELIZABETH KING GERLACH

Published: 1999, Four Leaf Press. 139 pages.

Available through the EP Library: [phone]: code FL101AT.

Cost: $19.95 plus shipping and handling.

In the pages of her recently published book, Elizabeth King Gerlach, author of Autism Treatment Guide and founder of the parent advocacy group, Mothers From Hell, shares a very personal account of life with her son Nicky, 12, who has autism. Just This Side of Normal is a story told through brief episodes Elizabeth recounts, some revolving around the trials and stresses of caring for Nicky, and some celebrating breakthroughs that served to renew and deepen the bonds between parent and child.

One example of the heart-wrenching emotions that a parent of a child with autism experiences is captured in passages like this:

"Every time I give Nicky a kiss he wipes it away with his hand as if it were repulsive. I know it isn't me; I know it is a `sensory issue' or a `compulsive act,' more features of autism. Understanding doesn't make this small act hurt any less.

One day I blurt out, `Please don't wipe my kiss away, rub it in and make it stay.' Something about the rhyme makes him laugh. Something in him is freed up. Perhaps he understands the importance the kiss carries for both of us. Perhaps he wants to oblige me in this small happiness?

`Kiss me again,' he insists. The hand brushes up to the cheek in the usual fashion, but this time he smiles and says, `I rub it in and make it stay. Kiss me again."

Advocating for their child's rights in school is another facet of life for parents of children with disabilities. Elizabeth describes her experiences in the front lines, attending her son's school Individualized Education Plan (IEP) meeting. The meeting includes seven school-district personnel. Elizabeth feels it is imperative that Nicky remain where he is. He is comfortable and familiar with the school, and has been improving. She feels uncomfortable and intimidated:

"I wonder how often the administration banks on this subconscious fear and feeling of inadequacy, and on the lack of power the typical parent like me must feel. We are so very out of place. Neither a student nor a teacher. Our children are viewed as `problems.'

The tester removes his glasses and runs his fingers over his eyes as though he has a headache. He has tested my son's cognitive skills. He has administered the test without consulting us as to what might have been used (stickers, M&Ms ...) to motivate Nicky to answer the questions. We wanted Nicky's scores to reflect his usual cognitive abilities, not his ability to `test.'

`The results,' he informs me, shaking his head, `would indicate that your son is a nonreader.' He drones on for another twenty minutes, finishing with the pronouncement, `Your son's placement at this school has been a failure.'

Shock and rage boil inside me like lava. I erupt.

`My son has learned how to walk in a line, he has learned how to raise his hand, he has learned how to sit in class, he no longer runs away, he has participated in school performances. How dare you call my son's time here a failure!' I hardly believe my own voice. I am shaking. The insensitivity of this man is the last straw. Having just completed a special education law class this term, I quote the `stay put' provision, which guarantees a parent's right to appeal any decision regarding a change in their child's placement.

The atmosphere in the room changes. The teacher is in tears. The principal assures me that it can be worked out. This seems like a bad dream."

At the end of the book, Nicky is 12 years old. Elizabeth reflects during the rare quiet time of early morning while looking in on her sleeping sons:

"I wouldn't, couldn't, have imagined the complexities of mothering a child with autism--the struggles, the heartaches, the opportunities to learn and love. Once these boys were only the dream of a girl who wanted to be a mother. Now they are two living `wishes come true,' with wishes of their own. What new dreams and possibilities are yet to be for them?"

Excerpts reprinted with permission from the author.