Sunday, June 08, 2008

Severe Autism Reality - Adult Autism Care Crisis for Maine Family

Caring for severely autistic persons is not easy and it does not get any easier as autistic children become adults and parents and other family members also age. In A Crisis in Caring Meg Haskell of the Bangor Daily News has an excellent report on Jennie Segerson, a 29 year old severely autistic Maine woman who has been living with her mother and family members who obviously love her very much. Jennie's mother is now 69, blind as a result of diabetes, and the private care agency workers who come to her home are poorly trained and motivated. Jennie herself can become aggressive and violent to herself and others. Her mother now faces the likelihood of permanent separation from Jennie because she can no longer care for her safely.

As the father of a severely autistic boy in the neighboring Canadian province of New Brunswick this story really hit me. Ms Haskell pulls no punches telling the truth about Jennie's severe autism challenges. It is not the kind of information you are likely to find reading about autism on Neurodiversity blog sites such as those of the so called "Autism" Hub bloggers usually written by, or about, high functioning autistics or persons with Aspergers. But while Ms Haskell describes Jennie's severe autism realities candidly she also conveys the deep love Jennie's mother has for her and the anguish she feels at the prospect of losing her daughter.

On a lighter note I had to laugh when reading about Jennie's excitement as she waited for her brother in law to arrive in his silver truck to take Jennie to her day care program:

""Silver truck!" she exclaimed, her shy smile breaking into a wide grin of delight and anticipation. "Silver truck!" She clutched her battered doll, Silver, in glee, waiting for the sound of the pickup pulling into the driveway."

I thought of Conor as I read that paragraph and his requests for "silver car" as a way of summoning Dad home from work ... in my silver Camry.

1 comment:

Maddy said...

There is such diversity, but a common thread. Over here we are in the 'gold' phase, but we can sometimes get by with 'yellow' at a pinch.
BEst wishes