Saturday, August 8, 2009


I've been thinking about blog topics now for a while - I've got quite a list - so I decided it's time to go for it. I hope other parents out there with children with special needs, autism and undiagnosed multiple disabilities will relate to my random thoughts on adapting our family life and home, and join me to discuss topics which may not be main stream but are truly vital to families like ours.

Our Family

My husband Peter and I have two beautiful children. Our tall, willowy daugher is almost 8 and going into second grade. Our handsome and gentle 13 year old son has an undiagnosed developmental disability with significant motor and communication challenges. He does not walk or talk independently and uses assistive technology including augmentative communication aids throught his day. His diagnosis, if you can call it that, includes terms like "static encephalopathy" and "cerebral palsy". The cause for his disability is unknown. He was born during our stay in London, full term plus, healthy and beautiful.  It was not until he did not meet developmental milestones like sitting independently, did we suspect any delays. From age 9 month on,  he's been seen by eight different neurologists, brain malformation experts, metabolic specialists (on both sides of the Atlantic but mostly at Children's Hospital, Boston) and a cadre of rehab therapists - - trying to put a label on his disability. The only finding? - a reduced amount of white matter of unknown etiology. Autism has never come up in the dialogue.

Unlike other families you read about who were told their child would never thrive, walk or talk (and then turn around to surprise them all but doing just that!), we have been told nothing. Without a definitive diagnosis, no one has ventured a guess as to what our son's future looks like. It's apparently totally up to him, and us.

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