Tuesday, August 25, 2009

In Out, In Out

It seems the most I can take my two kids and one wheelchair in and out of the car is twice per outing. Call me lazy, call me weak but after two errands I have exhausted my patience and my back. Perhaps this is true with all kids, but my kids start to fuss and whine after two stops. I have a mental rule I go by: if it takes longer to get them out of the car than it does to complete the errand, I don't do it with them. Needless to say, I have become a late night shopper - sans kids. What's your rule?

Monday, August 24, 2009

Care for Disabled Adults...with Autism

The Boston Globe ran an article this past weekend about a wonderfully large grant received by Massachusetts General Hospital (Boston) to start a first of it's kind specialized treatment center for adults with autism. The Nancy Lurie Marks Family Foundation generously donated $29 million to MGH to provide much needed medical care for the growing population of adults with autism.

To quote the Globe, "One of the new center’s primary goals is to train primary care and emergency room physicians and nurses, as well as those who work in surgery, in diagnosing illness in this group of patients and in techniques to improve their interactions." Sounds like a good idea for ALL our kids/adults.

Coincidentally, the new Medical Director will be Dr. Ann Neumeyer, one of the eight neurologists to have treated my son over the years. When the time comes, maybe she'll bend her admittance requirements to visit with an old friend - who doesn't have autism.

See the Globe article: http://www.boston.com/news/health/articles/2009/08/23/mgh_to_target_adult_autism/

Friday, August 21, 2009

Have's and Have Not's

I keep a mental inventory of all the thing that I love about my son despite his special needs and challenges. Here's my list of his have's and have not's:

He has:
  • thick hair and long eyelashes any woman would die for
  • baby smooth skin without a blemish
  • a long, lanky physique and looks great in clothes
  • an infectious smile and great teeth (says his dentist!)
  • a sweet and gentle disposition
  • the patience of a saint, which makes him an excellent shopping buddy!
  • an enduring love of books and could be read to 24 hours a day
  • an affinity for pirates, knights and swords
  • a love of watermelon and other things juicy
  • excellent health
  • a "diagnosis" of static encephalopathy or cerebral palsy
  • an accessible home, where he can crawl from one end of the house to the other - and he does!
  • five wheelchairs and strollers (more to come about this)
  • excellent driving skills; manages a 400+ lb. power chair with finesse and caution
  • dozens of communication choice boards and low tech devices to help him "speak"
  • the ability to feed himself, most of the time
  • new skills; such as drinking from a straw, getting up onto the couch by himself :-)
  • braces and orthotics in a variety of shapes and sizes
  • avoidance behaviors
  • managed his drooling with help from medication
  • sensitivities to certain smell and loud noises
  • a dedicated team of teachers, therapists and other educators
  • doubled-up health insurance coverage
  • grandparents who love him
  • a sister who makes him laugh
  • a dad who would feed him and bathe him until he is 100 years old
  • a mom with a sore back.
He does not have:
  • the ability to walk independently
  • the ability to talk independently
  • the ability to eat ice cream without help
  • essential skills such as reading, spelling or addition
  • ability to dress himself but can choose this clothes (preferably sweats)
  • interest in sports or girls (yet)
  • an inappropriate IEP
  • temper tantrums
  • aggressive behaviors
  • stamina (he still benefits from a nap)
  • gastrointestinal problems or food allergies
  • seizures
  • sleep problems
  • an autism spectrum disorder
  • a compassionate and sensitive sibling
  • friends.
The have's exceed the have not's!  Try this yourself!

It's Not Autism

Every one has heard about the facts about autism these days. It's in the main stream press, on the politcal agenda and and all over the web. Research says 1 in every 100-150 children receives a diagnosis of an autism spectrum disorder. But have you heard about the thousands of children with undiagnosed disabilities? What you ask? - with all the excellent hospitals, research and genetic testing now available? There are non-profit support organizations, list servs, blogs and more out there to support parents like us and our snowflake kids. But kids like my son rarely make the news (and then only the sensational tabloids) and there aren't enormous fundraising machines supporting wide scale research, or lobbying groups pushing for legislation and class action law suits. We struggle along trying to do the best for our needy kids and our families.

Occasionally family members and friends ask if our son has autism because he did not look them in the eye or occasionally does some repetitive act. No, I say, he has a developmental disability and like autism, our kids may become over stimulated and do not adapt to social norms. Sometimes it would be easier to say yes, he does have autism and not have to explain it all.

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.