Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Sunday, January 30, 2011

He Does!

OK........deep breath.....hold it.....now let it out slowly...phhhhhhhhhhhh

Are you ready?

Our latest neuropsych testing indicates that Weston does indeed have Asperger's Syndrome.

I do not know whether to laugh or cry since this is the 7th or 8th diagnosis my children now carry. Nicholas diagnosed with, Prader Willi Syndrome, Von willebrand's disease, epilepsy, scoliosis and hypothyroidism is only somewhat ahead of Weston who now is diagnosed with ADHD, anxiety and Asperger's syndrome.

Not to mention of course, my mother, diagnosed with dementia and hypothyroidism and my husband who we both believe suffers from ADHD.

Ahhhhhhhhhhhhh!

When I was little, my mother nicknamed me, Clara Barton. She called me this since I always seemed to have a temporary field hospital set up somewhere in the house. Here, I cared for a variety of sick or injured animals. Flightless birds or abandoned baby squirrels were often found resting comfortably in shoe boxes lined with hand towels. I think perhaps my mother and I knew on some unconscious level what the future held in store for me.

Now, many years later, here I am surrounded by loved ones who need me. My home, more like a permanent field hospital, filled, this time, with precious children instead of helpless animals.

And so begins that "all too familiar" process of educating myself on yet another syndrome.

Asperger syndrome is an Autism Spectrum Disorder that is characterized by significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. It differs from other Autism Spectrum Disorders in that language and cognitive development is typically in the average range. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported.

Surprisingly, our psychologist, Dr. Nathan still disagrees with this diagnosis, her opinion based on the fact that in Weston there is an absence of  "core autistic-like" behaviors, namely the repetitive patterns, narrow interests, atypical language, clumsiness and he does not lack empathy.

The 10 page neuropsych evaluation sums it up by describing Weston as having "at least mild Asperger's syndrome/Autism Spectrum Disorder" with a recommendation that he have a full evaluation neurologically given these findings, of the sort which can be obtained through the LADDERS Program.

The LADDERS program is the Lurie Family Autism Center of Massachusetts General Hospital for Children where they specialize in the diagnosis and treatment of Autism Spectrum disorders, Rhett Syndrome, ADHD and the like.

So, do we now journey in to Boston to subject Weston to even more in-depth testing, to tell us what we now already know? Or, do we carry on and continue our quest to help our son live a happier life.

The LADDERS program is considered one of the best diagnosis and treatment centers in the country, where it is almost certain Weston will benefit from their expert intervention. More information will no doubt be helpful in our development of a proper educational plan for Weston throughout his middle school years.

My primary objective is to protect Weston's precious self esteem so that he may see himself as a successful student and happy pre-teen boy. So, I guess it's off to Boston we go.

It's funny, although we have yet another diagnosis and a slew of new appointments to schedule for Weston, he hasn't changed. He is still the same loving, funny, smart, active young man whose new diagnosis will help him to qualify for many new therapeutic programs to help make him feel good about himself!

Hey Weston.......