Vacation from Autism

My oldest daughter and I took our first vacation away from my wife and my youngest daughter, who is afflicted with PDD-NOS. The separation was toughest on the younger girl, Kaitlyn, because without a doubt her older sister is her “BFF” (Best Friends Forever). Her sad words as we left—“Nicole, I will never see you again”—uttered while tears rolled down her face, still haunt me today.

So, off we went to spend six days in Montauk, New York, visiting with my family and soon to be 99-year-old grandmother, who resides year round in that majestic location. After spending time in Montauk, I always find myself coming home, even after 50 years of visiting there, grounded spiritually and at a much better place then when I left.

Back home, Kaitlyn stayed with her mother and attended a wonderful camp in Westwood, MA. YouthCare Summer Camp, affiliated with Mass General Hospital (MGH), has been an eye-opening experience both for our daughter and us.

Just a week before, when still negotiating an appropriate IEP since our “Stay-put” is going on two years old, the new Sped Director made it a point to explain that buttoning was a very difficult task to master. With the help of the YouthCare camp councilors, our daughter mastered that life skill within a week's time. Go figure!

There is no vacation from autism, but recharging one's batteries is a good thing. As long as 1 out of 150 children are being diagnosed with an ASD, one must never give up fighting for appropriate education, health care services, and, of course, a cure for all families with children afflicted with an ASD.

We are faced with an undeniable epidemic, and how we handle it—or choose not to—will say much about our generation for years to come. So let’s keep recruiting others to join the fight and demand a cure in our lifetime. Anything less, in my opinion, is unacceptable and unconscionable.

David -Thank you for sharing

David -

Thank you for sharing and well put - there is no vacation from autism. I find our children's absolutes touching and revealing in ways that often shake me out of my boxed thinking that limits expression to rules of semantics. Kaitlyn's sad words, "Nicole, I will never see you again" remind me of my own son's liberal and creative usage of language.

For instance, my older son, Jarad who is verbal, often likes to proclaim today is the "best" day ever. Jarad has dozens of "best" days. Each of them filed away in his incredibly gifted memory for dates.

Grammatically it is not correct and Jarad has been called to task on it. But I support his multiple “best” days outlook on life. Howard Gardner, a Harvard professor, has been able to introduce the concept of multiple intelligences where previously intelligence was considered a single aggregate of reading, writing, arithmetic – a very coarse-grained and limiting view of any individual's potential.

As Jarad continues to improve I have no doubt that cultural expectations will exert their controlling influences. I also suspect Jarad will be less susceptible to accepting verbatim what passes as common knowledge.

I agree. We must end autism in our generation. Jarad’s best days must be tinged with the realization that his optimism is not shared, understood or accepted by the more grammatically restricted among us.

"Best"

Ed,

Kaitlyn often says this was "the best day ever!"

David