Tuesday, April 23, 2013

Trumbull High School Leads Way in Autism Inclusion

Gianna High School
Miss G at our local High School

Autism awareness month has been overshadowed by recent news events. The blue glow of landmarks and skyscrapers has faded away for most Americans. Even those of us touched by autism have put aside the month's label for the day-to-day reality of caring for, helping, loving our children. 

Last week was our April vacation here in our Connecticut town. That meant long days of Count_von_countdowntime, which is always difficult for my girls, who depend our their routine. Bella, my youngest, kept handing me her purple knapsack. And off we'd go to look at the calendar and re-count the days until school was back in session. Cue Sesame Street's Count Von Count, a Stagliano entertainment staple, "That's three! Three more days until school starts! Ah! Ah! AAAAAAAAAH!"

My husband and I have tallied 37 cumulative years of caring for kids with autism in our home, if we use age 3 as the starting age for each of our girls.  37 years of facilitating, guiding, dressing, undressing, feeding, cutting food, bathing, toileting (that's mostly completed I'm thrilled to report) micromanaging virtually every aspect of the girls' lives - not because we are helicopter parents - it's simply what's required to keep them alive. I wish I could tell parents of younger children on the spectrum that life gets easier as the kids grow up - but for us and for most of the families I know with high school age children - it's getting a whole lot harder. The gaps of early elementary school turned into chasms in middle school and then canyons in high school and in "adult life?" The current programs available expect my kids to live in a parallel universe of managed care as if they leaped from childhood to advanced old age in the blink of an eye.  (Won't happen.) It's a harsh reality rarely spotlighted by blue lights.

But....   all is not lost. Never.  That photo at the top of the post? That's the showcase at the entrance to our public high school. And that pretty girl holding the Martha Speaks book? That is my beautiful daughter Gianna. She is 16 and considered a sophomore. The book she is holding is for a third grader. But take a look - our high school is saying,"Hey! This terrific kid is a member of our community and we are as proud of her as we are of our honors student who is going to Harvard in the Fall."

When Gianna's teacher sent me the photo, I just sat for second and took in the huge message it sent to her classmates, her schoolmates, the teachers, staff, everyone who walks by. I'm proud of our high school for honoring Gianna where she is - and for who she is.  

I suppose the showcase is about acceptance, a word I usually abhor. Today? I accept it. Now to turn Martha Speaks into, "People with autism speak."

CoverKim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.


Roger Kulp said...

Once you add another 10-12 years,you'll catch up to my mom,who I lived with until she died last year.More on that in a minute.

Inclusion is not just for school.It means inclusion in the family and community,all across the spectrum.

I just found a copy of All I Can Handle in the Goodwill Clearance bins today,and I thought I'd pop over to see if this blog was still up and running.

I just thumbed through the book a little on the bus coming home,there are a couple of things already I didn't like.Like a number of parents who commented at AoA when you have brought it up,I do not agree at all with putting autistic people in group homes or residential treatment centers.If you recall,I have been very close to being put in such places a few times myself.If I had been,there would have been no way I would have gotten this far in getting a real diagnosis.

Dr.Frye has posted a couple of times at AoA about folate autoantibodies,cerebral folate deficiency and leucovorin.Last year,I tested positive for both the binding and blocking folate autoantibodies.In numbers high enough for a diagnosis.This was a full three years after starting on leucovorin,and six months dairy free.Dr.Stoller stuck with me,because I kept putting out test results that showed serious problems with folate.The improvement from the leucovorin was what kept me out of a home when my mother died.Now I won't be head banging,stimming,and hand flapping when I'm in my 70s and 80s.

In January,I went to see Dr.Rossignol,and he said he believes I probably have mitochondrial disease,because of my many regressions,my severe lack of muscle development(GI disease also played a part here.),and some of my medical problems,like a cardiac conduction disorder.He said I needed a full workup at the right hospital,so now I am on the waiting list to be seen at Arkansas Children's.

And you know who I have to thank for starting me down this road.

Kim Rossi Stagliano said...

Hi, Roger - how are you doing? Your Mom was a leader and a trail blazer. So glad the Leucovorin is working for you. KIM