I’m Glad That’s Over!

December 07, 2012

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Author: Janice, Grafton, ND

“I’m glad that’s over!” That’s what I thought every morning after pulling away from the school. I dreaded taking Charlie to school every day. And then as the school dismissal time approached, I dreaded going back. Ever since Charlie’s diagnosis of Autism, every day seemed to bring a new challenge. I was getting exhausted. When driving to school, we had to sit in the correct seats, not start the car until all the doors were closed, not open the garage unless Charlie was in the house or inside the car with all doors closed and drive the exact same route to school each day. On Mondays, I had to allow time for the garbage truck to be off our street so that we wouldn’t be forced to stop behind it. All this and we wouldn’t even be to the school parking lot. Once we got to the school, it was an all-out effort of social stories, video modeling, bribes and the help of several teachers to get him into the building.

I also felt like we were running out of time. Charlie had been through 2 years of ABA, special Ed preschool, OT, PT, speech, music therapy, PECS and early intervention program by the time he turned 5. There was progress but not profound progress and it was barely noticeable to people other than Joe and I. ABA taught him to speak. But we needed to use Discreet Trial Training language in order to make that happen for him in the real world. We loved hearing him speak but we were anxious to hear his true voice.

Charlie was almost 5 years old when we started the GFCF diet. Just like with ABA, we were told it was a waste of time. But attending a DAN! Conference told me something else. (today, this conference would be similar to attending a TACA Real Help Now conference) After the conference, the only place I could find to learn about diet for autism was the TACA website. We took all casein out of the house (for all 6 of us). That was on a Friday. On Monday, the babysitter was in awe with eye contact. The bleeding eczema was gone in a week. We were onto something, and after 2 weeks we took gluten out. We were expecting this to give Charlie improvement in as much time with his symptoms with removing casein was the wrong expectation. It didn’t happen. After learning more about allergies and intolerances, we looked to other foods as possible problems for him. By the time our first DAN! doctor appointment came around, (today, we would seek the help of a MAPS doctor) we had his diet limited to easily tolerable food, had done allergy testing, had tried rotation diet and more with the help of the TACA website.

Charlie’s Kindergarten & 1st grade years had high points but a lot of trying times. The day I watched him sitting on his para’s lap attempting to lick her arm or the day it was suggested he be excluded to Special Ed were at the top of the ‘Bad Days List’. But toward the end of 1st grade, suddenly I was hearing “in the last 2 weeks we don’t know what’s going on but Charlie is doing great”. That was when I got my first hug since his regression into autism - he was 7 years old. By this time we had the help of a mentor, the Specific Carbohydrate Diet behind us, many supplements, and intensive therapies. Progress was still slow but steady. As for Charlie covering his ears, being removed from regular education, licking the staff, and many other issues - I can gladly say “I’m glad that’s over”.

Update: Charlie is now in 5th grade. He was in a piano recital today. He sat with peers until his turn, walked to the front, bowed, played “Little Drummer Boy”, was applauded as he bowed and returned to his seat. When we go to school, I can take whichever route I please. We sometimes do the younger brothers’ drop-off first and sometimes Charlie and his older brother are first to arrive at their school. It doesn’t matter. It’s a race to see which of the older boys can sit “shotgun” and sometimes Charlie isn’t the winner and it doesn’t matter. We are still working toward recovery. But as for the dreaded drives to and from school and things in between, I am so glad that’s over. Our family has a way of describing the severity of autism. Large, Medium and Small. We recently spent an evening watching old home videos. We were all amazed at just how large autism used to be. The nonverbal days are over; we no longer speak in Discreet Trial Training language in order for Charlie to respond. He is with us; he is a part of our world in big ways. Autism is size Small and we all agree that there are plenty of times size large creeps in but we need to add another size for plenty of times too . . . Extra-small.