Sunday, July 5, 2009

Sign language as a bridge

I mentioned in a previous blog that I had, at the very outset of this journey, booked appointments with 2 separate speech pathologists. The first one could take us the very next day. In hindsight, I now know full well why his schedule was so free. Another practitioner could take us in six weeks time, Mary Pope. We saw her as well, she was the best speech therapist in the area. A great turn of luck opened her schedule up early for us and she actually saw our son within four weeks time. The difference of style, approach, sheer volume of knowledge and experience was evident from the outset. In addition, she was familiar with the GF/CF diet and was incredibly encouraging about our continuing with it. At this time, our son had been on the diet for a couple weeks already. He had regained a handful of words, however; they did not hold very functional meanings to him. Ball, could literally mean anything from, "I'm hungry" to "I want to play outside".

We met with Mary for 2 hours, longer than with the other gentleman. She interviewed us, observed our son, played with him and worked with him for a short time. When we left he knew 5 pieces of sign language: More, please, all done, thank you, and no. The best part was that they were all functional. He used them all appropriately, right from the start. There was no question about it that he knew what he was saying to us. The best part was that now he could verbally say one word, but could now communicate a small sentence. Just by saying juice out loud, he could now use his hands to say please, more and thank you. Then we would verbally model the whole sentence verbally back to him: "I want more juice please." This was a sudden, huge step forward for us and him. We could see his frustration levels go down right away, not that that would last forever.

Our son began seeing Mary twice a week in the beginning. Eventually, it went down to once a week and in our case eventually discharged. She was a godsend to our family. She was able to work without food rewards, unlike many therapists. She was intensely dedicated and highly creative. Our son's allergies were on the rise and she was incredibly careful to use only products that he was not allergic to. Sign language was a large part of working with her in the beginning and she recommended the book More than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder by Fern Sussman , I recommend it too. It helped a lot, it gave us a greater sense of what our new job as parents was. We were now expeditor's of language and puzzle solver's extraordinaire. Below is a photo of them working together towards the end of his therapy.

Around the same time we were discovering the severity of his allergies. He began having reactions to almost everything he was eating and soon began reacting to art supplies that he worked with. More than once therapists had to end sessions because his face had turned red and swelled up from having magic marker or glue on his skin. Soon I figured out the maze of art products, who to call ,what to verify and what he could safely use. I created a portable art box that travelled with him, one for home and one for school. The website is an excellent resource for this to start out, but if there are more allergens than gluten and casein you need to call the companies yourself.

Then my son went allergic to beef. For the life of me I couldn't figure out why. He was on a rotational diet, he only ate beef once every 4 days. I'd known he was allergic to something for a while. I'd seen the telltale signs he gives off. Dark circles under his eyes, loss of appetite, lethargy, intermittent stomach pain and constipation and diarrhea at the same time (believe it or not). Certainly not one sign pointing to a specific food. Eventually one night he vomited up all the beef he had eaten the day before, nothing else just the beef. Ah, the final clue. A week later it was the pork. I couldn't understand why, though. We rotated his food religiously, we still do!

Then one day in the health food store I saw vegetarian pill capsules and asked the owner about them. He told me that gelatin capsules were derived from pork and beef! Maybe I'm just a big dolt, but I never imagined in a million years that the gelatin capsules (supplements) I was giving my son, daily, contained traces of beef and pork. It turned out he was having beef and/or pork everyday! I ran home and read every box of Knox and Jell-O I had in the house, they all contained "Gelatin". Infact, Knox is nothing but gelatin. Yet there is no clue as to it's origin on the box. Probably because most people would be grossed out.

Almost needless to say, we switched to vegetarian capsules immediately. I complained to all of the supplement companies I dealt with, and it helped. Apparently, I wasn't the only one with problems. We still use all the same supplement companies now that we did then, but they all use vegetarian capsules now. Power to the people! Never doubt that your opinion is important to a company that wants your money!

In two weeks, why networking, researching, record keeping and attending conferences is so important!

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