The School Year Comes to an End
We had yet another ARD Meeting (really a continuation of the last several). Most parents of children with school IEPs (Individual Education Plan) understand how frustrating it can be to negotiate a fair plan for your child. We have found that this is even more the case in our district currently. After a long year of fighting for an OT assessment for Cam it was finally granted. The districted decided to allow 25 minutes of OT to Cam each week (while there were 3 weeks left of school...thank you very much!). Additionally, they denied our request for Summer School Services. The first reason given to us was that the schools assessment indicated that any regression Cam displays at times off from school are able to be made up within eight weeks (meaning he could be back to where he began in eight weeks of school). I argued that this appeared not only counterproductive but also discriminatory. Children in regular education classes qualify for summer school if they don't appear ready to move up to the next grade yet and summer school would be able to catch them up to the appropriate grade level. We had been told at our last meeting that the committee's goal was to have Cameron prepared for regular education Kindergarten in the Fall of 2006 but the denial of Summer School does not appear to align with this goal. We were then informed that the only summer school services being offered by the district this year was to students who did not have English as their primary language and that no other services were available this summer. I learned days later that this statement was a blatant lie and that other students (English as only language) are in fact receiving summer school this summer. Writing a letter (and perhaps hiring a lawyer) are still on my very crowded "to do" list. Nonetheless, we have decided to have Cameron attend a private school next fall as it appears even if we fight 24/7 with our district; the best it has to offer may not be worth the time and energy it will cost us.
2006 Autism One Conference, New Treatments and BIG WOWS!
We drove to Chicago for the Autism One Conference this year. We decided to schedule appointment for Cameron with his DAN Doctor's office (Dr Usman) both before and after the Conference.
Before the conference Cameron received his first IV Chelation session (CAL EDTA). We were very nervous about this new treatment and how Cameron would respond to the process. It went marvelously! He was a bit upset when we begun as we placed him in the papoose and put the tunicate on. However, he only whined for about 30-60 seconds and then was pleasant and was smiling and laughing for the rest of the session. It went very quickly (less than 10 minutes). When it was over, Cameron insisted that he needed to take the IV equipment and papoose home with him.
I was not expecting any big changes or response from this first IV. Boy was I wrong! Less than one hour after receiving the IV we visited a local grocery store to pick up some supplies for our lengthy hotel stay. Cam walked in and made his way directly to the fruit informing me that he must purchase an apple and an orange (which he never asks for at the store). I decided to put him in a cart at that point as I was fearful he was going to end up with an armful of purchases before we left. We then started our shopping spree heading through the deli/bakery to the main aisles. As we past the deli Cameron spotted a women behind the counter (who was paying no attention to us but busy working). Cameron screamed to her "Hello! Hello!!!!" When she didn't look up or respond to him he began waving his arms and hands at her and yelled "Hello, my name is Cameron! Hello!!!" I just about began laughing and crying hysterically all at the same time. Cameron has never initiated contact with someone (particularly a stranger) before. Typically, someone will greet Cameron and I will prompt Cameron to respond to them (i.e., "Cameron say hello."). If we were ever looking for a sign that the IV had made a difference this was it. After we returned to the hotel, this behavior continued. Every time we stepped into the elevator with another person Cameron would immediately introduce himself to them.
And the good stuff didn't end there. The next night I was sitting in a chair working in our room. Cameron began climbing around the chair that I was in and grabbed onto my hair to catch himself from falling. I let out a scream and told him to stop. He sat down next to me, looked right into my eyes (more deeply than he has since he was an infant) and asked "are you okay mommy?" I caught a glimpse of my husband across the room (with his jaw on the ground), began crying and told Cam "yes Mommy is great!" For those of you reading this who are unfamiliar with ASD; there were so many wows in this very brief scenario. First, the intense eye contact of course. Second, that Cameron realized that Mommy was an individual and had a sense of Mommy's feelings. And third, that Cameron actually asked a question of Mommy that was not egocentric. It was a 100% normal experience for a neurotypical child, and 100% the opposite response in every way for a child with ASD.
Saturday night, we attended a benefit dinner at the conference. We bought tickets and brought the children (and Apollo of course) with us. Had we brought Cameron to this dinner last year he would have sat where we placed him, would never have touched any of the food offered (accept the bread), would have been non-verbal the entire night, and would have had his head down with an electronic device (likely a telephone or calculator) ritualistically typing and counting endlessly. None of this was true this year. Cameron tried the items served to him (most of which he decided he didn't like after trying), responded to others, played games with his sister, and most surprisingly danced the night away with all of the other adults on the dance floor. Several minutes after Mommy and Daddy sat down Cameron ran to our table, grabbed his father's hand and said "C'mon Daddy, come back out and dance!" Yes, many of us were in tears this night.
The conference itself was wonderful. Having immersed myself in research and as we have attended several conferences this year, I was expected much of the information to be a review. There were several doctors who were able to present and discuss their most recent data from some of the most exciting studies being completed currently (regarding chelation and HBOT). The preconference days also included some fabulous information about family health and hands on cooking instruction for some of the popular diets for ASD kids.
We ended our trip with another appointment at Dr Usman's office. First to review Cameron's latest labs (from his last TD-DMPS challenge) and then to develop an ongoing treatment plan for the coming months. Cameron's labs showed that we are getting some of the metals that are often precursors to pulling large amounts of Mercury. However, we are also pulling enormous amounts of Lead and Uranium. While lead poisoning isn't uncommon in kids with ASD (lead is found is so many of the things in our environment and these kids have difficulty excreting it), the Uranium surprised us.
James Adams (who is competing a DMSA study in Arizona) reported that the children that he treats often have high levels of Uranium because there is a large concentration of it in the state of Arizona. I begun looking into how Cameron may have been exposed to so much uranium. While this is also a problem in South Texas, I have not found any information that it has been found in high concentrations in any areas that we have resided with Cameron. I'm still looking into it; but as of now I have hypothesized that North Texas may have uranium in the air or water supplies as it is carried from South Texas. I know that the studies done in South Texas were prompted because of the mining done in that region. However, I have not yet seen a recent study done in North Texas.
We completed another IV before leaving the office. Typically Dr Usman recommends spreading IV's out by two weeks; but she agreed to complete another for us as we had traveled so far and Cameron appeared healthy enough to handle it. This time Glutathione and Vitamin C were added to the IV. Again Cameron was a star during the IV, even though the nurse had difficulty getting an adequate vein on the first attempt and had to start over again on another. Afterward we headed home for our long journey back to Texas. Cameron became a bit grumpy and showed signs of regression at first. We are unsure if this was from the added Glutathione (he does well with TD and Oral Glutathione) or because we pushed his body a bit too far by completing another IV within one week. However, he bounced back within four days time and is again moving forward.
The other side effect that we found with this second IV was an increase in urination on the second day. This made traveling 1,000 miles by car quite interesting. Cameron was needing to urinate every 20-30 minutes, and he must have the largest bladder on the planet because the urine never seemed to stop flowing when we would take him to the potty. We often felt like we were in some wild comedy movie as Cameron seemed to urinate forever. At one point we had just stopped for a potty break and were back on the road when Cameron began crying that he had to go again. Usually he has a bladder of steel and can hold it without a problem. He definitely has never cried because he had to go so badly. Well, luck would have it that we were absolutely in the middle of nowhere and the next exit was 10 miles down the road. We ended up having to let him pee in an empty cup which he completely filled.
In the News
Dateline aired a story on Chelation Therapy and Autism last night. If you would like to view it you can find the video file at http://www.msnbc.msn.com/id/13102473/ .
This site was last updated 01/09/09