We are going on vacation tomorrow, so this may be the last entry for a while, depending on availability of the "internets" in the Grand Tetons and Yellowstone Park. Rachel and I are both taking our laptops, so if we can find some wi-fi hotspots up there, I will update some, at least to describe the majesty and glory of God that we are taking in.
This is part 4 of an ongoing series called "A Journey Through Autism." I expect this "journey" to last a long time.
I actually left some things out the other day when I was listing recommendations made by the Cooks network people. I don't want to make them sound like total losers because there were some good recommendations made.
Christi reminded me that we did do the Speech Evaluation at Cooks and it was decided that the Speech therapy being given to Steph at her school was as good or better than they could do. Since that therapy was "free," we decided to stick with that.
We have an initial interview with a doctor today at noon that will hopefully result in some therapy towards social skills, which was something that Cooks recommended. However, this will be a one-on-one type of therapy rather than group therapy, which we feel will be much better for Stephanie.
And the timing of the resource and TAKS tests was wrong. Christi also reminded me that it was at the end of 5th grade that we finally got approved for "Resource" classes in Math and English. She failed the TAKS in 4th grade, but was advanced anyway by recommendation of the ARD committee. It is possible for the school committee to override the mandates of the state in special cases.
Stephanie is already approved for Resource in Middle School. This will be a totally new adventure, because in 7th grade, they begin the whole different teacher for each class thing.
Ok. Continuing with some of the recommendations...they recommended that, "in the classroom, it will likely be most helpful for Stephanie to be presented with verbal information in a clear, concise manner, avoiding sarcasm and phrases which can be misunderstood if taken literally. For example, stating 'snap out of it,' 'straighten up,' or 'if looks could kill' may be especially confusing for children with pervasive devlopmental disorders." EXCELLENT counsel!! I still have trouble with the sarcasm bit. Ocassionally, I still use sarcasm with Stephanie, which is totally useless. Or even counterproductive.
It was also noted that "inappropriate behaviors often are a result of frustration and stress." They suggested physical modifications which would provide "visual and physical order" and reduce "external stimuli to assist in focus and concentration." They also suggested "watching for peers who annoy Stephanie and positioning them away from her." Even occasional isolation to teach concepts or build on previous knowledge in a less distracting environment.
Predictability is paramount for chilren with any type of ASD (Autism Spectrum Disorder). Stephanie loves a routine, and her behavior usually gets worse in the summer when school is out. So, we aren't exactly celebrating the end of school!
Another suggestion is "stating clearly what is expected and allowing time to process this information." One teacher even suggested removing time restraints altogether as she noticed that this caused Stephanie considerable stress.
Stephanie also needs help using appropriate methods of seeking help. She is really not very good at articulating that she doesn't understand something. She is more likely to just sit there quietly and not get it at all.
Modifications such as breaking coursework down into smaller steps was suggested. Concrete examples of new material are always helpful. Children with ASDs have a hard time thinking abstractly. Also, allowing Stephanie to do as much work independently as possible ("independently" is harder to type than you might think...) might be helpful.
It is expected that she will have trouble generalizing instructions. This kind of theme runs throughout the recommendations. It goes back to the concrete/abstract thing.
These were mostly good recommendations, and the schools that we have attended since have done a good job of following them. In fact, we have had great teachers for her so far. We are always fearful, however (as we are now), of a new school. It almost seems that you have to completely start the process over with a whole new bunch of educators. We have to hope that the new bunch will be as sympathetic and helpful as the previous ones.
To another subject, now.
On Easter Sunday of this year, we began a gluten-free/casein-free diet for Stephanie. We had been considering this and were talking with Dr. Robert about it. He had recommended that we do a couple of tests on Stephanie to ascertain any allergies to gluten/casein, and had hooked us up with a dietician.
Christi spent about an hour speaking with Lori Zinar (the nurse who heads up the parent support group that we now attend), who said that the particular test in question was inconclusive at best and that we should just go ahead and start the diet. She is also the one who told us that we needed to see Dr. Hamel.
So we began the diet. Cold turkey, which all of the resources say "Don't do that!" We did it anyway. There is a helpful resource on the internet called tacanow, which stands for Talk About Curing Autism. We found a lot of good advice on diet on this site, including the ten week plan to getting glutin/casein free. Which we didn't follow, but it was still helpful. There are extensive lists on this site and another one, www.gfcfdiet.com, of foods that are allowable and forbidden. We were actually surprised at the number of foods that were ok. For example, Fritos. Well, duh. They're CORN chips! No wheat product there. And potato chips. Non-flavored ones, of course. Lays KC Masterpiece Barbecue chips actually have wheat product in them. You really have to read labels in this diet.
We also found a marvelous (however, somewhat expensive!) grocery store in Grapevine called Healthy Approach Market. They claim they have the largest selection of gluten/casein free foods in the DFW Metroplex. The reason? One of the co-owners has two autistic children!
Results? You betcha! We have seen really good results in Stephanie's behavior during this diet, and can really tell if it is compromised. We let her have a sausage stick at Scarborough Faire when her school class went. That was a big mistake. Took several days to get that out of her system.
Now, concerning Dr. Hamel, we began Stephanie on "PK Therapy" a few weeks ago. In fact, she has her third treatment today. I wish I could describe this treatment in more detail, but it has words in it that I can't even say, much less spell. Dr. Hamel spoke at one of our meetings and it was like a chemistry lesson. But it was fascinating! This therapy was designed by a lady in Pennsylvania (outskirts of Philadelphia, I believe) named Dr. Patricia Kane. (That's what "PK" stands for.) Good luck finding anything about her on the "internets." If you Google "Pat Kane," you get this weirdo musician guy who has written a book. If you Google Patricia Kane, you get an actress! However, I did finally find the website for her clinic. But there really isn't much information about her treatment there.
Anyway, there are three elements in the treatment. One is folic acid. The second is the one I can't say. The third is Glutathione, in which many autistic children are severely lacking. One web site calls it your body A.I.D. That stands for Antioxidant Immune system Detoxifier.
Guess what that is! Glutathione is our body's natural chelator!! Yes!! Glutathione is one of the elements that helps our bodies rid themselves of toxic metals! Did I mention that Stephanie's hair test showed virutally no traces of metals in it?? Her body is not eliminating any metals.
So, yes, we have started chelating Stephanie. Have we noticed a difference? We think so. We hope we aren't making this up. But we really think we have noticed a difference after only two treatments. And, Hah!! I found the other element that is in this treatment. The internet is a wonderful thing! It is called (are you ready?) "phosphatidylcholine." Right. It is a "phospholipid." Apparently Lecithin is a form of, or synonym of phosphatidylcholine, which I will henceforth refer to as "PC." (You try typing phosphatidylcholine more than once!!) Apparently, this helps break down fats and stuff in the body.
Now, this all goes back to the fact that many autistic children have problems with their "gut!" Stephanie has, since infanthood. She has always had trouble with constipation. When she was a baby, pooping would be so difficult that she would actually spit up while trying.
All of these elements together make up the PK treatment, and they are introduced into the body very rapidly, via IV. I have watched the process. The IV pulls a little blood out, mixes it with the PC, then the glutathione, (one at a time), then pushes them back into the system.
Anyway...we think we have noticed some changes. Stephanie is actually initiating affection at times, and this is something that she has not made a habit of doing. Also, her skin has cleared up a lot. She had real bad eczema on her arms and they are virtually clear. This, we believe, is from the diet.
I apologize for the length of this entry. But I got kind of excited writing it. We have seen results, and we are extremely hopeful. Extremely.
As my banner says, we believe that there is (are?) a cure/cures for autism.
Later on, I'm going to tackle some of the politics in this issue, and that won't be pretty at all. I have been astounded and dumbfounded by what I have read in Evidence of Harm by David Kirby. I am appalled at the actions of some people that I used to have respect for. I am also appalled that some people that I have literally detested, politically (for example Ted Kennedy) have gone to bat for the autistic community and children. I am being forced to rethink my entire political mindset.
*fingers cramping* Hehehe...that's enough for today. Tomorrow we leave for Idaho and Wyoming. I'll update if I can, but there probably won't be another autism installment until we get back.
Thanks for reading, and thanks for the notes and emails that I have received. I sincerely want other parents to know that we don't have to just live with autism. I know that Stephanie is a mild or "high-functioning" case. But we have contact with people who have it worse, and they are seeing results, too.
Grace and peace to all.