The DAN! Doctor

Whew -- what a week! I am mentally and physically exhausted from it. Thank goodness today was a holiday so we had an extra day to recover.

I got a call on Wednesday afternoon that the DAN! doctor (the only one in Tampa) had a cancellation on Thursday and therefore had an unexpected opening. I jumped up for joy! Originally, we could not get in to see him until October so this was a nice surprise. Being the only DAN!/autism biomedical doctor in the area, his schedule stays pretty full. Needless to say, we jumped on the appointment and went to see him on Thursday. Unfortunately, Charlie was quite tired after his last day of preschool party and running around with me. So, he was definitely on the crabby side when we got to the doctor's office. . . and Miss Addison just wanted to stay in the waiting room with all of the fun toys and movies. I thought they were going to kick us out before we even had a chance to meet with the doctor.

Dr. Berger (or Dr. David as he likes to be called) was very nice and very thorough. He asked lots of questions about Charlie's medical background and his behaviors. We discussed his current supplements, all of which he approved. He did want Charlie to start having nightly Epsom Salt baths with 2 cups of Epsom salt (we were previously doing every other night with 1 cup of Epsom Salts). He also wants us to increase the Cod Liver Oil to 2 tsps a day (we have been doing 1 tsp). He ordered some tests for Charlie, an Organic Acid Test (or OAT test -- this is a urine test) and a comprehensive stool analysis to test for bacteria, yeast, etc. From what I have read, these are the standard initial tests. In fact, I had already ordered some kits from Great Plains laboratory and planned on sending the samples in myself per the 12 week action plan on autismactionplan.org. Dr. Berger and I also discussed Methyl B-12 shots. I have been reading about this a lot. It is a very popular treatment for ASD, and is very safe. Parents are reporting lots of improvements, including increased language, better eye contact and awareness. I admit I am a little nervous about giving Charlie shots, but when he showed me the needle and explained the process to me, it really seems pretty easy and harmless. The needle is so small, and you give them the shot in the fatty part of the buttock so most kids don't feel it or feel very little. In fact, on one of my yahoo groups, the parents report they give their kids the shots at night and they don't even wake up. If there is a pain issue, there is some numbing cream you can apply before the shot so the child won't even feel it. The goal is to inject into the fat area as this will allow for slow absorption over three days as opposed to injecting into the muscle where the entire amount would be "used up" by the body within a day. Charlie will start out getting one shot every three days. The pharmacy will ship them to us this week (they come all ready to go, you just refrigerate and bring to room temp before administering), so we'll likely start the shots this weekend. We have a follow up with the doctor in late June when the lab results should be in and we can make some determinations about treating for yeast and whatever else the labs may show.

For information about Methyl-B12, check out Dr. Neubrander's site at http://www.drneubrander.com/dev/index.html. Dr. Neubrander pioneered the use of Methyl B-12 as a biomedical treatment for autism and is a big force behind HBOT treatment as well, which also has rave reviews but is extremely expensive. Methyl-B12 is very safe since it is a water soluble vitamin, and therefore, any excess in the body is eliminated through urine. Another plus is that it's only $3 per shot, so pretty reasonable, and as Dr. Berger said, a great place to start biomedical treatment.

Charlie has been doing well. He has had some more bursts of temper, but they are quick and usually over almost as soon as they start. He has been very frustrated the last few days because Adam and I have been making him use his words to request things. He has gotten into the habit of just reaching up and taking things. We try to make him say what he wants and/or hold up the item and model the word first for him to repeat. Sometimes he says the word, sometimes he doesn't. This is an exercise in patience for me. It is extremely frustrating because I know he KNOWS what the word means, and I know he can say the word. . . it's like he can't get the word out at times or just doesn't get the whole idea of requesting or using words for communication. He continues to be echolaliac, but he does use it in the right context on many occasions. For example, the other day we were talking with our neighbors and Adam left to go get something to drink. Charlie got a little upset to see his daddy walk away and said to himself "He'll be right back." Of course this is what I have said to him before, but he often does this, where he will repeat the phrase in the right context. This leads me to believe that he does understand the words and what is being said to him. It will be interesting to see how this resolves when he starts ABA therapy . . . which he starts tomorrow! He will be in therapy for 4 hours tomorrow. Whew!

I just finished reading Temple Grandin's book Thinking in Pictures. This was much better than her first book Emergence and is a fascinating read into her mind as a person living with autism. She discusses in detail how she is a visual thinker, explaining her virtual DVD catalog of memories and how she can rotate something, move parts, etc in her mind. She does not think in language, but in pictures. She has a hard time understanding non-autistic verbal thinkers and how they can't "see" what she sees in blueprints and construction. She practices everything in her mind and designs all of her livestock equipment in her head. She can rotate the picture and see every angle of the equipment in her brain. She also remembers things in pictures. She also discusses her sensory issues and a lot of the sensory problems ASD people have, as well as their issues with socialization. She had to be taught social cues as she was oblivious to these with the one exception of tone of voice. She also had to be taught right from wrong and keeps lists in her mind of everything she has learned so now she can function socially. It is an absolute must read in my opinion for anyone who knows or has a loved one on the spectrum. I don't know if Charlie is a visual thinker yet or a math/musical thinker. . . or what is going on in his beautiful little head, but Grandin explains that all autistic people learn by association. It is things like this that will hopefully help us to identify and appreciate our little boy.

This article was posted on one of the yahoo groups I am a member of. I really love it as too many times, the negative aspects of autism are the focus. These are all traits for which everyone of us should aspire.

Top 10 Terrific Traits of Autistic People

If you're sick of hearing about all the "deficits" challenging people on the autism spectrum, join the club. But for every down side to autism, there seems to be a positive -- an unusual trait that rarely appears among the "typical" community, but shines out among autistic folk. These plusses are well worth celebrating.

1. Autistic People Rarely Lie
We all claim to value the truth, but almost all of us tell little white lies. All, that is, except people on the autism spectrum. To them, truth is truth -- and a good word from a person on the spectrum is the real deal.

2. People on the Autism Spectrum Live in the Moment
How often do typical people fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? People on the autism spectrum truly attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.

3. People with Autism Rarely Judge Others
Who's fatter? Richer? Smarter? For people on the autism spectrum, these distinctions hold much less importance than for typical folks. In fact, people on the spectrum often see through such surface appearances to discover the real person.

4. Autistic People are Passionate
Of course, not all autistic people are alike. But many are truly passionate about the things, ideas and people in their lives. How many "typical" people can say the same?

5. People with Autism Are Not Tied to Social Expectations
If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for people with autism, social expectations can be honestly irrelevant. What matters is true liking, interest and passion -- not keeping up with the Joneses.

6. People with Autism Have Terrific Memories
How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.

7. Autistic People Are Less Materialistic
Of course, this is not universally true -- but in general, people with autism are far less concerned with outward appearance than their typical peers. As a result, they worry less about brand names, hairstyles and other expensive but unimportant externals than most people do.

8. Autistic People Play Fewer Head Games
Who was that woman, and why were you looking at her? I know I TOLD you I didn't mind if you went out, but why did you believe me? Most autistic people don't play games like these -- and they assume that you won't either. It's a refreshing and wonderful change from the Peyton Place emotional roller coaster that mars too many typical relationships!

9. Autistic People Have Fewer Hidden Agendas
Most of the time, if a person on the autism spectrum tells you what he wants -- he is telling you what he wants. No need to beat around the bush, second guess, and hope you're reading between the lines!

10. People with Autism Open New Doors for Neurotypicals
For some of us neurotypicals, having an autistic person in our lives has had a profound positive impact on our perceptions, beliefs and expectations. For me, at least, being the mom of a son on the autism spectrum has released me from a lifetime of "should" -- and offered me a new world of "is."

"I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin." ~ Jerry Newport