We seem to have an explosion of speech lately, so when Lucas answered "Scooby-Doo," when asked what he wished to be for Halloween, the mountains of hand-me down costumes from the boys, trips to 4 different stores, ordering online and paying double because of shipping and handling wasn't about to stand in the way of my boy and his best dog!
I've said it a million times before and it is more true now than ever, if I were reacting to illness and delay with everything we are doing (and thinking about doing), I would be completely overwhelmed. Ironically, since all of the decisions we are making are framed with the perspective of expecting achievement (and dare I say overachievement), there is more than enough energy; positive energy. Now if only there were a few more hours in the day!
First I want to give you an update on the past seven months and some evidence that we are on the right track. Back in April I went to the Institutes for the Achievement of Human Potential. Before I left I took Lucas for his bloodwork to his usual two girls at our usual clinic. These ladies are so wonderful with him especially since finding his teeny tiny vein and then waiting until his blood trickled out had been a nerve wracking experience. If it didn't produce so much valuable information, I could never take him. In any case, that round of bloodwork was the first time Lucas blood analysis revealed his body was balanced. Each and every value was within normal range.
As soon as I returned from the Institutes we began our running program in earnest, creeping and crawling, hanging, and anything else we could have Lucas do to build his strength and increase his oxygenation. Patterning was frequent and consistent over the summer as well as a cognitive program that was kicked up about 10 notches. We have had an awesome 6 months. Although I have been keeping notes about Lucas's progress and things I had seen, the information is a result of my observation - easily considered to be lacking objectivity (though I honestly think I am more specific in my judgement of Lucas's development). It wasn't until 2 weeks ago that I realized I had actual proof.
Lucas had been due for bloodwork over the summer, but with finding a new practitioner, we waited until the appointment had been scheduled. We went to our usual girls and Lucas jumped into my lap to begin the process. After applying the band to his arm, the one tech turned to me in amazement and asked me what I had done - apparently his teeny tiny little hiding veins were now large and prominent in the crook of his elbow. The usual 10 minutes it took to fill three viles took only seconds as the blood rushed out as powerfully from Lucas as it would you or I. I considered her question, and I knew what I had done. Lucas had been in training, cardiovascular training, and the result was a more efficient and capable system.
I couldn't wait to get home and look at my notes. The following progress had been made in the same 7 month period of metabolic balance, running, crawling, creeping, patterning, and cognitive programs:
1. Gross Motor skills:
- In May Lucas was starting to run, the quality of the running was that which would be expected of a toddler. It was mostly a fast walk accompanied by flailing arms. As of this posting, Lucas running is perfectly reciprocol with a little "hop" in his step. He jumps, bunny hops, and thinks it's fun to stand on one leg. This progress in 7 months is staggering considering how long it took him to progress to the point he was at last May.
2. Fine motor skills have always been very good, but we started a printing program with him and he is independently cutting on lines and working on two part zippers. Almost independent with dressing.
3. Speech:
- In addition to the programs and the balanced blood work we did add Curcumin, but we are getting whole sentences spontaneously as well as answers to questions and addressing friends by name. He yells, sings and has an awesome sense of humor. We went for our run and half way around he stopped, looked at me and said "I want to march." So we did.
I am anxiously awaiting the end of November when the traditional therapists must evaluate him according to the standardized evals. Without looking them up I know the progress is significant. It makes me wonder how any critic of the methods could legitimately say Lucas would have developed that way regardless. It was too many coincidences in the same small window of time.
So, with all of that in mind, I feel as though we have no sooner reached a rest point point along the road and the new path rolled out before us - and somehow the energy and excitement necessary to begin. We met with the new practitioner today, absolutely amazing. He did not change anything Lucas was on but added things to address the specific issues of speech and linear growth...my two biggest concerns. The two big cycles that can be devastated by mutations and imbalances (SAM and Folate cycles) have been focused on to date with excellent results. There is a third cycle, the Methylation Cycle that balances things like methionine, homocycteine, TMG, etc. as well as the critical outputs to the cycle such as DNA, RNA, neurotransmitters, adenosine and uric acid. Any parent reading this knows the mind blowing possibilities one or more mutations affecting this cycle is likely present in our children.
I have to just add here that it is so discouraging that all of this research was originally done for children with Down Syndrome and somehow the DS community has rejected it as junk science. I hear over and over again that "vitamins" are a waste of money and the concept of "Diet" is nothing more than calorie restriction. Each bite of food, each delicate combination and composition of vitamins / nutrients / minerals / enzymes, etc has specific effects on health, cognition and behavior. The community of parents with Autism picked it up and ran with it and now are having stellar results with their children. There is a whole host of organizations and sponsored conferences organized around gaining physician support. The treatment of Autism is lightyears ahead of Down Syndrome, and the research was done for us.
I have much learning, studying and understanding to do post haste, I have to digest this information and begin a new protocol, carefully adding, monitoring and adjusting until success is noted. And it will be noted. I can't wait to begin, because it is the starting point for our new path.
My son's development is an inescapable dichotomy, and as a therapist this fact eluded me - as a parent it can not be overlooked. My son can read and organize presidents, vice presidents, inventors, geographies, life cycles of animals, complete simple addition and subtraction, carry a basket through the supermarket with a written list and find the items, manage a routine, remember and generalize skill and learn - in some cases - outlearn his typical peers at four years of age. These brilliant skills will not be cultivated or even recognized in a classroom of 15 other students who are able to fully communicate ideas, albeit about Sponge Bob or nursery rhymes.
I will find myself trying to convince a teacher whose job it is to teach a class (of course teaching to the "average" and dealing with the outliers) that my son who can not find the words as quickly as his peers, or make his needs known as clearly - is actually capable beyond the average expectation, probably well beyond the highest outlier. My son who loves to learn more than anything else will be asked to respond, demonstrate and prove himself. How long will it be before his desire to learn and know take a back seat to an idea that he isn't as good as the other students? I simply will not allow it.
I have said before, on graduation day with a full diploma and an entrance to a college Lucas earned, the timeline of when he achieved skills will not matter and now it's time to put my money where my mouth is. I have decided to homeschool Lucas next year. Our focus will be on a Montessori approach cultivating his love of things like geography, science, and history. We will continue to work our IAHP program with increased intensity, frequency and duration (can't wait to post a pic of the massive 18 ft. monkey bars in my livingroom!) We will introduce music lessons, art classes and build Lucas's confidence and self concept while we watch his speech blossom.
At this point it is a one year plan, that is likely to change based on what happens. All I know, is that when Lucas does enter a classroom it will be as a peer, as a confident and self assured student, and an accomplished outlier.
Anyone in this brilliant community of parents, educators and teachers who have ideas or resources that can help me ramp up my knowledge base quickly, I would greatly appreciate it!
2. Fine motor skills have always been very good, but we started a printing program with him and he is independently cutting on lines and working on two part zippers. Almost independent with dressing.
3. Speech:
- In addition to the programs and the balanced blood work we did add Curcumin, but we are getting whole sentences spontaneously as well as answers to questions and addressing friends by name. He yells, sings and has an awesome sense of humor. We went for our run and half way around he stopped, looked at me and said "I want to march." So we did.
I am anxiously awaiting the end of November when the traditional therapists must evaluate him according to the standardized evals. Without looking them up I know the progress is significant. It makes me wonder how any critic of the methods could legitimately say Lucas would have developed that way regardless. It was too many coincidences in the same small window of time.
So, with all of that in mind, I feel as though we have no sooner reached a rest point point along the road and the new path rolled out before us - and somehow the energy and excitement necessary to begin. We met with the new practitioner today, absolutely amazing. He did not change anything Lucas was on but added things to address the specific issues of speech and linear growth...my two biggest concerns. The two big cycles that can be devastated by mutations and imbalances (SAM and Folate cycles) have been focused on to date with excellent results. There is a third cycle, the Methylation Cycle that balances things like methionine, homocycteine, TMG, etc. as well as the critical outputs to the cycle such as DNA, RNA, neurotransmitters, adenosine and uric acid. Any parent reading this knows the mind blowing possibilities one or more mutations affecting this cycle is likely present in our children.
I have to just add here that it is so discouraging that all of this research was originally done for children with Down Syndrome and somehow the DS community has rejected it as junk science. I hear over and over again that "vitamins" are a waste of money and the concept of "Diet" is nothing more than calorie restriction. Each bite of food, each delicate combination and composition of vitamins / nutrients / minerals / enzymes, etc has specific effects on health, cognition and behavior. The community of parents with Autism picked it up and ran with it and now are having stellar results with their children. There is a whole host of organizations and sponsored conferences organized around gaining physician support. The treatment of Autism is lightyears ahead of Down Syndrome, and the research was done for us.
I have much learning, studying and understanding to do post haste, I have to digest this information and begin a new protocol, carefully adding, monitoring and adjusting until success is noted. And it will be noted. I can't wait to begin, because it is the starting point for our new path.
My son's development is an inescapable dichotomy, and as a therapist this fact eluded me - as a parent it can not be overlooked. My son can read and organize presidents, vice presidents, inventors, geographies, life cycles of animals, complete simple addition and subtraction, carry a basket through the supermarket with a written list and find the items, manage a routine, remember and generalize skill and learn - in some cases - outlearn his typical peers at four years of age. These brilliant skills will not be cultivated or even recognized in a classroom of 15 other students who are able to fully communicate ideas, albeit about Sponge Bob or nursery rhymes.
I will find myself trying to convince a teacher whose job it is to teach a class (of course teaching to the "average" and dealing with the outliers) that my son who can not find the words as quickly as his peers, or make his needs known as clearly - is actually capable beyond the average expectation, probably well beyond the highest outlier. My son who loves to learn more than anything else will be asked to respond, demonstrate and prove himself. How long will it be before his desire to learn and know take a back seat to an idea that he isn't as good as the other students? I simply will not allow it.
I have said before, on graduation day with a full diploma and an entrance to a college Lucas earned, the timeline of when he achieved skills will not matter and now it's time to put my money where my mouth is. I have decided to homeschool Lucas next year. Our focus will be on a Montessori approach cultivating his love of things like geography, science, and history. We will continue to work our IAHP program with increased intensity, frequency and duration (can't wait to post a pic of the massive 18 ft. monkey bars in my livingroom!) We will introduce music lessons, art classes and build Lucas's confidence and self concept while we watch his speech blossom.
At this point it is a one year plan, that is likely to change based on what happens. All I know, is that when Lucas does enter a classroom it will be as a peer, as a confident and self assured student, and an accomplished outlier.
Anyone in this brilliant community of parents, educators and teachers who have ideas or resources that can help me ramp up my knowledge base quickly, I would greatly appreciate it!
