For the Parents
New parent reports coming soon!
 Neal Cashion 11 years old:
Neal has been taking the entire protocol for approximately 2 1/2 years. (January 2009) We are verry happy with the changes we see daily. He is growing and developing as he should. For example, his verbal skills have improved dramatically. He no longer speaks in one word sentences and chooses to use full, complete sentences. His articulation is improving daily. We recently put him back in speech therapy and he has learned and incorporated some missing sounds. For example, 'ch' sound. The speech therapist taught him to say 'ch' and he has been able to incorporate it immediately. It is fantastic. He learned it in one session.
Speech seems to be the hardest change though and is the slowest in coming. So don't give up.
Neal's ability to read has soared. This is his favorite area of academics. But he is grasping mathematical concepts. Wow!!! ______________________________________________________
_Ty 17 months old (Nov. 2008)
My son is 17 months old and started the protocol about one month ago. The only thing we have not done is the Focalin and that was because of his age. Dr. Cody has made several statements regarding the use of Focalin possibly not being necessary for all children.
In the 30 days that my son has been on the protocol he has learned three words, can wave, blow kisses, brushes my hair, tries to feed me with a spoon, started to crawl, pushes doors open, goes through the doggie door, and started pulling up a couple of days ago. Last month, Ty had NONE OF THESE SKILLS.
Before I started the protocol, I met with Dr. Garner from Stanford, Theresa Cody from Changing Minds Foundation, and many of the children that were part of her initial study. I also read numerous studies relating to the different components of the protocol. This past week, ECI came to the house for Ty's therapy.. Every therapist was astounded at his progress over the past month and this is before I said anything about starting the protocol. They have asked that I come and talk to their staff about what the treatment protocol because of the remarkable advances in my son's developmental progress.
I have recently ordered books on molecular biology and biochemistry to further my understanding of the chemical imbalances associated with Down Syndrome.
I don't care if people call it a cure, or protocol or whatever. The bottom line is that my son has attained more skills in the past month at a pace that greatly supersedes the 16 months prior. In my readings of the statements regarding the Changing Minds Protocol, I am reminded of the movie Lorenzo's Oil and all the new treatment options currently available for autism. Without parents taking a proactive role in their treatment of their children, where would the treatment currently stand in both of those disorders. I decided that I can either sit back and wait knowing that my son will lose skills as he matures (especially in adolescence) and will likely end up with early onset dementia because of the neurochemical imbalances that slowly eat away at his brain, or I can chose to take a proactive stance to hopefully give him the opportunity to be free. Free to make choices based upon a greater number of options.
This being said, I definitely understand parents being frightened about trying something new. I was too. However, after I read the supporting research and much prayer, I decided that the risks were minimal as compared to the potential benefits. I started one medication at a time to ensure that there were no negative side-effects. If something happened that I didn't like, I could always stop.. However, if I did nothing, I would never know if it could possibly help. Truly, I consider the protocol to be a gift from God.
Good luck to all,
Kimberly Modisette
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_Sam
This is s really useful discussion , especially for me at the moment. I have gone with gingko for the last two years and it has been the difference between Sam being a passive bystander with life passing him by and a little boy who is active and intergated . The hard thing for me is that Gingko is banned in Ireland so I have to sneak it in !! I had been toying with prozac as I do know children who has been on it for a while and it has made a huge difference to them with no apparent side effects . ( they do not have downs though). Focalin I cant get my head around. I saw my child being on the verge of getting a dx of ADHD or ADD. I did everything to ensure he did not have to take that drug and honesty his sensory work turned him completely around!!
Within a week he was sitting and concentrating ( as long as he his sensory work was due before hand) So I am having a hard time with focalin. There is no denying the results with Gingko for Sam so I wish they would just get a move on with the research . It tells me so much can change for Sam and I am as eager for that as Sam is !!!!!
Catherine
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__ Reece 3 1/2 years old (Fall of 2008)
My son, Reece is on 60mg of Ginko. He is 3 1/2 yrs old. We saw results within a week. He started babbling a lot more, increase in fine and gross motor skills (we believe from remembering patterns). Reece used to be real quiet, now we can't even take him to a restaurant because he's babbling so much and so loud! hahaha!
I do believe that Ginkgo helped Reece be more vocal. We are also giving him Prozac (he's on the CM protocol) and I believe that's helped him more than Ginkgo. Reece is doing so much now and there is no doubt that it's because he's on the protocol. Aside from all the wonderful things he's doing, he just seems so much happier...maybe because he's more independent?
Judy
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My son was 13 months when we started him on Ginkgo. He weighed about 25 lbs so we started him on 60 mg. We noticed a difference almost instantly. For example, when we called his name - he turned his head very quickly (before there was always a slight delay from the time he was called and the time he turned). On the 3rd day he finally clapped his hands - we had worked and worked on this. On the 5th day when I went to get him from his nap, he was STANDING IN HIS BED (this was a child that did not even creep or crawl AT ALL previously)! He also picked up a ball using both hands for the first time. The list goes on and on. The biggest challenge with the Ginkgo is the taste. The best "trick" I've found is to grind it up and put it in a small amount of applesauce mixed with sugar, cinnamon, and cereal. I feed it to him first thing in the AM when he's hungry.
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Mary 16 years old (Nov. 2008)
Mary has just finished 13 weeks on Prozac. (fluoxetine) She turned 16 this
month. Before I tell you what we are seeing, I need to tell you where she was developmentally before we started.
Mary had plateaued. We have always run our homeschool by providing an
educationally rich environment and allowing the children a lot of freedom to explore, experiment and pursue their interests. Mary has thrived in this environment. Aside from her required therapy activities, she had a lot of time to interact with siblings, play educational computer games, read, listen to books on tape, make things, play outside, etc. But lately, she was losing interest in being academically involved at all. We were no longer seeing academic progress.
Let's look at math. Back when she was seven I wrote on the web that Mary could do 1st grade arithmetic. And she could. Well. The ND program that we had her on had done a good job of teaching her the preliminary numerical concepts, and she was great at handling basic counting and number manipulation.
However, before Prozac Mary was 15 and still stuck on 2nd grade math. I have used numerous 2nd grade curriculums. We have used many different manipulative systems. I have several math software games. We worked and worked on math.
Mary didn't "get" math. She could memorize a method (for example adding with carrying, even borrowing). She could use her manipulatives to do the problem. She could get an answer, even a correct one. But she simply did not understand what she was doing. She could do double and triple digit adding, and she could count the numbers, but there was never an intuitive sense that she understood what it was about.
If we asked her what 15 + 5 was, she could count and answer "20". Then if we immediately asked what 20-5 was, she would start over and count to get the answer. She couldn't make connections that these were the same problem.
We could work with number lines, and hundred charts, and manipulatives, and coins, and drill and memorization, all trying to get her to "get" the concepts that she was working with. And she could learn a method and consistently do it, but she could never cross apply the knowledge to a different method or problem.
Multiplication was a barrier that she couldn't pass. She could follow directions and do it with manipulatives. We have some that are similar to these http://images-cdn01.associatedcontent.com/image/A7395/73959/300_73959.jpg. She could put five 3s out there and count. But she couldn't "get" that 5x3 is the same as 3x5 which is the same concept group as 15 divided by 3 or 15 divided by 5. To Mary, those were four entirely unrelated problems. Using one of our math software games, she had mastered the concept of doubling. She could rapidly double, in her head, almost any number under 50 and reliably get the right answer. But, she could not do multiplying by 2. They weren't the same in her mind.
Mary had learned to skip count by two (2, 4, 6, 8, …) up to 24. Yet, she could not understand that multiplying by 2 is just like skip counting by two. She could not memorize skip counting by 3. Ruth and Grace had worked with her on skip counting by three for two years. She could not learn it.
We had worked with counting money. To count coins you have to first count by 25, then midstream switch to counting by 10, then switch to counting by 5 and then by 1. This was too difficult.
The result of this math barrier was that I had quit trying. What's the point? Mary had quit playing with math games as well. As I planned the current school year last summer, I dutifully listed 2nd grade math again for Mary. But I didn't expect anything. Instead I planned a cooking curriculum. Life skills.
So, we started Prozac at the end of August. There wasn't much solid change for the first 8 weeks, just an eagerness and sparkle that was encouraging.
One of the first things I noticed was that Mary wanted to work on math. She was eager to sit with me and work problems. The current 2nd grade book had left off last year in the middle of multiplying by three. So we were working, yet again, on skip counting manipulative blocks by three. About a month ago, about 9 weeks after starting Prozac, Mary correctly skip counted by three up to 30. She was elated! She remembered all those hours that her sisters had worked with her on this, and her first exclamation was that she couldn't wait to do it for them.
But, still, that was just rote memorization. What I have been watching for is some proof that Mary can cross-apply a math routine and apply it as a concept. I want to see her "get" it.
Then last week we were counting money. The routine I'm teaching is to count the quarters first, then dimes, nickels and pennies in that order. She often still stumbles on the skip counting transition from one to the next,
but it is getting easier. The problem she had to count was one dime, four
nickels, and a penny. She deviated from the routine, first counting the nickels, then the penny, and finally the dime. Here is how she counted: "5, 10, 15, 20, 21, 31." She had correctly applied a concept rather than following a routine by rote. She usually can't deviate like this, but three months ago it would have been unthinkable.
Then this week we were doing a story problem that came down to this: 3 + ____ = 18. I wrote that down and asked her, "Mary, three plus something is 18. What is it?"
To answer she started skip counting by three. "3, 6, 9, 12." Inwardly I groaned. "No, Mary," I thought, "this is not a multiplication problem. It's an addition problem." But Mary wasn't multiplying. She was cross applying the concept of skip counting to an addition problem. She counted to 15, then 18, and then answered that 3 + *15* = 18.
Ask me again in a few months what we are seeing in math. I hope we are moving from math as method and rote memory to math as concept. The second half of this math book has pages and pages of mental math, expecting use of mental shortcuts for working problems in your head. I'm rather shaking in my boots on this, because this is pure concept. I'm tempted to bail out and go back to one of the other curriculums that do more rote drill. I'll tell you in a few months what is happening.
Another area that has changed for Mary is the social. During last spring and summer we saw a behavior that was becoming increasingly worrisome. My normally social Mary would go somewhere alone and jabber and giggle and act to herself-- loudly. Sometimes it would be outside, sometimes shut into the bathroom or her room. Sometimes it was "alone" in a roomful of people.
It did not seem like self-talk.
http://www.altonweb.com/cs/downsyndrome/agetalk.html I know that normal children do imaginary play as they grow, but this just felt different.
What Mary was doing was weird and socially inappropriate. She would lose her surroundings and get lost in imagination. And she would jabber loudly in words that were not understandable, possibly because she was talking too quickly to enunciate. I think it was either stimming or compulsive behavior. It may have been early signs of dementia. She strongly resisted being interrupted.
It may have been that for the first time in her life, Mary did not have a younger sibling at her same cognitive level. She has, one by one, seen each of four younger siblings first become her best playmate, and then outgrow her. She has been increasingly left out of the more complicated play activities that they engage in.
Whatever the reason, Mary was increasingly disappearing and engaging in jabbering, acting, and giggling to herself. Many times a day I would hear her, go find her, and attempt to engage her in something else.
This weird behavior has almost ended with the Prozac. A month ago (after 8 weeks on Prozac) I thought the behavior was lessening. Now, after 13 weeks, I am sure. She almost never does this anymore. Maybe once a day, or maybe not at all in a day. Instead she goes to the bookshelf and finds a book to read. Or she goes to the computer and puts on one of the old standby educational games we have it loaded with (games that she had not played with for years, they had gotten too hard). Or she practices her sign language. Or she cleans her room (!!)
Mary is just over 100 pounds, and takes 10 mg of fluoxetine per day. She had already been taking gingko for the last couple years, takes an Omega-3 oil supplement (but I haven't switched to Body Bio yet), she gets choline and folinic acid in her Nutrivene-D, but we don't give phosphatidylcholine or extra folinic. She does not need Focalin. She takes a thyroid supplement.
We have seen zero negative results so far. The only physical change of note is that she commonly takes an afternoon nap now, where that was infrequent before.
Miriam
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