National Down Syndrome Awareness Month - Eve

I have been working on some projects for October, National Down Syndrome Awareness Month. I have become engrossed as of late in the history of "Down Syndrome" and far we have not come. Despite our knowledge of the extra chromosome and what it can mean, despite deinstitutionalization and integration, despite discussion of "tolerance" and "acceptance," I have found a time machine of sorts.  Dr. Langdon Down's very first published position paper to the governing medical body. 


In it, he writes that it is his belief that every class of idiot can be directly linked to an ethnic group based on their physical appearances. He notes the "Ethiopians" and "Malaysians," but reserves his medical brilliance for the group of idiots - the largest group - of Mongoloids. He describes their ability to mimic, their demeanors to be pleasant, and their skills to improve when worked on. He describes their common deficits (and relates them back to an ethnic group that clearly was not thought well of at the turn of the twentieth century).


As we enter October we will be swathed in pink because it is also Breast Cancer Awareness Month which celebrates another group of people who were discriminated against and thought to be mentally "substandard;" women. The difference is that we rose up, demanded equality and fought for it. Who will do this for our children? Who will demand equality and changing mindsets for a group of children many hope do not exist in the future?


And forgive me, those of us who rally around the "special needs" events of this month; the awareness walks - that only members of our community will attend, the special events for special people that give us so much comfort and security, and the support networks that seek to create and provide more special options designed to keep our kids special for life, what are we doing?


Why are we not inviting physicians and medical practices to lectures and seminars on things we know to improve health and development in our children? Where are the articles and blogs demanding equality for our children? Is it enough that our children be "tolerated," or "included?" 


We've not psychologically moved beyond the doors of the Asylum for Idiots. Are we so grateful that our children are tolerated and accepted that we fear opening our mouths? That we fear being wrong so as to not stand up and fight for our children's rights? 


There is outrage across the country of young people being bullied to the point of taking their own lives, and rightly so, but is the bigotry and vitriol aimed at a group of children who dare enter this world not a reason to stand up as well? 


I have copied Dr. Langdon's Groundbreaking first medical paper for you to read, it isn't that long. As you are reading the very words he chooses and the obvious prejudices of the day he references, ask yourself are things ANY different today? Do people think ANY differently today? If they did, there would be 92% more people born with Trisomy 21 every year. 


Make this awareness month count.


http://www.neonatology.org/classics/down.html

Walking the Walk

I love this photo, it really epitomizes our life with three boys! Believe me I have tons of these as they take over my photo booth app!

I've been away for a bit trying to get into the groove of this new school year. Noah's in fifth grade and so many new things coming his way, JV baseball, soccer and student council speeches, all of these on top of maintaining grades and managing the increased expectations around the house. Ryan (with whom I can relate all too well!) has to adapt to the increased demands of second grade, it's no longer enough to be able to read, but apparently now you have to go slow enough to actually know what you read. This is very difficult when you have 74 different ideas all competing for time - again, I know exactly where he's coming from! And of course, trying like crazy to get all of Lucas's programs done between the hours of 8:30 and 2:30, so as soon as the boys walk in the door I'm theirs.

Through all of this I can't deny that I move through experiences with Noah and Ryan with an eye toward Lucas. How will he manage a heavy backpack full of books? Will he be able to play baseball and soccer? How in the world will I have enough energy to do what must be done? If I don't, how do I explain to my boys that Lucas indeed was on the right path, but I was too tired? The nice thing about being busy is that you have very limited time to dwell on these thoughts, but they poke in none-the-less.

On top of these questions, several moms I have come to respect and admire on this journey seemed to be having a crisis of faith as well. Two friends have had to deal with hospitalizations of their little ones because of viral infections that led to severe breathing problems. One mom whose daughter is older was questioning whether she should "adapt" her dreams for her daughter, and another is questioning whether to try the educational route she believes in her heart to be possible if it will end up with her son being moved to a different school anyway if it doesn't work.

I have no no great insights to lessen the burden on these moms, I can only say that I truly know the weight of these things on their heart and soul. It is that very weight, and fear of it, that gets me crawling the last 30 meters, or dragging out the cutting board and vegetables when I feel like ordering out, or forgetting about the last reading session of the day because I can barely keep my eyes open. It is also what gives me some clarity.

Until Lucas proves he can't, I have to assume he can. I have to let him go to regular school and give him the chance to carry the backpack, try out for the team if he wants, and run for student council. I have to let him follow the path I believe possible regardless of what might or might not happen. I have to let him have a shot at forming friendships and relationships wherever he goes to school and if we have to make changes somewhere down the road, I have to believe he will do it again in a new environment. I can't freak out when a parent has the poor judgement to send her kid to school whooping (Seriously!), the bottom line is that our world is filled with things to which Lucas will be exposed. I can't worry about the next time he gets sick, because inevitably, we all get sick. I have to take solace in the fact that he is very healthy and if he succumbs to an infection, it will not be as devastating to his system because it is strong.

I am a bit of a control freak (I'm sure you didn't know) so when Ryan is reading something for the third time at the speed of light, I get frustrated trying to get him to slow down, I think about the next couple of grades and how demanding they are and wonder how in the world I'll get him to slow down enough to get through. I find myself getting annoyed with Noah because he takes on so much that it leaves little opportunity for set schedules, I find myself slipping into the bad habit of threatening loss of a baseball game or soccer game if this craziness continues..or worse yelling that we're late again at the top of my lungs. I wonder what will happen to him if he doesn't learn to say no and realize he has limits.

Maybe next year I should just keep him out of the extras so there's no choice but to focus on homework. Maybe I could not allow Ryan to do any of the other 74 things he wants because I'm afraid he wont do well in school next year. Then it hit me, that's ridiculous. I can't keep them from trying, even if it doesn't end well. I can't tell Noah not to run for student government because it might boil down to a popularity contest and if he doesn't win he will be upset. I can't control Ryan's every move to help keep the 74 other ideas from interfering with his reading.

Why is it any different with Lucas?

What's the worst thing that can happen? I give him my love, support, and encouragement and there may be obstacles - or walls - we need to work around or change direction, how is that any different from any other child?

I think the only person I need to try and manage is me, I need to realize that each son of mine is going to grow up and have a wonderful life - a life of their choosing. After all, Noah my decide to run for President someday, Ryan might be a wildly creative author, and Lucas, well - we'll just have to see which one of his gifts he'll decide to pursue.

Lucas and His Inventors

http://www.youtube.com/watch?v=vB0derpkMoQ

I just wanted to share a short video. Lucas started a new knowledge program, inventors, 4 days ago in earnest. Today he readily identifies them, reads their names and inventions well enough to match them without any verbal prompts, and as you can see in the video, he is very aware when one is not asked and who exactly it is!

There are so many hopes being raised by the new cognitive enhancing drug trials, and I truly hope they may provide benefit to those who choose to use them. I believe that given what we know about poor dendritic formation (and neuronal death), the atrophied (or dystrophied) appearance of the hippocampus, and phenotypical symptomology of poor memory, difficulty learning, and poor generalization of skills is true, and it develops over time...from birth.

If a child has developed cognitively, without intervention, until 8 or 9 years of age - I simply do not know how a medication can undo what has been done, how a drug can re-develop neurogenesis. I can fathom future potential being affected, but what about the foundational skills that have all been formed atypically?

I know it is very simplistic, but we have been doing "storage-retrieval-generalization" activities daily with Lucas since he was an infant. That combined with proper antioxidants and neurologically supportive..natural supplements have brought us to this point in time, which is all I am able to talk about.

At age four, I see Lucas's ability to learn brand new concepts, remember, and generalize them, becoming quicker, more efficient and more accurate. He remembers minute details, is able to read names and new words after 1-2 exposures. For this I have no explanation other than what the Institutes have been saying for decades.

The brain grows by use. The higher the frequency, intensity and duration, the better the results.

I can not say for certain exactly what factors have come together for Lucas to learn at this rate, but I can say for sure that the medical community who dismisses our efforts as futile and takes the position that "Lucas may have developed that way regardless" are blinded by their own agendas. If we had lowered our expectations for Lucas and submerged him in environments which accept certain limitations as fact, he most certainly would not be able to do what he does today ..or has the potential to do tomorrow.

Curcumin

"Recent studies have demonstrated that curcumin has a wide range of beneficial pharmacological effects, including anti-inflammatory [3], antioxidant [4], antiviral [5], antiangiogenic and antitumori- genic [1] effects."

http://www.gotdownsyndrome.net/Jiao_2006_FRBM.pdf

Curcumin is the natural yellow product extracted from the Indian herb turmeric. It is currently used as part of many different protocols for our children that makes it's pure benefits unclear (in my opinion) because it is combined with other non-natural components such as psychotropic drugs.

Curcumin has properties of an iron chelator which is huge in the population of our children who tend to have high iron loads, as Lucas does. Things like cancer and tumor growth need a good supply of iron, it is their feeding source. In fact, the attached article demonstrates the ability to track development of cancerous tumors and other diseases by monitorring iron loads over time. Allowing excess unbound iron in the system will lead to devastating results. 

Curcumin impairs tumor and cancerous cell growth - both of which need iron to grow, in addition it is an antioxidant and free radical scavenger.

Are any of you using curcumin as a supplement? What reasons did you decide to do so?

A Summer Rose

A last minute decision to run an errand - on an unusual day for errand running - led me to a beautiful Summer Rose that I otherwise would have missed. I know it's blossom will be spectacular simply because of the love with which it was being cultivated. This journey has taught me to keep my eyes open for miracles, they are everywhere.

School is Starting (Along with cold and flu season)

Tomorrow is a very exciting day, Lucas has his preschool conference with his teacher and gets to see his room so he's already to start on Tuesday. Noah and Ryan, although they will tell you they are not, can't wait to go back and see everyone they have been missing through the summer. You know - telling stories, hi-fiving, sharing pencils, hanging out in the locker rooms, around the drinking fountain - yeah, you know where I am going with this! There's a reason tissues and antibacterial wipes are on the school supply lists.

Last year was our first full year following our anti-illness plan with stellar results. All the boys made it through unscathed - including Lucas. (Ironically I was the only one who got really sick right around Christmas time - it was fabulous.) Although I am certainly not in a position to recommend any course of treatment, I found that providing the whole family with increased vitamin D, good probiotics, elderberries (powerful antivirals - I boil them down in a touch of water and stir them into yogurt!), natural multivitamins, bioplasm cell salts and krill oil kept the boys on track.

The other component to our strategy was monthly visits to our pediatric chiropractor. A few energy releases later and the kids were clearing any congestion that may have been present. My oldest son woke up with a pretty bad ear infection in January, after seeing our chiropractor the first day he couldn't believe how pain-free he was in the car on the way home. That night he slept soundly, and that was the end of it.

The real evidence for me was the boys bringing it up today - "Hey mom, when are we going to start our plan?" We have all set the goal for a second consecutive year with no illness. None of the boys have been on antibiotics for years, I can't even remember when.

I even practice the old wives tales, I figure if chicken soup helps a cold, perhaps it can help prevent one. Our family eats a variety of organic soups 4-5 days of the week in the winter - mostly because I can make it early in the morning and it's ready whenever someone needs to eat around homework, sports, and meetings. I have become very crafty at adding nutritionally dense ingredients with little resistance from the kiddies - mostly because they have no idea!

My question for you is what strategies do you employ? What "resolutions" do you have for this new school year, and what is your action plan?

I can't wait to hit the ground running - it's going to be a good year!