When I first had my daughter M, I was given a few resources for Down Syndrome. They were mostly the Non-profit association and Parent Forum type. I was approached by a support person from the National Association of Down Syndrome (NADS) in the hospital after M was born. They let me know about Early Intervention and all of the therapies I’d need, so I utilized all of the ones I was given. I also joined a T21 parent support forum, and that was very helpful and comforting sharing with all of the other parents with a child with DS. I heard about some multivitamins for Down Syndrome from my sister-in-law, and I read about some of the parents on the forum using these supplements. There was a lot of brouhaha on the forums about using these vitamins. I listened to the arguments for and against and decided to try them. That, and some fish oil as those were highly recommended by the parents anyway. Honestly, I did not find any changes from the multivitamin, but I did see a little more vocalization from the fish oil. For some reason, though, I stopped giving it to her.
I did not do anything supplement-wise for years. Not until I started seeing symptoms in my daughter that fit the description of Autism and I decided to try some of the things that worked for Autistic children. M regained her eye contact with Vitamin D, and the fog lifted from the high potency multivitamin and the gluten, casein, and soy free diet. One of the amazing things that also occurred with the change in diet is the IgA antibody levels changing. We had stool testing done which revealed that her IgA antibody levels wer extremely low. After a couple of years on the diet, I had the testing redone and her levels were well within normal. She also was finally able to get sick and mount immune responses after the change in diet. All of these things were normalized again.
Having experienced what I have, and after having seen listened to other parents, I know that much can be done for our children. Some resources are better than others, and there are plenty of ABA, Early Intervention, speech, ot, pt resources out there to choose from. This blog post will give some of my favorite resources that are not so mainstream. So without further ado, here are some of my favorites.
Yes, something can be done to improve the lives of those with Down Syndrome. There are multivitamins to balance biochemistry, specific nutrients to alleviate inflammation and help with plaques in the brain. I have a couple of sites here for biochemistry information, and I also recommend some Facebook groups.
Just and FYI, though, I am not recommending or supporting any one protocol. This is just information for you to use and to discuss with your physician. I am in no way a doctor, don’t play one on t.v. and wouldn’t want to be one if someone paid me. Blood! Yuck!
Down Syndrome Options
Down Syndrome: A Day to Day Guide
Super Down Syndrome
Changing Minds Foundation
Riverbend Down Syndrome Association
Down Syndrome and TNI Support Group
Down Syndrome: What You CAN Do (written by a young girl in her twenties along with her mother.)
The Biochemistry of Down Syndrome
Talk About Curing Autism
Thinking Moms Revolution (this one has blog articles discussing resources as well as life lessons. It also discusses challenges and political issues we families with Autistic children face on a daily basis.
Cutting Edge Therapies for Autism
Dietary Resources for Autism:
Gut and Psychology Syndrome
Specific Carbohydrate Diet
Body Ecology Diet
Autism One is a wonderful online resource for both Autism and Down Syndrome. If you go through the site, you will come across videos for both issues discussing so many treatment options, biochemistry information, just about everything you’d want to know about Autism. There is also now information about Down Syndrome since anywhere from 5-33% of the Down Syndrome population is also dually diagnosed with Autism. In May every year, the weekend before Memorial Day, there is an Autism One Conference in Chicago for five days. It is a huge resource, and the conference is always dirt cheap. It’s truly a blessing for anyone who goes. Thursday is usually the Down Syndrome track day, and Wednesdays are the culinary days. Go to http://www.autismone.org for details for the next conference.
Then there is the issue of funding. The Talk About Curing Autism site lists ways to get therapies covered by insurance. But then a lot of things don’t, which is why grants are something to look into. I am one of many coauthors of a book called Evolution of a Revolution: From Hope to Healing. Purchases of this book go towards the TEAM TMR grant for families with children with Autism and related health issues. If you’re not sure if you qualify, go ahead and apply anyway. It is not an organization made up of unaffected philanthropists. TEAM TMR and the Thinking Moms Revolution are just made up of moms (and one dad) who “get it!”
I hope this helps you. In the meantime, I hope to get a separate blog up and running with an exhaustive list of resources. This list is just a scratch on the surface. There is so much more out there. Things like Homeopathy, Energy Work, Nutritional Therapy, MAPS doctors, and the list goes on. The first stop for Autism that I recommend is to go to TACA. That will guide your next moves, get you in touch with other parents and get the ball rolling. You won’t believe how much there is out there for your child.