My hope is that new and expectant parents will find this blog when they need it most. I can't imagine what would have happened to our journey, how irrevocably altered it would have been, had I not been lucky enough to stumble upon some incredible information in the very earliest of days. Indeed, although traditional practitioners formally put very little credence into our methods, they are off-the-record impressed with our journey and in fact believe that starting as an infant gave us an advantage rather than waiting to see what would unfold. It is my opinion that if you wait for a problem in our kids they will come, and then it may be too late to intervene.
The following are absolute must reads, as quickly as you can get them and read them - they will completely change the perspective with which you think about Down Syndrome and start you on an amazing journey of wellness and achievement.
1. BEFORE YOUR BABY'S NEXT FEEDING, READ THIS ARTICLE!
A speech pathologists outlines a theory as to why the classic "open mouth, tongue out of mouth, jaw protrusion" image we all see when we think of adults with DS is preventable with a simple positioning change when we nurse or feed our babies. As an OT it made clinical sense to me and I implemented it throughout Lucas's first year. You can scroll down to see pictures of him today, none of the aforementioned traits are evident and indeed all of his oral motor structures are formed perfectly, even his teeth alignment. He has never had an ear infection or difficulty eating. Maybe just genetically blessed, but I think that a lot of damage could have been done had I nursed him the conventional way. You can e-mail me at geralynOT@Yahoo.com if you'd like an explanation of how I did it, but I think you'll get the idea!
2. There is a place in Philadelphia called The Institute for the Achievement of Human Potential. They treat ALL developmental delay as a brain injury, including DS - which is a good thing because the commonly seen limitations in adults with DS should not be viewed as a given, rather a map of where to intervene. As an OT I realize that you can work on eating, fine and gross motor development, cognition etc. after problems have arisen, but unless you actually change the way the brain is working, you will never see true change. They have a plethora of literature that you will find yourself compelled to read, but you absolutely should begin with "What to do About Your Brain Injured Child." While you're on the website look around. You will not find any mention of limitation or lowered expectation. Their methods (Developed by a Physical Therapist and a Neurologist originally) find ways to actually help the brain create connections. - This will lead you to the discussion of early literacy (The Institute's book "Teach Your Baby to Read). We started the reading program when Lucas was 6 months old. Today he reads tons of sight words and we are putting them together into little books for him. Not only does stimulating the pathways for reading help with literacy but with memory and a whole set of other things classically seen as part of the "syndrome."
3. This isn't anything for you to look up, just one simple heartwarming fact. There are currently over 200 families on waiting lists to adopt a baby with Down Syndrome. Many of them are families who already have a child with DS. I have read some waiting list estimates of up to 5 years! I have considered it myself.
You will not find many specialists who share this view, in fact I read one article written by parents talking about how much richer their lives are since the birth of their child, how things like marriages and other sibling relationships have actually been strengthened. At the end of the article was a specialist warning that parents tend to paint "too rosy a picture." Well, who should I have believed? The doctors, or the parents who are spending their time and effort to tell the world that their perception of trisomy 21 isn't correct? I once read an op ed entitled "Down Syndrome is no big deal" written by a dad, I laughed out loud thinking about the doctors and specialists who probably wanted to have the man committed!
4. Read my blog about vitamin therapy and read this book ---- TODAY!
Vitamin Therapy and Down Syndrome; Unlocking the secrets of improved health and behaviour.
Finally, let me be one of the first to wish you a heartfelt congratulations on the birth of your new baby. I know how difficult this time is for you, but believe me, it wont be long before that beautiful new life is going to start amazing you and fueling a fire for you to find more and more for him!
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