Before Paloma was born my experiences with people with Down Syndrome were limited to my husbands cousin Coral. A funny, bilingual, boy crazy gal who loved Selina and her uncle Victor. I guess as an outsider i thought that down syndrome was what it was and nothing was going to change that, or maybe i never gave much thought to it at all. The later is probably unfortunately true.
But when Paloma was born i felt something deep with in me whisper in my ear, "More, there has to be more." So the first night home with my girl i made her a promise. I'm sure every parent makes their own promises to their new born. Maybe some promise with that first kiss after birth, or maybe some promise in their hearts every time they hold their baby. I said it out loud. I told Paloma, " I promise i will fix you." Of course in hind sight i realize that "fix" is not the appropriate word and that she is perfect and beautiful and probably the one doing the fixen:) But in my mind, filled with grief, and looking for hope, that is how my promise unfolded........and the research began.
The first thought that crossed my mind was nutrition. Was her metabolic system different? Would the basics like DHA or EPA help her? Was there a vitamin out there for Down Syndrome? Had anybody else thought about this? What about all the things people do to make their babies smarter? Would that work with Paloma? So the first thing that i did was google "Nutrition and Down Syndrome." I followed a couple links and found my self at this blog, got down syndrome . BAM!!!!!!! There it was! Yes! I knew it! There was something to my feeling about supporting her with vitamins and minerals. I wasn't crazy and here is a girl that has spent the past few years of her life researching and talking to specialist and compiling it all for a book and in her blog. It seemed the basic building block and square one was a product called Nutrivene. This however was just the tip of the ice burg and a four month google binge began.
So every time i nursed, every time I had a spare moment, and each and every night i googled. The next blog i came across was Down syndrome up up up and away. I found this post Baby Days, How to stimulate a new born. And i had even more new information and i didn't realise it yet, but also a new form of therapy.
I immediately made a tummy time pact with myself and put away the bouncy seat.
We stared nightly infant massage and the research continued.
I then found another blog, The down syndrome action plan and here was another mom with the same ideas and the same approach and here it was again, this new therapy. (Not new, but new to me.) And the first mention of The Institutes. I was starting to see a circle form and new information was leading me back to old information. It was the formation of this circle that showed me that i was on the right track for me and my family....i had found it, i had found hope. And let me tell you, hope heals.
I reached out to each of these woman in a panic. And they were all so gracious to respond and help. The talked to me as if it was the first time they had shared this information. Something i try to do now when i come across a lost mommy looking for answers to her own questions. It was in one of these messages that i found out about ICAN and our Neurodevelopmentalist Kay Ness. We contacted Kay and are now enjoying life on "the program."
We show pictures of black and white images for visual tracking.
We are also the proud owners of a crawling track....
We make flash cards for her therapy, as recommended from the Glen Doman book How Smart is Your Baby.
and we try to stimulate her as much as possible even if she falls asleep during our efforts.
So there it is. We'll most of it. I am always looking for new things to help my girl reach her full potential. We just started Cranio sacral therapy and are about to start baby yoga. Yes we are a busy couple of gals. We also have an amazing trio of OT, ST and PT.
And how could i forget the importance of Oral Motor Therapy. We will be getting our home program from SRJ in December.
My hope in writing this post is that another mommy will come across it and feel the relief that i felt when finding the blogs of others. I hope that i can pay it forward. And it is kick off day to 31 for 21. And Down syndrome awareness month.
And for those of you reading who may find this overwhelming or more than you can handle it is easy to pick and choose what works best for you and your family. And let me tell you i am enjoying every single moment with this amazing girl.
And i'll say it again, i am quite sure that she is the one doing the fixin:)