Dx Trisomy 21: Rose’s Success Story
Rosie – proving every day that there is magic on that extra chromosome
Here is Rose with her Advocate and Director of The Physical Institute, Leia Coelho Reilly. She is the niece of Dr. Raymundo Veras who did pioneering work for children with Down Syndrome. At The Institutes children who were called Down’s Syndrome are lovingly called Veras children.
When Rosie was born, I was filled with grief and overwhelmed with worry. I cried to my friend on the phone that I just wanted to go back to yesterday, when I was filled with hopeful anticipation of a new baby. I thought our life of family adventures was over. The first thing I said as I gazed at her was “She’s a girl!” And then quietly, “She has Down Syndrome.”
I wish she had a better welcoming.
I stressed over the challenges ahead
I prayed that as much as she endured my grief, she also knew how fiercely I loved her. In those blurry days I stressed over the unknown challenges ahead and how I could keep her healthy. A wonderful family put us on the path for Rose’s therapy program with The Institutes for the Achievement of Human Potential. I don’t have to worry about Rose, we have so much guidance for her care, I just must show up. It’s so much more than I thought possible when I first held her. Sometimes grief is just a doorway to joy. And uncertainty the path to possibility.
Imagine if when I first held her, I exclaimed, “Look! Here is the heart and soul of our family,” and laughed in disbelief at my good fortune. What if, instead of fearing a burden, I sighed in relief with the knowledge that she will lighten the load of caregiving with the joy she radiates into every situation?
What if every child with Trisomy 21 was welcomed with joy?
What if the narrative changed so that every child with Trisomy 21 was welcomed with such joy? What if the medical community didn’t fill expectant parents with fear so that 60 percent terminate the greatest gift they have been given?
What if our world was 60 percent more radiant?
When Rose was two months old, we attended The Newborn Course taught by The Institutes Staff and realized Rose’s diagnosis does not limit her. The brain grows by use!
Part of Rose’s daily routine became the maximum time in her crawling track. Early mobility stimulates cognitive development as well as respiration, which means more oxygen to the brain as well as easier speech.
Rose also got sensory activities each day to strengthen the visual, auditory, and tactile pathways. It was all part of The Institute’s Newborn program, we had learned a lot, and now we were having lots of fun together!
Rose’s Reading Program started with stimulating her visual pathways with black and white images, then details within a configuration, then LARGE single words, then couplets, then phrases, then homemade books about her experiences with Puffins.
The Staff does not see Rosie as a child with disabilities but a child with huge potential
When The Institutes Staff told me that she’s bored with her materials, make her books about puffins or violins, I thought they were crazy. The Staff doesn’t see Rose as a child with learning disabilities, they see her as a potential genius, and if they see her that way after helping kids like her for almost 70 years, then her mother should believe in her too.
Today I made her a book about Puffins, and I thank that wonderful family again who introduced us to The Institutes and gave us the book How to Teach Your Baby to Read” by Glenn Doman.
After attending the What to Do About Your Brain-Injured Child course, we made an appointment for Rose at The Institutes.
The clinic of The Institutes for the Achievement of Human Potential does not feel very clinical. It’s more like a team of adoring experts who truly love your child. We received an updated program to do with Rose at home.
The other families with us were inspirational…they were all returning families who had been doing the program and getting results. Before coming to The Institutes these children had conventional diagnoses of cerebral palsy, hydrocephalus, hyperactivity, etc., Each child has been a delight to get to know.
The children immediately bond with each other and become genuine friends while they are together. We are all here to help our children’s brains … I didn’t expect to feel so much magic happening in my heart.
Thank you again to the family who sent us here, what a gift you have given us.
In some intellectual areas Rose is now ahead of her peers
One of the main takeaways I have from this appointment is that when the midbrain is compromised, the input of information is not impaired (that lies in the cortex), and Rose has had an accelerated input of information due to the intensity of the stimulation we’ve been giving her.
This has actually put her at a higher neurological age than her chronological age (I was hoping she would be close to age level but didn’t dream she would be ahead)! However, an injury in the midbrain will interfere with output (mobility, language, and manual competence.) Rosie is almost up to speed with mobility, and we will continue to focus on the programs that organize the midbrain.
Can we measure how much joy Rose creates?
But the best part of this trip was not just having the Staff congratulate us on how much Rose had achieved… it was hearing my husband ask me if they can measure how much joy Rose creates, and if every parent thinks that their child with Down Syndrome is so special. He believes that magic is carried on that extra chromosome and so do I. We would never change who Rosie is. Doing this program is not to “fix” her, she is already perfect, but to give her the capacity to live her fullest life… she deserves it.