Dx Trisomy 21(Down Syndrome): Alice Success Story [UPDATED]
Parents choose stimulation and opportunity as their philosophy
Alice was born at 37.5 weeks weighing 2 kg after a swift and normal delivery. It was the first of April and we were told for the first time that our only daughter had Down Syndrome. Shocked and unprepared, we went home with our tiny baby to face the difficulties of the many symptoms. As a result of her low muscle tone, Alice had very little movement of arms and legs, she didn’t cry, made a big effort to nurse and would sleep most of the time. It took one hour to feed her 50 ml of breast milk.
“We faced many months of sleep deprivation.”
After birth, Alice lost weight due to poor feeding, and we faced many months of sleep deprivation.
Baby Alice faces an uncertain future – even her doctors disagreed as to what was best for her
“The Doctor recommended no early stimulation, no contact with people, not even baths.”
When she was 2 weeks old, we took Alice to see the cardiologist, who diagnosed her congenital heart defect, and recommended no early stimulation, no contact with people, not even baths. But the pediatrician recommended early stimulation, so soon her agenda was filled with appointments with therapists. Alice gained very little weight those first months and we were overwhelmed with the endless appointments, medical examinations and worry.
What did the future hold for our only child?
Baby Alice had a convergent strabismus which made it difficult for her to use two eyes together properly.
A loving Aunt tells Mother “Don’t worry, Alice will surprise us all”
Luckily, My cousin gave us a copy of the book What to Do About Your Brain-injured Child and said “Don’t worry, Alice will surprise us all”. My cousin had done the Intensive Treatment Program at The Institutes with her son and during one of his visits to Philadelphia, she took me as a babysitter. I had been to The Institutes ten years before, but we had never imagined we would one day return for a different reason.
“The course would completely change our lives.”
When Alice was 6 months old, we signed up for the What to Do About Your Brain-injured Child course in Belém, Brazil. A month later, we flew to Belém to do the course that would change our lives and Alice’s future. Alice could not crawl, and she reacted poorly to pain. She could not make meaningful sounds either. After that week, we felt relieved that there was a solution for our worries and that it was up to us to make a change. This course would completely change our lives for the next few years.
Mother and Father and Alice became a real team they worked together every day to make things better.
“We were advised not to speak two languages but we knew the brain grows by use.”
At 9 months Alice was on the program. We adopted “the floor as a way of life” and at 10 months she was on the Reading and Math Programs. Despite recommendations to the contrary, Alice was being brought up in a bilingual home. Doctors and therapists advised us not to speak two languages at home on the assumption that, since children with Down Syndrome have significant speech and language difficulties, she would be further disadvantaged by hearing two languages. But now we knew that the brain grows with use and the more the brain was fed with information, the more it would grow.
Crawling was Job One: Little Alice really enjoys coming down her inclined crawling track
Baby Alice begins single words – it turns out to be very easy for her to learn to read.
Crawling with Dad that is fun to do anywhere but – yes that is one of the most famous beaches in the world – Copacabana Beach. This is Alice’s backyard – she lives in Rio de Janiero, Brasil.
“The speed of her development was amazing.”
We soon began to report more changes: Alice was rapidly catching up on her milestones. She began to crawl at 8 months, to creep at 10 months and to walk at 13 months. The speed of her motor development was amazing.
Her cardiologist (a different one by then), was impressed with her improvements and said Alice was free to do the respiratory program. This was important for us, as Alice still had big issues with feeding – it took an hour to feed her a blended meal. She was still under weight and she still had big delays in her speech. We reported that she did not interact normally with people or with the environment. She seemed to live in her own world and she tuned out often. She did not respond when she was called and she made repetitive movements. She never seemed to be hungry.
Laughing all the way – by age 10 months Alice could creep!
Hurray – at age 13 months Alice was up and walking
We scheduled our first visit to The Institutes when Alice was 13 months old. She had already started on the program at home after we attended the course. At her first visit she was given a crawling and a creeping victory.
“We were thrilled that Alice was getting results so quickly.”
Her initial functional diagnosis was Mild, Diffuse, Bilateral, Cortical and Midbrain Injury. Her chronological age was 7 months, and her neurological age was 4 months at her first evaluation. Alice began to catch up quickly as a result of her 5 months of home program. We were thrilled that Alice was getting results so quickly. From then on, we were officially on the Intensive Treatment Program.
Grandfather, an engineer, accompanied us on our first visit. When he got back home he built Alice a brachiation ladder. Leia, Alice’s advocate, wisely realized that she would soon be ready to use it. A few months before he had also build her a crawling track.
Encyclopedic Knowledge: Alice has seen thousands of Bits of Intelligence and she can easily identify hundreds of different animals which are her favorites. Here she is with some of her library around her.
The following couple of years Alice progressed fast. Every new visit to The Institutes she would get a new victory, and this made us very proud and relieved. In the second visit Alice got a walking victory. On their third visit Alice got a language victory, then an understanding victory, then a running victory.
“Better running, better speech, better reading, better health”
In February 2019 we attended Lecture Series VI, Alice was 3 years and 10 months old. Alice was running 3 km daily and she ran on the beach once a week. She loved to jump on the rebounder, hang from her trapeze and she did beautiful rolls. She could do amazing math and spoke hundreds of words and a few sentences in both Portuguese and English. I was happy to report that she was toilet trained and could type on the I-pad to express what she wanted. We took Alice to her regular visit to the cardiologist, and he gave us wonderful news: her heart defect was completely closed.
“Her physical growth caught up to her peers but her reading and math are far superior.”
At 4 years old Alice had achieved a normal height and weight, compared to an average child of her age. She grew fast and caught up with her cousins of the same age. Father taught her how to ride a bike and she is currently working to become an independent brachiator. She can perform a gymnastics routine with spotting. She is on a the social growth program and is quickly improving behavior and developing independence. She can now eat, use the bathroom, brush her teeth and get dressed independently. Alice loves reading and reads one new book every day, in both English and Portuguese. Today she does math problem solving and reads at a second grade level but it will be two years before she is the age of a first grader! She is completely bilingual in reading, understanding and speaking.
Once a week we take Alice on a fun outdoor activity. and loves to run on the beach. We saw really amazing language development after Alice began on a good running program.
A bright future for Alice
At her most recent visit she had more than 1000 words of speech, and her speaking vocabulary had tripled. We no longer worry about her future as we did. We still do not know what the future holds for Alice, but now we know it is a bright and happy future.
Update – Years 5 and 6
Alice at age 6
In 2020 the world was shaken by the pandemic, and parents were concerned about the effects of staying home with a 5-year-old raised to love movement and the outdoors. But they also saw an opportunity to work on her independence and in manual activities.
Mother tells us “As a result, it was the year in which we most advanced in independence. She began to help in simple chores in the kitchen, like rinsing the dishes and loading the washing machine, and she loved to watch me cook. She did lots of cutting and pasting, threading beads and played games.”
Planting and caring for the vegetable garden with mother.
Alice was not quite six years old when she went to school in the afternoons and had her first full opportunity of interacting with children. After a whole year at home, social interaction and behavior were an issue, but throughout the year she learned a lot and she has made real friends.
She began to ride the bike 5 months later at the normal age to do so. Parents were thrilled with this victory as it is a rite of passage of childhood and an important developmental milestone with a new type of independence and freedom.
Timing was perfect as summer was just starting in Rio and this meant lots of pool days for Alice who has been swimming since she was three, but she is now doing laps in a pool.
Alice the water baby, not yet three years old
Alice began running at age 3. She has clocked hundreds of miles since then. She just completed a 7-k race around Lagoa in the heart of Rio, a classical course for professional runners. At age 6 she has mastered running, swimming, and biking.
What is next for Alice a triathlon? Why not?
Alice looking very at home at the stables
Now Alice has developed a passion for horses, after enjoying a couple of weeks at a ranch. Parents took advantage of this to give her more opportunity, this time the challenge of riding a horse. Now Alice has begun riding lessons and is loving it.
Where is the lead line with the new rider seated safely in the saddle? Alice is already into acrobatics – heaven help us!
Alice already looks like an experienced ranch hand.
Parents no longer worry about her future as they did. They still don’t know what the future holds for Alice after all what parent can look into the future for their child? But now they know it is a bright and happy future.
As her cousin once said, “Alice has surprised us all.”
For parents and Alice, the future looks bright