Dx Trisomy 21: Thomas’ Success Story

Thomas gets off the slow boat and defies a dark prognosis

Our beautiful boy just before we attended the course

Thomas was born prematurely. When I saw him for the first time, at birth, I saw the almond eyes, but thought it was a characteristic of premature babies, since trisomy 21 test was negative. The day they mentioned the possibility, and the following days, were the worst days of our lives. No doubt it! A resident, without any experience of life, came and told me without even waiting for my husband to return.

“He will only speak one language.”

After a week in the hospital, the staff realized he had a heart condition, three weeks later this was confirmed. They sent us to talk to a geneticist her job was to show us all the statistics of how bad our son’s life would be. At that moment, the only question we had was would Thomas be able to speak more than one language? We are immigrants in a country that has two official languages, so speaking three languages is necessary for us to communicate.

A beautiful baby with his whole life ahead but his doctors saw only limitations

She said “no; he will only speak one language, so better you choose now and start using only this one from now on”. We didn’t speak to each other for a week in front of Thomas because we could not choose one language and didn’t want him to be exposed to the “wrong one”.

What non-sense!

Therapy started as soon as possible, even when he was in the NICU, but after two years of therapists saying he was “doing great” we knew his progress was not that great.

“never compare him with any other children, not even with children with the same diagnosis.”

They told us that Thomas would develop at his rhythm and we should never compare him with any other children, not even with children with the same diagnosis.

It could be scary to do things different than professionals tell you to do, but nobody lives your life and knows what you are facing. I have learned to follow my instincts and my dreams will come true. I learned about The Institutes in a very particular way. A Trisomy 21 young man was interviewed by local news because he was the first Canadian with Trisomy 21 to get his driver’s license (and he was only 19 years old), so I sent a message to the newspaper to ask what his parents did when he was a child so he could develop to be as a close to an average child as he was. The first answer was “Do you really want to know?”. What kind of answer is this? The second answer was “Glenn Doman”. We had no idea who that was.

Glenn with Francesco a graduate of The Institutes program

I googled it and a whole new world opened in front of me. I also remembered that before me there were 56 comments congratulating Arnaud, the young man who got his driver’s license, most of them from parents of children with Trisomy 21. Apparently, none of them asked how he achieved such a high level.

Do they believe it just happened?

My husband and I read Glenn Doman’s book “What To Do About Your Brain-injured Child” – Thomas was just 30 months old. That same month we attended the What To Do About Your brain-injured Child Course in Philadelphia. The most important thing I got from the course was that if we kept doing the traditional therapies, Thomas would develop at his rhythm, but if we learned how to give Thomas the best opportunity to develop, he would develop in an unbelievable rhythm that would make up for lost time.

This is exactly what happened

At his first appointment Thomas could not use eyes together properly. He wore glasses to correct his 3 degree of myopia and for his strabismus. He had a persistent startle reflex and he was bothered by many sounds. He understood about 200 words and simple instructions.

Thomas loved books from day one

His response to tactile sensation was delayed and he refused to wear hats and socks. In mobility he could roll over and sit up but no forward movement. He had only two words of speech and could grab things with his hands. His health was poor – he had many illnesses, slept poorly and he would grind his teeth. He had already had cardiac surgery twice. He was developing at 30% of his well peers at this time. I stopped working and began a full home program with Thomas.

Everything starts to change for Thomas

After only six months of program he began to change. He was reading sentences and enjoying books! He loved his books and read then again and again.

Math Program: We had finished the program for the day and I suggest we play with puzzles, I asked him “to do the giraffe”. Thomas looked and said “52” Guess how many dots there are on that giraffe? It was really amazing!

His language went from 15 words to 200.

We knew that even though he was so young, he was really reading. By now he was refusing to wear his glasses because his vision had improved. His focus and attention were significantly improved and he was fully trilingual now as well (Portuguese, English, and French). Sounds in the household bothered him much less than before. His memory for people and places was very good and he was interacting well with adults and children. Before we started he did not speak now he has many words and phrases and he enjoys singing. His language went from 15 words to 200. On his birthday, when the time came to end the party, we wanted to stay longer but Thomas said, “no – sleep!”

Thomas is tough he crawls every day

He learned to sit and to stand. He could crawl 200 meters in a day. He can stand up by himself in the middle of the floor and he has begun cruising.

Crawling Together: One day as we were almost done our crawling it started to be really hard so I told Thomas “let’s crawl together!” He said “ok” and sat on my back so “we could crawl together”.

Thomas on a clear pathway to wellness

We are not finished yet but Thomas is not stuck with a dead end diagnosis anymore. We believe that Thomas has a great future – as full of possibilities as is the future of any child.

Thomas and his team – we are making the impossible – possible every day!

Update

It was a Sunday afternoon in a Winter day. Not so long ago. Thomas was creeping as part of his mobility program. Suddenly, he stood up and announced – “walk” and then he walked 3 meters, non-stop, very determined. We could not believe what our eyes were seeing. Mom and dad looked at each other to kind of confirm “do you see what I see?”. We, smiled, yelled out of joy and cried at the same time. Thomas looked us confused and smiled. We had a big and long “family hug”. We were so proud of him. Thomas is 4. We have been waiting for this moment for a long time. He is a big boy now and a new whole world has opened in front of all of us. We can’t wait for what is coming next.