Wednesday, August 31, 2016

Autism and Down syndrome combined is not typical Down syndrome neither Autism along.

Autism and Down syndrome combined is not typical Down syndrome neither Autism along. Having these conditions combined brings more challenges and deficits in all developmental areas in Kids Down syndrome and Autism than just having Down syndrome along. There are more behavioral and social challenges than what is observed Down syndrome along. There is even lest room for hope for a kids with this coexisting conditions.  Here is an article of a dad who talks about his experience raising a child with Autism and Down syndrome:

But regardless the odds,  I keep fighting for a better future for my son.

Tuesday, August 30, 2016

Overcoming the ODDS: Part 2

"I see a light at the end of the tunnel"

Autism is the hardest thing that I have to deal with in my life. It has been hard to see my son not able to connect with his environment neither with people and his family, which includes me. He didn't like me for a while. Now, I know he loves me! When there is time of struggles between Tommy and I, it feels very typical sometimes because I have the same struggles with Francis. Of course, there will always be struggles between Tommy and I because I am also the person whose challenges him the most and the person who disciplines him. Tommy is re-learning self-help skills not matter how long it will take, his dual diagnosis is not an excuse for him not to be independent, it makes the process slower and challenging, but not impossible. If Tommy doesn't behave, he gets disciplined and many times he has gotten in time out. I am also his biggest advocate because I believe on him beyond the labels. I am also his biggest cheerleader because I am immensely proud of him! Because I am his mom first.

We knew since Tommy was a baby that he has aptitude for being a swimmer. So his first swimming lessons were at 9 month old. He has always enjoy the water. But after he got Autism, I truly didn't know what to do to help him. So my mother instant said: Go for swimming lessons. I talked to other mom whose daughter has Down syndrome and recommended a great swimmer instructor who is also a Special Ed. teacher. Her dedication to teach kids with special needs to swim is above and beyond. The first year in swimming lessons was extremely hard for Tommy because of Ataxia —The Ataxia symptoms where shown during the hospitalization in 2011, but they were completely overlooked by traditional medicine. We spent about 3 years in swimming lessons, and it was all worth it!

It was the first time Tommy joined his cousins to swim and Jump (8/27/2016)

Swimming under the water is something 
Tommy has been trying to learn on his own since 
last year. It was great to watch him following his
cousins because he was learning from them
how to swim under the water. But the best of all being part of 
what the rest of the kids where doing.

Tuesday, August 23, 2016

Overcoming the ODDS

My son's dual diagnosis is not an easy route to travel, because it has a lot of ups and downs, bumps and wholes, sometimes very high bumps or vey deep wholes that make me tumble. But when I ask to my self, Why me? I can easily find the answer. I am not a quitter, I am a fighter. I was chosen to raise my son because I have the courage to go in opposite direction, when most people thing that there is just one way to do things, I think there are multiple odd ways of doing things with outstanding results.

Since having my son with T21 almost 9 years ago, higher expectations are becoming  part of the norm for a family and society about a child with T21. Can we say the same for a child with dual diagnosis? No, there is not much high expectation and not much hope for a child with dual diagnosis, Down syndrome and Autism. Autism completely overshadows Down syndrome. Many people even don't know that this is possible. While others think that the dual diagnosis makes them even more r-word. There are not specific intervention for these kids and there is not enough sciencist research to understand the interaction of both conditions. I know that outside of my bubble, there is not hope for a child with dual diagnosis in our society!

Should these paradigms stop me? Of course, NO. This is the fiul that keeps me going. After all this year living with my son with coexisting conditions, I know that there is hope. This will be the legacy I will leave to the future generations to come. There are many stories of kids recovering from Autism, but I cannot say the same from a child who has Down syndrome and Autism. Since he was in the womb, he showed me that he will be an overcomer, a true fighter.  I just want to share this video of our Journey and how he is overcoming many challenges related to Autism.