October is National Down Syndrome Awareness month! I am excited to participate in another 31 for 21 challenge where I will post for 31 straight days to help raise awareness about Down Syndrome. I am excited to participate to share information about what life is like for our son Colin and for our family as a whole.
Colin is a 4.5 year old little boy who was diagnosed with nondisjunction Trisomy 21 (commonly known as Down Syndrome) at birth and confirmed a week later through a genetic blood test. Nondisjunction is the most common type occurring in 95% of the babies born with Down Syndrome. In all of our cells of our body, we have 23 pairs of chromosomes which contain all of the genetic information for us. We get 1 chromosome from each of our parents. Either at conception or just prior, one of the pairs of chromosomes in either the sperm or the egg at the 21st chromosome fails to separate creating an extra copy in all cells of the body. Because of this extra copy found in all of the cells, development is altered and many of the signs and symptoms of Down Syndrome are created.
While Colin has typically fallen in the lower percentages of the growth chart for height and weight, he has really started to move up the charts weighing in now at 35 pounds and just over 3 feet tall. Medically, we have been very lucky as Colin was not born with any heart or bowel defects which typically require surgery. He has experienced two cases of anemia, one of which we are treating now and took medication until the age of 3 for possible hypothyroidism. He has since been taken off of the medication as all thyroid levels have been normal. He has had surgery for a reverse descending testicle and we are thinking we will have another one in the future. His vision has been checking out fine and although we spent the first year and half with failed hearing tests, we have had many successful follow ups at the Ear Nose and Throat doctor. We currently follow up with a gastroenterologist because of reflux and constant constipation. Our biggest challenge we have faced and are still working on today are feeding issues, however, the feeding therapist thinks they are more behavior based and not sensory (I'll talk more on this in another post).
Colin is currently enrolled in a 3 hour self-contained preschool program through our township public school district and attends a daycare facility in the afternoon with his sister. He has always been a learner who spends time observing before feeling comfortable to try or join in on different tasks. His primary interests are sports based as he loves watching basketball and sometimes soccer games. He participates in the young athlete program through the Special Olympics and takes swim lessons once a year.
He is an incredibly loving little boy who also likes his personal space and prefers personal contact on his own terms. He loves to wrestle with daddy, read books, and swim in the ocean at the beach. Physical activity is more tiring for him than most kids so he does not have the same stamina. He is becoming increasingly independent and is often heard saying "I do".
Most especially, we raise Colin just like we do Kailey and treat him like any other typical little boy. The difference is that things may need to be explained differently, or repeated an extra 1-2 times, or sometimes he just needs to be shown something in order to understand how to complete the task. We make him be independent, he is put in timeout, asked to say sorry, clean up after himself, use his manners, don't let him give up and keep pushing him to try until he can accomplish something.
While the diagnosis of Down Syndrome was a scary one in the beginning, 4.5 years later it feels like things are just normal. We have felt a significant impact on our family because of Colin in a positive way and he has inspired many good things in many people. There are days when some of the challenges are a little frustrating, but, we have different kinds of challenges with our typical daughter which feel just as frustrating. This is our life and we wouldn't ask for anything different...
I look forward to sharing information about Colin with you and hope to shed some light on Down Syndrome! Welcome to Down Syndrome Awareness month!