Showing posts from 2018

On Henry's First "First Day"

I am about to send my two year old to pre-school. Just like so many other parents who want to give their toddlers a little head start. But our experience has been a little different from most.

When I tried to sign my child up for the two year old program where his brother went to school, they told me no. Instead, they handed me a brochure for a special needs playgroup.

They didn't know my son. They didn't know his name. They just knew he had Down syndrome, and decided he wasn't a good fit for their school. I was given a few excuses. Things like "We don't have the resources" and "We don't have a special education teacher here."

As a parent of a child with Down syndrome, you know there will be battles. There will be times when the world decides your child is not worthy of what others are. They will take one look at your child and without knowing a thing about them, they will decide that your child does not belong.

I can't tell you how heartbre…

Our Sleep Study Experience

Sleep studies are very common in children with Down syndrome, and are recommended for every child with Ds before age two. It is estimated that as many as 60% of children with Down syndrome will have an abnormal sleep study by the age of 4, according to the NDSS. Commonly, obstructive sleep apnea occurs in our children due to enlarged tonsils and enlarged adenoids. Because sleep studies are so common, I figured I would share my experience with ours. While it is just one experience, I am hoping it will help explain what to expect.     Our sleep study was at Yale Children's Hospital in their Pediatric Sleep Study Center. We arrived for 7pm, and met our nurse Ana at the door. She showed us our room, which was one of two or three in the wing. It was a private room, right off of the nurses station. Inside the room were two beds. There was a television and a camera on the wall opposite the bed. There were two bathrooms and a fridge for patient food where I put Henry's milk and …