October is Down Syndrome Awareness month and I have asked my friends to ask any questions they may have about Down syndrome and I am attempting to answer them all. I have been asked what surprised me the most and the biggest challenge is raising a child with Down syndrome.
The biggest surprise is the number of appointments that are involved in raising this little fellow. He currently has 11 appointments a month for therapy (speech, occupational, physical, developmental and the coordinator). They are all helpful and needed. This does not include medical appointments. I recently filled out an application for Asher's preschool. I needed to list his physicians. There were 5 blanks. He has 6 physicians. He is relatively healthy, he has a few minor medical problems, but somehow has 6 physicians. All this is surprising and challenging. It makes me very thankful that I am able to work part-time because I am not sure how I could manage all this and work full-time.
The other thing that surprises me is how people with Down syndrome are so often underestimated. I did this myself prior to meeting Asher. People with Down syndrome have achieved great things.
Hands down, the biggest challenge is seeing a friend lose a child with Down syndrome. The community is small and close. You are instantly bonded with someone when you have Down syndrome in common. When a family in your community loses their child, it is heart wrenching. I cannot imagine how hard it is for them. This has happened in my local community twice in the past 6 months. There is nothing I can say that can make things better. I can only pray for them when I think of them, which is often.
In loving memory of Baby L and Baby J.