Things I Didn't Know

Since finding out Gracelyn has Down syndrome, I've spent many hours reading information.  I find the things I'm not informed about scare me most, and I think that's true for many of us.  We are scared of what we don't understand and sometimes deal with that by ignoring, bullying, or making fun of the person or idea.  I believe I have an opportunity to help people understand Down syndrome so that hopefully it doesn't scare us so much and perhaps help my daughter and others avoid some the less kind effects of our fear.
Today I want to share a few of the things that stood out to me right away.

1. Down syndrome is chromosome condition that is not caused by anything the parents did.  It is an extra copy of the 21st chromosome.  There is nothing that could have been done to prevent Down syndrome from happening.

2. There are three types of Down syndrome.  The type Gracelyn has is the most common called trisomy 21.   Translocation Down syndrome is where the extra chromosome is translocated from another chromosome and can mean that a parent is a carrier.  Mosiac Down syndrome occurs after fertilization and only effects some cells, not all like the other two types (originally we thought this was they type to hope for, but our Down syndrome specialist says that this can cause major problems).

3. Most of the babies born with Down syndrome are born to mothers under 35.  I thought the likelyhood of having a baby with Down syndrome at my age was rare, but it's not.  It is somewhere around 80% (I believe) of babies with DS are born to mother's under 35.

4. Most cases of Down syndrome result in mild to moderate (not severe) mental retardation.  With the positive support from family and friends, high expectations, and early interventions, people with DS are able to have jobs, live on their own, and take care of themselves.  Expect the most.

5. Some colleges are offering programs for disabled students so students with Down syndrome are now able to go to college.

6. Down syndrome is the most commonly occurring chromosomal condition.

7. There are many support organizations across the United States (and other countries) that support families from day one, provide activities for kids to get together, put on proms just for kids with disabilities, and support research efforts.   I've listed a few on my favorite websites that I follow (either their websites or have like on Facebook).

8. There are Down syndrome specialty centers across the United States.  We go to the Sie Center for Down Syndrome at Children's Hospital in Denver.  Doctor's, nurses, physical therapists, counselors, etc all trained specifically to help kids, adults, and families of those with Down syndrome.  Our doctor and the counselor at the Sie Center also have children with Down syndrome so they understand on a level not all medical staff do.

9.  Early intervention services make a world of difference and are provided (at least in the state of Kansas) free to families.  Our service center provides physical therapy, occupational therapy, speech, and other services from the time they are born through school age.  Please let our legislators know how important it is to keep these services when they are wanting to cut them.

10.   In studies I've read, well over half (in one study it said 9 out of 10) of prenatal diagnosis of Down syndrome result in abortion.  If you've received this diagnosis, please check out the support groups and meet a few families with children who have Down syndrome before you make any decisions.  It's hard to swallow, it's a long road, there are lots of fears and tears, but my daughter is a beautiful person who I would not trade for anything in the world.