Wednesday, March 23, 2011

Diagnosis Down Syndrome: Settling In.

The first thing given to you as a parent of a child with Down Syndrome is probably a book. A dear little book called Babies with Down Syndrome: A New Parent's Guide. I still have my copy, and have had the good fortune of loaning it out once, and hope I may be able to again.

It is a thorough book addressing all the important medical and developmental things of which a parent of a baby with Down Syndrome should be aware.

I remember getting the book. It was given to me by Charlie's infant teacher for the hearing impaired during the painful three weeks in which we awaited his diagnosis of Down Syndrome.


I will not give this book a poor review. It is very helpful, and perhaps most importantly it has pictures. I lived for pictures of other babies and children with Down Syndrome when we were starting out on this journey.

The book, as I said is thorough, and good information. But when I loan it out, or recommend it to a new parent I give a caveat: Read it second, not first. The book touches briefly on the emotional impact of receiving a diagnosis of Down Syndrome, but mostly deals with all the extra health, developmental, and even educational stuff that comes in the Down Syndrome package. What I really needed at the outset, though, was reassurance, real life examples of families doing this Down Syndrome thing. I needed full color, large, beautiful photographs of babies with Down Syndrome doing "non-Down Syndrome-y" things... What ever that was.


You may remember my reaction on the phone with the doctor when he told me Charlie had Down Syndrome. "Now What?" I didn't mean it like, "Now-what-do-I-do-because-my -life-is-over?" It was just what came out of my mouth, but after reading Babies with Down Syndrome, I guess I expected the doctor to answer with a list of tests and check-ups and instructions. When he simply answered "Keep doing what you have been doing," well, it was that moment--about the second minute of Down Syndrome having entered my life--that I realized there was more to this journey than a baby with a series of extra needs, illness, and a list of "can't do's". Mostly, there was just a baby. The same little baby I'd loved and raised for the past 11 weeks.

Oh, I didn't stop reading books or doing Internet research. That is just not my nature. But I did begin to believe our life could be normal. We settled in, we did regular things like grocery shop with Charlie in a sling. I went to mommies groups. We passed him around at church, and dressed him up cute as we could. We didn't let ourselves be any less proud.

This is me doing "normal" baby things with my sweet baby boy. Taking him for a walk in our fav Ergo Carrier.

Now when I meet, in real life or over the net, a new parent of a baby with Down Syndrome I recommend books that have come out more recently like Gifts, or I give addresses of websites like Band of Angels. I recommend Woodbine House publishers, and also Internet support groups like Downsyn.com.

There is an entire movement, an campaign called More Alike than Different, and while I sometime scoff at the idea when I look over at Charlie as we are loading the kids into the van after a shopping trip, only to see him licking the door of the car next to us, in the overall scheme of things, from babyhood on, it is true. Our son with Down Syndrome, and indeed our entire family experience, is More Alike than Different.

More here.

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