Friday, August 9, 2013

Down Syndrome - Remembering the Early Days

Tertia on safety patrol, a few years ago.

It's been my unexpected privilege in the last few days to talk to two other Down syndrome moms, whether virtually or face-to-face, whose daughters are quite a bit younger than Tertia.  And it brought back those memories of how isolating it felt, how frightening, and how exhausting, to be shoved into this completely unfamiliar world.  You feel like all the medical experts are heartless robots who just want to tell you what is wrong with your child, and the very seriousness of some of the medical issues is terrifying.  (Down syndrome carries with it a greater risk of heart defects, leukemia, hearing and vision problems, digestive issues, autism, etc.)  I remember when Tertia was born, not being able to read through the medical brochures (which were mostly horribly outdated and insensitive anyway) without feeling physically assaulted. It felt like, as Martha Beck wrote in Expecting Adam, having your heart caught in a meat grinder. 

Then later, after the cavalry arrived and the exhausting whirlwind of making sure she met with all the medical specialists she needed and got started off with the therapies she needed calmed just a little bit, I had time to feel scared and overwhelmed again.  "I am going to have to be so pushy, just to get to square one of what she needs.  I'll not be able to keep up with the latest research and she'll miss out on something REALLY important.  I'll take my eyes off her for one second and she'll wander off and get killed.  She won't have friends.  I won't have friends.  She will have behavior problems.  Her siblings will suffer because I'm spending too much time taking care of her.  School will be too hard for her."  Wow, that was a lot of mommy-angst!  Truth be told, all of those worries are variations of standard mommy-angst that I have recognized in regards to my other three children as well.  The intensity was just exponentially higher because of her diagnosis.  As it stands now, I haven't stopped worrying, but I can honestly say the worry is more or less evenly divided among my four children.  I'm sure there are things I've done wrong, but time has softened the angst and given me some of the larger perspective.  A friend shared this hilarious satire today, and I was reminded again of the unnecessary worry so many of us take on ourselves as moms.

So if you're reading this as a new or relatively new parent of a child with Down syndrome, I'm honored.  I would love to be able to share the definitive list of advice, tips, and links, but the truth is, there is none.  The following links and tips are just things that I personally have found helpful, or like.  You will no doubt develop your own list of favorites over time.

Nutrivene is a line of nutritional supplements that we have been using, to greater or lesser degree, since Tertia was a baby.  In recent years I have frequently forgotten to give her her daily dose and I never gave her every single supplement that is recommended, but I do believe the special vitamins have made a positive difference in her overall health.  It was one of those things that I could actually do when she was tiny, so it helped with some of that mommy-angst.  So I'm glad we went this route even though there is no way of proving scientifically that it helped. 

Love and Learning is a language and reading program that we used from early on.  Tertia could read simple sentences at age 3 and was able to keep pace with her peers once she was in school.  It may surprise people, but children with Down syndrome can learn just about anything other children learn, given time and patience.  This program is ample proof of that.  It probably helped that I was a literature major and it was very important to me for my daughter to be able to read.

Karen Gaffney gave me inspiration and hope when I really needed it.  Here's a young woman with Down syndrome who followed an ambitious educational path, excels at her chosen sport, and is an articulate speaker.

There are so many blogs and websites that didn't exist in those early years.  Each one has a different feel and tells a different story, but I am so thankful for them all.  There's a joy in watching the current crop of toddlers with Down syndrome prove themselves.
Noah's Dad
Enjoying the small things
The blessing of Verity
Down wit Dat
Everything and Nothing from Essex

Tertia dashing to the car for a trip to Oaks Park with Daniel and Quarta today

The obligatory pose.  As you can see, she still loves Hello Kitty

I blog mostly about my quilting, knitting and various domestic adventures here, but Down syndrome is a recurring feature.  I think of it as my way to give back just a little, and I hope it helps some who are not as far along on this road.  Here is the link to the previous posts I've tagged with Down syndrome.

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