March 7, 2007 1:57 PM
New baby with Down syndrome
Hi, Barbara.I was searching for information this evening on the McLean Bible Church ACCESS ministry and somehow came across your website. My daughter was born in December and has Down Syndrome. I am trying to understand and find out information to best mother my new baby (we have 2 other daughters). There is a new Down Syndrome Parent network of Loudoun county that I have been turning to for information. We have read all the initial literature for new DS parents. Any guidance or helpful tips would be welcome.
Thanks,
Hi ___ -
Just relax and enjoy her. The only difference you'll notice is that she may not initiate the next developmental step, but you will need to provide extra stimulation to encourage things like learning to hold up her head, reach for things, etc.
Great that you are getting involved with a moms' group! Also, hook into whatever early intervention programs are available. Check for Easter Seals services in your area.
Have you read Babies with Down Syndrome? You can also check here under the category Down syndrome. And I'm sure lots of moms will comment on this so you can check their blogs and get to know them too.
Be sure to introduce your new daughter proudly to all your family, friends and neighbors. Let them hold her and enjoy her and ooh and ahh over her beautiful features. Before all else, she is a baby :)
I think the best thing for Jonny (our son who is almost 15) was that we taught his siblings to be PROUD of his Down syndrome. We truly believed that he was differently gifted - not inferior to "normal" people at all. Today he is the most confident person you'd ever want to meet - look through this photo album to see what I mean.
Please know that this is the beginning of an adventure which will never, never end. Every member of your family will be transformed by this new addition and you will grow in wisdom and love.
I would never go back to who I was before Jonny came into my life.
I am here for you and you can call me any time. I am going to post this so you can get input from other parents of kids with Down syndrome.
Much love and best wishes!
Posted in Down syndrome | Permalink
Comments
Hi! I'm the mom to seven wonderful children, three of whom have Down Syndrome--one daughter by birth (age 6), two daughters through international adoption (ages 8 and 2). I saw your letter earlier and have been thinking what it was like to have a new baby with DS.
My favorite remark after having Emma was: God just reached down and gave you a big ol' kiss on the forehead! That has proven true in so many ways. I have been blessed by Emma's sweetness and sunny disposition and the way she just keeps trying. Her "default" disposition, if you will, is happiness, although it wasn't obvious in those early months.
In a different vein, another helpful remark was: The doctors' appointments diminish over time. It seemed like we had appointments with doctors or therapists at least weekly for the first year with Emma, and she was in good health! These tended to be stressful because so many of those doctors had the most stereotypical view of Down Syndrome. (Ironically, this happened in Canada, where people pride themselves on being so inclusive and tolerant of all types of people.)
The best advice I received is some Barbara already gave you: they are babies, first and foremost, and more like other children than different. Down Syndrome is part of the package, but not usually the most important part. Your darling girl will develop her own personality and likes and dislikes and one day you'll realize you forgot all about this syndrome thing. Not for good, of course, but for a while.
We derived great benefit from the therapists sent by Early Intervention, although I understand the quality varies from county to county. My girls have always derived the most benefit, however, from trying to keep up with their siblings, as well as wanting to be understod by them.
I have really found the Down Syndrome series by Woodbine House publishers to be helpful. On the other hand, I feel like the best thing I ever did for Emma was, paradoxically, releasing her from timelines for reaching certain goals. So what if the book says she should be walking by two years of age and she walks at two years, six months. She now runs and jumps and rides her scooter and trike.
I know these are rather scattered musings, but I am tring to rein myself in! Congratulations, dear lady, and welcome to a life of finding out just how deeply your Father's love runs to you and through you.
Posted by: Jill | March 7, 2007 6:52 PM
