Friday, March 18, 2011

Back in the Saddle

My blog “maternity leave” is officially over... and while I was away so much has been happening in your world. There have been lots of pregnancies, births, and adoptions, many new blogs and new blog addresses, new resources and goodies, and lots of new questions.

So where should I start? First off, if you are pregnant with a baby who has been diagnosed with Down syndrome, if you had or adopted a baby with Ds over the last 10 months or so, or if you have a new blog or blog changes, please email me so we can share your stories.

I have been reading many blogs, catching up with new little ones... and I am reminded of how much milestones seem to matter to us parents in the beginning. We are nervous and wondering how this new child will fare... we still believe that hitting those early marks is important, a sign of how well our baby will “function”. We still have so much to learn and so much to let go of.

With that in mind, I will repost the very first ds.mama post “Stage Not Age”. The link to the development journal has been updated, so if you have already read this post and could not get your copy, try again.

Stage Not Age

One of the first things to get over when you have a newborn with Down syndrome is looking for milestones based on your baby’s age. We have all heard stories about so-and-so’s baby who held his head up before the placenta was delivered and walked at six months old. Most of us have read some form of a What to Expect book and have a general idea of how old a baby is when certain things happen. Flush that knowledge from your mind and try not to pay too much attention to Mrs. So-and-so.

Babies with Down syndrome develop along the same path as a typical baby, meaning they reach most milestones in developmental order but they do it on their own schedule. They also have a lot more milestones to celebrate. Who knew there were a zillion sensory and gross-motor skills that are reached before a baby rolls over? You are going to need a whole bunch more cute stickers for that First Year Calendar than the measly 10 that came with it.

There is an amazingly detailed resource out there for setting expectations for your baby’s development and tracking your child’s progress from birth through about the first five years. It is called the The Developmental Journal for Babies and Children with Down Syndrome. It is put out by the English government program, Early Support. The material is provided for free online in pdf format. When you see the journal you’ll realize that this group has put a ton of research and effort into this project, and you will be thankful to the Brits for this contribution to your resource arsenal.

The journal includes the five areas of development (communication, social-emotional development, cognition and play, motor and sensory development, and self-help) and is categorized by 11 developmental steps. For each item, there are three columns to track your baby’s progress. There is also room for adding notes and questions.

Enjoy your baby's stages because while they sometimes seem like they'll last forever, they won't. And, make sure you go get your journal!


  1. Welcome back!!! I loved this post the first time I read it! I can truly relate to the last couple of sentences, it's amazing what a year can do. It is so important to focus on the "now" and not worry so much about the "when"...when you focus on the "when" you miss out on the "now" and you can never get the "now" back!

  2. I'm so glad your back. You emailed me about what sippy cups are best for are kids. I bought the one you said. Does it just take awhile for them to know how to sip?

  3. Thanks so much for your blog. My husband and I just received our diagnosis and have embraced the future we have in front of us. We've been able to do so by reading blogs like yours and so many other wonderful stories that are shared by wonderful parents such as yourself. I look forward to reading more and learning as much as I can from all that have walked in my shoes. Thanks for the motivation.

    ps- I am a rookie blogger too... :)

  4. This is my first time commenting on your blog. I've seen it on others blog rolls, but I haven't Followed until now.

    My daughter Beth is 26. I still remember those first days and years like it was yesterday. You are right to tell others to cherish them. They go by SO fast!

  5. Well hello there :) So glad you are back!

  6. Thanks so much for your email the other day! and I too am glad that you are back!

    Can you please add us to it's a small world?

  7. Glad you're back! Welcome back!


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