Tuesday, April 21, 2009

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. The hardcopy journal can be ordered and shipped free anywhere in the UK just by requesting it. I had my copy shipped to a friend’s mother and got it once my friend returned to the US after a visit home to England. 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. Sandra, great new blog, and a wonderful concept! Thank you for taking the bull by the horns and starting this. I'll be a regular here!

  2. that is so cool. My best friend lives in England so I am going to have it sent to her. She'll be home in two weeks. Maybe she'll get it by then!

    Thanks for the tip!

  3. Wow! That's a neat journal. I wish I knew about it when my son was born. He's going to be 19 months soon. I suppose it's too late to play catch-up?

    my blog: Bill and Ria

  4. Ria,
    I don't think it is too late. I would go look at the pdf file for Step 11 and see if you guys are there yet. If not, work your way back until you find the steps you are at.

    I will add your blog under The Designer Genes Club. Let me know if it should be moved under a different category.

  5. Hi Ria,

    I looked over my journal and I would guess it was designed to cover at a minimum the first 3 years and probably the first 5 years. Yay! So go get one!

  6. Cool! I will download it tonight. By the way, I linked to this post in my latest entry "Breast to Bottle to Cup".

  7. REALLY....you Rock!! thank you!! smiles

  8. Hello, thanks so much for this. But I can't find the Developmental Journal online? I followed the link ..but nothing relevant appears.
    It would be great if you could add an updated link, thanks so much!!!
    Expectant Mum

  9. New link for the journal is found here:

    1. Thank you Chriss! I will update it in the post.


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