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!