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Saved by the Mom Squad
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
Photo of Lelia Purky wearing a straw har with a yellow flower with blue doodles
Finding Your Passion
We all have different towns and we all have different things that we do in the course of the day. It may be that the student is a great artist or a great writer. When it comes to assistive technology we have to think about what is going to give that student the ability to do what they love without having to see roadblocks and go, "I can't do that”. There are so many tools out there, whether it's a communication app, a video app, a math tool. With assistive technology you are not making the student into what you want them to be.
A screenshot from the YouTube video, "Finding your Passion"
Key Facts - The Five E's of Early Intervention
Early interventions for CP should be based on the strongest possible scientific evidence for benefit and should have the smallest possible risk of harm. In the US, early intervention (EI) is a system of services available under the age of 3, to support infants and toddlers with developmental problems and their families as they interact with and care for their child.
Briana (Age 4) in therapy moving a puzzle piece with her PT
7 Tips Daily Mindfulness
As a physician and researcher, I skeptically looked forward to learning more about mindfulness practice, because there is evidence it helps with stress management, self-regulation, focus, productivity and happiness. As a mom, I felt that weird mix of guilt that I was going to focus on “not-my-children” for a whole day, excited anticipation and anxiety that maybe I would be a complete failure at this. It turns out all the mental baggage I took into the workshop was the exact opposite of what mindfulness tries to achieve. The daily practice has since changed my life.
Drawing of a person meditating with doodles of suns and happy faces against a green background
Top 5 Reasons Not To Hate The NICU
PTSD can be common in parents after a child with Cerebral Palsy has left the NICU. One of the hardest days of my life as a NICU parent was not what I would have expected it to be. It was the day I went home without my baby, after spending every waking moment since my emergency C-section by his incubator. I never knew I had a dream about what it would be like to have a baby until that dream was taken away.
Baby in an incubator in the NICU touching parent's hand