Evie the Extraordinary and Her Mommy: The Journey As We Go

It's official! My new children's book, "The Polka-Dotted Penguin" has launched today!  How fitting that my labor of love launches on Labor Day. The writing of the book and putting all the parts together took about a year. It was definitely a pandemic-worthy project.  I wrote this book because I wanted more books available for sharing with Evie's class for World Down Syndrome Day on 3-21 and for Down Syndrome Awareness Month in October. I'm happy to release my new book just in time for October! My hope is that this book will be used as a tool to start conversations with children about how to treat others who may look or act differently than they do. It's all about inclusion and celebrating differences.  This book is perfect for ages 4-9, or any ages who love penguins, or really anyone who loves Evie! Here's how to order: Barnes and Noble (Hardcover): https://www.barnesandnoble.com/.../the-polka.../1140115530 Amazon (Hardcover, Paperback, Kindle) : ...

I was pretty excited to go to the Down Syndrome Clinic's Fashion Show today.  We had a local radio host, 3 photographers who donated their time, a buffet lunch, and a rockin' fashion show lined up.  Kids and adults of all ages were there--grandparents, aunts and uncles, parents, friends, and the rock stars themselves, the kids with that extra copy of the 21st chromosome.   There was a toddler with a royal blue ball gown and a tiny silver tiara in her hair.  There was a chubby-cheeked infant boy sporting a preppy navy dress shirt and shorts and a summery tan fedora.  A 12 year old boy made us ooh and aah with his skills with a hula hoop and a spin ball.  He wasn't that good--but his happy spirit and attempts to make the audience laugh made him spectacular. A group of elementary-aged girls in a dance troupe performed for us, and their team member with Down Syndrome, while she didn't keep up exactly, showed that she was fully included and appreciated. ...

I'm not talking about signing up with a dentist here...this blog post is about the Department of Developmental Services .  The DDS is fully funded by Social Security and is meant to create partnerships and opportunities for people with intellectual and developmental disabilities to " participate fully and meaningfully in, and contribute to, their communities as valued members." The way I understand it is that DDS is more to help adults with disabilities to engage and function and contribute to the community.  So why are we signing up little 3-year-old Evie?   I'm still figuring that out. I hear that getting into DDS now can help to make the transition easier as she becomes an adult.  The questionnaire to apply was already quite length for Birth-5 years old, so I imagine that it's even harder answering the questions for a teenager.  We can also be connected with the local ARC to have more resources for Evie.   When Evie is older and transitioning to more ...

Somehow the visit to Equipment Clinic snuck up on me.  It was a 3-month wait after being referred by the Down Syndrome Clinic, and then I found myself trucking downtown with Evie and her entourage for the appointment.  The nanny and I imagined that the Boston Children's Hospital Equipment Clinic would be a huge room filed with all types of equipment for kids with disabilities, and that Evie would try different equipment. We were sort of close--a long line of wheelchairs along the hallway led up to a smaller exam room. The physical therapist (PT) and a representative from National Seating and Mobility were with us.  The PT reviewed Evie's needs, which were a pediatric walker and possibly adaptive stroller.  Rewind for a second. Evie is doing great with her ankle-foot orthotics, but she is still wanting to lean forward while she stands.  Her Early Intervention team thought that as she transitions to preschool in a few months (!),  it is a good time to...