Forgetting Milestones and Learning to Measure Progress… a New Way of Thinking! #Reflection

By Mary Ellen Bogucki The start of 2019 had me reflecting on my daughter, Bree’s journey living with Autism. When I started writing these blogs a few years ago, my goal was to share our story in hopes that some of our experiences could inspire and help others. That is still my goal, that with each new experience Bree has, someone else can grow too. I am far from an expert, but I know how […]

Advocate like a Mother

by Kelly Kulzer-Reyes They started popping up around the Down syndrome community about a year ago, at least that’s when I first saw them. “Advocate like a Mother” t-shirts have hit the stage with gusto, and at first I loved them. Really. They are cute. I’d even like to own one. I really like the light burgundy one that debuted at the Down Syndrome Diagnosis Network (DSDN) Moms Retreat back in September. I’d have one […]

Teach Them to Care

by Maria Spencer Over the years, I have had the opportunity to speak to many types of groups—many of them with an audience of primarily women and/or moms. I have had a question come up repeatedly from mothers of typically developing children that I feel is so very valuable and the subject needs to be brought to the surface. Many women have asked me, “When my child sees a child that is differenty-abled, what you […]

We Found Santa at the Pool!

by Tulika Prasad The holiday season is the season of cheer and miracles and the most likely of places to find miracles is in the least likely of places. So guess where we found Santa… At the pool !!! It was the weekly swimming lesson we were at. This was an indoor pool of a hotel on a weekday and like most weeks, we were not expecting anyone in there.We walked in and saw another […]

Lights, Camera, Action!

by Jessica Ebersole I wrote the following poem after the Talent show night at our Joni and Friends family retreat during my internship at Spruce Lake. Family Retreat is a time for families with special needs to come and be refreshed from the daily grind of life with a disability. I had the opportunity to share this poem with the other two talent shows at the following weeks of retreat. Lights, Camera, Action! For a […]

The Endless Fight for Help: Yesterday and Today

by Maxine Rosaler When I was looking for schools for my son twenty years ago, private special education schools were the only schools equipped to give autistic children anywhere near the kind of help they needed. The competition for these schools was very stiff: it was not usual to find out that there were fifty applicants for every spot. And if a parent was lucky enough to have her child accepted at one of these […]

When a kid gave me hope for a better world for my son.

by Tulika Prasad We all know how difficult it is for a differently abled individual to navigate the world with its prejudices. There is much to be desired when it comes to acceptance and inclusions. It often makes me nervous thinking about what kind of a world will my son find himself in when he grows up and when I might not be around to be his eyes , ears, and voice. So, in the midst […]

The Surprise of Cervical Spinal Stenosis

by Lisa Blumberg On Friday March 23, 2018, when Janice, the pet therapy lady, came with a languid dog whose name evades me, I could still take some steps if I leaned my full weight on my walker. My internist had just told me that my MRI indicated that the progressive weakness in my extremities was being caused by upper spinal cord compression from cervical stenosis. This totally surprised me. I was having pain now […]

What Do You See?

 by Carey Handley What do you see when you look at my daughter? I’ve sometimes wondered how other people see her. I wanted a daughter perhaps more than anything else in the world. So much so that I wished for her when I was at the Wishing Door in a mosque in Cairo, Egypt followed a few days later by a wish tucked into a crevice in the Western Wall in Israel. My wish was […]

Forgetting Milestones and Learning to Measure Progress…a New Way of Thinking! #TravelingWithAutism

By Mary Ellen Bogucki For a long time we didn’t travel or take vacations. From a very young age, my daughter, Bree hated car rides. The minute the car started moving, she would cry. It took us years before we learned she had Autism and sensory issues. Her vestibular sense was affected and movement was a problem for her. The biggest mistake we made was when we decided to stop at a waterpark on our […]