LEFT: Sylas being held by Mom, Sue Fleming. Photo Courtesy Evan Gordon Photography
Sue Fleming shares about rolling up her sleeves to help pave the way for her son’s future
Some people search their entire lives and never find the reason they are put on this earth.
When my son Sylas, was born, we learned he had Down syndrome [1]. This was something that came as a complete surprise in the delivery room and I was unsure of how to feel, what to do, or even where to turn. However, I knew it was my job to take care of him, so I made the decision that I would take my educational background, roll up my sleeves and help him achieve his fullest potential.
Related: Early Intervention: First Steps in the Right Direction [2]
I participated in his therapies, soaked up as much information as I could find and joined our local Down syndrome interest group for support and guidance. However, I still did not feel it was enough, and wanted to do more to pave the way for his future.
In 2010, a spot in a leadership program through Temple University’s Institute on Disabilities called C2P2:EI (Competence & Confidence: Partners in Policymaking for Early Intervention) became available to me. During this intensive course, I learned more than I thought I ever would about disabilities, inclusion, laws, technical assistance, therapies, health issues, and much, much more.
Thanks to this program, I am now a Parent Consultant for a non-profit called PEAC (Pennsylvania’s Education for All Coalition). PEAC is a community of parents, educators, and individuals with disabilities who believe that children of all backgrounds and abilities should be successfully educated together in their neighborhood schools within the general education curriculum. I have given lectures about Sylas, his development and inclusion at Drexel University and Penn State University, participated in a Family Experiences Project through Arcadia University, gone to IEP meetings with other parents to assist them with getting the services
they feel are appropriate for their children and consulted with parents at IEP clinics. Additionally, I assisted PEAC with coordinating and facilitating their First Annual Inclusion Conference this past November.
Through this journey I have met so many knowledgeable people with true compassion and love for people of all abilities, learned more than I ever thought I would about disabilities and inclusion, and made some wonderful new friends. My life is fuller than it’s ever been; quite a switch from the emptiness that could have easily consumed me when Sylas was born.
Sylas changed the course of my life and I am forever grateful for him. He has shown me what the years before him was in preparation – helping others and paving the way for inclusion. Sylas is a determined 3-year old with a great sense of humor who loves to interact with everyone he meets. He is developing wonderfully and surprises us daily. He has shown me what it is to love, and through him, I have found my calling.
Sue Fleming is a devoted mom and wife. She and her husband Mike have two children: Zeke, 5 and Sylas, 3 (who has Down Syndrome): The family lives in Norristown, PA.
Read More: Real Moms Share [3]
You May Also Like
- What is Down syndrome [1]
- What is an Intellectual Disability? [4]
- Dad’s Emotional Video Defending Down Syndrome [5]
- Early Intervention: First Steps in the Right Direction [2]
- I Do Not like Being a Special Needs Parent and That’s OK [6]
- Coping with the Life You Never Imagined [7]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [8]
- A Complete Guide on Positive Behavior Support for Children With Special Needs [9]
- Family Chat: Improving Lives with Positive Behavior Support (PBS) [10]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [11]
- How to Get Free From Unrealistic Expectations of Motherhood [12]
- Father’s Perspective: Raising a Child with Special Needs [13]
- Daddy Loves You: A Reminder for Daddies of Children with Special Needs [14]
- Being United, Pampering, and Taking Care of Ourselves [15]
- Avoiding the Power Struggles with Your Child [16]
This post originally appeared on our January/February 2012 Magazine [17]