NOTE: October is Down Syndrome Awareness Month
A guest blog by Courtney Hansen. Courtney is a non-attorney special education advocate. She advocates at the local, state, and national level for disability rights, and blogs about it at www.inclusionevolution.com
My son with Down syndrome and his typically-developing twin brother just started kindergarten. The military also just moved us across country this past summer.
There’s been a lot of change this year, and I was often overwhelmed by the idea of my first-born twins starting “real” school in a new state. I cried like a baby their first day of school, but they just marched off to school like they owned the place. I was amazed, but realized that it was the result of years of preparation and help from so many different people. Having a son with a disability has shown me the value of “the village.”
About two years ago, I really started investigating the idea of a fully inclusive education for my son with Down syndrome. I even blogged about my ultimate goal: my twins graduating together in the year 2031.
For most other sets of twins graduating together wouldn’t be a goal, because it would just happen automatically. With lower graduation rates for students with disabilities compared to non-disabled students, and even lower rates for student with intellectual disabilities, I knew our path would be hard fought. It all starts in kindergarten of course. So, I worked tirelessly over the past two years to get where we are today. Both Hunter and Troy are in the same class, and Troy is 100 percent included with his typical peers with the appropriate supports to be successful.
Too many kindergarteners with intellectual disabilities don’t have the same opportunity as my son, even though federal and state laws require the continuum of placement to start in general education with appropriate supports. You might ask how I successfully got him included 100 percent of the time and if he really is being successful. I will tell you it all starts with the village, as well as learning you and your child’s rights.
1. Find Your Tribe
Social media can be a blessing and a curse, but for parents of children with disabilities it’s often an awakening.
Getting plugged into the Down syndrome community via social media helped me realize what is possible.
Even though we’ve lived in three states since our twins were born, I’ve been able to make friends in each state and around the country who have shaped my perspective on what it means to live and thrive with an intellectual disability.
Can my son go to college? Of course, because I just talked to Beth whose son with Down syndrome is moving across country to attend George Mason University.
Can Troy really find a meaningful career? Yes! Elizabeth’s son just got another promotion at Kroger.
These friends have pushed me to set high expectations for my son.
2. Lean on Experts
No doubt about it, you are the expert of your child.
When he was little you were up in the middle of the night with his croupy cough, and you’ll be there when he ages out of the system.
Still, we can learn so much from doctors, therapists, counselors, and teachers.
I’ve always taken a hands-on approach to my son’s endless therapy sessions and education.
I always set some of the private therapy and individualized education program (IEP) goals. In return, many doctors, therapists, and teacher have taken the time to really educate me on best practices in my son’s areas of need and given me functional tips to help my son at home.
3. Start Advocating
I started advocating early ensuring my son would receive an inclusive education with proper supports. I attended conferences and special education trainings to learn my son’s educational rights.
You can start local with school board meetings and school superintendents. Request training for teachers in best practices like Universal Design for Learning and Multi-Tiered System of Supports.
At the state level, I advocated for a bill that is now law in Ohio to end organ transplant discrimination for people with disabilities. Many disability organizations provide opportunities to advocate nationally either over social media or in person.
I attended the Buddy Walk on Washington, and had the opportunity to ask my U.S. Senators and House of Representatives to preserve important health care protections for people with disabilities and better fund IDEA. Positive change starts with you and me. So get out there; our children’s futures depend on it!
4. Take a Break
Most parents of children with disabilities are the most tenacious, hard-hitters I’ve ever met, but this heightened existence of higher highs and lower lows can take their toll on Type-A personalities like me.
I have to make a conscious effort to lean on friends and family outside of the disability community.
The military affords our family respite hours every month, and I use every last minute. The only way I can be a superhero for my son is if I take care of myself.
Parenting a child with a disability is a marathon, not a sprint.
Even with the strong start my son has, I know we will hit many bumps in the road.
Will I know when his needs aren’t being met? How will I ensure he’s included, but also gets the support he needs for a successful future?
My best answer is to lean on my village. I wish more people would embrace their “village.” Our children, community, and country would be better for it!
Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.
Excellent! My daughter is 10 years old and happens to have Down syndrome, and I couldn’t agree more with what you wrote.
Yes, we’re in a small school district south of Tacoma, Washington that started to make changes a few years ago. Some parents helped lay the groundwork for us. I’m pushing for more teacher training, but overall they are open to inclusion and have included students with significant disabilities already. It’s helpful when you can step into these districts. I had the privilege of being able to move and research the best districts. Not everyone has the same privilege.
I’m impressed that you were able to fully include your son in Washington State. My school in Wa state absolutely refused to allow my daughter gen ed time in kindergarten until they “got to know her” and they “took data” and she “grew more independent”. They would rather put her into a multi-age class with no other girls or kindergarteners. The principal claimed that allowing her one recess, lunch, and a couple of 20-minute visits to kindergarten was a “robust inclusion schedule”.
That’s why we filed a state complaint and went to a local Catholic School. It’s their way or the highway, and Wa State is far behind in inclusive practices.