Five years ago my biggest worry was buying the cutest matching outfits for my unborn twin boys. All that changed when one of our boys was born with Down syndrome.
Troy completely changed our family’s perspective, and set me down a path of advocacy that has changed my life forever.
An outsider may believe these changes would be for the worse, but I continue to be amazed at how many new, unique doors have opened for me because of Troy. I continue to be amazed at how “normal” and happy our family continues to be amongst the messiness of a seemingly scary diagnosis. We truly are the #luckyfew!
Everyone’s path is different, even in the small world of the Down syndrome community. But I’ve found some shared characteristics amongst many of the parents of children with special needs that I’ve met.
Most parents possess that innate strength to do anything to protect their child. Special needs parents just have to flex that muscle more often.
In five short years, I’ve become a champion for my son and his right to a life of self-determination and choice. And I realize I’m not alone. Many disability advocates can identify with the following actions, or something similar to them.
5 Ways You Know You’ve Become Your Child’s Best Advocate
1. Your child’s personal file is larger than your own.
Troy is a really healthy, smart fellow. Still, Down syndrome automatically comes with a long list of doctors appointments, therapy sessions, and Individualized Education Plans. All of this has been compiled on hundreds of pages in two giant 3-ring binders.
Experience has taught me that you don’t know where you’re going, unless you know where you’ve been. Troy’s records help me quickly reference what’s happened in the past, so I can advocate for the best future possible.
2. You can recite federal, state, and local laws that impact your child, and you often know more about these policies than the experts do.
You can recite the meaning of countless acronyms: IDEA, IFSP, IEP, FAPE, LRE, SSI, BIP, ADA, ABA, UDL, ASL
You know your child’s rights under the law, and realize that in many situations it’s up to you to see that laws are enforced.
Personally, I’m working with my Ohio state legislator, Niraj Antani, to introduce a bill that would end organ transplant wait list discrimination for individuals with disabilities. Rep. Antani seeks advice from disability advocates on this subject, because he realizes we are the experts.
In terms of the recent Senate health care bill, Better Care Reconciliation Act (BCRA), I’ve been advocating tirelessly alongside fellow disability advocates to see that Medicaid is not cut. Many legislators are unaware of the important impact of Community and Home Based services Troy and other individuals with Down syndrome receive through Medicaid. It’s our job to educate those in power on the power of legislation, and how it’s revolutionized the disability community in the past generation.
3. You’ve become fast, close friends with complete strangers.
Social media is a powerful force in the disability community. It’s brought together like-minded advocates from around country to rally for a common cause. I have dozens of friends that I’ve never met, but feel a special bond with because of Troy. When I meet these fellow special needs parents at conferences or advocacy meetings, it’s like meeting a distant loved one. There’s an instant connection and a desire to share your path with others like you. It’s what makes us the #luckyfew.
4. Your hobby or new career path includes advocating for your child.
I have interviewed and spoken with so many amazing parents, siblings, and family members that have transformed a seemingly scary diagnosis into an opportunity to change people’s perceptions and create opportunities for their loved ones. Everything from volunteering for their local Down syndrome association to blogging about their experience to starting a business that specializes in special needs planning and marching on Capitol Hill.
Before I had Troy I taught middle school history, and assumed I would go back to teaching once my twin boys were in school. Now I’m applying for the Council of Parent Attorneys and Advocates Special Education Advocacy Training to become an advocacy expert. My number one priority in doing this training is ensuring Troy gets the education he needs and deserves, but I would also love to help other families along their journey. I’ve always wanted a job that serve others, and I’m proud to say that Troy has helped me continue on this career path in a new and surprising way.
5. Your vacations include meetings with your legislator or advocacy calls
We just spent a week in Michigan with family, and I really wanted to turn off all things advocacy. I was feeling disability advocacy fatigue big time, especially with the endless fight to #SaveMedicaid. I did a fairly good job of this with trips to the lake, shopping, and running a race with my mom. Still, I couldn’t help but call a fellow disability advocate friend to find out about an important advocacy meeting she had while I was gone.
Even my vacations have been planned around advocating for Troy. We coordinated a trip to see family in California with the National Down Syndrome Convention. I visited my favorite city, the District of Columbia, this past spring to advocate on Capitol Hill.