When we moved to our house from another state 16 years ago, I had no idea where to turn to find services for my four-year-old-son with Down syndrome. But my sister told me there was a little girl with Down syndrome at her kids’ school, and she did some detective work to send me that mom’s phone number. Within a month of moving to our new house, I set up lunch with a couple of these moms to find out the basics: What schools are the best for kids with disabilities and inclusion? How do we get therapy services? What activities are welcoming for our kids? What is the local Down syndrome organization? Which pediatricians and dentists did they recommend?
Nobody gives us a map when our kids are born with a disability. It feels more like getting clues on a treasure hunt where you don’t really have access to the whole map. Some clues are really helpful and others are riddles that are incredibly hard to figure out. So parent mentors can be the guides along the way who share the real deal with you. They can tell you how to avoid the doctor and coach who have no patience, and they can help you find the dentist who makes balloon animals. They can also help you find the therapy groups with an aquatic center and the school that ran an inclusive pilot program with the local university. They know so many tips and tricks to help you on your way. They can also help you navigate some of the really tough stuff like IEPs and Medicaid waivers.
My guide from the moment Andy started pre-school was Kathy Dillon whose son Mitch was only two months older than Andy. She met me at that first lunch meeting, and our boys played Challenger League baseball together when their shirts were so long that they looked like bright orange dresses on their tiny frames.
I was so nervous for our first IEP meeting that I invited Kathy to join us, and it turned out to be a good thing I did. As my husband and I were outnumbered and presented with the unacceptable option of educating Andy in a self-contained environment outside of his home school, it meant the world to have Kathy sitting at the table and slowly shaking her head as she caught my eye. It meant the world to have her meet with us at the bagel shop afterwards and tell us about other options and help us think of strategies.
Kathy went to many of my IEP meetings through the years, and I went to hers. We helped each other figure out the answers to questions about puberty, employment, friendships, summer camp, and so much more. And beyond that, the boys started supporting each other and going to each others’ IEP meetings and exploring post-secondary programs together.
For most of us, it’s too hard to figure out this path on our own, and we need guides along the way in the form of parent mentors. And we are so fortunate in Kentucky to have organizations like Kentucky Spin, the Autism Society of the Bluegrass, the Down Syndrome Association of Central Kentucky, Down Syndrome Louisville, and so many more to find those parent mentors who can stand beside us and share their wisdom. I know we could not have survived and thrived without Kathy and our other mentors in the disability community. So, if you’re still lost and need a guide to help along the way, please consider reaching out to one of these organizations to find parent mentors who can help you.
Check out the national and Kentucky organizations who can help you find peer mentors:
HDI Disability Resource Guide: Advocacy Organizations