EP 241: Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports with author Kelley Coleman

Show notes: https://www.tamihackbarth.com/blog/episode-241

Happy back to school aka new year!

While I love the fresh start energy of a new school year, it also brings a deep feeling of anxiety. Will the teacher like my kid? Will the teacher be fair? Will the other kids include mine and be kind to her?

The second day of kindergarten was the first time I got a behavior call from school and I have spent every beginning of the school year since educating teachers and administrators about disabilities and disability rights within the public school system.

We have had to learn about special education laws and disability rights all while raising our little firecracker. Sometimes I feel like the universe had this kid in mind for me because what else would explain my past work as a lobbyist, a public school teacher AND a coach? These jobs gave me the skills to go to bat on her behalf. 

But not all families have the time, money, expertise or experience to help their students. 

This is lonely work for parents of kids who don’t fall into the school system because of learning and thinking differences. A lot of times we parents share similar  struggles as our kids.

Between me and my husband we have 36 years of direct classroom experience. AND THIS IS STILL A MYSTERY.

The education system needs help and no place is that more apparent than in special education. If your student needs an IEP or a 504, uses a wheelchair or other medical equipment or has ADHD you have to know a whole lot more stuff than parents who never deal with special education.

The craziest part of this is so much of special education is settled law. It should be this hard to access services legally required for students under settled law, right? Individuals with Disabilities Education Act (IDEA) guarantees students with disabilities free and appropriate education was passed in 1975 and updated in 2004. The Americans with Disabilities Act (ADA)  was enacted in 1990 - 34 years ago.

Why is this still such a struggle? <blood boils>

I recently asked my friends, neighbors and former teacher colleagues what they wished everyone knew about special education. They came through… everyone feels like every single part of the system is set up to fail.

I just discovered our school district has been under scrutiny since 2017 about their failure in special education. They have been involved in lawsuits and are just now trying to get it sorted. Needless to say I will be throwing in my two cents because this has been a shitshow.

People who aren’t directly involved have no idea how much extra work we are all putting in trying to sort out a complicated and confusing process. It is a privilege to not have to advocate for your student.

People who live this every day are exhausted and anxious because we all want the same thing for our kids: a quality education that will help them be lifelong learners. 

This isn’t the last you’ll be hearing from me about systemic changes in education, but I did want to share a resource I found.

Of course I immediately checked this out from the library, devoured the contents and then reached out to the author to be a guest on the podcast.

Meet Kelley Colman.

Kelley Coleman is a feature film development executive turned author and advocate for parent caregivers and individuals with disabilities. 

Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports draws upon over a decade of experience, including her own experience parenting a child with multiple disabilities. 

Kelley lives in Los Angeles with her husband, two boys, and her son’s trusty service dog.

Who can you share this episode with? Does anyone you know know a student with thinking and learning differences like ADHD, autism, dyslexia or other learning difficulties? Do you know a family that has visible disabilities? Do you know a teacher, principal or school board member? Please pass it on.