Parenting is a big job. I have yet to meet a parent who thinks this parenting gig is easy, and when your child has a disability, the job can feel overwhelming at times. 

While most parents are focused on helping their kids become responsible and independent, we are doing the same, except we have to do it amidst a society that is inaccessible, preventing our kids from achieving their goals and dreams. So often it is the lack of supports that place our children at a disadvantage. Our world has a long ways to go in becoming accessible to all people.

I parent two disabled kids. My journey in understanding disability has been painful, as I’ve had to address my own ableism. I know I am not done yet, I probably never will. Being aware of my own ableism is an ongoing process. I am nondisabled, which means there is a lot about disability I don’t “get.” But that doesn’t mean I cannot be a good parent to my disabled kids.

As parents, we do whatever we can to make the lives of our children better. I have found these are five important things for me to do:

1. To love them and respect them for who they are.

That’s a given, right? We love our children. But loving them and respecting them for who they are means all of them, and that includes their disability. In parenting spaces, we often try to separate our children from their disability, yet our children experience the world through their disability. It is their only experience. 

 If we say things like, “I love my child but hate their disability,” we are saying we hate a part of our child’s identity. We also speak volumes to the community our children belong to. Our children are listening, they are internalizing what we say. If they are made to feel their diagnosis is wrong, or bad, or something their own parents “hate,” imagine how that will affect them. Our child’s diagnosis does not define them, but we also cannot separate our child from their diagnosis, it will always be a part of who they are and nothing about them is to be “hated.” It is part of their identity. Loving our kids means loving them for all of who they are.

I want to clarify: I am not talking about children with terminal conditions or those who are medically fragile or who experience painful or debilitating conditions. 

2. To connect them to their community.

I’m all for inclusion, but I’m also all for connecting my kids to their own community. 

My fifteen year old recently attended a wheelchair sports camp for a week. She’s not into sports, she’s an artist, but the experience to be surrounded by people who are like her was the most empowering experience of her life. When I dropped her off, one of the campers told me, “You will have a different kid when you pick her up, it happens to all of us.” And she was right. I have seen the difference. She gathered strength from her own community. She had conversations about being disabled with people who get it in a way I never will because I’m not disabled. And she was able to form deep friendships that are hard to have with nondisabled peers. 

When I picked her up from camp she told me, “I’m coming here every year from now on.” I want that for her. We will make it happen because already this has become one of the most important connections of her life. It makes sense.

3. To educate myself and learn about disability culture.

Because I have two disabled children, I thought I was a part of the disability community. Turns out, I’m not. Really, I’m not! My kids are a part of this community, and as a parent it’s hard to wrap my mind around the fact that my kids can belong to a community I’m not a member of, especially when I’m so involved in the lives of my disabled kids. 

Taking my kids to therapies, fighting insurance, fighting schools and making sure IEPs are being followed, participating in a Down Syndrome Buddy Walk, or being a part of a board of a disability organization does not make me disabled. I will say I am a part of the parenting community of disabled kids. The community is other parents like me. My place in the actual disability community is that of an ally, and I can get behind that 100 percent.

If you are a parent of a disabled child and you’re reading this and it’s making you uncomfortable or angry, I get it! If anyone had told me I was not a part of the disability community a few years ago I would have fought hard and tried to claim my place in the community. Like I said, understanding my place has come from hard and painful work.

I would encourage you to listen to this two part podcast episode of Unexceptional Moms because Marin Hann blew us away with her wisdom as we talked about Disability Culture. Erin and I were challenged by what she had to say. Transcripts are available.

Part 1: Let’s Talk About Disability Culture and Identity

Part 2: Disability Culture and Identity Part 2

As we have connected to the disability community, I have leaned there is such a thing as disability culture and disability pride. I’ve learned the history of disabled people from disabled individuals. I’ve learned that while parents do much for advocacy, the real big changes in policy and disability rights have come from the fight of actually disabled individuals. My kids belong to a community of fierce advocates that fight for a better future for my kids in ways I never have.  

Ultimately, we have to keep educating ourselves on disability issues.

4. To actively listen and respect disabled voices.

I have to say it: parents of disabled kids are the people who most often dismiss and ignore the voices of disabled individuals. I find this sad and puzzling, because we are the ones demanding our kids be treated with dignity and respect, yet we don’t treat disabled adults with dignity and respect. We are the ones saying we want inclusion for our kids, yet we rarely include disabled adults in our lives. We are the ones who witness the bullies that come after our kids, so how did we become the bullies who go after the grown up versions of our kids? 

I know. I know. This is heavy stuff. “Nobody knows our kids the way we do.” Which is true, but also, not the complete picture. Disabled adults were once our kids. Their perspective is invaluable. We can learn so much, and by doing so, we become better parents to our kids. 

Related: Bringing Together Parents of Kids With Disabilities and Disabled Adults

This great divide pains me because the rift formed between the disability community and the parent community continues to hurt and harm the very community our kids belong to. And I say this as someone who, being nondisabled, being ableist (even though I don’t want to be) has hurt the disability community. I am at a point in my personal growth where I want to elevate the voices of disabled individuals. I want to be a good ally. I want to step to the side and learn from those in the disability community who have my children’s best interest at heart, same way I do. I want to be a team member, and I can only be a good team member when I step to the side and actively listen and respect disabled voices. 

5. To let my child lead the way.

There is a huge societal push to “overcome disability.” This way of thinking could potentially place my child in harmful situations or present them with unrealistic expectations, all based on “achievement” or “performance.”

I don’t want to push them in ways that make them feel I am not to be trusted. I don’t ever want my child to feel their worth is found in what they can or cannot do. 

There is something to be said about honoring our children, and I want my kids to find our home — and me —  a safe space, away from the ableist world they have to face every single day.

Like I said at the beginning, this parenting gig is not easy, especially when we parent disabled kids. However, we can make positive changes for them, when we make changes in us. 

Photo by Bruno Nascimento on Unsplash

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