• Dreams Form Goals

What Megan Wants You to Know


My name is Megan, and I'm a hard core Theatre Nerd, wheelchair-user, and disability advocate living with cerebral palsy. I'm very happy to be writing for Dreams Form Goals, and thank you Cori for the invite. My task here today is simple. I'm going to give you a short list of things I think parents of children with disabilities should know. Some things I learned from my parents, some I learned from working with a disability advocacy organization, and some, I just wish I had learned sooner. I hope you'll find all of them useful.


You know all those things you said you were going to teach your kid some day? You can still do that. Let me be clear. I don't have kids. I have never known the fear you must have felt when your child's doctors gave you a diagnosis you never thought about and started spouting off terrifying medical mumbo jumbo at 1,000 words a second. I've never heard a long list of things my kid will never do. I can't even begin to imagine what that feels like. But here's the thing. It is your doctor's job to prepare you for the absolute worst things that might happen to you kiddo. But an M.D.'s words don't automatically become prophecies as soon as they are uttered. The only real way to find out what will actually happen is to get to living. This is true for all parents. I promise you, your child has his or her own unique talents. You will just have to wait for them to reveal themselves. You can help things along, though, by doing things with them. Just like any other parent does. So start teaching them what you want them to know. It's the only way you will find out if they want to know it too!


It's never too early to start preparing them to leave the nest. I know that seems eons away. But it's not. And a rather bittersweet reality of parenthood is that your job is to prepare your children for life on their own. How do I suggest you do this? Well...

  1. Let them dream, and support them in pursuing them.

  2. Ask them what they want often, and take them seriously. I think as a general rule, people can be a little dismissive of kids. The assumption is that whatever they dream up will change in a week. And maybe it will. But listening to them might give you some insight into your child's natural abilities and interests. Keep your ears open!

  3. Be sure to ask their opinions too. Especially on the things that will directly affect their lives. This will teach them that you see them as intelligent, and that they are valued.

  4. Teach them as many life skills as you can.

  • Give them chores to teach them responsibility.

  • Teach them to cook, because everybody's got to eat.

  • Teach them about money! (How many people leave home without knowing how to keep a budget?) If you can, give them an allowance for doing their chores, and kill two birds with one stone.

Check your insecurities. Everybody wants their kids to fit in. And nobody wants their kid to get hurt by just being themselves. But you can't protect them from everything. Again, life is made up of experiences. If you hold your child back to try to keep them from experiencing rejection, you aren't really protecting them from anything. You just keeping them from living a fuller life and finding their tribe. This is a concept called, "the dignity of risk."


Don't use their disability as an excuse. You kid is bound to fail a few times, and get rejected a few more. That's life. When this happens, try not to always assume that it is because your child has a disability. Yes, sometimes people discriminate on the basis of disability. Other times, people get turned down for things because they aren't ready for whatever thing they are aiming for. Assuming that every failure or rejection is connected to your child's disability deprives your child of the potential to grow and learn. It also sells other people short. (Not everybody is a jerk). Using the disability excuse could also cause your child to give up trying. Think about it. Your kid can't do anything about their disability. And if no one wants them as a result of it, why should they bother trying in the first place?


If you wouldn't let your child be lazy do to their disability, then you should use it to demand attention either.


Talk to your kid about boundaries. It's kind of hard to make friends when your mom and dad are always hanging around, especially if your child is older. Try talking with your child about what is okay and not okay to do in front of their friends. Then respect your agreement.


If your child is 18, they aren't a kid anymore. People tend to label people with disabilities as perpetual children. Fight that example. Call your kid "young man" or "young woman" when around other people.


That's all I have for you right now. I hope my ramblings made something like sense. I hope to write for you again sometime, but until then, welcome to the new world of Parenthood! Your kid is going to be okay. You're going to be okay. You're both capable, and you've both got this!


Until next time,

Megan

What I Want Parents to Know

Wisdom from self-advocates living with a disability

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Dreams Form Goals is not affiliated with any organization linked within this website. This website is a privately-run project created for the 2018 Illinois Partners in Policymaking.