still a rose

I was recently part of a conversation in which another parent recently said, “I️ don’t want my child to know about their disability because they have to learn to make it in the real world.”

I hear this sentiment quite a bit, and every time, I respond with some version of, “I believe, with every fiber of my being, that my child MUST know about her disability because she has to learn to make it in the real world.”

It is absolutely true that the real world is not always accommodating to those with disabilities. Hell, sometimes, it’s downright hostile. We’re working on that, by the way. But here’s the thing, friends (come closer, this is important) ..

Whether or not you tell your child they have a disability does not affect whether or not they are disabled.

Stay with me. We’ll process this together.

If a child isn’t able to walk, not telling him that he can’t walk doesn’t make him able to walk, nor does it make him any less aware of his inability to walk than I promise you he already is. Trust me, a kid who can’t walk knows that almost everyone around him can walk and he can’t. (And the other kids? They know too.)

That said, if we refuse to acknowledge his disability for fear that it will make him disabled (which we’ve already agreed isn’t how this works) then we can’t talk to him about all of the things that he needs to know to make it, as a disabled person, which is what he is, in the real world.

He needs to know that there are myriad ways to be mobile that don’t involve walking.

He needs to know there are ways to make the world work for him, but that he’s going to have to ask for help, find the tools he needs, navigate complex systems that are fraught with pitfalls and obstacles and loads of cynicism and self-doubt.

He needs to know that he can can and must set exceedingly hard goals and that he can achieve great and awesome and wondrous things … and that he’s going to need some compensatory skills in order to do them that his peers may not.

He needs to know that he’s going to face bigotry, both overtly and in its more insidious form of quietly lowered expectations and that he cannot ever accept the limitations that ignorance seeks to place on him.

He needs to know that he will have to constantly fight back against the voices of ableism – both outside of himself and within, sometimes just by showing up.

He needs to know that he can, if he so chooses, be part of a vast movement of folks working on making the world a whole lot more inclusive.

He needs to know that there are people who can help him along the way and that there are ways to identify who those people are.

He needs to know that there is a whole world out there of people like him – who are disabled in infinite ways – who live amazing, fulfilling lives. He deserves to know that he can find those people and that when he does, it will feel like coming home.

And so every time I hear someone say that they don’t want their child to know about their disability because they have to learn to make it in the real world, I say that I believe, with every fiber of my being, that my child MUST know about her disability because she has to learn to make it in the real world.

I can tell my autistic daughter that she’s neurotypical until I am blue in the face, but it ain’t gonna change her neurology. What it will do is deny, or at least delay, her understanding of who she is, of why she looks and acts and feels so different from her peers, of why so many things are so challenging for her, of why some people just don’t get it, don’t get her. It will take away her pride in knowing that she’s part of a beautiful, vibrant community of similarly different folks. And worst of all, it will leave her vulnerable to a real world that is sometime downright hostile to those with disabilities, with no language nor framework for navigating it.

13 thoughts on “still a rose

  1. I totally agree! As sad as it is, this is the reality of some parents. It doesn’t make the disability worse neither does it make it better! And like you rightly said, it’s cut down on the support they need to navigate already complex world they live in.

  2. You never run out of wisdom and the willingness to put that wisdom into such amazing words. Brooke is so lucky to have you as her Mother, as well as having Luau as her Father and Katie as a phenomenal sister.

    Love you,
    Mom

  3. This is the kind of post that first drew me to your site, Jess. It is this kind of clarity I needed at the beginning of my ASD journey with Isabella and still need. Thank you, dear one.

  4. Another brilliant post! Do adults just forget how they felt and saw things as children? Kids know when something isn’t being said. They know when something is *different*. And my experience (my own and my kids) is that what they build up in their minds is so SO much worse than the actual situation. By not talking about and supporting a disability, those parents are not only doing a huge disservice, as you brilliantly pointed out, they’re causing unnecessary anxiety in their child.

  5. Thank you for posting this! I have to tell you about 2 different situations.

    First, there is a mom I know who refused to tell her son he was on the spectrum. He just couldn’t understand why he was different, had trouble making friends etc.(she would tell us this). The real kicker and to this day really upsets me, is that since she refuses to tell him about his ASD and she herself refuses to accept it, he lost out on the biggest moment in his life to date. He is a gifted piano player and Carnegie Hall was a having a special concert or something where they were allowing autistic musician play there. I don’t remember all the details. Anyway, she would NOT have him do it b/c she wanted him to play at CH not based on his disability but on the fact he could play the piano. Unbelievable! We tried to explain to her about the opportunity, but she wouldn’t budge, so he never got to play there. And to this day he is still having the same issues b/c he doesn’t know. He’s in high school now. Really upsets me b/c he is so talented. I don’t talk to her anymore b/c of that.

    And now the second. My son is fully aware of his disability. He knows it’s nothing to be ashamed of or anything. He’s in high school now. They just started a new semester and his new teacher asked the class to do a power point presentation about themselves. He wrote about his autism in the power point and basically told everyone, it’s not a bad thing and I don’t care what you think b/c that’s who I am so take it or leave it. He has friends at school. And he is now self advocating for himself and asking for what he needs and not waiting for Mom to come swooping in. You get what I’m saying. But I see the difference in someone who knows and someone who doesn’t.

  6. We’ve always talked about Baguette’s autism–to her as well as to others. I don’t ever want her to think it’s something to be embarrassed about, no matter what some random person says. I tell her that it means that her brain works differently, and there’s nothing wrong with that–in fact, that we need to have brains that work differently so we have more ideas and perspectives in the world.

  7. I agree. My son was mis-diagnosed for several years, and when he was diagnosed with ASD, we struggled with how to tell him. (Of course, he’d researched the tests he had taken and figured it out).

    Our challenge was, and still is, giving him the language to talk about it. I’m not sure I’d say he’s ashamed of being autistic, but embarrassed maybe? He won’t tell anyone, yet very comfortably shares his ADHD.

    I think part of it is because his displays differently than others, so he’s been told he “not autistic enough” for certain programs, yet he’s not welcome in mainstream ones.

  8. Jess, I couldn’t agree more! This is an important post! My son is almost 21. We have always been very open with him and his siblings about his challenges. Theirs too. Nobody is perfect! I took a lot of hits from extended family, school and friends because of our openness. They thought I was “enabling his behaviors”. I persevered. He read his own testing and IEP. He had every opportunity to add or take away from the IEP. We wanted full input from him on what works and what doesn’t. Today, he is at a local college. Living with roommates. It took work but he is advocating for himself. He couldn’t do that if we hadn’t been open with him.

  9. I wasn’t diagnosed until I was 22 and let me tell you, it kind of sucked. I mean there were points I was fairly sure I was an alien because other people were deeply confusing beings that I had no idea how to interact with. I didn’t have the right vocabulary to explain why I was so picky about food and about clothes. If I’d been diagnosed sooner maybe I wouldn’t have burnt out the way I did, maybe I wouldn’t have had an eating disorder.

    Or at the very least maybe I would have found the sense of peace I have post diagnosis a whole lot sooner.

  10. Dear Jess, I need advice. I need help. I’m not sure the best way to get in touch with you. We’ve been suspecting our youngest is having silent seizures. Tuesday, while at school, she had what now appears to have been a more typical seizure, by definition. I didn’t find out details until today. She remembers nothing except feeling like she wanted to lay down after she got her ice pack. (She was going down a slide at recess, broke her glasses, curly her face, black eyes.) I’ve been on a list to be called back by a Children’s hospital in Kansas City for almost three months as we are trying to schedule the three day EEG. I’m terrified. I have calls in to her doctor, therapist, psychiatrist. The waiting is a lot. I know I’m rambling, but I’m sorry. I trust you, I know you know this feeling. Where do I go from here?!

    • Oh, Wendy, this is heartbreaking. I’m not sure how much help I can be, but this is what I would do if it were my kiddo ..

      First, keep calling. I’d start with your child’s pediatrician. Get a nurse practitioner on the phone and tell them it’s an emergency – that either you need a referral to a neuro who can see her next week or they can take her at the ped office today or BOTH. Make it clear that she’s not safe.

      Use your network. Ask friends, family, put a plea on Facebook, ask anyone and everyone you know if they have a name of a good pediatric neurologist / epileptologist for you. Use any leverage you have to make a personal introduction.

      Call the epilepsy dept at the hospital directly and tell them that your child isn’t safe and you need help. (913) 696-8950 is the number I found here – https://www.childrensmercy.org/epilepsy-treatment/. If they tell you there’s a long wait, tell them you’re happy to show up last minute if there’s a cancellation OR to simply come in tomorrow and wait.

      Contact the Epilepsy Foundation and ask for their help. Here’s what I found online ..

      St. Louis:
      Darla Templeton, CEO
      Joan Bach, Operations and Events Manager
      Theresa McBride, Independent Living Coordinator
      Jeff Barry, Education Coordinator
      Emily Swoboda, Development Coordinator

      Kansas City:
      Joni Miller, Development Director
      James Townsend, Program Director

      Kansas City Branch Office Address
      2340 E. Meyer Blvd., Building 1, Suite 300B
      Kansas City, MO 64132
      (816) 444-2800
      (816) 444-6777

      This is the link – https://www.epilepsy.com/missouri-kansas

      It looks like this is how to reach them electronically –

      https://efmk.org/contact-us/

      (I’d call and if you don’t get an answer, leave a message AND an email)

      If they don’t have resources, try Danny Did .. 800-278-6101

      Keep calling until you get live people on the phone. Say the words, “My child isn’t safe.” I know how hard it is to feel like you’re shouting into the wind, but don’t give up. You’ll find the one person who will listen and the dominoes will fall into place. I’m so sorry that it’s so hard.

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