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How Do You Teach Your Child About Disabilities?

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I have had a rough year. Health-wise.

I was in danger of losing my eyesight in January. I broke my finger in July. But, most of all, this year has been eclipsed by a strain of bacteria that invaded my ear during SXSW Interactive in March. Invasive Group A Streptococcus to be specific. The bacteria that killed Jim Henson, and without sounding too dramatic about it, almost killed me.

I spent 5 days in the hospital in Austin, had surgery there to avoid my ear from exploding into my brain. (I am not joking about this. I wish I were.) Feel behind your ear. There is a bone there that is a honeycomb called the mastoid process, which ventilates the ear and is very fragile. A strong infection like Strep A can bust though that like paper.

Lucky for me, I made it. I made it home, and spent several months fighting off the infection with big gun antibiotics. The net result? Severe hearing loss and a huge hole in my eardrum.

I got *some* hearing back, slowly. Certain tones picked up first, like high pitched dance beats that made me jump when they all of a sudden they came out of nowhere. While at the mall? I was a wreck. All the reverberation and voices and clamoring? Basically it was all one big sound to me.

Two weeks ago, I underwent one more surgery, where my eardrum was reconstructed from the back. The hope is I will regain almost all of my hearing in my right ear. If not? I will most likely wear a hearing aid for the rest of my life.

Which, honestly I am looking forward to, either way.

When you say to people at the store, “I’m sorry, I have hearing loss, can you speak up?” – 90% of the time the response is “It’s OK.” It’s OK? Wow. Yes, I really do get that people have auto responses, like how the waiter says, ” Have a nice dinner,” – and we all say, “you too.” I get that. I do. But my real beef is that most of them don’t actually speak up. And the interactions turn into a yelling match with me sticking my good ear into their personal space and we’re all totally uncomfortable.

Well, those are strangers.

What about when it’s your child?

Declan has been really, really, really annoyed with my hearing loss. He is a mumbler by nature, and has trouble keeping on point in a conversation. Meaning if you ask him to repeat something – he starts from the beginning. Which annoys the you-know-what out of me.

After the 50th rolled eye and big huff of the day recently, I pulled him aside… and… I tell you, I had had it.

“Would you roll your eyes at someone in a wheelchair?!?”

“Would you get annoyed if someone who was blind could not see your paintings?!?”

Sheepishly, with eyes brimming, he told me, “Of course not.”

THEN YOU NEED TO UNDERSTAND: I. CANNOT. HEAR. YOU.

CAN YOU HEEAAAARRR THAT???

Not my finest parenting moment.

But I think he finally gets it.

Don’t get me wrong. My kid is sensitive and kind. I think he fell into that trap of letting his guard down, where we always hurt the ones we love. He’s used to me a certain way – and the last year has been a struggle for all of us. He feels it. But we have friends with disabilities. He is considerate with them but also never thinks anything of it.

If I do indeed end up with permanent hearing loss, I hope that is how we’ll go on.

He’ll know how to speak so I hear him, but that’s just the way it is with me, and we move on.

_____________________________________________________________

Any suggestions?

Do you have family members or friends with disabilities?

How do you teach your children to be respect the disability without making a big deal about it?

Aimee
Author: Aimee

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Comments
  • comment avatar Laura aka LaLaGirl September 28, 2011

    You have had a hell of a hard year, Aimee! When it comes to understanding disabilities, I think kids understand them, but are quick to get annoyed with them, particularly within their own families. I guess it’s just in the nature of being kids. My girls get so annoyed with their brother, and often whine about how he gets special treatment and they don’t – once or twice, I’ve even overheard them say things to each other like, “Pablo is so lucky he has autism – he has way less homework than we do!” I don’t think that sensitivity gene kicks in for another decade or so.

    • comment avatar Aimee September 28, 2011

      I was hoping you would comment, I know you deal with this! I imagine it is hard for the kids to deal with it the same way Declan feels. How do you handle it when they aren’t patient?

  • comment avatar Gretchen White September 28, 2011

    Your 2011 has been so, so crappy, health-wise. Really, when I think about all the things you’ve been through this year, I’m in awe. You had to point-blank, firmly tell Declan the hard truth. Kids, even the most sensitive, don’t have disabilities on their radars until it effects someone they know, and even then it’s hard to grasp.

    I’ve never had a serious disability, but I was on bed rest for a month during my last pregnancy. It was hard for the kids to understand why. It was lonely for me after awhile, almost like they forgot about me upstairs. I had to request they come see me after the first couple of weeks and that stung. Out of sight, out of mind? They weren’t sensitive to what I was going through. It was more emotionally and mentally challenging than anything.

    I hope your recovery is complete. I know how much you adore music and I’m hoping you can fully enjoy every nuance again.

    • comment avatar Aimee September 28, 2011

      Thanks Gretchen. You are always so thoughtful and kind! πŸ™‚

  • comment avatar meghann @ midgetinvasion September 28, 2011

    With an autistic son, and the other kids having to be carted around to his different therapies, they get exposed to A LOT. There are autistic kids there, down syndrome, cerebral palsy, you name it.

    However, like Laura, even though they are around it constantly, they still aren’t super sensitive. They are maybe a little more sensitive than a child not exposed to it several times a week, but they still have their moments. Lindsay is Dex’s age, and she’s the one I have to talk to the most, it seems. Last week, an autistic teenage boy came bounding into the waiting room, and bunny hopped all the way across the room, yelling loudly. Lindsay looked annoyed, and later asked me why that boy was acting that way. When I explained he is autistic like Logan, she got it, and seemed to feel bad for reacting negatively.

    Being an empathetic person who is patient with people with disabilities takes practice, I think. Lots of practice.

    • comment avatar Aimee September 28, 2011

      Good points. Thanks.

  • comment avatar Jennifer September 28, 2011

    What an awful year. I truly hope your hearing recovers. Perhaps over time your son will understand.

    My mother wore hearing aids for my entire childhood. People always remarked how very loud my family was – it was because my mom couldn’t hear very well.

    • comment avatar Aimee September 28, 2011

      See, my problem is I have been lowering my voice to match what i can hear… so people can’t hear ME either. Such a mess.

  • comment avatar Monika Runstrom (@SativaBella) September 28, 2011

    After reading this, I realize that I sometimes act like Declan to my father. He has gradually been losing his hearing over the past few years (likely due to so many concerts, which is why I have started wearing ear plugs to shows), but when he says ‘What?’ I have been known to roll my eyes, or repeat the whole story again. I am sure this drives him completely mad, although he has never said anything to me.

    Now that I realize I how immature my behavior has been, I will definitely be treating the situation differently when my dad next asks ‘What?’

    Thanks for opening my eyes (and ears). I am sure my dad will be thankful as well.

    • comment avatar Aimee September 28, 2011

      Love you girl, seriously. You are always willing to listen (ha) and grow.

      And perhaps we can teach dad to have better manners than saying “WHAT?” when he can’t hear you too. πŸ˜‰

  • comment avatar JoAnn September 28, 2011

    Oh, Aimee! I’ve been watching all of this drama from the sidelines and hoping things would get better for you. I don’t have the answers, but it’s good that you were blunt with Declan.

    The truth is, unless something affects us directly, we don’t really, truly, know how to deal with it. Your friends who have disabilities are on the outside. Declan’s life doesn’t need to change when dealing with them. He’s a sensitive and kind person. As he was growing up, you showed him how to respect others by respecting them. I’m sure he was like my daughter and asked seemingly rude questions out loud around others, and you directed him on how to be respectful of others. He got it.

    BUT, this is different. When MOM can’t hear, all of a sudden, something shifts. He has to struggle with feelings that encroach upon who HE is. In his mind, he might see it like this, whether consciously or subconsciously: HE has to not mumble. HE has to get to the point. HE has to change who he is, in effect. HE can’t have things the way they were, because they’re just not. YOU have always been so powerful and awesome and the solution-finder, and even doing all YOU can do, it’s not enough to magically make things the way they were.

    He’ll get there. You’ll get there. Because, you ARE STILL powerful and awesome and a solution-finder…

    Your ability to hear may or may not be fixable. Your ability to listen is something you already possess, and it will make all the difference in the long run.

    • comment avatar Aimee September 28, 2011

      Great points, J – xoxox

  • comment avatar Susan September 28, 2011

    Aimee – I’m so sorry for the rough year you’ve had. Health issues are so tough and you’ve had more than your share of scares and bad times. I hope the surgery is successful to you. Your attitude and mindset is so strong and that of a fighter and a winner. We all have our moments of frustration with our children and say or do something to get their attention. I hear just fine and but annoyed when mine mumble or don’t speak clearly so that I must struggle or ask them multiple times to repeat. I can’t imagine the frustration if you are already struggling with your hearing to communicate with your child and hear them. You are in my thoughts. Hang in there

    • comment avatar Aimee September 28, 2011

      xo gal.

  • comment avatar Cher September 28, 2011

    When my oldest was 3, I had my first seizure a year after being in a bad car accident. He didn’t see the seizure but saw me leaving on the stretcher with my arms strapped down. I couldn’t drive for 6 months after; and every time I said “I can’t drive” or “I’m tired”, he’d ask, “Are your arms still strapped down?” I didn’t know what to say to a 3 year old. Then when he was 8, he saw me have a seizure and he was alone in the room with me (luckily not the house). He ran and got grandpa and then saw everything from the cops, firetrucks, paramedics, hospital, then back home. Every time he couldn’t hear me, he’d come check on me. One time I was in the shower and the soap shelf dropped and he ran into the bathroom. I finally bought him a book for kids to explain seizures, let him know I was on meds, and made sure he knew 911. He’s 17 and understands it much better now, but he’s still very protective of me. I think getting the book for kids really helped a lot though.

  • comment avatar Misty T September 28, 2011

    Cher— what book r u referring to? We are going thru this right now. My husband had 2 seizures back to back last Mon and luckily, my 4 yr old girl didn’t see it (Ty neighbors!). I’ve tried to explain what happens when daddy gets sick, but any advice would be so helpful. We are so scared of another one happening and I want to protect everyone.

  • comment avatar LisaOnTheLoose September 28, 2011

    So sorry for all of the health issues. Wow. That’s a lot to go through in one year. Hope this next surgery goes smoothly.

    I was just talking about this with my 9-year-old son too! (Well not the hearing loss part.) He’s used to autistic kids. He’s got two good friends with autistic siblings. But this summer he had camp with a kid whose arm wasn’t fully developed (I can’t remember what the condition is.) He was a little scared of the kid at first. But we talked about it. I encouraged him to get to know the kid, to talk to him. Throughout the course of camp, they became friends.

  • comment avatar Darrell Delabarre November 28, 2012

    Autism is still a mystery to doctors since they cant exactly pinpoin the main cause of it. :

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