Parenting

Sunday, November 22, 2009

What NOT to say about autism: Special Needs Living

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This week, our Special Need Living columnist, mom to 3-year old Brody, who has autism, discusses a few of the things she wishes people would *not* say or do in regard to her special needs child or her parenting — as well as some kinder ideas for what to say or do instead.

What NOT to Say or Do to a Parent of a Special Needs Child

Overall, people have been very kind to my son and me in regard to his disability. We've never really had any rude encounters out in public so far, and I definitely can't match some of the horror stories that I've heard from other moms. I try to always answer questions that people may have and be very open about Brody and his autism. That said, there are still always a few things that never fail to get my goat.  

1. "It's so great that you do so much for him; I just couldn't do it." 

Oftentimes, this comment seems to have a bite behind it, as if the person saying it wouldn't wish this task on their worst enemy or even as if I'm some kind of saint. I think the media portrayal of special needs moms as ever-patient martyrs just makes this worse. It makes me want to respond by saying, "Oh, I just knew that I could do it, hence why I signed my name on the 'I'd like an autistic child, please' list that God was passing around." Come on, moms!

You know how much you fell in love with that little person the second you looked into your child's eyes. You could and WOULD do anything for them if you had to, disability or not. Don't sell yourselves short OR assume that I am beneath you or above you or anything other than just another mom. 

2. "To fix him, you should... [insert therapy/diet change/yoga position here]."

Treatment and "cure" ideas from moms who aren't affected by autism is very vexing to me personally. I don't mind at all if people ask questions about any of those theories, but it's just going to tick me off if you tell me that my son would be magically cured if only I would do whatever your hairdresser's cousin did with her child.

And I would be rolling in money right now if I had a nickel for every freakin' time someone asked me if I knew that Jenny McCarthy's son had autism too and that she wrote a book, which would most likely fix all of my problems.

3. Acting as if autism is a communicable disease

The thing that bothers me the most, or maybe saddens me the most, isn't something that anyone verbally says. It's when other parents rush their children along past my son, as if his disability might be contagious.

I do want other moms to know that short of comments that are glaringly ignorant ("So is he going to be like Rain Man when he grows up?"), there are no stupid questions or comments, at least not to me.

I would much rather have a mom sit down next to me at the playground and genuinely ask why my son may be doing something or making a certain noise repeatedly than just shoot us a look of pity and walk away as fast as possible. Don't be afraid to ask questions, and never be afraid to lend some non-judgmental support. Something as simple as another mom giving me a friendly "been there" smile while my son is having a meltdown is often enough to totally lift my spirits, especially since special needs moms can often feel like they're being judged a lot more harshly than the average parent.

Sometimes I think that the bottom line is as simple as something we all probably learned in kindergarten: We're all people, no matter how different we may look, act, or speak. If you're keeping that idea in your mind as much as possible, the chances of your ending up on the "what NOT to say" list are pretty slim. 

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When it comes to parenting, special needs or otherwise, what comments do you prefer NOT to hear? What comments or actions are most helpful to you as a parent?

Originally posted as part of an ongoing series on CafeMom's Toddler Buzz


Previous Special Needs Living posts from aurorabunny:

Sick Special Needs Kid Woe

Announcing Autism


Related posts:

Special Tips for Moms of Special Needs Kids

Mom to Mom: You're Doing Great!

A Mom Confronts the Possibility of Down Syndrome

Syndication:

From the Community…

Comments 1-10 of 35
  • chelsea_of_tx's Avatar
    Posted by chelsea_of_tx Fri Nov 13, 2009 9:34am PST

    GREAT article that I wish everyone would read. I see a lot of kids treat autisitic children so badly when the parents aren't looking & I think this is because of the idea & feelings planted in them by their own parents that autistic kids are rejects, or pitiful or socially inappropriate. So many people act as though autistic children should be hidden away from us & that is just wrong & sad. How can you teach your children to treat those with challenges & disabilities normally & kindly if you never allow your own kids to be around anyone different from them & different from the norm? Children often default to the most basic human instincts when they have no other experiences to draw from. That is, they simply lash out at anyone who is different than what they are or different from those they are accustomed to being around. That's a normal basic human instinct, but it's also an animal instinct, not a civilized well evolved instinct. It's a throw back to the past when we were knuckle dragging cavemen. If more parents would socialize their children properly we wouldn't have this problem. The worst thing of all that I see which this article doesn't touch on is that autistic children grow up to be autistic adults. It's not something they outgrow. I believe society acts like once an autistic child physically matures to adulthood that somehow they cease being autistic & are forced into a very cruel world where they will never fit in & always be at odds with society. The only way this will change is if parents of autistic children stop acting like their kid will always stay a kid & start speaking out to the public about addressing the needs of their adult autistic son or daughter. It would go a long way to stopping the crazy idea that autism is some kind of curable disease rather than part of who they are as a human being that needs to just be accepted by others. Genetic abnormalities, trauma & biological causes for autism are permanent. While there can be vast improvements in abilities & how we as a society understand them, the reality is that autism is permanent & will always be part of who they are & we all need to accept that as being OK. Rather than trying to change them we need to accept them as being perfect just the way they are, even if they are different or can't do the things we can. I have never met an autistic person who didn't have something that they did that I couldn't ever do no matter how hard I tried. My cousin is autistic & he makes these paper spinning things that no one else can seem to make. So to me he's perfect just as he is. We don't need to change him to make him be like us & act like us. I wish more people would see it that way.

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  • shaken00's Avatar
    Posted by shaken00 Fri Nov 13, 2009 9:55am PST

    You know what I find the most annoying? Other parents who have a child with Autism. My son is 9 1/2 years old, and I have been listening to you whiney want-to-be-martyrs for more years than I can stand. Get over your self. It's not about you. It's about your child. Shut up.

    This is followed by people with some fleeting or shallow relationship with a person with Autism. "I worked with..." or "My cousin/nephew/etc. has...." You folks can all shut up too. I don't care.

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  • Rowdygirl's Avatar
    Posted by Rowdygirl Fri Nov 13, 2009 10:18am PST

    You have a kid with special issues.. we get it.

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  • Zom-B's Avatar
    Posted by Zom-B Fri Nov 13, 2009 11:06am PST

    Posted by shaken00 1 hour 6 minutes ago

    "I have been listening to you whiney want-to-be-martyrs for more years than I can stand. Get over your self. It's not about you. It's about your child. Shut up."

    THANK YOU!!!!!!!!!!

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  • me's Avatar
    Posted by me Fri Nov 13, 2009 12:50pm PST

    Wow those last couple of comments are awful! These women are breaching awareness and her first point was don't think she's doing anything better or differently than you would if put in her position. All of these comments can and probably do affect the mom thus affecting the child. Get off it and if you ahve to be so negative. Shove it!

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  • shaken00's Avatar
    Posted by shaken00 Fri Nov 13, 2009 2:40pm PST

    To "me"-

    As a mother of a child who is on the spectrum, I can tell you from personal experience that all the "awareness" has done jack-crap for my son or any other child.

    This blog is a big whine about what this mother has to listen to from ignorant people. People will always be ignorant. I can prove it. Talk to those same people about any other topic.

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  • anh's Avatar
    Posted by anh Fri Nov 13, 2009 3:57pm PST

    How about a child perceived as having a disability because of the way they look? Then imagine growing up being treated that way, even though you act normally. This is such a superficial society! People freak out about what they imagine you can't do because they only think in terms of what they imagine THEY can't handle in themselves--and refuse to admit to that, because they don't want that responsibility...

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  • Angelique's Avatar
    Posted by Angelique Fri Nov 13, 2009 4:09pm PST

    I do know exactly how you feel and I would most definetely give you the "Been there" look. I get very frustrated by people in public and even my extended family. My son was born a micro premie (which the say is the cause for everything he's been diagnosed with) and while he's not specifically diagnosed with Autism but rather "A child of the Autistic Spectrum" and I don't even get the point of that phrase. He's also Developementally delayed with an IQ of 65, Bipolar,diagnosed also OCD, ODD & PDD. He doesn't have friends, his cousins can't stand to be around him and I've heard every comment imaginable about how to either "Fix" him or what I could be doing better and yes; I also get the "I could never handle what you go thru" pitty speech and no, I'm not a saint either. I'm a regular, full time working single mom, who gets frustrated just like anyone else. My son is almost 17 and is still very child like.

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  • Alexus's Avatar
    Posted by Alexus Fri Nov 13, 2009 5:56pm PST

    I have a brother who has autism and what really gets me mad is the school system.They take advantage of special needs children because they get paid for every disability that they have.These people who worked with my brother and a group of other kids with various disabilities are extremly,honestly stupid when it comes to dealing with these children.They even on several occasions lost a kid while on a feildtrip to the galleria.If you don't know,that is a three story mall with two sections.Yeah,they lost a kid there.

    People like them and those people who claim they "understand" what it's like to deal with an autistic child because their sister's,neighbor's, cousin has a freind who's kid has autism really piss me off as well.If you don't live with the person,or see them on a daily basis and have regular interaction with them,you don't understand,so don't claim you do.

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  • Lasombradia's Avatar
    Posted by Lasombradia Fri Nov 13, 2009 8:43pm PST

    I am sorry, its easier to look at you with pity and hurry off, than watch your child have a melt down in the middle of the store. I dont understand, I cant comprehend, and I cant empathize. I do admire your strength.

    So guess what? I run for cover. somewhere away from you and your child.

    Or I can say something stupid. Take your pick.

    Some people just don't know what to say and by your blog, they say the wrong thing. Well some people do try and your burning them for trying.

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