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What NOT to Say About Autism: Special Needs Living
November 12, 2009 at 7:00 AM by Cafe Sheri - Comments (14)
This week, aurorabunny, 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
by aurorabunny
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?
Previous Special Needs Living posts from aurorabunny:
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
FILED UNDER: developmental delays
Comments:
I'm glad you guys post these. Aurorabunny is a good friend of mine, and has never made ME feel alienated or lesser for NOT having an autistic child, as odd as that sounds.
I wish all moms were as open to honest questions as aurorabunny. Sometimes it's hard to know what to do around other peoples' special needs children, because every mom reacts so differently.
Great post and thanks aurorabunny for sharing.
I also want to say that I appreciate, more than I can even express, the great advice I've gotten from moms on here without judgement. When it comes to parenting, I love when a mom can say, well this is what I've done and it's worked for me...without pressuring me to think the same way they do, allowing me to make my own choices, but at the same time shedding some light on ways it's worked for them. aurorabunny is one of those moms who has given me great insight, so thank you and thank to the other moms who have too. You know who you are! ;)
Thank you guys so much for the sweet feedback, Christie and Michele! And aidensmomma I agree that celebrating our childrens accomplishments, no matter how different they might be, are so important.
Funny enough, Ranaaurora and I used to go at each others throats on journals about autism. I thought she totally didn't understand anything about special needs kids and didn't want to; I think she felt almost like I thought I was better than her and anything she would say would be taken wrong anyways. It turned out to be really a misunderstanding, as best as I can explain it. Now she and some other ladies I have met on CM have given me some of the best advice that has really helped my son and my parenting despite the fact that they don't have children with autism. I think even if you have a special needs child that it's really impotant to keep good friendships with people who don't. I get so used to living in the bubble of the special needs world sometimes that friends who don't have special needs children can often give me really good advice and tips that work wonderfully and I may not have even tried them because they weren't in an autism book, just as an example.
Great post, aurorabunny. One thing that people say to me that irks me is "He's autistic? Are you sure?" Um, yes. He's only 2, so alot of what he does may seem like typical toddler stuff to those who don't have much experience with special needs kids, but those people only see a "snapshot" of my son. They don't live with him and see the other stuff.
Patsfan, I TOTALLY should have included that one. I think I forgot about it because we are finally past that point of people saying "Ohhh, he's too young to know whether or not he has autism." But we got that A LOT. Even from pediatricians. We got Brody's autism diagnosis at only 15 months old so people who weren't very informed were verrrry skeptical that we could possibly know he had autism at that age. When people really questioned me I told them they were welcome to get in contact with the neurologists and doctors at the University of Kansas who diagnosed him and that shut people up pretty quickly.
But it made me mad that I even needed to defend myself. People are so rude. I mean if someone told you that their child had cancer would you be like "They look pretty healthy, are you sure?"
I've had some horrible comments from other people about my son. Even at my OB GYNs office, the receptionist was like "is he autistic". He did have some nasty meltdowns, but now it's not okay to get a check up when I'm pregnant, I even had one guy say that he had a broom stick in his car to beat my son with, he didn't like his meltdown, I was in line to check out at Marshall's, I was even next, it's not like I was shopping during the meltdown... I made an equivalent offer to the old guy.. he shut up and took a few steps back.
Personally, I smile when I see another kid with a meltdown, it makes me feel not so alone.
My son has ADHD and before the GFCF diet he was in the Autism Spectrum, since the diet, he's not!! (not a fun diet but it worked for him).
Both my husband and my dd (17) are on the ASD and few people know. Because I live in small town (not even qualifies for a population sign), everyone KNOWS everyone elses business and sits in the bar and tells it (ever play operator?) with changing information. We have kept it mainly to ourselves so "the judgement" would not be passed on them and get treated differently. I have learned so much through our lives together and have been so blessed BECAUSE of the challenges we face TOGETHER. But, everything I do is tweeked a little to make accomodations for their learning styles and mine. I figure most people go through life not paying any attention to how their loved ones think, feel, process, respond....so, I feel I have am more compassionate and a better listener because I have learned to be. And, my ASD loved ones TAUGHT ME that.
I often feel many parents think just because their child has ________ or their child is (insert personality type) they should be exempt from teaching their children respect, manners, honesty, compassion etc....it seems to me many of the "normal" children are more rude and disrespectful than any ASD child I have ever met, and I know they (the "normal" children) have meltdowns too. =) Thanks for the post!
3Bearsmama thank you for the comment! I totally agree with you. I will continue to try and teach all of those lessons to my son because I have very high expectations of him!
The one comment I really hate is, "Oh, your son has autism? I'm soo sorry!!"
Like he is a burden or is dying or something.
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I've had family members compare my son to other "normal" children. He's different get over it and celebrate his own achievements.
aidensmomma508 Nov. 12, 2009 at 9:03 AM