What Not To Say to a Parent of an Autistic Child

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What Not To Say to a Parent of an Autistic Child
As the prevalence of autism increases, many are finding themselves in conversations with parents of children with autism and not knowing what to say. People are good. They want to say the right thing. They want to encourage. They want to offer hope. My son was diagnosed with autism seven years ago and it has taught me how wonderful people truly can be. In their efforts, though, sometimes the things they say have the opposite effect of their intentions…

1. “He can’t be autistic because…” I heard a million reasons why Casey couldn’t be autistic when we were in the process of getting him diagnosed. They ranged from “He just looked me in the eyes!” to “He’s nothing like Rainman!” Parents have a hard enough time coming to terms with their child’s diagnosis all on their own. We spend months saying those very same things to ourselves. Then we get to a point where we know that what we are doing is right and seek out help. Having to constantly defend what we are seeing is taxing during a time where we don’t have much left to give. Autism comes in all shapes in sizes. It’s a spectrum of abilities and disabilities. It’s never the same in two children with the same diagnosis.

Instead, say: “I’m new to autism; can you tell me more about it? What’s Casey’s autism like for him?” I love when people ask questions. It means that they are stepping outside of the stereotypes they know and are really wondering what autism means to us. It means they care and they want to learn more about my son. I don’t expect everyone to be an expert on every diagnosis out there. What I needed most was for people to just be there for me. After Casey was diagnosed, one of the greatest things said to me was, “He’s still the same kid he was the day before he was diagnosed.”

2. “He’ll probably grow out of it.” It’s been seven years since my son was diagnosed. He has not and will not grow out of it. He was born this way and his autism is a huge part of who he is and what makes him amazing. He has achieved so much through his hard work and through the talents of many amazing teachers and therapists, and he will continue to be autistic. Saying he’ll grow out of it discounts the hard work he has or will do. It also discounts the many good things his autism adds to who he is.

I want people to accept Casey for who he is, autism and all. I love it when people accept his quirks and even embrace them. My friend Erin has always done this. For a while after we first met, Casey would greet her by running headfirst into her. So she would turn around and do the same thing to him. It made him giggle uncontrollably.

I love it when people embrace him. I love being asked what Casey likes. I love it even more when people ask him what he likes. Anyone who is around Casey for longer than ten minutes ends up loving him for who he is, and that’s not in spite of or because of his autism. It’s because he’s a great kid.

3. “I read that autism is caused by…” Please. Please don’t tell me that you’ve found yet another study that says it’s the mom’s fault. Please don’t post it to my Facebook wall that my being a little overweight or my living by a highway caused my son’s autism. I feel enough damn mommy guilt as it is. There is a new “study” published every week. I’m a fan of good research. The problem with these studies is that they are correlational. Correlation between two things does not mean that one caused the other, as is erroneously implied. More and more, the cause of autism looking to be all genetic. But, if you’re slightly masochistic or just enjoy a good argument, mention either side of the vaccine debate. See how that goes.

4. “I heard that you can cure autism by…” Oh, you are stepping into a minefield with that one. This has to do a lot with number three, above. We don’t know for sure the cause, and there is no cure. In fact, using the word “cure” in conjunction with autism pisses A LOT of adults with autism off. They like who they are, autism included, and do not want to be cured of something that makes them who they are.

Beyond that, there are too many shady doctors out there peddling snake oil treatments at an obscene cost. The “treatments” range from the benign waste of money to just downright dangerous. You can find everything from bleach enemas (I kid you not, ask Jenny McCarthy!), hyperbaric oxygen chambers, chelation, to funky saunas (You know, because people with autism love being enclosed in small, dark and hot rooms). Too many times people, whether they be celebrities who think they are doctors or doctors who care too much about being a celebrity, act as if you’re not doing everything they are doing, buying every one of their expensive and unproven treatments, you are not a “warrior mom” and you’re not trying hard enough for your child. I’m sorry, that’s bullshit.

Most parents go to great lengths to treat their child’s autism and to give them the best chance at being their best selves. My son has had speech, occupational and physical therapy since he was 18 months old. We tried alternative diets, but they didn’t work out for my son. These were never in an attempt to “cure” him, but to help him have the best chance at success, however that comes to him.

I’m always grateful that people are paying attention to autism related stories. It’s really nice that people care enough to want to have a dialogue about autism. I’d much rather have you say though, “Do you have any favorite books about autism? Where do you go for your information?” This is so much better than inadvertently making us feel like we caused our child’s autism and now aren’t doing enough to cure it. (On a personal note, if you say to me that “Jenny McCarthy cured her son, why haven’t you?” You’re likely to get punched in the throat. )

5. “You’re my hero!” “God knew you could handle this!” “Special kids for special parents” and other such platitudes. I swear there will come a day that I roll my eyes too hard at one of these that they’ll get stuck inside my head. I get that you’re trying to be nice. I get that you think you couldn’t do what I do. I know you want to think that there’s something amazing about me that gives me the ability to handle having a child (or two) with disabilities. But there is nothing fundamentally different about me than any other mother. I am a normal mother in an abnormal situation. I do what I do because I have to, and you would too if you were put into the same situation.

I cannot emphasize this enough: special needs kids aren’t sent to special parents. Some parents are amazing without even having a kid with special needs! Some parents just plain suck, and some of those do in fact have kids with disabilities. I am not some sort of hero. I have not been endowed on high with some sort of powers that make me any better at parenting two children with special needs than you would be if you were in the same circumstance. Like with anything with parenting, you learn as you go. You make mistakes. You cry, scream, swear and start over the next day. Saying that I’m some sort of hero puts me on an impossible pedestal that I don’t even care to be on. I am a normal mom in an abnormal situation. What I need you to say is, “How can I help?” This is the not-so-secret secret very few parents of children with disabilities will tell you: we aren’t perfect. This is hard. We need help. We need a break. We need sleep.

If nothing else, a very simple, “You’re doing a great job!” goes a long, long way.

6. “____________ ” Way worse than saying any of the items from the list above is saying nothing at all. Autism can be a very isolating disability, for both the person with autism and the family members. It makes getting out and doing family activities or sports very hard. Socially speaking, we are taught and subsequently teach our kids to not stare at and to ignore someone who may be behaving in a way that seems weird. Not surprisingly, teaching someone to ignore a person that behaves differently a lot, ends up leaving that person ignored completely.

In writing this list, my greatest fear is that in telling you what not to say, it would make you afraid to say anything at all. That is the last thing I want from this. Most parents of children with disabilities are perfectly comfortable talking about our kids. We are every bit as proud of them and their accomplishments as you are of your children. Talk to us. Ask us questions. There is nothing you can say if you are well-meaning that could ever be worse than saying nothing at all.

Comments

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  1. 1

    The Mean Mama says

    Such a refreshing read! So thrilled to find a mom who takes life for what it is. I have an aquaintance who is fighting her son’s austism like its a battle that can be won or lost. After his diagnosis she proclaimed all immunizations evil (she ignores the fact that her addiction issues could have caused bigger problems), then insisted he not be labled autistic (so everyone labeled him a behavoiral issue) they have tried hyperbaric chambers, diet, etc with no change in behavior. Sad thing is, is that the only obvious difference between him and his siblings is he doesn’t sass back!
    Kids are who they are, embrace them and enjoy them (unless of course they just aren’t nice kids, regardless of disiability)
    Thanks again for a great post!

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    • 2

      Lexi Sweatpants says

      Thank you. When Casey was first diagnosed, all I wanted is a cure because I didn’t want to have a child with special needs. This is a terrifically vulnerable time for parents, and it gets exploited time and time again by shady doctors, junk science, etc. People will stop at nothing for a cure- even when we know there isn’t one.

      I feel bad that I was that person. That I thought for even a second it was immunizations, because that information isn’t just not credible, it’s dangerous. I’d encourage your friend to read “The Panic Virus” by Seth Mnookin. It goes over all of the vaccine vs. autism debate. It’s REALLY good.

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      • 3

        The Mean Mama says

        I think I will read the book and then give a subtle reveiw where she will hear or read it. She gets very defensive, but after fighting autism for 10 years instead of embracing it, defensiveness is probably a safety zone. Thanks again!

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  2. 4

    Arnebya says

    Regarding #1, I can’t tell you how many people STILL refer to Rainman as their first reference toward “knowing” someone with autism. I’ve never understood the lumping people into categories. Even iwth an autism diagnosis, you’re right; each child/person will be different. It makes me think of stupid people who ask where I live, then ask if I know [random person] because sure, all black people know each other (and like malt liquor. This is so not an accurate analogy, huh?)

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  3. 5

    Debbie says

    Thank you Lexi for sharing what to say to parents of children with a autisum. We all need to know what to say, so we don’t blow it.

    All people (and children) are special in our own wonderful way. I have a cousin that has Wilsons disease which affects the nerves system. My hat goes off to her, because even with her own disables she takes care of others with disables. It is totally amazing what she does.
    Thanks again for sharing, it is very much appreciated. I would hate to get hit in the throat for saying the wrong thing. :)

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  4. 7

    Laura says

    This is fantastic. Thank you. I suspect the parents of any child who doesn’t fit the societal definition of “normal” understands what you’re talking about.

    You left out one thing not to do which has driven my (dwarf) daughter NUTS: Staring and pointing and acting like the person and/or their behavior is somehow worthy of being in a circus sideshow. People with disabilities or are people first, and being treated like a person is what everybody wants, regardless of their differences!

    Thank you again for this wonderful post!

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  5. 8

    Kelly says

    I have a son with autism. I’ve come to realize that constantly being upset or offended at what people do or do not say is a waste of time. You’ve set up quite a difficult needle for people to thread when talking to you–don’t say the wrong thing, but also don’t be silent. When someone says something uninformed, I simply tell myself that they are just that, uninformed, but likely well intentioned. I don’t expect people to walk on eggshells around me. We as a culture in general need to learn to let things go. Life has become a minefield of who might be offended. If someone is saying something with good intentions and not intending to offend, we should be able to let it go rather than internalizing it or demeaning the person who said it.

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    • 10

      Lexi Sweatpants says

      I agree. I don’t carry this stuff around and genuinely write it off. Like I said in the article, I know most people don’t know what to say and are trying to be kind.

      But here’s the thing, if we don’t start speaking up and saying “hey, this can be hurtful to parents of kids with autism” how will they ever know? Why not educate? Why not let people know what TO say, as I’ve pointed in the piece.

      This is why I write. To help people understand the way *I* see things and what helps along with what doesn’t. I appreciate your response here, because I believe that we DO need to give people a pass who are just trying to be nice. I think in the special needs communities (my daughter has Down syndrome…so I’m in a lot of communities) we are too oversensitive. That doesn’t mean that we can’t help people understand better what we’re going through.

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      • 11

        Angela says

        Thank you for posting these points! Our son was diagnosed with autism at age three. He’s always had movement tics, off-and-on verbal tics, and is very high functioning. It is extremely disheartening when people try to tell you “at least he’s not as bad as….” Looking from the outside in is much easier than helping your child cope with certain behaviors.

        We constantly hear the refrain from certain family members that “he’ll grow out of it…” or “that’s just a boy being a boy.” We only recently have felt some support from family after a family member watched him over the weekend with his sister. Again, thank you for posting!

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  6. 14

    Keli says

    My question is, why do I (or anyone else) have to acknowledge it at all? You want so badly for your child to be accepted as normal or for who they are. This, to me, is exactly what’s wrong with the world. Like judging a person you see in the street with 100 tattoos, or pink hair. In plainly accepting a person without addressing their “differences” we are able to accept the differences we all have. Let it go.

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    • 15

      Anna says

      I was ma’am’d by a young guy with 100 tattoos. I was just tickled to death by that :D. Everyone else standing in the checkout line were trying not to get to close to him because he looked rough, and then he called me ma’am. I haven’t been called ma’am since my Marine Corps days and it just made me smile. I was busy checking out his tattoos and didn’t notice that the line had advanced until he said something. I complimented his ink which made him smile.

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    • 16

      Angela says

      Hi Keli,
      I think so many parents (including me,) try to help others understand why a child isn’t acting as they should. Whether it’s because my son’s yelling uncontrollably or fixating on something relentlessly, we want others to feel more comfortable. When you don’t explain what you’re doing or why your son is behaving “oddly” as some people think, you get many strange looks. I don’t go out of my way to point out he’s a child with autism, but I do mention it if people start giving me funny looks.

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  7. 17

    Rebeccah says

    What I know about autism is not much. What I do know, is that this post is amazing. Honest, reasonable, relative and real. You have done your son and others in similar situations such a service by writing something so great. Thank you very much for sharing!

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  8. 18

    Christie Tate says

    This is helpful because I don’t know what to say. I’ve blundered before and I hope to remember you words when I am in this situation again. Great writing.

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  9. 19

    Grown and Flown says

    Could I add another? Don’t ask what he/she will do when they grown up. No one knows what any kid will do when they grown up and raising this potential source of anxiety with parents does not seem helpful.

    This was lovely, thank you.

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    • 20

      Mandy says

      Oh that is a good one! I would probably reply with a smart “Well he is six so right now his goals like most 6 year old boys is to be Batman or a space ranger. What exactly will your child be doing in 20 years?”

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      • 21

        The Mean Mama says

        How do we offer to help without implying you aren’t capable of getting it done yourself, I am totslly willing to lend a hand but don’t want to offend or step on toes. Usually I just say, “could you use an extra pair of hands” but not sure if that’s okay?

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    • 22

      Jennifer says

      Agreed. This is a BS question. I think the only way they are limited is by how YOU limit them. When my Asperger’s brother was getting ready to graduate college last year my grandmother started talking about him getting a job mowing lawns. I told him to forget her and follow his dreams. Why should my parents have spent all that money and my brother spent all that time and effort to get a degree just to mow lawns? Pfft.

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    • 23

      Jackie says

      I get that too…people have asked me “what will you do with your son when he is an adult? where will he live? what will he do?” my response is “i will love my son when he is an adult just like i do everyday” “he will live where ever works for him…whether it be with me or not” “and he will be able to do whatever he puts his mind and effort to do just like any other child or adult”

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  10. 25

    Mandy says

    Thank you so much for posting this. While I am not a Mom who has a child with Autism I am someone who has worked with people with Autism and this article is PERFECT! I HATE hearing how I must be such a “special person” to work in the field I do. NO. I see all people as people and enjoy seeing others succeed. It has nothing to do with trying to be a Saint it has nothing to do with thinking I can fix the world. I like helping people do what they like and my job allows that, and its so cool! I also can’t stand to hear when people who work in the field I do pretend to be experts and think they have the right to tell parents what they need to be doing better. I always reply with “No. They are the parent, this is not an 8-4 job for them, they know their child, they get to say what will or will not work in their household. No parent is perfect, every parent has bad days. It is NOT for us to say that they need to do more or better. It is our job to encourage and empower.”
    People with Autism have some really cool and unique abilities that need to be embraced. I used to work with a little boy who loved to go to the park and play with the other kids, the only minor drawback to this was he didn’t speak (much), so when the kids wanted to play with him and he was clearly interested I would go over and assist him with introducing himself and explain that he wanted to be friends and play but he really wasn’t a big fan of talking. Kids immediately embraced this and continued on while including him! It worked out great because the new friends could natter away to him and he never interrupted. They LOVED always being the center of his attention! But because I didn’t treat it like there was something “wrong” with him they accepted him and played for hours.
    I too get very angry when people act as if you just change this one thing everything will be cured! It gives parents who are scared (and like you said experiencing some pretty significant Mommy guilt) false hope, or the feeling like their child isn’t good enough just the way he/she is.
    We all have things we aren’t good at, but if we were all labeled by “This is Mandy, she sucks at math, she cant even do simple multiplication in her head” no one in this world would ever succeed. Focus on the strengths, treat all people like people and watch people soar!

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    • 26

      Lexi Sweatpants says

      I love everything you said here! I think the big difference between educators like yourself and parents is that you CHOSE to go into the field. Great educators who do it because they love it honestly change the world. You become heroes, and not because that’s at all what you set out to be…but because you change lives. My son would not be where he is today without the amazing work of his teachers. I know they don’t do it for the recognition (that’s a laugh on its own). But hell, my hats are off to you.

      So, sucker, I totally just called you a hero. But along with that, I appreciate so much the perspective you give. I automatically thought that people who go into special education are amazing. I guess that’s the same stereotype I dislike when people automatically assume I’m anything above mediocre just because I have kids with special needs.

      Also, I too suck at math. I’d almost WANT a shirt that said it so I didn’t have to constantly ask strangers to math for me…

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  11. 27

    Schyla Crown says

    I have an autistic child, I’m also socially awkward so I don’t always know what to say to people. I wish people would stop posting What not to say posts and just practice what they preach, Tolerance. pure and simple, No one who hasn’t been there can possibly understand, you said it yourself, The worst thing is not to say anything all, so take what someone says and again try to be tolerant. Special Needs parents need to have a tough skin so Elephant Up Mama put those big girl panties on and get over it. Your Kid needs you, who cares what the rest of the world says or dose. I’m sorry I know some will find this offensive but really Posts like This don’t help they just take well meaning people, who aren’t magically going to know the perfect thing you need to hear, who are only trying to show you they care, and make them feel Stupid and I know that’s not the point of these but it’s the result and again it’s only more of the same crap. If you want tolerance for your child you have to give it to other people. ~I’m a Mom of a special needs child what’s your superpower?

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    • 28

      Stacy says

      Actually, I find this kind of post incredibly helpful. I don’t have children at all but do have some friends whose children have autism. I so much appreciate the insight these posts offer into what daily life is like for parents and children both, and what they find helpful and why. I want to be the best friend I can be, but sometimes I find that my friends are tired of explaining to every. single. person what’s going on. These kinds of posts help fill in some of the gaps for me, not because they lay out the “rules” of what to say/not to say, but because I get a glimpse of what’s going on in the background, if that makes sense.

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    • 29

      Andy says

      The “big girl panties” comment is far more condescending than anything possibly mentioned here, and is decidedly unhelpful. If anything, I think a certain type of people are more offended by learning about the things that offend other people than anything else, and they flip out and beat a drum any time someone asks them to reconsider something they might think or say. As if they never dealt with learning any basic etiquette or consideration, and their Pearls of “Take it Or Leave It” Wisdom never deserve to be challenged. It’s so HAAAARD to be thoughtful and considerate. So toughen up and do it anyway, it’s a big world out there and you’ll learn a lot by not aggravating everyone with tone-deaf thoughtless comments that seek to demean other people for whatever reasons.

      There is no “magical” expectation here, it’s a list of cliches that come up and don’t tend to be helpful, and if your immediate impression upon finding such a list is to simply stop reading before the end and never talk about autism again, please do that, because that personality trait isn’t going to ingratiate you with anyone and your words then are only self-serving. There’s nothing wrong with outlining offensive cliches here and if someone is too offended by their existence to read them and perhaps consider what they say before speaking (basic social interaction stuff that we often forget with topics like this) then that’s one less inconsiderate person flapping their uninformed gums.

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    • 30

      Andy says

      Also I think the words “well-meaning” are strung together so often to justify basically this thought: “I wanted to say something so I said it, I didn’t mean to specifically offend you.” But so often the words have no actual intent, they’re just thoughtless comments, which in and of themselves are not well meaning but entirely devoid of meaning, meaningless. To often people think that spouting uninformed talking points is somehow necessary or helpful, when in reality they are satisfying their own ego’s desire to have something, anything to say about a topic. There’s a ton of terrible “well-meaning” advice out there and usually the advice-giver’s intentions are to feel good about giving advice that is rarely grounded in personal experience, not to actually have good educated advice in the first place.

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    • 31

      bev says

      I understand the point in the original post. I think what people who aren’t familiar with autism say is often unintentionally hurtful. In the same way that people say hurtful things in other sensitive situations. How many times have we *all* tried to say something in a touchy situation and it comes off wrong, or we fear it will anyhow. Which isn’t to excuse what they say, and it isn’t to say we shouldn’t educate them. I think the thing that almost *never* gets brought up is what we say to one another within the autism community that is hurtful. We are as divided as any community as any and far too many of us say hurtful things to one another based on the assumption that either we or our children are all affected by autism in the same ways. Nothing could be further from the truth. My son is non-verbal, epileptic and has other neurological issues. But they’re all part of his autism. Which isn’t some one else’s autism. But it’s still just as much autism. I’ve been scolded by an autism parent for spoiling my child because he couldn’t tolerate an alternative therapy. I’ve been told that I need to try this or that by the same folks. It isn’t any more acceptable coming from within, in fact, I find it more hurtful. I don’t care if the advice is grounded in personal experience. If it’s unsolicited, it’s unwelcome.

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  12. 33

    Jennifer says

    This post made me laugh and cry because I can completely relate. I am an adult with an adult brother who has Asperger’s. He’s 22. Last year he graduated college and he’s spent the past year like every other recent graduate- working a part time job while looking for a full-time job. While he may be autistic, he does not let his autism define him. He chooses not to tell many people and refuses to use his disability as a crutch. Yes, he has his quirks but so does everyone else. He grew up when they were first starting to diagnose autism and there were definitely a lot of struggles along the way. But through it all he has been a blessing to our family and I wouldn’t want him to be anyone than the person he is.

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  13. 37

    Patricia says

    I love this post! We are struggling with our 9yr old son and are in the process of diagnosing his “quirky” behaviours. My heart breaks when I hear he has, again, been excluded from another birthday party, when no one EVER calls to invite him over, when his “friends” always seem to be unavailable (or worse, the moms make them unavailable) to come over when he calls to invite them. Don’t these moms understand that he needs some extra leeway? I know that maybe they don’t want to expose their kid to some of my son’s colorful language or aggressive behaviours, but I need someone to be able to say, “hey, maybe he’s a great kid with some funny habits and we should give him a chance”. He’s starting to notice that kids don’t hang out with him the same way as they do with other kids and its making me sad, sad, sad. :(

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  14. 38

    Jessie says

    If one more person tells that DoTerra Essential Oils cures autism, and sends me links, and tries to get me to buy it, I will cut them. Thank you for expressing what is so hard to express as a mom. Good luck, there’s lots of moms who do understand, and are pulling for you!

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  15. 39

    Anna says

    Aw hun, I feel your “pain”. My oldest has a seizure disorder that she will have all of her life. I’m an expert on mom guilt, she’s an expert on mom guilt (she has 3 babies of her own now) and we’re doing the best that any mom can do. Put one foot in front of the other and just keep moving forward, that’s all you can do. Most people mean well, some don’t, just walk away because you don’t need their baggage as well as your own. You’re doing well if your kids are thriving. That means you’re a good MOM. That’s all that matters.

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  16. 40

    Patricia says

    I like to think that I’m tactful and thoughtful, but this post provided some great insight and advice for talking about autism and to autistic kids. Thank you for sharing your wisdom. Also, call me if you need me to smack the next person that brings up Jenny McCarthy to you. ;)

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