Monday, August 20, 2012

10 Things You Should Never Say to a Special Needs Parent

Many of us special needs parents receive stares, comments, and unsympathetic annoyance from onlookers - strangers who have no basis from which to judge our situation.  Sure, some of them have kids or may even know someone who has a child with special needs, but unless you walk in our shoes daily, you have little right to judge my child.

At least, that's what I tell myself as I turn my back, attempt to soothe a screaming 3.5-year old, and walk away, knowing that the likelihood of ever encountering that same inconsiderate individual again is probably slim-to-none.

What happens when the comments come not from someone who doesn't care and is separate from your situation and devoid of knowledge of your day-to-day life?  What happens when the comments come from your own family or close friends?

Unfortunately we all get them, so I've put together a list of the things that you should never say to a special needs parent, no matter how well-meaning you are:

1.  "I don't know how you do it!"  I realize that most people intend on this being a compliment, but I think that most people also don't think about what they're saying when they say it.  What alternative do I have?  Of course I do all of this...I have to do it.  You would too if your child had special needs.  It's just life.  Sometimes life hands you everything you've ever wished for.  Other times, you get put on a detour.  Sometimes, you wind up hundreds of miles away from your destination, but life goes on, and so must we.  So, I respond that I'm not a super hero or anything like that; I'm just a mom, and I'm doing what I think - what I hope - every other mom would do with a child with special needs.  Maybe we all do it in a different way, but we all do what we must for our children and our families.  And you could, too, if you were in my position.

2.  "He doesn't look autistic."  What does autistic "look" like, exactly?  To my knowledge, kids on the spectrum look like everyone else.  They have good days and bad days.  Many of our kids have invisible disabilities.  If you were to look at a picture of my boy, you wouldn't see a feature that screams autism.  You'd see a ridiculously adorable little boy (and yes, I'm shamelessly biased).  I'd urge you not to judge kids based on appearance alone.

3.  "The only way you can be sure you won't have another child with a disability is to not have any more kids."  Okay, this statement has never been said to me by a physician of ours, but I have had several people volunteer this to me in passing.  First, I should say that I find it wildly inappropriate when people ask you about when you will have children or if you'll have more children, special needs family or not.  It's an intensely personal decision and there are often factors that go into it that you don't want to share with the world.  I'll volunteer to other special needs parents who have wanted to hear opinions on it, but usually that's it.  People often want to know if we'd consider having more kids, and they often have heated ideas about it.  This is one of the responses I get.  I understand that it's true, but do you really need to tell a special needs parent that it might be best if they considered themselves to hit a reproductive dead-end?  I know people have morbid curiosities about whether or not we'll have more children, but I tend to feel like this falls into the category of "Nobody's Business".

4.  "It looks like he doesn't know how to get along with other children.  Maybe you should put him in preschool or a play class?"  I get this exclusively from people who don't know that Jack's autistic.  They'll see how he is around other children and suggest that perhaps I haven't exposed him enough to other children (not just typical ones, any children) and that he might need a lesson in sharing and caring.  After all, I obviously haven't tried to teach him social skills.  My son had been in Gymboree or some play group setting continuously since he was 6 months old until he was nearly 3 years old.  At that point, we switched to a special needs play group because the other kids were leaving him in the dust and he was going to be stuck in a class with kids significantly younger than he.  If that was the answer to his problems, he wouldn't be autistic, because he's been doing this for over 3 1/2 years.  Now, we did at one point - before he was diagnosed - try to enroll him in preschool, but the preschool told us that their program wasn't the right place for my boy.  He's in preschool special education now.  However, it hasn't helped his social skills so far, so thank you for the advice and for making me feel like I haven't done enough for my kid.

5.  "Is he on any medication?"  I actually had someone ask me that at a birthday party when they saw my son melt down and I had to explain that he's autistic.  This again falls into the category of "Nobody's Business".  Really, unless you are a healthcare professional or someone else who absolutely needs to know (or another special needs parent who is curious as to what we do for our boy), I'm not going to share with you what, if anything, my child is taking.  That's between me and his medical team - not a rude stranger who thinks that my child's behavior warrants medication.

6.  The "R" Word.  I've talked about this before, but just don't do it.  My son was called this once, and nothing has ever hurt me so deeply than this callous remark by an ignorant person.  Nothing, and I mean nothing will make me take on the appearance of a deranged banshee faster than calling my kid this.  Seriously.  This is not the term that is used these days and the only way in which it is used is in a derogatory manner.  If I hear you say it, you'll likely get a verbal punch in the head from me.

7.  "That is the funniest thing I've ever seen."  When my kid is wigging out, laughing at him, as tempting as it may be to you, makes me feel awful.  When my son is having a meltdown, he is stressed.  He can't let people know what's wrong.  He is vulnerable and he isn't in control of his body.  His body is in fight-or-flight mode.  It's not funny; it's a snapshot of a very upset, scared little boy.  My kid can't help it or control it when he has a meltdown, and hearing you laugh is incredibly disrespectful to my little boy.


8.  "Why can't he have a cookie?  Just one won't hurt him!"  When we're out and about, people try to push food on my kid like he were a starving child.  However, giving him a piece of food - like a cookie - that he doesn't eat will at best cause him to meltdown and at worst cause him to choke or throw up.  What I wish is when I say "No, thank you" to your offers of treats, people would say "Okay!" and drop it.  I really don't want to have to go into the specifics of my son's sensory issues, oral-motor weakness, and feeding problems.  I don't want to describe his feeding disorder or what dysphagia means.  It's exhausting to have to explain it over and over again and - quite honestly - it's no one's business.

9.  Your kid's not potty trained, yet?  My kid was potty trained before he was two.  Maybe you should ditch the diapers and force your kid to sit on the potty for hours a day, because it worked for me!  Good for you that your kid was potty trained so early.  Mine is 3.5 and we're not even really starting yet.  It's fairly low on our radar.  Potty training requires a certain level of communicative ability that my child lacks and, realistically, may lack for a while longer.  He also lacks a sense of when he has and has not gone to the bathroom, which makes awareness for not only toileting needs but - more fundamentally-  diapering needs difficult to achieve.  Making me feel bad about it won't make it happen any faster.  Believe me, I wish my kid was potty trained, but I'm not going to stress him out about something that he's developmentally not ready to do.  

And finally - 

10.  "Your son is autistic?  I'm so sorry."  I get that people mean well with this, but I'm not sorry that I have an autistic son.  My life took a detour and they sympathize with that.  However, if having my child - my angel - means that I have an autistic child, I'll gladly take him any day.  Why?  Because he's perfect in my eyes.  He has challenges.  He struggles.  I would take those struggles from him in a heartbeat, but he is who he is - disabilities and all - and I would have a different child if that wasn't a fact of his life.  However, don't pity him.  Don't pity me.  My life isn't awful.  It's not worthy of pity.  This is our reality.  Don't give pity; give understanding.  I don't want a different child; I want my child and I am so grateful that he's all mine.

As I have presented the world with a laundry list of what not to say to a special needs parent, you might be wondering what should be said.  People feel the need, in so many cases, to say something.  Sometimes, especially when it comes to encountering a parent who is bearing her soul about her child's disabilities, the best thing to do is simply listen.

To the people who are not special needs parents, you may be wondering what, if anything, you can say.  For those people who feel the need to say something, ask about the child's condition.  Ask their parent to help you learn about their condition so that you can help educate others and so that you can better understand that child's needs.  Extend your friendship.  Suggest that your kids play with their special needs child.  

Be a listening ear and an empathetic friend, because so often, that's what we need most of all - someone who will just listen.

Please share your thoughts and add to this list.  What other comments should someone never say to a special needs parent?  Conversely, what would be the right thing to say?


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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3-year old little boy on the autism spectrum.  After her only child was diagnosed at 24-months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  To follow more of her ramblings, like her on Facebook!

7 comments:

  1. My favorite:

    Most 3YO are like that

    This is how I would like to reply:
    Really? Because Allie was once a 3 year old and she never escaped the back yard, the car seat, the class room, etc... Allie must not be the neuro-typical child after all.

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  2. I've heard " I don't think he has Asperger's,I think you need to discipline him more and he'd be fine." Okay,so how will disciplining him help his sensory issues? How will it help him sleep at night or not be scared of loud noises? Apparently I missed the parenting class that taught that sensory issues and meltdowns magically disappear when a child is given a time out or a spanking. I have heard it more than once and it drives me crazy.

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  3. While I have never been told #3 before, I remember sitting at family functions and listening to cousins my age asking each other when they were going to have their second, and never asking me or making me part of the conversation. It always made me think that the absence of that question was a silent statement of "you shouldn't even think about having another child."

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  4. We adopted a child with Shaken Baby Syndrome who was born meth addicted as well. My favorite, he will outgrow it one day. How do you outgrow abuse. We are now in the process of adopting a child born addicted to herion, may have CP, be blind, and has the chance of Hep. C, not to mention other things. I haven't told my friends with "normal" kids much. I tried to explain to someone a bit about it and their response was I was a saint and who would want to parent that willingly. I think I cried for an hour. It is a privilige to parent these beautiful children. I am not a saint, just a person who can't have kids and wants a family. I can think of a few more, but it just hurts too much right now. I am hoping I can look back on it one day and not have it hurt so much.

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  5. I am sick of the judgment. Isn't he medicated? He talks like a robot. He shouldn't be chewing on that, he isn't a baby. Four years old and not potty trained. At church, he can't be in here with the other kids. He is going to be a juvenile delinquent. I guess they just think we are rotten parents. My son was born addicted to heroin and who knows what else he was exposed to in utero. He is actually a loving, sweet kiddo who was created for a special purpose by God.

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  6. #10 hit home. My son doesn't have autism but had a cousin was tell me that the fact he has special needs is "sad". I flipped out and demanded she explain to me what was sad about my child.

    Also, please don't try to sell me/tell me about the latest snake oil you or your friend is selling that will "cure" my kid. He's not sick, he doesn't need a cure and I don't need to spend any of my hard earned money on some BS product that has supposedly cured autism, SPD, ADHD, etc. If it cured it - it would be all over the news. Parents and the mfr would be shouting from the highest rooftops. Please don't insult my intelligence!

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  7. Sweetie,

    If it's any consolation, I think all parents go through the judgemental nonsense (mostly from people with no kids or grown kids, who forgot what it's like), especially when the children are young and you, as a parent, are still sensitive enough to these comments because you are still learning to parent. I hated that.

    One thing I learned quick: Every child is unique... and none of them read the books on what they were supposed to do or be. You know what they're listening to? Their inner self, which is something I think we all need to do a little more often.

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