Wednesday, September 18, 2013

I'm not a great parent just because I have a kid with special needs


The woman smiled at me as I walked by. "I just wanted to say that you two are excellent parents," she said.

We were hanging at a "leapfrog" pool where kids could jump onto giant green pads, swinging themselves from an overhead rope. Max can't reach his arms up that way so Dave was carrying him from pad to pad, Max was loving it and I was standing on the sidelines cheering them on.

We hear it on occasion from strangers, kudos for parenting Max. Chances are if you're the parent of a child with special needs you've heard it, too, especially that well-worn phrase "God only gives special children to special people." Perhaps you caught that story the other week about a diner who paid for the meal of a North Carolina family that had a child with special needs, then left that message on their bill.


I know people mean well, and it sure beats pityspeak and stares, but this thinking always takes me aback. The help we give Max is part of parenthood; we just happened to get a kid who needs extra assistance. When people admire me or Dave for the simple act of parenting Max, it makes me hyper-aware that they think it must be so tough—a burden, even—to parent a child with special needs.

Considering parents of kids with special needs to be saints overestimates us, and underestimates our children.

Look at it this way: If Max were your average toddler and Dave was in the pool helping him move around, would the woman have said a word about what amazing parents we are? No, I'd venture, she wouldn't have. That's what parents of toddlers do, right? She deemed us "excellent" parents because Dave was moving around a child who was physically unable to do it himself and I was happy to see him happy. That doesn't make us excellent—it makes us parents.

Really, Max deserves the kudos. He's a cheerful, loving, quirky, bright kid who's a lot of fun to be around. Parenting him isn't some magnanimous act we do out of the goodness of our hearts; he's our child. We feel the same about Max as we do about Sabrina: We're every bit as lucky to have them as kids as they are to have us as parents.  

I am not saying the gig isn't draining at times; it is. I give Dave and me props for juggling all of Max's doctor and therapy appointments and still managing to keep it together. (Well, most days). I give us props for doing battle with the insurance company to get said therapies paid for. I give us props for the physical labor; Max's cerebral palsy means he still requires a fair amount of lifting. I give us props for building a great team of experts to help Max. Truth is, though, parenting in general takes a lot of work; Sabrina, my so-called typical child, has plenty of special needs, too. What I don't need is acknowledgment from strangers who assume we rock just because we're raising a child with disabilities.

Part of my struggles here come from a desire for our family to fit in. If you meet us at the pool or the park, chat about the weather, how old the kids are, my amazing bikini bod (somehow, that never happens)—you know, like you would with any parent of any child. Exalting us can make us feel even more alienated from other parents than we already do.

Putting a halo over the heads of special needs parents could actually do kids harm. What if I were a bad parent, the kind who abused her kids? Would it go under the radar because people assume I'm good simply because I have a kid with special needs? As Rick Smith of Noah's Dad pointed out in a recent post, "I've talked to more single mothers than I want to count whose husband divorced them after their 'special' child was born. Divorcing your wife or abandoning your family isn't something a 'special' (good) parent does...."

I'm a fine parent, although I have my share of mom fails: I yell when the kids get on my last nerve, sometimes let them watch too much TV, allow them to skip baths when they ask because I need a break. This is called real-life parenting, the only kind I know. I am not supermom, super-human, super-saintly, supercalifragilisticexpialidocious. In many ways, I am a mother like any other mother. In many ways, Max is a child like any other child. I'd so like people to see us both that way.

What I said to the lady at the pool was, "Thanks! We do the best we can, like any parents." And that's exactly the way it is.

Spare me the kudos for being Max's mom. I treat him the way other parents treat their kids, with or without a disability. We enable them, we help them thrive, we make sure they're having a whole lot of fun. It's called: parenting.

41 comments:

  1. Amen Ellen :) Like I said in a post I wrote about this topic "I don’t believe God only gives special children to special people because I don’t believe there are any “special children” or “special parents” we are all people with challenges some people’s challenges are just more visible than those of others."

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    1. Nisha, I love your take on this. Very true.

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    2. Couldn't agree with you more!

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  2. I hear that saying a lot and couldn't agree more. I think people say it because they don't know what else to say. I try not to let it bother me because I know the intention is kindness but... still:)
    I agree that even though our family is "different," at times you just want to be treated normally and go about your day... and when people say that it kind of implies, well, you're not.

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  3. THANK YOU for this post! We are on the same wave-length on this topic; SO MANY people have said to me that we're "special" parents because we have Kyle as our son. Like you, I know they mean well and I tell them thank you but really...almost any parent would do exactly what I do on a daily basis if they happened to have a child with special needs.

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  4. Ellen, I totally agree with almost all of what you said. Although I love a compliment (no matter where it comes from and whether or not it's appropriate) in place of an awkward stare or worse. The only thing I a tiny bit disagree with is the "We make sure they're having a whole lot of fun". I so often hear things like, 'Wow! You go out and take him to do something fun every weekend and day off?'. You betcha I do! So much of life is work for him and for all of us (good work, but still not easy) that we are most certainly going somewhere and having fun any time we can. I'd like to think I'd just do that as a part of parenting, but I'm starting to think it may have something to do with parenting my kiddo with super powers (yep, stole that from you). Maybe not but it's an interesting comment I get a lot.

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    1. Totally with you on packing in as much fun as possible! Few things are better in life than seeing your kids having a great time. Tonight, Max was playing cops & robbers with some kids and his happy squeals made me laugh.

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    2. Love it!! And thanks for sharing the other commenter's blog post. It was great!

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  5. Amen to this. I saw that photo on a CP Facebook group and ALL of the responses were *its inspiring* and so on. My response was I hate that stupid phrase.

    Whenever I hear it, I want to hit them hard. I know thats harsh and I'm sorry but I get so annoyed. I'm no saint, I swear a lot in front of Abby.


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  6. Yes! An acquaintance on facebook tried to tag me in a picture of the receipt when it made the news. Anytime I hear it I want to say (among many things) have you seen the number of special needs children in foster care? Were they not special enough for special parents? I know they mean well, but it get so tiresome.

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  7. You always hit the nail right on the head. This. Exactly. Yes.

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    1. You should know, Jean, given that you are a master nail-hitter-on-header.

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  8. i hear you. but in your specific case, the "you're awesome parents" line could have been more specific than dreary-noble-general-heroic. i have been known to help my children on the playground while my face was visibly elsewhere, while being crabby and sigh-y. and when my kid is on the monkey bars and yelling "watch me watch me" i have been known to take a little vacation behind my eyeballs. they are POINTED at my child, but not actually engaged or entertained. SO teh charitable way to look at the woman's comment (which, granted, MAY NOT HAVE BEEN HER INTENT) is that she was noting your cheering and dave's good-humored focus. which you might have displayed with sabrina, too, but you happened to be doing it with max.

    or yes, maybe she was trotting out the tired trope about parents of kids with challenges being innately noble.

    BUT MAYBE YOU WERE SHOWING ACTUAL AWESOME PARENTING!

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    1. "Taking a little vacation behind my eyeballs" is my new most favorite phrase of all time. I was reading an article today about Google Glass; seems like if you got your hands on a pair, you could go on a nonstop vacay behind your eyeballs. Thanks for your wisdom, as always. Sabrina was right there too so I did think this was directed at our caring for Max. That said, I will admit (um, actually it's pretty clear from this blog) that I do get sensitive to how people view Max and sometimes I need someone to slap me upside the head and say maybe it's not a special needs thang.

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  9. It's like you read my mind. Actually, literally snuck into my brain and looked around and wrote this post. Thank you. THANK YOU.

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  10. Ellen - Great piece. As I talk to Dads for my project and read a lot, I find this is a common theme. Nice take on it!

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  11. Ellen, I have been reading about you and your family for some time now. My mother in law was in a somewhat similar situation with my husband when he was born, he has CP. I read your writing and feel a bit closer to her. She doesn't speak much about her struggles as parent of a disabled child and 2 'normal' children in the 80's, so I sometimes find it gives me a small amount of insight into what she may have gone through, and how my wonderful husband and his life have helped shape her into the woman she is.

    And the 'great parent' comment? I get that comment all the time, about what a 'great person' I am, because I looked past the wheelchair and the physical limitations, and chose to marry my DH anyways.

    https://www.facebook.com/notes/amanda-livingston/lets-get-something-straight-here/10150601022815686

    If the link doesn't work, I may repost a comment including my note. I wrote this about a year and a half ago, to clarify why marrying him wasn't what made me a 'good person'.

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    1. This is an amazing post—really worth a read, people. Amanda, I particularly loved this line: "Next time you see someone who looks a bit different, redefine what 'normal' looks like to you. Cause let me tell you, Andy may be in a wheelchair, but he's more 'normal' than most people I'm ever going to meet in my life." I am going to Facebook right now and sharing this. So glad to connect with you, even if over something annoying!

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  12. Yep. Thanks for speaking for so many of us "just" parents! We love our kids no matter what!

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  13. PS. From all I read you really are one heck of an awesome mama with super awesome kiddos/family...and not b/c of any abilities your kiddos have/are working on. But because you are! :)

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    1. Thank you for that. I don't know if I merit "awesome" but I try my best, and that's all I can do. Although if by "awesome" you mean tracking down every known piece of Cars 2 merchandise on the planet for Max, then yeah, I am awesome.

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  14. Great post. And I completely agree with your comments about the "God only gives special children to special people" comment -- bugs me. However, I will admit that it is sometimes more physically and emotionally tiring to parent my child with special needs than it is my other children (she is similar to Max in some ways -- screaming and such -- but additionally cannot walk on her own). It actually boosts my spirits sometimes to hear the occasional "good job" or to see the sincere, kind and sympathetic smile. Some people approach her and talk to her simply because she is in a wheelchair, and I love that. (Most ignore.) You're absolutely right that I do it simply because she is my child and I love her -- but I don't mind people acknowledging that. :)

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    1. Some days, I feel like I deserve more kudos for parenting Sabrina because she's one tough cookie!!!

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  15. Ellen I fully understand where you are coming from. Many times I do not see myself any "different" than any other parent, but there are others that don't see it the same way.

    People use terms and phrases that mean different things to everyone. I cannot even count the times that people have made comments that meant something different to myself and my wife, but we see that as an opportunity.

    When people use these phrases or comments, I use it as an opportunity to share a "special" message with them. And this is not confined to just our 4 year old Down syndrome daughter, Fayth. This applies to our son as well. I see it as a conversation starter. It doesn't matter that I agree or disagree, but now I get to share a message with them.

    I just see these as opportunities for others to see through different eyes.

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    1. Totally with you. Over the years, I've learned to use all sorts of situations as conversation starters about Max/special needs, including when he gets stares. But sometimes, I don't go there because I just want to be in the moment with my family, like at the pool that day.

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  16. Hmm, I can't help thinking that everything I read of yours brings me to the conclusion that you are indeed an excellent parent. Not because Max has CP, but because you are caring, engaged, informed, loving, motivating, compassionate, wise (I could go on). Human, of course, but I don't think having a superhero for a parent would do anyone's self-confidence much good.
    Maybe the lady at the leapfrog pool just had a good eye for character?
    I entirely agree about the "special parents for special kids" thing though, how absurd.

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  17. I think good parents are ones that do their best support and love their kids regardless of their abilities.

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  18. I couldn't agree with you more. I like what Lynn wrote. I think you guys are pretty amazing too. While I do appreciate compliments and I know that people who say these things often mean well, I worry more about how my Emma processes these comments. What message is she getting from statements like this. Does she think, "Wow, I must be a lot of trouble for that lady to say that?" I know I would have at her age. She is nine. (She has CP and is very physically challenged, but very bright. She hears everything. I call her scoop.) I never want her to feel like she is a burden because of her challenges and that people think her dad and I deserve praise for being her parents. She is an amazing kid, and we love her. We are very proud of all of her accomplishments. Like all kids, she deserves the best we can give her. I wish that when people say these kinds of things they would add a compliment for Emma too or instead. I always love it when people to talk to her and say things like, "Wow, I like your cool shoes!" or "You are a pretty girl!" Anything really!

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    1. Comments like this still go over Max's head, but sometimes even when he's standing right there people still talk about him as if he's not. I usually just say something like "Max totally understands you!" and then I'll try to rope him into the conversation. It's hard. I appreciate it when people talk to Max, too.

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  19. Hi Ellen! As usual, you've hit the nail on the head. Our Georgia is now 10. And as one of two in the world with her condition, we have little to go on about her challenges and just make up the story as we go along. Good thing about that is no one can tell us we are wrong :)

    Our 'normal' child, Ethan, is 6. And earned an Autism Spectrum Diagnosis two years ago. So I have it in writing that both of my children are indeed SuperSpecial!

    When people tell me I'm amazing, I thank them kindly as my ego needs every bit of boosting I can get! And then I tell them it is not the hand of cards you are dealt in life. It is how you play them that matters. I try and live each and every day of our life by that. Most times it works. If not, I lock myself in the ensuite and eat chocolate. That has a 110% success rate of improving my mood :)

    Despite having two 'special' kids in tow, we aim to return to the USA in 2014 for more American travel adventures. We all survived, and loved our USA adventures in 2010 and 2012 so next year we will be 'due' our bi-annual trip.

    Michelle from Brisbane, Australia :)

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  20. The reality is, many people faced with raising handicapped children opt out. I am not one of these parents. I chose to keep my son home with me and do the best I can with him. When people offer supportive comments, I don't disect them, I recognize they are coming from a place of support, and I thank them. Why would you ever alienate someone offering support to you? I don't understand.

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  21. I completely agree with the above "Anonymous" comment. As a grandmother of a special needs child, I fear saying anything that will offend my son and daughter in law. Well meaning always, and I adore my granddaughter, I feel sometimes it's hell if you do and hell if you don't...and Ellen, unfortunately you have fed into this feeling. Not everyone on the planet has been blessed with the perfect thing to say as there are no perfect people.

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  22. Hi there, I hear where your coming from, and I guess you need to vent... However why can't a person take a compliment? It's positive re-enforcement for a job well done. Why is your reaction a 'standard' thanks I'm just a parent statement? I love my son too, and whenever I get a brave and kind stranger who comes up to me and tells me I'm doing a great job, I smile and genuinely say thank you. I do this because kindness and generosity makes our world a better place. I don't have a kid with special needs, and I don't get pissed when people compliment him or me. Why not look on the bright side instead of putting a negative twist on well meaning people who want to share their praise and kindness.

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  23. I will gladly accept kudos, but I hate the "God only gives special kids to special parents." Yeah, all the special parents in the news lately who have tried killing their special kids. God must think so highly of them!

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  24. You are special parents! Not just because you have a special needs child, but because you are doing it well. As a teachers aide, I have seen SOOOOOO many parents who are disengaged from their child's needs. They either refuse therapy or equipment because it takes too much money/time to learn how to use it. When we try to hook them up with programs to help, they don't need it. They can't be bothered to fill out the paperwork. Its too hard for them to follow through with the at-home therapy so they are ok with their kid backsliding physically/emotionally/mentally. Believe me, I'm right there with them as a caretaker, I know it takes all your emotional energy (as well as physical) to do it. But to do nothing is deplorable. So yes, you are amazing, awesome, excellent parents because you know how to give both your kids everything they need and still take care of you. (nobody blames you for the breaks now and then. we all need them, lol.)

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  25. My parents would have their take on this too, I'm sure! I have CP and my parents would always bristle when people would say that too. They always treated me like a normal kid and they were normal parents, there was really nothing special about it. We had unique circumstances, sure, but so does every family!

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  26. Thank you for this post. We are all special and we have our needs. And thank God loving your child dearly is a common and not a special thing.

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  27. Yes. Yes and more yes.

    I am a single mom who is raising my daughter to the best of my abilities. She suffered a terrible traumatic brain injury 30 days before her first birthday. She lost structural parts of her brain surgically and the rest was damaged due to the injury itself. She has left sided weakness (hemiplegia), cognitive, emotional and the rest of the delays.

    I get livid when people say "God gives you blah blah blah". Um. My child was shaken and slammed- so you're saying that was your god's plan? Oh how do I do it? I do it just like any other parent does- some days I am awesome, some days I am barely hanging on. Not any different than any other parent out there.

    So - please do not patronize or pity me. I could pity you but I don't.

    I love this and shared it on FB and it's gone viral a bit. LOL

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Thanks for sharing!