Thursday, May 15, 2014

The Myth of the Special Needs Supermom



While cruising through Facebook this week, I stumbled upon an article titled 15 Superpowers Special Needs Moms Have. I’ve seen memes and status updates all about my superhero standing but this article—written by a blogger I read often— got me exited to learn more about my powers, so I started reading. Among the strengths listed were patience, flexibility, extreme energy, and the uncanny ability to soothe my rowdy child.

“YES!!” I practically shrieked with delight, fist-pumping the air and snapping at Simeon to cool it on the whining or—so help me—I would use my newfound superpowers for evil.  “I KNEW IT!! I am a special needs mom and I have things none of the other moms have!” 

Honestly, I’ve always known I was better than everybody, but it felt so good to see it in print. Boy, did it ever. 





Because God knows that parents of typical children have it easy, am I right ladies? They’re reclined on their couches, sipping champagne out of crystal flutes, and sucking down baskets of bon bons, all while their compliant little broods pace the floor reciting Emily Post like scripture verse. They never have to exercise patience. Or flexibility. Or soothe their child when…

Hold on a second. Don’t all moms do this stuff? And, more importantly, don’t all moms not do this stuff sometimes?

Are special needs moms really that special? 

I received a message from a blog reader a few months ago. She was kind and thoughtful and wanted to let me know that reading our story inspired her to be a more patient and less materialistic mother.

Man oh man, was that awkward. Should I tell her the truth? That my husband is the patient one and that I am the yeller in our house? Should I tell her that I recently lost it with Simeon during a late night fuss-fest and I actually growled into the air like a caged beast and slammed the door on my way out of his room? Or that I sometimes (just maybe) use a word that starts with “f” and rhymes with “luck” when we’re running late? And, Lord have mercy, materialistic? Heck yes I am. Should I hope my reader never sees THIS post or THIS one?

Or should I just say it loud and clear: Enough is enough. We have got to stop the supermom nonsense. We have got to stop saying that special needs moms work more, love more, feel more than other mothers. It simply isn’t true.

Special needs moms? They’re just like you.

Here I am, the doting supermom, blissfully unaware of the chemical dyes and chalk dust my child is ingesting on the daily. I could take it out of his mouth but really, who has time for the ensuing tantrum? Besides, making his own snacks is a big step towards independence so just, whatever.

We are you, in fact—or who you would be “if.” If your child was faced with a tough situation. If you received scary news. If you feared your child wouldn’t be accepted.

Wait—these things happen to you, too? My point exactly.

For a long time, families like ours have fought for acceptance, not just for our kids but for us mothers, too. Yet somewhere along the line “we are equal” became “we are better.” We toil more, we mother more, we are superhuman. It’s a myth—and it sends a dangerous message. Dangerous because it tells the world that only a special kind of person can raise a son or daughter who is different. Dangerous because it increases our loneliness when we remove ourselves from the world of everyday motherhood—a world we still live in, even if it sometimes seems far away.


Seriously, please tell me who benefits from this stuff? FYI: Tonight I Googled "special needs parents are..." and you know what the next suggested keyword was? "Annoying." Umm...holy mortification, Batman! These memes aren't exactly helping the cause, ya'll...


We are just regular people raising the children we love. The flaws we had before we were parents are still the flaws we have today. Our special needs children have not perfected us by their very presence.

If we truly wish to join in—at playgroups, MOPs meetings, PTA gatherings, and every other mom group—if we want to be understood on a deep and honest level, then we as special needs moms would do well to acknowledge the universal nature of mothering. We have to look at our mom friends, the ones with the “typical” children, and stop telling them there is a divide between us. That they need to learn how to “get” us. That we are different.

The truth is that all mothers are allowed to be tired. All mothers are allowed to be frustrated. We are all just trying.

Sure, us special needs moms might grieve more. Oftentimes we are stretched thinner. Yes, we carry a unique pain that others do not. But do we love more? Do we have greater perseverance, patience, or fortitude? Not hardly. Certainly not everyday.

I’m not my son’s special needs mom. I’m just his plain old ordinary/flawed mom.

I’m hanging up my cape, y’all. It doesn’t suit me one bit.






57 comments:

  1. Amen!! There's these two opposing messages out there from special needs moms out there. (1) We're special needs moms and we have it so much worse and therefore have to be so much better than typical moms. And, (2) We're special needs moms and we want to be treated like every other mom. How the heck does that work? Every mom has a similar experience, a similar set of responsibilities, joys, fears, etc. Special needs moms have a few complications, sometimes a lot, but every mom (every person) has a unique journey with its own struggles. I'm all for empowering and pumping each other up, but.... let's be realistic and not cause more drama or separation peeps. :) GREAT post!!

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    1. Absolutely! We can't have it both ways. And I think we do this to our kids too. We say 1) Our kids should be treated as equal, even though they have disabilities AND 2) Our children are superheros who work harder than all the other kids. We've got to just be honest about the realness of this life. And honestly, it isn't fair to set our kids up for this. No one sees a grown man in a wheelchair at the library and thinks "what a hero!!" (at least they shouldn't!) so why set them on this path as kids?

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    2. Lovely post, my special boy brightens each day for me. I think when we allow people to think we are different in anyway, we are saying... Yes our child is different, treat him different. I don't ever want that for him.

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  2. PREACH IT. Honestly, we are just moms loving our children. Every child has different challenges. Every mom has different responsibilities and levels of involvement. We're all just doing the best we can with what we've got.

    I think some moms use their kids special needs as a trump card -- like no other mom is allowed to complain about their kids, ever, because our kids have special needs, so BAM, quit your complaining! Give me a break.

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  3. I shared your post on Facebook, my friends will love it. I was definitely guilty of perpetuating the Special Needs/Hero Mom thing for years, I think that it helped me to feel acknowledged? Maybe? It isn't that I don't have support offline, because I do (kind of) but yeah, those early early years were tough and no one really knew what we were going through and someone saying I had super powers made me stronger, oddly. Again....maybe? I don't know. All I know is that for the last year or more, with the craziness of the past behind us a bit, I've realized that we are all just doing our best. Special Needs or not. And I am certainly NOT a super hero. I don't slight the women at the start of this journey, posting those memes and cloying little poems and over-used quotes, for needing that though. We all need a few extra backpats at some point

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    1. Mindy-- I was guilty of this during my pregnancy when we were first diagnosed. I think part of it is because this "superhero" message was all over the place. I remember crying to my husband saying "But I can't be one of 'those' special needs moms! I'm not that determined and I'm kind of lazy-- why did this happen to me! I'm not like THEM!" I had read all about how "different" special needs moms were so, when it happened to me, I didn't feel capable, ya know?

      This is definitely a way we comfort ourselves. We all have those mechanisms that help us get through. I really believe that this supermom stuff is harmful in the long run. Not just to our kids but to ourselves AND to the disability community. It divides us when what we really want is connection. I love back pats too though :)

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  4. Standing up starting the slow clap. Bravo!

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  5. I have told you on your FB page that i LOVE you....and I still do. (in a non-totally-wierd-because-we've-never-met kind of love. You're amazing...your candidness, humor, and love for your kiddo make me excited to read every time you post. Hope you guys have a great weekend!

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  6. Before you totally hang up your cape, you should know: I purchased a camel colored wool cape/poncho and wore the heck out of it last fall and I really think it worked. (I enjoyed your post a lot.)

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    1. Ha! Good point... maybe I'll keep it around (if I can get a wool version-- maybe with an Aztec print?).

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  7. I LOVE this! We're already so isolated in our lingo and how we spend our time and I at least so desperately crave connecting with others. I also hate that any super mom image would make any other mom feel "less than." I can't be part of that. In there somewhere I feel like it's fair to acknowledge our challenges are quite different which I believe leads to some isolation but in no way makes us better people.

    Thanks for sharing this as always.
    Heather

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    1. Yes! And I think we should acknowledge that we do things differently-- but our focus should be on what is the same, ya know? Motherhood is hard whether you have a kid with special needs, or twins, or a kid who is defiant, or a kid who is a biter. I get tired of seeing FB posts about "I have a kid with special needs so stop complaining about how your kid climbs stuff (or talks back, or whatever). If people are only allowed to complain if their issue is WORSE then a birth defect then sheesh-- I won't be allowed to whine about laundry anymore. And that's no fun at all. :)

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  8. I could not agree more. A little story. M is 6, she is in Girl Scouts. We were going to have a cookie booth. I said, "Who can say no to a cute little Girl Scout in a wheelchair?". You should have seen the looks of absolute HORROR on the other moms faces. Then one of them said, "Did you really go there?" I laughed and said, "You gotta use what you got!". That broke the ice and took us down off the pedestal. She is just a little girl like the others. I am yelling, snuggling, use the TV and a babysitter at time, food bribing, flawed Mom - I am not special. It does make me wonder at times if those who get so emotional over this inspiration porn are the ones who do/would terminate pregnancies and that is why they are so emotional? Who know right? Great post - as always.

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  9. But I wanted the cape! Just kidding. Sort of. Not really. For me it's tempting to want to believe that the things I do for my kids and the emotions I have about parenting are a bigger deal because my kids have special needs... but when I step back I know it's just a manifestation of me wanting something to make it "fair" that other people's kids have a perfect set of chromosomes and neither of my kids do. But the fair/unfair thought is self-defeating and I just keep having to make myself let it go! Thanks for this post :)

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  10. Truer words never spoken. Pedestals make me super uncomfortable. I used to get mad when people assume all people with disabilities are nice people. That just isn't at all true. I feel like I see a guest post opportunity!!! AHemmm....

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  11. I love you right now. This is something that I struggle with all the time. My son has CP and tons of other medical issues but never once do I feel like a super mom. I feel like a tired mama who often goes on 2 - 4 hours of sleep and sometimes screaming PLEASE GO TO SLEEP. Though he can't help it. I have a "typical" son who is 5 and drives me wild and a 3 year old with a ton of medical issues and every day gets harder to get out of the house.I'm lucky if I get a shower on a day to day basis. But some of my friends tell me just doing that makes me great. Love their encouragement but man no extra special powers here.

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  13. I can't begin to summarize how meaningful and validating this post is for ME as a person with a disability. I am now the mom of a child who doesn't have a disability and it is SO on point. The fact that I use a wheelchair and juggle parenting a toddler doesn't make me a better mom. All I seek is for people to see me as an equal and understand that our family is 1000 times more ALIKE theirs than different. What parents who buy into the superpower nonsense don't realize is that it sends the message that one would have to be a superhero or somehow go above and beyond to counteract how horrible it must be to be a parent of someone like me.....I know..I know...this isn't what people intend. But this is a message it sends. Children receive it. I receive it and it creates distance between parents of people with disabilities and the community that their children will always be a part of. Ideally, the parents would also willingly embrace a role in the disability community at large as well. That's difficult to do though when you are constantly sending messages that you must be a super-nondisabled person to put up with one of us.

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    1. Yes Kara! I worry about this a lot! I would hate for Sim to overhear someone calling me a hero for caring for him (especially because he'll know right away what a crock that is since he's totally seen me NOT act heroic more than once!) and one of the things that gets to me most is that this hero language doesn't just come from outside the disability world-- many parents of kids with disabilities use this language (although I never really hear adults with disabilities use it, which I think is telling) and while they mean well of course, the implications aren't terribly positive.

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  14. Excellent post! It's amazing that you realize this and your first child is special needs. You are blessed to have such a patient husband. I think the two of you make a great team!

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  15. I have never commented on your blog (but I read every day!!!!) but this one made me stop and smile. The "Mommy" wars are all around us aren't they? Stay-at-home vs. Working, Special Needs vs. Not, Breastfeeding vs. Bottle...man it's exhausting just to keep up!

    Here I thought the real war was Mom's vs. Toddlers who will not stop stealing my phone to play angry birds.

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  16. Sing it, sister! Can't tell you how much I loved this!

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  17. I love you and your blog so much. I always want to just sit down and have coffee with you and never get up. This post really resonated with me. I have 10 year old son with cerebral palsy and a 14 year old daughter. Sometimes we joke and say "we have one really hard kid and also one with CP!" That teenage girl stuff has all the CP stuff beat. But seriously, are children are also adopted. Add being adoptive parents to the mix and people start treating us like we are literally walking on water. I have spent the better part of all these years feeling self-conscious and uncomfortable about all the "praise." The real problem with elevating us to some super-human level is that we have that much farther to fall when we act like everyone else, do the wrong thing, or make a parenting mistake. Being a special needs parent puts our parenting on display all the time and seems to give friends and even strangers an unspoken right to comment or offer "thoughts." I am thankful that 99% of the time the comments are positive and supportive, but they just feel phony!

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    1. I bet you do get a doubly high pedestal Sheri-Rose! And that's exactly the problem with pedestals-- when you act like a human (because you are one) you feel like a phony. Whenever I get complimented on my patience or attentiveness to Simeon I feel so embarrassed because I know that half the time I'm neither of those things!

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  18. I have been thinking about this a lot. Watching my kids get bigger and especially seeing how independent and self sufficient my typical 2 year old can be - she fends for herself in a way that my son never will... I do feel that I am called on to do a ton more for my son (has Mecp2 Duplication syndrome- nonverbal, cognitive/physical disabilities) than the mom of a typical 6.5 year old. The intensity of his minute to minute needs are that of a newborn. Every need has to be met by me. Plus I have to manage an entire staff for him and a medical profile. It is more intense than for my girls. And it doesn't end b/c he grows up. The only way that my intense caregiving will ever end for him is not something I want to think about.

    I also respect that typical parenting comes with stresses and they are very real. Carrying my screaming, slapping, kicking 2 year old out of public places is not easy. With my 3rd grader, school changes, friend challenges, disobedient behavior... They are very real and a big deal. I still come to the same conclusion though... My son's needs are far more overwhelming. By far.

    And I guess your point is that it doesn't make us super moms. And we can't ask to be treated like everyone else while proclaiming how much better or more super we are. That I agree. Any mom would do the same for her child. But the older my son gets and the bigger...and the harder it gets to meet his needs just b/c of his size...the more I realize the endurance that this marathon is going to require. Very different type of parenting than my girls for sure.

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    1. This...exactly. Liam's Mama, thank you for putting my scattered thoughts on the subject into perspective. :)

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    2. I am glad of this debate. I read the "supermom" post last week and felt a bit bewildered, being by no means more patient or organised than the next mum, despite my " special needs mom" status. I don't feel different. However, the challenges are SO much greater, which I didn't appreciate at all until I had a typically developing little brother. I think we all need to believe in that key mantra "This too will pass" when it comes to childcare, whether it's hourly wakes through the night, umpteen nappies to change a day, screaming, kicking tantrums in public places. And yet with my nearly 5 year old, it isn't passing. And the scary thing is, I don't know if it will. Will I be changing her nappies at 15 years old? I certainly hope not, but the future is uncertain for us in a way it isn't with our typical child.

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    3. I don't think anyone can deny that our kids have very unique needs and that those needs require us to deal with things that most parents will never experience. That is certainly true and I hope that this article doesn't appear to negate that fact. To me, the most important thing is that we recognize the truth of our own place as mothers-- we are all flawed, we are all just doing our best. I fear that far too many of us parents of kids with disabilities distance ourselves from parents of typical children by pushing this idea that we are superhuman and that our situations are so special that everyone else needs to learn how to "get" us. The problem is, if we distance ourselves from the world of typical parenting, if we keep focusing on our differences, creating a divide, and putting ourselves on a pedestal, then we are pushing away the very people that we want to treat us and our children as equals. We send a message that we are not equal. Even though we are not all the same, I think we have more in common with the parents of typical kids than we let on.

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  19. I am constantly trying to remind people - "No, with the diagnosis of my child I did *not* get a magic wand." Then I sometimes wonder, was that an oversight? I'd like one. Where is it? Ah well, we all do our best instead. :)

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    1. Ha! I would love a wand Mardra. If you get one, please pick one up for me too :)

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  20. Mary Evelyn - I'm honestly over the moon having read this. Every time people proclaim that being somehow involved with or having a disability is a form of being a superhero, it's hard to hear, because EVERYONE who is a parent faces tough times. Disability can absolutely make things more difficult, but there really is no divide. I loved this post and I can't wait to share it in my May round-up! :)

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  21. Love this. I am an ordinary person who happens to have a child with disabilities. The thing that makes me cringe the most is when people say, "I don't know how you do it, I couldn't!" So they would just get rid of their kid, no they would what they have to, to get by just like me.

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  22. Love this. I am an ordinary person who happens to have a child with disabilities. The thing that makes me cringe the most is when people say, "I don't know how you do it, I couldn't!" So they would just get rid of their kid, no they would what they have to, to get by just like me.

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  23. The only super I am is Super Tired! Loved this. And I do think there is some remarkable inner strength that has kept me from running away to join the circus, but I don't think it's different than any other mother's love for her child.

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  24. Super agree!
    Also, where did you get that bin that your son is playing in (the green one in the top pic)? Lizzy could love that :)

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    1. The seat is like an off-brand bumbo seat (this one: http://www.amazon.com/Summer-Infant-3-Stage-Superseat-Highchair/dp/B001NJC5QY/ref=sr_1_8?s=baby-products&ie=UTF8&qid=1400516891&sr=1-8&keywords=bumbo) and the table is a plastic tray that we found at our medical equipment store. It's meant for use in bed but it works great for him as a little table!

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  25. I love this.. it is so true on so many levels I have 4 children 3 boys whom are 13, 11, & 4 ( my dude who is special needs ) and a girl who is 10 months. That being said I am by far from a superhero I am just a mom trying to raise my kids the best way I can. I treat my 4 yr old the exact same way I do my older two. He still gets time out and told no I still take his toys when he throws a temper tantrum. I to am guilty of sometimes just letting him have his way to avoid a total fit. I hate it when people look at him like he has some kind of disease when in all honesty there just the same as him. He recently told a little boy that his legs may not work but his wheels work for him. I loved it. Life is a struggle with him but it was a struggle since I had my first baby. My sister once told me she doesn't know how I can raise a special needs child because she doesn't think she could ever do it. What she doesn't realize is that if she was given a special needs child she would do just fine.

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  26. Why don't I remember to read your blog more often?? Every time Kimmie links to it, I remember, "Oh, yeah! She's super awesome, and I wish we were best friends!" But apparently I'm even flakey at being a one-sided-friendship-internet-stalker... I'll be better. :)

    Anyway, LOVE this post. I'm not sure people realize just how dangerous the mindset is that it "takes a special person" to raise a child with disabilities. That mindset is causing the skyrocketing abortion rates of disabled children. It leads to policies, practices, and attitudes, that have high-stakes impact on the lives of the disabled.

    And like I think was discussed somewhere up in the comments, the kids hear this message! My entire life, I've listened to people--often complete strangers--tell my parents what superheroes they are. Of course it's well-intentioned and may seem harmless, but it's an uncomfortable/damaging message to grow up with. The entire world seems to agree that only a super-human could put up with me. That unlike other kids who'd eventually grow up and become independent, I'd forever be a helpless burden on my parents. I haven't even lived in the same state as my parents since I left for college 12 years ago, but the message is still in my face all the time!

    Thank you for writing this. The parents of non-disabled kids aren't going to put this message out there--mostly because it hasn't occurred to them, and partly because they'd be terribly judged for it. Those of us with disabilities can't be too loud about it, because then we sound ungrateful to our parents. It has to come from you! :)

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    1. Thank you! That means a whole whole lot Kristine! And you're right. If we want this language and this mindset to stop then it needs to start with us. We can't expect other people to stop talking about us this way if WE continue perpetuating this idea.

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  27. Yes and yes. I find this especially harmful because of the "special kids go to special people." Really? Actually special needs kids are abandoned, abused and neglected ALL the time. And the idea that you couldn't do what I do? Yes you could. Stop it. You should also check out this Ted talk I recently came across (and just posted about today) it's about "inspiration porn" and objectifying the disabled. It's really good.
    https://www.youtube.com/watch?v=SxrS7-I_sMQ

    So glad I found you via Design Mom. You're cool.

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    1. I think about that all the time Miggy! And I've heard people say that it takes special people because some choose to abandon but really, if you abandon your baby with special needs, my guess is that you have a whole host of other issues and probably wouldn't be a great parent to a typical child either. You never hear stories about someone who is a "fantastic mother" (except for that one time she left her child with a disability in a dumpster).

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  28. ps--we're moving to Cincinnati in a month. Cool beans.

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  29. Thank you for this!! It sometimes seems that moms are forced into this competition with each other - we feel we have to be so good at everything. It's not a competition, we are all trying very, very hard to do our very, very best. We all have our challenges to parent our children, regardless of they are.

    I remember a saying I learned when my son is born - having a child is like having your heart walk around outside your body. As moms, we can all relate to this - whether we have average "normal" kids, special needs kids, goofy kids, accident-prone kids, kids with limited social skills, or anything else you can imagine. My son is off-the-charts in cognitive development, but his social skills are so far behind that he has a tough time making friends. My heart breaks when he comes home from school in tears because he has been rejected again by his classmates on the playground, or because someone made fun of him and he doesn't understand why. And, another mom would understand my heartbreak (regardless of what kind of kid they had).

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  30. As a mom of a 'typical' kid and one with disabilities, i agree with Edna...
    http://i.imgur.com/QddufHc.gif

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  31. I've been changing diapers for 16 years. Special needs kids are hard, but I'd rather change a diaper on a teenager than deal with my 14 year-old's moodiness. That's harder. True story.

    People often say to me, "I don't know how you do it!" And I say, "the same way you would." They will say, "I couldn't do it." And I say, "yes you could, because you would have to." It doesn't make me better. You just do what you have to do.

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  32. Oh c'mon - you know God picked us out - made sure we were happy, not too patient, just enough selfishness - and we're to be envied because we will never take a spoken word or a step for granted - and we will rise above ignorance, cruelty and prejudice!!!! We don't even need a patron saint - all we have to do is look in the mirror!!! Erma said so, so it must be true. .... Just the term "special needs mom" sends me off looking for tylenol. ...

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  33. I stumbled across your blog - and this post - and felt compelled to comment. I'm a mother to twins, and I get the whole supermom comment all the time. I can totally relate to how you feel, and it was so refreshing to hear your views why this is in fact a myth. Our experiences as mothers are so much more universal than one may think. Having being labeled a supermom is actually making a really unnecessary divide between mothers. I loved this post! Thanks for writing it. Oh, and your son could not be any more adorable!!!

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  34. "Our special needs children have not perfected us by their very presence." very true because I am not perfect.

    But I would say that both of my children are perfecting me, when I allow the experience of mothering them to teach and change me. I have two boys, one with severe and complex disabilities and one without. I am the same woman, the same mother to them both but my experience of being a mum to them is completely different. And I mean COMPLETELY different.

    At times it feels like different worlds sitting side by side because nothing is the same. I am not a special mum though, I'm just coping. But in practical terms I find it easier looking after my youngest son and three of his friends as they run and play, eating food and talking than my eldest son who needs me to scratch his nose if it is itchy.

    I guess we need to differentiate between different and special. It may be different but that doesn't make me special. You're right we can't have the equal and special status to be interchanged whenever it suits us.

    Thanks for you posts, beautifully written and presented... I love them.

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    1. Thank you! I find it so interesting how differently we each experience this stuff. I know some mothers (who commented above) say that their typical child is far more difficult than their child with a disability. We each have such different backgrounds and our KIDS are so very different too. I think different is great. "Special" and "super" are what I take issue with. If we crave equality then we have to admit we have more in common than we don't.

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  35. Wish I could hit a 'like' button.

    I guess we aren't so good at recognising and celebrating differences without being defensive or magnifying our own issues.

    So should we be having a discussion about how helpful the term 'special needs' is?.......

    Thanks again.

    I shared your post re my child is defined by his disability. It went down really well and others shared and commented.

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    1. Thank you! That post still scares me in so many ways. I stand by it, but sheesh-- so many feelings wrapped up in that one.

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