Tuesday, November 9, 2010

Moms of kids with special needs: myths and realities

It's hard to remember what I thought of moms of kids with special needs before Max came along. I have vague recollections of seeing moms at the mall or in the park with their handicapped kids, and feeling really sorry for them. I thought that having a kid with disabilities must be a living hell.

I've had this on the brain because this weekend, I got a chance to see how someone else views me/this blog. Babble, to be exact. The writeup for Love That Max in the list of Top 50 Mom Blogs mentions "compassion" and "advocacy" and "acceptance."

I'm proud to be included in this list—in some ways this blog is like my third child, except I don't have to take it to the doctor for check-ups or argue with it about wearing clothes pulled from the laundry. But the description left out one thing: This blog has a sense of humor.

Sometimes I make light of special needs (even out loud, as do a lot of you). Sometimes I joke about the insane stuff we deal with (The Special Needs Parents To-Do List). Occasionally, I poke fun at my husband (Clueless Husbands, The Interview).

Could it be that people aren't comfortable with a special needs blog that's funny at times? Is it something you shouldn't commend a special-needs mom for because, wow, wouldn't that be warped? Could a blog about raising kids with special needs that was an LOL read all the time (which this blog most definitely isn't) ever win Funniest Mom Blog?

Sometimes, I think the world sees moms of kids with special needs in a certain way. I can only speak from experience (duh!), but here goes:

Myth: No matter how OK a special needs mom might seem, there is always an underlying current of sadness in our lives.
Reality: I was sad a lot when Max was very young; I struggled with acceptance and fears about his future. I still get pangs of grief, but they are rare; they have everything to do with my own limitations and nothing to do with the reality of Max. Mostly, I'm a happy mom, and a slightly grouchy wife.

Myth: Moms of kids with special needs must be EXCEPTIONALLY SAINTLY PEOPLE because, you know, we are raising kids with special needs.
Reality: Obviously, there are parents out there who don't treat their kids well, special needs or not. But most moms of kids with disabilities, the ones I know, do what they can for their children. We're not being nice; it's part of the job. Sometimes, we completely and utterly run out of patience. Sometimes, we—GASP!—yell at our kids with special needs. I once wrote that we have to be more selfless than other moms because our kids need us more, which peeved some people, but I do think that's true.

Myth: Moms of kids with special needs are deprived of joys other parents have.
Reality: I have moments of bliss with Max just like I do with Sabrina—and just like any parent has with their kids. I relish what Max can do; I've grown out of mourning what he can't do.

Myth: Moms of kids with special needs have really hard lives.
Reality: I don't think special needs moms have a harder life, words that invoke pictures of Siberian labor camps—just a more involved one. Some of us have medically fragile kids. Most of us spend a fair amount of time teaching and helping our kids to do things other kids automatically do. Simple things get not-simple. Like, as I was writing this, I heard Max wailing and I ran upstairs and his body was halfway off the bed; he didn't have the strength to right himself. Then again, we met parents this weekend whose kid is sleeping on their hallway floor in a gorilla mask. Then again, out of my two kids, Sabrina is the so-called "harder" one. Kids: What variety is truly "easy?"

Myth: Moms of kids with special needs are exceptionally good-looking and charming.
Reality: This one's totally true.

So, what myths did I miss?

35 comments:

  1. Congrats on making the Babble list! That's so awesome!

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  2. Before I had my son, I was guilty of believing the myth that moms of special needs kids must have really hard lives. Now I realize that our lives are just different. My son doesn't have a lot of mommy and me music classes but i take him to therapy...probably not any more time spent than the other kids spend with their preschools or classes. And I bet most parents spend time teaching their children to talk or sign; I'm just doing that later than M's peers' parents did.

    And the joy? Man. My kid said TV last night!!!!! He pointed to the TV and said TV. I don't care what other parents get excited about; we called my mom and my siblings. I don't think I could have imagined the joy I get from my son!

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  3. Tanis Miller is ROFLMAO funny and she made the list as well. check out her post on 13in of joy

    http://www.theredneckmommy.com/2010/10/08/the-best-part-of-parenting/

    I don't remember what her babble bio says tho

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  4. yes, our lives are just different. and incredibly rewarding. and the joy and happiness that I get from both of my boys (T-man and JD) is immeasurable.
    yes, like you said, i do feel sad sometimes, but that goes away so fast now. that will probably never go away completely.
    Kristen

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  5. Maya, that's great!!!! Cheryl, yes, Tanis is very funny. But her blog isn't exclusively about kids with special needs, nor is it just a humor blog, which was the point of what I said. Like me, she was nominated in the Most Confessional category. I am glad to hear there is a blog out there you enjoy. And Cheryl D, thanks for your well wishes.

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  6. Don't forget that we are physically fit, eat only organic food, natural beautys and always keep our shoulders back.

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  7. I really enjoyed this post. Thank you!

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  8. I think a Myth list is tricky, because like any other list its all subject to generalizations and exceptions. But I do think its a very interesting topic to explore.

    But knowing me, I'd want to write a very, very long, OVERLY long thing about it that essentially goes nowhere.

    Food for thought though.

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  9. ellen, honey, you're on my blog roll

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  10. So glad for the reminder that I am exceptionally good looking and charming... I needed that today :o) Thanks :o)))))

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  11. I think the biggest thing isn't even a special needs mom myth - it's a human being myth. This idea that anyone's life is that much easier or harder than your own. Some people look at my life with pity; others think I have a life that is SO MUCH easier than theirs. At the end of the day, we ALL have things about our lives that suck, things about our lives that sometimes suck, and things about our lives that are great. For any one of us, it's just a matter of deciding which aspects to dwell on. :)

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  12. One you forgot is that in reality us single mom's w/ kids w/ special (and typical) needs are a great catch if you just take the time to look.

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  13. Loved what you wrote today. My life feels very "normal". Sometimes when I see people take a second look at my son or daughter with special needs for a second I wonder why they are looking at them. In my day to day life I truly forget they have their disabilities and they seem, in my eyes, just as my three typical children (happy, sad, so beautiful, having stregthens, having weaknesses, making me smile and testing my patience)!

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  14. I do not have a special needs child, I read your blog because you are funny and see you as simply a Mom with different skills. I think you give good advice and see similarities in how we deal with our children; special needs or not. My son had a purple phase (we are now in red) but could completely relate to all your purple posts, he still sleeps with his purple bear.
    I think the reality is that we are all different and can learn from each other good, bad, and messy. The laughs are all bonus. We all need to laugh at ourselves now and then.

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  15. I applaud your humor, I think it's great! I am not a parent, but I have been working with individuals with special needs for the past 15 years in all different settings. I recently started my own business providing special education consulting and training to parents and educators as well as 1:1 tutoring. When I read your blog and also "Curious George" I thought your writing was quite clever. I think maybe some people oppose your writing because they don't understand disabilities and they still feel the need to express pity. I always try to stress raising the bar and understanding the disability as well as the abilities. The fact that you can show humor helps keep a positive attitude. Keep up the great blogs and I will be sure to share your work with my clients.

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  16. Cheers! Congrats to you for making Top 50 on the Babble list. You truly deserve that spot. Quite honestly, checking your blog out most mornings is one of the highlights in my day. Thanks to ya!

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  17. Myth: We have the cutest kids.
    Reality: Oh wait, that's true! Our kids ARE the cutest!

    Hehehe :) The reality is, I am biased just like any mom: my son is the best!

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  18. I like the last myth the best!
    Myth--BUSTED!

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  19. This particular myth-set isn't humorous at all, but ya hear questions along these lines every so often--at least I have:

    What DID YOU DO to CAUSE this? Did you drink, smoke, (or hang around those that did), not get prenatal care, do drugs, sniff paint thinner, eat bad crap like the evil soft cheeses or sushi, work at a job involving heavy lifting for too long...?

    It doesn't matter if you had the OB/GYN of The Year overseeing your pregnancy from conception to birth, some asswipe will eventually come along and ask a question along those lines! It usually starts out with "Don't think I'm BLAMING you, BUT...."

    Of course, owing to my years on this earth, I often get the "Well, you were really a little OLD to be having that baby, now, weren't you?" No s*it, Sherlock!!! It was a shock to ME, too!

    Oh well, can't let the bozos get you down! The only thing worse is being asked (and it has happened) if I'm the grandma!

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  20. Man, I love to read your blog. You always say what I feel.

    We didn't ASK to be moms of kids with needs. But we handle it. And we experience joy, fear, sadness, happiness..everything any other mom feels about their kids, special needs or not. My life is not hard. It just looks that way.

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  21. I think it's all perspective and timing...and a huge degree of what special needs / combo of needs your child is challenged with. My son has needs makes it particularly difficult to know what kind of kid your getting one day to the next; what kind of language he can maintain, understand, articulate...thus making his behaviors varied from somewhat manageable to thrashing and raging. Some medications work to calm his seizures for a few months, then stop and we're on to others which makes for *&^^ during a medication change.

    So, my perspective, in terms of underlying sadness, and really all of it, may be very different than that of another's.

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  22. Hey girl! So great about Babble! And I totally get what you said about your blog. It's the same for me: "in some ways this blog is like my third child, except I don't have to take it to the doctor for check-ups or argue with it about wearing clothes pulled from the laundry."

    :)

    I'm writing for 5 Min for Special Needs now too - see you over there!

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  23. COngrats on the top 50 list...I think you're funny. Also, congrats on not running the marathon. I also did not run it, I'm surprised I didn't see you not running it!

    I just realised I'm totally commenting on the wrong blog ...but oh well. I'm in my comment on the wrong blog phase. Good on Sabrina for her Tom Boy phase. I'm currently in my travel adventure phase. It started in my teens. I think my parents are waiting for me to grow out of it, and into my princess phase but I don't know if it's going to happen.

    I look forward to hounding you for your autograph next time I see you!

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  24. If you listen to podcasts, I'd like to direct you to "Ouch! Disability Talk Show" by the BBC. I think of it as comedy first and special needs second. As an example of their humor, they have a segment called "Vegetable, vegetable, or vegetable?" It's a modification of the game "Animal, vegetable, or mineral?" In this version, some with a disability calls in and the hosts ask questions to guess what kind of disability the caller has (i.e., what kind of vegetable they are).

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  25. Oooh, Courtney, that sounds fab.

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  26. We spoil our special needs kids and ignore the typical siblings. At least that's what my family and in-laws think.

    Congrats on the Babble List!

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  27. This is a great list. I like the last one in particular!!

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  28. I haven't quite gotten over the sadness and gotten to the acceptance phase but you and all the other positive moms who respond on here give me hope that it will happen. I do definitely think at some point or other our lives are harder at least it appears that way to me. I know we deal with different emotions so at least that at some point gives us more to deal with than other moms. You rock and so does your blog, I am so grateful for you and your blog!

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  29. Yes! That last one is totally true. :)

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  30. Congrats on the top 50 - and I do think someday you could win Funniest!! I love your sense of humour - it is definitely one of the reasons I love your blog!
    This post has had me doing a lot of thinking this week though. When I read the myths, unfortunately I still feel stuck in them myself (other than the saintly part! :) ). Elizabeth and Gina's comments are along the lines I'm feeling. I'm in the early, sad, years not having a clue what's going to happen day to day and certainly no idea of what the future holds. However, this post really does give me hope that in the future I may feel that way too - so thank you!!
    :) Rose

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  31. Just when i start weeping, reading you posts, You get me laughing out loud. We are good looking, aren't we?

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  32. Sorry for the typos, iPad is good for max but bad for me :)

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  33. Finally catching up on some blog reading...I'd missed this post. I love it. And you know what? Although I don't have a child with "special needs" with in the traditional sense of the word, we adopted our son and I can completely related to your myths, truths... when I am with him, I soemtimes catch people glancing at me in a certain way... like they think I have a sad story because I chose to adopt (my story was sad for a while, but it's not anymore) or that I am missing out on something because I am adoptive mom (the love really is no different and really, all I ever wanted was to be a mom) or that it must be so much harder (there are differences in adoptive parenting, yes, but they only serve to make me a *better* parent and I am grateful for that).

    Anyway. Great post. :)

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  34. ok, so usually I disagree with you about it not being harder to raise a child with special needs. But I liked how you put that it was more involved. That kind of got me thinking. My younger son is typical, and I actually do think he can be harder. Sometimes I wonder if that's because I had a child with special needs first? As a baby LJ was fussy in public places but other then that he was a very good baby. My second seems to need more coddling.
    I wouldn't say it's like that for others parents with kids with SN though. I do think that it can be really hard with all the medical research we have to do and decisions we have to make (ie surgery or no?) but I know other parents have to make tougher calls, are in the hospital more, etc.

    I guess it depends on who you're talking to.

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  35. There's no doubt about it, I ABSOLUTELY felt sorry for parents of special needs. I'm also ashamed to admit I once even asked myself how they could go on loving their children. I believe it's good to have a sense of humor with this, because God definitely has one. Now that I'm a SNM, I see how laughter keeps us going in hard times. How could I have questioned the love? My SNC loves me more than my other kids at times! And I have learned so much in my battle to help him do better. Keep on laughing mama, all of us who r with you, completely understand it.

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Thanks for sharing!



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