Thursday, July 29, 2010

Misconceptions people have about parents of kids with special needs



There are lots of misconceptions out there about kids with special needs. Over the years, I've heard everything from "Does he like to be around other kids?" to "How can he have cerebral palsy and walk?"

I think people have misconceptions about parents of kids with special needs, too.

Sometimes, I get the distinct feeling that....

...people think I must be a super-nice person because I am raising a kid with special needs. OK, those of you who come here regularly may have gleaned that I am not evil, but there are far nicer people in the world than me. Maybe billions of them. Once, I even killed a goldfish. Also? I didn't have a choice in the matter: I got a kid with special needs. Of course I'm raising him and doing my best to help him along. That doesn't make me super-saintly. That makes me a mom.

...people mistake me for Penelope Cruz.

...people think I have endless amounts of patience. Actually, I work hard at that. I've always liked things done quickly. You can imagine how nuts I drove my parents growing up ("ARE WE THERE YET? ARE WE? WHEN WILL WE BE THERE? HOW LONG IS TWO HOURS? ARE WE THERE YET? ARE WE?") And then I had Max, a kid who is going through life at his own pace. That took a whole lot of getting used to. Still working on the patience thing. Are we there yet?

...people think my life is filled with sadness. Although it was a lot more so in the first couple of years after Max was born, and I still have flashes of grief, I never sit around feeling sorry for him—or for myself, either. Except when my pants won't quite close.

...people think they need to be extra-careful about what they say around me. Especially moms of typical kids, who might not think we have much in common. I may have to deal with things they don't (therapy, neurologist, medications, blah, blah) but there's plenty of regular-parent stuff I juggle—a kid who'd like to eat chocolate ice-cream 24/7, a kid who always wants to play on the computer, a kid who fights with his sister. Word: Feel free to joke with me about Max's purple obsession and car washes, just like you'd joke with another parent about their kids' quirks. Because it's funny, not sad. It's OK to treat me like I have a "typical" kid. In many ways, I do.

Do you ever feel people have misconceptions about you as the parent of a kid with special needs? How so? If you don't have a kid with special needs, have you ever made assumptions like these about other parents?

29 comments:

  1. I don't assume that parents of kids with special needs are saintly or anything, but I do assume that you folks have endured more heartache and fear and sleepless nights than I have, and that does tend to build patience, and (yeah) saintliness. :-) Don't worry, though, I haven't painted a halo on you just yet. :-)

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  2. I have a friend with a little boy with epilepsy. It's been a journey for her whole family, and I think yes we all fail a bit to really understand what they are going through. i've had a lot of conversations w her tho and I believe it's helped me to just see them as a 'family'. Not a family with a kid with special needs. I was brave tho I helped her a lot in the early days, babysitting him when others wouldn't.. figured I can call 911 just like she can?? :)

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  3. I know how you feel but I am on the other end of the stick. I get tired of people seeing my son (he has Aspergers Syndrome) as a naughty & loud teenager just because they cannot see his disability doesn't mean its not there.

    I'm with Max & the purple obsession! I love that colour!

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    1. Me too! I have Asperger's Syndrome and when I am radically honest, people take it as an insult! Then, when I explain radical honesty, they are fine.

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  4. First of all, I would like to excuse my English….I’m French Canadian… I think it’s harder to raise a child with special needs. One of my twins add 2 heart surgery, he only have one kidney, and a small aorta. He’s particle out of danger now but he’ll have to be follow all is life. But I understand how you’re feeling…Everybody (friends, family, coworkers, strangers….) are telling me (and my husband) how it must be hard to raise twins (they are boys, 3 years old…with a 19 years old daughter…) and that we are so good at it. My response is often like; what would you want us to do??? Put them in the recyclable bin and pray for somebody to take them and raise them??? Anyways, I hope you understand my point and I’m learning true your blog how to react when I see people (adult or kid) whit specials needs. After all, I’ve been raise by a mother with specials needs!!!! See I even forget about that!!!! She’s add multiple scleroses and add 6 kids (I’m the youngest) in 7 ½ years and raise them along!!!! SHE WAS A SUPER WOMEN!!!!

    Sophie

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  5. Another compelling post. I love how you say that you don't have more patience than others, but that you're working on it. I think we often assume that special needs kids are given to parents that have an abundance of patience and energy... the ones that can handle it better. Not so true, huh?
    Carissa, love how you said "figured I can call 911 just like she can". Kudos to you for stepping in to help!

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  6. i just found your blog and i love it! I have an almost 3 yr old daughter with cp. I love your blog because you say what I am feeling but don't feel like i can articulate it the right way so i just go on leaving it out on my blog...but when I read your posts, i just want to copy and paste them to my blog and say "hey check this out, THIS is how I feel too" so nice to know were not alone.

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  7. I know I am perceived as a cross between eccentric and pathetic by a good many people. I know a lot of people avoid me because of my kids (their loss). I do get the "walk on eggshells" conversations at times (I sometimes will ask them to cut the crap and say I am not easily offended--the only dumb question is the one you don't ask).

    I do get what some of the others are saying about how people perceive us. I get the "Look at that bratty loud whiner--he's too old to be acting like a baby" look; along with the "WTF must be wrong with HER--she's got TWO f-d up kids!!" look (aka the double-sneer and recoil!). I don't waste my time explaining that they are biological cousins and the oldest has none of my DNA, because that is just not important. It ain't about ME--I would probably only be getting the "Gee, what a big ass she has, she should cover some of that gray" look if I were all alone.

    But, as I have said on other occasions, I do take the time, if I can, to create a teachable moment. Sometimes I have to grit my teeth because the people with the attitude are pissing me off, but after I'm done, I feel UNBURDENED. I've thrown my situation at them, for THEM to deal with and digest. I find that refusing to get combative or confrontative, and instead being open and assuming the best (even when that's not the signal I am getting) works most of the time. I don't get huffy or defensive (takes too much energy), instead I consider it a personal victory when I change attitudes of others. It's also good "personal therapy" I think. Very liberating. See, it ain't MY problem how OTHERS perceive me and mine! It's THEIRS.

    And no, I'm not a super-nice person, though I am halfway patient (waiting table does that to you). I do have a super-nice mother, though, and a super-nice daddy, and they back me up, give me respite and all of us a ton of support and love, and big picture--I'm pretty lucky.

    What is a "typical" kid anyway? The Brady Bunch? (Buncha dorks if you ask me). Or the offspring of those Joneses everyone is trying to keep up with? I think all kids are unique, just some are a bit MORE unique than others! Screw those Joneses--let them charge ahead at a too-fast pace ad get to the finish line first. I don't want to keep up with them, I'd rather stop and smell the (purple and other colored) flowers!

    PS--You're way better looking than Penelope Cruz--don't sell yourself short!

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  8. I can relate to your posts so well! I feel that there are many people who prob have the same misconceptions about me as a parent. I often get the, "You are so patient, you must be a saint." or "I give you credit. I could never do what you do". WRONG!!!!! Patience is something that my son has been teaching me about since his birth. And I am definitely NOT a saint.....my husband will vouch for that. :) As for the "I could never do what you do" comments.......My son was born with special needs & I love him more than anyone or anything. Soooo what am I supposed to do? Should I tell my son I "just can't take you to , yet ANOTHER doctor's appt today." Or I just can't help you with your therapeutic exercises " because I "didn't sign up" for this part of parenting"??????? No, I do what anyone would do, & I try my best to help my son thrive & succeed. That doesn't make me special & it doesn't make me a saint.....it makes me a mom.

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  9. I understand what Felicia is saying, and like Blossy, I have a teen boy with Aspergers...mine also has a mood disorder that causes him to assault people with just seconds notice. There is nothing like having to do a "take down" in a pumpkin patch with 30 people watching ( and gawking) to make you feel like the police are going to show up at any second.

    I also have a (now) almost 5 year old who only said a few words at 2 years old. He has/had verbal apraxia. I just wanted to melt into a wall when he was younger and someone would expect him to say "hi" or answer when they asked "what's your name?"...I just knew they thought I just didn't teach him any manners.

    The same child broke his thigh at 19 months old while jumping on the trampoline. He is a sensory seeker, and I was sitting 2 ft or less away from him ON the trampoline. He spent 5 weeks in a body cast. I thought I was going to have go postal on some jackass at walmart one day. He passed by us in an isle,then went an isle or two over and made some (loud) and snarky comment to his wife about what a "great mom" I must be since my toddler was in a cast.

    I think what people don't understand is that when you have a child with special needs, you are strong because you HAVE to be. When I had to learn cast care and check for pressure sores and all that, it seemed very surreal. Now that it has been 3 years, I look back and think about how hard I thought it was at the time. When my husband first had seizures, I freaked...now I throw a couple Ativan in his mouth and send him to bed. When my older son assaults an adult, I take photos of the injuries in case CPS ever gets involved ( they have once, and the case was closed pretty quickly).

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  10. I've had all these reactions as a parent of two kids with special needs. I used to have very little patience - I don't like yoga cos it's too slow, so having to hoist my daughter into her wheelchair drives me nuts!

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  11. It seems like parents with "normal" kids feel guilty venting about their nornal-kid problems around me. I wish they wouldn't feel that way! I'm a mom, too. My challenges as a parent may be different, but that doesn't mean that I think someone else's challenges aren't valid.

    It can be very lonely being the mom of a special needs kid.

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  12. I had to take off my halo to read this one...

    It's a tough balance because I'd like an extra dose of compassion, understanding, and acceptance; but I also want to be treated just like everyone else. I do see people walk on eggshells around me. I guess it's a process of understand... for all of us.

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  13. Loved this! I have a daughter w/ autism so I kind of get both sides of the coin. All the - "but she seems SO normal" and the "you're a super mom for handling a kid w/ asd". I find it so annoying because I'm not a supermom, I'm stressed out and overwhelmed. I lose my patience and yell at my kids and I hate that I do that. And I didn't have a choice, it's not like I adopted 10 kids w/ special needs or something - now that would make me a saint!

    I agree with Dani G though. I think because my girl seems so "normal" to others that people assume it's all just a walk in the park. I kind of hate when my friends complain about "normal" developmental stuff that I don't get to experience like the "why" stage, etc. But on the other hand, when I say she has ASD people some times react like I said "cancer".

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  14. Julia, I know, it can be lonely--but when I read all these comments, it feels that much less so.

    Cindy, so glad to hear you do not consider me the least but saintlike. Phew. But Carissa? She sounds saintly. And Sophie's mom, too!

    Steph, DawnV, others: thanks for the nice words. I love writing this blog.

    Felicia, I love how you are all about teachable moments. I need to better embrace those. And thank you for saying I look like Penelope Cruz. Now you can be my book AND movie agent.

    Dani, it really is a fine line. And Carrie, when I say Max has cp people also sometimes react like he is on his deathbed or something.

    And Sarah? Yes, we are strong because we HAVE to be--and because how can you not be so for our beautiful kids?

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  15. I wrote an entire post on this topic. (http://www.thecrackandthelight.com/2009/12/when-ecfe-breaks-my-heart-part-2.html) if you are interested. I have no special superpowers. I am human. And I think any parent will rise to the occassion as best they can given what they have to contend with. I fail him everyday. But I keep trying, as any parent would...

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  16. Oh yes, I've heard the "you're so patient with her" & "how do you do it". One, patience makes everything go more smoothly & keeps both of us from getting frustrated. Two, like you said, dealing with it isn't optional. It is interesting sometimes because people are often surprised to learn she is special needs because she is very high functioning, so then you get the flips side "why does she ACT like that". Also. Frustrating. Great post, thanks for a view into your world.

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  17. I think I get the "saintly" thing even more than most because we adopted our child with special needs. People think my husband and I are angels or something - and they are quick to say so (and often in front of my children). We adopted Sunshine because we wanted to be her parents. I wish more people could understand that it really is just as simple as that.

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  18. Ellen--you are CRACKING me up with that Penelope Cruz business.

    In case anyone is wondering, I've met Ellen and she a complete New Yorker, very funny, and I never once saw a halo.

    It's funny, I taught special needs kids and I have one of my own and still no one thinks I'm patient.

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  19. Hi Ellen!! I love your blog!! I don't have a kids with special needs, but I have three kids. People assume I have TONS of patience since I have three kids that are one year apart. I am not patient by nature, but motherhood does funny things to people, often times changing us for the better. The only thing that drives me nuts is when I get the feeling that parents of special needs kids believe that because my kids are "typical" I don't have the right to feel frusterated, or complain about anything my kids do. I wish we could all just support each other just because we are all mothers.

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  20. "people think they need to be extra-careful about what they say around me"

    Ditto Dani G's comment. ;)

    And yet I have read many, many post-rants from parents about how someone said the wrong thing about their child - name-calling and everything - but then what are blogs for?


    Re: DawnV's on patience, hoping parents will reserve some of that learned patience for other who do not understand. Meeting that person is the opportunity to help them understand - that and posts like this.

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  21. I am not "saintly" and I'm sure not the "supermom" everyone makes me out to be. In fact...what else would I do? My son gets the best that I can give, as do my other sons...based on their needs. Some need more of me, some need less. While I too have moments of sadness, the small beautiful victories that we celebrate makes us the lucky ones...www.tjzmommy.blogspot.com

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  22. as someone woth c.p i have dealt with peoples misconceptions all my life and hense the reason for my blog which is talking about my life suffering C.P

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  23. Oh I hear you! I think that sometimes people label us because they don't realize that we think WE'RE the "normal" ones.

    Just kidding. Sort of. ;-)

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  24. My favorite one that I get is, "You must be the best dad." When they see me holding Amanda's hand as we walk anywhere. I do it so she doesn't fall down. She has balance issues and 0 depth perception. So I think the bar is set rather low at times when people consider the fact that I don't let my child take a face plant in the Home Depot parking lot as dad of the year material.

    Patience is a tough one with me. I'm learning every day, plus I think she is speeding up so we should meet in the middle somewhere.

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  25. Everyone always says oh, you're so strong, but sometimes I don't feel that way.

    I'm glad to see other moms of children with special needs aren't that patient... because I know I'm not! It's getting better and I don't take my frustrations out on the kids, but that doesn't mean I'm patient, lol. Although I AM much more patient then I was before having kids. which isn't saying much ;)

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  26. A lot of people get the idea that being a mother to my son is a lot harder than being a parent to a typical kid. And I think for a long time I perpetuated that idea and felt sorry for myself too. But I too am starting to get sick of people saying I'm such a great mom because I can deal with all this. You deal with what you have to. He's my first child so I don't really have anything to compare it too. It's tough being a new mom. It just is, special needs or not. The fact that I deal with it doesn't make me any better than any other mom out there.

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  27. A lot of people think I'm that super gifted person that can do 99999999999999999999999x99999999999999999 in their head. Not so! I can't do any math in my head. However, I am very insightful and know a lot about animals. Anyone here feel guilty if they ate a quail? I know I would.

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  28. Anna, what has that got to do with this?? If you cant be relevant, dont comment. And secondly since I'm a BIG believer of Free Speech, I usually keep quiet. Maybe even smile if it's funny. My girl is also highly functioning despite her disability.

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Thanks for sharing!



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