Special Needs

Vent: I don't want to be a disability masochist

In an interview Ian Brown did with NPR two years ago, a disability masochist is somebody who made the decision to make their disabled child the most important thing in their life and the only important thing in their life. And they commit to that position and then when reality suggests there are other decisions, they get angry about it."

Well, I've started getting angry, and I don't like it.  It's like, I feel like I have to be a one woman crusader for special needs.

For example - the attachment parenting board is currently discussion the issue of praise.  And, a few people said that they shake their head and 'LOL' whenever they hear a parent say "Good Job" to their child for going down the slide.  Now, all I want to do is post a reply, pointing out how incredibly lucky they all are.  You better believe the day my daughter goes down the slide by her self (if that day ever arrives) I will be "Good Jobbing" all over the place.  THESE WOMEN HAVE NO IDEA and it infuriates me to no end.  Not that I want anyone to ever go through what we've been through.  But, their inability to see, and be sensitive to the other's experiences is just so upsetting. 

I already blew up on a post in 24+ Months.  And, of course, it got me no where.  It doesn't feel good to have these feelings.  I honestly think I get myself more worked up about these things than I should.  I think, I'm not giving them the same luxury I'm asking them to give others.  I'm not seeing things from their point of view.  But, then I read their responses over again, and I get myself all worked up again.  I'm tired of being a crusader.  I'm tired of no one listening.  I'm tired of feeling like no one understands and feeling so isolated.  Ugh.  I just hate this feeling.  Anyone else ever feel this way?

In any case, thanks for listening to my vent.

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Re: Vent: I don't want to be a disability masochist

  • Sorry for the weird formatting.  Don't know what happened there.
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  • I often struggle with this too. If only they could walk a mile in our shoes.
    I would be judged non-stop, we over the top praise for things like making eye contact when her name is called. They can think what they want.
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  • I feel the same way.  I praise my kid for taking a bite of a sandwich and putting it back on the table instead of throwing it on the floor.  I praise my kid for sitting back on his knees when I tell him to sit down on the furniture.  I praise my kid for getting off the chair correctly.  I praise my kid for EVERYTHING.  Because there was a long time that he could do NOTHING.  SAHM had this discussion recently and i had this huge long semi aggressive post written in response and I had to walk away before posting it.

    Because, like you said, they have no idea.  We judge what is unfamiliar.  Being in the position we are, we're almost free of that. I don't judge kids having tantrums in public, I don't judge the mother literally dragging a child out of the store, I don't judge a mother who is annoyed with their child because I know I have been in all of their shoes.  These women, will never be in our shoes.  

    I guess I kind of have this weird view of disability.  We are LUCKY enough to wear suits of many colors.  We get to experience a depth to life that most people will never even be able to comprehend much less experience.  We get to love our children in a completely different way that most people.  We learn to communicate with our children even when it appears impossible.  I'm not saying it's easy, and sometimes it sucks and all I want is to never be LUCKY.  But, it is what it is and I'm going to make the best of it. 

    I guess I'm a disability masochist, but more so probably because it's naturally how I parent.  My children are my world and they happen to be disabled.  We can't undo the experiences we have and forget our children have disabilities or treat them as completely typical, because we have been shaped and molded by hospital stays, surgeries, missed milestones, specialists out the wazoo, and OVERWHELMING joy at the little things.  Like when you're 18 month old sits up for the first time.  Such a small milestone in a typical childs life, but huge in my sons.  Or when my son ate mac n cheese at a restaurant the first time after we worked on practicing with kraft at home for so long.  Most people wouldn't even remember the first time they ordered for their child at a restaurant and yet it's a celebration for my family.
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
    st.augbrideJunebug060609
  • edited October 2013
    A lot of people are just never going to get it.
    This exactly. I was having this same chat with my SIL yesterday (she is the mom of an SPD/ASD/CAPD son). 

    I ran into this same problem with infertility. Fertile people will never get what it is like to struggle with infertility. Moms of typically developing children will never really get it. You can't understand what its like to have 5 or more scheduled therapies a week, until you are living it. Anyone who has never walked a mile in (insert your favorite disability) will never get it. They just can't. They can be sympathetic, they can try to understand, they can choose not to judge and to accept that you know what is the best way to parent your child, but in the end, they will never understand how good/easy they have it. They just won't. And I don't mean that to sound bitter. I think I have just accepted it as a fact. 

    DS tried tball this year. He was the only kid who never cried or missed a game. He struggled and struggled, but he tried his little heart out. And he LOVED every minute of it, even though many aspects of it were really challenging for him. When I posted the pics of their closing ceremony with DS showing DH his medal, my brother had the nerve to post a comment about it being a "shame that all kids get medals and trophies just for playing and participating nowadays." I was so hurt, but in reality, he has NO CLUE what it took for DS to "just play and participate." He was potty training his 18 month old while I was still potty training my 4 year old. He cannot see past his own situation, and builds his beliefs around that way of thinking.

    I think a lot of that has to do with all of the judgey/preachy parenting stuff that is so popular in our society today. Everyone has a fav parenting philosophy and everyone thinks that what is good for their child, is good for every child. That's just not true. Keep parenting to the needs of YOUR sweet child, and let the know it alls in each camp consort with one another. You won't change their minds until they decide to be open minded and less judgey/preachy. If your child accomplishes something legitimately hard for them, praise away! Have treats, make a huge deal about it, because it IS a huge deal for you guys!! 
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    crazyjoedivola

  • Love this, Rachel. F*ck Ian Brown. What is more important than the health and well being of your child? Fantasy football? I just don't get it. Praise away who cares what other people do. Do what is right for you and your family. 

    A lot of people are just never going to get it.
    This exactly. I was having this same chat with my SIL yesterday (she is the mom of an SPD/ASD/CAPD son). 

    I ran into this same problem with infertility. Fertile people will never get what it is like to struggle with infertility. Moms of typically developing children will never really get it. You can't understand what its like to have 5 or more scheduled therapies a week, until you are living it. Anyone who has never walked a mile in (insert your favorite disability) will never get it. They just can't. They can be sympathetic, they can try to understand, they can choose not to judge and to accept that you know what is the best way to parent your child, but in the end, they will never understand how good/easy they have it. They just won't. And I don't mean that to sound bitter. I think I have just accepted it as a fact. 

    DS tried tball this year. He was the only kid who never cried or missed a game. He struggled and struggled, but he tried his little heart out. And he LOVED every minute of it, even though many aspects of it were really challenging for him. When I posted the pics of their closing ceremony with DS showing DH his medal, my brother had the nerve to post a comment about it being a "shame that all kids get medals and trophies just for playing and participating nowadays." I was so hurt, but in reality, he has NO CLUE what it took for DS to "just play and participate." He was potty training his 18 month old while I was still potty training my 4 year old. He cannot see past his own situation, and builds his beliefs around that way of thinking.

    I think a lot of that has to do with all of the judgey/preachy parenting stuff that is so popular in our society today. Everyone has a fav parenting philosophy and everyone thinks that what is good for their child, is good for every child. That's just not true. Keep parenting to the needs of YOUR sweet child, and let the know it alls in each camp consort with one another. You won't change their minds until they decide to be open minded and less judgey/preachy. If your child accomplishes something legitimately hard for them, praise away! Have treats, make a huge deal about it, because it IS a huge deal for you guys!! 

    Rachel Sonnier
  • I think I was talking to someone can't remember if it was DH, ABA therapist, friend or mom. That who will fight for DS if I don't do it? No one would do it but me.

    I got mad at the preschool teacher because she asked me if she was allowed to say if DS is overwhelmed with the private therapies. Umm, no. If she was in my shoes she would do her utmost to help her child just like I am.

    Of course, I have to be DS's cheerleader when he pees in the potty and claps. I clap with him. I have to be on it with reinforcers. I put Halloween lights in both of our bathrooms and that is a reinforcer, too!


     


    Baby Birthday Ticker Ticker
  • Well... I failed.  I posted a reply.
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  • I agree that parents of "typically developing" children don't get what it's like to have to juggle the many balls that come with having a child with extra needs. On the other hand, I do subscribe to the whole descriptive praise philosophy, in part because much of the world is like all of those parents.

    So when DS smells or takes a bite of a new food, I simply describe what he did in a pleased tone of voice, "You tried cauliflower!" I try not to say "good job," because eventually "good job" will have to become a more desirable reward. When he tries to wipe his own butt, I say "DS wiped!" because (and this will sound callous and horrid to some of you) he's supposed to wipe his butt after he poops. It's not a "good job-" it's the next step. My son receives praise and hugs and reminders that he makes Mommy happy when he does things, but I am very careful about the type of praise I give and when.

    I grew up with a pretty sheltered cousin who received a lot of praise every time he did anything somewhat useful around the house. He had a terrible time adjusting to adult life and while living with us in college was a terrible slob. He did the dishes one night after a few months and made sure that everyone knew he had done them. My dad, who is not known for his tact, said, "Congratulations. Want a cookie?" My cousin was sunk because he truly expected to receive praise and thanks for contributing to the household.

    I don't think there is one right way. We all have to do what works for us and our children.
    [Deleted User]Assembly_Reqd
  • You make a good point bubba.
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  • Thanks for adding your thoughts on the attachment parenting post. I'm the one who brought up that I WILL most definitely be praising my son for going on a slide by himself! We also get even more excited when he manages to climb over the tiny step to get to a playground without needing assistance, even if he stumbles after, because he has worked his a$$ off to get to that point and so have we. They don't get it. How could they? I'm sure they think eating is completely natural and not worthy of celebration too, but what we would give for our son to pick up a sandwich, sluce of pizza, etc.. and take a bite. Anyhow, I know that most people don't get it and I can't fault them for that. But to laugh at someone else because they do something differently than you? That's just plain sick. People like that deserve to hear it, and while I don't feel like it's my job to educate other ignorant and outright mean adults, I do feel like it's my job to defend and support my son as much as necessary.
    imageLilypie Premature Baby tickers imageLilypie Premature Baby tickers
    thefuturemrskudla
  • I think sometimes people need to hear that they're being thoughtless and breezily superior. They may say, "OH, but there's NO WAY that all the kids we run into and I see X that I judge have a disability!" 

    But you know what? Some of them will be. Some of them are, even if it's not obvious or visible. And sometimes people need to be reminded that when they take things for granted as "normal" and "typical" and then opine and side-eye when a parent or child does something differently, they might very well be ostracizing someone with a disability. And I think people should be MORE mindful of that, not less. 

    Reminding somebody to err on the side of compassion isn't being a disability masochist, IMO. Even when it comes from something you're taking personally. If we as parents don't call for compassion and acceptance from other parents and their kids, who will? 
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    DD1, 1/5/2008 ~~~ DD2, 3/17/2010
    Rachel Sonnier[Deleted User]
  • Thanks for adding your thoughts on the attachment parenting post. I'm the one who brought up that I WILL most definitely be praising my son for going on a slide by himself! We also get even more excited when he manages to climb over the tiny step to get to a playground without needing assistance, even if he stumbles after, because he has worked his a$$ off to get to that point and so have we. They don't get it. How could they? I'm sure they think eating is completely natural and not worthy of celebration too, but what we would give for our son to pick up a sandwich, sluce of pizza, etc.. and take a bite. Anyhow, I know that most people don't get it and I can't fault them for that. But to laugh at someone else because they do something differently than you? That's just plain sick. People like that deserve to hear it, and while I don't feel like it's my job to educate other ignorant and outright mean adults, I do feel like it's my job to defend and support my son as much as necessary.
    I had to say something cause nosoup annoyed me.  Really?  Comparing us asking her to think before laughing at another person's parenting choice to not complaining about pregnancy in front of people with IF?

    I think that would be like us infiltrating all the boards and us telling them to stop complaining about their typical kid issues because our kids have special needs.  I get annoyed reading the posts about kids who "won't eat anything" and you open it and she lists that her kid has eaten more food that my kid even looks at on bad days.  But, I close the post and move on because that's what we do.  

    To know my parenting choices are going to be mocked.  It just made her sound like she thinks she is so superior to other parents.  Really?  Is there any proof that any parenting method is better than another?  No.  That's why some people CIO, some don't, some BF, some FF.  And our kids are all different and all fare differently.  Ugh, it just grated on my nerves to read that she laughs as people because they say good job.
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
    Rachel Sonnierst.augbridethefuturemrskudlaJoJoGee
  • I read the article that they linked to, and I thought a lot of it made sense, but ITA that the discussion turned kind of smug and superior. I'm sure I get judged as being a helicopter mom, and yesterday I told DD that I was proud of her for using the bathroom at school. Sometimes her SPD makes it hard for her to figure out what signals her body is sending her, so even though it might sound dumb to some people I am proud of her for recognizing that she needed to go and taking care of it. I have no desire to be a disability masochist, but I absolutely want to be DD's best advocate. FWIW, I think all of you ladies are amazing :)
    ToastieSimons
  • Thanks for adding your thoughts on the attachment parenting post. I'm the one who brought up that I WILL most definitely be praising my son for going on a slide by himself! We also get even more excited when he manages to climb over the tiny step to get to a playground without needing assistance, even if he stumbles after, because he has worked his a$$ off to get to that point and so have we. They don't get it. How could they? I'm sure they think eating is completely natural and not worthy of celebration too, but what we would give for our son to pick up a sandwich, sluce of pizza, etc.. and take a bite. Anyhow, I know that most people don't get it and I can't fault them for that. But to laugh at someone else because they do something differently than you? That's just plain sick. People like that deserve to hear it, and while I don't feel like it's my job to educate other ignorant and outright mean adults, I do feel like it's my job to defend and support my son as much as necessary.
    I had to say something cause nosoup annoyed me.  Really?  Comparing us asking her to think before laughing at another person's parenting choice to not complaining about pregnancy in front of people with IF?

    I think that would be like us infiltrating all the boards and us telling them to stop complaining about their typical kid issues because our kids have special needs.  I get annoyed reading the posts about kids who "won't eat anything" and you open it and she lists that her kid has eaten more food that my kid even looks at on bad days.  But, I close the post and move on because that's what we do.  

    To know my parenting choices are going to be mocked.  It just made her sound like she thinks she is so superior to other parents.  Really?  Is there any proof that any parenting method is better than another?  No.  That's why some people CIO, some don't, some BF, some FF.  And our kids are all different and all fare differently.  Ugh, it just grated on my nerves to read that she laughs as people because they say good job.
    I just finally got a chance to catch up on that AP post. I got kind of ugly! I can see what Fred was saying about praise v/s encouragement, but that woman who said she laughs at moms who praise turned the whole thing kind of icky. I don't know why people have to be so smug and then get all defensive about it. Can't we all just parent to the needs of our OWN kids and be supportive of one another?? Gee whiz! 

    Do we have any Monkee Mamas here?? Just curious. ;-)
    Warning No formatter is installed for the format bbhtml
  • Thanks for adding your thoughts on the attachment parenting post. I'm the one who brought up that I WILL most definitely be praising my son for going on a slide by himself! We also get even more excited when he manages to climb over the tiny step to get to a playground without needing assistance, even if he stumbles after, because he has worked his a$$ off to get to that point and so have we. They don't get it. How could they? I'm sure they think eating is completely natural and not worthy of celebration too, but what we would give for our son to pick up a sandwich, sluce of pizza, etc.. and take a bite. Anyhow, I know that most people don't get it and I can't fault them for that. But to laugh at someone else because they do something differently than you? That's just plain sick. People like that deserve to hear it, and while I don't feel like it's my job to educate other ignorant and outright mean adults, I do feel like it's my job to defend and support my son as much as necessary.
    I had to say something cause nosoup annoyed me.  Really?  Comparing us asking her to think before laughing at another person's parenting choice to not complaining about pregnancy in front of people with IF?

    I think that would be like us infiltrating all the boards and us telling them to stop complaining about their typical kid issues because our kids have special needs.  I get annoyed reading the posts about kids who "won't eat anything" and you open it and she lists that her kid has eaten more food that my kid even looks at on bad days.  But, I close the post and move on because that's what we do.  

    To know my parenting choices are going to be mocked.  It just made her sound like she thinks she is so superior to other parents.  Really?  Is there any proof that any parenting method is better than another?  No.  That's why some people CIO, some don't, some BF, some FF.  And our kids are all different and all fare differently.  Ugh, it just grated on my nerves to read that she laughs as people because they say good job.
    Ha, completely! I always open the 'picky eater' posts and when I see their kid eats 'only' the typical kid foods, I immediately close it and think how I WISH we were there. Yes, exactly, it has NOTHING to do with the IF/pregnant woman example! It's about respecting those around you.
    imageLilypie Premature Baby tickers imageLilypie Premature Baby tickers
  • I'm definitely a helicopter mom.

    Every day I drop Isla off at preschool, I go with her to put her back pack away, to use the potty, to wash her hands, then I sit her down to breakfast, and then I kiss her goodbye.  I'm the only one usually.  I can't help it.  I feel her teacher's eyes on me and I don't care.  It's what feels right to me.  And you know what, my gut instincts have been 100% right about Isla so far.  So that's what I'm going with.
    I do something similar. About 3/4 of DD1's kindergarten class just gets dropped off and they go to class & do everything by themselves, but I still walk her to class. I *try* to just stand off to one side and let DD1 do her morning routine, but some days she just wanders and dawdles so much that she needs some chivvying to get everything in its place and ready for class to start. Luckily, I have to get her there early in order to get back home in time to work, so it helps that she can take her time -- but I do hope that maybe by Christmas break she'll be at a point where she can do it on her own. 

    OTOH, I've asked her if she wants to walk by herself or walk with me, and I get a little bit of warm fuzzies that she still wants me to walk her in. 

    And I do see some parents of typical first-graders walking their kids in, too, so I don't feel like I'm the absolute only one. 
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    DD1, 1/5/2008 ~~~ DD2, 3/17/2010
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