5.21.2012

My views on disability


"My daughter has a learning disability." I catch myself thinking now and then. It is an odd feeling because most of the time I forget. Then more forms come home from school addressing her progress or updating me on her specialized schedule -- then it flashes to the front of my mind again.


"I am the mother of a child with a learning disability."

I think the hardest part of mothering is letting go of all your preconceived notions and assumptions about how raising your children would be. After all, reading has always been one of the things I do best. I never expected to have a child who struggled so mightily to grasp the concept.

Her condition has not been given an exact name. It has to do with slowed processing of letters into her mind and then into words and then into vocal sounds. So her vocal reading fluency suffers the worst. Some might say they wouldn't want their child to be labeled... and I understand that feeling. No one wants to be told their child is "less than perfect".

I went to the meeting after Bee's initial testing with my claws out and my "Mama-bear" persona all suited up and ready to roar. But the guard came down when we kicked off the meeting by talking about Bee's strengths. It was clear this cluster of people were there to build on all the things that are right about my daughter not tear us down for anything wrong with her. I walked in feeling like I was about to defend my daughter to a gazillion people attending what felt like in interrogation. I left feeling like I was part of a team, working together for her best interests. In that moment I gave thanks, again, that we live in such a great school district.

So despite, the new "label" of Learning Disability, I was relieved. Relieved that the huge struggle we had when we were homeschooling wasn't just me. Relieved to have some answers. Relived to have a plan and goals and a great support system in place. Relieved she would go on to 2nd grade despite some challenges. Relieved all the testing showed she is doing well in so many other areas. Relieved she is happy where she is and doesn't mind all the extra attention (i.e. help). Relieved to have information that says she may well grow out of this and it may only be a stage in her educational journey. Relieved for professionals who I trust. Relieved that it wasn't something worse.

There are worries, of course. Mothering is full of worrying. I guess I worry the most about how she will be seen by others. Maybe because I know how I see her but I can't control whether other people will give her a fair chance before they decide on her worth. There are so many stigmas shading "special-ed" students and "normalcy" is such a valuable commodity in public schools. I know kids can be cruel.
I worry they will see her through the haze of their notions of "disability". I worry her peers will judge her character by what she can't do vs. what she can. I worry their ideas about "normal" will color their view of her...

Like a dirty window.

But mostly I forget to worry because I'm busy being her mom. This is the only daughter I have... she is my "normal".

Winning the 1st grade runner-up in a local art contest.

And She is so full of talant and other skills...

She writes imaginatively,
Puzzels and deduces problems logically,
Does great at mental math,
Loves science and history,
is creative and artistic,
Desires to learn and to please,
Works hard and is diligent,
is kind and makes peace,
Shows above average conversation and vocabulary understanding...


So mostly my attention is too caught up in her long list of abilities to single out her one known disability.

Maybe that's just another role of a mother -- to not let things muck-up the way you see things as a parent... To wash away the unfair social stigmas, biased ideas and skewed logic that could cloud your focus on the beauty of your child's true being... To be your child's advocate, supporter, encouragement, and life teacher... To make sure the "windows" through which others see her are as untainted by misunderstanding and misinformation as possible.

I can do that.
I am a mom.

I do windows. 

Love,
Seeing To The Heart in NE

10 comments:

  1. She is a beautiful and talented girl who is VERY lucky to have you as her mama. :)

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  2. Raimie, dear, I have been thinking about some of these things due to a recent ad I've been hearing about 1 out of 110 kids are now being diagnosed with autism. I'm not sure how I want to think about this. I think the take should be that it is a good thing that kids are getting the help they need, not that we as a society are doing something wrong so there are more of them. I don't believe there are. I believe they are finding them sooner.
    My belief on "learning differences", is that everyone falls somewhere in the spectrum of very good, to very bad (to put it simply)in any given skill. My husband is a very poor reader, he was in reading classes is school, he is on the high end of dyslexia (personal view). My son would not be reading to the level he is today without special reading help, (it was phonics that did the trick for him), and I had my daughter tested in 4TH GRADE, mind you, because of memorizing difficulty. I still laugh at the results of the testing, since it came back with "short term memory problems"! I knew that! But, it did mean help for her until she could use a calculator. (Takes so long to do math before then, if you can't learn your math facts.) And all the girls can't tell you directions or right or left to save our lives. You know my family, you know how bad off we are. :) What fun would it be if we all had the same strengths? Or weaknesses too, for that matter. It's all out there, some just shows up more than others.

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  3. We are 14 years into this journey and I have always felt that it is just a "different challenge" than the other kids. They have challenges with math that my kid can whip through without even thinking...so it takes him longer to process what he is reading, but he gets it eventually, and even that is improving. His is a bit different of an issue because he could read it out loud smoothly and read fluently to himself, but have absolutely no concept of what he had read. He didn't process the words as having meaning, they were just words. He is getting much better and even scored very high in the national average of 9th graders this year in 9th grade. I have spent so much time working, pushing, shoving, dragging and being incredibly proud of his progress and sympathetic of his struggles but it is worth it. Even if he had never learned to read well, he is still a demon at math and a whiz at building anything he can think of in his mind.

    I can certainly sympathize with you on the reading thing though! It is my favorite thing to do and it makes me so sad that he doesn't share that love...but he is getting there. We let him listen to lots of audio books as he reads along and that helps some.

    The great thing about these kids that have LD labels, is that so often they are Twice exceptional, they may ahve an LD in reading but in math and art they excel beyond your wildest dreams. Focus on what is great. You are doing a great job seeing what she IS instead of what she ISN'T, and that takes a while sometimes!

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  4. I'm so glad this was your experience... to feel the support of the educators, in love with learning, in love with kids and working together to give kids a love of learning. I have the feeling that in her own good time, she will bloom. And you won't be able to stop her.

    Labels are helpful when they point toward facilitating learning in individual ways rather than being a defining point catering to limitations.

    Loved your post.

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  5. Raimie,you are such a good mother! Not all children get on the bus at the same time so not all children can be expected to grasp the same concepts as their peers at the same time. Just because your darling little girl has an IEP doesn't mean she needs to be labeled! Keep encouraging her all you can (know you are!)The purpose of an Individual Education Program is to help students, not label them! Love your attitude, keep your chin up! The professional people on her team will be supportive and give you some ideas, also.

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  6. Oh my goodness Raimie!!! I am almost in tears and I'm reminded again why I love all my blogging friends so much! For the last 4 years we have struggled with a learning disability in our house and I've never been able to talk freely about it on my blog like you have just done. Thank you for sharing from your heart and about your sweet daughter. We have had a loooooong haul here with lots of help and lots of tears along the way and finally, finally... The future is getting brighter and brighter. I would love to talk anytime if you need someone who understands... It's all very fresh in my mind as we continue on this journey day by day. And through it all I've learned SO, SO much for myself. Love you and keep up the good work. From another mama bear who is so thankful!

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  7. This is beautiful. Have been through the whole spectrum of feelings your dealing with as Kekoa struggled through reading the first half of the year. Something has clicked for him and he's improved a lot, but is still behind. I'm finding that as mother's I think we worry more than they do. It's not as uncommon anymore for kids to go different directions for learning help, so I don't think they will have to deal with the same "special ed" stigmas that we did when we were young. Hugs, Momma. You are awesome. And the pictures with this post are BEAUTIFUL!

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  8. I loved this post, Raimie. Seriously. Loved. It.
    xoxoxoxox

    Your flapping friend from afar!

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  9. dear with new insight,

    I really appreciate how you wrote this....it has all been quite an unexpected curve thrown in. And yet isn't there always going to be the unexpected curves? I love how 'dan in real life' puts it at the end....something like:
    When it comes to expectations in life, the one thing we CAN be sure of.....
    "Expect to be Surprised"!

    love,
    We have had more than a few so far
    in
    NE

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