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The Pain in My Heart

11 Jan

INTELLECTUAL DIS-ABILITY

There are no words to describe how my heart hurts when those words are used to describe my son.

I feel the sadness take over my soul. The well starts to fill, and if not contained I might very well overflow today.

I listen to all my friends talk and prepare for their child to enter kindergarten. It is all really simple stuff like, what teacher will they have, or will they ride the bus?

I wish it was that simple for us. No, it isn’t. We have to undergo another round of testing, followed IEP meeting after IEP meeting.

We have to fight to get the extra help our kids need. We have to be prepared to go to war for them.

My child is not disabled.

We are all human aren’t we? We aren’t so different inside.

So here are my 3 words for today.

Here are my 3 words to explain how I feel about my son. Here is how I feel it should read.

Today I was informed that the school psychologist is suggesting that Blaise not be completely mainstreamed. Why? She feels that he needs to be labeled as being, “Intellectually Disabled.” God, that just burns me up, it hurts.

Does my son have learning disabilities, of course. I know plenty of “typical” people who have learning disorders as well. I know they are trying to get him the best care possible at school, but my heart is heavy right now.

I want my son to get the best education possible. I want him to have as “normal” a life as possible. I want him to love school and love life. I know that the labels are just there to get “services” for school, but I hate them. I hate labels. I hate it when others label my son.

I hate that I even have to fight for him to get an education. I hate that I have to fight to get him an aid so that he has the best chance at learning. Oh let’s not forget the aid to help him stay away from food, you know because HIS LIFE DEPENDS ON IT!

Why, why is this even a question. Why with all the information you give people they think they know better. They think that your child has an eating disorder that they will grow out of. They think that your child should be able to learn to control themselves around food. They think that sheer will power is all your child with PWS needs. I wish they only knew. I wish they knew what it was like to be on a 24/7 vigil for your child. To wake up in the middle of the night and say, “oh crap I left the fridge unlocked.” To know what it is like to never get a full night sleep because you are always listening, always waiting for the moment your kid gets into the food when your asleep.

Blaise has it tough. He has 3 diagnosis. Prader-Willi Syndrome/PDD-NOS(autism spectrum disorder)/Sensory Processing Disorder. This is a lot for one little man to deal with. In saying all that do I think he can handle school, YES!!! ABSOLUTELY. Do I think he needs an aide full-time, YES! ABSOLUTELY.

I will keep an open mind as I go into this meeting with the school. I will think about what they are offering. I will also be ready to go to battle if I have to, whatever it takes.

This is just a normal day for us. There is always so much, so much to think about, so much that weighs on me. Today though I am in a valley. Feeling sad for my son. Feeling sad for his never-ending fight in life.

As the parent of a child with special needs we already fight so many battles at home. Why, why I ask, should we have to fight for our children to get an education? I will never understand. ;(

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8 Responses to “The Pain in My Heart”

  1. Beth January 11, 2012 at 1:49 pm #

    Thank you Rachel. Keep fighting. As awareness grows, people will understand. You are a true warrior, for yourself, your son and for PWS.

  2. barbarapotter January 11, 2012 at 1:51 pm #

    This means so much to me too. Want mt Blaisey to have the best education possible. He has so much to offer to the world.

  3. Cynthia January 11, 2012 at 1:59 pm #

    I too have a differently abled son and I am all too familar with the challenges of raising a happy, healthy, well adjusted and educuted child who is differently abled in a world where he’s viewed as less. He’s fortunate to attend a fully inclusive school where his peers don’t treat him differently and where he’s taught he’s valued, important, bright, and part of a community.

  4. Jill January 11, 2012 at 2:09 pm #

    I hate that you are having to battle for Blaise. No way around it, it stinks and is not fair. Blaise is blessed to have a Mommy who WILL go to battle for him. I am hear if you need a friendly ear. (-:

  5. Stormy January 11, 2012 at 6:30 pm #

    Love you girl and although mine do not have the same struggles, I so get what you are saying. So thankful I am able to homeschool!

  6. Michael De Rosa (@MichaelDeRosa) January 12, 2012 at 3:28 am #

    Love your message, and the pics. Totally agree with People first language. Though we still fight for inclusivity and People First Language, we also can draw strength that there are lots of grass roots movements -your blog, for example- that are advocating for people with disabilities to be seen as people first!

    Blessings,

    Michael
    http://www.passion-4-life.org
    PS. may I use some/all of your pics on my site?

    • rachyrachp January 12, 2012 at 11:31 am #

      Michael,
      You can repost anything I write and post. I would be honored.

      Rachel

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