Posts Tagged ‘Advocacy’

International Day of Acceptance

I am bogged down with emotion as I prepare for another meeting with Chloe’s school today. My heart, my resolve, and my brain are all very tired and stretched thin. I would love your prayers today if you think about us.

Today, January 20th, is International Day of Acceptance. I was going to attempt to write a wonderful post about what this day means to me and to my family this year. But, as I said, I’m a little emotionally-spent right at the moment.  But in re-reading my post from last year, I have to concur that that is what International Day of Acceptance means to us.  You can reread it here.  🙂

We all have our Wheelchair Heart t-shirts to wear today — even my dad has one to wear this year!

Today we are celebrating and embracing Zachary just the way he is … for it is his disabilities that make him who he is  … that make US what WE are.  And the more I can educate the people around us on his hidden disabilities, the more he will be accepted and embraced and empowered.  Really.

Today we celebrate Chloe just the way she is. . . for it is her disabilities that make her who she is.  She is a strong girl with a perseverance that just won’t stop.  She has a tender heart that has room to love a million more.  And the more I can educate the people around her the more she can live her life to the fullest without being held back or pitied.  For it is pity that will slam on the brakes to her success.

I wear my t-shirt proudly today.  I’m very proud to have Zach and Chloe in my life.  I’m very proud to be a part of the disability community.  I’m very proud to have many friends who live life with a disability.

Educate. Embrace. Empower.

(Again, read last year’s post here.)

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Vision for the Future

Part of what we read to the team at last week’s annual IEP meeting (ARD meeting in Texas) was our life vision for Chloe.

I wrote a life vision for Chloe for several reasons.

First, a lot of people have a difficult time seeing past Chloe’s (and other’s) disability enough to see a person.  It is hard for them to see Chloe as a person with potential instead of just getting stopped at her needs and deficits.  A life vision helps people see past Chloe’s disability.

Second, at a school planning meeting, the focus is on Chloe’s education for the next 12 months.  While it is important to plan for the next 12 months, it is ultimately important for the school team to understand that we, Chloe’s family, are planning for her life.  These teachers may only have Chloe for one school year, but we are in this thing for the duration.  We have plans that stretch beyond the next 12 months.

Third, it is a very important reminder for us of where we are going.  We’ve got to have a goal and a destination.  It is the bar with which we measure decisions along the way.  If what we’re considering doesn’t keep us on the road for what we envision 20 years from now, then we need to choose differently.  Having a life vision for our children — especially our children with disabilities — helps guide our decisions and our choices today.

So I read our life vision for Chloe at the meeting last week.  It was well received and appreciated, I think.  And I think it serves as a way to remind everyone of the bigger picture of Chloe’s life and what lies ahead for her depending on our choices today.

I’m sharing our life vision for Chloe with you today.  If you are the parent of a child with disabilities and haven’t written a life vision for him/her, I encourage you to write a life vision for your child today.  It truly helps guide you as you make decisions big and small . . . and helps assure that you won’t lose focus of where you’re headed.

Here’s ours:

We have a life vision for Chloe.

This vision includes independence and value.

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It is important for everyone who works with Chloe and supports Chloe to have a clear understanding of our vision for her, for it is this life vision that drives every decision we make for her today.

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In general, we will have succeeded in preparing Chloe for a life of purpose if she can:

  • have meaningful friendships and relationships with whomever she chooses

  • be an active and  contributing member of her community

  • feel valued as a person

  • pursue her own interests and dreams

  • utilize resources to support herself

  • have a job that pays better than minimum wage

***

Until Chloe can better tell us what her dreams are, we are basing our dreams and visions for her on her current interests:

  1. Chloe loves music and anything electronic.  We see Chloe as an adult maybe working with electronics and perhaps running a sound board.  Chloe has a fine ear for music and is adept at working different pieces of equipment.

  2. Because of Chloe’s gentle spirit and love of animals, we also see Chloe maybe working as a veterinarian’s assistant and caring for animals that come into the clinic or that are boarded at the clinic.

***

As Chloe shares her dreams and visions with us, this list of possibilities will no doubt grow.  For now, these are some roles we envision Chloe in as an adult.

***

With every decision that we as Chloe’s family are faced with, we must ask the question, “Will this option get Chloe closer to the vision that we have for her, or does this get Chloe off-track for reaching these goals and visions?”  And in the end, if the decision doesn’t get Chloe closer to reaching the life that we envision for her, then we must adamantly reject that option.

Giving Up

I had a sobering conversation with a friend recently.  He told me about a friend of his who has a child with a disability.  They had talked a little bit about my fight for inclusion for Chloe and the troubles that we face in that journey.

Not surprisingly, that journey was not unfamiliar to my friend’s friend.  She knew that journey well from walking it with her now-grown child many years ago.  But it was her words that made my heart hurt deeply.

“I gave up,” she admitted.

She had tried to fight the fight.  She had tried to rally the troops.  She had tried to educate and inform.  She had tried to advocate.  But she finally just gave up out of pure exhaustion.  She was spent, and she was done.  And she gave up nearly 2 decades ago.

“I finally realized that I was the only one who cared,” were some more of her painfully honest words.

<sigh>

She didn’t have the comraderie that I have today.  She didn’t have the ease of research and availability of support and information.  She was a pioneer.  And I think she was a brave one.  She tried.  And I salute her, and I thank her, and I mourn with her.  For her and for her child.

Do stories like hers make us falter and decide it’s just not worth the fight the tears and the stress?

Or do stories like hers strengthen us, adding to our resolve and our stamina?

While her story made me so sad and her words have invaded my thoughts often since that conversation, I think mostly I have added my friend’s friend and her grown child to my list of reasons to keep up the fight.  To keep on educating and informing and fighting for the rights of people with disabilities – namely my 9-year-old daughter.  For, ultimately, it is, of course, all about Chloe and all for Chloe.  But the truth of the matter is that every victory won for Chloe, every right that benefits Chloe, affects a whole group of individuals who are fighting for their rights.  And I am proud to be advocating for them . . . for her . . . for him. . . .

International Day of Acceptance

Tomorrow, Jan 20th, is the International Day of Acceptance.  International Day of Acceptance is sponsored by an organization called 3E Love.  The mission of 3E Love is “to create and market products and services that embrace living life no matter the obstacles, and by doing so, educate society and empower those with disabilities to love life.”

We have ordered t-shirts to wear.  I have a magnet for my car.  And Chloe is passing out sillybands to her class.  We are ready to observe the day.  We are ready to celebrate the day.

International Day of Acceptance is a day set aside to celebrate life — namely the lives of people with disabilities.

To accept people with disabilities.  To embrace them.  Not to wish that they were more like us.  Not to feel sorry for them.  Not to ignore their disability.  But to fully accept them and to fully accept their disability.  To embrace them exactly like they are — for it’s their disability that makes them the person they are.

To accept people with disabilities.  To embrace them.  Not to wish they fit into our world a little more easily.  Not even to help them adapt to our world.  But to embrace them so fully that we adapt our world to fit them.

To accept people with disabilities by educating those around you.  Some people need help to know how to accept others and to know how to accept others’ differences.  The more you are accepting and the more you talk about being accepting, the bigger the impact you can have on those around you.  People will learn by watching you accept people with disabilities, but they also need to hear your words and your thoughts about how and why you choose to accept others.

Accepting people with disabilities; thus, empowering people with disabilities.  If our community is totally accepting of my children, then my children are empowered to enjoy their life.  When people in our community adapt their world to fit my child exactly like she is, then she is empowered to excel right now today.  Not waiting on a cure.  Not waiting on a miracle.  Not waiting on another day when people are more comfortable with her, but she is empowered right now today to live her life to its fullest.

That’s what International Day of Acceptance means to me and to my family.

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