Saturday, July 31, 2004

some stuff I came across online

And wanted to pass it along.

What I Learned in Parenting a Child with Special Needs - A Letter to God By Pat Linkhorn

Never let it be said that I won't admit it when I'm wrong or that I never apologize to people when I should. I thought you'd made a terrible mistake when my child was born and I said some pretty rotten things to you and about you. It seemed so unfair. I couldn't believe that you'd given me this child as part of "the plan". I was sure you'd made a horrendous mistake and I'm sure you got pretty tired of me begging for a miracle in one breath and then turning around and saying all those mean things about you in the next breath. I'm truly sorry.

Anyway, you were right. This child has changed my life. She's made me be all that I'm capable of and more than I ever imagined I could be. She's made me see things I would have overlooked before.

Take this compassion thing. Yeah, I knew what the word meant and I really thought I was back then, but I turned away when I saw a person with a disability and sometimes I even stared when I thought no-one was watching. What a jerk I was. My brand of compassion was more like pity for all that they weren't and I never saw them for all that they were. But.... I thought I was being truly compassionate. Thanks for teaching me that.

Then there was that tolerance thing. Sure I thought they should have equal rights and opportunities, but would I have gone out of my way to make sure that happened. Probably not. Now I live with a little person who I expect others to be tolerant of. Makes you realize how tolerant you really were before and helps you to understand where other people are coming from.

And the minority thing. Coming from a middle class white background doesn't even begin to prepare you for all the prejudices and oppression that you face when you become a minority yourself, via your child. Talk about a learning experience! It makes you empathize with all minorities.

Now I have to thank you for all the things you've taken away from me. Pettiness is one of them. When I think of all the things I used to worry about! What a waste of time and energy. But, I have to always remember how I was and how I am now. Those who haven't experienced what I've been through won't know the difference. I have to remember how I used to feel when I deal with them and I have to remember to understand.

Monetary values were the next. I recently listened to a speaker and one of the questions she asked was, "If given the choice, would you choose 30 million dollars or peace and happiness?" I was in a room with close to 30 parents who had children with disabilities and not a one of them raised their hand for the 30 million. (Although I briefly thought that 30 million would buy some quality child care and help further the cause for equality.) However, I did realize that it wouldn't make my daughter see, nor would it replace things many other children needed. Ten years ago I would have been convinced that the money was my answer to happiness. Now it's secondary to what is really important.

I know now that all the times I accused you of deserting me, you were, in fact, carrying me just as the "Footprints" poem says. I also know that the bad times are what helps me to grow, so I don't take them so personally now. But, just so you'll realize that I'm still me and that I'm still going to need a little help, (and since I've apologized so nicely) could you give me a small miracle and make my little girl see? Well, if you can't, I guess I understand. Miracles might be in short supply today, but just for the record, thanks again for letting me see.

Copyright © Pat Linkhorn

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I read this at an autism/asperger's site I frequent. It broke my heart and I could relate to most of it. We are better off than some people who live on the spectrum. Abby has a lot of potential for leading a "normal," productive life. That said, sometimes when we overcome one challenge, the door seems to open for a new one. Some of the difficulties described in this poem we have recently left behind, some of them are battles we are still engaged in everyday.
I wanted to share this with y'all because in the past some of you have appreciated being able to pass things along to people in your lives or have liked getting a deeper understanding of the disorder.
Anyway...

Imagine…

~ Nicole Lannyk, mother of James, 4yrs old

Imagine

No I-love-yous…

No family picnics, parades, or weddings…

No friends or playmates…

No common sense…

Imagine…

A 4yr old that doesn’t understand what

Will happen if he runs in front of a car

Or jumps into a pool…

Imagine a home looking like Ft. Knox

Just to keep your child safe….

Imagine…

Being told your child has a neurological brain disorder

And maybe never be able to speak, function in society,

Live alone, marry or have children, your heart sinks…

Imagine…

After waking your child in the morning, if you don’t do

Everything in the same order as the day before, at the

Precise moment it’s enough to ruin their entire day…

Imagine…

Watching your child on the first day of school stepping

Into the handicapped bus…

Imagine…

Having your home invaded with teachers, therapists,

State reps, child psychologists for 35hrs per week of intense

1 on 1 therapy in hopes of a better life someday…

Imagine…

Watching the agony on your child’s face giving you the

“Mommy why are you letting them do this to me� look while

Doing numerous EEG’s, blood work, x-rays, and testing to

Figure out how to help them feel better…

Imagine…

Just how many “your kids a brat� stares you get in public

Simply because your child cannot handle social situations

Including a simple trip to the grocery store…

Imagine…

What autistic children, parents and families go through

On a daily basis…


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