Monday, March 26, 2012

Room for love

Kate Winslet was on a talk show today speaking about a book she co-wrote called, The Golden Hat: Talking Back to Autism. It's to bring awareness of the silence Autistics endure. I believe the book's contents are pictures of children along with various celebrities, who all don a black felt hat as a symbol for the silence, and also for the hope of breakthrough. As Kate so beautifully said, expressing yourself is every child's basic human right. The book will be out tomorrow.

There's nothing more devastating to a parent then finding out their child has some kind of disorder, especially one that keeps them from progressing in a "normal" society. I thank God every day for the progress Julia has made. First, I credit her for working hard. Then her teachers and peers. Then me. It's a group effort. I admit, I chose the less invasive route, keeping things organic; I didn't want her to go to a million sessions of therapy that she may or may not like or even respond to. I kind of knew that her best way to develop was in a regular environment. So basically all her therapy came at school in little chunks every day. I could have sent her to every therapist under the sun, and maybe I should have. But something told me it would stunt her on an emotional level. I've watched her react to people telling her to DO THIS! DO THAT! and I would see her shrink into herself and cut off her responses. We'd get in the car and OH, Julia's back.

But in the beginning, I was scared. Why wasn't my little girl saying anything? Then I'd get mad because she wouldn't listen. I'd be right there speaking to her and she would walk off somewhere as if she hadn't heard a single word. It was so frustrating to go out in public and not be able to control my own kid. Then I was sad. So sad. Would she ever have a normal life? What did I do wrong? I must have been a horrible mother! And then, why? Why me? Why Julia? I was so alone. None of my family wanted to come over and visit or babysit. But I started to formulate my own thearpy. I read and read and read to her, and asked querstions. Even if she didn't answer, I still asked. Then I used puppets to teach her how to say her name. "Hi, my name is Toby the dog. What's your name?" I'd say it for her, "My name is Julia." Months passed and she finally walked into the room and said to me, "My name is Julia," and walked out.

Now, you wouldn't even know. She's a beautiful, delightful bright girl. Artistic, funny, loving. I had to wait many years to hear her say she loved me, and now she says it all the time. A mother's greatest gift.

Sometimes she will come up to me and say, "Mom, I remember when this or that happened," and it was from a time when she was lost to the world—or so I thought. Just remember, no one is ever lost. No matter the disability, every human is taking in and experiencing the world around them. Can you imagine how painful it would be to not respond, not laugh, not say your name? Can you?

You can help by being open-minded and by giving love. There's always room for love.

7 comments:

  1. She has a good mom.

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  2. Amy, you are a brilliant mum - one of the best. I think you are so right not pushing her from session to session for therapy. Julia is a beautiful talented little girl. To me, you are seeking out the best of what's already there and the potential of all that she can be. Love Molly xx

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  3. A mother knows best, and you are the best mother to know how to give your child the gift of communication. You are such a lucky person to have this wonderful, loving child and she is so fortunate to have such a wise and loving mom.

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  4. Amy...my Jessica, my wednesday's child, full of woe, my baby with the laughing eyes, struggled and struggled and struggled at school. We encouraged, tutored, did everything we could think of. But then, because of life and work, we moved, and we moved and we moved, and all the moving broke her little heart. Then we stumbled upon a wonderful man...the dean of admissions at her school in Atlanta. He looked at her test scores and said "something needs to be done, and I know the person to do it". So off my baby with the laughing eyes went and met Wendy, and Wendy said, I know what your issue is, because I have it to. So Wendy and Jessica lived in their own world and found a way for Jessica to function in the school of this world. And she soared.
    I once asked my Wednesday child what ADD was like and she said Mum, you will be in class and the teacher will tell you tomorrow you have a very important exam and here's everything you need to know about it, and I am going to tell you this only one time. But outside, on a branch is a little bird, and he is singing his heart out, and you just can't not watch the bird.
    Now I know that may sound silly and irrelevant, but it explained her world to me...and after that we knew how to help her.
    Now, Amy...I wouldn't change one single thing about my Jessica. She functions in life entirely outside of what everyone considers normal...but what's the big deal about normal?

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