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  • 2/27/2012 5:36:16 PM

    My nephew Jack, 25 months, the son of my closest, dearest friend, and the second half of the love of my life (the other half being his sister Alice, 4 yrs old) was diagnosed with Autism Spectrum Disorder today.

    This is what I want to say:

    I don't care that he has Autism in that it doesn't change who he is. It doesn't change the fact that when he laughs, your whole heart melts, or when he smiles at me, it feels like my heart is going to burst into a zillion pieces. He's smart, and points out trees, and knows the characters in Mickey Mouse and Cars and knows way more than he can communicate to me. I know he's saying words when he 'babbles' and that I just can't understand them. When his sister was born, I didn't know I could love anyone as much ever. I didn't know my heart could even be that full. When he was born, my heart grew even more, and while I didn't know how that would feel, I knew it would. I guess Alice was like skydiving when you've never even been in a plane, and Jack was like doing it solo, higher up, over a jungle, when you've never even seen the color green. That probably doesn't make sense, but it's like I knew it would be amazing, but I didn't know how. I see the way he lights up when he sees someone he loves, or when he's going to get to do something he wants to do, like open a present. I remember to pay attention when he rests on my shoulder, which I didn't do with Alice. He's so amazing, and so incredibly adorable. He's going to be happy and successful in life, and I knew that three hours ago the same as I know it now. I don't care about Autism like that. I know it doesn't/won't limit his choices, that he'll still love trains and cars and trucks and he'll love songs and dancing and he'll find what he loves as he grows up, and he'll do that. I love him the same as I did three hours ago, which is more than any little words could ever hold.

    I know that Erica will find all of the services he can get that will help him. She'll read, and talk, and learn, and he will have all the best chances at life. He'll get the best education and the best therapies. I feel that he's so lucky to have her for a mom.

    But I feel sad. Sad that this is a world that Erica will have to get to know. Sad that I don't know more about that world, and that all I know is that it's hard. I feel sad that she's going to have to manage so much more now, with all the therapies and school and everything. I am sad that she feels overwhelmed, that there's nothing at all that I can do except listen, and sad that I live too far away to be particularly helpful.

    And I feel really, really angry. I think her life has been hard enough, and she doesn't need more. I feel angry that the world isn't set up for her to access what she needs for Jack and her family easily. I feel angry at whatever is causing everyone in the world to have Autism, and that it got this precious little Jack. I feel angry that she doesn't have more of a support network, and that I live too far away.

    I also feel scared. I'm scared that Jack will be labeled and stigmatized and that he won't get as much love as he deserves.

    I live too far away, I don't know the world of Special Education or Autism. I have stupid, loud opinions and I can't keep my mouth shut. I know I can love them enough. I know I can do what I've done all along, which is show up. I can babysit. I can take Erica out. They - Erica, her kids - are so incredibly important to me. Those kids are, no doubt about it, the best thing about my life, and Erica is my best friend. I want to go there, hug them all, never let them go. I want to help, but I don't know how, and I'm afraid that she isn't going to need someone who's greatest gift is showing up.

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