Wednesday, July 25, 2012

Livin' on a Prayer.

Addison was diagnosed with Atypical Autism, or what they call PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) on Friday at our appointment. Dr. S was really caring and kind and he played with Addison a lot, which she loved him for. Obviously, autism in our case is just a label for the problems she developed due to her regression - its not a stand-alone diagnosis. We aren't upset about this,if anything, it will allow her to get more help and more hours of therapy so we are praising God. That said, its still hard to hear... and accept... because the word that really stood out to me was pervasive. That was the word that hurts - its a word that says she's not going to wake up tomorrow and 'snap out of it'. But the impact on her development has been pervasive, for almost 11 months. We have had small victories, and bigger setbacks. She's made forward progress, no doubt about it, but just doesnt retain so much of the information learned. The fastest way we came to peace with this though is knowing that Addison is our sweet Addison and her developmental issues were there anyway, with or without a label. She didn't 'catch' autism by being labeled with it, the issues were all already there, but without a name and therefore without much direction to head in. So by accepting the label, we are embracing the idea that greater help is out there and is within our reach now. It by no means will stop the search for medical answers, but there is a wealth of information and resources out there now that we have access to and that feels good.

If I express any disatisfaction with the the progress she's made since this began, its not an attack on her whatsoever - I take it as a personal failure to provide her with enough resources for forward progress...and then I try harder. If I make a comment like, "She seems to really be struggling to grasp the idea that water is dangerous" I undoubtedly will get a response automatically that starts with "But she does __________ so well!" or "All kids are like that at this age". The dismissal, where a parent's concerns are brushed off by everyone around them. I know my daughter better than anyone in this world, and right now I feel like more than anyone, I see both what is successful for her, and what her unique struggles are. When someone dismisses our concerns, after everything we've been through, it feels like they are saying that she would still be 'fine' if I didnt spend hour after hour at therapy. That she would just talk with or without the extra help. That I don't need to worry because one day she'll just take off and 'be normal'. Spending my entire life helping her grow and succeed at the fastest level possible is okay with me. I don't want her to be simply tolerated for being different, I want her to achieve the highest possible development she can, just like any parent does. I know that no matter any limits her body has in place, that I want to know I've exhausted myself getting her to the place that she is. I can't rest, I can't stop pushing forward. I can't change everyone else and the world's sad outlook on people with disabilities, but I can change her reaction to these people. She will rise above the stereotypes, the negativity and the people who despite the diagnosis, will swear there's no way she is autistic. You're right, though, because she 'is' not autistic. It doesn't define her, doesn't limit her, doesn't mean anything at all in terms of her life, really.

At the end of the day, God made Addison into the little person she is and the person she will be... He knows where her progress will be at 5, and at 95. He knows the length of her life, but he's entrusted me with the breadth of it and I take that responsibility very seriously. Sometimes I get the feeling people think I should be satisfied with the baby steps she makes, that I should maybe just be okay with how things are today. I've witnessed the hunger for 'more' that comes with complacency. You think, "Okay, I'm doing everything they told me to do. Maybe we should just stop pushing so hard. Maybe we should just accept this is what is going to be."

But I can't.
Some people wonder why I can't just accept her how she is today. Maybe it makes them mad, or maybe they simply don't understand. I LOVE who she is today. I EMBRACE the person she has become, and love her immensely. But when I think of tomorrow, I am not READY to settle for where we are at now. I never will be. I will push her, raise her up, love her to pieces. I'll fight for her and with her because I don't believe God placed any limitations on her. Our faith and steadfastness to God and to Addison's future will keep us moving forward, whether by miles or inches at a time. She will learn, as I did, that you never lower the hurdle to meet your abilities, you raise your abilities to meet the hurdle.

Addison, babygirl....I'm prepared for a lifetime of hurdles and we don't plan to slow down one bit as we approach them, do we? I'm so proud of you. Your smile is contagious, you make us just crazy with joy. You are going to do amazing things and your story will be heard around the world and maybe someday, someone will be reading this.... and they will keep fighting their individual battle because of you, strong girl. Maybe one will come to God as we have and accept the limitless love he has covered us with and the endless freedom that comes with it - a freedom from the struggles of this  Earthly world. I hope and pray one day you'll be reading this and know just how much you were loved, and how you came to be just who you are.
We love you princess.


  1. Very word you wrote is exactly how I feel about my son, but you said it much better than I ever could hope to . . . Here's to forward progress!!!

  2. WOW.Just WOW.You are such a great advocate for your girls.I love your inspiration and drive and faith.I love that.You are so right about saying that the dx does not define who she is.
    A person once told me that you can either HAVE a disease,syndrome etc or you can choose to LIVE with it.If you live with it you don't let it stop you from doing anything.
    You are a great moma.

  3. Wow is right. I are a wonderfull mother and person. I am glad you have some answers and you can go forward. Keep us posted. Praying for you all.

  4. kim, adam and addison (also audrina, brrooklyn and lily. I read your post earlier today. had to think about how to say things. I know you have heard people say before just give addison time, she will be doing things just all the other kids in no time. as you have said before you have a strong faith in God. You can only fall in love with her when you see her bright smile, and i have never met her in person. She has bright eyes and a personality all her own. you and adam are her best advocates. keep praying and fighting for her. as you said in your post, this is God's plan. we may no know what that may be but we have to trust that he will guide addison and you along his path. you can see by looking at her photos their is something in that bright smiling face of hers. though you may never know what that is you have to keep fighting that she has the best life possible and she is happy! she has a ton of people praying for her and your entire family. keep up the hard work, thats what us parents do!! you are a great mom, lean on your faith, family and friends when times get tough.

  5. You are such an inspiration Kim! I applaud you for your strong faith, love, determination and patience. Addison, Audrina and your two other girls are so lucky to have you and Adam as their parents. I'm sure this cruel world isn't going to make it easier for you, unfortunately, but your immense love for your girls and for God, I know that He will carry you through when it becomes a bit too difficult to walk on your own. Thank you for loving them soooo very much! They are absolutely beautiful!