Avery Grace

Avery Grace

Friday, October 21, 2011

The flip side of Progress.

It's easier to remember to blog when you have just been through a firestorm. Blogging has become a way of therapeutic reflection for me, a means to escape the moment of chaos, take a deep breath, and decide to choose gratitude over anguish, and peace over frustration and sadness.

I remember when Avery was first diagnosed with Autism. Although I knew she wouldn't "outgrow" it, I also assumed that she would be verbal, understand and follow simple directions, and at the very least be "with us" some of the time. I was mistaken. Well, at least so far.

I remember longing for time to fly by so that we could happily reach an "easier stage" when we didn't have to be 100% hands on all the time... yet here we remain, with a now VERY tall 5 year old, who is beautiful and loving, but very much developmentally below our 13 month old. Imagine a 4 foot tall 13 month old...(but without the imitation skills and social abilities)... it makes for some interesting measures in childproofing, eating, diapering, dressing and so on. I know longer wish time away. In fact, I wish we could pause it most days. Today I can handle this... even with poop smearing, curtain pulling, climbing that results in tumbles and falls, sleepless nights, random, inconsolable tears, silence.... I can do it. Not alone, but together, we are doing this.

I think a lot about what it means to truly live, verses to just exist and move through the motions. I worry about what Avery feels but can't tell us, what her life will turn out to be like, and how she is lost in her own body and mind... trapped if you will. And then I take a deep breath again, relax my mind if I can, and let it go. The truth is, we are so busy keeping Avery busy with therapies, activities, and so on, that sometimes it's easy to forget to sit back and gaze at our beautiful girls, relish who they are today, and let go of the day to day struggles.

I still have to talk myself through negative reports, bad days, evaluation "scores" and the "why me's?" Why not me? I AM in this, and would dare to even admit that I am a better, more complete person because of it... but then I get overwhelmed again when I think of Avery and her life, and it's meaning and then I ask... "why her?" I wanted so much more for her. I still do.

A bittersweet revelation we have had in the past few weeks has come in the way of discovering what Avery "knows." Since she has so far been unable to communicate with us in any way, we generally meet her needs as if she were still a baby, and guess at what she wants to do, eat, drink, play, etc. With the help of several therapists and her respite care provider, Avery is LEARNING to communicate on her iPad. Over a year ago we downloaded a fancy program called proloquo to go, and we have finally reached a point where Avery can answer some yes/no questions, make choices on what she eats, does and watches, and even rule out what does and doesn't "hurt." A big one when you have a non verbal child. Avery is categorizing pictures, matching, identifying colors, letters, people and so on. NONE of it comes easy, and she has to be prompted and sitting at a table, BUT she is DOING THIS!!!! So this is all great news, right? Well, yes. It is. But for some reason, it also pained me incredibly to realize that Avery knows so much, and has so far in her life been totally trapped inside due to her disability. She has had no control over any aspect of her day, and now I learn that she has opinions!! It's overwhelming, wonderful and heartbreaking all at the same time.

So here I am, "hoping" again. Looking forward to a day when Avery gets better and better at figuring out how to communicate with us. Avery may never talk. I haven't given up completely, but I am realistic and know that she will always be disabled. But the past few weeks, despite the broken arm, smeared feces, hospital discrimination (that's a long story) spilled drinks, thrown food, negative reports, dented walls and so on... we have found a glimmer of hope in her new found skill. It's enough to push us onward, and snap us back to the reality that Avery's life has purpose. Meaning. That she is a child FIRST, who happens to have a disability ALSO.

So even though I wish I could erase many events of the past weeks... I still wouldn't wish this time away. It's a time for hope. A time for appreciation. And a time for inspiration. Something better will come of it. I just know it.

*Remember that we are walking on November 12th for Autism Speaks. Please feel free to join Avery's ARMY and walk with us, or donate to our team on behalf of Avery Grace. http://www.walknowforautismspeaks.org/dfw/averygrace