Avery Grace

Avery Grace

Sunday, October 31, 2010

Blissful ignorance

If someone had told me when Avery was first diagnosed with Autism that she would still be non-verbal at 4 and a half I wouldn't have believed them. After all, before this all happened, she HAD words. She HAD gestures and social skills.... I was CERTAIN that it was just a matter of time before they came back. Boy was I wrong.

I remember struggling when I would see neuro-typical kids doing cute and normal things, responding to their environment, to their parents, and participating in daily activities. My heart would just sink. I was sharing that with my dad at the time and he advised me to stop comparing... and if I had to compare, to compare her to other children with Autism... because he, like me, assumed she was high functioning, and only mildly impacted. In fact, when we first went to the neurologist and the developmental pediatrician, they were both reluctant to diagnose her... then by the follow up visits they both said "PDD_NOS" or mild Autism. Now we have a "moderate to severe" case. So we were gradually eased into this world of disability. And even though we have ALOT of therapy and routines in place, at times I still feel like I am drowning. Some mornings I still wake up and can't believe that our life has turned out the way it has. I can't believe that after the tens of thousands of dollars spent, prayers said, and therapies tried... that she is where she is. It is mind boggling.

I have written time and time again about finding the silver lining, about focusing on the positive, about altering the way we think and perceive our situation and about the beauty of disability and the light I STILL see in my beautiful daughter's eyes. And I still stand by those posts... but it's also important to share that even when things don't necessarily "get better" that we are still able to march onward. To find happiness and hope within the precious moments even when the whole thing seems agonizing and unfair.

I wish that I could tell you that I have figured out how to completely let go of the "what if's" and the "why me's." I haven't. It still sucks, and as my sweet non-verbal four year old gets older and bigger, I fear that our challenges will only get more difficult and complicated. I guess I am glad that I didn't know where we would be today when she was first diagnosed with Autism. And the truth is, I don't really want to know where we will be four years from now. Having hope and optimism is part of what keeps me going. I can appreciate the smiles, occasional gazes, happy sounds and simple attempts to communicate. Things could always be or get worse... but thankfully we have an army of supporters to lift us up when times are hard. To remind us that we are loved, and I know that we are.

The lessons I continue to learn about myself, about the love and generosity of others, about the strength of a heart and the importance of compassion and endurance are what enable me to keep getting up day after day and working hard to help my daughter. I accept that she has Autism, but I haven't and won't give up on her. I once heard a mom say that if all her son could learn to do was ride a bike, then she would help him be the best bike rider he could possibly be. That's how I feel about my sweet Avery Grace... whatever she can do, I want to help her do it as well as she can. Whether she ever talks or not.... I will figure it out, and I will empower her to be all that she can be. I will make sure her voice is heard... even if you never hear a sound.

Saturday, October 2, 2010

Walking Again...

For the first time last November, I decided to invite some friends and family to walk with us in the Dallas/Ft. Worth "Autism Speaks" walk. We were able to raise some money for something of vast personal significance to us, but more importantly, we were astounded beyond words at the loving support of our dear friends and loved ones who took time away from their own busy lives and agendas to come help us BE Avery's voice.

Autism can take on many different faces. For some kids, the disorder is mild, and even hard to distinguish with enough time and therapy. For others, like Avery, the disorder seems to take over. Impacting every moment of our every day.

Avery is very disconnected and almost always completely in her own world. She has trouble with every aspect of development, from large and fine motor skills, to body awareness, to even the most simplistic forms of communication. Climbing stairs, using utensils, walking with coordination, and imitating even the most simple sign are very very challenging for our precious four year old. She (and we) work tirelessly to join in her world and to help her find her way in ours. We won't give up. And we will continue to be her backbone, her hand to hold, and perhaps most importantly, her voice, until she can find her own.

So this year, again, we will walk for her. To support and encourage her on her journey. She didn't ask for this, and she deserves more.

Avery deserves words of support and encouragement even though she can's speak them. Avery deserves attention even though she often can't seek it out. Avery deserves personal rights and advocacy even if she doesn't know it, and Avery deserves compassion, love and awareness... lessons she teaches us everyday in her own unique and special way.

She deserves more.

When I read words like "every 20 minutes another child is diagnosed with Autism" my heart sinks. I literally feel a lump in my throat and a pulling at my heart. When we heard those words, though we already knew it, we became different people. In that instant.

She deserves more.

As we drive her to school at the crack of dawn, then onward to therapy every afternoon and even on Saturdays...

She deserves more.

As we dispense countless medications, supplements, spend hours in a hyperbaric oxygen treatment chamber, search for diapers large enough to fit her, and time and time again help her remember simple tasks like not throwing her sippy cup and trying to use a fork.

She deserves more.

As we long to connect with her. Wait for her to look us in the eye. Make attempt after attempt after attempt to "play" with her, and one day... maybe one day, hear her words again.

She deserves more.

She deserves to be heard. To be understood. To have the same benefits and rights that healthy kids have. To have fun. To connect with us. To share with us.

So I invite you to check out our team page on the Autism Speaks website. I am going to walk for her. It is so simple, just a short walk, but at least it gives me one more thing I can do for her. To do right by her. It gives you all something too. Even if all you do is look at her team page, and remember how devastating it can be to lose your child into this neurological disorder...it gives you knowledge. So next time you see a little kid having a tantrum, not following directions, not responding, wearing diapers though he seems to old, or not looking or talking to you... you will remember. Remember Avery. She deserves that.

Autism Awareness is why I will walk. Avery deserves it.

Please visit www.walknowforautismspeaks.org/dfw/averysarmy or click here