Avery Grace

Avery Grace

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


Anonymous said...

Hi Jenny -

You never cease to amaze me with your thoughtful and wise words. You are exactly correct = Avery and the other autistic children deserve the best. Avery is fortunate to have such wodner and caring parents. Not all parents are like this.

You and family will continue to be in our thoughts and prayers. Above all, never, never, never give up.

Much Love

Grandpa Beeson (the luckiest grandpa in the universe)

the family of mannchester estate said...

Sorry to leave this in the comments...but hopefully you will understand. Our daughter (2) has a disorder called neurofibromatosis and we are awaiting the most likely diagnoses of mastocytosis. Somehow even though both of these disorders have been linked to higher incidences of autism spectrum disorders we have not seen any signs thus far.
Anyway, I can find very little on masto and have attempted to interact with other parents but have not been successful. I am looking for someone (anyone) to answer my questions that are more personal than medical. If you are willing that would be great!

Thanks for your time,