Avery Grace

Avery Grace

Friday, July 25, 2008

Easy Silence: EEG

There is a huge misconception that all children with Autism behave in certain
ways. Autism itself is not a disorder defined by behaviors, but by real neurological deficits. Sure, several kids spin in circles, some may line things up, others may or may not have good eye contact, some may scream or some may bang their heads, some may talk your ears off, others not a word.... etc, etc. However, none of these things exist across the board. Just like their typical peers, no two kids with Autism are exactly the same.
When we arrived at the sleep institute this morning for Avery's EEG appointment, the tech heard the words "autism" and quickly moved us from our initial room at the front, to a room at the end of the hall, assuming Avery would pitch a fit at the 26 electrodes being stuck to her head, or at having to sit still or whatever. He couldn't have been more wrong. Avery is not the "over-reactive" type, rather, she is hardly ever phased by much of anything. Believe me, I have tried. I could scream at the top of my lungs, and she may or may not glance at me to see what the heck is wrong. In fact, when her favorite shows are on TV, I am pretty sure the house could burn down and she may not notice. But enough about that! So, back to the EEG... our little trooper did GREAT!!!! She was still on the bed the whole time he worked on her head, and when it was time to go to sleep... (though it took me forever) she didn't make a peep. She was her awesome, happy, loving self. I am pretty sure she did better than most any typical kid would. Can't say that often... so I must say we were/are incredibly proud of her. I have attached some pictures so you can see for yourselves!
There is a song by the Dixie Chicks called "Easy Silence." I heard it the other day and couldn't help but think of our quiet little bug.

"When the calls and conversations
Accidents and accusations
Messages and mis-perceptions
Paralyze my mind

And I come to find a refuge
In the easy silence that you make for me
It's okay when there's nothing more to say to me

And the peaceful quiet you create for me
And the way you keep the world at bay for me

The way you keep the world at bay for me."

Avery may be quiet and hard to reach... but her demeanor is so peaceful, so happy, so content. We have moments where I really feel like we connect... though they are few and far between. So, she provides me/us with an "Easy Silence." I am pretty sure that when she is ready, and when we feel like we just can't wait any longer, her silence will break, and I can't wait to hear what she has to say.

Tuesday, July 15, 2008

Thoughts of Today.

How do you separate your child's successes and failures from your own? Our children become so much a part of us, it is like your heart is beating in their little bodies. Is this codependency? I guess so. But as a parent, I don't know how to do it any other way. The love and passion is so strong, so constant, so all consuming. But it is crucial that I learn how to have a good day, even if my daughter has a bad day. It is important that I learn how NOT to depend on her success for my own personal fulfillment. If I don't figure this out soon... my spiraling depression could get out of control. Avery is in what I guess is her second regression. When the neurologist first examined her a few months ago, he said "Well I would say Autism, but she doesn't have the sensory deficits, so I guess PDD-NOS" (a less severe Autism Spectrum Disorder.) But now, a few months later, she is TOTALLY having sensory issues. She needs tactile input ALL THE TIME on her feet and hands, is squealing and walking around in circles more often. So the hits just keep on coming. I try and try not to focus on "what the hell happened," because I really don't know if we will ever know. Was it the 16 rounds of antibiotics in 10 months? Was it the vaccination overload on an already weakened immune system? Was it something she started eating? It was CERTAINLY something. One year ago this week her Early Childhood Intervention team first evaluated her for what was then considered a very mild language delay. She only had about 10-15 words, and was using gestures and signs to communicate. Now, she has virtually no words, and also stopped using signs and gestures. Occasionally she points at something when prompted, but otherwise would go hungry, thirsty, and unchanged if we weren't on top of her needs. It's enough to drive a mother half crazy. Especially when I am the one staying home, scheduling countless therapies, and watching her child struggle to learn the most basic of human functions/relations. But on the flip side, I can't imagine if I couldn't be here to participate in her remediation. I am way too controlling to let someone else be responsible for helping my daughter get better. :) What I need and want to do is be grateful, instead of being so sad all the time. After all, Avery is VERY happy, loving to me and Bryan, and easy to be around. I want to enjoy my precious and beautiful daughters, and work towards some sort of acceptance for that which I cannot control. My friend and parents suggested the serenity prayer. It's a good idea. So with that, some personal counseling, this outlet to journal, and maybe some medication :), surly my outlook WILL get better. For now though, I guess I still need to grieve. In many ways I have lost the daughter I once had, and I have to let her go. I need to find ways to connect with who she is now, and continue to help her learn how to connect with me. I need to really let myself bond with both of my daughters, and stop letting my fear of losing them inhibit the utter joy I know that they bring to my life. All we ever want is the best for our families. This is the hand I was dealt, and I intend on playing it as smart as I can. I can't promise there won't be sweat, tears, anger, resentment and fear, but I can try to overcome those demons to embrace the light in my life... which is absolutely my phenomenal family. Perfect in many ways, just as they are.

Wednesday, July 9, 2008

Home again!

We survived our first trip with two kids! On Friday July 4th Bryan and I flew to Atlanta with the girls and enjoyed the holiday with family and friends. Avery even loved the fireworks! It was a nice break from reality as we were just able to be a family, not a family with 10+ appointments a week for our two year to help her get better... I am pretty certain she enjoyed the break as well. My mom threw a party to celebrate Kaylee, so it was nice to see friends and show off our precious babies. We also spent lots of time at the pool and even made a trip to the Georgia Aquarium. Now we are home again, and back to reality... but it's nice to escape every once and a while and just hang out. I will attempt to post some pictures from our trip!

Wednesday, July 2, 2008

What a difference a year makes.

This is my first entry. I have never blogged before, nor do I really know how. I do know why I am doing this... I figure it is an easy way to journal. I see it as therapeutic.
One year ago we were a blessed family of three. We were traveling in Arizona and California, without too many cares besides the usual. My sweet and adorable 15 month old, Avery Grace, was just starting to talk, was playing peek-a-boo, waving bye bye, blowing kisses, etc etc. She is still sweet and adorable by the way. It's just that now, she has Autism. Then, I am certain, she did not. Wow, how life changes. In the meantime, she lost her ways of communicating, (signing, vocalizing imitating and gesturing). She remains, thank god, happy and delightful to be around. One year later, we are a blessed family of four, as Kaylin Joy has joined this world. Our days are filled with therapy, as we fight to get our daughter back. Our nights have become more sleepless, as we worry and are awakened by not one, but two lovely daughters. In the past year we have endured countless doctor's visits, a grim diagnosis of systemic mastocytosis, followed by a dreadful diagnosis of PDD-NOS (Autism.) We have feared for Avery's life as we awaited test results, and cried tears of joy at the smallest of feats, such as Avery saying mama or dada, only to lose those words again later. Parenthood, I think it's safe to say, is kicking our butts, but we still wouldn't trade it for anything in the world. So for my first blog... I just want to scream out loud... but I'll save it for the pillow. I am so grateful for my sweet family, and I want to use this outlet to post successes, challenges, heartaches and triumphs.