I just put Tatum, my 8 year old daughter to bed. I'm sad to see her drift off to sleep. This is quite a change from 6 months ago when I would drop into bed exhausted, only to spend most of the night pseudo-sleeping but mostly watching the video monitor (purchased from a local baby store) that was attached to the camera in Tatum's room (other parents of autistic children will identify with this).
It has been an especially Good Friday this year and not for just the religious reasons. I'm getting to know my daughter Tatum in whole new ways. It's an amazing journey filled with simple, everyday moments.
Tatum is autistic. She is highly intelligent. She is near constant motion. Like others on the spectrum, she came with very little need for sleep. I have had an interesting journey as an adult. Nothing has been as challenging as being Tatum's mother.
I made the decision to homeschool Tatum for the 2008-2009 school year. I saw the intense agitation and anxiety melt away, but every day life was still challenging and full of melt-downs.
In November I pursued biomedical treatment for Tatum through the local Autism Solution Center. Blood draws, allergy testing, colon cleansing, stool samples, and major dietary changes have become part of our journey. What I have learned is that there is a reason that Tatum has a hard time making it through any given day-her body is not working well. A lot of stuff is out of sync. But we have a plan now. I have hope that our life will not be tied to neurology visits, EEGs, and increasing amounts of medications.
January 1, 2009, we started the major dietary changes and supplements. I saw my daughter's food cravings disappear (she was the typcial GFCF kid looking for her next fix...shoving fistfuls of shredded cheese in her mouth faster than I could get the refrigerator door shut). She began to eat a wider variety of foods, including meat and veggies. She still misses pizza, but she has an amazingly sweet disposition about all of this change.
This past week, I have seen dramatic changes in her fine motor skills. I have also watched my daughter climb, run, and navigate a playground with no fear or anxiety (a major feat for a kiddo with sensory integration issues-in the above pic, she and Kelly are walking across a broken bridge-this previously would have led to such a high level of anxiety that our hike would have been over, but now it's hardly noticed by her). Her hair texture is changing. Her body is relaxing-she isn't walking around in fight or flight mode anymore.
Sitting at dinner last night with a good friend, I searched for the words to describe a recent outing to my older daughter's drama performance. My friend found the perfect word to describe it: "normal." This incredible experience was made so extraordinary by being completely ordinary...parents all around me were experiencing the same thing, but I was probably the only one celebrating it.
Tatum did not argue with leaving home to attend the performance. We talked in the car on the way to the performance. She did not have any difficulty sitting through the performance. She watched the play and laughed at appropriate times. When it was over, she clapped and ran off to find her sister. I collected both of them and climbed in our car and drove home. Once home, we re-engaged our day's activities without an issue. Normal. Just completely ordinary.
Throughout the whole drama performance, I never once was on high alert for things that might set Tatum off. I did not have to entertain her to try and keep her engaged. I did not have to find ways to work off all of her extra energy. I did not have to have a death grip on her hand in the parking lot to keep her safe. I was able to fully enjoy my daughter Kelly's play.
I am watching her tease and joke with me, her sister, and friends. I am seeing so many circles of communication between her and others that I'm amazed. She's seeking out hugs and touch. She likes to climb up in my lap (which is becoming more difficult as she is growing like a weed).
But it's deceptive. Having done the "normal" route with my easy going Kelly, Tatum's improvements almost sneak by me. Then I will realize how easy a transition was compared to the on the floor meltdowns. I'll observe Tatum upset that no one will play a game with her and remember the girl that only wanted to spend hours in her closet lining up her Little People or Magnetix pieces.
So our bedtime is simple. She has a bath. She puts on her pajamas. She brushes her teeth. She fills her cup of water. We read a story together. I tuck her in. Hugs and kisses. And then she drifts off to sleep. The video monitor has been put up on a shelf. I sleep.
Nothing unique about it. In Tatum's short life, we should have had nearly 3,000 of the same, ordinary bedtimes. We're up to 30, and I'm loving every minute of our normal life.
