Some of me wants to kick and scream at this new normal. Autism is not what I had planned for my life. Nor is it really what I had planned for my daughter’s life. With every odd behavior that surfaced, I slightly wondered if “that A word” was what was looking me in the face each day, but thought surely not, never me. I suppose that’s what every parent of an autistic child thinks.
I’ll never forget that day when I took Little E for a psych eval at our local Regional Center. The psychologist and I did a bit of a dance. He would ask questions and assert that possibly she fit in the box. I would promptly refuse that she belonged in the box and would take her back out. Back and forth we went as he did his assessment. By the end of the dance, we reached a middle ground in which we both felt comfortable. Since she had bloomed so much since being in our family, he would give her a provisional autism diagnosis with the agreement that she would be assessed again in the future so we could figure out which box to settle her in. God knew what He was doing. He knew I wasn’t ready to own “that A word” yet.**
You see, looking back now, I realize that Little E was merely a shell of a person when we brought her home. Not a toddler like we expected. She was barely on par with an infant. She was simply a shell. Looking back through the lens of autism, at our visits with her in the orphanage, it was lurking even then. We just didn’t have a clue what we were seeing. It strikes me as similar to when my oldest daughter got her first pair of glasses. She had no idea the things she wasn’t seeing until her new lenses revealed them. The new lenses opened a whole new view.
Since that dancing day, I (really we–it’s a whole family thing) have continued on this journey to discover who Little E really is. Who does God have in mind for her to be? What is her fullest potential and how can I help her achieve it? Yet, on this road I didn’t plan on taking, full of therapy after therapy and one intervention service after another, I have had to grieve on many different levels. Grieving the future–who I thought my daughter might be. Grieving the past because I wish things could have been different for her. As much as I adore being her Mama and am thankful for this opportunity to raise her, I love her enough to say that there’s a part of me that wishes circumstances could have been different for her birth mother that would have allowed her to raise Little E. She’s missing out on so much. And I have grieved the present because I have had to relinquish all control. Any sense of pride I may have had about having this parenting thing in the bag…gone. I am completely humbled by my Little E. Every.Single.Day. Autism changes daily. It’s like someone shaking a snow globe. Just when the snow settles enough to get a clear picture of the scene, it gets shaken up again. I am standing, with everything I know about parenting, smack in the middle of that snow globe, blizzard blowing and I am waiting for the snow to settle so I can make some sense out of all this.
A few months ago, one of my friends on F*cebook, posted this simple status update that changed my perspective.
Who knows what that meant to her, but that simple statement said to me that I needed to stop viewing my life as being hijacked by autism and the characteristics that come with it. I needed to stop living in denial. I needed to stop trying to kick the doors open that were meant to be closed. I simply needed to stop resisting this unplanned road and to simply receive it–past, present and future. Simply put, I needed to learn how to embrace it. The more I learn how to embrace it, the more I am able to make sense out of this new road and to navigate it. Truly, it’s a hard road. Some days I feel like I’m 4-wheeling, some find me stuck and others I’m a bit car sick, but if I just push the hijacked feeling out the window, take the wheel and hold on the for the ride on this new road that He had planned all along, it seems a bit smoother. Not easier, just smoother.
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**You’ll notice that I use the term autism and autistic characteristics interchangeably. I should clarify that after much research and consulting with a few professionals, we believe that Little E has something called Institutional Autism. It’s not as well known, but there is research to back it. The short of it is that living in an institution is what created these autistic characteristics in Little E. That’s the bad news. The good news is that because of the explosive change in her since we’ve been home and with continued intervention, there is hope that some day she may no longer be on the autism spectrum. She’s still got a long way to go, but there is hope with each small victory. So we pursue intervention services while she is on the spectrum in hopes that one day she will no longer need them. Will you join me in praying this hope over her?
When we heard the dreaded “A” word, when our bio son was 5, I cried. I mourned. I couldn’t imagine his future. He is 15 now. He’s amazing!
Our daughter, adopted from Russia, has institutional autism. At 3.5, she was developmentally assessed at somewhere between 15 and 18 months. She is 7 now. She has Fetal Alcohol Syndrome as well. She is doing incredibly well. She can read (we were told she wouldn’t be reading until age 12 or 13, if ever). She can do math. She can write words.
I have been researching brain development for 10 years as a hobby, trying to find things that will help my children. There are so many things that can be done to help them. There is hope.
I understand how it feels to look face to face with the fear of the unknown in the diagnosis of autism; I just want to tell you that there is healing and hope. God is good!
Beautifully put! We love all of you!