human psychology, is a person's assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit. In the world of Autism, acceptance can sometimes be frowned upon. Some parents might view acceptance as "giving up," or losing hope that Autism is treatable. There are lots of opinions out there, and to me, though many symptoms of Autism are "treatable" in many kids, for the most part, the core deficits that define Autism are often life long, especially for a kid as severe as Avery. That's not to say that a kid won't benefit from intervention, be it therapy, diet, medications and so on. But for me, in order to live some resemblance of a "normal" life, I have to work towards accepting Avery, which includes her abilities and disabilities, just as they are. And to love her, just as she it. Today. At this moment.
I'm not there yet. The whirlwind of being an Autism momma shakes you to the core. I have moved from hoping and praying Avery would "catch up" to realizing the reality of her disabilty is such that she will likely always need constant care and supervision. I started out reading stories of amazing progress and hope. I would call mom's I knew whose kids ended up verbal, potty trained, and even mainstreamed in school. Now I can't read those stories at all without the constant ache of "why them not us" tugging at my heartstrings. Heaven knows we have been giving this our all. Yet, as most of you know, our "progress" is painstakingly slow, often with one step forward two steps back. She is still not the slightest bit verbal. She cannot feed herself. She is not toilet trained. She does not understand how to follow directions or stay safe. And at age 6, we are now very aware that (for us), Autism isn't going anywhere.
There wasn't a moment when I KNEW that Avery had Autism. It was a gradual awareness, just as it has been as year by year, we are gradually more aware of just how much Autism impacts her brain, our family, our finances and even our relationships with just about everyone. I can't pinpoint a moment when I was brought to my knees with sadness, but I can say I have thousands of sad moments. Thankfully, I have many more happy moments. My emotions about Avery are so complicated and tend to flip flop all of the time. I HATE what Autism has taken away from my daughter and my family. I FEAR so many uncertainties about her future, our future, her health and simple safety. I wish I could "wish"Autism away. I even wish we had a different variety of Autism. Autism is as varied as any disease, and unfortunately, ours is one rotten case. I lay awake at night worried about things no parent should have to... but then I take a deep breath and try to refocus my perspective. I try to remember that within the Autism, is a precious little girl. My precious little girl. So though I can't say that I am at a place where I 100% accept "Autism," I can say that I 100% accept Avery. I accept her to be an AWESOME kid. Not that all kids aren't awesome, but her awesomeness is a little bit different, and I can tell you that at THIS moment, the best thing I can do for me and my family is accept that.
Avery may not speak, but she shows us she loves us through touch, affection, and approach. She loves to be held and hugged, and is generally VERY happy and easy going. See... awesome, right? Avery is very content. She is happy to be where ever she is, and as long as she has her beloved ipad, she is a go with the flow little trooper. We often take our three girls out, and though in many ways Avery is "hard" (due to wandering, not understanding directions, grabbing/spilling food etc) in many OTHER ways she is our easiest child. She hardly protests. She doesn't whine. She willingly holds our hand and loves to watch the world around her. She is awesome. Do I wish she could "do more?" Absolutely. I wanted more for her. I can't imagine what it must be like to be trapped inside your body having others manipulate your every move and try to identify your every thought. But that is MY issue. SHE is happy. She is perfect just as she is. She teaches others patience, and unconditional love. She really is awesome. So as I strive to move towards "acceptance" I also strive to remember that at this moment, even if I have a hard time accepting all the ramifications of having a child with a lifelong disability, I can handle this. I have three precious little blessings, one of whom is helping me realize every moment of every day that perfection and normalcy are overrated. In so many ways our life is so hard, but it is also awesome. And as long as I get to live and breathe it, I remain up for the journey and willing to fight hard to enjoy the ride, and to help sweet Avery be all she can be. No matter how "limited" she is, if you know her, then you know she is one awesome kid. For now, I can accept that. If you know Avery, I hope you will try to accept that too.
Thank you for the blog! I do love our precious Avery just as she is and will alway pray for more for her! Love you! Mom
Dad and I enjoyed your blog! We think Avery is awesome also! Your writing is special to us!
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