I never thought I’d be fundraising for an autism service dog. Adopting a shelter dog, maybe breeding purebreds one day.
That was until we heard the doctor tell us about two years ago, right before our daughter’s third birthday, that our Evie had autism. We knew things were different with Evie shortly after her first birthday. She went from an interactive, bubbly, giggly, attention-seeking little girl to a quiet, non-expressive, recluse over the course of a few weeks.
At first, I thought she caught a bug. It was winter and all kinds of bugs go around during winter time. I remember her doing strange things. Pushing her head into the ground in a way that made me think she was in pain. Looking straight through me, as though I wasn’t in the room. She stopped talking. At 12 months old she was saying things like, “Give baby bottle.” She was very impressive developmentally, really. She met all her milestones on time or early. “It has to be a bug. She must not feel well.” Oh, the excuses I made.
I’d see glimpses of the “old” Evie, and I’d think, “No, she’s fine. We’ve been through a lot of change — a big move, a new baby.” I thought maybe it was me. Maybe I wasn’t giving her enough attention. I had a three-year old, a one-year old and a newborn and absolutely no family or friends around to offer a break.
As time marched on, I knew something was different. I did what I do best. Research. I scoured Google. I hit upon autism. I didn’t have a clue what autism was. So I did more research. I remember reading the medical journals online. Catastrophic. That was how it was described. A catastrophic neurological disorder. I thought I was going to throw up. I stared at the screen for a long time, shaking. I grieved, thinking my sweet little Evie had been taken from me by this horrible catastrophic neurological disorder. I cried and cried and cried for months. Not the sniffly, silent crying. I mean the sobbing-until-I-could-hardly-breathe kind of crying.
I made the appointment with her pediatrician. He told me there was absolutely no way she was autistic. Developmentally she met all her milestones well within in the normal range. I wanted to believe he was right. I left trying to tell myself I was worrying for nothing. But things just did not seem … typical. I went back to the pediatrician. He declared again that I was overreacting to normal toddler behavior. I wouldn’t leave. I told him I wasn’t leaving until he gave me a referral to a developmental pediatrician. I remember how angry he was. How he slammed the door as he walked out and came back glaring and handing me a referral. I remember how my heart pounded and my hands shook as I took the piece of paper.
We waited months for the appointments. We drove hours to endure emotionally-exhausting evaluations. Then, a few days before our daughter’s third birthday, we sat in a little white room while the developmental pediatrician told us, “Evie is autistic.”
Funnily enough, my world did not come crashing down. I already knew. If she had told us anything different, I would have known she was wrong and sought out another doctor somewhere else. I’m thankful to that doctor. She told us that there is no way to know Evie’s prognosis. Good, bad, indifferent. She told us about all the different therapies out there. She told us to try what made sense to us and stick with what helped Evie most.
Looking on, two years wiser, I see Evie. I see how sweet and loving she is. I giggle with her when she thinks one of the lines from Super Why is the funniest thing ever. I love her bear hugs. I love that she sees everything in an instant. I marvel at how she can focus at the minute detail of a lady bug crawling on a flower petal. I wonder what she thinks about when she gazes at the sky. I sigh and half-chuckle when I remember back to a time that I thought her autistic-ness was a catastrophic death sentence. That mourning took a toll on me. And, in my opinion, was completely unnecessary. Evie is amazing. Exactly how she is. Her autism is a part of her. She has a memory unparalleled to anyone I have ever met. It makes her different, not less. She has such sweetness to her. She is so loving and kind. I love seeing her eyes light up when one of her siblings tries to tickle her. I am overjoyed to see her look at her siblings when one tries to get her attention and show her something neat. I have met the most amazing people because of Evie’s diagnosis. People who have devoted their lives to helping those with neurological differences. And, in some cases, to my shame, people I would have been afraid to reach out to before autism entered my life. Evie has added such richness to our lives.
So what does any of this have to do with fundraising for an autism service dog?
I see how much growth Evie has undergone in the last two years. We’ve tried many different therapies — some I regret trying, some I love. What it boils down to, for me, for Evie, for our family, is that autism is a neurological difference. Evie’s sensory system experiences the world differently than I do. Where I have a reasonably strong sense of where my body is in the space around me, that might not always be so certain for Evie. Where I understand the concept of danger, Evie does not. Where my sensory system is able to regulate on its own, Evie may need deep pressure to calm her or wake her system up.
A service dog, specially trained, could assist Evie in so many of these struggles. And, as her mom, I’m hoping the dog also serves as a bridge for Evie to meet others. I’m hoping that folks stop and approach her and say, “Hey, I like your dog.” I hope these interactions will build upon each other and one day Evie will be able to say, “Hey, thanks.”
I see the challenges Evie has to face. A world not ready for neurological diversity. A society that doesn’t understand how greatly autism’s neurology affects the sensory system. A culture that can be afraid to approach those who appear so very different, but in reality crave the same things all human beings want — love, acceptance, community, belonging. It is my hope that through it all — the good and the bad — Evie has a service dog by her side to assist her in the many things the neurotypical world takes for granted and to be with her through daily challenges we face whether neurotypical or not.
I write this simply as a recollection. If you are reading it, I appreciate that you took the time. If you feel so inclined, please donate. We greatly appreciate every single cent we have received in our effort to fundraise for a dog for Evie.
http://www.firstgiving.com/fundraiser/adog4evie/donations
https://www.facebook.com/ADog4Evie/
http://4pawsforability.org/evie-castle/
C.S. Castle 