By Js Kendrick
[Fair warning, this post today contains colorful metaphors – Bad Words]
It has taken me a little while to understand it, maybe accept is a better word. Yet for all intents and purposes I can’t escape it.
My daughter is autistic.
We were given this news at the end of this school year. After trying to figure out why she didn’t want to attend the last three weeks of school. She just refused to go, to our dismay and bewilderment.
After dealing with stomach issues since kindergarten we took her to the doctor only to be told that autism was a possibility. Stomach issues, it seems, is one of the tell-tale signs that someone may be autistic.
We did the assessment, are doing the therapy to work on her anxiety, have scheduled an appointment with the neurologist. Going through the gamut. Waiting to get the full diagnosis.
My daughter, Alexis, is 9 years old. She falls on the high-end of the Autistic spectrum. From what they can tell if the autistic spectrum was equated to a rainbow spectrum she would be an AM frequency. Aspergers is what it used to be called, a High Functioning Autistic. Probably why it took 9 years to figure it all out. That and 3rd grade.
3rd grade was hard on Alexis, she likes structure, things in their proper place. Routines. Yet 3rd grade was anything but. With three different teachers by the end of her first month of school and a child in her class with emotional issues, it became too much. The child with emotional issues threw a chair that whizzed by Alexis, and that was that. She refused to go back. She was done.
Honestly? I was pretty pissed at the kid, and the school. Still a tad pissed at the school since this wasn’t the first instance of that kid having a tantrum that resulted in throwing objects. However if it wasn’t for that incident I wouldn’t have found out. Literally a blessing in disguise.
Yet, and this is a big yet, I had always suspected ‘something’. I was confused by her behavior sometimes. She is intelligent, friendly, funny and loving. Alexis will look you in the eye and talk to you. She will hug you, talk to you, play with others just fine. But, well, sometimes. There were clues I never caught. Seems autism is an evil little tailor who never makes the same suit for anyone. Each case is as individual as the person it affects. Everything I had known up to that point about autism just didn’t fit Alexis.
Before 3rd grade, way before I knew what was going on, I had a child that baffled me. The “What in the fuck is wrong with you?!” child. I know it is a horrible thing to say, or even to think, but she would do things I could not fathom. Behavior that was just too unpredictable for me to comprehend. Getting upset at the silliest of things. Denying that she did something when I saw her do it. Laughing when something happened that would make most of us awkwardly silent or empathetic.
I convinced myself this was just a phase, even the teachers told me her silence in class was a phase she would grow out of. Alexis didn’t start speaking in school until 1st grade. Not talking in pre-k nor kindergarten classes. Even this past school year she whispered, didn’t speak at school. Well, not in the classroom. At public events nights at the school she would talk to everyone, even her teachers. They, like us, were baffled. We all assumed she was just shy in class.
Anxiety, that is what we thought, even what the school thought. It was only when we took her to the doctor over her stomach issues, constipation, that the doctor questioned her behaviour. She was acting below her age level. She recommended an evaluation.
That is when we found out. Denial became my friend, the little bastard is still lurking in my mind.
My child isn’t autistic, she’s just…
As the therapy moves along for her anxiety (actually the therapy is for me and my wife to learn how to deal with her anxiety/autism) and I do the reading, the research and the learning curve that is the steepest I have ever gone up I have come to a horrible conclusion.
I can’t even find the rabbit hole.
Like Alice, my daughter has found her own wonderland world. She sees our world through hers. In her wonderland world she is just fine, everything makes sense, has a purpose, it fits. But we, society, force her to live in ours. The two worlds are not always compatible.
My biggest issue with my daughters autism? I’m a Dad, and well, we dad’s fix shit. That is what we do. That is our ‘purpose’. Fix the problem.
Years ago my two older daughters lectured me. It was funny actually. They told me that I didn’t listen to them. I was actually confused, because I did, all the time. Yet I didn’t actually. I solved problems. I was being Dad. Fixing shit.
“Sometimes we don’t want you to solve our problems, but for you to just listen to us.” My second oldest said. So I had to learn. I still fix shit in my mind, but I keep my mouth shut.
I can’t fix this.
Autism is a wall, go over it or around it.
That is how I saw it initially. That is a fix it mentality. In truth it’s a rabbit hole. With tweedledee and tweedledum. The Cheshire cat and the White Rabbit. But the Mad Hatter lives there too, along with the Queen of Hearts. And the Hatter and Queen take great offense when my daughter tries to be in our world. Those two force her to stay in wonderland.
It angers me that she lives in this world, so close to ours but a world away. I worry. I have dealt with mean people in my life. I’ve been screamed at by my bosses. Had my heart broke by soulless people. Had people I trusted turn on me.
Haven’t we all?
So in 10 years when her life will really begin, how will she cope? How will she deal with the mean boss? The shitty boyfriend? The back stabbing friend? It was hard enough on my older two. How will someone who has difficulty telling when a person is happy or sad deal with that? Facial Emotional recognition is an issue with Alexis, as with others who have autism. Our facial expressions become a jigsaw puzzle to her, she has trouble understanding our emotions. Hard to convince your daughter you are not happy with her behaviour when she sees my face as ‘joking/playing’ and not pissed.
I know, no really I do, that autism isn’t a death sentence. It isn’t the end of her life. I know kids and their parents that have gone through so much more, real tragedies.
This is not that. Yet I am selfish. This is my baby girl, I worry, I fret, I cry. I can not just fix this. I struggle with that. Trying to fix it. Because I’m a dad, dads fix shit.
I know in time, with therapy, with patience and acceptance that we can give her the skills she will need to enjoy her life. So now I deal with 2 little girls in one. Alexis and Autistic Alexis. They are the same person. I know that, I just haven’t accepted it. Working on it.
Then of course, there is that damn rabbit hole.
I also know that somehow, someway I need to find the rabbit hole. I can’t follow, but maybe, just maybe, I can hand her a pair of glasses to look at my world. To help her focus in on it a little better. If I can’t fix this, then maybe I can find a way to listen better to understand her way of seeing our world and eventually help her see our world better.