When Evie was first diagnosed with Autism, I went in search of an online community for parents of Autistic kids. What I found was a whole bunch of parents moaning about how Autism had ripped apart their, otherwise perfect, families. At first, I felt really sorry for them…and really lucky that I had an incredibly easy kid. I stayed quiet and listened but the more I read, the more I was convinced that the misery they were complaining about, was mostly of their own making.
I saw an unspoken competition play out where parents earned martyr points based on how their Autistic kids were screwing their lives up. I finally would chip in to the conversations with carefully worded suggestions about changing their thinking from a place of negative to a place of positive.
I was quickly lambasted and told that I was a bad mother. Because I didn’t fight, fight, fight Autism. Because our whole world didn’t revolve around therapies. Because I hadn’t tried xyz diet. Because I dared to think that Autism is not a death sentence or a tragedy.
I chose to isolate myself from those communities.
For the past fourish years, we’ve been doing our own thing. My only goal is to raise healthy and happy children. We build our life around that.
Evie is six years old. And when you’re six years old, and already going to school 5 days a week, your time after school and on weekends should be spent doing things that you love. So Evie does an adaptive swim program two days a week because she is actually part fish and is happy in the water. And all of the medical stuff that comes with Evie is scheduled during school hours as I do not encroach on her free time. Ever.
Evie is sensory seeking. I believe that is how she takes in information about the world around her and that she uses her senses to help cope when things are overwhelming. I don’t try to dissuade her from that which is instinctive to her. So that means if Evie wants to squish jello between her fingers and toes, that’s what she does. And I don’t worry about the mess. And if she wants to spend 10 minutes exploring a heating grate in the doctor’s office or the rubbery handle of the grill in her back yard, that’s what she does. And I don’t worry about being ten minutes late or the pile of dishes in the sink (although it would help if my husband would put the dishes in the dishwasher instead of the sink) .
When Evie flops to the ground, I don’t worry about getting her to her feet or making her stop flopping. I worry about answering the need that she or her body is trying to communicate. Her flopping is not an inconvenience to be dealt with. A behavior to fix. I am not a lazy mama who doesn’t set boundaries. I am the proud mama of a small human being who is worthy of my respect and honor. She deserves to be accommodated to have her needs met.
You will never hear the words, “I love Evie but…” come out of my mouth. There are no buts when you truly and unconditionally love your child. I don’t do a lot of things well, but I am very proud of the fact that I love every inch of both of my children. And I do that well.
I am not without parental stress. No parent is. I worry about Evie’s co-occurring conditions like her Epilepsy. I worry that she doesn’t have a sense of danger. I worry that she is over-scheduled. I worry about her when she leaves the protective cocoon that we have built for her and goes out into the world where she is not given unconditional respect as a person. I worry that she does not have a more sophisticated method of communicating as of yet. Evie does not stress me out. Dealing with other people about Evie does–and there are too many people to deal with and there is too much red tape to hack away.
But I would certainly lose at the parental martyr game. We are not living a tragedy. And would you believe it if I told you that I have an easier time parenting Evie than I do Maxine? Because that is true…and Maxine is not a hard kid to parent either. My marriage is not being ripped apart by Autism. I cannot actually remember ever having a single argument with Scott about Autism or Evie. Because we are united in our mutual love and respect for her and our unfaltering desire to raise happy and healthy children. Our time is not consumed by endless therapies as we have no desire to see Evie perform like a trained chimpanzee. Life is pretty good because we usually go with the flow.
100,000,000 parents would tell me that I am doing it all wrong. And I might listen if they seemed happy. If they seemed like they enjoyed their children. But the people that are telling me how wrong I am about every possible thing, are the same ones that are so caught up in the tragedy of Autism and the misery of their existences as parents of Autistic kids. No, I don’t have all the answers. And I’ve gotten more wrong than I’ve gotten right. But my kids are both happy. I’m happy. And at the end of the day, I know that I am getting the important things right.
So thanks, but no thanks, you can keep your copy of “How to Ensure that Autism Destroys Your Family.” We will write our own book.