Worry: My Constant Companion
I was at dinner with some friends over the holiday. We were doing the normal chat, talking about our lives, our Christmas plans, our husbands and our kids. One friend asked me how Oliver is doing. I said he’s doing great. She followed up with a question that surprised me a little. She asked, “So, is the therapy curing him?” This may seem like a simple question for most people. For me, it feels mean. I choose not to be offended or insulted though. She, like most people, view autism as a disorder that needs curing. I responded that best way I could think of, especially because this particular friend is currently exploring the possibility that her son may be autistic as well. I told her that the therapy isn’t a cure for autism. He will always be autistic. It’s not a disorder/disease. It’s the way his brain operates. So, yes, he’s doing great. But I suppose I’ve always thought he’s doing great. I left it at that.
This conversation caused me to think a lot about my kids and how the therapy is impacting their lives. This line of thinking is a regular occurrence for me. Anyone who knows me well is aware of the fact that I can dwell on little choices I make about my kids for extended periods of time. I project 20 years forward and try to picture how the decisions I make today will change the trajectory of their lives. Of course, it’s a fruitless exercise. Anyway, I was deep in thought about ABA therapy when someone reached out to me about it. She sent many articles about the permanent impacts of ABA. She pointed out some real concerns that happen to be concerns that I share. I read through everything she sent and prepared for my upcoming meeting with Oliver’s team. As it turned out, the director of Utah from the company that is providing our services was coming to my house that very day. I would have a chance to talk through my thoughts before I head into this inevitable black abyss of worry that I’m being a bad parent. Funny how the timing worked out that way.
When she arrived, I dove right into my concerns that she is very much familiar with at this point. I told her I’m worried about teaching him to hide his emotions rather than process them, about working him too hard, about him learning that there is only one right way to do things which isn’t his way, about Max feeling like his needs are not as important as Oliver, about him learning blind compliance to authority figures, about him feeling like the only way to be successful is to conform to an image that we design, among other things. She listened to me, as she does every time, with understanding and compassion in her eyes. We walked through all of his programs, like we always do, as I sorted through my thoughts about it all. We evaluated his hours and talked through his school schedule. She told me again that if change is needed that I can call her anytime and they will be put in place right away. Of course, I already knew that seeing as how I’ve called for changes many times. I walked away feeling grateful for her, for the team we have and especially for this woman that took the time to send me her thoughts. I’ve never felt more confident in the choices I’m making for my family. I’m sure a fleeting feeling, but at least it exists today.
The truth of the matter is Oliver doesn’t need to change anything about who he is to have a successful, happy life. Unfortunately, there’s another truth that has to be acknowledged. Society isn’t designed for autistic people although it is getting better. Schools have sensory activities worked into the curriculum, there are teachers that specialize in helping kids that learn differently, even Vivint Smart Home Arena (still the Delta Center to me) has a sensory room! These things help, but they aren’t enough. School is set up for kids to come in with a certain level of vocabulary, basic skills for following directions, the ability to learn in a group setting and to understand what’s being asked of you. These are the exact skills that are developing much more slowly than what any public school can accommodate. That is where the ABA therapy comes in. Basically, the strategy that I have insisted upon is building confidence in himself paired with understanding the society that we live in. It’s ok to feel sad/angry. You can cry, scream, punch a pillow, go to your room, say how you feel, walk away, ask for a treat, get a hug and countless other things, but it’s not ok to hurt yourself or others. The focus of the therapy is not about making the one correct choice and baiting him into making it. It’s about teaching him to generate his own solutions while steering him away from the ones that are detrimental to him and others. It’s ok to explore a new environment, but it’s not ok to wander to where mom can’t see you. It’s ok to be fearless, but it’s not ok to run into the street or jump into a pool alone. It’s ok to be different and learning to stand up for yourself goes along with that. You don’t have to change your interests to make friends, but you do have to be kind and listen to others. You also don’t need to be friends with everyone, your real friends will accept you. You don’t need to give up on your fascinations, but you do need to recognize/cope with situations that don’t accommodate them. (https://www.bluemomredstate.com/blog/autism-hurts) It’s ok to need help, but you need to learn to do things on your own. As I write this down it makes me realize that these lessons aren’t reserved for people who are not neurotypical. Every child has to learn about how to function in society. Every person experiences positive and negative things on their journey to adulthood. I can’t prevent pain from touching my kids. I figure the best thing I can do is equip them with a strong moral compass, teach them the importance of setting boundaries and model strategies for dealing with pain. The therapists help me do this by reading books to the kids, watching videos followed by asking questions, playing games that require turn taking, creating problem solving boards to help support emotional processing, making visual schedules to help the kids know what to expect, bringing sensory toys to help alleviate anxiety, making flashcards to help improve vocabulary and spending time with me to talk through any concerns that I have. The consultant meets with the teachers at the school to come up with plans to support his specific learning style. They provide a weighted blanket for him when he has to sit and listen. They keep a dinosaur card on the board at school to let Oliver know when it’s dinosaur time. The teachers now make time during the day for all the kids to pretend to be dinosaurs. The school speech therapist, private speech therapist and occupational therapist all use dinosaurs and Godzilla to help him along. At the end of the day, one of the reasons the therapy has been so good for him is because the adults have decided to put him in charge of his own life. We don’t get to create an image for what a good kid looks like. He already is a good kid. The team helps him learn how to function in the society we have today, not for the society that we ought to have. The society we have today doesn’t make room for people that are different very easily. We need to push the public school system, the courts and challenge societal norms to achieve the changes needed to make room for everyone. It will take years of persistence, awareness and organizing. In the meantime, therapy and other support is the answer for us.
I believe that sharing my life will help create a community that feels urgent about having a more empathetic and inclusive society. Not everyone will understand or agree with my methods. All I can do is keep the conversation going and keep doing the best I can.