As my autistic daughter gets older (she turned 13 two months ago), the issues we face aren’t as “fundamental” as they used to be. Gone are the days when we wondered if she would ever talk, when she needed a behavior modification plan, chewies and fidgets, compression vests and discrete trial learning.* She is still in special education, and still receives occupational and speech therapies every week, but now our job has been learning how to deal with her special needs in a typical school context, and in balancing her desire to “be a cool teenager” with showing her what the limits are to that “coolness.” An example of finding this balance is that her older sister (but not me!) is able to tell her that wearing FIVE necklaces to school or the mall is too much, even though she likes all of them and would love to wear them all together.
But some things haven’t changed. While it’s been a LONG time since we wondered if she would ever talk, her speech still has a sing-song quality to it that can be well, annoying if I’m otherwise tired or cranky. She still frequently gets her verb tenses wrong in conversation and her sentence structure isn’t what it should be. Her eye contact is sometimes good, but often not. Her voice is much louder than typical, and we constantly have to remind her to speak in a quieter tone.
Generally I’m pretty patient with her. I know she tries hard, so I try hard too. But there is one thing that gets to me almost every time.
By far the one thing that is almost guaranteed to get on my nerves and drastically challenge my patience is when she perseverates on an idea or event. For those unfamiliar with the term, to perseverate means to “repeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased.” My daughter will perseverate in speech. She gets an idea, event or thought in her head and simply cannot easily stop talking about it. And because her ability to “mix things up” in speech is limited, she’ll repeat the same things over and over.
When she starts repeating herself I have to start taking deep breaths, because I know it’s going to take a while for her to get through it. There was a time I used to say things like, “We’re going to stop talking about this NOW.” But I’ve come to realize that perseverating is just her way to try to process an event, to understand it. These days I’m better able to tolerate listening for a good long while before I’ll say something like, “I really don’t want to talk about this anymore. I need to move on to something new. What else would you like to talk about?”
It’s not always easy. And sometimes I fall back into my own old patterns. This happened a few days ago. I picked her up from school and heard all through the ride to pick up her two siblings how there was a food fight at lunchtime (I knew this was a fact because the parents got an email from the principal). Certainly that’s out of the ordinary, and completely outside of any experience she’s ever had in the lunchroom or at home! I knew she would talk about it, but after a half hour I was done hearing the same phrases over and over. And I reverted to my old behavior. I forgot. I told her (albeit nicely) to just stop. Ugh.
I’ve been stressed and tired recently and I am NOT on top of my game. Patience truly is a virtue, and one that’s lacking in me right now. But to be a parent (especially a special needs parent), means you need to dig deep to find that patience on a regular basis. How do we do that? There’s no universal checklist for self-care. I can only speak for myself.
Today was a good reminder to do the things that I need to do to take care of myself. The stress isn’t going anywhere anytime soon, but I need to get out my coping strategies so that I don’t start taking it out on my kids or spouse. As a pastor by profession, I find myself often telling people, “You can’t take care of (whoever), if you don’t take care of yourself.” I need to follow my own advice. My daughter needed my patience so that she could process an out-of-the-ordinary event that was HUGE for her. I’m sorry I couldn’t let her.
I apologized to her (which is something I try my best to model with my kids), and told her I would try to do better. That’s all we can do as parents, and as people. When we make a mistake, apologize and try to do better. Tomorrow is another day, a new beginning.
*I am grateful that my daughter HAS been able to make developmental strides in all areas – educational, motor skills and planning, and sensory. Please be aware that not all people with autism are able to make these strides. Autism is a spectrum disorder, ranging from mild to severe. My daughter’s experience is her own, and no one else’s.