Making Room to Grow

It’s too hard. He can’t do it. She isn’t ready. They will never get there.

Any parent of an autistic child is well acquainted with fear. If we take a moment to really examine this deep-rooted fear, we realize this stems not from autism (and all its ways of being, knowing, and experiencing the world), but from the recognition that the world is a confusing, unaccommodating, and often cruel place. How will my child exist in this world? How will others perceive them? How will they cope without me one day? I’ve talked to many parents and guardians who live in this everyday.

It’s hard to understand, if you haven’t lived it. Sometimes, teachers and parents experience a disconnect because educators may not understand how much fear is driving parents. Teachers think about what the child needs here in this moment, while parents are thinking 60 years down the road. Teachers have the view of the whole class and what is “normal” for that age group. Parents may not have this perspective. Teachers may want to metaphorically push a child out of their comfort zone into the proximal zone of learning, while a parent may want to protect their child at all costs. Their child has experienced so much terror and trauma already - especially at school.

I’m not a parent but I have an inkling of this visceral anxiety. One time, I was taking care of Danny while my parents were away. Danny was enrolled in a new social group and for the next outing, they were going to see a movie. This was a big step for Danny. He loves animated movies and we usually go together to see the latest release. However, he’d never seen a movie without a family member present. What if he freezes? What if he gets separated from the group? What if …?

My identities - as both a teacher and a part-time caregiver - went to war! At first, Teacher Me was calm and collected. We reviewed in advance what he might expect at the movie theatre. We roleplayed paying for a ticket and buying popcorn. I checked in to see whether he was looking forward to it. Still, he was visibly nervous as we drove there (Sister Me was on edge, too, but trying not to show it).

“I’ll come in with you, help you find your group.” Sister Me stifled the urge to jump in and take over as he bought his ticket and popcorn. Almost immediately, someone came up and said, "Hi Danny!" and Danny returned the greeting. Sister Me fretted, What if he doesn’t know what to say next? Danny was staring at his feet and biting his lip. Without missing a beat, Teacher Me facilitated some of the conversation and then smiled optimistically as I gave Danny a time reminder, “I’ll be leaving in 3 minutes.” The group leader came by and assured Sister Me, “We’ll take good care of him.”

How many times have I said that to parents?

As the group started filing into the theatre, Sister Me reminded Danny to sit with the person who greeted him, and promised I would be back by the end of the movie. Did my voice sound too panicky? Danny looked like he was walking the plank. Now, the teacher instincts in me were telling me, Blah blah, greater independence, blah blah. My sister instincts kicked in, every fiber of my being wanting to trail into Theatre 6 after him or yell at his receding image, “You don’t have to go!”

Somehow I navigated to the car while my two sides battled. Logically, Teacher Me knew Danny would most likely be fine – there would be no onus on him to carry on a conversation in a theatre. Besides, he loves movies, has been to many, and he’d no doubt get into the zone and his sole focus would be on the movie once it started. He’d no doubt give me a running commentary on the ride home! But when Sister Me got to the car, I felt so overwhelmed, I cried! After a few minutes, I wiped away the tears, took a deep breath, and went home to bake some cookies!

Before the movie was out, I was waiting in the hallway. People began streaming out. My heart was beating out of my chest as I scanned their faces. Of course, Danny was one of the last people to exit the theatre (he loves to watch the complete credits). When I spotted him, he was grinning ear to ear. A few other folks said goodbye as we were leaving. Danny replied in a confident voice.

“How was it??”

“Great!”

“I’m so proud of you! I hope you’re feeling proud of yourself for trying something new!”

“Yeah!”

That trip to the movies was a teachable moment, for both sides of me. Teacher Me grew in compassion for families and for autistic folks. New experiences may be a stepping stone for the whole family. Sometimes, they’ll be ready and sometimes they won’t. It’s not up to teachers. I now engage with families with a greater appreciation of where that fear comes from. With any suggestion, I must first satisfy their urge to protect themselves or their loved ones. Families know their child best, and everyone’s anxiety needs to be at a manageable level to proceed with something new. I now speak to families about their fears and I support them, where they are.

Sister Me also learned a few things. Firstly, I can’t always control the outcome, but I can control the preparations, which can control my worries to some extent. Secondly, my “what-iffing” worries don’t always come true — in fact, usually they don’t. And thirdly, tough moments like this allow everyone the room to grow. Not only did it show me that my little brother was capable of doing something new on his own, it showed Danny he could. My stepping back allowed him to take steps on his own – and I was still there to support him, however far he got.  

This outing was a success, but that doesn't mean each new experience will go perfectly. Sometimes it might fail. The memories of times things didn't work can be a powerful deterrent. You know your child. You can ask them if they're ready to try again. Sometimes, you have to take a more graduated approach. Ask your child: should I sit in the back of the theatre next time? Or I can drink a coffee in the lobby? You may opt to go in a different direction entirely. That's okay. Growth happens, all the time. Sometimes it's in leaps and bounds, and sometimes it's a tiptoe forward. There is no set timeline for this progress!

Since then, Danny has tried many new activities. We’ve actually made it our thing. Every birthday or Christmas present is usually a new experience to try together. And with each excursion, we both grow in confidence:

I can do hard things. I can try something new. I can handle the unexpected. It is okay that I am a work-in-progress.