The words I most often use to describe children who aren’t autistic are ‘typically developing.’ It feels a bit absurd to say, and oxymoron for sure. All kids develop differently, though some more than others. But I haven’t come up with a better term yet, so we’ll stick with that for now.
Pudding doesn’t pass as typically developing. She is much taller than most kids her age, so her development seems even more out of step than with other autistic children. She is a happy, hummy, whirling dervish of a child, and so far, hasn’t voiced that she notices her differences.
But her peers have. We attended the birthday party of one of her classmates this weekend. They were a lovely family who I met for the first time that day. The party was at a ziplining activity center. I was in two minds about going. I knew Pudding would struggle with the necessary motor skills, but would want to go to the party to see her friends, and eat cake (she is my girl). We arrived early and couldn’t find where to go in the chaotic mass of people on a busy weekend. The birthday girl found us, greeted Pudding, and didn’t seem to mind not receiving a response in return. She took Pudding’s hand and led us to her family.
More friends arrived, and it was time for the safety lesson before the kids took to the trees in the safety harnesses. But Pudding wasn’t interested in the safety lesson. She was dancing around and signing her own songs. I tried to demonstrate how she would have to latch on her harness clips to the appropriate places, and her hands just weren’t strong enough. I knew it wasn’t going to be safe for her.
The course is suitable for three year-olds and up, so I persevered with the efforts, and let her keep trying. Then one by one, other kids tired of waiting, and skipped ahead in front of her. First kids from her class, then younger ones. I felt that all-too familiar heartache of watching a typically-developing three year-old master something that was incredibly challenging to my girl of twice their age.
Soon Pudding got too frustrated, and started trying to take off the safety harness. I asked if she wanted to sit down, and she told me she did. Pudding has tried a zipline before, a much simpler effort with no harnesses and attachments, and I watched her fly through the air with glee on her face, so I could feel my eyes stinging that something she would love wasn’t accessible to her.
I asked a staff member to help her out of her harness, and he tried to persuade us to change our minds, convinced she was simply afraid of heights. He volunteered to go with her up in the trees, dismissive of my response that she wouldn’t let a strange man anywhere near her.
I began removing the harness myself, frustrated at being unable to communicate our needs with this man. And suddenly I realized it wasn’t just Pudding’s needs I had to accommodate, but my own. Every fibre of my body now desperate to flee this place where everyone else was having fun, and we didn’t belong.
Cubby does pass as typically developing. He is verbal, with just some minor articulation problems. His body moves almost as well as other kids his age, and certainly better than his sister, though he is two years younger. Unless you spend a long time with him, you won’t know that he tires quicker than others, that he is a little more floppy, that he can’t write his letters.
You can have a conversation with him, and he’ll pass for typically developing, until he gets on to one of his areas of expertise. You might be able to name all the planets, but he’ll tell you how many moons there are, or the name of the third man on the moon.
You might walk into his preschool to find him playing quite typically with the other kids, unless it is raining outside, or the class has moved, and he is curled up in anxiety. Then he doesn’t quite seem like the rest of his peers.
But when they are together, they are oh so typical. While we revel in being our unique selves, and aspire to nothing but the freedom to do just that; it is sometimes glorious to watch their relationship develop like almost every other sibling set we meet.
Today in the car, I gave Pudding some mints, and told her to share with her brother. And she did. She found a mint that was half the size of all the others in the bag, and served it to her brother. He whined and hit her. She hit him back. He told on her.
And I smiled. And then threatened to take back the mints if they didn’t behave themselves. I’m not perfect. I wouldn’t even say I’m typical. But as a parent, I’m always developing. I’m going to feel the crushing lows of things we can’t do, just as much as the soaring highs of what we can. This is how we develop. All of us.
I love a good storm. The fizz and boom in the air. The sense of awe in the power of a lightning strike. It makes perfect sense to me that our ancestors would venerate this energy, make idols of nature’s strength.
I love the feeling after the storm has passed; the air now lighter and purer. It smells fresher. The mind feels less fuzzy. Everything is calm and rejuvenated.
What I don’t like, is the feeling before a storm. The chaotic, swirling build-up. The stifling, oppressive air. The darkness.
Bring it on, I think. Rage as you will. We’ll breathe easier when you’ve finished raging.
Cubby is now terrified of storms. Always sensitive to sound, he cannot take the claps of thunder here, more powerful than any other place we’ve lived. And when his anxiety is up, when he can’t tolerate another assault, that is when the chime of nearby burglar alarms ring out in unison as houses are struck, foundations shaken.
We are just at the beginning of the stormy season here in Johannesburg, the lightning strike capital of the world. It is going to be a rough few months for our sensitive son.
His anxiety has swollen now that to the extent that it isn’t just experiencing a storm that scares him, like me, he can no longer stand the build-up. He’ll perseverate on the darkening skies, the thick clouds, that heavy air that he can’t describe but he feels all too much. But he doesn’t will on the inevitable, he just wants to escape from something that is everywhere.
It isn’t just storm season, we’re also raging through bidding season. We have no idea where we’ll be living next year, and trying to match up jobs with the schooling and therapeutic needs of our children is stifling. This time around it feels harder than ever before. Instead of excitement at the build-up to another transformation, I feel anxious about the inevitable life-altering changes that are coming our way. Like Cubby, I want to block it all out.
“It won’t hurt us, ” I tell us both, one stormy afternoon earlier this week.
I have no such need to comfort Pudding. Incredible, indomitable Pudding. She cavorts in circles as the storm rages outside, perhaps feeling the buzz in an entirely different way. Though her ears cannot tolerate mechanical and low-frequency noises, she seems to find natural sounds invigorating. She doesn’t tell me she enjoys the thunder, but her happy hum indicates it is an entirely welcome sensation.
I pick up Cubby, and copy Pudding’s patterns. At first she stops, curious as to the game. Then she carries on, and soon we are all laughing, as we dance around the room, forgetting all about what is happening outside our walls.
Bring on the storm. Let it rage as it will. My girl shows us how to frolic and laugh as though the sun is always shining through crashing changes, and remember the excitement of a fresh calm that will be ours soon.
Last week was Spirit Week at Pudding’s school. Each day, the pupils were allowed to dress up according to a certain theme. I was looking forward to this, because last year Pudding had loved spirit week, and I was sure she would again. But you probably know by now, dear reader, what happens when I’m certain of something.
This first day was pyjama day. She absolutely was not going to wear her nightgown. She would get dressed for school. Alternative pyjamas and nightgowns were presented, but it wasn’t going to happen. In the end, I dressed her in leggings and a t-shirt (which looked like night clothes) and sent some more options in her bag.
The next day was Topsy Turvy Tuesday (mismatch day) and I helped her to dress “wrong.” She looked adorable, but it turns out that dressing wrong meant that she felt wrong. All day long.
After Pudding’s worst two days of the school year, we decided to abandon Spirit Week for this year.
I don’t know why it was easy for her last year, but hard for her now. I do know that she likes to decide what to wear, and she feels in no way compelled to do something just because everyone else is. I also know I’m now glad she doesn’t have to wear a school uniform, because if there is one thing this kid isn’t, that would be uniform.
Of course, most kids love these days. The whole point is to build a sense of solidarity and community. The students can express themselves and feel like they belong at the same time. I wonder, as she gets older, will the desire to conform become greater that the need to be her own person.
Pudding’s school means to be truly inclusive. They don’t just want her to be in the classroom, she needs to fully belong and be part of the class, goals I want for her too. But sometimes I wonder how much she wants that.
On Friday we had Pudding’s ILP (Individual Learning Plan) meeting. The year has been going well, but there are some areas causing Pudding problems. She struggles to pay attention to her math work, she is overwhelmed on unstructured days, and then there is physical education.
Pudding does not like PE. That was a grand example of an understatement. PE is impossible for her. Her body doesn’t cooperate with her brain. Her muscles tire far quicker than they do for other kids. These additional challenges merit the addition of Developmental Motor Coordination Disorder diagnosis, in addition to her autism. She doesn’t understand the rules of games, nor is she intrinsically motivated by playing them. Not only must she absorb and process the movements, speed, noise, and feel of other kids rushing around her, but she is supposed to get her own body to do these same things, for reasons that are obscure to her.
The solution so far is that Pudding has had one-on-one time for the duration of PE, but this is no longer workable for her teachers who have planning meetings scheduled for the same time. So parents, teachers, therapist, and principal, we all got together to brainstorm supports and accommodations to help her to take part. We came up with some ideas to try, because all of us in the room were motivated to make sure she felt like she belongs, and has the school experience that every child is entitled to.
But the first step is always going to be to make sure that Pudding herself is opting in, that she actually wants to belong. What seems right to us might just be Topsy Turvy to her. It doesn’t really matter how weak or uncoordinated her body is, her spirit is incredibly strong. And we celebrate that unique spirit by listening to what it has to tell us, even if it isn’t what we want to hear.