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.
I love this photo of Pudding, mostly because of this evil smirk on her face. I don’t know what was going through her mind, but I think humankind should be prepared to suffer, just in case. I can’t tell you how many people say she looks like me here, she definitely gets her evil from her mother!
One day I’m going to catch this kid smoking, and try to tell him it isn’t cool, and he will wave this photo in my face! He looks like a mini James Dean, but with more attitude. No smoking though, son. It’ll still kill you, no matter how cool you look in the meantime.
Yeah, yeah, I wrote some words on Wordless Wednesday. What can I tell you? The government shuts down and you get anarchy, people!
About a month ago, I went to see Cubby’s teacher for his report. Now, Cubby is 4 and only in preschool, and I’m not really sure we should be doing reports, but this is the way of the school, so we do. Actually, it is a good time to catch up with the teacher and address any concerns. Cubby gets speech and OT during school hours, and the therapists send me weekly reports, and on the whole he is doing well.
On the whole he is doing well at school too. He has a couple of areas of brilliance, and a couple of areas of all-too-familiar struggles. For the most part, there was nothing new. This teacher likes Cubby and handles his eccentricities and active imagination very well. Only one thing she said actually surprised me: he wasn’t participating in music class.
Cubby loves music. He is musical. Even in his sleep he makes harmonic noises. He loves to sing, and he can identify all the popular songs that come on the radio. When I told him my friend had written the music for one of the songs we heard on the radio, he became convinced that all music was made by our family and friends. He doesn’t always let me sing, but he certainly enjoys to do so himself. My dad plays guitar in a band, and Cubby tells me he will be a rock star too. He struts and dances like a Jagger-Mercury hybrid, so it wouldn’t surprise me.
But telling me he won’t participate in music class? That surprises me. Cubby being quiet? Surprises me even more.
I wondered if he just didn’t like the choice of rhymes. If the teacher played Maroon 5, Fun or (eek) Bon Jovi, she’d surely see another side to him.
Or would she?
Cubby was singing at the dinner table some South African song I wasn’t familiar with, and I guessed he’d heard it at school. I asked him why he didn’t sing in music class, and his response shouldn’t have come as a surprise to a seasoned spectrummy mummy. He loves hearing himself sing, but the other kids sing “different.” I guess some of his classmates-like me- sing different notes (okay, off-key), and he just can’t stand it. He told me he really didn’t like music class, and didn’t want to go any more.
We had a little chat about how problems have solutions, and if something is hard for him, he can always tell us so we can look for ways to make it better.
I suggested he wear his blue head ‘cones’ to protect his ears, and he was so enthused with this idea that he was wearing them the next morning before even setting off for school. I emailed the OT for her suggestions (that would be another round of Therapeutic Listening) and pulled them from his head to tuck in his backpack.
And then came the next problem: without the protection he could hear ghosts, vampires and zombies. But problems have solutions, I just need to shift the battle from sensory to supernatural.