The beautiful blooms of spring are upon us. And with them, the pollen. God, the pollen. Lath Parivaar is not fit for public viewing. Our eyes are a wretched sight, and A cannot stop touching his, so he got sent home from school as he does annually, looking like he had golf balls in his head. We have to use ice packs to pretty much put his eyes back where they should be, and the shocker is that he actually lets us. Poor subdued little thingummy.
As unappealingly loathsome as we all look, we, like other foolish, greenish-fuzz-coated people around us, end up spending even more time outside because A cannot keep himself out of the warm sun. So there we loll, tissues piling up beside us, while A actually stims* on the sun. He has figured out through inherited scientific juju, that the sun is on one side of his beloved house in the morning, and on the other when he bursts out of the bus in the afternoon. So of course he has to study it, and observe where the rays land. It all takes a great deal of time, and I surrender yet again to the Proximity to Portentous Scientific Endeavors, as I always have (I am, in case I have never mentioned it, the child, spouse, and now, apparently, parent of scientists).
A was assistive technology-deprived for a month because he was romping with his school supplied iPad (which contains his speech app) during spring break and his knee landed on the screen, which cracked. My husband rushed to get it fixed the day before school reopened, but alas, A had done something to the ‘home’ button too, and the thing would not function.
Consequently, it has been a month of gnashed teeth, frustrated communication, and undermet academic goals. School people did make do with temporary pictorial solutions, but it still limited A’s options to form full sentences, or to talk about stuff not found in the pictures. Meanwhile, the school district and my husband have been colluding in trying to solve all the red tape issues, which have been numerous, and somewhat ridiculous to hear about secondhand. I don’t want to get into all the details because they will just make our tiny district sound bureaucratic, that would be bad, snort. But I shall just say—iPAD IS NOW IN A’s HANDS, AND PLEASE, DEAR LITTLE MAN, TRY NOT TO BE A DESTRUCTO AGAIN.
I won’t underplay how painful it was to see A without his speech device. His confidence was pretty badly dented, and even out in the community and at outside activities, people would often stop trying to include him because they had forgotten how to read his non verbal cues. It was clear how much that erasure cowed and discouraged him, and it hurt like glass shards for me every single time to see it happen, though I knew it was not intentional.
We had a Benjy moment** yesterday. A and I were sitting on the porch steps after school, watching the sun and the world, and a group of girls walked by. They were laughing and chatting, and A matched his pitch to theirs and started singing along. They all fell silent in alarm, and to put everyone at ease, I waved, and invited A to say hi, which he did. One of the girls waved back, but I noticed today that they made sure to walk on the opposite side of the street. I cannot blame them, but I will say this honestly—it is these moments that slam home the profound loneliness of being us.
There is profound beauty in being us too. We may not ever get the hang of properly belonging in our community, but we are people who cherish one another. We love with our whole beings. We cultivate patience like heirloom roses. The pollen we blow around is irrepressible singing. Our blossoms are the color of mutual delight.
*For my previous writing on stimming, go here:
**For my previous references to Benjy, go here: