I was working on a post, something I had been mulling over the past two weeks, but I have to put that aside and share this. Because it matters. It’s so small, so seemingly insignificant, but it really, really matters.
Lil D came home on the bus today. Since school started up two weeks ago and with my in-laws out of town, I am left to manage the afternoon bus/pick-up schedule by myself most days. With Hamza in kindergarten in a school that doesn’t have bussing, I have to pick him up, which clashes with Lil D’s bus drop-off time.
So many days I’m picking up Lil D in the afternoon and then swinging to the other side of town to get Hamza before going home. The few days when my husband has some time and can get Hamza, Lil D then rides the bus home.
I haven’t minded this erratic schedule so far because I like bringing Lil D home. The afternoon bus ride has always been the most difficult and trickiest for him, especially the last two years. He’s tired at the end of the day and sometimes the bus is hot (and this summer, not air conditioned, which caused me to yank him from the afternoon ride home during the hottest weeks.)
And, as much as I can just cancel the bus altogether and do drop-offs and pick-ups all the time, I like for him to ride – it’s a constant challenge he is dealing with – how to regulate himself, handle a bus ride, sit appropriately and keep calm. But it’s a constant challenge for me as well – keeping a good relationship with his driver and bus aide, making helpful suggestions when necessary and holding back when needed.
It’s really a delicate balance. I want him to ride, but to do so I have to dance the dance with the transportation department. During certain periods when he is having difficulties and acting up on the bus, I pull him off to avoid something bad happening. (Because you never know when meltdowns could turn into aggression, which could lead to suspension. Besides, it’s better for him to take a break during those times.)
Lil D’s latest OCD (obsessive-compulsive disorder) behavior has also made his bus ride challenging. For a few months now, he’s been drawing his arms into his shirts, which seems pretty harmless on face value. But, it has become incredibly problematic , especially on the bus where he wears a harness. He wants to draw his arms in, and the harness restricts this behavior, which leads to meltdowns.
We requested a new, bigger harness and received it. And so while wearing that, he is able to draw his arms in. I feel like I’m perpetuating the problem, but it’s the best solution I can come up with for now.
So, back to the story — He comes home today, already off the bus and walking up driveway as I walk down to meet him. I turn to go back inside with him when the aide calls me to the bus:
I just want to tell you that he’s doing so much better on the bus! I saw that he wanted to be able to move his upper body around and pull his arms him, and when he couldn’t he was getting upset. So the past couple of times I didn’t fasten the upper part of the harness and just did the lower part. He seems to be handling it pretty well and seems more comfortable.
My face lit up. Thank you! Thank you! Thanks for paying attention to his needs and trying something new out.
Folks – this is the first time in ten years of riding the bus that a bus aide observed something about Lil D and then tried a solution to help him. This. Is. Huge!
Of course he’s had a few great bus drivers and aides in the past, to which I am very grateful for their care. Drivers and aides who pay attention to when he is having bad weeks, who treat him with respect and dignity, who ask me why he does certain things or gets upset from time to time.
But this is the first one who observed what he was doing, how he was uncomfortable and then did something to help him. And it is helping.
I texted my husband this news as soon as I came inside with Lil D. God bless her, he texted back to me.
You guys. You guys! This is the community of care I’m talking about. This is all the heart-wrenching efforts we make to send him out there on his own, to trust those around him to be accepting of him, care for him and help him. This is someone who not just straps Lil D into his seat every day, but watches to see what is agitating him and then does something about it.
These are the small, tiny gestures that mean so much to a special needs child and his family.