Susan's Blog

Friday, December 21, 2012

Cold and wet but still standing

Nat went off to the Boston Ballet to see The Nutcracker tonight with Quest, his social group. John came by here with Nat’s suitcase after he’d dropped him off at the Rec Center. It came up that Nat needs a raincoat because as John put it, “When I picked up Nat today from work he was soaking wet.” Apparently his winter coat, his pants, and his hair, were completely wet from work. John asked the people in charge of Nat at his day program what happened, and they did not know. They said that he must have gone out to do carts or something in the rain and came in wet.

John asked them where was the job coach when this was happening, because it is a safety issue. Nat should not be allowed to get so wet, he could get sick. Where was the job coach? Where was the person looking out for Nat? Why didn’t they know that he was getting all wet? John said, “They should have known that Nat would just go and not say anything about being wet.”

Nat is very compliant, and someone was asleep at the wheel. John is on top of this, with emails to the people in charge at the day program, but as he put it, “If I don’t hear back satisfactorily I am going to turn the matter over to you.”

As far as I’m concerned, the matter is already mine because I am so mad, and so sad. John said he’d CC me on the next go around. I think I will call the day program as well.

Here is the thing, again and again. The disability prevents him from speaking up for himself. He just thinks he has to go because they are telling him to. Ahhhh, I hate that he didn’t know or didn’t think he had a choice, that he was out there wet, cold, and uncomfortable. No, no, that is not how I’m trying to run this world. But the fact is, I don’t run the world. If autism moms ran the world, sons would not get soaked in the rain. If autism moms ran the world, they would live forever. Or they wouldn’t have to, because the world would behave itself.

The good thing here is that, listening and looking at John, I recognized some of my own outrage and determination to set this right. He said, “I just was so upset, I almost yelled right there…” He is on top of it, he is right there with Nat. And I don’t need to be first in command on World Duty because John is.

But I’m still scared. I feel like something slipped today, and I’m not quite sure if everything is back where it should be. He’s a little hoarse and I thought I just heard him try to throw up. I have to remember, he’s strong and young, he’s not a little boy, he just got wet. A lot of us got wet today and we’re okay. He came home looking like a model, with new stylish clothes and his blond hair gleaming. He saw the Nutcracker, and when Ned asked “what happened in the Nutcracker?” Nat answered, “The girl fell down.”  Maybe it was a bad day for The Boston Ballet, too.  At least Nat is still standing.


Oh Susan… this story just breaks my heart. I am happy with the ending but… I just can’t help picture my own Joe in the same situation(or your sweet Nat).

Such vulnerable people(kids- they will always be our kids, sons/daughters)we have.
Thank you for sharing <3

— added by Amy on Friday, December 21, 2012 at 11:28 pm

Breaks my heart too, Susan…thank goodness he is ok. Nothing more frightening to find that when inquiring as to what happened and those who are supposed to be responsible for our children have no clue why or how it happened. Unacceptable…..and I wonder if there are so called job coaches elsewhere who aren’t doing their jobs? Hmmm…

— added by Sarah Conley on Saturday, December 22, 2012 at 10:21 am

Your touching blog illustrates so well the occasional hazards of day programs. Many day programs/jobs look good on paper. The actual execution of the program and daily supervision can and does fall short of what it should be at times. Thank God you are there to advocate for Nat and demand answers.

— added by Row on Saturday, December 22, 2012 at 2:55 pm

I don’t think I’d be worried as much about him getting wet due to him being unattended but I’d be A LOT more worried about him being in a parking lot doing carts unattended! What if he had gotten hit by a car? Who is in charge of his safety?

— added by scary on Saturday, December 22, 2012 at 3:06 pm

Poor Nat. I felt kinda similar a few weeks ago when Dylan came home from school and when I opened his lunch box his water bottle was still in there unopened. Apparently someone different took them to lunch and didn’t realize he needed help. That pretty much means he most likely had nothing to drink the entire school day 🙁 Might seem like a small issue to some but to me it was a day-ruiner, thinking of him going thirsty all day. And yes both of us got the real flu the following week, just sayin.

— added by eileen on Sunday, December 23, 2012 at 8:09 am