Advocacy

I had so many great blogging intentions yesterday. I was all set and ready to post my first Thursday Doors post when I got a call from my youngest kid’s teacher – the school advocates were going to visit the school. So I rushed over to get their help.

Their first question (and probably yours at this point too) was what’s the problem? My son is fed by g-tube, I told them, and is being forced to go to the infirmary every day to be fed. He’s alone over there with the nurses (particularly Nurse Nancy) when he’d rather be in the cafeteria, socializing with his friends. I added that we (myself, the principal and my son’s teacher) had tried to talk to Nancy about the set-up but she refused to even meet with us. They agreed that wanting to eat with his friends was a reasonable thing to wish for, and so we all (me and four advocates) walked over to the infirmary together. It’s a five-minute walk, outside. We’re in Canada, so that means it takes longer in the winter with getting dressed for the snow and then trudging through it.

First the advocates talked to my son, who said yes, he really really wanted to be fed in the cafeteria. So they approached the nurse. She was livid, as I expected her to be. She insisted she had never heard of a meeting, let alone refused one. She said my son spends enough time in the school already and doesn’t need to be there for lunch, to which the advocate replied he’s already disabled (he’s Deaf) and so, excluded from society. Having to be excluded further by taking him away from the precious time he has to socialize with his peers is potentially damaging to his psyche.

Nancy said it would take too long to feed him at the school, and that the other kids wouldn’t wait for him to go out for recess. But that, the advocate said, would still be time he doesn’t otherwise get to socialize. Then she said he could come to the infirmary earlier to get back for more recess time – so why couldn’t he start feeding earlier at the school and be finished at the same time as the other kids? It would also cut down on the traveling time.

Then she said it’s just the way it’s done – all the other Deaf schools in the province feed the kids with g-tubes in their infirmaries, to which the advocate said it’s not so. He’s seen kids in other schools feed in the cafeterias with his own eyes. Take that, bitch!

She said his feeding pump doesn’t work properly – I told her I have a new one on order and it will arrive next week. Ha! Take that times two, bitch!!

She said his behaviour when he’s at the infirmary is bad, so it wouldn’t be appropriate for him to eat in the cafeteria. The advocate said that’s not relevant. And besides, he’s a kid!!

Her final argument is that there isn’t the nursing staff to send over to the cafeteria. So the principal’s boss is going to talk to Nancy’s boss and see what can be done. As the advocate said to me, he has a right to eat with the other kids. He shouldn’t be punished for having an extra disability.

In all the years I’ve known Nurse Nancy, I’ve never got along with her. It’s like she’s desperate not to let go of my son. With the lack of any better excuses she blamed my son, (his behaviour) and me (the pump). It was wonderful to have someone on my side who didn’t back down. She’s a real nasty piece of work – I don’t think I’m the only one who’s a bit scared of her.

So they’re going above her head. I just hope she doesn’t make my son pay the price in the meantime.