Friday 31 May 2013

Tea and bitterness

All of the end of year stuff at Monkey's school is happening, with really mixed emotions for me. It has been a difficult year in some ways, though Monkey himself has been fairly oblivious to the problems, which is as it should be, really. He has made good progress this year, especially in language and communication. With the increased ability to express himself, his self injurious behaviours have decreased both in frequency and in severity. He is a happy boy most of the time. There are still many challenges, of course, and he still gets frustrated and angry and loses his speech now and again, throwing things and banging his head, kicking, biting and scratching when he is especially angry. Most of the time, though, he is able to tell us something is upsetting him, even if it isn't always clear what that something is.
 
Most of the problems have been grownup stuff, to do with funding, his school, which is also his service provider, and his bus driver. It hasn't been disastrous, just grinding and stressful. We will be moving this summer, and finding him a new service provider, which means renegotiating with the government agency that funds his therapies. That is not going to be fun, but is necessary. There have been issues with trust and expectations with how his therapies are administered. The SP at one point called child protective services, due to concerns about "hygiene and safety" surrounding his ongoing fecal smearing. I won't go into detail here, suffice it to say, the CPS worker found no concerns, nor reason to open a file. The SP still refused to move Monkey's therapy back into the home, citing concerns about the risks to his therapists, their employees. Funding here is contingent on home based therapy. In the end, the funding agency agreed to allow his therapy to continue on site at his school until the end of this term (June 27th), after which we will have to find a new provider, given that no amount of cleaning, negotiating or reassurances has changed the mind of the SP on coming into our home.

This has, as you might guess, left some feelings of betrayal and disappointment. He has done very well with the current SP, but they can't be bothered to accept his level of challenges.
We will be moving this summer, and finding him a new service provider, which means renegotiating with the government agency that funds his therapies. That is not going to be fun, but is necessary.

Meanwhile, the end of year festivities are a little bittersweet for me. The parent appreciation tea was yesterday. The kids did a little singing show and there was cake and a slide show of the children in his class. I almost didn't go. I didn't want to be civil and polite to the people who had been so adversarial and dismissive of me so recently.

But for Monkey's sake, I bundled Kitten and myself into the car, and was at his school at 10:18, three minutes late, but we made it. For all the misery this year has brought me, the look on his face when he saw me in the audience was worth everything. The fact that he still sat through the show and didn't jump up and run immediately was incredible. But he just kept grinning and pointing and singing now and then, and not until the last note of music was played did he leave his seat and run up to hug me. He was so happy to see Mumum at his school, so pleased to show me the pictures and take me to say hello to his teacher, aides and therapists. He participated. He showed self control. He SPOKE to people. He was amazing.
I am really am glad I went. After all, this part isn't about me. This about celebrating our kids, and all their hard work. I couldn't be more proud of my little Monkey.

1 comment:

  1. Holy guacamole, I don't know how you were able to be civil about the SP. My mind exploded just reading that!

    ReplyDelete