A delicate balance.

We’ve been walking a really fine line here at Chez Monkey for a while now. Since Monkey’s AT specialist passed away, actually. We’ve been trying to deal with the sadness we feel at having lost someone we really liked. Someone who was always such a huge advocate for Monkey within the IEP meetings and, also, with our insurance company. She managed to get my insurance company to pay for a $7,000 device for Monkey when the policy stated they’d cover $750. After our deductible. So…she was pretty much a miracle worker. AND she was nice and funny and so completely dedicated to her students. She would e-mail us at all hours of the day though we tried very, very hard to respect her “non-school” hours.

On the other side is this, Monkey has a $7,000 voice output device that is nothing more than a weight in his backpack. The AT specialist passed away just a week after she locked down the device so thoroughly that we could not even turn it off. We had not received any training on the device at all. The teacher and classroom assistants had not received any training on the device at all. There is no plan to integrate it into his day. The district had two AT specialists but we found out after E’s passing that the other, had quit, possibly weeks before. No one will say.

So.

Monkey has AT services written into his IEP. The district has no one trained to provide this service due to this terrible loss we’ve all suffered. Currently, the inclusion specialist is taking the 30 minutes a week that belonged to the AT but she has no idea what she’s doing. The device maker did set up training for yesterday (which I couldn’t make) so that is a step in the right direction but that is the result of Duhdee taking the lead, not the school.

I’ve been waiting for the district to come up with a plan but so far nothing has been put forth. I don’t want to make this into a “thing” but it’s quickly headed in that direction and it makes me sick to my stomach. I don’t want to have to call my advocate and call an IEP meeting to work out compensatory services. I don’t want to have this fight when there is a much bigger fight looming this spring over placement…there is no inclusion classroom in the district for 1st or 2nd grades and that is where Monkey belongs.

I guess this isn’t really about what I want though, is it? This parenting gig never is. It’s about what Monkey needs. I’ll be making that call to the advocate now :-\

10 thoughts on “A delicate balance.

  • January 7, 2011 at 8:38 am
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    Is it a dynavox? We see Jessica at Boston children’s Waltham office. We got the device a few months ago but have held off on using it because Jake has been in a period where he is interested in trying to speak. Jessica has been great, she also worked really hard to get this for Jake and helped develop his Iep and is very accessible.

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  • January 7, 2011 at 8:42 am
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    No, he has a Vantage Lite from PRC. I think we may need to see someone outside of the district for help. Waltham is just a hop and a skip from our house. Hmm…

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  • January 7, 2011 at 8:42 am
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    It’s a Vantage Lite. The rep from PRC was really helpful yesterday. He’s also available to us via phone/email for assistance as well.

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  • January 7, 2011 at 8:43 am
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    Which is helpful but he’s not going to be on our IEP team…

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  • January 7, 2011 at 8:50 am
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    Right, we need someone we can have on our IEP team.

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  • January 7, 2011 at 8:51 am
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    He won’t be that, he needs the district to continue to like him. We don’t seem to have that effect on the district *snicker*

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  • January 7, 2011 at 9:01 am
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    best foot forward — tend to Monkey’s needs. You both have so much on your shoulders but remember she is watching over all her children, including you. Gather your efforts and pull forward You can do it!!

    Reply

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