Friday, October 9, 2009

Update on the Vantage Lite

The problem with being all subversive is that you then might obtain information that you perhaps didn't want. But let's start at the beginning. Ever read A Prayer for Owen Meany? It's not my favorite John Irving book (speaking of which, who borrowed and didn't return my copy of Cider House Rules?!). It's not even one of my top three. But the one thing that stays with you after reading it is the feeling that sometimes it takes years of things falling into place before you understand the journey.

The two most important things that fell into place for us and our path for getting Nea the help she needs for her apraxia are:


  • Meeting and learning from the wonderful parents in the monthly Windy City Apraxia group. I only attend 3-4 times a year, but I always learn a lot.
  • Reading Schuyler's Monster. That book has taught me how to never give up in the fight for the right services for my child.
Two weeks ago I learned from the kind parents of WCA that there is a counter that can be activated on Nea's talker. You can then download the information and see everything: time/date/which button pressed. I immediately realized the significance of this, of course. I called PRC directly to learn how that works. Since, you know, we've had no training yet. Let me clarify. No one on Nea's team, not her SLP (speech and language pathologist), not her special ed teacher, not her mainstream teacher, not her parents, have received one bit of training. After 7 weeks of school.

Doesn't this seem like something you read about in a "taxpayer's money being wasted" article? Something like "In other news, a $7500 device was supplied to a special education student, but it lies nearly unused, as no training was ever provided." Luckily! Luckily I am so clever. Remember how since I lost the battle for holding Nea back from Kindergarten this year, I asked for and received a 30-day IEP review meeting to discuss how the placement was working out for her? (link to that post) That meeting is this coming Tuesday.


You bet your sweet bippie I'll be asking how they plan to rectify the situation. Do we need an aide to work with Nea? I'm thinking we do.


I left a message for the special education facilitator this morning to see whether all the right people were invited. I briefly mentioned the lack of training to date. I wondered whether someone from the cooperative that supplies our schools with the Augmentative and Alternative Communication (AAC) device should be attending our meeting. I very much look forward to solving this issue.

So, would you like to know how many buttons on Nea's talker are pressed in an average 6 hour school day? How many would you guess? I mean, obviously how many words you say per day will vary based on many things. There are scientists who study that sort of thing.
The answer, for Nea, is less than 20. In half her waking hours. Five days a week. Less than 20.

And sure, you could say that she verbally says a lot more. And she does. But how many is that in an average day at school? Seriously. She's the quietest kid in the room.

This isn't my most lucid blog post. I'm swinging between being angry and depressed. Which is probably good, since I need to be clear-headed and logical by Tuesday.

7 comments:

arlopop said...

Rip them a new one. It is shocking how little the system does. Here in Cali the budget cuts have made it even worse. The Girl's IEP calls for OT and a once a week visit in home by a special ed teacher. Since the 6 month eval in august (which coincided with the budget slashing) she hasn't had an OT appt or a visit. The OT head did not get her contract renewed so they are short staffed. Our special ed teacher has been seriously ill and no one has replaced her. They have faced my wrath.

And unlike Nea, they are booting the Girl from the program on her third birthday in February. The rules says she must be two years behind to stay qualified. Absurd, since the differences between a 10 year old and an 8 year old are much less than those between a 3 year old and a 1 year old. The odds are she will be reinstated by the time she's five or six - she will only have to be at a 4 year status to do so. In the meantime she gets no services, which is ridiculous because if she got them she might not NEED them when she is five or six.

This has become a tedious and frustrating battle with bureaucrats. We know parents of kids diagnosed with autism who have almost been dumped because the kids are functioning better than the system permits. WTF!

It has reached the point where parents are seeking outside diagnosis and hoping it's awful so they can fight to stay in the programs. The risks are too great to be ignored.

As it is our liason had to fudge the numbers a little just to keep the Girl in the program at the 6 month eval. My god, my girl can't be understood by anyone but us and that is only 50% of the time. Her hypotonia requires a special bodysuit and orthotics. Her prognosis is "possible" improvement. And we had to fudge the numbers!!

I have about had it.

Sorry to vent like a blithering idiot but your post got me going.

Shea's Mom said...

First arlopop - this is awful that they are dropping services and it may be time to get outside diagnosis and a possible mediator to help you fight for the service. Good luck.

And Bluestem - Owen Meeney was chilling and the end stunned me for days. I agree, not many are as good as Cider house but, man, Meeny stuck with me.

About the Vantage - sigh - There is so much fight in each step forward, exhausting. But, I am glad you have a meeting coming up and hopefully they will see reason. What is the training like> Can you do it yourself? If you can get familiar at least you can direct your kid and you might find a side job training her teachers!

Good luck, hon, I am thinking about you.

Laura said...

I just want to applaud and hug you! You are doing an awesome job advocating for your daughter. Good luck on Tuesday!!!

Rob Rummel-Hudson said...

Have you spoken to a PRC rep about training? I'll bet they can help you out. Let me know in email if you'd like help getting that set up. (robert@rummelhudson.com)

-- rob

Anonymous said...

I will be thinking of you on Tuesday!! She is so lucky to have a wonderful Mom like you!

JM

Julie said...

Hello,

I am the regional consultant for PRC for the Chicago area. I'd love to talk to you about the training options we have available for family members, school staff, and private therapists. If you email me at jap.cons@prentrom.com I'd be more than happy to answer questions and offer support as well as give you my cell. phone number. Thanks so much!

Julie

Kate said...

Thinking of you today. You are Mama, hear you roar! It's going to be SO MUCH FUN.