A little piece of heaven

Hi everyone,

I’ve decided to extend the giveaway until Monday Dec 20th. We’ve been so sick with a stomach bug that I haven’t had a chance to count all of the entries, create the entries, and set up the actual drawing.

Good news for you though! More time to submit more entries!

I can’t express how grateful I am for the amazing response we’ve had thus far. We have some INCREDIBLE ideas and we already made a few boards out of the ideas and Nathan is LOVING all of the new ways to talk and play and learn! THANK YOU so much to everyone who has participated thus far.

When the contest is finished I am planning on creating a page with all of the ideas so other families can also use them for their kids who have communication devices. Eventually I plan on sharing Nathan’s user file for other Dynavox users to simply import, and videos of how we implemented these ideas.

Please continue to think of ideas, your creativity will benefit many children!

The drawing will happen Monday Dec 20th at 5 pm PST. I will email everyone who commented with the URL to view our live webcam. The winner will be contacted Monday night and I will mail out the Xbox with Kinect right away so the winner gets it before Christmas!

Kristina wrote an AWESOME post that I wanted to share:

When real magic unfolds

Please stop by her blog to read this post it is so well written and true about our kids!

Also, since we only have 2 days left for our Giveaway, I wanted to show and example of how Kristina promoted the XBOX giveaway:

Giveaway to Know About

Kristina is also working on establishing an augmentative communication system for her gorgeous little girl Emma, so hopefully all of your entries will help Princess Emma too (and other kids who are also working on augmentative communication).

Thanks so much for the amazing entries we’ve gotten so far, it’s been wonderful!

You, dear readers, must have miracle powers because right before I posted a plea for prayers was the last time either of the kids threw up. They are doing so much better today.

But on to the real reason for my post. I am confused. I just got back from an IEP meeting and I just don’t know what to think.

Most of the meeting was the team sharing their views on Nathan and the results of their evaluations. They all seemed to capture Nathan’s essence and to really understand him. He really does have an amazing group of women (all ladies!!!) on his team. They did a good job figuring him out and got a good sense of his personality.

Then they gave me the results of their tests and they all placed him between 18 and 24 months developmentally (cognitively). I thought that was a good start – given that during our last meeting the issue was they didn’t believe he was in there at all and couldn’t even recognize a ball – but I do believe Nathan is further along cognitively.

Because of this low score, however, they did NOT change his label from Multiply Disabled to Orthopedically Impaired, which means he still does not qualify for the funding or services that we had requested. The argument is that there is too large of a discrepancy between his physical and cognitive age, and that the OI and LI funding is for kids that are more cognitively present but physically impaired.

I don’t understand. I just don’t understand. They “get him”. They all agreed that he’s teachable. They all agreed that, when properly motivated, he wants to learn. They all agreed that he has an intent to communicate. They all know he is a social child who wants to learn, IF learning is fun (he is 4 for Xsakes!).

So why are they making it so much harder? If Owen and I hadn’t bought the Dynavox for him, they would’ve said he wasn’t capable of using it. However they all watched him navigate over and over and over again to the box that said ” I want to go out – in the car – to the Mall”. Statistically because there were so many choices and ways of getting around the Dynavox the chances of him doing that accidentally over and over again are very small. He is making choices. He does so well with the Dynavox. When he is well motivated. But the lady who evaluated him believes that he is too low cognitively to qualify for the funding that would’ve gotten him that device.

The advantage is – we have it. We don’t have to fight them for the device. I spent months looking for a used one and then one of Nathan’s angels (thank you N!!!) helped us find a used eyemax. So fortunately that is not our fight.

The issue is – why are they setting more and more roadblocks for him?

I asked for the low incidence funding so that they could help us device ways of using the Dynavox to help with this cognitive development. Because I am NOT an SLP or a Developmental expert and can only program what I know on the device. I wanted them to have someone work with him at school every week, programming new pages, improving his accuracy and consistency.

Instead I am told he is not cognitive enough to qualify for the resources to receive that help.

Which means – they will not go out of their way to help “unlock” Nathan and give him the ability to communicate with the world, to have some control over his world. They all “LOVE” him and think he is the cutest thing…but what about actually helping him? What about going beyond the enjoyment of the smile and really going above and beyond to help a child who is so obviously wanting to learn and to communicate?

If I could kidnap his teacher and bring her home with me, I would. She goes above and beyond. She works so hard to help him. She is doing everything in her power to help Nathan. I couldn’t respect or appreciate his teacher any more.

I just wish she’d receive more support. Her class is now overcrowded because everybody loves her and she’s getting more and more kids. People are moving into our district because they hear how amazing this teacher is, so the class went from 4 kids to 12. Making it hard on her to keep up. And putting all of the weight on her to keep up with 12 IEP’s.

Here’s the problem I have. When we got the Dynavox several months ago I asked them for proper support with it – a mount, someone trained in it who can program it, daily work on it. They jerry rigged a mount and his teacher IS working on it with him. Now what we’re lacking is someone to use the Dynavox to teach him how to communicate, someone to program new boards all the time and to come up with innovative ways of teaching him using the device. They are saying they can’t do that because he is not smart enough. I am saying now you have the tool to teach him and once you teach him he WILL be smart enough. But because he doesn’t show consistency with the device they don’t want to allocate the funds and personnel to train him on it. His teacher works on it every day…but I haven’t gotten even ONE good suggestion from them on WHAT to program INTO the device that he can use to learn. They asked me to add in the colors. I did. So they ask him, hey Nathan, where’s yellow. Most of the time Nathan doesn’t pick yellow because he simply doesn’t want to. He knows the color yellow. I will bet a finger that he knows the color yellow. But the problem is Nathan doesn’t work on command. He won’t just choose the color yellow because you asked him to choose the color yellow. He’ll choose it if you give him chocolate. Or do something that makes it highly rewarding. But if you just ask him to do it he won’t do it. Because he’s 4. And defiant. And it’s hard work for him and he doesn’t work for free.

One of the psychologists was lovely and mentioned that the key is to use an ABA type approach and to give him measurable trials with rewards. I loved her. She was SPOT ON and figured out the method of motivating him. That was the good part of the meeting. We’re going to create a “REWARDS BOX” and every time he gets an answer right, he gets to pick something out from the rewards box and play with it…from bubbles to a car he likes to fart sounds to anything he enjoys playing with).

But the issue of the actual content of the device is still up in the air. Which should be supplied by an SLP exprienced with communication devices. And is still not forthcoming.

Which brings me back around to you. And our XBOX contest.