I am confused

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.


  1. Sorry your going through all of that. All of Ryland teachers and thearpiest all know he can learn and they work on it alot. They started off teaching him just 2 colors at a time with cards, pretty simple things. I guess it is different with our school because Ryland is the only child in a wheelchair and at the level were he’s at. Right now there’s only a couple kids that go to the recource room. He does alot of stuff with his classroom and his nurse helps him.
    When Ryland was first dia. we were told he won’t beable to learn but after going to the HPE conferences we were told he could learn it’s just going to take longer, after telling our school that they have worked to get him to learn colors, numbers, animals and they still are working on his letters in his name, this has taken 3 years now.
    I wish I could help you out more but you seem to know more than me

  2. Hi!
    I was referred to you by Barbara at TherExtras! I was a preschool special education teacher as well as a k-2 multiple disabilities teacher and I am very familiar with the situation you are in. One thing I will suggest up front is to get an advocate, groups like the local Autism society (yes, I know Nathan does not have autism but they have great resources for advocates) or the ARC can be helpful for finding advocates. The school district is not going to change his label unless you have documented data to support your claim. Keep data at home of what he is capable of communicating and how he uses the Dynavox. By the way, BRAVO on getting Nathan a Dynavox! I fought for and got one for a dear student of mine through his private insurance because the school refused him for the same reasons they refused Nathan. His parents got an advocate, and the district is now providing therapy with the device as well as vision therapy and his other standard therapies.
    As for boards to make – you have a genius of a system in the rewards box. Make a board where he can request highly reinforcing items and have to discriminate them from undesireable objects like a sock or a least favorite food. Then you will know he is choosing accurately because he wants the desirable item and not a spoonful of, say, spinach or a sock to play with. Also you can make a board so he can be involved in daily routines – find out the class circle time routine and program that into his device so he can participate. No child is going to say “yellow” when asked just because someone said to, especially when it is such hard work!! He can work on recognizing his name for a reward – preacademics- and using the terms “more”, “less”, “some”, “all”, and “none” to describe sets of objects – preferably reinforcing or engaging objects such are there more jelly beans or more lima beans and do I have some of the candy or all of the candy. I am trying to draw on all the tricks I used for Caleb! We did pages so he could talk about his favorite things with his peers – favorite movies, favorite tv shows, he was in to racing motorcycles and cars so we did a page where he could talk about watching the races with his dad. Every day we worked on him telling us one thing about himself or his day.
    I hope some of these ideas are helpful. If you want more or want to use me as a sounding board in any way please feel free to email me!!

  3. I don’t even know what to say. I imagine you are going to discuss this with the lawyer you consulted with, but this is just amazing to me. I sometimes wonder if we are doing enough for Emma as we are just working on More on the iPad at school right now. At home we are back to getting a consistent Yes/No. Once we have a consistent Yes/No and an eye gaze for choices the ACC at our local hospital will work with Emma on the appropriate device. But, we have to get her interested enough to do the Yes/No consistently and it has – quite honestly – brought me to tears on more than one occasion. The fact that Nathan can tell you so much with his Dynavox and then not have an expert work with him to program it is criminal. Any way for your private insurance to pay for this outside the classroom while you work on getting the school system to do what it needs?

  4. So sorry you are struggling with this. We had so many issues with getting appropriate services when Junior was young and still fight the battle. With him testing where he did they certainly should be giving him speech services and training on a device. How is he supposed to become more able to use it without the services.
    We also ended up purchasing our own device for Junior because we knew he could learn to use it. He did learn to use it and amazes me every day with how much more he understands then we initially thought.
    Good luck, hugs and prayers.

  5. Unfortunately, I think the parents end up doing most of the work with communication devices & it just gets worse as they kids get older. So many of the assistants in the classrooms don’t really know how to use them & there isn’t a big enough budget to pay for them to sit in a classroom to learn what the devices are really capable of. Xavier got his device about 7 years ago – he’s 13 now. Guess who programs it? Me. Always has been me, even though when he first got it the school said they would help. And after having the device for so many years, he still hates using it to make choices – he prefers to speak (he thinks the device is too slow for regular communication – people don’t want to wait for him to type in his response – but he will use it connected to his computer to do written homework). He also uses it to take tests at school. Whenever HE thinks it is a necessity, he will use it. It is so interesting to watch kids use the communication devices – what they determine is “important”; what they are & are not willing to do based on how hard it is & what the reward is. And that is magnified as they get older! The kids certainly let us know they are not animals at the circus to perform on cue… 🙂

  6. Sally Fraley says

    you are in a city..near a college that has IT degrees? Lots of times those students need an elective- so they opt for independent study– maybe approach an IT instructor and describe Super Nate and what you need….I bet you can find a student to work with you for the credits–the down side? High turn over….Z is a computer geek and I think he would go for something like this….

  7. Sally Fraley says

    🙁 Marcela- that night at dinner- When N was sick -my UNTRAINED but kinda observant self put N’s understanding @ 2.5 years….

    And he was busy being sick and looking at all the city lights….

  8. Sally’s comment got me thinking… did you do some kind of ACC-centered program at UCLA way back when? Am I making this up? Could that be a resource?

  9. Oh boy! You and I are in similar boats right now, except we do NOT have a device, YET.

    One thing that helped me is getting lots of video of my daughter using a borrowed device. She wouldn’t do it for them at school and they kept telling me she couldn’t. Once I showed them the video, they couldn’t make that claim anymore.

    Is there any way you can ask for a second opinion? I know that if I disagree with one of their evaluations, then I can request an outside source do another eval that the school has to pay for. Maybe you could do that, then find an SLP at a hospital therapy center that could help out. That has been the only thing that has helped us! The hospital SLP has wonderful ideas and lots of training on devices. She has opened up a whole new world for my daughter, but the school is making it hard.

    Don’t give up the fight. Your son is capable of so much more than they think he is, and that device is so much better than picking colors. Our school actually wanted to use the device to choose what color crayon she wants to use. Imagine that, a $8000 device just to pick a color! They need to think of the device as a teaching tool, something that they can use to teach him, not just to make choices.

    There has to be ways to work around what the school is telling you. I also suggest getting an advocate. Good luck!

  10. Sally Fraley says

    did the rutgers stuff come back? Those scores weren’t high enough?

  11. What state are you in?

    Remember the IEP is a process. If you ask for stuff and its not in writing, then the denial isn’t in writing so you have nothing to appeal. Everything has to be done in writing.

    And it’s not being witchy to appeal some decision they make, that is your right.

    So what drives the IEP? Data. You like most of the data but not all, so request additional assesment. Either through school or via an IEE. Bad data can haunt you for years. There are specific tests to assess children who are nonverbal, although a lot of them rely on motor skills to make up for the nonverbal. The staff might have to look beyond the 4 or 5 tests they are used to using.

    One part I didn’t understand was what you were saying about his educational label. Qualifying for special education via a “label” just gets you in the door. No services can be restricted to just one label. A child’s needs (determined via evaluations) determines goals and services.

    What does the school’s AT eval look like? What does your private eval look like? How do they match up? Does he need an IEE for AT/AAC to reconcile the differences?

    It’s very nice that staff love him. But he’s not a puppy, he’s a boy. They need to learn how to teach a child who uses AAC.

    I always said that no way will my daughter say “that is yellow.” It’s boring. She knows her colors and has for years and has ZERO interest in proving it to you. But if you say “If you tell me what color this m&m is, its yours!” Heck yeah she can identify yellow. I mean there are so many ways to use color in fun activities. Aren’ the kids learning patterns at age 4? “Red blue red blue red … What’s next Nate?”

    Are they using Brigance or something to follow his skills? So they are not just repeating working on the same item (like color identification) because that is an unneccessary irritation to him. That’s not encouraging his love of learning.

    Best wishes to your Nathan (my youngest is a Nathan too).

  12. Sally Fraley says

    Marcela- I just read this again- and it seems like Nathan falls between the two categories based on their tests- he needs his own program- some from column A and some from column B- and they are not willing to create it for him–
    is it at all possible that he spend part of his time in each class?
    can he have his own aide in the higher functioning class without changing his classification?

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