[Many good things have been happening at Chez Flashlight in the last 24 hours. Mary decided to make S'mores last night, and we have a guest poster! The expert commenter known as Gigi and her daughter Stephanie are about to wow you with some brilliant, valuable advice about Individualized Education Programs (IEPs).

Gigi is a retired special needs teacher and guidance counselor of 31 years. Stephanie is a speech language pathologist (SLP). So you know you're getting top-notch information here. We're honored to have you two post this. Thank you!! - Tim]

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If someone has not yet given you a copy of your rights through IDEA (Individuals with Disabilities Education Act), ask for a copy, which they are required to give you. This is your bible and you should never attend an IEP meeting without it. Here is a link to download the most recent (2007) pdf format Resource Guide for Parents. Other IDEA highlights are noted throughout.

Although IDEA is federal, every state is required to have a Protection and Advocacy system. Check for yours at the national website at www.napas.org.

You have a right to see all the assessment results and meet with the assessor(s) BEFORE the first IEP meeting so you have time to absorb it and get questions ready.

Educators are famous for turning everything into acronyms (see IDEA above and many others below) and use them as if everyone knows what they all mean. If you don’t, ASK!! Every 5-8 years or so, all the “label names” are changed to more politically correct ones, so just as soon as you learn them, they’ll all change. Personally, I think they do this just to screw with us.

Follow your gut. If something sounds fishy or not quite right, it probably isn’t. Ask questions, make requests in writing to keep the IEP team accountable, and don’t take no for an answer the first time. You might even tape record the meeting to keep everyone on their toes. Some IEP teams will be pretty ticked off by this and there may be much eye-rolling. Smile and insist. Remember – they may be the education experts, but YOU are an expert on your kid!

If you request a particular service and are told it is not possible or that your child does not qualify for it, stand firm. Request the assessment for that supports the need for the service you request. If the results don’t jive with what you think your kid needs, you have the right to request an IEE (Independent Education Evaluation) provided at PUBLIC EXPENSE. Again, make that request in writing.

The primary goal of the IEP meeting is to place your kid in the Least Restrictive Environment (LRE). This is especially important if full or partial inclusion in a regular classroom is likely and/or desired. Optimally, full inclusion with modifications should be the initial goal, working back to more restrictive options as needed. MEASURABLE goals and objectives should be written BEFORE placement is determined. In fact, it should shape how placement is determined. Modifications can range from providing an aide to providing visual cues, speech therapy, etc.

As I read through this list, it struck me that most of these tips either hint or scream at an adversarial relationship with the school district. Let me hasten to point out that most school districts really do the right thing, really have your kid’s best interest at heart and are really there to help you. They have been through this process many, many times before, to the point where it sometimes seems rote or rubber stamped. You may only need to gently remind them that although this is their 1,648th IEP, it’s your first. Knowing your rights is your responsibility to your kid, nonetheless.

(This is Stephanie talking now-Gigi’s daughter, the SLP).

The only things I have to add is regarding the specific goals/objectives, etc. More than likely they will be written before the meeting. If you don’t agree, want to add more, etc, it may seem time consuming and you may need to meet again, but it is possible.

Also, you mentioned that you were concerned about how to make the skills that J-man is showing (i.e. naming letters, colors, etc) into functional goals for the IEP and how to generalize them to naming other items. I may be totally off on this, but I do believe this is fairly common with kids with autism. I think it has to do with the fact that letters, colors, numbers are considered “rote” naming or rote memory and that naming other objects is more of “labeling”. I can’t remember the reason behind it, but the teachers will probably be familiar with this type of learning and memory and will help to incorporate that into his goals. AND those skills are very functional for a pre-school classroom, so it should all go hand in hand.

About AAC devices (augmentative and assistive communication), I know that the IEP process is different in each state, however I do believe that every IEP has a section that asks about assistive communication evals, or have all appropriate evals be completed (may not specifically say AAC). You can have that sections checked and then they are required to do an AAC eval (separate from the typical speech eval, etc.

As far as the actual eval and devices, I would recommend that several devices be tried out with J-man before anything is chosen. There is a TON of different types, software, vocabulary that should be looked at to figure out which one would best suit him. I know that some companies will even rent them out to see if they work for a specific child. I know that this is a long process and you may get frustrated, but keep with it if it’s what you feel is best for him. PLEASE feel free to ask me any other questions!!

If you live in North Carolina (like we do), there’s a fantastic resource called Generations-Tadpole that a few people and a couple of therapists mentioned to me. We haven’t used it yet, but I’m sure we will.

The best way I can think of to describe them is like Netflix for assistive and augmentative technology. If you live in North Carolina, you can borrow something out of the ‘library’ for a couple of weeks, try it out, and then return it. The best news - unless I’m missing something (and I asked around and looked on their site) - is that for NC residents it doesn’t cost you a thing, not even for shipping. Of course, you actually have to return things on time.

Obviously, one of the main issues with assistive technology in general is that there’s no easy way to try it out without spending tons of money on something and likely being stuck with it if it doesn’t work for your child. This stuff is way expensive (makes me think I’m in the wrong line of work) and not something you try out on a whim usually. Our local Early Intervention office has a lending library of their own, which we’re going to try to use before our time in EI runs out soon. From what I gather, it gets a lot harder to get loaners from the preschool system just because their inventory is always checked out. At least that’s apparently the case in our county.

Our primary interest is in ‘augmentative communication’, or ways to help J-Man better communicate with us and others. They also have a bunch of other resources such as learning and literacy aids, devices to assist with daily living, loads of educational CDs and DVDs, computer software for kids, and more learning toys than you can shake a stick at. There’s a bunch of other stuff too.

After reviewing Tadpole’s inventory, I noticed one issue that our developmental therapist gave us a heads-up on - augmentative communication devices often talk for the child through pre-recorded phrases assigned to the buttons, so partially-verbal kids whose verbal skills are improving (even if very slowly) may derive little or no real benefit from these devices.

If an older child with a very limited spoken vocabulary needed to ask certain kinds of questions that they couldn’t sign or communicate non-verbally, provide certain responses to questions also not easily communicated non-verbally, or generally needed to interact in some fashion independently of someone who could ‘translate’, I could see the real value in this. If a child got lost and needed to say “My Mommy’s name is Jane. Her phone number is 555-3333,” then a programmable device like this could really help. Since some of them can also be reprogrammed or significantly customized, they are quite adaptable to different situations.

But that brings us back to the original problem. J-Man can point to a picture for a handful of things (mostly food), and often say something that approximates the name of that item while he’s touching the picture. This really helps clarify what he wants. The pictures are a stepping stone to expanded speech. They do stand in for the speech itself sometimes, but it feels like the available technology is largely on a different path right now from where we are. While it would be entertaining to get more complex things from him than ‘cup’ (just waiting for a recorded version of “Daddy, you smell like a baboon’s butt.”), it seems like digitized phrases aren’t yet a part of the path we’re on at the moment.

That said, the yes/no switches might be worth playing around with. I’m willing to play 20 Questions with him if it helps better narrow down what he wants (and assuming he gets the point of it), but I’m uncertain about how well that fits into our current plan. It’s free for us to try, so we’ll play around with their inventory to see what we see.

I think a gap in the range of these devices comes on the lower-tech end. A more portable, configurable, extensible picture system - without all the programmable recordings - would be a real benefit to us. I know a simple, small photo album works for some kids, but J-Man doesn’t seem ready to flip through something. He needs to see all of his choices at once. Given what I’ve seen, I may have to sit down and actually design one that works for him. It’ll give me an excuse to go to Lowe’s if nothing else.

If anyone knows of other lending resources, feel free to comment or e-mail us!

Given J-Man’s sudden proliferation of letter recognition and continued progress with picture communication, it looks like he may be a prime candidate for some sort of assistive technology device to help him communicate. While I’m a self-professed geek, I don’t know the first thing about what the technological possibilities are for him. I know a lot about designing web sites for people who use screen readers and otherwise creating accessible web sites, but I don’t know jack about what devices an almost-three-year-old could use to communicate.

Since his speech therapist seems to believe it’s likely he’ll have a hard time being understood for a long while even if he starts getting more words out, this is a path we need to consider.

So, this is where you come in. We’re looking for anything anyone knows about assistive technology for helping autistic toddlers communicate, or kids in general. Please leave a comment in this post or e-mail us privately and let us know your experience. We’d really appreciate it.

Here are some questions we have now. Obviously there’s stuff we haven’t thought of, so please feel free to stray from the questions and tell us everything you know.

• Have any of you used any sort of assistive technology devices to help your kids communicate? If so, what devices and how well did they work?
• Do you know of any good web sites that provide helpful and accurate info about this? (I looked up some stuff on Google real quick and the sites were either marginally informative or just broken links.)
• I have heard that it’s a requirement that assistive technology be discussed during the IEP process and a determination made about whether it’s appropriate for your child. If that’s correct, has anyone gotten their schools to cover this? If so, how hard was it? Did they approve something that was the equivalent of a 20-year-old laptop and you have to pay out of pocket for something that worked well?
• What’s a good way to get ‘loaners’ and try this stuff out before money gets shelled out for it?

Really, just tell us anything you know. We’d be most grateful. Thanks!