[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]

———————————–

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!!

Pepaw (Tim’s dad) came over today to play with the J-man… oh, and to help Tim clean out the gutters. By help I mean, Pepaw held the ladder. Thank goodness!

For some reason, the J-man picks the days that Pepaw is here to learn a new and exciting skill. Today, it was how to spell his name. Yes, it’s difficult for him to say some of the letters, but Pepaw spelled it out with flash cards, and had the J-man read them over and over. Then, Pepaw would ask how to spell J-man. Little Man would say “guh-guh”-”mah-mah”-”aah-aah”-”eh-eh.” That’s right, he would spell out his name. Yes, of course he spelled out his own name and not “J-man.” Why do you ask?

Brilliant child. Of course he is.

Right now he is NOT napping, which I’m not going to fight, since last night he went to sleep at 11:15 (after napping for 2 1/2 hours yesterday). That meant I went to sleep after midnight. He seems to feel better today - yesterday was spent moaning pretty consistently through the day. Poor monkey. Hoping the peaches and prunes Tim picked up will help Little Man’s tummy feel better SOON!

And now, I have the Jello song stuck in my head. Dang it!

And now something that should make upcoming evaluations even more interesting…

Apparently, J-Man can identify a handful of colors too. One of our new learning-at-home activities is to do “Point to ____” and give him multiple choices, then repeat that 10 times. We’ve started keeping a notebook and recording how he does.

His progress at identifying letters has improved astronomically. Presented with three choices, he got 30 in a row correct. (Correct = pointed to the correct letter. If it’s one he could say, he almost always said it too.) Let that sink in a second, then keep going.

Each time I would remove the flash cards from his sight, jumble them up, put them back in front of him, and repeat. I would swap in different letters (we didn’t use the same three 30 times or anything) and ask him to identify different letters (didn’t ask him to pick ‘J’ each time, for example, probably did 10 different letters by the end). He still got 30 in a row right. He might have kept the streak going but he declared he was done by getting up and running away.

We haven’t really practiced numbers much, but for giggles we tried that today more formally for the first time. He was fixated on the ‘8′ so I had a hard time getting him to play along, but he did get 4 out of 5 right before taking the ‘8′ card and wandering off.

Interesting tidbit - he still won’t do this with objects. Give him the choice between a book and a ball, ask him to point to the book - more often than not, nada.

So, of course, what’s the next thing to try? Colors!

I started with two choices - green and red. I asked him for green 5 times and red 5 times. (I know that’s not exactly orthodox method, but I was experimenting.) Each time I removed the cards (solid, one-color, construction paper squares we laminated) from his sight and brought them back, trying to randomize the order as best you can with two cards. He didn’t do so hot. Just 4/10. At first, everything he choose was the card on his right. Toward the end, he kept picking green regardless of what I asked for. Was this confusion or him being a stinker (he had that look on his face). Who knows? I made my notes and tried again.

This time I did red and yellow 10 times and asked him to pick yellow each time. Same deal - put the cards in front of him, asked him to point to yellow, took the cards away, brought them back, tried to randomize the order. He picked yellow 10 times out of 10 and never hesitated once in picking it. Dude.

So I tried again with blue and green, asking for green 10 times. Same process as before. He picked green six times (once with his foot), both of them three times (once with both feet), and refused to pick one time. His accuracy went downhill fast; most of what he got correct was toward the beginning. This was an indicator that he was really tired of this game. Still being ticked off and getting 6/10 wasn’t bad.

I wasn’t entirely sure what to make of this, and still won’t until we do colors some more. While I was pondering this, he grabbed the yellow square some time later and said ‘ell-oh’, which totally wigged me out.

Actually there was one more thing to try. His new developmental therapist asked me whether he could identify letters within words (like the ‘a’ in ‘balloon’). I didn’t know. Great question. I hadn’t really tried it. So I tried a couple. We did the ‘e’ in ’sheriff’ (it’s on a little mat in his classroom) and the ‘o’ in ‘cow’ on a flash card. It took him a while, but he did it. Clearly that was a lot harder for him, and I couldn’t really hold his attention to it for more than those two words. Still, darn impressive.

Before I get effusively proud in this post (which I am), I’ll move on. All this got me thinking about future evals. Apparently some of these newly-discovered abilities could be 1-2 years developmentally AHEAD of where he is age-wise, depending on how far and deep and consistent they are. It’s really hard to tell right now as we don’t honestly know what’s going on in his toddler brain, what he’s understanding, and what he’s trying to communicate - problems we’ve had for forever. All that while some of his abilities are pretty clearly 1 to maybe 2 years behind. As long as the schools don’t average all that out and get “he’s functioning at age level”, we’ll be fine. But it should make for some interesting scoring and reporting for the upcoming IEP.

Our speech therapist is going to do another eval of him of her own next week and tell us what she thinks about where he is communication-wise. Her informal opinion at this point is on the order of astonishment. Apparently, this isn’t a situation that happens often at all. A county evaluator who didn’t know him and all this stuff he’s been showing would get a very different picture over the course of the whole, whopping hour they can spend with kids. Since our speech therapist has worked with him for months, hopefully she can give a more accurate picture. We’ll see what that yields. I’m not sure how you decipher the kind of puzzle this is turning into.

Let’s just say, things have gotten a lot more interesting around here. Every day is an even bigger revelation than it was, and that’s saying something.

Today I heard the J-man count to 10! Yes, 1-7 were mostly “cuh-cuh” but when Tim got to 7 and the J-man said “ayyyy” and then Tim repeated “eight,” and the J-man said “niii” I just about wet myself.

Not that I knew this the other day when I was grousing about the whole incorrect minutes from our meeting with the county…

Maybe we should teach him to count in some other language where 1-7 don’t begin with letters he can’t say. Uncle Jason?

Recently we have been laminating fools over here in the Flashlight household. The J-man has really been into his alphabet flashcards, so we decided to laminate them before he completely shredded them. While we were at it, we (OK, Tim) laminated eleventy-seven pictures of things for the J-man to do. Some were therapy related (the desk, etc), and some were fun/reward kind of things (the swing, the computer game). Tim posted them on a piece of posterboard using velcro dots, just like we did with the food pictures. That posterboard is now hanging in the kitchen, right at the door to the classroom. We haven’t introduced it at all, though. We haven’t even pointed it out.

I was bustling around the kitchen cleaning up and making dinner, and the J-man was running around doing his thing, when he came up to me with the picture of the computer game in his hand. I’m not sure if he had been pointing at it before, but he made SURE I knew he wanted to play with it. What could I do but set him up to play? Besides, it let me cook dinner without worrying about him being near the stove. SCORE!

Estee over at The Joy of Autism blogged today about knowing her son knows much more than he can verbalize. Seeing the J-man carry over his knowledge about how the food board works to the actions board reinforced our belief that he knows SO MUCH MORE than he can say. If he’s anything like his daddy, he’s going to be crazy smart, and it looks like he’s heading in that direction.

Also… we cut his hair again tonight. It was not NEARLY as easy as the last time. Sigh. Poor monkey. He didn’t even want to be near me afterward. Talk about your Mama Guilt!

The J-man has a new and exciting talent - the ability to say a whole phrase. That phrase? “My name is ‘J-man’!”

It goes like this:
Mama: My
J-man: muh-muh
J-man: na-na
Mama: name
J-man: i-i
Mama: is
J-man: na-na!
Mama: ‘J-man’!

[We assume you know that neither 'na-na' nor 'J-Man' is his name, and in both instances he and Mary got his name right. ]

He’s getting so big, and it seems like it’s all of a sudden. We had to switch to Good Nites instead of the Huggies Overnights because he outgrew the size 5s in what seemed like a week. He’s wearing “big boy shoes” every day now, and thankfully the Preschoolians came in, because the other shoes were getting harder and harder to put on. He’s VERY clear about what food/drink he wants now, and will go over and BANG on the picture if he thinks you are ignoring him. Tonight was the best stair-climbing he’s ever done, with very little leaning on me.

In terms of communication, it seems like a lightbulb went on over his head. Now he gets that if he makes the sound, he gets what he’s asking for. He’s so proud of himself - now he runs around and bangs on his belly and yells.

My little boy is growing up, right before my eyes.