“Green is the prime color of the world, and that from which its loveliness arises.” — Pedro Calderon de la Barca

Sorry to be light on posting the last few days. We’ve all been feeling under it this week. I’m also working on a few improvements to the blog, which I’ll hopefully get done this weekend along with some posting.

In the meantime, here’s another achievement to celebrate! Even though J-Man has felt bad all week, had all sorts of weird sleep patterns, and has decided that this would be a nice time to assume the role of terrible-almost-threes-tantrum-monster, we did have a big positive. He decided to color!!

To make a long back story short, he has never enjoyed using crayons because of his sensory issues and fine motor control problems. It seems like he can’t figure out how to use the crayon, it somehow feels icky in his hand, or both. He tends to hold slender objects (like spoons, crayons, pens, etc.) at the very end with as little finger skin as he can get away with. (see first picture below) This obviously makes it very hard for him to self-feed from a spoon.

I had him ’sign’ a birthday card for my sister the other day with a crayon. Usually if we get a couple of dots and a random line, we’re happy. Even that takes a lot of effort usually. This time, he kept running the crayon back and forth and I had to take it from him so she could still read the card.

Night before last, he took one of his bathtub crayons (easy clean-up!) - very specifically the green one - and colored the edge of the tub for a good ten minutes. He has NEVER done this. He even held it some of the time in a ‘normal’ writing grasp (see second picture). Woo hoo!

After a couple of years of occupational therapy, we have coloring! On the one hand, I guess that could be depressing. But every victory is hard fought, and you gladly take every one of them regardless of cost. As you can tell in the last picture, he’s so proud of himself. That makes EVERYTHING worth it.

[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!!

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.