ASD

Far and away, the most popular post we’ve had is “What’s Your Autistic Toddler Like?” - the one that lists the specific autistic ‘traits’ or ’symptoms’ our son has and to what degree. After talking to other parents, the reason why that post is so popular is abundantly clear - parents are afraid and want to know for sure what’s going on. We know; we’ve been there.

With it coming out this past week that Britney Spears is concerned that her son is autistic, the awareness to the issue that brings makes it seem like a good time to cover some steps you should take if you are concerned that your child has autism. There are more than five, of course, but based on our experience, here are some good starting points people either suggested to us or that we wish they had in the midst of all of our confusion.

A few notes first:

1. We are by no means authorities on this subject. This is no substitute for professional advice and your own common sense and expertise about your own child.

2. I know we have some readers outside the U.S., but honestly I don’t have a clue how your local, state, and national governments provide services. Some of this will still apply to you regardless. We’d love input from our readers in other countries.

3. This is primarily geared toward parents whose kids are under age 3.

OK, on with the list.

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(Chock full of video goodness!)

“Swifter, Higher, Stronger” is the Olympic motto. It is natural, even if somewhat misguided, to take that to mean that those who go farther or faster than anyone else are our greatest heroes. While Michael Phelps is just freakish in his athletic ability and I would celebrate him getting eight gold medals if that happens, after I would move on. No offense, Michael. Though I probably will go bat crazy if Dara Torres wins gold.

There are some people who have to stare down the most daunting of choices about whether to try to overcome impossible odds or to accept something less. They aren’t the best at what they do, but they represent the best of who we are as human beings. Either for one moment or over an entire lifetime, they do something that inspires us. Through their example, we learn about hope and commitment.

Because of their choices and their determination, there are many athletes who have touched something fundamental in our souls. I could name many more than the ones I mention below, but here are some that really stick out to me.

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Tuesday we tried something with J-Man’s OT called “Therapeutic Listening” (officially, it’s a trademarked term by somebody). You may have come across this under terms like ‘auditory therapy’, ‘auditory training’, ‘listening therapy’, and a host of other terms. I don’t understand how all this works very well at all, and there are different approaches to make things more complicated in learning about it. Here are some sites that give you an overview. I’d suggest reading them in this order: Vital Links (about Therapeutic Listening ®), Tomatis, Berard AIT, and Samonas (whose website layout is a mess, but that’s another matter).

From what I gather, the above methods vary some from one to the other. The following describes what we did for Therapeutic Listening on Tuesday. Any similarities between my description and the actual science and technical bases for any of these methods may be pure luck on my part. Like I said, this is new to me. It’s the end result that left me astonished, and plenty fascinated to learn more about this.

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As you transition from Early Intervention to your county school system’s services and preschool programs, there comes a time when you have to subject your child to a bunch of evaluations in order to determine his or her eligibility for services. Yesterday was our turn.

I should preface all this by saying that this sounds like things are worse than they really are, though there have been a number of issues to be sure. We’ve been frustrated, and that’s been made worse by us just being plain exhausted lately.

We haven’t exactly made it a secret that we haven’t been particularly enjoying this process. Early Intervention was a lot more laid back for us. One thing we’ve learned is that getting specifics from anyone in the IEP development process is a chore. (link to Wikipedia for those who don’t know what this is) There’s a straightforward enough explanation for this. Anything they say could be used against them at a later date if a child doesn’t get the services the parent wants. However, when all that butt covering gets in the way of actually getting any real information about what is going on, I don’t give a rodent’s posterior about one’s need to keep one’s legal issues covered.

So we’ve had to push back - not hard, but we’ve been firm about some things. Reading the tea leaves, it appears that our concerns were escalated to the next level up. This has led to a lot more clarity (at least on our part) and a sense that we’re all on more equal footing, which is how it’s supposed to be.

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For reasons none of us really understand, J-Man has been totally freaking out about stairs of late. He used to go up and down with little help and no worries. He’d hold on to the rail with both hands or with one hand on the rail and the other on us, but he’d do it without any real issues. We have fairly steep steps to the upstairs of our house, and he climbed them without much problem beyond being a little wobbly about it.

Then out of the blue about a week ago, he started melting down whenever we wanted him to go up or down stairs. The two steps to our garage remained doable even if not a calm experience, but anything from the four or five stairs at preschool to the dozen steps to our upstairs might as well have been Everest or jumping out of an airplane. We still can’t figure out why.

At first we wondered if it was just a cranky, almost three-year-old, stubbornness thing, but his behavior is more of terror than just being a toddler. We constantly have to read the behavioral tea leaves because he’s not really verbal. I think we’re right in saying that something is way off inside him.

We talked at length to his occupational therapist about whether something sensorially was short circuiting in him. He has been very sensory-seeking lately, which is usually a sign something is up. He’s been burrowing under pillows, us, or anything else that he can wedge himself in. He’s been rubbing his head on the carpet and doing his downward-facing dog yoga thing he came up with on his own. (He’s insanely flexible.) He’s also way more into his brushing (best picture I could find) than he’s ever been.

We think he also could be having sinus problems that are throwing off his sense of balance (vestibular), which has always been a struggle for him. I don’t know.

This has been a really depressing setback for us. It’s the age-old struggle of when do you ‘give in’ and when do you stick it out regardless of how long it takes. There will be setbacks, but there’s also a sense that ‘lost’ skills take forever to reclaim. With an autistic toddler, ‘giving in’ is a very complex concept. In the midst of a massive meltdown, persistence isn’t necessarily a virtue. Taking a hard line and getting results assumes a level of understanding in your child that isn’t always there in the middle of one of these meltdowns, or in some cases isn’t there in general.

Last night we tried the ‘you’re going to do go down these steps regardless, but we’ll try to make it less stressful’ method. We had once before managed to entice him to take a few steps by using a couple of his favorite wooden blocks as a carrot. That didn’t work last night, but I read him his favorite book while he was on the steps and he slowly worked his way toward me. It took like 10 minutes to cover 12 steps, but it’s better than it has been. I’m not above trying to use carrots and distractions if it means he still accomplishes the goal. A win is a win.

We don’t always know why they do what they do, so you just keep trying the best you can. It’s like playing 20 Questions (or 100 Questions) many days, but you just keep at it. I tried shouting “I think I can!” at him on the steps. I guess that’s worth saying to myself as well.

I came across what may be the best web tool to come out in a long time.

A handful of Internet saints invented StupidFilter, open-source filter software that you’ll be able to use in blogs, community sites, or wherever to filter out stupidity in things like comments. I’m serious.

So as a test, I went to their demo and plugged in Michael Savage’s profane statement, “It’s a brat who hasn’t been told to cut the act out. That’s what autism is.”

StupidFilter’s analysis?

“Text is likely to be stupid.”

Well, I think that settles it.

Now go read my other post and contact his sponsors. Thanks!

Sometimes the best way to deal with a bully is to ignore them. This is not one of those times. Clearly the need for autism awareness is as important as ever.

While I have a tendency toward hyperbole, I doubt I’m overstating things when I express my opinion that the properly-named, rant-show host Michael Savage is an idiot of epic proportions. (If you need to catch up on how Michael Savage has added autism to his long list of prejudices, you can go to here, here, and here.)

It seems to be his goal to constantly up the ante in nutjob-dom, I guess when people’s attention to his on-air tantrums wanes - that or whenever Ann Coulter gets too popular and his book sales go down. Perhaps he’s trying to establish a new international standard for a unit of measurement for base prickery. I don’t know, nor do I care.

I see no need to elaborate on why this guy is a complete dillweed. If that’s not abundantly clear to someone at this point, that person is too far gone for me to say anything to help that.

What I do want to do here is invite you to contact his sponsors and share your opinions about this. If you are a customer of any of them, be sure to note this in your e-mail or letter. Better yet, send them a picture of your child if you’re comfortable with that. Let them see the faces of autism and how wonderful they are.

The Autistic Self Advocacy Network (ASAN) has a list up of his sponsors. Also, if you scroll down a ways in this blog post, you’ll see another list someone compiled based on what aired during a particular episode.

These lists differ a lot, so keep an eye on that. Because campaigns like this tend to be fluid, try to verify the sponsorship status of the company you are contacting before you hit Send. ASAN may be one of your best bets for keeping up with this.

I’ve worked enough in marketing issues to know that sometimes companies’ ads air during a show because they bought a bulk lot of ad space with a media outlet, which could cover a lot of networks and a range of possible time slots, and they aren’t always aware that it aired during a particular show. Not to mention, marketing departments within larger companies may be the ones making the buys for particular slots and markets and the higher-ups don’t always know it.

Consider this a teachable moment for them. Saying that 1) you’ve become aware that they’re advertising on Savage’s show, 2) as a customer, you are very concerned, and 3) you want to give them the opportunity to renounce this and pull their advertising, gives them the benefit of the doubt, assuming they still merit it. These tend to work better than going straight to flaming, at least in my experience. If they don’t pull out and you pull your business from them, give them concrete evidence of it (like proof of how much you used to spend there).

Also, some sponsors have pulled out already, so be sure to thank them. It’s good to switch to thank you notes as soon as they do the right thing.

Media Matters also has a way to contact stations that carry his show. The network carrying his show - Talk Radio Network - has been given ample opportunity to do the right thing, and they have not. They think by offering token slots for PSAs they can sweep this whole thing under the rug. He did nothing to ‘clarify’ his comments except equivocate, go through the motions, and then go back to being the same jerk about it. Tell them what you think about that (info@talkradionetwork.com).

To Michael Savage, I have a few comments:

1. I do congratulate you on one thing. You’ve managed to unify every facet of all the communities affected by and doing work related to autism, which is nigh on impossible these days.

2. Just because your father called you a fool and a variety of other names, don’t project your issues on to the rest of us. If you have parent issues, get help or just keep them to yourself. Certainly don’t blame us for it. You talk so much about personal responsibility; go practice what you screech.

3. Go sit in timeout, like for forever.

4. If you want to call my autistic son a ‘brat’, I dare you to come to my house and say it to my face. I’ll leave the light on for you.

I’m one of the first people to encourage other parents to chuck the milestones books out the window. The ones that tell you what your child should be doing at 75.34 weeks to me do little except make you increase your antacid budget every month. The obvious exception to this is that if you suspect that your child is very delayed in one or more areas, go figure that out both through reading and with your pediatrician and other professionals. There’s a big difference between being 1.8 weeks behind and 18 months behind.

This is probably a blinding flash of the obvious for parents of kids with delays, but after a few months in Early Intervention and therapies and whatnot, you completely lose touch with what ‘developmentally normal’ is. It really is a time warp. At this point, I would have a hard time telling you how far behind our son is. We’re doing things on J-Man Daylight Time and ignoring how most of the rest of the planet tells time. He’ll do it when he does it, has become our motto (at least on our good days).

With J-Man showing some exceptional skills in some areas in the midst of being very delayed on most everything else, we’ve felt the need to go back and figure out what ‘normal’ is for an almost-three-year-old. At a parenting level, I’m not sure how much I’m concerned about this at this point. Like I said, he’ll get there when he gets there, at least I keep telling myself that. However, for purposes of getting him into preschool and doing his IEP, we need to get some handle on where he is (that Present Levels of Performance thing - with the wonderful acronym PLOP).

It’s hard to find to milestones charts that translate well into autism-ese. The obvious problem is that your autistic toddler could easily be two or more years plus or minus what is developmentally ‘normal’ for a three-year-old on these charts. He or she will likely be scattered all over the chart. You have to transpose quite a bit with them, but after thinking through it a bit, I still could get a rough idea.

At the bottom of this post are some links I found to help us get started. Hopefully they’re useful to you as well. I can’t vouch for their complete accuracy or anything, but they’re consistent enough with each other for what I was looking for.

I did discover that J-Man’s letter identification is probably on par with a level of 4-5 years old (he’ll be 3 in a couple of months if you just got here), just minus the ability to say some of them. If he’s in a relaxed state, he can point to any letter you ask for. Lowercase still confuses him for a good half of the letters, but that’s understandable. He’s getting there with numbers and has consistently identified five colors (again, when he’s in a relaxed state). With colors, I usually give him three to choose from (solid-color, construction paper squares) and ask him to point to ‘red’ or whatever. If he goes 10/10, he’ll get the proverbial gold star and we’ll start trying to identify colors in other contexts.

[Worth nothing that if you say something like "point to the green frog" he just stares at the floor. Combining a color and an object - 'green frog' - is too much to sort through as he has to figure out what's green and what's a frog at the same time. So, we just do "point to green" at this point.]

The key is the ‘relaxed state’. If he’s calm, he can do this stuff one to two years beyond age level. Otherwise, it’s a lost cause. Hitting that sweet spot is hard, which is as much the battle as anything. This is totally a sensory processing issue, which we’re working on constantly.

OK, enough of my rambling on. Here are the links I stumbled on. These center on speech, language, and literacy milestones. If you know of others, let us know.

http://www.capitolent.net/speech-milestones.htm

http://www.horizonspeechcenter.com/milestones.html

http://www.madison.k12.wi.us/tnl/lilm/early_literacy/preschool/milestones3-5.html

http://www.childcarelounge.com/articles/xlearningleteracy.htm

The J-man and I were at my parents’ house this weekend. You may not have heard my sigh of relief when I parked the car in the garage on Sunday evening. I’m sure it only echoed through three or four states.

Besides the lack of sleep for both the J-man and me, there were the “gentle” reminders that people like Jenny McCarthy get a lot of press. Had I heard of her? Didn’t I think it was great that she was telling the world about the cure for autism? How sad was I that we had the J-man vaccinated, and that was what caused his autism? Did I feel guilty? Why weren’t we trying to cure the J-man’s autism? Heck, all it takes is some supplements. Don’t we care enough to spend that kind of money on a sure thing?

Yeah, that part was fun.

Other than that, it was a pretty good time. The J-man charmed everyone, including all the new people we met. (Yes, my family is so big that there are reasonably close relatives that I haven’t met before.) For people who are Southern Baptist, there was a goodly amount of alcohol consumption going on. Funny thing is, I’m not religious, and I’m the one who doesn’t drink.

There was a LOT of really good food, which I didn’t have to cook, which makes it even better. There were some really lovely people I hadn’t seen in a long time, and I met some other really lovely people for the first time. They were all impressed with my hometown, because “everybody knows everybody else.”

EXACTLY. One of the many reasons I left.

[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!!

I stumbled across an online store that sells printer toner and ink and then donates 5% of every sale to organizations that support research and issues related to autism. It goes by the straightforward name Toner for Autism.

There’s been some confusion in the autistiblogosphere (I made that up) about where their money goes, but by the accounts I’ve read, this store seems legit and the prices are certainly competitive. Given the personal stake one of the founders has in this since his daughter is autistic, there’s great promise here, and I appreciate their goal of raising at least $1 million.

With most anything like this, people are right to wonder what charities they might be supporting with their shopping. Their site didn’t seem particularly forthcoming with that information. So I thought I’d put this out there and see if anyone else knew.

I’ve taken a couple of days off (off by my standards at least) from the computer for mental health reasons. Once I get caught up, I’ll contact them and see. In the meantime, if anyone knows more about them or has bought from them, I’d love to hear your experience. I’d like to be able to recommend them, but always want to make sure and vet these things first.

Also, if you know of other businesses who donate percentages of sales to autism charities, we’d love to hear about them.

In one of those make-my-day moments, during speech therapy J-Man actually fed a bear with an empty spoon after ‘dipping’ the spoon in an empty bowl. So nothing in the bowl or on the spoon, and - shocking newsflash - stuffed bears don’t eat! It’s an abstract, non-literal event! And this is a kid with all manner of feeding issues who is distrustful of most all things culinary. But with some encouragement and direction, he figured out he could pretend to feed the bear without there needing to be literal feeding going on, and he thought it was fun!

If there was one part of the autism evaluation that he basically scored close to zero on, it was pretend play.

He’s never done this before. So….

We now interrupt this news flash for a freak out.

OMG OMG OMG OMG OMG OMG!!!

W00t! Huzzah! Yay!

We now return you to our regular programming.

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Today’s new conversation:

“Who’s the man?”

“I-I muh-muh!” (I’m the man!)

The little bits of grace that sneak up on you. The little cures for what ails ya.

blowing stuff up!

You can’t get much more American than exploding things in your driveway. OK, well, you obviously can, and it was just weenie fireworks from the store. But we had no idea how he would react to stuff combusting in front of our house, so we skipped the rockets red glare and went for things that popped and crackled and smelled like Beelzebub’s armpits. Yeah, we know it’s daytime too. There was no way he was making it until dark.

To our joy, he really liked them. We even got “more” and the sign for “more” out of him! Yay!

Next year, more firepower!!

Anyway, enjoy the cute video. (It’s short.) And thanks to Uncle Jason for filming while I was trying not to catch myself on fire!

J-Man has rarely been one to get fixated on an object and carry it everywhere. Glo-Worm and the music-playing caterpillar used to go with us in the car and to some degree around the house. The music calmed him down and made life better for everyone. Even then, they weren’t with him all day.

Yesterday during speech therapy, he was impressing the therapist with his ability to point to a particular letter on a block even when presented with several blocks to choose from. For good measure, he often said the letter. It’s hard to describe what a quantum leap forward this is for him. If you present him objects (ball, cow, book, for example) and ask him to point to the cow, it’s rare for him to do it. Give him a pile of letter flash cards and say, “point to the ‘A’,” he’ll point and get it right about 90+% of the time. I’ve got no idea either. The speech therapist was floored.

He particularly likes ‘K’ since it’s the one sound he’s been able to make consistently. Oddly enough, it’s one of the hardest sounds to make. One of the hardest for him is that B/P type sound - he almost never can - which is apparently about the easiest sound to make. It comes out this curious, guttural, glottal, whatever sound. In any case, he found the ‘K’ block and held on to it the whole session. He also decided he liked the ‘C’ block and held it in the other hand. So, with a block in each hand, he would ‘point’ his fist at whatever she was asking him to.

He held on to them throughout the therapy, which started about 9:00AM. He then kept carrying them… and carrying them… We went to Target about 10:30, and he carried them to the car. He carried them into the store, and in the shopping cart, and back out to the car, and back home, and climbing up and down the steps. He held on to them through lunch (both in one hand), eating with the other hand. We managed to pry them from his hands (to much unhappiness) while he ‘napped’ (ha!). When he got up, he grabbed the blocks again and carried them around through the whole afternoon and dinner and up to the bathtub, where we had to pry them out again (to much more unhappiness).

Finally I just hid them. Today, he hasn’t looked for them.

I have no idea why, but yesterday was Block Day. I’ve never seen him carry something around for the better part of 10 hours. Go figure.

Who said all this wasn’t interesting?