Technology

Steve Jobs and What to Give a $@!+ About

by Tim on October 7, 2011

I hadn’t intended to note the passing of Steve Jobs here, however as I thought about it, there are a couple of things that I believe are worth noting for parents and caregivers of children with autism.

Jobs and the creatives at Apple – quite accidentally – gave us an amazing array of new tools to address many of the challenges that come with autism. Single-handedly, Jobs and Apple rendered most of the infinitely-overpriced, clunky communication devices obsolete in two fell swoops with the iPod Touch and the iPad. While many companies who shall remain nameless are still charging $8,000+ for communication devices – which not-so-coincidentally has something to do with the limit of what Medicaid will reimburse for them – they are quickly being sent off into the corner where they belong by iDevices that cost a tenth as much but do significantly more than most of these inferior, price-gouged devices. Apple created the technology that is ushering in the end of that profane nonsense. [end soapbox]

In addition, they have provided us with endlessly extensible, multi-sensory, portable tools for education that are improving the way our children learn. They have given technology to the people, the application developers have jumped at the opportunity, and that has opened up untold possibilities to change the lives of children and their families.

But there’s a more important and personal point I want to make here. So many want to understand why he was such a genius and then figure out how to emulate him. You could copy him right down to the black turtleneck and mannerisms and not succeed at this for reasons I hope should be obvious. You can’t be anyone else; you can only be you. And the goal is to be the best you possible, something Jobs understood from the beginning.

Of the myriad articles about him, a particular one caught my eye because of one sentence. John Gruber at Daring Fireball is one of the most insightful tech bloggers anywhere. In his post in which he shared a particular memory of Steve Jobs, Gruber zeroes in on a specific ability Jobs developed throughout his life that I hadn’t thought about before. He says, “One of Jobs’s many gifts was that he knew what to give a shit about.”

I want to be able to do that. This may be my new life ambition.

Jobs was able to devote himself utterly and completely to what was most important to him because he ignored everything else that wasn’t. He refused to be dragged into trivial things that didn’t advance the ideas and products he was passionate about.

He once said, “The only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle.” We may think we have to settle as parents because of the constraints we believe our lives and responsibilities have placed on us, but I refuse to believe that even though I often despair not knowing how to live differently. But it comes back to that phrase I first heard from a beloved mentor of mine many years ago: “Never settle. If you remember nothing else I’ve taught you, remember that.”

Jobs also said, “We’re here to put a dent in the universe. Otherwise why else even be here?” I know you and I feel like many – or most – days we’re just trying to survive the period of time between when we wake up and when we finally get to put our head on something soft again. The difference between my belief that we can somehow live out our vision for our lives and the hard reality of the everyday creates a painful tension we live with each day, but I refuse to surrender the hope that there’s a better way.

His mission statement for life included a combination of “do epic stuff”, “do what you love”, “never settle”, and “leave dents in the universe.” If something didn’t fit in with that, Jobs gave no time or attention to it.

For us as parents of autistic children, this is one of the lessons we most need to learn. Every day, we are crushed by endless little details. By the end of the day, we look back and realize we have no idea what we accomplished that day. And this happens day in and day out. Our lives are buried under massive debris piles of things we want to do but that remain untouched, undone, and deferred until some future we fear may never come. All this does is add to our frustration and depression.

We, too, want to do epic stuff and leave a dent in the universe. We want to do something to change the world – or at least the autistic parts of it – but if you’re like me, you feel like you spend most days just treading water or forestalling your ultimate drowning.

There has to be a better way. There have to be clues about how to change the way we pour ourselves into our daily lives such that we can make a lasting mark on the universe. We often think that if we could just push ourselves harder and do more that would solve the problem. When we are more rational, however, we know better. We’re already pushing ourselves to the brink. We are only given so much energy. We have to decide what we’re going to do with it, and we have to do so with great care.

And this is where I think Jobs’s genius comes in. It’s not like he had some unlimited store of energy. He was finite, and the number of years he had on this earth were less than most of us will have. He just refused to give his precious store of energy to crap that didn’t matter.

I spent half the morning yesterday giving emotional energy to a bureaucratic issue with some paperwork for the J-Man. The solution was simple: sign the damn thing, say whatever else needed to be said, and move on with the day. If other people felt the need to expend a lot of emotional whatever about it, fine. That didn’t need to be my problem, but I made it partly mine. I chewed on it like an old bone. None of that was necessary. I was stewing over it instead of trying to focus on doing something far greater with my life.

And we all do this, all day long. We need to be aware that we do it and then focus on taking steps to stop. Decide every day what the most important thing we want to do that day is, then do it. All this other trivial stuff be damned. If other people want to make some petty thing more than it is, let them. You can’t stop them from doing it, but you don’t have to participate. Jobs gave not a whit about convention, politics, politeness, or social niceties. Your work is to focus on what is most essential to who you are, then be ruthless about it.

Here’s something I’m going to try. List everything you’re stressed about. Then look at each one and ask, If I don’t deal with this right now or at least today, is anyone going to, 1) die, 2) take my house, or 3) suffer irreparable emotional or physical harm? Almost nothing reaches this threshold. Many of these things are simply items you and I need to act on in some way, but not in a way that gives them any more of our emotions or energy than they deserve. Do them as they need to be done, then move on.

Then list what’s most important to you. These can be personal values, goals, projects you want to work on, etc. If you’ve ever created a bucket list, then feel free to incorporate that. I’m thinking more of starting with a list of what’s most important to me in the immediate term, but you certainly will want to develop a longer-horizon view of what’s important, too. Choose some things on the list you really feel drawn to right now, then list a few specific actions you can take to get moving on them. Then start moving.

Stupid things that don’t deserve our stress suck up many times as much energy as is required to actually address them. Worrying about other people’s emotional debris as part of it multiplies the energy sucking manyfold. However, when we are working toward what’s closest to our hearts, our own energy multiplies. Do what we love and make a difference. This should be our ultimate aim in life.

Easier said than done, I know. Believe me, I am a master of not following my own words. This isn’t so much an end but a practice – a call to trying to live a better way – lining up one action after another until something amazing comes to life. Our kids do this every day, learning and developing inch by inch until they reveal something wonderful that was previously hidden from view. They already know how. Now it’s our turn to live it.

I think this will be one of Steve Jobs’s enduring legacies: To become the person we want to be we have to commit, act, devote ourselves to this every day, and never quit on our vision. If we fail on any given day, we fail. We get up, put it behind us, move on, and try again. Eventually, wonders will come to life.

What is your vision for your life? What are you going to do to make it happen? What are you going to do right this very second? Go.

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” – Steve Jobs (1955-2011)

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I still haven’t found the app I’m looking for

by Tim on September 6, 2010

There are now three of us at school who are iPod Touch addicts when it comes to frantically searching for an app that will help free us at least to some extent from the mountain of little picture cards, strips, and communication boards strewn all over our house and car. It’s either that or you never seem to have the ones you need with you in a particular situation. There are numerous great iPod/Phone/Pad apps out there now for picture communication, and my two iPod friends have indeed found a couple they really like. I was certainly impressed with them, too. There’s a lot of creative work going on out there in app developer land.

But here at Chez Flashlight, we have what at first seems like a minor issue, but in the realm of iPod and iPhone communication apps it quickly becomes a much more daunting one. Because the J-Man likes written words and can read many of them, he does remarkably well with pictures as long as they are labeled, and usually the bigger the label the better. We’ve even worked him toward schedule strips with small picture icons and larger written-out words. (See below.) Our more traditional looking picture squares get larger and larger word labels as time goes on. The problem? The iPod and iPhone apps we found so far focus on the picture and much less on the word label.

Schedule Strips

Schedule Strips

Schedule Strips

[Examples of picture strip-based schedules. Follow it like a list. Compare with his aging food choice card below and notice that the pictures above are now just icons with large word labels (or large words with little icon labels). Obviously we now have a zillion disorganized strips that seem to multiply like rabbits in the house.]

food-card.jpg

[J-Man's food choice card that he's been using forever.]

For the most part, this has been a good ‘problem’ to have. We are all convinced, however, that he has hyperlexia. Hyperlexia is where a child has reading abilities beyond or well beyond age level and often a strong fascination with letters and numbers, but it’s often accompanied by significant difficulties understanding speech. Indications also are that while being able to read at a high level, the child may not actually comprehend much of what he/she is reading. It’s thought that a noticeable percentage of autistic children are hyperlexic, and there’s a theory that children with hyperlexia are usually on the spectrum somewhere. There are cases when, for example, you ask the J-Man to point to a ‘butterfly’ in a book that he points to the word and not the picture. This can make teaching what the word means and how to generalize it more challenging, but we can work with that. The good news is that we believe we can leverage his reading strengths to help him compensate for his verbal communication challenges.

The issue is that so many picture communication tools for his age assume that there’s not much in the way of reading skills there yet, or at least that those skills are secondary to picture recognition. And really, this isn’t unreasonable. The assumption – I think – behind most of the current iPod/iPhone/iPad apps is that the child is picture-visual rather than word-visual (written words are still visual), will become more and more verbal, and between that and pictures will be able to communicate their needs. The problem is, what do you do when the child over time still only minimally talks or doesn’t talk at all, their needs become more and more complex, and you just don’t have enough pictures to capture it all?

Maybe it’s just me and my limited abilities to grasp what to do here, but as the things he wants to communicate become more abstract and nuanced, pictures alone just have a very hard time overcoming a communication barrier with a more verbal world or at least with parents who are struggling to learn a language that best suits him. I know it’s possible to develop a picture-based, visual language, but we have to be able to understand what a visual means to him and he has to be able to get his point across. We have to find someplace to meet in there at least until we build a foundation to work from.

Obviously, this is a complex issue that we can’t do more than scratch the surface of in one post. The main reason I bring this up is that I want to find an app that meets his needs, and I haven’t found it yet. Apps are so expensive, few of them have trial versions, and $35-$200 is a lot to pay just to try something out. There are some very cleverly done apps out there that I’ve tried, and I’ve dabbled with a lot of them, but all of them I’ve looked at focus mostly on pictures and put text as secondary. An app that put pictures and text on more equal footing might get us somewhere. Maybe something like that would address the needs of kids like our J-Man who are either more interested in words for visuals or are just at a level developmentally where they are ready for reading.

The leading contender I’ve found is Proloquo2Go. It’s the only one I’ve seen so far that appears to allow for both picture and text-based communication in such a way that both can be prominent and we can leverage his reading skills. The problem? It’s $190 and has no trial version. That’s a lot of money for something I’m not sure about, but the video tutorials are compelling and its extensibility and customization options put it well above anything I’ve tried so far. In the past, I’ve considered Proloquo2Go more of an app for older kids and adults, but I’m beginning to see the possibilities for our now five-year-old.

Anyone have any suggestions about iPod apps? If you are an app developer and think your app either addresses the above already or you’re working on an app that might, drop me a line.

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Practical Ideas for Protecting Autistic Children Before They Disappear

by Tim on April 16, 2010

The story of Nadia Bloom’s disappearance and rescue in Florida has made every parent with an autistic child experience something between nervousness and mortal fear. Any one of us knows our child could be in that story.

While our J-Man has not been what you’d call a ‘flight risk’ yet, that could easily change. Our biggest fear right now is that something will happen – like we’re in a car accident – and because he’s barely verbal, he will have no way to communicate with emergency personnel nor understand what they are telling him. Just about any parent with an autistic child has nightmares where our child is in danger and we are powerless to help them.

But what we can do right now is try to prepare as best we can to reduce the chances of harm coming to our children. We might not be able to predict every possible scenario, but we can act to greatly lower the chances of our children ending up in dangerous or life-threatening situations where we cannot help them. I’m sure we all feel a lot of anxiety even thinking about this, but as natural as that is, we can’t let our emotions get in the way of our children’s safety.

I don’t know the first thing about what Nadia’s family did with regard to preparing for possible emergency situations. So this is no commentary on them at all. The ideas below include those that came out of a session we had at school with a local police officer about safety and autistic children, other suggestions I’ve read about, or things we’ve tried ourselves.

[Standard disclaimery stuff - I'm not an expert in this at all. I'm compiling and relaying ideas that I've either learned from others or thought about myself, but whether they are appropriate for your family is up to you to decide. You have to set up a system that best fits your family and that offers you the most safety and security. When in doubt, ask your local autism support organizations, police department, emergency responders, teachers, and of course, other parents.]

Know the signs

Your best defense against something terrible happening is to notice patterns in your child’s behavior that may indicate that they are about to try to escape or otherwise take off in a way that could put them in serious danger, such as running off a sidewalk into a street.

This can be very difficult as often we aren’t sure what is going to bring this about in them or what to do to head it off. Try to keep notes about what’s going on each time your child tries to get away from you. Look for patterns. This is largely about data collection, pattern recognition, and using your parental instincts. If signs indicate that they may be getting to where they feel the need to escape, that’s when you act to preempt it as best you can.

Noticing any strong interests, especially ones that get more intense, may help in knowing when and where they may wander off to fulfill those interests.

No matter what, get a medical alert bracelet

Everyone who has experience with autistic children in potentially dangerous situations has told me the same thing – get a medical alert bracelet. We have put this off too long in our house because we thought he’d never wear it without an all-out battle. I know we’re not the only ones to have this excuse. I’ve talked to a few people in recent weeks who thought the same thing, got the bracelet anyway, and after some initial resistance, it’s now an accepted part of their daily life. The good ones are very sturdy and nearly impossible to take off if fitted correctly.

The officer who met with us at school said that if you do anything at all, get a medical alert bracelet first. She recommended having the child’s name, date of birth, phone number(s), and their diagnosis (or diagnoses) printed on the bracelet. She has an autistic son herself, and she said that while it’s very hard at first to get your child used to it, endure it and deal with it as best you can, but get it on them. It saves lives.

Bracelets are available at a multitude of places online in every material and style you can think of. Some also provide the service for an additional fee – like MedicAlert – of having a number an emergency responder can call to get your child’s medical information, etc. Make sure the place is reputable before you buy anything.

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Our First Experience with Therapeutic Listening

by Tim on August 7, 2008

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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Pointers and Tips on the IEP Process (Guest Post!)

by Tim on July 14, 2008

[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).

If you have questions for them or us, please put them in the comments section of this post.

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!!

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Toner for Autism?

by Tim on July 13, 2008

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.

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Assistive Technology Resource for People in NC

June 24, 2008

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. [...]

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I Want to Play My Computer Game, Please

June 17, 2008

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 [...]

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