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The Things That Matter

May 20, 2013 in Community Wisdom, Featured by Robert Rummel-Hudson

image[1]I take a lot of things for granted.

Looking back on what was undeniably a bad week, there were many elements I wasn’t feeling very good about. I was already feeling low myself, even before Schuyler’s Miracle League baseball situation went entirely off the rails. As is usually the case with youth sports, it happened for reasons that had nothing to do with the players but which ended up screwing things up for all the kids. Schuyler also had a small seizure, not a bad one but the first in many months, as far as we know. And of course, we’re preparing for the bad part of Schuyler’s IEP, the one that got kicked down the road until this week because of pieces that we objected to a few weeks ago. I have every reason to believe we’re going to object to them all over again on Wednesday.

So it wasn’t a great week. And as I said, I take a great many things for granted.

Until I received the email.

It wasn’t from anyone I knew very closely, and it wasn’t loaded with details so there’s no way to know what was missing from the story, what extenuating circumstances make this story different from my daughter’s. But it said enough. He was a little boy a couple of years younger than Schuyler with polymicrogyria, Schuyler’s monster. This boy had a history of small seizures that were identified as absence seizures in the email, but which sounded, judging from the aftereffects, like the partial complex seizures that Schuyler sometimes has, according to her neurologist. The boy had no history of grand mal seizures, not until the day last week when he had his first.

His first, and his last.

It’s easy to get lost in the world in which we live. It’s so easy to forget how quickly things can change. It’s not hard to miss how what seems like a quirk of development, an unusual manifestation of the architecture of a child’s brain, can turn into epic loss with one unfortunate firing of electricity. The world we live in can feel comfortable, even when it’s grey. We think about a future that might have color, but we sometimes allow ourselves to forget, for hours or days at a time, that the future could also contain bitter darkness, and that today’s manageable monster may grow fierce and hungry in an instant.

Would we live our lives differently if we thought about those monsters all the time? I don’t know, and I’m not sure I like the sound of that life, the one lived under threat. But I imagine how we might behave if we really considered the impermanence of things, and if we considered the things that matter. Happiness, fulfillment, lives that thunder and shimmer and take our breaths away. And love, the kind that makes us whole.

You have to ask yourself important questions, in the face of the sudden and the monstrous. If you knew it would all end next week, in a quick and awful electrical storm, or because of a tragic and random accident, or in any of the million ways the universe has devised to devour us, what would you do with the ones you loved? How would you live?

And if you can, if it is within your power to do so, you live your life that way.

Field of Dreams

April 29, 2013 in Featured by Robert Rummel-Hudson

imageOne of the most satisfying relationships that Schuyler has had over the years has been with the Miracle League. For those of you who don’t know, Miracle League gives over 200,000 kids and young adults with disabilities an opportunity to participate in a variety of sports, primarily baseball but also soccer, basketball, flag football, and even bowling, in leagues designed to accommodate their disabilities while at the same time giving them authentic sporting experiences. There are over 250 Miracle League organizations in the US, Canada, Puerto Rico and even Australia. If you’re looking for a pure good in this world, you couldn’t do much better than Miracle League.

A few weeks ago, Schuyler was asked to participate in a special baseball camp sponsored by the Texas Rangers Baseball Foundation. The Rangers have been huge supporters of Miracle League over the years, including providing crucial support for the construction of the Miracle League field in Arlington. The Foundation partners with Baseball Fantasy Camps, LLC to host a Fantasy Day every spring for Miracle League players.

I can’t tell you how much it means to these kids. Not just the fun and the activities and the attention, but also the fact that they are taken seriously. That’s not a small thing. The kids were broken up into a number of smaller groups and went from station to station, working on various aspects of the game. They were mentored by Texas Rangers Alumni, some from way back, others only recently retired, and it was clear that these former players and coaches were getting as much from the kids as they were giving.

I’m sure I’ll miss someone, but I’d like to thank them individually. The alumni who were present included Larry Hardy, Dave Hostetler, Kevin “Shrek” Mench, Don Stanhouse, Pete O’Brien, Tim Crabtree, Mike Munoz and Ken Suarez. Schuyler’s group was mentored by Kevin Belcher and Mark Brandenburg, whom I used to watch pitch for the Rangers back when I was in college. All these guys gave of their time, and it meant the world to every player and family member there.

It’s so easy to get caught up in the day-to-day issues and the differences and the anxieties of raising a kid with special needs. It’s easy to forget that they have a lot of the same dreams that the rest of us had, about summers spent in itchy uniforms with local sponsors’ names stitched on the back (I played for the Odessa American, the local paper) and breaking in a new glove that wasn’t right until it looked like it had been run over by a truck a few times, and that perfect once-in-a-season swing that sends the ball into forever.

Unrealistic? Perhaps, but they were probably just as unrealistic when I was thirteen and imagining my name being announced at the old Arlington Stadium. It’s on the backs of those dreams that we grow up and discover the dreams that were meant for us.

For a lot of kids, baseball dreams loan them wings for a while until they find the ones fitted just for them.

(Note: Next time, perhaps we’ll ask them to just put her first name on the back of her jersey; “Rummel-Hudson” hilariously took up most of the back of her shirt, almost encircling her number. But as a friend pointed out, Boston’s Jarrod Saltalamacchia still has her beat by a letter and a half. She’ll have to make baseball history some other way.)

Tips for Making Life Easier in Special Needs

April 25, 2013 in Featured, From Julia by Julia Roberts

I was driving my son to an appointment the other day and I was thinking about the chaos our family used to be in when he and his sister were little. Like years ago when we had 15 appointments a week and my head was still spinning because of the diagnosis and the new life and the missing of the old life.

1. Hold One Day Sacred – When we were at the height of therapy and doctor appointments in the early years (12-15 per week) I was committed to having one day a week when they didn’t have an appointment. Our day was Thursday. I would never, ever schedule an appointment on that day. It became a day we treasured when they were little.

2. Double Up on Appointments – We try to double up everything by scheduling things together to get appointments out of the way in the same day. The kids have come to appreciate getting them out of the way by interrupting their lives just one day.

3. Easy Clothes – For my girl with low muscle tone? Leggings, jeggings or jeans with elastic sides so buttons don’t need to be used.

4. Find Your Circle – find your people and hang on to them. When you find people who support you and your family in the way you need to be supported do not let them go.

5. Find Yourself (or don’t lose yourself in the first place) – Keep something of yours sacred. Fight to keep a hobby going or find one. Carve out time for yourself even if it’s a stolen 30 minutes a week.

 

Brick Wall Awareness Month (aka No Child Left Behind)

April 2, 2013 in Featured by Robert Rummel-Hudson

photo[2]April can be a controversial month for disability advocacy, with some folks going blue for Autism Awareness and others speaking against it in favor of Autism Acceptance. We’re exactly two days into April and frankly, a lot of people have already expressed exhaustion with the whole discussion, which they see as just one more instance of the disability community eating itself.

My daughter isn’t autistic, so strictly speaking, I get to punt on this one. But what I can do is present my own April frustration, one that I think might inspire a more universal reaction. I sat down with Schuyler’s school calendar today, trying to schedule a family trip, and made a realization, the same one I have every year about this time.

For us, and most likely for you, April is State-Mandated Standardized Testing Month. Not sure what color ribbon we should display for this issue. Personally, I’d go with brown.

No Child Left Behind testing is a complicated subject for special needs parents. On one hand, for those of us trying to give our kids an inclusive experience, NCLB testing is a pain in the ass, but it’s everyone’s pain in the ass. I can’t imagine I’d be in love with the thought of Schuyler sitting in a room with her special ed friends doing something different while all the mainstream, neurotypical kids went through the crucible of testing. (Here in the state of Texas, it’s the brand new State of Texas Assessments of Academic Readiness, or STAAR test, pronounces “star”, except everyone I know derisively says it like a pirate.) Of course, part of me thinks, “Hey, let everyone whose futures depend on this stupid test take it, and I’ll take Schuyler on a trip since the test doesn’t count for her anyway.”

Because that’s the thing. For kids like Schuyler who take a modified version of the test, the rules of advancement don’t necessarily apply. Schuyler’s future grade advancement will be determined by her special ed support team at her next IEP meeting. It will be their recommendation, not the results of the STAAR test, that will determine whether or not she advances to eighth grade.

(Schuyler maintains a B average in her classes, a mix of special education and mainstream courses, so I don’t anticipate any trouble there. Knock on wood.)

When Schuyler sits down to take the reading portion of STAAR today and tomorrow, she’ll be doing so in a modified version of the test. In her case, the modifications will be to a test with the same information as the regular test, but with changes like larger font sizes, fewer answer choices, simpler sentence structures, etc. There’s another more profoundly modified exam for students with significant cognitive disabilities, and all sorts of specific modifications to address specific physical and neurological impairments. But the information on the tests is the same, and federal guidelines require that all students take it, including special education students, at their grade level rather than at whatever ability levels are identified by their team.

It’s this point, the requirement that the test be administered at grade level, that I think is crucial. It’s here that I think the failure trap is set, and needlessly so.

I have mixed feelings about these tests. On one hand, I suppose the concept of inclusion probably includes wasting everyone’s time equally. But it feels like an especially gross way to treat kids with disabilities. Thanks to federal law, for which I am always truly and unequivocally grateful, disabled students like Schuyler are entitled to an Individualized Education Plan (IEP) developed by the student’s entire support team. This team has always included us as parents. More importantly, now that she’s thirteen, Schuyler herself is required to attend. This is exactly how it should be. But at the same time the government tells us that kids like Schuyler deserve an education specifically adjusted to accommodate their disability, it also says that one single test, albeit with modifications, is appropriate to measure the academic achievement of every student? Even for kids without disabilities, this has always struck me as a dubious contention.

Kids like Schuyler are traveling at different speeds, but they’re mostly faceplanting into No Child Left Behind like a brick wall. And it’s leaving a mark.

When I talk to other parents of kids with disabilities, this is a topic that touches them all, US all, on a deeply raw level. Despite accommodations, our kids don’t generally do well at all on these tests, and they find themselves deeply demoralized by the results. It’s an area in which they cannot help but feel a direct comparison between their own abilities and those of their neurotypical classmates. In subjecting our kids to these tests, we add to the already daunting obstacles they climb every day, obstacles we can barely even comprehend. We don’t generally learn much of anything about students with disabilities who take these tests. We learn plenty about the system, but nothing helpful. Nothing we didn’t already know.

No one can predict what Schuyler will achieve one day. But if there’s one thing everyone on her support team can agree on, it’s that she’ll get there at her own pace, and that pace is significantly slower than her classmates. She’s got a lot to deal with, more than her neurotypical classmates. Her slog is swampier than theirs, her victories more hard won. Demoralizing her and kids just like her with a useless test, one that they are forced to take at grade level, merely confirms what they already know, and more importantly, what they already feel. Schuyler’s pace is her own, and if it means she completes high school when she’s twenty-one rather than eighteen, or whatever place she finds herself when the time comes for her to move on, then that’s what’ll happen. Because that’s the hand she’s been dealt, and believe me, there are much worse hands to be played.

Schuyler works hard, harder than any kid I know, but for the month of April, that work will be largely useless, in our opinion. There are a lot of people making choices in her educational life, from her parents to her teachers and therapists to government bureaucrats who don’t understand the challenges of kids like Schuyler and don’t particularly seem inclined to bother trying.

But her monster sits at that table, too. And he gets a vote.

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Thanks again to Mabel’s Labels for their sponsorship last month!

Mabel’s Labels siteTwitterFacebook, andtheir blog! Subscribe to their newsletter here.

Fundraising Platform for Everyone (even us)

November 21, 2012 in Featured, Featured Organization, Product Reviews, Resources by Julia Roberts

A new fundraising platform called Fundraise asked if I would check it out and share it – I was interested because it was a platform anyone can use. Even us. Families with special needs can use Fundraise for the non-profits they support as well as other efforts – say, for a family struggling to pay for medical expenses. It can be used for an event used for fundraising.

Go ahead and check it out here at their site, Fundraise.com, Here are examples of some of the fundraising campaigns on their site…customizable and so easy! Year of the Dragon, Baby Jade, Frosted Fall, Michael Joyce

I just took the (honestly) quick tour and if you can set up a password and upload a photo you can use Fundraise. Take a tour here! Here’s what they say…

Our solution allows organizations access to the most powerful set of social fundraising tools available on the market. We provide a lightweight, scaleable, fully hosted redundant cloud solution that allows organizations to create unlimited fundraisers, activities and events. Our platform is completely integrated into Facebook open-graph and works on every mobile device, from fundraiser creation to donation processing.

I hope you go and check it out…I think it could make fundraising for our community really easy. And I’m all for anything that makes life easier on us!

Follow Fundraise.com on Twitter at @joinfundraise

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Features: Lightweight Platform * Fully Hosted * Custom URL (Example)  * Event Management * Ticket Sales * PCI Compliant * Mobile and “Responsive” (Works on devices and screens of all sizes) * Team Fundraising * Security (All activity is done over HTTPS and we are PCI compliant) * Analytics * Reporting * Automatic Receipts and Thank You * Accept Recurring Donations * Embeddable Donation Forms and Widgets * Email Center for Each User * Facebook Open Graph integration * Facebook Comments * Twitter and Google Plus Integration * Phone and Email Support

Pricing: 4.5% Transaction Fee * Credit Card Processing fee 3% for our merchant account, no cost if you use your own.

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While this is a sponsored post, helping us keep this community funded, the opinions are all my own. 

 

Glitch

November 5, 2012 in Featured by Robert Rummel-Hudson

(NOTE: Before I get too far, this post is going to contain information about the plot of the new Disney animated feature, Wreck It Ralph. Now, I’m not sure how sensitive you are to this kind of thing; we are talking about Wreck It Ralph here, after all. It’s not like I’m giving away secrets from The Usual Suspects or The Crying Game. But in the interest of keeping my in box wrath-free this morning, please consider this to be a big old SPOILER ALERT for Wreck It Ralph.)

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As parents of kids with disabilities, sometimes teachable moments sneak up on us. We take our kids to the movies, or we turn on the television, and we’re not expecting anything notable to happen. As Howard Beale says in Network, television isn’t about truth. “We’re in the boredom-killing business,” he says. The same is pretty much true of most entertainment geared towards kids.

That’s what I thought when I took Schuyler to see Wreck It Ralph over the weekend. But I wasn’t counting on Vanellope von Schweetz.

The movie takes place in the inner world of arcade video games. Think of Toy Story meets Tron, with a splash of The Iron Giant. Ralph is a great hulking video game villain who is tired of his bad guy lot, and sets out to find heroic redemption within the worlds of other arcade games. One of the worlds he visits (and largely wrecks, because, well, he’s Wreck It Ralph) is a racing game called Sugar Rush. (Imagine Mariocarts as realized by seven year-old girls.) It is in this game world that he meets Vanellope von Schweetz.

Vanellope (voiced by Sarah Silverman) is a precocious little girl who dreams of joining the racers in the game, but there’s a problem. She’s not actually a legitimate character in the game, but rather a “glitch”, like a errant piece of code. A “ghost in the machine”, perhaps. As such, she occasionally pixelates and disappears, often reappearing moments later in a slightly different spot. As a glitch, Vanellope is considered by the other game characters as inherently flawed, and is shunned accordingly. (Mean girls are apparently a universal phenomenon.) She dreams of joining their society by successfully racing in the game, but the odds are stacked wildly against her.

As her character developed, I snuck a peek over at Schuyler from time to time. I could tell from her expression that her wheels were turning. This was reaching her, in the same way that The Little Mermaid spoke to her (well, you know what I mean) the first time she saw it. I remember when Ariel lost her voice, and Schuyler turned and pointed to the screen, and then to her own throat. She was having the same kind of thought process while watching Wreck It Ralph.

I was worried when the story revealed that Vanellope wasn’t always a glitch. Turns out, she was once a central character in Sugar Rush, until another character messed with her code in an attempt to eliminate her from the game. The plot was clearly going to turn around an ending in which Vanellope and Ralph successfully reboot the game, thereby restoring everything to its original settings. I remembered at the end of The Little Mermaid, when Ariel got her voice back. Schuyler turned and looked at us somberly, and even at her young age, it was clear that she was calling bullshit on this turn of events. I braced myself for the same thing to happen when Vanellope was “fixed”.

Then a funny thing happened. At the end of Wreck It Ralph, Vanellope was indeed restored to her former place within the realm of Sugar Rush. She was even revealed to be the princess and rightful ruler of the game world.

But here’s the thing. Vanellope still had her glitch.

When the movie ended, the little girl who was broken and put upon by the world was victorious, and she was still broken. She became a beloved character in the game, but it was pointed out that she achieved popularity with players while retaining her glitch.

On the way to the car, Schuyler asked me a question. I have to be honest, it took a few tries before I understood what she was saying, although I really should have caught it from the very beginning.

“Daddy-O, do I have a glitch?” she asked.

“Yeah,” I answered. “I guess you really do, don’t you?”

Thus began an afternoon of productive conversation with Schuyler, who would now like for her “little monster” to be referred to as her “glitch”.

I can do that.

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Photo credits: Disney

Please visit Build-A-Bear Workshop’s blog, where co-founder Julia Roberts shares her daughter’s special needs journey. We’re grateful to Build-A-Bear Workshop for supporting this community over the past year.

Watching (privacy and special needs)

October 22, 2012 in Featured by Robert Rummel-Hudson

Schuyler had an odd exchange with one of her neurotypical friends at school last week, which is hardly surprising, both for a twelve year-old girl and one wired as strangely as she is. It was a conversation rife with peril, illustrating how almost paranoid she can be when she’s afraid other little girls are talking about her (which is probably bad, because at her age, someone is always talking about someone), and illustrating repeatedly how her presentation, naive and direct as it is, can feel very much like bluntness, or even rudeness.

Schuyler steered this conversation into dangerous waters, and then somehow, with the help of friends who seem to grasp her difficulties clearly enough not to take her too personally, she navigated her way out of them. It was one of those episodes that probably happens every day to almost every pre-teen girl in America. But two things were different about this conversation.

Because of Schuyler’s disability, it took place mostly by way of text message, using the iPad that she utilizes as a speech prosthesis.

And we watched the whole thing transpire in real time.

For some reason, it’s very important to me that you should understand that this wasn’t the result of an intentional plan on our part. When I set up iMessage on Schuyler’s iPad, I also set it up on her little iPod Touch, which she uses quite frequently as well. The idea was to give her more options with which to communicate with her friends (who at the time were almost entirely our adult friends as well). But when she has a conversation on one device, they show up on the other, complete with little audio notifications.

Even when one device pings, we try not to look at what she’s saying. But when it went off in the middle of the day last week, it was clear that she was sending messages during school. That’s not a problem in and of itself; knowing that she was perhaps doing the high tech, Twenty-first Century version of passing notes in class was encouraging. But we looked at the conversation that was unfolding because it was taking place with someone who wasn’t in her contacts, someone who just showed up as a phone number, not a name. And then we kept reading as it happened. Reading, and worrying.

So yes, we watched the conversation, and we fretted about many things, not the least of which was a persistent question: Were we invading Schuyler’s privacy?

The answer is clearly yes. I can make as many excuses about not knowing who she was talking to, or not intentionally setting up her devices so they would function as eavesdropping implements, but the truth is still what it is. We were listening in on her conversation. We started because we wanted to be sure she was talking with a classmate and not a child molester, but we stayed with that conversation long after we figured out whom it was with. Out of fairness to Schuyler, we told her that we’d seen the conversation and we talked about what had gone down. But that conversation was very much after the fact.

To be honest, I’m not entirely sure how I feel about it. I’m writing this, so clearly it’s not a casual invasion. For years, we had the power of checking the transcripts of Schuyler’s daily output on her dedicated speech device but almost never did so, respecting her privacy except in a few cases where something happened at school where that transcript could clear up questions and speak for her in her own defense. Inasmuch as we could, we always granted her a measure of privacy. We still try very much to do so.

And yet, I guess our vigilance manifests itself in some ways that aren’t always pretty, or fair. And when I weigh the possibilities and potential outcomes of her new conversational world, I feel like a creeper for reading her exchange, but I am willing to accept that if it means I don’t feel like an abysmal failure later after she befriends someone online who takes advantage of her naivety and her trusting nature and hurts her one day, and I never saw it coming.

So we make bargains with the devil. We commit small crimes against our child, in the hopes that we can prevent larger ones later. That hope may be loaded with its own naivety, perhaps. But we’re a little like Linda Schell, the mother in the film version of Extremely Loud & Incredibly Close, who (SPOILER) secretly goes before her son Oskar on his desperate adventure in order to protect him from afar. In the film, she explains it to him at the end.

Linda: I went into your room and I tried to think like you did. I wanted to understand.
Oskar: You were snooping on me?
Linda: I was searching for you.

We try to go out into the world with Schuyler, which of course we can’t, and protect her from the pitfalls both of a dangerously complex world and the traps of her own making. This is, of course, also impossible. But we take on that quixotic mission because we want to hold her above the worry and the heartbreak. Doing so means standing in it knee-deep ourselves. And I suppose it means stealing from her independence sometimes, in the hope of strengthening it in the bigger picture.

I feel real hesitation to meddle in her life, and I think it might be a mistake, albeit one I make out of both love and necessity. I can’t help it. I watch her from afar, but not too far, because I love her desperately. And also because I know her monster watches her, too. But with eyes that are both cold and opportunistic.

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Julia, site co-founder, contributes to Build-A-Bear Workshop’s blog about her daughter’s journey with special needs. Please visit to see what story is being told on our site sponsor’s blog.

A Day Without Lawyers

June 18, 2012 in Featured, Yes, I Am a Special Needs Parent… by Robert Rummel-Hudson

A few months ago, I wrote about the legal fight going on between the innovators of Speak for Yourself, a augmentative speech app for the iPad, and the Prentke Romich Company and Semantic (“The Iceman Cometh, with his Legal Team”). I quickly described the situation at the time like this:

Okay, let’s wander into the weeds for just a moment. Last year an AAC app called Speak for Yourself was released that got the attention of a lot of us because of its use of the LAMP (language acquisition motor planning) concept. This focuses on a core vocabulary using consistent motor patterns that do not change. It is the basis of successful language systems like MinSpeak, licensed by the intellectual property company Semantic Compaction Systems for use in devices produced by the Prentke Romich Company, under the brand name Unity. It is these two affiliated companies, Semantic Compaction and PRC, that are attempting to sue the aforementioned pants off the developers of Speak for Yourself.

Well, things have changed a bit. Despite the fact that the parties have yet to have their day in court, Apple has pulled Speak for Yourself from the iTunes App Store. (PRC released a statement that begins with “Last week Prentke Romich Company (PRC) learned that Apple removed a language assistance app from its iTunes® store pending the outcome of a patent infringement lawsuit filed against the company that developed the iPad® app…”, but a careful read of the legal documents shows that Apple made this move at their request. Weasel words. Gotta love ‘em.) If you don’t already have Speak for Yourself on your iPad, you are out of luck, at least for the time being. If you do, you won’t be able to receive updates or remote fixes, and when Apple upgrades the operating system for the iPad later this year, there’s no guarantee the app will still work at all.

This is obviously a concern for users who are using the iPad and Speak for Yourself as their primary mode of verbal communication. Including, as of this summer, my daughter Schuyler.

There has been a great deal written about this situation. If you’re interested, the first, best place to go is this blog post by Dana Nieder, “The Silencing of Maya”. Dana has been the go-to person on this story, and she’s compiled a comprehensive list of links to the story as well. If you want to know more about this, that’s where you should go.

Now for my take on this, for whatever it might be worth.

There has been a great deal of discussion as to the validity of PRC’s claims against Speak for Yourself, and in a sense, it makes sense for everyone, particularly PRC and Apple, to let a court of law settle those claims. In a very real sense, however, that outcome is ultimately of limited relevance. As things stand right now, everyone loses.

Speak for Yourself loses because their product and their company dies if no one can buy it. Their clients obviously lose a tool that works, and that is very much not a small thing. Apple probably doesn’t lose, to be honest. We tend to think of the iPad as a major component in the disability world, but it’s easy to forget that the opposite probably doesn’t hold true. Apple probably sells more iPads in countries that don’t even have electricity than they do to users with disabilities. Our poor opinion of their business practices isn’t keeping Apple executives up late at night.

But most of all, PRC loses. They can win this court case, they can squash Speak for Yourself and get everything they seek in this situation, but the fact remains that with every story that runs in Time and on CNN and the Huffington Post, they are introduced to thousands of people who know nothing about their good work or their mission statement or their hundreds of dedicated professional employees. No, PRC is being introduced to thousands of people who will now and forever more know them only as “the big corporation that screwed over that poor cute little disabled girl”. That’s the kind of thing that leaves a mark. We can (and will) continue to argue about how accurate that public perception may be, but it’s irrelevant.

It’s irrelevant, and I suspect PRC knows it. I think they might have painted themselves into a corner, trapped by their own poor PR decisions, and they don’t know how to get out of it.

There is a way out, for everyone. The parties involved can take a step back and consider how they might come together and join forces. Under the auspices of PRC and the community of Unity users, Speak for Yourself and its developers would discover a credibility and a world of users that they would be unlikely to achieve on their own. PRC would finally be able to repair some of the public relations damage they’ve sustained and would grow their family. They would solve the very real technical problems involved with breaking into the consumer electronics market without a great deal of development skill. That’s no small consideration for PRC; frankly, their early efforts with iPad app programming has bordered on embarrassing. On their own, I don’t think PRC could release a solid MinSpeak app any time soon even if they wanted to. And perhaps most of all, PRC would benefit from a kind of evolution of their language system. One of the things I’ve been hearing expressed quietly here and there, and it’s something I agree with, is that in its use of a single representative symbol configuration, Speak for Yourself probably represents an improvement on Unity. PRC has a chance to benefit here, if they can work out a collaboration or even a merger with Speak for Yourself.

Will this happen? Frankly, I doubt it. Speak for Yourself’s team seems committed to fighting this fight, and rightly so, and PRC is showing no sign of backing down. But if all the parties involved could just get together in the same room for a Day Without Lawyers, this whole horrible state of affairs might just have an ending that doesn’t leave anyone feeling taken advantage of. Kids like Maya and Schuyler least of all.

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Be sure to check out Quinnlin’s journey with special needs and a special friend at Build-A-Bear Workshop‘s blog!

The Future is its Own Kind of Monster

June 4, 2012 in Featured, Featured Member by Robert Rummel-Hudson

As with most of you, Friday was my daughter’s last day of school. It also marked the end of her first year of middle school. It was rocky but she made it. On to the future.

The future is a terrifying place for parents of kids like Schuyler.

There’s a thing about the future that we don’t always face very easily. It’s uncertain. And while that’s certainly true for any parent, this uncertainty multiplies exponentially for special needs kids and their families. In this season when most parents are celebrating the end of the year and student accomplishments, and when unimpaired kids settle in for a long summer of fun, the end of things brings something different for us. Regardless of how successful or troubled the school year may have been for us, mostly we get to the conclusion of this chapter in our kids’ lives and we think, “Oh, crap. Now what?”

It’s rarely an easy or clear answer. The beginning of summer reveals a thing very much like dread, with all its concerns about child care or the unknowns of summer camps, of sustaining the gains made in school, and of the loneliness of kids who without the enforced socialization of school find themselves spending three months without a single friend. For Schuyler, summer means accompanying me to my university office while I work. That was fun when she was seven. Now at twelve, it has lost its charm for her, and I feel guilty making her spend her summer like this. Perhaps this will be the year we find something else, a camp situation that she can handle, one that WE can handle. Until then, thank God for Netflix streaming and the iPad.

The distant future is a terror for families like ours, especially with an only child. I imagine Schuyler as an adult, burying her parents and facing this grand rough world all on her own. So I do whatever I can to expand her family, to increase the number of people who just might give a damn about her if she were to suddenly find herself alone. And yet I also live in hope that she might find a measure of independence on her own, and peace. Schuyler has always been a lonely child, albeit a mostly happy one. I’m not sure if this makes me feel happier or sadder, but by the time she has to truly face the world alone, she will be a practiced hand at it.

Or maybe, just maybe, she will have found her forever person by then, and won’t have to face a solitary future.

The end of school means an end of fretting about school, but that’s a temporary reprieve. For Schuyler, the past year was a big one, and the more we look back on it, the less successful it feels. I’m not sure I feel like she received the support she needed, not from all her teachers. Her special ed team was solid, and they cared deeply for her, but she had at least one mainstream teacher who failed her miserably, and her AAC use was extremely poor, so much so that we are seriously regrouping over the summer and approaching it anew next year.

There are larger issues, though. This school district represented the very best case scenario in the state of Texas. Its commitment to assistive technology and its belief in what we were trying to do with and for Schuyler had convinced us that we’d found a home at last, after years of moving and started fresh and hoping against experience that this time would be different.

But things change. Administrations change, and each one seems to bring a totally new philosophy with it. The current administration believes in total inclusion. Every kid with an AAC device will attend their home school now, no special classes for AAC users, no transitional work, nothing, just throw them into a school with professionals who have been trained to support AAC and the students will flourish. It sounds very wonderful and fair and ambitious, but I’m starting to believe that the most appealing thing about this philosophy, from the school district’s point of view, is that it requires very little in the way of further allocation of resources, aside from the additional AAC training for every teacher. And here’s some news that will surprise you if you are paying absolutely no attention at all: that training isn’t happening. It’s not even happening at Schuyler’s middle school, and you can literally see that middle school out the window of her old elementary school AAC classroom.

Add to this the fact that this school district is cutting teachers, increasing classroom sizes, and of course — OF COURSE — reducing budgets for pesky frivolities like special education and technology resources. And this is the story all over the state of Texas, and I suspect all over the country. And even if Schuyler does make it out of school with something approximating an education and has the skills to live independently, how will she get around? There is no real mass transit in the state of Texas, not to speak of, anyway. Schuyler’s seizures have so far only been observed outside of the doctor’s office, so she’s not on paper as actually, officially having them. But that will most likely change, especially if she graduates from partial complex seizures to something more… dramatic. And when that happens, she won’t be able to get a driver’s license. What then? In Texas, it’s a very dark prospect. In another city like Chicago, perhaps not so much. The future suddenly looks like it lives somewhere that isn’t Plano, Texas. Or even Texas at all. And she’s twelve; this isn’t exactly a distant problem that we can keep putting off.

So we dust off the long-discarded shoes of the nomad parent, long after we thought we’d never need them again.

Sigh. Deep breath.

And so it goes, and so it goes, into the days ahead, the weeks and years, always driving into the fog, bracing for whatever obstacles may suddenly loom large ahead of us.

Our kids have their own various afflictions, but for parents, the future is our monster. We gaze at it in wonder and fear, trying to discern if we see success or failure, happiness or despair, successful learning or frustration, independence or abandonment. Life or death.

The future is its own kind of monster.

 

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Tips for Feeding Kids with Special Needs

May 24, 2012 in Featured, Insider Insight by Admin Dawn

By The Real Food Moms, Jeannette Bessinger, CHHC and Tracee Yablon-Brenner, RD, CHHC, www.realfoodmoms.com

For your child’s body and brain to function at their best, it is important to provide a diet high in amino acids, the building blocks of protein. But since the body is unable to store excess amino acids it’s smart to split up your child’s protein supply—ideally among the three main meals and two snacks. By feeding meals high in protein throughout the day, you help the neurotransmitters in the brain function better, and stabilize blood glucose levels—preventing hyperglycemia and reactive hypoglycemia—blood sugar “ups” and “downs” that can affect some children’s ability to focus and/or settle down.

One cardinal nutrition rule is to stay away from simple carbohydrates, which break down into glucose and release too quickly into the blood stream. Sugar and high fructose corn syrup are a few examples of simple carbohydrates to avoid. Children are affected differently by sugar, however many studies suggest that sugar negatively affects behavior, impacting aggression, attention, hyperactivity, mood and proper mental function. It is best to replace sugary drinks and snacks with healthy high protein snacks like veggies with hummus or nut or sunflower butter; smoothies with whey or rice protein or nut butter; nuts, seeds, sliced hard boiled eggs, fresh fruit with nut or sunflower butter, yogurt with granola or with nuts and seeds and a dash of honey. When serving foods with added sugar, it’s best to keep it below 15 grams per 100 grams. Cereals should have 3-5 grams of sugar per serving, max, and it’s best to include protein with breakfast, e.g., hardboiled eggs or yogurt with nuts and seeds and a dash of honey. Incidentally, organic honey has many beneficial nutrients—in addition to being a taste treat!

Another essential is to remove synthetic food additives from your child’s diet. For a food additive to be allowed in the diet, it must be certified as “generally recognized as safe” (GRAS), which means it will not have a significant negative effect on health. Unfortunately we don’t know the long-term effects of ingesting chemicals on our nervous, immune, respiratory and endocrine systems. There are 24 synthetic food additives, and we are going to address the four major categories: artificial colors, artificial flavors, artificial preservatives, and artificial sweeteners.

Artificial colors have been embroiled in controversy for some time. A November 2007 study published in The Lancet stated that artificial colors in children’s diets contributed to hyperactive behavior. The UK’s Food Safety Agency released this statement on July 20, 2010: “An EU-wide health warning must now be put on any food or drink that still contains the colours that are thought to cause hyperactivity in some children. This is following the Southampton Study, commissioned by the Agency, which suggested a possible link between consumption of six food colours and hyperactivity in children. The colours are Tartrazine (E102), Quinoline Yellow (E104), Sunset Yellow (E110), Carmoisine (E122), Ponceau 4R (E124) and Allura Red (E129).” There had been a voluntary ban on food coloring in foods in the UK. In the United States, Blue No.1, Blue No. 2, Green No.3, Red No. 40, Red No. 3, Yellow No. 5 and Yellow No. 6 are still permitted in our foods and medicines. Some of these chemicals trigger histamine release and create allergic reactions like hives (uticaria). In the September 2010 issue of the American Journal of Psychiatry, Stevenson, et al., found strong evidence that histamine release affects hyperactivity levels in animal models and also influences frontal cortex dopamine release. In this study, there was improved behavior when artificial color was removed from the diet. The research underscores the importance of avoiding food and medicine with artificial colors. Moreover, most artificial colors are made of a mixture of coal tar. The International Agency for Research on Cancer says that products with 5% crude coal tar are considered a Group 1 carcinogen. How’s that for a reason to remove artificial color from your child’s diet?

Artificial flavors are also a concern, especially (MSG) monosodium glutamate, an amino acid from glutamic acid. MSG is used in commercial cooking to enhance the flavors of many common processed foods including canned soups, frozen dinners, seasoning mixtures, and fast foods. Many fermented products have naturally occurring glutamate, like Worcestershire sauce, soy sauce and steak sauces. Glutamate is also in many other additives like soy extracts, protein isolate, hydrolyzed vegetable protein, hydrolyzed soy protein, hydrolyzed yeast, and autolyzed yeast. MSG is not always easy to identify on a label. Be on the lookout for words like “spices” and “natural flavorings” on a food label, which means it might contain MSG. Two food additives, “disodium guanylate” and “disodium inosinate” are only used with MSG, so if they’re on the label, there’s a high likelihood that MSG is in that product.

Glutamic acid, which MSG is made from, is classified as an excitotoxin. However, it is considered to be GRAS by the FDA. Many people are affected by MSG, and children who have special needs are especially vulnerable since they might not be able to communicate their discomfort, which may manifest as a headache or nausea. Removing artificial flavors from your child’s diet is the safe way to go, and could help to reduce behavioral problems.

Artificial preservatives, such as butylated hydroxytoluene (BHT) and butylated hydroxyanisole (BHA) are being investigated for provoking chemical sensitivities. These preservatives have been associated with causing broncho spasm, rhinitis and more particularly in triggering hives (uticaria). Many studies on mice have shown that these preservatives cause learning deficits, difficult sleeping, developmental delays, aggression, decreased orientation reflex. Key reasons in removing artificial preservatives from the diet because that could also relieve behavioral symptoms such as aggression, hyperactivity, developmental delays.

Artificial sweeteners are much sweeter than table sugar, “sucrose,” and can interrupt neurotransmitter balance, which could make behavioral symptoms worse.

The following sweeteners have been tested for their safety through the Center for Science in the public interest. Aspartame which goes by Nutra-sweet, Natra-taste and Equal, is one that people who have Phenylketonuria (PKU) have to avoid because they can’t break down phenylalanine which can accumulate to toxic levels. Sorbitol, xylitol, mannitol, maltitol, lactitol, isomalt, erythritol, and hydrogenated starch hydrolysates are sugar alcohols that can cause stomach discomfort and diarrhea. Acessulfame known as Sunnet, Sweet One, and acessulfame potassium, should have more testing and should be avoided because rat studies found that it caused tumors, mostly benign but some malignant. Saccharin, which is Sweet n Low, may cause cancer. Stevia can’t be metabolized in our bodies which is why it has zero calories. More testing should be done on its safety. Sucralose, which is Splenda, is actually sugar chemically combined with chlorine…Buyer beware! Tagatose, a very new type of sugar made from milk sugar lactose, can cause digestive issues such as gas, bloating and nausea because it’s not well absorbed. It can be found in Diet Pepsi, Slurpees from 7-11, etc.

These are a few examples of why package label reading is essential in today’s world. Many of the sugar substitutes mentioned are found in gum, yogurts, baked goods, and drinks, including iced tea, soda and juices. It is safest to use natural forms of sweeteners. Some of the best include organic honey and turbinado sugar, which is raw sugar crystals formed by spinning the sugar in a centrifuge. The juice released is crystallized to keep the rich molasses color and flavor, and it’s less processed than conventional table sugar. Sucanat is the trademark name for the turbinado process.

Trans-fat is the end result of hydrogenation, the process in which hydrogen is added to liquid vegetable oil. Partially hydrogenated fats contain Trans-fat, and are less expensive and have a longer shelf life than standard fats. Trans-fats interfere with an enzyme called delta 6 desaturase, which is important in converting essential fatty acids Omega-3 and Omega-6 fatty acids to the active form (ARA) arachidonic acid, (EPA) eicosapentaenoic acid, and (DHA) docosahexaenoic acid used by the brain. It is important to avoid Trans-fat and partially hydrogenated vegetable oils. A deficiency of 6 desaturase causes a deficiency of ARA, EPA and DHA, which are important for brain development, brain functioning, brain signaling and proper vision processing. Research has shown that children who have Autism, ADD, ADHD, dyslexia, and dyspraxia may have low levels of 6 desaturase so when they eat foods containing Trans-fat or partially hydrogenated vegetable oils, it can make these conditions worse (1). To increase the activity of the desaturase enzymes, it is important that the diet includes an adequate amount of vitamin B3, vitamin B6, vitamin C, magnesium and zinc which are available by eating local organic fruit, vegetables, whole grains, organic yogurt, and meat, nuts and seeds (2).

Including foods rich in Omega-3 fatty acids cannot be overemphasized. Some basic sources are wild Alaskan salmon, seaweed, eggs from hens fed a diet high in Omega-3’s, flaxseeds, pumpkin seeds, walnuts and algae. Caveat: To ensure food supplements are free of mercury, use either an algae-based or fish oil Omega-3 fatty acid supplement, which is third party-certified and molecularly distilled.

By purchasing organic-labeled products, you’re guaranteed that the foods you’re feeding your family are free of artificial color, flavor, preservatives, trans-fat and pesticides. Not all products have the USDA organic seal because certification is voluntary and expensive. So it’s important to read the labels carefully to know what you’re really buying. To have the USDA seal means a product is comprised of 95 percent organic ingredients. Foods that have at least 70 percent organic ingredients can use the phrase “made with organic ingredients” and list up to 3 ingredients. If the product has less than 70 percent organic ingredients the name of the organic ingredients can be included on the food label.

To get back to basics, incorporate the Real Food Moms three P’s: Plan, Purchase and Prepare real food! This takes a little organization, but you are ensuring delicious, unprocessed food for you and your family. You should definitely see some behavior and long-term health benefits for the entire family.

Get more from the Real Food Moms at their blog!

Stordy, B. Jacqueline. Dark adaptation, motor skills, docosahexaenoic acid, and dyslexia. American Journal of Clinical Nutrition, Vol. 71 (suppl), January 2000, pp. 323S-26S

Osmundsen H, Clouet P. Metabolic effects of omega-3 fatty acids. Biofactors 2000;13(1-4):5-8 2000. PMID:15800.

Republished from January 2011

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