Hopefully, that title got your attention. It’s a warning, folks. The contents of this post are not for the weak and not for those who are apt to put their fingers in their ears and yell “TOO MUCH INFORMATION” or simply fill the air with “LA LA LA LA LA” when uncomfortable topics are discussed.

Because of the nature of this entry, the entirety of it is stuck behind a “more” link. No use upsetting those who’d rather not see it.

Read the rest of this entry »

Life was much simpler when my weekends consisted only of playing Banjo-Kazooie in my underpants.

These days, however, there are so many competing interests vying for weekend time.

• Miracle League games - Gareth is signed up for the Blair County Miracle League this year.  The ball games are on Saturdays, but we don’t yet know what time of day they are.  They are, however, all held in Altoona.
• Camping trips - This weekend, I’m heading out to Hammersley Fork to get the camp ready for the season.  And then, of course, I’ll have a desire to use it throughout the summer and fall.
• Bike/kayak outings - These are typically Saturday affairs since our Sundays are already hectic as is.
• Trip to Philly at the end of this month - Well, that’s a no brainer.  It’s to visit the Star Wars exhibit at the Franklin Institute.
• Putting in time at RBR - I’ve been offered the opportunity to work at the shop part time to learn recumbent mechanics, help coordinate bike accessibility efforts, and barter my time towards the purchase of a new bike.  But the hours are only until 6PM on weekdays, and the only day they’re open on the weekend is… Saturday.
• Kayaking with coworkers - Somebody at the office is organizing a beginners group outing for May 3rd, same day as the first game in the Miracle League season.

Yeesh.  How did I get this busy?  At least I can look forward (I hope) to once again just paying somebody to mow the lawn.  But other than that, I’m pretty much screwed for time.

The first dangerous thing was that I went to RBR to check on a part I had ordered for my Draftmaster rack.  It’s an add-on module that provides a mount point for a tadpole trike.  That module isn’t the dangerous part - just the fact that I stopped at RBR.

The second dangerous thing was that RBR had an HP Velotechnik Grasshopper FX assembled and on a rack.  I’ve been wanting this bike for a little over half a year now.  While Rob was talking to another customer, I pored over the details of the Grasshopper - the rack, folding mechanism, flexible chain tube, padded seat, rear hub, very green paint job.  It’s a lovely little bike, and I loved getting my hands on it.

And then Rob said, “You want to take it out for a ride?”

I had never ridden a two wheeled recumbent before, so I was hesitant, but he got me acclimated, gave me some tips, and then helped me push off not unlike an adult who runs behind the first time cyclist. After some initial shakiness, I picked up on the balance and steering enough to start tooling around the parking lot, doing figure eights, and occasionally making too tight a turn.  It was almost as exhilarating as my first trike ride in that very same parking lot.

The third dangerous thing happened when I went back inside.  Rob and I got to talking about a lot of things related to the shop during which I mentioned that Brandy once suggested I work a few odd hours for RBR since I had a jones to help out.  Rob was quite for the idea.  We then went on to talk about customers with disabilities.  He has been getting a lot of referrals for both kids and adults looking for adapted bi/tricycles.  Turns out I have a vested interest in that stuff, so we started talking about ways that we could work together to serve two distinct communities - I would concentrate on the folks with disabilities, he would concentrate on his usual clientele. Then he asked if I wanted to learn how to weld.

I had to get out of there before I quit my job and plunged my family into poverty.

Eelke Folmer is an assitant professor in the Computer Science & Engineering department of the University of Nevada. He’s also a gamer with an interest in game accessibility. He has quite a variety of projects including Guitar Hero for the blind, but the one that really caught my attention was Gordon’s Trigger Finger, a mod for Half-Life 2 that essentially turns the player into a bot while allowing the player to retain control of firing weapons.

And it just so happens that I know somebody who has difficulty controlling movement in games but is perfectly capable of hitting a switch to initiate weapon fire. I’m going to have to try out this mod and see how it goes. If it works well for Gareth, we might end up having to buy another copy of Half-Life 2 in order to do multiplayer.

For the record, that would be my third copy of HL2.

Brandy and I have taken Gareth to Talleyrand park a few times. And every time, we’ve wanted to get to the other side of Spring Creek. Because of the bridge, what with its steps on both sides, we end up walking Gareth in his wheelchair out along the road on a narrow, crumbling sidewalk. We tried lifting him up onto the bridge once, but we’ll not do that again.

And, it seems, we won’t have to. Bellefonte is installing a handicap accessible bridge in Talleyrand as I write this! Since I don’t trust the CDT to have the story online more than two weeks, you can jump below to read it here. Read the rest of this entry »

As I’m not known for being emotional, it may surprise you to know that emotional moments are not foreign to me. In particular are what I call the “Dad” moments - those times in fatherhood when you’re so happy you could (and nearly do) cry. Unfortunately, all of my dad moments are rather odd, but here goes:

Reading “The Hobbit” to Gareth in the hospital - This one almost doesn’t count since it was Gareth’s second day of life and he was largely unresponsive, having just the night before gone through his traumatic entry into this world. Still, it was something I really wanted to do, so I headed into a little bookstore in Danville, grabbed their last copy, and got back to the NICU to proceed with the narration. It was something I had always pictured doing as a dad, even if I didn’t picture having to do it in those circumstances.

Introducing Gareth to Quake 3 Arena - Holding him with one arm and gaming with the other, I sat Gareth in my lap so he could see what his dad did for fun. We’ve revisited Q3A a few times since then when I was adapting joysticks for his use as input devices. Since then we’ve moved onto other less bloody games.

Gareth’s first trip to a movie theater - For Shrek 2, of all things. Years have been spent honing the sharp edge of my movie snobbery. I am intolerant of chatter, children, phones, and comedians in my theater environment. As such, I was always very concerned about taking Gareth into a theater with his suction gear which consists of a small suction pump connected to a canister and tubing. When you kick it on, it makes quite a bit more noise than one would imagine, which does nothing for a normally quiet movie setting. After Shrek 2 had been in theaters over a month, I took Gareth to a show I thought would be largely empty. It sort of was, but there were enough other attendees that I started feeling self-conscious. But when the lights dimmed, the trailers played, and the opening of the movie started to run, I forgot about everybody and just marveled that I was sitting in a theater with my son. Seriously, I teared up. Then, about 10 minutes into it, Gareth lost all interest and started crying like crazy. We left shortly thereafter.

Gareth discovers that the soul still burns - Due to the various joysticks I have for console games, we eventually gave up on PC gaming and moved to the basement where Gareth discovered Donkey Konga, Taiko Drum Master, Dance Dance Revolution, and Soul Calibur. After just a little time with Soul Calibur, Gareth picked up on the fact that movement was handled with the joystick and attacks were handled by the buttons. He quickly learned to move his hand to the stick to position his fighter and then move that same hand to the buttons to kick, punch, and throw. How could I not be proud of that? He has now added Wii Sports Baseball to his list of regular games. He also has an insane love of video game theme songs - I have only to whistle the Donkey Konga theme or hum the intro to Taiko Drum Master to make him burst into instant laughter. No, he does not know the Mario theme.

Gareth faces down Darth Vader - I spent so much time worrying about taking Gareth away from his support staff (nurses, doctors, therapists) that I spent no time contemplating how great a vacation could be, so imagine the 180 I did when we arrived at DisneyWorld and almost instantly ended up on a stage with lightsaber on hand, swinging at Darth Vader. Holy shit. From that moment on, we all had a great vacation, and I had another dad moment. That one became a Gareth moment, too. He enjoyed telling everybody he knew that he fought Darth Vader and that daddy dropped the lightsaber.

Gareth gets his first bike - And probably his last.  About the time I decided to get back into bicycling, Gareth decided he loved nothing more than to pedal a trike around his preschool playground. From that moment, I planned for us to find a way to ride together. I got three dad moments out of this event: a first moment when he sat on his bike for his fitting; a second moment when we rode it for the very first time even though it was raining and in January; a third moment when we rode together in the RBR rally. Our ride in the Colyer 4th of July parade comes close, but that wasn’t emotional enough to qualify under my “Dad moment” rules.

Walking Gareth to school - This is the moment that inspired today’s entry. This morning, I walked Gareth to his second day of kindergarten, meeting one of his classmates on the way, hanging out while we waited for the crossing guard, and dropping him off in his classroom. On the way back, I just realized how great it felt to do that, to be an honest to goodness parent of a child old enough, smart enough, and lucky enough to be going to school like any other kid when his whole life has been stacked against him.

I’m bound to have plenty more dad moments in my lifetime, but these are a good start. Here’s a prediction, though - my next major dad moment will come when Gareth is able to express himself without the help of others. I’m going to be a blubbering mess when that happens.

And then I’m going to worry about all the stuff Brandy and I have said in front of him over the years. There are some words he definitely knows that shouldn’t be repeated in polite company.

As eloquently as I would like to state this, the direct route is rather preferred: this is fucked up.

MotherJones.com has an amazing and infuriating story available that looks into the Judge Rotenberg Center, a school in Massachusetts that specializes in behavior modification for both low and high functioning children with mental disabilities and/or behavior disorders.

That there is a school specifically for this is not that amazing, but that this school relies almost exclusively on electroshock aversion therapy is! One child was shocked upwards of 5,000 times in a single day before staff at the school concluded that he was not likely to respond to such methods.

Give the entire article a read. It’s definitely worth it. When you’re done, come back here for some other gathered info.

Obviously, this school hasn’t just been doing this recently. It has been going on for decades with little ongoing public outcry. The school has been challenged several times and has managed to come out the victor. Interestingly, New York as a state has outlawed the use of electroshock therapy for these types of treatments, but the state itself facilitates the placement of some of its children across the state line for admission into the JRC. The Massachusetts legislature has recently introduced a bill that would also eliminate electroshock, but it has yet to go anywhere. Judging by the potential political influence of the multi-million dollar center and the vocal advocation of the parents of attending students, it is possible that said legislation could die and the JRC could continue on its merry way.

Of interest are the following links:

http://www.kevinleitch.co.uk/wp/?p=374 - A blog entry that discusses a number of topics regarding the JRC. Be absolutely certain to scroll down to the comments and check out the information left by “Jeff”, and then scroll down further to “ann”, a one-time JRC employee, who talks about why the JRC isn’t as bad as everybody thinks. Another former JRC employee then pipes up to let “ann” know that things aren’t as rosy as she remembers them being.

http://www.judgerc.org/ - The Judge Rotenberg Center home page. Looks pretty pleasant, doesn’t it? The image at the top of this entry is from the site. It shows two kids out enjoying a bike ride in the sun, which would seem a pretty happy thing until you notice that both are wearing backpacks chock full of batteries and the devices that administer electric shocks to their limbs and stomach.

http://archive.seacoastonline.com/news/06012006/health/105752.htm - An AP article from last year covering largely the same ground as the Mother Jones article. Again, we see the electroshock backpack on a student. This photo, however, seems to show that there is a shock device attached to the straps themselves to ensure that the student receives a jolt if he attempts to remove the pack.

http://www.wbur.org/news/2006/JRCReport.pdf - A report put together by the New York State Education Department of what was observed at the JRC during an unannounced visit in 2006. Half of the students sent there by the state of New York were approved for shock aversion therapy.

http://judgerotenbergcenter.blogspot.com/ - A blog of testimonials from JRC supporters.

http://www.judgerc.org/ResponsetoGonnermanArticle.pdf - And here is Matthew Israel’s response to the Mother Jones article!

It’s chilling to know that there are parents out there who approach their children like a lot of people approach their dogs - by strapping them with a shocking collar to punish bad behavior - but I guess the larger question is this: when a child becomes a severe danger to him/herself and every one around them, what is the final recourse? Medication to the point of constant sedation? Severe physical isolation? Does this level of aversion therapy have some degree of utility?

As I’m married to a special education teacher who has focused on autism in her career, I can imagine I’ll get some first hand input as soon as she reads this or as soon as I bring it up in conversation. I’m curious to get her take on it from the educator’s perspective.

Speaking of perspective, let’s close this out with a picture of a JRC student receiving a gift from Santa Claus … while he’s wearing a fanny pack containing his electroshock gear.

So the big ol’ PA budget was signed into law yesterday. Building on my earlier entry regarding Bush’s vow to veto increases to child welfare/medical insurance programs, here’s a portion of what just went into the new PA budget:

The $27.2 billion budget will boost spending by 3.2 percent and includes no increases of broad-based taxes or fees. Substantial increases are included for pre-kindergarten programs in public schools, laptop computers in high schools, day care for children of low-income families and home and community services for thousands of elderly and mentally and physically disabled people. (The total excludes about $300 million that is being diverted into a special fund. Adding that would push total spending to $27.5 billion - an increase of 4.4 percent.)

The fact sheet over at the PA Budget web site breaks things out a little bit more:

Cover All Kids – Second-year funding to provide access to affordable, comprehensive health care coverage for all uninsured children in Pennsylvania. Includes $99 million in state funds and $212.5 million in federal funds to provide access to affordable, comprehensive health care coverage for 75,000 children, an enrollment increase of 10 percent. Since Governor Rendell’s plan for universal health care for children was adopted last fall, 7,900 additional children have been signed up for health insurance.

Early Intervention – $292.8 million in state funds, an increase of $48.8 million or 20 percent, to serve 6,325 eligible at-risk infants, toddlers and children up to age five with developmental delays. Early intervention services minimize the need for special education and related services and assist families in meeting the special needs of their children.

Autism – $23 million in state and federal funds, an $18.2 million increase, for autism programs for adults, including prepaid inpatient health care, statewide training and technical assistance, information outreach, assessment procedures and program monitoring.

Note the $215.2 million coming from the federal government. That’s a majority chunk of the Cover All Kids initiative. Congress would like to increase that amount. Bush would like to dump it for tax incentives to prod families to buy their own health insurance. Reducing the allocation of state funds would have a negative impact on PA’s Children’s Health Insurance Program (CHIP) and leave some kids in the lurch.

Fearing that putting more money into state health care programs for children will make the idea of universal health care too palatable, our esteemed President has vowed to veto any substantial increase in federal funds for state child insurance programs.

No, that’s not the reason given. What’s stated is that increasing the budget for such programs will lead to increased taxes while reducing campaign contributions from the private insurance industry. Ack, no, that second part wasn’t in there, but that industry did get a nod even though it has done an incredibly poor job of covering uninsured children throughout its entire existence. Rest assured that they’ll get around to it… eventually… when they can figure out either how to make a profit from it or how to get enough substantial breaks from the government to cover the losses.

So why is this of any interest to me? I’m not poor. My family benefits from two incomes and fantastic insurance coverage through my employer. Well, it’s because those state health care programs work to my benefit for Gareth’s care. Were it not for state assistance, Gareth would likely not have the nursing coverage he needs to attend school (and, admittedly, to allow Brandy and I to sleep a few hours each night). He would not have access to his speech computer, mobility equipment, and life-enabling surgeries. Let’s not forget the maintenance equipment like suction pumps and canisters, syringes (3cc, 5cc, and 60cc), liquid diet ($300/month in PediaSure), traches, trache ties, mist tubing and masks, et cetera.

I guess you could say I’ve been spoiled by the great health programs available here in PA. If a lack of federal funding made them disappear, we would probably go bankrupt. As it is, we can live with a degree of comfort and spend our energy and money on making sure Gareth has the most fulfilling life possible.

I’m not usually a fan of “for the children” rhetoric, but in this case, I’m all for it.

Of course, we’re not out of the woods even if this program is expanded. One of the goals in drafting new legislation is to close loopholes that allow families above the poverty level to benefit from such services. Ours is exactly that. If the holes are closed too tightly without exclusions for disabled children, we’d be out of luck.

I saw a home listing in the Sunday CDT for a place in Bellefonte just under $160K and sporting the descriptive term “accessible”. Brandy and I went to check it out earlier this evening only to discover that “accessible” in this case translated into “plywood ramp in garage, all other entrances inaccessible, floors covered in thick carpeting that would impede wheelchair movement, doors and hallways too small for proper chair maneuverability”.

That’s a lot of words, though, so it’s no wonder the listing didn’t say that.

I’ve never seen a place where the kitchen is smaller than our current bathroom.

Needless to say, we’re passing on this one. Bit of a shame, too. It had a good size garage (which I desperately covet) and was a mere three blocks from Bellefonte Elementary. It would have been great to be so close to “downtown” Bellefonte.

Oh well, we’ll just have to keep our eyes open for other possibilities.