Dragon, Dysgraphia and Dictated Discourse

This is a little like walking when you're used to flying. Yikes. Today, I'm dictating this post with Dragon NaturallySpeaking, the speech-to-text software that doctors and lawyers use and that more people with disabilities probably could use. I can already tell this is going to take me awhile. [Period.] It's a very cool tool, and I can see the potential, but yikes. What comes naturally to me with fingers on the keyboard is a very halting process with Dragon. At least so far. Old dog. New tricks.

[Period. New paragraph. Select "could." Italicize.]

So why bother? I'm attempting to become more proficient in Dragon so that I can support son Fickle Fan as he learns to use dictation this semester. FF is taking a pre-writing course at Ivy Tech. (He got an A in his fall semester pre-reading course, by the way!) Trouble is, FF has a pretty severe case of "dysgraphia," which is a frustrating combination of indecipherable handwriting, atrocious spelling, frequently omitted words, and organizational challenges all wrapped up into a nasty little package that affects many of our children on the autism spectrum. 

We are working with Easter Seals Crossroads to help FF with assistive technologies that might enable him to become a more independent writer. That includes training in the use of:

• Dragon, version 12; 
• a LiveScribe "smartpen," that could be useful for recording notes in the classroom;
• and special software designed for writers who have dysgraphia/dyslexia. 

He'll need a few different arrows in his writing quiver. Dragon, for instance, might be great for doing homework, but talking aloud into a headset mic doesn't work so well in a classroom. So far, FF has begun his training with Dragon and he's doing well, but it will take some time for him to become comfortable with using it and the other tech gadgets. Having all the tech toys isn't enough. Training is essential. 

[Okay, I'm doing lots of keyboard cheating in order to correct misheard words, insert new text, and navigate on the page. Ugh. It's great, though, that Dragon allows for a combination of speech-to-text and keyboarding. Makes things faster.]

When the representative from Crossroads initially came to evaluate FF, he asked FF to tell him in his own words about a movie he'd seen. FF launched into an accurate synopsis and analysis of Blood Diamond, complete with commentary about director Edward Zwick's work and Leonardo DiCaprio's performance as a South African diamond smuggler. When asked to turn around and type that up on the laptop, FF got about five words down before giving up in frustration. You get the point. It's all upstairs; he just can't get it to translate to his fingertips. When he first sat down with FF, by the way, the Crossroads rep asked FF to write something on paper. FF obligingly scrawled, "I hate writeing!" and handed it back with one of those "and-now-you-know-how-I-feel-about-it" smiles. 

[Now, watch as I stand, death defyingly, on a soapbox mounted on a Dragon...so to speak.]

Dysgraphia is holding our children back. We need our scientists to look at 1) how dysgraphia occurs neurologically and 2) effective prevention and treatment. That means lots more research. As it is, dysgraphia seems to be a poor stepchild in the autism research world, and yet it's probably Public Enemy #2, right behind communication, as the Most Frustrating Manifestation of autism. 

Maybe we could start with an agreed-upon definition. Here's Wikipedia's explanation for your perusal. It's often misunderstood--many people think of it as just poor handwriting or a form of dyslexia--and bring out the lined paper to practice handwriting. I'm no expert but I'm betting that in the majority of cases, practicing big B, little b is not helping and is a waste of valuable OT time. Some teachers are still attributing dysgraphia in students on the spectrum to laziness. And in many cases, it isn't identified at all until middle or high school because teachers and parents dismiss it as just a part of his autism. I think we're probably guilty there. 

Having dysgraphia does not mean you are intellectually impaired. In fact, one of the most insidious things about dysgraphia is that it--just like a lack of communications--often makes our children appear more cognitively impaired than they really are. Thus there's this gap between what a student is capable of learning and what he's capable of producing or regurgitating in the classroom (at least in traditional pen-and-paper ways). 

Moreover, I'll bet if you did the data collection, you would find that dysgraphia is probably one of the most common triggers of meltdowns, rages, and low self-esteem in school-age ASD children. Effective treatment would benefit not just our children, but also teachers and entire families who must deal with the seismic repercussions every time little Johnny is assigned a 5-paragraph essay. And those reprecussions include suspensions, loss of work for parents, depression, and dropping out of school.

And you won't find this in the Wikipedia article, or maybe anywhere else, but I have one of those niggling ASD parent suspicions that dysgraphia is also associated with or even the cause of the math problems many of our kids begin exhibiting in about the 3rd or 4th grades--despite what seemed like a natural knack for math concepts before that age. We need more research.

Some of our ASD kids are capable writers and, with the right supports, make it through high school and even college. Sadly, they're the very few exceptions to the rule. I believe that if our children could find ways to prevent/overcome or at least sidestep their dysgraphia issues, many of them could not only go a lot farther in school, but eventually they'd have a much broader choice of employment opportunities. (More on that, next post.)

[Buggers. I've slipped back into using the keyboard.]

Meanwhile, FF struggles to get his thoughts from brain to paper. Despite years of occupational therapy, he continues to have problems with the scale of his letters, mixing upper and lowercase, spelling, word omission, sentence structure, and a cargo-load of emotional baggage and pressure that comes with the writing territory. In fact, FF has 11 of the 14 symptoms listed in that Wikipedia article on dysgraphia. It doesn't look good in a college writing class.

We have work to do. In this age of common standards and strict requirements, has anyone else found ways of conquering the dysgraphia monster in a college setting, particularly in courses where extensive papers or daily journals are required?

[Question mark. New paragraph. Exit Word 2010. Thank you, Dragon.]

T in T: The Facebook Version

Thank you, readers! Last week my blog climbed past 3,000 page views, which is a nice thing. Why? I don't really know. Clueless blogger here. Something about stat reporting or reaching a certain audience level. Beats me. I know it's probably a small pittance compared to the thousands of hits many of my blogger bretheran get every day. That's okay. The reason I started Two in Transition was to share our experiences as a family so that others could learn from the roads we've traveled--both the ones nicely paved and those with more potholes than road. 

Some of the things I share, though, are a collection of resources, other blogs and transition-related articles that pop up in my inbox throughout the week. You don't always see those here. In fact, rarely. They show up on Side B of Two in Transition--the Two in Transition facebook site. "What?!?" you shout, overdramatically, "a Facebook site! No one told me there was a T in T Facebook site!!"  

Okay, yeah, maybe not in so many words. It's because I'm still sort of a newbie at connecting all the dots between the blog and FB and Twitter and Stubbedmytoe and oh, I don't know. Like I said, not very good at the social self-promotion thing. But, yes, there is a Facebook T in T. You can get to it by clicking that "Like us on Facebook" button over there on the righthand side of this page or by going to Facebook and putting TwoinTransition in the search window. It'll come up with twointransition.blogspot.com--that's us!

So from there you know the drill: When the Two in Transition page pops up, you need to "Like" the page. If you don't do that, you'll see what's there, but in the future you won't get to see things like:

• the CNN video clip of the Germany company hiring worker's with Asperger's
• Autism After 16's article on transition planning
• the article about the mother who gave her son an iPhone with an 18-point contract
• Laura Shumaker's story about a young man with Asperger's who's doing voiceover work
• the Autism Speaks' article, "Mounting Evidence of Critical Need for Adult Transition Support"

Sure, I could give you links to all those things right here, I guess. But if you go the FB site and Like the page, you become a T in T fan and as such, are entitled to receive notice of new blogposts whenever I get around to posting them! Woo hoo! And that's another thing: I hereby promise that I won't whitewash or graffitti bomb your wall with T in T minute-by-minute postings. I'm pretty selective about the resources I share and they all center around transition issues or teens on the spectrum in some shape or form. 

"Yikes!" you say. "Why is that ugly gray photo up there on the T in T banner?" There was a method to my madness there. But, yes, I admit it's none too pretty. This pic was taken from our front porch on December 26. The previous,  much more colorful shot, was also taken from our front porch, same view, in autumn. The next shot will also be taken--you guessed it!--from our front porch, some time in May. Transition--fall, winter, spring, summer. Get it?? Okay, yes, the picture is still gray and fugly. I'll see what I can do. 

Next issue: Talk amongst yourselves! You are urged, encouraged, hereby empowered, and will not be judged (at least not by me...publicly :-) ) for commenting on posts or on resources on the the T in T Facebook page. Transition is probably the least talked about and, I would venture to say, least researched issue in the disability community. And the one that's probably most in need of attention. And, lord knows, those of us going through transition or preparing for it need to talk about it! We need to understand benefits, guardianship, special needs trusts, postsecondary ed options, housing, loneliness, self-advocacy, depression, voting rights, supported employment and independence. So we have to talk it up. To our bloggers, our educators, our physicians, and, most of all, to our legislators. 

You can start with me. I can take it. Tell me what you think!

The Silver Lining Shuffle and Ten Tips to Prevent Epic Meltdowns

Two steps forward, one step back. Once again, it's the dance we all love: the Spectrum Shuffle. But this one comes with a Silver Lining.

Okay, so let me preface this by saying that our holidays have been lovely. Really. But I've been reading about other autism families with little ones who are struggling with loss of routine, out-of-whack expectations, toys that just don't make them ooh and ah like their parents had hoped, and of course, epic meltdowns. My little ones are now young adults on the spectrum so, of course, you'd all like to know that life gets better and the meltdowns melt away. Here's the thing: It gets...different. Mostly better, in our case, but definitely different. I'd really like to say that the meltdowns/outbursts/rages completely go away.  But I can't. Because Christmas Eve, son FF, who is now 18, had a doozy of a public outburst/rage episode--something he hasn't experienced since that incident a year ago in high school when he was feeling insulted and belittled. You can read about that one here.  So those tips I'm going to drop on you below? I'm the first one to admit that they're not infallible. 

As all parents of kids on the spectrum do, we've learned a lot of lessons as FF went through his very frequent, gut wrenching, often aggressive, always exhausting tantrums/rages/whatevers ("meltdown" is too nice of a word for what we went through). Around the holidays, for instance, we learned that it was too much for us to travel seven hours to be with family. Eventually, FF acclimated and learned to love traveling to Michigan for Thanksgiving, but we needed recovery time and making the trek north just a short month later was just too much.  

I don't need to go into all the gory details of this particular episode. It was embarrassing for him and for his sister and dad. I wasn't there. Was there a why? Sort of. FF has been sick with ear infections, a horrible cough, and frustrating congestion for several weeks. This doesn't excuse what happened; it's just an explanation. By Christmas Eve he'd been on antibiotics for several days. He wanted to go to church, his mood was good, and so we let him. Let's just say, nothing good happened from that point on. 

We know that FF in the midst of a rage episode just isn't FF. He's a completely different person. Jeckyl and Hyde. I think almost every family with kids on the spectrum would agree with that description. Sadly, the people who see and experience FF during the episode don't know that. I'm so concerned that people who see him during a rage will believe that's who FF is, or worse, that's who people on the spectrum are. 

Christmas Eve dinner--after returning from the public debacle--was not the fun, joyous occasion we had hoped it would be. Daughter Dearest sequestered herself safely away in the den, lowering her blood pressure by watching It's a Wonderful Life and drinking her egg nog in peace--something we encouraged. Another hard lesson we've learned through the years is that FF and DD can set each other off. Like some sort of instantaneous, infectious anger that leaps from one to the other.  Separate corners is a much better way to go. 

The good news is that FF recovered. He always does. And he apologized to both DD and his dad. Christmas was another day. He appreciated and enjoyed his gifts, had a great time, chilled out. This past week he's been to Les Miserables, a hockey game, Silver Linings Playbook--all of which he loved--and work, which went fine. 

Short sidenote here: Silver Linings is excellent, but definitely for a mature audience. The film is a quirky look at how mental illnesses impact relationships, and it covers a lot of territory including use of medications, bipolar disorder and OCD, anger, addictions and adultery. There's brief nudity and lots of swearing. But it's also funny and uplifting and carries a couple of great messages. Almost every character in the film has some sort of mental health issue--if not a full-fledged disorder, then certainly a challenge. There's even a neighbor character who shows up early in the movie who I suspect the scriptwriter was suggesting has Asperger's--he keeps wanting to film the family in the midst of a mental health crisis. The two-steps-forward part of our shuffle is that FF--who's a film fanatic--loved and understood the movie and "got" the mental health challenges that all the characters were trying to overcome. It's wonderful to see him make those connnections.

So onward. FF's still coughing. Hacking away in the backgroud as I write this. For the first time in six years, we're headed back to see an ear, nose and throat doc. Sigh. I thought we were over this. 

Okay, so we might never be over this. But, like I said, we've learned a few things along the Meandering Meltdown Way. Here are a few of them: 

1. Change is not the problem. In FF's case it wasn't change that caused his early meltdowns; it was loss. Kids on the spectrum (and their parents) should not be taught to fear change. It's a part of life. It's the loss of something that may require you to do some explaining. "This afternoon we'll be going to the auditorium during last period. That means that just for today, we won't be going to the library, but we'll seeing a presentation with the whole school. You can still go to the library tomorrow if you'd like."  Or, "Tomorrow, we start Winter Break. That means you'll get to stay home and play. You won't see all of your classmates during break, but you will get to see them again on January 3rd." If possible, specify when the thing/event/person lost can be regained/experienced/seen again. When the change will result in an irretrievable loss, explain how people deal with those feelings. Get help from a therapist if possible. 
2. Physical discomfort often triggers a behavioral Mt. Saint Helens. We've learned to check the ears. Always. But although antibiotics may treat the infection eventually, it doesn't always get the job done soon enough (see above). And sometimes the behavioral eruption is what clued us in to the physical problem in the first place. And, yep, the infections rarely ever hurt. One monumental school eruption occurred the day after FF had fractured his wrist--unbeknownst to me. 
3. Medications are sometimes a must.  I've talked about that before, here. Once you've ruled out physical illness or pain or something (or someone) else that may be triggering anxieties or outbursts, it's time to talk to a medical expert. 
4. Home for the holidays is more than just a song. Our families learned to expect us only at certain times of the year. Not for Christmas or New Years. Too much, too much, too much. 
5. An ounce of technology equals hours of eruption prevention. He now has his own tech bag for trips. DS, iPod, phone, tablet. Games, music, audio books. And don't forget to power 'em up. 
6. Take his perspective. As crazy as it may seem at the time, take his side and empathize with him. Try to understand where he's coming from and why. You may need to gain the sleuthing powers of a Sherlock Holmes, but if your child has someone in his corner who understands that, for instance, just the sight of a drawing of a campfire or a candle causes extremely high anxiety, it could prevent a 20-minute screaming breakdown. FF's hatred of having his photo taken meant that he didn't appear in every family photo. For several years, he didn't have a school photo taken. It's not the end of the world.
7. Take a break. Downtime (not time out!) in a quiet room with the tech toys, photo albums, presidential campaign buttons, collection of Zits! cartoons, or whatever your child's interest of choice happens to be can be a lifesaver. And taking a break goes for adult caregivers too! Tag team it if you can, especially when they're young.
8. Get some exercise. Walking usually works, but throwing the football with dad or a cousin also helps a lot. 
9. Encourage emotional growth and introspection. As they get older, of course. Make use of those blankety-blank teachable moments to praise their sincere apologies, their use of self-prevention strategies, and their newfound insights into their own triggers, anxieties and stressors. FF has come a long way in understanding his own particular flavor of autism and his now much-less-frequent outbursts. And now that he's at that point, he's more open to working with a psychologist (with expertise in autism) on these issues.
10. Forgive and start again.  I make sure FF knows that we still love him and that we forgive him and that--if he's in the midst of an episode--that it won't last and that he CAN and WILL be able to calm down and start again. He gets amnesty. It doesn't mean we won't talk about what happened or that inappropriate behavior gets a pass. It doesn't. But he has to know and understand that the horrible, shameful I've-ruined-my-life-and-everyone-I-know-will-now-hate-me feeling will go away. Otherwise, his self-esteem plummets, he can't recover, and the eruptions are more likely to recur. 

Obviously, one size does not fit all. Every child, every family is different. Adjust accordingly. Excelsior! (You have to see the movie.)