September 2010

Turn it on!

by Mary on September 25, 2010

In the past few days, the J-man has learned to turn on (and off) lights and a fan. I’m fine with the lights flashing, but the fan is a little scary, so we leave it unplugged when he’s going to be in the room. It really seems to be an “all of a sudden” insight for him, that HE can make those things happen. Before, he would take our hands and lead us to whatever he wanted turned on, possibly even put our hand on the switch… but wait for us to actually do it. Not anymore!

It seems like a lot of things have suddenly turned on for him. Part of the J-man’s IEP is that he will do the motions in a song 50% of the time. This is actually a goal from last year, simplified, because last year the goal was 80%, and he just couldn’t do it. It wasn’t like they didn’t work VERY hard on this goal… he just wasn’t proprioceptively ready to do it yet. He understood what they wanted him to do, and we worked at home on signing along with Rachel and such, but really, it just wasn’t happening.

Lately though, he’s been doing motions with songs! A lot! I realize this sounds like very little to some people (and watching Dale Jr instinctively do motions makes me understand how people are incredulous that this is a goal on an IEP), but it’s HUGE for the J-man.

He’s also suddenly trying to sing along with certain songs. We watch a lot of Pinky Dinky Doo here and Pinky sings quite a bit during the show. Not only that, she uses the same phrases when she’s trying to come up with a solution (“It’s time for me to think big!” “Come on Pink, THINK!”) The J-man is doing his level best to speak along with the phrases she commonly uses, and he tries to speak along with all of the songs – while requiring Mama and/or Daddy to sing along. I realize that this is echolalia, and that the goal is eventually spontaneous language, but from what I gather spontaneous language comes after echolalia for most kids in language progression.

It’s like a switch has been flipped. And I say, TURN IT ON!

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In Remembrance of My Hero

by Tim on September 23, 2010

As long-time readers may remember, my grandmother passed away this year on Valentine’s Day after a long fight against ovarian cancer. The loss we’ve felt as a family is nearly impossible to describe. Not a day goes by that I don’t think about her. I miss her so much I can hardly type this.

Today would have been her 92nd birthday. I think it should now be declared a national holiday. I know she would have told me to honor her not by making such a fuss on a blog but by living a good life, fighting for my family above all else, helping others every chance I can, and being true to who I am. I’d add to that kicking as much butt in life as possible.

This year has been hard. There have been many weeks where it’s just been grinding things out. While I started the year with many goals of diving headlong into the autism world and making a difference not just at home but everywhere else I could, it hasn’t really worked out the way I’d hoped. My efforts for this year have turned more toward something that has felt at times like survival, something deeply personal. My posts have become much less frequent, my ability to keep up with comments and correspondence greatly lessened. So many of you have been supportive, and that means more to me than I can say. In recent weeks, I’ve tried to focus more on what’s going on in our house, taking better care of us and myself, and trying to rein in my not-so-great health problems.

She was our matriarch, our cheerleader, our safe and welcome place. I’ve thought a lot about Mamaw being a 20+ year survivor of breast cancer before she died from ovarian cancer this year. I’ve thought about her entire life, all of her challenges, everything she overcame, and how she did all of it to the very last with honor, dignity, and grace. She was tireless, relentless, irrepressible, and just plain tough. It would take several internets to describe everything I learned from her.

Lately one of those lessons has been present almost constantly in my mind. The combination of determination, hard work, faith, time, and love can overcome most anything, but it’s up to you to do what’s necessary because nobody is going to do it for you. She’s physically gone now. She imparted all the wisdom to me that she could. Now it’s up to me to live like I take that seriously. You’d think at almost 37 years old that I would have figured that out by now, or perhaps figuring it out and living it out are two much more different ideas than I realized until now.

I’ve gotten back into running again and am actually eating a lot better. I’m treating my body less like an abused machine. I’ve lost about 10 pounds so far, and while my knees are barely hanging on, running has been like opening up my windows and airing out all the stale parts of myself. I think about her a lot when I’m out running. I think about how much my body hurts, and I think about all the physical pain she endured, that she endured with such toughness, will, and dignity. Then I straighten up and lift my pace.

I’m running toward something; I get that now. You can only bemoan life and circumstances and feel sorry for yourself but so much until it drains everything from you and leaves you no further along than you were. She always kept trying to tell me that. I’m now running toward a me who is strong enough to be a good dad to two perfect boys and a good husband to the love of my life.

I printed the original post I wrote two years ago in honor of her and gave it to her before she had surgery to try to remove her ovarian cancer several months before she died. She said she kept it with her all the time and read it almost every day, and more often on days she wasn’t feeling well. As I go back and reread it now, some things are hard to believe. I really did think she’d live forever. The last time I saw her as I was getting ready to leave and make the long drive home she asked me, “Do you really believe all that about me?” I said, “Every bit of it, and so much more.”

After she died, I brought home a couple of boxes of things we’d given to her over the years, cards and letters I’d sent her from as far back as when I was very little that she’d actually saved, pictures, other items I’ll always treasure, and that printed copy of that blog post she carried around with her until she died. Below is that post in its entirety.

I miss you terribly, Mamaw. I love you. You’ll always be my hero.


September 29, 2008

“What My Hero Taught Me About Parenting an Autistic Child”

For our big trip recently, we went to my grandmother’s 90th birthday party. To say she is our family matriarch is a profound understatement. Four generations of our family piled into her house to both celebrate her and how triumphantly she has lived through everything she has overcome.

She looks about as much like 90 as our cats look like giraffes. I fully expect her to live to be 125. It was only a couple of years ago that we finally talked her out of cleaning her own gutters. She was talking at the party about needing to get out and powerwash her siding.

She lost her first husband to health complications from him being a coal miner when she was only 25. She became a widowed single mom to two kids – my dad who was six at the time and my uncle who was only a few months old. She became a waitress and sometimes walked to work with a pistol in her pocket. The Kentucky coalfields were rough places. She literally walked uphill both ways to work and home again.

She kept a couple of pigs that became meat during the winter and traded molded butter she made for groceries. They lived off that, biscuits, and whatever they could grow or raise. I doubt she ever slept. And still, poor as dirt as they were, if any of the neighbors’ kids were hungry and stopped by, she would feed them without thinking twice about it.

Throughout my family’s struggles growing up, she always fed us and bought us clothes to wear and made sure we got to school. We’d play cards after school and I’d feel completely content with the world. When I was in college, she would give me everything in her house when I came to visit. My car would be packed full of groceries, things she had canned, a hundred rolls of toilet paper, and anything else that she thought I’d need.

But more than anything, I always knew – and still know – that whenever I’m at her house, I am always safe and loved. Whatever we’ve needed, she’s been there for us. I don’t know how she’s afforded half of it. She’s treated everyone like family. She’s done so much for people that the only person who knows even half of what she’s done is her.

Many years ago, she had breast cancer. Watching her go through chemo was painful, though obviously nothing like all she herself had to endure. To watch such a formidable woman struggle that hard made the gravity of her fight clear. She had fought off so many challenges like a black belt karate master that seeing her go near the brink was uncharted for all of us. My heart ached for her. But she won the fight, and won triumphantly – because that’s how she does things.

There is no gift I can give her to adequately express how grateful I am that she is my grandmother, and how happy I am that she lived long enough to see me become a father and try to emulate as a parent as best I can some of the lessons she embodies. These past three years, I have drawn on them a lot as I have tried to understand how best I can be a good parent to our little autistic wonder.

There are so many lessons I could share, but here are at least some. I hope her wisdom means something to you too.

  • Your children deserve everything you can give them. You do whatever it takes to make sure they realize their full potential, even if hell itself should bar the way. Nothing is more important.
  • Make your home a safe, loving, warm place for your children. When they walk through that front door, they need to feel that everything is OK and that everything they need is there.
  • When an obstacle appears between you and what you’re working toward, you take your fists and beat it down. Turning around isn’t an option. Kicking butt is.
  • If God made it, you love it. God don’t make no mistakes.
  • Making mistakes, failing, and generally making a mess of things is fine. Giving up isn’t.
  • If someone you love screws up, the best way to help them through it is to love them that much more.
  • You can’t fix the past. It happened; make your peace with it and move on. Your family needs you in the present, not in the past.
  • Whoever comes through your front door, you welcome them and hand them something to eat. Make it to where if a guest goes hungry, it’s their fault. Food for her is a symbol of welcome, respect, and care.
  • Most problems in your life can be solved by hard work and time. Most of the rest can be solved with harder work and more time.
  • Be direct, constructive, and honest. There’s no need to dance around something when being direct would make the situation much better off. Life’s too precious to waste time talking around stuff.
  • Be generous to the point of extravagance and expect nothing in return. Somehow it seems to work out that you get repaid manyfold. She’s both generous and thrifty and somehow makes it all work out fine.
  • Be someone people feel they can turn to without hesitation and without shame. Be someone who accepts others right where they are.
  • One of the best signs that you’ve lived your life well is that the children surrounding you at your 90th birthday turned out fine.
  • When in doubt, go have a cookie and a cup of coffee and you’ll feel right as rain. Hot biscuits, gravy, and some apple butter work just fine too.
mamaw-and-us.jpg

(90 years old my foot.)

Happy Birthday, Mamaw!!

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Last night we had our more-or-less-once-a-month family night at school, which basically means many of the parents from the three levels of autism classes (Pre-K, K-2nd, 3rd-5th) get together at school either with the teachers or with outside experts from the community and discuss a particular issue that we’re all struggling with. Not surprisingly, the issue we choose to focus on for the month always fans out into a multitude of other things we’re dealing with.

These are always great evenings, both for learning so much from each other and for fellowship with other parents. It often connects us with some great resources in the community, too. For example, we’re meeting in a couple of weeks with the special needs trust attorney we connected with at a previous family night.

One major issue that dawned on me last night was that without these nights at school there’s so much valuable expertise and information we’d miss out on. The collective experience between the dozen or so families that regularly come to these, the teachers and therapists, and experts from the community who come speak to us is amazing. We get together in the room and share what we know, have learned from our own experience, or found out from our research. We are in a sense passing down an oral history of what we’ve learned to each member in our little tribe of great parents.

It’s a godsend that we can do this, but it’s also incredibly inefficient. We’re all the time reinventing the wheel. Someone goes through the process of filling out paperwork for disability services or getting a handicap placard or resubmitting claims to Medicaid, learns a lot, but that learning isn’t easily preserved. So the next person who goes through it may not know which of us to ask, tries to get some part of the way down the road themselves, gets as lost as the person before them did, gets frustrated, and so on. Eventually they’ll find a person who has already been through whatever the problem is (well, assuming someone has), talk to them, and start to get unstuck. But in the meantime, so much time and energy is lost – time and energy none of us have to spare. Facebook groups, listserves, forums, Twitter, blogs, etc. all have an equivalent problem – little of the information posted is preserved in a way that can easily be accessed later by the entire autism community.

But how do we preserve this knowledge? I’ve given serious thought to developing a wiki for our school. That would at least be a start. Obviously there’s information everywhere online, but that’s both a blessing and a curse. There’s so much information scattered everywhere, but it’s rarely that organized, often out-of-date, wrong, or perhaps even intentionally false, and quickly too overwhelming to do anything with. I don’t need eleventybillion pages of information about something; I just want someone to give me the freakin’ answer to my question.

I dream of a central repository of process knowledge, “How do I do X?” sorts of information and instruction sets. Yeah, I realize that a lot of our challenges aren’t easily reduced to instruction sets, but a number of things can be. For many other issues, at least people can generate a few, high-quality ideas to get people started or nudged a few more feet down the path. I know it’d be a monumental undertaking, but collectively we are wasting God knows how many billions of hours a year trying to find information we need about how to do everything from the simple to the complex.

Would it be possible just to have some resource that filters out all the roaring noise about vaccines, causes and cures, controversial treatments, and whatever else and just gives practical, day-to-day information we need like how to fill out this frackin’ form for disability services or what the hell all these acronyms mean? The end result of all of our yelling and infighting and carrying on is that this sort of resource does not exist because what energy we have left over after being parents is consumed by all this other stuff. And it’s great that we are spending so much time and effort on the critical work of educating the world about autism, but it’s also essential that we remember to educate each other on how to live and do the best for our children.

I know it’s unrealistic to expect one site to handle everything, but humor the ideal a little. Even the process of aiming toward that goal should yield something a bazillion times better than what we have now. I’d rather have potentially ridiculous and unrealistic goals than have all of us keep pounding our keyboards in frustration.

Anybody interested in talking about this further? It would obviously be an enormous undertaking requiring a whole lot of people, but there are more than a whole lot of us out there and I know we’re all tired of banging our heads against our computers trying to find what we need. Maybe one of the greatest gifts we can give each other is saved time. Together we are stronger than we are on our own.

Oral traditions eventually developed writing, libraries, and ways to communicate large quantities of information quickly. In a way, maybe that’s a roadmap for us, too. Perhaps we don’t even need a map. Maybe all we need is to just sit down and start writing and connecting the dots for each other.

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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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