May 2008

This Little Light

by Tim on May 30, 2008

I originally wasn’t going to weigh in on the recent, reprehensible treatment of Alex Barton by his kindergarten teacher in St. Lucie County, FL because it’s been written and blogged about at length all over the Web. I didn’t really know what I could add to it. But prominent bloggers who write about issues related to autistic children are calling for all who stand with Alex and his mother, Melissa Barton, to post their thoughts and show solidarity both with them and autistic children everywhere.

To briefly catch you up if you missed this, Alex Barton is a five-year-old boy on the autistic spectrum who – I can’t believe I’m writing this – was voted out of his kindergarten classroom after his teacher, Wendy Portillo, polled the class about whether they wanted him removed from class for the day. The class voted for him to leave by a count of 14-2. I wish I was talking about some alternate, bizarro, Survivor-esque universe, but I’m not.

[To catch up on the latest news, here’s an article from the Palm Beach Post. There’s a great post at Asperger Square 8 that you also must read.]

For what my thoughts are worth, here they are.

One of my biggest fears for J-Man is that other kids will regularly bully him in school just because he is ‘different’. Honestly, I fully expect it, and the hurt I already feel is terrible. He most likely will start preschool in our county’s autistic children’s program this fall. I confess my breathing gets shallower just writing about that. This will be a major transition for him, obviously, and I don’t need the fear of bullies making that worse. But that will be something I’ll have to deal with.

When I read that afterwards Alex kept repeating “I’m not special,” my heart broke. I tried to imagine J-Man sitting in the floor repeating those three words over and over again. I couldn’t. It hurt more than I could bear. Even writing this hurts. I can’t imagine being Melissa Barton right now.

As parents, we need to know that we can count on our children’s teachers, and for the most part, I believe we can. J-Man has had excellent teachers and therapists so far, and we are thankful every day for them. We need to know that people at our schools will be there to help our kids be the best they can be and serve as a voice that counters bullies and other people who might belittle them. We need to know we can count on them to treat our children as special and uniquely wonderful, not fear having to count them among the bullies.

Regardless of what anyone believes about children inherently wanting to rebel against their parents and adults in general, adults still have an incalculably powerful influence on them. When an authority figure teaches children, especially at that age, that excluding people who are ‘different’ from the community is OK, what do you think they are learning? What do you think that will translate into as these kids progress through school and into adult life? What kind of future are we creating as a result?

In a world overflowing with messages to exclude and reject those we do not like, those who are different, and those who ‘make us’ feel uncomfortable, there must be voices that proclaim the inherent and immeasurable worth in each person. We must be those voices.

Every kid needs the authority figures in their lives to accept them where they are. That doesn’t mean we’re not supposed to set boundaries and have rules and expectations. We start with a fundamental acceptance of the truth that every child, regardless of their abilities, has infinite worth. That is the foundation we must build everything else off of.

There are truths in our society that are self-evident and inviolable. We don’t get to put these things up for a psuedo-democratic vote. You don’t get to decide Alex’s or anyone else’s innate worth as a person and member of our society. That kind of world shouldn’t be allowed outside your TV. If you watch that kind of junk and take it seriously as something to emulate in your ‘real’ life, it’s time to go bury your TV.

In case I haven’t made my point clear yet – You don’t get to extinguish his light or anyone else’s. Period.

Shaming like this just leads to greater and deeper shame, creating this endless, horrible, destructive cycle. Kids who have special needs will get enough shaming in their lifetimes to make our hearts ache every day, if not every hour or minute. They need to know we’re sticking up for them.

They need to know that the people who love and value them simply for who they are will be ready and able to champion them no matter what. They need to know that our voices are stronger than those who either through intention or ignorance would tear them down. I hope in some way that my words will help him know this. And I hope every day that I will have the courage of strength and conviction to stand for them, no matter whose children they are.

There are lines you simply do not cross, and in this act, this teacher crossed it. As parents, we must hold that line without compromise against anyone who willfully or ignorantly breaches it. We are the first and last line of defense for our children. If not us, then who will?

What do I think should happen to Ms. Portillo? Schools have zero tolerance policies toward students, and I think teachers should have similar expectations and consequences for such egregious actions. She may just have been poorly trained and made a ridiculous error in judgment. I don’t know. And at the moment, I’m having a hard time caring about the difference between intent and poor decision-making.

Regardless, I think termination of her employment and suspension of her teaching license would be the minimum I would ever accept as a parent. If she finds some way to show by her actions that she has earned the trust needed to be a teacher again, then I believe in reconciliation, but I imagine that will be a long time coming. But my advice to her would be, don’t be surprised if many people neither forgive nor forget. You just don’t mess with our kids, and we won’t take ignorance as an excuse.

I try hard to find something to build from in every situation, no matter how awful the whole thing seems. Here’s what I found to hold on to from all this.

I’m heartened by the overwhelming support and action that has flowed forth from parents and bloggers of every kind from every corner. The world of autism has many factions, many controversies, and much disagreement, but mess with our kids and we will act as one voice. Our children are more important than our differences, and this has reminded us of that.

In the Internet age, we are serving notice. Acts such as these will find the light of day. We will make sure of it. We are watching and listening. We aren’t some tribal council; we are the entire village. We have spoken, we are speaking, and we will continue to speak until our children are treated with respect and dignity.

Given the challenges we face every day, we do not give up easily (or at all) and we have developed incredible endurance. We’ve had to. Autism is an endurance event. It requires all of who we are. We’ve learned that this is what it takes to help our children grow and thrive. And we recommit ourselves to it every day, by both necessity and by choice.

I wish my son didn’t have to work so hard at everything, but he does and does so bravely. He inspires me every day. If I can love him through his challenges by the sheer force of my will, I will. I celebrate him just for who he is. He has become my teacher. Maybe when this teacher decides to become the student for a while and learn what all this means, she will understand what all the Alexes of the world have to offer us.

Also, two kids – for whatever reason – voted against this abominable act. It’s been 30 years since I was in kindergarten, but I don’t recall going against your peers being any more popular then as it probably isn’t now. I don’t know their motivations, reasoning, or feelings about their choice, but I applaud them regardless. My hope for them is that their light of compassion, decency, and their sense of right and wrong is such that no teacher, adult, or peer can ever take that away from them.

I close with two messages.

To Melissa Barton – There’s nothing I can really say that could possibly relieve you of what you have to carry right now, but I will say this. We’ve got your back. You are not alone.

To Alex Barton – You are wonderful and special and perfect just the way you are. You are unique in all the world. Don’t let anyone ever tell you otherwise. Let your light shine. Let it shine, let it shine, let it shine!

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Chewing on J-Man

by Mary on May 29, 2008

You know those days where there are some rotten times (like when the person who was supposed to be helping me closed all my browser windows remotely, even though I had one open to the exact place she ended up going back to, and then saying, “Yeah, this isn’t what I do. You have to call someone else.”), and then there are sweet times?

This is about the sweet times.

The J-man still has this nasty cough, and it seems to get worse when he tries to go to sleep (maybe because of positioning or something), so he really hasn’t slept a lot. He was so tired today before his nap – he essentially snuggled up on Pepaw until I went downstairs for lunch, then snuggled between us for a bit before Pepaw carried him upstairs for his nap. It was lovely and quiet in the nursery, and I nodded off several times, and the J-man was just about out, but he MADE SURE to kiss me before I put him down.

Then, when he couldn’t sleep from the coughing and got upset, Tim went in and rocked him for a very long time. No sleep, but some rest snuggled against Daddy.

Every time I’ve been near the J-man today, he has wanted a hug, or a kiss, or to hold my hand, or something. I could eat him with a spoon if it wasn’t illegal in this state. He smells better than the chocolate/caramel dessert I had yesterday (which I DID in fact eat with a spoon – could possibly be illegal here considering some of NC’s stupid laws). Even when he’s refusing to follow any of our instructions, or being noodle boy, or even when he smacked me with the remote today (on accident people!… uh… person) – he’s still yummy enough to chew on.

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Ups and Downs

by Mary on May 27, 2008

The J-man is having one of those days. OK, maybe one of those weeks. He does brilliantly at some things (see also: the typing thing!), and then completely loses it with others (see also: speech therapy today. Whew!). I don’t know if he’s still just off his game from being at the grandparents for the weekend, or if he’s going through a growth spurt or some kind of developmental spurt, or what, but it’s been WILD in the old Flashlight house lately.

First off, little man isn’t sleeping a whole lot. He is spending more and more time kicking the side of the crib instead of sleeping. Second, he’s not listening to directions as well – yes, I know we’re talking about a 2-year-old, but there were still things he would respond to. His eating has been pickier than ever – although cheese toast is still a huge hit, the nuggets aren’t as awesome as they used to be. And, the shirt chewing is back. He essentially is a big ball of stress.

On the plus side though, he knows WAY more of the alphabet than we thought. When we sing it to him, he says, or tries to say, many of the letters, and is learning to recognize them on the keyboard, or in his ABC board books, as well. Go little man! He is pointing to and recognizing more pictures in the book Tim reads him every night at bathtime, and there is nothing so cool as watching your kid point out ALL the flowers on the page when asked where the flowers are – especially when we had only previously pointed out the flowers in the ground that Tigger is watering, not the ones Pooh is holding, or the ones by the fence, or the one that Eeyore is admiring.

He’s also really working on saying “I love you” which will just melt your heart. He’s working hard on climbing and going down steps, and is able to do it holding onto the rail and someone’s hand – occasionally taking “big boy steps” which I don’t think we’ve consciously tried to get him to do yet.

Hopefully, we’ll settle back down soon, since he has a hearing test next week, then (dun dun duuun!) the dentist the week after. Can’t wait.

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He can type?!?

by Tim on May 26, 2008

OK, I’ve heard a lot recently about non or barely verbal autistic children being able to type and communicate like gangbusters. Typically this is for older children, though.

When you start seeing your own speech-struggling, not-terribly-receptive-to-word-games toddler identifying letters on a computer keyboard, that’ll freak you out, in a good way of course.

J-Man LOVES computer keyboards. He doesn’t bang on them at all, just thoughtfully presses keys here and there. I occasionally hand him one from our pile of surplus keyboards, but it doesn’t interest him as much unless it’s attached to a computer he can ‘accidentally’ reboot or delete files from…

In any case, he stood in front of Mary’s laptop and started playing around with the keyboard. Here’s the I’m-not-making-this-up summary.

M: Where’s the ‘K’?
J: (after a few seconds, presses the ‘K’ several times)
M: That’s right! ‘K’!
J: Kay-kay.

M: Where’s the ‘U’?
J: (hunts thoughtfully for about 15 seconds, then presses the ‘U’ many times)
M: That’s right! ‘U’!
J: (something like) uh-ooo!

[Daddy is currently scraping his jaw off the floor.]

[Crowd thinks, surely not another?!]

M: Where’s the ‘Y’?
J: (hunts thoughtfully for a few seconds, then presses the ‘Y’ a few times)
M: That’s right! ‘Y’!
J: (tries to say something like ‘Y’)

We repeat this for ‘M’ too, and after that he says ‘muh-muh’, at which time I’m simultaneously freaked out and dumbfounded and especially proud.

Maybe we should go get him one of those toddler computer-y things that talks back when you press a letter.

Dude. I don’t know what to do with this one yet. Well, except say “Yay!”

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This Week in Achievements!

by Tim on May 24, 2008

After last week’s wild travel adventures and being so far off our schedules that we might as well have been in a different dimension, we didn’t expect a whole lot on the progress front this week. Our goal this week was just to regroup and get back into the routine.

Our sleep has been erratic (and generally too little of it) and we’ve been racing to catch up with all the undone crap around here. We’ve had to do some extra work on a few things with J-Man to get going again, but on the whole it’s been a really positive week.

Talking started off a bit rough this week; getting him to ask for ‘more’ of anything was a total ordeal. Our usual pattern of withholding something until he asks for it – even if we know what he wants – wasn’t going well, and it was obvious he was less patient and getting way more frustrated than usual.

The last couple of days, though, he seems to have gotten back into it and then some. The fill-in-the-blank speech therapy work we do with stories and songs has gone gangbusters all the sudden. It’s clear he knows a lot more about the words in those stories and songs than we thought. He continues to surprise us every day.

We can’t help but do “Old MacDonald” since he fills in “oh-oh” after “E-I-E-I”, “cow-cow” after “and on his farm he had a…”, and then “muh-muh” for the cow sounds in the right places. The first time he did all that, we all teared up. It still doesn’t get the least bit old.

He surprised us even more by filling in some of the letters and words in the ABCs song and words in Dr. Seuss’s ABC book. If he needs a more obvious hint about what comes next, I’ve found that sometimes I can just mouth the word without saying it and he knows what to say. That was a pleasant shock, too!

So, obviously, the fill-in-the-blank work has been fantastic for his speech development.

The other major achievement of the week was that he fed himself almost an entire bowl of applesauce/puree with his spoon a couple of times! Sure it was pretty messy and he dropped some of it on himself because of the, um, unique way he holds a spoon, but I felt amazed watching him do that by himself. This is such a huge achievement for him that I can hardly put it into words.

He’s also branched out some from cheese toast to eating honey and butter toast as well, which seems to have helped the nagging cough he’s had for the past few days. It’s a small step forward into softer, more sticky and squishy textures, but for him every step forward is a hard-earned one.

I was a bit uneasy when I dropped him off at preschool yesterday because he threw a big crying fit, but I stayed with him in the classroom for a few minutes and he calmed down. He went off and did his thing and did well for the rest of the three hours. His teachers said he had much better focus during both art and circle time than usual. Given how fidgety he is and how un-fun he finds art, this made for a banner day!

I read about half of Stanley Greenspan’s Floortime book while on the various flights and have been experimenting with some of his suggestions. The J-Man has responded well to just some basic, low-key engagement, working with him on whatever he’s chosen to do rather than forcing him to do something. We’ve gotten some good eye contact that way and he’s easier to engage.

I’m not a Floortime convert or anything, but I do think it will form a piece of the whole puzzle of stuff we’re devising for him. The county schools use TEACCH here, so Floortime will compliment both that and some ABA activities we’re planning on doing by providing something more relaxed and free-form for him. He does so well with structure, but it does burn him out after a while, so we need something like Floortime to let him do some self-directed, easier stuff.

For those of you who don’t know what the heck I’m talking about, I do have plans to create a vocabulary page at some point. :-)

That’s all from Chez Flashlight for today. Off to rest my strained wrist – my latest fatherhood/lugging around heavy-ass luggage injury.

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Wherein I Flaunt My Internet Nerdiness

by Mary on May 24, 2008

This is how nerdy I am: in the past 2 days, I have sent email to both Rita from Surrender, Dorothy and Melissa at Shakesville… and both have answered me. Both emails were for technical issues I was having with their sites, and they were both gracious enough to answer me directly. You should have seen my reaction when I got real-true email from those famous people!

I’m considering printing out the emails and bronzing them. Or something.

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Subscribing via FeedBurner and Other Meta Goodness

May 22, 2008

I set it up so you can subscribe to our blog through FeedBurner. My main reason for the change was to give people a bunch more subscription options and to give me a better way of tracking blog traffic. I’ve been using Google Analytics, which is good for what it does. The old feed address […]

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The Fish Oil We Use

May 21, 2008

Someone asked us what brand of fish oil we use for J-Man. It’s Nordic Naturals Children’s DHA. This isn’t so much the result of extensive brand shopping, but rather it’s what Whole Foods had in stock that satisfied some basic requirements. Upon the recommendation of one of his therapists, we decided to try fish oil […]

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