Saturday, June 28, 2008

Boys at the Movies

So it's summertime, and that means Hollywood owes us some family fare. Blockbuster, kid-friendly, crowd-pleasing popcorn movies. I took the boys, sans Joeymom, to Kung Fu Panda a couple of weeks ago, and Wall-E today. 

I guess it's worth mentioning three summers ago, when Joey was between his first and second years of preschool, one of the few summer activities the school did was to host a movie event in the school auditorium. I forget the movie now, and while it was decidedly low-tech, it was a nice test to see if Joey could sit still and pay attention to something for more than a few minutes. Well, Joey being three and autistic, he failed miserably. It was dark. The movie didn't interest him. He and his brother ran wild throughout the non-crowded auditorium. We had to bail after only a few minutes. Joey has come a long way in dark, crowded settings.

So with that in mind, we ventured to Kung Fu Panda. I was a bit concerned with its PG rating. In the ads, Dreamworks' animation looked gorgeous, and it was. But the guys watch the dino documentaries, what with T-Rexes eating their bloody prey and all, so how bad could it be?

Well, Andy lasted about 10 minutes into Kung Fu Panda before crying. Great sobbing wails of 'That's scary.' So we came home. For the record, while there was really no violence at the point where Andy lost it, it was an intense scene of non-violent conflict. 

So with reviews read, a G rating in tow, and two boys excited to see it, we trekked off to Wall-E. Well, this time, Andy did much better. It was still 'scary', but he was able to cope by sitting on me. We lasted an hour. The impulse for leaving wasn't any great crying fit, it was a combination of Andy's periodic 'I wanna go home' and a movie, apart from the endearing title character, that was more or less unlikeable. 

This ain't your father's Pixar film. Like Ratatouille before it, Wall-E is a grown-up movie that's appropriate for children. Unlike immortal classics like the two Toy Story movies- with their themes of friendship, growing up, and staying true to one's self-  and Finding Nemo with its examination of disability, parenthood, and fear, Wall-E is a less-than-subtle dig against consumerism and current environmental practices. Oh goodie. However you feel about those issues, they do not lend themselves to a fun, entertaining film. I eagerly await the 2009 blockbuster from Pixar, 'Capital Punishment, Abortion, and Child Abuse'.

Yes, the company that branded everything imaginable with Cars characters just two years ago, has taken a stand against consumerism. Indeed.

The good news is that Joey liked the movie. He sat in his seat or bounced on it the whole time. Andy lasted longer than before. But unfortunately, I was not sorry to bail on Wall-E early. 

How does everyone else do at the movies?

Thursday, June 26, 2008

Myths of autism

Having Joey in Vacation Bible School is a bit of a challenge for my nerves. Not Joey himself; Challenges for ME. You know, my own issues. We all have them. I can see how different Joey is from kids his own age. That can be hard- not because it is a problem, but because I'm a human parent who wants my kid to be happy and have friends. It is also hard because so many folks come up to me, knowing Joey is autistic, and say weird things, like, "You've done great work! He's doing so well!" All I did was drive. Joey did the work part. "Are you sure he's autistic? He seems so normal!" Yes. Yes I am. Um... thanks? "Oh, normal kids do that, too." This is in response to things like having a small tantrum over losing a turn or signs of frustration from not understanding the rules of a game, or something like that. Yes, normal kids have tantrums; excuse me while I intervene before this becomes a meltdown.

They mean well. But they have preconceptions of what autistic people can and cannot do, and Joey isn't fitting those parameters. some of these preconceptions are spread by parents, therapists, and caregivers of autistic kids- and I have even seen some of them on sites written by autistic people.

1. Autistic people cannot lie. They need to stop by my house. Joey's IEP includes taking responsibility for his own actions, instead of trying to foist his misdeeds on someone else. ("Joey, did you just take that toy from Sally?" "No. Andy took it." Andy is no where to be found, and the toy is in Joey's hand, and I watched him take it from Sally...)

2. Autistic people are "uncompetitive." Oh, haha. Joey's latest perseveration is, "I win! I win first!" and "I'm a loser! I cannot win. I lost." Joey likes being good at things, and being better at things than other people- just like other kids.

3. Autistic people cannot be spiteful. Sure they can. Joey sometimes hides toys just so Andy won't have it. He picked this behavior up from Andy.

4. Autistic people cannot be social/they don't like people. There are still doctors in the world who will not diagnose a child as autistic because they are "too social." This is a bunch of baloney. Joey loves people, loves to participate, and is highly social. He may not have the skills to be successfully social, but he gives it the old college try every time.

5. Classically autistic people do not speak. If your child speaks, s/he actually has Asperger's Syndrome. People actually will change a child's diagnosis when they start speaking to Asperger's, as if that is the sole difference between "classic" autism and Asperger's Syndrome. Joey is verbal, but is "classically" autistic, not Asperger's. He remains severely communication-challenged. He has a lot of trouble answering questions or following a conversation. "Verbal" does not mean "not communication-disabled." I think parents don't fight the change because Asperger's is seen as a sort of "autism lite" that is more manageable; there is some psychological thing of "my kid is improving! He's no longer Autistic; he's Autistic Lite!" There are more success stories out there about people with Asperger's, as opposed to people with "classic" autism. The change in diagnosis is seen as a glimmer of hope for people who do not want to be "stuck" caring for their child for the rest of their lives.

As others of these myths rear their ugly heads en masse, I'll let you know. In the meantime, I'm still fighting the "autism is caused by bad parenting" myth and the "I shouldn't have to deal with your disabled kid in public" attitude. Don't like my kid learning to relate to public places? Don't like it that he needs to chew some gum in order to calm himself and navigate the store? Well, guess what: I hate the smell of coffee. I don't go about telling people with coffee breath to get out of my space, even though I find it disruptive and disgusting. Get a clue.

Vacation Bible School: Day Four

This was an up-and-down day. I'm not feeling so good, and I think the boys are a bit titchy as well. Joey was very sensitive, and did a lot of "I'm not worthy." The re-emergence of "I'm not worthy" has been an interesting phenomenon. When Joey is very tired, and is just being peevish, instead of having a total meltdown, he now reverts to I'm Not Worthy. It actually has made life a little better- less total meltdowns, because I have this extra clue that one is impending and can intervene. Also, the I'm Not Worthy is not as dramatic as it used to be- the howling that comes with the head on the floor is less intense, and he doesn't smack his forehead on the floor, he just touches it and stays there. It only counts as a Level One if the howling is loud. It is more like a pre-tantrum.

The other thing is Joey has a lot more words to use to explain what the trigger is. He may not be able to tell us all the little irritations feeding into the problem- who can?- but he can give me clues to the current trigger. "I want another turn." "He's in my space." "I need help!" this is such a vast improvement from where we began! I am grateful to be able to intervene, and give Joey those much-needed calming hugs. It also reminded me why it was such a good idea for me to be in the tribe with him. Other mom wouldn't understand the need for fast intervention and deep pressure. More likely, he would have been put into time out or punished as being spoiled. Instead, I could step in, calm him, assure him that he would have another turn soon and talk about how other children need to play, have their turn, and have fun, too; that if another child is in his space or too close, it is OK for him to move; that he was doing great with his basket, and I'd be happy to tie on the next yarn color for him.

But I think we're all just off today. Something in the air I guess. Or just the long week. Or maybe we ate something yesterday not so good? Or the heat? I think a quiet afternoon is in order.

Alex Barton: The District Investigation

The District investigation into the incident with Alex Barton now includes a statement from Alex Barton.

Why am I keeping up on this case? Isn't it cut-and-dry? What's the big deal? Aren't there other, more important, stories about people with autism to follow?

Although I said last time that I had stopped reading the editorial letters in the TCPalm because they made my blood pressure go up, that I couldn't stand the bald-faced ignorance and unadulterated hatred being revealed through the letters being written about the case, that they struck fear into my heart for Joey, there is also one thing more.

There but for the Grace of God go we.

Several of the letters and comments say the case has raised awareness, but then go on to say that Alex Barton was misbehaving, or that the situation was somehow the fault of Alex or his mother. That tells me that awareness hasn't been raised at all. Only shackles.

Several of the letters and comments say that Wendy Portillo and the school are not at fault because Alex should have been in a special class. This ignores the fact that children like Alex have a legal right to be in the least restrictive environment, that Wendy Portillo was left for months without appropriate training or support, and that Wendy Portillo could have gained valuable strategies for dealing with and understanding Alex with a simple Google search. A lot of information has become easily available via the internet in the last few years- even in just the little while I've been blogging. I'm adding valuable websites to my list for parents all the time (have a favorite info site? do send it along!). No effort was put forth to support Alex Barton in any way, by any of the school personnel who should have been supporting and protecting him.

The prevalence of these views is horrifying. We're not getting the word out. We're not getting that awareness raised. We have got to get out there and get in the faces of these people. Whatever you believe about autism, about its causes, about the strategies for dealing with autism, raising a child with autism, providing services for autistic people- folks, this case is just plain ugly. Get out there and tell people: this is not about bad parenting, and it is not about spoiled children, or children lacking obedience or respect.

Punishing a child does not take the autism away.

Wednesday, June 25, 2008

Wordless Wednesday: Up Close and Personal


















Vacation Bible School: Day Three

today was smoother than yesterday. I kept Joey's hands busy with making a clay lantern, then a basket. He is really into working on the yarn basket, which I found surprising. usually complicated fine motor tasks are very frustrating for him. We brought it home with some extra yarn, though I may have him work on it on Friday, when we might run out of crafts. Andy's class has given up on the Synagogue School part, the person running it just wasn't willing to alter her presentations to accommodate preschoolers. She let me know she's taking them outside instead, but since tomorrow will be so hot, she's planning on having them coloring and singing songs in small groups in the tribe room tomorrow.

So a deep breath. We're over halfway through.

Tuesday, June 24, 2008

A Day Late and A Dollar Short: A Talk With Another Mom

I just saw that folks were reposting favorites to welcome new traffic on the Hub. I noticed because my daily traffic just doubled today. Wowzers. Welcome, new folks checking out the Hub! And old friends checking out the latest! In fact, hello and namaste to everybody! I'm glad you stopped in for minute. And in case you are interested, I'm reposting a post I read a lot. If you think its weird for me to read my own blog, well... then I'm weird. But I knew that already.

I am going to add in more links to the original text, because I think it is fun to add in links so people can check out what you are making references to. If you'd prefer, you can check out the original post and comments. I also now have a sidebar list of posts I like from my own blog.

I have chosen for my repost: A long, long talk with another mom

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My best friend is a lady who lives down the street with three hydrocephalic boys. I’ve mentioned her before. And whenever I am feeling particularly beat up, my butt usually ends up on her couch. Needless to say, we had a long talk this morning- about yesterday.

Being a “special needs parent” is not like being another kind of parent. Apparently there are people here who don’t know that, or don’t want it to be a reality. But it is. Parents who do not have special needs kids really and truly have no idea what it is like to have a special needs kid, or what it is like to be a special needs parent. Most parents are living it up in Italy, and we’re over here in Holland- or, probably more properly, India.

I love India. No, the real India, I mean. I spent three months there, and a separate three-week trip before that. I wish I had been there longer. I’ve never been to the real Holland, but I’ve been to Belgium and Germany, both of which are spotlessly clean, at least in the tourist districts. They are beautiful, wonderful places… but clean. Very, very clean. And in many ways, very like places in the US.

India is a whole new world. There is dirt, grime, heat, poverty, cows, beggars… the whole crunch of human life. Clean water comes in bottles. The hotel room uses a geyser for hot water, and it only will heat a couple gallons at a time, and then you use a bucket and cup to actually take the shower. Air conditioning is a rarity- as is refrigeration. In the villages, you’re lucky to have running water, and you have electricity for only a few hours a day (and not consecutive hours). Paved roads are a city “thing,” motor-rickshaw is the transport of choice, and cows have the right-of-way. Living in India when you expect the standards of US living is a really big challenge.


If you spend your entire trip in India focusing on these challenges and wishing you were in an international hotel, you really miss the wonders that are India. You would miss sitting on the far side of Sanchi Stupa 2, in the breeze, with the scent of ashoka blossoms and the plateau stretched out below you. You would never see a shrine in the middle of road, draped in orange and yellow garlands and filled with carnations, while incense and the ringing of bells fill the air. No one would be able to run up to you from the local temple and offer you prasad, or ask you to hold their baby while they take a photo. You would never see the lights of navaratri or the colors of a fruit market, stacked high in the morning. You’ll never share lunch with a troop of monkeys. If you don’t go into that cave that smells of bat dung, you will never see the paintings of Ajanta.

At the same time, what’s so wrong about sometimes wishing you could stay at an international hotel and have a nice, gourmet dinner? Or just be homesick, wishing we were in a comfy living room with a TV, wearing our favorite pajamas? Our problem is whenever someone here mentions being homesick, we’re told that India is a beautiful place, it’s where we are, and we shouldn’t “be that way.“ The Dutch and Indians often have no idea why Italy is such a big deal, and get insulted when someone wishes they had seen the Sistine Ceiling. Did these people never wish they had won the lottery? Never wonder what life would be like if they lived in a different house? Have they never seen the Monty Python skit about the accountant who wants to tame lions? But we, as parents, are not permitted to be homesick. We aren’t allowed to wonder about dreams we once had, or mourn their loss. After all, we’re moms and dads. We’re not supposed to be human…

Meanwhile, my long talk with my friend…

We “forget” that our kids are “disabled.” This is just who they are. When you live in India, India is normal, and you spend weeks on end not even thinking about Italy. Our kids wouldn’t be who they are if they were not disabled. On the other hand, they wouldn’t need the help and support for the rest of their lives, either. Joey could play with the other kids instead of spending whole days in therapy-- basically, in school. For those of you who have forgotten, most kids like vacation a LOT better than school. But then, most kids don’t scream bloody murder when they are served their spaghetti in a blue bowl instead of a red one, or when they have to go to the park instead of the pool. They can swallow their food without being taught to do so.

My friend is sometimes sad when she sees kids walking down the street, hand in hand with their mom. Her kids will never walk down the street. She will probably never know the feeling of having her children tell her “I love you.” She doesn’t dwell on it. Her children are not a burden to her, she takes pride in every little accomplishment they achieve, she loves them and supports them. We trade phone calls: “Max sat up by himself today!” “Great! Joey answered a question today!” “HOORAY!” They are our children. But there are those moments when we are reminded that life was going to be so different. We were going to have jobs, spend afternoons in the park, go for spontaneous trips to the zoo or the grocery store. It would be nice to be able to join the other parents down at the local eatery for a beer now and again. Just now and again. According to many folks who emailed me, having such thoughts and moments make us anything from mean, horrible parents to outright evil people who should give up our kids to the State for foster care. Our lives are not as scrubbed and tidy as Holland. Should I wish it were?

The real world really has dirt, and poverty, and heat, and irritation, and inconvenience. It is beautiful, anyway.

Vacation Bible School: Day Two

I arrived this morning prepared. Very prepared. Bigger cups for water. Different costume, so I could readily change and be in Tribe colors. I gave both boys a good squishing before we went in to the chaos of the Sanctuary. Bring it on.

Andy was skittish, but not a mess, and seemed happy to be back with his new friends. Joey was OK, and pleased to be allowed to carry the tribe banner. The games people were better prepared for a younger crowd. The school section still went over the heads of our group. Then we hit the Marketplace.

Yesterday, Joey loved the fishing stand, with the big wheel to spin and pretend to be on the boat. Today, the adult who had been there yesterday was gone, and it was left to a couple of 8th graders, who denied Joey access to the wheel.

The Marketplace is a bit of chaos, and it is in a gymnasium, so the echoes add to the chaotic feel. The tribes break into smaller groups, and some of the adults just let their kids run, while others (like me) try to keep grouped and at least keep tabs with their charges. I had one kid enamoured with the carpentry tent. Joey is enamoured with the fishing tent. So between crafts or while we are waiting for one kid to finish, I let the guys "take a break" by being where they are comfy and interested. Having the fishing area off limits when it wasn't yesterday... well, I think we can all see where this is going.

I made an error. After we made dreidels at the carpentry tent, Joey learned of the fishing area closure, and started to be upset. In an attempt to distract him, I took the boys to the herbalist and perfumer cart, away from the fishing area.

Did you catch the mistake?

Yep. Sensory overload. I added scent to the already near-overload of sound and sight. the other two boys were interested, but Joey was overwhelmed, and already upset by being denied the space he was using to calm himself (spinning that big steering wheel is very calming- the work of the spin plus the visual stim of the spinning object). Meltdown, level 1 commenced. It quickly progressed to level two.

That was the moment the "Daily Drama" began. Today we had a Roman soldier abusing a couple of disciples. It actually wasn't something I thought altogether well-chosen, but whatever, Joey completely missed it anyway. We were busy being squished and rubbed and trying to get him out of meltdown, and I managed to stem the tide while everyone's attention was pulled elsewhere. Once he was back to grips, he was good to go.

We also were in luck- word got around that we needed the fishing area open, and the kids who were stationed there got word, and let him in. So we got that calming in, too. Then we moved on to jewelry (except my carpentry kid- he was happy learning about carpentry tools, and the woodworker was happily teaching him, so I left him alone. He can always go back and make necklaces if he's interested.) The bead stringing forced focus, and he did one side while I did the other, and peace resumed.

The rest of the day was pretty smooth. The other adults discovered what I mean by "Joey wanders", but there was no danger of him escaping from the room (there is an adult soldier posted to make sure kids stay in there and don't wander off), so that was all good, and perhaps a little educational.

A Farewell to Tasha Tudor

We had another loss this week: Tasha Tudor is gone. She was 92 years old.

I am a great fan of A Secret Garden by Francis Hodgson Burnett. I remember as a child looking at Tudor's illustrations through my copy, the thin face of Mary Lennox, the stout frame of Martha, the large eyes of Colin, the fresh spirit of Dickon. Tudor captured the very idea of a growing garden. She was a perfect illustrator for A Secret Garden because, like any character actor, that is how she was.

The cycles of things lend one to a nostalgia that meets us when we think of how things change. The world of Tasha Tudor was very different from my own. She lived in the world of my own grandparents. I have a photo of my grandfather with his horse and wagon taking vegetables to sell at the Eastern Market in Washington, DC. The farm his father worked to help the patients at St. Elizabeth's be self-sufficient is now a national park. I took my kids there recently. What was once a peaceful farm in farm country is now an oasis of the past in a sea of concrete, asphalt, steel, and grime. I remember being there as a child, vaguely; they used to give you hayrides and sorghum, and it was sunny there, I remember that. When we saw it, it looked so small. A corner of sanity in a world gone hard and fast. It seems all the world works like our own lives- the past seems so slow, quiet, and easy in a world growing increasingly hectic and hasty. Summers used to seem like lifetimes of warm air, wading in the river, listening to the whippoorwills, and watching the storms roll in. Now they flash by, and I'm already wondering how we'll be carving the pumpkins and what Christmas decorations to pull out.

I'm not a particular fan of summer. I like autumn better. I like the cooler days and the crisp morning chill and the scent of ginger, cinnamon, and warmed pumpkin on the air. Although there is something wonderful about the scent of my great-grandmother's rose wafting over the whole garden in early summer, when the green is full out yet still fresh and the air not too muggy. And I do miss the lush shade by the river, with moss beneath my feet or the cool, slimy river mosses as you stepped in to hunt for mussels in the shallows. The feel of the water swirling under my fingertips as I lay on the bank of the Emerald Walk. The dappled sunshine and damp sandy mud, the smell of the earth and the clay and the fallen-leaf carpet. I used to run down the path to the Starting Point, brushing aside the saplings, swinging down through the tree-trunks, down the rock face to the tree overhanging the river and the jut of the bank low enough to step in and start wading. I hardly touched the ground all the way down, feeling little but the speed of motion and the final splash of the water greeting my eager feet.

The tree is gone, and that lick of bank is washed away. The path is overgrown with no wild teenagers to fly down it. The whippoorwills are gone. The world changes, and hardly ever flows the way we think it will; sometimes we get caught in the eddies against the banks or swirled by the branches that dip into the stream. We have a great luxury in this country, of being able to stop and slow down and breathe now and again, to wax nostalgic and ponder the might-have-beens. Some of us hold the luxury of preserving things the world has left behind, or would leave behind if we failed to preserve them. A stroll along the Emerald Walk would not be the same as it was when I was young, and one day it will be lost under a reservoir the county has long planned to support a growing population of folks who would rather have streetlights than stars, who choose grass and sidewalks over blackberry brambles. I miss my mom's wild blackberry jam.

Monday, June 23, 2008

Vacation Bible School: Day One

So I signed Joey and andy up for Vacation Bible School. This year our church is doing a sort of tableaux vivantish "Jerusalem Marketplace" thing. We all get into costumes and run around learning about what life was like during Holy Week. Joey has trouble relating to and learning social studies, so I thought it might be good for him to have all the multi-sensory stimulation to relate to.

We ran into several issues. One, I had to volunteer as a class adult to be sure Joey's sensory issues were considered, such as breaks and gum and whatever he might need. I was placed in his class so I could take him solo if need be. That's fine. But it turns out that the other adult helper is also there because of her special needs kid. We can't very well both run off solo with our kids should needs arise and leave the class leader with ten kids all by herself! We are also the only room that didn't get some of the high-school-age church members as extra aides. Figures.

Two, the change in schedule, though I had been warning Joey and trying to prep him for it all week, almost lead to complete meltdown. The idea of going to church on Monday was just too much for Joey to handle. He repeated "Church on Monday... No church on Monday! That's silly! Church on Sunday!" for a good deal of the morning. This is actually unusual for Joey, who usually takes schedule shifts in stride with a little warning.

Three, we all gather first in the sanctuary, and the chaos is deafening. Andy just about had a meltdown when we hit the door. Fortunately, Joey's speech therapist is a member of our church and was helping in Andy's tribe/class today, so she snatched him up and helped him settle and regulate.

Four, it's a church, not a school. The class "teacher" came completely unprepared, and hadn't even glanced over the day's lesson and scripting, so she knew less than I did about what was supposed to be going on. The whole program is kind of geared to an older kid crowd, say 3rd-5th grade, and no one seems to be prepared to gear anything to kindergardeners or preschoolers, including the crafts, games, or the explanations given for what was going on. No one seems to be trained to work with children at all. It seems to be a whole building full of adults trying to wing it.

Five, because I'm volunteering, I don't have three precious hours to myself each day this week.

The good news is the marketplace itself is gorgeous and I have seized control of the kids assigned to me, and know exactly what my little subgroup will be doing each day. I made some books about each of the major crafts they will be doing (pottery, woodworking, weaving, and basketry) so they can relate to what they will be doing before they jump in to do it. Because everyone else is winging it, I have the flexibility to not wing it. Also, I get to spend all morning with my Joey, and I get to explain things as we go along, and talk about it with him knowing what he did all morning.

Also, I get to spend all morning with Joey.

Joey, all to myself.

This is going to be a great week.

Saturday, June 21, 2008

What do your words say?

Joey had an absolutely Cracker-Jack team of teachers this year, and the methods they used to gently, supportively, and lovingly get him to think about language and use it appropriately were gems I wish I could use on my college-age students without them going ballistic on me.

One of my favorites was Mrs. S telling Joey, "Here is what your words said: [Joey's mangled attempt to spontaneously create a sentence instead of quoting someone else]. Does that make sense to you?" She would sometimes ask other kids in the class if those words made sense, too- not in a humiliating way, but in a way where everyone was helping everybody else untangle what was said, so that everyone, including Joey, could come up with the words that were needed. He could hear the words and realize they did not make sense, and clarify wha he wanted to say with some help from his friends.

For example (and I use it because I already have it up on You-Tube), when i went in to visit Joey, i took a lot of pictures of him. Joey has always loved cameras and having his picture taken, even as an itty-bitty. He was very happy and excited. So when it came time for the News, Joey's news was naturally going to be about me and the camera. He had nowhere to pull words for that. There was no TV show he could quote, no-one else was having their picture taken, he was completely on his own. The words that came out were, "I am happy I get to play picture-taking."


We got it decoded to being happy I came to school, and happy to have his picture taken (watch the video, its really cute). Joey loves to imitate this phrase, especially if he doesn't understand what someone (especially Andy) said. He gets that little cock to his head and asks, "Does that make sense?" with a giggle.

I would love to go all Mrs. S on some of my students:

"When a leader stumbles his followers fall right on top of him."
“B ecause the art is the dunp thing in paintings, the big painters like Leonardo the winchy and other painter said a lot to the people by the paintings.”
"There is no denying there was a lot of Hellenistic influence in Greece."
"Power is communicated though art in many was. religiously you have Jesus who wore a purple rode, gold rope and was a very powerful person. That was a sign of power."

And those are from people who are English-speakers. I have plenty more that are silly only if you know something about art history. I'd just like to sit them down, and see if I can't get whatever they thought they were saying out of their heads and into their mouths (or pens). I need to know if they really understand the material, and we just have a communication problem, or if they really are this confused and lost!

Friday, June 20, 2008

A Long Day of Adventure

We had a really good day today. The boys were golden. We started at Colonial Beach, where they had a good swim. JOey was pretending to be Magic School Bus characters. Andy was a crocodile. Hilarity ensued.

I spent the morning in a comfy folding beach chair collecting pretty rocks and holding Andy's collection of pretty rocks. If I had brought a glass of wine with me, it would have been perfect.

Unfortunately, another family showed up and the mom was screaming profanities at her kids (I have no idea why- they looked like they were behaving just fine to me). We decided it was time to move on (well, I decided, and the boys did not protest). We changed into clothes and headed out into the sunrise to find lunch.

We stopped at the Happy Clam, which I had several recommendations for, but now I have no idea why. It was expensive, the food was mediocre at best, and the famed desserts were not available (in high season!) No need to go back there. But the boys were good, and they did get fed, so we were off and running again.

We drove over to the Westmoreland State Park, which is lovely. Lots of camping, a park with great equipment, a pool, paddleboats, fishing... and Fossil Beach, where people find shark teeth. We decided on Fossil Beach. The hike was a challenge, but we got there and the boys just loved it. We were by ourselves, the water was warm, and there was not a tooth to be found; but the swimming and quiet was lovely. Joey was being the Magic School Bus. Andy was being a shark. Hilarity ensued.

We collected more pretty rocks, the boys did a lot of swimming, and then we trudged back to the car (a good trick with my asthma).

We beelined to the camp store for ice cream and a couple of for-sale shark teeth (next time, they will know what we are looking for!), then headed for home. The boys spent the ride home pretending to be bitten by their teeth, or pretending the teeth were their own (look mom, my tooth fell out! My tooth is growing in! Look at my tooth! oops, it fell out! ...)

If all trips went this well, we'd have more of them. The cost of gas be damned.

Thursday, June 19, 2008

Changes to Virginia SPED Regulations

The Commonwealth of Virginia is proposing changes to the Virginia special education regulations- dangerous changes that threaten to exclude parents from important parts of the process. With the new changes, children above the age 5 will not be able to be categorized as "developmentally delayed" and services can be terminated without parent consent. These changes being made under the excuse of complying with with IDEA... but in fact, they go directly against the purpose of including parents and serving children with disabilities based on individual need instead of diagnosis!

Some months ago, parent organizations in Northern Virginia got together and put together comments to protest the changes. They invited parents to use their comments as a framework- or even just change "we" to "I"- and send them in to voice our protest. The public comment period ends June 30.

Please check out my links above, and then let the Virginia Department of Education know how you feel about these changes to Virginia law:
Email: ReviseSpedRegs@doe.virginia.gov
Address: Special Education Regulations Revision Process
Office of Dispute Resolution and Administrative Services
Virginia Department of Education
P.O. Box 2120
Richmond, Virginia 23218-2120
Fax: (804) 786-8520

Here is what I sent in, based on the Fairfax comments with my own commentary added:

As a parent of a disabled child, I am extremely concerned and dismayed by many of the proposed changes to the Commonwealth of Virginia’s special education regulations. These regulations and policies are intended to ensure my child’s rights are respected and protected. As his parent, legally responsible for protecting those rights and acting in his best interests, I am concerned that so many of the proposed changes seem to threaten my ability and right to protect my child and ensure his rights as a human being are respected and honored.

The purpose of the IDEA is to ensure children with disabilities are treated as human beings, just as their non-disabled peers are. In the IDEA, children are with disabilities are guaranteed a free and appropriate education that meets their unique needs and prepares them for further education, employment, and independent living.

Thus far, Virginia has been at the forefront of protecting those rights and promoting the necessary parent-school partnership for protecting those rights. This essential partnership ensures that child such as my own child have access to appropriate services and support. Without this relationship, schools and parents lose important information and cooperation for understanding the needs of any child and appropriately serving and supporting them and educating them. The proposed changes threaten this relationship by threatening Virginia’s historic guarantee of parental rights in special education. The Virginia Board of Education must not allow this roll back of civil rights in Virginia for children with disabilities and parents, such as me, who advocate for them.

It is my understanding that the IDEA requires parent consent as a matter of ensuring parent involvement, and thus recognizes the essential role of parent involvement, advocacy, and support in ensuring the rights of children with disabilities. The spelled-out right of consent to changes in an IEP and termination of services are currently Virginia-specific. They were added to clarify the intended partnership between parents and schools. It makes no sense to exclude part of an IEP team- especially the sole member of the team whose natural role is direct representation of the child- from important decisions such as changes to that agreed IEP.

The current proposal deletes important Virginia-specific parental rights and protections under the argument that it is respecting Part B if the IDEA 2004 to “minimize the number of rules, regulations and policies to which local educational agencies and schools are subject.” This is not a specific mandate of the IDEA, but a general theme of federal legislation. The changes proposed actually move to defeat the mandate of the IDEA: to ensure children with disabilities a free and appropriate education.

Regulations promulgated by the federal government are considered a bare minimum standard for states to follow. States can, and regularly do, exceed federal regulations because the respond to the needs of their particular citizens, which is their right. Minimizing rules, regulations, and policies must not mean elimination of long-standing Virginia-specific rights currently guaranteed to the Commonwealth’s citizens.

Below I address specific concerns with the proposed Regulations Governing Special Education Programs for Children with Disabilities in Virginia. These specific concerns address area which have historically guaranteed the rights of children with disabilities and their parents, and are essential in providing all children with disabilities the free and appropriate education that is their right.

1. Parent Consent Provisions

Parental Consent to the Termination of Services: [8 VAC 20-81-90, provision of existing regulation, not included]

I oppose the elimination of the current requirement that a parent consent to the termination of special education eligibility and related services. I thoroughly contest the claim that Virginia’s guarantee of the parental right of consent to the termination of services is particularly burdensome or costly to schools; removing this right on consent to termination instead places schools in a position of conflict of interest, where the child’s rights conflict with a school’s budget, and goes directly against the mandate of the IDEA.

Virginia has historically recognized the essential parental right to participate in any decision on the continued services of their child because this right of consent:

1. Ensures that the best interests of the child are served,
2. Guarantees that the parent is treated as a full and equal member of the IEP team as required by IDEA,
3. Protects the integrity of the IEP team process outlined in IDEA,
4. Prevents schools from making eligibility and service termination decisions by fiat and not by the consensus of the IEP team as intended by IDEA, and
5. Acts as a counterbalance to the pressure on school personnel to eliminate children from their special education services due to limited school district resources.

Without the right of consent to the partial or full termination of services, parents would be unable to prevent local education agencies (LEAs) from ending services when it is not in the best interest of the child. Practically speaking, the fear of termination may also force parents to accept less adequate IEPs and services, which goes directly against the purpose and intent of the IDEA. In addition, disabilities are by nature lifelong conditions; services should not be removed simply because the child has improved (no matter how slightly).

Parental Consent to Services for Transfer Students: [8 VAC 20-81-120, provision of existing regulation, not included]

I oppose the elimination of the current requirement for parental consent prior to providing special education services to transfer students. The proposed regulations would require only a “consultation” with the parent. Such a proposal could permit an LEA to implement an IEP that does not offer comparable services to the student’s previous school district. Parents would have no ability to
require an LEA to come to consensus on the delivery of services upon transfer, as is otherwise required in the development and amendment of existing IEPs.


2. Child Study Committees [8 VAC 20-81-50, provision of existing regulation, not included]

I opposs the elimination of Child Study Committees as currently required in the existing regulations. VDOE’s proposal to leave the referral procedures up to LEAs removes the protection of timelines and the guarantee that parents will participate in the referral process. The proposal also eliminates the requirement that classroom interventions not delay the evaluation. This endangers the right of a child to receive appropriate service and support in a timely manner.

Existing Child Study Committee requirements outlining the procedures LEAs must use to refer students for special education ensure consistency in the application process across all Virginia jurisdictions and are vital to parents’ understanding of and participation in the referral process. Consistent referral procedures also ensure that LEAs do not set additional timelines that unduly extend the time between when a child is referred for services and a parent consents to an evaluation.

3. Functional Behavioral Assessments (FBAs) [8 VAC 20-81-10, pg. 27-28]

I oppose permitting the process of developing a Functional Behavioral Assessment (FBA) to be merely a review of existing data that does not require input of the parent. The regulations should
clearly state that an FBA is “an evaluation that consists of a systematic collection and analysis of direct and indirect data, and may include a review of existing data.” It is the frequent experience of parents that schools conduct FBAs in name only, failing to explore the actual function of a child’s behavior and hastily compiling previous observations into a paper trail to justify disciplinary action. Failure to
effectively investigate behavior which impedes learning defeats the purpose of the FBA to change such behavior and allow the student to participate as much as possible in a least restrictive environment. To
determine an appropriate Behavioral Implementation Plan (BIP), a formal FBA must be conducted, and for an assessment to be effective, the parents must participate as a matter of parental consent. (For additional discussion of FBAs, see #10.)

Parents often have information vital for implementing an effective and appropriate FBA; this information may not be immediately apparent by simple observation or review of existing data. Many disabilities that effect behavior are not immediately apparent. Misinterpretation of behavior can result in ineffective and inappropriate FBAs, and thus eliminate a child’s access to a free and appropriate education.

4. Transition [8 VAC 20-81-110, pg. 155]

I support the continued allowance in the proposed regulation that directs transition services be put into effect when the child turns 14, two years younger than the federal guideline. Parents and children need to plan for postsecondary goals well before the age of 16 in order to devise a correct curriculum that aims to improve long-term outcomes and to accumulate necessary information for decision making on further education, employment and independent living.

5. Timelines [8 VAC 20-81-60, pg. 97]

I oppose the proposed 65 business day timeline for an eligibility decision rather than adhering to the federal guideline of 60 days from the date of parental consent for evaluation. This proposal could cause a child with a disability to wait an additional 4 weeks longer than allowed by the federal guideline to be found eligible. Intended by federal law to prevent a child who may need services from waiting unnecessarily to receive them, the 60 day limit provides ample time for an evaluation in most cases.

In those instances where additional time may be necessary to produce the required data, the I recommend parent consent should be sought to extend the limit by a maximum of 10 additional
business days. In addition, this timeline should apply to both initial evaluations and reevaluations. I further recommend that a clear time limit be established from date of referral to the date of parent consent for an evaluation so that an LEA does not attempt to unduly extend the timeframe.

6. Developmental Delay [8 VAC 20-81-80, pg. 121]

I oppose limiting the developmental delay category to the ages of 3 to 5 and recommend the IDEA 2004 definition of developmental delay from the ages of 3 to 9. The developmental delay label is especially important for young children who exhibit deficits and require early intervention, but who may not be easily categorized. These children benefit from maintaining the developmental delay label and delaying a decision on the determination of their essential disability. Rushing to label a child’s disability may have serious long term repercussions on that child’s education and emotional development. Labeling children for convenience of policy or law is extremely dangerous and senseless.

7. Definition of Autism [8 VAC 20-81-10, pgs. 12-13]
I recommend that the proposed Virginia regulation defining autism reflect that of federal regulation, which states, "A child who manifests the characteristics of autism after age three could be identified as having autism if the criteria in this definition are satisfied." [Italics added.] Virginia regulations have substituted the word "diagnosed" for "identified" and is an improper term to use for educational purposes. School personnel are not qualified to make medical diagnoses.

8. Eligibility Criteria [8 VAC 20-81-80, pg. 119-120]

I strongly oppose including any eligibility criteria for disability categories in the regulations that exceed those specifically defined in the federal regulations. Such overreaching provisions may work to the disadvantage of children who would otherwise qualify for services as a child with a disability. For example, by defining the criteria for eligibility under autism, the proposed regulations may exclude children with an autism spectrum disorder who do not fit the narrow diagnostic criteria contained in the proposed regulations. Federal law includes autism as a covered disability under IDEA; it does not
endeavor to define the various educational criteria for the autism disability as a spectrum disorder.

Furthermore, if VDOE sets specific criteria for autism, which it has not done previously, it will be taking away flexibility from LEAs in making individual eligibility determinations.

Autistic spectrum disorders are particularly difficult to categorize because of the wide diversity of skills and disabilities presented by people with autistic spectrum disorders. Removing the flexibility from LEAs in making individual eligibility determination will threaten the rights of children who, though disabled, do not fit into neatly defined categories and diagnoses.

9. Definitional Terms for Disabilities [8 VAC 20-81-10, pgs. 36, 24-25]

I recommend use of the term “emotional disability” rather than “emotional disturbance.” The term “emotional disability” conveys less negative stigma on the child than “emotional disturbance,” while summarizing the nature of the eligibility that it is intended to denote.

Similarly, I recommend the regulations use the term “intellectual disability” in place of “mental retardation.” The term is outdated and offensive to many as it use in general language has become too extremely pejorative to be useful in designating or summarizing any disability of any kind. Use of the term “mental retardation” tends to lower expectations of educators on children who meet the criteria for the disability.

10. Discipline Procedures [8 VAC 20-81-160, pg. 183-195]

I opposs elimination of the current requirement for the IEP team to convene to conduct an FBA and implement or modify a behavioral plan for any child with a disability under a long-term removal. Students with disabilities whose behavior warrants such removals need greater intervention from their IEP teams, not less. IEP teams must act proactively to determine the causes of behavior and plan ways to prevent future episodes that prevent the student from being successful.

In addition, I oppose elimination of the current provision that states students who are short- term removed should be provided services that enable the child to appropriately progress, not just participate in the general education curriculum. Services provided for such students are already grossly inadequate, and the student’s disciplinary problems are greatly compounded by the failure to meet the child’s educational needs. The proposed regulatory change would eliminate all requirements on local school divisions to attempt to remedy this shortcoming.

11. IEP Progress Reports [8 VAC 20-81-110, pg. 154, provision of existing regulation, not included]

I oppose the proposed elimination of the current requirement that IEP progress reports be provided for students with disabilities at least as often as periodic report cards are provided to non- disabled students. There is no justification for the change in providing progress reports to students with disabilities less frequently than they are provided to students without disabilities. In fact, recording and sharing data about students with disabilities is vital in documenting the student’s measurable progress.

12. Short Term Objectives [8 VAC 20-81-110, pg. 151]
I recommend the regulations clarify that IEP teams must consider including short-term objectives or “benchmarks” for all students. Unless consideration of these objectives is included on the IEP meeting agenda checklist, these useful tools will go unused, much to the loss of students with disabilities for whom benchmarks are necessary to determine if their educational program is actually working. As every good teacher knows, reaching IEP goals is unlikely without short-term objectives.

13. Prior Written Notice [8 VAC 20-81-170, pgs. 201-202, provision of existing regulation, not
included]

I strongly oppose the proposed limitations in relation to current regulation on when schools need to provide Prior Written Notice. Prior Written Notice is one of the few ways that parents can get their questions answered by reluctant schools before entering the procedures leading to due process and must not be chipped away from the existing rights of parents in Virginia. Prior Written Notice not only protects parents, it also protects schools.

14. Due Process Hearing System [8 VAC 20-81-210, pg. 234-264]

I strongly oppose removing appointment of due process hearing officers from a list maintained by the Supreme Court of Virginia and shifting responsibility for the entire hearing system exclusively to VDOE. The proposed change presents a possible conflict of interest and would improperly create a non-independent judicial system which could not guarantee the impartiality of hearing officers that is required by IDEA.

Furthermore, I oppose the elimination of the current requirement to develop and submit an implementation plan following the rendering of a due process decision or the withdrawal of a hearing request. The proposal that VDOE be provided by the LEA, upon request, with documentation that the area(s) have been corrected is only an after-the-fact requirement upon school divisions. Parents would no longer have the assurance of written guidance or timelines so that they know when to expect corrections to occur and ensure their child receives FAPE. Implementation plans ensure that changes are made in an effective and timely manner.

15. Special Education Advisory Committee Guidelines [8 VAC 20-81-230, pg. 273-274]

LEA participation on local advisory committees:
I oppose the change in the proposed regulations that would allow LEA personnel to act as voting members on local advisory committees. A conflict of interest would prevent LEA employees
from acting in a truly independent capacity. In addition, the proposal thwarts the purpose of the advisory committee, which is to offer honest critiques of the LEA’s special education policies and programs. It is hard to see how a member of the advisory committee who also works for the LEA could operate effectively if the member had to consider his or her employer when weighing in on committee deliberations, decisions, and recommendations.

Gender and ethnic restrictions on membership of local advisory committees:
I opposs the proposed requirement that local advisory committees reflect the gender and ethnic makeup of the local school division. This proposed requirement is highly discriminatory against women in their roles as advocates for their children. Women also make up the majority of professionals in education and volunteers on local PTAs. Such a gender requirement is not imposed upon LEAs in hiring administrators, teachers and other professionals, nor is this gender requirement typically made of other school board advisory committees.

I further oppose the proposed requirement that local advisory committees reflect the ethnic makeup of the local school division. This requirement is so vague as to be unusable. For example, in many areas of Northern Virginia, the ethnic diversity is so broad that it is not uncommon to see more than 50 different cultures represented in a single school. Even if the appropriate volunteers among parents of children with disabilities could be found, a local advisory committee that contained a representation of every ethnic group in the City of Fredericksburg would create an entity whose size would completely paralyze and render it useless. Additionally, parents and guardians do not necessarily share ethnicity with their children or the children for whom they are advocating (such as foster children), so even if all parents volunteered, the ethnic makeup of the school division may not be represented, depending on how it is to be determined.

Wednesday, June 18, 2008

Wordless Wednesday: Our Day at the Zoo





Tuesday, June 17, 2008

Alex Barton Update 4

A lawsuit would likely be successful- but I hope the school district has the good sense to start training its teachers and staff now, rather than waiting for this to get to the courtroom. I hope they put supports in place for teachers who have special needs students in their classrooms- appropriate supports, not a police officer. I hope they start putting supports in place for students who are in the process of being evaluated and served by special education, so that they don't get lost in the gap.

I have stopped reading the "letters" about Alex Barton. Not only do the letters themselves put up my blood pressure, but the comment section makes me positively see red. It's not just ignorance. It is a display of positive malice towards people with disabilities and people with autism, and venom towards their parents who are advocating for them. The fountains of malevolence, spite, and vitriol are just mind-blowing. It makes you want to find out who these people are, write down their information, and make sure you not only avoid their company, but make sure you are not giving them business or otherwise supporting their hatred.

How does one educate people who have no point of reference to connect? The whole human thread thing doesn't seem to work, as they don't seem to see autistic people or disabled people as... well, people. They are some "Other" outside their existence. This is both the cause and the legacy of colonialism- seeing people who are different as Other, instead of as people.

The outpouring of sheer, unadulterated hatred that has resulted from this situation is something that strikes fear into my heart for Joey. People really do see autistic children as spoiled, horrible brats who need to be humiliated, abused, and isolated. I have become hardened to the judging glares of others since I started this blog (and I think they have diminished because Joey's frustration has gone down and his self-regulation has improved, so less people notice anything odd about him), but letters like these are stark reminders that these feelings are there, that one must be careful not to "brand" a child with a label (instead of having the label as a tool for support), and that, ultimately, there are a lot of stupid, nasty people out there.

Thank you for not being one of those people.

Vignettes of Summer

"Come be a bus driver!" Joey sticks his head in the door and invites me to join their world. I glance around the kitchen. Half of it is gorgeous, because I have hepl these last couple weeks, trying to get a handle of something in my life. The other half is a disaster. And my help is due any minute.
"Be Ms. Frizzle?" the voice calls in again. I turn to that little face, who on most days would be absent at this hour- at school. He's six years old now. He looks tall. Well, he is tall. Growing up fast.
Kitchens can wait. I turn obediently into Ms. Frizzle. Outside.


We have some minutes to kill before speech therapy, so I decide it might be a good chance to drop by A.C. Moore and get some stickers and art supplies. The boys chatter behind me.
"No Miss Nikki today! No Miss Janine today!"
"I'm a T-Rex! RAWR!"
"OK, guys, here's the plan. Are you listening?" I put the L-sign to my ear to make my point and grab attention. It semi-works.
"Listen! I want listen! No listen! No hear!"
"Aer you listening? Here's the plan, guys. We are going to go to the craft store and get some stickers. Then we are going to go see Miss Nikki."
"No Miss Nikki today."
"RAWR!!!!"
"Yes, Miss Nikki today, sweetie. So we're going to the craft store, then to Miss Nikki."
"The store? What store?"
"The craft store. We're going to buy some stickers."
"The crap store?"
HIs Dad would be so proud.


Andy and I sit in the waiting room, waiting for Joey's return. He taps my head.
"GOOSE!" He squeals as I get up to chase him around the island of chairs.
"Duck," I tap him on the head.
"Say GOOSE!"
"Duck." He giggles. "Duck."
"Say GOOSE!!!"
"Penguin." More giggles. "Duck. Duck. Monkey. Swan. Panda."
"Say GOOSE!" he squeals and giggles.
"GOOSE!" and we're off.
The other lady in the room just glares at us. She is completely missing the fun, poor lady.


One great challenge here remains getting Andy to eat, especially at dinner. Conventional wisdom about just letting the child go hungry (well, not eat) doesn't help much- Andy would happily go hungry at dinner, and spend the rest of the night screaming about being hungry (until food is presented- then he'll happily not want to eat again.)
So tonight is leftover night. Curry Chicken salad with asparagus, Indian chicken, chili casserole, or peanut butter and jelly... naturally, both boys choose PB&J. But I fool 'em- I use multi-whole-grain bread. Then i slice up some watermelon, and voila! Dinner.
I start heating up leftovers for JoeyAndyDad and I, as the boys settle into the evening meal. Andy is jumping on the trampoline, Joey is intent on the food. Drinks are fetched. Plates are heated. I get to sit down. JoeyAndyDad gasps.
"I think that's the first time Andy has finished first."
I look over at Andy's plate. It's cleaned. Joey is still chewing on a sandwich quarter. JoeyAndyDad and I have hardly started. Not only is the first time Andy's ever finished first, I think its the first in retrievable memory that he's even taken a single bite before the rest of us have finished.
"Want dessert! Want cake!" he announces proudly from the trampoline.
Cake it is.

What is up with bubble gum?

When I was a kid, bubble gum was the bane of parental existence. I liked bubble gum OK, and it was fun, but there were some kids I knew who chewed it extensively, as Violet Beauregarde extensively. Kids blew bubbles big enough to stick to their hair, smacked it and popped it, and made it crackle in class. It came in packs. It came with trading cards. It came in little balls. It was everywhere.

Joey, and increasingly Andy, do well at focus and calming with bubble gum. Regular chewing gum is not as good; you need the soft square consistency to get the desired effect. The liquid-filled crap is right out. The oral heavy work is calming, stabilizing, and organizing.

To our surprise and grief, bubble gum is becoming increasingly difficult to find. For a while we got it at Target, and that was fine. They had the yummy chocolate kind, and Joey really liked that. Then Target switched to the yucky liquid-filled kind and no more chocolate; we went to CVS and found our treasure, though only in strawberry or watermelon. So be it. But now they've gone to tape or liquid-filled. So the hunt is on... where to find bubble gum in a consistent supply? Why doesn't any one store sell the whole selection of bubble gum? Am I going to be reduced to ordering it online, where you have to buy it in bulk (I wasn't thinking I was going to need to make a sudden $75 investment in bubble gum!) (*note: the investment is because generally, sites offer free shipping at that amount. Otherwise, the shipping is the same as the cost of a whole box of gum...)

So what's the deal? Are kids not chewing bubble gum anymore? Is ther some kind of bubble gum strike? Why can't I get my hands on regular, yummy, not-stale bubble gum???

Monday, June 16, 2008

Boys at home

We've been to the park today. We've played in the yard. We've watched a couple episodes of Magic School Bus.

It's just after 11:30 in the morning.

I'm hoping to get the pool out this afternoon. Ah, the full days of summer are upon us.

When I was young, summer days were spent by the river, after a morning in the garden. My Dad loved to till the garden, but then all the work was left to us- the planting, watering, weeding, picking, etc. My mom did a good job of making the work part fun. My Dad had a knack for extolling the virtues of something, doing the fun part of it, then expecting the work to be done by somebody else.

Sometime it left everybody feeling like the Little Red Hen. Only you weren't the one who found the seed; Dad handed it to you and said, "Let me know when the bread's out of the oven."

Sometimes he didn't even want the fun part. He'd get all grumpy because there was fun to be had, or refuse to do the fun because it wasn't his idea. I assure you that there is little more annoying than to be trying to have fun and have some grumpy person scowling at you the whole time, or suggesting something fun, only to be told off. How dare we think of something fun?

So a lot of summer days were spent in the woods. Wading in the river, lying on the moss, these places were safe to have fun of your own invention. And not a weed in sight.

Sunday, June 15, 2008

Happy Daddy Day!























We love you, Dad. Here's to lots of days and lots of adventures with you!