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


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.