Wordless Wednesday: Our Day at the Zoo

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???

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.

Happy Daddy Day!

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

School's Out

Four weeks.

I have one week scheduled for Vacation Bible School. That may be an adventure in and of itself. So that leaves me with three weeks.

How much life can I pack into three weeks? How many trips to the beach, the museum, the farm, the mountains, the zoo? Will I be able to afford the gasoline to get there?

How many mornings can I spend by our backyard pool? How many afternoons can be spent at Grandma's?

How do I get a handle on the time, so it doesn't just slip away?

Then both boys go back to school for half-days. Andy goes to camp for four weeks. Joey goes back to school for six. Then we have another week off before school starts back up in earnest- a 4-year-old preschooler and a first grader.

Wow.

Rest in Peace, Officer Bahr

The funeral for Officer Todd Bahr was today.

Officer Bahr was killed in the line of duty on Friday, shot in the head, probably by a man who was later killed in a shoot-out with police (the police didn't kill him; the coward* shot himself). For some places, the idea of a shoot-out might be a daily, no-longer-newsworthy occurrence. Here, it is a shock beyond comprehension.

We haven't lost an officer in the line of duty since 1964.

Mom wanted to see the procession, and I thought it was a good idea. I hadn't pulled Joey from school, but I thought Andy should see it. The escort of mounted officers... the lines of officers from all over the region, both Virginia and Maryland... the emergency vehicles. Two ambulance drivers who were not able to go to the funeral stopped at the roadside with us (and several dozen other cars) to see the procession, to take photos and footage for their comrades who remained on call. The entrance to the cemetery was flanked by fire engines, their ladders up to hold the flag directly over the entrance. The procession took about 45 minutes to pass (we didn't get to see the whole thing- only about 1/2 an hour).

I agree with mom- I think they should have closed schools and lined the route, had the children watch the display of respect and mourning for this person.

Police officers put their lives on the line for us every day, so we can be protected, we can be helped, we can have someone to turn to when trouble strikes. Every child in this city should have seen what this means when an officer is killed. They should have stood there and shown their respect, they should see the lives and families who risk everything, every day, so they can go to safe schools, ride on safe streets, walk on safe sidewalks. They should see how precious a single life is and can be.

I am sorry I never met Officer Bahr- at least not knowingly. I thank him and his family for their efforts and sacrifice in keeping my community safe.

May we never have such a procession again.




*If it proves to be, as we all suspect, that this person really is the person who murdered Officer Bahr, please substitute any and all deragatory terms of choice here. This is a family site, but we invite you to use your own imagination.

Wordless Wednesday: An Ode to the Backs of My Children's Heads

More thoughts on our bakesale book

Thought I had forgotten, eh?

No, I've been up late at night contemplating ways to make this work. Publishing a book is no real problem- my mom publishes books, and we do an on-demand printing. Then we can all use the book for fundraising for our particular projects. To raise the funds for set-up, we can sell the book via Amazon. We just need to agree on a price. That can't be set until we know some specifics: How many pages will it be? Paperback or hardback? What size- do we want it to be more like 8X5, or more like 11x9?

Then we need content, of course. And lots of it- but not so much that we can't do a volume 2! Do we want to do a regular book, with main dishes, side dishes, and desserts? Do we want specialty sections, such as special diets and special needs recipes? Do we want to break it up so that this first book is main dishes, a second volume of side dishes, a third volume of desserts? Do we want to do a general book now, and then if it takes off, do specialty volumes?

I figure to put in a recipe(s?), you just send it to me with your name, and possibly some extra information for marketing- like the disability your child has, what you are raising funds for (would need to be long-term projects, such as saving for adult services or long-term therapies), perhaps descriptions of some of the therapies that work for your family? Also, some artwork would be a good idea. Black-and-white lineart is best with the on-demand system (as opposed to photos).

We can then order books when we are doing a fundraiser (like our big bakesale... that still needs to be organized!) or just take orders for them, and not have boxes and boxes of them laying about.

The Floor Dwellers

Andy and Joey both love to step on things.

I'm sure its a sensory thing, extra pressure and texture on the bottoms of their feet. They are not picky about what it under their feet; they seem to be absently pressing their feet onto the objects. Often they stand in the middle of the floor, absorbed in their little worlds (or the TV), with something under their feet. I usually have to tell them to stop stepping on whatever it is.

Joey often steps on things because his motor planning is poor. It take a lot of extra planning to lift your foot and place it on the floor somewhere other than your natural gait. It also is tricky to be watching the floor while you are trying to plan out where your body intends to go and hurdle your body in the exactly correct direction.

What I am talking about is different. This is a deliberate action, a purposeful, slow, planned stepping on an object.

this becomes a real problem when the object they are stepping on is not intended to take any weight. Like metal buses, fishing poles, pens, blocks. Either we end up with broken toys, or broken feet.

I may take up massaging their feet.

Alex Barton: Civil Case in the Works

Yes, the Bartons have notified the district that they intend to sue. The district has six months to respond.

I hope they win. I hope the District uses this as an opportunity to change their system and train their teachers. I hope they have to pay for Alex's psychological counseling and a new school placement, such as a private situation with full support. I hope they respond to the filing by clearly agreeing to do these things, and then following through.

The district now has a fabulous opportunity to right some wrongs. Let's see if they do the right thing.

Update: The Cardiologist

It's official, I've talked to the cardiologist about all those tests I took last week, and they are all negative. Stress it is. Oh, and avoid things that might aggravate it, like caffeine. Oh, and I gained seven pounds. Lucky me.

GO NIKSDAD!!!

I know I get some spill-over readership from the medical blogs I read and comment on- thank for being here! I'd like to invite all folks interested, including you medical-types, to cross fingers, pray to deities, and otherwise think great thoughts for Niksdad, the dad of Nik and husband of my friend Niksmom, who takes his exam tomorrow to be an LPN. Here's rooting for Niksdad! WOO-HOO!!!!

Alex Barton update 3

Just some more stuff on Alex Barton, to make up for the gap of my other posts:

Alex Barton and his family get support.

An article about placement and LRE and the balancing act of figuring out appropriate placement.

An article in support of Ms. Portillo.

An interesting column about the heart of the problem.

Editorial about autism in classrooms.



There are several letters written to the paper, so you may want to put "Alex Barton" in the search box and take a peek!

Wordless Wednesday: Summer Begins

A note on Andy

Some of you may remember that I have two sons. Joey is the autistic one. Andy is not autistic, but he does have sensory integration dysfunction (or sensory processing disorder, whichever you prefer). We have him in occupational therapy and in school, and he's made improvement.

He has now turned four, so it is re-evaluation time! We were hoping he was ready to come out of therapy at the end of summer. But it's a no-go. He's come out in the 25th percentile in fine motor skills, he's developed some new sensitivities that need to be addressed. So we're here at least through the fall. This makes Andy pretty happy, actually, because he gets to see his Miss Cindy that much longer.

With the 25th percentile, I could probably request special education again, but frankly, he's happy where he is and working with the preschool was like trying to get an alligator to ride a bicycle. If we are still here when kindergarden comes around, I might ask for child find again. Our kindergarden team rocks.

The Moments to Live For

It is one of those moments. He had reached out his hand, and tapped me lightly on my head, pulling my attention from the computer screen to those eyes... sparkling with the devil in him. I like to think that glint is a bit of my great-grandmother in him- the one who teased her Methodist minister husband with her evening drinkie. Yes, there it is- that sparkle, that moment before he brings Mommy into the game, makes that connection, creates more joy in the world with wild giggles, all with one magic word:

"Goose."

Excuse me while I get to chasin' my boy.

To reveal or not to reveal: that is the question

When do you tell people your child has autism? How do you explain autism and being autistic?

Joey goes to Sunday School. We haven't gone quite as much lately, because the new building is full of new chairs and new carpets and all the sizing and chemicals that go with new carpet and new upholstery, and apparently I am allergic to it. But he goes.

There were multiple purposes for him attending Sunday school. Primarily, it provides him some religious instruction. That has become less of a reason because the instruction I have been seeing isn't what I was hoping for- it looks far more Baptist than Methodist, and we're a very Methodist family. It also places him in a "normal" setting with non-disabled children. That has gone OK so far; we met with his Sunday School Supervisor and the teachers last year, though this years' teachers haven't been as willing to be trained. Being pat of a church gives him a church family, and a possible support network as he gets older. Also, we have a "contemporary" service and Joey liked to go drum and listen to the music, which we also haven't done lately. When they moved to the new building, it really threw him off, and he's had to start from scratch in getting used to the room again. With my allergies, he hasn't had much opportunity, either.

The Sunday School is fairly informal, with children coming and going depending on whether their parents decided to go to church, including guests from elsewhere. There are regulars like us, and then there are other random kids that come and go, or new families who move in and join.

Usually after Sunday School, we go get some McD's for lunch and try to talk about what they learned-mostly Bible stuff (If you aren't Methodist, you might not understand why I find that interesting enough to note. In other Methodist churches, Sunday School consisted of using modern material to discuss Biblical ideas. You didn't learn the Good Samaritan, you learned stories about modern children who helped their families and neighbors in all sorts of [mostly mundane] ways, thus providing a model for appropriate behavior and values). The boys usually like being in Sunday School and are often in good moods after.

But not yesterday. Yesterday, when I dropped the guys off, they were in pretty good moods; but when I picked them up, Joey was "sad". His teachers said he had been sad all morning. As usually, they had no idea why. However, I had an inkling- a new child was in the room when I dropped him off, and when Joey echoed something at the child, the child had objected (Joey;s very into races and winning races this weekend, and the child told him point blank "But there's no race!" when Joey tried to include him.) From talking to Joey, apparently that was not the end of the incident, and his friend Lucy (a little girl who has been in Joey's Sunday School class for over a year now) intervened ("She played with me").

This is a problem we encounter more in Sunday School than I was originally expecting- partly from my own naivete. I have seen several children not only actively avoid Joey, but being encouraged to do so by their parents. When you mention that Joey is autistic, their faces go hard, and the avoidance is redoubled. Joey's old Sunday School teachers would regularly remind students about autism and that Joey needed do "do his own thing" like move around the room and write instead of draw. (These reminders also served to educate new class members). These teachers seem to want to ignore it. Their idea of inclusion is to simply treat all the kids the same, and since Joey is so "high functioning", hope that he blends in enough to be OK.

The result is that some kids accept him, especially ones that are used to him. And some kids think he's really weird, and avoid him. And some kids think he's so weird, they tell him what they think of his weirdness- and this makes Joey sad.

I think asking Joey to change and "be like everyone else" is unreasonable and undesirable. However, leaving him to the wolves to fend for himself against kids who have never dealt with a disabled peer is also not fair- not to Joey, and not to the other child. After all, when they ostracize Joey, they miss having a cool friend! Though I don't want Joey labeled and seen only for his autism, I don't want him to be excluded by his peers because of ignorance if I can help it. So which approach to take? Telling people he is autistic, or trying to let him "blend in"?

Singing his heart out

Just a few glimpses at Joey in his school Memorial Day concert. He had a wonderful time, loved the sining and signing, and did a fabulous job. I am so proud of my boy!