Monday, December 26, 2011

A Boy and his Santa

Merry Christmas.

Friday, December 23, 2011

Merry Christmas!

Joey says that when he grows up, he wants to be Santa.

I bet he'll be the best Santa ever.

Saturday, December 17, 2011

No, No, Stimey...

THIS is a Christmas Tree:

There is no Christmas Waxing like Christmas at my house. ;)

Tuesday, December 13, 2011

Being Social

Joey has himself two girlfriends. Who happen to be best friends. And both know Joey is sweet on both of them, and think it's fine. Ah, puppy love.

I got to see both young ladies this morning, as I took Joey's komodo dragon model in for him to paint at school. I knew the one young lady from last year, the other young lady is new. I was a little surprised to find I had permission to know our new friend's backstory. Then I heard it. I am not at liberty to share it, but let's just say my heart broke a little, watching that lovely young lady and understanding what challenges she faces. Joey adores her, and she is very serious about being "Joey's Buddy" and helping him with certain aspects of his day.

It was a reminder to us that there are going to be other challenges when you are in the world special education and special needs. So many of the kids in, say, Andy's class, may go through their entire school careers without having to discuss the needs of their friends, or that a friend is sick, or that a friend may go away. These events are rare outside the special needs community- so rare that children are often shocked and unprepared when their friends have needs, or get sick, or something happens to them. I am going to be working on strategies to help my guys deal with these things, because for us, it is a fact of life. Our friends have special needs, they need special kinds of attention and extra work to be able to play with them, our friends are often sick or get sick more easily and more intensely, and sometimes, things happen. We have not just one rare friend who hits the brick wall. Most of our friends face that wall every day of their lives. We have friends for whom every day they live is beating impossible odds. Every breath they take is a victory. Every moment with them is that much more precious. It isn't rare around here.

It was also a wonderful reminder of how far we've come. Joey is picking up on the rewards of being social, the skills needed to be social, and the joys of interaction with peers. He expresses his like for his two girlfriends- and I think we can call them both this, as in "sweethearts"- in a manner that is appropriate for his age. Other than being fascinated by their hair, he is completely appropriate. Holding hands now and then, spending time together, being buddies- all fine. And normal. And social.

You go, Joey!

Friday, December 09, 2011


I haven't been writing. I have a plethora of little items I could smatter across the internet, but nothing that forms into a solid post. It's disconcerting. When one cannot get a grip on the little things, stringing them together as a necklace, the whole world becomes scattered.

Andy has started his OT. It is already making a difference for him at school, as he will now write more, especially after therapy. I have to pick him up from school, go to therapy, and then take him back, twice a week for the next three months. However, I am totally glad I didn't wait for school to move on it. Our eligibility meeting isn't even scheduled, and it could be the end of February before they get to us- which would, of course, be at the end of the three months. Having Andy struggle at school with no support for another three months would be devastating.

Driving down the road, having just paid up the co-pays and the gaps in insurance, remembering days when insurance wasn't helping with either child, I kept thinking of a Mastercard ad. OT, $100 an hour, twice a week. Speech therapy, $95 an hour, twice a week. ABA therapy, $90 an hour, four hours a week. Having your autistic child call you "mom" for the first time? Priceless. Having your ADHD and sensory dysfunctional child be able to sit in a chair and write a sentence? Priceless. I need to get Joey a new speech therapist, we've been without one far too long.

Joey is working on an animal report for school, which includes a written report and a model. I puled out my celluclay, but forgot how long it can take to dry. Joey is upset that he doesn't have his model to take with him today, but our very understanding teacher is going to allow us to turn it in on Monday. I just hope it dries enough to paint it over the weekend.

The Christmas decorations are slowly going up. If you want a sample of years past, you can check it out here. It is going slower than usual. We have Evan with us for the forseeable future as he searches for a job, so he can then get his own apartment. He's been a huge help with moving boxes about, but I'm not getting things done after the boys go to bed like I usually do, because he's downstairs and I would be in his space. I also don't want to annoy other folks with my constant playing of versions of A Christmas Carol while I work. I hope to get the glass garlands up today while the boys are in school, its hard to do those when the boys are running around the base of the ladder.

This morning, I am teaching some of the kindergarden classes how to sign Jingle Bells. I've been practicing all week. I'm a little nervous, but I don't think the kids will mind if I mess it up a little.

Time to be a pinball for the day...

Sunday, November 27, 2011

Heading Back: A Thanksgiving Break

Breaks are always hard when you thrive on routine. That routine is shattered, and around here, there is little to take its place. We're not very organized. Each day is a surprise. You just never know.

We've had some bright moments. Joey helping make cranberry bread. That moment at the Thanksgiving table when it was time to say grace.

"Andy, do you want to say grace?"
"OK. Joey, would you like to say grace?"
"Ok! Go ahead!"

There's been cuddles and games and stories and adventures. Grandma even got her Christmas tree WAY early this year, and we put the lights on it. Everything was all going great until today. See, tomorrow they go back to school. Joey's been fragile today. Lots of gabble about how many days are in a school year, and how girls don't like him, and he doesn't want to go back to school.

At bedtime, he was crying. He didn't want to go to school. School had too many days. His principal had doubled the days of the school year. The kids were laughing at him in class. He didn't want to go back to school.

We'd talk about it, and all the fun things at school, and how all his teachers are good and care about him. We think there may be some issues with students. We think there is an issue with the aide. We know the break is making him fragile. I think we may be seeing a myriad of little issues, coming together to overwhelm at once- no one thing to point to and say, "fix this, and it will all be OK." I remember being very annoyed as a child when fifty trillion little things built up, and adults ask. "What's wrong?" as if there was one thing i could give as a clear answer. And any answer I did give was always something that, individually, was trivial. Added to the pile of other trivial things, it wasn't anymore, to me.

My poor little guy, we've finally gotten him settled to sleep, but I bet it is going to be a hard night, and a harder morning. I just hope once he gets into school and gets his hugs, he'll know where he is and be comfortable again.

Wednesday, November 23, 2011

Getting Ready

Joey loves to cook. At least, he likes mixing things, and he likes that there is usually food at the end of the process. I've been using this for a variety of reinforcements. Having trouble understanding how to set up a science experiment? Bingo! Cookies. Need some extra hand strength? Bingo! Cookies. Need to work on following instructions? Bingo! Cookies.

Then i wonder why we all have a weight problem. Except Andy, who doesn't care for cookies.

This year, we've been moving it along a notch. I had Joey help me make whipped sweet potatoes last week. This week, we tackled cranberry bread. This is a real feat, because this isn't a throw-it-in-the-bowl recipe. You have to stop and cut in butter cold, requiring hand strength and stamina as you have to grind the cold butter and the sifted flour with your hands, and you have to do it quickly so the butter doesn't melt from touching it. If you know how to cut butter, you know it isn't hard, just tiring if you don't have good hands.

But Joey gave it a good go, and actually did a fabulous job:

The bread looks perfecto. We're having it tomorrow at dinner. I can hardly wait!

Tuesday, November 22, 2011

Driving to School

Andy has become a morning car rider.

It started when he complained of headaches- in the afternoon, getting off the bus. At first, I investigated possibilities of trouble on the bus. A child was poking him and teasing him, so we had his seat changed. Earplugs were offered, but that caused trouble, too. Questions were asked about comfort. Then we got reports of morning trouble at school. He would have issues, then would "clear up and have a fine afternoon." I was suspicious. Then he just flat-out asked if I could drive him. he wanted to be car rider, because of the headaches.

So in the morning, I have been taking him to school, so he can at least start the day quiet and headache-free. I really can't fetch him in the afternoon, because I can't sit in line, grab him, and be home in time to get Joey. Instead, I try to give him some time to calm before pressing homework upon him. Homework is a whole other can of sensory and being-7 worms, subject to new strategies as the old ones wear thin and wear out.

Tomorrow is out first of what will, should this one go well, be a series of meetings to get Andy's needs met so he can focus on his learning, rather than bouncing or dealing with headaches or having tired hands all the time. At least we'll be through Hoop 1 before the Turkey Holidays. But at the same time, anxiety gnaws. Will we be brushed aside yet again? How much of what we are seeing is ADHD, how much sensory problem, how much of it Andy needing attention and getting it in a way he sees as working? Does he need more attention? What supports does he need to learn to cope with ADHD and sensory issues? What surety will I have that those accommodations will be honored? What else is going on that I am missing? What will I do if we're told he needs nothing, doesn't qualify for service or accommodation?

Thursday, November 17, 2011

Round 4


I just turned in the paperwork to put Andy through the Child Find process again. The fourth time. Seriously, this is getting old.

I had him evaluated because his teacher was concerned that he refused to write at school, and he was getting headaches on the bus. What we got back was some very serious issues with motor integration, writing, and coordination. As in, yikers percentile. As in, if we had done something about this before, we wouldn't be here now.

Fourth time. I don't think they believe me.

Saturday, November 12, 2011

Happy Birthday, Beau

Wishing you joy.

Thursday, November 10, 2011

School Pictures

Yep, tis the season. First I got home this nice set:

Pretty good, for a school picture.

Then in yesterday's pack was this:

Check out the jutting bottom teeth. Great. I looked down to find you send in a card if you don't like a picture, on retake day. And retake day is....


Seriously? Un. Happy.

Sunday, November 06, 2011

Another place to peek

I put up some more yummies at Cooking For the Kids. I should cook more.

Friday, November 04, 2011

Halloween at our house

While I prepare for the next holiday season, here are some shots of the one just passed.

Tuesday, November 01, 2011

October Blooms

Take a peek in my garden gate.

Saturday, October 29, 2011

Why, Yes, I Do....

Why, yes, I do have a child with autism living here... why do you ask?

Thursday, October 27, 2011

Happy Birthday JoeyAndyDad!!!!

Because I have an awesome, wonderful, rockin' husband. And he lurvs him some squishy boys.

Happy Birthday, my love.

Tuesday, October 25, 2011

Missing: Robbie Wood Jr.

One of our local children is missing. Robbie Wood has autism. He bolted from his family while they were touring a battlefield, and his father was unable to keep up. Even Joey can move like lightning when bolting.

The Wood family is living a nightmare I hope I never know- but I know it is a distinct possibility. Joey bolts. Over the past year, it got so bad, we did consider joining Project Lifesaver and having him fit with a bracelet or anklet that would be able to track him. I think more families with bolters/runners (of any age! Project Lifesaver started for tracking people with Alzheimer's who wandered away) should be informed about this program and how to join, so they can consider their needs and have this important option.

If you have a bolter/runner, please consider the option of Project Lifesaver. Sometimes, you just need to find them, fast.

UPDATE: THEY FOUND HIM!!!! Alive and alert, and med-evaced to Richmond. Woo-hoo!!!!

Thursday, October 20, 2011

Person First

We had our first Special Education Parent Advisory Committee last night. Just call me Madame Chairperson for another year, thanks. I hope this year's opportunity doesn't slip through my fingers like last year.

Our director of student services handed out a very nice article about person-first language. Language is a tricky thing, since it is so powerful, yet so flexible. Language is a tool for us to communicate ideas, knowingly... or unknowingly. Showing respect should be of the utmost importance, and person-first language should absolutely be the choice, particularly in professional contexts. A professional, not knowing me, my family, or my children, should refer to Joey as a person with autism. The emphasis when speaking about Joey should always be Joey; just as you would probably prefer that anyone speaking about you should emphasize you, not some facet of you, large or small.

You may have noticed that is not how we solely refer to Joey ourselves. In fact, I get emails about it regularly. For us, Joey is autistic. Autism is not something separate from Joey as a person. It simply is a fact, one of many ways to describe Joey. When it is the important fact in the context, then it becomes the adjective of choice as appropriate, just like any other: Joey is tall. Joey is happy. Joey is squishy. Joey is intelligent. Joey is handsome. Joey is autistic.

The great thing about using person-first language is that it emphasizes the person, something that gets lost in a world of labels and misinformation. Or more properly, someone who gets lost, especially when they are surrounded by people who are intensely ignorant of disability, ability, and special needs. It become important to communicate to such people that everyone is a person. It is vital to emphasize to our children that they are who they are, to highlight their ability rather than disability, and that their disability is a neutral factor in their existence; they are not poor, afflicted, suffering victims. They simply are who they are, and we start from here.

Yet there is something in acknowledging that they are who they are, and that some disabilities are intrinsic to who people are. Joey would not be Joey if he was not autistic. He would be a completely different person. I don't even know who that person would be, or would have been. They don't exist. Joey is not, to me, just a "child with autism", because there is no such person as Joey without autism.

But far more importantly, we are paying attention to how Joey refers to himself. He is not yet talking about autism. Just as when he was small and I had no name, I just was, for Joey, autism just is. One day, he will process that the way he thinks and understands and experiences the world is referred to by the rest of us as "autism." Then comes the true test of person-first: referring to Joey as he prefers to refer to himself. Will he be "me, with autism", or will he simply say "I am autistic"?

Down Syndrome Awareness

October is awareness month for many causes near and dear to my heart, including Down Syndrome. We now have a variety of friends with Down syndrome, and are so glad to have them. They are wonderful people, and we have learned a lot about the differences between expectations, popular misinformation, and reality.

If you are new to the Special Needs or Down syndrome community, the National Down Syndrome Congress has a wonderful page for you to visit.

One of the best things about this page is how people with Down syndrome are understood as "little packets of human potential." It reminds me of my own parents, who always said of babies, "There's a whole person in that tiny little package!"

And you know what? It is absolutely true.

Go ahead, take that first step into community, acceptance, and celebration of all people. It is worth a few minutes of reading.

Tuesday, October 18, 2011

I So Did Not Want To Leave The Park Today

The sun was shining, the leaves are turning, one simply cannot waste such an afternoon. The boys did their reading, then off to the park! woo-hoo!

Usually, the park is a mixed success. Andy finds himself some friends, runs around, and has a grand time. Joey prefer to walk in circuits, look at the babies, and wander up to people at random and try to talk with them.

As an interesting side note, I can tell a lot about people by watching how they react to Joey. Some folks play right in. Some smile and try to participate. Some tolerate. Some shun. Some even get nasty. The gauge has yet to be wrong, either.

Today was looking pretty typical. Andy found some kids about his age, and starting running about with them, letting the slightly younger ones join in. He's good at that. They spent the afternoon playing Star Wars all over the park. Andy looked a bit like the Pied Piper, as he apparently was the leader of the battles; so everybody was running after him (and he's a head taller than all of the others, even the ones his own age).

Joey found the babies. One of the families questioned why he was in that area of the playground since he was "clearly older than five." (So are you, dude. It isn't like Joey is blocking your kid from playing on anything, or bouncing on the spring animals. He's trying to play with your kid.) Joey picked up on the nasty right away, and gravitated towards a couple other babies with nicer parents.

And then it happened. A group of four kids appeared; they looked about Joey's age. Two girls, two boys. They looked so much alike, they must either be related (siblings? cousins?) or see a lot of each other. A clique, coming to have fun in the fall sun. Joey noticed them right away, and pulled himself away from the little ones to go check them out.

He didn't directly approach them at once. He found a stick, and wandered over to that section of the playground, the one with the bigger slides and the new seesaws. He walked about the area for a while, seeming absorbed in his stick, writing in the air, making a careful circuit. But I realized he was checking those kids out. I wondered how much he really saw in his peripheral vision; I suspect he was using it heavily to observe this interesting little group. How to approach them? What to say? What to do?

They didn't wait. One of the girls called him over. One of the boys recognized him. They asked him to play- to get on the seesaw with them, help them take turns. They even had him help one of the girls, who was skittish about the seesaw; he kept the boy on the other end from taking her too high, and he patted her hand. And when it was time to go home and get dinner? They gave him high-fives, and told them they were glad to see him.

They were glad to see him, happy to include him, the one girl said she was happy to meet him, and hoped to see him again soon. He was beaming. So was I.

I can tell a lot about people, by how they treat Joey. We so did not want to ever, ever leave.

If It Is Demeaning, It Isn't Humor.

Yes, bouncing about the internet are those lovely little sayings, and now its so popular to stick bumper stickers in your facebook news. The one I shall jump upon my soapbox this evening to highlight is: "My sense of humor may hurt your feelings. i suggest you get over it."

Why do people think that demeaning others is "funny"? Why do people think it is OK to get pleasure by causing another pain? How would they like it if it was their feelings being hurt, their lives being demeaned? What happened to that basic of respect, treating others as you would want to be treated?

Do people really think I ought to keep this in mind the next time I hear or see a "retard joke" in front of Joey? Sadly, they do. Really. I wonder what those people would think if I took a baseball bat and smacked them upside the head with it. Hey, lots of people think slapstick is funny, right? Do people not understand that emotional pain can be far more damaging than physical pain?

Humor is a very culturally determined thing. As culture emerges from the dark and learns how important respecting others really is- and how well it really works- we change our idea of what is funny. Little Black Sambo is not funny, it is demeaning; and when society realized it was demeaning, Little Black Sambo jokes disappeared.

But there are still groups and people that society do not see as fully human, and so demeaning them is seen as acceptable. When those groups begin to protest, telling them to just "get over it" is not acceptable, either. There are plenty of wonderful, joyous, and really hilarious moments in the world, without having to cause another any pain at all. Causing pain isn't funny. Hurting isn't humor.

No, I will not get over it. I hope that you will, instead, rise above it.

Wednesday, October 12, 2011


Christmas is a-coming and the goose is getting fat. And I like to have my shopping done by now. Once again, I have failed; such is life with children.

Yes, the children. I have started putting off the shopping completion because I have children; notoriously fickle, it is better to wait a little closer to the holidays to be sure what will interest and delight them. A child into blue and Star Wars today may want green and Ninjago by Christmas. And this is October.

Fortunately, I can go ahead and get some things, hitting the sales of the pre-Christmas clear-out, because my kids are not as fickle as some. I usually set aside some budget, though, for December. You never know.

Andy is easy. Up until now, if it had a dinosaur on it, you were all good. This year, ninjas and Star Wars reigns, and he is becoming interested in superheroes. Get him some toys in theme, grab some Mario Brothers knick-knacks for the stocking, all set and ready to go. Easy-peasy-lemon-squeasy.

Joey, not so much. The themes, I can do. Toy Story, Mario Brothers, baseball, a touch of Obi-Wan Kenobi. But what to buy? Joey doesn't play much with toys. He never did. Now he's nine, he plays with toys even less. I think if I filled his stocking with wooden spoons, his cup would runneth over. Never fear, I will have some for that purpose. After all, Christmas isn't about giving people things, it is about thinking about them and trying to bring them joy, about sharing and letting them know how much you love them. I could toss a lot of Star Wars toys at Joey, and he would be fine with that; but they would then just clutter his room or be co-opted by Andy. He already has an entire bin of wooden spoons and sticks, and five calculators. What to get the child for Christmas?

Of course, just when I find myself in quandary, we get snippets, little glimpses into that head. I took Joey with me to the auction on Sunday. I was surprised he wanted to go; the first time we went, he clearly was uncomfortable with the pace and the crowds, and last month he made it clear he did not want to go. This time, he asked to go, so we went. He was happy to play with his brother. Then things got started, and he wasn't as happy. He showed interest in a box with some toy trucks in it, so as they neared it, I grabbed him and tried to teach him how to bid. He seemed very pleased, especially when he bought the trucks (whole box, $4). Then he wandered off, and didn't so much as glance at them again.

I brought them in from the car Sunday night, and put them in the hall, and forgot them (if you've seen my hall, you know how that can happen). No notice was taken of them. It dawned on me that he went because Mommy was going and he bid because Mommy told him to. Oh, well.

But then, Tuesday morning came. The trucks were noticed.

"The trucks from the auction, Mommy!" Joey chimed, touching one.
"Yes, dear, they're yours. You bought them, remember?" He picked one up, held it a minute, put it down, moved on. Oh, well.

Then Tuesday afternoon came.

"The trucks from the auction!" He seemed joyful, pleased. He took the box into the livingroom, started playing with them- lining them up, arranging them in the box, using them to drive his little Obi-Wan Kenobi figure over the carpet. He showed them to Andy, who also commenced playing with them. Happy, happy boys. The babble began. "The auction trucks! They are here! Someone donated them to the auction. Look, the trucks from the auction!"

Maybe I'll go ahead and get some of those toys after all.

Monday, October 10, 2011

Sign of the times

Graciously emailed to me by Uncle Evan:

Andy: I lost a tooth!
Joey: He lost a tooth! Call the Tooth Fairy!
Evan: I'm not gonna call the Tooth Fairy. The Tooth Fairy is very busy. Maybe I'll email the Tooth Fairy...

Wednesday, October 05, 2011

Wordless Wednesday: Pumpkin Days

Updates from us

Why haven't I been blogging? Because I have been busier than a swarm of ants on a tossed-away caramel apple. Hopefully, I will get some writing time in later today. But I am making no guarantees. Meanwhile, here's a quick peek:

Andy's teacher says he is definitely ADHD, "but it isn't affecting his ability to function." Question: so why are we having this meeting again? (But I will say she is being very proactive and understanding, so I think this teacher generally rocks.)

Joey starts his swimming program today through school. Pros: Joey LOVES swimming and water, he gets extra movement every Wednesday for the next six weeks, and he gets the extra sensory time. Cons: He qualifies because he is "moderately to severely disabled." You might notice that "he misses school" is neither here nor there. I doubt he'll fall very far behind in math, which is the academic subject he will miss.

We have confirmed SOL testing is a waste of time and stress.

Andy's teacher has added yet another dimension to homework. We are now up to an hour and fifteen minutes. Every night.

We have our first pumpkins! (you know you want to see that post- PICTURES!!!)

We think our last Challenger game was rained out. We're hoping for a reschedule, but since it would be the third, we're not holding our breath.

We completely re-arranged our house. I got a great, wonderful, fantastic deal on a really high-quality entertainment center set, and the dust is finally starting to settle. We have a new den, and I have two new cabinets for showing off all my collected knick knacks. I have one case just for my cut crystal bowls, vases, pitchers, and wine glasses. Happy happy Joeymom. Now I just need to clear away all the boxes, bins, and detritus from moving furniture and display cases all around.

My cats remain warm and furry. This is good, as Fall has arrived and it is now chilly.

And not for a full post, but as a note to Stimey: I got attacked by not one, but five squirrels, in a mob, driving home from my mom's house yesterday. I swear they all leapt from the trees directly at the car, in a big group, all at once. I didn't actually hit any squirrels, but it was a good thing it was a little back road with no curbs to burst a tire on. And that no one was there to hear me scream like a little girl and swear like a pirate. But, my friend, they are gathering and plotting to take over the world. I am a living witness. Warn Alex.

Tuesday, September 27, 2011

And now for a completely different child...

There are few things that strike fear into the heart of a parent than a note home from a teacher. Especially one that politely requests a conference to address the behavior of your child.

I get used to notes about Joey. In fact, if I don't have one, I worry. What did he do that day? Was there a sub? Was he OK? WHERE THE HECK IS MY JOEY NOTE???

But Andy? Um, wrong child. But, you see, I think we are heading into the world of I Told You So. I've had Andy in ChildFind three times. His speech still lags. He's ADHD. Without that special ed support, we risk him getting a teacher with no clue how to keep his little derriere in his seat and his eyes on his desk long enough to get his work done. Because, see, there are secrets for doing it. On the other hand, we may just be reaching that point when the ADHD is just going to get in the way, and start having that negative impact on his academics and education that I've been told is going to happen, that I warned everyone (including this teacher) might happen, and usually does happen. We just thought it would happen sooner. Perhaps his other teachers had more experience in heading it off.

The day appears to be here.

We've been having a slow spiral into I Don't Want To Go To School and I Don't Want To Do Homework. I have put off the latter by reverting to positive reinforcement: do your homework, and you get to watch the show you wanted on TV, or get popcorn, or get a prize. Hey, it works. And besides, this lady is sending home huge amounts of homework. Now at least I know we'll only be at it about 45 minutes.

The former? Well, I need to get in there and see what is going awry. If he's in a noisy, distracting classroom, then he's likely to be uncomfortable and distracted. This will lead to behavior and focus issues. Which will lead to visits to the office. We don't want to go there.

We'll see how this teacher is going to handle the challenge.

Tuesday, September 20, 2011

Standards of Learning, Standards of Testing, And NonStandard Children

I have Joey's SOL scores. As far as i am concerned, a standardized test is just another instrument of evaluation, intended to give us information about my child. Whenever Joey is evaluated, there are questions I need answered about the tools used to evaluated him, so I can see what the test is telling me about him. What useful information have I gained from this instrument? What is it telling me about Joey and his development? What can be done to help him?

What I have learned from Joey's SOL scores is... he is autistic.

Well, I already knew that, thanks. there is nothing more to be learned here, as far as i can see. What good is that?

For one, the scores don't match abilities we know he has. Nor do they match the reports I am currently getting from school about his abilities and knowledge. What good is an evaluation that tells me absolutely nothing? In fact, it lies to me about what my child can do? Did I learn he has difficulty answering questions? I knew that already.

People want data, but I am not sure people understand what data is or what to do with it. Standardized tests provide data, but is it useful data? Useful for whom? Is it properly analyzed? Or will these scores simply be placed in a column as a negative against my son's school, and against my son? What does this data do to help anyone? Or know anything about... anything?

I am going to be scanning and sending this report to Joey's case manager, so tends to have a much better idea about what this data means, and how it can be used to help my Joey. I'll keep you posted as I keep thinking about standardization, and testing, and data. And Joey.

Tuesday, September 13, 2011

Bus Stop Conversations: Babysitters

Standing at our bus stop is always an interesting experience. I like our neighbors. We have 6 families who use our stop, with 3 who appear regularly. Most of the time we chat lightly about the kids, the teachers, stuff that I can click into mostly by talking about Andy. They ask about Joey, and are always very nice when he is at the stop (when his bus is late in the morning or early in the afternoon). Generally, it's all good.

And then sometimes, topics pop up that remind me that life is different on this side of the street. Usually, it is one of the other 3 families who come and pop into those topics to which I have little to add or are outside our experience entirely. And usually I just either stand there nodding as if I have a clue what their world is like, or strike up a conversation with Awesome Neighbor's grandparents, and drop away from the crowd. And sometimes, I'm cornered, and it can be a little awkward.

One of those topics that rears it's ugly head at the bus stop (and at other unfortunate moments) is babysitters. One of our bus stop families actually has a regular babysitter who gets the kids off the bus in the afternoon. Sometimes there is talk of regularly weekly or monthly outings, a phenomenon called "Date Night" in Momspeak. A couple of the families have whole weekends when they go away "without the kids." And these conversations and events usually lead to a conversation about babysitters: finding good ones, who to use, who not to use, who the regulars are, and even a discussion of "nannies" (by which they mean a sitter like our one family uses, who picks up and cares for the kids in the afternoons). Apparently, most people can pick up the phone, call in a local teenager or college student, and go out for drinks or dinner or even a whole weekend.

I bet for a lot of my readers, that is foreign concept, over which you are now boggling.

Several of the families noticed that we have been having a bit more trouble with Joey than usual over the past year. All of them know he is autistic and have now experienced a little of what that means for us. So whenever these conversations come up, almost invariably, someone suggests that I should "call a sitter" and "get some Mom time."

Seriously? And who do I call? That local teenager? Don't make me laugh.

When Joey was little, we had therapists who came to work with him for an hour or two at a time, mostly doing ABA therapies. These young people sometimes had some background of working with special needs kids. Sometimes we got a fully trained therapist, or a talented one (Hi, Miss Katie!), but mostly we got college kids who were vaguely interested in education careers and had some basic training in ABA and autism- very basic- and they mostly could at least deal with Joey for their two hours. And I would clean things, or play with Andy, or usually both. A few times I actually left the house to run an emergency errand. However, that was before Bolting Joey. And Biting My Arm Joey. And Everybody Hates Me Just Kill Me Now Joey.

We did try the teenager route a couple of times. Kids around here have to get in so much community service for their high school diploma, and babysitting a disabled kid fits that bill. However, you first have to ask the parents. "my kid is autistic" shut that down very quickly. And again, that was before Bolting Joey.

Even when we get people who know Joey to watch him, it can be an issue- problems can rear their ugly heads. It only take a minute for Joey to start the spiral into a meltdown. Or be gone.

Call a local teen with no training and no experience? Fat chance. Call a trained person? Any guesses how much that costs?

No, I don't think I will be calling in a babysitter on a whim any time soon, to run out for dinner and drinks with my husband tonight, but thanks for the suggestion. And the lecture about how I just need to call our babysitter. But give me a little notice, and I'll see what I can do. Not promising anything.

Friday, September 09, 2011

Tired Old Arguments

I'm having one, the slow way- via email and facebook and twitter and stuff. And its the old one: would I rather my kid have autism or measles? And you know what? Its a completely stupid argument. Measles kills kids. No, not often, but often enough. It can lead to severe mental retardation/intellectual disability, and so can autism. But measles is preventable. So far, I'm not convinced that autism is, or at least we don't know how to prevent it. i can prevent measles with 99% accuracy.

My good friend from down the street is in Richmond today. In fact, she's been there all week. On the first day of school, we went out for chai, and it was a good thing- as I was dropping her off at her house, the school called to have her pick up one of her boys. By that evening, they were once again in fear of losing him- after ten seizures. And as far as they can tell, the only reason was he got a little fever.

I'm worried about her, and him. I'm worried about him, because hey, he's a little guy with lots of issues including seizures, and seizures are no joke. I worry about her sitting by him every time he gets a little cold, or a sore throat, or anything that might put his temp up a little, because it could trigger seizures, and they could lose him.

His brothers are also severely disabled, and have autism on top of the other issues of severe hydrocephalus they all share. This lady takes care of them, makes sure they get their food, they keep clean, they get time to play and move around and practice their walking and their swallowing. She is part of teaching them to feed themselves and communicate with modified signs. They laugh, they cry, they squeal, and the little guy even says hi.

And I come back to stupid arguments. Would she rather they be as they are, or possibly dead? And I can tell you what I would pick. I love those boys, as they are. She faces the possibility of losing one- any one of the three- at every moment. She works hard to keep them not only alive, but happy, growing, and learning. She is not interested in them suffering through measles on top of everything else, or risking death from it. Or seizures.

Stimey had a friend lose a son recently. I don't know what happened. But it wrenches me to even think about the possibilities of pain that Stimey's friend must be going through. It is unimaginable. May I never, never, never know what that feels like.

Which would I prefer, autistic or risk of dead? I'll take autistic.

Eleanor: There is everything in life, but hope.
Henry: We're both alive. And for all I know, that's what hope is.
-James Goldman, The Lion In Winter

Wednesday, September 07, 2011

Farewell, Fish

I came down the stairs today to find the fish had died.

I admit he was old. And he hasn't been looking too good the last couple of days. He wasn't an exciting fish, but there is something odd about looking at the counter and not seeing him. Seeing his tank cleared out, not hearing the steady bubble of his pump... its very disheartening. He was a pretty little rosy red minnow. The oldest I had ever heard of.

I buried him with his frozen fellow-tank-fatalities in the back garden.

I think that will be it for the fish. when you live in water, you're a little too delicate for me. I prefer small and furry. Maybe a mouse. But not right now.

Right now, I think I will look sadly at the empty little tank, and remember a quiet little friend.

Tuesday, September 06, 2011

Things That Make Me Happy Today

In no particular order.

1. Joey came home grinning from ear to ear and telling me what a good day he had. Smiling and speaking right off the bus? Right on!

2. Andy taking my hand to walk home.

3. New furniture, complete with plans to have a sewing chair.

4. JoeyAndyDad's grin when handed DQ for supper.

5. Mom hugs.

6. Warm kitty snuggled in the chair with me.

7. The first nip of fall in the air.

8. Orange mums.

9. Chai with my favorite redhead.

10. The ABC catalogue.

Hope you are having a fun, lovely, happy day!

It's Miller Time.

Friday, September 02, 2011

End of Summer Blues

I find myself at the end of this summer in an emotional catch-22. I totally love my boys, and I love having them home to do fun stuff and hang out and be squished.

But I really have to be truthful sometimes: I am very ready for them to be back in school right now.

End of summer is always the apex of disastrous. The boys have been off schedule for so long, that even the artificial one of the last two weeks of summer is a joke to them, and they are totally helter-skelter. Usually I would be going in to teach twice a week, getting a breath, but the earthquake and hurricane canceled classes. Good for not having to find someone to watch two totally disregulated boys for a couple hours twice a week. Bad for no break from two totally disregulated boys in perpetual Witching Hour for two weeks.

Add to that Andy's new self-expression limit-pressing: smartmouth eye-roller. And Joey's usual echoing of phrases and sounds that may be extremely annoying, like phrases from Annoying Orange or pretending to cry like a baby.

It's a horrible, wrenching, tearing feeling to love your kids so much, and be so very ready for them to go do their own thing, and let you enjoy a moment of quiet. Which will then become an hour of quiet. And by the end of Day One, I will be nearly in tears missing them. Today, I was in tears wishing they would just behave like kids who had just been taken to an awesome pizza lunch, and not two hooligans who had no sense of gratitude in their bodies.

And I'd like to not feel guilty about wishing school would just go ahead and start already, so they can get into their routines and get regulated again.

Thursday, September 01, 2011

Andy's Open House

Well, that went... weird.

There is a standard format for open house around here. You show up sometime in the time slot provided (1-3 or 5-7 for Andy's school), stand in line to get the name of your kid's teacher, roam about until you find their classroom, dump the large bag of school supplies on the desk with your kid's name, shake hands with the teacher, convey vital info (my kid needs a lot of structure! or my kid is on these meds! that sort of thing), and leave. It takes about half an hour, with the wandering and line waiting and sometimes you have to wait a little to shake the teacher's hand.

So we had a little trouble deciding on lunch, and Joey was at Grandma's, so we decided to just go over, do the open house thing, and then do the lunch thing.

We walked into a big, formalized program with, like, sessions and stuff. Apparently, someone thought parents had a couple hours to kill the week before school started, and should spend all of it at the orientation session. Only they didn't tell any of the parents there was going to be this formal session format thing, and parents were wandering in whenever, just like usual. And they didn't tell the secretaries, who at first set up to do the lines for getting the parents informed of teacher names, then suddenly had to just rush everyone in so the principal could do the keynote thing. I'm not sure how much warning the teachers had, but I got the distinct feeling it wasn't much.

Consequently, very weird. No way to have that quick, private two minutes to tell the teacher your kid has some minor little difficulty that just needs to be known so it won't be a problem. No time to personally connect with the teacher, because they ar busy giving a little presentation to everybody. It was really, really weird.

If people had known it was going to be a two-hour formal-session event, it would have been fine. Even awesome. Say your info once or twice, instead of repeating it with every handshake or expecting the parents to read anything. Have a little tour of the school and the specials classrooms. Break up the crowd so you know you on;y have a certain number in an area at any one time, avoiding bottlenecks. But they didn't bother to tell anybody, so we had us who really needed to skedaddle and feed our kid. We had lost, confused parents wandering in the classroom at the end of the little presentation, looking embarrassed and feeling uncomfortable as they disrupted the little session they didn't know they were supposed to be attending. It was really, really bad.

The teacher seems OK, and I have heard good things about the class (this is the teacher's seventh year at our school, an all seven years have been at this level) and the pod (the group of 2-4 teachers who divide the students up into smaller math and reading groups in a few weeks- allows more individualization in smaller groups, as you can have each teacher specialize in certain levels of a skill, instead of everybody trying to do the whole spectrum of skill sets. In a given set of time, a teacher can do what? two groups? three? And instead of having a kid have a choice of three levels, with a pod of 3 the child can now be in any of 6-9 levels!). It is a regular-ed setting, which is a new world for us, as Andy has been in inclusion classrooms the last two years. It is a larger class than he is used to, so I don't know how that will play out- it seemed to be a full set of 28.

The teacher seemed well organized, and is going to have a website for us to check on homework things and projects, and any supplies or volunteers needed or wanted. She is going to do homework packets, so we can better work around our sports and therapy schedules, totally awesome. The first week will be read for ten minutes and then write two sentences, which I think is a great thing- for one, we know what is coming for the first week, and for two, Andy can use refreshment and reinforcement in writing (sorry, folks expecting my boys to write letters to them this summer- it didn't happen because I suck). So all in all, things are looking just groovy on the Andy front.

Tomorrow: rest and relaxation. School's coming.

Wednesday, August 31, 2011

Good Vibrations

Joey's school open house was this afternoon- our first back-to-school event! And it wasn't an IEP meeting! Hooray!

I got to meet the new team. Apparently after some scrambling and threats to force the principal to call me and explain why certain things were or were not happening, Joey's education team is nicely settled in 4 classrooms grouped at the end of one hall, so everybody can chat and pass him around as needed. Everybody also seems to understand the plan is to go with the flow, and if something happens that isn't groovy, its time to chat it up and work it out. Awesome.

Joey gets to start off the year in a good chunk of self-contained class to keep him in small groups, where he seems to work best. He will, however, have a regular class homeroom and a regular class math group to start. Not inclusion- regular. He imitates inappropriate behaviors too readily, so they are trying to re-incorporate him with his old upper-group regular-ed buddies. His math friends are used to him, he's used to them, and he'll have a lifeguard if he runs into trouble, plus the other three classrooms nearby are full of friends, both peer and adult, to help. We're hoping this gives Joey some sense of safety, or at least comfort, so he can function. Also, boredom is not our friend. He needs very advanced math, or we risk a mess.

The plan is to slowly move him into regular-class reading groups as well, but to keep him in smaller-setting situations for what would normally be large group in a regular-ed class (ie, science, social studies, shared reading, writing, etc). He will also be with his regular ed class for "specials" (art, music, library, computer, health, phys ed) and recess, to keep those kids more used to him, to keep him more used to them, and to keep him away from behaviors and issues of the special needs classrooms that were feeding problem fires. His lifeguard will be present in all of these regular-ed settings. At least that's my current understanding, and not having one in these situations would be perilous- we still have the threat of bolting to contend with, after all.

So we seem to all be on board, ready to go, and we exchanged email and cell contact info.

I returned later with Joey's school supplies, and had another solid chat with the self-contained teacher. We have a better personality fit than last year's teacher, which makes it easier to exchange info; also, she's worked with Joey before, so could understand more of what I was trying to communicate. All good. Yay!

Am I still nervous? Oh, yeah. Last year was a total disaster. I didn't know how anxious I was until i started driving away at least, and realized I was shaking, and started to cry. I think it's going to be a much better year, with a more solidly prepared team. But it is still school. And one never knows.

Tomorrow: Andy's open house. Erp.

Have a Kid Heading to School? Go Read This Stimey Post.

Hey, this is supposed to be a resource blog. This post rocks for prepping for school. Adding it to the resource list.

Friday, August 26, 2011

To Marty's Playland and the Trimper Family

Dear Folks Who Buy the Prizes For the Antique Cranes:

Please take a long, close look at this photo. See the baby in the background? That's me. I'm going to be... a lot older in December. I'm in Marty's in this photo because my parents thought it was fun to show those antique cranes. After all, they had played them as kids, as had their own parents. It was important to have their kids come to Marty's, to see and play those cranes.

Take a closer look. See how the bottom is filled with sand, and the prizes are stuck in it? Pretty cool, huh? And when I got a little older, the bottom was filled with tiny little seashells. There was little more exciting to me than when the claw scooped up a prize- or even better, a tiny seashell.

Now take a look at this one. this is my own son, overjoyed because the claw picked up a spring thing. It didn't pick something up every time, but it was totally awesome when it did, and it did more times than not. We ended up with a lovely bag of little plastic cars, rings, poppers, aliens, erasers, baseball cards, witchfingers... small prizes that not only kept us coming back to the cranes, but to Marty's Playland. Not only were we in the habit of spending long happy afternoons in front of the cranes, but also the skeeball, the coin-pushers, the roll-ball poker machines...

That picture is, unfortunately, two years old. Last year, you started putting in prizes that the claw had no chance of picking up. This year, you added to the insult by raising the price to 25 cents.

I don't mind the price change. I'm sure they started off as a penny, when my grandparents were loving them. They have been 10 cents as long as I can remember (we always called them the "10-cent cranes"). Keeping up antique machines is likely to be expensive, and the prices of the prizes- well, you could tell they were going up. Those springs are now retailed from Oriental Traditng Company for 2 cents. A little popper thing, the prize my other child liked most, now retails from Oriental Trading Company for a whole .04 cents (yes, I am aware other places sell them cheaper).

I do mind the prize change.

See, part of the charm of the cranes was going out with a bag full of those little toys. If you managed to snag a pen- the sign of a true crane master- you got a bigger prize. When I was younger, the prizes where indeed bigger- in size. Not in price. Blow-mold plastic was cheaper then. Getting a little acryllic animal (imitating those fine little glass ones) was a treasure to keep. Oh, yes, I still have them- from when I was seven.

How important are those cranes to your business? I don't know. But I can tell you that with the change, when we had a chance over our week stay to go to an arcade again, we didn't go to Marty's. We went a block down from our apartment, and had a ball, and got a lot more tickets that got us a lot more prizes. Any other year, we would have gone to Marty's. Every other year, we HAVE gone to Marty's.

And next year? We are considering if there are places other than Ocean City to take our vacation.

All for 2 cents. Seem strange? That's what happens when traditions are snapped.

Tuesday, August 23, 2011


Joey and Andy have been having a Pinball Day. As in, they have been bouncing about like pinballs. Eep.

We pulled up to a gas station, and waited for the pump to fill the tank. Suddenly, the car starts bouncing about as if... well, as if little boys decided to bounce energetically in the back.

"What was that?" I turned sharply about, my own nerves already well-frayed. However, both boys and Evan were firmly strapped in their seats.

I hopped out and took a look, and there was a sheepish-looking man with his hand on my car. Why is he rocking me car? I thought. That's just weird. The car in front of us moved, so I moved up, and pumped the gas, and headed out to the post office. Joey was really upset, especially since he was already off-kilter, and started talking constantly and loudly about things like being shaken and other indications that he was pretty scared.

That's when I got a text from JoeyAndyDad. You OK?

OK? We're fine, why?

Earthquake. 5.8, centered in Mineral.

Wowzers kazowzers. That's only about 30 miles southwest of us. We headed back to Mom's house to check on it, but nothing was even out of place.

My house? Evan says some of the pictures upstairs are slightly askew. And that's it.

All around us? People talking about stuff on the floor, chimneys falling, awnings coming down.

But folks, we're fine. A litle shaken, not stirred. Next adventure: Irene. Due on Saturday. I'll keep you posted.

Sunday, August 21, 2011

Beach. It rocks.