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!

Scatter

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...

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?"
"No."
Pause.
"OK. Joey, would you like to say grace?"
"YES!"
"Ok! Go ahead!"
"GRACE!"

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.

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!

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?

Round 4

Ding.

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.

Happy Birthday, Beau

Wishing you joy.

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....

Today.

Seriously? Un. Happy.

Another place to peek

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

Halloween at our house

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

October Blooms

Take a peek in my garden gate.

Why, Yes, I Do....

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

Happy Birthday JoeyAndyDad!!!!

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

Happy Birthday, my love.

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!!!!

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.

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.

Presents

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.

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...
Joey: Evan, EMAIL THE TOOTH FAIRY!