Life With Joey

A Chord Once Struck

2012-01-16T22:06:00.006-05:00

I remember That Meeting.

We were in a preschool classroom, and the topic was ESY. We had covered for the school the year before by placing Joey basically in daycare, and we knew it didn't really work very well. We came with the idea that we would be discussing Joey's issues of the year and how they might be addressed, and the need for him to have year-round service. We knew every educational study done supported autistic students having year-round services. We knew the government offices published guidelines that recommended year-round service for autistic kids. We knew the doctor, the speech therapist, and the OT were recommending summer services. He needed structure. He needed focus. He needed school.

It wasn't an easy thing for us to give him up, but we knew that everything was pointing to this being good for him, so we would lose a lot less time in the fall. Time was, after all, the enemy. We had none to waste if we wanted the best possible outcome in the long run. We came in to the meeting, sat in the half-sized chairs around the low table, and the meeting began.

And the school OT pulled out a color print-out of the state guidelines for ESY, and started noting how Joey met none of the criteria, mostly because he wasn't showing regression.

We were absolutely blindsided. Do you know what color copies cost? Here was a professional, going against everything we had, everything that we had ever heard of... and though regression was not the "only criteria", it seemed to be the elephant on the page.

Hindsight makes that meeting even worse, because I know now that Joey did, in fact, meet the criteria on that page. We were just too ignorant at the time, and not quick enough, to be able to throw it back in her face.

We have all had That Meeting. The one where the people who are supposed to be helping you actively sabotage you, and for no good reason you can see. Malice? I still wonder if there wasn't malice in our meeting, for that OT had already proved to be incompetent, I had already parked my butt in her boss' office to note it. I still remember going to a private OT and discussing things the school OT had said and done (and not done), and the utter shock as the private OT said, "if what you are telling me is true, that is a major breach of ethics! Your OT could lose [thei]r license!" and knowing that reporting the OT was going to do no good. We had already tried that route.

But sometimes it isn't malice- or at least, not conscious malice. Often, it is ignorance that fuels That Meeting. We expect professionals working with our kids to be... well, professional. The ignorance can be a shock. It bowls you over and stomps you into the dust. Did that person just say that? Really? They know better! And they are in a position that leaves us caught in a game of politics, or policy, or whatever, leaving us powerless to get around this person. We find ourselves at a roadblock, often unexpected, and have to think quick to come up with alternative paths. When someone actively sabotages you and your child, it can be an exercise in futility, frustration, and ultimately, creative problem-solving. How do I get around this person to make sure my child gets their needs met?

For us, the answer was lots of OT camps and speech therapy camps that we had to pay for ourselves. There wasn't time to go o Due Process- summer was upon us, and Due Process can take years. It also takes money. We now needed that money to pay for therapies. OT camp isn't like Summer Camp. It costs a lot more. But we- and Joey- were fortunate. We could take that option, even though it wasn't really enough.

The next year, the regression from summer couldn't be ignored. The stress couldn't be ignored. The slamming doors could not be ignored. We got ESY.

But we all know That Meeting. I don't think I have met a special needs family who hasn't had That Meeting. Unfortunately, most of the families I know have had several. We've been pretty lucky in avoiding That Meeting, but we have seen ignorance from plenty of people who should know better- whose JOB is to know better. What is scary is when some parents have That Meeting and it is the life of the child at stake. Educational issues, I can come up with Plan B, C, and D. For families facing serious medical issues, That Meeting is catastrophic. It is a life or death moment.

That is why I am glad to see 18,000 signatures on a petition against That Meeting. When you know you are not alone, and we take a stand against That Meeting in its most terrible form; that is the power of letting someone know the catastrophe is upon you. We've been there, and we are, as a community, saying: No More. Stop the ignorance. If you are a professional, act like one. Don't be the ignorant obstacle at That Meeting. Do. Your. Job. And do it in a professional, appropriate manner.

Go Team Amelia. Here we stand.

The Fight for Amelia

2012-01-15T16:17:00.003-05:00

In my last post, I noted the post where Amelia Rivera's parents were told by a doctor that Amelia did not have a right to live because she is "mentally retarded" and "brain damaged." I was right. I didn't get any sleep that night. The thought that there are people- professionals who are supposed to be familiar with disabilities and the rights of people with disabilities- is terrifying.

Note I didn't say "surprising." Unfortunately, we know better. We know the ignorance remains, even in people who should know better. Who are trained to know better. Who we trust to know better. Even people who say they know better.

That is why the fight for Amelia is so important. There is no excuse for anyone to deny someone the right to live, especially by denying them appropriate medical care and service. Professionals of a children's hospital know better. If they don't, the hospital should take measures to find out why, and make sure everyone on their staff knows better, and believes that all people are due their basic rights.

Not just the doctors, nurses, and social workers, either. Everyone. The administrators, the assistants, the janitorial staff, the cafeteria staff, the volunteers, the secretaries... everyone.

Disability is no excuse for denying a person- no matter their age or your assumptions about their "quality of life"- the right to live. People with disabilities are already actively targeted for bullying and crime; they don't need to be targeted in a hospital, when they are trying to get medical care.

This is important. Today, it is Amelia. Tomorrow, it could be Joey. Or Andy. Or you.

To see a list of more posts written for Amelia and disability rights- such as the right to LIVE- check out this site.

And please: sign the petition!

Nightmares

2012-01-13T18:01:00.003-05:00

I am not likely to get much sleep tonight. I read a blog entry about a child denied a life-saving kidney transplant- from a family donor- because she is "mentally retarded" and "brain damaged."

That is a nightmare I have all too often: that Joey might be denied medical care because someone deems him to have "low quality of life" because he is autistic. It is a very real and near fear. After all, we have to fight- often fight hard- for people to respect his right to an education. We had insurance that denied his right to certain therapies (fortunately, JoeyAndyDad got a new job with new insurance!). In other words, we fight every day because there are people that consider Joey to be less than human, a waste of resources, a drain on the "system." Because he has a disability, there really are people in this world who consider him of less worth than... well, themselves.

I spent the afternoon in Joey's class today. It is always an experience that blends hope, amazement, pride, joy, love, and depression in measures, and comes out as something that makes me think hard about what life means, and its amazing value. I am not at liberty to divulge the variety of issues and the range of stories behind the lives of Joey's classmates, but I can tell you that each and every one of them is an incredible human being, doing things that are nothing short of miraculous. And many of the stories are, at the same time, desperately heartbreaking. And some are all the more heartbreaking because there are people who think these kids are, basically, junk to be tossed away. That anyone could look at any of these children and not see how utterly amazing they are in the face of their challenges and because of their amazing talents is just... mind-boggling. And incredibly sad. It even makes me angry to know what some of these kids go through every day, because there are people in this world who think they have no value.

That someone might deny any one of these children the right to live is something we should all actively, aggressively, and positively fight, every day, every minute. Such denial is a shameful manifestation of evil in this world. It is up to us to fight it with everything we have.

We live in a country that recognizes everyone's right to life, liberty, and the pursuit of happiness. Nothing in the Bill of Rights says we have to take an IQ test to have those rights.

All taken care of

2012-01-11T15:06:00.002-05:00

One of the strangest things people say to me when we talk about Joey is "God has a special place for you in heaven!" or the now-more-common, "God will reward you!" No, really, That's just... odd to me.

Now, I know some folks get very offended by such statements. I don't. I understand that the person means to be friendly, comforting, and sympathetic to my role as a parent of a child with special needs. Sometimes it is hard to have a conversation with someone, and hear about hard days, and know what to say to a world that is totally outside your experience as a person or a parent.

I used to say "thank you" and move on. Now I have a new answer.

"He already has! He's given me my boys!" And my life. And my husband. And my mom. And my friends. And...

People seriously need to get into the groove of thinking about my kids as the lovely, beautiful people they are, as the precious gifts they are- and not just to me, but to the whole world. Each and every one of us- we're gifts. We have the potential to do so much, each and every one. It is up to us to do our best to show our gratitude by helping the world be the wonderful, beautiful place it can be.

So that place in heaven? All taken care of. Right here, right now. Thank you.

A Growing Problem: Curbing Anger

2012-01-05T21:34:00.004-05:00

Joey is getting big. Like, big. He's nine and a half, and he's going to be a big man- even if I get his weight under control. We are starting to really understand the issues that come with being the parent of an autistic young man. For one, if he loses control, he could really hurt somebody. Like me. Or like Andy.

I know I often leave off the blacker side of living with Joey, and trying to help him, but I am realizing that many more of us are dealing with issues of temper and anger than perhaps we want to admit. It is a challenge to teach any child about controlling frustration and expressing anger in ways that are constructive rather than destructive. Trying to teach one that has issues with communication in the first place? Then add a daub of impulsiveness to it? Now add some not-so-healthy depression? Holy. Freaking. Cow.

Honestly, I am finding myself at a loss. Trying to discuss the issue with Joey is a super challenge that I am finding myself struggling to meet. Joey does not cope with criticism well, and starting the spiral into "I'm a bully! I'll never...!" makes it that much harder to try to get him to understand; and until I can get him to understand, I'm not sure how I can get him to help me understand.

I know that didn't make much sense. What are we trying to understand?

Both of my kids use communication system we call Engine Run to help others understand how they are feeling, to get in tune with their own regulation issues, and learn to self-regulate and manage. Basically, you think of your emotional state and body as a car. If your engine runs too high, you can crash or go flying off a cliff, or get into a speed-related accident. Not good. If your engine runs too low, you block up traffic, people honk at you, and you don't get where you need to go. You want to get your engine running just right. Then, the program works on teaching kids what kinds of sensory integrative activities and strategies help them for when they are running too high or too low.

My problem is when Joey goes from running a little on the high side to running white-hot HOLY MOLY and crashes off the cliff, what do I do? And how do I prevent it from happening again? Or at prevent him from hurting himself or anyone else? This is a question not only of what to do in the white-hot moment (restraint), but also prevention (de-escalation).

The other day, we came home and he was upset with me. I can't even tell you about what now, probably I had to take a toy or a stick from him. What I remember is standing at the door of my house, trying to turn the key, and getting pummeled. Absolutely pummeled. I had enough sense to get his arms and keep him from running off down the street, getting the door open, and screaming for help from JoeyAndyDad. Being chubby likely saved me from having major damage to my arm, he was slamming me with his fists so hard. I'm surprised none of the neighbors called the police. We got him inside and into his room. We got Andy inside and checked on him, because talk about scary! And of course, ten minutes later, Joey had another melt because he realized what he had done, and that I was hurt. All I could do was hug him, and get him through another round of "I'm a horrible boy!", which can only be countered with assurances otherwise, and lots of assurances of love.

But I knew right then, I was in trouble. Deep trouble.

I have had to ban Mario Brothers from the house for a while. Both boys get so over-excited that it becomes dangerous. They play away fine, and then some small issue rears its ugly head, and danger strikes. Someone gets hit. Someone gets kicked. Joey flew at Andy an bit him so hard on the shoulder he left a bruise- I'm surprised he didn't draw blood. It was like watching a tiger attack, and just as lightning-fast... and terrifying. And horrible. How does one get across the seriousness of this behavior, and the need for it to end RIGHT NOW? Getting him to calm down was my first response, but nothing I could think of seemed adequate. Sure, I banned the game. Sure, I shut down the Wii, hid the DS, sent him to his room, brought him down for a talk. Andy was already apparently past the whole thing by the time Joey was calm enough to speak reasonably. But he could have been seriously hurt.

It's a growing problem. And as he grows, and we stare puberty in the face, I fear this isn't going to get better any time soon... unless I act now. And even then, it may not be enough.

A Boy and his Santa

2011-12-26T19:14:00.000-05:00

Merry Christmas.

Merry Christmas!

2011-12-23T09:07:00.001-05:00

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

I bet he'll be the best Santa ever.

No, No, Stimey...

2011-12-17T23:05:00.001-05:00

THIS is a Christmas Tree:

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

Being Social

2011-12-13T12:40:00.003-05:00

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

2011-12-09T08:02:00.001-05:00

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

2011-11-27T22:53:00.002-05:00

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

2011-11-23T22:43:00.002-05:00

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

2011-11-22T00:01:00.002-05:00

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

2011-11-17T11:32:00.003-05:00

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

2011-11-12T00:52:00.002-05:00

Wishing you joy.

School Pictures

2011-11-10T16:48:00.002-05:00

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

2011-11-06T09:41:00.000-05:00

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

Halloween at our house

2011-11-04T11:37:00.003-04:00

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

October Blooms

2011-11-01T20:57:00.000-04:00

Take a peek in my garden gate.

Why, Yes, I Do....

2011-10-29T21:01:00.003-04:00

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

Happy Birthday JoeyAndyDad!!!!

2011-10-27T15:30:00.002-04:00

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

Happy Birthday, my love.

Missing: Robbie Wood Jr.

2011-10-25T19:38:00.003-04:00

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

2011-10-20T08:33:00.002-04:00

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

2011-10-20T08:22:00.005-04:00

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

2011-10-18T22:08:00.003-04:00

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.

2011-10-18T21:10:00.002-04:00

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

2011-10-12T08:22:00.007-04:00

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

2011-10-10T22:47:00.001-04:00

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!

Wordless Wednesday: Pumpkin Days

2011-10-05T22:23:00.003-04:00

Updates from us

2011-10-05T07:50:00.003-04:00

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.

And now for a completely different child...

2011-09-27T20:55:00.002-04:00

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.

Standards of Learning, Standards of Testing, And NonStandard Children

2011-09-20T15:22:00.004-04:00

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.

Bus Stop Conversations: Babysitters

2011-09-13T21:38:00.003-04:00

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.

Tired Old Arguments

2011-09-09T22:01:00.002-04:00

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

Farewell, Fish

2011-09-07T18:36:00.002-04:00

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.

Things That Make Me Happy Today

2011-09-06T18:44:00.002-04:00

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.

2011-09-06T08:13:00.000-04:00

End of Summer Blues

2011-09-02T20:21:00.002-04:00

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.

Andy's Open House

2011-09-01T20:39:00.003-04:00

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.

Good Vibrations

2011-08-31T23:22:00.002-04:00

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.

2011-08-31T00:11:00.001-04:00

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

To Marty's Playland and the Trimper Family

2011-08-26T10:59:00.004-04:00

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.

Earthquake!

2011-08-23T15:42:00.002-04:00

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.

Beach. It rocks.

2011-08-21T21:43:00.003-04:00

I know, I suck.

2011-08-09T23:00:00.003-04:00

Why haven't I been posting much?

I have Andy home now. No camp this week.
We just a new book out, and I have been running about trying to sell it and get copies into the hands of reviewers and such.
Pot Luck Magazine is finally ready to be laid out, and I now have it done, except I need to get the main file and the cover to integrate, and it won't.
I had to grade finals and report grades. Then I had to start formatting and tweaking my fall classes. And I have to have it done now, because we'll be at the beach next week.
We'll be at the beach next week, so I have get everything settled and ready to go, all hands on deck. Fortunately, we have extra hands this year, but it still takes a lot of prep to take the boys on a long trip.
We got some payments on our genealogy contract that had to be processed.
My brain is fried.

I am planning on consuming a good amount of beer next week. Or at least dreaming of consuming beer next week. The apartment doesn't have high-speed internet access, so there may be a few posts, but I'm not guaranteeing anything. I'll be on vacation, after all.

New Design: Choose Kindness

2011-08-03T19:03:00.003-04:00

Our latest design! Woo-hoo! I am also adding some of the new products to my older sections.

Joey See, Joey Do

2011-08-02T20:29:00.003-04:00

I now have a mortal enemy. And his name is Annoying Orange.

I refuse to link to any of the videos of this nasty, inappropriate critter. Take my word for it. The video character is very aptly named. Unfortunately, he is also very striking and memorable, and thus very striking and memorable to imitate, despite his behavior being, well, annoying. And insulting. And offensive. And ugly.

Some of Joey's friends are very into Annoying Orange. They, and many of their parents, think it is funny. They also apparently think it is OK material for their 7-to-10- year-olds to be watching. I am hoping for the best by assuming they use it to discuss why the orange is annoying and so why you want to avoid his behavior. But alas, the majority of children we know who watch this trash are echolalic and imitative. Children such as... Joey.

So the other day, while they were eating snacks in the cafeteria, Joey thought it would be funny to throw his lunchbag at his teacher's face, in a "remake of Annoying Orange." He and his buddy D thought it terribly funny, especially when she gasped- a sound Joey has been finding hilarious this week. Needless to say, the teacher was not pleased. And Joey realized quickly that he had done something that had made her not pleased. The spiral spun to disaster from there.

The good news is that people who needed a good look at what our life has been like for the past year got a spectacularly dramatic view of it, and can now better work on helping improve it.

The other good news is Annoying Orange is now officially banned from my house. In fact, we may be watching a lot of Little Bear, Franklin, and Peep for a while. I may try to sneak in a Mr. Rogers. You know, some positive behavior models. I don't get to choose who he imitates, but I can do my best to present him with all the good models I can lay hands on.

And personally, I like Quack the Duck much better. He at least says "please".

Up up and away!

2011-07-26T11:43:00.003-04:00

There is absolutely, positively no doubt that I have two happy boys this summer. And I cannot tell you how wonderful it is to be able to type that sentence, and spread it to everyone who reads here, knowing how many of you can truly appreciate what that sentence really and truly means. Even knowing those of you who can only get a faint echo of what it means, you can get the vibe. May it help the tides of your own lives.

How awesome is it to sit in a restaurant, one that Joey picked out- voluntarily picked out, all by himself- and have to speak to him about talking too much? Right after school? Or have to scold him a little for playing too rough with his uncle Evan. Do you understand what it means that he is playing with another human being? At all? I have to be ready for Friday, because we are going to be baking up a storm... because when I asked Joey what he wants to do, he says, "Let's bake cake and cookies!" He wants to do something- he can vocalize it- he really gets excited about it!

Yes, we still have meltdowns. Yes, I had to pull him upstairs a couple of time in the last week or so to discuss the "I want to kill myself" assertions and how to deal with frustration. He still has no patience whatsoever. Ups means there will be downs. BUt I'll take the massive ups we're having. Yes, and twice on Sundays, with every down I've had.

Andy is loving himself some camp, too. He's decided he likes art better than scootering, though I think there are two main reasons for that outside of his love of art: his little ladyfriend, and being teased because his scooter isn't one of the shiny new kind. He decided he likes his scooter, but no so much the other boys who go scootering at camp. Art is more fun because the company is more fun. I know this, because we've had several talks about it. I was worried he wouldn't want his scooter after being teased about it, but he loves his scooter. He won it at the auction and painted it himself, after all. That's my boy.

So here's to summer. May yours be as gloriously wonderful as mine!

The Big Picture

2011-07-18T16:29:00.001-04:00

I often think Joey's life is kind of like this- waiting for us to see the big picture.

At the Aquarium

2011-07-17T22:15:00.008-04:00

We had our Big Summer Trip today: the Aquarium in Baltimore! This is always a big adventure, because it is a long drive, then a trip through dark, crowded places, then an exhausting drive home. In the past, Joey has had trouble dealing with the dark, with the crowds, with the fish, and with the whole overwhelming experience. But this year, we have the return of Happy Joey- so we decided to give it a try.

Joey was so excited to be going to the aquarium, he was up at 2 am, singing to me in bed. At 5 am, he was dressed and informing us (who were still in bed) that it was time to go to the aquarium. Yes, he was a little excited.

We left about 6, because we wanted to be there when it opened to mitigate the crowds. Also, we were technically going with Team Stimey, though I got to see Stimey for all of... ten minutes? And I think we had an opportunity to say about three sentences to each other. The Aquarium is an all-hand-on-deck proposition, and all hands were busy.

Both boys were very, very happy once we arrived. They were excited to see fish, they were excited to sharks, they were excited to see turtles. Happy happy boys. That is the way it should be. We took the usual route through the sharks, up through the different waterways to the rainforest and coral reef. We were hoping to make it through the Australia exhibit this time, but no dice, we wore out. At least Joey as very happy through the whole thing, and really took time to look at the fish, not just glance at the cases and cope with the dark and crowd.

We tried at first to stick together, but JoeyAndyDad and I split up at last so Joey could take some breaks and Andy could go ahead and look at stuff and not wait around. Team Stimey came in behind us and we all met up at the top of the Coral Reef. Andy liked to get Joey's attention by grabbing his head or neck, and physically pointing Joey's face where to look. It was effective.

It was wonderful to see Joey actually looking at the fish, not just glancing at them. He would actually watch each case for a while, talking about the fish and animals he saw, noting that fish need to live in water (and couldn't come to his pond...) He was especially entranced by the octopus (no photography allowed of the octopus, but he was AWESOME) and the divers feeding the fish in the coral reef. He also liked to point out turtles everywhere. He was so interested, I am going to fish out some of the book I have bought him about fish and reefs and see if he will look at them.

Andy liked the rainforest and the exhibits about the Amazon basin. There were alligators, rays, and lots of frogs. Even he wore out at last, though he wouldn't admit it- he wanted to go see the jellyfish and hang out more with Team Stimey (Andy loves him some Sam!)

Andy was especially fond of the rainforest itself. HE saw it three times- once with Dad, once showing Joey to get him caught up, and one more time with Team Stimey, to get them caught up. He's fond of these open aviary type exhibits, seeing the birds fly and everything with no cage separating him from them. He also got to see a sloth and several nice tortoises. Joey was more interested in the parrots.

Andy even got to feed some of the birds- one of the staff gave him some mealworms to put out, and the birds came right up to get them. He was as happy to be able to actually touch mealworms as he was to have the birds come eat them. He saw the Wild Kratts feeding mealworms to aardvarks and was really interested in them, so getting to hold real ones was awesome.

The boys liked the frog exhibits, too. For some reason, Andy was calling the yellow tree frogs "ninja frogs", but apparently this added to the charm. Andy also wanted to show Team Stimey the frogs, but mostly ended up fascinated by Sam by the time we got back to them.

Though I didn't get to see them as much as I would have liked, Team Stimey was awesome as ever. We had lunch at the (very expensive) cafe before attempting the coral reef. It was a nice place, because you could see the whole harbor, and watch the dragon-shaped paddle boats skimming about. Apparently there was also a "ghost boat" in the water, but I didn't see it.

Finally, it was time to hit the reef. It was feeding time, so there was a diver there talking about caring for the reef and the fish. As I was leading Joey around to see him, a wail went up- alarm! alert! Danger, Mom Robinson!

The problem was that Joey had dropped his totem green sparkly pencil into the water, and couldn't reach it. This was a calamity on several levels- Joey's totems keep him calm, so we really needed the pencil; and we were afraid the fish might try to eat it (or at least the eraser) and get hurt. Andy dashed over to the diver for help; and he kindly thanked us for letting them know so they could get it out of the water, and he sent one of the divers ho was feeding fish to retrieve it for us.

We got to see the diver swim over and rescue the pencil, very exciting. She handed it to Joey, who was ecstatic and thanked her enthusiastically. He then was very excited to see her feeding fish a few minutes later as we descended into the reef.

And while the boys were bouncing about, excited about the diver and the fish and the pencil and everything, Andy lost a flipflop. Yep, it fell right between the grate and the glass of the tank, and landed just about the lighted shark silhouettes- and out of reach. I got a staff member, who kindly went to get someone with a pole. He came back to stand with me while I waited, and apologize for the wait (I must have looked as tired and exasperated as I felt), and tried to make me feel better.

"Oh, don't worry, M'am; a few minutes ago, someone's kid dropped a pencil in the tank and they had to send a diver over..."

I had to tell him that was us. I think he got his laugh for the day.

In the end, the flipflop was retrieved, we went to see the dolphins, and all was well with the world. We were worn out, so we hit the gift shop and headed home. But hey, never a dull moment.

Boys in the Summertime

2011-07-16T22:08:00.007-04:00

Boys in the aviary at the Richmond Zoo.

Boys and tigers at the Richmond Zoo.

Feeding the giraffes.

Joey discovers the budgies.

Andy thinks budgies rock, too.

Discovering our inner Storm Trooper.

Joey loves riding animals.

Andy decides horses are OK.

A dream for Joey: meeting Obi-Wan Kenobi.

Andy's dream come true: meeting Captain Rex!

Joey still loves barrel rides.

Andy on the slides.

Sparklers!

The boys really liked holding them, and no one got burned!

Andy discovers a snakeskin on our nature walk.

Joey even liked the nature walk. This was unusual; he's usually not a fan of walking around at Grandma's and just looking at stuff. He especially liked toadstools.

Andy finally dives off the board at the pool.

Checking out tractors at the Caroline County Fair.

The boys liked the tractors, and being allowed to climb on them.

Playing in the corn: a sensory paradise.

Joey and Andy decided riding together was awesome.

They even hopped in the same bumper car, because it's far more fun with two!

Life is good. Happy summer!

The Difference Expertise Makes

2011-07-12T23:44:00.004-04:00

Our ESY started on Monday.

ESY is "Extended School Year." These are the services Joey receives during the summer from the school system because having an 11-week break in services turned out to be a bad idea, even in the eyes of the school. When we first got ESY, it was one of the Holy Grails of Special Education here. The school personnel fought us with everything they could, and I am still convinced that preschool ESY is a Holy Grail in this system. Which is, of course, stupid. Many special needs kids require year-round schooling to retain skills. I think it would be a good idea for non-disabled kids to have year-round school to retain skills. But that's another post.

Last year, the summer was a disaster of epic proportions, leading to a school year disaster of epic proportions. Joey was anxious, depressed, wild, angry, and a general mess all year. The school personnel were not properly trained to deal with his needs, or understand his disabilities. The result was a lot of bolting, acting out, and general display of Unhappy Grumpy Anxious Depressed Joey.

Then came Monday.

We jumped up and down and stomped our feet and screamed and fussed in our way, and the school decided to put Ms. H and Ms. Macy in charge of Joey's ESY this year, and Ms. H will be managing Joey's school program come fall. Ms. H and Ms. Macy know Joey, they are well acquainted with autism and the needs of autistic students, and they are both talented educators. Does it make a difference? Oh, hell yes.

Yes, we started the first day with a bolt. We had prepped Joey for the return of his beloved Ms. H and Ms. Macy, and he was so eager to get to school- something I had not seen in a year- that he bolted down the street to get there when the bus was a little late. This morning, I made him wait at the door. He stared out of it, saying, "Bus! I am waiting for the bus. Where is the bus?" until it arrived, right on time.

And when he had gotten off the bus the last two days, I saw someone I haven't seen in a year: Happy Joey. Complete with words to tell me about his day, and who was in his class, and that they played games, and he saw "the twins and Jack-Jack" and wanted to go visit them this afternoon ("Let's go see Aunt Christina and the Twins and Jack-Jack, Mommy! After the pool!"). Happy boy telling me where he wanted to eat lunch and tidbits about his morning (he's still not good at self-narrative, but he's trying!) and missing Andy and wanting to get a shovel at the dollar store and we were going to the pool after lunch and... babble babble babble, happy babble of a happy boy.

That, my friends, is the difference a little expertise and understanding makes.

Considering experiments

2011-07-11T10:15:00.002-04:00

When Joey was very little, we tried out a gluten-free, casein-free diet. We ended up with a very hungry child, especially since his diet wasn't terribly varied to begin with.

Now that he is older, and we are experiencing an increase in behavior issues, I am considering a cut in the gluten again. The thing about cutting gluten is that if I do it right, it can't hurt him; and if he's sensitive, we should see a difference in behavior or mood, or even weight, which would be a signal to us to go more drastic. It isn't like Joey needs to be eating a ton of pasta and bread, anyway.

Our doctor, clever person that she is, made a pretty big deal about wanting the boys to eat lots of fresh foods, especially vegetables, at their last appointment. We are, of course, going to cheat and remind Joey that the doctor's orders are to eat more fresh veggies. He's been very rule-oriented lately, so this may support the effort.

In the meantime, I think I am going to be at the farmer's market more often, because fresh veggies don't keep too well, especially in summer heat. Next week is Andy's "Mythbusters Camp" so a new diet experiment should fit right in!

A Visit In The Morning

2011-07-08T00:02:00.002-04:00

My bestest girl friend and old college roommate is in town, and I am so excited I am going to get to see her in the morning, I could just go SQUEEE!!!

And I am so nervous that I can't sleep.

I haven't seen Sue in a few years. Her son is about six months younger than Andy, and she has a daughter who is a preschooler. The last time I saw her son, he was just walking. I have never seen the daughter at all.

Sue's best quality is she tells it as she sees it. She doesn't allow for excuses in facing problems. She's not afraid to tell you when she sees a problem. She's not shy about helping you fix it. If you need to brainstorm ways of coping with an issue, she's the one to call. She's awesome.

On the other hand, with our family, what one sees is all too often the tip of a mysterious iceberg. A day with Joey might look like one thing, and be something completely different. The usual ideas and fixes, or the ones that may look like they work or might be helpful, often are nothing of the sort. The strategies that work with a lot of kids only escalate the anxiety for Joey. And there is no getting around it: tomorrow is going to be a hard day for Joey. It won't be his schedule. We don't know what we are going to do when we get to Northern VA to see Sue and her kids. I suggested the Reston zoo, but apparently she took her kids to the National Zoo today, so they may be zoo-ed out. (Zoos tend to be good to take my kids, because there is flexibility but familiarity- they know what a zoo is and what to expect at one, so if I have one little guy out of sorts, the other is still entertained).

I think a great deal of this woman. She is a powerful, dynamic person of dignity, character, and high respect. What she will think of me and my guys when she finds my back-up parenting plan is to bring iTouches loaded with Angry Birds and am not afraid to use them to get us through lunch? That my way of letting Joey get comfortable is to let him be Quack or Buzz Lightyear, and play along? When she finds my best trick for getting Joey's behavior under control if he starts to melt down is to hug him instead of just putting him in time out or whatever other method people use these days? We have differed and butted heads about differences in opinion in such kinds of matters before.

So many people react to Joey in so many different ways, and to how we handle Joey. Sue has not really seen Joey or had to deal with his autism before. Though I have faith that Sue, being Sue, will not love us the less or turn away from us, I simply don't know how this will play out. It is likely to be a long day for Joey, so I have lots of extra prep to do in a few hours to mitigate and support him through it. And though I know few people really understand the energy and work that goes into such a day for us, I at least hope she'll understand, no matter what happens, that I am doing my best for my guys.

And I wouldn't miss it for the world.

Unstructured Ups and Downs

2011-07-07T00:52:00.002-04:00

I have done my best this summer to keep to a very strict schedule:

Activity-lunch-pool.

In the past, Joey was a fairly flexible little guy. As a baby, he was happy a clam until he got really hungry, and since I was pretty regular with the food, he was all good, no matter what was going on.

Then he got a little bigger, and he needed to know what was coming. So we would talk about what would be happening that day, but we could be fairly vague. "Going on an adventure" was fine, he knew something fun was coming and it didn't much matter what. As long as the food came on time- not just "eventually"- he was all good.

Then he shifted to his obsession with clocks. However, as long as he knew where he was going, who would be there, and when to go, he was good. And life rolled merrily on for school. Not so much at home.

Here, life is more fluid. That is OK when you're only awake and home for, say, four hours; but when that fluidity becomes an all-day venture, it overwhelms Joey. His anxiety from his wild school year hasn't ebbed one scunce. So to help him out, I have a very strict schedule.

Activity- lunch-pool.

Deviations result in increased anxiety, for better or for worse. Today we had a movie party with one his old classmates, and he was a bundle of nerves all day. He hs a birthday party to attend on Saturday, but kept insisting it was today. Nothing we said or did would change his view: the party was today, and it was today, and today was the party, and there is a party at D's today, and he was going to miss the party... and from there, the world started ending. Only we had discussed in detail what today would be, since rain was in the air: relax with Peep and Angry Birds, lunch with Grandma, movie party.

But it wasn't activity-lunch-pool. So all was doomed.

He was happy at lunch. He was happy with his friend here. But all the minutes around those events? That poor child worried himself into a frenzy.

On top of that, Andy is having a hard time.

We have a lot of trouble getting Andy to eat. He is very picky with his food (though we are definitely back to "picky" and not in the realm of "food aversive/neophobe" anymore, hallelujah), he has a slow-emptying stomach (so he gets full fast), and on top of that, we're having a growth spurt. That child has no reserves left. If he fail to eat, if I don't push the water and the snacks, he get terribly thin and get headaches fast. He's already sound-sensitive, so you can imagine what a headache does for that child. Screaming ball of flesh. Without much flesh.

I am in a Catch-22 world of food here. Andy needs every calorie I can pack onto him and into him. Joey, with his movement and stamina issues on top of inheriting my gloriously bad metabolism, needs fewer calories than most kids his age, and is already having weight issues. We're working on creative ways to sneak Andy food, but it isn't easy. If Andy has food, Joey wants it to. Trying to explain to them both why Andy needs food and Joey doesn't hasn't really helped. I'm sure I'll get plenty of suggestions, but trust me, we've been through most ideas and failed miserably with them all. Andy is sensitive about being "skinny" and Joey is sensitive about being "fat," That's quite enough to create a roller-coaster ride without anything else going on.

You know, I love being able to squish and snuggle those boys all day long, but I'll be glad next week went both are at summer programs, with predictability and schedule and everything that makes them more comfortable. And I can sneak a milkshake to Andy in the mornings.

Happy Fourth!

2011-07-04T21:59:00.002-04:00

Giraffes CAN Dance!

2011-07-03T00:19:00.006-04:00

Joey just finished his week of Stage Door Stars, and it was Totally. Awesome.

This is a program to help kids with communication disorders and disabilities get together and have intensive therapy for a week, under the guise of putting on a play. They have a speech therapist, occupational therapists, theater teachers, special ed teachers, art teachers... and every kid gets a "coach" assigned to them for the week.

Joey loved loved loved it. He was bit nervous the first day, and pretended to be Quack the Duck all week, but he liked it, he wants to do it again next year, and he had a lot of fun.

The play was based on the book, Giraffes Can't Dance by Giles Andreae. Joey was a rhinoceros. He was fabulous. I would show you the clips, but you can see a lot of the other kids, and some of them would prefer not to be on the internet. So you have to take my word for it, he was fabulous and his usual beautiful hammy self up there.

However, he was also his usual beat behind on the dance routines and most of the lines. We might need to stress the sign language and visual supports more in stuff like this, because I know he notices and finds it frustrating.

The kids do everything to put on the play. They make the costumes (which included a tail they had to stuff, the headbands, the necklaces, and attaching squares of fabric to their t-shirts), the props, the set- there were paper flowers, paper plate snakes, paper ants, trees to be made, stars for the backdrop, everything. They had a choreographer come help them learn to move and dance, a drama instructor and director, they had the kids do everything. Each kid had a little dance they did with one or two other kids, a section of the book to say, and several group dances. They did a great job.

Joey had two awesome coaches for the week. He got to have two because during orientation, the staff was graced with witnessing one of Joey's bolting dashes out the door. I showed them Peep and the Big Wide World on the first day and explained the whole Quack thing, and then fell right into it. They didn't even mind when he signed himself in as Quack Guyton. Apparently, they went home, checked out the website, and were right in tune to help Joey along. They were awesome.

They have a couple of one-day workshops in the fall, and we are so totally there. And next summer? Sign us up!

Summer Update On Us

2011-06-29T16:10:00.003-04:00

Summer is now in Full Swing.

Last week was Free Week 1. That means nobody had any formal anything to do. Usually I try to keep the guys super-busy, but with Joey being already out-of-sorts, I did my best to give them time to settle. We went to the Richmond Zoo, which was A.W.E.S.O.M.E. The boys got to feed giraffes, play with free-flying parakeets, and get up close and personal with free-ranging chickens and peacocks. (Friends Who Visit, the next time you come this way, I have The Perfect Place To Go).

We also spent some time at Colonial Beach, with our good buddy the Awesome Neighbor. So far, so good.

Then my business trip was upon us and Joey started freaking out a bit. Fortunately, I knew he might, so had planned closer-to-home activities and lots of pool time. Also, we have been joined by Evan. To make a long story short and sweet, we have my adopted brother here for the foreseeable future, which is A-OK with my boys, because they think Evan is awesome. He's been getting used to our routines and quirks.

Mom going away for two days is not a good thing for boys. We made it through, and here I be again.

Joey has a theater camp this week, designed for kids with communication and speech issues. He seems to be enjoying it. On Friday, the group will put on a play, and he seems happy. The only thing is, he has decided this week to be Quack instead of Joey, so I'm worried he might be a little anxious. We sign the kids in and out of the camp, and they each have their own "coach" as well as the adults running the programs. Joey has two coaches (he ran during orientation, so they decided to double-team him just in case). The coaches come out and take them in, then bring them out at the end. Yesterday, Joey signed himself in as Quack. Today, the coaches bid him goodbye, saying "See you tomorrow, Quack!" Hmmm...

Andy has been having "Nature Camp" at Grandma's while Joey is at theater camp. Andy's been very into the Wild Kratts, so he seemed keen to be into nature stuff. I thought we'd be doing some wading in teh river, but he hasn't been keen on going into the woods. We had a nice nature walk on Monday, and yesterday Grandma found an awesome chemistry set so we ran some simple experiments. Today we skipped it in favor of picking out fireworks for the Fourth. He seems happy, though.

After camp, we have lunch and then go to the pool. I decided to have this routine for the summer, so that Joey could stay oriented and not freaked out like last summer. He's picked right up on it. Today, Andy needed a little sit-down before pooltime, and Joey was pretty upset. I told him to get his suit on, and I got mine on, since he likes it when I swim with him. Then I came downstairs and discovered no Joey.

Back upstairs... no Joey.

Apparently, I forgot to lock the door when I brought the fireworks in.

I popped out but didn't see him looking down the street, but that was also likely because he was behind a car or something. Awesome Neighbor's grandfather came over to tell me was, indeed, headed down the street, and was far enough along that running wasn't going to cut it (he had seen me pop out and call for Joey, so he started looking, too). I hopped in the car, and was off to catch him. He turned up a street, headed for the pool himself. When I caught up with him and asked him where he was going, he clearly said, "The pool! It's pool time!" So I explained that he needed a towel, and had no money for the snack bar, and they won't let him in without an adult! And he hopped right into the car, no complaints or anything.

Whew.

This might be a long summer.

Hint of what we've been up to, until I have a minute to blog

2011-06-22T00:51:00.002-04:00

And Happy Solstice!

Happy Father's Day

2011-06-19T20:27:00.002-04:00

To JoeyAndyDad, because he is so awesome
Because he loves his boys with all his heart, and al his might
To a Dad who pushes his boys to be the best they can be
A Dad who teaches his boys new things- like drinking from cup, or setting a table
A Dad who goes to IEP meetings, and scrutinizes them at every report card day
A Dad who loves to hug his boys, and read to them at night, and squish them all day.

To my Uncle Lou, because he understands
For his patience and acceptance of our guys
And his willingness to give them the time they need
And the hugs they want.

Happy Father's Day!

Hmmmmm... The Issue of Recognition

2011-06-16T15:55:00.009-04:00

When I was in fifth grade, the great goal of the "gifted" set was to be on the Safety Patrol. To wear that sash and badge and help direct the little ones to their buses was the mark of honor, the reward we got for putting up with a good deal- jibes and teasing from classmates for being nerds and curve-breakers, the scrounging of the over-acheivers and their busybody parents (helicopter parents are not as new as some would have you believe), and the work involved in learning and doing extra work that was often assigned to keep us busy. Being socially isolated on top of that, I took great pride in showing myself to be somebody by wearing that badge. I had the extra knock in fifth grade because I didn't test into the highest math group (in the tests, though every single I gave was accurate, apparently I did not do the problems quickly enough...), making me a social pariah even among the gifted group as "not good enough."*

When one is doing a lot of work and getting very little reward or seeing very little use in it, little things like awards and certificates and hearing your name called can be a huge deal- especially when you are a child.

Seared into my memory is that day I was not made a patrol for a whole six weeks of the fifth grade. My whole little world was aimed at maintaining my position, perhaps to be eventually made Captain! But no, I was knocked aside- with only one B on my report card (my handwriting sucked)- for a girl with all Cs, and one who was particularly good at making it clear I was none too socially included in my class- I was too tall, too plain, too fat, and too bookish.

I remember the teacher sending me out of the room, because I actually started to cry. Did she have any idea what a disaster had befallen me? No, she had no clue. I got a lecture about how I was supposed to be so mature, how she needed this award to go to this girl who had worked so hard to get that all-C report card. How I would have this honor many times, and this might be the only chance this girl got. Oh yes, I remember. I could quote you the conversation exactly if I didn't think you'd find it boring. And I reacted like a 10-year-old might, left to pull myself together in that hall and chew on my disgrace among my peers, alone. To be honest, it still makes me tear up, that's how horrible it was. After all... I was ten years old. The reverberations from that disgrace actually did follow me for the rest of my school years, forever on the fringe.

At ten, I comprehended what the teacher wanted, and why this had happened. My brain processed it coldly, and still chews on it now. Someone else needed a reward. They needed something to work for. They needed a goal, a carrot before their nose. And apparently, I was undeserving of that. My work was worth nothing compared to the needs of another. My needs were not as important as another's. Clearly, my own pain was a frivolity, my own position of less worth. Why would a child who has talent need a reward for those talents?

We can, as adults, probably see clearly why that girl needed that safety patrol badge more than I did; I can already tell you who will tell me so, either in the comments or the emails I will get later, about how petty and childish it is to dwell upon that moment, or still feel it painful to do so. Certainly, that teacher did what she needed to do to help that other girl- she rose to be Captain of the Patrols (what a miserable six weeks that was for me), and a decent student through high school. I can sit here and reason it out and provide solid logic for it. None of that adult reasoning does anything to help a ten-year-old girl, I can tell you, especially one who was still considered new and trying to fit into social circles enough to at least not feel alone.

Joey came home today with his awards from school (we didn't go to the ceremony because he was at Mt. Vernon- he got his awards when they got back). He has certificates that say he knows multiplication 0-4, and 0-9. Woo. Hoo. He's known those for almost two years now. He had a nice Health Award, and a Most Improved Participation in Music award.

And that is what he got. No math. No reading.

Kinda makes you wonder about who gets awards and how it is determined, doesn't it? Your top math student gets no math award? What's that about? Do people not understand what powerful reinforcement these awards can be?

Trust me, I just spent a lovely twenty minutes hearing all about it. The field trip to Mt. Vernon? I had to pull teeth to get anything about it. That two other students got math awards, and he didn't? I know all about it. And I assure you, I will be giving him lots of hugs and kisses and working hard to make him understand how proud I am of him tonight. After a year like he has had, to have no recognition of his strength in math before his peers is, I know well, searing. Already being the only top math student not in the gifted program, plus being disabled with social interaction issues, is quite bad enough, without this. Add into it the loss of the spelling bee. And after the year he's endured? Come on, let him know you are proud of his academics. It's not like its even being a patrol- all it costs you is a piece of paper. Seriously.

*And just a little fault of vindictiveness here, boy did I prove that to be a joke when I became the youngest captain of the high school math team as a junior.

Kittehs Available to Good Homes

2011-06-15T15:01:00.003-04:00

A neighbor has five lovely little kittehs up for adoption. If you are in the Baltimore-Washington-Richmond corridor/area and need a nice babeh kitteh, drop me a line, I'll hook you up with a little sweetie-petitey.

We Have A Winner

2011-06-13T22:27:00.003-04:00

With the end of the school year comes those awesome awards ceremonies, where you get to see your kid get an award for being awesome. Last year, Andy got no awards. He was very upset, and I didn't blame him, since he worked very hard all year. But that is how it goes with awards- not everyone gets one.

This year, he got three.

Andy earned his Excellence in Reading and Excellence in Math awards, which are based on the testing the schools do. The Reading one also considers if you choose to read or write when you have spare time. What was super-cute is when they asked "and who will be doing lots of reading this summer?" he hesitated before tentatively putting up his hand... half-heartedly. Hmm. But don't worry, I have some awesome books for him for the summer, we should be fine. The math award is more rare than the reading one, so that was pretty cool.

He also got the Good Citizenship award- the one you get when you have behaved yourself all year and been a good friend to everybody. Suspiciously, the bully we had to contend with this year also got Good Citizenship. Hmmm...

I am super-proud of my soon-to-be-second-grader. He is awesome, and worked hard this year to be super-awesome. Go, Andy!!!

Take Me Out to the Ball Game

2011-06-11T21:12:00.006-04:00

It was Joey's last game of the season. How quick was that? Andy went out to play, too.

Joey is really running, now. There is something lovely about running those bases, especially with an awesome buddy!

Andy likes to field with the best of them! Especially looking cool.

Joey fields the ball.

Andy going for a ball He's pretty good at getting it to one of the real players, so they can throw it to first or home.

Joey and Andy make a great fielding team!

Andy got the ball a few times this game (sometimes he doesn't get one, and feels sad.)

Joey makes a sharp-looking outfielder, too.

He also played first base. No catcher today, it was too hot for anyone to put on the pads.

Joey got two excellent hits today! (We only played two innings.)

Joey gets on base.

Andy taking a break in the dugout. There must be other Little League games today, because the Little League set up its concession stand while we were there. Andy got some cool candies.

Joey, about to be safe at home! Go Joey!

We will miss you, Challengers! See you in the Fall!

Snickers is not just a candy bar. Unfortunately.

2011-06-06T20:46:00.002-04:00

It happens to kids at all ages, all abilities, all over. The snickering. A little knot of kids glances at you, lean together, and it begins. You just know there is something about you that they think is weird, odd, ugly, funny. What really gets you is that they have their own quirks, and would be just as hurt if the snickering was about them.

Some kids get more snickering than others. I remember the snickering myself, the tall fat girl who knew too much. The curvebreaker. The weird kid. It can be very hard to see it so obviously aimed at Joey, to hear what the snickers are: Weird kid. Retard. Fat. Stupid.

Most of the snickering is a passing thing. Like driving along the road, I hardly even notice it anymore, registering as ignorant person is here-snickering-gone-forgotten. The effort needed to interrupt and educate would be seen only as further annoyance, the lesson lost on those who couldn't care less what pain they cause. The weird kid's mother is saying something, but it sounds like Charlie Brown's teacher: "wa wa wawa waaaaa."

Yet they stick like little pins, even in good times. Especially in good times.

A child, older, at the Beach Party. Joey said hello. The kid responded off-handedly, then mumbles something to a friend. Did I blanche at hearing those terrible snickers fall from the lips of a child Joey bothered to speak to, called by name? The friend says, "hey, that's the kid's mother!" and the kid turns his face to me. There is no point in saying anything, the child might be eleven, he knows his words are not something he would want "that kid" 's mother to overhear. I restrain myself to simply glaring at him. He stares back, he doesn't know what to say or do. I pass him to go say something about a picture Joey has drawn. Hint, kid: if you wouldn't want the kid's mother to hear what you are saying, you should be thinking hard about why are are saying it. Or thinking it. Or how you would like it if someone said that about you to someone else. Especially in front of your mother.

Two boys, nine? ten? one might be eleven? playing at the pool. The youngest says hello to Joey. Joey is absorbed in his own activity of shoveling water and barely responds. They move away from him- but if I can hear it, Joey can hear it. Weird kid from school, that's what he is to them. They play a sort of odd play with him-shun him pattern most the afternoon. I'm not sure he notices, he is busy with his own play, and seems unperturbed when they swim away from him after addressing him. He has a friend to play with, a girl with Downs, the boys refer to them as the "retarded kids". I probably turn purple. If I get up and fuss at them, would they hear me? Would they care? Would their parents simply back them up? I know these boys, I have seen them at the pool before and the playground, and I know the answers to these questions. Consequently, I save my breath. There are plenty of other kids for Joey to play with, he steers clear of them, he knows.

These aren't run-of-the-mill child-jibes. This is serious. My child is going to have to go through his life dealing with these people, because there are people who believe it is OK to make fun of people with disabilities. They think people like my son are of less value than themselves, or think so little of themselves that they want to devalue Joey in an attempt to inflate their own. People believe that to be disabled is to be broken, to be less, to no longer be worthy of being human, or even having the right to live. People see no value in including those with different abilities and challenges, fail to learn the lessons of understanding, acceptance, faith, perseverance, strength, and hope that my child has to offer- in addition to the lessons he offers in reading, writing, and arithmetic, those all-important school subjects. To so many, Joey is a waste of time, a waste of money, a waste of resources, a waste of breath. Those many miss so much, lost in their ignorance, spreading it to their friends, their neighbors, their children. They don't understand that it is wrong, because they have been taught by our society that it is OK to snicker. Everyone snickers. Everyone gets snickered at. We all learn to just cope with it- ignore them, or worry about them, or poo-poo them, or whatever. What's the big deal?

Those standing in similar shoes as mine know exactly what the big deal is, as we struggle to teach our children to cope, as they don't just "pick it up" and are at a loss to defend themselves. The cry of "get thicker skin!" is such a sad one, a cry of of despair, one that shows complete ignorance of where I stand or the challenges my child faces. Trying to communicate the problem sounds incredible to those who are ignorant of it. We all get teased, it's what kids do, learn to deal, all kids have to, its a phase, they'll get over it. It is like trying to explain the difference between a tantrum and meltdown. The difference between a picky eater and a neophobe. The difference between a child wanting a toy to hold and a child needing a toy to hold. The limitations of human language become frustrating, but waxing mythic doesn't help. Most people don't want to think about things on the slant, don't want to deal with narrative metaphor. We seem to think it a deficit when autistic people only think concretely, but when non-autistic people can't move beyond the concrete, it's our problem that we can't communicate.

Then they snicker about how stupid we are. How's that for weird?

The Good is in the Eye of the Beholder

2011-06-04T21:03:00.004-04:00

Joey's school had an awesome end-of-year Beach Party yesterday. They had crafts, two moon bounces, an area for chalking up the sidewalks, a raffle, free drinks and snacks, and a DJ for dancing (who did an excellent job selecting music and being appropriate and silly). Party it up for summer!

Joey enjoyed the chalk. He liked drawing Angry Birds and writing things like "I love Dad" and "For ages 7-12 with adult." Whenever it got overwhelming inside, he did a pretty good job of going out and bouncing or writing. He also made himself an ultra-cool Angry Birds pinwheel. Self-regulation win! Our only brush with a real meltdown was right at the start. There were some super-sized beachballs for the kids to play with, and Joey was playing with one. Some of the bigger kids came along and knocked it away from him so they could play with it all over the dance floor. Joey was, naturally, upset, especially since the bigger kids were not interested in letting him play, too, but were concerned with knocking it away from each other. Hence, the distraction of making the Angry Birds pinwheel, and our first trip outside to discover the chalk and moon bounces.

With the dance floor so loud, I was very pleased to see the school also have quieter areas for the kids to retreat to, such as the crafts and the outdoors chalk and bouncers. It worked perfectly!

I won't say it wasn't hard to watch him, though. All the other kids were dancing, laughing, shouting at each other, tangling and mingling and getting into groups. There was lots of line dancing, which Joey showed some interest in but clearly couldn't keep up with (I may track down some of the songs and see if I can teach him the steps, though there was one called the "Cha Cha Slide" and that, when they told you to "cha-cha", the step everyone did was not a cha-cha, but a cross box-step. Kinda weird.)

Anyway, otherwise, Joey pretended the floor was sand and that he was a dunebuggy or a car, with his pinwheel as the steering wheel, and walked circuits around the dance floor, ignoring everyone (including his best buddy who followed him around trying to get him to dance). One exception- early on, about half a dozen little girls saw him, squealed as if he were a rock star, and joined into a huddle of hugging him. Over the course of the evening, these young ladies each did their best to get him to dance, made sure he met their parents, and often gave him hugs if they found him (and he's return the hug quickly before driving off).

I let him know that if he wanted to leave, he was welcome to do so. He did go outside a few times. However, he spent most of his time doing circuits in a room that was clearly overwhelming for him- dark with flashing lights, lots of people moving, and incredibly loud music. He knew his friends were there. He knew that is was a party, and he was supposed to be having fun. He wanted to be there. He wanted to see his friends, and be part of the party. He did his best to cope and be a part of the party.

Towards the end, as he got very tired, he and his buddy grabbed a hula hoop, sat down, and pretended to be Porky Pig at the end of a Looney Tunes cartoon. They laughed. They enjoyed themselves.

I won't say it wasn't hard to watch him doing circuits when everyone else was dancing and interacting. It was hard to see him ignore the world and be alone in a sea of people.

But he had friends, who tried very hard to include him. They were happy he was there, and he was happy to see and be with them. Joey had fun. He was happy. His way.

We are SO going to this thing next year.

At the Faire

2011-05-30T21:09:00.004-04:00

Took Andy to the Virginia Renaissance Faire this weekend. Joey didn't want to go. He was worried people would chase him. Andy and I had a really good time, though!

After the Fact

2011-05-26T23:50:00.004-04:00

I was hugging those boys today, and thinking how proud I am of them. They have lives so different from what I had thought they might have, so different from my own, with challenges I never imagined when I was young. They come through with the grace and dignity and strength that takes my breath away sometimes.

My grandfathers and grandmothers never knew my boys. That seems somehow really strange. My last grandparent died two and a half years before Joey was born. Pop Conway would be proud of my boys. I do my best to make them all proud. They show respect to other people as they can (hey, they are only 7 and 9)- please and thank you and bright smiles go a long way in a world where they seem to be fading from general use, especially in young children. Joey is smart and sweet and ready to help his friends and please his teachers. Andy cares for his brother, loves animals and gardens and light sabers, always ready to include new friends. People remember my boys when they meet them, they have presence and character. There are skills that come from parenting, which combine with solid character and personality to create good little people.

We work on those challenges of growing up together. We work on the hiccups and potholes and trips and falls.

Andy wanted a snack at bedtime, and was told that wasn't appropriate. He had eaten dinner, and hadn't asked for more, only an hour before. He was actually hungry, and not just bored and trying to prolong bedtime, and blew up. What other stresses were in play? He went upstairs dutifully, but with his mouth going.

"I hate Mommy!" we heard quite clearly downstairs, as we prepared to go up. He was instantly recalled, and affirmed that he meant this, and was sent back upstairs with no prospect of a bedtime story.

He figured out really quickly that he was in trouble. Bath was done in record time. There wasn't a peep from that room until Joey was done his own bath, then a little boy creeping to the top of the stairs.

"What do you need, Andy?" JoeyAndyDad stopped the little feet coming down.

"I want to hug you," came the little voice.

Dad put an apple in his pocket and headed up to have a chat.

"Your Mommy loves you. That really hurt her feelings," I heard, and waited. There were tears, remorse, grief. Down he came to tell me he loved me and get hugs and kisses. I told him I loved him and gave him all the hugs and kisses he wanted. Back up he went.

"Did you tell her you were sorry?"

"No."

"Get your bottom back down there!" JoeyAndyDad ordered in a loving, almost teasing tone. Down he came again.

"I'm sorry I said I hated you," he said in a small, teary voice. I hugged him more, kissed him.

"I know. You'll learn soon to only say things you mean," I assured him. "I love you."

"I love you, too."

And up went that little man, just a little more grown up.

Happy Anniversary to Us

2011-05-24T22:28:00.002-04:00

Fourteen years ago, right this moment, JoeyAndyDad and I were partying it up with our friends as a new married couple.

We're thinking of all of our friends, old and new, and raising a glass to you.

Happy Birthday, Andy!

2011-05-21T21:54:00.004-04:00

Can you believe that Andy is now seven? Where did the time go? And who is this tall, handsome dude in my house?

Andy had, i think, a lovely birthday. He started off as bat boy and buddy at Joey's baseball game. He likes being included in the games. We actually gave him the option to not go, but prep for his party instead, and he chose to go help his Joey. That's our birthday boy!

We gathered for cake and ice cream in the back yard after lunch. We had an awesome Darth Vader piñata (our theme today was Star Wars Ninja Pirates), with candy, super balls, parachute dudes and ninja dudes in it. That was hit. I am definitely doing the piñata thing again next year. Maybe I'll have time to make it myself, though- they're a little pricey.

Joey was the one who broke the piñata. It was pretty cool.

Andy decided to try the dark side out for size. Well, at least Darth's helmet and face from the piñata. He had spent the morning asking if he could wear it, and we kept telling him no, but we hadn't planned on it failing catastrophically. Since it did, he got to wear it after all.

So we spent an afternoon in the yard, defeating the Evil Bubbles of Doom, playing with moon dough (which I recommend- it is pretty cool stuff) and general hub-bub of wild playing-with-our-friends. It was pretty awesome. And I periodically punctuated the frenzy by adding more sugar.

We had ice cream sandwiches of different flavors (neapolitan was a favorite), candy in the piñata, and of course, cake. Andy asked for a yellow cake with chocolate icing. Nearly blew me over. He doesn't usually like chocolate. He got it, and ate it, so hey, I'm not complaining. I put the ninjas on the cake since the rest of the decor was Star Wars, with a splash of pirate tossed in. I hoped the blue marchmallow stars would be spacey enough to connect it. Who cares, it all get eaten, marshmallows being bonus. And everyone wanted a ninja.

Andy got lots of cool stuff. He still has a couple things he didn't open, but we wore him out. He'll have fun opening them in the morning. He got plenty of awesome legos, nerf guns, Star Wars stuff, and these weird little plastic things with faces that come off. Seriously. No clue what they are called, but they sell them alongside the trading cards. He's been wanting them for weeks.

So, Happy Birthday, my little man. We love you.

Hail, hail...

2011-05-19T08:12:00.003-04:00

You don't often see hailstones around these parts, so when we heard them come crashing into the house, we of course ran outside to see them. They were pretty good size, too- about the size of largish peas. Big enough to be impressive, nt large enough to do serious damage.

Andy thought they were delicious.

New Friends Around the Corner

2011-05-17T18:26:00.003-04:00

We have made an auspicious discovery- a couple of very nice kids we often see at the park, and who was on Andy's soccer team, live around the corner. We haven't known this before because the kids are homeschooled, so we didn't see them at the bus stop or at school activities; we knew they lived in town, but not so close.

We discovered this yesterday when the boy (who is about Andy's age), was coming up the street. Andy ran to say hello, and M announced, "T (his sister) is roaming free!" We agreed to help look for her, as we know the panic of not knowing where your child is. The result was I had Andy going one direction, Joey going the other, and only one of me. In the end, we all ended up at M's house, and T was found safely fast asleep on a couch, missed because she was next to a pile of folded afghans.

Andy is ecstatic. So is Joey, for these kids actively try to play with him, and they like to hug. Also, there is a baby, To, and Joey has been showing him things and "taking care of him."

We had another playdate today, It was supposed to be here. It was like a tornado was raging in the house. It was fabulous, if breathtaking. But I learned a lot.

For one, if I forget to lock the front door, trouble ensues. These kids don't quite understand, and run freely in and out of doors, and have no clue why that might be a problem. As Joey got tired and excited, he got touchy- and bolted. They figured out he was running and I was trying to catch him, and handled that pretty well. After all, To likes to run, too.

Two, Joey bolted straight for M and T's house. I gave them our phone info in case it happens again. They were very kind, and the playdate shifted to their house. T's room is all in orange, and Joey liked that a lot. Its also someplace new to explore, which can be very exciting.

New friends are always a delight, and I hope we get to play together alot. The mom is awesome, and has lots of interesting ideas about children and learning and playing; I may not agree with everything, but it is always interesting to hear a new perspective. I am thinking we might have a good party in the making, as there are several other kids on the street we know from school and whatnot now. Besides, anybody that shows this much patience and acceptance of Joey has turned out to be totally wonderful. I'll keep you posted!

Missed Blogiversary

2011-05-16T08:29:00.002-04:00

Oopsie, I forgot to toot the horn on the 9th for my blogiversary. And it was a big one- five years!

Five years ago, I was a mom getting bearing in a sea of anxiety, misinformation, discrimination, and panic. I saw others floundering all around me. I decided the information I had might help somebody else who was feeling lost, alone, scared, angry, disappointed, and floundering. I picked up my blog account from a blog I didn't make a go of, and started writing.

It was cheaper than therapy.

Joey was four years old. He was still in preschool. He had been going to preschool for two years. He was still mostly non-verbal- every word, every sentence was celebrated here, with you. Our school situation was in IEP crisis mode. We still get that. Our lives were dominated by Oobi, Pinky Dinky Doo, Little Bear, Potty Power, and yellow school buses. Meltdowns were a daily thing, so much so that they went unblogged.

The contrast in those early posts between Joey and Andy was so marked- Andy could talk, Andy could interact, Andy could point. He was only two years old.

It's been a long road, and we look forward to the overgrown thicket of a road ahead. Hopefully we can improve on the pruning of the folks who blazed the trail before us. My boys are the most awesome people, and I just want the whole world to be warmed a little from their sunshine, especially on the cold and raw days that so many of us struggle through.

Thank you for all the positive support and comments that have kept us snuggly on our bitter days. Feel free to make yourself at home on the comfy couches of this corner of the internet!

House Rules

2011-05-13T21:34:00.002-04:00

So we're working on a new system for helping the boys understand expectations: pick up the toys, don't kill each other, that sort of thing. So we took them to Friendly's, sat down with french fries and paper, and hashed out what we think is fair and helpful. We wanted no more than ten rules, and if they get through the day obeying those rules, they get a check or a sticker or something. And in the end, if they earn enough checks or stickers or something, they get a Prize Box. Woo-hoo!

Here is what we've come up with:

Make the bed every morning.
Except for apples and water, ask for food or snacks.
Don't do anything that makes anyone else scream or say "ouch".
The bathroom floor must be clear and dry after any bath.
Keep hands and feet to yourself.
Speak respectfully to everyone, using only respectful words.
Do what is asked, right away, and with a smile.
Treat others as you wish to be treated.
Homework first.
All toys must be taken upstairs and put away at bedtime.

This is kind of a first draft, but not bad for being discussed over ice cream.

The lady at the next table actually stood up as they were leaving and kindly expressed approval of our boys, of our parenting, and how we were discussing the matter. How's that for awesome?

Rampion, Rampion...

2011-05-10T19:09:00.002-04:00

For our first serious venture into gardening, we decided on lettuce, turnips, and radishes. The lettuce is ready, and the radishes are ready. They are the most beautiful radishes I have seen ever, and big ones, too. I'm impressed. That's what happens when you fill your old sandbox with miraclegro potting soil and plant radish seeds in it, I guess. We have a serious bumper crop of big, beautiful, red radishes.

Unfortunately, the boys have decided they don't like radishes. (The lettuce is still loved by Andy, but if you want some, come help yourself.) So... what does one do with a bumper crop of radishes? I am seriously considering learning to carve those cute little flower garnisher thingees. I have plenty to practice on.

A Bit Of Spring

2011-05-07T08:08:00.002-04:00

Some Advice To Parents In Making the World A Little Nicer

2011-05-05T08:19:00.002-04:00

Based on observations and situations from this past week.

1. Teach respect in all situations.

If you teach your kid it is OK to rejoice in an enemy's death, you'd be surprised how quickly that translates to spitefulness and rejoicing in victory over anyone they decide is even mildly annoying. Treating others the way you would want to be treated is a basic lesson in respectful values. If you don't want anyone to dance on your grave, don't have a party on someone else's. I don't care what they did. Don't stoop to that level.

2. Don't use the word "retard."

Or "nigger". Or "spic." Or "fag." Or any other word intended as immanently offensive to another group or person. It isn't funny, it isn't casual, and I do not care who you are or how you think you are using the word. When you teach kids that "retard" is OK to use when you think something is dumb, stupid, ugly, nasty, etc. then you should not be surprised when they start treating people they regard as "retarded" or who act differently as if those people are dumb, stupid, ugly, nasty, etc. If you use these words in any way, don't be surprised when they start bullying kids they view as not even human beings- because that is what you taught them- with any of these ugly words. With rights comes responsibility, and we in this country have the awesome and wonderful right of free speech- and the awesome responsibility that comes with it.

3. Be aware of your child.

Home is not the only place kids pick up bullying and nastiness. Their own insecurity makes them sensitive to language and behavior of others. Pay attention. If another parent approaches you with an issue, address it immediately. Be sure your child understands what is acceptable and what is not. Would your child want to be ignored on the playground? Would they want to be called an ugly word? Would they want their pretend play laughed at and scorned by others? Would they want others throwing sticks or mulch at them? No? Then they shouldn't be doing these things. Would they want others to help push them on the swing? Would they want other kids to invite them to play, and explain the game to them? Would they want others to say hello to them? Would they like it if others shared their toys with them? Yes? Then they should be doing these things. Kids need help negotiating this, because they are developmentally wired to be selfish as natural self-preservation. Reminding them to treat others as they wish to be treated is an excellent way of helping them understand that other people have feelings and peers make potential friends.

4. Be aware of other children.

Is your child being bullied, picked on, teased, ignored? We can't control what others do, but we can control ourselves. Teaching your child appropriate responses to unsocial behavior and language helps that child understand how to show respect in all situations- including unfortunate ones. Steer clear of other children who are mean to you. Recognize when they are being mean and let adults know there is a problem. KNow who your friends really are. Peers have a potential of being friends, but not all of them are friendly. I have a Plan B whenever we go to the park, because there are some families that simply do not get the idea of treating other people with respect, and think it is funny or "just being boys" when their child is mean and ugly to other children. When I see them coming, we just leave.

What would the world be like if we showed respect to other people, no matter what?

HAPPY BIRTHDAY, MOMMY!!!

2011-05-03T10:11:00.003-04:00

Happy happy birthday to the most awesomest Mommy that ever ever was, the coolest, most wonderful Grandma ever, and one of the most fantastic ladies you'll ever meet (and probably the nicest).

I love you, Mom. Thank you for being supportive, understanding, caring, and snuggly.

I love you 44.

A Great Challenger's Day

2011-05-01T18:25:00.002-04:00

Joey was a totally awesome player, and Andy was a totally awesome buddy, and it was a totally awesome day.

That's your cue

2011-04-30T19:16:00.002-04:00

Empathy. It is one of the markers people use in judging others. Does this person empathize with me? And how do I know?

Did you know that those cues for knowing how others feel, and whether they are empathizing with you or not, is culturally and socially determined? It is not totally universal? That the way we express emotion- or fail to express it- is also cultural?

Joey's teachers are very concerned right now about his ability to empathize. The reason is that when he is reading a book or looking at a picture, he cannot seem to communicate how the character in the book or picture feels. When asked, he often tells the teacher how he himself feels, regardless of the story or the picture.

For example, Joey was reading about Nathan Hale, and they got to the end of the story- you know, when he is hanged by the British. They story was pretty matter-of-fact: he is taken to the gallows, regrets having one life to give for his country, and is hanged. There was an accompanying picture showing him with the rope around his neck. The teacher asked him how Nathan Hale felt.

Joey said he felt happy.

According to the teacher, this was the wrong answer, and that Joey said "happy" because Joey was happy, because reading was almost over, and so was the book.

I have another theory.

See, the problem is that Joey not only has empathy- he understands how people around him are feeling, and understands they might be feeling something different from what he himself is feeling- he also has the next step, compassion. When someone else is hurting, Joey gets upset. With a scraped knee, he knows what to do: go give the person a hug and ask if they are ok, and say comforting things. If that hurt is something more subtle, he has no idea what to do. The teacher is upset- I don't know why- what do I do? So his reaction can be unexpected.

How can he have empathy for people around him, yet seem unable to communicate empathy towards characters in books and pictures?

Well, how do we tell how a character is feeling? Perhaps we think about the details of the story, what we have read, and know that those things would make us feel a certain way if they happened to us. We look at the face of the person in the picture, or the way they are shown holding their bodies. We pick up on cues we have been taught to look for- scrunching eyebrows, smiles or grimaces, a look in the eyes.

We know many autistic people have trouble picking up on these cues. So how can they have empathy?

Did you see how those two sentences didn't go together? What does "pick up on cues" have logically to do with "having empathy"? Logically, there is a problem there: picking up on cues does not cause you to have empathy or not. They are two separate things entirely.

Joey is picking up on cues of some kind- he knows how people around him are feeling. Sometimes he is even hyper-sensitive to how others are feeling, and it overwhelms him- especially if he does not know how to react to those emotions or those people. My theory is that he is picking up on different cues than the ones we expect: ones that don't translate well into words and pictures. A still picture doesn't have a cue he uses to determine how the person is feeling. A simple set of sequential facts to relate it back to an experience he has never had (Joey has never been executed for being a spy, for example) is meaningless to him in determining how another is feeling.

But he has just been asked a question about feelings, and he knows- he has been hard-trained- that he must answer. So he gives the questioner an answer- the one that pops into his head as ready and relevant would be his own feeling.

Though with Nathan Hale, I am a little dubious. After all, the man just said he regretted he had only one life to give for his country- the logical leap that he might be happy about being executed is not a terribly gaping one for a third grader to make. I've had college students do worse.

Reading

2011-04-27T08:13:00.004-04:00

While we are in the confessional here, I have a real shocker for people who know me:

I don't like to read.

I far prefer doing other things.

Reading is a tool- and excellent for gaining new information about all sorts of topics, for discovering new stories and new lines of thought. But I don't like it. That may seem really strange when I spend my life in academia, where reading is an absolute necessity. It probably seems strange to people who know that when I am disturbed in the middle of a book, I can be quite snappish and grumpy. I was up until 2 this morning reading a story I love.

Reading is an overwhelming experience. The pull of words and scenes and characters becomes a sensory overload. Tearing away from a book to come back to this world is like being shoved from a movie theater into the bright sunlight, when you are still processing and thinking about the movie. Ouch.

If they published good, interesting books as audio books- not just junk fiction and "nonfiction"- I would love it. I am very much an auditory or aural learner, not really a visual one. But from what I have read about auditory learners, I don't fit those descriptions. I keep reading (I didn't say I don't read, I said I don't care for it and I would prefer to do other things) that auditory learners think in words, are bad at math and good at foreign languages, and have trouble visualizing things. I probably do think in words, but creating pictures is not a problem, either. I stink at foreign language, but rock at math. I remember things better if I hear them rather than having to deal with words. Letters and words can get very jumbled on a page and overwhelming, and I have to stop and read it again, making it take longer.

I purchased a copy of Ivanhoe in mp3 because I had always wanted to read it. It was like having a whole new world, to be able to listen to the book instead of fighting with print. And besides, have you ever read Ivanhoe? Awesome.

I have been thinking about this more because Joey is so very visual, and yet seems to dislike reading. He sometimes says it hurts. I wonder if he means it is overwhelming. Perhaps he becomes engulfed as I do, though I have never seen him be engulfed in a book exactly in the way I get engulfed in a book and can't stop until I reach the end (even in books I have read many times before- did I mention I was up until 2 am?) Perhaps the letters jumble up, or make other kinds of patterns for him, and remembering they are words is something that requires more energy for him. Perhaps he is expected to read too quickly, and needs a lot more processing time to really understand what he is reading, just like me. And perhaps it is a totally different issue than anything I can right now picture or understand.

Trying to get Joey to understand that reading is a tool that provides him with information is has been a challenge. I think once he really understands what words and reading can do for him, he'll be happier. I wish I knew what the obstacle was, so i could help him get through it to the other side.

P.S.- Joey reads beautifully, when you can get him to do it. So it isn't an issue of ability.

Confession

2011-04-26T19:53:00.002-04:00

I wish I could never hear these words again:

"I'm a bad boy."
"I'm an ugly boy."
"I'm so stupid!"
"You don't love me."
"Andy just hates me."
"I will never..."
"I will hit you SO HARD!"
"Just smack my butt. Smack it now."
"You hate me! Why do you hate me?"
"Just kill me now. Kill me."
"I want to die."
"Everybody hates me! Nobody likes me!"

That is all.

Handsome boys

2011-04-26T08:20:00.003-04:00

Echo... echo... echo...

2011-04-26T00:04:00.002-04:00

Andy is starting to do an odd thing, and I was wondering if anyone else has seen or heard this in the elementary school set.

He echoes the last one or two words he says under his breath.

So a conversation with him goes kind of like this (regular type in regular voice, italics whispered):

Hi, Andy, how was school today?
Good. Good.
What did you play with Kylie today at recess?
Oh! The blue thing was big and we slashed it and I won, because red is for bad guys. Bad guys.
Can you put these ninjas away for me? They are all over the floor and I'm worried someone might step on them.
I want to play Wii! I have homework (starts picking up the ninja figures). is there soccer tonight? Is Joey home yet? Home yet.
No, Joey isn't home yet. Let's see what your homework is. Where is your bag?
I don't know. Know.

You get the picture. Sometimes it isn't every sentence or conversation turn, but usually it is. Anybody else have a little one doing this? Especially one who isn't autistic?

A Glimpse of an Excellent Day

2011-04-22T21:56:00.001-04:00

Yay, Team Stimey!!!

Joining Team Stimey!

2011-04-22T10:48:00.003-04:00

Yay! Stimey is coming today! (think of me bouncing about like Daffy Duck on a sugar high.)

The fun of having friends come see ou is they find out all sorts of awesome cool things about you. Today, Stimey will learn:

1. When I say "my house is a disaster" what I mean is "Please don't call the health department on me. Pretty, pretty please with a cherry on top."

2. I can't hard boil eggs. But she may not find out that until she tries to eat one of the eggs we dye.

3. Joey is having a semi-good week. Which means he is having a semi-not-good week.

4. I bought her kids guns. But I still like her. She might not feel the same, though.

Here's to a great day! The plan is Ferry Farm, Lunch, Bug Box, and then Egg Dyeing, though who knows what adventures actually await!

Quiet week.

2011-04-19T16:55:00.001-04:00

Its Spring Break for the boys here. I may not have a lot of posting time, but I should have some good stories when I emerge from it next week.

Autism Myths I Get Tired of Hearing

2011-04-13T08:05:00.002-04:00

Ah, April. The month of Awareness. Lots more articles, shows, ads, and information bouncing around about autism, and not all of it accurate or useful. There are a few phrases and myths I just get sick of. And since I am grumpy this morning, here they are.

1. Autistic people do not feel empathy or sympathy. Horsehockeys. There is a difference between being able to empathize and being able to do something about that empathy, or being able to communicate empathy. Joey knows how people are feeling around him- often acutely. Being able to react appropriately is more of a problem. If someone is hurt on the playground, he is quick with a hug and kind word. When people around him are nervous and fretful, he gets anxious, too. When folks are sad, he tries to help make them feel better.

2. Autistic people are trapped in another world. Joey's problem is he is trapped in this one, where people seem to lack empathy for him. Who is the autistic one, again?

But seriously, communication disabilities aren't about being locked up somewhere else. They are difficulties in being able to communicate what you are thinking and feeling to other people. That's not being "locked up" somewhere else.

I have often seen it bandied about medical blogs that people would rather die than live with a communication disability. The idea that a person who can only move their eyes or who can't communicate should be abandoned for dead is horrifying to me- can you imagine being in a room and hearing, "Well, she can't communicate, so let's turn off this respirator..." and you want to scream like Horton's Whos, "I am here! I am here!" and your life being so little valued simply because you cannot speak? Are you "locked in another world"? Or are you trapped in this one? What if someone took the time to teach you another way to communicate, work with you to move your eyes, your hands, anything at all? Would you still want that respirator turned off? Or have them stop all food and water and just "let you die"? How scared and frustrated would you be?

How many kids live that way every day, because people who are not autistic, who are supposed to be special needs professionals, have no empathy for them? And then they wonder why the kid melts down?

3. Autistic people are violent, or prone to violence. Prove it. Show me the studies. Autistic people are likely more prone to frustration and acting out because of communication difficulties, but "Acting out" and "prone to violence" are two very different things. They are likely more prone to depression because of a lack of understanding, acceptance, and empathy towards them, but "depressed" and "violent" are two different things. Frustration and depression can result in increased aggression, but not just in autistic people. See #2.

Seriously, people, let's look for some real awareness. When going about your everyday lives, try to empathize with and respect others instead of judging them. Try to help rather than scorn. Know that we all have our own challenges and our own strengths, and try to share your talents and meet your challenges, will helping others do the same. We are all unique.

Thank goodness.

Happy Birthday, Little Man

2011-04-10T20:22:00.002-04:00

Where has the time gone?

Last Day of Being Eight

2011-04-09T19:46:00.002-04:00

Joey will be nine years old tomorrow.

Today, he got to be the catcher for his baseball team. He was awesome. But that is no surprise to any of you, I bet.

Tonight, I try to make Angry Birds into a cake and birthday decorations.

Happy Birthday, Little Buddha Buddy.

Bullying, Part II

2011-04-08T09:27:00.002-04:00

So Joey has stood up and taken his stand.

Now it's Andy's turn.

We've been having trouble with Little Annoying Dude (LAD) for a while now. He was in Andy's class last year, and proved himself Totally Annoying to Andy. He delighted in calling Andy names that would seem innocuous to adults (Andy Apple was a favorite), but drove Andy nutso-bonko. There were other small issues, little annoyances that suggested the child simply doesn't like Andy, finds Andy's reactions funny, and isn't very nice. Once of LAD's favorite modus operandi was to act really nice to Andy for a while, and play with him, and then start in with the annoying bits.

We spent some time with Andy talking about staying away from LAD, even when LAD was pretending to be nice. Find other people to play with, tell him that he's being annoying and mean, reporting to a teacher, that sort of thing. Things seemed to be going along as normal, everyday, playground antics. You know, kids, who don't always get along sort of thing. No big deal, right?

Welcome to this year.

Andy has been doing the "I don't want to go to school" dance for a while now, with the excuse of "there's too much work!" This sounded odd to me, and he was resistant to our advice that learning was supposed to be fun and makes you smart. But this week, the tune changed; instead of being too much work, it was too much LAD.

LAD is no longer in our class, but we still see him in the cafeteria and on the bus. Far more concerning is the widening of the stakes: LAD has recruited his little friends into the game. Some of those friends are in Andy's class. And on Andy's bus. And in the cafeteria. And on the playground. And...

Its one thing when you have one kid who is annoying you. It is a whole new problem when you have a whole group of kids who pop up throughout your day pulling the same annoyances, playing with you until LAD appears and then they turn away from you, poke you in the back of the head with pencils, I could go on.

We took several steps in quick succession. We made sure Andy told the child to stop. Andy felt if he went to the bus driver, the group would make it worse, so I stepped up onto the bus and said something myself. I then emailed Andy's teacher to warn her of the issue, as well as the guidance department.

And Andy had another hard day. So the next morning, we "missed" the bus, and I marched around to the office to write a note to the guidance counselor who had worked with Andy before in all his testing. Sometimes emails end up in the spam filter here- but notes go directly into the mailbox. I made the note fairly detailed- more than I have given here- and asked for help for Andy. I was unhappy that he was being bullied in this way, and that it had gotten worse. I was unhappy that he felt he could not go to an adult at school for fear of reprisals. I was unhappy that this had apparently gone on for a fairly long time with no one at school noticing.

Bullying is hard for adult radar to pick up. Innocuous names get shrugged off. If children suddenly change playmates in mid-recess, it is shrugged off as a new game. A child who might cry out in annoyance is told to hush and not interrupt. It is easy to miss the signs, to ignore them, to sweep them aside. All of these signs point to a very serious situation for the child being bullied and trying to get through their day.

Within an hour, I had an email from the guidance counselor. When I called another hour later, she had already pulled in the teachers- for both kids- and started identifying the other children involved, and was about to start pulling them in individually for a discussion of the situation. She was planning to get on the bus and make sure the kids were broken up. The cafeteria was re-arranged to keep LAD away from Andy. As our counselor said, "This is bullying. We don't play this. If you start seeing these signs again, don't wait. Call guidance in immediately. This is exactly what guidance is paid to handle."

We'll see how Andy's day goes on Monday.

Standing Up and Saying No

2011-04-05T16:36:00.003-04:00

We've been having some issues with Joey this year involving new interest in showing affection- trying to kiss and hug his friends and pat them on the behind (who are, incidentally, mostly girls), etc. We have had a talk about what asking people to touch or kiss or hug them, and that girls have to say "no" to kisses in school, and what is appropriate in school versus what is appropriate at home, that sort of thing. We also talked about patting someone on the bottom or being kissed in public being possibly embarrassing to the other person. Things seemed to be going well on this front.

However, one of Joey's classmates apparently thought it was funny that Joey liked to pat people on the bottom, and worked really hard to get Joey to to this to some poor young lady today. Naturally, the girl was upset, and the whole incident was reported, and we got a call from our Vice Principal...

... to tell us how proud she is of Joey, because when this child tried to get him to smack the girl's bottom, Joey said, "No. That is not appropriate!" and refused to do it.

Joey's dignity and courage: 1.
Bully: 0.

Doomsday Averted (We Hope)

2011-04-04T21:15:00.002-04:00

Well, the meeting wasn't nearly as horrible as we planned for, and we think... we think... we got the bottom line straightened out. We're futzing with the different environment possibilities for Joey to try to find ways to keep him small groups with few distractions and as much in the "main stream" as possible (where his academic needs can be better met). These changes require that he have an aide, the kind that knows when to stay in the background, and when to intervene: a "lifeguard." Understanding what we wanted was easy. Figuring out how to word it in an IEP was not.

The interesting resistance we got was about the use of sign language for visual cues. There seemed to be resistance to the use of signs from the speech therapist (how odd is that?) and resistance because "combining signs and picture cues might be confusing." We thought that odd, too. Joey is a smart little guy. He knows what he can access and use at a given moment, and he does very well with signs. It helps his speech and auditory comprehension immensely. Why would adding in using pictures for certain choices (such as what type of activity he wants for a break or what object he needs for sensory issues) to using signs as prompt (such as "listen", "wait", "ready?" etc) be confusing?

Whatever.

We are currently going over the IEP, because it is a lot of information and a lot of goals and a lot that could be misinterpreted by the next team, and we don't know yet who will be the teachers on that team. These teachers have had all year with him, and when they have a goal, they know what they "mean." But is this written to make it clear to the next teacher? Not sure.

Ah, IEP season. Just what everyone needs to lift their blood pressure and get the cobwebs swept from the mind.

IEP Weekend

2011-04-01T09:25:00.003-04:00

This is it. IEP weekend. Our IEP is Monday. I need to run to the store and stock up on vodka and peach brandy. A little Grand Marnier would not be out of line. And plenty of wine.

It is going to be a long weekend.

The facts come to this: Joey's last summer program was a disaster. His year has been a regressive disaster. My style of working with the school and trying to be flexible while getting Joey the support he needs has been a complete and utter failure. We were promised a resource room and now we are learning that it is not coming, that they are going to jerry-rig something that looks like it is not only going to not meet Joey's needs, and not get the much-needed resource room in place, but may even be detrimental to several other students in the system.

Disaster.

So while I am here putting together my power point and going through the failed IEP and figuring out how to get Joey a proper aide and all the ugly, nasty, wretched misery of what will likely be a highly adversarial, nasty, ugly IEP meeting, know I raise a glass to all of you, who know exactly what I mean, how little sleep I am destined for, and how many tears are going to be shed the next few days.

Good health and good things to each and every one of you. Keep the faith. Light it up blue.

My Proud Little Patriot

2011-03-30T22:16:00.002-04:00

In super good news today, Andy got the Proud Patriot Award for his class for March. This is a pat on the back for kids who have been very well behaved and shown "good citizenship." His favorite girl friend also won it this month. They came bouncing in together. It was adorable. Her mom commented to me that they would someday have beautiful kids together. Hey, they've been best buds since they were 3. Who knows?

Eval Meetings Just Suck

2011-03-30T15:15:00.002-04:00

How did the eval meeting go?

I learned nothing new.

I still have no idea what Joey can do, only how he compares to his peers on evals.

The good news is that he mostly tests at an average level for his age and grade.

The bad news is that these tests are administered and normed to non-disabled peers, so we have no idea how far above his grade level he can perform if given appropriate accommodations.

I have no idea what we are going to do with this information.

The other good news we got was that Mrs. H, our awesome teacher from the last school, is going to be split between the upper and lower elementary next year, so she will be working with Joey again. The bad news there is that they were supposed to hire somebody to be full-time in this school as a resource, and now they are splitting the resource between two schools, so that no one has Mrs. H to support them the whole day, as may be needed. But we'll have Mrs. H at our IEP on Monday, which rocks.

So, there was good, bad, ugly, and just useless. I hate eval meetings.

The Big Story of Angry Birds, by Joey

2011-03-29T08:19:00.005-04:00

I got this from Joey's teacher this morning. Click on it. It is worth seeing.

Translation:
Reading log account
The Big Story of Angry Birds (Rovio)

1. The Pigs stole the birds' eggs without asking permission. And they started to get angry. The Yellow Bird got angrier then the blue one. The Red Bird got angrier than the Yellow Bird.
2. They want to get the eggs! (everyone) The Birds have got to trick the Pigs! The Mighty Eagle was there to save the day from the Pigs! The Birds don't want to get hurt!
3. The Next Morning the Pigs Asked permission to get one egg. And the birds said "Yes, you may have ONE egg.
THE END

Coming Soon: Re-Eval Meeting

2011-03-28T21:57:00.002-04:00

When we had our last school meeting, we all noticed that Joey's evals were all woefully out of date, or oddly inaccurate. So we ordered a bunch of testing done, and on Wednesday, we get to look over what Joey looks like on paper.

In many ways, I love evals. They give me a little snapshot of what Joey is doing, what he isn't doing, hat he can do, and what he won't do. It also tells me a lot about the folks evaluating him, as they interpret what they see (and don't see), and how numbers on a paper relate to real actions and skills. Since Joey has so many splinter skills, it can tell me a lot when people act surprised, or talk about the problems of the testing tool, or what they think ought to be done based on the numbers. Some folks are brilliant evaluators. Some are mediocre. Some are idiots.

In many ways, I hate evals. To me, Joey is so brilliant, so creative and intelligent, so hard-working and really pitching, that seeing what that means on paper can be startlingly depressing. When you see how far he's come, and how hard he's fought to get there, to see those low percentiles and scores really takes the wind out of you. Oh, right, he's still disabled. But wow, this disabled? Really? And when I see how many kids are in worse shape than Joey, I wonder what their evals look like. And how their parents feel at these meetings. I get the feeling it ain't pretty.

I worry when I can be reading a story and have Joey just stand up and walk away, as if I wasn't even there. Andy asks questions, wants to look at the pictures, wants to talk about what might happen or what he knows is coming up in his favorites. Sometimes I think Joey is listening, but then he abruptly leaves. Or I think he's busy wiggling, and he comes back with something parroted from the book (so at least he's hearing me!) He has a lot of trouble remember what happens in a story from page to page. I think when I write my Joey Story, I am going to put him in it (to give it appeal) and keep it on a single spread (so we don't have to turn the pages).

I worry when he can't find an object that is right in front of him, or when he can't hand me something I am pointing to. Joint attention remains such a challenge for him. Following instructions in a set sequence is so frustrating. Using a button is still impossible. He's eight years old, and can't tie his shoes or button a pair of jeans. He can't follow dynamic pretend play. He can't maintain a conversation. Answering questions is still a challenge. Communicating events in his day is a distant dream for us.

What will the numbers say? Will they reflect his abilities and disabilities? Or even worse, will they not reflect his abilities and disabilities? How does the Joey on Paper relate to the Joey who is trying to survive school?

Our Saturday: First Games of the Season!

2011-03-26T16:55:00.002-04:00

Alternatives Planning

2011-03-22T22:45:00.004-04:00

IEP season is upon us. Run.

You may have noticed we have not had a stellar school year. We started with the disaster summer program, and spiraled into disaster from there. We have been "in the system" seven years now. This is the first year joey will meet none of his goals.

None.

We've had all sorts of promises made about next year, but nothing on paper yet. We have a meeting next week about all the updates to his evals and his testing and that sort of thing. We know what was working for him. We now can say clearly what does not.

Knowing that he thrives in a model offered at another school, is it "adequate" if he only survives in a new model? What if we think is not, in fact, surviving? And what do we do if all those promises are not worth the air moved to suggest them? What if we walk into that IEP and there is no new autism resource person to help for the next two years? Even delaying it a year would be a disaster we would need to reckon with.

If I need to pull Joey out of the school because of his deepening depression and deteriorating mental health, what options do I have for support and education for him? I had started a gameplan for having to do that when we hit middle school. Not now.

Having alternatives is not just about being prepared for the possibilities; there is also something of having a fallback position that strengthens your current one. It is easier to fight a school when you know you're ready to pack up your toys and go home if you need to. There is something to be able to say, "Give him what he needs. If I can dig up these resources to do it, you can do it- or pay for me to" and slap down that plan with the budget and costs, ready to go. Do it, or due process.

We're getting our ducks in a row. It's IEP season.

Bring it on.