Saturday, December 29, 2012

Stampeding into a New Year

Goodbye, 2012. See ya. Don't let the door smack you on the behind.

Seriously, we've had worse years. And we've had better. But altogether, we seem to be holding on tight and taking the roller-coaster in stride.

We now get to face new and ongoing programs for improvement and progress. With a new year, its a good time to think over what is needful, and getting the balances right for a good beginning.

I've been having a lot more anxiety lately, and that leads to an odd sort of depression. I'm anxious about our current Joey mystery, moreso after seeing the report from Kennedy Krieger, which seems to ignore it. We thought the doctor was more receptive to what we were saying than this report reveals. I worry that I worry too much, that I'm finding demons in shadows that aren't really there. I worry about over-medicalizing and over-analyzing and being over-bearing.

With a spate of good days, it can be hard for me to remember the bad ones. After all, I'm a mom who's been through labor, and then decided to have a second kid, anyway. The good crowds out the bad, and to be honest, I'm usually glad. But then the anxiety comes. Should I be something something more? Something else? Is everything I should be doing getting done? Do we have time for all the interventions I've been told to do? Are they all necessary and helpful, or am I being... what do you call a person who is a hypochondriac about their kids?

And then there are the things that can't be turned aside as over-worrying. Joey needs help with his reading and testing, with his social skills, with his ability to function in a highly complex social world. He's not picking up important cues by example or model; he has to be specifically taught. Middle school is coming, and watching him among his peers is increasingly terrifying when my goal is to give him the skills to cope and survive as an independent and self-advocating adult. I know what model will work, I can see it, and I can see a place that will give it to him. How do I get him there? How do I get the folks at school, who are working so hard to help him, that he needs to be somewhere else? That they are not doing enough, not giving him the appropriate education and support he needs to learn to survive? How do you convince people who are totally sold on inclusion that it isn't working for your child anymore?

Anxiety. And that's just the Joey saga. Andy has an entirely other set of challenges and anxieties. I worry about his mental health, his world dominated by the challenges of his brother. I worry about his own coping with his own challenges. I worry about his arsenal of nerf guns.

Then there is the employment situation. We are dependent on a contract that is in-between projects, and have no timeline for when the next project will get started. We have no idea how long we have to hold on before income resumes. We have no idea how long we can hold our breath, waiting for others to decide to get started. Do we close down the main office, and save that rent money to last a little longer, hoping that the client won't come to inspect our location? Can we come up with new revenue streams, enough to tide us over, and fast enough? What if we don't survive the gap?

Anxiety means insomnia. It means things forgotten and things left undone, to create more anxiety. It means a constant feeling in your stomach that everything could crumble around you any instant. It means looking at the overwhelming tasks before you and being... overwhelmed. To think my kids feel like this every day of their lives is one more anxiety. The spiral begins, leading down into the dark. I didn't even get all my Christmas decorations up this year, and I look around and want normalcy. There isn't any, anywhere.

I am not a normal person living a normal life. I'm more of an Alice wandering through life trying to convince the Cheshire Cat that I don't want to go among mad people, and finding myself at the foot of the caterpillar's mushroom.

Who are you?

So it becomes time to rush into a new year, with new plans, new programs, new ideas. We have Joey and his new suggestions from his new nutritionist. We have a a new school to look forward to, though we are not yet sure which new school it will be. We have new ideas for keeping the house in order (well, the first floor, anyway). We have some new hopes, and new dreams, and new possibilities.

And new anxieties.

Did I mention I don't like roller-coasters anymore?

Sunday, December 23, 2012

Happy 12th Anniversary of my 29th Birthday

My poor mom was due at Thanksgiving.

Sunday, December 16, 2012

Tangled Emotions

On Facebook, the prompt is now, "What's on your mind?"

As I sit here, staring at what the school is telling me is a behavior plan, but which says nothing about what anyone will do if Joey melts down in school again- a high likelihood come the spring; as I think about the day Joey stepped out in front of a garbage truck, and what game plan I have in my head should there be a repeat (and all the echoes of people saying 'why can't you get over that already?'- with words, eyes, and quiet shakes of the head), and think about those beautiful lives lost in Connecticut this week (not just the kids, but also those teachers and admin who gave everything for those kids), I think about... this. I think about the possibilities of where we could be going, if I can't get the school program to function. I think about the needs Joey has, and the possible avenues he could take, especially if we can't get the depression in hand and the frustration under wraps.

What's on my mind? The other day, when Joey imagined that one his grandfathers died. The pain he felt, as if really had happened- and the breakdown he had in school over his inability to cope with raw emotion... even in an imaginary circumstance. That's on my mind.

The long road ahead to get the school to understand that inclusion isn't working for Joey. He's being lost- socially, academically, he's drowning. The little progress he makes still leaves him lagging behind at an alarming rate- even as he steps forward, he is falling farther and farther behind. We've never recovered from our major third grade regression. I have to make sure I have every scrap of paper in order, ready to go. I'm not doing this one alone. How am I going to pay a lawyer? No clue. But it must be done. That's on my mind.

Having to admit to myself that inclusion isn't working for Joey. Sitting here thinking about it, I could just cry. We want him to be able to function in the world. We had been doing really well with it. But then third grade came, and it was sold to us as "well, things are different." Guess what? In middle school, they are different again. To have to sit here and say, "This environment is not supportive enough. He isn't safe there." I don't think many people understand how hard that is. What makes it harder is knowing those kids are at least used to him. There is some social value to having those kids learn beside Joey. There is also the future to think of- Joey's social future, after being pulled out of school. That's on my mind.

It's a tangle- the kind that steals your sleep and leaves a hollow in your chest.

Wednesday, December 12, 2012

No, That Didn't Go Well.

Today's IEP meeting featured the FBA. Yeah, acronyms suck. So did the meeting.

When we set up this meeting, I was unhappy about the idea that we were getting together at 2pm to "look at the data and decide what to do." I asked for the data and a draft of what they thought they should do before the meeting, but that didn't happen. So I had no idea what the data would look like, had no time to process it, and was unable to have my own professionals look over it and discuss it so I could be a useful team member. We actually spent a lot of time talking about how the behaviors that originally set al this in motion have mostly ceased. You know, the threatening language, cussing, and self-deprecation. In fact, during their 2 weeks of data, he had mostly "good days."

And so the meeting was a waste of time.

The only thing I could get across to anybody was the need to help Joey communicate when he is on the brink of being overwhelmed, because you can't tell by looking at him. So they agreed for him to have a notebook with his well-being check-in color and number scale, and have him do regular checks of where he is on the scale, and possibly talk about why (so he can connect emotions to things that happen and proper language). The idea is that this will help him process and communicate, to avoid the behaviors.


Most of the meeting was filling out a form about these behaviors and lack of data, which can mostly be summed up as "Joey is autistic." To the point they'd say something and I wanted to say, "NUH! He's AUTISTIC!!!" or write "Look! My autism is showing!" I mean, seriously, just write "autistic" across the paper and be done with it.

And what is the plan should he have another meltdown incident?

Oh, well, um... that wasn't discussed.

I had no urges to throttle anyone. I just felt like no one there who understood Joey was being heard, and those who didn't made their cluelessness clear. Nothing was done to actually help Joey should he again be in crisis.

It is never a good thing to be walking out of an IEP/FBA meeting thinking, I need a lawyer.

Friday, December 07, 2012

Weighing the Options

You may have noticed we've been having a lot of dips in the roller-coaster lately. In fact, the past three years of Joey's schooling have not been the rosy, well-progessing days of the three years before that. Even with teacher we think are excellent in the last two years, we have lost ground.

It really struck home the other day, when his current Awesome Teacher, Ms. F, was praising gained ground. Joey is now independently walking from the bus to his classroom in the morning. Woo-hoo! Independence! Yay!

But wait. He was doing that in second grade. We're just now regaining skills we had in second grade?

I haven't said anything yet. I need to chew on that some. We're just now getting back to some of the independence he had in second grade. Some. Not all.

Yes, we have had some skills move forward. And he's grown up some. Not at the pace of his peers, but some. And yet, there are still these moments, whole days, whole weeks, when I feel like we're trying to regain lost ground. We had it. Then we lost it.

This fall, we may have the opportunity to get Joey into a new school- one that seems designed just for him. Academics in the morning, tailored to the child's skills (so if Joey wants to go gangbusters in math, he can! and if he needs help in reading, he can get that, too!). Afternoons dedicated to movement, therapies, and specialized education (social skills, extra speech and language work, fine motor work, etc). Movement and sensory breaks throughout the day. Classrooms of 5 students, with one teacher and two paras. Plus full-day OT, speech, and vision therapists on site (and perhaps PT, depending on who the students are). All of these people would be trained not only in special education, and not just in autism, but specifically in Joey.

Sounds like a dream come true, doesn't it?

But here are the cons.

We've been lucky to be in a small school system, and many of Joey's classmates have gotten used to him. They know him. They can at least tolerate his quirks, even if it is more in a mother-hen fashion than a friend fashion. Interaction with non-disabled peers would plummet, restricted to activities I could arrange after school.

I have an answer for this one, though. We are entering middle school. Much of that tolerance is about to evaporate in the world of the selfish, nasty pre-teen hormone rush. We are already seeing bullying and nastiness; it is about to get serious. This may be the time to rethink inclusion, which is already looking shaky. It is no longer a safe space for Joey to learn to interact with non-disabled peers, or for them to learn to interact with him. It is about to become even less so. This may be the moment to go ahead and give him more controlled environments to practice the skills he is being taught, and spend more energy on carefully controlling the "on the job" interactions he has to deal with- after all, it isn't just his classmates that are about to hit Hormone Central.

The other con is the price tag. At $40K/year (which is a bargain, by the way), we have to put together the data that supports our observations: that as we move away from the model we were using, and that the new school will use(with morning academics and afternoon pragmatics and highly trained staff on site at all times), Joey's ability to access both his academic and his functional curricula plummets. When he is in those reg-ed math classes, he's supposed to be being instructed how to function in those classes; yet it seems that the school's idea is to just toss him in there and hope he "picks it up." He needs a lifeguard to help him practice his social skills, but his para is green from school and untrained. And note how little I just said about learning math. We've seen his reading go from being at "above 6th grade level" in second grade to "below basic" in fourth. No one seems to be able to even tell me what progress he's made in reading. I've seen none. In fact, I've seen major regression- he won't read for me. He is again tolerating me reading in the room, but is not paying any attention to what I am saying/reading.

I worry that putting this down in black and white will somehow be considered a reflection of the teachers he has. What I feel is that we do have the A-team; these are the best teachers this school has to offer. And here we are, even doing our best and working our hardest. This isn't working for Joey. He's falling behind more and more, even as he moves forward, because everyone else is not only ahead of him, but they are moving faster. Yet his strengths get tossed to the wayside and left to stagnate, unchallenged or minimally challenged. He already passed the end-of-year test for this grade- two years ago. Has he moved forward at all?

So it is time to start gearing up for battle. This is going to be a tough, nasty one, which could be all for naught if we can't 14 others to win the battle, too. 15 students are needed to open. What a disaster it would prove if I can prove the schools are failing, yet have no where for him to go. Burned bridges are tough to recross.

Monday, December 03, 2012

Mean People Suck.

Things I wish people would think about before opening their mouths (or keyboards).

1. You can't just walk up to your family doctor, say, "I think my kid has XYZ", and walk out with a diagnosis. This is true of the flu, of a broken bone, or even an ear infection. It is also true of diagnoses such as autism and ADHD.

2. You can't just walk into a school and demand your child have an IEP, and walk away with one. even when something is wrong, it can be very difficult to get the school to acknowledge that it has an impact on your child's education.

3. Just because you have a diagnosis does not automatically qualify you for an IEP.

4. Not all children with autism or ADHD take medications.

5. Most of the kids with autism or ADHD who do take medications are on anxiety medications. Think hard about what you take anxiety medications for when you do not have autism or ADHD. Guess what? That is what kids with autism or ADHD are taking them for. Think hard about that.

6. Kids with autism or ADHD are not lazy, crazy, or stupid. You can't beat the autism or ADHD out of them.

7. Not all kids with autism get a government check.

8. Kids with disabilities have the same rights to life, liberty, and happiness as everybody else. In this country, that includes education- even if you think they are "uneducate-able". They are still human beings, and they are still members of your community.

9. Using foul language and ugly words just emphasizes that you are a mean, ignorant, ugly person.

10. Saying/typing any of the above, and then justifying it by saying you work with special needs kids of any kind, have a medical degree of any kind, or have an educational degree or experience of any kind, also emphasizes that you are mean and ignorant. It also makes me want to track down who you are, to make sure your degrees and licenses are reviewed, and to be sure you do not really work in direct contact with any vulnerable population of any kind.

Because, seriously? Mean people suck. I wish we could put them in a nice social skills class, so they would have a chance to become constructive and positive members of society, rather than blood- and soul-sucking leeches.

Sunday, December 02, 2012

Joy to the World

Joey and I went to the holiday parade! We get there a bit early to get a good parking spot, and hang out to see what is new for the holidays. There was also a craft fair nearby, so we wandered over there for a while. It was in my old elementary school, so I got to show him where I had classes and things. I hadn't been in the building in eons, so that was kind of surreal, but it was just as I remembered it.

This year's theme was something about tropical or Hawaiian Christmas, which is really weird, too, since we aren't tropical. And I hate tropical theme Christmas stuff. The point of a parade is to get us into the spirit, and it is cold here, so having people wear hula costumes and put up palm trees- it just doesn't do it. Fortunately, there were plenty of non-float stuff to see.

The other weird thing they do now is have all the high school bands just combine whomever wants to march in the parade into one band- so there is only one band. It is a shame, because parade bands are awesome. Also, hey, we pay for their uniforms and stuff, and it is a marching band, so come march. We all marched separately when I was young, and it was part of the deal of being in the marching band. Buy long underwear and know you are going to be in the band. We also memorized our music. And though we only had 28 horns at my school, we still rocked, even in parades.

Joey loved it all the same. He loves baton twirlers and bands and tractors and baton twirlers and ladies in costumes and trucks and baton twirlers...

About halfway through, he started singing Christmas carols at the top of his lungs. He even got some of the younger ones around him to join in to Jingle Bells. His favorite, however, is Joy to the World.

As in, Jeremiah was a bullfrog.

Everyone around us was in hysterics. That's my boy.

He did manage to catch some candy, but it was the folks giving out pencils that really made him grin. I think if I filled his stocking with sticks, he would be the happiest kid on earth. Pencils make great sticks.

I also liked the folks who were giving out paper bags they had decorated- so kids could have a bag for their candy and pencils.

One had to love parades, especially since Joey loves them, too. He was a little more reluctant this year, with the call of the Wii, but having some 1:1 MomTime turned out to be not such a bad thing, after all. Especially when Mom plays Pier Pressure while waiting for the next part of the parade to go by. And sings with you.

Merry Christmas!!!

Thursday, November 22, 2012

Happy Thanksgiving

Turkey, by Mansur. For Emperor Jahangir (r. 1605-27). India.

Tuesday, November 20, 2012

Bus Bullies: The Saga Continues

Yeah, I'm not happy about it, either. We're getting to the end of our rope, fast. Apparently, the Gruesome Threesome are still causing trouble, and it was getting bad again- Andy was being tripped, pushed, and told ugly things, his friends insulted, the works of just nasty bus bullying. I emailed the principal that it was continuing. Then when Andy came home yesterday in tears, I called.

So how was it handled? Technically, I have no idea. I have no note from the school, no phone call, nothing.

But according to my son, they moved him to the back of the bus. Not the bullies- my son. He was moved away from his friends, who he now sees as unprotected, and to the back of the bus, with kids he doesn't really know.

Is it me, or did they just punish my child for being bullied?


Andy certainly sees it that way. He has to readjust to new bus companions. He is worried about his friends. He wants to know what he did wrong.

He did nothing wrong. In fact, he is doing everything he is being taught to do- stand up for himself and his friends, report the incidents to an adult, when the bus driver did nothing, he came to me and to his principal. He is talking about it at social skills group and letting people know there is a problem.

He is learning that the bullying doesn't stop, and he is the one who gets punished. On top of that, the bullies are having their behavior reinforced, by removing the kid who was standing up to them.

I'm sorry, but after this long, those other kids need to be removed from that bus. I don't care what alternate arrangements are made to get them home- that is none of my business. But punishing my child for their behavior is not the answer.

Thursday, November 15, 2012

Our Morning at Kennedy Krieger

Well, we finally did it: we finally got an appointment at Kennedy Krieger! We were up there to check out some issues Joey has been having, but also to get our foot into the door for support as he gets older. We could certainly have gone back to Kluge, but various issues, including the current upheaval at the center, made it seem not a good idea for the long haul. And we are now hitting that long haul.

The Kennedy Krieger building is impressive, with an airy reception and waiting area that has an aquarium and a playroom as well as a cafe upstairs. We were scooted in upon arrival (with free valet parking- yay!), registered in a jiffy, and soon munching bagels and waiting to be called. Everyone was totally nice to Joey, letting him start up conversations in his way, responding to him with smiles and comments and answers to encourage him in his interactions. Joey was happy as a little clam.

Dr. Rubenstein was also awesome. We went through the entirety of Joey's tale, in detail, starting with him being a non-verbal two-year-old. The tale of the First Speech Therapist, getting him into school, getting him into therapies, getting his diagnosis, etc. etc. etc. Joey was diagnosed with autism by Dr. James Blackman at Kluge when Joey was about two and a half- in November, no less. The name apparently holds some weight, because upon mentioning this fact, the conversation shifted into a different gear. It made me wonder how many people go in to him with a lot of assumptions but no actual facts... or evaluations. I also think Joey was his usual surprising self. He does not present the way people expect an autistic child to present, especially if you have only known him for five minutes. As Dr. Blackman once said, Joey has a lot of classic autism symptoms, but not a classic combination.

We got into sketching our current issues, and Dr. Rubenstein was definitely thorough and thoughtful, considering what we were saying and seeing, and what he could see for himself. In the end, we got no answers today, but an acknowledgement that 1. there is a problem and 2. we are going to try to figure out what it is, so we can help Joey. Also, we're going back to see the nutritionist. Let's see if we can get Joey eating more vegetables. ;)

I'm always anxious when trying to sketch out our experiences to doctors. You never know what they are going to say, or think, or even if they are going to believe you. Especially when they have Joey in front of them, being his happy little self, descriptions of problems and meltdowns seem so... bizarre. Unlikely. Out of character. Strange. Besides, I seem more and more surrounded by snake oil, and finding it more and more offensive... and more and more afraid of falling into the snake oil trap. When you start talking about Andy as well, and his issues, I often catch those sidelong looks... after all, these people don't know me. Am I serious and sincere, or a crazy lady who over-diagnoses her children, possibly to drug them into oblivion or get attention? On top of that, am I going to prove to be some batty woman who follows the latest in humbug and snake oil? Some of those folks who are into the quackery can be very... insistent. Every virulent. Dr. Rubenstein clearly had plenty of these types to contend with, from his reaction to mentioning a real doctor giving us our original diagnosis and to the therapies we have been providing. When he got to the part where he was explaining he wasn't going to be prescribing us any medicines, you could see the eggshells beneath his feet. It definitely made me wonder how many parents demand pills.

We were very pleased, and look forward to getting the clues together and solving our current little mystery.

Wednesday, November 14, 2012

42 Strikes Again

We arrive at Joey's OT, but the other child is a little late. To calm himself and fill the time, of course Joey decides to become Super Luigi, running about the office. In the meantime, Andy is trying to hunt zombies with his magic invisible zombie bullets (since we aren't allowed to have darts in our nerf guns unless we are in our own back yard). In assessing the situation, I make sure the boys have the equipment they need. Does Andy need a gun strap? Does Joey need his cape?

What, you thought I would have them sit int eh waiting room or something? They just got out of school! This is their usual scootering time! Get those wiggles OUT!

I cleaned the car out this morning in preparation for our big trip up to Kennedy Krieger in the morning, so I am down to basic car supplies. The cape got taken in. Fortunately, part of my supply kit is a towel. I tie it under his chin and off her goes.

"Wow, you have a towel in your car?" the therapist asks, amazed.

"Of course I do," I reply. "Don't panic. And never forget your towel."

Monday, November 12, 2012

Happy Birthday, Beau

Two people I miss something awful: my brother, Beau, and my Pop Pop Conway.

Thursday, November 08, 2012

More Fuzzy Tummy

My mom's cat, Doughnut. He likes to flop over and have people rub his tummy.

After The Battle: Are We Losing the War?

I know some folks find the whole warrior metaphor ugly and inappropriate- but I'm not battling autism. I'm battling the need for Joey's autism to be accepted, understood, and properly supported in school. We have been bitterly reminded of the consequences of losing that battle lately. Joey cannot afford for me to fail, and it becomes increasingly clear that other folks trying to help him have limited capacity to fight, for a variety of reasons (including, unfortunately, job security).

The good news is that we have been mostly blessed with awesome teachers, not just now, but all along the way. A school is only as good as the teacher in front of you. Unfortunately, we are also stuck being something of a pioneer through our system- insisting on services, having a child with Joey's communication issues and social difficulties in "mainstream" classrooms, and even having a child like Joey who doesn't fit what people expect of an autistic child- these things work both for and (mostly) against us. We have teachers who love our Joey and are willing to try. That willingness has proven to be essential and vital to Joey's success, but also reveals basic discrepancies in training, understanding, and experience in many situations. Like the general population, school faculty far too often have limited exposure to and understanding of autism. And then they find a child like Joey, and it completely blows all of their basic training on the subject out of the water.

People forget the Joey has disabilities of a nature that are not readily apparent until need for support becomes dire. Or they miss the meaning of what Joey is trying to do and say. It makes for misunderstanding, surprise, and broad-siding that can have drastic consequences.

Allow me to conjure you an example.

One of the exercises at school is to give the children a "prompt" and have them write about it. Some weeks ago, the "prompt" was about Your Saddest Moment. We can discuss elsewhere why this might be a challenging and inappropriate writing prompt to present to my son, especially in the face of the difficulties we are having with him and his emotional well-being and coping, but hey, I wasn't there. To get the children started, the teacher offered her own example: her fish died.

Joey had a fish, and it died. He often perseverates on this in bursts, and has a great deal of trouble processing the idea of death. In fact, I can say with some certainly that this assignment was likely about three weeks ago, when Joey came home with perseverations on historical figures and the birth and death dates, their means of death, and then started looking up obituaries of random people on the internet.

So her fish died. Joey has a fish that died, and it made him feel sad. I bet the class talked a bit about the death of the fish and why it made the teacher sad.

Now she is surprised that he sometimes come into her room and tries to open up conversation with "I'm sorry your fish died."

The other day, when he did this, she attempted to seize the moment to show Joey why this might not be a good way to open a conversation. She reminded him that the subject made her feel sad, and asked if he was wanting her to feel sad.

His response? "Well, you can just kill me, then."

He picked up on the fact that the teacher was trying to tell him he had made a mistake, and that the mistake had hurt her feelings. HIs attempt to connect and capitalize on common ground had failed. His instant response was to be sad himself, and try to make it better by suggesting a phrase that he associated with being sad and feeling depressed: "Kill me now."

In shock at his words, she responded by arguing with him- she wasn't going to do that, etc. And so he moved on to a new shock phrase, to get her attention and make her stop... and unfortunately, that phrase was, with a smile of sorts still upon his face and a conversational tone, "Then I'll just kill you."

You can see where this might get ugly.

Fortunately, the teacher did not over-react and take this as a real and immanent threat. However, it was also fairly clear that she does not speak Joey, and had no idea how the conversation had gotten to that point. She had no clue that she was teetering on the edge, and playing with fire- that such a response, even with his apparent calm, was a huge bonfire signal of "DANGER, WILL ROBINSON! DANGER! ALERT! ALERT!"

I assume at that point it was time to start the day and the natural distraction of having to attend to the schedule and daily tasks averted disaster, since the meeting was the first I had heard of this incident. That such an exchange might have been important enough to report to me and to the other staff immediately was something that seems overlooked even in the midst of the meeting.

Yes, we are starting on an FBA, which will take at least a month to complete, and who knows what might happen in that (very busy with schedule changes) month. But somehow, it is incidents like these that ring in my head with the potential for disaster. It is stark reminder that I could win every single battle- go in and throw fits and stomp my feet and get the school to do study after study and make plan after plan- and still lose this war to their basic and profound ignorance and lack of training, understanding, and experience. And BIP only works if it is just right, and followed with understanding and acceptance. And I have no magic wand to wave and get people the experience and exposure they need, right now.


I am considering closing down some other blogs I have started elsewhere, but rarely get to write on, and just making them pages here- My Garden Gate, Cooking for the Kids, etc. What do you think? Would you like to see some other stuff I write about occasionally?

Wednesday, November 07, 2012

Warm Fuzzy

We all need more warm, fuzzy tummies in our lives this time of year. Especially after IEP/FBA meetings.

Preparing for Battle, Part Two.

Forty minutes. Then the battle commences.

I have my powerpoint ready. I have my list of issues. I have my list of goals.

I am ready to fight for respect for my son.

I'll see you on the other side.

Monday, November 05, 2012

Gearing Up For Battle

I don't expect it to be a long meeting. Obviously, neither do they, as they have slated it for 2pm knowing I have to be home for two kids getting off a bus at 3:30. It won't take long.

We go in to address the recent behaviors that have erupted, the dramatic meltdowns that, to me, is evidence of a serious support issue. After all, Joey isn't learning much when he is screaming obscenities and exploding from frustration. Well, not much about math or history, anyway.

My goal tomorrow is to crunch some data. I want to be ready with some nice graphics when I get asked if I might be wrong, if this might really be a discipline issue. He is getting older, after all. Puberty is upon us, after all. Perhaps...

And before I smack someone, I am going to come up with my nice little graphic. The one that shows him reading on a 6th grade level in second grade, compared to reading below grade level in third, fourth, and fifth grades. The one showing him able to write in full sentences in kindergarden, but now unable to pass a reading SOL* test- in fact, scoring "below basic." The graphic showing his IEP goals being met, and what they were, and his new goals- from being nearly independent in regular classrooms, to returning to the need for a para in every setting.

And then I'm going to have printouts. Each and every powerpoint I have made for these people, starting with the one I made for the third grade IEP. And we're going to take a look at all the times I told them about the red flags for meltdown, and then go through the documentation for the latest incident. Then a little graphic with those red flags actually IN RED- and at what point in the narrative they each appeared. A nice correspondence to the interventions that should have occurred at each of these flags, versus what was actually done, might not be amiss.

A nice graphic about the successful models of support for Joey, versus the time we have moved away from that model, would also be good.

I don't expect to sleep at all tomorrow night. Might not get much tonight, either. Too much work to do.

It is time like these that I am reminded of everyone who told me I ought to be a lawyer. Building a case in clear terms and overwhelming evidence, that is what I have learned to do as an academic. Prep to respond to critique, have the evidence clear and connected, keep it all clear, coherent, and cohesive.

And when my child's life is on the line, don't back down.

*These are our state's standardized tests, "Standards of Learning."

Sunday, November 04, 2012

If I Were King

As the election looms near, I start working out what battles I will fighting, whether one candidate wins or the other. And I get to sit here and whine about it, because I vote.

But what if I were voted in? What would I do? It is a game that is kind of like “what if I won the lottery?” Because I am not a multi-millionaire/billionaire, and so will never be able to run for president, I can play all I want. There something sad in the idea that you have to be wealthy to be given a chance to run the country, but that's a discussion for another time. After I win the lottery.

So here is what I would do.

I would have a huge census project completed, pronto. Not of citizens- of the government itself. What does each office do? What does each worker do? What is the job description, and how does that compare to what the person actually does? How much money does each program have, and how much of that money ends up back in the hands of citizens? An in what form (how much is actual cash, how much is service, how much is infrastructure?) Which law dictates each program, office, position? A nice database would make the information quickly available and analyze-able.

With this information, the goal would be to simplify programs so that access to services would be streamlined. We probably would not lose many actual workers in this streamlining, but the rules for accessing government and programs would be clarified and simplified. Instead of having to beg for support from five different agencies in three different departments to try to find services and support for your child or your aging parent or your farm, you would know the one office, which could determine your need and meet it. The time savings all around would be huge- and time is money.

Next, we have to decide what services the government should be offering. That is a more difficult thing, because different people hold different views of the role of government. Having studied many ancient and modern cultures, and see which ones were successful, I would suggest that government’s roles are these:
Common defense of citizens. This includes defense against invasion from others countries, but also defense from disaster, crime, etc.
Infrastructure. Roads, schools, communications, etc. Make sure you can get information, people, and resources where you need it, when you need it.
Standards and commonalities. This includes things like money- a dollar in Maine is a dollar in California; measurements, definitions, and quality.
Social care. We all have ups and downs. Every successful society in the world had means for ensuring its citizens were healthy, fed, and housed. That way, they could work towards other things, like commerce, self-improvement, and progress. Also, since I am of the view that we are all in this together and none of us get out alive, a government should ensure care of its vulnerable citizens through education, health care, food assistance, and housing assistance.

Programs would then be considered in light of these roles. Programs and benefits f programs would be for citizens. Programs and services for non-citizens can be paid for privately- a government is set up to protect and serve its citizens.

The entire tax system would be overhauled. The federal taxes would include current “payroll tax” (supporting Medicare and Social Security) and the income tax, and custom duties/tariffs. I wouldn’t have an estate tax, because that money had already been taxed- it isn’t really income for the family.
The payroll tax would not be capped. I believe that is currently at 13.3%, capped at the first $106K. Let’s put it at 10%, but no cap.
The rest of the personal income tax would also be flat-rate. Everyone would pay the same rate, period, on income, period. I would have to have more data on the needs of federal programs to know what that rate would be. Let’s say, for fun, it would… 12%. That would means everyone would be at an absolute rate of about 22%. Yes, some folks would see a tax increase with that, but most of those folks would be the ones used to getting out of paying any tax at all, because of fancy tax accountant deductions.
Corporation income tax would allow for losses for be deducted. This would otherwise also be a flat rate. Let’s say, 15%. Again, for companies used to taking advantage of lots of deductions, their taxes might go up. Also, it would be for income. You operate in this country, you pay. I don’t care that your factory is in Tahiti, because you are being taxed on your income. All income must be accounted for, including foreign income (as a private citizen, if I make money in France, I still have to pay US taxes on it).

In this new world, immigration would be different, too. There would be very clear guidelines about how to gain citizenship. They would be very simple- learn the history of the country, obey the laws of the country, learn the language of the country, etc. In other words, take the time and effort to become a citizen. Then you get a chance to actually become one. When I was growing up, I was taught this process took 7 years- about the time to get through, say, a graduate program. That sounds about right. Persons who apply to be on this track to citizenship will be provided certain benefits of citizenship in emergency situations (ie, emergency services, etc). Children of those registered as tracking to citizenship would be permitted services of citizens (ie, they could attend public school) if the family chooses to also pay citizen taxes during their immigration period. At the end of the seven years, with the simple and clear goals met, these people would be considered citizens, and go through the brief ceremony of swearing their new allegiance, etc. Anyone born in this country remains a citizen of this country. In case of marriage, the newlywed may choose American citizenship, provided they immediately pay citizen taxes, take the allegiance pledge, and can otherwise function as a citizen.

Yeah, I know, down and dirty, and too many details left blank, right? But hey, I’m also not likely to become the President of the United States any time soon. I’ve got plenty of time to think out a lot of unaddressed issues and possible scenarios. But if I ran the zoo, it would definitely not take a week for helicopters to bring aid to hurricane-stricken areas of our country, when we had a week’s notice of an impending hurricane. Babies in need of medical care to survive would get it, period. So would you, as you get older, and need services and care. Bridges would not be crumbling, anywhere in our borders. And all citizens would have access to free and appropriate public education- and “appropriate” would never, ever be synonymous with “minimal.”

Thursday, November 01, 2012

Making Plans in the Shadow of the IEP

So we have an IEP next week to "address" Joey's recent ISS and the issues around it. In other words, a new FBA and BIP, lots of nodding, probably some Scolding of the Mom for being a helicopter parent who won't stand for her child being "disciplined" and for spoiling him, some smiles and nods up front while heads are shaken behind my back, some genuine attempts to help Joey frustrated by attitudes and misunderstandings and some outright sabotage. I'll witness teachers trying to voice realities and being shot down by admin and "support personnel" who have little or not real contact with or understanding of Joey. There will be desires to scream, throttle, and cry. Just the way I want to spend an afternoon. Perhaps I should bring cake.

In the meantime, I was in my mom's office today. We haven't been in there much lately, as the contracting we do is between-jobs (we finished one project, and are awaiting the next project to start up... provided the right person is elected president and continues to fund the project at all. Yay.) The office is actually quite large, as we used to have several folks working out of it. Now we get a break on the rent, since I think the building manager breaks out in a cold sweat with thought of trying to re-rent it. Besides, we're quiet, we pay on time, and right now, we aren't even really there. When we do appear, we are pleasant and have plenty of new gossip to share in the main office. Perfect tenants.

I have a room converted for my new Etsy business, we still have our main office, I have one room as storage for for stuff from the old shop and for packaging and shipping supplies. We have a front room sublet to another little business that is also quiet and rarely present. There is one room left over, which was originally JoeyAndyDad's office, and then it was supposed to become my office- but Mom and I figured out we worked better when we were in the same room. So right now, it is filled with the computer modem-router-stuff-I-have-no-idea-what-it-is-but-it-blinks, my desk with a scanner for scanning in our old family photos, and... stuff. Old computer books. Old merchandise from the old shop that never sold. Some old display pieces that I don't even know why we moved. Some spare chairs. Six tubs of toys from the boys' rooms that need to be gone through and thinned. You get the idea. A room filled with hoarded crap.

I have big plans for this room.

Once I get the crap cleared out and the blinky boxes in some kind of ordered cabinet, Ill have a nice, clear room, of reasonable size- bigger than the rooms at Joey's speech therapist's office, and they get all sorts of stuff done in there, and the materials to do it with stored in there. It would make a lovely homeschool room. Should we, you know, need one.

I could move the desk to the window, so we'd have space to spread out to do larger projects and games. I could get a smaller table area together for seatwork. Perhaps a nice comfortable area for a computer, and a reading corner. I could set up a bookshelf for the latest books on our latest learning themes, and have a small cabinet for supplies and materials. I could fill one wall with bulletin board, to post up our latest work, and maybe a board about what we were learning. I have plenty of friends who also homeschool, so finding a group wouldn't be too hard. We'd still have speech therapy and occupational therapy. Taking Joey places 1:1 would be mostly do-able. With a spare set of hands, I would probably be able to bring Andy in on it, too- though he'd probably be happier at school, where he has friends and a life of his own that is pretty successful, overall.

Funding this project would be the hardest part. I would obviously have to give up work hours, perhaps even a whole job, because not only would have Joey to attend to all the time, but I would need all the time I could lay hands on to teach him. Speech and OT still must be paid for, perhaps even more so, as we might need to increase the time at private practices to make up for lost school services. Plus, I would need more supplies and resources for teaching.

If I can get this room cleared out, I have this option, whatever sacrifices would need to be made to choose this path. In the shadow of a desperate IEP, it would be an anchor to keep despair at bay. To be able to speak from a place of strength and choice is far better than a place of panic and resignation. To be able to stand here and say, "My child will get what he needs in order to access his education" knowing that he will not be sacrificed, that may be what we need to get through a meeting without, you know, throttling anyone.

Wednesday, October 31, 2012

Best. Halloween. EVER.

This afternoon was the school parade. I dressed up and headed over to see my Squirtle and Luigi show off their costumes. They were adorable. Joey was especially cute- he almost walked by me, but recognized me at the last minute... "Mommy! You're a witch!"

In fact, he had no clue I was going to be a witch, because when he left for school, I had no costume. I got our porch ready in record time, and realized I had time to make one, and a need to go to the fabric store to get Joey a mustache. A few yards of different sparkly webby fabrics and a couple hours later, and bingo! Witch costume to go with the awesome hat my mom bought me.

We've found a little niche in our neighborhood. A family around the corner has kids a little younger than mine, but in terms of interests and energy, they are a total match. And they LOVE Joey and Andy.

The mom is Italian, and so she is discovering American holidays. She did a great job with decorations and dressing up, and getting into the holiday spirit.

Better yet, they decided to have a little Halloween party. Her kids came around the corner to invite my kids! They were so excited- their first Halloween party! The excitement of having friends around the corner who make effort to invite them over and get excited to see them was already the treat of the year- but to be invited to a real neighborhood Halloween party was the best.

And the kids enjoyed it, too.

Pizza, cake, and offers of beer (I didn't take the beer because we still have trick-or-treating ahead of us) is an amazing thing. Seriously.

Then it came time to go out and raid the neighbors for candy. Andy realized he was going to get to go with his friends, as a group, and he was beside himself with happiness. Adults stationed up and down the street, plus two adults with the group, plus me... heaven opened and shined upon our town. Even better, as Joey started to lag, one of the adults turned and said, "Don't worry, you guys take your time, I've got the Squirtle!" Andy didn't have to chomp at the bit waiting for Joey, he could just go with his friends.

See, this family, though their kids are not special needs? They get it. They understand that kids have different needs and stages and development, and that you do what is needful for each one. And they think Andy is awesome. And they think Joey is awesome. And what is super awesome, is that they are absolutely right.

And they get it not just with my kids, but all the families of the neighborhood. They are glad to have everybody tumble into their house and enjoy themselves, and be together, and be themselves. They wouldn't have it any other way.

So Joey and I got to do what Joey needed- methodical house-to-house, with prompts as needed and a few moments to talk with each person. Joey loves to tell each person he visits something- commenting on their pumpkins, or that Halloween is fun, or that Luigi is Mario's younger but taller brother, or... each time, not just "thanks, bye!" but an attempt to connect. And thankfully, everyone in the neighborhood has learned to just take it in stride. Even the new folks- college kids that change every year, or new houses we hit- they all were patient and happy to meet Joey. Not a single one tried to dismiss him or hurry him off their porch this year. Not. One.

How awesome is that?

And when Joey got tired, I walked him home to Dad and Grandma, and then went back to get Andy from the house around the corner. WE stayed and let him play for a few minutes, and I talked with the adults for those few minutes. You know, adults. Grown-ups. With grown-up conversation. It was awesome.

So this definitely wins best Halloween ever.

I think the kids enjoyed it, too.

Tuesday, October 30, 2012

We Survived Sandy

We've been busy preparing for Sandy, getting together a response letter to Joey's principal, and otherwise trying to stop running in circles like a beaver in a lumberyard. Oh, and it is Halloween. Yay!

We survived with our power intact. Sending prayers to those north of us who were not so fortunate.

Saturday, October 27, 2012


I am so tired sometimes. I look at what is happening in Joey's world, and the issues being created by the adults in it- or simply being left unaddressed- and it makes me tired. No wonder Joey is exhausted. The constant anxiety in which he lives his life, and the ways people react when he expresses it, would be enough to leave most people ready to... well, jump in front of a car. Or run screaming into the night. We shouldn't be surprised when he attempts to do just that, really. Sad and angry, but not surprised.

Let's take yesterday for an example. I'll start in the immediate middle of the story- Joey returns to his mainstream classroom and finds a good friend has been assigned "silent lunch"- that is, he will not be able to sit with them at lunch, and he understands they are being punished. Despite the friend's assurances that this punishment is merited, this causes Joey serious anxiety.

The expected response in society is that the child "stew." That is, they might be angry about the situation, but they keep it to themselves. This likely makes the child appear peevish or grumpy, but they keep their thoughts to themselves, letting the anger rattle about in their heads without coming out their mouths. Interestingly, we all too often go on to berate a child in this situation for being grumpy and irritable, instead of giving them time and support to work through the emotions for which they have no available outlet without getting into even more "trouble." Should the real anger and frustration come out, we often punish the unexpected behavior to silence the child.

Joey does not have this coping mechanism. We have taught him- gone to great pains to teach him- to speak. Additionally, being autistic, his use of language is different- for Joey, he attaches emotions to words and phrases, and so when those feelings arise, those words come out of his mouth. Unfortunately, discomfort, embarrassment, and anger have been attached to words and phrases that make him uncomfortable, embarrassed, and angry, and those words are not ones we use in polite company. Taken with a 10-year-old's increased emotional load and anxiety due to normal development and the onset of puberty, you can imagine that Joey might get quickly overloaded in this situation, and revert to fight-flight mode.

We have strategies in place to keep him safe from flight. We have people to block doors, places for him to go, signs to remind him when he enters blind panic or rage to stop and give him that breath of time to recover enough to be functional, even if minimally so. Enough to stop the flight.

Apparently, we have not done such a good job if his brain decides to go with fight.

Joey became increasingly verbally abusive, and I am actually surprised he did not become physically abusive. Something was different, it was wrong, it was a horrible ugly rent in the fabric of the universe for him. He got angry, and he dealt with that anger in a way that society views as unexpected- he communicated it verbally. And loudly. And without appropriate and proper intervention to help him work through it, he spiraled out of control, and into a dramatic meltdown. Probably about a level 4, since there was minimal physical damage. But enough that I think the teacher freaked out a bit, never having seen a real meltdown before. There was no one in the school with solid autism experience or understanding of behavioral responses to intervene and support either Joey or his teacher.

He finally returned to his self-contained classroom, where he started to lash out at the adult before him- his teacher. And she reminded him- prompted him- that she would not have it, and that his reaction was unexpected. The short walk to the classroom, and being confronted with a new person, likely gave him that half a breath he needed to start pulling out of the anxiety response- he remembered himself, and stopped. Unfortunately, this was used as evidence that he could stop- if not in the official reporting of the incidence, certainly in the minds of the adults dealing with the situation.

And so the mainstream teacher wrote him up. And the admin awarded him the glorious consequence of an in-school half-day suspension.

And now comes the kicker. See, this is the middle of the story. This was the trigger event. This was the behavior and the consequence, but I haven't given you the whole antecedent.

When I spoke with the teacher, I asked about his day. I learned two important things:
1. His schedule had been altered to include a morning activity of writing. Although he did well with the activity, and seemed fine, it was a schedule change. It was unexpected. But perhaps we can assume this was not feeding into the problem...
2. But being teased at lunch probably should not be ignored. Most of Joey's classmates are now very, very familiar with him, but there is a new child who is still learning. Apparently, New Kid somehow goaded Joey into bolting from the cafeteria at lunch. It is unclear whether this was deliberate, or whether Joey's lack of filters meant he overheard something the child was unaware Joey would act upon or even hear, I don't know. But the result was that Joey understood he was being goaded into leaving, and he left. Joey knows when he is being targeted and teased. Imagine how you would feel.

Connecting discomfort to the lunch period, he then went back to class and found that a comforting person would not be having lunch with him. You know an uncomfortable situation is looming, and now you are shown evidence that something that makes it bearable is being taken from you. How would you feel? And how would you react? I'll bet "uncomfortable", "anxious", and even "angry" would be in that list, my friends.

Now let's go back and review how Joey copes with these emotions... in unexpected ways.

Oh, and now let's punish him for it. That will help make him feel safe and comfortable, right? Right?

I am sure I will get email, and possibly comments, about how to "take it from the admin's point of view." Or the teacher's. Or anybody but Joey's. Save your breath. I get it all the time, I see it all the time, and it is time these "professionals" started seeing it from my child's point of view- and started offering him (and dare I say, the rest of the kids in their care) appropriate support and understanding, even when it is difficult. Hearing "we are very accommodating to Joey here..." on the phone made my blood pressure jump. Yes, accommodating, until you aren't. Like "accommodating" a kid in a wheelchair, until there is a step you haven't bothered to remove from their path to get to class. "But we put ramps everywhere else!" is no excuse. You have to put a ramp here, too.

Unless, of course, you have no intention of that child actually being able to access their education all the time- just when you feel it is convenient to allow it.

Tuesday, October 23, 2012

Disappointed. But not surprised.

If you haven't heard yet, Ann Coulter pulled out the r-word. I don't understand why people who make their living being in the public eye can't watch their mouths. Or perhaps Ms. Coulter wanted to call out every special needs person and parent in the country and insult them. Perhaps put them on show. You know, the whole "who is the 47%?" thing, the people Mr. Romney doesn't think it is his job to care about.

I'm disappointed. I wish I could say I was surprised, but I can't. See, I've also been following the posts of my politically-minded friends online, on a variety of forums. And unfortunately, this attitude is not uncommon, especially in certain kinds of political circles. With the brief discussion of education in the debate last night, they came out in force, cracking jokes about special education and the students who are in special education environments- especially in self-contained environments, not that inclusion and mainstream environments were left to be sacred, either. Friends who posted how they were in the "advanced" class, because "there were no paste eaters", or were in the class with "window lickers." Jokes about the "kids on the short bus." Jokes about kids who walked differently, talked differently...

And who fits this description?

I started to reply to some of those friends, but I realized I was just opening up my beautiful son- who can run circles around his classmates in math and spelling- to more abuse, more ridicule, more hate, and more plain meanness, as was laid bare in these comments by my friends and friends of my friends.

And by Ann Coulter.

Join the Blog Hop on this topic. A lot of people are saying important things. Mostly, "I love my family. Quit dissing it."

Saturday, October 20, 2012

New Design- Loving Someone Awesomely Unique!

Check out the new designs at my Cafepress Shop!

Thursday, October 18, 2012

Attack of the Blue Bunny

Guess who's coming for another visit? 

We've been losing an awful lot of teeth around here. Joey has asked for a teddy bear. No clue why, but I am sure the Tooth Fairy will find him a good one. 

Tuesday, October 16, 2012

Bullying: Part III

Andy has returned triumphantly to the bus in the morning. He still complains of the noise, but he's happy to be on there. We have four at our stop for this bus: Andy, JJ, G, and C. They have become a little friendship knot, with varying enthusiasm from each of them but they sit together, and ride the morning bus together, and it is awesome.

Andy is the only boy in this group. This is about to be important information.

See the title? Well, it turns out there is another little posse on the bus. It is three boys, and I don't know all the names, so we'll just call them Bossman, Thing1, and Thing2. Andy told me about them Thursday evening. They sometimes sit in his seat when they aren't supposed to. The sometimes push against him when they go down the aisle. Sounded like rough kids to me, and I suggested telling the bus driver. Andy said he had.

He was more upset Friday morning. He didn't want to go to school, or get on the bus. But off he went. I decided to have a longer discussion when he came home. And so, Friday, evening, we had a long talk about the bus. Bossman was mean. Thing1 was the pushy one, Thing2 a little less energetic but definitely in the group. They were bugging him, they were bugging his friends, and they were definitely calling D (Joey's friend) nasty names. The bus driver had done nothing, so he was telling me. I decided- and told him so- that it was time to tell other adults, such as his teachers.

I sat with him until he was asleep, then I swung into action. I emailed Joey's teachers, since D is in Joey's classes, and told them. I told D's mom. I shot off emails to Andy's teachers, and asked them to forward these concerns on to whomever they felt they needed to forward them to.

Monday morning dawned. Andy complained about going to school and riding the bus.

"You know," I told Andy as he ate his breakfast, "you don't have to get on the bus if you don't want to. At least, until we get this bully thing cleared up."

"Oh, no!" Andy's eyes got wide. "If I don't get on the bus, who will protect JJ? And I gotta be there to help G and C!" Knowing these young ladies, I was both concerned and amused. Chivalry is apparently not dead. However, G ad C were definitely a tough little team, and kids rough enough to try to target them were definitely trouble. And likely to meet trouble, in the form of G and C.

JJ is a different story. She's more likely not to realize there is a problem. She's a roll-with-the-punches type of laid-back kid, partly because she's been raised with a brother with is also ASD. That can teach you to roll with a lot of punches. She's also Joey's age- two years older than Andy. You know, I might be in a lot of trouble in a few years...

Anyway, when they got on the bus, I huddled up the parents and informed them of what Andy had told me, and what actions I had taken, so folks wouldn't be broad-sided. Bus bullying is something that often goes unreported in Kid World, as it is often accepted as a norm. Everyone agreed to talk to their kids and find out what was going on.

But my emails quickly made the rounds. They were sent up to the Vice Principal, who forwarded them on the Principal. Everyone on the bus was interviewed. I received a series of emails as steps were taken, information gathered, and conclusions met. Bossman was a known problem, and all three would have immediate consequences. Sounds good, doesn't it? We will see how it plays out.

In the meantime, I got the skinny from the other parents, who had spoken to their kids. It was worse than I thought. Apparently, this trio was stealing items from kids, including JJ. Andy was getting them back, especially for JJ. They were saying nasty things about any kid who was "different" and forcing kids to do and say things that were inappropriate. They were especially hard on anyone they thought was "gay." They pulled JJ's hair, too. They had been moved to the front of the bus, to no avail. And that was what the kids would talk about.

I am so proud of my Andy, who stood up to these bullies and insisted on helping his friends. I am proud that he took a stand and told and adult. And when that adult's interventions were unsuccessful, he came to me. Tell your own kids to stand up against bullying. Tell an adult. And if nothing happens, tell another. And another. And another... until someone steps in and does something. Don't back down, and don't give up or give in.

We love you.

Saturday, October 13, 2012

Happy Weekend!


We've been blessed with all sorts of awesome days here. I'm thinking it is all your good thoughts, prayers, and happy vibes that are helping. Thank you!!!

Wednesday, October 10, 2012

Super Joey World: A New Tale

Well, I may not be able to get Joey to read right now, but you know what? He wrote a story. Himself. No prompting, asking, nothing. He came in with it all written, ready to read it to us! 

Here it is, Joey's new masterpiece: 

Part 1
Justyltiouios had a very good art.
The art poster is an apple of Mr. Maggio.
Justyltiouios is a smart kid. He learns about Spanish.
For Grades 3-5

And here are the penguins Andy earned from the fundraiser, posing with Joey's story: 

The only order Joey got was mine, so he didn't earn any penguins. However, I have bought some Angry Birds to give him instead, because he still is awesome. And Andy says he will share the penguins. When they aren't out saving the world. 

Saturday, October 06, 2012

Olympic Gold

In an exciting new development, Joey got all excited about participating in his school Olympics on Friday. He's usually put off by the crowds, the noise, and his lack of motor planning. Joey is a perfectionist- he wants to win, and get dramatically upset when he realizes he is unable to do something- like jump rope. Or skip. Or get a ball in a basket.

Andy's class had their Olympics on Wednesday, and he loved it so much, he got Joey all excited about it, too. It also helps that they are into rankings and medals right now, with all the Olympics hype and their love for Mario Party 9. I packed some movies in Joey's backpack just in case, but we were all excited that he was excited.

Yep, he participated! and guess what- his class won. He got a gold medal! I got several texts from teachers telling me how happy he was, and he got off the bus practically dancing, showing me his medal, talking about the games and ceremony.

Then he got serious.

"What's the matter, baby?" I asked, suddenly concerned.

"Andy didn't get a medal," he said very seriously. "Andy is going to be sad." We talked a little about Andy possibly being sad, since we knew Andy had worked very, very hard to do his best and wanted one.

"I'll give him my baseball medal!" Joey announced in a brainstorm.

"But you earned that medal, too. They are both your medals. Let's think of something else we can do to help Andy feel better." But at that moment, Andy's bus arrived. Joey grabbed his scooter, and headed down the walk to meet his brother.

I could see them meeting, hear them:

"I got a gold medal!"
"I know! I am so happy!"
"I'm sorry you didn't get one. You tried really hard."
"But you got one."
"We can share it! Because we are both winners, because we did our best!"
"Thank you, Joey!"

I couldn't be prouder of my two little men.

Thursday, October 04, 2012

About Language

Joey went to see the eye doctor today. He's been struggling with reading, and we wanted to eliminate the kinds of issues Andy was facing. Cutting to the chase on that front, his eyes are perfect. Physically.

I picked him up early from school; the appointment was at two. He was thrilled. He's been having rough days, but today went very smoothly. Even so, he was glad to get out of school- hey, he is a ten-year-old, right? Who doesn't want to get out of school early? So off we went, with him chatting merrily down the road about Mario and Luigi and thwomps and...

"Mommy, do I have autism?"

Well, now, where did that come from?

"Yes, dear," I replied simply.

"I'm autistic," he said with a grin. "What is autism?"

So we chatted a while about what autism means- about thinking differently, and seeing the world in his own unique way, and how his is good at math and better at it than most of his friends, and yes, it makes him different and makes it more difficult for him to talk.

He seemed very happy with all of this, and you could see the little wheels turning in his head. We did not discuss the language of person-first or self-identity.

After a moment of quiet, he announced again, "I'm autistic!"

Then he returned to Mario Brothers. This time, he was telling me all about Buzzy Beetles;  subject he also cheerfully instructed everyone about at the eye clinic.

Wednesday, October 03, 2012


I'm sitting at home. I don't really feel like writing. I can't find any movies to watch on TV. They all look old, worn out, but I don't want anything new. I could clean, but there is no energy in my arms, my legs, my eyes hurt. My stomach hurts.

He got off the bus morning- he was quiet on the bus- saying he was going to slash people. This was blamed on a game, but I don' know any game he plays that includes slashing. I suppose it could have been worse- he kept the nasty words to himself. I know the bolting is avoidance and attention, but this threatening needs to stop. I got into the car, and drove to Staples, grabbed some cards and markers and binder rings; maybe having those old picture cards and schedules would help again. There is so much for him to worry about. I could make the cards while observing his class.

But I am stopped at the front desk, told I am not expected. But I am expected. But no, they think I'm not. I get it- I've been seen too much. I've been labeled a helicopter parent. I'm being stopped, railroaded, turned away. They have Mrs. H come do it. She's good at it, they know I trust her. He's gotten on a roll since she's arrived. Well, of course he has- she knows how to cut through his avoidance and get him to move. But she won't be here every day. She has other cases, at another school. She's hoping for Tuesday-Thursday. Hoping.

Oh, and by the way, he needs some work on his personal hygiene. Yay.

The principal happens to walk by, he tries to say hello. I can't respond right now. I escape to the car- bolting, just like my Joey.

My Joey, my sweet little guy, is ten. It is getting harder to balance out the growing-up with the odd emotional non-progress; how to deal with a child who is both ten and five at the same time. Puberty is upon us, he knows how to get attention, he explodes from anxiety then turns around and explodes to just not have to do work. It gets difficult to know if this spiral of self-deprecation is depression, or an attempt at control, or an avoidance, like so many other ten-year-olds. How much does the repetition of material he has already mastered annoy him (how many times can you answer a seemingly inane question- one that you know the asker already knows the answer to- without going bat-shit crazy? Some subjects definitely seem like that to Joey). How much energy can you expend before being exhausted? And if a strategy for communicating exhaustion or frustration result in calming, feels-good activities, why not try to use those strategies for other times of discomfort- like time to get work done, or try something new, or cope with minor frustrations?

How have I managed to totally fail him, to not get him to understand the importance of self-regulation, to love learning, to want to know about the world. How have I managed to sabotage all the work we thought had been done?

I sit home, and stare at the computer, the blank TV. I manage to get down to the Farmer's Market and pick up some sweet potatoes for dinner. They are sitting on the counter. I'm not sure why I bothered. Andy will look at them and pretend to retch. Joey is just as happy with hot dogs or McDonald's. JoeyAndyDad doesn't like sweet potatoes.

I talk to my mom. I think I managed to get her upset because I'm upset, but not much else. I know I joke a lot about drinking, but seriously, I don't really. I suppose this would be a good time for it, but I'm just as lethargic about getting something out of the fridge as everything else.

I go back to school at 2, so I can get more evidence of what a hovering, bad mom I am, spoiling my child until salt won't save him. And trying to figure out how to fix it.

Tuesday, October 02, 2012

Tug of the Heart

I was in the middle of heating up my lunch when the phone went off. I have it set so that I know exactly which teacher is calling or texting me, so I knew this wasn't going to be good. Joey was having a bad day. He had bolted from reading, screamed through science and was now breaking down in math. Definitely NotAGoodDay.

I seized our back-up meds, dumped the soup I had been heating into the crockpot to stew with the meatloaf, and headed for school. Only one of the front secretaries even bothers to have me leave my license anymore. I sign in, note that I am expected to the thin air because they all know that already, and head down the hall.

His teacher and para are in the hall, chatting. This isn't the math teacher he's supposed to be in with, its the other teacher, and she has vacated her classroom so that Joey's resource teacher can use it to calm him down. The other child the para is in charge of helping isn't in school today. That may be one facet of today's melt festival.

I peek in, and the resource teacher gives me the thumbs-up, so I go in. He sees me, wraps his arms around me, leans his head in.

"Mommy, take me home. No one wants to be around me today."

I explain that I am not taking him home, that I have brought him some medicine, and I let him have it. He takes it, cuddles in again.

"Take me home. I want to go home."

The resource teacher suggests they go for a walk instead, and he agrees; off they go. I watch them disappear around a corner to walk up and down the stairs.

It is time for me to go, so he can settle and the resource teacher can do her magic, and get him to do some learning today- likely 1:1, in the small chunks of activities he knows he can handle when he's upset. I know there is something wrong in the other classroom, the one with the reading and the math. The other teacher and the para keep talking, discussing strategies to help Joey through a lesson, through a day, through times when he needs to be engaged, through breaktimes to get him calmed.

I turn and walk down the hall, so I can be gone before he sees me.

But all I want to do is take him home.

Saturday, September 29, 2012

Training the para

Yep, apparently the majority of the training of Joey's new para is falling on me. So I put together an awesome powerpoint, starting at the beginning ("What is autism?") and tossing in all sorts of awesome tips for Speaking Joey. He actually had a decent day on Friday. I should do this a few times a year!

The first thing about my Speaking Joey guide is to remind the viewer that they should toss anything they picked up from pop media and culture about autism. None of it really applies to Joey, or not in ways you expect if you are stuck in the pop media model of what autistic people are like.

Dr. Grandin's idea of thinking in pictures and attaching every example she has ever seen of a noun to that word may seem a fascinating insight about autistic people- and it is. But with Joey, you need to apply that not just to word labels. He uses this technique of filing every word and sentence and paragraph he's ever heard or seen, and using them as placemarkers in language. When he needs a word or sentence, he zips through his catalogue and comes up with the one he wants, and puts in the relevant words as needed. The result at least sounds relevant, if not exactly what you would expect him to say. If he has no sentence in his arsenal to use, what comes out as he tries to construct one himself is an odd word-salad that has to be untangled.

Autistic people are often portrayed as needing sameness and ritual. This is mostly true. But for Joey, that translates to needing to know what is coming in terms of what the activity will be, when it will be, and who he will be doing it with. He tolerates subs at school really well if I know the night before that there will be one. He likes routines in his days as most kids do. However, when there is a sudden change, he can't process and recover as quickly as most kids.

The presentation goes over how to keep Joey participating and coping smoothly. Safe spaces, breaks, maintaining engagement/avoiding boredom, paying attention to his cues and communication style. It then goes into what to do if something goes wrong- how to handle different kinds of meltdowns, different types of bolting, and how to redirect him and de-escalate a situation. He goes through his strengths and specific issues, his likes and motivators, and things that we, as his parents, just know to do and say and think about, every minute of every day or every situation.

I understand this has now been printed out, studied, and distributed not only to the new para, but to all his teachers, with plans of distribution to the admin.

I should do this a few times a year. He had a fabulous Friday.

Thursday, September 27, 2012

Wow, a first!

We were selected in a list of awesome autism-related blogs by! We've never been included in that kind of thing before! And it looks like I am in excellent company- whoever their judges are have good taste in blogs. Check them out!

Tuesday, September 25, 2012

Then a Storm Blows Up

I was really looking forward to tomorrow.

I've been running about like a crazy woman who beats up turkeys with santa hats, getting kids settled into school, getting new speech evals and OT sessions and appointments for more evals. Also, teaching classes and trying to get stuff up in my Etsy shop. And clean my house, which still looks like a tornado blew through after the bomb went off. Oh, and there's baseball. And my ETS job. And some other stuff. And trying to get Joey transitioned. Yay, me.

Tomorrow is the first day I was really going to take some time off for just me, doing me stuff, while petting cats. The morning would be spent working my ETS job, and then the afternoon I was going to sit on a couch, playing autumn favorites like Disney's Ichabod Crane and maybe a bit of Harry Potter or Fellowship of the Ring, I hadn't really decided yet. I was going to finish making hair scrunchies and maybe bake some cookies. I was going to clean the front hall.

And none of it is going to happen.

Instead, I will be at school, sitting in on Joey's math class to figure out what the cow is going on in there. He keeps bolting from it- sometimes twice in a single lesson. The new para they tossed at us yesterday, without warning, has no experience with autism or even working in education (her parents, yes. Her, no. Apparently her college degree is in business). I feel for her. She's about to have an unhappy parent come crashing into her life on Day 3 of her first real job ever and give her what-for. That's what happens when your boss tosses you into a job when a child's safety and life are on the line, without training you, transitioning you, or even informing your new co-workers that would be arriving. Talk about "no support." Sheesh, poor girl.

My first priority, however, is my Joey. He needs appropriate support available to him at all times, and he needs it three weeks ago- well, five months ago, actually, but let's start with where we are. If he can run out of a classroom and across a hall, he can just as easily run out a door to the parking lot. He needs his academics to be brought back up to par. We started at this school reading four grade levels high; now we are "below basic." They never bothered to hire an autism specialist for the school, they just borrow the one from the lower elementary.

I can't let him lose more time- academically, functionally, emotionally. We're already trying to dig our way out of the pit he's already fallen into. We've worked too hard to let him down now. He's worked too hard. Ichabod will have to wait.

Thursday, September 20, 2012

Things That Don't Wax In The Night

Welcome to a new school year. Andy is transitioning OK to his new (rocking!!!) teachers. We've had a little trouble getting them to understand that "dygraphia" means "please don't send home long writing assignments or you will drive both he and I to eat large quantities of ice cream all night", but other than that, we're good.

Joey, on the other hand, is in the grips of anxiety. Everything is new again. New teachers. New schedule. New para support. Autism program only twice a week instead of every day. Lots of new testing. He has all but completely refused to have anything to do with books. He will let me do small amounts of reading to him, but his auditory processing and focus means we have to read passages several times before he grasps what is going on, and that drives Andy to distraction ("Mom! You've read this part FOUR TIMES!!!") I've gotten him to read one picture book; aloud, but independently, and one page from Encyclopedia Brown. Both are books I know he can read easily. The problem is something else.

One facet is definitely the Anxiety Monster. One night this week, he was up and down, in and out of my room all night, to the point I woke up and asked him what was up.

"I didn't throw up on anything!" was his cheerful reply.

Yeah, you bet I was up in a hurry and checking bedrooms, bathrooms, hallways... but no sign of waxing. He said he didn't feel sick. He tried to sleep some more. I listened to him toss for a while. Then he got in bed with us, and tossed for a while. That brain must have been going like mine- a mile a minute, revved to the full. I could nothing more out of him to help try to ease whatever is bothering him.

The next night was the same story, with the same proud explanation: "I didn't throw up on anything!" Naturally, this makes him tired at school, so this week has been even worse than the last two- which have been predictably roller-coaster wild.

Then the Anxiety Monster struck at school.

Math class. Joey's best subject. No one really expects him to freak out in math. However, boredom is not our friend, and we have a whole new crew who are not used to speaking Joey, and without the excellent team communication and ready resources we had last year. Joey had the work done before the teacher had even finished explaining the lesson, and there was nothing else for him to do. Naturally, he started messing with stuff and getting into things, and so was told to stop. With nothing else to occupy him, and stress already at the full, he melted and bolted. The new para (who is a sub while we look for a new para to replace the one who was dangerously bad at the end of last year) leapt into action (yay!) and managed to cut him off from exterior doors. He ran to the principal's office.

This used to be a safe haven for Joey. The principal we had in third grade had football stuff all over his office, and Joey found that comforting, so he soon started running there. The old principal even had a little pillow and rug for him, in case Joey needed a corner while he was away from the office, which was totally so cool of him. But this principal doesn't do that. Joey didn't really need it last year, he was pretty comfy in his classroom or the autism room (which doesn't exist this year).

Joey hit that office, had no corner, and lost it. Loudly. With choice colorful metaphors and words. An admin tried to step in, and Joey responded by saying he was going to shoot him and kill him, so there was talk of suspending him. (Hey, folks- most stuff geared toward ten-year-old boys involves guns. You know, cops and robbers, cowboys and Indians, Star Wars, G.I. Joe... what do you EXPECT an echolalic child to say when he's upset with you???) They had him corralled back his classroom by the time I arrived, grumpily shouted at all and sundry to... well, to suck his balls. A glorious term he picked up from one his classmates last year.

And now, I think the new team knows what I mean when I say, "boredom is not our friend."

Meanwhile... JoeyAndyDad and I have been stressing over the coming of Middle School. Yes, a year away. Yes, already trying to figure out what to do. We crunched numbers to see about homeschooling, and that made us feel like we had an option, though it would mean a major shift in how and when I work, and for which jobs. But it is an option- perhaps an important one, because as he gets bigger, people no longer think the echolalia is cute. They understand it less, and have less tolerance for what he is saying. Joey is big, he's smart, and people readily forget what his disabilities really are. He appears to speak so well, you can forget all that good grammar is echo and script. When he uses a script someone doesn't expect, it can be startling. We worry about it being catastrophic. If he gets to middle school or high school using words that sound like a threat of violence, we are going to have a huge, huge problem on our hands. If he lashes out at someone like he lashes out at me, we'll likely have to homeschool, anyway.

Am I really ready for that?

So I've been spending a lot of nights listening to the wheels rev in my head, like wheels stuck in the mud; listening to a boy who is not throwing up on anything, creeping in to find some comfort in Mom and Dad's bed, trying to find some rest.