The rows we hoe

I have been reading a few new blogs lately- ones that caught my eye in hopping about looking at other folks' blogs, or Facebook comments, or Twitter feeds. Without the massive mounds of time I would love to have, I am forced to be selective, so this is big news. Most of these new blogs have something in common with the experiences I'm having here- blogs with late-elementary kids, kids that seem to be at the same place Joey is in experiencing and understanding the world. The mix of eager emotion that rolls about my heart as I catch up on these new worlds, as well as keeping hold of the ones I already know and love, was something that seemed to be holding me to the ground as we take the latest hill of our roller-coaster.

I thought I was looking for some kind of understanding, some kind of familiarity, some kernel of how others are understanding their kids and perhaps hoping for a glimpse into what Joey is thinking and feeling. What I think I was really looking for was that "I'm not the only one here" that I hope my little blog lends to others. Standing on the edge of unknown territory, I so want to get a sense of what lies before my feet, and understand that others are at this same place.

Joey is in uncharted waters, and I don't want to fail him and have him drown... or not learn to swim.

And there are snatches of that out there. I'm not the only one with a 10-year-old who is still into preschooler characters, especially for comfort. We're not the only ones with ups and downs of echolalia, frustration, and discomfort. We're not the only ones walking that knife edge of being age-appropriate, yet letting Joey be himself. And Andy, for that matter.

But there is something I have not found- I know it is out there, but we aren't talking about it in ways that I can gain insight on- for helping Joey. We can't be the only ones.

Dealing with overwhelmingly intense emotion is difficult for most folks, but for Joey, who spends his life on the brink of an anxiety attack, the boiling-over can be explosive. Lately, Joey seems to have almost no defenses against intense emotion, and even immediate triggers can be difficult to discern. In November, we had the strange episode of the Not Dead Grandfather, where just imagining the loss of a grandfather- none of which he knows particularly well, and all of which I am happy to report are alive and well- totally overwhelmed him, to the point he even had his teachers upset. The pain he displayed was as if the event had occurred- it was so real to him, he had no defenses to cope with the emotion of it.

Last week, he told everybody he had to give a "last concert" of Signing Time songs because he was going to move to my hometown and go to a new school the next day- and no amount of reasoning would deflect him. Even confronted with the fact that he was not moving didn't help; he was in such a state that the principal called me in the middle of lecture to ask me what to do. (Why did he not call the school autism resource teacher? Because she is split with another school, and was not on campus). I finally struck on using the social skills language he has been practicing in his private OT to try to give him some words he understood to calm him and re-calibrate himself; and that seemed to work. He was at least able to go to class.

I could identify the script sources (Signing Time, plus Quack the Duck from Peep and the Big Wide World), but I could not for the life of me figure out what made him so unhappy and uncomfortable that he would invoke them.

A few days later, he said a friend on the bus had bitten him- certainly that would be an immediate trigger. But in investigating the matter, there is no support for it. The bus attendant and the driver have no clue what Joey is talking about, the friend he claims bit him sits far away from him on the bus and, though an unpredictable child, is not known to bite.

I honestly find myself at a total loss. Was he bitten or not? And if he wasn't, what triggered a two-hour meltdown of echolalia and imagined upset? Is he having trouble drawing lines between imagination and reality? How can I help bring down his anxiety level so that "imagined"* stress does not overwhelm him? Is it the imagined scenarios he is feeling the pain and upset about, or is he hiding other stress (just like, for example, when he pretending to be Buzz Lightyear instead of Joey)? Is it a whistle in the wind, like when he loses something and starts screaming that it is "on the roof"?

I just don't know. But we can't be alone in this. Please. Not that I would want other families having issues, but... please don't let us be alone.




*Although the scenarios he is describing in his speech are not real, the stress is.

Go In With Solutions

As you may remember, our last IEP meeting- which was supposed to produce a BIP- was... well, a disaster. I had requested to get the eval info ahead of time, but the school psych wanted us to "hammer it out in the meeting" and didn't send anything, so I went in with no info. When I saw the info, I realized I still had no info. What they called "data" was nothing of the sort- and even the interpretations and notes provided were basically "variable- variable-variable"- in other words, they failed to note any pattern in Joey's behavior. Which, of course, makes no sense and is completely useless when trying to figure out how to intervene. The only thing suggested looked to me like a data collection they should have been doing in the first place, trying to learn to read Joey emotionally by checking on his well-being regularly. This isn't an intervention. There was no plan for what to do if he had another meltdown.

I have been feeling like an idiot ever since. And I didn't sign that waste of time. I need to get together a letter about why.

And as I mull that letter, I struck upon an idea I should have remembered when I went to the meeting in the first place: I need to provide solutions. I need to state what I think needs to happen, what I want an intervention to look like, what services I believe are required should there be another issue. I need to be clear that suspending him is not appropriate. That when he is so overwhelmed that he loses skills and control of his mouth and his behavior, what needs to happen to calm him, guide him, and help him. We need a clear understanding that screaming obscenities is not OK in a classroom, but we also need to be sure we are doing what is needful to not let things get that far. What are the red flags, and what can be done for each one? What should be done so that you avoid escalation?

And since no one was interested in doing that at the meeting, obviously I need to do it myself. They can then try to tell me no.

Snow Day

Lookie! Snow!

The boys were totally excited. I was totally unprepared. I can't find the bag of gloves anywhere. Joey wore my boots, because he doesn't have any. But we still managed to hit the local slope this morning and enjoy the powder- perfect for sledding, especially if you have a metal snow saucer. We got to see how much faster they are than the plastic ones- and so did everybody else. Woo-hoo!

Then home for hot chocolate and movies, and in and out to play in the back yard for the day. The boys decided to start adding milk to the snow to make "milkshakes." Yum. Then they added M&Ms, so they had a chocolately, milky boy delight.

And at one point, I had two boys on me, with two warm, furry kittehs. That, friends, is what snow days are all about.

Take a Break

Outside, it is icy cold, but pouring rain. Joey is snuggled tight against me, we are signing to Signing Time together. He is home because first he had a cough, and the day he went back to school, he got a tummy bug. I've kept him home after having to pick him up from school yesterday. He seems happy, smiling, but the fact that he is curled on the couch this time of day and the circles around his eyes tell a different story.

"A. This is A, Mommy," he shows me the letter. Rachel announces a new sign, "imagination." We haven't used this sign in a while, he proudly imitates it. "Look, Mommy, 'imagination'! Make a 'B', and circle it around like this." He does this, and realizes it is not quite what Rachel was doing. "No, make a '4'. Like this, Mommy," he patiently shows me, waits for me to imitate him. We sign it together, beginning signing the song that goes with it.

"Look, Mommy, 'pretend.' Do it this way." He gives me some hand-over-hand help. Then he touches my face, since his hand is already there. "I love you, Mommy." He's been saying this a lot lately. He find the expected response to be comforting. I don't blame him.

"I love you, too," I reply, not out of duty, but- as usual- because it is true. "You are awesome."

"I am good at signing, Mommy. I am a good signer. I am better than you!"

"You are a fabulous signer, my love."

"I love you, Mommy."

"I love you, too."

"I can teach the babies sign, Mommy. I am going to teach the babies sign."

"I think you would be excellent at that, sugarplum." He smiles, snuggles, starts going through the alphabet. He gets distracted part way through, shows me a few more signs.

"I love you, Mommy," he says again, absently, watching his fingers form the shapes as he settles in closer to my side.

"I love you, too." I sign it, he sees it in the corner of his eye.

"You are so very loved, Mommy."

"You are, too."

He gets up, goes to his computer, and starts making videos of his signing. The break is over, he's back to busy.

That's my boy.

Social Skills Aren't Just About Doing It Right

Our private social skills "group" has hit a snag. I put the "group" in quotes, because until next week, it is only two kids- Joey and "Buddy." Next week, an old friend returns to our group, "Mr. Man." (I hope to have some more posts up with Mr. Man in them, because he and Joey have a very interesting relationship.) The two currently there were matched up by our OT, who works closely with them in a program called Social Thinking. They are learning about important things like body language, expected and unexpected responses, and how to tell when someone is talking to you, etc. etc. Buddy has some similar language patterns to Joey, but in some ways is more verbal, but in some ways far more inflexible. Both have difficulties with processing, and need a lot of external processing support and time. I was told this pair was a good match for the group, and Joey likes to go.

Over the two-week break, Joey informed me that he doesn't like Buddy. He was so clear about this that I decided the OT needed to know, to head off any problems.

You know you are about to have an interesting new conversation when you pull your OT aside after group, and say, "Miss L, Joey told me... he doesn't like Buddy..." and she cuts you off with a cheery, "Oh! Good!"

Often enough when we have Joey in groups, it can be very difficult for us to figure out exactly what Joey is getting from the other children. He seems to be modeling for the other kids, but not having much modeled for him. I know things are working because of the improvements we see, but I haven't figured out exactly why it works. What's in it for Joey?

IN our little pairsome, Joey is again the model. Joey is very good at learning the proper way to do things, and modeling that in controlled settings. Buddy is not. He needs the foil of Joey to work on how things are done right. Hence, he often makes "unexpected choices." Buddy does not respond in the ways JOey is being taught he should be responding. For example, if Buddy is sitting in the middle of the hall, and Joey wants to get by, we have taught him to politely ask, "Can you please move over so I can get by?" He then expects the response of the child moving aside so he can get by, because the other children have been taught that when someone asks you to move aside so they can get by, you move aside.

Buddy ignores him, and stay right where he is. Sometimes he may be playing a game in his head, and says something that seems arbitrary to Joey, like, "Pow! You lose a turn!" This is very confusing for Joey.

However, this is a common issue to think about in any social skills or anti-bullying campaign. You are being taught to react to situations in certain ways, do certain things, with the denouement being the bully starts being nice and everyone lives happily ever after. Right?

And yet we have all figured out it doesn't work that way. People do unexpected things. The bully keeps being mean. The co-worker keeps stealing your lunch. The neighbor keeps letting the dog bark. Mom still doesn't buy you the toy. Now what?

For the past three years, Joey has had in his IEP a goal to deal with bullying. It is an unfortunate truth that bullying will likely be a fact of life for Joey, and he needs to be specifically taught the coping skills most of us learn just by having to deal with jerks all the time. What do you do when you do everything right, and the situation is still wrong? Or unexpected?

This is one of the things Joey has been discovering and learning in group this year. How do you deal with the anti-social behaviors of others? If people make you feel uncomfortable, what is the appropriate and expected way to respond? What is a proper way to resolve an unexpected issue or response? Buddy stays put; Joey has to learn how to step around him, and perhaps go do something else. When Buddy says something that seems not to make sense, Joey is learning how to respond. When Buddy isn't nice to him, Joey is learning what to do. He is learning that not everyone in a class or group is a friend, and that it is OK that not everyone you meet, or who is in your classroom, is not your friend. You don't have to be friends with everybody. People who treat you in mean ways are not friends, and you do not need or want to be friends with them. He is learning to deal with people who are not friends, without being rude or unexpected- and how to be safe in dealing with people who are not your friends.

These are skills the school keeps saying they can't teach Joey because "no one bullies him."

I call hockey pucks.

Call a lawyer

I've been in this special ed gig for 8 years now. I've gone to good meetings, nasty meetings, confusing meetings. I've spent weeks putting together presentations, binders, handouts, and data graphs. I've sifted through evals in techspeak, observation reports that have some or no observations, and IEP goals that are measurable and unmeasurable. I have fought, planned, co-operated, held my ground, given ground, compromised, and even thrown a hissy fit.

I am not an OT, a PT, an SLP, a neurologist, a developmental specialist, or a special educator. I am an art historian. And educated person, but not an expert at this.

Our back-up plan, like so many other special ed parents wrestling with an uncooperative and ill-funded system, is that great mantra, "Call the lawyer!" There lies the secret weapon, the person who can come in, look over all the mistakes you have made, and tell you to do next- or if the next step involves, say, the lawyer.

This is such an ingrained mantra that we have taken up Wrightslaw as a banner, reading the books, going to the workshops, making sure we were ready, making sure we had done all we could do before... well, calling the lawyer.

This morning, I called the lawyer.

When your back-up mantra is "call the lawyer", you also recognize that calling the lawyer is an admission of defeat. That despite trying to be an expert at the system, trying to keep the ducks in a row, trying to advocate for your child as best you can, something is terribly wrong. The question is, "what am I doing wrong? And how do I fix it?"

And so you call to make an appointment with a lawyer.

Sounds idyllic, yes? Well, what no one tells you is what happens when you make that call.

See, when you call, apparently you have to be ready, like a lawyer yourself. You have to know exactly what is wrong and exactly why you want to speak to the lawyer. "Something is wrong" won't even get you past the receptionist. Even, "this meeting went badly and I don't think what they gave me is appropriate" isn't enough.

Seriously, I never got past the receptionist, who kept interrupting me to say, "I don't understand why you want to see a lawyer."

We've had a blow, folks. The back-up plan just told us they don't know why they should help us or have our back.

Just the Truth: When Life's Journey is Unexpected

There is an article bouncing around social interwebs which claims to take a bald-faced look at the "truth" of having a child with autism. That "truth," according to the article, is that having a child with autism destroys your life.

It is the most horrible article I have ever read in my life.

For one, it is not the truth. It is the opinion of a person watching a family with an autistic child (not even their own child), noting how the parents had to give up their careers and have no one to help them but a set of retired parents- who are now at odds with each other, because Grandpa resents having to spend his retirement money on his grandchild. I will spare you both the details and the article. It is a waste of valuable time and will just skyrocket your blood pressure.

No, raising a child with special needs is not easy. It is very different from raising a child without special needs, because most people understand and know what to expect in raising a child without special needs. We spend a lot more time in "therapies", rather than "extra-curriculars." We know fancy words such as "propioceptive input" and "pathologic encephaly." We understand plenty of weird acronyms, such as "IEP" and "BIP" and "FAPE".

I still watch the kids at the park and think "wow, that kid needs some OT."

My life is not what I had thought about and planned for. It is, in fact, very, very different. No, I do not have a full-time job, but a string of part-time gigs and contract work. My husband and I go out by ourselves about twice a year, though we have finally found someone we could use for babysitting (an aide with our OT office does babysitting on the side, and is awesome with our guys). Up until now, it was Grandma or else we stay home. Sometimes, that is how life goes. Not as planned.

Does that mean my life is "destroyed"?

My life is different. I don't know many people now without special needs kids, so I am not quite sure how different. For us, this is normal. To go on a trip, you don't just get in the car and go. You have back-up plans in case the trip doesn't work. You pack familiar items, even for a day trip. We are in love with Steve Jobs and Apple for making our lives so much easier. Did you know there are some really awesome apps to help kids with pincer grips and eye-hand coordination and... wait, am I off topic?

Do I sometimes feel sad about not having a full-time gig in a nice little college somewhere and running off to India with my family every couple of years? Well, yes. It was a nice dream. But that's not how life worked. And I will get him to India. It just needs a lot more planning, and won't be happening very soon. However, I did manage to get my passport updated last year. Just in case.

Yes, my life is different, and it changed our plans and dreams and ideas of the future. But we will never say we no longer have one. We have a life, and it is an awesome adventure of a life. We will work through the challenges- just like everybody else. It has ups and downs; even if the downs dip a little lower, the ups rise a little higher. Or perhaps, they just dip and fly at different moments, for different reasons. Life is more unexpected in many ways.

But you know what? Different is not demolished. Unexpected is not always bad. And like Bilbo Baggins, I'll never be the same... but I'll have plenty of good stories to tell.

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?

Happy 12th Anniversary of my 29th Birthday

My poor mom was due at Thanksgiving.

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.

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.

Great.

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.

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.

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.

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!!!

Happy Thanksgiving

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

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?

AGAIN?

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.

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.

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."

Happy Birthday, Beau

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

More Fuzzy Tummy

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