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.”