Things that bug me

I've talked about how we had a pretty good IEP meeting with the school this year. But there are a few things that still bug me. As these things aren't what I consider the "most important" things, we haven't pushed real hard on them up to this point. But they're still important, so we are still formulating how to go about effecting change over the next year.

The first thing is how Buddy Boy is treated at lunch. Sometimes he doesn't want to eat lunch. He takes an ADHD med to help him concentrate at school (it works reasonably well), but one of its side effects is that it decreases his appetite during the day. Sometimes he's hungry and wants to eat, sometimes he doesn't. We don't care, as Liz always gets a good breakfast in him, and he eats when he gets home (after his med has worn off).

The school, however, has taken to punishing him when he doesn't eat his lunch. If he doesn't eat his lunch, they won't let him go to recess, which is his next thing after lunch. Liz has tried explaining this to them, but they still don't get it. Basically this bothers me on a couple of different fronts. First, he's our kid, not theirs. He's of normal height and weight. There is no medical reason that he needs to eat lunch. And we've told them its OK if he doesn't. But they think that their judgement should supercede ours in this matter. What's up with that? Secondly, we place a high value on recess. We think it helps to have physical exercise, opportunities for social stimulation, and just plain time to wind down in the middle of the day. So withholding recess is (in our minds) withholding a vital part of what we consider therapy and teaching for Buddy Boy.

The next thing is that they don't have anyone walk him from class to class, then "write him up" when he doesn't get to where he's going. I think this is one of those things that comes from assumptions being made because he is very verbal. This last week he got distracted/interested in something outside while transferring from one room to the next. So he left the building. This is the first time he's left the building this year. This, of course, caused a mini-panic at the school, resulting in 6 people going after him, and Buddy Boy initially running from them before returning to the building. For this he got written up and spent the rest of the day doing "independent work", rather than being taught by teachers.

I'm sorry, but easy distractability is part of who Buddy Boy is. And we think it's necessary for the school to make sure that he gets from one room to another. I don't think he's being "bad" when he takes off, and therefore don't think he should be punished when he does. Just becuase he's verbal, doesn't mean his internal regulation is up to snuff when compared to his same aged peers in 1st grade. I think it's something they need to deal with, and not make a discipline issue.

Finally (for now) one thing really bugs me personally. It's something that his school did last year, and continues at his school this year. At every IEP meeting, they ask us what meds Buddy Boy is on. Like it's any of their business. Haven't they heard about patient confidentiality? And what are they doing with that information? The school nurse needs to know what to give him when. Beyond that, they have no need to know anything.

At this year's meeting they asked us what he was on, and I bit my tongue and let Liz respond. One of the meds he's on is Guanfacine. So Liz mentions this, and one of the teachers asks "Isn't that cough medicine?" No, I think. that would be Guaifenesin. Liz justs says no, Guanfacine is a blood pressure medicine that is sometimes used with autisitics.

I'm a doctor. I practice in a field where knowing drugs is central to what I do. These people are teachers. Every time they ask about Buddy Boy's meds I want to say "Why do want this information? And what will you do with it? Can you even interpret it? Because unless you can tell me the mechanism of action of each drug, how it interacts with other drugs, what its alpha and beta half lives are, and volume of distribution, you have absolutely no right to ask that. Because any decision you may make because of your limited knowledge may be totally wrong, and deleterious to my son."

What makes me most upset about the asking about the meds thing is, if they're making like they are knowledgeable about a field that I obviously know they are not, what other things are they equally unknowledgeable about that they think they know?

Record Time

photo credit- epc


Well, we just had our shortest (and least contentious) IEP meeting ever-one hour, 20 minutes! Buddy Boy is finishing up 1st grade, and this was to review and plan for 2nd grade.

Our last IEP meeting (actually series of meetings) came in at over 12 hours. And both sides had lawyers on the clock. As things have been going better lately, we decided to go in without our lawyer (for the first time in a long time). We figured we could just call a stop at any time and reconvene with the lawyers if they started to throw any curve balls at us.

What a refreshing change. For whatever reason, Buddy Boy has been doing well the last couple of weeks, and I'm sure this helped. But even in general, things are worlds different than last year. There haven't been the problems with physical aggression in school like he used to have. The school has responded by starting to integrate him with his NT peers for some of the "specials" (art, computer, music, and this week, PE). He's been doing reasonably well, as they've provided an aide to go with him when he does these things (something they adamantly refused to do last year at his other school.

Despite his increased success, they haven't tried to decrease the amount of support (OT, language, social skills) he gets, and haven't tried to change his Behavioral Support Plan (we think they just don't want to rewrite this long document that took us months to hammer out last year, but that's OK. Even though he isn't needing most of if right now, we still want it as a backstop).

The team agreed to start Buddy Boy off with inclusion with support in all of the "specials" next year (which will only mean adding Spanish class-we figure we can work on getting him up to speed with his peers in Spanish over the summer).

There were only a few minor things we needed changed. One was that they lumped some of his OCD behaviors (nail biting, playing with fingers) with behaviors he exhibits when he is trying to avoid work. They didn't object when we pointed out our objections to this. The other things were getting things written into the plan that had been only verbally agreed to. We wanted to make certain that there were no ambiguities.

We learned of a couple of changes for next year. One major thing is that his special ed classroom teacher is leaving. She's been good for him this year, and we're sorry to see her leave. We'll just have to hope for the best with whoever replaces her. Luckily at least two of the support people (aide in the class and speech therapist) are going to be the same.

We left the meeting feeling happy, though not totally comfortable. After getting burned big time last year, it's hard not to think that there may be land mines waiting for us around the bend. Trust is a hard thing to rebuild, once it's lost. Since many of the players are different this year, we see it as possible, though still difficult.

Now it's onwards to summer!

IEP's and non-academic goals

Photo credit- kirkland73

Somewhere this last week, on someone's blog, I read about a person's son having services dropped at school because he was doing well academically. I've been looking all day, and now can't find whose blog it was on. I like to link to the original sources of the ideas I get, but can't find it now.

As I recall, the blogger in question raised the quite legitimate questions of what about preparing their child for "real world" skills. Things like communication, independent transportation, doing laundry, etc.

Indeed, the closer one's child gets to "aging out" of the educational system and the few supports it provides, the more one's mind turns to the question of "What's next?" and "Is he prepared?". Susan Senator, on her blog, has recently been advocating forming a new organization called "Autism Works" to deal with some of the challenges that autistic adults face.

But rather than talk about future projects (which I totally support and feel are worthwhile), I'd like to talk about what the IDEA law says now about services to prepare your child for living in society. My apologies to non-US readers, as this law applies to the US only.

First of all, one of my favorite disability law reference sites, which I reference a lot is Wrightslaw.com. It's a one-stop smorgasborg of just about anything that you would want to know in regards to disability rights law.

As dull and boring reading law is (I always thought practicing law would be fun, except for all that dull, boring reading I'd have to do), there is a lot to be learned that is useful when going into an IEP meeting. The IDEA 2004 regs are finally in effect, and some of the things that this latest iteration says are actually good for us.

One of the things that struck me when I read that post on the other blog last week was the old (but still used) dodge of "If they're doing well academically, they don't need services." That is, of course, patently absurd. This was not true before the IDEA 2004 was released, and is even less true now.

From the Wrightslaw site:

...The requirements about using present levels of functional performance to develop functional goals in the IEPs of all children with disabilities (below) are in IDEA 2004, the federal special education regulations, and the Commentary. ...

Furthermore, the idea of "functional goals" is addressed:

...Functional means nonacademic, as in “routine activities of everyday living.” This clarification should help IEP Teams understand that the purpose of the IEP is to prepare children with disabilities for life after school. this should also help the school understand that teaching children how to "function" in the world is just as important as teaching academic skills.

"It is not necessary to include a definition of "functional" in these regulations because we believe it is a term that is generally understood to refer to skills or activities that are not considered academic or related to a child’s academic achievement. Instead, "functional" is often used in the context of routine activities of everyday living." (Commentary in the Federal Register, page 46661) ...

So this basically says that all children with a disability need functional goals set for them in their IEP. And these goals are to help them prepare for life after school, not just to function in school.

Another useful change in IDEA 2004 is the change in definition of the term "Transition Services". Again from Wrightslaw:

...(34) TRANSITION SERVICES - The term `transition services' means a coordinated set of activities for a child with a disability that--

(A) is designed to be a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child's movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation;

(B) is based on the individual child’s needs, taking into account the child's strengths, preferences, and interests..."

(Note: the underlined words are new in IDEA 2004) ...

By law, transition services have to start no later than when the student turns 16 years old. So it appears that the law, like society in general, is starting to move towards consideration of what happens after a person "ages out" of the special education system. At least the law is supporting providing meaningful training of students for life after school.

Even though Buddy Boy is only 7 now, I know the time will come very quickly when we will need to make some major decisions about how he will live. A lot will be determined by how much progress he makes over the next several years, as well as what his preferences are (further schooling vs. joining the workforce, living at home vs. somewhere else, etc.).

Now we just need to get laws passed that actually provide support for autistic adults.

IEP's are like ...?

photo- this morning on my cell phone

One of the blogs I follow on a regular basis is by Joeymom. She's a great mom who teaches art history in Virginia (and how could I not like a mom who names her kid Joe?). In one of her recent posts, "The Parent Role at an IEP Meeting", she very humorously recounted how being a parent at an IEP meeting is like being a passenger on a plane.

...However, on an IEP Flight, you as the passenger are also expected to understand how to fly the plane, serve the other passengers, and have full knowledge of how to maintain and even fix mechanical and other problems mid-flight. If an engine falls off, you're expected to know how to safely land the plane, re-attach the engine, and get the whole mess back in the air. The pilot won't set course or work the instruments unless you spefically request that s/he do so, and then often says they don't have the resources for working the controls anyway, and besides, do you really NEED to work all those buttons, levers, and gauges? Can't you see fron the windshield where you are going? When you go to find resources to help, you find a flight simulator; but you soon find it is either for an outdated cockpit, a simplified cockpit, or when you go to actually request the controls be worked properly, you are told that you just had simulator training, the pilot has had real flight time! So you try to sign up for flying lessons. Now you're told that you're still just an amateur. But they still won't work the controls unless you specifically ask them to do so, and say exactly what to do and exactly when. ...

While I found Joeymom's description very amusing, I thought it was not quite right, as the flight crew on a plane are personally invested in having a safe flight for themselves, as well as the passengers. If the plane crashes, they're also out of luck. That's not true with our kids' educations. I suggested that perhaps IEP's are more akin to being forced to work with a contractor who only builds wood houses, except that you have supplied him stucco to work with.

While out on a bike ride this morning, I was thinking of another analogy of what it's like to work with the IEP "team".

Say you are a cyclist, and a new road is being built in your neighborhood. The law says that cyclists are entitled to ride on the roads, but most motorists in their cars are not cyclists, and don't particularly appreciate having cyclists "clogging up" their roads. You have to go to the municipal meeting/department of transportation/whoever is in charge of building the road to convince them of what they need to do to make the new roads friendly and accessable for bicycles.

The problem is, although people on this committee have read about cycling and road construction, none of them is a cyclist, and many of them also feel that you are asking for something extra when you are talking to them regarding things such as bicycle friendly road grates, bicycle lanes, and traffic signal sensors that recognize cyclists.

The people on the committee also let you know that they are the professionals, not you, so you should just leave everything to them. They seem not to be able to comprehend plain language suggestions made by you, and insist that everything be put into the technical language that they are accustomed to using.

The committee tells you that there is only so much money for road construction, and they can't afford to spend so much accomodating cyclists. After all, they are already putting in curb cuts for wheelchairs, why should they also have to spend money accomodating you, too?

And all you keep asking for is a way to get to your destination using your bike.

So, how would you describe an IEP (or whatever your country's equivalent) meeting?

Real Men Go to IEP's

In the US, the central event in getting a free appropriate public education (FAPE) for your child is the IEP (Individualized Education Plan) meeting. In theory, the meeting is a convocation of all the people that are involved in your child's education, including the parents as equal partners. Teachers, OT's, SLP's, the school principal, autism specialist, etc. are all to join together with you to come up with the most appropriate plan for the coming year(s). Unfortunately, in practice one often feels as if they were on trial in a courtroom in a dictatorship. Many things go on behind the scenes, many are pre-scripted, and it often feels futile to raise any objections to what the "court" has already decided. I've been thinking about these meetings while reading some of the things one of my fellow bloggers has been going thru (read her March 28th and April 4th posts).

In retrospect, one of the decisions that I made early on that has served us well over the last two years is that I decided to go to absolutely as many IEP's as possible for my son. This proved difficult at times last year, as the school seemingly dragged out meetings (taking hours to talk about things we could have covered in less than 30 minutes, then trying to cram discussion of all of the accomodations into the last 30 minutes). They would then seem incensed when we would refuse to be steamrolled and insist on scheduling another meeting to finish discussions in a deliberate manner. As the school fought us tooth and nail for everything we thought was appropriate, we had several meetings a month for a few months, all scheduled during business hours. As a lot of these meetings were scheduled at short notice, I was fortunate that my work was willing to be flexible and give me vacation time when I needed it.

I fully realize that having both parents attend IEP meetings is not physically possible for many people. People that don't have understanding bosses, not wanting to upset the apple cart at work in a job that you need for the health insurance, being a single parent, and loads of things I probably haven't thought of conspire against having both parents able to show up (once, we couldn't get a sitter for our kids, so even though I took off work I had to stay with them while Liz went to the meeting). But if you can swing it, I think it makes a world of difference.

First of all, one can usually forget about the IEP meeting being a friendly meeting between friends wanting the best for your child. At it's best, the IEP meeting is a business meeting, And "Friends is friends, but business is business" as one of my old bosses I worked for in college used to say. So even though you may consider yourself on good relations with the school, this is still a business meeting where bargaining of (potentially costly) services takes place. It's always good to have another person on your team sitting there while everyone is talking. If nothing else, the person can help to check facts, keep notes, and help you remember all of the points that you wanted to bring up. It's harder for them to distract both of you at the same time (not that they'd purposely do that).

Secondly, if one parent goes to the meeting, it is almost always the mother. Mom's make up the vast majority of the front line personnel that deal with the schools, both on a daily basis, as well as in IEP meetings. It's just the way it is. So the school system is set up to deal with females, for the most part. And when they want to "play politics" and manipulate you in a meeting, they are all set up to manipulate the mom. They aren't as set up to intimidate men. They try to use women's inherent nature to "get along" more than men to get them to agree with things that "the rest of the team sees as reasonable". They also try to manipulate the mom by subtly reminding her that it's really in her best interest to get along with the teachers, who she has to deal with every day, so she shouldn't complain too much in the IEP meeting. Also, if only the mom is there, it's much easier to paint any individual disagreement as the intransigence of "one person", you.

Third, it's easier for Liz and I to play "Good Parent, Bad Parent", or it's variant "Knowledgeable Parent, Parent who needs everything explained to them" (I can play dumb well). These two things allow Liz to keep up her good relations with the teachers while I am painted as the rough around the edges, bull in a china shop parent. Liz can sit there reading her notes while I point out how what they are proposing violates what I understand about what is supposed to be provided under IDEA (the law that governs services to disabled kids). At particularly emotionally trying times during a meeting, it's easier for us to be tag team wrestlers, spelling each other while one of us continues to press them (n.b., while I think fighting and military metaphors are inappropriate when referring to treating and accomodating autistics, unfortunately they are often all too appropriate when it comes to dealing with school systems).

Finally, having a male in the room on our side changes the way they treat us. They're just more civil. This is not just my feeling, but has also been related to me by two different advocates we have had, as well as our lawyer. Somehow, they think it's OK to bully a woman alone, but don't do it as much when there's a man with her. An old, sexist hangover if ever there was one, but I'll use it if it helps me get the necessary accomodations for Buddy Boy.