Monday, May 21, 2007

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?


mumkeepingsane said...

I would be enraged if my son was being punished for not eating (especially with my permission and in relation to a side effect of a medication).

I also will expect our school to make sure that Patrick gets from A to B because unpredictablity and distractabilty are parts of who he is and will take many years of change.

The school knows Patrick is on Phenobarb for seizures because it came up in the discussion re: epilepsy but I'm honestly not sure I'd share any other medication choices with them.

My IPRC meeting for next year is tomorrow.....ahhhhhh.

Mary P Jones (MPJ) said...

Ah, we have the opposite problem. My son is desperately hungry but won't eat at school because of the sensory stimulation of a large lunch crowd, fear of eating in a place that is not home, etc. We are concerned, and we have been fighting all year with the school to give him privacy and an aide to help him eat, but they don't take his eating issues seriously at all.

That said, I would be pissed as hell if the way they dealt with this were through punishing him for not eating. How ridiculous!

I have an IEP meeting this afternoon and am not feeling the love for school administrators today.

Fore Sam said...

I cured my son of ADD with a few rounds of ALA chelation. Why keep giving your kid drugs when you can cure him?

Joeymom said...

Yep. That's school personnel. And personally, the next time they ask abotu the meds, I would ask just that: what are you doing with this information? Becuase I think you need to know. What are they doing with this information? Obviously, they are not taking it into consideration for any of his accomodations- or they would have an aide for him to walk down the hall, and would DEFINITELY not be fussing over food. Every parenting magazine I have says not to punish children over what they eat- and don't eat. It just creates food aversions and eating problems! We should look up some peer-reviewed research on the subject- and demand the right to make surprise inspection of the program (to make sure he's getting his recess!) I would put it into his IEP that he will get his recess period as well.

Joeymom said...

I also just wanted to say- sorry about the fore sam comment. That guy gets on my nerves, since he seems like... school personnel.

Dori said...

I can't believe they are punishing him at all let alone take away things that are obviously good for him like recess.
What is up with these teachers and "educators"?
I totally totally agree with every thing you have said but what can we do with these stubborn FOOLS at school?

Fore Sam said...

Joeymom, I'm sorry if I annoy you. I'm just trying to help parents learn that autism and ADD are curable. BTW, I would tell the school not to deny my son recess in no uncertain terms. You don't have to take any crap from the school.

mike stanton said...

I teach in special ed and we know what our pupils' meds are for one reason only, if we need to get a pupil to hospital for any reason we need to tell the doctors there if he on any meds. The school secretary holds this knowledge. It is not part of an IEP.

Regarding lunch, this is outrageous. Not only is it a breach of your child'srights, it is likely to create psychological problems for him.

I would be very worried by these niggles. They demonstrate a complete misunderstanding of yur son's situation.

Club 166 said...

Thanks for your comments, folks. I know it seems like I'm "wimping out" by not demanding everything now, but it just seems there's only so many battles you can fight at one time.

Our main thrust this year has been to a) get and keep him in the school he is in now, full time (as opposed to the glorified daycare/punishment in a wooden box place they had him in half of the time, and b) increase the amount of time spent in specials (music, computer science, art, physical education) with his NT peers.

As we were successful in both of these endeavors, we didn't think it prudent to keep pushing on these other things. The food thing only comes up occasionally, and he's only bolted once this year (though they did write up a "behavioral referral" slip for this). And the drug thing they only ask at IEP's. Last year at our IEP's several people were adding his drugs to their personal notes at the IEP, so I don't think the knowledge in our district is limited to the school nurse and secretary.

Yet these are things that I do want straightened out, since as pointed out, they do represent basic misunderstandings of autism and how it presents in Buddy Boy.

As to not taking any guff from the school, I'd rather work with them than against them, and nudge them in the right direction. Regardless of what our "rights" are, I know that they have a thousand different ways to screw us over, including several that we witnessed first hand last year. So for now, we'll try for slow but steady.

Niksmom said...

Perhaps you can write a polite and clear letter to the case manager/team leader/principal and request that your child's IEP be amended in writing (no meeting necessary unless the school disagrees) to include x,y, and/or z--along with your reasoning for the request. Request that the recipient confirm these changes in writing (which should include an amended IEP for your signature) or that they notify you of any legitimate reasons they have for not granting your request. At least that way you have a paper trail which could be useful if you ever do have to push certain issues. It will also give you information you can use to negotitate a win-win.

As for the meds and eating, I know we have difficulty with our son's school nurse. The school needs to know some meds Nik is on as they do have side effects including ataxia; given he is orthopedically impaired AND has absence seizures, tehy need to be able to differentiate or to know when to schedule certain types of activities around when those meds are given. Feeding...CONSTANT battle due to his sensory issues and complex history. Suffice to say, the nurse doesn't get it when we tell her what to do or how adjust tube feeds etc. She challenges us at every turn to know "Who told you to do this?" I've taken to lying to her to shut her up! She is one of those people for whom there is no greater authority than those with letters after their name. Guess the MOM after mine isn't good enough for her! (Never mind the years spent caring for our medically fragile, multiply disabled son...)
C'est la vie!

Daisy said...

I feel for you. You're right on so many counts, and I speak as a mom and teacher. Keep pushing on the recess issue; kids with ADHD or other needs MUST have their recess. Continue connecting his behaviors with symptoms of his ADHD and/or autism. Eventually, the school will either listen or you will have grounds for an IDEA complaint. Let's hope for the former.

Mom without a manual said...

All valid concerns. However I also understand your reluctance to fight over them right now. Unfortunately we do have to pick our battles.

Isn't this exhausting?

Club 166 said...

Liz and I have talked, and what we are going to try first is an end run of sorts. We're going to have Buddy Boy's psychiatrist as well as his pediatrician write letters saying that they are monitoring his nutritional status, are aware that due to his meds he sometimes will not, and should not be required to, eat lunch. They'll also reiterate that impulsivity is part and parcel of where he is right now, and that he should be monitored by school personnel at all times.

It's always nicer to have things come from an outside source. Then we can sit back and say "We're just doing what the doctor says". Of course, it gives them a chance to save face, too, by not having to give in to us. Hopefully a win-win situation.

And yes, it is exhausting at times. But there's only 4 more days of school left. Then we get a little break before we start all over again!

kristina said...

Charlie was on the med you are referring to very briefly and it definitely suppresed his appetite (and this is a boy who loves to eat). It was not the right med for him and was quickly discontinued. But: When we were having our difficult interactions/negotiations/conflicts/insert strong word with the school district, the hired outside consultant tried to use the meds as the reason for the increase in Charlie's SIBs---this, despite a long and well-documented history of Charlie having had similar behaviors (but not so intensely). So much for him doing a Functional Behavioral Assessment....

Joeymom said...

My school personnel takes those letters and say things like, "Well, that's just a doctor. He doesn't get educational recommendations and procedures. We can't do this." So we're hoping hard this doesn't happen to you- it seems to definitely be a good thing to have those letters in hand, especially if the lawyer returns to the picture...