“Goals are dreams with deadlines.” ~Diana Scharf Hunt
I just got Pearlsky’s Progress Report from school. Well, thank God, it is about time for some progress. Actually, it should be called the Not Progress Report …
Measurable Annual Goal: Pearlsky will use a variety of communication techniques to request activities, objects or to initiate interactions with peers and adults.
How well we know that the student reached this goal?
We will know that she has reached this goal when her intentions are known to communication partners.
That is really what it says. Does this sound a bit like Facilitated Communication (as lambasted discussed here)? It is obvious that no one takes my goal of making her normal seriously.
Measurable Annual Goal: She will actively participate in a morning routine by choosing the order and physically assisting in the activity.
What will the student need to do to complete this goal?
When presented with the lotion, hair brush and toothbrush in a predicable placement, she will choose which she would like to do next by touching it in under 15 seconds.
She doesn’t even do this. But, wow, what an honorable goal.
What’s a dad to do but write an email to the teacher:
I got the progress report yesterday. It’s interesting to note that in her 13 years or so of IEPs and progress reports she has never once reached a goal.
What does that tell you?
To which she replies …
I can only speak to the past two and a half years, but in that time she has been making great progress. Her current progress report indicates that she is progressing towards all of her goals. She has reached several individual objectives towards her goals this year. Consistency has remained an issue because there are certainly times when she is “more with us” (as we were talking about at the Thanksgiving lunch). Her current IEP expires in March and I expect us to adjust goals that she has reached.
So I write back …
I disagree with the concept of “goals” and always have. I don’t see that she has really reached any, yes, at times there is some consistency when she is “on,” but even then it is hardly better than chance.
Intentional reaching one out of three tries (Vision information page) seems less than chance, but I have not done statistics in a very long time. Many items in the report border on “facilitated communication” which is a complete farce in itself, and a trap WE ALL fall into. Her “facial expressions” are mentioned many times … note that when she is very irritated (physically) and even sometime when she is in pain, she reacts by kicking, laughing and smiling, a very different than expected reaction. Facial expressions may be valid when read as we read our own, but quite often hers have a very different meaning.
To be clear, none of this is a reflection upon you or the class or the therapists, if anything it reflects on my daughter and on me. She has never reached a goal, so I still do not see the difference between the goals we are forced to come up with, or my true goal, for her to be “normal.”
I am attempting to set her up with a different set of communication specialists, I have come to the conclusion (along with multiple others in that field) that the work attempted in the past is basically useless. I will keep you fully informed as this gets going.
Do keep up the great work, the efforts, the dream, they are greatly appreciated. But do not forget that the biggest obstacle to achieving any goal that is created is Pearlsky herself.
Why is getting nowhere fast so tiring?
My daughter often nods or shakes her head…in complete contradiction to what she is saying. I must always tell her to SAY “yes” or ‘No” because her head moves are not indicative of what she really wants. She will also frequently answer the last thing she hears…”Do you want cheese or eggs for lunch” A. “Eggs”…ask question oppositely…answers “Cheese”. She says “hurt” for “itchy” and a hundred other things. She also told me the other day that I was a big stupid lady. I am neither big nor stupid…or so I keep telling myself. HA! Communication is a tricky thing. The most important thing you wrote in the letter to the teacher was that none of it was a reflection on her…they get very defensive you know…but…what is she supposed to say? That she agrees with you? That your daughter is the same as always? I don’t know…it’s almost impossible for teachers to do that. I guess that’s why we need people who really get it to talk to. I must say, however, that the first “goal” on your post is the craziest bit of writing I have seen in a long time!
There’s something so I don’t know what about the IEP and the written goals. I get what Claire is saying but I wish we could compare it to something, some movie, some piece of literature, some kind of farce. Perhaps Beckett?
Do you have a particular mode of communication in mind with the new specialists?
For so many years people with Angelman were referred to as “happy puppets” as they laugh and smile easily – I find it odd that in all those years they never mentioned that laughing is not necessarily out of happiness. Smiling and laughing are the one facial expression and sound Dimitri could master successfully and consistently (low lone and apraxia), so he has lots of laughs and “laughter like” sounds to mean different things eg, “the bath water is to hot”.
I know you are trying to be completely honest and avoid all that political correctness an all – but it may be that Pearlsky does show some small signs of progress in a school setting, however minimal. Quite often it is up to us (parents, teachers) to chose whether we see progress or not, we have that power, this is a problem for a whole bunch of reasons. I prefer to go with the “least dangerous assumption”, I certainly wouldn’t want to go back to the idea that some (many) kids are “unteachable” so lets just leave them sitting in a corner.
I think that some children are not “educable” in the sense that they won’t “learn” progressively…we are a goal oriented society. We think that achieving is the only valuable thing. Always onward and upward…never just stop and be satisfied with what is. I believe it is sometimes appropriate to abandon goals…go for sensorial experiences. “Child had a wonderful day…walk in the woods, listened to music, helped to “make” pancakes for pancake lunch….” and so on. We can still show them the alphabet, numbers and so on, but living sensorially is the best option for some.
Cause it’s like running on a treadmill. No matter how fast you go you never actually reach any destination. But you run because it’s the act of running that you are must do, not the movement from point A to point B. So yeah, it can be exhausting, but it’s all about getting up the strength and motivation to get back on the treadmill another day.
Though maybe that is not a great analogy since at least on the treadmill you gain physical benefit. BUT…one could argue there is mental benefit of a positive sort in your struggle (for yourself I mean)…the fact that you DO care and you DO try, despite the hurdles and chasms you have to overcome.
@Claire – I actually agree with you to a large extent and was actually pondering such notions of why is school so important when may be the woods (as an example) have more to offer, just a couple of hours ago 🙂
I don’t have any anwers to what is best, but what I would like to avoid is self fulfilling promises. I’ve no idea what goes on in the US, but here it seems people are still ready to throw the disabled “στον κιαδα”. When my son was diagnosed the doctors idea of a “goal” for life was to “not be in pain or have seizures”, sure I don’t want Dimitri to be in pain or have seizures, but come on! I know others who have been told at diagnosis “have your funeral now”. If we don’t believe kids can learn then we are less likely to give them the opportunity and environment to do so.
nb – possibly I am jealous, bitter and twisted as my son has never seen inside a public school, we are forced to pay for private for reasons I could rant on about, so any kind of goal to me seems better than no goal at all.
Hey Emma…I was thinking the school would be the place to provide the sensorial aspects of “education” as well…I get what you mean though. We’re dealing with human nature and a poor track record of teaching the disabled. Better to have a goal and get people to focus on the positive. Otherwise, like you imply, no one will do anything. FYI, I home school…also forced into it. Maybe things will change when we go to the larger centre….not so sure….
I don’t know you and you don’t know me and really this is none of my business and you can tell me to piss off, or use whatever expletive you deem appropriate, but why does it bother you so much?
The school is stuck with a bad system which is unlikely to change. Your daughter is also unlikely to change. Why not just accept them both as they are?
Deb: If that is a real question, then I would not tell you to piss off! The answer is not so simple. The primary reason is that it is yet another thing thats slaps me in the face with the fact that my daughter cannot do anything (which is very debatable, but go with me here). It is also annoying because at each IEP they insist that I state goals and then refuse to accept the goals I state (“for her to be normal”). So I need to come up with some farcical goal that I have no expertise in deciding. Then they make goals that she never reaches. So we waste all this time and energy proving that my daughter is so messed up that she can’t do anything nor be taught anything.
So why does it bother me so much? I would rather spend time, thoughts or energy on positive things, not impossible things. And, hey, can you say that there are things that bother you that others would shrug at? I accept that their system is messed up and I accept that Pearlsky may not change. Just don’t keep throwing it in my face.
And thanks for the comment. Seriously.
I wasn’t sure I was on the right site with all this WHITE background! Wow, a remodel! I was very interested in the comments on goals. I am just finishing winter quarter and have spent TEN weeks teaching grad students how to write legally defensible IEPs as legislated by IDEA. If you think annual goals make you crazy just wait until they start writing “post-school goals” for education, training, employment and independent living skills. These, too, must be “measurable”. Just take a deep breath and let the teacher write the IEP so she/he doesn’t get smacked by her administration because it doesn’t pass compliance and the school gets a black mark. Ahhh, it is all so complicated and makes me weary. I’ll write Perlsky’s damn IEP. But first I need some information. Given life as it is right now, what is the very best 30 minutes you can spend with her? Okay, 15 minutes?
In my haste to respond to this post I was not as thoughtful as I might have been. I have spent many years working in schools in special ed and teaching future teachers, school psychs and school counselors. I have witnessed much discouragement and ill will between schools and families. I also work with parents, present to parents at conferences, work in mediations between parents and schools…and, after years of being the “expert” became a parent of a child with a disability which taught me so much more than I previously knew from my training and experience. I absolutely support parents. I also support educators. I am in schools with educators that are really caught between the proverbial rock and hard spot. They must write compliant IEPs and the stakes are higher than ever. I am familiar with a district that lost over $1,000,000.00 last year because of IEPs that didn’t meet the federal requirements (and not for big issues). This was not because of parents’ disagreements with the IEPs but because of a typical audit to assure compliance/ Findings inlcuded goals that were not “measurable” or assessment that wasn’t robust enough. My flippant remark to “Just take a deep breath and let the teacher write the IEP so she/he doesn’t get smacked by her administration because it doesn’t pass compliance and the school gets a black mark” had a little more behind it than my initial words. (As well, it is a very poor sentence!) Of course one should not sign an IEP that is completely off the mark. I would just hope that an IEP can be written quickly and painlessly so that the teacher can get on with the work of supporting and teaching the students. I agree that the system is screwed up and it needs to be changed but we can’t forget the child while we are doing that work. The Individuals with Disabilities Act (IDEA) isn’t perfect but we have come a long way since 1978. The IEP is a legal document and parent input is critical in the process. I suppose I should have emailed Disabled Daughter’s Father off-line rather than take all this space on the blog! Please forgive if I offended in any way. (PS I actually used to teach a class called “The Excitement of the IEP”.)
Cinda: Your perspective is a great addition to my blog, thanks!
I’m almost afraid to say this, but I found hiring an education advocate to be more practically helpful and mentally relieving than I could have imagined.