A more detailed account from yesterday

[Shari]

difficult child's morning was not out of the ordinary, his schedule was the same, there were no changes. His time in my room was fine, in fact he worked very hard and earned a super student ticket. He did complain of being tired several times. Before he left my room he was allowed 2 minutes of free time with an activity of his choice. He played basketball for those 2 minutes.

He then went with the good para to mainstream room. When he arrived there he did his routine as usual, and then began work on a letter to his brother. He was working at his designated desk, it was just difficult child and good para in the close vicinity. Good para was aiding him through the process of writing the letter, with breaks as needed, although difficult child was insistent that he continue working until the letter was completed.

He complained 3 to 4 times that he was tired. He began to cry and make loud sobbing sounds. Para aided him in taking deep breaths to get calm, which he attempted and appeared to be calmer. He went back to work, writing one word. He then cried more, getting louder and banging his fists on the desk. He was given a reminder that he needed to take deep breaths to get back in control, which he did not attempt, he continued crying loudly and banging fists on desk. Para told difficult child that he needed to leave the classroom until he could get back in control. He voluntarily walked to his safe room, when he got close to the room he hit para.

Once inside the safe room he made the comments,
'I hate mediocre para, good para, and sped teacher.' He then made the comment 'I'm going to kill all of you, I hate all of you.'
'I am going to bring a shotgun to school tomorrow to kill principal, or maybe a bazooka.'

So this is his "refusal to work".

 

[DammitJanet]

Ok...what I see here is that the letter got to be too much. Maybe when he said that he was getting tired they should have said...Ok....lets put the letter up and you can finish it another day. How bout we go and play a game?

 

[Shari]

Oops. Should be in general. My bad.

 

[AnnieO]

This is the good para?

in my humble opinion it would have gone better if para had said, "Looks like this is frustrating. How about we..." and then something else should have been suggested.

From my personal experience, if you tell an out-of-control child they need to get back in control... Well, I got slugged for it once. The kid knows they're not in control and can't think straight, so a suggestion of how to get back in control might help.

I can't think straight when I'm out of control. And I'm (supposedly) an ADULT.

 

[SRL]

Shari, was it you who said you had him on the waiting list for Mayo or one of the larger clinics? I can't help thinking that you're fighting a losing battle with the cause of the sleep issue still unresolved. I know he's had the sleep study and an MRI, but if it's unresolved maybe it's time to dig deeper on that as well as on the diagnosis's the doctors can't agree with, etc. A comprehensive evaluation at a place like Mayo could get you through the various departments (neurology, behavioral, genetics) over the course of a few days. Having some firmer answers--if they're out there--could really be a big help in leveraging for accomodations, etc on the school front.

 

[Shari]

Yes, SRL, we're "in the queue" for Mayo, they think somewhere around September/October timeframe to get in.

In the meantime, our name came up in Tulsa, so we have an appointment there in 3 weeks for a re-evaluation with a devped there who is our new set of eyes.

My gut feeling? We're missing something huge that potentially could make a really big difference.

Would like to check his blood sugar, too. He eats breakfast at school around 8-8:15. He's consistently tired at 9-9:30. I'm hypoglycemic, diagnosed when I was about 10 or 11.

But I still don't call this work refusal. difficult child 1 is on difficult child 2's mind 75% of the time. Here he was going to write his beloved brother a letter, and can't. How else is a 7 year old going to react to that?

 

[SRL]

My gut feeling? We're missing something huge that potentially could make a really big difference.

I've always had that feeling when you described your difficult child, especially after we saw the clips. Hopefully you can push for more testing, including genetics since it sounds like they haven't done anything at all in that realm. The fact that so many specialists are disagreeing should be a red flag that you're still missing pieces to the puzzle.

 

[Shari]

Speaking of, I have to find those clips to take with me to Tulsa.

 

[BusynMember]

A "good" para would have removed him when he was getting frustrated and taken him to a quiet setting (not the closet) and told him to skip the work. If he has sleeping issues it should be written in his IEP that he can take naps if necessary. I would have had that written in and would not have signed without it. Do you know there are FREE Advocates in every state? You can call the Illinois Dept. of Public Education and they will tell you who your state FREE parent advocate is. I lived in Illinois and I know they have them.
I think this school is abusive and I would demand another school district placement. That's what I did with my Autism Spectrum Disorders (ASD) son. And, trust me, we got it. I think you once asked for advice and some posters said "be nice in case he has to stay there and they'll take your anger at them out on your son."
I think that was poor advice. in my opinion you have to get very proactive for your child and not give a rat's if they're mad or not. They will NOT take it out on your son because eyes will be on them. Plus they will respect you. They walk all over the parents who are afraid to make waves.
I think the way they treat your son is outrageous. He needs to be placed in a different district. Yes, go to Mayo! If you want any more help, if I can do anything...hey, you helped me rehome my puppy. Just PM me and I'll do all I can to help. I am so sad for your son--he does NOT deserve to be treated this way. And I feel so bad for you to. They are so disrespectful towards parents...grrrrrrrrrrr...

 

[Shari]

I was denied the free advocate. I have appealed, but its a slow process.
***
By my very asking for this detailed account today, I promise you, I opened a can of worms. I knew it would because I am questioning the staff. They know it, and they don't like it. I sent the email requesting this info to the SpEd Teacher only, and when she replied, she included everyone in administration. Things will be tense from here on, I promise that.
***
The IEP I signed was a handwritten copy done during the meeting. You can bet I won't do that again. Thankfully, the director has a copy of that original. Did I mention I won't do that again? But, I'm waiting on the updated copy of the IEP before I do much more, but, while I still intend to be nice, I am already pushing back. A note to the director earlier today said this is not working, we need to get things moving NOW. Putting him in a safe room because he gets frustrated at his inability to perform a task that is listed as a goal in his IEP and is asked of him inside the regular ed classroom is ludicrous.

 

[Marguerite]

I would thank them very much for the detailed account. It is extremely helpful.

It is also possible for even the good para to get it wrong. It does sound to me that he was pushed a bit too hard (for him). I'm also thinking that he has learned to use his sleepiness to avoid challenging tasks.

Time to ask good para the next detailed questions:
1) Is there anything in the task that difficult child was doing, that you felt was challenging him or that he found confronting?

It really does sound to me like difficult child desperately wanted to get the letter finished (either an important deadline, or he wanted to put the task behind him - a good sign, if it's this one) and was simply finding it too difficult. The bit about he got back to the task and only wrote one word - why is that? Is he finding writing too physically difficult, or is he having difficulty working out what he wants to say in the letter?

Shari, this is really wonderful stuff. Unlike a lot of you, I don't think the para did very much wrong really, except perhaps not be in sufficient tune with difficult child. But without a really accurate understanding of what is making difficult child tick, I don't think it's possible to expect much more from the good para. Asking these quesitons and analysing the responses, is the way to find out what is making difficult child tick.

Asking questions - there is absolutely no reason for the school to feel threatened by this. It's simply fact-finding, purely in relation to difficult child and how he is responding or not responding. The school needs to be reassured- this is NOT for a witch hunt, this is purely to help understand what has triggered difficult child. This is "no fault" questioning. If it turns out that the para realises she perhaps pushed him too hard - then great! It's ALL valid information, and such a realisation means the para has learned from the experience.

The worst that can happen, is for no learning to happen as the result of such a meltdown. And who needs to learn? Absolutely everybody!

THis level of communication needs to be ongoing. This is the sort of stuff that should be in a Communnication Book, and use of the Communication Book should be written into the IEP. The book can be chatty, if it helps, and you need to NOT be tempted to use the book as grounds for legal action. If the teacher writes, "He was HORRIBLE today!" you smile and write back, "I live with him, I do understand. Can you clarify please?"
Because what the teacher gives you, will help everybody work out what is gonig on.

Is difficult child learning to use sleep to get out of certian tasks? Or is he finding himself getting sleepy when certain subjects are being taught? Or is there another factor? I'm not suggesting that difficult child is being deliberately deceptive, but the sleepiness could be a conditioned response because it WOULD reduce his stress levels, to be allowed to sleep. So if he feels stressed incertain situations or performing certian tasks, his body could be trying to help him out by making him feel sleepy, at such times.

It's just a thought, something to bear in mind.

Looking back at the para's description - something else was escalating him. She hasn't identified it. So we need to think, and ask a bit more. Why did difficult child feel he had to finish the letter? What was driving him? Because the sleepiness was making it even more difficult for him to do it, there were probably other factors making the task difficult (and we need to identify them, they are part of the ongoing factors for him which are currently unaddressed) and there wasconflict - "I have to stop writing this because it is difficult; but I must finish it because..." This is mutually contradictory, and the para wasn't able to fix it (hence his threats; he's angry because the people on his 'hit list' were not making the problems go away).

Some possible problems to consider and discuss with para and SpEd -

1) Is difficult child having pain when he writes or draws? This may need Occupational Therapist (OT) assessment.

2) How is difficult child at writing tasks when he has to find his own words? Does he have difficulty in crafting his own words, or is he actually OK in this area? If he is having trouble composing text, he may need to learn some different techniques to assist him, some 'road maps' for writing tasks, if you will. Here is a website which could be useful for him, if this is an issue:
http://www.writingfun.com/

3) When difficult child was beginning to escalate, what does the para think would have happened if she had taken him to an intermediate place instead of the safe room, somewhere that he doesn't associate with punishment, but instead giving him another chance to get himself under control without the formality of "you have been removed to this place for your own and others' protection." I'm thinking that despite his cooperation initially to go to the safe room, he is maybe seeing it as punishment when he should be seeing it as a solution, as something good to help him.

He hit the para - not good. It also indicates he was feeling frustrated and blaming the para for not helping him. Which means - he was expecting help, he knew he needed help. That is good.

I think you need to work with SpEd and para to get some new strategies in place. It requires teamwork, getting heads together and thinking of something else to try. I do think that what others have suggested - getting an expert to observe and advise - would be really beneficial. Otherwise you're all having to work in the dark on this. Some good cooperation and guesswork could still get you closer to helping him, but it's really difficult.

Some suggestions to consider -

1) When difficult child begins to escalate, ask him what he feels he needs to do. Hopefully if he is asked soon enough, there will be at the very least, a clue gained form his answer. His response might not be reasonable, but it still can tell a great deal.

2) Trying to get him to breathe was good. However, it failed because he was already too distressed. At that point he needed to simply be outside. Maybe instead of the 'safe room', for a while at least there needs to be another intermediate location, somewhere outside in the garden would be good if there is such a place where he won't disturb others with his noise. Where possible, try to let difficult child direct where he feels he needs to go. He needs to have some power given back to him, especially when he feels himself losing control. He can then learn to use that power to gain self-control. This is going to require some very keen judgement on the part of the para, because it takes courage to hand control to an apparently out of control 6 year old. But at some level, he needs to feel he can control some bits of his environment.

3) If possible, try to set up some options with difficult child ahead of time, while he is calm. Maybe even talk to him (you, SpEd, good para at least and difficult child) and see how you go discussing how he feels when he begins to get upset, see if he can explain why he was upset, and ask him how para could have helped him (if at all).

He's only little, he mightn't be able to contribute much, but it can be remarkable, just how much info you can get even from a very young child.

Again, to reiterate - thank the school for being so helpful with the detailed description. The outcome of this Q & A can only help.

Marg

 

[Shari]

Marg, I don't have a lot Occupational Therapist (OT) time to answer and haven't read your whole reply yet, but I want to point out that difficult child has fine motor problems and he struggles terribly with writing anything. To make one capital letter uually takes him several seconds and multiple pencil strokes. He can't write. One of his IEP goals is to learn to write half the alphabet. I guess that's why I'm a little frustrated with this - this was the better para, pushing him at something that he was requested to do in the mainstream room, but already has been identified that he can't. I'm all for pushing him, but is that the place to do it?

(he adores his brother and is always wanting to send him stuff - just about any assignment that is a letter or a picture is done for his brother.)

I'll answer more soon. This is all the time I have, but wanted to be sure to throw that out there.

PS - I did thank her for this. It is very helpful to have the big picture. Unfortunately, they assume I am looking to blame the "mediocre" para by asking for the "who's", and I am certain things will be very tense for a while.

 

[Marguerite]

THanks for the clarification, Shari. Sorry I tend to write so much. I'll try to be brief.

It does sound like he could have hypermobility problems which are especially creating havoc with his hands. This has also been a huge problem for us, with the younger three, the boys especially. What we've done, and we began this from about the same age with difficult child 3 - use of computer for such tasks. It's a lot easier to type, than to hand-write.

That doesn't mean he mightn'y also have a problem finding the right words. But if he's typing his written tasks, then it removes the sore hands problem as the factor. If the task is required to be a hand-written one, he can still use the computer to draft his response and then if he absolutely has to, he can then transcribe from his own typed notes and thereby not have to deal with sore handds AND word-finding problems at the same time, assuming that is also an issue.

Another reason to let him use a keyboard - surely the aim at the moment is to get him to put words on paper? In which case, that part of compliance is a good start. Once the words havebeen chosen and he has demonstrated he has mastery of the English language, THEn people can fuss about handwriting.

Also, something we didn't know about and it's a bit late now - ring splints. If the problem is hypermobility, ring splints are one option to reduce pain for those having difficulty with this. They needn't look too obvious, but one bonus of ANYTHING looking obvious, is it makes it clear that at least this component of difficult child's problems are a physical disability.

We were given a lot of exercises for difficult child 3, to help him strengthen his muscles and ligaments in his hands. These exercises did help a little, but only a little. They also suggested he learn to play piano, because this encouraged him to control his fingertips by curling them in, and not letting his fingers bend back. Other exercises - making 'snakes' out of dough, especially pressing it with his fingertips and trying to not let his fingertips bend back. I make gnocchi and used to get difficult child 3 to help (he LOVES eating gnocchi, and it's one of my gourmet poverty food recipes). The gnocchi dough is very soft and requires a gentle touch, which also helped him learn some control with his hands, without having to actually exert much force. It was a good exercise, AND something he enjoyed doing.

If the school is concerned that you are trying to find fault with the so-so para, then doesn't this indicate that they realise she's not doing her job right? Because why would you do this, unless there was cause?

Oh well... I do think that you are much closer to finding some really good answers, which in turn should lead to some better management strategies. This should benefit EVERYONE, good para, so-so para, you, difficult child, SpEd - everyone.

Maybe you need to come right out and say, "These questions are designed purely to help us all get a better understanding of how to help him. We are a team, we all need one another. I do appreciate your support in this. I will feed back to you any conclusions and possible strategies we can come up with. If you can, please do the same. Thanks."

Marg

 

[AnnieO]

This sounds familiar... Last year difficult child 2 was allowed to write his essays using a computer (speech recognition software at school). This year, not so much. When he did his last "reading enrichment project" he was behind (last minute as usual) so we used the speech-to-text function of the stepmommy... I type faster than he does, and it was getting late! I included a note to the teacher regarding this, got a thank-you email, and no points were taken off for it.

I do like the idea of keyboarding. Many small children know what they want to say, and I know from experience (!) some have more trouble writing it than typing it. difficult child 2 is slow at typing but much faster than writing. He has Occupational Therapist (OT) for this, and has improved about 1000% from 2 years ago, but it's still a struggle.

 

[Shari]

Oh, no, don't apologize. I love your replies just as they are! It seems you have experience with EVERYTHING.
***
I think the assignment itself escalated him. He gets very frustrated when he wants to do something that he can't, and this is getting worse as he gets older. The keyboard is a great idea. I will ask SpEd to pull her notes and review them, I know from the times of previous escalations that they are likely to happen at this same time period, which I would assume would be writing every day.
***
My "problem" with what happened here was that it was documented as a "work refusal", and I don't think it was a work refusal at all, and the para pushed him to do something that we already know he can't do, in the mainstream classroom (as opposed to the self-contained room, where he will have to be pushed to learn these tasks), which resulted in a meltdown, which resulted in a threat, which is held against him. My other problem with this is I can push the school all day long to do what they need to do for difficult child, but they don't know how. I am worrying less about keeping on their good sides now, tho, and I will start pushing appropriately for them to start doing things to figure it out. Some of them are trying. Others are complacent. Others are just plain road blocks.
***
We have a communication log, but it has not come home since before the half days. I have asked a couple of times, but its not happened. I am pushing for that to be found, also, and tho I know where it is, it hasn't been used or sent home yet. If I were to guess, your suggestion of the "legal concern" is probably why (its on SpEd's desk). It stopped coming after I questioned mediocre para and brought the director up to speed on what was taking place and demanded the evaluations be finished within the 60 day time frame, not extended due to difficult child's being put on half days. I never used "law" or "legal", but I did let them know I knew about the guidelines they were working in, and, unfortunately, it had the effect I didn't want it to have, other than getting the evaluations finished.
***
I have been in contact with his docs and therapists, as well, and his DevPed emailed me last night to let me know that even tho his last Depakote level was normal, it was nearly double what it had been at previous checks. So we are talking about that as it may affect this situation now.
***
As for the school's concern about me finding fault with so-so para...SpEd teacher told me, after I observed the problems in class, that so-so para had problems with all the kids. But she told me this off record, and I will not violate that trust. She gave me her blessing to push the principal at that time to address the personnel issue, based solely on my observation, which I did, and that's when the principal retorted and told me if I wanted to help, to butt out and support his plan.
***
And I did tell SpEd this morning that her description was very helpful. She offered to continue sending them that way, and I thanked her and said hopefully with all of us looking at these things, someone will find a pattern or something we can use to help.
***
The keyboard is a great idea, tho. That or even just letting the para scribe for him in the mainstream room. I guess I feel in the mainstream room, its more important that he participate and make an attempt at the assignments than how he goes about doing it.
***
I'm still checking out other placement options. difficult child needs to work with someone who knows how soon. I screwed up by not getting him out of the private school sooner, but regardless, its been a year now that he has been consistently aggressive and that, combined with the fact that we aren't really making much progress at school dealing with him now, really concerns me.

 

[DammitJanet]

Shari...now that I realize how hard it is for him to write it has sparked a memory for me. My oldest had huge issues with writing...he still does. He was diagnosed with dysgraphia. He would have probably done a whole lot better with Occupational Therapist (OT) help and the use of the Alphasmart but back when he was in school I didnt have that knowledge. I wasnt as up on Special Education as I came to be by the time I entered the trenches with Cory.

What we did with Billy was let him use a tape recorder to record lots of his assignments. Then I would scribe for him. He also used those really big fat pencils or big fat crayons because they were easier on his hands. I also used graph paper to line up his letters. If I didnt he wrote so tiny that it made his hand muscles really cramp up and you couldnt read his writing. Even now he writes so tiny you cant read it. To actually teach him letters and spelling..we wrote in sand and pudding and things like that on cookie trays.

If we could have done computers...that would have been the thing. Now with the speech to text programs...wow...what progress!

 

[Shari]

difficult child struggles to make the letters, it takes him forever, and many many strokes. He lifts his pencil 3 times to make an S. A K is 4 strokes. An R takes 5.
***
In addition, a lot of times, he'll sit down to write a letter, say, he knows he wants to write a Y. He'll stick his little tongue out the side of his mouth and bite it, concentrate, and 20 seconds later, have produced, say, a J. Then he'll look at it, realize its wrong, erase it, and start over. Sometimes it takes him 3 or 4 attempts to get the right letter to come out.
***
I don't know what that's called, but its definitely a road block.

 

[Marguerite]

Shari, he needs both a Speech Pathology assessment andalso an Occupational Therapy assessment.

The problem writing sounds like it is at least partly a communication problem - he wants to write a Y and instead writes a J, then realises it's wrong - there is something in the communication centre of his brain that is short-circuiting things, hence Speech Pathology, it comes under their umbrella. They may find something elsealso, which could give you all far more clues.

The Occupational Therapist involvement - what we have to do, to formally apply to schools for permission for the student to use a computer instead o fhandwriting: the formal assessment involves getting the child to write something (usually copying "the quick brown fox jumps over the lazy dog" as many times as possible in three minutes) and then typing the same thing, also in three minutes. The Occupational Therapist (OT) observes te child's handwriting, asks the child how it feels, reports and pain or other difficulty and then according to the observations, makes the recommendation (or not). Generally unless the child performs worse in the typing test, and if there is clear evidence of handwriting difficulty, the recommendation is to use the computer. But then, few people go into an assessment simply out of idle curiosity, you're there because YOU know your child has a problem.
We've also had the Occupational Therapist (OT) tell us of some useful exercises we can do, depending on what the problem is.
Same goes for Speech Path, we get some useful exercises.
But in difficult child's case, I reckon your son needs both (at least) and working in tandem, talking to one another and also talking to SpEd as well as the para(s), for teir feedback and input. This really does have to be a team effort.

Which brings me to...

That Communication Book - it MUST be found. And if it is indeed "lost", then I suggest you simply start another one. It's amazing how it can help the old one materialise!

if the new one gets lost, begin again. And again. make it clear you will continue. This MUST be in the IEP.

We found (to our surprise) that even though we thought the communication was only for our benefit, since difficult child 3 didn't get to read any of it and wouldn't have understood it ayway, that it wouldn't make much difference. But in the times when teachers either lost the book (or I did) or a teacher decided to 'wean' me off it (stupid mistake), difficult child 3's behaviour and general problems got MUCH worse. BIG problems.

The reason - the really fast communication and detailed feedback, even quick, short-note feedback, meant tat immediate concerns were being immediately addressed. The tendency to use emails these days - teachers have to go to the computer, open the file and actively DO something to make it happen. But the Book - if it's on their desk and they look up and see difficult child doing something interesting/odd/wrong, they cna quickly jot it down. Or just as quickly scan over previous entries and perhaps begin to see a pattenr.

Both parties can see patterns, when it's in the book. You can't see the pattern so easily, in emails.

That said - if emails are used, then my recommendation is to copy/paste those emails (including your own) to a single text file. Date the entries. Keep this file as a 'diary' of sorts, a log of events. We use to take the Communication Books to each psychiatrist & therapist appointments. I also took it with us when we were 'interviewing' a new school. As the prospective class teacher and principal were skimming the entries in the Book, the looks they exchanged spoke volumes - I hd been far more tolerant than I should have been, of some of the really nasty goings on.

To make Communication Books - you probably don't needme to tell you, but if the school is losing books, this is my suggestion -

Buy a quantity of cheap exercise books. Buy some ready-made clear plastic covers. Alternatively, bright plastic. I then printed a large heading onto an entire sheet of paper (in a bright colour) -

"Communication Book

difficult child 3

Family, friends and teachers, please write down anything of interest that difficult child 3 says or does, so we can have a record of his activities and progress. Good things, bad things, it helps everybody to know about any change in pattern as soon as possible. Regular use is most helpful for everybody."

All that was placed to form the front cover. I then placed text in the area of the back cover, numbering the book. For example, "Book 5".
That way, when a previous book was found, I would know in what order to file it.

I also would decorate the books with colouredmarkers, stickers, crayon etc, to make it REALLY stand out. It's hard to lose a fluorescent purple book with red puffy stickers!

I got to keep the books. I made sure of that.

Where possible, especially if you are concerned that the book is likely to disappear, either transcribe or scan the teacher entries. Even apparently mundane ones are vital - what if there is a mundane, "nothing happened" entry for a particular day, and then at a later stage you find your difficult child being disciplined for something alleged to have happened on that day? It's easy for teachers to mistake a child, especially after the event, so a book entry could clear your child if it's mistaken identity. Or if it's the school victimising your child or failing to tell you what you need, again a lack of entry is a breach of IEP.

Shari, I don't know about you but in all this discussion I feel I am getting a better understanding of your difficult child. If only the SpEd and paras could be privy to this discussion! But of course they can't be, however your questioning and discussion with them should also be giving them some clues. I suspect SpEd and at least good para, are really wanting to find ways to help him. Probably also so-so para, only she's got a flawed role model setting a bad pattenr for her 9and sounds like she's in the wrong job for her).

We're making progress, I feel.

Marg