Gifted Issues Discussion homepage Forums Parenting and Advocacy UPDATE: Teacher disciplining disability AGAIN

Oh man! My little guy just came home for lunch telling me he was punished for not finishing his work in Writer's Workshop. He said his hand was cramping so he couldn't do all the coloring and drawing a picture and he asked his teacher to use "apple technology" to finish and she made him change his chart. He also said she told him he would have to call me and tell me what he did.

Our 504 and IEP are in the works but how do I protect him till then?!

Call will happen later today he says. She did not allow technology or stopping and he ran out of time in pain and incredibly frustrated.

I said this to the teacher in a beginning of school letter only 2wks ago:

He has Dyspraxia which affects his ability to coordinate and plan movement. We see this in his fine and gross motor delays and the high level of stress he experiences when needing to perform these activities.

He also has hypotonia (low muscle tone) in his hands. He will fatigue very quickly and sometimes experiences pain with fine motor activities. This is very challenging when academically his need for new information is well above grade level.

Attached was a letter from his OT with specific ways to help him with this.

I just feel ill sending him back to that teacher for several more hours today...

HappilyMom, I'd let him stay home for the rest of the day (if he wants to) and I'd send an email to the teacher restating what your ds has told you, and then restating what you've already explained about dyspraxia and it's impact on handwriting and your ds. You can include whatever request you feel is appropriate for an accommodation - allowing him a break, discontinuing, working on alternative AT etc.

Do you have a firm date for your 504 meeting? Or are you waiting on the recent outside testing report before you have it? If this happens again and you don't have a firm date set for the 504 meeting, I'd seriously consider keeping him out of school until appropriate accommodations are in place. We did that for our dd who has medical issues and that was the *one* thing that motivated the school staff like crazy to get the 504 meeting set up and over with.

If you don't have a date yet, I would send an email to the principal, 504 coordinator, whoever else is on the "team" and request that a meeting be held within the next ten school days. Request a reply to your email within x amount of time also. Be nice, be brief, be clear, be firm.

Last thing - when you are at the 504 meeting or working with your ds' teacher on accommodations, I feel strongly that children in early elementary should not have to ask for their accommodations - the accommodations should be set up ahead of time so they are in place and just a part of the classroom situation for your child. Neither of my children who need accommodations were willing to ask for them in early elementary - they're young, teachers are seen as adults in power, they aren't fully aware always of *when* they need them before it's long past when they needed them, etc. Later on, when they're older, they'll be able to speak up for themselves - but not in first grade. Your ds did a *great* job of telling the teacher his hands hurt - but he shouldn't have been put in the position of having to tell her and having to request his AT. And when a teacher reacts as this teacher did, most kids will be less likely to speak up the next time.

Best wishes,

polarbear

OK, that bugs me. Frankly, my first question would be to ask the teacher if she understands that she pushed him to the point of experiencing physical pain caused by his disability.

Anything short of "No, I didn't realize." followed by an apology would not be good.

I am now shaking and crying. He is back at school. He had an anxiety attack when he saw his teacher in the hall so we had the office call the school social worker and he went to talk with her about what happened. His class was headed to gym, later library, and he would have math in the other grade so I only think he will be with her partially during library.

Maybe I should have let him stay home. I was doing deep pressure during lunch to calm him. The school psych's office has been dark so I don't think she is there today.

We do not have a firm date on the 504. She was "gathering the team" yesterday after our talk and I think out of office today. I think I will leave her a voicemail.

I have a meeting with his teacher tomorrow after school. I am just sick and trying to get my emotions out so I can handle tomorrow calmly.

Please don't quote my letter as I plan to erase it later. How does this sound? I am really livid so I want feedback.

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rewrite with suggested edits on next page

I agree you will want to verify that what your ds told you was what happened. The best thing to do would be to stop by after school today and talk in person to the teacher - *if* you feel like you aren't upset and can do that rationally etc (which I probably wouldn't feel like doing - actually usually didn't feel like doing on days like this, which we absolutely had quite a few times over the years). Sooo.. second best thing, and also just a good idea in general when you communicate via email is to restate what you understand happen per what your ds has told you - "My ds told me that...." - you can add "please let me know if there is a miscommunication or misunderstanding"... restating what you understand gives the teacher (or whoever is receiving the email) the opportunity to explain what happened from their perspective. You still might not know *for certain* what happened - we've had instances in negotiating through IEPs etc with our school where I would restate what I knew without a doubt was said or happened at a meeting in a follow-up email, only to have the school staff claim it never happened - but the important thing is, you've given an opportunity for the teacher to explain and you've also communicated what you were told happened. My gut feeling in the situation Happily described above it that I'd trust what my ds said happened.

This is really tough stuff - it's not easy knowing how to move, when to not move, what to say, who to take it to, etc. There aren't any clear-cut answers for any of it, no specific set of guidelines, each child and each teacher and each situation is different. You're doing a great job - it's just tough, and it's just a very bumpy road at times. You'll get there - keep trusting your own instincts and keep believing in your ds unless you're given a reason not to.

Re leaving a voicemail - I would send an email instead, because it is a written record of communication. You can refer back to it if things start to drag, and there are also state laws (and possibly school district policy) re when a reply has to be sent back to a request for a 504 or IEP eligibility meeting - so your email starts a time clock ticking. Granted, it should already be ticking and hopefully knowing what the deadlines are won't be an issue because the school will get that meeting going asap and it will happen this week and you won't have to worry about it. But just in case - I'd communicate things like the question about meeting status via email.

Hang in there -

polarbear

Happily, I hadn't seen your letter when I was posting - we were posting at the same time. I think it's a good letter - the one small thing I'd do differently (which is only me - I'm not a professional advocate *and* I am a scientist so writing letters is not my strong point! - so take my advice with a grain of salt!) - is to add an exact description of what your ds told you:

For example:

Dear Ms. Teacher,

DS told me that during Writer's Workshop ____ fill in the blank ___ happened. I would of course also like to hear your perspective on what happened to. I beleive you may have seen.... (leave rest of letter as is).

I really do think you put together a great letter

polarbear

ps - there are two reasons to restate what your ds told you - first, to be sure you and the teacher are talking about the same thing and that you understand what happened, but also that description stays with that email and you have it as a form of written record later if there are discussions with the school during the IEP eligibility process or 504 meetings or whatever where you need to refer to it. If you refer to something that happened without any kind of written record, it's often treated as something that never happened - in my school district.

pps- I have no idea why I requoted my own message - I hit the edit button! Or at least that was what I was trying to do - argh!

Thank you! ((hugs)) I need you guys a lot lately.

Here is my modification of the beginning w Polar's suggestions (BTW thanks for reminding me about record--maybe I'll add the library thing):

I believe you may have seen DS' Dyspraxia and Hypotonia at work today during writing. DS was very upset at lunch and told me: "I got a yellow light for not finishing my work in Writer's Workshop! My hand was cramping and I didn't draw a picture. I don't understand how you can get a punishment for not drawing a picture?!" He went on to say that he asked for "apple technology to help with the writing so then drawing the picture would be easy." He said I would probably get a call from him later about it and to be sure I answered the phone.


I do hope you will share with me what misunderstandings or missing details are in the explanation I heard today. DS is very proud of his behavior and wants to do a good job in your class. It means a lot to him to follow the behavior guidelines and "stay green".

Then on with the "as I mentioned in my letter..."

Okay revised with the library incident included (mostly to document disciplining disabilities)... Is this too much?

I believe you may have seen DS' Dyspraxia and Hypotonia at work today during writing. DS was very upset at lunch and told me: "I got a yellow light for not finishing my work in Writer's Workshop! My hand was cramping and I didn't draw a picture. I don't understand how you can get a punishment for not drawing a picture!" He went on to say that he asked for "apple technology to help with the writing so then drawing the picture would be easy." He said I would probably get a call from him later about it and to be sure I answered the phone.


I do hope you will share with me what misunderstandings or missing details are in the explanation I heard today. DS is very proud of his behavior and wants to do a good job in your class. It means a lot to him to follow the behavior guidelines and "stay green".


Last week on the day before we left for our testing trip, DS came home very frustrated and told me that he was not allowed to check out a Hardy Boys book during Library time and had to check out "too easy books" instead because he "didn't come to school with a smile". I'm sure there are some missing details and misunderstandings here as I am sure you would not refuse a child the appropriate reading level because he didn't smile, especially not one with a documented anxiety disorder.


As I mentioned in my letter about his disabilities at the beginning of the year, writing or coloring are often painful and tremendously taxing for him. It is important that he not continue doing those activities when he experiences this pain or begins to get stressed. A break from the activity or an alternate way of completing it usually helps. Fine motor activities will take longer time and greater effort for him to complete than his peers. His OT included suggestions for helping with this in the classroom in the letter I attached to mine at the beginning of the year.


I'd love to hear your feedback about how those strategies have worked or not worked in your class and perhaps others you may have tried. I expect you will soon be a part of his 504 team so I hope we can work together to think of ways to address DS' disabilities and classroom behavior in the days ahead. Anything we can accomplish now should make us even better able to plan the formal accommodations in the weeks ahead.

Interestingly I have not gotten that phone call my son mentioned. I hope the social worker has helped somehow. Still need to send the letter of course.

Personally I would leave the bit out about not understanding why you can be punished for not finishing a picture particularly as it is quoting your son. It makes it sound like he is questioning the teachers ability to set meaningful lessons (which of course may be TRUE but need not be said). I don't understand how I can be punished when I was trying as hard as I could would be better. Maybe outside the quotes as a paraphrase- as simply didn't understand being punished for making his best effort then asking for appropriate assistance (can't remember the official word).

Good luck.

Thanks I'll pull that sentence. It sounded a little wrong there to me too like teacher was being accused or something but was true to his actual words.

HappilyMom, I would keep him home until the school makes ABSOLUTELY CERTAIN that the teacher understands and WILL IMPLEMENT any and all accommodations. It is the only "weapon" you have to correct the situation. They are required to provide a free and APPROPRIATE education. My DD had a teacher like this in K and we are still paying the price for it. I kick myself almost every day for not following my instinct and following the advice I am giving you now.

I would email the principal explaining what happened and that you will not be sending your son back unless/until you can be sure the classroom will be a safe place for him. After that it will be in the principal's hands. S/he will determine how best to educate the teacher and ensure your DS receives the appropriate accommodations. I agree 100% with Polarbear - he should not have to ask for accommodations - the adults should come up with a plan to address his needs. But from my perspective this needs to go through the principal, not the teacher. Not *getting* the LD issues is one thing - actively punishing them? Nope. She loses her seat at the table as far as I am concerned. Time to move it up the foodchain for someone other than the parent to explain to her why this is so inappropriate.

(FYI When DD's K teacher actively punished her deficits the school administrators were horrified. The teacher proudly acknowledged that she had done it and fervently believed it was appropriate and necessary. This was not something that I as a parent could address. Her superiors HAD to be made aware of the situation and had to be the ones to address it with her...)

So the teacher wrote back: Basically saying a few details left out lets talk at the meeting.


Pemberley-- Thank you for chiming in here. I remember you have sadly had experience with this and I really take your advice to heart.

I think my plan is to see how our meeting tomorrow afternoon goes. It will probably only last 20 min but I think it will be long enough to get a feel for how this will proceed with her. I also plan to call the Psychologist who wasn't in today and fill her in about my concerns. If the meeting goes poorly I will likely keep him home.

I am dreading this meeting.... things feel WAY way off to me both with giftedness and with disabilities.

I know that you're feeling VERY upset over your son's distress-- that's completely natural.

I would still advise you to go into the meeting with an open mind, though--

and remember-- until you HAVE an IEP/504 plan, accommodations are sort of a grey area. This will be a short-lived phase, one hopes.

You never know-- maybe your DS' account IS missing some salient features that just don't occur to children in the moment. At least she responded quickly and cordially to you. That part of things, at least, feels quite professional. So my advice is-- wait and see what she says. Let her talk while you listen first, then decide what to do with what she tells you.

Listening obligates you to nothing, after all. I might hold off on a call to the psych until you talk to the teacher-- either way, you'll know more about what you'd like to cover.

Good luck!! I hope that it turns out to be a series of misunderstandings and the lack of a 504 plan in place.

I know how you feel.

It sounds like they are trying to develop an understanding of the situation-- the teacher doesn't know yet what to do. You are going to have to be a master educator in helping them know what you know.

This is a marathon, not a sprint. If you can settle some basic things in this first meeting (he can and needs to check out what he wants to read; discipline guidelines that must be followed)-- know that there will always be fine-tuning in subsequent meetings. If people have good will, they learn.

If they don't, you'll know. But I would not assume that going in.

Good luck today.

DeeDee

Thanks HK!

I had an email from the school psych last night and she would like to attend our meeting. I am glad to have her join us.

I had emailed her in the morning (before the big issue of the day) about DS not getting subject level acceleration promised (after much effort and many meetings and testing) in Lang Arts and Reading and also with some new information about how his dyspraxia was affecting him in gym class. (The day before we discussed testing results and how "not having anything to learn" was affecting my child with the challenges he has to struggle through only to be "taught" things he knew some time ago.)

She had been in the meetings and administered the tests to decide he needed the acceleration. His new teachers were not involved. She is now saying it is the teacher's responsibility and:

" Also, I think an innocent misconception about gifted children on the part of some teachers is that they assume gifted students have mastered all lower level skills (that their skills are evenly developed) and subsequently may be hesitant to provide accelerated matieral when they notice varying skills. Also, a child's functional ability within the classroom may not coincide with performance on assessment, as these are two very different things. We know it is not this cut and dry, but i think it can be challenging for a classroom teacher to understand. "


Feels like a new day, a new battle.

Thank you Dee Dee. Trying to get my mind ready for discussion and your thoughts are helpful.

I think my "goal" for this meeting is to first get their impressions of how things are going, second be sure he isn't disciplined for disabilities and third to discuss meeting the learning needs he was found to have (by the school) that have not yet been addressed. It will be hard to stay to point.

I'm not interested in a power struggle or debating either his abilities or disabilities just feeling out the teacher perspective and checking that his exceptionalities are being treated fairly in this (awful) interim period.

Oh WOW!! The short meeting with the teachers just got BIGGER. Now I have 20 min with the 2 teachers, the school psych, principal, and the district gifted coordinator... Oh boy...

Help please!

Wear mismatched socks.

I stopped by here this morning because I wanted to send you good wishes on your way to your meeting - I'll be thinking of you! It sounds like you have a wonderful resource in your school psych - I'm glad she'll be at the meeting today And glad the rest of what will most likely be your IEP eligibility team will also be there - it sounds very positive for a good start for the journey ahead


These are great goals - and they will most likely be ongoing goals, as it's not going to be possible to get everything resolved and in order in one 20 minute meeting. Do your best to redirect the conversation back to what needs to be discussed today. It helped me to rehearse in my head a bit before meetings like this - to try to anticipate what arguments or questions about a diagnosis the staff might have and how I would answer. It also helped me to have a *very* brief one-line-few-words well-rehearsed calm comeback to throw out whenever one of the school staff questioned the need for accommodations etc - my go-tos, depending on what was said by the staff, were statements such as "Are you questioning the diagnosis of a well-respected credentialed professional?", "We aren't here to talk about the other students, we are here to put together a plan for ds", "because DS can not rely on handwriting to show his knowledge"... simple brief statements that went a long way to diffusing the tendency of a group conversation to wander off track. I would rehearse them in my head on the drive to the school so that I was able to say them calmly and without emotion even if the meeting turned sour to the point I wanted to leap on the table and scream

I think everything will be fine today. You're well-prepared with an understanding of your ds' challenges, and you're a strong advocate.

Let us know how everything goes!

polarbear

ps - after the meeting is over, type up a brief summary of everything that you understand was discussed and agreed upon and send it to everyone on the team, asking if there is anything that you've missed or anything that needs to be clarified.

Warning - humor ahead!

I used to get really nervous trying to plan for meetings while working through the IEP eligibility process for my ds. The advocate I worked with used to give me the same advice over and over again (and I've seen it mentioned everywhere online and in books) - take muffins. Or donuts. Or cookies. Something baked and yummy and sweet as a token of your good intentions of working as a team, of being on the same side, working together, getting the meeting off to a good "we're all a happy family" start.

Well - I'm a mom of three. I don't have time to know what day it is, much less bake. And oh yeah, I have a child with a disability (who at the time was frequently imploding over school), as well as a child for whom "focus" is still an alien word, and that third child who fights every single darned thing in any given day... all of whom I was constantly driving all over town to all their different activities as well as therapies during all our waking hours. I had no time to bake. Which was really irrelevant anyway, because I don't like to bake. In a previous life, I might have used stronger language about my feelings about baking from scratch

I also had visions of our school "team" - the sped staff, the admin rep who had to be present, the school psych, etc - going to multiple x multiple team meetings for the huge number of students who already had IEPs or who were being evaluated etc.... and having to be faced with a new set of sugar-filled, fattening muffins every time they went to a meeting. I could just imagine one of these people taking one look at my warm-out-of-the-oven magazine-cover-worthy muffins I'd hated baking and throwing up at the thought of having to pretend to enjoy one more muffin, while in the meantime, the rest of the once-skinny and now-portly staff folks politely declined what had taken me hours to create (since I'd burned the first batch and the second batch had fallen flat and I'd had to make a last-minute run by the grocery store with all fingers crossed hoping beyond hope there was a package of freshly backed muffins that didn't have "grocery store" radiating from their look and taste

Soooo... I never brought muffins or anything (although I ate a lot of muffins all by myself before meetings!).

I don't think it mattered

So there you have it - complete non-advice!

Good luck this afternoon,

polarbear

My feeling (adding to polarbear's excellent advice) is that knowing MY luck, one of the people I'm meeting with will have celiac, a second will be diabetic, and yet another person will be food allergic. GREAT impression I just made...

LOL.

In truth, I was advised to 'visualize them in their underwear' which is good... until you stop to think about the survey numbers regarding the people who, er-- go commando.




yeah, the 300lb 5'8" English teacher in a thong? Just... no.


Just remember that things once seen (even in the mind's eye) cannot be UN-seen.

And smile when you think about that.

Polarbear, you have no idea what a relief it is to read that there is someone else in the world who doesn't bring treats to every meeting.

Well if it makes you feel better I had a similar crew (sans gifted coordinator) for my first meeting regarding bully teacher punishing DD's deficits. I didn't have advanced notice, though. I just walked into a meeting room filled with people sitting around the table with very dour faces. I thought to myself. "Great. I have one shot to get this right and I'm being ambushed." I sat down and someone placed a box of tissues in front of me - clearly expecting me to become a sniveling mass of jelly. That's all it took for me to become hyper focused and very serious.

I kept my tone low and measured and said my peace. This was the meeting where the teacher not only admitted to treating my DD this way but actually became indignant about it. School psych brought DD in and had the teacher apologize to her and make carefully worded efforts to welcome her to the class. Everyone in the room, with the exception of the teacher, fell in love with DD during that meeting. I gained credibility. The teacher, well I think she just decided DD and I were going to be pains in the arse...

I realize now that it was all a power trip and I turned the tables on them. They came in expecting to have an over emotional, overprotective parent of a bratty, indulged child. They were shocked that the teacher confirmed my version of what happened and truly thought she was in the right. This was not, as it turned out, my only chance by any means. There have been many, many more meetings and there are many more yet to come. Your school psych sounds like a gem. Hopefully she will set the teacher straight. Hopefully the principal will also get it.

This sounds much better than it did last night. Take a deep breath, put on your internal armor and follow Polarbear's advice. I'm betting you will do great.

Please let us know how it goes.

A box of tissues? How demeaning, Pemberley. I'm impressed at your forbearance.

Good luck HappilyMom!!! May the psych be a staunch ally and the staff see reason.

LOL, Polar. This is perfect.

I have never brought baked goods either. My feeling is: this is a professional environment. I don't bring doughnuts to meetings at work; I shouldn't need to do that at school either, where everyone is a professional.

I do thank everyone and shake everyone's hand, I name explicitly a good thing they've done whenever possible, and I try to keep it all cordial even when the going is hard. I think that's sufficient.... usually.

DeeDee

ETA: Polar, I also PMed you about something unrelated...

I'm guessing you don't have to deal with IT staff much.

+1 Zen Scanner

If you want something done by an engineer, bring donuts! If they have celiac, they'll trade them for favors of their own with other staff members.

Hint: they don't have to be home baked.

Our last round through the IEP meeting, I brought sandwiches (vegetarian and non, since my son's teacher was vegetarian), brownies and fruits. Since the meeting had been scheduled right after school ended on a short day I knew that only the admins and the psychologist would have had a chance to grab any food.

I wanted to send the message that we had all the time in the world to hammer out the perfect plan .

It worked. The leftovers went to the staff room. Like hospital workers and IT techs, teachers (as a group) always like finding something edible when they come in the break room. Because there will always be at least one who has had to skip lunch to deal with an emergency...

Good luck HappilyMom.

Oh, and that box of tissues... Ugh!
And apparently it is a sign of being normal: http://www.disabilityandrepresentation.com/2012/10/21/making-a-mockery-of-disability/
Or whatever.

Grinity had a few posts on the right way to use tears to help with advocacy. Me, when I get emotional, I go straight to blind rage. Harnessing it to productive effect is tough. Congrats Pemberley on channeling your exasperation well!

I just read this and my blood pressure is going up. My child, now 15, had similar issues and we had been told it was hypotonia, then dyspraxia, then finally a connective tissue disorder--Marfan Syndrome. I have been posting on teachers.net the last several days about getting accommodations without a diagnosis after I had friends tell me that homeschooling was just a choice and that I could have kept my son in public school because you can get an IEP and accommodations for just about anything.

You might want to read what teachers on that board told me.

Well, I know more about the playing field.

Main teacher is a total piece of work. She made mocking faces while she explained how he was always complaining that something hurt and that he doesn't have "expected first grade skills". When asked for an example, she said he wanted to talk to her instead of get his scissors and crayons when given a task.

Principal said, "so is this psychologist going to talk to the teachers and find out their perspective?". And also backpedaled and politicked.

Math Teacher (grade above and former gifted teacher) complained that he made noises and told her he couldn't write, needed lots of hand holding or personal attention to get anything done.

Gifted Coord. said little other than encourage him to show what he knows.

I got a rush on my numbers (WISC, WIAT, SB) and gave them to the psychologist. All the others took a look and teachers sort of scoffed at them and flipped them aside. Math teach said you can show all these reports that say he is doing all these advanced things but he won't show it in my class (they have done various ways to single digit add/subtract for 2.5 wks so far with whole pages of problems front and back every single day).

I talked about the physical symptoms and anxiety and referred to his disabilities each time an issue was raised.

Both teachers say he is showing learned helplessness saying he can't do things in their class.

Math teacher complained about him not being able to answer strategies to add single digit numbers. I talked about how hard it was to go back several years... math teacher cut me off saying, "Nope, nope. I have other kids who can multiple and divide and they can answer..."

And that's about it. Time was up. Psychologist made solid eye contact and said, we'll talk soon in a sort of comforting way.

Lori please share what you have.

I have to figure out how to type it up in a very straight forward way. I think they sounded a little ugly and defensive in the meeting but don't want to write a "colored" account with my own perceptions.

I'd sleep on it.

Then try to take the approach that you are acting as a "court recorder" as you mentally walk back through everything you can recall about the meeting.

It sounds as though there are two problems:

a) your son's disability is unfamiliar to the teachers (and possibly the administrators)

b) your DS is perhaps about typical in terms of agemates and maturity-- yes? Well, then, they may be expecting a level of MATURITY which isn't really appropriate for his asynchrony-- and that is a separate thing from his disability. That's gifted asynchrony.

Finally-- is it possible that your DS is behaving in ways that are exacerbating the latter problem? It sounds plausible from the comments you reported-- "making noises" and out-of-turn talking, or the proposed "learned helplessness" strike me as possible red flags indicating frustration with behaviors that teachers are seeing as disruptive. I can see how a student who needs to conduct most work orally, and is accustomed to doing so, could seem "immature" or even "needy" to a classroom teacher who is also trying to meet the needs of 20 or 30 other young students.

That doesn't make it right to dismiss very real limitations and accommodations that they demand-- of course. But it might help to try perspective-taking before writing, so that you can cultivate a non-accusatory tone in the writing. Ask yourself WHY they are seeing your child in this way, assuming that they are rational professionals, and not trolls who live under a bridge and seek to harm children and parents at every opportunity. (It is at least somewhat more probable that the former is the case, here, right?)

Okay-- then write it ALL out. ALL of it.

Now revise and remove emotional content-- use Wrightslaw's Letter to a Stranger if you need help there.

Trim things up so that only really awful/discriminatory or somehow actionable items (proposed changes, judgments about ability or appropriateness) are left; because that is what you want highlighted in your letter of understanding.


How can you help them to see BEYOND what they currently think? That's what you have to do AFTER you have that letter of understanding written. Now read it again, and ask yourself if anything is going to interfere with that ultimate goal.

At least you learned what you're up against. Right?

Good job keeping your cool in that meeting.

Learned helplessness? How insulting! The classic experiment involves repeated pain that cannot be escaped until the animal gives up and sees itself as being unable to control its situation. Sounds like the teacher intends to teach learned helplessness by compelling him to continue to experience pain when he has communicated that he hurts and requested appropriate accomodations. Personally, I would be compelled to school her on that point.

Beyond hoping the psychologist has her stuff together and you have an ally to work with, I got no non-violent suggestions.

Wow - reliving this vicariously really has given me a knot in my stomach. I'm so sorry you and your DS have to deal with this.

How explicit were the recommendations for accommodations? I know you don't have an IEP or 504 in place yet and this meeting concerns me. I hope they aren't planning to fight against one. In K the school refused to even consider testing DD saying over and over (and over and over...) "She'd never qualify for services - she's too smart." They were willing to offer things like slant boards for writing but *only* if they could be used by other kids in the class as well. They refused any accommodations without an IEP or 504 and refused to do anything to allow her to be eligible for one. All of this despite my OT report documenting a very real fine motor deficit.

If you are comfortable with the psych I might go the route of a telephone conversation with her tomorrow. See what her perspective was on this meeting. If it looks like the dismissiveness is going to be the accepted response on the part of the teacher you are going to have a battle. You may need to bring in a professional advocate. You may need a letter from your pediatrician authorizing home bound tutoring if they can't meet his needs appropriately in school. I'm sorry to say that you may be in for a serious fight. It is just NOT OK for him to work to the point of pain, and beyond, without the school being willing to accommodate his needs. It just isn't. You are going to have to find a way to get them to understand that.

Sorry I can't be more hopeful. I am looking at this through the lens of my own experience. It was one strong willed ally, in the form of a school psych from our home district, who saw through the mess of denial and refusal at the inter-district magnet. All the good will in the world went out the window at our local school once we crossed paths with the principal who was totally toxic. I don't know your players so I don't know how your experience will unfold. I can only advise you to be prepared to act if you feel this goes beyond "not meeting his needs" and enters "he is being hurt."

Good luck.

I like Zen Scanner's suggestion of pointing out what actually causes learned helplessness.

I think one of the most useful things that I have ever read, in helping understand the disconnect that can happen between school and home with a 2E kid, is Grinity's comment to "Never underestimate the power of a gifted parent (mother) to scaffold and support their 2E child". Sometimes this manifests as mum being unaware of just how much she does to support the child and baffled by why there are problems at school with her child who is "perfectly ok" at home. Sometimes this manifests as the child you KNOW needs help, but school just thinks you have taught them "learned helplessness" (harumph) by extending their strengths and supporting their weaknesses before they started school. Contemplating this can be very helpful in understanding what the situation looks like to the school and thus (hopefully) help you tackle things the right way to get what your child needs.

It's also probably important to get some perspective on the fact that to some degree the first years of school for a very 2E child are going to be about the other Es. This doesn't mean the giftedness should be ignored, or that it's even remotely ok to punish for the disability. But reality is that far more time will be spent really getting a handle on what the disability means, and re-mediating what can be re-mediated than anything else. And as the child becomes more skilled at "doing school" despite their issues, and using their accommodations, and school really starts to get to know them you should (hopefully) eventually start to see them working closer to their gifted level, but it's not likely to happen in K, or probably even 1 or 2.

Thank you all for your thoughtful responses. ...

I am really struggling here. He is a mess. I've seen how bad this can get for him through an awful gifted school experience last year.

My MIL (who is a K teacher) and I are really feeling we need him out of that classroom.

All of their "complaints" related to his disabilities and really both teachers were very nervous when they spoke.

But he IS being hurt. I have another 3 pages of written work he was given for homework... 40 math problems (add and subtract, draw "math mountains") plus ten words to write to practice for spelling (words like "a" and "the").

He is edging close to that breaking point.

And he brought home a "book" they made in class where each child said what they would learn to do in first grade. Those of you who read about the library incident will recognize what my child wrote trying to please his teacher: In first grade I will "learn to come to school with a smile".

I have been following this and just wanted to say how sorry I was for what you are having to go through for your son. There is no one who will advocate for him like a parent can so you are doing the right thing.

If you pull him out what is your plan? Would you homeschool? Would your mom be able to help? How is he at home?

Happily:

There is absolutely NO reason he has to do inappropriate homework. I would send it back with a note explaining that it was an inappropriate assignment given his disabilities. They can modify it appropriately or they can excuse him from the assignment. Period. You do not have to be compliant.

Please let him benefit from my DD's experience - do not allow him to get to his breaking point. If you are comfortable sending him back to school while you try to work it out with the psych then try to give him parameters. i.e. If your hand starts to hurt I want you to stop writing. Don't worry about having your color changed - you are not going to be in any trouble. Just tell me about it when you come home for lunch and I will take care of it. Just do your best and don't worry about getting in any trouble.

If you send the homework in undone, perhaps along with a note asking the teacher to call you *immediately* if your DS does anything that does not meet with her approval you will be making clear that you WILL be involved. If despite this he is still pushed beyond what his disability will allow, penalized for his disability or otherwise treated in what you consider an inappropriate manner then pull him. You may need an advocate or lawyer or the district may blink and step in. Your magic words will likely be "Americans with Disabilities Act." At this point that will probably have more weight than FAPE, IDEA, etc.

MoN takes a much more conciliatory approach in these matters than I do. If she is saying that she would have pulled her own child in these circumstances I would take that very seriously. She is very, very wise in how she handles these situations.

I don't have enough time right now to post - will post tomorrow but just want to say my eyes literally welled up reading his "learn to come to school with a smile." My DS and I really can relate and our hearts are breaking for you both. I tho k you've been great advice but I will read and post more tomorrow. I'm not a very religious person but I am going to pray for you guys b/c this is really upsetting me - my heart hurts for you both.

This is beautifully put by MON.

I'm so sorry that you didn't get a favourable response. It sounds like your child is being taught by a team of sadists. I only have four-letter words floating through my mind in response to your son's teachers and administrators.

Irena-- that one is still making me cry when I think of it. It's just so abusive.

Okay tried to take HK's advice and sleep on it but I couldn't sleep so I typed most of this at 1am and slept a few hours and then finished up.

I've never really written up a meeting in detail like this but I really want the disrespect and lack of support for his disabilities documented. There is evidence here of his need for both proper acceleration and support.

So again please don't quote this (I will remove later) but how does this sound? The heading includes location, date, time and those attending with their titles. Can I improve any of this?

--------------------------------------
Introductions were made and copies of DS’ testing results from the previous week on the WISC, WIAT, and WJ were passed around the room.

Mrs. PRINCIPAL asked if Dr. TESTER would be speaking with the teachers to get their perspective. She also explained that the first weeks of school are a time for teachers to get to know their students, establish routines, and assess placement. She stated that we were now reaching the time when those things were in place and reading groups would begin.

Mrs. DISTRICT asked in which Fountas and Pinnell level DS had been placed. Mrs. ME stated that on the Raz-kids website he was listed as K-L.

Mrs. ME expressed concern about her son’s anxiety about school and his physical symptoms of diarrhea and cramping every day before school. She also shared his frustration with having to work so hard to complete material he had mastered several years earlier. She went on to say that he needed something new to learn to be motivated to work with his disabilities.

Mrs. TEACHER said that DS often complained of pain and would not complete his work. She also stated that he was not exemplifying First Grade Skills giving the example that when told to get crayons and scissors for a task, he instead wanted to talk with her about something else, as well as the fact that he was not lining up and entering school with his class in the morning like the other students.

Mrs. TEACHER stated that DS was fine at school and not showing signs of anxiety in her class. Mrs. PRINCIPAL asked if DS needed to come home for lunch. Mrs. ME said this was the only way he was making it through his day and relieving his stress with school. Mrs. PRINCIPAL asked if having a job in the morning would help DS deal with the anxiety and separation issues he experienced at arrival. Mrs. ME thought that would be motivational, especially if “heavy work” were involved as heavy work has been therapeutic and calming for DS. Mrs. PRINCIPAL said she would arrange to begin giving DS a morning job. Mrs. ME asked to receive details of the job to promote excitement about it at home.

Mrs. MATH and Mrs. TEACHER expressed frustration that DS needed assistance to complete his work and was unable to work independently. Both teachers expressed concern about being responsible to say he had completed skills relying on standardized testing instead of individually testing him themselves.

Mrs. DISTRICT suggested DS be encouraged that he needs to show what he knows.

Mrs. MATH stated that DS never contributed to the daily discussion of strategies for single digit addition and subtraction. She also said he would not name a strategy when asked orally. Mrs. ME suggested that it is sometimes hard for a child who has moved well beyond that skill to explain how he did simple addition. Mrs. MATH objected to that suggestion saying that she had other students who could multiply or divide who could answer what strategy they used to add.

Mrs. MATH further shared that she was having problems with DS completing written work in class saying that he named his disability and told her he could not do the math writing she assigned. She expressed concern that this behavior was showing ”learned helplessness” to which Mrs. TEACHER expressed her agreement.

She further complained that he made noises that were distracting and stuck his pencils through his glasses. Mrs. ME mentioned that this was consistent with his ADHD. Mrs. MATH stated that DS needed to understand that it was a privilege for him to be allowed to attend her class.

The meeting ended abruptly as we ran out of time. Mrs ME thanked everyone for their participation in trying to help DS be able to have a more normal school day.
--------------------

It was exactly 30 min long and only the last 20 included the teachers.

I do have one more thing to add... teacher claimed she was "using all 8 of the suggestions" from his OT (there are 9)but her other discussion made it clear the only ones she was using (other than preferential seating were items we sent in from home...one of which--water bottle--she made him leave in his backpack in the hall limiting access to it.)

OK, others have responded better than I could, but...
Why the heck can't a kid have a water bottle at his desk? My kids are at two different elementary schools and all teachers allow this. I know that is minor, but it just seems to exemplify a total unwillingness to be flexible.

Her reason was the bottle was "too sweaty".

I'm so sorry you're having to deal with these awful people. Others have had much better advice; I just wanted to suggest about the bottle--what about one of those 'cooler' foam sleeves, like they have at Target, etc. (I think originally for beer bottles but you've probably seen them). That should take care of the condensation, I would think. Unless she's just making stuff up to be contrary, which does not seem out of the realm of possibility.

Okay-- my take, based on what went on in that meeting?

Your classroom teacher is a rigid person who doesn't have a clue about your child's disabilit(ies).

She's also been talking to the principal and the math teacher, the latter of whom is (okay-- maybe even a little understandably) frustrated by your DS' in-class behavior which sounds as though it may be driven by an inappropriate placement. I don't think that the math teacher is inherently an enemy.

The classroom teacher on the other hand, sounds toxic.

Here's the bottom line: they think you're a helicopter mom from hell, and they don't believe a word you're saying.

SO they are LOOKING for evidence to prove you wrong.

Make a list of what you DO want from a classroom teacher and placement-- first on the basis of disability, and with input from any professionals (docs, OT, etc) involved in his diagnosis/management.

Then do that again on the basis of what his GT needs seem to be at the moment.


You don't need to share those lists with the school at the moment, but you DO need to be thinking about prioritizing and getting as much of the most important stuff out of them as you can.

I think that your DS going home for lunch is tweaking them. This is sending up red flags (for them) re: possible enmeshment.

I mention that only because I've BTDT with my own DD and her disability, also hidden, and also one that contributes MIGHTILY to anxiety. Most people think that we're helicopter parents-- when they learn the truth, though (if they ever really accept it), they instead conclude that we're remarkably "hands off."

Do you have an outside mental health professional helping you strategize here? If not-- I'd line one up. NOW.

Also-- CONSULT with an outside professional and get buy-in first, but then--

I'd withhold attendance until they have your IEP/504 meeting. Period.

Calmly inform the school (at the bottom of your letter of understanding would be ideal here) that you are, on the advice of Dr. Expert, keeping your son OUT of an undifferentiated setting which lacks basic accommodations for his disabilities.

Then-- DO NOT NOT NOT discuss accommodations with anyone again until they find him eligible. Trust me.

HK-- My take exactly. Math teacher has all her info from toxic main teacher who has her very worked up about understandable annoyances she does not understand.

We do have some complications. We had a Psych who is an anxiety specialist and supposedly knowledgeable about gifted (the latter not so much) who told us she didn't know enough about his other issues (true) and left our case. It was a bad fit but that left us suddenly without our mental health piece... And our family doc suddenly moved out of state. We had about 2wks notice. So we lost our primary doc piece. I am working on replacing but it is very hard to find that fit.

I think we are taking a mental health day today. He said this morning, "Mom school is really damaging me. I need extra time with Miss (OT) to undo the damage." He keeps using that word saying, "School is doing a lot of damage. It's the reason I feel so sick."

I am going to polish off my notes and send them to all attending. Then I'm going to spend today working on getting in touch with someone appropriate for medical and mental health.

My husband wants to contact a lawyer.

I think that legal advice is much lower on the priority scale than psych and medical at this point. Now, if the school were to fire back with truancy charges (not bloody likely) then maybe.

I wouldn't-- YET-- send that letter of understanding to the school.

I'd try to get in touch with your previous two professionals for a "quick consult" re: educational issues.

At least that will let you spitball on the bottom of your meeting notes, insisting on a MEETING to determine eligibility. Your position long-term will be MUCH stronger if you take the time to do that now.

Great advice from HK. I would also very strongly encourage you to get the book From Emotions to Advocacy immediately if you don't have it.

With regards to holding him out until the IEP is in place, in the bad old days of our district (3 years ago), they refused to grant an IEP on grounds of inconsistent attendance. This was for a child who needed OT services, but had missed a lot of school with scarlet fever.

I get the need to hold him out, but be aware that a school that might be disinclined to help can use inconsistent attendance a grounds to deny services.

You just had neuropsych testing done -- can that tester be brought in as an expert to educate the teachers?

Lawyers quickly beget other lawyers. Can you find an advocate instead? We've had great luck having a dispassionate person in the room who can keep the gifted and disabled aspects of my children in her head at the same time.

I have attended several of Pete Wright's workshops. The guy knows what he is doing. And I think that in this case he would strongly agree with Geofizz above re: involving a lawyer at this point.

Yeah-- no lawyer. Keep that in your back pocket and hope you never get there.

There really aren't "good" outcomes once you get to that place, just in general.

I also don't recommend withholding attendance just on your OWN judgement that it is the right thing to do.

It's very important to have an external expert that advises non-attendance.

I would not send the letter but would instead keep it for your own records. I would not trust these people and would be concerned that they will use it differently than you intend. A summary would have been good to share if you accomplished something at that meeting - this way it just documents that they raised concerns. It does not come across as you rebutting them - time ran out once THEY got their concerns on the table. Very convenient....

Does your DS have a formal anxiety diagnosis? I would bring your pediatrician into the conversation ASAP. Can you reach your doctor that relocated? You are going to need someone soon.

Our pediatrician really wanted DD on homebound tutoring when her anxiety started to get bad in first grade. She said "If they are intentionally antagonizing her anxiety she should not be there." I used that quote over and over with the school. We never had to do it but having the plan in place made a huge difference.

According to the consultant a letter from the pediatrician saying that the child will be unable to attend school *for 3 weeks* will trigger the homebound tutoring requirement. This would mean that the school district would need to provide an individualized education for him and send someone to your home to provide the instruction. If he has an anxiety diagnosis and is experiencing the physical symptoms you describe it may be a good solution. Especially with the teacher stating that he is complaining of pain and the math teacher confirming that written work is an issue.

I agree - not time for a lawyer yet but definitely an advocate. Some people here have found assistance free of charge through their states. We had to hire one privately. Your State Dept of Education may have some names. There may also be an advocacy group for gifted education in your state if your district has a Gifted Coordinator. They might be able to give you some names too. If your school psych is really understanding the situation she may even be able to give you the names of some people.

I have to say again how sorry I am that you and your son are dealing with this. I don't know if it makes it easier or harder to know that my DD and I were not the only ones...

Okay well I now have an advocate. We are meeting tomorrow to plan. I found a 2e resource who used and recommended her. Big background in public and gifted with several years of advocacy experience.

I have messages in to Neuro-psych (he is out of state) and previous psychologist who is about an hour drive but was close to previous school and worked with us last year. He's a former gifted teacher who was good with school strategy but not so effective for counseling purposes.

I told my husband similar things as you have mentioned about bringing in lawyers. I personally will drop it before we get to that point most likely.

In other good news, the advocate has connections to a well respected gifted that we have not investigated before (distance). So perhaps a backup if we don't get too financially strained to pull it off trying to salvage the "free" option.

HK-- I share concern about him not attending. He is physically sick but I don't want to push that. I am working hard to get an expert to make a recommendation. I'm hoping one of the mental health contacts can make that call who already know him and his history.

These situations infuriate me and I am really sorry you are going through it.

This is like them saying to a kid in a wheelchair "we would really like to see you have a better attitude about pulling yourself up the stairs on your elbows before we go through the trouble of building a ramp"

Pemberly missed your post. I called the group our doc was in (don't care for the others quite so much) and they will see him in the morning. New doc we have never met. Praying for the best. Thanks for the 3wk detail. I do think he needs to stay home till accommodations are in place.

KJP exactly. Your wheelchair example was so accurate.

Thanks for sharing your brains and keeping me sane! You are helping me so much stay on track.

I have a photo of my child taken last year (before we understood why things were so bad--prediagnosis and pre school change) while shopping for a toy for his best friend's birthday. He just turned 6 and it is haunting. The look on his face and the glaring bald spot where he had pulled out his hair from stress. Right there in the toy aisle this sad pale ghost of a child. I still tear up to see it but thank God I took that pic because it shows how bad this can get for him... I feel dangerously close to being back there again with the incessant nightmares and all.

Neuropsych will call tonight or tomorrow...

What is your back-door exit strategy?

What will it take to trigger that plan?
(DO NOT ANSWER THOSE QUESTIONS on a public forum such as this one-- but do have answers. For yourself.)

I'm really sorry. It sounds like you've done a lot of really positive things today in order to nudge the situation in a better direction for your son. I truly hope that those efforts are successful.

HsppilyMom, I am soooo so sorry the meeting didn't go better yesterday. I am also so glad you've contacted an advocate.

FWIW, my first question when I read your meeting summary is: Do you have a date for either a 504 plan meeting or an IEP eligibility meeting? If you don't, you need to make a written request for one. The cynical side of me feels that your school is going to try to say that the meeting yesterday was just that - a discussion of whether or not your ds is eligible for an IEP eligibility review... and really it wasn't. Follow your advocate's advice - for sure - but I'm guessing that he/she will want you to put in a written request for a formal assessment for IEP eligibility. I think you're still waiting for the report from the neuropsych (?) - how long do you think that will take to get? If it's just a matter of a few weeks, put in the written request now and set the date for the meeting at a time you'll have the report.

I would also try to wrap my head around separating out the LDs from the giftedness in terms of advocacy for now. You are still advocating for both, but your ds *really* needs to have appropriate accommodations for his LDs in place *now* so that he can show his knowledge and not be held back long term - which can happen both because the school refuses acceleration but also because he doesn't learn how to use accommodations and therefore can't perform to his full ability later on. Plus I suspect that at this point in time, his anxiety is driven as much, if not more, by the LDs not being accommodated and being misunderstood, than the lack of proper acceleration. It doesn't mean you're ignoring the gifted needs, just putting them in 2nd priority for a short time while you make sure his LDs are acknowledged and accommodated (and remediated if that's part of what he needs).

We've been in a very similar place with our school when advocating for an IEP and accommodations for our ds. It took quite a toll on me, to be honest. Even with the help of an excellent advocate and even after we'd received the IEP. That was only half the battle (or maybe less, in the long run). The school didn't follow through with most of what was written into the IEP, because they'd never wanted ds to have an IEP in the first place and they didn't share a true concern about ds' needs, and their focus moved from the student to proving the parent wrong and proving services weren't needed. That continued long after the IEP was signed and in place. I hope that your situation doesn't play out that way, and that your advocate is able to help you be successful in getting the accommodations/services/ and understanding from the school that your ds needs. I only mention this because at some point in advocating through all the brick walls etc that the school kept putting up, I realized that I was spending a ton of energy fighting the school when what I really wanted to be doing was spending all that energy helping my child. We were at a point with our school when we had been advised that we could (and maybe should) seek legal counsel, and we had an offer of legal advise pro-bono, and that was the point I realized too much of my effort was going toward fighting. My ds had also matured to the stage where he recognized he needed help, he knew he had an IEP that meant the school had goals/etc that they weren't helping him with, and he saw that I was continually advocating and the school really didn't care what I had to say. I knew from talking to friends who are teachers in other schools in our district and to a few professionals who'd been involved in advocating for students and families through legal issues with our school districts that if we went the next step of bringing in a lawyer we would just be prolonging the fight with little hope of getting what my ds truly needed. At that point in time I realized it was time to switch schools. And *wow* what a difference a school can make. Our new school has teachers who are happy to allow our ds to have accommodations. It hasn't all been smooth sailing but it has been so much better than sticking with our previous school.

Anyway, you aren't there yet and hopefully won't need to be But I just wanted to throw that out there - maybe as a point for your dh to consider - when you get to the point (if you do) that you really think you need a lawyer, maybe what you need instead is a new school.

Has your school psych contacted you yet (or vice versa?) - I'm just curious what her take on the meeting was.

I also saw you had a "district rep" present at your meeting. FWIW, during our process, our district rep was usually quiet unless we brought up a counterpoint to something the district tried to pull on us, and then she would step in and assert that we were correct. So she wasn't a proactive ally, but she was there to be sure the school didn't do or say anything that would come back to haunt them at a later date if the situation had ever moved to legal proceedings, so in that way she was an ally.

Sending you a big hug!

polarbear

HappilyMom - I agree with Pemberley and others who suggested *not* sending this letter at this point in time. I do think that it's very valuable that you wrote it for your own future reference I'd also think through it when you have some time, because some of what was said at the meeting, when looked at through your eyes, may shed light on the impact of your ds' disabilities and therefore could in turn be used in advocating - for example, if this comes up in a meeting again:


I (you) would point out:

Wrist/hand pain is common among dysgraphic students when they have to use handwriting. (I know you know that - I'm just stating the obvious as you would when explaining this to the school staff). Your ds needs to use keyboarding to avoid pain; he also may need OT to teach him proper pencil grip, posture, etc to avoid pain. Avoiding the crayons and scissors task does not mean your ds doesn't have "First Grade Skills" - it most likely means he wants to avoid a task that is physically challenging for him due to his disability.

And then move on to point out this is why he needs ___ accommodation - so that he can demonstrate his knowledge (and those lovely "First Grade Skills").

polarbear

Or that he simply can't stop talking. My DD7 is in second grade, and it's hard to get her to stop talking and do anything at all. But if a teacher wanted to base acceleration or enrichment on that, I would be digging in my heels!

Happily mom, just wondering if you have had him checked for connective tissue disorder or a neuromuscular disorder? I think you may know this about my DS already but my DS has both dysgraphia and Ehlers Danlos. I feel like the school(s) seem to poo-poo the dysgraphia, refuse to recognize the disorder itself, refuse to believe it, understand it, etc. (heck, my school just doesn't even say the word as if it will, as an affliction, disappear because they do not utter its name). However, they seem to be quite different with the Ehlers Danlos. Ehlers Danlos Dx SEEMS (so far) to be to them real, physical, and not something to just brush aside as the maniacal delusions of a helicopter mom who shopped around for the psych to give her the Dx b/c she can't accept her child really isn't gifted and is just an average kid who actually isn't even intelligent enough to master the skill of handwriting (gee, that, I think, is the first time I put into words how I do believe my son's school perceive(d) me). I feel like when I would push for anything on the basis of "dysgraphia" there was a weird dismissive sense I got from them. Sending them a report of geneticist who specializes in connective tissue disorders which states how painful it can be for DS to write and how pushing him to do so is not only not going to help but can physically harm him seems to change the dynamic and attitude of the school (I couch all this with the disclaimer of "so far" because we are only in our second week of the school year). Anyway, if your DS is in pain and if he has dyspraxia (which is often according to my son's doc co-morbid with ehlers danlos I do think you should look into it.

Also, just want to give my experience on the attorney aspect. I was afraid to bring in an attorney thinking that would make things worse and I am certainly not in favor of bring in an attorney too soon. However, DS's school really shaped up - really and truly when I told them we were bringing our attorney with us (and I found one who had successfully gone against this school district before so they knew her). Things really got much, much better right away when I did that. They did not want have to pay their attorneys. Nothing I did before, not even bringing in an advocate changed their attitude and behavior. I know all schools are different but I wouldn't necessarily be 'afraid' in the least to get an attorney involved at this point. It is certainly not going to make things worse and in my opinion could very, very likely get them to stop their bullying behavior. Get a good one though. Preferrably one they know of and have some fear/respect for. JMO.

ETA: And I still have my attorney on retainer. So I can literally just say "let me put in a quick call to my attorney on this" if I want./need to do so. Let me tell you, they are now, right from the start, acting ethically as opposed to trying to get away with non-ethical/illegal bullying behavior etc. It really changed the power dynamic (even though I am myself an attorney!) because they KNOW I will reach out to my attorney in heartbeat. The money was worth it... I thought to myself "I could spend a couple thousand on an attorney or end up spending 30,000 a year on a new school that would work with DS." I decided the attorney was definitely worth a shot. And the school shaped u right away as a result and I haven't even spent $500 on her yet. That's how fast they shaped up when I introduced her into the situation.

Thank you for your wisdom and experience. I am taking all this in. Is it a geneticist who would diagnose Ehlers Danlos?

I want to add that I first requested the contact person to apply for a 504 per district policy on 7/13 and on 8/27 per the sage advisors here I wrote the following to the designated "gatekeeper" at our school:

I am requesting an immediate evaluation of eligibility under Section 504 for DS. His Developmental Optometrist and OT agree that he qualifies, and that accommodations need to be in place in order for him to access the educational environment. I know that none of us want DS to miss school with panic attacks and anxiety.

I also wrote how not having his accommodations in place was already affecting his ability to access the learning environment and that I was uncomfortable waiting to see how he would respond without them.

Good to look back. Guess we know the answer to that one now huh?

Well I think the old Psych is a strike out.. I expected it might. He's very pro-teacher (was one for a long time) and is used to working with older kids so very suspicious that he's not getting the full story. He doesn't have children of his own and also doesn't seem to "get" testing that well. He's catching up to speed but I'm not feeling like he is on board. He wants to "keep DS in school".

We will talk again in the morning followed by DS going to the new doctor followed by meeting with the advocate.

Teacher just sent home an email complaining that children did not do the writing assignment she gave yesterday and saying the children must fill out their scholastic book orders themselves to turn in tomorrow. UGH! More writing.

Irena, are EDS and other connective tissue disorders diagnosed through actual genetic testing, or just through physical exam?

DeeDee

I will answer this one. It depends on which connective tissue disorder.

Some variants of EDS can be identified with genetic testing and some can't - yet.

Ditto. I ultimately took DS to a geneticist at the Children's Hospital of Philadelphia connective tissues clinic.

Even those that don't have a gene test are still diagnosed by a geneticist.

I have EDS type III. There is not currently a genetic test for this type. I was diagnosed by a geneticist after a very detailed medical history intake and physical exam.

My friend and her children have Marfans. They were also diagnosed without genetic testing. She had been given the run around by doctors and school personnel for years when she finally found a doctor that took her concerns about her son's development seriously. He was diagnosed with Marfans and experienced his first of two aortic dissections a few months later.

So would you bring this up to a general practitioner or search out the geneticist?

Happilymom have you read about EDS and other connective tissue disorders? It helps to know if you think it fits before talking to a generalist who will almost certainly have no clue and be sure it's not that.

I have been reading up on it. Some things seem to fit but it's not very clear cut. There is a pediatric geneticist I've found...

I've been doing a lot of thinking. Spoke with Dr. Amend (our tester) who has been amazing. I'm feeling like the situation at school is so bad and my guy is so young that I don't see how it will be salvageable or worth the cost (advocates and much more mental health appointments and stress for all).

I believe he is a hard fit with willing instructors which we do not have. All of his diagnoses have occurred in the past 6 months and we are still learning about them and what works.

I'm questioning how much improvement in that environment could be possible with even the best advocacy. The level of stress (and damage to my child)to get there seem like a much higher cost than I want to pay.

There seem to be more options and more expectation of the use of technology with age and finally elimination of coloring. Their 1st grade program is shockingly unacademic and seems behind the times. He needs to learn to type and use a dictation program. He's just too young to be put at the mercy of such cruel and rigid people who would mock a child's disability and punish him for properly advocating for himself.

I'm going to talk to the advocate and think it over this weekend but the responses I have heard from those who work with bad school situations regularly is convincing me that this one is unlikely to be worth the effort this year.

I can homeschool and thanks to those who post here I have a pretty decent idea of how to do that with my unusual child.

Going to the doctor in a bit and thinking this through further.

HappilyMom, there just comes a point when you look at your child, you look at the school, you look at the stack of information that you're using to advocate... you look at the rate of progress on that advocacy front, and consider the energy involved...

and you wonder;

Is it better to spend this energy directly WITH and ON my child? Or continue to spend it on his/her BEHALF?

Because the time/energy investment is somewhat similar. Different parents/circumstances give different results, but for me the turning point was in realizing that I'd spend LESS time if I DIY'ed, and it would be much closer to meeting my child's needs. It also would mean that my DH and I wouldn't spend most of every day wondering if we'd see her alive again.

It may be worth pursuing an IEP even if you homeschool-- I recommend that, in fact, as it establishes the diagnoses for the purposes of future accommodations which may be needed in testing, or college.

Oh! HK how do you pursue an IEP when you home school??

A district is STILL obligated under child-find to locate and provide services for children who need "services" (think speech therapy, OT, etc.) as part of that educational plan.


There, though, you're highly advised to seek out a parent advocate who has experience, preferably LOCAL experience, to draw from.

Warning - I'm typing on my phone so I apologize for typos, etc

It is scary how similar our situations are Happily. I assume you have followed our saga as I have documented it here. The good news is I have laid a roadmap of sorts for you if you choose to follow that path. It has been hard. It has been taxing. It has been expensive. The good news, though, is that my DD is about to start an out of district placement that should finally provide most of what she needs.

Her program will cost our school district a small fortune - there is no way a parent could cover all the costs privately unless you are among the wealthiest of wealthy. This is the benefit of fighting for FAPE through your local school district. If they had acted in good faith and treated her with good will a similar program could have probably been provided in district for a fraction of the cost. I think they have learned from this experience because I have 2 friends - one with a recent 2E identification and one with anxiety - who just yesterday were telling me how much support their kids are receiving and thanked me for the battle that I fought. You CAN get your DS what he needs through your local district but you will probably have to fight for it and fight hard.

The reality is that parenting kids like ours is hard. Really, really hard. There is no easy answer. There is no right answer. Whatever path will get your child what he needs is a right path.

Don't make any decisions before you have a frank discussion with your advocate. Feel free to pm me if you want more specifics.

Good luck and enjoy your son. Taking time for the fun things is what kept us (sort of) sane.

http://www.hslda.org/strugglinglearner/sn_states.asp

I'm not sure how updated it is so I'd ask your advocate about the specifics and how homeschooling families are actually treated. If your state does not provide SPED services to HS students then you could look into online public school charters. They are obligated to provide SPED services and accommodations.

You might want to ask advocate if there are ways to keep your son at home while sorting out the eligibility issues and upon his return, if his 504 or IEP is not followed, you have additional legal recourses.

Only have a moment but met with the Advocate... WOW! She is wonderful! She has given me an approach to re-open the discussion at school by sitting down with the teacher to talk about Emotional Safety. She is a 2e expert and presents often. I've sent an email and have a plan. I also invited the school psych and social worker to join us and share their expertise.

She told me her story about being a rigid teacher in her past and how she learned to approach teaching and life differently... She was very wise.

So I'm trying to meet Monday for a heart to heart about making the classroom environment safe and supportive for my child. (Social/Emotional Learning is a big initiative there and I tied my email in to that and made it very personal.)

Family Doc referred us to a Pediatric GI and won't be helpful beyond that. Advocate gave me a referral to a new local Psych that she recommends for us.

How wonderful to have someone who is so wise on your side!

So glad you found an advocate that can help. That sounds like a wise strategy.

I'm so impressed at how much you are getting done this week. I know it feels dreadful that you've not gotten things fixed for your son, but you've made a lot of progress by assembling your advocacy, medical, and expert team.

Well... My husband and I sat down last night and decided that the battle wasn't worth the cost with the fragile state our 6 yr old is in. He has been begging to "do homeschooling" for most of the year.

I got an email back with the teacher's response to my request for a meeting. She says she'll "hear" about Emotional Safety but she wants to tell me about "school/classroom expectations" and the ideas she has to try. Our advocate is terrific but our teacher is truly toxic.

With the immensely difficult things we are dealing with in our marriage and some other significant stressors, we just feel like the road at school is longer and harder than we can currently manage. And frankly, even the successful result of good hard advocacy still doesn't resemble what our child needs. I don't want that to be true but it's clear that it is.

My mother said, what if we decide to go back in a year or two? I told her it was unlikely. He is currently in 1st and needing about 4th grade level work across the board. He makes more than a year of progress in an academic year. School ends at 5th there. I don't think I'll want to place him in middle school in a year or two either. So here we are in our PG 2e boat where nothing really fits.

I'd still go to that meeting with the teacher-- just to be crystal clear in your mind and not have "I wonder if..." hanging there unresolved.

And you never know-- it's possible that she will say something that is revelatory to you. (Possible)

I suspect that it won't be something that you'll WANT to hear-- and that it will make you angry. But it's probably still worth hearing so that it's in the back of your mind.

Why do I say that? Well, because it's far too easy to scaffold 2e issues in a home environment-- up to and well beyond where such issues would be deemed "unacceptable" in a classroom setting... and in the context of an emergent problem, those are things that you want to know about from an unbiased observer's perspective so that you can (if needed) identify them and be AWARE of them. 2e problems can go unidentified in a homeschooling setting because of the flexibility.

Your ds is young enough that some of those things could well still be just at the horizon.

So I'd go to that meeting and listen. I wouldn't necessarily take it all to heart, or place my child back into her care, mind you... but I would tuck away what she says, and be observant as a homeschooling parent.

I hope that makes sense.

I agree with you both... but I don't want to rearrange my schedule to get to the meeting. I'm very clear on her thoughts from the Wed meeting. She wants him to shut up and color. It's a bother that he wants to interact with her and can't get the coloring done. Other than when his disability was punished, he has perfect behavior in her class.

I'd rather send an email that we are officially withdrawing him and move on. It is far from a good environment from curriculum to teacher to the overcrowded playground (tiny tiny play area with 70 children at once!!).

I have a pretty clear understanding of the classroom challenges with him and how poor the fit is. That was the only thing we truly accomplished on Wed at that big meeting.

Sounds as though you're clear in your own mind, and he'll be pleased. Congratulations!

Here an email would not officially withdraw the child. So make sure you know the policies. Here you have to write a letter of intent to homeschool effective such and such date and that goes to a particular office at the district (and I get a copy of it where it is stamped and dated received)....then you go to the actual school and sign some forms and you have to indicate where you are withdrawing to...and they code it withdrawal to homeschool (as opposed to private or moving out of district). Basically they need to know where to send a transcript and need to make sure you don't have any books (library or text books or other materials) that need to be turned in or paid for if lost.