ADMIN calls again! Anyone have a kid with ABI or Tourette"s

buddy

New Member
I admit this is sticky for them and I sympathize. What do I do with a kid who is actually unable to stop saying things, sounds an inappropriate words.

Warning: this post contains graphic language, but it is in an attempt to explain...dont read if offended by naughty words

He has this new one that has morphed from the time he was little. I think I had explained in another thread about how he says "lick my p*n*s" which came from when he was in preschool and he imitated everything to the last little detail (eat, sleep, walk, poop, etc.) like a dog and/or cat. People were shocked and so it got reinforced (negatively I understand) but it got attention so it increased. It has come and gone in waves over the years. Now he heard some neuro-typicals in play saying when they were fake upset with eachother "suck my b*lls." He laughed and said "suck my p***s" which is the new rote phrase he says on and off thru the day. I have to balance calling his attention to it in order to stop with not increasing the behavior.

So, it was clear on Wed. he was having seizure symptoms and these things get worse when that happens. He said it not in his office area but in the classroom. There is another student there who eggs him on and has been teaching him all kinds of new words so both of them got out of hand. One girl got very very uncomfortable and her parents called. I would have too...need to make sure there is nothing inappriate (or more inappopriate) going on in the class and that these kids are not predators. I got a call that these folks called and so NOW they are deciding to punish him. And it is so logical....they are extending the no going to lunch in the lunch room consequence. For another full WEEK. It will make no connection to him and if it does at all, he still wont be able to stop if those words push out of his brain.

I offered to meet with the parents to reassure them. I gave the one admin who understands best permission to tell them more than they would normally do so they can be assured this is not a kid who is not monitored (1:1 aide all the time so no chance of issues to another child) and not from a sick, twisted family.

Anyone have a kid who genuinely can't stop verbal outbursts? It has been life long, and varies between sounds and words and lately is this phrase and a grunting sound. So hard to explain to people. and admin always protects those that threaten, I doubt they have said anything to classmate's parents when I complained about his teaching mine about sex words....arrrgggg.


sidenote: the phone fear discussion from a few days ago: when my phone rang, heart pound, I answered and it hung up, I called back twice and it hung up twice....called the office and it still did, had to run to the neighbors, they let me use they let me use their phone, and the whole time I felt that adrenalin rush...I HATE that. Finally took battery out of phone and it rebooted...it works now but that was an awful feeling... I am still wound and it was 1 hour ago.
 

DDD

Well-Known Member
At one time I feared that difficult child#1 might have Tourette's because he was having tics. As a result I did read alot about the disorder and do know that a friends daughter is a leader in a National Tourette's organization which includes (not sure how) communication between parents. Why am I posting? I feel that the consequences of his behavior don't match with what I would anticipate. I'm sending you a hug and also wondering if you have checked the net for Tourette parent support. Perhaps there are workable IEP suggestions there. Wish I knew more but I do care. DDD
 

JJJ

Active Member
Have you contacted http://www.tsa-usa.org/ ? They may be able to help.

Eeyore has some verbal tics but they are rare enough that the school deals (when overwhelmed he shouts "shut up" etc)

Sadly, the fact that it is "sex words" is going to cause everyone to freak out.

It is illegal to punish him for something he cannot help due to his disability. But they do have to protect the other child.

Does anything interrupt him? Maybe if he starts with the verbal tics, he could be sent on an errand out of the room. The teacher would ignore the tic and just 'suddenly' need a box carried to the office. Or, sometimes, the girl(s) could be sent on a mission out of the room.
 

buddy

New Member
At one time I feared that difficult child#1 might have Tourette's because he was having tics. As a result I did read alot about the disorder and do know that a friends daughter is a leader in a National Tourette's organization which includes (not sure how) communication between parents. Why am I posting? I feel that the consequences of his behavior don't match with what I would anticipate. I'm sending you a hug and also wondering if you have checked the net for Tourette parent support. Perhaps there are workable IEP suggestions there. Wish I knew more but I do care. DDD

That's a great idea because with his high dose of Concerta plus the ABI this has been an ongoing thing, not just verbal but repeated movements etc. that are not the self stimulant Autism Spectrum Disorders (ASD) kind he does. More sudden jerky kinds. Often looks deliberate but he is alone for many of them and still can't stop. Neuro says he can't help it but go convince anyone else and especially when he WANTS to seem like he can stop it so he will never admit to THEM he can't control it. he doesn't have tourettes but similar issues.
 

susiestar

Roll With It
I would have a FIT. First that they didn't separate him from this other kid, that the 1:1 aid is not stopping this other boy teaching him sex words and egging him one (isn't that part of the job description? you know - being with him all the time so this doesn't happen or is greatly reduced?), second that he can't go to lunch for behavior done in class.

Punishing him for seizure behavior is like punishing him for breathing or blinking. He has the same control over these phrases as he does, probably even less control because you can breathe faster or slower and you can control blinking to some degree.

PUSH them to punish the other boy because this is not appropriate. Then have a fit because they are NOT allowed to punish him for manifestations of his disability. Period. It is NOT negotiable or optional. Well, if you are in the US it isn't. Even if it is, this is NOT an appropriate punishment. Have him sit separate from other kids with his aide for a week if they have to do something. But seriously, where was the aide when the boy taught him this? Has anyone answered that question satisfactorily?

Check out the tourettes website and also call your neuro to get a letter or something explaining that this is seizure behavior and you are working to control it but that difficult child is NOT to be punished for it. I am SURE that the neuro is aware of his inability to control this. Point out to the school that this is only done because seizures and because the other kids reinforce it and told him it was okay - that was the start of it, but then it got stuck in his brain and now he can't stop it.

Also DEMAND that the other boy get WHATEVER punishment that difficult child gets because I am VERY sure that the other boy knew it was not okay to say and he taught it to difficult child anyway. Ask the school to let you explain to the other parents if possible. Here when a child has a problem like this they educate the whole class on the disability in a general way and teach them acceptance and tolerance. Doesn't always work on the teachers, but the kids are awesome about it at all levels of school because it has been done for over 20 yrs here. So a child with a problem may get some teasing and bullying but the other kids usually tell the teacher or will tell the parents what is going on if the teacher won't handle the bullies.

The tourettes foundation has some AWESOME info to help educate teachers and classrooms. At least I am pretty sure that is where husband's coworker found it. A guy he used to work with had a son with tourettes and at one point would blurt out things like your difficult child along with various racial slurs that other kids taught him. Things said with emphasis are often repeated, so this man and his wife would use the same type of emphasis with other, more acceptable words and one year were able to get the teacher and other kids to help. It made a huge difference.

Maybe at home you can put swear type emphasis on words like fudge, baloney, or whatever seems like it might work. It couldn't hurt and might help replace these words, esp if you gave him some "consequence" to be the "negative" attention and shock that originally made these words appeal to him. While he isn't a toddler, this is waht we did wehn my kids picked up swear wrods from us when they were too young to understand that they couldn't say them. This is something the school can help with and is a positive step that has a lot better chance of helping him and stopping the phrases than depriving him of the chances to learn appropriate social behavior in unstructured settings like the lunchroom.

Has anyone ever told you why they allowed him to sit with a group of kids in the lunchroom other than the ones who were approved to help him with social skills or at the sp ed table? I would be asking why that was allowed to happen when they all KNEW that he could not handle being on his own in an unstructured social setting. If you don't get a decent answer on this, maybe it is time to speak with the district sp ed director or the superintendent of schools to see why tehy allowed this to happen?

You probably can bring an attorney into this and get some help in pushing the school to follow the BIP rather than doing the stupid things they are doing. either the school atty would know that this is a HUGE no-no (punishing a child for the manifestation of his disability) or know that you can get a private atty to push the issue.
 

keista

New Member
((((HUGS)))) Sounds like admin just dishes out punishments to him to make themselves feel like they are doing something about it. Sorry. As annoying and frustrating as that is, as long as it's not harming him, I wouldn't pick that(those) battles. HOWEVER, I would be harassing admin to do something about the kids that are feeding him words and egging him on.

Don't have this situation, but thought of a possible idea. Could you do an open letter to the class parents? Explain the situation, AND mention that when other kids "egg him on" it gets worse, so everyone's assistance is appreciated. Or maybe get someone into the class to teach about touretts?
 

buddy

New Member
Yes, and that is what is so frustrating, ONCE AGAIN the behavior plan worked....he stopped. It was an especially anxious day because he had an ortho emergency and I told him I would call to let him know when we needed to go in. He hates to miss school, I got it for after school but while waiting for the call and then realizing he was gonna miss the bus he just went over the edge a little. He got back into his "green zone" and I was told it all worked out. I of course talked to him about it and said if you need to say something it has to be different words...sigh. again, big risk ..but we thought of some.

But that political pressure. So another parent calls and everyone panics. Instead of education etc. It was decided that they were going to do an educational thing (again with my permission and difficult child wont be there) to explain some of the issues the kids need to ignore. BUT that has not been done yet. I really feel if they would have followed thru then the girl would not have been so upset. I can't speak for what the other Autism Spectrum Disorders (ASD) kid was saying, they wont tell me and my difficult child wont tell me either. It wasn't at the same time, just that it triggered what he was doing they said.

So frustrating, he has his own "office" and he goes there, they dont care at all then. i read that it is actually discrimination to punish a child FOR their disability. I may have to pursue that if these nimrods dont turn this around.
 

BusynMember

Well-Known Member
This is a horrific failure of the school district. I would actually call your state Department of Public Education and ask for the Special Education Advocate, then explain everything to that person who can and probably will get involved. To keep going to people in your own school district, who are unwilling to acknowledge and/or accomodate his serious disability and PUNISH him for them, is not going to help. but the DPI is important to each school district as they can investigate and withhold money if they don't like something. That has been the only place that has helped us at times when we had run the gamut of everyone in our school district and gotten no help from anybody. Seems they are all members of the same good ole boy/girl network in a school district and at times to have to overstep them for the sake of your child.

Your son has been through more trauma than most of our kids and has been disabled because of serious medical issues. If he can't help w hat he does, the school needs to find some way to deal with it and not harm his self-esteem in the process. I would be livid.

You Department of Education is usually located in your state capital. Do NOT be afraid to make waves. Although some people are afraid that to make waves means your child will be picked on, we found the opposite to be true. We found that if they knew we'd go to people who had authority over them, they actually treat our kids better than other kids are treated, and that's fine with us.

Good luck and keep us posted.
 

DammitJanet

Well-Known Member
you know..something Susie said made me think.

You said he gets things stuck in his head that are funny to him. What if you could teach him something really funny and maybe even naughty...but might not get caught by everyone else. Like swearing in Mongolian or something. Or maybe even a slight tongue twister. Slickety pansies.
 

buddy

New Member
Don't have this situation, but thought of a possible idea. Could you do an open letter to the class parents? Explain the situation, AND mention that when other kids "egg him on" it gets worse, so everyone's assistance is appreciated. Or maybe get someone into the class to teach about

Great idea....it goes along with the disability education we are planning for them but they are really resisting my input and they have promised me I can edit it all. I think I am going to email teacher and this admin and tell them we need to have it ready to go by Oct 31 (our next bip review) so that we can support him better, he has enough behaviors to work on. Making him feel badly for the ones he truly can't control is just going to make everything worse.
 

buddy

New Member
This is a horrific failure of the school district. I would actually call your state Department of Public Education and ask for the Special Education Advocate, then explain everything to that person who can and probably will get involved. To keep going to people in your own school district

Thank you so much....(bawling now)..... you are right. I will do all of this. I have already called my advocate so hopefully they wlll call soon. I feel awful because truth is I believe this school and the Special Education team have done more for my son than ANY school ever has. And i really agree with his BIP. But admin keeps derailing it and I am just plain sick of it.
Years ago when I called the state turned out the investigator I got assigned to had the same name as the principal of the school where he was being abused. I hoped a coincidence....NO....he was her hubby. SO Igot another one and asked her straight up if she knew the guys wife and she could be unbiased. She said absolutely and indeed the dist. got in huge trouble and the entire district had to change policies. I never sued or anything, just wanted the right thing done.
I will call tomorrow when I can speak well.
 

buddy

New Member
Maybe at home you can put swear type emphasis on words like fudge, baloney, or whatever seems like it might work

Yeah, especially if I say I dont ever want you to say this...... play on his oppositional side!
 

keista

New Member
Maybe at home you can put swear type emphasis on words like fudge, baloney, or whatever seems like it might work
Yeah, especially if I say I dont ever want you to say this...... play on his oppositional side!

I swear at home in a different language. I told my kids they were allowed to as well. DD1 is the only one interested, and has actually learned a few swear words in several languages.
 

buddy

New Member
found this on writeslaw.....printed out the entire article....I always support safety and if he is endangering anyone by running and bumping hard into someone etc..he has to walk with an adult side by side before teh gen ed kids get out, etc. logical consequences (which he happens to hate, he does not want to be different so it is not a happy, getting attention time)
3. The IEP as Vehicle for Effective Behavior Management Children who have disabilities that prevent them from understanding or responding appropriately to components of a discipline code or school rule should have those exceptions incorporated and addressed in their IEP...... Examples of IEP discipline issues: A student with Tourette's Syndrome may may repeat vulgar, obscene words or bark over and over. Obscene language may violate the discipline code, but in this case is out of the child's control. Working with the child, family and physicians, the special education and related service program should determine the best possible plan to reduce and compensate for the disruption that this syndrome causes. Another child may be extremely cognitively challenged and need very concrete examples of what the school discipline code means, just as a child who is deaf or visually impaired needs special accommodations. Children with Attention Deficit Disorder, generally, should not be suspended for inattention but their IEP should contain goals, support and specialized help to increase attention and sustained effort. The same can be true for a child who is severely depressed or withdrawn and therefore inattentive. This behavior should also be comprehensively addressed to increase learning and productivity. A child with autism who bangs her hand on her desk over and over cannot be treated the same as a child or group of children who are doing the same thing to deliberately disrupt the class. A child who cannot speak clearly or communicate feelings or ideas can become extremely frustrated and may stomp out of the class or toss his pencil across the room. Training in finding alternative methods for communicating and for coping with frustration must be in place before the disruptive behavior becomes routine and results in disciplinary action, which may only increase the disruptive behavior. All of the above examples require an effective individualized intervention plan documented in each child's IEP. If such a plan did not exist and a disciplinary action were taken resulting in a suspension, expulsion, an arbitrary change-in-placement or illegal removal from FAPE, it would be a violation of the child's civil rights.
In IDEA 2004 SD gained the right to remove in certain situations for serious hurtful behaviors/weapons/drugs but there is a due process process still to follow.

It is the responsibility of the IEP team to review the discipline code and determine what specialized help and instruction the child may need to understand the code and consistently demonstrate the appropriate classroom and school behaviors conducive to learning. The team should identify and address the difficulties that may occur and may be related to the child's disability, and establish plans that will reduce the chance that such infractions will occur. The team should plan to provide adaptations and compensations for those behaviors that require an intervention plan and also address those behaviors that may remain unchanged due to the complexity of the disability. Behavioral goals, like goals for reading or other elements of the general curriculum, should be incorporated into the IEP and not be developed as a separate document or plan. To design a separate "behavior plan" implies that such plans should be treated differently, apart from academic functioning. Additional distinct "behavior plans" could also cause prejudice and establish a sub-set of children within special education (those with behavior plans). There is evidence that effective individualized academic goals and services reduce frustration and behavior problems.


Stuff we all know-duh stuff- but when it is in writing it makes it a little more believable to those who think otherwise--or just dont think. I need to see if there is an update to this article because a few things changed (not what these paragraphs say) in IDEA 2004 including the specific wording that if a behavior is a manifestation of the disability the administration can view the situation on a case case basis instead of going by the district code of conduct. In addition to the other suggestions, I have been told by a friend who used the mn disability law center that this would be a case they would likely take. Their website says to call as soon as any pattern of suspensions start and not to wait until 10. So, I will do that.

 

InsaneCdn

Well-Known Member
Probably wouldn't help in this case, but sometimes...

Two generations back. Granny's sisters lived on the edge of town (two couples, two homes on same property, no kids). Down the road a mile or two was another family, with a "little gurl" as Granny would say - when pressed, the Aunties put her at about 8 or 9. She was the "sweetest" thing and the "brightest thing" they ever laid eyes on.

But... the Aunties said "she swore so bad she could make a bartender's ears fall off". They were shocked, being proper Brits. The girl spent a fair bit of time at their place, so the Aunties had to do something about it. (Parents wouldn't - she spoke what she heard.)

Their tactic? They came up with a "proper English statement" for every expletitive in the book. And consistently replaced every expletitive she used, with a substitute term that started the same or sounded similar. OMG became Oh My Goodness... I have no idea now what they all were (Granny's first son is 90 now, so I can't exactly ask)

It took TWO YEARS. But they were around to see this girl grow up and marry... and as an adult, NOT known for the off-color of her language (the color... yes. people often wondered where she came up with such expressive statements...)

Now - this was probably closer to neuro-typical with extreme bad habits. But... if nothing else works...
 

susiestar

Roll With It
in my opinion you need to contact that law place now. DOn't wait for suspension, suspension from the lunch room is enough, in my opinion to call it a breach of his civil rights.

I know that NAMI will help with classroom education and sometiems sends people in to speak to not just the adults but also the students in class with someone with a problem. husband's coworker got someone from the Tourette's group to come in to their child's school and let the school know it was not a punishable offense and it was not in the school's best interest to push the parents because the law was on the parents' side. They also educated the entire school at a special assembly and this was just for the one child with Tourettes.

So be sure to contact them because this is a Tourettes' type issue.
 

buddy

New Member
in my opinion you need to contact that law place now. DOn't wait for suspension, suspension from the lunch room is enough, in my opinion to call it a breach of his civil rights.

I know that NAMI will help with classroom education and sometiems sends people in to speak to not just the adults but also the students in class with someone with a problem. husband's coworker got someone from the Tourette's group to come in to their child's school and let the school know it was not a punishable offense and it was not in the school's best interest to push the parents because the law was on the parents' side. They also educated the entire school at a special assembly and this was just for the one child with Tourettes.

So be sure to contact them because this is a Tourettes' type issue.


Thanks I will, thanks to all of you again ( really starting to sound like a broken record but what have I done without you all for all of these years?)
 

DDD

Well-Known Member
Just curious (as I said before I am no expert) did he ever take Tenex (Guafacine)? The only child I know who had some similar behaviors took Tenex with great success. Yes, lol, I know I shouldn't even ask but I'm curious. DDD
 

buddy

New Member
Just curious (as I said before I am no expert) did he ever take Tenex (Guafacine)? The only child I know who had some similar behaviors took Tenex with great success. Yes, lol, I know I shouldn't even ask but I'm curious. DDD
He takes Clonidine at the highest dose they have ever used even with adults (he is a little dude) and we have discussed that. It is an option but the clonidien is working well. It is a blood pressure medication as is the Tenex so would have to go off it (and it is THE medication that helps the aggression) and then go on the Tenex (i'm told) so I would only do this in summer. No way I will risk his school issues growing! haha. He is going to start Lamictal (so far that is the plan) starting next weekend. Both for the effects it has on mood/behavior and because it helps with his kind of seizures. It is a a place to start. Thanks for the thought though and it is nice to know others with these kinds of issues have had it work since we do consider it an option. Keep 'em coming.....
 

DDD

Well-Known Member
As we intellectuals say, lol, "if it ain't broke don't fix it". Glad that you're getting good results. Hugs DDD
 
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