Defiant Behaviors

[jjschwartz]

I have searched this website high and low and do not find anyone who has addressed or discussed the area of my concern. My grandson is living with us this school year, he is in 6th grade. He has TS/ADHD diagnosis and is now exhibiting alot of anxiety and some obsessive thought patterns and behaviors. He has fought the "IEP" ever since it was put into place when he was in 1st grade. I can not comprehend why he would not want the help provided for him. He says he doesn't need the help and can do it on his own and we have tried a few different things and he is not capable at this point. He doesn't like school, but it is probably because he can't perform at the level of a 6th grader. His reading is at about a 3rd to 4th grade level.

 

If it is an issue of being 'embarrassed' I guess I can understand that, but he has never given any indication of that. He just plain thinks he is capable of doing it and does not want help. It makes things so hard because he will get stressed and then out comes the behaviors that I get phone calls about.

 

The school is new this year for him and we are in the process of writing a new IEP. He currently has accomodations and modifications in place. The teachers are not knowledgeable about TS and it has been a real struggle. So, not only am I trying to help the school understand TS and how it affects my grandson, I am also trying to get my grandson to understand that this is all in his best interest.

 

Some of the things that have been happening are: a para told him that she didn't believe his whistling was a tic and after 3 times of asking him to stop he was sent to the office and the superintendant told him the same thing. She also told him that 'choosing not to listen' was not TS. Another one of his teachers, after asking my grandson to stay on task and focus 3 times took the test from my grandson, ripped it up in front of the class and threw it in the garbage. I addressed this with the teacher during a meeting with him and he had no response. He also told me in that same meeting that they (the school, I am assuming) is losing credibility in me because I am using TS as an excuse for all of my GS's behavior. Wow! I am feeling pushed up against a wall, but I know I have to remain calm and work with them because this is all about the child and what is in his best interest.

 

I have been trying to explain to them the deep complexities of TS and the associative disorders and they keep wanting to put him into this nice little special ed 'box'. TS does not allow for rigid guidelines. They need to learn how to 'color outside of the lines' so-to-speak.

 

The special ed teacher is finally bringing in a specialist from some cooperative here in MN and he is going to attend our after testing / pre-IEP meeting and he will also be monitoring GS, talking to his teachers and paras and myself. I ordered the HBO documentary 'I Have Tourettes But It Doesn't Have Me" DVD and asked if I could facilitate a classroom viewing and discussion (grandson said it was time to educate his peers, he did not want to at first - remember this is his first year at this school). I ordered the National TSA themed bracelets to hand out to all the kids. The school will allow me to do this in collaboration with the representative from the cooperative. That is okay though. Then the rep is going to come back into the school and do an in-service for the teachers. So, I have made some progress.

 

I am not sure at this point if I want an advocate to attend with me because I have heard that the school gets pretty jumpy when you start going that route.

 

I am sorry I went on and on, I just needed to vent. But back to my original question: has anyone ever had or heard of a child that turns away with such determination the help that is available to them?

 

Thank you for listening and I sure hope someone out there has some ideas, suggestions or a miracle to pass my way.

To all of you,

Thank you!

[laster99]

I would have to say my son has done the same sort of things, and yes, I feel like it is part of the whole TS picture for us. I think they are dealing with so much emotionally that it is hard for us to grasp at times. But my son would get mad at me when I would offer him help with his work. He would get mad about a lot of things that didn't make sense. We started seeing a homeopathy dr a few months ago and it has changed everything! His temperament is completely different and he is very easy to get along with now. Also, don't underestimate him. I have found (in my experience) that TS children are very intelligent... Maybe not by the school standards. Maybe he can only read at 3rd grade level, but he may be very advanced in another area and feels frustrated that he is being held back by his reading. My son has dysgraphia and would have had a terrible time in a school setting and would have probably been made to feel stupid, but it is not an issue at home as I can write for him of necessary, he could type it on computer or use the voice-to-text program. But he is advanced in other areas. Think about it... We all have our strengths and weaknesses. They are not as accepting of that in school. Just my 2 cents. :-)

 

 

 

 

 

 

 

 

 

 

 

 

I have searched this website high and low and do not find anyone who has addressed or discussed the area of my concern. My grandson is living with us this school year, he is in 6th grade. He has TS/ADHD diagnosis and is now exhibiting alot of anxiety and some obsessive thought patterns and behaviors. He has fought the "IEP" ever since it was put into place when he was in 1st grade. I can not comprehend why he would not want the help provided for him. He says he doesn't need the help and can do it on his own and we have tried a few different things and he is not capable at this point. He doesn't like school, but it is probably because he can't perform at the level of a 6th grader. His reading is at about a 3rd to 4th grade level.

 

If it is an issue of being 'embarrassed' I guess I can understand that, but he has never given any indication of that. He just plain thinks he is capable of doing it and does not want help. It makes things so hard because he will get stressed and then out comes the behaviors that I get phone calls about.

 

The school is new this year for him and we are in the process of writing a new IEP. He currently has accomodations and modifications in place. The teachers are not knowledgeable about TS and it has been a real struggle. So, not only am I trying to help the school understand TS and how it affects my grandson, I am also trying to get my grandson to understand that this is all in his best interest.

 

Some of the things that have been happening are: a para told him that she didn't believe his whistling was a tic and after 3 times of asking him to stop he was sent to the office and the superintendant told him the same thing. She also told him that 'choosing not to listen' was not TS. Another one of his teachers, after asking my grandson to stay on task and focus 3 times took the test from my grandson, ripped it up in front of the class and threw it in the garbage. I addressed this with the teacher during a meeting with him and he had no response. He also told me in that same meeting that they (the school, I am assuming) is losing credibility in me because I am using TS as an excuse for all of my GS's behavior. Wow! I am feeling pushed up against a wall, but I know I have to remain calm and work with them because this is all about the child and what is in his best interest.

 

I have been trying to explain to them the deep complexities of TS and the associative disorders and they keep wanting to put him into this nice little special ed 'box'. TS does not allow for rigid guidelines. They need to learn how to 'color outside of the lines' so-to-speak.

 

The special ed teacher is finally bringing in a specialist from some cooperative here in MN and he is going to attend our after testing / pre-IEP meeting and he will also be monitoring GS, talking to his teachers and paras and myself. I ordered the HBO documentary 'I Have Tourettes But It Doesn't Have Me" DVD and asked if I could facilitate a classroom viewing and discussion (grandson said it was time to educate his peers, he did not want to at first - remember this is his first year at this school). I ordered the National TSA themed bracelets to hand out to all the kids. The school will allow me to do this in collaboration with the representative from the cooperative. That is okay though. Then the rep is going to come back into the school and do an in-service for the teachers. So, I have made some progress.

 

I am not sure at this point if I want an advocate to attend with me because I have heard that the school gets pretty jumpy when you start going that route.

 

I am sorry I went on and on, I just needed to vent. But back to my original question: has anyone ever had or heard of a child that turns away with such determination the help that is available to them?

 

Thank you for listening and I sure hope someone out there has some ideas, suggestions or a miracle to pass my way.

To all of you,

Thank you!

[jjschwartz]

Thank you for your response. We started some cranial sacral massage therapy and reflexology about a month ago. He has had 4 visits, but now we are holding off for a while because we also saw a homeopath and we are waiting for some tests to come back. He picked up on the same areas that the other therapist did. The adrenal glands and the endocrine system which if I understand correctly help with the balance of dopamine and other neurotransmitters in the brain which can be areas of dysfunction in children with TS. I am excited to get on some homeopathic remedies and see what happens.

In the mean time, I think I would like to get my GS into some Cognitive Behavioral Therapy which will definately be a challenge.

My prayer is that we can somehow break through this wall he has up and begin to understand that this help he is being offered is for his best interest. He is willing to try almost anything for help outside of the school.

I suppose also after spending Christmas vacation with his mom, there will be an adjustment period getting back in the routine.

Thanks again.

[jjschwartz]

I have posted a few times in this forum and it seems like there is never a whole lot of feedback which is what I am really looking for. When I look at the stats on the right side of the list of postings you will many times see a huge amount of 'Views' and rarely any 'Replies'. Why is that? People are reaching out for help and we need more interaction. Thanks.

[Chemar]

Hello

remember that the views do not only reflect other members here but also anyone finding these posts on Google and reading them. This includes the search engine "bots" that index the topics. So you cannot attribute the views to a lack of interest or interaction by other posting members.

 

It is also currently holiday time and so many members are away or busy with family etc and so not on the computer as much. ie all forums experience a slow time around the Holidays, which is surely understandable.

 

The vast majority of the threads here have a lot of interaction. But when someone posts a question or comment that perhaps others do not have answers for or experience about, then there really is not much input that can be given. Everyone who posts here does so voluntarily and usually related to what their own experience has been, or based on knowledge they have gathered. But one cannot expect people to provide answers that they do not have. There are no professionals answering here...just patients or parents of patients. As a result, many are often dealing with their own struggles and not always online.

 

hope that explains things a bit and that you will find the answers you seek

[jjschwartz]

Thank you for your response. I guess I have been frustrated in my search for answers and recommendations. I didn't mean to sound disrespectful. Your explanations help me to understand better and learn things I didn't know. I will continue to search and hopefully in my research will be able to help others also.

 

I am working on so many things for my grandson, and I think the frustration lies in the fact that I may only have this school year to provide as much help as possible and the school year is almost half over already.

 

Again, thanks for your support. I will continue to read and research.

[starlygirl]

I've had the same frustration. I just assumed it's because Tourette's must be so rare that there are hardly any people reading these forums. Which then makes me feel even more isolated than I already do in real life. I can't believe there's not a more active forum online to discuss these issues unless there really are only a tiny handful of people in the world dealing with this. I notice the Pandas board is more active, so I read that as well since my son seems to have some kind of unlucky combination of underlying Tourette's as well as Pandas symptoms (tics greatly exacerbated after illnesses). I will try to post more often. Maybe people are just shy about posting in the first place since hardly anyone does.

[Cj60]

Hi,

 

I did read your post but figured I'd wait until parents with direct experience chimed in, since I haven't dealt with defiant behavior or adhd.

Did you search the forum for "defiant behavior"?

I often see PANDAS and PANS comments related to the sort of behavior you are describing. Perhaps posting on that board would bring some helpful responses.

 

I have dealt with tics and minor ocd and have some experience in those areas, but I didn't pick up on any of the things that you have done or are planning on doing to address them directly.

 

I feel badly that your grandson's school teachers and administrators are behaving the way you describe. I wouldn't tolerate it. There are services that schools must provide children with this sort of problem, and they should be pointing you in that direction rather than punishing him and you.

 

Good luck,

 

Chris

[jjschwartz]

Thank you and Thank you again!

Yay! You are out there

 

I spent many hours today researching on the National Tourettes Syndrome Assn. website and many others. Wow there is alot of information out there. I just can't seem to get enough information.

 

I have come across a lot of things.I was learning about the endocrine system and how the adrenal glands that produce norepinephrine which affects the dopamine levels and the brain doesn't utilize the dopamine that is created. Also how information is passed through the brain - a person with TS doesn't have the 'braking system' to stop certain impulses and responses that should be blocked from getting through. And if the information that passed through which in turn causes a tic, if it is a positive response the brain is more likely to allow that to 'slip through' again. All of this is very subconcious but has an effect on how the tics wax and wane and the environments in which they are better or worse.

 

Our experience at the Cranial Sacral Massage Therapy and Reflexologist determined that his endocrine system was very week including the adrenal glands. Then the homeopath diagnosed the same area. We are waiting on some test results and then will put him on some homeopathic medicine which will regulate the dopamine levels in his brain. I think we are going to see some major changes soon. I also will continue to work on diet.

 

As I work with his school and the IEP, I think I have come up with an idea. My GS has never been explained to about TS and how his brain works and what an IEP actually is. I am sharing with him much information and am going to show him the basics of the IEP (not the details) so he has a visual as to what it is. I can't imagine what he thinks it is in his mind. Maybe if he has more of an idea of what it is all about, he will be acceptive of it and not exhibit such defiant and negative behavior towards it.

 

Well, there we go again....I can never say things in just a few words. Thanks for hearing me out!

Jennifer

Edited December 30, 2012 by jjschwartz

[Chemar]

Did you want me to merge this thread with the one you started on the defiant behavior so you have all the responses together?

 

It makes a lot more sense to me now that I realize you had not discussed TS with him nor explained to him why he needed extra help etc! I don't think he was being as defiant as possibly just confused and afraid because he did not understand.

 

Shortly after my son was dx at age 10, I got those helpful booklets from the TSA and explained it to him and then asked if he wanted to let his teachers and schoolfirneds know as well. He did, and so I provided the teachers with the booklets for educators and each child in the class got the one for peers (Explaining TS to young children I believe it was called) My son was allowed to address the class and explain what he knew about TS and the kids asked questions which he or I answered. It went great and helped enormously with things going forward.

We were advised to do a 504Plan rather than the IEP as, although my son had some learning disabilities due to the ADD & CAPD, his overall scores had him more in need of special accommodations for the TS/OCD rather than special ed classes.

 

My best advice to you is educate the educators! and never hesitate to speak out about TS.

 

Just a word of caution about the homeopathy....I have a lot of respect for classical homeopaths....but still, just as with any medication or treatment, be sure you know what they are planning to give and why, and then research it yourself before giving it to him. We gave my son a homeopathic med (agaricus) and it in fact triggered his tics. I have heard the same from some parents (you can do a search here for their threads)...but there are others who saw tremendous benefit! So it really does depend on the individual, and what other issues may be affecting their system. If there is one thing I have learned in our loooong journey with TS it is that, nomatter how well meaning the physician, they don't always know everything and so it is essential to balance advice given, treatments recommended and your own knowledge of the child and the situation...and always check on everything anyone tells you!

 

A very helpful website to learn about the basics of TS is http://www.tourettesyndrome.net/

[jjschwartz]

Yes Chemar that would be nice. I wouldn't know how to do that. (Thread)

 

I appreciate your words of advice/wisdom. The one thing that comforts me about the 'homeopath' (I don't know if that is the correct wording - I just looked at his business card and it says American Naturopathic Medical Association Board Certified Naturopat -)maybe there is a diffence - I am not sure) he has a grandson with TS who is now in college and has treated him, so I feel pretty confident in him. But I do appreciate your input and I agree that there is so many out there and we do have to be careful no matter what type of treatment we seek out for TS and the related disorders.

 

I really believe that my GS is exhibiting such a greater level of the ADHD/OCC symptoms more now than before. I think I read age has something to do with it??? He will be 12 in January. Oh Yay - let's add hormones on top of everything else.

 

All I have read over and over is how we have to educate the school. And I have made quite a lot of progress in that area, but there is still a long way to go. The one thing I am grateful for is GS's Spec Ed teacher contacted a person that works with schools and is experienced in training school staff in TS/ADHD/OCD. He is coming in to our meeting next week when we discuss GS test scores and he is also going to monitor GS in the classroom, visit with his teachers and myself. He will then be coming back and him and I are going to facilitate together the peer training. I have the HBO documentary, I Have Tourettes, But it Doesn't Have Me. We will show that and talk to the classes. And then he will also be coming in to do an in-service with the teachers. So I guess my 'pushing' is getting us somewhere.

 

I also became a member of the National TS Assoc. and am getting alot of info from them for myself and for GS.

 

Thanks again,

Jennifer

[Chemar]

I merged the two threads for you You wouldn't be able to have done it yourself as only moderator/admin has access to that feature.

 

Yes, if the homeopath has a successful track record with TS, that is reassuring.

 

It is a sad but true fact that one has to advocate continuously for any child that needs special accommodations at school! I used to have regular meetings with all the teachers to be sure everyone was on the same page and having doctor's letters really helps too. As you know, TS is now covered for education under the ADA, so it is their legal obligation to provide the accommodations required. I really feel that the more the child understands about it themselves, the better they are equipped to advocate as well. I know some parents try to cover it up and just tell the child it is "habits" or an 'allergy" or something like that...but I think that does the child as well as all others with TS a disservice. The more people know about it, other than the mistaken hyped "cussing disease" stereotype, the better chance of acceptance and understanding.

 

Hope the New Year brings many solutions for you