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Thread: Feeling lost...

  1. #1

    Default Feeling lost...

    I finally caved and decided to go on the internet and see what I could find on Tourettes. My 7 eyar onld son was diagnosed several months ago with TS. My son also has a receptive speech dleay (learning disability) that was diagnosed when he was three. He is delayed in school due to his learning disability and struggles with his verbal language. He was diagnosed with TS becasue he recently had very strong facail sitortions with eye movement that both my husband and I thought might be seizures. When probed by the neurologist, we realized that he has many other tics that we had chosen to not notice. (verbal throught clearing, sniffing, hgand rubbing nose in upward fashion) We are not sure how long these have been going on but we can guess that it has been happening for at least a couple of years. My son also has "meltdowns"and has since he was two. Often he needs to be restrained do he doesn't hurt himself or others. Although for awhile these seemed to be getting better, he seems to be getting into more trouble for aggression at school over the last month. When he started the school, I advised that supports should be in place because he is impulsive and a "flight risk". The school has not followed my advice and my son was almost suspended on friday from sptting on a little girl. I was still taking him to doctors to find out if there was something else that could be casuing these behaviours. I didn't realize that they are sometime associated with TS. Now I am not sure whre to go or what to do. I feel that he is going to continue to lose his temper and needs someone to intervene prior to him getting worked up. Are there any successful behaviour modification techniques that someone has used for children that have anger issues? Becasue of his learning disability he is all ready teased by many of the children Now he is being aggressive so the children are going to like him even less. As a mother, this breaks my heart. He says that he just wants kids to like him and that he sometimes can't stop the bad voice. Any advice would be greatly appreciated. I am struggling with getting the school to understand where I am coming from.

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,843

    Default Feeling lost...

    Welcome to the TSFC Forum! We can understand your concerns but for the benefit of your son who are looking to you for strength and re assurance, you must find a local support group which can guide you to local resources.

    If you are in Canada, there are several Chapters across the Country that can help. If you tell us where you are located, perhaps we can point you in the right direction.

    Does the neurologist your son is seeing have a professional interest in TS?

    If so, perhaps the Neurologist's office might be a good start for a a referral.

    Have you looked into a Childrens' Hospital in your area?

    May I suggest that at this time, your son is looking to you as his ultimate support to re assure him he is not a "freak" and he needs to develop a rehearsed explanation to aleert or inform strangers that he has a neurological disorder called Tourette and to ask that they excuse some of his unusual behaviour.

    Please provide us with more detai l as to your whereabouts in general terms so we can try to locate some resources.

  3. #3

    Default Feeling lost...

    Thank you for your encouraging words and advice. I recently moved to Nova Scotia. I do not beleive that there are any support groups in our area but I will ask the doctor.

    The neurologist that we saw, basically gave the diagnosis and informed us that he did not beleive that medication was necessary. My husband and I have worked with special needs children for many years and the neurologist indicated that he felt that we should continue with the behavior modifications that we have been using. At home, we can take the time to intervene with Eric prior to him getting to the aggressive point. We have cut down his meltdowns to only once to twice per week and that is a huge improvement. unforunately, without constant supervision at school, he is not able to always get himself under control. The neurologist that we saw is from the IWK in Halifax but I feel that his matter of fact diagnosis isn't enough. We now need some supports. We have hired a private psychologist and I am going to ask her about support groups in our area.

    I have to admit that I have been avoiding looking on the internet for info about TS. I felt that I could not rely on correct info. When i did fiund this sight and read some of the parents entries, I was amazed that there is a large group of parents that have children like mine.

    Part of our concern is that because Eric has a learning difficulty he presents as a much younger child. It is very difficult to expolain to him that he has TS. He aften gets frustrated with his own behaviours and just keeps telling me that he is stupid.

    Once again thank youfor your post.

    K

  4. #4
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,843

    Default Feeling lost...

    Have a look at the TSFC page of Local Affiliates.

    Though there appears to be no active Chapter in Nova Acotia, there are some local contacts listed on that page.

    I was faced with a similar situation several years ago, and helped form a local Chapter in my City. You may consider getting a few people with interest in TS in your part of NS to at least get together to share information.

    Your current challenge is to help Eric maintain his self esteem while he is dealing with the reactions of strangers. For that reason, Eric needs to rehearse with you the response he will provide to those who may ridicule him or look at him windering why he is behaving in his own way.

    He should be able to say, in a matter of fact way something like: "It's called Tourette Syndrome, and I can't help what I am doing because it is a disorder I was born with. Sorry if I have disturbed you, but if you'd like to ask me more about it, I'll answer your questions"

    Others may have variations of this explanation their children use, so their comments would be welcome.

    Learning disabilities are part of the TS package in many instances, and it would be worthwhile to do some selective research on the subject.

    What TS sites have you already examined?

  5. #5

    Default Feeling lost...

    Thanks again Seve. I will contact the local representative today. After finding this sight on monday, I stopped. I had to let a lot of the information that I found be processed. Honestly, it opened my eyes wide. I would welcome any suggestions for other sites. I just ordered the handbooks for educators off this site and I am hoping that this will provide information on how to help the school work with Eric. In the mean time, I am going to talk with his psychologist again and perhaps talk to our gp about another referral to a neurologist specializing in TS. Thanks again.

    Karen

  6. #6
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,843

    Default Feeling lost...

    Karen,

    In addition to the resources available on the TSFC site, one of the more professional sites that can offer a wide range of inforamtion is Web MD

    Please keep us posted on Eric's progress and your success in getting additional medical opinions.

    Your information about your experience in Nova Scotia will be valuable for other members in the Maritimes.

    Hope you will make our TS Community a regular stop in your online activities.

  7. #7
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default We've lived through it too.

    Keek:
    Schools need to be educated too. My son has had explosive episodes in class and at times has used the office as a cool down spot. They blame the ODD more then the TS but I see the frustration in his eyes not being able to control himself or the tics.
    The meltdown's as you refer to them have happened at home too. I usually he says he is STUPID. He can try to hurt himself or others to lash out and vent. His social skills are not developed very well for his age.
    His father issolated him from others when living with him as a control point.
    I would recommend introducing this website to your school and his teacher. Get them to spend some time reading and better understanding what works. Often they try to reward or punish. This does not always work with children like ours. The younger they are makes it harder for them to understand why they are being singled out.

    I can only offer compared life stories and hopes that you can find someone locally that will help you and understand the condition.

    TS is complex to those not living with it. Scary at times to those that do.

    You will see improvement as everyone works together and this you will have to fight for in most school systems.

    I wish you the best in your quest and just remember you are not alone.
    PJK

  8. #8

    Default To medicate or not...

    I am completely at a loss. I have a seven year old son, going into grade 2 next year. He has only recently been diagnosed with TS and he also has a expressive/ receptive speech delay. He has struggled since he was 18 months old with impulse control. He is a great little boy and has a way of making adults fall for his dapper way. This year, I met with his grade 1 teacher, the learning resource teacher, the principle and his grade 2 teaacher to discuss the plans for next year. My intentions were to insist that he be given some TA time to assist with providing him with tools to help with the impulse issues. I was told that not only did he not qualify for a TA but that he would be losing his resource time because he is now reading at grade level. Don't get me wrong, I think that it is wonderful that he has made such huge progress academically this year but I have seen a huge decrease in his self esteem and the school doesn't seem aware that this has come at a huge cost to his emotional stability. The other kids know that he is different and he know that he is different. He so wants to stop hurting people when he gets angry that he asked me the other day if I could "just fix him". So, my husband and I have been considering medication to perhaps help him through the school year. He also has ADHD symptoms that make it difficult for him to sit for lengths of time. He also has complex tics that force him to pace and babbble. Can anyone suggest whether we should medicate for the tics or for the ADHD or what. I am new to my area and have not built up a trust for my son's doctor and I am really nervous about medication. I just keep thinking that it shouldn't have to be this difficult for my son and I want to do whatever I can to make it easier. Any suggestions would be greatly appreciated.

  9. #9
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,843

    Default Feeling lost...

    Keek,

    The unfortunate truth is children and adults with TS are frequently misunderstood due to a lack of awareness of the manifestations of the disorder.

    At this time Nova Scotia is under-serviced; however I believe you have the name and phone number of the Contact Representative in Halifax which can be obtained from the National office (800) 361- 3120

    The TSFC is powered by volunteers who provide support services and create liaisons between local Chapters and the medical community.

    A few dedicated volunteers is all that is needed to create a local support system...when you are ready perhaps you might care to become involved.

    There are Forum members with experience in establishing a local support Chapter if you wish to pursue the subject.

    In the meantime the TSFC offers an EDUCATORS' RESOURCE KIT and
    CIRCLE OF SUPPORT Video which a parent can use as a substitute for a live in service presenter to acquaint educators on TS.

    This kit contains ? Circle of Support: A Practical Guide to Tourette Syndrome for Educators VHS or DVD, an Interactive Workbook, a Facilitators Guide, Symptom Checklists, and a copy of Understanding Tourette Syndrome: A Handbook for Educators, 2nd Edition!

    CLICK HERE for ordering information.

  10. #10
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default Feeling lost...

    Hi Keek

    Welcome back to our BB.

    I have a seven year old son, going into grade 2 next year. He has only recently been diagnosed with TS.
    I too have a 7yr old going into grade 2 in September who was recently diagnosed with TS. He had a struggle at the beginning of the year with so many things. At the start of the year he was a flight risk and he would melt down everyday...what a horrible feeling it is to have your baby upset everyday just by going to school. I feel your pain and frustration. The school was good with putting a plan in place with me and him to ensure he understood that as he started to get upset that he go to his "safe place" which was a part of the classroom teacher's room that we clearly set up and identified for him as his place.

    he would be losing his resource time because he is now reading at grade level
    This past year I am assuming that you had some type of individual student support plan in place for the school to have provided resource support. In September if you go into the school prior to the first day and introduce yourself to the teacher you can have that one-on-one time with her to educate her on your son's needs. You could also ask for a meeting to be scheduled to discuss the supports that need to be in place for him as soon as possible to make the transition easier. Resource tine can be used for other learnings...one of the things I set up for my son this year was that the "special education" teacher on staff took Patrick out 4 times a week to spend time going through social stories with him to help him learn how to cope in specific situations. This is a strategy that is often used for autistic children. This could be a need for your son and the goal that needs to be documented on his education/support plan is that he needs to learn how to identify his basic feelings like sad, mad, excited, etc. This will help with his ability to communicate what is upseting him. What I have found and from what you would hear from Ross Green the author of the book "The Explosive Child" is that kids especially at this age do not have the language to express how they feel... my oldest son (13) could only label his feelings of frustration a year ago... when you can't find the language to describe how you are feeling then the pressure and stress builds and the end result for many is the "melt down".

    I just keep thinking that it shouldn't have to be this difficult for my son and I want to do whatever I can to make it easier
    Truer words were never said. I have 4 boys and 2 are diagnosed, my younger 2 are a twin and start the process for "potential" diagnosis next week (they will be 5 in August). Living with TS and having 2 for sure with TS gives me huge insight to what my two little ones are displaying. There are days that it is easier and the there are days that I ask myself the same question. The best thing I ever did for myself and my kids was get educated. I have read and talked to so many people with TS, or have work with people with TS or live with someone with TS. This only happened for me when I got actively involved with the TSFC. Luckily I live in NF and there is a chapter here. Use the contacts Steve shared with you. Get out and talk to people face to face and continue to stay connected with the people online here...we are real and will not intentionally mislead you.

    Can anyone suggest whether we should medicate for the tics or for the ADHD or what
    Keek, I share this carefully with you because I do not want to come across as advocating for medication because I do not tell anyone that they should or should not. I will share my personal experience and the reasons we took the route we did. Again as stated throughout our entire BB medication has to be a decision you need to make based on your personal choice, beliefs, etc. As an organization regardless of what level you connect with ie national, local chapters or local representative, none of us will advocate for or against, our goal is to ensure you have all the possible resources to help you make the best decisions and to get the help and support you need.

    As a family we did have to make that same decision. For both my sons, it came down to their quality of life and it also came down to our quality of life as a family. To help with the decision process ie what to medicate for, we evaluated what was negatively impacting their lives. For Ryan it was impulse control and his ADHD so we targeted his ADHD first and then once established his obsessive behaviors were interferring with school so we then targeted that...he has had tremendous success with his medications(Concerta -which is a form of ritalin that has a slow release of 12 hours and Risperdal) and has a "good" life according to him and he is now self-advocating. For Patrick his obsessive behaviors and his meltdowns were what we targeted with meds (liquid Risperdal because of his refusal to swallow tablets)and we have not bothered to target his ADHD because it is not interferring with his life like it did for Ryan. All children are different. Explore your options, research and ask endless questions. One thing that I do not do is chase their tics with medication. Even with meds they tic and the tics do wax and wane but we don't increase dosage or switch meds due to increased tic frequency or compexity. So I guess what I am saying is that it wasn't the tics we were trying to medicate but the other symptoms of TS that were impacting their lives.

    Working through this will have it's ups and downs and rember that noone knows a child as well as their Mother. You will do what is best, so trust yourself. Please continue to ask your questions and vent if you need to here on this forum. There are many great people who post and will share their ideas and resources.
    Janet, mom of 4

    TSFC Homepage


    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

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