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  • hello

    Hi Everyone,
    I have 2 boys with tourette, as have I. I've been popping around this website for years but haven't noticed this forum before...lol
    I'm so happy to have a place that understands what it's like!:Big Grin:
    My boys are 13 and 7 with, what is considered mild tourette, as far as the ticing goes. Behaviourally, my eldest is great and most of anxieties and issues are suttle. My youngest, however, is a challenge. He has frequent melt downs, and others don't get the discipline. I'm not screaming at him, or doing 123 magic, or time outs. They don't understand that talking to him after the fact and dealing with issues calmly instead of flipping out works better for him. He was grounded from the pool the other day for screaming at a family member's house when it was going home time. The in laws thought it was weird that I waited until he was finished screaming (about 20 minutes...lol) before speaking to him. Explaining to him why and taking the time to help him understand why before discussing a punishment. It was actually his idea to be grounded from the pool for a day...lol
    Anyway, I read an article in the paper about tourette and found out this behaviour can be tourette related. All these years and I had no idea! I was so happy to read up on it on this site and check out some new ideas for dealing with it.
    Both boys are very giving and compassionate and love to hang out with friends and be outgoing. Melt downs are rare and usually due to over sensitivity issues.
    Looking forward to reading up on all the posts and hearing from people!
    Jen:Big Grin:

  • #2
    Re: hello

    Hi Jen,

    Welcome to the Forum. Do you mean you were visiting the TSFC home page by were not aware of the Forum?

    Glad you found us and we'll be looking forward to your participation


    Steve
    TouretteLinks Forum

    Comment


    • #3
      Re: hello

      Welcome Jen!

      It will be nice to hear views and strategies from a seasoned mom such as yourself!

      I agree that most people who do not have experience with special needs children do not understand at all the methods we use with our children.

      A couple of summers ago as I was waiting to pick up my child from day camp I noticed a father also waiting with a younger child who was obviously having some difficulty and very upset about something. As I watched another Mother went up to the boy to tell him not to worry that the craft item he had accidently broken of her daughter's had been replaced by the people running the camp.

      The boy was so distraught (obviously more than he should have been) that he was unable to respond to her. It was clear (to me anyway) that the boy did have some type of issue going on besides the broken item. This mother pressed him further to answer her. The boy then yelled quite loudly that she needed to leave him alone and his crying became even worse. This child could not have been more than 6 or 7. The father immediately apologized to the woman and stated that his son was special needs. She became quite angry and said well I am special too and walked off. The father was mortified and the young boy became even more upset.

      I felt so bad for the father that I waited until the boy stopped crying and then went up to the father to say that I understood what he was going through and he was doing a great job dealing with his son in that moment.

      I think all of us need to hear that sometimes. You did the right thing by waiting until the storm had passed with your child. It is pointless to try talking to them when they are in that state. It is hard for some people to understand that just because we are not dealing with it in that specific moment it does not mean that we are allowing them to get away with it.

      Comment


      • #4
        Re: hello

        Hello Super Moderator! You sound like a superhero...hehe
        and Hello to Administrator (spelling? lol)
        First I'll answer Steve's question, I didn't notice the forum before. If I did and have been here, I don't remember LOL (I have tourette also..;))
        I've been to the tourette site and I have your link on my yahoo group, special needs in home education of Canada.
        http://groups.yahoo.com/group/snheoc/
        It's so weird that I didn't notice the forum. I have some support at the yahoo group but its all different needs. Here it's specific and I haven't visited for awhile. I learned some new stuff! I had no idea about the teenage part because I hadn't read up on it until recently. I wasn't 'there' yet...lol
        One day at a time, right?
        Thank you for the story! I so needed to hear that! I can't believe the lady said she's special too......
        We all are! hehe
        My youngest is the real challenge...I guess I should explain all the special needs stats. We know very few people just have tourette.
        So, here are our stats:
        13 yr old-tourette, general anxiety disorder, triple jointed in his hands (you think a child learning to write with the tourette is hard...lol) and Central Auditory Processing Disorder. He's doing grade 8 through correspondance (ILC) in sept and shows no signs of the CAPD anymore, I think the french program helped. It's hard to explain but I'll try. You see, if you turn your back to a child with CAPD and make sounds of a word, don't spell out the word, just sound the word with spaces between the sounds, they shouldn't be able to do it at first. k-a-t, he should have a hard time figuring it out, that its cat. The hardest one is acopet cuz its not a word, you build up to it over months and start with a-t all the way to a-co-pe-t
        So, he had a therpist do it to him and he aced it. In 15 minutes he had gone from beginning to end of the list of words. He was getting words like hippopatamus (spelling?) Anyway, the french program is done on the computer and he has to desifer the sounds of strange words when learning a new language without seeing the person and being able to see their mouth move. Over the years, it seems, the program has helped that part of the brain develop. Who knew? He was told he would never learn to read and he reads at a grade 10 level and writes at a grade 7 level. He types almost everything. He's a bright kid and really sweet and compassionate and giving. It's strange for a 13 yr old, so I'm told.

        7 yr old-tourette, general anxiety disorder, the CAPD, and gifted.
        This one is less of a story. He's doing grade 4 math and science. He's doing grade 1 language cuz of his CAPD, still doing the speech therapy thing with him. His behaviours are much more extensive and he sleeps, like, never. We are very consistent. He's been going to bed at 9 with the same routine forever. He goes calmly and no problem. He just lays there though. He just lays there and flips through books or hums or whatever until about 11 and then he's up at 7. I'm told it's part of his giftedness but I wonder cuz he also talks and walks in his sleep. Is this a tourete, anxiety, or gifted?? All 3 say, sleeping difficulties can arise. So, who knows?
        Me-tourette, the anxiety thing
        Hubby-gifted, severe carpal tunnel syndrome, and my personal opinion ADD...LOL
        We are presently on WSIB (worker's comp) and hubby's being re-educated through them at mohawk college to be a transportation engineer (see, he's gifted just to do the math...I wouldn't have the first clue...lol)
        The CAPD is possibly with me, as I had the same speech and language delay as a child, just never been tested. It's $100 or more to get that test done now!

        So, we are a 'special' family...lol

        I'm speaking at a leadership conference about home educating special needs children. I'm scared to death...;)
        So, we will see how it goes. I'm also worried because it will be the first time we leave the boys with a 'sitter and not family for 3 days. We've only been away for a whole weekend, once. They were very young at the time. Don't get me wrong, They've left for sleepovers, activities, clubs, and in groups hundreds of times. It's just that we will be 8 hours away and not able to come home if we need too....oh the fear...lol
        It's not 'til sept, so I should be fine with it by then....
        Anyway, that's our story. Thanks again for sharing that story, it so helps to know someone 'gets it'
        Sometimes I want to make t-shirts that say "I'm different, don't bug me, it's not wrong, just different."
        Ok, I had no idea I was writing a book...I'll let ya go rest your eyes now. Thanks for 'listening'
        Jen
        http://specialneedsinhomeeducation.blogspot.com/

        Comment


        • #5
          Re: hello

          Welcome Jen!!!

          I hear you completely. I find in my situation that FAMILY are the ones that say they understand but they really don't. My in-laws were quick to say that it was my parenting style that was cauing my son to behave this way. I was really hurt by this as this was the same time we just found out about Chase's diagnosis. I sent them a pamphlet about TS hoping this might shed some light on the issue. I am not sure how that went because they live 2 provinces away and they only call when my husband is on days off now.

          Anyways I am so thankful I hooked up with this forum because I NOW realize that my in-laws are WRONG and it wasn't what I was doing or did that made Chase this way. I am also thinking that maybe this was the way they took the bad news. I just don't know.

          My point is isn't it amazing how totally clueless this world can be at times? It's frustrating!!!
          CRYSTAL

          Comment


          • #6
            Re: hello

            I am so jealous! I would LOVE it if my inlaws were that far away and only called when hubby might be home!
            They are 5 minutes away and have a get togethers constantly for every occassion. I'm surprised they don't get together for presidents day and we're canadian...lol
            They think I'm messed up too. I tolerate it for hubby and after 15 years, they finally realized that I'm not going anywhere...lol
            The boys take it really well considering. They don't get overly angry or upset when things are promised to them and the promises don't happen. They don't scream when the inlaws tease them. They stick up for themselves when the homeschool issue surfaces again and again. They think my boys had a speech delay cuz they weren't in school...rofl
            My eldest was in school! and when I pulled them out they said they make him angry cuz he talks clearer when he's mad. Does that make any sense? lol
            I was in school, so was my brother! We had the same delays...oh brother;)
            It's so frustrating when people don't take the time to find out. I gave them literature on homeschool and their needs on different occassions. They don't question us much anymore. I think it's because when we gave them the literature they realized they couldn't change our minds. They're right of course but we're too stubborn to realize it...;) LOL
            Oh well, it's so nice to know there are people out there in the real world who get it. I'm on other forums for the boys other needs and everyone's been wonderful and helpful.

            My eldest calls his tics habits though. Anything that could explain tourette to a 13 year old would be helpful! I tried and tried but he doesn't seem to get it. For example; He thinks when he licks his fingers compulsively that its a bad habit and he gets mad at himself. I tried explaining to him that having tics is like having the hiccups. He still doesn't get what he has. Any ideas?
            Jen

            Comment


            • #7
              Re: hello

              Jen:

              WHere are you located? If there is a TSFC chapter in your area you may want to consider taking your children to some social events. It is very helpful for them to meet others who have TS as well and may help him to understand his own "habits" better.

              Comment


              • #8
                Re: hello

                I heard there's a conference coming to niagara falls. Is that true? When and where and who?
                Jen

                Comment


                • #9
                  Re: hello

                  Here is a link to the TSFC conference information.

                  http://www.tourette.ca/events_conference.php

                  Comment


                  • #10
                    Re: hello

                    I can't afford that. :sad:
                    I heard about it and I so wanted to go. We are moving sometime this summer cuz our house is being expropriated and we are buying for the first time. Every penny is going to that.
                    You mentioned that you have representitives that a person can contact. How does that work?
                    We can go anywhere in the niagara region. We're in fonthill....for now....who knows when the region will come and let us know they bought the house....
                    Jen

                    Comment


                    • #11
                      Re: hello

                      Here is a link to the contact information for the TSFC National office as well as all of the chapters. I am not sure which chapter would be closest to you.

                      http://www.tourette.ca/contact.php

                      Comment


                      • #12
                        Re: hello

                        Hamilton is the closest. Thanks for the info, I will look into it at a later date when we have time to make an appointment. I'm hoping sometime this summer!
                        Thanks for your help with all this stuff...
                        Jen:Big Grin:

                        Comment


                        • #13
                          Re: hello

                          Jen... we moved away from them..LOL. We lived in the same LITTLE town as them until almost 2 years ago. I feel like I can finally breathe and they're not judging me on a daily basis. As you do, I tolerate it for my hubby's sake. We have been married for almost 10 years now and have been together since I was 14. I don't want to come inbetween my hubby and his parents. It is easier to deal with NOW that they're not here.
                          CRYSTAL

                          Comment


                          • #14
                            Re: hello

                            Well, I found the checklist for tourette, OCD, and ADHD.
                            My eldest finally understands what tourette is!
                            My youngest though, well, I have a question!
                            I did all the checklists for both children and my youngest son faired strange on the ADHD one.
                            He doesn't have any of the inattention checks, but he has every single Hyperactivity and Impulsivity one. He also matches the Gifted site's list like a biography. I was wondering if they could overlap? Or is he just hyper and impulsive without the adhd? Or could that still constitute as ADHD? Or should I just have him checked out?
                            What do you think?
                            Jen

                            Comment


                            • #15
                              Re: hello

                              Can you post the site for the checklist? Even tho we have the diagnosis I wouldn't mind checking it out. It would be kinda nice to do that for my youngest child.
                              CRYSTAL

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