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How to stop his quirk??

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  • How to stop his quirk??

    My 3 years old son Tommy is on the waiting list at the Montreal Children's Hospital... waiting testing for Aspergers. We was put on the list about 2 months ago and I know it takes about one year... so.... we wait... and wait... and wait...

    The only sign that something is "not quite right" is this repetitive quirk he has when he's bored or over stimulated. He'll get up on his tippy toes, tuck his arm inward and flap his hands like a little bird while tucking his tongue into his bottom pallet. He looks quite rediculous prancing about in his own little world.

    Here's an example of his quirk while he is sitting down:
    http://www.dropshots.com/day.php?use...3&ctime=175530

    Imagine that but running on his toes.

    Anyways... I know something is not quite right. I just don't know what to do about it. It's easy to say "distract him.... take out the playdo or the crayons" but if I'm making supper or washing the floors when he goes off on his little dance, I just tell him to stop it and he says "NO!" and continues to do it. I tell him to stop again and I tap him on the shoulder or tug on his arms to "snap him out of it" so to speak and he gets really "p" and yells "NO!!!" so then I get impatient and give him a time out. He cries for a pew minutes until he agrees to stop... but sure enough.... 30 minutes later.. he's doing it again... he's actually doing it right now as I type and I just want to smack some sense into him (not literally of course!)

    I'm at my wit's end... if only the system in this city was not so terrible... perhaps by now I would know what to do about it.

    Anybody have any suggestions??

    Thanks
    Genevieve

  • #2
    How to stop his quirk??

    Genevieve

    Welcome to the TSFC forum!

    There are a number of members that have TS+ including Aspergers and hopefully they can offer some direction or personal experiences that will help.

    I know with any disorder, telling someone "no" or "stop" does not work. If a behavior is repetitive there is a reason for it and most people can not stop it from happening. Your son is much to young to redirect a behavior.

    Is your physician considering a TS diagnosis too?

    The flapping and tongue references you made can be compared to other posts here discussing TS under the tic parade section.

    If you go to www.wisegeek.com they state they have information about Aspergers in Children, tips and free advice.

    You will also find information on this forum by searching the word (Aspergers) including some links to more information.

    The search feature is in blue above, just click and enter the word, click search all posts for topic.

    Please keep us posted.
    PJK

    Comment


    • #3
      How to stop his quirk??

      Genevieve, this is not some 'little quirk', and he says 'no' because he can't really stop it! He isn't being bad, he NEEDS to do that. It's called a stim, and it is typical autistic behaviour. On the other hand, if it is a tic (which is possible, you can't always manage to distinguish between the two), he also can't stop it. Either way, it is something he needs to do, whether you like it or not.

      I understand that it is annoying. Try to ignore it. Don't make him feel like 'he' is annoying for doing that. I was made to feel like I was no good all my life, that I was a nuisance. What do you think that did to my self-esteem? Right, you may have guessed it - I didn't have any.

      Now it is possible that he'll outgrow it (and probably replace it with something else). But the more you try to force him to stop (and cause him anxiety), the more he has to do it (it likely helps him deal with anxiety).

      And yes, obviously there is a problem. But he, the person your son is, is not a problem. You need to love him as he is, who else will?

      And I agree, a one year waiting list is way too long. But really, not much can be done. Distracting him might work some of the time. But if it has to come out, it will at a later time, no matter what. Actually, making autistic kids suppress stims always backfires. They may SEEM more 'normal' (whatever that means), but suppressing stims causes incredible anxiety which causes different problems down the road. I know. I am autistic myself (Asperger Syndrome).

      And any drugs that might be recommended are quite unhelpful, since none have been tested for long-term effects and have a ton of side effects. None of them actually 'cure' anything. I would never agree to take any of those. They are known to take any creativity out of a kid (or a grown-up for that matter).
      German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

      Comment


      • #4
        How to stop his quirk??

        Genevieve

        I can hear the fustration that you have about waiting for the appointment.

        I know that you only want the very best for your son and timely health information is vital.

        This is the website to the aspergers society of Ontario which should provide information on this disease process also the program and services of which you could avail of.

        http://www.aspergers.ca/

        Also The TSFC has a support group in Montreal that you could call and make contact with them. The information is on the TSFC main information page and click on About us then click on official affiliates.

        He probably can't stop these movements and he certainly is not doing this to spite you. He is doing this because his body is doing this and he can't control it.

        I would call the hospital every day and see if someone has cancelled then I would try and get that appointment.

        Getting to know other people who have the same movements as your son will help in the acceptance process.

        You are moving in the right direction in trying to find out information for your son and finding out the best ways to help him.

        Keep us posted. Steph

        Comment


        • #5
          How to stop his quirk??

          Genevieve,

          As Steph mentioned, please contact the support Chapter of TSFC in Montreal. Click Here for contact information.

          Has Tommy been officially diagnosed with Tourette to date as well as Asperger's?

          In what department is your son on the waiting list at the Childrens' Hospital and what is expected to take place at that time?

          What physicians or specialists have seen Tommy to date and what has been their evaluation?

          With more information about your situation, we may have some thoughts to share with you.

          Glad you found the TSFC Forum where you are among friends.

          Regards,
          Steve
          TouretteLinks Forum

          Comment


          • #6
            How to stop his quirk??

            I can undestand where your fustrations are coming from. It was hard for our family to at first understand our son's TS. In the beginning we would point out that he was having a tic but of course he can't stop. It is hard for someone without TS to really understand that the person has no control over what they are doing. But that is the case and something you just have to accept.

            I try to put myself in his shoes and imagine how awful it must be to have no control over what you are doing. Remember if he could stop he would. I have learned in the most part to ignore his tics and now sometimes I don't even notice them. However, I must admit, there are days (especially when my day has been bad) that his tics do start to 'get on my nerves'. When that happens I just leave the room (without telling him why) and take a break from the tics. Sometimes five minutes is enough just to shift my focus. But I always remember that although I am able to leave the room for a break he can never leave his tics.

            You son is young (ours is 10) so it would be even harder for him to understand what is happening. But as he gets older and in school he will need support and love at home because other kids (and adults) won't be as undestanding. Not necessarily out of cruelty but lack of knowledge.

            I would suggest just removing yourself (if possible) for a moment to take a breather and I think eventually you will learn to accept and ignore the tics. Just remember to put yourself in his place and imagine what it must be like.

            Good Luck.

            Comment


            • #7
              How to stop his quirk??

              Hi There

              I have to second this suggestion:
              I would suggest just removing yourself (if possible) for a moment to take a breather and I think eventually you will learn to accept and ignore the tics. Just remember to put yourself in his place and imagine what it must be like.
              I too have TSplus and I have low tolerance by nature so it is an effort to tolerate all the things that can become irritating especially on bad days. I often have to time myself out, not my kids so that I can handle my life and kids. I love them dearly and I am really knowledgeable about TS and I can totally empathize but still can not some days. It's a normal reaction but I have learned that to take care of the kids I need to take care of myself first, liken it to when on an airplane and the flight attendant tells you to put the oxygen mask on yourself first before you place it on the children or babies you are traveling with.

              If you could find an out once a day life will become manageable. I used to walk or go to the gym for an hour and then stopped making time for myself only to discover that I was struggling to manage my life... I had to go back to taking "me time".
              Janet

              TSFC Homepage

              Comment


              • #8
                How to stop his quirk??

                Genevieve

                Steph is right about calling to ask about cancellations.

                They may not appreciate it but you can call every day to move you son forward on the list.

                Depending on what test is being done, each department usually has a number of slots each day or week they can fill.

                Most radiology departments in Ontario have 25 slots a day for work in's or Emergencies cases.

                I've done my homework before and found other facilities to get tests we needed and pushed the Doctor for a referral there too. IF you stress to the physician that your are having a difficult time he may move a mountain or two for you.

                Hang in there and know you are far from being alone. We have all experienced the feelings you are going through.

                Janet is right about "me time". You need it for yourself and it will help you give back even more to your son. Hopefully your husband could watch him long enough to get away for 30 minutes.
                You can always drive somewhere and sit in your car if the weather is not good. It helps.
                PJK

                Comment


                • #9
                  WOW... you're all very helpful

                  I have been doing research on Stimming and I know now not to try and stop it. It actually bugs me a lot less now when he does it because I no longer take it personally. :?

                  I must vent though about public places. When Tommy stims at the Super Market, he goes into a trance like dance and runs away. He stands about 50 feet away from me and stims. I ask him come back but he just continues stimming. I try to approach him and that's when he takes off! By the time I get to his spot, he's gone and out of site! I hate it when I loose sight of him but he does this to me all the time. If tried everything. With a typical toddler, a time-out is in order, right there on the spot so that's what I do, I give him a time-out and wait for him to stop having his fit. I never care about what other people think... they have no idea what I have to put up with. I always tell him why I put him in time out.

                  I run after him so many times at the store that, sometimes (judge me if you want) I literally give up and continue what I was browsing at. The way I figured... Tommy is so afraid of strangers he would scream at anyone who tried to talk to him. I don't do this all the time... just when I am totally fed up... then, after a few minutes with him out of my sight; I give in and begin the search. I always feel really guilty after and if anything ever happened to him, I would just die... but at that moment... for that split second, the horrible thought actually crosses my mind "someone, please take him" but then, I realize that that someone would probably do horrible things to him so I start crying and I feel ashamed for even thinking such a stupid thing.

                  But what is one to do? I treat him like any other toddler? I give him time-outs when he runs away because this is a matter of security.

                  What do you recommend?

                  Comment


                  • #10
                    How to stop his quirk??

                    Sorry to hear you are having such a hard time. First, please stop beating yourself up over having "thoughts", I think every caring Mom has had those slit second thoughts if they are really honest with themselves.

                    When my old son was about two (he doesn't have autism) he used to take off on me no matter where or when we went shopping. Twice when I finally managed to catch him ( just how can a two year old run that fast any how? :D ), he screamed at the top of his lungs "I hate you, you're not my Mother, let go of me". Well you can imagine, my face was red, I was sure security was going to rush over, the police were going to be called etc. I was terrified the authorities would take him away etc etc. Well that was it for me. For years I did my grocery shopping and other errands in the evening when my husband could stay home with him. That also gave me some alone time after being home all day with him. If I did have to go out with him I usually did it with someone else there to help, grandmothers, aunts, friends. If you don't have the support of family what about contacting a respite organization or community services to see what is available in your area or ask your family doctor what is available to help you?

                    Talking to friends helps, if there isn't a support group in your area could you start one? I'm sure there are other Moms out there who have children with unique needs and would like someone to talk with who understands.

                    Please keep in touch here, most of us can relate to what you are going through and no on will judge you as being "bad".
                    Take care

                    Comment


                    • #11
                      How to stop his quirk??

                      Genevieve

                      NME is right. Please don't beat yourself up over this.

                      What you are experiencing seems isolated to you because it is happening to you but it can happen to any mother. I understand the "I'm worn out" feeling first hand and can remember how my son behaved when he was out in public.

                      Everyone seemed to know us but for the wrong reasons..there for a while.. :oops:

                      I made lists short and put my son in the buggy. I had him pull items on the list off like cereal that he could reach.

                      The buggy never had more in it then I could manage this way to keep him close. Oh..the bread always went up with my purse.
                      I also spoke to the management and they agreed to charge me a small fee if I needed to pull a banana or apple off the shelf to have him eat. I would bring the peal or core up to check out to show I was not stealing.

                      This calmed my son down and kept him actively involved with the shopping. He did not notice people around him as much and if he did they did not scare him since he was with me.

                      Before that, I went through the same experiences you have but worse, my eldest daughter would be chasing him through the store to round him up.
                      Also, If he did not behave and work with me or tried to climb out of the buggy, I would push the buggy to the front of the store and apologize before taking him home without my shopping being done.
                      Oddly enough he never liked that and it only took two times for him to get the message to stay put... :D

                      Hope my experiences help you.

                      Take care,
                      PJK

                      Comment


                      • #12
                        How to stop his quirk??

                        Genevieve,

                        It is great that you are reading up on the disease.

                        Don't be upset over how you feel. Those moments happen to all of us.

                        Like PJK said, I would use a stroller and everytime you go to the store then I would definately make him stay in it. There are lots of yummy crackers and milk that kids love that you could give him.

                        My boy when he was young would act up when we went to the mall. I remember one time I didn't let him have candy in those machines well he screamed at the top of his lungs "Mommy stop hitting me" I was so embarrsed that I will never forget that moment.

                        Keep us posted. Steph

                        Comment


                        • #13
                          How to stop his quirk??

                          Genevieve, the buggy idea is a good one. If the buggies in your supermarket don't have a seat belt for kids (ours do), buy one of those harnesses you can get to be used in strollers or highchairs, and use that. Make sure the straps are short enough for him not to be able to stand up and throw himself over the edge purposely in a fit of anger, making the buggy fall over (kids WILL do things like that, I have five and know).

                          Also, giving him something to eat is a good idea. Some supermarkets give children under ten a free cookie, or what PJK suggested with the apple or banana sounds like a great idea, too.

                          But if you are able to go without him in the evening, that might be a nice break. Personally, that's my favourite, if it is possible. But then, I have an unusually intense need for alone time and privacy due to AS, and can't function without it.
                          German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

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