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A VERY bad day indeed...

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  • A VERY bad day indeed...

    I sit here at my computer in tears, not really knowing where to here I am!

    This has been one of our really bad days....and perhaps I just need to vent in a safe place.
    Matthew had an appointment today to have a CT done because he has been having some pretty severe headaches. To make a long story as short as I can, the trip to the hosp is roughly an hour and whether it was anxiety or what, Matthew ranted and raved the whole time! First one thing and then the calling, etc! He was totally out of control and there was nothing I could do or say that made a bit of difference. Finally he started to cry, and usually this is a pretty good indicator that he is feeling out of control and has just about had it! He turned the anger inward and made comments about his wothlessness, etc which I find so hard to hear! You feel such anger and frustration regarding the behaviour you see, and then sadness about how he must be feeling at the time! To add insult to injury after waiting over an hour at the hosp an emergency came in and we never got to the CT.
    We were all tired and hungry so went for a bite...that was a disaster as well....with Matt pointing out rude comments towards our family as well as those around us.Trip home much the same and he is now sitting in his room and I am here, feeling angry, frustrated and so very sad for this little boy that I love so very much!!
    I guess this has just been one of those all too frequent days when I do not know what to do.
    I apologize for the rant, and hope that you might understand that I just needed to be able to say that I feel helpless right now...this to shall pass I know!
    Any advice about what I can say to sooth both of our battered hearts will be taken with gratitude!
    Thanks for the ears...

  • #2
    A VERY bad day indeed...

    Hello MJ,

    I am so sorry to hear about your experiences today. There is never any need to apologize for venting here, as we are here to help each other in our times of need.

    Have you seen Matthew express feelings of worthlessness before or was it his reaction to the stress he was feeling? You may want to discuss his feeling this way in case your doctor wants to determine if Matthew may be experiencing clinical depression.

    Sometimes children and even grown ups with Tourette may become ill with clinical depression because of the isolation they may feel or the cumulative stress they endure.

    Does Matthew have a good understanding of his Tourette at this time, or is he still coming to terms with his diagnosis?

    Were you able to re schedule the CT scan?

    Feel free to use the Forum as your sounding board and we'll try to figure out ways to help you and your family get through this difficult time.

    TouretteLinks Forum


    • #3
      A VERY bad day indeed...

      There is never any need to apologize for venting here, as we are here to help each other in our times of need.
      Truer words were never said. As a parent we think we are supposed to be super human. As a parent of a child with TS we expect we can be super human with unwaivering patience...guess what we are just human. I would love to be able to say I never felt that way when nothing played out the way it was supposed to... but that is not true.

      I applaud you for turning to us for this support. This is the best place to vent. No one can interrupt and no one pre-judges. We have all gotten overwhelmed by our lives as moms especially when having a child with special needs. I have discovered there are three things we never do and probably won't for a few more years to come:
      1.never eat out unless it's in the car and we get drive through
      2.never go to the movies without another adult to watch the rest if one starts to storm
      3.never worry about what others around me think or say when a situation starts, just smile and help your child through.

      When situations similar to this has happened to me, I have found that my reaction is dependent on how much sleep and rest I have had. When I am tired and had to pull myself out of bed that day to get going, then all this chaos starts I can get so frustrated that I often struggle with keeping it together. A word of advice... take care of yourself first... get sleep and rest and protect your personal quiet time. I refer to it as "white space", it's when I take time away from all people and that could mean going for a walk or just hiding in my room for 15-20 minutes to re-group. You need to take the same attitude as if you were on an airplane, when the oxygen masks fall they say put it on yourself before you assist your child.

      remember we are here for you all the time and tomorrow will be a better day.

      TSFC Homepage


      • #4
        A VERY bad day indeed...


        You are not alone and this has happened to us and others so don't feel bad. We went through the same stage before our son better understood and accepted his TS.

        Now we still have this when someone wants to test him. Anxiety, stress, being singled out and not always understanding what someone will do to him all effect the outcome.

        We have learned, taking road trips for test means neither of us work that day. I care for my son while my husband drives. If I have to sit in the back seat I do though I get a bit car sick.. :lol:

        I don't review plans until the morning of.

        It is like planning a vacation to Disney World and the kids know you are leaving the next morning, they don't sleep and then are more then a hand full the next morning.

        My son can only take small portions of plans at a time when they are centered around him and his conditions.

        I always tell him that I love him and am very proud of him.

        I understand how frustrated he gets with all these tests and worries but we really need to do them so we can take care of him because we love him.

        He does not have to feel worried or scared because he is not alone in this and I won't leave him. We will get through it together.

        It is ok to feel mixed up about everything that is happening.

        I am sure it will fall into place and once you have a new schedule for the CT scan in place hopefully you would have had enough time to speak to him about the next trip.
        Let your Doctor know how he managed this last time in advance. He can tell you what to give him to relax him a bit more.