mommaonamission Posted December 5, 2005 Report Posted December 5, 2005 Hello all. Well, it has been a hard week. The Carnosine had improved tics significantly, as well as overall behavior for at least 2 weeks. My husband and I both agreed, as well as his grandfather (who watches him after school sometimes.) I know it wasn't just wishfull thinking. After an excellent 2 weeks of less ticcing and good behavior, I got a phone call from his teacher last Thursday. They are keeping me informed on all of his behavior at school. She had spoken with the other teachers in his rotation, and they all agreed he had been a little moody the last couple days. I was shocked because he had been great at home. They did mention the tics had been better until that morning. I don't know if they were reading into the moodiness or not, no kids want to go back to school after Thanksgiving break. Anyway, when I picked him up that day, sure enough the tics had increased quite a bit. He had a hard afternoon and his headache was back before bed after having been gone a while. He admitted to me before bed, that his grandma who picked him up for school that day gave him a couple doughnuts! I was very upset about this. We all discussed what was on the "DO NOT Eat" list, and this was on the top. It has definitley set us back. He just called me from 7th period because they were having a silent assignment, quiet time to work I think. Anyway, he was scared. He just called to say that he was having a bad day. I know he wanted me to come rescue him or make it better or something. He was embarressed and I could tell he wanted to cry. For a 12 year old, this is social suicide. I felt so helpless once again. Does anyone have any experince with how to deal with this. When vocal tics are bad, and your child is in a quiet classroom, what do you do? I need to make this easier on him Our first Neuro appt is on Thurs. Maybe that will be helpful. Any suggestions in the mean time would be great, and very appreciated. Thanks.
Chemar Posted December 6, 2005 Report Posted December 6, 2005 dear mom.........welcome to the world of tic triggers It is sooooooooo hard sometimes to play policeman all the time! As far as vocal tics go....most important would be for the teachers and classmates to be clearly informed that this is beyond your child's control. until you have a clearer idea as to just what the underlying issue is causing the tics, it is so necessary for your son to not feel stressed out about this. with understanding and compassion from teachers and fellow students, it can be a whole lot easier to deal with. we learned real early on in our journey with TS to be very proactive and upfront about things and we have really been very pleased at how understanding both adults and other kids are when they know what is happening. I am not sure if you have looked at the thread I have re The Treatments that have helped my son, but here it is again just to give you some things to consider http://www.latitudes.org/forums/index.php?showtopic=687 hopefully grandma will have seen now just what a doughnut can do!! and help you keep him off the junkfood (((hugs))) to you from another mom who sure understands your frustration...but can really encourage you that you much reason to be hopeful that things WILL get better
mommaonamission Posted December 6, 2005 Author Report Posted December 6, 2005 Thanks so much Chemar. You have given good advice in the past. I will definitley check out the link. I have seen you post it before, but that is when things were getting better for us. I have had a meeting with all of his teachers at the same time, so we are all at a pretty good understanding. One day while my son was out of class, they had a talk with the rest of the kids and explained that Kevin has "nervous habits" that he can not control, kind of like hiccups. The kids have been very understanding so far. Before all of this, he was quite the leader, so I think they respect that a little. Luckily, in his middle school they have block schedule. He is pretty much with the same group of kids all day long. We were careful not to label it as Tourettes since some of the kids can misunderstand what that is. I know that he is still embaressed by it. Especially on the bad days. This is our first set back after things were getting better, so it's back to the drawing board. I expected that, so we will hang in there. It is just a little dissapointing. I'm sure you have been there. Hopefully the Christmas band concert tomorrow night will go okay. Tics have been pretty bad. Cross your fingers...thanks again.
brett Posted December 6, 2005 Report Posted December 6, 2005 Hi Momonamission, it is Brett. I totally understand how you feel. It is very difficult when someone who loves your child and truly wants their best interests at heart does something that they feel is okay, but undermines the plan you have worked so hard to establish. Perhaps you could talk to her, but you can couch your words in a manner like this: "Grandma, I know how much you love grandson, and how important he is to you. You are also so important to him and to me as well. I know how worried you are about him. We all are. It is such a hard time for all of us. We need to work together to help him. I need you to help me help get him better. Your help means so much to me. Let's talk together about what works for him and what doesn't. I know you want to give him everything he asks for, what grandparent doesn't? Let's talk about what works for him the best, and we will be on the same page." etc., etc., something like that? That way you are in it together. Maybe she can agree to give him a special little something once every month, but not spoil him. It is hard for grandma's. My mom is suffering terribly as she loves my son so much. Anyway, I am sorry about the setback. Life does have these setbacks, we cannot be there all of the time watching over them although we wish we could and worry constantly! Brett
Jeff Posted December 6, 2005 Report Posted December 6, 2005 Another thing you might do is provide Grandma with some all-natural treats that she can give him, or give her a list of things that she can buy and have on hand. Is there a Whole Foods nearby? The 365 brand of cookies have been good for us... There are probably a lot more things to choose from, but we don't have many opportunities to shop there, since we don't have a store near us....
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