How many times have I shared about my son's Tourette Syndrome, only to be told, "I just don't see it....he seems so 'normal'." Duh! He is normal....he just happens to also have TS!
We are among the fortunate, my son's tics are not as severe as a lot of others. He usually suppresses a lot of it, and then lets it all out at home. There are pros and cons to this.....one PRO - is that his classmates are not always aware that he has TS and never think twice about it. CON - his teachers or other adults may not understand the amount of energy and effort he is putting forth to keep control of his tics and assume his life is just peachy. What they don't see is the tic explosions at home, the rage outbursts, the meltdowns, and frustrations from holding it in all day. Or the havoc that it can play on family life.
Ever had a night when the whole evening crumbled in front of your eyes, because you made the mistake of mentioning one thing for dinner, and ended up having to make something else? Or been in line at DisneyWorld for that favorite ride you promised, only to have them tell you the ride is being shut down....which leads to a major meltdown. Everyone thinks you have a bratty kid, and in the meantime you're trying to save the day for your child and for your family. Disney is a little less magical at that point.
Sometimes I've secretly wished for the tics to explode more in public, just so others will see we're not faking it! Others without TS seem to think that motor or verbal tics are the worst of it all. And granted, they are no joy, and we struggle with those at times too. However, the "unseens" have caused more heartache in our family than the tics. You can't exactly explain to the family in front of you at DisneyWorld that your child has anxiety issues and OCD.....and he really can't control the way he's acting. And why should we owe anyone an explanation to begin with?
So yes, it's more than tics.....way more than just tics.....
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ReplyDeleteGood luck with the blog, B.J. I tried to comment on it, but without success. In a nutshell: The only thing that Tourette's, in and of itself, will make you do is tic, and to highly varying degrees. The "rage," and "explosive" behaviors, high anxiety, etc., are outgrowths of ADHD, OCD, and, well, anxiety, which we don't all have to such great degrees along with the TS. I hope all your posts will emphasize that most people with TS have mild to moderate cases, and that every case is unique. :)
ReplyDeleteTrue in that the rage, explosive behaviors, etc. may not be rooted in TS, but the tics will magnify it or exacerbate it.
ReplyDeleteWhat a great first post! There is so much more to TS than most people can really fathom. I've gotten the same response about my son on many occasions - "He seems so normal" - but there is so much that he seems to only show around his family after he has suppressed it so long that it all just seems to come out as one big explosion. I can't count the number of times that people have asked me "He isn't going to start cussing is he?" because they don't have a real understanding of how unique TS and its coexisting conditions are to each individual. Hopefully through all the TS blogs that are being written, we can help to educate this world and give them a better understanding of what TS is really like.
ReplyDeletehello. new to your blog. i also have a TS blog
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thx for sharing