Am I missing something??-- sorry a vent

[wy_kid_wrangler04]

I am pretty sure my 5 year old (who will be 6 on friday!!) Has tourettes syndrome. I have talked to a few people and they agree after observing him- but I am not going to get him evaluated by a neurologist after all after talking to dh and a few trusted friends. It wouldnt change anything- he would not be on meds- there is nothing it would do other than put an official label on him.

 

So with the acception of 1 good friend and a couple other people- EVERYBODY has been saying things like "Oh I am so sorry- If there is anything I can ever do please feel free to let me know."

 

Or "I can not imagine what you are going through" :001_huh: really?? Did my ds all the sudden lose his ability to walk, talk, eat and be a kid?? :glare:

 

One person had the nerve to say "_______(her dh name) and I would be happy to watch the other 3 kids until you and ____________(my dh name) get used to taking care of ______________ (ds's name) properly" :glare: :001_huh:

 

Really people??? ITS TOURETTES SYNDROME?? Its not a big deal. So he has a few uncontrollable muscle spasms-- is it really this great big tragedy?? When I was pregnant he had MAJOR complications, then when he was born he got stuck in the birth canal and his first Apgar score was 1- he was blue and lifeless... his 2nd was 3-- still-- looking mostly lifeless--and they think THIS is a huge tragedy??? :glare:

 

People annoy me-- now going to start our school day.

[Perry]

They probably aren't really familiar with Tourette's. Sounds to me like people are trying to be kind and helpful.

[ThatCyndiGirl]

It sounded like they were trying to be sympathetic to a situation that you have going on in your life.

 

They care.

 

They probably weren't trying to sound insulting. I didn't take what they said as insulting. Of course, I'm not in your shoes, so who knows how I would take it?

 

Tourette's Syndrome is still an anomoly and is considered a disorder, no? They were sympathizing with the fact that your son seems to have a disorder that MAY complicate his life and yours. I didn't see any ill will in what they said. :grouphug:

[StephanieZ]

I would advise you to reconsider how widely you want to spread the label.

 

You apparently are not stressed out by this and don't need support/encouragement from folks. . .

 

And, as you can see, folks have some negative reactions. Additionally, their reactions annoy you. . .

 

Perhaps you might want to consider just not talking about it. If you do feel the need to explain tics (most people don't notice minor ones, IME), you could mention that "He can't help it. . . He has a tic disorder that will probably go away in time." That'll be truthful and avoid any negative responses and/or expectations.

 

FWIW, when my child was being worked up for tics, it was the most traumatic experience I have had as a parent. I was very fearful and sad. I envy you that your peace of mind about it came so easily; mine was hard-won.

[Guest ME-Mommy]

Reactions like the OP describe are exactly why my friend has decided NOT to make it widely known that her son has Tourette's. :glare:

 

Her son is a fine, upstanding, highly-gifted young man. He is a "natural-born" leader and we suspect he will enter the ministry.

 

The few people she told seem shocked and started treating him differently... :001_huh:

[wy_kid_wrangler04]

The ones I was talking to were (mostly) people I was going to for advice about the neurologist- I had some family advise I go and I wanted to get the advice of some close people that I really trusted about it. There were 2 people that had asked what he was doing (very rude- but we were at a safety fest and I didnt know them and that was before talking to my friends). Maybe that is why I took offense to my friends concern. Maybe I did take their comments wrong-- Dh has a cousin that has a daughter with Tourettes so I guess we are just used to it and dont think much of it. I certainly am not going to be telling people anymore now that I am not planning on going to the neurologist.

[CAMom]

Yeah...most people don't get TS. They associate with the most extreme cases they've heard about with children using expletives as part of their tics.

 

My 17yo (will be 18 in 6 weeks) has TS and has since he was 5 or 6. We haven't been secretive about it but we haven't necessarily shared with everyone either. When people who have known him for a while find out that he has it they can't believe it. Since they expect TS kids to be more severe, they had never seen his tics as TS.

 

As a TS mom, on the other hand, I can usually spot another TS kid after observing for just a few moments.;)

 

At this point, just keep the info to yourself. The folks you talked to were well meaning but just don't understand TS. I do understand the frustration.:grouphug:

[justasque]

Yeah...most people don't get TS. They associate with the most extreme cases they've heard about with children using expletives as part of their tics.

 

I've noticed this too, so I quit using the term. "Tic disorder" , "tic problem", or whatever does nicely. (Of course, then you have to explain tic=twitch, not tick=Lyme...) I especially do not use "Tourettes" with ps teens/tweens - it's just asking for trouble.

 

When people who have known him for a while find out that he has it they can't believe it. Since they expect TS kids to be more severe, they had never seen his tics as TS.

As a TS mom, on the other hand, I can usually spot another TS kid after observing for just a few moments.

 

:iagree: I often think "how on earth did you not notice this!", but people often don't see it. But I see it in others all the time. At the college ds is attending, there seem to be an overabundance of tic-ing kids/adults - it's a somewhat geeky place with a good disability office, so I guess somehow that all fits...

[cin]

Here's my take on this. My daughter has mild Asperger's and we have been going through a lot of therapies, testing etc. And while it could be SO. MUCH. worse, I appreciate the fact that people realize that it can (and sometimes DOES) take alot of time working with her, and going to all the appts. the Neuro Psych who did the testing, we had 3 appts. One appt was ALL. DAY. that was the test day. Then we had the follow up which was 2 hours. Yeah, childcare was needed. Then we have OT once a week, and I am doing all kids of stuff at home to save money on OTHER therapies that would NOT be covered. So, while it could be TONS worse, I am thrilled that my friends recognize that this mild issue still takes TIME and can be exhausting.

 

Maybe some of your friends think you are going to be getting him tested and/or into therapy. In my opinion, be grateful that you have friends so willing to help. jmho

 

"Oh I am so sorry- If there is anything I can ever do please feel free to let me know." If I can take care of your children while you are busy with a Dr./therapy appt.

 

Or "I can not imagine what you are going through" :001_huh: really?? Wow, that means you have extra work/therapy/appts. And it must be tough having your child do & say things at inappropriate times (stereotypical tourettes)

 

One person had the nerve to say "_______(her dh name) and I would be happy to watch the other 3 kids until you and ____________(my dh name) get used to taking care of ______________ (ds's name) properly"

 

I would be happy to watch the children while you go to Dr. or Therapy appts learning how to best work with your DS.

 

Forgot to add, DD's asperger's is very mild, and manifests itself mostly at home. With me <UGH> So my friends were not surprised that there was a problem (as they'd been listening to me whine for years about her behavior), but were surprised that it was aspie. I used this as a lead in to teach them, as needed, about it. Strangers don't know about it. Teachers, I just tell them that she can get frustrated easily, and if so, just ask her to count to 10, or take some deep breaths. But honestly, I have never been upset or heard by the responses you have received. I take them with the love that is intended. And realize that not everybody understands all disorders. So if you say XYZ syndrome, they automaticly think HARD, DIFFICULT, THERAPY, TIME-CONSUMING.

Edited September 27, 2010 by cin