tourette syndrome

[fleetfootedfox]

Hi. I have an interesting new challenge with my den. One of the boys has for some time been exhibiting early symptoms of tourette syndrome. He makes funny noises at inappropriate times and has some odd motor ticks as well. Recently, he has begun to curse a lot. The last den meeting it seemed he was constantly doing it and I found it very disruptive and sort of disturbing. Fortunately, all the boys in the den know him from school and are somewhat aware of his problem. So, I just did my best to ignore it and move on. However, I'm wonder what kind of problems it might cause in the future. I wonder if some other parents might not want their boys to be around him if they knew he was cursing constantly like that.

 

Anybody want to to share their experiences with this disorder? Anybody else having to deal with this as a scout leader?

 

Thanks!

[Kahuna]

We had one years ago. He made odd noises and had the motor ticks, but luckily he didn't curse or shout or anything like that. I've read some stuff on Tourettes, but most of it seems to be about just ignoring most of the behavior and working with the kid on the cursing and shouting. A lot of them seem to get to the point where it's almost not noticeable. One of the guys I know has it and I doubt that most people are even aware of it. Maybe Google?

[Eagletrek]

It sounds like the boys in your den seem to be aware of this young lad's challenge and are accepting of it. Sounds like you may be doing something right in the area of character development. What a great opportunity to address "diversity." Continue to foster your boy's acceptance of this scout and maybe they'll set the example for their parents to follow.(This message has been edited by Eagletrek)

[kenk]

As the father of a Scout with 'issues' and a 5-year den leader, 2-year cubmaster, and 3-year asst Scoutmaster ...

 

1. Thank goodness the Scout's parents were wise enough to involve their son in Scouting.

 

2. This gives the other Scouts an opportunity to learn about people who are not exacly like themselves, but everyone deserves respect and understanding. It is a VERY important life lesson.

 

3. The Scouts will learn that even swear-words are just words.

 

4. The Scouts will learn whether their parent(s) or the other Scouts' parent(s) are mature enough to do what's right.

 

5. The adult leader's task is explain/teach #2 and #3 to the Scouts.

 

6. Hopefully the Scouts themselves can teach their parents what is right (treating the special Scout with respect and understanding).

 

 

[Chug]

I would explain to any new parents that this lad isn't doing this deliberately, that he has tourettes and needs understanding (Good grief, I sound like a right liberal) I can empathise, my son is autistic and his behaviour can sometimes be a problem.

[skeptic]

We had a scout for about 3 years with it, and he struggled a lot with some of its effects. But he was on a lot of meds that kept it somewhat under control. His tics were usually relatively minor, and the outbursts fairly rare. But, on longer outings, especially summer camp, over tiredness and not getting meds on time made it harder for us all.

 

Early on though, with the permission of the parents (actually his father participated)we sat the boys down and simply discussed it with them. That made a huge difference, and he was generally accepted. He finally dropped out as advanced puberty made his meds harder to keep balanced and it became too hard for him and everyone.

 

Not sure if he might not have been an extreme case. The main thing was that the troop members generally understood and dealt with it, sometimes better than adults.

[Trevorum]

Chug says, "(Good grief, I sound like a right liberal)

 

Not that there's anything wrong with that ...

[click23]

You might want to check with the DE or SE to see if the council has a Scouts With Disabilities and Special Needs person.

 

and check this out http://www.tac-bsa.org/special_needs_awareness_night_planning.pdf

[ChiefThundercloud]

I was ASM in a troop years ago that had a Scout with tourette syndrome. It was very difficult. We all understood what the situation was and he was fully medicated, but the disruption he caused created many problems within the troop and his patrol in particular.

 

It was painful to watch him stuggle internally with the syndrome. I saw that he wanted to act one way, yet couldn't control his actions. He would at times cringe as he said the things he couldn't stop himself from saying.

 

Most Scouts and Scouters are unfortunately, unprepared to handle this type of problem.

[Liz]

Tourrette's runs in my family so I have a fair amount of experience with and knowledge about it, given that I'm not a medical person or anything.

 

First, I would definitely talk to the boy's parents. I would find out what, if any, diagnosis the child has, and what, if anything, you have their permission to share with the other boys.

 

The other suggestions about using this as a learning tool for the kids, understanding differences and disabilities, are all wonderful -- so I won't repeat them. :-)

 

Remember, if the child has T.S., any attempt to suppress the symptoms cause a great deal of distress for the child and will most likely cause larger outbursts when he can't hold back any more. It's kind of like trying to hold back a cough or a sneeze; sometimes you can do it for a while, but you can't keep it up, and it can make the symptom worse in the long run. Ideally, the kid should feel comfortable enough in his den that any tics or vocalizations that aren't destructive or hurtful shouldn't be something he has to feel embarrassed about or try to hide. Chances are, if it's T.S., the symptoms will peak in his pre-teen years, and then diminish somewhat after puberty.

 

If the child's behavior is destructive, not just distracting, then you may have to deal a little bit differently with it. Medication can help, but the side effects are nothing to mess around with so if it were MY child, I'd have to carefully balance his social development and the severity of his behavior against the side effects of medication... it wouldn't be an easy choice; so as his den leader you need to be understanding that the parents really don't have a magic solution to the problem. It's also SO hard to figure out what's a behavior problem and what's a neurological problem; T.S. can come along with many other issues besides just tics and vocalizations, including anxiety, paranoia, and even mild hallucinations.

 

Good luck. I think Scouting can be such a good experience for kids with neurological differences, because they grow up with a group of friends who have an opportunity to get to know the boy and are most likely not going to be as cruel as the school kids.

 

-Elizabeth

[TwoXForr]

Joined a troop that had a boy with Tourettes, he was a teenager at the time.

 

No major problems, it just took him a little longer to get a point across sometimes.

 

He made Eagle, and is now in college, doing quite well from what I hear.

[Sulla]

Were the boy's parents candid about his condition when he started Scouts, or were you left to figure out that he was "different" on your own? Some things are more obvious than others; the kid that may seem to be a "problem" might have something more going on. I saw it all too often in our Pack.

 

It's unfair to those adults who give of their time and efforts to present Scouting, but who usually lack the awareness training or educational credentials to deal with these situations. It's just the way of the world unfortunately. As another poster observed, most Scouts and Scouters are simply unprepared to deal with things like this.

[Scouter&mom]

My concern is if the parents told the leaders about the condition. If the parents didn't, then the leader needs to very discretely discuss the issue with the parents. Most leaders are not professionals trained to diagnose conditions like this. If and when the parents acknowledge there is a true diagnosis, the the leader should check with district/council for assistance and referral to the manual on working with scouts with disabilities. Another thought if the scout does have a diagnosis, they might have a therapist, who with the parents permission, might be able to provide guidance. Also my daughter, an Occupational therapist, recommends the Scouting for Youth with Disabilities Manual, (From any Scout Shop #34059) for any adult working with kids with disabilities.

[Sulla]

Scouter&mom..........

 

All I can say is "Amen."