Explaining son's change to his friends

[Minnesota Mom]

Any advice on how to explain to my son's friends on what is going on with my son? I know some of his friends are wondering why he is doing weird things and not playing like he use to.

[MomWithOCDSon]

How old/young is your DS?

 

Is it that he's unwilling to play with his friends like he used to (separation anxiety), or is it that he's still willing, but his emotional lability, tics or OCD rituals interfere?

 

Obviously, I would think age would dictate the kind and depth of information you might offer here, but also wondering if your son might not have some capacity for sharing some of what he's going through himself? At least to his closest pals?

 

My DS was diagnosed with OCD before PANDAS at the ripe old age of 6. He told his best friend about it at 7, though I'd disclosed it previously to his BF's mom pretty early on, lest she be confronted with some of the behavior on a playdate or whatever. By 9, DS was writing papers and preparing art projects that disclosed his OCD to the entire school . . . he'd decided he wanted to shine a light on it instead of hide in a corner. It all depends on the kid though, for sure, as well as the circumstances.

[peglem]

You might try the analogy of a sick tummy. When your tummy gets sick it acts up and doesn't do what its supposed to do. His brain is ill so his brain is acting up and not doing what its supposed to.

[emmalily]

A computer analogy would be really great, because kids really get that. Relating a PANDAS brain to buggy software has always made sense to me: everything's there but it's just not working properly right now.

[Minnesota Mom]

My son is almost 11. He still wants to play, but it is the age-regression, emotionally lability, hyperactivity. I don't want to put too much focus on the differences for his friends because I'm afraid at some point the teasing might start. I have been letting my son share what he wants and how he wants to with his friends. He usually says, I have OCD from strep and his friends are like what? What is OCD? I usually have to explain it to some degree.

 

 

 

 

 

How old/young is your DS?

 

Is it that he's unwilling to play with his friends like he used to (separation anxiety), or is it that he's still willing, but his emotional lability, tics or OCD rituals interfere?

 

Obviously, I would think age would dictate the kind and depth of information you might offer here, but also wondering if your son might not have some capacity for sharing some of what he's going through himself? At least to his closest pals?

 

My DS was diagnosed with OCD before PANDAS at the ripe old age of 6. He told his best friend about it at 7, though I'd disclosed it previously to his BF's mom pretty early on, lest she be confronted with some of the behavior on a playdate or whatever. By 9, DS was writing papers and preparing art projects that disclosed his OCD to the entire school . . . he'd decided he wanted to shine a light on it instead of hide in a corner. It all depends on the kid though, for sure, as well as the circumstances.

[momaine]

When my daughter had was completely incapacitated by OCD she could still mostly function well around her friends with a little bit of quirkiness thrown in. Most didn't notice or didn't realize there really was something wrong. Like the facial motor tic, one kid mentioned that dd was making funny faces and thought she was doing it on purpose to be funny. Other things she would hide, like when she had to take extra steps, she'd walk behind her friends so they wouldn't see.

 

What I told each kid or family really depended on the kid and the family and how I thought they would take it and how my daughter was doing when around them. My dd always takes a friend to her IVIG apts. because she's way less stressed/OCDish around her friends. So the families of the kids who have come with us, have been completely informed. The kids, who are teenagers, really don't understand the depth of her illness but they know there is an autoimmune disorder with OCD related to strep and now Lyme disease. Dd hides it well around her friends.

 

The ones who I felt would understand were very understanding and helpful. The one I thought might not, isn't hanging around here anymore. (she was always the one to make fun of people behind their backs, and make jokes about kids with tourettes etc.,) Go figure. I did tell her mom but never did tell the dd. I do think her mom must have talked to her about it though. Not sure what she said. Her mom was really nice but I just had this feeling about her dd. All the while she's making jokes about people with tourette's, my dd is ticcing when she's not around. My dd didn't get upset by it because she didn't identify with Tourette's Syndrome but had she not been diagnosed with PANDAS, she would certainly have been diagnosed with TOurette's. (something my dd does NOT want to think about)

 

At that age, I'd keep it simple and tell them he's been sick and it affects how he behaves sometimes and if they need you to intervene in anyway, to please ask you and to be patient with your son while he gets well.