Social Story describing PANDAS to a child

[airial95]

The ESE specialist who has been working with my son thinks that writing a social story for him about PANDAS and how it makes him "special" might help. He responds very well to social stories (he just turned 3), and eventhough he doesn't know what's going on with him medically (just that he sees lots of fun doctors), he will tell us that his "brain feels yucky" today, and things like that...

 

She thought that helping him understand what was going on might help him seperate himself from the "disease" (He gets very upset with himself when he has rages and meltdowns since he can't control them, which makes things kind of worse).

 

I'm going to be taking a crack at putting one together - any suggestions???

[kferricks]

The ESE specialist who has been working with my son thinks that writing a social story for him about PANDAS and how it makes him "special" might help. He responds very well to social stories (he just turned 3), and eventhough he doesn't know what's going on with him medically (just that he sees lots of fun doctors), he will tell us that his "brain feels yucky" today, and things like that...

 

She thought that helping him understand what was going on might help him seperate himself from the "disease" (He gets very upset with himself when he has rages and meltdowns since he can't control them, which makes things kind of worse).

 

I'm going to be taking a crack at putting one together - any suggestions???

 

Give the bad thing a name. For instance, my dd gave the ocd a name. That name is Minus. She came up with that particular name because a battery has two sides. A plus and a minus. The plus side is positive ~ that is Haleys names. The negative side is Minus. Great way to differenciate between the disease and your son.

 

Hope we get to read the story when your done too!

[thereishope]

I stumbled on this book that was written by a PANDAS mom, but I have NOT bought it.I have NOT read it. Here's the website for the book http://www.youareagreatkid.com/ The website refers to mental illness, something I would NEVER do for PANDAS, so I do not know if they use that phrase in the book.

 

Otherwise, I have used phrases like "Do you have yucky thoughts".

 

This won't help for a book, but when my son would have internal fights with bad thoughts or OCD, I would sometimes have him yell out loud to his brain to stop messing with him. If he said the thoughts weren't letting him, I would then warn him that I am not about to yell at him but yell at the thoughts. I would stoop down to his level, look at his forehead and tell those thoughts to leave my boy alone! I'd yell that they are not allowed to scare him. This didn't always work, but sometimes it did. It is very improtant to keep explaining you are not yelling at them, but those thoughts.

[airial95]

Thanks for the suggestions. My husband and I were brainstorming last night and trying to come up with ideas and an outline. Originally we were trying to do a traditional social story to explain it specific to our child, but we were having a hard time. Once my husband described PANDAS as my son's brain caught in a warzone, and we thought that maybe that might be a way to explain what's happening in his little body and how we know he's not a bad kid - it's the "bad guys". I think this is our outline so far - suggestions and critisisms are always welcome!!!

 

-Our bodies have armies of soldiers to protect us from getting sick (antibodies)

- Sometimes bad guys get in and the army helps fight them off (strep)

- Our brain is protected by a special fort to keep it safe from the bad guys (Blood Brain Barrier)

- In some kids, the fort has a back door that lets some of the bad guys in (inflamation)

- When the soldiers try to go in and get the bad guys, they get confused, and sometimes attack the people inside the fort too (autoimmune response)

- When the soldiers are fighting inside the fort, it causes all sorts of bad things (OCD, tics, etc...)

- We have to retrain the soldiers (medicine, IVIG, etc...) and rebuild the fort(behavior therapy, special ed)

- You can help be a good soldier too (talk back to the OCD, good hygeine to keep from getting sick)

 

 

Obviously as we write it, we're not going to include the actual medical terms, and we'll be using specific examples of his OCD and tics, and specific coping things he can use to "battle" it. We have a cousin who is an artist who illustrates kids books who we're going to ask to draw the pictures for us.

 

Thoughts??

[ajcire]

Vickie, thanks for sharing that link. Interesting... seems to stress the mood changes a lot. My son doesn't present with the clear ocd things or major tics so it makes it hard to find anything appropriate... but the mood changes and over reactivness to things that shouldn't get such intense reactions... that he could relate to. Wish I could see a few more pages to see if I really thought it would be appropriate for my son or not.

[thereishope]

I'd like to see it too, but I don't like spending money when I don't know what I'm getting:) I checked my library system and they don't have it. Maybe if I find myself at a Borders or something, I'll see if they have it.

 

Vickie, thanks for sharing that link. Interesting... seems to stress the mood changes a lot. My son doesn't present with the clear ocd things or major tics so it makes it hard to find anything appropriate... but the mood changes and over reactivness to things that shouldn't get such intense reactions... that he could relate to. Wish I could see a few more pages to see if I really thought it would be appropriate for my son or not.

[KaraM]

Has anyone ever read "Waiting for Benjamin?" It is about an Autistic child.

 

I haven't but just found it on line. Here is a link and the description:

 

http://www.marcoproducts.com/waitingbenjamin.html

 

When a younger sibling acts differently, it is often hard for the older sibling too understand Benjamin is Alexander’s younger brother, but he doesn’t behave like other little boys. Alexander is confused. Alexander is eight-years-old. This touching story centers on a common theme found in homes and classrooms—lack of understanding someone whose behavior is different. The story: • Examines the behavior of an autistic child • Reveals the feelings of rejection, confusion, and fear of the older child • Gives an explanation of autism as one would explain it to a child

 

TOPIC: Autism

 

INCLUDES: Story

 

AUTHOR: Alexandra Jessup Altman

 

GRADE LEVELS: 1-4/AGES: 6-9

 

RECOMMENDED FOR: Elementary-school counselors, special education personnel, parents

 

8 x 10, 32 pages, Hardcover, Color Illustrations, 2008

[fsilverpsych]

Vickie.... love your approach! I'm a psychologist with a 5-yr-old son with PANDAS. I remember learning a technique in grad school about helping children externalize a problem and give it a name that they can "talk back" to. I like your approach!