The Purple Beads Story (on video)

Thank you to everyone for your good wishes about finding Charlie's purple beads. Alas, the beads have yet to be found.

As a result of which, Charlie and I didn't set off for the Big Autism Center till 8.44am. School starts at 8.45am so we were a bit late. 

Charlie had gotten up, showered, and got dressed, then refused to budge from his room. Again and again he said:

'Purple beads! Purple beads!'

He keeps the beads etc. on his bed so I suppose he was maybe thinking that, when he awoke, they would magically reappear but alas, this did not transpire. And from the look on his face and the ultra determined set of his features, I could tell that Charlie would not be moved. He being very far past the age of carrying, and him being, technically, rather able to carry me, I knew I had to resort to Other Methods.

Since we got this iPad, better use it, right?

I went downstairs, opened Stories2Learn, and made a social story entitled Purple Beads (I know, very original---I try to keep things simple for Charlie and to use a minimum of words). There's a video of the story here.

As I uploaded photos and recorded some sort phrases, I kept thinking, how to explain to Charlie about the beads being lost in a way that wouldn't bring down a reaction of woe and devastation?  

I included a phrase with 'maybe' ---as in, maybe the beads are somewhere in the white car (a true statement, I would say)--- as that's a concept we've been working on with Charlie, albeit a very difficult one. 

And occured to me, that Charlie has indeed lost or had to say good bye to things he liked, that he loved---Barney---and the analogy of losing Barney/feeling bad/getting over this loss was a worthwhile idea to mention to Charlie, to explain what was going on with the worry beads.

Charlie heard me recording the phrases and repeated a few from his room. I brought the iPad up to hi, and we went through the Purple Beads story after which Charlie took the iPad and set it on his bed. I went out of his room and after a few minutes, Charlie came clomping down the stairs. He put the iPad in the backseat, brought down the rest of the beads and things, and I locked the front door.

It wasn't his best day at school, though nothing of a behaviorist-leaving-voicemails sort occurred. Charlie was fine on the bus and then, after checking the white car, kept asking for the beads. I brought out the iPad and we went over the Purple Beads story and Charlie and Jim went for a bike ride.

Despite some frustrating moments, including an evening thunderstorm that cut short a second bike ride and despite my parents' plane getting diverted to Syracuse so they arrived a couple of hours late, after we'd told Charlie they would be coming (I quickly added a new page to his Gong Gong and Po Po visit story: 'Because it is raining and thunder, Gong Gong and Po Po will be coming late')----despite all that, Charlie held himself together and stopped asking for the infamous beads.

Yes, I am giving my parents and Jim a fast iPad tutorial before I leave for Ottawa Thursday afternoon. Though it's likely Charlie can show them himself how to use it.

 

Comments

[emma]

Thanks for putting the video up, a great example of the app in use.

Hoping that Charlie will not feel the lose of the beads too greatly (or that they will be found). The iPad seems to be handy for explaining, previously you might have written a couple of sentences for Charlie to read, no?

Hope the workshop goes well!

[feebee]

I've been thinking of you guys today.

[autismvox]

Charlie didn't ask for the beads this morning. Maybe, maybe, he's accepted them being gone?

I'm in Ottawa now. Waiting for the home report!

[Jill]

Ave atque vale purple beads!

[gretchen]

Charlie, I've said it before- you are something else! Way to move past your worrying and missing something! Your mom is pretty smart too :-)

Lately Henry says "it has to be around here somewhere". He's always losing special stuff. Lots of special things that he sleeps with fall down between his bed and his wall. Now he will attempt to get them out by himself before he asks his parents or his brother for help.

[Kent Adams]

Kristina, I want you to listen to this podcast from the Diane Rehm show that was on today. Its about memory and how we often "choke" and how that behavior effects our short term ability to do things. I think this is what is going on in autism, though autism isn't discussed. http://podcastdownload.npr.org/anon.npr-podcasts/podcast/305/510071/130076197/WAMU_130076197.mp3?_kip_ipx=1205422142-1285279067

You can fix your youtube video to show better on the site if you change the embed code. I've changed it here for you to fit the column.

[Kent Adams]

Well, that didn't work very well. Try changing your embed code to 200 width and 175 height.

[autismvox]

@Kent,

thanks for both suggestions---changed the embed code. Will check out the podcast too.

[Barbara]

I'm very impressed with what the video shows. This would be like, I don't know what, in a motor comparison. What a wonderful mechanism of self-expression.

(I had not problem viewing the video - I am thinking I should embed videos at smaller sizes, too.)

I'm late on this post and express my sympathy for the loss of the good teacher you reported in the next post here.

[autismvox]

Thank you, Barbara. Jim went to see his friend last night---the house was dark---she really was a wonderful person.

I've been finding myself trying to use the social stories to help explain concepts to Charlie, like things being lost and how he feels (might feel) about this, and something can he do like 'remembering the purple beads' though remembering is not something one can concretely show, I guess. I think he knows now that he doesn't have Barney and he can survive it---but then, as Kent wrote, he does 'choke' at a difficult moment.

[Sarah]

Hi Kristina and Charlie,

I believe this lovely Purple Beads video models THE REAL "CURE" FOR AUTISM you two keep discovering: Use warmth, ingenuity and patience together to respectfully allow Charlie and others to take the time they need to process the world.

Thanks again,

Sarah