Aubrie quirks

September 5, 2006

Hi Michele, well I'm here so I'll venture in my 2 cents.

On the shoes. How to get a kid unstuck-past the problem, onto the solution.

I tell just that, after the crisis, but soon enough she still

remembers it . Like " Gee, you remember the other day when.....shoes

upstairs....and we wanted to go (stress goal as the reward)....but couldn't

because.....well thats called being stuck in the problem. " " So......what would

have worked

so that we could get to library..... " Help her think thru to solution.

You will do this many times, but you are establishing a pattern of

problem-solving that should get stronger and more effective with practice. Then

U can

key her to the process just by saying the word " solution? " .Just always make

" solution " a desirable thing, with smiles, praise and reward.

On the money-that's a really tough, tough concept for our kids-tough beyond

the math involved. It comes in time-repetition at school. can do it

now, but she still doubts herself abit. If you want to reinforce the

teaching at home, you can set up a game over supper-make a menu, or give her

money,

have her " shop " in your pantry for supper ingredients, do it thru play. Or

let the school know she doesn't understand it yet.

Take her and a calculator shopping-with a goal of not spending over $20.00.

You know the routines. It'll come. Let her buy an ice cream cone from you

after supper...and make change. (it has to cost 69 cents, not a dollar LOL)

One of Di's quirks that surfaced this summer was if she had something in her

hand and needed to do something else, to pick up something else-I'd watch

her struggle because she wouldn't put down the other thing first! That took

4-5 reminders over the days. And I expect to see it again, before the new

thought: " oh, put this down first " is established. (Where did that come

from????

Who knows. Seems so obvious, right?)

Another thing she wouldn't do was refill the ice cube trays. The reason, it

turned out, was because she couldn't get them back across the room and into

the bottom freezer we have without spilling. I said to her-you have to

practice, what R U going to do when I'm not around? Go without ice? She came

right back with, " I'll get a fridge with an ice-maker. "

So, be of good cheer. They find " the way " and " their way " .

At Perkins, no one can teach these kids to see. But they can teach them how

to live without vision and effective ways to get the assistance they need.

So, even if we can't go through those brain colobomas, we can go around them.

They don't have to stop us.

in Ma. (, 21 yrs)

September 5, 2006

I have a few stories to share that illustrate some of Aubrie's quirky

thinking. I am looking for any insight into what it means and what, if

anything, I can do to help her.

First of all - OCD-type thing: The other day we were going to the library

so she needed to get her shoes on. She realized they were upstairs, put her

hand to her head and with great anxiety said, " Oh, God. I left them

upstairs. I don't want to go get them. What will I do? " I offered the

suggestion that she could wear her old shoes which were downstairs - but

they don't light up. We didn't have to get to the library so I didn't push

anything or solve this for her. I watched to see how long she'd go on and

how she's process it. She carried on crying and whining for about 30

minutes. She'd say, " I can't figure it out. How will I figure it out? "

She knew she had 2 choices, but was absolutely stuck there. Finally, I

helped her get the old shoes and we went. But she would have gone on

indefinitely.

Then - usually very smart but just can't get money: We went to the movie

last night. She had her own money from the tooth fairy and was thrilled to

be able to buy her own popcorn. DJ didn't want her to spend her money on

popcorn - we'd buy it. But she was so excited and so thrilled to be grown

up and buying her own. So I convinced DJ to just let her do it. I helped

her get out the exact change ($3.50). She paid the cashier, then walked

away before the entire transaction was complete. DJ was ready to pocket her

money and gave the cashier the money for our total order. But then he

decided he'd give her the $3 back. He told her it was her change. I didn't

think she'd go for it - but she was thrilled to have change! " I knew I'd

have change! " she beamed. It didn't occur to her that you can't get $3 back

from $3 - and there's no change when you pay the exact amount.

I know there was a third thing that happened lately - but I can't remember

it now. more if it comes back to me.

Michele W

mom to Aubrie 8 yrs CHaRgE and 14 yrs, wife to DJ

September 5, 2006

Well the money thing doesn't seem too " off " for her age at all (I've just

worked a year in grade three, not all of them " have " money yet). There

seems to be something going on with the other, like a planning issue, like

she gets to a certain point but can't make a decision. Do you think she

just wanted YOU to go up and get them?

Mom to Kennedy 8 (CHARGE), 17, 15, and wife to Graeme

New Brunswick, Canada

http://www.chargesyndrome.info

>

> I have a few stories to share that illustrate some of Aubrie's quirky

> thinking. I am looking for any insight into what it means and what, if

> anything, I can do to help her.

>

> First of all - OCD-type thing: The other day we were going to the library

> so she needed to get her shoes on. She realized they were upstairs, put

> her

> hand to her head and with great anxiety said, " Oh, God. I left them

> upstairs. I don't want to go get them. What will I do? " I offered the

> suggestion that she could wear her old shoes which were downstairs - but

> they don't light up. We didn't have to get to the library so I didn't push

> anything or solve this for her. I watched to see how long she'd go on and

> how she's process it. She carried on crying and whining for about 30

> minutes. She'd say, " I can't figure it out. How will I figure it out? "

> She knew she had 2 choices, but was absolutely stuck there. Finally, I

> helped her get the old shoes and we went. But she would have gone on

> indefinitely.

>

> Then - usually very smart but just can't get money: We went to the movie

> last night. She had her own money from the tooth fairy and was thrilled to

> be able to buy her own popcorn. DJ didn't want her to spend her money on

> popcorn - we'd buy it. But she was so excited and so thrilled to be grown

> up and buying her own. So I convinced DJ to just let her do it. I helped

> her get out the exact change ($3.50). She paid the cashier, then walked

> away before the entire transaction was complete. DJ was ready to pocket

> her

> money and gave the cashier the money for our total order. But then he

> decided he'd give her the $3 back. He told her it was her change. I didn't

> think she'd go for it - but she was thrilled to have change! " I knew I'd

> have change! " she beamed. It didn't occur to her that you can't get $3

> back

> from $3 - and there's no change when you pay the exact amount.

>

> I know there was a third thing that happened lately - but I can't remember

> it now. more if it comes back to me.

>

> Michele W

> mom to Aubrie 8 yrs CHaRgE and 14 yrs, wife to DJ

>

September 5, 2006

Hi Michele,

I am finding it hard with my new learning from HANDLE of how to reply,

not wanting to be a " salesperson " , so I clam up plus not wanting to

say something that is incorrect, because I am just learning the tip of

the iceberg and I don't want to misinform....

I offer this thought about proprioception, because it seems to be a

BIG deal for Dylan, and an impact that is so misunderstood - I hope it

is useful and accurately stated....

In all my prior learning, proprioception is talked about as if it is

just the deep sensors in the joints that help develop awareness of

body in space. I was amazed to find out that true proprioceptive

understading awareness of body in relationship to space and in

relationship of one body part to another, actually requires - tactile,

proprioceptive, and kinesthetic input to the brain, but also vision,

hearing, the inner ear and smell - all of these systems are impacted

in Dylan and many others with CHARGE! It is no wonder Dylan suddenly

started doing a few signs when lying flat on his back and Brown

uses the picture of lying on the couch with one leg crossed over

the other to be able to read.

So what does this have to do with money, with math in general.

Math is all about relationships - how one thing connects to another.

How $3.50 relates to $3.00, how one relates to two and so on. If our

children have to work so hard to organize their systems to get any

sense of their body in space at all, then it seems logical to me that

these concepts will be hard for them. So my solution would be to do

things that strengthen the lower systems over time, so the higher

order skills, such as money can develop in their time or at least to

understand there is a reason for the " mind coloboma "

another example...So what does it have to do with Dylan having it on

his IEP to learn preopsitions for the last 2 years - if he has a

weakly developed propriceptive sense of self, how can he learn words

that describe things that are all relative to something else?

It is just a theory that keeps running through my mind.....

of course there are other answers to why they get stuck in not being

able to make the decision..... I have so much to learn.

Kim

>

> I have a few stories to share that illustrate some of Aubrie's quirky

> thinking. I am looking for any insight into what it means and what, if

> anything, I can do to help her.

>

> First of all - OCD-type thing: The other day we were going to the library

> so she needed to get her shoes on. She realized they were upstairs, put her