4 yr old with Charge

March 9, 2006

My Sinaya has just turned 4. To my surprise I discovered how much kids are

learning in Kindergarten.

I am a little worried about your learning pattern. She has always met the

milestones yet now it seems she is beginning to have difficulty mastering some

of the basic skills such as writing letters and drawing shapes. Although she can

recognize them when she see them.

Another issue I am having is her behavior toward strangers and change. This is

a good thing when we are out in stores but when she is in a her class room she

will not interact with the kids nor the teacher. I am afraid this will cause her

to be held back.

I have gotten her enrolled in an early intervention program yet her screen

didn't go well considering Sinaya would not talk/respond.

Can anyone please help me help her!!

---------------------------------

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March 9, 2006

Jocelyn,

My son did well doing typical things until he was 4, then he began to throw

his toys instead of play with them, spinning the wheels on the truck instead

of pushing it and things like that; became obsessed with a basting brush

from the kitchen - he then had one in his hand for the next 4+ years. He

would line the brushes up in a row by size, but would not play with toys.

His social skills were always off, sitting at the table to do a cooking

project with his peers did not have any meaning to him, especially since he

wasn't understanding the signing either so we did not worry much then about

the not being engaged. The behavior started with the throwing of toys and

clearing of tables, desks, and so on. Towards the end of that phase he

began the slapping at people's faces to play. For all practical purposes he

fully met the diagnostic criteria for autism.

We did a couple things that I believe helped him - I am not sure how much

use to you they are, since your daughter's problems may be from a very

different reason and the people you have in your area to help you may be

different, but I share this to share hope that for Dylan this appearing so

autistic did not last once we figured out the best ways to help him. (I am

also not saying she is the same as Dylan, but the lack of attending socially

is often interpreted as autistic-like)

The first was to recognize that he was not fully able to process everything

he saw, so even though he could pick out a bit of lint off a tan carpet, and

he seemed to see well enough to get around without bumping into things, his

brain could not make sense of the movements of sign language. We did

specific interventions to help his brain understand what he saw better and

that helped a lot.

The next thing was to help him figure out how to what I call " organize his

nervous system " . We did this through the help of HANDLE Institute.

Now 1 and 1/2 years later he is finally being able to participate in the

learning of concepts - I knew he understood them in his head, but we had no

way to talk about them or give words to them. Now he is writing 3 word

sentences using either pictures of the sign or pictures of the object and he

is beginning to sign words.

But I think the biggest change for me is that he now looks at people's faces

and is engaged socially.

He still has the impact of combined vision and hearing loss, no

semi-ciruclar canals and all that, but he is back to what I would consider

" normal " development when considering those factors. It is night and day

different than the " autistic-like " years.

I think my best advice is to find the right people to evaluate your daughter

- so you get information that makes sense to you. I always knew Dylan had

the cognition even though he didn't have the skills that proved it. If his

team had insisted that he was just retarded and not expect him to learn then

that is no good. The trick is finding the team that will work with you to

help you figure out what works best for your daughter and this takes time.

Kim

> My Sinaya has just turned 4. To my surprise I discovered how much kids are

> learning in Kindergarten.

> I am a little worried about your learning pattern. She has always met the

> milestones yet now it seems she is beginning to have difficulty mastering some

> of the basic skills such as writing letters and drawing shapes. Although she

> can recognize them when she see them.

> Another issue I am having is her behavior toward strangers and change. This

> is a good thing when we are out in stores but when she is in a her class room

> she will not interact with the kids nor the teacher. I am afraid this will

> cause her to be held back.

> I have gotten her enrolled in an early intervention program yet her screen

> didn't go well considering Sinaya would not talk/respond.

> Can anyone please help me help her!!

>

> ---------------------------------

> Yahoo! Mail

> Bring photos to life! New PhotoMail makes sharing a breeze.

>

March 9, 2006

Jocelyn-

The things you are seeing in Sinaya sound a bit like what we are seeing in

my Aubrie. These things have always been there. I have thought of them as

" quirks " cuz I have no other way to describe them. I've been aware of the

way these differences in learning and processing have impacted other kids

older than Aubrie so I've been watching and wondering. Well, in the past

months, they've finally became big enough to interfere with her learning and

interacting at school. She's in a regular 2nd grade classroom with a 1:1

aide and lots of therapies. She's been doing quite well academically and ok

socially. But suddenly, it seems she's hit her threshold of keeping it

" together " . She's having a hard time paying attention. When I study with

her at home, and even in everyday interactions, I can see that her gears

just don't click the way other kids' do.

We have found a pediatric neurodevelopmental psychologist to help us

evaluate what's going on and develop a plan to manage it. I don't expect

it's anything that can be " cured " , but I do expect that we can do things to

help her achieve her true potential, stay on task better, etc. I am also

attending a HANDLE Institute 2-day course on " Understanding

Neurodevelopmental Differences " in the Chicago area. I hope that will give

me the basic understanding I need to better understand the doctor's reports

and plans.

It took me a long time to find the right doctor in our state and I have to

travel 4 hours to get to her. HANDLE is based out of Seattle but does reach

out to kids all over the country.

Just sharing what we are doing to offer suggested paths for you. As Colleen

said in an unrelated post, the behaviors really stretch us since there is no

easy fix.

On the CHARGE Syndrome Foundation website, there is a link to the articles

in a recent journal publication-- all about CHARGE behaviors. Some of those

articles may give you insights and may be helpful to the doctor or

therapists who might help you along the way. Also, in the CHARGE UK Family

Support Group newsletter (link:

http://www.widerworld.co.uk/charge/January%202006%20newsletter_files/January

%202006%20newsletter.htm ) there is a glossary of CHARGE behaviors that I

copied and shared with all of Aubrie's IEP team to help them understand the

issues I was concerned about. It helps for them to see in writing that

these things are real and not just something you are creating. It also

helps for them to understand that even the CHARGE experts don't totally

understand why our kids have these issues or the best way to manage them --

so why should your local providers think they will have all the answers?

Gives justification for consulting outside resources.

I'm going on and probably overwhelming you with info that you may not need.

This is our big issue right now so you got me on a roll!

Michele W

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

March 9, 2006