Joanne CHARGE IEP

[Guest guest]

Hello Joanne,

I was saddened to read your letter about Eddie's IEP. The story is so familiar

in many ways. Our daughter had limited communication at age 8 and has improved

over the years. Many people said that language development wasn't possible

after a certain age, but I very strongly disagree.

One of the issues I totally regret is that Kendra did not have PECS beyond

kindergarten. She was doing really well with it but the first grade teacher

didn't actually know what to do, so it was stopped. We have done PECS at home

and I would strongly encourage you to do that also if at all possible. I

attended at PECS workshop which was very worthwhile. Perhaps the most exciting

thing I heard during the workshop was that two inidividuals, who were age 30 and

above, had learned to communicate and then verbalize through the use of PECS. I

can tell you it was a very moving videotape that told this story at the

training. Others had given up on the two individuals previously.

It is exactly this kind of issue that led me to apply to a graduate program in

communicative disorders. I have completed one of three years leading to the

master's degree. I figured it I can't beat them I could join them :-) and affect

really critical changes in the speech and language community. There are some

truly wonderful individuals out there who understand the importance of

supporting language development, but they are few and very far between.

Is a speech and language pathologist on the IEP team? This person should have

the letters SLP, CCC after their name. If they do not, they may not be a speech

pathologist but rather a teacher who teaches speech. Or, it's possible they

obtained their degree prior to the requirement of a masters degree being in

place. Ask for the research based justification for what they are proposing.

Ask them to provide you with information that removing the PECS and focusing on

an already acquired skill will help him progress. Find out if they have actual

PECS trained individuals on staff.

Does Eddie have limb apraxia that affects his sign output? Our daughter has

this condition and working with her with hand over hand and in small steps has

been tremendously helpful.

Other specialists that can help you and which should be on the team if vision

loss is part of Eddie's profile are deaf blind specialists or teachers of the

blind.

I can tell you from personal experience that 'yes' and 'no' are not necessarily

obtained prior to other communicative intents and expressions. Kendra can read

and sign more than 500 hundred signs. She can read and she can type up to

fourteen word sentences of ASL/English at times. But it is only recently that

she uses 'yes' and 'no' correctly. I would not wait for that milestone before

moving on to other things.

One approach that helped our daughter was applied behavioral analysis. She

relaxed and thrived in the supported, predictable environment. Her language

improved. We trained a person who was deaf and used ASL to work with our

daughter in a verbally (in this case, signed). based program.

Eddie's lack of motivation you mention probably has some connection to the rate

of language growth. But, even if the motivation is not tremendous at present, it

sounds like there are some things that DO motivate him enough to communicate.

These factions can be capitalized upon and used to lead to greater language

growth. I always smile thinking of the Appell family who creatively asked their

daughter, Abbey, to request a pillowcase each night when they changed the

linens. There were several choices available to her so she used her expression

to make the request known.

Eddie's IEP should reflect his individual needs. I totally support you in your

viewpoint that taking away the PECS at this point does not appear to have a

valid rationale behind it. Why would something that is working be taken away,

and replaced with something he already knows - which doesn't need practice?

A positive turning point for our daughter came when an aide with fluent ASL

skills was assigned to her thoughout the day. We needed to have an advocate

present with us at the IEP to make this happen.

wkeedy@...

Mom to Kendra, , and Camille

Original message:

To: CHARGE

Sent: Thursday, June 14, 2007 6:41 PM

Subject: Re: New IEP LOWERS the bar. Help!

Joanne Lent Joannelent@...> wrote:

I can't believe what I'm reading. Eddie's new IEP LOWERS the bar. I've

got until Monday night to prepare and I need help.

Eddie will be 8 shortly after the school year starts in September. He

is VERY delayed, non verbal, with no communication system. He uses

gestures and vocalization. He will sign more, milk, and eat

spontaneously, a few others with prompting. He does well with

mayer-johnson-type picture cards, when he's interested in what the

choices are. Unfortunately, he's not interested in much. Still, that

doesn't explain why they took took use of pecs OUT of the iep or why a

new " goal " is pushing something away when he doesn't want it. He does

that already!!!! He needs to take the next step toward communication,

but they don't believe he can understand the concepts " yes " and " no, "

for example, and they want him to master one step before moving on to

the next.

Does anyone know of any articles out there that state that

chargers/deafblind don't necessarily do things in order? That any and

every method of communication should be tried--simultaneously--to give

him the greatest chance to find what works for him? I need ammunition.

Thanks!

joanne

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