Re: Charge- Kinda Long Mental Retardation-evaluations

September 3, 2006

I am just now catching up on things. I don't know how this conversation

started but I just have to jump in here. I too have had all those Psych courses

on evaluations and their results in relation to children diagnosis of mental

retardation and such. Through experience I have learned to just throw that out

the window for our children.

ina, please don't get irriated with what I am about to write. I agree

with much of what you wrote but in life I have learned differently.

The numerical results mean very little for many children who have CHARGE. It

must be known that the tests are basically developed for regular or vanilla

disabled children. There are no tests available that accurately assess

children who are deaf. There certainly are no evaluation procedures for

children who

are as involved as our children. These tests are developed with the concept

of comparison to " regular " students.

I abhor these inaccurate evaluations.

I cannot tell all of you how many times we were told that due to the results

of Patty's testing she needed to be in the class for the mentally retarded.

That occured every single year and I fought it every single year. By the way,

mental retardation is seldom in education. The term all use, inappropriately,

is developmental delay. We as parents know the difference but educators use

these terms inappropriately. Anyway, Patty always performed well above her

" potential. " For those in education you must know that is an impossibility. I

fought all those ridiculous educators and specialists for years and years.

Apparently I still have to. I fought for the most appropriate education for

Patty. I had them throw out those ridiculous evaluations and results. By the

way, the person doing the evaluation must have intense training in the least for

children who are deaf/blind. Without that training scores and results are

misleading, inaccurate and misunderstood.

Thank God I fought for Patty. It was tiresome for me and worse for her but

because I did fight Patty received a better education. It would have been easy

to stick her in the class for those with extreme mental disabilities. That's

an IQ of 80 or less. If she were in there though she would not receive an

appropriate education, she would not have learned and she wouldn't be where she

is today.

The one evaluation we allowed and lived our lives by, Patty's life, was the

results and recommendations when finally when at the age of 14 she went to and

was evaluated at Perkins. They were beyond accuarate. We were thrilled. We

then went back to our school district with the results and modifications

needed. Sad to say our district fought us on those results and modifications.

They also twisted some of the informaiton to meet their expectations. Thank

goodness I was up to snuff on all that. So, I and her wonderful and gifted

regular educators worked together behind the scenes to bring Patty to where she

is

now. Which by the way is further than anyone expected.

Patty graduated from Regular Ed, with assistance, but she did.

As you see I hate those archaic terms, inappropriate misleading evaluations

and " requirements " for our children. Yes, there are children who have CHARGE

who have IQ's that are within those ranges. But how do you find that? There

is no test out there that has been developed to accurately assess our children.

Don't let anyone tell you any different.

Patty is and has been developmentally delayed. That's because of illnesses,

hearing, vision and other issues impacting her access to education and

learning. She also has gaps in areas such as math. That doesn't mean she can't

or

won't. It just takes longer. Patty, as a 21 year old adult, is still learning.

With things such as the gaps in math we modified her access and used things

such as a calculator. With that again she went further than expected. She

will continue to learn all her life. That's what humans do.

I use our experience to look at and help other children and try to raise that

bar. When you lower the bar you lower learning. In education you must bring

the child to the instructional level. If you raise that bar too high you

have brought the child to the frustration level and learning doesn't happen. If

you lower that bar you must know learning doesn't happen then either. If you

bring that bar to the instructional level learning increases. By the way, our

children also need " breaks. "

I hate IQ evaluations solely for diagnostic reasons-for any child but

especially for ours. I am for evaluations done by a professional trained in

servicing children such as ours to discover their current performance level to

then

provide modifications and strategies to educate the child further.

Again, they said Patty couldn't but she did anyway.

That still is the case as an adult.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

September 3, 2006

Whee-whooo! I second that ALL the way!!!

in Ma.

September 5, 2006

Congratulations! Where are you located?

-- Re: Charge- Kinda Long Mental Retardation-evaluations

Well, and I have started a CHARGE clinic. We did four consultations

last spring. We're not doing a lot of them, but will certainly help out

where we can.

Tim Hartshorne

September 5, 2006

Tim,

Have you publicized this anywhere?

To all who don't know Tim he not only won the " Star " in CHARGE last year he

is one of the best CHARGE specialists there is and a professor of Psych at a

university and is currently doing yet another study on CHARGE. He is also

married to who is also in the same department at their university and has

studied CHARGE extensively. More importantly they are parents of a very young

adult who has CHARGE. They've walked the walk.

I have sought advice from him a few times and have received wonderful help.

The first conference I attended spoke at an outbreak session which

described the inappropriate intellectual " labeling " for lack of a better word.

It

was then the fight with those at Patty's school was the hardest. I can

remember sitting there just crying and crying. It was one of those, so I'm not

nuts, sort of deal.

Oh if they were nearby... For those of you who are close to them I would try

like crazy to find out the how and the where and then get my child there to

them.

So Tim, how and where?

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

September 5, 2006

me to bonnie i have met tim a few times he came to my house once4 with rob

oen time and had lunch a great man he is last confrence the aussie conf we

were at we stood out side and mum chatted to him outside the confrence4 room

for half an hour about me about his stuff about charge about lots of stuff

he even introduced my speach that year he is a great man he is the best

professional there is wish he was here to but hes nto lOL so go see him

everyone he is cool and he understnds everything dont think nancy wa in aus

last time dotn think she ever coems otu here but he does and as i said weve

had lunch with him at oru old house i think he might of even gone on our

kayak with me or did he now thats pushign the memory but he did talk about

it i know that and he think he adiised mum on a few things like school im

sure he has on here and in person ant confrences think he might of help a

litle with highschool i think i should archive i know hes posted to mum

about soem of my stuff hugs ellen

>

> Tim,

>

> Have you publicized this anywhere?

>

> To all who don't know Tim he not only won the " Star " in CHARGE last year

> he

> is one of the best CHARGE specialists there is and a professor of Psych at

> a

> university and is currently doing yet another study on CHARGE. He is also

> married to who is also in the same department at their university

> and has

> studied CHARGE extensively. More importantly they are parents of a very

> young

> adult who has CHARGE. They've walked the walk.

>

> I have sought advice from him a few times and have received wonderful

> help.

> The first conference I attended spoke at an outbreak session which

> described the inappropriate intellectual " labeling " for lack of a better

> word. It

> was then the fight with those at Patty's school was the hardest. I can

> remember sitting there just crying and crying. It was one of those, so I'm

> not

> nuts, sort of deal.

>

> Oh if they were nearby... For those of you who are close to them I would

> try

> like crazy to find out the how and the where and then get my child there

> to

> them.

>

> So Tim, how and where?

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

>

September 5, 2006

We are located in Michigan, but what we have done is to travel to the

school in most cases. We've typically spent the first evening with the

family in their home, and then in the morning visited the school and

observed and chatted with people. Then we've done some assessment. In

the afternoon after school I do a two hour CHARGE 101, and then in the

evening has done a Person Centered Plan. The next morning we do a

team meeting, and then fly out. In one case the kid came here for an

assessment, and then went there to do the PCP and the IEP. It has

varied a bit, but if we can get all of those components in, I feel as

though the staff at least knows a lot more about CHARGE, and we are able

to leave with something of a plan in place. It is very time intensive,

which is why we can't do a lot of these, but we can do pieces here and

there as well.

Tim Hartshorne

S. Hartshorne, Ph.D.

Professor of Psychology

Central Michigan University

Mount Pleasant, MI 48859

phone

fax

tim.hartshorne@...

September 5, 2006

Hi Marilyn,

We'll be there for Thanksgiving. What's going on?

Tim

S. Hartshorne, Ph.D.

Professor of Psychology

Central Michigan University

Mount Pleasant, MI 48859

phone

fax

tim.hartshorne@...

September 5, 2006

Tim-

Do you have information on the clinic?

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Tim Hartshorne

Sent: Monday, September 04, 2006 5:17 PM

To: CHARGE

Subject: Re: Charge- Kinda Long Mental Retardation-evaluations

Well, and I have started a CHARGE clinic. We did four consultations

last spring. We're not doing a lot of them, but will certainly help out

where we can.

Tim Hartshorne

September 5, 2006

Tim-

What a wonderful thing for all of us to know about. Thanks!

Michele W

September 5, 2006

Tim:

is having " behavior issues " at school, and Rick and I can't seem to

get our point across about the deafblind/sensory overload aspects that we

feel are causing them. She will just " explode " , starting with hitting and

bad language, sometimes progressing to kicking. There is a meeting today to

discuss this issue. I can't go but Rick is. I'm hoping something positive

comes of this; but I have my concerns. They just don't seem to get that

there are so many things assaulting 's senses at one time, she's

starting puberty and hormones may be rearing their head, she has that

overpowering need for routine...the list goes on and they want an XYZ

solution that will fit all situations when she gets " wild " . You and I both

know that won't happen. Kim said it a great way about the state changes:

We may only " see " 5 things, but there may be 20 other things causing the

behaviors. The school staff doesn't even recognize the start of these

behaviors, even though it is documented in her IEP: giggling, pressing

herself against her desk or the wall, inappropriate responses to requests or

instructions (signing " hahaha " during classroom discussion). I talked to

one of her teachers last week and she wasn't even aware that the IEP stated

needs at least 16 pt. font, and is to have the vocabulary for

certain subjects pre-taught. These two things are huge! What else are they

unaware of that is in the IEP?! She has eight classes in sixth grade, and

has to transition all over campus to access them. And they wonder why she

is acting tired and rebellious.

We're just really, really frustrated right now with 's school. And I

know she must be also. We are trying to get the LEA signed on for an eval

with Perkins, but that is currently not going to happen. We have a needs

assessment meeting on Sept. 15 (to see what needs to be evaluated) and the

LEA wants to use information from that to gather a local team for

assessment. I just see things getting put further and further down the

line, and meanwhile the school can't handle appropriately. We

really feel that she will be better served at Perkins, at least for

evaluation, and possibly for admission.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

Re: Charge- Kinda Long Mental Retardation-evaluations

Hi Marilyn,

We'll be there for Thanksgiving. What's going on?

Tim

S. Hartshorne, Ph.D.

Professor of Psychology

Central Michigan University

Mount Pleasant, MI 48859

phone

fax

tim.hartshorne@...

September 5, 2006

Hi Bonnie,

I have actually not publicized, because I get enough referrals without

doing so, and time is pretty limited. So I was hesitant to say

anything, but if people are interested, they should email me off list

and talk about the issues, and we can go from there.

Thanks for the support!

Tim

S. Hartshorne, Ph.D.

Professor of Psychology

Central Michigan University

Mount Pleasant, MI 48859

phone

fax

tim.hartshorne@...

September 5, 2006

Hi Ellen,

Thanks so much for your comments. I have enjoyed knowing you and your

mum over the years. I first met your mum in 1994. Will you be at the

conference later this month? If so, I'll see you there.

Tim

S. Hartshorne, Ph.D.

Professor of Psychology

Central Michigan University

Mount Pleasant, MI 48859

phone

fax

tim.hartshorne@...

September 5, 2006

Marilyn,

This sounds so familiar. It's why I decided to start doing the

consultations. People just don't get it. We went to Iowa and the kids

teacher said to me they had no idea that behavior problems were common in

CHARGE until I said that in my presentation. They just thought it was an

extremely difficult kid. There are lots of genetic syndromes that have been

identified, and many more to come as genetics continues to make such huge

developments. Challenging behavior is an extremely common condition with

genetic syndromes. I saw a list of syndromes where the kids have autistic

like behavior and there were 15-20 names on the list. What researchers are

trying to do is to figure out what is unique about the behavior in various

syndromes - to try and describe a " behavioral phenotype. " It is not so

helpful to say they have autism or autistic-like features. We want to know

what the behavior is. I have developed a behavioral phenotype for CHARGE.

Jude and I presented it at the conference in Finland where it was

well received. I have written it up for the CHARGE Manual, but so far my

updated chapter has not appeared. But I will copy and paste it into a

message either later today or tomorrow (it's at work, and I'm at home with

the kids due to a half day of school). It is a work in progress, but it may

be helpful as you look at 's behavior and help the school to

understand it.

Tim

September 5, 2006

I'd really appreciate a copy of your work. Rick and I understand, but

getting school to is entirely different. And this year, there are so many

more staff than we've had to try to get the information to sink into.