Re: Sheryl, Due Process

[Guest guest]

Sheryl,

Well, we had our meting. Don't know what to do now. We had someone from D/B

services performing the MAPs first. Actually, she was quite wonderful. I've

never had a meeting before like that. All of us (21 people total), one by

one, had to say something wonderful about Patty. Then we had to say where we

think her future looked like-one by-one. That forced those nasty people to

say something nice, wow. Next, we had to put the statements into priorities

and who was responsible for each priority.

Of course we did not get as far as we should. We also did not have her

IEP done, that is supposed to be the result of the MAPs. Told them there

wouldn't be enough time.We were also to talk about the technology (which we

did), speech and OT evaluations.

It was interesting because we finally had someone outside of the school

system, not agreeing with everything said. We also had someone there from

services for the blind. That was nice because she brought up issues I have

brought up for years and yet they have always ignored me. They can't ignore

her as a specialist. (Things like having a true functioning vision eval.)

Patty uses the best of everything she has so they never agree she needed

assistance.

It was also interesting that the classroom teachers disagreed with some

of the specialists. We have been fighting since 1st grade, have it

documented since 3rd grade to have Patty learn computer skills-her writing is

like a third grader still. They have been supposed to have been working on

this. I can't believe they are still fighting us on this. For her to write

is both physically and visually hard. Anyway, we asked for her to use

computers in class. OT said its hard to listen, see the teacher and then

also use computer. The teacher said he disagreed. He talks, writes on the

board and then waits for all students to write after that. He also said this

is what everyone does now and that they need to look at what educators do in

the classroom. So, the OT said Patty is only at copying skills on the

computer. I brought out things Patty does at home-on her own. OT said it is

only journal writing and different skills are involved for school. Next the

english teacher said Patty does writing on the computer sometimes (homework

especially) where she has beginning, body, conclusion. The regular ed

teachers were so cool in kindly disagreeing sometimes with the so-called

specialists.

Not everything was great. The thing that bothered me the most was the

Speech therapist, who is supposed to be servicing patty but really hasn't

yet. Patty doesn't even know her name. She said Patty needs more help in

math and social issues, (which is true)... She said we need to look at

correct program placement. When asked who would provide this service, she

said the teacher who is the educator in the mentally retarded class.

Remember, Patty is in full inclusion, has always been and will always be. I

have nothing against that class or the teacher. As a matter of fact, she is

one of the best teachers in the district. It is just not appropriate for

Patty. Of course she needs skills like math to be able to buy something and

know how much money to give and then get back, but they will not place her

there. Patty can't add or subtract well but she gets the concept in solving

equations finding perimeter and other skills. Patty will never be able to

add or subtract quickly but isn't a that one of the reasons calculators have

been invented.

Another thing I have for years been telling them -besides her

disabilities I felt she also had learning disabilities. They have told me

there was no way she can receive LD intervention because there is no way to

test her. At least now others are also saying she might have LD issues, one

of these is Perkins evaluation.

I can't believe after all these years they still do not understand my

daughters disabilities and how to appropriately educate her. They have

always tried to place her in a contained class -ALWAYS. She is now in high

school and that statement is still being said. It would be so easy for them.

The regular educators have been great. They take my child and know they

haven't had a student like her. They are willing to try new ideas. They are

willing to acknowledge they don't know everything. They are willing to ask

questions. They also value her as a person and they believe in her learning

something relevant. Then there are her special educators. They think they

know it all and are not willing to bend in any way. They are insulted when

you don't agree them. They are also the ones who have limited her learning

and do not believe in her.

You know, Patty was such an ill baby. We fought to keep her alive,

fought to have her communicate. They have made so many errors. She is one

of the first children to go through the school system with multiple

disabilities in the regular education setting. We have always been given

lower expectations then what she has accomplished. (both health and

educational).

The meeting had to end-people had to leave and we didn't even set goals

or make recommendations. They wanted to reconvene next week. Yet, no one

asked about CHARGE or how it impacts her life or education. We are going to

have a meeting first about CHARGE for everyone in Dec, 14th and then we will

finish her IEP.

Now, we don't know what to do. Because of the D/B specialist and the

specialist for the blind being involved we think they might help. So do we

call our lawyer? We recently one who knew my father. He even has a case in

superior court right now and looks like he will win. What do we do? It is a

hard decision. We called a few advocacy places for the disabled and they

think we should go to the hearing process. I just don't know. Of course

there is more involved here than I have written.

My daughter is going to graduate in less than 4 years. She is such a cool

person. We no worry about how will they finally appropriately educate her to

her utmost abilites to be a functioning HAPPY person in society.

Wow, guess this was long again. Sorry.

Bonnie, Mom to Kris 17, Patty CHARGE 15 and wife to

[Guest guest]

Anne,

Thank you. I don't know about this intervener thing. Is that like her

one on one? The lunch room and social situations are now one of the hardest

things for her. That is what came out as obvious through this maps. Though

the school system has never looked at this or done anything about her social

needs.

I will print out your message, if you will agree, so I can go over a few

of your statements.

For testing, have you gotten in touch with anyone from Perkins school for

the Blind (deaf/blind) and the Helen Keller Institute? Where in Canada are

you anyway? My side of the family is from Canada-Grandparents.

Wish Patty had people like you when she was younger, and now. Keep

learning and sharing with us. I know I sure need it. Thanks for

everything--again. You do help. So does each and every one of you on this

list. It has made a remarkable difference in our lives here.

Bonnie

[Guest guest]

Re: Sheryl, Due Process

Bonnie:

Not Sheryl, but can't help but look at this one!!! This has been very

interesting!! I have never heard of an IEP still not completed this late in

the year, and yet still talking about placement??? (other then !!)

Just a couple of quick points. Did they ever bring up the subject of

getting Patty an " intervenor " to help facilitate learning in the regular

classes, during social times, and maybe for a placement in co-op? Although

the setting I work in is not inclusive, I am grateful for the experience of

working with so many similar children. The resource consultants have many

examples of successful inclusion across the Province when using a trained

intervenor and helping to create the understanding so the school can be

flexible and willing to make adaptations needed for a very unique

disablility. The lunch room as just as important then any classroom and

social functioning can be so much more enhanced using intervention.

Back to the learning experiences...many of my students with

deafblindness learned money and classification skills by the co-op....ex.

setting up a snack store in staff room or lounge. We had direct exchange

on certain days where they would sell mostly to the secretaries, some

students on spares,etc. and also a money drop in the staff room. We had to

work in budget, shopping, calculator skills, profit, counting, change,

etc... Also it has been our experience to introduce keyboarding and

computer as soon as possible. (even the 5 yr olds were using simple switches

and " intell-a-keys " ) Many of the children loose out so much because the fine

motor takes so long to catch up. The students I have now all have visual

impairment/learning disabilities and do so much better on the computer.

Our school psychologist is now working with the Provincial School for

Learning Disabilities to formulate some testing guildlines for visually

impaired. The most important thing is for no one to limit the potential of

any student.

Ann Gloyn, Deafblind Specialist Teacher, Canada

> From: TURK22082@...

[Guest guest]

Hi Bonnie,

You are being great parents to Patty and she is very blessed. I know you

feel like screaming but try one step at a time...D/B services should be

good at helping you with a plan for advocacy..they have helped me ( I work

at a D/B service) and have listened to me rant and rave! All the best in

you battle and Patty will come out the winner!

Take care and Happy Thanksgiving!

Jackie Kenley, Mom to 20, nah 16, and the CHARGE lady, 14

[Guest guest]

Ann,

After all these years when Patty was diagnosed with CHARGE, finally our

school district sent us to Perkins School for testing. I always refused it

because of lack of knowledge on how to modify tests appropriately. Anyway,

we were there two days and did almost the whole battery last April. They

were absolutely wonderful! Each and every one! They then wrote up their

reports, very intensive and well done. I thought finally someone with

knowledge will be listened to. Well, we are still in there fighting. It is

quite a long story but we had a meeting in June to go over the evaluation but

had to reconviene-till August, one week before school (she transitioned to

high school). At that meeting we basically fought over the issue of weathor

to do a technology evaluation for her. It says on the IEP we went over

Perkins Eval, but didn't really. We only touched the surface.

The school also wanted to do an OT and Speech eval because these

specialists never met Patty before and also said they didn't think she needed

such intense services. Idiots! These are the ones in our home district, not

Perkins-they already did theirs though they never met Patty before either yet

they know about deaf/blind and CHARGE. The school also said she doesn't need

O & M. At that meeting I asked them to get in touch with Helen Keller to do a

Futures Plan.

Now this meeting. We had to go over the evaluations and do the Maps and

develop an IEP from 1:00 to 4:00. I told them they didn't have time, I was

right.

Now I have attained an attorney and have gotten in touch with many

advocacy programs. They tell me to go to hearing. What is stopping me is

the people from New England Deaf/Blind (I think they are Perkins too, I don't

know) and Services for the Blind may be able to help me without such a battle.

At the end of the last meeting stated his displeasure that not one

person from our district asked about CHARGE and how it impacts her education

and life. Before we finish this IEP, we are having an inservice for everyone

about CHARGE. After that we will meet to go over goals and recommendations.

It is now almost Dec. and we will be finishing what we started in June.

She transitioned like this. Patty is such a cool kid, a fighter, that she is

in there doing the best she can and doesn't complain. Actually, they put her

through so much stress. She works so hard with little down time.

Again, Perkins School was tremendous! Not only did the evaluate her

appropriately, they were so tender in acknowledging our feelings. They

worked so hard, eventually our district must take into consideration the

report they sent. Also Helen Keller is there to help us. These people are

also involved with DB-Link. AND, they KNOW about CHARGE, unlike most. That

is what is stopping us from going the route of our attorney, we are still

wondering though. He says that he believes they are hampering Patty's

learning because they have neglected, for years, to take into consideration

Patty's many disabilities and have not given her an appropriate education.

For example, one of her most disabling disabilities is her hearing

impairment. She has always used an FM Unit, yet she hasn't had a teacher for

the hearing impaired since third grade, she is now in ninth. I could go on

an on.

Both Perkins and Helen Keller are wonderful institutions with great

knowledge and expertise. Also wonderful is the communication skills also

from everyone. I can't say enough about them. I found great support knowing

they have such knowledge about Patty and CHARGE, which also halps us

emotionally. They do not know about some stuff, like the attorney. And I do

not need to inform them about this, they just do the right thing because they

are experts. You don't get much better than them.

Bonnie, Mom to Kris 17, Patty CHARGE 15 and wife to