Any advice or feedback

[Guest guest]

Hi,

I have occasionally posted with questions and comments, but what happened to

me today really blows my mind and I felt I had to share it with the group.

To give a little background, my son Liam who will be 3 in February has

apraxia, sensory issues, and visual motor processing problems as well as

delays in receptive and expressive language. All this adds up to one little

boy who is very hard to categorize or put into a nice little box.

Anyway, I met this morning with the special education professionals from the

public school department to transition him to public preschool. I had

already had one meeting with the director, who seemed on top of things and

asked all the right questions at the initial intake one month previously. At

that time, the director indicated that she had all the information she

needed and wouldn't be requiring any other test scores or paperwork. My

Early Intervention educator (one of the supervisors at Meeting Street Center

in East Providence, RI and a fabulous clinician) made sure that all of the

appropriate current testing and paperwork were sent to the transition team

with plenty of time for them to review everything and call with any

questions before the next meeting took place.

Fast forward 4 weeks. Upon sitting down with these " professionals " for the

second meeting at which eligibility is determined, the first thing I and the

EI supervisor were told was, " We don't have any test scores, we don't have

enough information, we need more. Maybe a Mullen test. We need to quantify

him so he will qualify for services. " They had absolutely no regard for the

50+ pages of detailed evaluations and test results that I provided for them.

In fact, the director of special services claimed never to have received the

latest assessment from EI, which I signed off on and I know for a fact that

the EI supervisor sent 1 month previously. It was quite clear to me that

neither the director of special services nor the speech pathologist or case

manager had even looked through my son's file. They were looking through the

paperwork for the first time at that meeting. After the EI supervisor and I

explained all the different ways that Liam had already been evaluated and

the results that were available, all they did was insist on more testing,

even though it would be totally unhelpful and not give a true picture of his

skills.

The Early Intervention supervisor, who is a consummate professional, almost

lost her cool, she was so livid. She couldn't believe the level of

unprofessionalism and disorganization. At the end of the meeting, upon

realizing that there was a great deal of information on my son that they

hadn't even bothered to look at, the case manager said, " Well, now we will

have to review all this information and meet again to determine eligibility.

It will have to be in mid-January. " Huh?? Wasn't that what this meeting was

supposed to be about? As we left, it occurred to me that it might be awfully

difficult to squeeze in 2 more meetings and an IEP meeting to ensure that

Liam starts receiving services by his 3rd birthday..that is if I actually

want to entrust his education to these people...

I'm sorry this is so long. I just had to vent. Any advice or feedback would

be greatly appreciated.

Mom to Liam, turning 3 in February and making great progress

[Guest guest]

-if they are playing games -they are messing with the wrong

person and they will soon learn that. Or do they already know you

volunteer for Teaching Every Way?

" Teaching Every Way (TEW) is a nonprofit agency that acts as a

resource both for parents of children with special learning needs,

or learning differences, and for learning institutions. Our goal is

to raise awareness within the educational community and amongst the

general public regarding the issue of learning differences and to

fund programs and services that assist children with learning

differences. In addition to sponsoring educational programs and a

grant program, TEW will create a resource network designed to keep

parents, teachers, school administrators, policymakers and the

public informed about news, resources, and other information related

to learning differences, as well as a support network for parents of

children with learning differences. "

http://www.teachingeveryway.org/

You did all the right things to help Liam -none of us could have

advised you differently up till now. (you don't always want to go

in with a tape recorder to the first meeting)

My advice now -paper trail everything up till now and going ahead.

Make sure all correspondence is in writing, write down all phone

calls to or from and what was discussed and how long on the phone

etc. -and tape record all meetings going ahead. Of course you can

still do all this with a smile, they don't have to know you don't

trust them with even the hair on Liam's head at this point. You can

say you are taping because " there is just so much going on I want to

be able to listen to the tape later to understand everything "

or " Over the Holiday's I thought I'd play this tape instead of the

same old -same old " -they didn't declare war yet -just game time.

They probably do know who you are and what you are looking for -so

this most likely was a stall -Did you read what I 'just' wrote to

?

" To get the ball rolling since schools have a history of dragging

their feet when it comes to things like this -what you want to do

today or tomorrow is in writing either drop off or fax, 'and' send

certified mail return receipt requested an immediate request to have

Abigail's IEP reopened. Write that there is a " change in diagnosis "

and you want an " immediate " meeting - which will put a bit of a rush

on them scheduling an IEP meeting with you (trust me -won't be

immediate) "

Time is critical for our children -the research is there to back

that up. I would have the EI professional who was livid put it all

in a letter on your behalf -and keep that as part of your paper

trail. See if she will also put in writing that in spite of the

(fill in amount) of written documents and evaluations about Liam

that were sent to your school by EI on (whatever date) that in one

month and with numerous conversations -no mention of the papers was

ever brought up. See now if it was me -I would sit there with a

straight face and ask the director if her name was Dora. (Private

joke to those of us who saw Finding Nemo) (also -note to self -make

sure in the future that all is sent to school return receipt

requested. Believe it or not you could personally hand them the

papers and could sit at an IEP meeting where when you bring up such

papers you get a blank and confused look)

In your case -my gut tells me that they are stalling not to deny

services by the time Liam turns three -I don't think they would be

that professionally suicidal with someone like you -it's probably a

stall to try to give you less time to advocate for not just

placement (as if that was a question!) but to try to distract you

from advocating for 'appropriate " placement.

Kanter who I'll always love and miss -the director of The

Summit Speech School who NOBODY could mess with taught me " -you

have to learn how to play the game. Relax " So - -this advice

is on you. Take this break to tour some out of district placements

in your area. And of course I would start with the oral deaf

schools for the hearing impaired.

There is much in the archives about my son Tanner who was one of

many that thrived in this type of multisensory placement. (and I

know we talked about)

(from the archives)

" I don't know how I'll ever be able to think of the Summit Speech

School without thinking of , in awe of her -and can not

imagine that school without that amazing lady running it. No wonder

members here are having trouble getting their hearing apraxic

children into that school today - apparently wasn't there to

help bring our children a voice anymore -she was too sick.

Please quote her to whoever tells you that your child isn't able to

attend this school (or one like it) if they are not deaf -her

message should carry on even though she is no longer with us. " Our

hope and our goal is to mainstream these children into their local

kindergartens " Kanter -Executive Director Summit Speech

School. " children with apraxia appear to benefit from the same

therapies as their hearing impaired peers "

http://www.cherab.org/news/insideedition.html

Here are a two links

http://www.oraldeafed.org/

http://deafness.about.com/cs/schoolsus/index.htm

I have a thought -Maybe we all have to go to ISPY.com (not sure if

that's a real site -just a quick thought) so that we could place

small video cameras around our necks when we meet with the school.

(and for those of you with children being " treated inappropriately "

(abused) by being tied to desks and chairs and locked in

bathrooms...I can't believe I'm even writing this and that this is

happening!! Maybe... we need to have it written into our kids IEPs

that we will send our kids to school with an attached video baby

monitor so we can watch what's going on with our verbal disabled

kids!

And on a final note -since this is the month of the Grinch -when it

comes to posts about schools... " Every Who down in Who-ville liked

Christmas a lot...But the Grinch, Who lived just north of Who-ville,

did NOT! "

I do not like these IEPs

I do not like them, Jeeze Louise!

We test, we check,

We plan, we meet,

But nothing every seems complete.

Would you, could you like the form?

I do not like the form I see,

Not page 1, not 2 not 3

another change,

A brand new box,

I think we all

Have lost our rocks,

Could we all meet here or there?

We cannot all fit any where.

Not in a room, Not in a hall,

there seems to be no space at all.

Could you, could you meet again?

I cannot meet again next week.

No Lunch, no prop,

Please hear me speak.

No, not at dusk. No, not at dawn.

At 4 P.M., I should be gone.

Could your hear while all speak out?

Would you write the words they spout?

I could not hear, I would not write,

This does not need to be a fight.

Sign here, date there,

Mark this, check that,

Beware the students ad-vo-cat(e)

You do not like them,

So you say

Try again! Try again!

And you may

If you will let me be,

I will try again,

You will see

Say! I almost like these IEPs

I think I'll write 6,003

And I will practice day and night

until they say

You got it right

author unknown

http://www.ldonline.org/ld_indepth/iep/iep.html

And here is a classic review of a classic and classy Dr. Seuss's

book. " One fish Two Fish Red Fish Blue Fish "

This book is without a doubt the best book I have ever read. The

vocabulary, the plot line, the whole concept is beyond a doubt a

true work of art. The way Dr. Seuss lays out the scene and then

captures you with suprises around every corner. I couldn't put the

book down. True, the vocabulary is very difficult so you might want

to keep a dictionary around to look up those words that are on a

more college based reading skill level, but the way he tosses those

wonderful discriptive adjectives around makes you want to just give

Dr. Seuss a big warm Cat in the Hat Hug! WE LOVE YOU DR.

SEUSS!!!!!!!!!!!!!!!!!!!!!

http://bn.teamprescription.com/dvd/Dr..html

(hope I at least made some of you smile that are having it really

rough right now. We are there for you -so hang in!)

=====