RE: Re: TRANSITIONING: From Babies Cant Wait to School System - Help Moms!

August 7, 2008

,

Thanks I agree with much of what you say in the posting. One thing I want to

clarify is that Charlie is turning 3. So, what is the norm for singing at 3?

I am having further evaulation out of pocket, of course, done by 's

Ladder here in Roswell. Amy O'Dell will be reviewing him indepth as you

suggest in your email below for " missing " parts of therapy. She was noted in

Fortune Magazine in May 2008. We are greatful to have such talent right

around the corner, and have been anxiously waiting since May to have her

evaulation on Charlie.

I am going to do my best in the meantime with the big guns and just see what

I can get service wise. Otherwise, We will have to use insurance and private

funds to keep up. We have come too far to let some school system with low

standars remain an obstacle longer that it should.

Totally agree with enjoying my child and focusing on some fun. We have 3

vacations planned here for the end of the year.

Thanks to these boards, docs, NDs, DAN, thearpist and a lot of love and

support I feel like we are constantly moving toward healing for Charlie. It

has been an AMAZING year of progress.

Colleen

Mother of Charlie

Almost 3 - (Last year 6 approx words after becoming non verbal after

chickpox, MMR and FLU - One year later, testing at higher than normal levels

in ST)

[ ] Re: TRANSITIONING: From Babies Cant Wait to

School System - Help Moms!

Colleen I first want to say congratulations because it's obvious that

your child is doing amazing! So that's the incredible news! As far

as advocacy in the school as you know you are part of the IEP team

but that probably will not be enough for you to advocate for what is

appropriate in this situation. I could be wrong but it's my

understanding that the goal for the services is to help get your

child up to speed in all ways related to being in the mainstream

classroom. So if I were you I'm not sure if I'd focus as much on the

not singing yet at 2 as that probably isn't high on the priority list for

being able to make it in a classroom. Again I could be wrong on that-

and in no way am I saying that I don't believe singing is important

because as you know from one of my previous posts today I myself find

it very important and I also just posted about the importance of

music therapy.

What I advice is that you need some bigger guns to help you and in

that I mean private evaluations with experts in speech and neurology

who can point out the lingering issues (if any) that will impair your

son's academic future if not addressed early. An expert will be able

to notice the lingering signs of apraxia that a novice would not be

able to pick up. As we know in this group for example an apraxic

child on fish oil no longer presents with the classic signs of

apraxia but that doesn't mean they are no longer apraxic. In fact we

know from the medical doctors who've posted to this group that

children with rare genetic disorders drop some of the symptoms of the

disorder on oils -but again that doesn't mean they are cured. So you are

correct in being on the lookout of making sure that he's where he

needs to be right now before you sign off on all therapies.

As always you are looking to seek appropriate therapy and placement

in the least restrictive environment but right now due to progress

you also need to make sure that your child is qualified which means

that he falls a certain percentage below the norm. There is a

chance that the experts will agree with the school and say that even

though there are still some minor issues they are not at this point

enough to qualify for continuing services. In that case you need to

keep your eyes open to make sure that the issues don't compound. If

they do then at that point you seek services again and cross that

road when you come to it. But if they do say it's appropriate for

your child to continue to receive services right now for the issues

they point out then you want those evaluations short and annual

goals in writing in the IEP.

On a final note if you double check on the outside and hear the same

as you are hearing from the school -relax and enjoy letting yourself

and your child be a bit more " normal " right now. You have at least

2 years until kindergarten. Spend that extra money on karate and

swimming or other classes or Disney (!) and that extra time at the

beach or zoo or baking cookies together you think he'd enjoy and have

fun. Life is much more than just therapy -but it's thanks and due to

appropriate therapy (and let's not forget fish oils!) that out kids

get to enjoy it like everyone else!

=====

August 7, 2008

,

Thanks! This is very helpful stuff.

Colleen

[ ] Re: TRANSITIONING: From Babies Cant Wait to

School System - Help Moms!

Colleen you may want to read the following paper I found at

http://upd.sagepub. <http://upd.sagepub.com/cgi/content/refs/26/1/26>

com/cgi/content/refs/26/1/26 According to this it

may not be unusual for a child not to be singing by 2. I know your

child is going to be 3 but it's all a range and between the age of 2

and 3 " approximately half the children can sing the words, rhythm,

and pitch contour of a whole song accurately " as it says below.

Singing is such a huge part of preschool programs that Tanner was in

that honestly I don't recall Tanner singing anything prior to that

age even though we always listened to music and had speech therapy

music tapes. Here on the Talking Page we have a recording of Tanner

singing Twinkle Twinkle Little Star at 4 years one month old -so

according to the following chart he's right on target in that area!

http://www.debtsmar <http://www.debtsmart.net/talk/tanner.html>

t.net/talk/tanner.html

Below is a cut from the PDF file above. I can copy and paste more if

you or anyone needs it:

Musical Characteristics of Preschool-Age Students: A Review of

Literature

A. Miyamoto

General music specialist, Kapalama Elementary & Teleschool Branch,

Hawaii Department of Education, Honolulu, HI.

E-mail: miyamotok001@ <mailto:miyamotok001%40hawaii.rr.com> hawaii.rr.com

Table 2. Summary of Singing Ability in the Preschool Child

Category Description

De v e lopm e n t

Birth A child is in the music-babble stage from birth to the onset of

a sense of tonality (Gordon, 1984). Singing bears no resemblance to

accurate rhythm, pitch, melodic direction or words (Moog, 1976).

4-6 Months The infant is able to respond to the mother's singing and

match the pitch of single tones (Michel, 1973).

6-12 Months This is the period of the onset of the first audible

intervals during vocalization (Michel, 1973).

12-18 Months The child uses the vocal glissando over several pitches

(son, McKernon, & Gardner, 1981).

18 Months Intentional production of discrete pitches is possible

(son, McKernon, & Gardner, 1981).

1-2 Years Songs assume a characteristic melodic contour. Melodies are

based upon diatonic intervals (Michel, 1973). Children can sing the

words, and can match the rhythm and approximate pitch of a singing

model (Moog, 1976).

2-3 Years Approximately half the children can sing the words, rhythm,

and pitch contour of a whole song accurately (Moog, 1976). A large

percentage are modulating singers (Flowers & Dunne-Sousa, 1990).

4-5 Years Singing is more accurate, tonality is sometimes unstable

through phrases, and spontaneous singing becomes less frequent.

Approximately half of this population is able to sing several verses

correctly with minimal mistakes (Moog, 1976). Spontaneous singing

incorporates major and minor tonalities and sung intervals are based

on the triad, the scale with a range up to a sixth, and an occasional

ending cadence (Michel, 1973). A large percentage are modulating

singers (Flowers & Dunne-Sousa, 1990).

~~~~~~~~~~~ download here

http://upd.sagepub. <http://upd.sagepub.com/cgi/content/refs/26/1/26>

com/cgi/content/refs/26/1/26

=====

August 14, 2008

Colleen,

I was in this same situation just a few months ago. My son did very well on

their tests, and he did not qualify based on his scores. Here's what I

did.....hope you can get something helpful from it.

I had a diagnosis of oral/verbal apraxia from a developmental peditrician. I

mentioned that I'd been supplementing with fish oils and about how that changed

his apraxia symptoms. I also mentioned how their test did not assess

" playground language " .....that my son had difficulty producing speech amongst

peers, and how there was a huge break down in articulation when he spoke longer

sentences. The oral motor issues came up several times, too..... In the end,

it was pretty clear to the team that I was not going to sign an IEP that did not

adequately meet my son's needs, and that I'd hire an advocate if needed.

You may want to join a local " special needs " group. They can give you

lots of support and ideas when dealing with the IEP team.

I also enrolled Eli in services at the local university. He receives two hours

of speech per week at the college, and one hour of speech and one hour of OT

through the district.....through their vendors (not " on site " at their

preschool). Eli is also not mandated to attend their preschool -- a big relief

for me!! The university services are stellar, too! Each session is observed by

a fully liscensed SLP instructor, and mine certainly knows her stuff. She

zeroed in on Eli's oral motor issues immediately.....something that I'd been

screaming about for months.....

Hope this helps

@...: colleen.somerville@...:

Thu, 7 Aug 2008 17:21:46 -0500Subject: RE: [ ] Re:

TRANSITIONING: From Babies Cant Wait to School System - Help Moms!

> > > > >> >

Okay, so it is always best to ask the experts. And in this case it > is > > you

moms and dads. > > > > Here is the deal. Charlie is turing 3. Babies Cant Wait

is done for > > him in about 3 weeks and the next step would be going to the

school > > system for services. > > > > After our evaulation today with the

School System, Charlie tested > out > > of the School System's program for

Speech. My concern here is that > I > > believe they should be providing

oral/motor speech therapy in his > > mainstream classroom at his mainstream

daycare. The school system > is > > going to evaulate him in his mainstream

daycare. They are aware of > > the fact that he does not sing and when he

strings long sentences > > together, the apraxia does show as he drops the

beginning of words > on > > longer sentences. To me, this should qualify for

some sort of > > service. > > > > 1. Should not singing at 3 qualify him for

services?> > 2. Shouldn't qualify for services because when he strings long > >

sentences together, the apraxia does show as he drops the beginning > > of words

on longer sentences. > > > > How can a school system not provide someone

services to someone in > > this case? > > > > I do realize that I am going to

have to use some insurance for this > > but they should pay for something in

this case. > > > > What have been your outcomes? I am in Atlanta, GA> > > >

Thanks,> > Colleen > > > > Mother of Charlie almost 3> >> > > > > > > >

August 14, 2008

Colleen,

Welcome to the 'never-ending' battle. Fighting for services and needs within

the school system wasted years of my time and energy when I could have been

recovering my child. It is exhausting.

I wrote letters and lots of them! That is usually how I got my way, I put it in

writing and I voiced strong arguments with regards to my sons' condition, his

abilities to participate effectively and I also would clearly demonstrate that

dypraxic children DO pass most testing which is why they face the highest risk

for drop out in later years. Because our children do not fit into the nice,

neat, tidy boxes of delay.... they get tossed from services very early. There

is generally a very high discrepency between verbal skills and non-verbal skills

on IQ testing; this often will bring a child to an 'average' score so it is

important to look at the sub-components of testing to reveal or outline weak

areas to the school.

I also like to send all of my correspondence to one single person rather then a

board. I find out who has the power to make decisions and I target that single

person and make her/him accountable for every letter I send. I create

'ownership' and accountability and thus ensure that my child is looked after and

does not get lost in the shuffle. There is definate power in writing and their

is definate power in writing to a specific person. They then MUST take

responsiblity for their actions (or lack therof) with regards to your file. If

they do nothing and ignore you; you have grounds to nail them to a wall. Note

that I got our neurologist to write a letter outlining Mark's need for

indefinate Occupational therapy and I sent a copy of that letter to everyone!

If they can trump the qualifications of a neurologist.... well, then maybe they

can be responsible for my son not getting necessary services. This worked at

first but only held so much weight in the end. The school system is on

perpetual ignore when you are trying to get services. Oh.... and forget about

getting an aide unless a more affected child is in the class who already needs

one..... then the system might let you share but it has been tough go trying to

get that type of assistance and I gave up on that pretty early in the game.

In my letters for funding (yes I would actually write the finance department at

the board of Education.... being an accountant, I know how to speak that

language and I know where the hold-up is.... with the guy signing the cheque!);

I would reveal statistics that demonstrated that children who didn't get

adequate treatment and remediation were high risk for delinquency in later

years. It is amazing how many people respond to that little guilt-trip! Nobody

wants to think of their refusal of services creating a criminal but indeed, it

does. My spouse is a criminal lawyer and his belief that the juvie halls are

littered with kids with LD's and mild NDDs. Years ago, I actually found

statistics on this and attatched them to my letters to the school board! These

are the children that get sacrificed in our world. Well, NOT MY KID!!!

I fought for so many years...... and I literally had to fight each and every

single year for help...... it is so hard on the spirit, I must warn you.

Finally, I just stopped fighting and did NACD instead. Others homeschool

instead but I just wasn't up to that.

You really must refuse to take no for an answer. Dealing with the school system

is truly Battle-Axe Training 101; the squeakiest wheel definately gets all of

the grease! Be nice and be considerate (since these people do have charge of

our beloved Charlie each day) but be persistant. Refuse to go away. I once

called the same Administrator each and every single week until she got utterly

tired of me calling and 'found' me services! I was nice; I was cheerful; I was

kind; I just didn't go away like they wanted me to!

I learned that you must call, write, provide notes and offer assistance whenever

possible. I helped out at the school; I volunteered in the classroom; I taught

paired reading with kids who needed help; I made myself a constant 'presence'

until I got what I wanted!

......and even then as Mark aged..... that stopped working. After 2nd grade, he

got no further OT assistance and after 6th grade, he aged out of system speech

services. Now, we are in Canada but I hear similiar tales in the US and in the

UK. This seems to be a universal problem with dyspraxic children; access to

services is a tough sell to the system.

Personally speaking..... (sorry teachers out there) I find IEP's to be a joke.

In our experience, they were rarely done or completed. I found in the long term

that it was the actual teacher herself that mattered. Some teachers are really

special and are willing to take the time and energy to 'get' our children. I

soon discovered that the best course was to become a good friend of the teacher

and to really establish great communication with her. I would share stories and

tid-bits to help her understand what Mark could do and what he couldn't. I

would buy extra materials to make her job easier; whatever she wanted to try

with my kid.... all that teacher had to do was mention it and I was off to the

store or ordering online. Special scissors, special seating, slanted boards,

special writing paper, special folders to correspond with the teacher and even

special pencil grips. I once went through about 7 different styled pencil grips

working with a teacher in our attempts to help Mark!

I would email and check in to ask what I could do at home to help. This was

wonderfully received by every single teacher I have tried it with. Thus, it

ended up to be a fabulous method in the long term. I actually still keep in

contact with Mark's teacher from Special Education and I send her articles and

materials of different research that I think she would find interesting. I

actually taught her how to do digit spans and she once did them with Mark's

entire classroom..... I think it was a big eye-opener for her! Mark had her for

both grades 5 and 6 so once I had her trained in dyspraxia.... it was a breeze.

I loved this teacher and really, really respect how she truly cares for our

kids. She was amazed at Mark's progress with NACD and still follows him today.

Mark has had some 'evil' witches too! Well, that is not fair..... more like

'old-school' teachers who thought that his problems could be resolved with some

old-fashioned discipline and hard work. Nothing wrong with the kid that a little

soul-bruising critism and humiliation couldn't fix! Fabulous..... Oh, btw, I

have found that some of the worst bullies in the school system are sometimes

teachers so be aware of that. If you get a bad vibe from a teacher, don't

hesitate to switch it up. I finally got to know the teachers at my sons school

and would actually request certain ones that I thought would be 'good' for Mark

and who would respond to him in a positive manner. I would discretely do this

through either the principal or the vice-principal. Sometimes my requests were

granted and sometimes for adminstrative reasons, they were not.

He had a teacher in grade 3 who made him stay after school each and every day to

reorganize his desk. She also forced us to 're-write' all of his school work

nightly claiming that it would 'fix' his hand-writing issues. When this didn't

work, she was the first person to begin lobbying for him to leave mainstream

education and go to special education. In the end.... for Mark, special

education proved to be a nice break from bullying and 'crap' he was experiencing

in mainstream. When we went back to mainstream in grade 7, he was ready to be

there. He didn't have to 'fake' fitting in; he DID fit in. It was nice to have

this experience.

So..... this is my personal 'hell' that I went through in the school system. If

it gets too rocky, understand that their 'job' is to deny you as many services

as possible. They make you sweat for every extra dime that gets put into your

child....

It sucks, imo....

Janice

RE:

[ ] Re: TRANSITIONING: From Babies Cant Wait to School System

- Help Moms!

> > > > >> > Okay, so it is always

best to ask the experts. And in this case it > is > > you moms and dads. > > > >

Here is the deal. Charlie is turing 3. Babies Cant Wait is done for > > him in

about 3 weeks and the next step would be going to the school > > system for

services. > > > > After our evaulation today with the School System, Charlie

tested > out > > of the School System's program for Speech. My concern here is

that > I > > believe they should be providing oral/motor speech therapy in his >

> mainstream classroom at his mainstream daycare. The school system > is > >

going to evaulate him in his mainstream daycare. They are aware of > > the fact

that he does not s ing and when he strings long sentences > > together, the

apraxia does show as he drops the beginning of words > on > > longer sentences.

To me, this should qualify for some sort of > > service. > > > > 1. Should not

singing at 3 qualify him for services?> > 2. Shouldn't qualify for services

because when he strings long > > sentences together, the apraxia does show as he

drops the beginning > > of words on longer sentences. > > > > How can a school

system not provide someone services to someone in > > this case? > > > > I do

realize that I am going to have to use some insurance for this > > but they

should pay for something in this case. > > > > What have been your outcomes? I

am in Atlanta, GA> > > > Thanks,> > Colleen > > > > Mother of Charlie almost 3>

>> > > > > > > > [Non-text portions of this message have been rem

oved]>

August 14, 2008

,

Thanks! I have hired an advocate to come along with me and so is my babies

cant wait case worker. I feel good about this. There are a few things I feel

like doing, and I am crazy enough to do them if they are not in my corner in

the end. They can take their crappy 1/2 group st and shove it, since that is

what they are offering at IEP, Iknow it:

But I was talking to and she mentioned the other book that she is

working on and to tell them she is looking for stories, good and bad, so I

am going to tell them that I am submitting the outcome of my story to them.

At this point, I have nothing to loose! I may mention this at the end of the

meeting. Also thinking of an exersise to do with them. After all this is MY

meeting. Thinking of having the put tape over their mouth and having them

deliver me the answer on why my Apraxic son does not need individual therapy

with their mouths taped shut! They need to stand in his shoes for a moment.

Then I was also thinking of purchasing them all the Late Talker Book and at

the end gifting them with a copy. And telling them ignorance is when you

don't know. Stupid is when you know and do nothing about it. After all,

being obnoxious has gotten me pretty far in this case.

We moms must stick together!

Colleen

RE: [ ] Re: TRANSITIONING:

From Babies Cant Wait to School System - Help Moms!

> > > > >> > Okay, so it is

always best to ask the experts. And in this case it > is > > you moms and

dads. > > > > Here is the deal. Charlie is turing 3. Babies Cant Wait is

done for > > him in about 3 weeks and the next step would be going to the