Re: Re: To Michele, mom to Aubrie

[Guest guest]

Hari-

I am not sure how young hearing aids can be fitted -- I don't know that there is

an early limit. Others on the list can let us know if there is a time that is

too soon.

All of Aubrie's services were provided by the state early intervention program.

At age 10 weeks, she had an evaluation by specialists in every area. We held

the eval at the School for the Deaf because it made sense for us, but the place

and type of eval is specific for each child. After that, we had a specialist

from the School for the Deaf, one from the School for the Visually Impaired, one

from our state deafblind project, an OT, PT, and speech therapist -- all

working with her on a regular basis. I chose to use our insurance to get OT,

PT, and speech from the children's hospital. It is in a neighboring state so we

didn't get coverage for that through early intervention, but our insurance did

pay. When we were over some major hurdles and I was more comfortable with

things, we switched to local therapists providing services in our home.

We go to St Louis Children's Hospital -- a 2+ hour drive one way. We were going

for frequent doctor visits anyway, so we kept up with therapy there for nearly a

year. We made that trip at least twice a week. It was tough to say the least!

The specialists from the School for the Deaf and the state deafblind project

have proven to be some of our best resources and advocates. I still feel that I

can call on them when I need support or advice. The same deafblind specialist

is still working with Aubrie, attending school meetings, and providing input for

her classroom teacher.

All of the services Mihir needs will be available to you from Early Start. They

should be at no cost or minimal cost (each state is different). The first step

is to make the initial contact, get him evaluated, learn your rights, and get

the ball rolling. In IL we have a service coordinator who oversees everything.

That person should be a resource for you in knowing if you've found all of the

available and appropriate resources. That person should also keep up with

things and assure that things go according to the plan. There should also be a

Parent Liason who would provide support to you. I'm not sure how much of the

early intervention system is the same on a national level and how much differs

by state. We will need some of the folks on the list from CA to speak up here

and help you out with the details.

At your stage in the game, I was frustrated because I felt like I had to be a

detective to find the services available to us. I didn't have time or energy to

work through all of the bureacracy. Once you get things rolling and get hooked

up with some good people in the system, it should run fairly smoothly. Finding

that one angel who will hold your hand through the process is the trick. We

were fortunate to have many angels in our lives.

Michele W

Aubrie's mom

To Michele, mom to Aubrie

>

>

> Dear Michele,

> Nice reply and many things to note. Eagerly waiting to see the

light

> at the end of the tunnel. Though my mom wants to take care of

him, I

> even dropped my idea of working because I don't want to leave

Mihir

> with my mom/ daycare with his conditions. (I didn't tell my mom

abt

> Mihir's condition as she was in her early stage of Parkinson's

L --

> didn't want to give a burden)

>

> Just want to ask u one thing-did ur daughter respond to ANY sort

of

> sound when she is small-say like mihir is now-3 months old?

Because

> when I talk to Mihir, he smiles back at me, he does this all the

> time, also when my dad called him from his back when he is on

the

> bed lying, he did look up, like how we respond. I received some

> brochures from California state hearing center yesterday; I have

to

> go thru them. Will certainly make sure Mihir gets his aids soon.

>

> Mihir is 7lb when he was born, I tried to nurse, but did not

work

> out, so I am pumping and giving the bottle. Initially there was

a

> problem with bottle nipple, he did not gain enough weight, once

we

> changed the nipple it worked, and he drank abt 2oz of milk in

20min

> or so. From the past 2 weeks he is so naughty taking only abt

15ozs

> a day, taking 1oz in 5-10min, chewing the nipple and doing all

nasty

> things, plays for a while-finally it takes abt 45 min to feed 2

oz.

> I am so tired of this and went for weight check up and his DOC

said

> he gained little but not as expected L some how I am

continuing .--

> today he called and said he is referring him to a feeding

specialist-

> saying there MIGHT be a palate problem.

>

> I did order CHARGE manual & am waiting for it.

>

> Hari,

> Mihir's mom

>

>

>

> Membership of this email support groups does not constitute

membership in the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@c... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

2005. Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada,

you may contact CHARGE Syndrome Canada at 1- (families),

visit www.chargesyndrome.ca, or email info@c... Thank you!

>

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

The hearing tests through early intervention would be the same as what you had

done -- just paid for by a different funding source. However, Early Start

should be doing a thorough evaluation of Mihir to determine his needs and set up

a program for him. They should be the ones providing your contact to the state

sources for hearing & vision support, OT, PT, Speech, etc. I would think the

procedure would be very similar in CA as here in IL. You begin with your

referral. Continue to call them until they return your call. Be diligent and

relentless. They may be understaffed, but you need their help now.

Once the referral is made, they should set up some kind of intake visit. This

would be to get the initial information on Mihir and get your family into " the

system " . Then there should be an evaluation. In our case, they brought all of

the specialists in every area to one setting so that they could all see Aubrie

at once -- rather than taking her to 10 different people for 10 different

appointments. Either way, Mihir needs an assessment by OT, PT, speech,

developmental specialists, etc. After the evaluations, the team (which includes

you) will determine what interventions/therapies are required, how often, by

whom, in what setting, etc and a plan will be developed. Then all of it will

begin to happen.

There should be a parent handbook available that would outline the procedures in

your state and your rights as a parent. There should be timeframes in place for

how long each part of the procedure will take. Make sure that everything

happens in a timely manner. If things become delayed, be diligent and

persistent so that Mihir gets what he needs when he needs it. If they are

understaffed, don't accept that as your problem.

My goodness, I didn't intend to jump up on a soapbox. It is difficult to

navigate all of the state agencies and procedures. But you will figure it all

out once you get into it.

Not knowing Mihir, it's hard to say what therapies will be appropriate for him.

It is never too young to start with any of them, in my opinion. Aubrie began

PT, OT, and speech in the hospital as a newborn.

Michele W

To Michele, mom to Aubrie

> >

> >

> > Dear Michele,

> > Nice reply and many things to note. Eagerly waiting to see

the

> light

> > at the end of the tunnel. Though my mom wants to take care

of

> him, I

> > even dropped my idea of working because I don't want to

leave

> Mihir

> > with my mom/ daycare with his conditions. (I didn't tell my

mom

> abt

> > Mihir's condition as she was in her early stage of

Parkinson's

> L --

> > didn't want to give a burden)

> >

> > Just want to ask u one thing-did ur daughter respond to ANY

sort

> of

> > sound when she is small-say like mihir is now-3 months old?

> Because

> > when I talk to Mihir, he smiles back at me, he does this all

the

> > time, also when my dad called him from his back when he is

on

> the

> > bed lying, he did look up, like how we respond. I received

some

> > brochures from California state hearing center yesterday; I

have

> to

> > go thru them. Will certainly make sure Mihir gets his aids

soon.

> >

> > Mihir is 7lb when he was born, I tried to nurse, but did not

> work

> > out, so I am pumping and giving the bottle. Initially there

was

> a

> > problem with bottle nipple, he did not gain enough weight,

once

> we

> > changed the nipple it worked, and he drank abt 2oz of milk

in

> 20min

> > or so. From the past 2 weeks he is so naughty taking only

abt

> 15ozs

> > a day, taking 1oz in 5-10min, chewing the nipple and doing

all

> nasty

> > things, plays for a while-finally it takes abt 45 min to

feed 2

> oz.

> > I am so tired of this and went for weight check up and his

DOC

> said

> > he gained little but not as expected L some how I am

> continuing .--

> > today he called and said he is referring him to a feeding

> specialist-

> > saying there MIGHT be a palate problem.

> >

> > I did order CHARGE manual & am waiting for it.

> >

> > Hari,

> > Mihir's mom

> >

> >

> >

> > Membership of this email support groups does not constitute

> membership in the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter)

> > please contact marion@c... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 7th International

> > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-

24,

> 2005. Information will be available at our website

> > www.chargesyndrome.org or by calling 1-. In

Canada,

> you may contact CHARGE Syndrome Canada at 1-

(families),

> visit www.chargesyndrome.ca, or email info@c... Thank you!

> >

> >

> >

> >

> > ---------------------------------------------------------------

----

> -----------

> >