RE: Digest Number 165

[Guest guest]

Happy Birthday, Lissajane!! (What a great name!) and Hello, All!

It's after midnight here in the wet state of California, and I find that I

just can't seem to sleep. I've known for just over two weeks now that my

daughter Olivia (16 mos now) has been diagnosed with MDS -- and I can't seem

to get the next step taken. I've talked with agencies and with doctors, but

it seems that everyone has to " evaluate " her case to determine whether or not

she will be eligible for services. Olivia won't been seen until the

beginning of April. This is very frustrating. Olivia's pediatrician was

telling me that with a diagnosis of MDS she may not qualify for early

intervention because it's not considered " bad " enough. I still feel like I'm

in this limbo land of not knowing what to expect... But reading everyone's

stories has been so very helpful. I just think it's amazing how much our

kids have to offer us. How much we learn from them and become stronger

because of them. Thank you for sharing.

Sophia & Olivia

[Guest guest]

Sophia...

What part of CA are you in?? I'm in LA county, and I had noticed when I first

found this website that I was the only one listed in CA, so maybe I can be of

some help, although I know it may vary county to county. Have you contacted

the Regional Center yet??? They'll get the ball rolling... let me know if

you need more information on them!

Angel

[Guest guest]

Sophia -

My daughter (12 months) is falling within the normal ranges of

development (albeit on the bottom end of the curve) but *because* of the MDS

diagnosis she is eligible for services. She may end up being evaluated out

of them - but not until she is out of early intervention. (Older than 3).

We had our first PT (up to now we have had OT and special ed) - The little

stinker stood for the first time, crawled, and military crawled all for the

first time in the one hour that the PT worked with her. In the week since

she is now scooching on her bottom and military crawling all by herself -

she is still faster at rolling and will roll when she really wants

something. (the PT) and I think she was showing off. Whatever - I

am so glad she is moving! I can't believe all it took was for someone to

show me 2 or 3 tricks to help her.

Darlene - Mom to (3) and (12 months)MDS

Re: Digest Number 165

From: Oliopop@...

Happy Birthday, Lissajane!! (What a great name!) and Hello, All!

It's after midnight here in the wet state of California, and I find that I

just can't seem to sleep. I've known for just over two weeks now that my

daughter Olivia (16 mos now) has been diagnosed with MDS -- and I can't seem

to get the next step taken. I've talked with agencies and with doctors, but

it seems that everyone has to " evaluate " her case to determine whether or

not

she will be eligible for services. Olivia won't been seen until the

beginning of April. This is very frustrating. Olivia's pediatrician was

telling me that with a diagnosis of MDS she may not qualify for early

intervention because it's not considered " bad " enough. I still feel like

I'm

in this limbo land of not knowing what to expect... But reading everyone's

stories has been so very helpful. I just think it's amazing how much our

kids have to offer us. How much we learn from them and become stronger

because of them. Thank you for sharing.

Sophia & Olivia

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Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com And please don't forget to check

the message board frequently...it's a great way to meet others who are

affected by MDS, who are not on our mailing list!

http://www.insidetheweb.com/mbs.cgi/mb778401

[Guest guest]

Sophia and Olivia:

Correct me parents if I am wrong, but Downs syndrome (wither MDS or not) is

an automatic qualifer. I believe all you need is a diagnosis from the doctor

and then it us up to the a local agencies to assess the needs of the child.

These are federally funded programs and they have to serve our childen by

law.

I would find out the name of the early intervention program for your state

and contact them immediately. Good luck.

To :

May you should consider a second opinion. This situation sure sounds goofy.

Good luck to you too!

[Guest guest]

The only service I've heard could be denied eventually because of MDS is

Social Security Income. They could base it on the degree of severity. Any

of you out there that don't already know you (well, not you, your child =) )

could qualify for SSI, and are having a hard time making ends meet, you

should contact them!!

Also Regional Center, which I think may be a national organization, (anyone

know??) offers many services, including things like diapers or pull ups,

respite care (they'll pay for you to hire a babysitter for so many hours per

month to get a break, anything from grocery shopping alone to a date with

your honey!) or all kinds of OT services, in my area theres a service for

disabled children to ride horses at a local ranch... I hear the kids LOVE it!

Hope this helps anyone who doesnt already know about these services. =)

Angel

[Guest guest]

In a message dated 3/8/00 5:56:35 PM Eastern Standard Time,

LDSAngel77@... writes:

<< he only service I've heard could be denied eventually because of MDS is

Social Security Income. They could base it on the degree of severity. >>

I don't think just having the diagnosis of mosaic down syndrome is a

guarantee to receiving services. For babies in early intervention, having a

diagnosis of mds will probably guarantee services. I think its more important

for babies to get these services just because they are " at risk " for

developing delays.

My daughter did qualify right off the bat, though she was less than a month

old when she was evaluated. Through the years there have been professionals

at some of my committee meetings that felt really did not qualify

for services. Once she left pre-school and entered kindergarten in my school

district the fight has been a hard one. All her services were dropped except

for speech which we are holding on to by a thread. I guess in some states,

and in some school districts they have different standards that they use to

determine if a child qualifies. My district looks very strongly at

standardized test scores and if a child does not have a certain percentage of

delay, they don't qualify. I must say having the mds diagnosis has helped

to get services so far, but she will not be getting them much

longer without my having a huge fight with my school district.

I guess the point of all this is that it is not a guarantee. It should be,

but especially as the kids get older, if they are functioning at a high

level, it may not guarantee that they receive services.

ann (Mom to mds, 6 yrs old and 10 yrs old)

[Guest guest]

Sophia,

Hello! I find it curious that your early intervention would consider

not providing you with services, I believe they go by diagnosis, not only

evaluating your child. In our case, they did not even know about the

" mosaic " part, they only knew my daughter had Down Syndrome, and most of the

therapists had never even heard of MDS. They based her need of the services

by the diagnosis of Down Syndrome. Just thought I'd let you know how we got

our services. Have a great day!

Nathalie, mommy to (5 1/2), Naomi (almost 3, mds), and Anne (almost

1)

[Guest guest]

>

>Reply-To: MosaicDSonelist

>To: <MosaicDSonelist>

>Subject: Re: Digest Number 165

>Date: Thu, 9 Mar 2000 21:23:57 -0500

>

>Sophia,

> Hello! I find it curious that your early intervention would consider

>not providing you with services, I believe they go by diagnosis, not only

>evaluating your child. In our case, they did not even know about the

> " mosaic " part, they only knew my daughter had Down Syndrome, and most of

>the

>therapists had never even heard of MDS. They based her need of the

>services

>by the diagnosis of Down Syndrome. Just thought I'd let you know how we

>got

>our services. Have a great day!

>

>Nathalie, mommy to (5 1/2), Naomi (almost 3, mds), and Anne

>(almost

>1)

>

>Same here. As a general rule, I simply tell people that Maggie has Downs

>Syndrome instead of trying to explain the whole MDS dx. Thus far, Maggie

>has always been eligible for EI based on her diagnosis. Of course, when she

>transitioned into the preschool program, she had to have a lot of

>assessments, all of them standardized, before we held her IEP meeting to

>determine which services and how much of them she needed. I know that in

>N.C., at least, Birth through 3 services are for any child who is at risk

>for delays (based on certain criteria) whether or not they have a medical

>dx or not. Anyone can find out this information by contacting the EI

>program in their county/state. But, I'm pretty sure that all of this falls

>under the IDEA '97 and should be the same anywhere. Doctors and

>pediatricians frequently don't know or even care to know (I'm generalizing

>here.)about EI services. As a parent, I've learned through personal

>experience and from listening to others that I have to do a certain amount

>of research myself and be assertive when dealing with any professional or

>service agency to insure that my child and our family is getting what is

>needed, available and/or legally mandated as opposed to relying on what I

>am told from any one individual professional. Sorry this was so long

>winded.

Carla Duffy

MO Maggie 3 1/2 (mds)

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