RE: venting/ FInancial Resources- READ THIS

[Guest guest]

I too have been criticized by my family for medical or

financial assistance we have received. Yet, these

family members are not there for me when I have to

pick up my son from school and start work an hour

later because there is no one else to do it for me.

When he is in the hospital I do not dare leave him

alone. I was not eligible for family medical leave at

the beginning of this year since I did not have enough

hours worked. When I was sick from pneumonia (and my

husband ended up with a bad sinus infection and was

sick too), I was not getting more than 2-3 hrs of

sleep in a row since Lucas was also sick, my family

was not there either. I did have a couple of family

members watch my older two boys when Lucas was

inpatient but that was one day by two different

members. We recently moved and none of my immediate

family was there to help us. It would have been nice

for some help with watching Lucas. The whole reason

why we moved was to be in a ranch house because Lucas

was not doing steps. Hang in there. Only another

family with a special needs child can understand what

this means to them.

Loriann-mom to and 12.5 yr old twins and

Lucas 9 yrs old with mito, FOD, etc.

--- Embroidery Journal

wrote:

> On the subject of middle income families utilizing

> state/provided/available

> services and financial support.

>

>

>

> I was hesitant at first too, before I had a

> diagnosis for Zoe. After, I

> read something ( somewhere) that I wanted to share..

>

>

>

> It is a matter of resources. With our children we do

> not know what lies

> around the corner. ( Hailee and LeAnn- we are

> thinking and praying for

> you!!) There is always a real fear of the

> unexpected. There is the reality

> that illness, seizures and strokes could change our

> children at anytime, and

> forever.It is a matter of utilizing those resources

> now, because of the

> medical uncertainties. Would any of us hesitate to

> mortgage the house- if

> there was a treatment available, a life saving

> surgery ? No- and you know

> what, there would be no state aid for many of the

> new procedures/

> experimental therapies ( like supplements etc) But

> back to topic- there are

> many unknown expenses. Medical unknowns and so many

> things that are not

> covered. ( My visit to the nuero opthomologist- she

> takes NO insurance

> plans- $ 450 for a three hour consult) There is a

> shortage of doctors

> experienced with this disease, so we travel across

> the country at our own

> expense (often) to seek medical care..

>

>

>

> It is a matter of resources, if we can save $70

> today- that $ 70 put away

> in savings.could be $ 500 in years to come when some

> of our children may

> require more constant care. It isnt wether or not we

> can afford the $ 70- or

> $ 100, it is about assisting with the lifelong

> financial burden of raising a

> special needs, medically fragile child. If many of

> us were to sit down and

> estimate the care our child may require in 10 years,

> 20 years, 30 years, We

> could be shocked with the financial reality of the

> expense. We have learned

> to live in the moment, but any financial planner

> will tell you that is

> unrealistic.

>

>

>

> Another interesting note- I read at the same time

> and remember well, Some

> parents save for their childs college education,

> well with a special needs

> child what you SPEND now could determine or

> influence their intellectual

> outcome. College may or may not be a reality for our

> kids, but what we do

> with our resources for the first 10 years as their

> brains continue to grow,

> learn and develop is the most crucial.

>

>

>

> End of my soapbox debut. Hope you all have a nice

> weekend. Dare I say it is

> supposed to be 70 degrees in AZ this weekend???

>

>

>

> Suzanne , mom to Zoe, almost 3, mito complex 1,

> brain involvement, moderate

> hypoplasia of the cerebellum, ( MMR diagnosis I

> choose to disbelieve) ..

> Significant speech delay, low tone, and so on.

> Healthy and out of the

> hospital for 82 days and counting! YIPPEEEEEE! Mom

> to Olivia, 4.5 and full

> of energy ( enough to share with her sister!!!)

>

>

>

>

>

> From: The Kovalcik's

>

> Sent: Friday, March 18, 2005 12:28 PM

> To: Mito

> Subject: Re: venting

>

>

>

> Hi ,

>

>

>

> Yes, we have dealt with it, too. We also do well

> financially and are looked

> at (and I know talked about) by both people and

> family when we use " free "

> state/county/government services. It is a difficult

> situation, however, we

> all pay taxes and we are all eligible to use the

> services. Just because we

> may be able to pay for things out of pocket doesn't

> mean we should have to.

> I really do not think this is a conceited way of

> looking at it...it is just

> reality.

>

>

>

> If we do pay out of pocket (which we actually do

> right now for Ellie's PT

> appt ($70/hour at 1 hr/week)), it adds up and then

> people say " oh my gosh,

> doesn't insurance cover that? " Well, yes, I answer,

> they do, if we take her

> to a facility to have it done but when we do that

> she is exposed to all of

> the germs as it is located in the same building as

> the Urgent Care and she

> always comes home with something (run-on, I know).

> So, we choose to keep

> her with her current PT and she comes to our home.

> So we pay out of pocket.

> So if we use services that are paid for, we're

> criticized. If we don't,

> we're questioned and " felt sorry for " because we

> have to pay out of pocket.

>

>

>

> Anyway, I don't know where I am going with

> this...it's just that I feel we

> are all eligible for any services the government may

> have available.

> Someone else mentioned the handicap parking tag and

> dirty looks....we get

> that ALL the time.

>

>

>

> Oh well....I could go on and on...I know where

> you're coming from .

> Good luck with the stroller...Mito kids need to

> conserve their energy so

> much...if friends and family don't understand, it is

> their problem. Fight

> for what Zach needs!

>

>

>

> Hope everyone is having a good Friday...

>

>

>

> KK

>

>

>

> venting

>

>

>

> I just had a meeting w/ zachs medicaid waiver

> program coordinator. I have

> been talking about school and a stroller we're

> trying to get. The stroller

> from the company is 2000 dollars was 1500 and they

> raised it w/o changing on

> anything. We're building a new house a nice house

> and i'm getting crap from

> people because medicaid waiver is fighting for this

> stroller. One person who

> is on medicare doesn't understand medicaid waiver

> does not take away from

> them and gets mad because we are asking for these

> things when we go on

> vacation and i can understand that but this program

> is designed for ppl like

>

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