Showing posts with label special needs children. Show all posts
Showing posts with label special needs children. Show all posts

Wednesday, June 3, 2009

It's almost time for CAMP WONDER!!





Adam and Noah are SOOOO EXCITED because its ALMOST time for Camp Wonder!! Only 18 more days til they go!! We went and bought some of the the stuff they need yesterday at dollar store and Big Lots like chap stick, containers for shampoo/body wash, deodorant etc. I still need to hit the thrift stores and find Adam some turtleneck shirts since that's ALL he will wear and he only has ONE!! lol I don't think the counselors will appreciate him wearing the same shirt all week!! Right guys?

Camp Wonder is an AWESOME camp for kids with fatal skin diseases. A place for them to go and have fun and do things other kids can do without being teased, stared at or critized. They go to the resevior, swimming, rockwall climbing, rope course, baseball, at night they have casino nights, dances, pirate night, campfires, and LOTSSSSSSSS MORE!! The camp is free to the campers and their families because of all the expenses the families put out on medical bills and such. The camp is run by donors who send in donations and sponsor kids and volunteers.There are nurses and doctors there all week to help the campers along with lots of volunteers who are counselors to make sure the kids have LOTSSSSSSS of FUN and MORE FUN!! Their website is at www.csdf.org or you can go to this site and click on the video links on the right and SEE the fun the kids have http://csdf.org/support-csdf/camp-wonder-video.html. You will see my youngest (Noah) in A LOT of these videos. He is my lil red head.He is known as the "Camp Flirt" lol. I saw Adam in a few. Noah's friend Emilio is in them also. HI Emilio!!! Check out the video and see what the kids have to say about Camp Wonder!! I know the day we leave Camp Wonder, my boys are COUNTING the days til next yrs camp!!

If you know of any kids from 7 yrs and up that have a skin disease then have them contact the Childrens Skin Disease Foundation www.csdf.org and ask them about Camp Wonder. Tell Gina Marie (Adam and Noah's Mom) sent you. :o) Also if you would like to help out the kids that go to Camp Wonder, you can contact the foundation and ask how you can help. They can use all the help you can give, financially mostly. Let's help give these kids some fun this summer!!

Wednesday, May 13, 2009

Disability Rights Action Alert for May 13 National Call Day

Disability rights groups have called a National Call-In Day for tomorrow, May 13. It's in support of the Senate Finance Committee's report on health care reform, released only yesterday.

This report offers major support for our children with disabilities. It expands the medicaid waiver programs, designed to provide the supports needed to keep our kids home with their families, eliminates the waiver program waiting lists that plague many states, eases the medical requirements for entry into the medicaid waiver programs, and increases the FMAP (Federal matching funds) by 1%.

There are other benefits for our kids, but these are the ones that, as a parent, give me the most hope for my daughter's future.

The May 13 National Call-In to the Senate has been announced by the Consortium for Citizens with Disabilities. Disability rights groups around the country are spreading the news. The CCD has even provided an example script for call-ins, but if we are going to call as the parents of children with disabilities (and I think we need our voices heard), the script needs to be altered a bit.

Here is the entire report that was released yesterday.

The section on long-term care and the Medicaid HCBS (Home and Community Based Supports) waiver programs begins on page 49.

Please participate in tomorrow's call-in. It could have a tremendous impact on our children's future.

The procedure for tomorrow is:

When: Wednesday, May 13 (Between 8AM and 6PM EDT)
Call-In Number: 1-866-459-9232 (Toll Free)

You will be asked which state you are calling from and will be connected to your Senators’ offices.



Here is the sample script being distributed via the CCD:

Hello (state your name and where you are calling from).

I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. Long-term services and supports are essential to the health, well-being, and community participation of individuals with disabilities and seniors. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.




You might want to think about this as an alternative, to reflect our role in the discussions:

Hello my names is {...} and I'm calling from {city} in {state}.

I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. I'm the {mother,father,grandmother,etc} of a child with disabilities, and these long-term services and supports are essential to {his/her} civil right to remain with {his/her} family. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.



Here is the list of US senators, and you can sort it by state. http://www.senate.gov/general/contact_information/senators_cfm.cfm

Remember, it's best if you call rather than emailing or using their form online. Priority in the senate offices is always given to telephone calls, and you can use the toll free number I listed above to then get transfered to your senator's office.

Saturday, May 9, 2009

(both men & women, sons & daughters -
Need to read this)


BEING A MOTHER...


After 17 years of marriage, my wife wanted me to
take another woman out to dinner and a movie. She

said, 'I love you, but I know this other woman loves
you and would love to spend some time with you.'
* * *
The other woman that my wife wanted me to visit
was my MOTHER, who has been alone for 20 years,
but the demands of my work and my two boys had
made it possible to visit her only occasionally.
* * *
That night I called to invite her to go out for
dinner and a movie.
* * *
'What's wrong, aren't you well,' she asked?
* * *
My mother is the type of woman who suspects that a
late night call or a surprise invitation is a sign
of bad news.
* * *
'I thought it would be pleasant to spend some
time with you,' I responded. 'Just the two of us.'
She thought about it for a moment, and then said,
'I would like that very much.'
* * *
That Friday after work, as I drove over to pick
her up I was a bit nervous. When I arrived at her
house, I noticed that she, too, seemed to be nervous
about our date. She waited in
by door. She had curled her hair and was wearing the dress that she had worn to celebrate her last
birthday on November 19th.
* * *
She smiled from a face that was as radiant as an
angels. 'I told my friends that I was going to go
out with my son, and they were impressed,' she said,
as she got into that new white van. 'They can't wait to hear about our date'.
* * *
We went to a restaurant that, although not
elegant, was very nice and cozy. My mother took my
arm as if she were the First Lady. After we sat
down, I had to read the menu. Her eyes could only
read large print. Half way through the entries, I
lifted my eyes and saw Mom sitting there staring at
me. A nostalgic smile was on her lips. 'It was I
who used to have to read the menu when you were
small,' she said. 'Then it's time that you relax and
let me return the favor,' I responded.
* * *
During the dinner, we had an agreeable

conversation-nothing extraordinary but catching up
on recent events of each other's life. We talked so
much that we missed the movie.
* * *
As we arrived at her house later, she said, 'I'll
go out with you again, but only if you let me invite
you.' I agreed.
* * *
'How was your dinner date ?' asked my wife when I
got home.
'Very nice. Much more so than I could have imagined,' I answered.
* * *
A few days later, my mother died of a massive
heart attack. It happened so suddenly that I didn't
have a chance to do anything for her.
* * *
Some time later, I received an envelope with a
copy of a restaurant receipt from the same place
mother and I had dined. An attached note said: 'I
paid this bill in advance. I wasn't sure that I
could be there; but nevertheless, I paid for two

plates - one for you and the other for your wife.
You will never know what that night meant for me. I
love you, son.'
* * *
At that moment, I understood the importance of
saying in time: 'I LOVE YOU' and to give our loved
ones the time that they deserve. Nothing in life is
more important than your family. Give them the time
they deserve, because these things cannot be put off
till 'some other time.'
* * *
Somebody said it takes about 6 weeks to get back
to normal after you've had a baby.... somebody
doesn't know that once you're a mother,
'normal' is history.
* * *
Somebody said you learn how to be a mother by
instinct... somebody never took a three-year-old shopping.

* * *
Somebody said being a mother is boring....
somebody never rode in a car driven by a teenager with a driver's permit. Somebody said if you're a' good' mother,

your child will 'turn out good'....

somebody thinks a child comes with
directions and a guarantee.
* * *
Somebody said you don't need an education to be a
mother.... somebody never helped a fourth grader
with his math.
* * *
Somebody said you can't love the second child as
much as you love the first.... somebody doesn't have two children.
* * *
Somebody said the hardest part of being a mother
is labor and delivery....

somebody never watched her 'baby' get on the bus

for the first day of kindergarten .
or on a plane headed for military 'boot camp.'
* * *
Somebody said a mother can stop worrying after her
child gets married.....somebody doesn't know that
marriage adds a new son or daughter-in-law to a
mother's heartstrings.
* * *
Somebody said a mother's job is done when her last
child leaves home....somebody never had
grandchildren.
* * *
Somebody said your mother knows you love her, so
you don't need to tell her.... somebody isn't a
mother.
* * *

Pass this along to all the 'mothers' in your life
And to everyone who ever had a mother. This isn't
just about being a mother; it's about appreciating
The people in your life while you have them....no matter who that person

Sunday, March 22, 2009

Giving Thanks for a Special Needs Child

An online friend posted this on a support forum I belong to and I thought it was pretty neat and I wanted to share it with people who work with the special needs and for parents and loved who are related to the special needs. Having two special needs boys, I can relate to a lot of these also. lol
Blessings,
Gina Marie


1) You never have to worry about worrying over nothing.
Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about.

2) Developmental delays = more years of hugs, kisses, and little-kid sweetness.
My 13-year-old still wants to sit in my lap, give me hugs, and tell me he loves me. What mom of a sullen teen doesn't secretly wish for the same?

3) Maybe someday, Ty Pennington will come build you a house.
Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.

4) Any little milestone is a cause to throw a party.
Your child works hard for every step, sit-up and syllable, giving you lots to be excited about.

5) Every day is a learning experience.
Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure.

6) You have the privilege of putting several doctors' children through college.
After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.

7) You meet a better class of parent in waiting rooms and support groups.
Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.

8) You have an iron-clad escape excuse for any occasion.
You'd love to stay at that boring party, crowded event, endless church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it -- who's to know?)

9) Coming up with new strategies every day keeps your brain sharp.
They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.

10) Your blessings will always be fully counted.
Other parents may take the gifts that their children bring for granted. Not you. Not ever.