Alexander and Makela spent an eternity climbing and sliding in one of the bouncy houses while Cathy and I chatted.
Tuesday, September 30, 2008
Alexander and Makela spent an eternity climbing and sliding in one of the bouncy houses while Cathy and I chatted.
Monday, September 29, 2008
I hate cancer.
Sunday, September 28, 2008
Then, it was time to wash hands for snack time. The kids got goldfish crackers and Cheerios with sippys of juice. They got experience scooping out the snacks and taking turns. There were more songs and talk about what happened during play time. Last was Circle Time on little rugs. The time was filled with jingle bells, singing, music, and a parachute. We said our good byes until next time.
Wednesday, September 24, 2008
Dial (217) 782-6830
and say you have a message for the governor. Say you demand that cuts be restored to developmental disability services, and that you want the governor to sign both SB 1103 and SB 790 into law immediately!
STOP READING THIS POST UNTIL YOU CALL
Thanks for calling.
In summary, the Senate voted yesterday to restore many of the Human Services Cuts!!!! THE GREAT NEWS IS A LOT WAS RESTORED!!! Our challenge now is to make sure Governor Blagojevich signs both SB 1103 and SB 790 into law immediately! We are so very close, but if the Governor fails to sign these bills---the cuts will remain. Senator Frerichs "strongly encourages" us to get as many people as we can to contact the Governors' office and insist he sign these bills immediately. There will be a lot of political pressure to use this money for other things. We have to let the Governor know that the people of the state are watching and it is time for him "To Do The Right Thing" and restore the services/supports to our states most vulnerable citizens! Believe me, they will be keeping track of how many contacts they receive. If we don't fight for these funds others will.
Tuesday, September 23, 2008
Saturday, September 20, 2008
Blast from the past
Do they look alike or what? And why do orange colored foods tint my kids' noses orange?
First Kisses: open mouth and slobbery
Friday, September 19, 2008
The State of Illinois is ranked dead last at 51 out of 50 states and Washington D.C. for how much funding is spent on developmental disabilities. We are 51 and Failing according to NAMI AND unbelievably falling even further behind.
In all their wisdom, the powers that be have cut $60.9 MILLION statewide in developmental disabilities services. For our local Developmental Services Center, its a whopping $300,000 in cuts. My family as been on a waiting list for Respite Care since December 2007 and were told it was a year long wait. I don't see it happening at all now.
Additionally, substance abuse services have received $55,000,000 in cuts and mental health services $35,600,000 in cuts according to Champaign County Mental Health Board and the Champaign County Board for Care and Treatment of Persons with a Developmental Disability. TRANSLATION: The State of IL is cutting off the lifeline for its citizens who are the most vulnerable. They THINK they are cutting funding to those without the ability to stand up and fight. They forgot about mama and papa bears.
At the Public Forum 2 nights ago I heard consumers, staff, and parents get up and speak about how these cuts to an already despicable budget will affect them. I heard about how the local DV and Rape Crisis Center will be pushed back to funding levels of 6 years ago. A staff member asked which child victim of sexual assault they should turn away from their door, one who is raped today or one who took a few years to find the courage to come forward? Substance abuse programs are in danger of locking their doors. Detox services will be gone.
I was not prepared for how emotional this forum would be. As I heard a mother describe her fears of what will happen to her child who has developmental disabilities after she is gone from this earth, I cried. I don't normally let myself think those thoughts about Sophie's life after Mark and I are gone. She said, 'it's horrible for parents to pray that we live only 1 day longer than our children with a DD' and my stomach lurched, my heart pierced with pain. Services are already years long, especially for our kids who grow up and commit the "crime" of turning 21. Group homes, work programs all at risk.
Two recovering addicts spoke and their words really affected me. Detox saved 'him.' Take detox programs away and the state will pay for 'him' anyway when he ends up in prison and it will be much more expensive. It's true. Cuts to these services won't make the expense go away. It just transfers them to the ER, the prisons, and the morgue. The other speaker suggested that we relocate detox to the Governor's mansion. I'm all for that.
To pour salt on the wound, the state has admitted to intentional 'slow-pay' POLICY of it's current bills and contractual obligations. In her August 27, 2008 letter to providers, Ms. Lilia Teninty of DHS stated "the payment cycle is being lengthened as much as necessary to accommodate reductions," bureaucrat-speak for "we have decided not to pay our bills on time." The Boys and Girls Club never received the $100,000 that they were 'given,' last year. Can you imagine saying that to your electric company, or mortgage lender/landlord?
So what to do? The IL House of Representatives has already voted to reinstate the funding cuts. If the Senate waits to reconvene in November, too many programs and services will be gone. They need to come back into session NOW and DO THE RIGHT THING AND PUT PEOPLE FIRST by reinstating the cuts!
Don't live in IL? Don't have to. Call on behalf of Sophie and all of us. Call once everyday. It only takes a couple of minutes and its not scary or hard at all. Don't let it remain true that they have received more calls about State Parks being closed than about these cuts. As it was said at the forum, trees will continue to grow, but people will die because of these cuts. Call and say, "Your (niece/granddaughter/friend) has a developmental disability and lives in IL. You are outraged about the cuts to developmental disability services. You want the Senate back now to reinstate the cuts. Sophie deserves these services to live her life to her fullest."
Rod R. Blagojevich, Governor100 W. Randolph Street, Ste. 16-100Chicago, IL 60601 (312) 814-2121207 State House Springfield, IL 62706 (217) 782-6830 http://www.illinois.gov/ or http://www.illinois.gov/gov/contactthegovernor.cfm
Emil Jones, Senate President 507 W. 111th Street Chicago, Il 60628 (773) 995-7748, 327 Capitol Building Springfield, IL 62706, (217) 782-2728 firstname.lastname@example.org
Michael J. Madigan, Speaker of the House6500 S. Pulaski Rd. Chicago, IL 60629 (773) 581-8000, 300 Capitol Building Springfield, IL 62706 (217) 782-5350 email@example.com
You may even direct these questions higher to United States Senator and Presidential Candidate Barak Obama. I know I am. Did you read this far? Congrats. Leave me a comment and I'll bake you a cookie.
Wednesday, September 17, 2008
Tuesday, September 16, 2008
To prepare for this meeting her therapists have been testing her, which means working her hard, scoring her based on how she performed, and asking me lots of questions. Questions like, "does Sophie respond to her name?" Yes, just not when you're here. "What words does she say?" Her favorite is Baby, but she'll wait till you pull out of the driveway to say it. "Does Sophie look between you and Mark when you're having a conversation?" I don't honestly know, but you should see her tackle long division.
As Sophie has a diagnosis of Ds, she does not need a 30% delay to qualify for services, but we get to see how she scores anyway. I know it's a good thing to know where we are with her speech, gross and fine motor, and cognitive abilities, and to come up with goals for the next 6 months, but dang it is not fun. Our new plan is to increase her DT to twice a month which means weekly ST, every other week PT and once monthly OT.
"What are your concerns right now?" You mean in what glaring ways has she already slipped behind in her development? Ds effects every person in different ways. Sophie has peers who have lots of different health concerns, skills, and challenges. I know my daughter is a Rock Star in her own way, but it's times like these when we're forced to put her under a microscope that it can be hard.
Today I just want to shut the world out and eat ice cream by the bucket. (give me 9 months and I'll be begging for a good red whine). Then, like clockwork, a friend showed up when she didn't know I needed her with a pair of neon pink spandex HipHelpers for Soph that she ordered herself after learning EI still hasn't gotten around to it. The order with EI was placed in early July. We both blamed my tears on pregnancy hormones. HipHelpers will help keep Sophie from doing the splits while sitting/crawling/kneeling/and eventually standing. More on HipHelpers another time, but I'll just quote Paris and say, "they're HOT."
I'm off to do some damage to the chocolate chip ice cream. And now, more on therapy...
Monday, September 15, 2008
Hundreds of thousands of children are victims of sexual abuse each year. Due to the sheer lack of resources, law enforcement is unable to follow up on the majority of leads they have.
The PROTECT Our Children Act will:
- Authorize over $320 million over the next five years in desperately needed funding for law enforcement to investigate child exploitation.
- Mandate that child rescue be a top priority for law enforcement receiving federal funding.
- Allocate funds for high-tech computer software that can track down Internet predators.
Your U.S. senators will be voting on the bill soon, so it is crucial you contact them immediately. Go to here to find contact information for the senators in your state. Search for your senator by name or state by clicking on the arrow from either dropdown menu. Contact information is provided here. To send an e-mail, click on "Web Form" below his or her name, and e-mail your letter to make a difference!
Call Your Senators
If you choose to contact your senators by phone, be sure to tell them, "Vote yes on Senate Bill 1738—The PROTECT Our Children Act."
Write to Your Senators
If you choose to write a letter, fax, telegram or e-mail, you may use the sample letter—on Oprah's website and modify it how you see fit. The sample letter and instructions for how to copy and paste it can be found here.
Sunday, September 14, 2008
Harkin, Hatch Measure Fulfilling Promise Of Americans With Disabilities Act Passes Senate Unanimously
by Harkin Press Staff
Legislation responds to Supreme Court decisions that narrowed the definition of disability
Senators Tom Harkin (D-IA) and Orrin Hatch (R-UT) today announced that the Senate had approved by unanimous consent a bill that would clarify the law’s intent and ensure that all Americans with disabilities are protected from discrimination. The bill will need to be acted upon by the House of Representatives before being sent to the President’s desk.
The Senate bill is similar to bipartisan legislation introduced in the House by Majority Leader Steny Hoyer and Congressman Jim Sensenbrenner that passed by a 402-17 margin this summer.
Considered to be one of the landmark civil rights laws of the 20th century, the ADA was designed to protect any individual who is discriminated against on the basis of disability. The law was passed with overwhelming bipartisan support and was signed into law by President George H.W. Bush.
Since the ADA became law, a series of court decisions have narrowed the category of who qualifies as an "individual with a disability," contrary to Congressional intent. By raising the threshold for an impairment to qualify as a disability, these court decisions have deprived individuals of the discrimination protections Congress intended to provide.
The ADA Amendments Act would remedy this problem and restore workplace protections to every American with a disability. The bill leaves the ADA’s familiar disability definition intact, but takes several specific steps to direct courts toward a more generous meaning and application of the definition. The legislation would make it easier for people with disabilities to be covered by the ADA because it effectively expands the definition of disability to include many more major life activities, as well as a new category of major bodily functions.
"With today’s vote, we have restored the promise of the ADA which was signed into law 18 years ago," said Harkin, the chief author of the original ADA. "The protections afforded under this historic law have been eroded and the result is that people with serious conditions like epilepsy or diabetes could be forced to choose between treating their conditions and forfeiting their protections under the law. That is not what Congress intended when we passed the law, and this bill is the right fix."
"This is a historic day," said Hatch. "This bill continues our ongoing effort to expand opportunities for individuals with disabilities to participate in the American Dream. Passage of the ADA Amendments Act ensures that the Americans with Disabilities Act will continue to help change lives. I’m proud to have worked with my good friend Tom Harkin in crafting this monumental bill that enjoys such strong bipartisan support."
The ADA Amendments Act enjoys strong support by advocacy groups, including most national disability organizations, 23 major veterans organizations, the U.S. Chamber of Commerce, the National Association of Manufacturers, the Society for Human Resource Management, and the Human Resources Policy Association.
Statement of Senator Barack Obama on the Senate's Passage of the ADA Amendments Act of 2008
Thursday, September 11, 2008
For Immediate Release
Contact: Michael Ortiz
WASHINGTON, D.C. - U.S. Senator Barack Obama today released the following statement after the Senate passed the ADA Amendments Act of 2008, S. 3406. Senator Obama is a cosponsor of this legislation.
"With nearly fifty-four million Americans living with disabilities, it must be a priority for our government to do everything it can to protect and respect the needs of these Americans. I am proud the Senate passed this Act today to reverse judicial decisions that permit discrimination against persons with disabilities.
"Eighteen years ago, enacting the Americans with Disabilities Act was a historic milestone for millions of Americans when it was signed into law. It gave Americans with disabilities better access, more opportunities, and increased independence.
"While we still have much more to do, today's passage is an important affirmation of our commitment to disabled Americans. I commend Senator Harkin, a true leader on this issue, for working to pass this legislation."
Thursday, September 11, 2008
It is so strange to me to think that my kids will be raised in a post 9/11 world, that they weren't here before that day 7 years ago. I remember exactly where I was. Mark and I had just gotten married and moved to Madison, WI in July. I still wasn't working and was home in bed when Darcy called and told me to turn on the tv. I remember calling my sister Liz and that she was so terrified that she wanted to pull Austin out of school. I didn't want Mark to go to class. He was on the phone with a professor when the first tower fell. I was home all day in our apartment, glued to the tv with the rest of the world, but all alone. It's hard to imagine that 7 years have passed.
Pictures from when Mark and I visited NY and Ground Zero in April 2003.
NY Stock Exchange, April 2003
As close to Ground Zero as we were allowed
Tuesday, September 9, 2008
"The nomination of Gov. Palin, a self-proclaimed hockey mom, has set off a firestorm of media commentary across the political spectrum and in the mom world. We want your help making sure that this commentary focuses on the issues like healthcare, fair pay, early learning, paid sick days, and maternity/paternity leave.
The media commentary shouldn't be about Gov. Palin's children, which is essentially unchecked gender bias, it should be about the issues--and where she stands on them. After all, we've had fathers in the White House for a couple hundred of years and their parental roles have yet to be an election issue. "
Click here to sign the letter.
Monday, September 8, 2008
Every year or so in different areas of the world, someone plans a meet up and members get together to overdose on one another's beautiful children. This weekend I went to my first meet-up. Mark stayed home to work. Alexander, Soph, and I rode with Larkin and Amy to Peoria. My crew shared a suite with Brigette and Josie and Amy F. and MayMay. 15 families, 2 countries, and 4 states were represented this weekend. We played. We laughed our butts off. We cried. I'm still taking it all in. It was a weekend I'll never ever forget.
Feel free to take a peek at some of the most beautiful faces you'll ever have the privilege of laying eyes on. I always cry like a baby as I see the joy in the kids' faces and the obvious love and adoration from the families.
Sunday, September 7, 2008
Here's a link that includes a video and Obama's fact sheet on his plan to empower people with disabilities. I looked for a similar response from his opponent. Although McCain's website has a section "on the issues" I did not see disability issues listed. If you are aware of such a plan, please leave me a comment with a link and I'll be sure to check it out.