Tuesday, September 30, 2008

Fall Festival

It was probably the last outing of the year that you could honestly call hot. We had a blast with Cathy's crew at their church's Fall Festival. They had carnival games, a toddler area, 2 large bouncy houses, live music, a hayride, carmel apple making, face painting, a fire truck, a k-9 unit, and pumpkin decorating.

Sophie had a blast with Paige in the ball pit and cursed me out when I took her out. OK, maybe it was just a stern talking to. The girl knows what she likes.

Alexander and Makela spent an eternity climbing and sliding in one of the bouncy houses while Cathy and I chatted.
Alexander was so cute when he would ask Makela to hold his hand to go down the slide. She was even cuter when she happily agreed. The carmel apples were yummy (we skipped the cotton candy and chili dogs). We were sorry to have missed Dom who had to go home before we got there due to the heat and sun. What a fun day.
video
Did you notice Alexander's hair cut?

Monday, September 29, 2008

Burgers for Cancer

We don't often go out to dinner. It's usually too expensive and have I mentioned that we have a squirmy 3 year old? Tonight we ventured out to Chili's. All profits made tonight go to St. Jude Children's Research Hospital for children's cancer research.

Children's cancer. Two very scary words when used together. Kids who have Down syndrome are more likely to get Leukemia, though they tend to respond better with higher success rates and lower relapses. We usually refer to it as the "L" word. Web MD writes about why this occurs in very non-people first language.

Tonight we had burgers for Sincess Kennedy who is cured and all the kids facing this terrible disease. We colored a chili pepper in honor of my sweet cousin Alyssa "Sissy" who at age 4 won her ultimate battle with cancer and is in Heaven.

I hate cancer.

Sunday, September 28, 2008

Developmental Playgroup

Last week Sophie started a playgroup at our local Developmental Services Center. This is a very wonderful playgroup and already I can tell the staff are very caring and knowledgeable people. Developmental Playgroup is for little ones with some sort of developmental need, though Sophie is the only child with Down syndrome in the group. Her peers are 1-2 years old. Sophie was the only newbie in a small group of 3 kids. A few kids will be starting in October and a few more called in sick so it will be bigger soon. That day with only 3 kids and 2 staff plus an intern, we were one-to-one. There are waiting lists for this playgroup and I can see why.

During playgroup I 'play' right along side of Sophie for an hour and a half, once each week while Alexander is in preschool. It is written into her IFSP and is at no extra cost to us. Each playgroup follows the same pattern. First up is free play among the many fun activities set out in the room. Sophie took a little warming up to each activity, but after a few moments, seemed to enjoy each thing she did. Her favorite was sitting in the ball pit. At first when Ms. H. scooped more balls on her she would kick and push them away. Soon, she was having, well, a ball and didn't want to get out.

Then we do the "clean up" song while laundry baskets are passed out to collect toys. The purpose isn't really to get the little ones to clean the room, but to gain experience being helpers and engage in an activity that signals transition to the next activity.

Next was an art project. The little ones put on smocks and sat in tiny chairs around the little table covered in paper. The older kids had paint rollers and blobs of of different colored paint right on the paper in front of them to roll and mix. Sophie had a large zip lock baggie with red paint on one side and blue paint on the other. They taped the baggie down on the table and Soph squished the baggie. She mixed the colors together making purple. She loved it. I was amazed as I never would have thought of that. Frankly, seeing my little girl in a smock like a big girl at the table was an experience - for me.

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.
I can see that this playgroup is going to be AMAZING for Soph. She is a very social girl, but has limited interaction with kids who aren't her brother. She had a great time and so did I. The staff know what they are doing and are lovely. They are so good at gently but firmly encouraging Sophie to try new things. I can already see that I have a lot to learn about my daughter and her capabilities. This playgroup is just the thing to show us both what she can do.

video

Wednesday, September 24, 2008

48 Seconds

That's all I ask. That's 1 minute rounded up off of your cell phone plan and it could mean a world of difference. That's all the longer it took for me to call Governor Blagojevich and demand that funds be reinstated to developmental disabilities services in IL. They did not ask my name or where I was calling from. You don't have to live in IL to call and make a difference. Don't know how to pronounce his name? That's Ok.

Dial (217) 782-6830

RIGHT NOW

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

I (Heart) Your Blog Too


I received the nicest acknowledgement from fellow blogger at Lovely and Amazing. Emily Elizabeth awarded me with the I Love Your Blog award. I am honored and thank you so much. Please pop on over to her blog and see just how Lovely and Amazing this wonderbabe is. I Love Your Blog back at ya! So, whom shall I pass this on to? hmmm

Saturday, September 20, 2008

Rites of Passage

Do all little ones eventually dump out a bag of goldfish crackers, or is it just my kids?
Blast from the past

Busted!

Do they look alike or what? And why do orange colored foods tint my kids' noses orange?
video

First Kisses: open mouth and slobbery

Friday, September 19, 2008

51 & Failing

I made my morning calls to Governor Rod R. Blagojevich, IL Senate President Emil Jones (though voice mail was full so I had to write my message in an email), and IL Speaker of the House Michael J. Madigan. I am a mad momma.

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 jones@senatedem.ilga.gov

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 mmadigan@hds.ilga.gov

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

(somewhat) Wordless Wednesday, Preschool

1st Day of Preschool (cubby hole name tag)



after school sweaty head boy!

a study in napping

Tuesday, September 16, 2008

E:60 Sacred Acre

ESPN's show E:60 just ran a very nice story about Parkersburg, Iowa. The story was about the EF5 tornado that wiped out 1/2 of the town this past May and how the love of the game - high school football - has brought so much hope and joy to the community. Here are previous posts and here and here and here about P'burg and below is the promo video.

What Do Therapies Look Like Pt. 3

Sophie's first IFSP with Early Intervention (for her therapies) was last October, (the 6 month was in April) so were due for another in the next couple of weeks. In my mind IFSP stands for I Feel Sophie's Perfect.

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...
video

Monday, September 15, 2008

Help Pass Senate Bill 1738—The PROTECT Our Children Act

Thanks to Oprah for the heads-up! Hopefully as a result of her show that aired today, many people will reach out and demand that this non-partisan bill with funding be passed. Regardless of how you feel about Oprah, please act quickly as voting will take place soon. I just emailed my senators and it only took 2 minutes. Lead sponsors of the bill are Sen. Joe Biden (D), Sen. Orrin Hatch (R), Rep. Wasserman Schultz (D), Rep. Joe Barton (R).

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.

Act Now!

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

ADA Amendments Act of 2008

September 11, 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."

Tina, I Loves Ya!

Because I'm still laughing so hard that I'm crying. And I'm pregnant, so that's dangerous with this bladder.

Thursday, September 11, 2008

Remembering 9/11

Taking time to remember and honor those lost on 9/11

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

The observation area at Ground Zero. Walls were written on, fliers, pictures of victims posted.


A building still covered in a black shroud at Ground Zero. Mark took this shot of me filming (in the middle)

Where were you when you first heard the terrible news? Here's Cathy's story and Renee's.

Wednesday, September 10, 2008

Tuesday, September 9, 2008

It should be about the issues

An amazing online organization that I belong to called MomsRising is asking Gov. Palin where she stands on key issues that mothers care about and deal with each and every day. They have recieved 17,000 signatures in just a few days and have a goal of 20,000.

"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

A meeting of the hearts

I've been a member of an international online support forum for a year called downsyn. In this one place, people from all walks of life, religions, political stances, ethnicity, etc. come together to share the love of our children that have a little something extra. Our common bond is our children (& sometimes grandchildren, nieces/nephews) who happen to have Down syndrome. Downsyn has been a place that I have come to rely on a a source of great knowledge. It is filled with momologists (& dads) who often know more about health issues than doctors and specialists I've come in contact with. We don't always agree on everything, especially when it comes to politics, but we always come to a meeting of the hearts. These families have held me up, given me encouragement and information and a shoulder to cry on each and every time I've needed it. I am blessed to have them and I owe that to my beautiful daughter Sophia Madison. For without her I would not have met so many wonderful people. I would not be the person I am today.

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.
video





Sunday, September 7, 2008

What's the Plan Stan?

Although it isn't the only factor in my choice of presidential candidate, this is a Big one. I fully intend to learn from both sides on what their plans are to support people with disabilities. Showing me how they will be a friend and advocate in the White House for those of us in the special needs community is of critical importance to me.

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.