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.

Did you notice Alexander's hair cut?

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.

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.

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.

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

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?

First Kisses: open mouth and slobbery

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.