This is for my little buddy. Someday, I will share my last cookie with you!
Until Next Time!
Lots of Love,
Sunday, October 14, 2012
Saturday, October 13, 2012
Comparison
This seems appropriate for this blog. I know a lot of moms who have kids with special needs. Comparison is something that effects a lot of them. Comparison to their siblings or other people's children. I've been fortunate enough not to have these feelings (even though I thought for sure I would). It's totally normal and something that takes work to get past. Hugs to anyone going through it right now.
Until Next Time!
Lots of Love,
Friday, October 12, 2012
Weekly Therapy Update & More
Monday was Daddy's birthday and he decided to take half the day off. We went out to lunch to the Seafood Shanty because we had never been there before. Lily and Isabella had calamari with lemon aioli. It was really good!
After lunch, we went to Weaver's Orchard to pick a pumpkin and get apples. The weather wasn't the nicest but Isabella was still very excited to pick out a pumpkin.
This isn't a great picture of Lily, but I wanted to show you her and Isabella's matching fleece.
Isabella loves to wear matching cloths with Lily!
It was pretty cold outside, yet Raymond insisted on taking his shoes off. People probably thought we were horrible parents because our son wasn't wearing socks or shoes.
We bought apples. A lot of apples! I've been wanting to make and can apple butter and bake some other goodies. Isabella loves to help me in the kitchen.
We started with a bushel of apples.
She helped me peel the apples.
The she showed me how long the peels were.
Then I chopped them up and we let them simmer.
Yummy!!!
I can't wait to eat apple butter on fresh baked biscuits.
We also made apple dumplings and apple pie filling. I don't use the apple pie filling for pies. I use it with carrots and make baked apples and carrots. It's a really good side dish this time of year to have with ham or turkey.
Here are Raymond's updates for the week.
"Raymond had a good session today. He followed directions well for approximately 35 minutes. Raymond practiced sitting in a variety of positions while playing: sidesit when positioned, long sit and kneeling with help. He tolerates these positions for longer periods of time without fighting it. Raymond preformed half kneel into stand 1 time with moderate assistance."
-Lisa, Physical Therapist
10/10/2012
"Raymond was ready to play today.
He labeled "car" and said "go" and imitated up and used "down".
Animal puzzle - He signed pig and bird. He said "quack", "moo", "baa", "neigh", "oink" and "woof".
Potato Head - Raymond labeled eyes, nose, and hat. Worked on following directions to take parts off. He pointed to them on himself but not on head.
Raymond used "all done".
-Kristen, Speech Therapist
10/11/2012
"Raymond is working on gesturing colors - red, blue
He gestured red and blue and verbally approximated red.
He was able to match a fish 12 piece puzzle accurately 100% - Great fine motor skills to manipulate pieces into place. We labeled each color with verbal and gestural prompts."
-Stacy, Special Instruction
10/11/2012
Until Next Time!
Lots of Love,
Thursday, October 11, 2012
Determiation Trumps Down Sydrome
Unfortunately, I wasn't able to get this video to show on the blog. Please take a minute to click on the link and watch. John Anton is such an inspiration!
Until Next Time!
Lots of Love,
Wednesday, October 10, 2012
Actor's with Down Syndrome Raise Awareness
Sept. 14, 2012
Today, doctors tell parents that their babies will grow up and be like "Becky," a character on "Glee" who has Down syndrome -- and quite a bit of sass as she rocks a cheerleading uniform at the fictional William McKinley High School.
"It changes it for parents," said Williamson, the woman who connected "Glee" with Lauren Potter, the actress who plays Becky; Robin Trocki, the actress who played Sue Sylvester's big sister, Jean; and Jordyn Orr, the baby who made her "Glee" debut as Sue's daughter Thursday night. They all have Down syndrome.
And the ladies of Glee are not alone, said Willliamson, who now runs Down Syndrome in Arts and Media after spending 12 years at the California Governor's Committee on Employment of People with Disabilities. Actors with Down syndrome will also be on "Shameless," "American Horror Story," "Blue Bloods," "Legit" and "The New Normal" this year, changing the public's perception of the syndrome one viewer at a time.
Down syndrome hasn't been this prevalent in entertainment since Chris Burke played Corky Thatcher on ABC's "Life Goes On" from 1989 through 1993, Williamson said, adding that she remembers how life changed for Blair after it debuted.
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| Lauren Potter, who plays Becky Jackson on Glee, with Jordyn Orr (Robin Sylvester) Gail Williamson and Robin Trocki (Jean Sylvester). (Gail Williamson) |
"Waiters would turn to him and say, 'What would you like to eat?'" she said, adding that they'd previously asked her what he wanted instead. "People didn't realize they could talk to that face … I saw a change. I saw the difference. And I saw it again after 'Glee.'"
Potter, 22, was a baby when "Life Goes On" was on television, so she said she never had a television role model who had Down syndrome. But now, people will run across parking lots and line up for her autograph as if she's Santa Claus.
"I just felt like I wanted to cry," Potter said. "They were saying that I was their inspiration. These fans are really my heroes."
Her mom, Robin Sinkhorn, said the best thing is when college and high school students aren't afraid to say hello, and tell Potter that she inspired them to learn more about Down syndrome. Potter is now part of an anti-bullying campaign and is on President Obama's Committee for People with Intellectual Disabilities.
"It's pretty amazing what this kid has done, and this gift that 'Glee' and the producers of 'Glee' have given her," Sinkhorn said. "She's reached out to a lot of people."
To the National Down Syndrome Society, the awareness from TV shows is a huge help because it generates interest in their website, research and fundraising, said Julie Cevallos, the organization's vice president of marketing. She said web traffic data to ndss.org isn't available as far back as late 2009, when Potter made her "Glee" debut, but they've seen a 10 percent increase between 2010 and 2011.
Considering that the average life expectancy for a person with Down syndrome went from 25 in 1983 to near 60 today, according to NDSS, there's plenty of health research to be done.
For instance, Robin Trocki had to be written off "Glee" because she has Alzheimer's disease, which is common in people with Down syndrome because the gene is located on chromosome 21, of which people with Down syndrome have three copies instead of two. (Sue's new baby on the show is named Robin for her.)
NDSS is also working on a bill that would save families tax money if they include a person with Down syndrome.
But changing people's perception is powerful all by itself, Cevallos said, adding that people find it surprising that many people with Down syndrome live independently and have boyfriends or girlfriends just like anyone else.
"It's helpful in terms of getting an accurate picture out there," Cevallos said. "There's a lot of old stereotypes…A lot of people [with Down syndrome] are going to college and I don't think the average person understands that."
In fact, Potter attends theater classes at a community college. Jamie Brewer, who has Down syndrome and plays Adelaide on American Horror Story, said she is getting her Bachelor of Fine Arts degree at a community college in Southern California where she lives. Just before talking to ABCNews.com, she was attending a math class.
"The biggest thing is advocacy," Brewer said. "You can really step up and say, 'Hey, this is who I am. I have these great talents,' and I want to be able to show that."
I've been friends with Gail Williamson for some time now.
She does wonderful things for people living with Down Syndrome.
Bravo Gail!
Until Next Time!
Lots of Love,
Lots of Love,
Tuesday, October 9, 2012
Amelia
Some of you may remember a story I shared with you back in January about Amelia Rivera. She was denied a kidney transplant by The Children's Hospital of Philadelphia because she is "mentally retarded". Here is an update on Amelia and her family that puts a smile on my face...
Article courtesy of Strollerdurby
Amelia Rivera, a four-year-old New Jersey girl with Wolf-Hirschhorn Syndrome who was initially denied a kidney transplant by Children’s Hospital of Philadelphia last January, will be getting a new kidney after all.
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| Amelia Rivera |
Ms. Rivera wrote in a blog post yesterday:
“Our family received word about a month ago that Amelia is officially approved for the kidney transplant. All of her specialists, and some we have only just met, have agreed that there is no medical reason for her not to have the transplant. I will donate my kidney when Amelia’s kidney function falls to about ten percent. She is at about 14% right now. Amelia was at 15% last December when we first heard the news that she would need a kidney transplant.”
Amelia’s case received national attention after Ms. Rivera wrote a blog post entitled “Brick Walls” that detailed her agony when her daughter was initially denied a transplant due to, as it said on documentation, her “mental retardation.”
Blogger Sunday Stillwell created an online petition at change.org asking CHOP to reconsider its decision. The petition was signed by over 50,000 people.
“I am beyond thrilled that Mia will finally receive the kidney transplant she deserves,” said Ms. Stillwell in an email to me. “I am thankful for the power social media played in changing the hearts and minds of those responsible for making this decision.”
“Team Mia” gained support from Timothy Shriver, the CEO of the Special Olympics, and New Jersey State Senate President Steve Sweeney.
Throughout the ordeal, Amelia’s parents, Joe and Chrissy Rivera, remained optimistic that CHOP would reconsider, and praised the care Amelia had received at the nationally-renowned children’s hospital.
In a statement jointly released by CHOP and the Rivera family in February, the hospital apologized, and stated that it would be changing some of its policies. In the statement, the Riveras said,
“Despite an unfortunate encounter a few weeks ago, we hold The Children’s Hospital of Philadelphia in high regard. We’ve had a three year relationship with the hospital and are pleased with the care that Amelia has received. Our hope is that this experience will heighten the medical community’s sensitivity to and support for the disabilities community. By agreeing to update their process and materials to put people first, above their diagnoses, a respect for people’s humanity is communicated above all else.”
In the wake of the immense outcry over Amelia’s story, legislation was passed in New Jersey that would penalize any hospital that denied a transplant to a patient on the basis of intellectual disability. The Children’s Hospital of Philadelphia, while based in Pennsylvania, has primary care and specialty care offices in several New Jersey locations. It also has affiliations with hospitals in Princeton and Somers Point, NJ.
Until Next Time!
Lots of Love,
Lots of Love,
Monday, October 8, 2012
Happy Birthday!
Today is Chris' birthday. Isabella always likes to send Daddy a birthday wish on the blog. So this year, I googled "happy birthday for him" to see if I could find a fun picture to attach along with her message. Amongst the balloon and cakes graphics was THIS...
So there you go! Happy Birthday Daddy!
Just as an FYI, if it was my birthday, and I opened up the bedroom door to find this, I would not be disappointed. I wonder if I can add him to my Amazon Wishlist? LOL!
Until Next Time!
Lots of Love,
Lots of Love,
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