Tuesday, January 31, 2012

Meet Jordan Wiggins, Special Olympian


"Special Olympics gives Jordan the knowledge that he matters, he belongs to something." That is how Jenny Wiggins describes her son’s experience as a Special Olympics athlete.
Knowing he matters – wow, that is powerful. Jordan Wiggins has been involved in Special Olympics since he was eight years old. He competes in aquatics, athletics and bowling and looks forward to participating. But over the years Special Olympics has meant a lot to the entire family. They simply cannot imagine life without it.
Jordan is proud of his medals – hangs them in his room and shows them off. Swimming is his favorite activity and the whole family goes to an indoor pool a couple of times a week. Today, Jordan is 15, attends high school, and competes in Special Olympics most seasons. Sports taught Jordan how to succeed.
Mom Jenny explains that Special Olympics recognizes the abilities of all athletes and inspires each to do their best. "So many times, children are told they can’t do things. If you put Jordan in a regular organized sport, it would be difficult for him to understand all the rules. At Special Olympics, they help Jordan know what’s expected of him. For instance, Jordan might say, 'I can’t do it.' The coaches will say, 'Yes, you can.' It may take 10 times, but they give him
the opportunity to do it 10 times, and he succeeds!"

Be gentle.

Monday, January 30, 2012

Basketball fun!

Yesterday, our Special Olympics team attended a tournament sponsored by VIP.  Our kids had a great time and it was great practice for the regional Special Olympics tournament in March.

Enjoy the fun and joy in these photos.

Be gentle.

Sunday, January 29, 2012

Lauren Potter! Glee! SAG award nomination.

Lauren Potter has been nominated for a 2012 SAG award.  Screen Actors Guild is honoring their own tonight and one of my favorite actresses is up for an award.  If you get a chance, watch the awards.  Better yet, watch Lauren in Glee.  This show will leave you with a smile for its timely and well handled topics.  I am proud to be a fan of Lauren Potter and Glee!

Lauren Potter is an American actress who portrays Becky Jackson, the Cheerios co-captain (with Santana Lopez) on the hit TV show Glee. Lauren and her character Becky both have Down Syndrome, but she doesn't let it stop her from doing things she wants to do, such as acting.
Lauren is from Riverside CA, and is seen sometimes at the local YMCA.
Lauren Potter is also a White House advisor since November 2011. President Barack Obama appointed Potter to the President's Committee for People with Intellectual Disabilities, where she will advise the White House on issues related to that population.


About Glee

Glee is an American musical comedy-drama television series that airs on Fox in the United States. It focuses on the high school glee club New Directions competing on the show choir competition circuit, while its members deal with relationships, sexuality and social issues. The initial main cast encompassed club director and Spanish teacher Will Schuester (Matthew Morrison), cheerleading coach Sue Sylvester (Jane Lynch), guidance counselor Emma Pillsbury (Jayma Mays), Will's wife Terri (Jessalyn Gilsig), and eight club members played by Dianna AgronChris ColferKevin McHaleLea MicheleCory MonteithAmber RileyMark Salling and Jenna Ushkowitz. For the second season, formerly recurring cast members Mike O'MalleyHeather Morris and Naya Rivera were promoted to the main cast. For the third season, Harry Shum, Jr. and Darren Criss were promoted from recurring to the main cast, and both Gilsig and O'Malley were removed from star billing, though the latter is again in the recurring guest cast.
The series was created by Ryan MurphyBrad Falchuk and Ian Brennan, the last of whom first conceived of Glee as a film. The three wrote all of the show's episodes for the first two seasons, and Murphy and Falchuk served as the show's main directors. The pilot episode was broadcast on May 19, 2009, and the first season aired from September 9, 2009 to June 8, 2010. The second season aired from September 21, 2010 to May 24, 2011, and thethird season began airing on September 20, 2011. Glee features on-screen performance-based musical numbers that are selected by Murphy, who aims to maintain a balance between show tunes and chart hits, and produced by Adam Anders. Songs covered in the show are released through the iTunes Store during the week of broadcast, and a series of Glee albums have been released by Columbia Records. The music of Glee has been a commercial success, with over thirty-six million digital single sales and eleven million album sales worldwide through October 2011. The series' merchandise also includes DVD and Blu-ray releases, a young adult book series, an iPad application, and a karaoke game for the Wii.
During its first season, Glee received generally favorable reviews from critics, with Metacritic's weighted average of 77 out of 100 based on eighteen critical reviews. The season was nominated for nineteen Emmy Awards, four Golden Globe Awards, six Satellite Awards and fifty-seven other awards, with wins including the 2010 Golden Globe Award for Best Television Series – Musical or Comedy, and Emmy awards for Jane Lynch, guest-star Neil Patrick Harris and Murphy's direction of the pilot episode. In 2011, the show once again won the Golden Globe Award for Best Television Series – Musical or Comedy. Jane Lynch and Chris Colfer won Golden Globes for Best Supporting Actress and Best Supporting Actor respectively; Matthew Morrison and Lea Michele also received nominations for Best Actor and Best Actress respectively. The show was also chosen by Fox to fill the coveted timeslot that followed the network's coverage of Super Bowl XLV in 2011. On July 14, 2011, Glee was nominated for twelve Primetime Emmys.

Be gentle.

Saturday, January 28, 2012

A Smile as Big as the Moon

If you are looking for a good view on Sunday, check out the Hallmark move, "A Smile as Big as the Moon".  

For a moment, John Corbett wasn't sure about this role.
In ABC's "A Smile as Big as the Moon," he was supposed to play Mike Kersjes, who was a Grand Rapids special-ed teacher and afootball coach. That's where the problem came.
"I didn't really like my high school football coach," Corbett said. "I thought of coaches as goons."
All of that dissolved when he met Kersjes. "He's gregarious," said Corbett, who shares that trait. "He likes a cocktail; he likes to laugh. He kind of looks like Dr. Phil."
And he has audacity, pushing for the elite U.S. Space Camp to accept his Forest Hills Northern High School class. "This was in 1988," Corbett said. "The camp was only six years old then and didn't have any special-ed programs."
Taking the role in this "Hallmark Hall of Fame" film was be a huge challenge for Corbett, who:
• Had never seen Space Camp. He does remember watching the moon landing when he was 8; much later, he met Buzz Aldrin, who described the last-minute crisis of being unable to find a landing site.
• Knew nothing about special-ed. "I'd never even met a kid with Down syndrome."
Now "Smile" put him with several actors who have Down syndrome, including Peter ten Brink, who plays Ben.
"Some of the best conversations in my life were with Peter .... He tells great jokes, he loves every country singer," Corbett said. "He's learning the guitar; he calls Taylor Swift on the phone sometimes."
For Corbett, who is working on his second country album, these are admirable traits. He and ten Brink worked together, doing large chunks of the film at the real Space Camp in Huntsville, Ala.
The story - taking a class from suburban Grand Rapids to Alabama - seems like a stretch. Then again, many parts of Corbett's own life are just as unlikely.
Flash back, for instance, to when he was a teenager, in an apartment with his mother in Wheeling, W.Va. He was a good athlete — abasketball center (6-foot-5, 200 pounds), a high-jumper and, despite disliking the coach, a football tight end. He also was a poor student (attention deficit problems) with no long-range plans. And at 18, he remembers staring in awe at the movie "10" and Bo Derek.
"I'd never seen anyone like that before," Corbett recalled. "I remember thinking, 'I wish I had a girlfriend as pretty as that.' "
Now he does. Corbett, 50, and Derek, 55, have been together for 10 years.
They live amid Northern California beauty, while he races off to acting jobs.
There were a lot of things in between, of course. There was Corbett traveling to California on a beanbag chair in the back of his friend's pickup ... Showing up there on the doorstep of his father, whom he'd only met a few times ... Getting a factory job until he hurt his back, and then going to community college, where he found an acting class ... And getting a huge break.
"I got lucky when I got 'Northern Exposure,'" Corbett said.
It was then a low-budget summer show and he was an unknown, but it lasted five seasons, with Corbett as Chris the disc jockey.
Other series kept piling up — "Lucky," "The Visitor," "United States of Tara," boyfriend duty in "Sex and the City" and in the movie "My Big Fat Greek Wedding."
Corbett even has a sharp change-up in "Parenthood," playing an ex-husband who's an alcoholic rock-and-roller. "I can do the nice guy roles," he said, "but it's nice to do something different."
Still, the nice-guy stuff beckons, including two "Hall of Fame" films. In "November Christmas," he was an earnest dad; now he's a coach who isn't even remotely a goon.

Be gentle.

Friday, January 27, 2012

Feeding the family

We have a small family fruit orchard.  It is one year old, so really not much of an orchard yet.  Last evening, William and I planted the latest additions to our orchard.  Well, William lasted for about 4 holes dug and disappeared back in the house to go play a video game.  Strange how that works with almost 12 year old boys.  It was a beautiful evening outside, so it was a perfect time enjoying planting our new fruit trees and newest additions of grapes (wine and table, yummy).
This is the way the trees and grapes arrived at the house

Not mine, but hopefully someday mine will look like this

Can't wait!

Be gentle.

Thursday, January 26, 2012

Gavin's Journey........

Every parent's nightmare.   CANCER.  No parent should have to go through it.  Children with Down Syndrome are at a higher risk for certain types of cancer.  Can you say a prayer for this family and families like them struggling from childhood cancers?

Cancer cells

Gavin Kennedy-Farrell is a five year old little boy who lives in Kitchener, Ontario with his mom and his two older sisters, Katlynn 11 and Courtney 15.  Gavin’s mom, Vanessa Farrell, is originally from St. Alban’s but moved away years ago like many others.
Vanessa is a single mom of three and her youngest child Gavin wasdiagnosed with Down Syndrome when she was four months pregnant and a congenital heart defect that would require surgery when he was seven months old.
A routine ultrasound detected an abnormality when she was expecting and from there she was sent to McMaster for a 3d ultrasound that confirmed the Down Syndrome.
 Hospital politics lean heavily on the side of abortion as she was given all the 'down' side of Down Syndrome. However, having spent so much of her life working with people with special needs, she could never have aborted a child based on any outcome.

Gavin was born under close watch at Hamilton hospital and, as predicted during pregnancy, his heart surgery was preformed when he was seven months old. He was tube fed at home until he was ten months old and today is still a little delayed in terms of mobility, as he is still not walking independently.

In September 2011, Gavin was also diagnosed with Acute Myeloid Leukemia.
Acute Myeloid Leukemia (AML) is cancer that starts inside bone marrow and in the soft tissue inside bones that helps form blood cells. The cancer grows from cells that would normally turn into white blood cells. Acute myelogenous leukemia (AML) is an aggressive, rare type of blood cancer manifested by infections, bleeding and a high rate of mortality.
It requires immediate treatment with intensive chemotherapy and sometimes also with bone marrow transplantation. Infections are a major cause of mortality in AML patients since intensive chemotherapy lowers the white blood cell (WBC) count and disrupts the immune system.
Colonystimulating factors (CSFs) are agents administered in order to increase the WBC count, in the hope that this will decrease the rate of infections.
His mom stated that on Thursday, September 15th Gavin came home from daycare with a peculiar looking rash on his chest, legs and back.
He was in great spirits and didn't appear to be bothered by the pin-like spots all over his body.
Forever the google queen, I narrowed it down to what I thought was petechiae. It is one of those rashes related to the blood and is often an underling symptom to much bigger issues, ie leukemia. Since the odds are stacked against children with DS for developing leukemia, I knew we needed blood work,” stated Ms. Farrell.
Off to emergency we went and the triage nurse confirmed my suspicions of petechiae and ordered blood work. Then the ride started. Gavin's platelets were low and they suspected an illness called ITP. Bottom line is that it is common and treatable. However, upon reviewing the smears again they became concerned. His white blood cells were too abnormal to ignore and they opted for a bone marrow biopsy. This confirmed AML (acute myeloid leukemia).” 
 Gavin is presently in round 2 of 4 aggressive chemotherapy at McMaster Paediatric Hospital in Hamilton and has had some rough days but always seems to find a smile for his mom.  The most obvious difference though between these two rounds is how well Gavin is feeling.
“Aside from feeling a bit stomach sick during his tube feeds, which can be controlled by speed and volume, he is doing great. He’s happy, energetic, and flirting with all the girls, says his mom, as only Gavin can do, when he wants to that is.”
This will no doubt be a tough road for our family and one which will not likely be finished for many months. However, I have to take each good day as it comes and realize that even though things are difficult right now, there is always someone who may be in a worse situation than me.
“ So, I thank God for what I have and am grateful. I am so fortunate to have such an amazing team of doctors who care for Gavin every day, two beautiful girls who have been so grown up through all of this, and family, friends and a community who have shown me that we are not fighting this battle alone,” said Ms. Farrell.
The McMaster Paediatric Hospital is his primary care facility in Ontario and as his mom would state is a “Home away from Home”.

Be gentle.

Wednesday, January 25, 2012

What happens when your Special Needs child grows into an adult?

Who is there for your child as they are growing up and learning?  As your child grows into adulthood, who is there for your child?

Interesting article.  I hope you enjoy reading it as much as I did?

Pearlie Hatcher calls her son, Jeffrey, “Mama’s baby.”
Jeffrey replies that he is a man. Physically, he is 45, and the gray hair creeping around his temples and the lines around his merry eyes show it.
Developmentally, he is a child. He always has been. He always will be. The Hatcher family learned when their youngest was an infant that he had Down syndrome.
The way Pearlie explained it to his siblings, he would “always be like a baby.”
Unfazed, one brother, 9 years old or so, asked if he could keep him for his own.
The brotherly instinct was sweet, and onto something. When a child is born with a developmental disability, he will in many ways never grow up, even as he grows older, into a man.
Parents will, if all goes well, watch their children leave the nest. The parental commitment will change from primary caretaker to supporter. Mothers and fathers can live their later years in retirement. Brothers and sisters can go their own separate ways.
Families that include a child with a developmental disability don’t just have a lifelong connection to their son or brother. They have a lifelong commitment to somebody who will always need help.
More than 31,000 people of all ages are served by the Division of Developmental Disabilities under Arizona’s Department of Economic Security. These are the people that fit state criteria, grouped into broad categories — autism, cerebral palsy, epilepsy, and by far the most common, cognitive disability — and most are eligible for long-term care because they are at risk of institutionalization otherwise.
More than 40 percent of the agency’s clients are, like Jeffrey Hatcher, adults, a population that has grown slightly in recent years.
And overall, the great majority — about 88 percent — live on their own or in the family home, not in a group or institutionalized setting.
Pearlie Hatcher’s commitment to her son is at her core. It always has been. It always will be.
Jeffrey still lives with his mother, who is 76. She is an elder and a widow but still sharp and independent and living in her own home. She and her son hold hands while they talk.
“Only death can stop me from taking care of him,” she says. “Nothing’s more important to me than Jeffrey.”
Russ Randall has been a special education teacher for more than 30 years.
More than a classroom teacher at Coconino High School, Randall is a counselor and advocate for students who have a wide range of challenges. He wants his students to have meaningful and realistic goals.
Depending on their needs, he helps them apply to college and fill out financial aid forms, or prepare for the aptitude test for enlisting in the military. If they’ve been denied long-term care by the state and it’s apparent they will still need assistance, he’ll stand with families to appeal. And he strongly holds to the idea that everybody is employable, even if they need support.
Currently, his key responsibility is to run Coconino High’s Transition to Work vocational rehabilitation program, which is supported through federal and school district funds. “Voc rehab” is a gentler, guided way for young and older adults with disabilities to gain work skills and an income.
Right now he has about 40 students each working very part-time — no more than 8 hours per week — for modest wages at school, nonprofits or community centers. The program is growing to include Flagstaff High students.
Whether the workers live with specific learning disabilities, profound cognitive delays or physical limitations, he finds that they all enjoy being industrious.
Students in special education have an Individualized Education Plan, or IEP. If they’re still receiving special services at 16, that IEP must contain an adult transition plan. It can include learning how to ride a bicycle or use a bus.
As a parent of college-aged children, Randall knows how complicated the adulthood steps can be for any family. For parents of children with disabilities, there’s fretting about how their grown children will fare when they die, how siblings will help.
“It is just hard. We talk to parents every day about what’s going to happen to their child as an adult,” he says. “It’s a frightening thing. And you know, it’s frightening for any parent with their child.”

Read more: http://azdailysun.com/news/local/taking-care-of-disabled-adults/article_711d521e-46a5-11e1-a34a-0019bb2963f4.html#ixzz1kTXE0ZJi

Be gentle.