This pulitzer prize winning video features developmentally disabled adults…one with fragile x syndrome. Check it out!!
Tag Archives: down syndrome
Survey
I get an email from our local ARC on various things happening locally and nationwide. This was a survey that I thought a lot of my reader’s could be interested in participating in. I’m a little saddened that fragile x isn’t on there but I think I’ll be okay 
VanderbiltKennedyCenter Online Survey
This survey is about the positive side of parenting a child with a disability.
Eligibility requirements are as follows:
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The parent must be 18 years or older,
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the parent must have a child between the ages of 8 and 25
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Children must have a diagnosis of one (and only one) of the following:
Surprisingly there are almost no studies that look at the ways the experience can strengthen people, while there is plenty of research that looks at negative outcomes for parents. This study will provide for a more balanced understanding of how having a child with a disability can change a person’s life. Benefits of the study include an opportunity to reflect upon the positive psychological growth that you may have experienced following the birth of your child with a disability.
The survey will take approximately 45-60 minutes to complete and consists of a series of questionnaires about you and your child. At the end of the study you will have the opportunity to write your thoughts in an unstructured format.
The survey will be online until July 1st, 2008.
For further information, you may contact Teresa Ulman by email at Teresa.ulman@vanderbilt.edu or by phone at 615-414-9665 or 888-322-5339.
You may begin participation in the study immediately by clicking on the following link: http://www.surveymonkey.com/s.aspx?sm=9PcSEcLZbbEXiYGmlWussw_3d_3d
Inclusive PE
For once, I’m speechless. So here is a news article for y’all. Maybe tomorrow I will have something empowering, enlightening or en-something 
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Unified Olympics join students of all stripes together
Team effort – Inclusive PE program matches Forest Grove students of varied abilities in games that support all players
Jonathan House / Pamplin Media Group
Chris Sullivan and Preston Harris of Forest Grove are good friends. Both played basketball last Saturday in a Unified Special Olympics event in Beaverton.
Rummaging into lunch Saturday at Beaverton’s Five Oaks Middle School after a Special Olympics basketball game of three-on-three, Preston Harris, 12, eyed his friend Chris Sullivan’s bag of potato chips with a playful smile.
“No, those are mine,” said Sullivan, giggling from across the table. The boys play basketball and go to Forest Grove’s Tom McCall Upper Elementary School together, despite Chris being born with Down syndrome.
Both joined the Unified Special Olympics basketball team last January when the season began. The squad comprises 10 volunteer peer partners and 12 Special Olympics athletes, all roughly the same age and from the same schools.
Students from Tom McCall and Joseph Gale Elementary, also in Forest Grove, invited students from Beaverton and Hillsboro to attend Saturday’s jamboree. All together, nearly 100 people attended, including dozens of volunteers and Special Olympians.
When the team rosters opened up, dozens of kids from Forest Grove schools volunteered. So many, in fact, that some were turned down, according to volunteer coach Susan Dieter, an adapted PE specialist. Dieter works with children at multiple schools and may visit six different schools each day in the district. She also volunteers with Joseph Gale special education teacher Jill Hertel to coach the two Forest Grove teams.
Sharing hugs
Displaying a toothy smile, Sullivan unsealed his bag of chips and munched quietly as sweat accumulated on his brow.
Minutes before, he and Harris had shared the ball – and hugs – after each other’s attempts at the hoop.
Harris’s mother, Claudette Harris, smiled as the boys hugged after Preston scored with a lay-up.
“He’s done really well,” she said. “He doesn’t hog the ball and really enjoys playing.”
Harris’s other son, Austin, is a 16-year-old junior at Forest Grove High School, a swimmer and a lover of clay art. He also is affected by Fragile X Syndrome, an inherited mental impairment that affects cognitive and physical abilities.
Often associated with autism and severe cognitive disabilities, Fragile X, also known as Martin-Bell Syndrome, is the most commonly known single gene cause of autism, according to the National Fragile X Foundation. Austin attended the jamboree as a volunteer, cheering for his brother from the sidelines.
“He’s never been limited from a medical standpoint,” Harris said. Her other three children were not born with the condition.
Same level
Sponsored by the Beaverton Schools Special Olympics Basketball Program, the weekend jamboree matched traditional Special Olympics athletes with peer partners for morning and afternoon games.
In the end, everyone received an award.
“Whether playing with a parent or sibling, classmate or friend, many of our athletes can learn to be active and independent,” Hertel noted. “The games were to encourage skills and knowledge that can be transferred to school recess, the home driveway or neighborhood.”
As the scrimmages ended and players shuffled out into the cafeteria, Dieter noted that many of the children were tired.
“We should have made it a half day,” she said with a smile.
Not unwearied herself, Dieter pointed out her child, Anna, a busy toddler who, at 15 months, can control a full-size basketball and run with wobbly ease.
For at least 10 years, Forest Grove School District leaders have maintained the idea that special education is an ongoing service, rather than a designated room for children with special needs, Hertel noted. Together, children with and without disabilities grow and thrive in the classroom.
In high school, classes like science and history may progress too quickly for some disabled teens, so the school district provides adult aides and alternative classes to redirect learning – producing tangible results that students can use once they graduate.
“You learn through the course of your education that everyone brings their own strengths to the class and that everyone has something going on,” Harris said.
Forest Grove High School also offers life-skills classes to teach disabled teens how to go shopping, ride public transportation and manage money.
“It has been a blessing for Austin – and it’s a really great place to have ended up,” his mother said.
Stigma free
Free of the stigmas, projections and prejudices that can arise when youngsters don’t understand others’ disabilities, the jamboree was a big success with parents, siblings and Special Olympians.
“Seeing parents watch their kids be a part of something and watching the kids see their friends succeed is really awesome,” Hertel said.
Dieter often reminds the college students who visit her classes for real-life practice to resist asking about conditions her students may have.
“If you get too hung up on what they have,” she pointed out, “you forget that they are just kids.”
I Got to Meet the Baby
I mentioned in a couple of past posts about a coworker of my husbands who had a daughter with down syndrome this year. (You can view the posts here and here) Saturday night was their company Christmas party and I finally got to meet this beautiful baby.
She is gorgeous!! She has the cutest puffy cheekies. They just make you want to snuggle her. She has a big beautiful smile too.
I couldn’t help but notice similarities between her and Matt & Rachel. Down Syndrome and Fragile X Syndrome may be two totally different types of genetic disorders but they do share some behavioral similarities.
I noticed how adamant she was to fight sleep. She had the exact same motions and reactions. It was too cute. She didn’t cry and my babies didn’t either. It was more fussing than crying.
She had the largest, cutest smile. My babies used to share that exact same giant toothless grin and their eyes w
ould just light up.
Oh, and the baby and my kids share the same 1st physical therapist! Her name is Heather and she is the bomb! She is such a sweet woman. I was really excited that they were assigned her.
I could probably go on but I need to get my final papers done to turn into English tomorrow. But it was neat to finally meet her. I noticed instantly that the baby was one lucky girl to get the parent’s that she did. 
The Music In Me
This looks pretty cool!! I wonder if it will come to the states? 
The Music In Me
(Documentary – Australia) Produced by Anne Kenyon. Directed, edited by Nigel Traill.
Posted: Tue., Jul. 10, 2007, 6:41pm PT
By LISA NESSELSON
A portrait of sheer human decency in the face of adversity, “The Music in Me” profiles a dance group for physically and mentally disabled individuals in suburban Sydney. Nigel Traill, who directed, lensed and edited, has fashioned an intelligent, enormously affecting ode to raised expectations for people with disabilities. There’s not a condescending or saccharine frame in docu’s mix of daily drudgery and showbiz glitz, as it follows the six-week countdown to a rousing gala performance. It’s hard to imagine a halfway thoughtful TV programmer — or audience — that wouldn’t warm to the heartache and triumph captured here.
Frank, probing doc, which won the Pierre Salinger docu prize at its world preem in Avignon, reveals the demands of caring for a disabled family member, while depicting the challenges and rewards of artistic expression made possible by the 28-year-old nonprofit Merry Makers.
Down syndrome, Fragile X, autism and cerebral palsy are among the conditions evinced by Merry Makers’ 50 members, who dance and rehearse every Saturday with 15 able-bodied helpers scattered among them.
Talking-head interviews home in on the moment each parent or caregiver discovered their child had a major disability. The mix of initial sorrow and daily gumption is treated with matter-of-fact finesse.
In the 1970s, the late Rosemary Marriott had the idea that mentally handicapped children might respond favorably to music. Vintage footage of Rosemary and her charges in action is a delight.
Lovely young choreographer Lucinda Bryant, who helped out from the age of 12, inherited the job of putting the Merry Makers through their paces while she was still a teenager. Now 30, she’s an understanding but demanding taskmaster.
Lucinda’s mother, Janet Macfarlane, handles administrative duties for the group. Human billboards for the rewards of helping those less fortunate than oneself, mother and daughter are selfless and enthusiastic without a micron of pretension.
Distilled from some 100 hours of footage, docu highlights a few children and their parents, who are accepting and patient despite the unrelenting burden of caring for their charges.
Lovable “Beaver,” a grown man who lives with his mother June, suffers from Fragile X, making him an eternal youngster. Sam, who has Down syndrome, has made great strides according to his mother, Maria. Each Saturday after Merry Makers, Sam dresses up like Lucinda and relives the class. It’s slightly unnerving to watch, yet obviously therapeutic.
Intrepid Aida has two daughters with a degenerative condition and a life expectancy of perhaps 20 years. Merry Makers proves a highlight in both their lives.
Humbling, inspiring pic culminates with a gala featuring prominent singers and a full orchestra. For participants and spectators alike, the Merry Makers, dancing with precision to popular music, are contagious in their pure exuberance.
Camera (HD video), Traill; sound, Tim Little. Reviewed at Avignon Film Festival (competing), June 23, 2007. Running time: 61 MIN.
Watch the abstract and keep your feet in the boat!!
It’s been a long day. I woke up at 3:20 a.m!! I went and did a fishing tournament with my adopted dad. I didn’t catch a darn thing but I managed to fall in the lake, see an otter & a crane (never seen before), and be embarrassed unmercilessly by my pops for falling in the lake and not getting a fish in the boat. We really didn’t do too bad. Or should I say my dad didn’t do too bad. We would up in 7th place. 2 spots shy of getting a money prize but we had fun and lots of memories.
Technically, this weekend I’m not supposed to have the kids. Rachel is out camping with her dad this weekend. She is at the same lake I fished at today. I saw her sitting and playing in the water. She seemed to be having a good time.
I did have Matt though because his grandparents are on vacation. He will go the next two weekends instead. I tried to keep my fishing with grandpa quiet. I told him that I had something to do today and if I got done early I’d come pick him up. He went to work with my husband.
Well, I learned two things from my son. One….you can’t fool Matt. Two….never tell a child with FXS or an autistic child something in the abstract….it has to be concrete. So my hiding my fishing from Matt and my telling him that I’d come get him haunted my husband all day long. The minute he walked in the door of my hubbys work he starting saying the same few sentences over and over for 8 hours…
- “My mommy is going to come get me.”
- “When is my mommy coming”
- “I see the cars and trucks but I don’t see mommy”
- “Mommy is on the lake with Granpa”
- “Mommy is awesome”
My dad and I did not get in soon enough for me to be able to pick him up from work. I got home at 4:03 pm and hubby got off work at 4:00 pm. Matt didn’t like me when he got home. He wouldn’t even walk past me. I hurt his feelings. When I said that I might get him he didn’t grasp that concept. In his mind it meant that I was coming to get him. I never once thought about that, when I said that, even though I know not to do that to these kids. 
There was one positive out of the day though. The father of the baby that was born with down syndrome, that I mentioned in a past post, got to meet Matt. He played ball with him for quite a while. My hubby said he really enjoyed it and I think it helped him see an 11 year old with a disability functioning. It’s not the same disability but it helps to see that kids with disabilities can be happy and function in society too. I think it helps too for him to know someone close by that deals with this daily that he can vent to or ask questions to because after he met Matt him and my hubby talked a while about their disabilities and stuff.
So, I’m exhausted now and going to go put my yawning boy to bed and head there myself. At least he likes me now!! He finally admitted that he missed me (though it just made me feel guiltier (sp??)).
