Tips Parenting

Rick Guidotti spent years surrounded by conventional beauty ideals. He worked as a fashion photographer, shooting all over the world for companies like L’Oreal, Revlon and Yves Saint Laurent. But one day, his outlook changed. He spotted a girl with albinism on the street and was struck by her beauty. When he researched the genetic syndrome in medical textbooks, he was put off by the dehumanizing images he saw. So in 1997 he started Positive Exposure, an arts organization that works with individuals living with genetic difference. Now, he works full time photographing and advocating for children with genetic syndromes.

BLOOM: How are the visual stories you tell about these children different?

Rick Guidotti: The images…that I was force-fed when I first started Positive Exposure were images that are typically used in medical textbooks: pictures of kids up against walls in doctors’ offices with a black bar across their eyes, pretty much being portrayed as a disease as opposed to a kid.

I understood the importance of these images to show health-care providers how a condition presents itself, but nobody ever looks like that! I thought, “There has to be another way that we can present the same information in a photographic image but add another quality.”

That quality we add is humanity.

BLOOM: How did you learn to see beauty differently?

Rick Guidotti: That’s something where I don’t fully understand what happened. Walking down Park Avenue I saw a kid waiting for a bus and she was beautiful. She had albinism, so was never included in (the) beauty standard. I realized instantly that there was so much more beauty out there. What terrified me was I wondered how many months I’d walked past that girl and didn’t see her.

BLOOM: Had you worked with people with physical differences before Positive Exposure?

Rick Guidotti: No! As a fashion photographer, not at all. I never even knew anybody with a genetic syndrome in my life!

BLOOM: How can Positive Exposure’s images help to fight our fixations with beauty ideals?

Rick Guidotti: By giving people permission to see beauty and to interpret beauty in their own right. Not to see a beauty that’s dictated by industry’s ideas of what’s acceptable, but to judge for yourself. This is not inner beauty. I don’t believe in that. I’m as shallow as it gets. These kids are gorgeous, we’re just not allowed to see it. But these images give us the freedom to see it and it changes everything.

BLOOM: Have you noticed a difference in kids after they see their photos?

Rick Guidotti: Oh my, across the board! I first started off with a girl named Christina with albinism who had been teased her whole life for her difference. Even though she was stunning, gorgeous, she walked in with her shoulders hunched, her head down, no eye contact. She had zero self-esteem. But then photographing her and showing her her magnificence, like “Look at yourself!” I watched her just transform in front of the lens. And it happens every time.

BLOOM: Why is it important for people to see these images?

Rick Guidotti: I can shoot photos of a kid in my studio and they can see they are amazing. But by the time they leave the studio and make their way down Park Avenue, five people stare at their wheelchair or their birthmark, or somebody whispers or giggles or points or looks away. Their empowerment breaks down immediately. We realized that what we need to create are opportunities to make the idea of celebrating (diversity) relevant to the public at large.

It’s so important to bring these images to the public in many different ways, so that people have opportunities to really approach them. Because once you approach these images, you’re no longer afraid to look at them. You reach out, not because somebody has a difference, but for humanity, to a person. The fear is broken down.

Interview by Megan Jones. Full story in the July issue of BLOOM. Rick calls the photo above: The Amazing Pauline!

I have a wonderful Ryerson journalism student working on BLOOM this summer. Her name is Megan Jones. Here's a piece she did on the benefits of video games for children with cerebral palsy. The image left shows a child's skeleton while playing Wii tennis, as captured by a motion tracking system. This allows scientists to calculate to what extent the wrist, elbow and shoulder were used during the game.

Hey kids -- get mom to read this!
By Megan Jones

Active video games like Wii Fit may have physical benefits that play a role in rehab for kids with cerebral palsy, according to a study published online in the Archives of Physical Medicine and Rehabilitation.

Seventeen children participated in the pilot study, and were observed as they played four games: Wii Bowling, Wii Tennis, Wii Boxing and Dance Dance Revolution. During play, researchers monitored and documented the kids’ motion, energy and level of muscular activity. After playing the games, participants filled out a survey about their level of enjoyment.

Researchers used this data to evaluate the potential therapeutic benefits of the video games. They found that while the games couldn’t replace more vigorous or formal exercise, they were effective in providing enjoyable therapy focused on specific joints and movements.

In children with one-sided weakness for example, Wii Fit acted as a fun way to exercise and strengthen weaker limbs. The games also relied heavily on fast wrist movements. Many children with cerebral palsy have difficulty extending their wrists, and continuous, quick, wrist muscle use could help to improve this.

Elaine Biddiss, a scientist at Holland Bloorview and the study’s lead investigator, says it's worth looking at the role of technology in rehab because it can help to engage children. She believes video games in particular can improve kids’ participation.

“Video games incorporate a lot of the characteristics we would like to see in physical therapy and motor- learning programs,” Elaine says.

“Kids are rewarded with points, there’s feedback provided so they see how well they’re doing in the games, and you can change the level of difficulty.”

Most importantly, Elaine says, children have fun.

“It’s something that kids would be willing to do in the home, whereas practising traditional exercises might be laborious,” she explains.

Although the study’s findings were promising, Elaine says that using the Wii system did present the team with challenges.

Some children found ways to “cheat,” as the sensor in the Wii remote couldn’t tell the difference between a small wrist flick and a full arm movement. Kids sometimes made smaller movements, using less physical effort, but still achieved success in the games.

As a result, Elaine recommends that parents monitor their children’s play. She also suggests they encourage kids to put the same degree of movement into the virtual games as they would in real-life sports.

Finally, parents should discuss the way their child is using the system with therapists to ensure that the games are being played therapeutically.

Elaine says she and her current team see the pilot study as a starting point, and she hopes that further research and technological development will lead to more effective gaming systems.

“The Wii is not the tool that’s going to provide the best quality therapy,” she says. “But based on the success of this study, we’re working on developing better games and systems that are targeted towards therapy.”

The team is looking into the use of camera-based systems, which would be harder to cheat with. They're also hoping to design games which would allow therapists to tailor goals for individual children.

“We’re still a ways away, but we’re hoping that these games will maximize the potential of low-cost technology that can be used in the home,” Elaine says.

A few months ago I saw a horrifying video of a student at the Judge Rotenberg Center in Canton, Mass. being given painful electric shocks 31 times.

I could not fathom how a place of education for students with developmental and other disabilities had descended into this barbaric act.

A former teacher's aid at the school has launched a petition to get the practice banned. I've signed and hope you will too.

A few days ago I ran into a parent who had attended Noël Janis-Norton's  Calmer, Easier, Happier Parenting seminar a few years ago. We reminisced and laughed about a memorable question she had asked Noël during the seminar. The issue she was having at that time was that she and her husband always had to carry their 3 year old son down the stairs because he refused to do it on his own.  Whenever they encouraged him to hold the railing and to try taking steps, he sat down and cried until they picked him up and carried him.

In Noël's kind and common sense style, she said,


The mother thought about it for several seconds, shook her head and then sheepishly answered,

"Because we're carrying him?"

As she said it, she and her husband laughed and all the parents in the room laughed as well because everyone there could relate to this scenario. Here's what Noël said:

"Exactly. Whenever parents say something like 'My child refuses to....' or 'My child will only eat....' or 'My child won't....' all it means is that your child is in the habit of those things. He's in the habit of being picked up and carried down the stairs, or he might be in the habit of only eating chicken tenders or maybe he's in the habit of you staying next to him until he falls asleep. And habits can be changed pretty quickly. So instead of thinking of it as something he won't do or can't do, think of it as it's just something he's in the habit of doing at the moment, and you can change it. The most effective way to change habits is by using the Calmer, Easier, Happier Parenting strategies we teach, especially think-throughs, Descriptive Praise and Reflective Listening."

The parents got united and decided to make a new rule that they would no longer carry their son down the stairs but would walk next to him and hold one hand while he held onto the railing with the other. So at a completely neutral time, not right before he was about to go downstairs, the parents told him the new rule and did a think-through with him, asking him to tell them what the new rule was and then having him answer a few questions about what he should do to go down the stairs safely.  They also "Prepared for Success" by anticipating that he would be upset by the new rule and then using Reflective Listening to acknowledge and validate his feelings and to help him move through the upset feelings faster, such as "You might wish we would still carry you since we've been doing that for awhile." 

After doing a few think-throughs about the new rule, he started going down the stairs on his own, and his parents were right there nearby to give him lots of Descriptive Praise for being brave and self-reliant!

Laura Runnels Fleming (see profile below)
Pasadena, CA

Donna Thomson at The Political Caregiver posted this morning on a Ted Talk by fashion photographer Rick Guidotti, who travels the world showing the beauty in difference: From stigma to super model.

It began when Rick started photographing children with albinism, who had been shunned and teased because of their different appearance.

It grew into a project called Positive Exposure, which focuses on children and adults living with genetic conditions. Rick does photo shoots at annual support group conferences for children and adults affected by genetic conditions.

"Each individual living with a genetic difference desires to be viewed first and foremost as a human being," is his message.

I love this!

The organization also goes into public schools to educate students about our common humanity: The Pearls Project.

Chris Rumble, 22, a leukemia patient, filmed fellow patients, doctors and nurses dancing and singing to Kelly Clarkson's "Stronger" in a celebration of resilience at the hematology/oncology unit at Seattle Children's Hospital.

Thanks to Cheryl for sending this gem!

In its December series, The Los Angeles Times found that for autistic children ages 3 to 6 — a critical period for treating the disorder — the Developmental Services department spent an average of $11,723 per child on whites in 2010, compared with $11,063 on Asians, $7,634 on Latinos and $6,593 on blacks.

This just in on the case of the Mississauga parents of a new baby who both have cerebral palsy: Disabled parents allowed to keep newborn son

Says the CBC: "The parents were fighting to keep their child after social workers threatened to take the boy away unless he receives round-the-clock care from an "able-bodied attendant."

We did a story years ago about a single mom with cerebral palsy and limited hand function and her two girls. 'I know that I'm raising really good girls'

I learned a lot interviewing that mom.

Last week when Ben walked into the Kumon waiting room with a volunteer she was all smiles.

“Flawless!” she exlaimed, holding up a book of sums adding 4 that Ben had just finished.

Ben and I grinned and I could imagine his chest filling with pride.

Every child needs to feel successful and I’m grateful that Ben is having this opportunity – even if it’s totally out of whack with the typical learning trajectory of kids.

At the same time, I remind myself that less than a year ago Ben couldn’t even write – much less sit focused and add numbers.

I’m doing a presentation for some medical and research students and I keep coming back to how my conceptions of disability (intellectual and physical) before having my son were wrong. WRONG. WRONG. WRONG. So far off the mark.

And how conventional ways of measuring success can never come close to capturing the complexity, richness and essence of a human being.

Right now Ben is enamored with the Mr. Men series of 49 children’s books. You know – Mr. Greedy, Mr. Brave, Mr. Daydream, Mr. Dizzy, Mr. Bump.

I remember these books as a child. Apparently they were created by British author/illustrator Roger Hargreaves after his son Adam asked: “What does a tickle look like?”

Ben doesn’t want me to read these books with him. He wants to enjoy them himself. There's something about the characters and how their names match their appearance and personalities that Ben finds humorous. Being so petite himself, perhaps he's also drawn to the little square format of the books and the little characters. Who knows, maybe he sees himself as Mr. Ben.

Back to my presentation. We don’t need to make disabled kids ‘normal.’ We need to open people’s minds to see youth with disabilities as full human beings with their own rich worlds.

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In Flippity flop I wrote about how people make split-second judgments about children who have facial features associated with genetic syndromes.

A French study published last month in the journal PLoS One finds that photos of children with Down syndrome elicit less positive attitudes than photos of typically developing children -- particularly if the features are 'strongly typical' of the syndrome.

In addition to asking 165 adults to openly rate photos, the researchers gave participants implicit-association tests, which capture the strength with which certain groups of people are automatically, without conscious awareness, associated with positive or negative attributes.

They found positive explicit evaluations of children with Down syndrome can co-exist with negative associations at an unconscious level, revealing hidden stereotypes.

Given their findings, the researchers say we need to go beyond testing stated attitudes to estimate the true extent of stigmatization of children with Down syndrome.

The group of 165 participants included 55 young adult students, 55 non-student adults and 55 professional caregivers who work with people with intellectual disabilities. In each group of participants -- including that of the caregivers -- photos of children with Down syndrome were automatically associated with a negative trait.

However, while the groups of adult students and non-students were more likely to rate photos of children with strong Down syndrome facial features less positively than those with less distinct features, this stereotyping within the category of Down syndrome was not seen in professional caregivers. "This is consistent with the idea that relationships with intellectually disabled persons promote positive attitudes toward them," the researchers say.

Thank you to Amy Julia Becker for sharing the photo above of daughter Penny, who has Down syndrome, and her brother William. Amy is part of our BLOOM speaker series May 10.

Nacho Doce is a photojournalist with Reuters based in São Paulo, Brazil.

Check out this moving series of photos he took at a local children's rehab clinic.
 
"One thing that left me speechless was that the majority of the children’s companions there were mothers who were alone because either their husbands were at work or had abandoned them and their disabled children," Doce writes.

The Children's Aid Society of Peel has petitioned to have a baby removed from the home of a couple who have cerebral palsy, unless the couple hires a full-time, and in their words, "able-bodied" attendant.

Metro Morning's Matt Galloway spoke with Ryan Machete, who works with the Coalition for Persons with Disabilities in Unfit parents.