Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

Upcoming Sibling Events

For more information, please see the flyer Download MISIBS Planning Meeting Flyer 5-14-13

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MISIBS exists to provide adult siblings of individuals with disabilities with the information, resources and support to advocate with and/or for their brothers and sisters and to promote leadership roles of siblings within the disability community.

Advocacy begins by being well informed about a situation that requires change. It also requires identifying people in power to effect change. Effective advocates are passionate in their belief that advocacy can be accomplished indirectly and directly on many levels with brothers and sisters. Each local sibling group can offer assistance with advocacy through local Arc chapters and can connect people to other siblings locally  who may be able to offer advice and assistance when necessary.

TSA Policies Are So Confusing It’s No Wonder A 3-Year-Old In A Wheelchair Gets Upset During Screening

Excerpt from: Consumerist (click for full article)

 

The Transportation Security Administration is doing some quick apologizing after an incident that left a 3-year-old girl upset and crying when her parents were told she’d need to submit to a pat-down. The toddler has spina bifida and had reportedly already gone through security at Lambert- St. Louis International Airport, when her mom captured what appears to be TSA agents attempting to touch the tearful girl.

The mom posted the video on YouTube recently, where it shows the family interacting with screeners who don’t want any video to be taken. The little girl cries in her wheelchair while one of her sisters kneels next to her and says at one point, “I don’t want to go to Disney World.”

At first, the screener said the girl would need a pat-down, but the TSA tells the St. Louis Post-Dispatch says that a pat-down isn’t what a screener should do and that the mention of one was “confusing.” It’s also legal to film the process, as long as doing so doesn’t interfere with the procedure.

The situation escalated, her dad says, mostly because the little girl could feel the tension among the adults. In the end, her father carried her through the metal detector while the TSA swabbed the chair.

TSA Apologizes For Disability Screening Debacle

Excerpt from: Disability Scoop (click for full article)

 

The Transportation Security Administration is apologizing after a 3-year-old in a wheelchair was told she would receive a pat-down by agents.

The incident earlier this month at the St. Louis airport sparked an outcry online after the girl’s parents posted a video on YouTube documenting their experience. The post has been viewed nearly 250,000 times.

The family was headed to Disney World in Orlando, Fla. when they were pulled aside by TSA agents, who indicated that they would pat down the girl named Lucy.

In the video, Lucy is seen crying. TSA agents are heard telling her mother that it is illegal to tape such interactions, which agency officials now say is not true.

Eventually, agents decided not to pat down the child.

Author Monica Wood On Her Developmentally Disabled Sister

Excerpt from: Huffington Post (click for full article)

 

She's right. It's hard on Betty Wood. Her grief is deep and old and full of memory. We make a tiny trellis out of sticks to hang on the Christmas tree. Ten times a day, Betty checks to make sure it's still there. We walk through the layering snow, her bony, mittened hand in mine. I say to her quietly, "Betty Wood lives in the woods."

She stops, shakes her bird-fluff head, looks into the unseeable distance, her smile wistful, and there it is again -- that glimpse of her what-if life, the brilliant "normal" life she might have lived.

But what of this life? What do I think I'm seeing, at these moments, that doesn't already exist? This is Betty: here, now, her eyes filled with sympathy and understanding. And yes, a kind of brilliance. The intellectual chasm between us divides, and I'm on the wrong side. From here, she looks like the kindly, durable person she has always been: the big sister shoring up in sorrow, charging ahead to the unknown and unknowable, showing her little sister how it's done.

New Opportunity for NJ School Children with Disabilities

Excerpt from: New Jersey 101.5 (click for full article)

 

Children with disabilities should have the same opportunities as those who don’t and here in New Jersey, they will under a 12-week pilot program that will bring the Get FIT program into the school setting, granting disabled students the opportunity to participate in traditional school athletic teams or create parallel athletic programs.

The ESC School at West Amwell in Lambertville will be the first in New Jersey to test the program.

The Family Resource Network (FRN) and its Get FIT program have long advocated for fitness and nutrition opportunities for individuals with disabilities and their caregivers.

They have launched programs which include Get FIT@Home, Get FIT@YMCA and Get FIT@Gym in New Jersey, Texas, Mississippi and Maryland.  Get FIT@School was created in recognition of the 38 percent higher rate of obesity in children with disabilities.

How To Get Fussy Kids To Eat Good Food

Excerpt from: About.com (click for full article)

 

Yes, for sure it's not an easy task that we're faced with as parents. It doesn't matter how nutritionally aware we as parents and how much knowledge we possess about what our children should be eating. Coping with a fussy eater and ensuring your child gets appropriate nutrition isn't easy - - especially if you have a very thin child, on the verge of becoming underweight. Further, children with sensory disabilities, oral motor problems, and food allergies make ensuring good nutrition even more of a challenge.  These tips can help!

Study: Eating Troubles Putting Kids With Autism At Risk

Excerpt from: Disability Scoop (click for full article)

 

Kids with autism are five times more likely than other children to experience food-related problems ranging from mealtime tantrums to extreme pickiness, issues with potentially long-term health consequences, researchers say.

Though many parents have long indicated concerns about the eating habits of their children with autism, a new analysis of existing research on the issue is believed to offer the first comprehensive look. In the review of 17 studies, researchers at Emory University and the Marcus Autism Center found that kids with the developmental disorder face serious risks of feeding and nutrition problems.

In addition to being pickier eaters, kids with autism often have mealtime rituals and other extreme behaviors surrounding feeding, the study found. What’s more, they have lower intake of calcium and protein and more overall nutritional deficits than other children, the researchers report this month in the Journal of Autism and Developmental Disorders.

In First, Sesame Street Goes Sensory Friendly

Excerpt from: Disability Scoop (click for full article)

 

First it was the movies, then Broadway. Now, Sesame Street Live will do a performance designed to meet the special needs of those with autism and other disabilities.

The show Friday night at the Fox Theatre in Detroit will not be altered, but will feature several accommodations for the audience. Organizers say they are providing parents with production notes in advance so that kids can be prepared. What’s more, there will be quiet areas at the venue for anyone needing a break during the performance and extra space will be offered in the seating areas so that audience members can move around.

The performance of Sesame Street Live “Elmo Makes Music” will be the first to offer an autism-friendly experience, but those behind the show hope to do more, according to Tom Riopelle, Midwest regional director at Autism Speaks, who helped organize the event.

Family Inc.

Excerpt from: The Wall Street Journal (click for full article)

 

A key finding of positive psychology is that happiness depends in large measure on relationships. Our families are our primary relationships, yet we spend almost no time trying to improve them. As Eleanor Starr told me in Idaho, "You have your job, you work on that. Your have your garden, your hobbies, you work on those. Your family requires just as much work, if not more."

Today, we have more knowledge than ever before to help make that work easier, much of it from America's leading organizations. The task for parents is to find time to implement it. As Harvard psychologist Tal Ben-Shahar wrote in his book "Happier": "There is one easy step to unhappiness—doing nothing." The opposite also holds: The easiest path to happiness is to do something. In the end, this may be the most enduring lesson of all. What's the secret to a happy family?

 

Terrific Tips for Fine Motor Skills

Excerpt from: My Special Needs Network (click for full article)

 

This week I will have the great honor to be presenting at the Virginia Association for Early Childhood Education (VAECE) Conference  on 10 Terrific Tips to Promote Fine Motor Skills.  The conference agenda is packed full of key thought leaders and I look forward to attending and speaking.  Just as a sneak peak here are 3 of the 10 Tips from my session:

1. Allow for plenty of tummy time!  We all know babies, toddler and all kids aren’t getting enough of this prone position these days!  Check out Why Tummy Time Matters by Dr. Anne Zachry for more info.
2. Add more visual tracking games. Seems toddlers and young children move so quickly these days to looking at books and/or smart tables/computers.  Spend some time with big eye movement games like tracking a balloon or bubbles, playing I Spy with objects around the room, or seeing how fast children can locate and point to a flashlight spot in a semi- darkened room.
3. Vary the use of media to practice drawing shapes and letter formations. Try Wikki Stix, finger paints mixed with dry gelatin mix (when the artwork dries you have a “scratch and sniff” painting!)  Squiggle Pens and other sensory tools.