Archive for the ‘ Cerebral Palsy ’ Category

Meet The Robot That Could Be Your Child’s Future Butler

Tuesday, June 17th, 2014

Imagine this: Your child wakes up. Because of his physical challenges, he can’t make his own breakfast, but that’s not a problem. Because HERB (Home Exploring Robot Butler) does it for him, setting a kettle of water to boil on the stove, pouring orange juice and then stirring up oatmeal.

HERB has been in development for more than five years at Carnegie Mellon’s Robotics Institute, part of the Quality of Life Technology Center (QofLT). HERB is an exciting advance in the growing field of technology to help people with disabilities with manipulation and mobility. For my son, who has cerebral palsy, reaching up to a kitchen cabinet to get a cup is a near impossible task, ditto for grasping a remote control and pressing buttons. So robots like HERB are his future. As an article for CyberTherapy & Rehabilitation Magazine notes, HERB will provide assistance with meal prep, unpacking and storing groceries, cleaning dishes, light housework and organizing clutter. Down the road, HERB may help with transferring a person with disability from a wheelchair to a seat or helping someone after a fall. This is all accomplished via a range of sensors and advanced computer algorithm programming. You can see HERB in action in this video, along with a different robot in development:

Another robot with a less charming name, PerMMA (Personal Mobility and Manipulation Appliance), has been in the works since 2006 at QofLT. It’s basically a smart powered wheelchair with two dexterous robotic arms. Here’s PerMMA on a shopping trip:

HERB continues to make progress; he’s now figured out how to discover more than 100 home objects including items like foods and plants. Recognizing items based on vision alone in homes, which are filled with countless objects, is a major accomplishment. Not surprisingly, HERB snagged the Most Innovative Technology award at last year’s Robot Film Festival.

These robots aren’t yet available for sale and if they were, they’d most likely cost a bazillion dollars. But it seems very possible that they will inhabit homes in the near future and, as is this case with any new technology, be available (even rentable!) at a reasonable cost. In my son’s 11 years, I’ve already seen his world open up because of technology, thanks to his Proloquo2Go iPad speech app. I’m so, so excited for the assistance the future will bring.

From my other blog:

A thank you to Steve Jobs from a special needs mom

Why we can’t do the morning rush at our house

Max speaks his best sentence ever


Image of HERB via Carnegie Mellon’s The Robotics Institute

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A Kid Carries His Brother With Cerebral Palsy For 40 Miles

Wednesday, June 4th, 2014

Like many older siblings, Hunter Gandee, 14, likes to give his little brother piggyback rides. Over the years Hunter has carried Braden, 7, to the grocery store, on beaches and even up mountains. He does it for love, he does it for fun and he does it because Braden has cerebral palsy. Braden uses a walker to get around, but it doesn’t move easily on sand, mulch, grass or snow, or in crowded areas.

This Saturday, at 7. am., Hunter is going to start carrying Braden around—and he’s going to do it for 40 miles, to raise awareness about CP. The boys are calling their walk The Cerebral Palsy Swagger. They’ll leave from Bedford Junior High School in Temperance, Michigan, where Hunter is in eighth grade and the captain of his wrestling team. They’ll be accompanied by volunteers as parents Danielle and Sam drive ahead of them. The family will stop overnight in the town of Milan, and are planning to arrive at around 2:00 p.m. at the Bahna Wrestling Center at the University of Michigan in Ann Arbor.

Hunter got the idea for the walk after he roped in students to sell green Cerebral Palsy awareness wristbands for a dollar each, back in March; they raised $350 for the Cerebral Palsy Research Consortium of Michigan. “Hunter began to wonder how he could reach more people,” Danielle recalls. “A few days later, I had a dream about Hunter carrying Braden to Mackinaw City. We talked about it, decided that Mackinaw was not an option with our busy summer schedule, but agreed that the University of Michigan would be perfect! Braden has participated in studies there and received therapies there, Hunter plans on attending college there, it is a reasonable distance and we just love U of M! And so it all began.”

She acknowledges that carrying Hunter for 40 miles is a “challenge”—Hunter is in great physical shape but Braden is a good 54 pounds. Still, she continues, “it is meant to be difficult, exhausting but not impossible, the same as it is with Braden every day.”

Hunter is driven by a desire to help people get to know Braden—a goal I completely relate to as the mom of a child with CP. People often tend to see Max’s disabilities over his abilities, and it’s up to our family to help them meet the child behind the cerebral Palsy. Hunter is similarly determined, says his mom, “for people to see Braden’s strengths and value his abilities, but also become aware of his challenges and to see that a large part of what limits Braden is the inefficient equipment available today. He wants people to meet Braden, care for him, remember him and develop a desire to help him. Help by creating truly accessible public buildings, schools, playgrounds and mobility aids and equipment that are stylish, fun and work on all kinds of terrain.”

Danielle and her husband have two other children, and describe the relationship of all their kids as “typical.” As she says, “The fight sometimes, pick on each other, intentionally annoy each other, but they are also all best friends. Hunter makes sure Braden does his work. He doesn’t let him slack—he pushes him to be his best.”

Braden can’t wait to get going. He says, “I am excited about the walk, very very excited! I am happy I get to meet all the new people. The band is gonna play at Hunter’s school. And I am very excited to go to the University of Michigan and see the wrestlers! I might even get Kilwins Fudge! And I get to spend so much time hanging out with Hunter. I love my brother. He is Superman!”

He has no worries about the distance. “I like to be on his back,” says Braden. “I don’t have to get tired and he is very fast!”

They say you can’t know a person’s situation until you’ve walked a mile in their shoes. In walking forty miles, Hunter is going to help a whole lot of people better understand Braden’s world. Happy trails, boys.

You can follow the Cerebral Palsy Swagger on Facebook and Twitter.

Life with Cerebral Palsy
Life with Cerebral Palsy
Life with Cerebral Palsy

From my other blog:

The kindness of a neighbor that I will never forget

A note to the mom who stared at my child

10 things I didn’t know about cerebral palsy—until I had a kid with cerebral palsy


Images: Courtesy of Danielle Gandee




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Should Special Needs Moms Have Their Own Mother’s Day?

Wednesday, May 7th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

With Mother’s Day approaching and Father’s Day next month, I am reminded of something my friend, Jessica, posted on Facebook. Jessica was having one of those up-and-down days only a special needs parent can understand. The mom of three kids, Jessica’s 9 year-old son has autism.

As I direct my son to pick up his chewed up and spit out pretzels from around the house for the umpteenth time today and have my sleeve tugged on yet again before I prompt him to tap and say excuse me, and hold him tightly to get him to stop hitting his own head, and then bathe in the sweetness of his beautiful smile when he tries to climb his 9 year old sized body into my arms, I do believe there needs to be a mother’s day specifically for moms of kids of special needs. Yes…parenting all kids is challenging. But sorry folks, on a day to day kind of level, it’s just not the same thing.

I don’t like to play the “hardship olympics.” But when I think about all the ways parenting a child with special needs is different…it makes my head spin. At the same time, I am still a mother and I’m celebrated on Mother’s Day.

I reached out to other special needs moms for their thoughts on whether or not special needs parents deserve their own day. Here’s what they had to say:

…Sometimes you feel like no one in your life acknowledges how much extra effort you have to put into everything, how much has been handed to you that you’re not able to do, and all the additional worries you have about your child’s future. It would be nice to have a day set aside to acknowledge that just once. [But] I don’t want my kids to feel that their differences are a reason we should be singled out as a family, whether it’s them or me. I am still trying to learn how to walk the fine line of celebrating what makes us unique and not focusing too much on what makes us different. — Jessica, Don’t Mind the Mess

I have mixed feelings on this. I do think we deserve props for all that we do as special needs parents–and we do a LOT. And then some! But I hesitate because there are times when I feel a gap between me and parents of typically-developing kids, and I’m not sure I’d like to further distinguish ourselves. One thing’s for sure: Our families should totally kiss up to us on Mother’s Day–and Father’s Day too! — Ellen, Love That Max

Being a mother to children with and without special needs, I definitely believe we deserve a day of our own. As a special needs parent you are faced with so many obstacles. A simple trip to the local park requires special planning and strategizing. A special needs parent has very little ”me” time. I think it would be great if there were a day to celebrate our hard work and accomplishments. — Lizette, Diary of a Loving Mom

I do not think it is necessary. We already have a general mother’s and father’s day. Let us continue to celebrate [special needs parents] in our own unique ways. There is really no need to have separate days. Right now my son can’t tell me I love you or Happy Mother’s Day, so I have to think outside the box on Mother’s day and remember that he loves me regardless. – Kpana, Sailing Autistic Seas

Whether or not you agree, this Mother’s Day (and Father’s Day), be extra nice to the special needs parent in your life. April was Autism Acceptance month – a time to raise awareness and acceptance for individuals with autism. Special needs parents need acceptance too. Just like we celebrate our kids for all that they do, sometimes special needs parents require the same recognition from their family and friends.

From my other blog:

Tell mom you love her this Mother’s Day with an “I Love You” bookmark.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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What Would Improve Your Life As A Special Needs Family?

Thursday, April 17th, 2014

A couple of weeks ago, I was in Ireland for the launch of the Upsee, the new mobility device for kids. It’s gotten a ton of attention all around the world, with so many parents excited about its possibilities. Made by Leckey, a company that makes positioning equipment for children with disabilities, the Upsee is part of the company’s new Firefly division; it specializes in products that improve the lives of families. The Upsee is selling for $489, including shipping.

The bloggers in attendance met owner James Leckey, who is passionate about changing the lives of kids with special needs. He asked us about products that would improve the lives of special needs families. I mentioned an inexpensive, collapsable stroller for older kids that looked cool. We ran into a challenge when we visited Disneyland in December; Max no longer fit into the strollers, and we had to get a wheelchair for those times when he got too tired to walk around.

So, I’m throwing the question out to you: What would make your family life better? Share anything at all, whether it’s more funding for respite, improved access in public transportation, new products or basically anything. Feel free to list as many ideas as you’d like.

Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs

From my other blog:

A look at the Upsee—and your chance to win one 


Image of child in Upsee via Firefly

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Best Kept Secret: When Kids With Autism Grow Up And Age Out

Wednesday, April 9th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

My son, Norrin, is eight years old and I try my best to focus on where he is now rather than worry about the future. But if it’s one thing I’ve learned about motherhood is that the years fly by. Eventually Norrin will age out and the special education “safety net” will be lifted. I feel lucky that Norrin’s school goes up to 21 years old but then what? Will he be able to get a job or live independently? Will he have the tools to face the world as an autistic young man?

Those are the questions the critically acclaimed documentary, Best Kept Secret tackles.

At JFK High School, located in the midst of a run-down area in Newark, New Jersey’s largest city, administrators answer the phone by saying, “You’ve reached John F. Kennedy High School, Newark’s Best Kept Secret.” And indeed, it is. JFK is a school for all types of students with special education needs, ranging from those on the autism spectrum to those with multiple disabilities.

Janet Mino has taught her class of six young autistic men for 4 years. They must graduate from JFK in the spring of 2012. The clock is ticking to find them a place in the adult world – a job or rare placement in a recreational center – so they do not end up where their predecessors have, sitting at home, institutionalized, or on the streets.

Last night I had the opportunity to hear Janet Mino speak at an autism parents support group. I was inspired by her devotion and wished that there were more educators with her mindset. One of the things she said that really resonated with me was about communication. Everyone can communicate, even if they are non-verbal – their behaviors are how they communicate. We have to take the time and figure out what they are trying to say. A tough love kind of teacher, Mino strives to teach her students to live without being prompt dependent, urging parents and caregivers to do the same. “It’s a harsh world. We must prepare our kids to face it.”

It’s autism awareness month and magazines and media share the stories of children with autism. Like any other kid, children with autism grow up. Services and resources are critical at every age but as autistic individuals grow up, the resources and services dwindle down; options are extremely limited. Those are the stories that need to be heard too.  In a interview with Kpana Kpoto, Mino advises, “Even after 21, still find ways to build them up. They need support. Plan early.  In order for parents to plan early, we need to be prepared and know what to plan for. Best Kept Secret sheds light on the things parents need to know. It’s a must see for any parent or caregiver of an autistic child and for teachers wanting to better communicate with their special needs students.

Have you seen Best Kept Secret yet? If not, it’s available for download on iTunes (for personal use) and on the Academic Video Store (for educational use).

From my other blog:

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