Archive for the ‘ Cerebral Palsy ’ Category

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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Not So Different: A New Anthem for Autism

Wednesday, April 2nd, 2014

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

Today is World Autism Awareness Day and what better way to convey a powerful message of awareness and hope than through song. That is exactly what Cassandra Kubinski’s song, “Not So Different” does – a song written to “foster acceptance and understanding.” When Kubinski was approached by her friend, Vanessa Ticona – the mother of two autistic sons, and asked to write a song for an autism charity walk, Kubinski agreed “knowing it was a way to use the healing power of music to contribute to the cause.”

Unfamiliar with autism Kubinski drew inspiration for the lyrics from an aunt with whom she shared an emotional connection. Kubinski’s aunt had an intellectual disability. “My aunt had these interesting quirks,” said Kubinski. “As a writer, it was important that the words made sense to people within the community.” And so, in addition to writing from personal experience, Kubinski spoke at length with autism parents – including her friend, Vanessa. The more Kubinski learned, she was able to see the parallels between her aunt and autism. While each parents experience was different, “the common factor,” Kubinski learned was that each parent spoke of their child’s unique “way to express themselves.”

“Not So Different” will resonate with autism parents and educators. And it’s a song easy for enough for children with autism to sing and embrace as their own personal anthem.

However, “Not So Different” isn’t just a song exclusive to the autism community, Kubinski hopes the message will make a much bigger impact as “…it’s about understanding that everyone wants the same things: to love and be loved without being judged or changed.”

“Not So Different” is available for download here, sales will benefit autism organizations.

Cassandra Kubinski, singer/song writer “Not So Different”

For more on Cassandra Kubinski’s and my thoughts on “Not So Different” – check out the latest post on my blog: An Inspiring Song by Cassandra Kubinski to Raise Autism Awareness

 Find cool activities to beat boredom here.

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

Other autism related posts on Atypical Familia:

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Helping Family Understand Autism

Wednesday, March 19th, 2014

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

I didn’t know anything about autism when my son, Norrin, was first diagnosed. Many friends and family dismissed my concerns and tried to assure me that Norrin was “just fine.” Autism is an invisible disability and it’s hard trying to make sense of something you can’t see. For a long time time after Norrin’s autism diagnosis, I had a tough time trying to get my loved ones to understand – including my mother. Over the years my mom has learned to understand autism and become one of Norrin’s fiercest advocates.

The April issue of Parents magazine is dedicated to Life in a Special Needs World. And family plays a huge part in the life of a special needs child and their parents.

While there are some in my family who still don’t understand Norrin’s autism, there are many that do. And I realized that in order for my family to truly understand autism, they needed to be involved. Here are 3 ways to include family and friends to help them better understand your child:

Bring them to an IEP meeting. No one should have to attend an IEP alone. The IEP meeting is open to anyone who knows and loves your child. Invite a friend or family member – they don’t have to say anything or even be familiar with special education. They just have to be there next to you. Let them experience a moment in your special needs life.

Let them sit in on a therapy session. The next time your child has an therapy session, have your friend or family come over. They don’t have to participate or assist – they just have to observe. Let them see what your child is like, how hard they work and what they are capable of doing.

Be completely honest. As special needs parents, we celebrate every achievement. Every milestone matters and we want to brag about our kids. But if you want your family to really understand, you need to go beyond the highlight reel. You need to share the tough stuff too.

From my other blog:

For more ways to help friends understand Autism, download Autism Speaks Family Support Tool Kit.

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

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A Special Couple Fosters Six Children With Special Needs

Tuesday, March 11th, 2014

“Do you ever get tired of hearing people ask you how you do it?” another special needs mom recently asked me. I do, but I also know that people don’t necessarily mean anything negative by it. They’re genuinely wondering how, as a working mom of two kids including one with special needs, I manage to juggle it all. That’s exactly what I wondered about an extraordinary couple I recently read about.

There are 11,000 children in state custody in Oklahoma. The 100 of them who have special needs are least likely to find home, and typically end up living in long-term hospitals or residential facilities. Misty Marksberry and partner Laura Merideth adopted one of those children, a little girl with a seizure disorder name Anastayja. Last December, she died. “Before she passed we promised her that her legacy would continue and that we would forever take care of kids like her,” Marksberry said.

And so they have, as recently reported by Fox 25 News. The couple went through special medical training, named their home Annie’s House and now foster six children, all of whom have intensive special needs. Marksberry stays home to care for them; she has even sewn feeding tubes onto dolls, so the children can see dolls who are like them. The couple are planning to adopt four-year-old Zamaria, who was epilepsy, cerebral palsy, and medical issues. They plan to adopt all the kids they foster if their parents no longer have rights. And they would like to expand Annie’s House, moving into a larger home with more space and getting a van to fit lots of wheelchairs and equipment.

Kids with special needs thrive in a home in a family-like setting, experts agree. This couple is giving these children a chance at life. As Marksberry said, “We want to give them every opportunity to be a child like any other.”

If you’d like donate to Annie’s House, click here.

From my other blog:

20 reasons to respect my child with special needs

A trend that will change our kids’ future: 3D printing

Disability rip-offs: You want me to pay 30 bucks for a spoon?

 

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

Image: Screen grab/Fox 25 video

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