Pieter Kark: Neurologist works with people with disabilities for 50+ years

Pieter Kark dedicated his neurology career
to working with people with disabilities

The credentials of Dr. Pieter Kark tend to humble the rest of us. A preeminent neurologist with fifty years of experience working with people with disabilities, Dr. Kark was educated at two of the top universities in the world – Harvard and Oxford – and had stints at prestigious Massachusetts General Hospital, the National Institute of Health, and several leading universities during his distinguished career. Above all this, he is a man with a very big heart.

With such a pedigree, we were thrilled when Dr. Kark joined the board at Abilities United in 2009. Upon arrival, he was thoroughly impressed with what he found. “I’d never seen anything like it,” he says. “Everyone on the staff deeply cared about what they were doing. They all wanted to help the participants move forward, and to enable them to contribute to society however they could. There was such a warm, positive feeling.”

Abilities United has a different philosophy than some of the other organizations Dr. Kark has encountered. “Other organizations, particularly in the past, viewed people with developmental disabilities as people who needed to be cared for,” he says. “In contrast, Abilities United sees each individual as a person who can contribute to society in enormous ways! We have people who are excellent poets, artists, writers, and musicians. For the November 2012 election, five individuals organized a community discussion about tax issues that went for a couple hours and really got into the meat of the issues. Our participants are people who have a lot to give back, and they enjoy giving back.”

Over his career Dr. Kark has seen some important and very positive changes for those with disabilities. He has helped enable some of these changes himself; through his research he identified that some disabilities, which are caused by chemical imbalances in the brain, can be treated simply by changes in diet. “One of my first patients had problems with coordination, and by putting him on a low sugar diet he’d get better very rapidly,” says Dr. Kark. Simply put, his pioneering work has helped enable more effective treatments for an entire class of disabilities.

While pleased with the progress he has seen over the past fifty years, Dr. Kark believes that we still have a long ways to go. “There are hospitals and high-tech companies – even in this area - that can’t imagine hiring someone with developmental disabilities for a job that they could certainly do,” he says. “People need to recognize that those with developmental disabilities have a lot to contribute.”

With his deep expertise and passionate support for people with developmental disabilities, Dr. Kark has been a wonderful addition to the Abilities United team.

Based on a 2013 interview. 

Written by  Bob Thomas and edited by Pieter Kark and Wendy Kuehnl.

Amber and Jacques MacMillan: Early experience creates ongoing involvement

The MacMillan Family: Jacques & parents
benefit, mother joins Abilities United board

From her work as a speech pathologist, Amber MacMillan had heard the buzz about Abilities United for years, and she became aware of the agency’s work. Then in 2008, her son Jacques was born with a disability and suddenly her family would become partiipants of Abilities United.

“Jacques was born in 2008 with a condition called hypotonia,” says Amber. “He was in the early intervention program at Abilities United starting at age two. With their therapy we saw lots of improvement in his ability to maintain his balance, and then to be able to stand and eventually walk.”

Like other Abilities United participants, Amber valued how Abilities United helped the whole family. “Having a child with a disability is a traumatic experience that hits like a freight train,” says Amber. “We had plans and dreams for our child, but now we would be taking a different path. It was very disorienting; suddenly my day was driven by doctor’s appointments and therapy appointments, and I didn’t know what was going on with our son or why. With Abilities United, I felt like I was arriving at a place where a team was going to take care of me as well as my child.”

“As a mother I found enormous value in what’s called parent group time,” Amber says. “When the child is with a therapist the parents have 45 minutes with each other and can talk about things relating to their children, or talk about what’s going on in their own lives. Lots of tears are shed there and you know you’re talking to people who understand the challenges. We all benefitted and felt that the parents group did something marvelous for us”

Amber was so impressed with her experience that she worked with three other parents to co-found the Abilities United Parent and Staff Association, and later she expanded her efforts to give back by joining the Abilities United Board of Directors.

At Abilities United, we are proud of the progress that Jacques has made, and we are thrilled to have the opportunity to work closely with Amber as she strives to help both the organization, and other parents who have a child with a disability.

Based on a 2013 interview. Written by Bob Thomas, edited by Amber MacMillan and Wendy Kuehnl

Charlotte and Gina Rayfield: Abilities United is like family

For Gina Rayfield and her charming daughter Charlotte, Abilities United has been a family affair.

The Rayfields first came to what is now Abilities United when Charlotte, who was born with cerebral palsy, was about a year old. “We were a family coming in, with a child born with a disability, and we didn’t really know how to support her,” says Gina. “At the beginning when you have that challenge, it can be daunting, and you feel alone. Abilities United is really a great place for people to come together; to get the support for the family, and to help the child excel and succeed as much as they can.”

Gina was so impressed with her experience at Abilities United that she became a volunteer, then a member of the Board of Directors for six years, and then continued to be involved with the annual Author’s Luncheon. “My favorite memory of Abilities United was having our family featured at the Author’s Luncheon,” says Gina. “We presented a video of Charlotte, showing some of the amazing things she’s done and what a great person she is. Being on stage with her and sharing that moment was truly special.”

Charlotte today is a smart, vibrant, and impressive young lady. Now a 14-year old girl, she’s something of an ambassador for Abilities United, and supports fundraising activities via the Author’s Luncheon and the Abilities United Aquathon. She’s gets around in her wheelchair, but this hasn’t stopped her from developing a passion for bi-skiing, and videos on youtube of her skiing [http://www.youtube.com/watch?v=wh1yiA4iGuE] reflect her joy on the slopes. She’s a young girl with great dreams – “I want to be a teacher and an author,” she says.

“I would encourage people to learn more about Abilities United,” says Gina. “It’s a vital part of the community, and the work they do is amazing and important.”

Based on a 2013 interview. Written by Bob Thomas, edited by Gina Rayfield and Wendy Kuehnl

Lechuga Family: Laura made impressive progress at Abilities United

The Lechuga Family: Laura's progress
impressed everyone, including doctors

In 2011, Ed Lechuga was grappling with the challenges and heartbreak of having a daughter with a disability who was not progressing. “Laura has a rare condition called Aircardi Syndrome, which results in an underdeveloped brain and other issues,” says Ed of his daughter. “A year ago, when she was six months old, she couldn’t hold her head up, and I would have to hold her neck just like an infant.”

It was at that time that Ed heard about the therapeutic benefits of the warm-water pool at Abilities United. “I wanted to do whatever benefited my daughter,” says Ed. “When we started with Abilities United, they asked what our goals were. The doctors had said that if Laura wasn’t holding herself up by age two, that she would probably never walk, so getting her to hold herself up was the goal.”

Laura went through several months of aquatic therapy at Abilities United. “One day it seemed like a switch went on, and she held up her head in the pool,” says Ed, who still gets excited at the thought. “That was a tremendous step forward! Now she’s 19 months old and sitting up, and with a bit of help she can even stand in the pool.”

Other experts have been taken aback by Laura’s progress. “Our neurologist was surprised,” says Ed, “Then when the Director of the Early Start program from the San Andreas Regional Center came over for her annual check-in, she was blown away.”

“I could talk about Abilities United all day long,” says Ed. “You can see the care and expertise they have as they are working with the children. They asked me how they could improve, and I simply couldn’t think of anything. We expect to be here for years.
 
Based on a 2012 interview. Written by Bob Thomas, edited by Ed Lechuga and Wendy Kuehnl.