There were hundreds of athletes participating in Vermont Special Olympics’ Basketball tournament this past April at UVM Patrick Gym.  There was also a full range of disabilities and ages represented.  However, there were several athletes that looked on the surface as if they had nothing wrong with them: people might wonder why they participate in Special Olympics.  One boy in particular stood out to me and his name is Matthew. Matthew is 11 and has Klinefelter Syndrome.  He looks like any other 11-year-old boy, albeit tall in stature, but beneath the surface lie subtle physical differences and cognitive issues.  Fortunately, Matthew's parents recognized early on that something about their son was different from normal kids and pushed the medical field to find a diagnosis.  Thanks to genetic testing, they got their answer when Matthew was 6 years old. Klinefelter Syndrome is a genetic mutation on the 47th chromosome where an extra … [Read more...]

When starting out Kayla’s Directory I had limited knowledge of running a non-profit. Fortunately, I had a lot of people that helped guide me through the process of fundraising, social media, and how to network in the community. I would like to personally recognize Sara Byers, president of Leonardo’s Pizza. Sara has extensive knowledge about non-profits. She is chair of the board at the Flynn Center for Performing Arts, is President of the board of directors at the Lund Center, is on the board of trustees at Mater Christi School, and is on the board at Lake Champlain Chamber of Commerce. Her diverse knowledge and expertise in running a business has been an invaluable tool. Not only has Sara answered a lot of questions for me personally along the way, but she has also been a big supporter of Kayla’s Directory and recognizes the need in the community. She has a huge heart and is a big believer in helping people within the community … [Read more...]

Our family started attending Davis Studio about seven years ago. Back then, it was on Pine Street, parking was tricky, and there were few classrooms, small spaces, uneven floors, and limited air conditioning. But Theresa Davis and her staff were amazing, so it was always rewarding to attend any class. Fast forward six years and we put Kayla in a class, knowing that she was delayed in fine and gross motor skills, that she had some medical complications and difficulty with new situations, and that social skills with peers were challenging for her. We enrolled her in a week of “Shark” camp with Lydia. She thrived in that camp. She brought in books and information about sharks to share, created some great artwork, was excited to go every day, and absolutely loved Lydia. Lydia was more than merely accommodating of Kayla: she really connected with her, which means a lot because relationships are very important with Kayla. This year, … [Read more...]

In general, we have always scheduled community outings with Kayla’s needs in mind.  Over the years, we have found places in the community that are ADA accessible and/or places that recognize and accept that she is different from your normal child.  As she has gotten older, she has become more flexible when it comes to visiting new places, which has made things a little easier.  However, Kayla’s level of fatigue and coping skills may vary from day to day, so we always adjust our plans accordingly and will only go to a place that meets her needs. That being said, booking a family vacation is a whole different ballpark.  Vacation is supposed to be fun, relaxing, and enjoyable.  But honestly, traveling with a child who has special needs can make vacation stressful, unpredictable, and exhausting.  There is a lot of extra planning involved.  From the stress of the airport and airplane to the haggle of the hotel, from the search for … [Read more...]