Kayla has loved attending the kids club at the resort we stay at during our summer vacation. She loves the staff, the activities that are offered, and swimming in the pool. Out of the dozens of times Kayla has attended the kids club during our summer vacation, she has never connected with another peer. Given the short amount of time the program runs and the various kids participating, it is difficult for her to navigate and make those connections. This year when I dropped her off she was greeted by a young girl who kept asking her questions and invading her space. Kayla began to shut down and didn’t want to stay. I had to politely tell the young child to give Kayla some time and she will begin to talk to her. When the child gave Kayla her space, Kayla slowly transitioned into the program. For the first time, I left not knowing if Kayla would make it through the day. When I picked her up at the end of the day she … [Read more...]
Smooth Sailing
Do you know that you can access TSA Cares if you travel with anybody who has a disability? I was made aware of this program through a friend who has used it several times with her daughter. Kayla has a difficult time going through security. Between her AFO’s, headphones, inability to talk to people she does not know and anxiety to new situations, going through security can be a nightmare. We decided to test out TSA Cares and see if it would help Kayla transition easier through security. We used it while traveling out of Boston during April vacation and unfortunately did not have a great experience. For some unknown reason the information did not get passed on, the airlines had no idea what TSA Cares was, and the security checkpoint wasn’t that helpful either. With thousands of people traveling every day, I realize that information can get lost and things might not be in place when we arrive at the airport. I decided to give … [Read more...]
A Mentor’s Perspective
Patrick Tousignant is a senior at Rice High School. For the last two years Patrick has volunteered for Kayla's Directory. He has taught kids how to ski, supported them in our running program, and helped out in our Community Bike Day. We would like to thank him for being a positive role model and mentor for all the children we serve. Here is a beautiful piece that he wrote about his experience helping a young girl in our ski program. I walked up the long wooden staircase to the lodge on a chilly but beautiful February morning. I opened the door to a blast of warmth:, the smell of hot cocoa, and the sound of children laughing. I was already smiling. I scanned the chaotic room full of small children running everywhere, and acknowledged parents standing along the room’s border. I greeted the director and awaited this morning’s announcements. That morning I was paired with a young old girl. I met parents, was informed of her type … [Read more...]
6 1/2 years ago…..
6 1/2 years ago, you were diagnosed with autism. Two years later you were diagnosed with a genetic mutation on the MECP2 chromosome. During these last 6 ½ years, you have taught me so much. There have been times of sadness, times of frustration, and days where I worry about what the future holds for you. But when I look at all the amazing things you have taught me, the connections you have made, and the joy you provide every day, I am grateful that you have some neurological differences. Because of you, I have learned to be more patient. Because of you, my executive functioning skills have improved. Because of you, I have made wonderful connections with people in our community. And because of you, I cherish and appreciate the little things in our lives that many people take for granted. Your silliness and quirkiness make me laugh. Your determination to master things that are difficult for you makes me proud. Your ability to … [Read more...]
Beautiful A
We want to share this incredible piece written by a mother who has a 4 year old daughter on the autism spectrum. Someone once asked me once if A could laugh. I was taken back by this because of course she can laugh, she has the most contagious laugh ever. The most sincere laugh I have ever heard. When she laughs, you can’t help but laugh with her. But then I had to think back to before Autism. Did I actually know what nonverbal meant? Did I even know what Autism meant? And the answer is NO. The truth is, I don’t think anyone really knows what it means. Some of it is being naive but some of it is because what we think of Autism if not entirely true. The person that asked me this question wasn’t being mean, they just didn’t know. They have seen movies like Rainman or they may have met someone who has Autism and just put all Autistic individuals in this little box believing that everyone on the spectrum is the same. I … [Read more...]