Lynn is our Change Agent. She has played an important role in Spencer’s life not because she has to, but because she wants to. Lynn taught Sunday school at our church for over 20 years. After she retired, Lynn chose to continue attending Sunday school as Spencer’s aide. She incorporated Spencer’s academic needs, like fidgets, talkers, and verbal cues, into every Sunday school class, and I could count on her to continue the consistency that I found so important. Outside of Sunday school, I could call on Lynn for anything: She would come over for an hour to play with Spencer, just so I could breathe and get the dishes done. If I had an out-of-town meeting, she would arrive at our home at dawn, get Spencer’s breakfast ready, and get her to school. I could count on her to pick Spencer up whenever I needed her to. Lynn would tell me, “You can't do this alone!” Lynn rolled up her sleeves and loved Spencer through it all: the drooling, seizures, and diaper changes. She just loves Spencer for all of who she is. When Lynn’s husband retired a couple of years ago, they moved to Washington State. With our nearest family 10 hours away, I realized how much I relied on Lynn and her get-it-done attitude. Lynn keeps in touch still, asking after Spencer and continually sending her postcards and gifts. That kind of continued compassion for our daughter has meant so much to our family. Lynn is a Change Agent for sure!
Marcia is our Change Agent because she has worked with Andrew for over 16 years as his physical therapist. We were referred to her when Andrew was a baby, and she’s been with us on our journey the entire time, caring for him. Andrew and I have made weekly visits about an hour away just to see Marcia. In the beginning, Marcia worked her hardest to get Andrew to move—to sit, crawl, and stand. She tried it all. As the years went on, it was becoming clear that Andrew would not meet any more developmental milestones, but she continued to work with Andrew—to stretch and work his muscles, to give him the opportunity to stand and to use a bike. She was always smiling, always a cheerleader to Andrew. She’s also been a cheerleader to me. When I look back now, I realize I talked Marcia’s ear off at Andrew’s appointments! She was my sounding board, always listening and helping me. I just want her to know that she made an impact on our lives. We’re so happy that we met her and that she came on this journey with us.
Amanda reminds me every day that Kannon is leading an extraordinary life. She has supported me from day one of his LGS diagnosis. I walked in and said, “Kannon had a seizure,” and from that moment forward, she has supported me through every hospital visit. Every big seizure event. Every loss of cognition. She has been there 100%. She is also a professional that works with families of individuals with intellectual disabilities, so her knowledge has been extremely beneficial to me. Amanda also allows Kannon to be exactly who he is and is never embarrassed by him. She lets his light shine so brightly, and does everything in her power to make sure his story is heard, shared, supported, and respected. Having a friend like Amanda has been a game-changer. Without the ongoing support from her and her family, I’d be lost. Kannon and I are both better because of her, and Amanda is definitely a Change Agent in our lives.
Adaptive Sports Instructor
We met Matt for therapeutic horseback riding when Lili was 3 years old. And he instantly took my little baby right away from me and he said, “Lili, we are going to go have fun.” I’m very grateful for someone like that in our lives because I would have been too scared to allow her to do many of those programs. But Matt said to me, “She’s a kid. She can do all of this. There will be 4 adults with her. And she needs to have fun like everyone else.” I appreciated that from him. If it hadn’t been for him, I think I truly would have limited Lili over the years by not realizing how many adaptive activities she can participate in. His motto has always been that kids just want to have fun and that they can do anything. Some just need certain supports in place to help them achieve this. Without him, Lili would never have been skiing, tubing, or horseback riding. I think the impact that it’s had on us is that—yes, Lili has seizures. And we need to keep her safe. But that just means we need to add extra safety things in for her. But she can still do it. Matt is an amazing person who has really been a Change Agent in our lives and shown us all that Lili can do.
Always consult your healthcare provider before having your child with LGS start new activities.
Melody is Bobby’s sister-in-law. She is an elementary school teacher and a wonderful example of love, kindness, and understanding. Melody is always concerned about Bobby and his needs in living with Lennox-Gastaut syndrome (LGS). She takes the time to just talk and share with him. We appreciate her so much and the kindness and love that she has for Bobby. Our family is blessed to have her in our lives, and she very much deserves to be called a Change Agent of the LGS community!
Jessica was one of Abby’s teachers in middle school, and the impact she had makes her a true Change Agent. The interest that Jessica takes in each of her students and the time she invests in them is inspiring. She knows them all so very well—their likes and dislikes. Jessica got to know and understand Abby to the point that she knew what kind of day Abby would have just by looking at how she entered the classroom. Always kind and gentle, yet firm in instruction, Jessica pushed Abby to do her best. We also appreciated how creative Jessica was in teaching life skills in the academic setting. For example, there was a portion of class on Fridays during which the kids would cook muffins and other breakfast foods and then sell them to the staff. Abby learned food service skills and how to package the items and ring them up using a cash register, and she also developed interpersonal skills. Abby looked forward to going to school because Jessica made the learning environment fun and engaged her. Abby was happy to do her homework because she wanted to please her amazing teacher, Jessica. Abby would come home from school in a good mood after such awesome days spent with Jessica, and that impacted our family in a very positive way. Jessica is a Change Agent for sure!
I nominated Coach Will Harte for the Change Agent award because as Adam’s high school cross country coach, he has fully embraced Adam as a member of the team. Adam’s involvement on the team has not only meant the world to him but it has had a noticeable ripple effect. The boys on the team, other coaches, and other teams that run in the cross country meets with Adam see Coach Harte as an example of embracing somebody with special needs. It’s really been a wonderful opportunity for inclusion for Adam. Coach has set the tone with his leadership and kindness. He has really been an inspiration to others.
Fill out the fields below, and click “Send” to continue.
Error. Please try after sometime.
I saw this page and thought you might be interested in it. It’s about the Change Agent program, which recognizes people whose support makes a difference in the lives of people living with Lennox-Gastaut syndrome (LGS).
Click here to check it out:
You are about to leave the LGSChangeAgent.com website and go to a website sponsored by Lundbeck, a global pharmaceutical company dedicated to improving the lives of people affected by neurologic disorders. Would you like to continue?
Click "OK" to proceed to this website or "Cancel" to stay at LGSChangeAgent.com.
Fill out the fields below and click “PREVIEW” to continue.
*Indicates Required Field
Error. Please try after sometime.
I thought you would like to read about this Change Agent who is making a difference in the Lennox-Gastaut syndrome (LGS) community. You may want to nominate someone in your life who is an LGS Change Agent.
Click here to learn more.