In honor of National Caregivers Day, I wanted to share something meaningful to my family. This post was inspired by words written by my younger brother Patrick at only 10 years old. To me, this is the true definition of a caregiver.
To families like mine and to every family supporting a loved one with a special ability, your dedication matters. Today, I encourage you to recognize the difference you make each day and to continue building communities rooted in empathy, support, and understanding.
This drawing is so special to our family because it was made by my cousin Mia for my brother Teddy, who has autism. It means so much to us to see the love and thought that she put into creating something that shows who Teddy is and the things that make him happiest. Teddy brings so much joy, laughter, and uniqueness into our lives every single day, and moments like this remind us how lucky we are to have him.
Our family loves Teddy unconditionally and celebrates everything that makes him who he is. He teaches us patience, compassion, and how to appreciate the little things in life, like his love for swinging and sticking to routines that make him feel safe and happy. Teddy is such an important part of our family, and we are always proud to support him, advocate for him, and love him exactly as he is.
This winter in Upstate New York has been especially snowy, but one thing about Teddy is that he absolutely loves being outside and swinging, no matter the weather or how cold it gets. Being outdoors is more than something he enjoys, it is an essential part of his sensory regulation. Spending time outside helps him feel calm, grounded, and able to function and thrive throughout the day.
Last week, my brother Teddy lost his educational placement. Without the sensory supports and accommodations he needs, school became a place where he could not regulate himself or truly show his abilities. Sadly, there are so many autistic children and adults who face life without the support they deserve. When I asked my mom what the saddest (not the hardest) part of Teddy losing his placement was, she said it was knowing he will no longer get on the school bus each morning. It may seem like a small thing, but for Teddy, riding the bus was something that made him like other children and my family and I were so proud to see him get on that bus every morning. Here is a picture of Teddy waiting for the bus as part of his morning routine.
Our Caroling for a Cause event was a huge success! Thank you to everyone who caroled with us. We loved spreading holiday cheer
❤️🎶🎄
On December 22nd I am organizing a Caroling event in my community to sing for children of all different abilities! If anyone is interested in helping to support families and spread Christmas cheer please let me know. You know what they say, “The more… the merrier!”
Not many people like doctor visits, but doctor visits are especially hard for my autistic brother Teddy. It takes two people to take Teddy to the doctors because he struggles to participate in the doctor’s orders and he tends to be very upset. It is also challenging because when Teddy is sick most times we don’t know what is wrong. Our family is so proud of him for participating and for doing so well during his recent visit at the doctor’s!
School is back in session and it has not been much of a change for my brother Patrick and I. We are both at the same school that we were attending last year. A few of the same teachers and new classes but everything is very similar. However, this summer Teddy transitioned to a new school! We were really worried about the change because he has been at his old school since kindergarten and he often has a difficult time adapting to change. This summer Teddy did very well at his new school. The school was pretty empty with only a few special education classrooms in session. However, starting up in September was a very different experience. The quiet and relatively empty school Teddy was familiar with was now noisy and full of regular education students. For Teddy, these changes made it seem like he was starting over. My family is working on getting Teddy adjusted into his school routine and dealing with these changes. As a neurotypical student I take it for granted that I can filter out all of the commotion around me and still succeed. Hoping everyone (including Teddy) has a great school year!
Recently I had the once (or maybe twice if they invite me back next year) in a lifetime opportunity to rappel down the Seneca One building in Buffalo, NY in support of the Arc of Erie County! This experience would not have been possible without the respite staff that care for my brother, Teddy while my family and I are traveling or doing things he would not enjoy or tolerate. If you or anyone you know are living with someone with a developmental disability and would like more information about respite care my family and I are always happy to speak with you about our experiences and to answer any questions you may have! Special thanks to my brother’s respite aides! Your support is invaluable to us!
My family’s favorite summer activity is boating on the Great Sacandaga Lake. Besides it being super fun, boating is a special time because it is one of the few activities we can do as a family all together. Teddy loves boating! One of the hardest things about growing up with a sibling with a developmental disability is that we often have to leave Teddy home when we go out and do fun things. This is why boating is so special to us and we look forward to it every year!
What are some things that your family enjoys doing together in the summertime?
