“My Story” by Ava Ventrella
Being a kid is hard. Being a kid who has a special needs brother is harder.
When I was really little, I didn’t know any different. As I got a bit older, that’s when I began to notice people starring at my brother. Today, kids will ask me “Why is his head so big?” or “Why does he look different?” This new understanding that something was different about my brother—our family—made me feel something but I never could explain it.
The truth is, his looks and behavior are not normal and it does affect me. This is the reality of having a special needs kid in your house.
“ A lot of attention is devoted to the kid that makes everything turn on its head every hour of the day. My name is Ava and this is my story.”
Ava and her brother
My brother Luca has a rare condition called Sotos Syndrome. He grows fast, his head is bigger than normal, and he behaves much younger than his age. My family does not carry the Sotos gene, so the testing process took years to discover his diagnosis. For only being 9 years old, I’m very aware that sometimes things happen that are simply beyond our control. And that’s alright.
It goes without saying that my brother did not ask for his syndrome. As much as I love him, it often feels like an entirely different person is living in our house. A positive spin on his condition is that even though he is older, he acts younger. This means more toys for him that I Iike, too. Not to brag, but he can also recall most cartoons—and reenact them. He has a very busy imagination and creates a constant stream of new pretend friends.
When I started at a school where my brother was going it was a hard place to be when your sibling sticks out so much. The school did not know what to do. There were lots of phone calls and lots of meetings about him. I felt embarrassed and my brother was miserable. The school made both of us unhappy for different reasons, but the common factor was no understanding of the difficulty families with special needs face. We were not treated fairly. When he was finally “allowed” to find a school that would meet his needs, we all felt better. He was still having problems with anxiety, fear and trust, but we found new teachers that are able help him. I also found myself heading to a new school after our experience.
Medicine has been a scary part of our lives until 18 months ago when my parents with the guidance of Luca’s doctors just had enough. He had a string of bad reactions to the various meds and it outweighed the good it was attempting. Typically, I recognize medication can help, but in my brother’s case he’s a kid who is extraordinarily sensitive to drugs to a point that it becomes dangerous. Reactions lead to hospital and doctor visits regularly. Hospitals are supposed to help but in emergencies they are just really scary places to be from where I stand. It’s a lot to take in as so much is going on all at once that is big and unfamiliar. I know because I have seen it firsthand.
When a family member is so sick, you are helpless and need hugs. Hugs sometimes have to wait because the focus is on your sibling. This is when being patient is hard. It can feel like your special needs sibling is taking up all the energy in the room. You can’t breathe, and you are also scared.
At home Luca has different therapy all seven days a week. He needs to learn things that you and I just know how to do. The house is a revolving door of people who are here to devote time to my brother. I always wanted someone like one of his therapists to talk to just for me. I started to think about how great it would be to have a group of people like me who could help each other and help in our community. This is why I started Ava’s Arch.
“I am hoping others can learn from me and I can learn from them.”
The future is uncertain. Luca has already accomplished a lot of things doctors were not sure would happen. I worry about what will happen to him when we are adults, when my parents are not here. I feel responsible and unsure how we will interact.
I do have two parents who love me a lot and are honest with me about questions I ask, but it does not change the fact that I am the sister of a special needs brother. I am still figuring out how this will play out in my lifetime.
We asked Ava to write an article for Holton’s Heroes new section “Sibling Spotlight” and she blew us away with her wisdom, grace, and incredible gift of writing. Let us know what you think in the comments below. For more information on Ava’s Arch visit her site or contact her directly at ava@avasarch.com.
Holton's Heroes sponsored three incredible campers to attend the 2018 summer session of Camp Cranium—a camp dedicated to providing a one-of-a-kind experience for children with brain injuries.