Andy is our sister, she survived an aneurysm at age 14 and forever changed our lives. She impacted all of us in different ways, but I will speak for myself as the older sister. I had to grow up very fast and I learned how to become a caregiver at age 16. We have faced many challenges together as a family, but we are blessed that she is still here with us.
She makes us proud every day, she is resilient and works so hard to reach many milestones as little as being able to walk a couple of feet by herself using a walker. Andy is the most sweet and positive person, she makes us smile even on the toughest days, she really makes us realize how blessed we are. Sometimes I feel sad that she has not been able to experience all the things I have been able to experience, but she drives me to be the best person I can be so that I can make her proud. Being a sibling has been challenging and it can be lonely, but it also makes you tough. My love goes out to all those siblings out there!
Jayla is 8 years old and the middle child of 5 children. Both of her brothers have Autism Jayden is 13 yrs old and Jayceon is 6 yrs old.
Jayla is very smart and attends a gifted school “Sara M.Gilmore Academy” she is in 3rd grade now. Last year Jayla and her little sister Jaylani (7yrs old) are extremely understanding of their brothers and the challenges that come from both of their brothers being on the spectrum. Last year, Jayla had spoken to a few friends about her brothers and their struggles. One day while in Media Center she chose a book about a boy with special needs. A classmate asked her why she chose that book and Jayla replied “both of my brothers have autism remember?” To Jayla’s surprise her classmate said “Eww they’re weird and dumb.” Jayla can home distraught crying how it was her worst day of school ever. Now this is a child that cries during summer break because school is over and she will not be receiving any more homework. She began to tell me what happened on the way home. Instantly, my heart was shattered for Jayla and myself and most importantly for my boys.
After all these years they’re still being mocked and ridiculed for a disability they have no control over and have never wanted. So I asked Jayla, well Jayla what do you think we should do? Jayla’s reply was “we need to teach her about autism so she won’t be scared of any kids like they boys who have it.” I was impressed but most importantly bursting with pride. She didn’t even want to get her classmate in trouble she wanted to educate her. She asked me if I can speak with her schools counselor Mrs. Torres to ask if she would be able to bring in a book I have read to all of my kids about autism “My Brother Charlie.” Mrs. Torres loved the idea and Jayla was able to read it to her both 2nd grade classes. Then Mrs. Perez (her schools principal) got wind of it all and called me in to commend me on Jayla handling the matter in such a mature fashion and wanting to educate the other students. Mrs. Perez asked Jayla if she would like to read the story to grade 1-4 in the auditorium. Jayla obliged and although she has stage fright she faced her fears and practiced at home and read the story with her principal beside her. Her principal who also has a son on the spectrum so this was a matter that hit her close to home as well. She got choked up a bit and took a minute to get herself together but all in all I’m so proud. Proud I raised such a wonderful and thoughtful little girl who thinks of everyone’s needs before her own. Who rather educate her peers rather then get them in trouble. Who at the age of 7 stood up for her brothers and faced her fears to make sure her brothers will be understood but most importantly accepted.
This is what makes my Jayla a “Special Needs Sibling!”
Jessica has been Billy’s #1 advocate since the day he was born. From age six, she was determined to be his best friend, caretaker, and protector. More than 20 years later, their bond remains equally strong–and Jessica remains equally committed to being Billy’s champion.
After living abroad and in several states throughout the U.S., Jessica moved back home to Chicago to be closer to Billy. Recently, she nominated him for her community’s “36 Under 36” list of notable young adults, and was honored to attend the awards reception with him. This summer, she published a picture book about her experiences growing up with a sib, and hopes it will help kids know they are not alone. (“Special Siblings: Growing up with a sibling who has special needs” is available on Amazon.)
Ava’s sister has a rare disease DHX-30! So rare the first symposium about it is in 3 weeks in Sept. I am going to have Ava fill this out……
I have been invited as a public speaker to attend and speak about sibling issues…. I was bullied my whole life, but I was also bullied about my sister! When that happened, I had enough! I was bullied on social media and I screen shot it, and started my own “awareness group” called Ava’s Advocacy Army!
The Army gained a lot of attention and I earned a Civic responsibility award….
(After that I was asked to speak at the first symposium)
My sister is my best friend! I don’t feel like I have it hard because my sister is special…. life can just be hard…. seeing her sick, and when life gets scary! That’s when it’s hard…..