I can honestly say I was never so happy to be sworn at as the time I was when Joe typed on his Ipad he was” being loud because I was a nagging b*tch!” Nicola Farrell, sister to Joe
My name is Nicola. I live in Alberta Canada. I have an awesome husband and two furry Cairn Terriers. I have two younger brothers Frank (33) and Joe (21). Frank is married and has a 7 month old little boy. Frank and I grew up in a small fishing community in Newfoundland Canada and got along like your typical siblings. We fought, hung out, bugged our parents and then repeated it all again.
Joe is almost 15 years younger than me. He was born my sophomore year of high school. Joe will be a Freshman at college in the Fall. Joe is also my concert buddy and occasional drinking buddy. He likes to travel, camp, ice skate Friday nights, and steal my iPhone to listen to my playlists. Did I mention Joe has autism, epilepsy and is non-verbal? He tries very hard not to let that define him. In fact our family worked and continues to make sure people know he is more than simply his diagnoses.
When Joe was born he was a big, bald, beautiful baby. My brother and I loved him and were so proud of him. We loved to show him off. As he grew he spoke, recited his alphabet, counted, knew all the names of the bands and singers on our posters in our rooms. He liked to dance and play. This was all before he was 18 months old. Then things changed. He was like a different child. He squealed, toe-walked, flapped, would not look at us and did not want to be held. Dinner time was a delight (sarcasm). I sat across from him and sometimes the table would end up under my ribs. Hair cuts were a fright. People would have thought we were killing him. Hair cuts were done at home – first by a lady who would come to my parents house and later by my Mom. She did get pretty good with the clippers after a few years. Senior year for me was really stressful – classes were tough, I wanted to go to college, had a friend who got sick and my little brother was not “acting normal”.
My parents and two brothers moved to Maine, USA my first semester of university in Newfoundland. My mom took a position nursing, my brother Frank enrolled in high school and Joe enrolled in a program for preschool children with developmental disabilities. He was diagnosed on the ASD spectrum. It was really tough for all of us to be apart and having to depend on people from another country to provide services, education and care for Joe. I would visit during Christmas break and Summer breaks. I think once I heard what the diagnosis was I could do some reading on it and I could start to understand why he did what he did or didn’t do. Mom convinced me to sit in on workshops and training sessions with ABA (Applied Behavioral Analysis), Occupational, Physical, Speech, Recreational Therapy sessions (hours upon hours), I volunteered at his school, I took PECS Level 1 & 2 (picture exchange communication), I became a member of Tumble Kidz (a gymnastics class for little kids), and attended sign language classes with him. I became very involved in the therapeutic side of my brother’s life when he was young. I hated seeing how vulnerable he was and dependent on so many people. Witnessing him having seizures on multiple occasions and almost losing him made me very protective. I hated saying good-bye when I had to leave to return home.
My family moved back to Newfoundland, Canada when Joe was about six. There weren’t many services available for him back then so my family packed up and moved west to Alberta. School continued to be a struggle and services too. I moved out to Alberta to help out and start a new life for me too. Joe began to type (with a little assistance) and do homework and request certain things. He was a happy guy- I couldn’t understand how he woke up every morning with the biggest smile on his face even though he had so many roadblocks and so many people pointing out negatives. In Junior high and high school – he typed even more and teachers could see that there was more to Joe then his diagnosis. He might not talk with his voice but he could get his point across on his Ipad. I can honestly say I was never so happy to be sworn at as the time I was when Joe typed on his Ipad he was” being loud because I was a nagging b*tch!”
I would like to think our relationship has evolved from me being protector and caregiver to us being good friends. I watched him graduate from Kindergarten, take part in Christmas concerts, win an award for football in high school (he needed assistance to participate- but he was involved) and then graduate high school asking a classmate to walk with him in the grand march. We traveled to Disneyland together and have gone to heavy metal concerts (KORN, Pretty Wreckless, etc) and other concerts (OLP, Big Sugar, Wide Mouth Mason), even meeting Steve Earle. We attend movies, go shopping, out to bars, and participate in advocacy conferences together.
I get emotional when we walk through the college campus for practice for the Fall. He will always be my baby brother and I will always want to protect him from negative things. He experiences many negative people daily and he manages to handle it way better than I ever could. I hope he has a positive experience in college and meets some kind, genuine people who see his value and respect him. I still get frustrated with stuff he does and I still can’t understand why he can’t “just do what is expected” sometimes. There are times I go home feeling like a bad sister especially when it’s been a rough day for my brother and I couldn’t help him through it. I know there are days when he’s unhappy with me and frustrated but I consider him one of my best friends. He has taught me so much and helped to shape me into the woman I am today. I’m lucky to have two amazing brothers! I love them both and am grateful for them each and every day.
Nicola Farrell 2015. Joe Farrell was part of The Autism Unveiled Project, 90 blogs from Autistic people.
A very moving piece – thankyou.