Early on in our journey, we realized that we most likely would not be able to interview everyone who reached out to us. Some people were out of town when we were in their city or lived in a city that was not on our route and so would be out of our reach. However, we didn’t want to prevent those people from being able to express their feelings about being a sib. So we created a “Share Your Story” tab on our blog with the hope that people would fill out the online form with information, anecdotes, and raw emotion about their own sib story. And fill out, they did! This post will be composed of short tidbits from each sib who has completed this form. Hope y’all enjoy their colorful and honest tales of growing up with siblings with various disabilities and differences.
Rebecca from Lexington, MA — one of 9 children, has a brother with Down Syndrome who is 44.
“Probably the best memory when we were children was bringing him to Special Olympics. It was so amazing and mind blowing to me to see him accepted and part of a group. And, he competed so vigorously.”
“I find it shocking to think I really don’t know other siblings. (other than my own and we are a great support for each other). I have never had support services, but think that Special Olympics has contributed a lot to helping generate a good perspective.”
“The hardest thing about having a handicapped brother is not the handicap. It is the social rejection. However, I think the world has changed so dramatically. I can hardly describe the contrast between when I used to take him places when he was small and now! The ADA has had so much impact in changing social values.
I hope society will continue in the vein, being inclusive, and accepting, and then the “burden” will be so much less so.”
Helaine from New York City – has a brother with schizoaffective disorder and Aspergers who is 29.
“However, when he was 21, he began to have outbursts, often violent episodes, in which he would wake up in the middle of the night screaming, and often punch or push my parents. My room shares a wall with his, and so often I was startled when he woke up at 2 or 3 am, and could not go to sleep fearing that he was going to hurt my parents (he has never touched me during an episode.) It was, for lack of a better phrase, scary as hell. However, I was told that what happens in the house was nobody’s business…and as a 14 year old, I didn’t think twice about that.”
“For YEARS my parents yelled at me for being “snotty” to my brother in mixed company, but for me, that was my way of acknowledging that my brother and our relationship was not normal. As a 14 and 15 year old, I couldn’t articulate why I had so much trouble being nice to my brother. But now I can say that treating him nicely would have been going along with my parents and putting on a show. My parents have been so keen on keeping the severity of his mental illness a secret, but after some time holding it in became too much for me.”
“There are very few people I feel comfortable talking about my situation at home to. But I definitely do feel the closest to my friends who know, and always feel as if I am holding back a huge part of myself from friends who don’t.”
“I was happy to get out of the house for college four years ago, but the transition between college and home each winter and summer break was always difficult for me. At school, I was progressing, growing, having a great time. But then I’d come home and be reminded that nothing is ever going to change for my brother, and also be reminded that he can be violent at times. I felt bad for him, for my parents, it just made me sad.”
“I graduated #1 out of my 732-person high school class, and that the “me” my parents saw, I couldn’t tell them what I was really feeling underneath. In the past few months, I have been trying to discuss with them the impact my environment has had on me, but so far no good. However, now that I am starting to talk about this more to others, I hope to ultimately be able to get through to them.”
“I just told you all of this to express to you, as a sib, that I feel how a parents handle their son or daughter’s disability can greatly impact how the sibling feels. I do feel that my parents do everything they possibly can and more for my brother; however, I think they’ve neglected to realize how much of an impact living with my brother has had on my life.”
Jill from Nazareth, PA – has a brother with Down Syndrome, autism, celiac disease, epilepsy, a heart condition and other medical issues who is 20.
“I have many positive memories of Kevin. Kevin loves going on amusement park rides and I referred Kevin for the Make a Wish Foundation. Kevin got a wish to go to Disney and my family went to Florida in May 2011. We had a fantastic time and I have never seen Kevin happier. I felt blessed that I was able to help get that opportunity for Kevin.”
“As a child, I remember trying to always be perfect so my parents wouldn’t have to worry about me. This has carried onto my adulthood and I have anxiety due to always trying to be perfect. I have taken a lot of the responsibility for Kevin and I am almost like a second mother to him. This can sometimes be very negative as well as positive.”
“I have been very upfront with my boyfriend and told him as soon as things started getting serious. I told him that I come with this baggage and one day I will be in charge of Kevin when my parents can no longer take care of him. My boyfriend was interested in moving about 3 or 4 hours away and working on a farm. I told him that I can’t because I wouldn’t want to be that far away from my brother. I have this guilt inside of me that I feel it would be wrong for me to move that far away.”
“I understand that things could always be worse and to appreciate things in a different way. I have a connection to the special needs community. I am proud of Kevin and am amazed everyday by him. I have a hero who is my brother.”
“I think it is important that young siblings would be reached out to and know that they are not alone. How they may be feeling is normal and they should be able to have someone to talk to.”
Erin from Wrentham, MA – has a sibling who is mentally and physically disabled and is 14.
“My little sister is my whole world. That is pretty much the only way I have ever described my relationship with Shan. We also have 2 older brothers that show up when they feel like it but for the most part are not around for her or for me. At this point I am Shannon’s other parent. My father passed away 3 years ago leaving my mom and I to make sure Shannon is ok. This has been a change in that if my mom is not around I am the only other person there for Shan.”
“Pretty much everyday with Shan is positive. You can’t help but be happy when Shan is with you. When you walk in she gives you a hug and barely ever stops smiling. That’s not to say internally I haven’t had negative struggles.”
“I would want to know if they receive support from their other siblings with their sib be able this has always been the thing that bothered me most.”
Ellen* from Boston – has an older brother with PDD- NOS who is 25.
“However, as we entered our teenage years, my relationship with L started to get really strained, as he just seemed to not be motivated or (in my opinion) trying hard enough to grow up and stop letting my parents make decisions for him or help him with things I assumed he should have been able to do on his own by that age.”
“Our relationship today is still rocky at best – as bad as it sounds, we seem to get along best only when we’re not around each other…I guess when we feel like we miss each other is when we actually appreciate our siblingship.”
“In fact, I think some of the issues in our relationship come from the resentment I had for a long time with what I viewed as my brother’s “refusal” to be normal, coupled with my parents’ “refusal” to admit that there was something “wrong” or “not normal” about my oldest brother. I was confused about why my brother would act so anti-social or childish when my parents never clearly stated that there was anything different about him. And when it got to the point where I realized some of my brother’s behaviors were just too odd to be by choice, I was really frustrated with my parents for trying to pretend everything was normal when it wasn’t, and I think I projected a lot of that frustration onto the relationship between L and I.”
“One positive thing about having a sibling with a disability is that when they succeed at something, everyone comes together to celebrate. A particular instance of that for me was when my older brother finally finished his college requirements and earned his degree after almost 7 years of classes. Getting to join in his joy at seeing himself succeed at something he’d been working at so persistently alongside the whole family was a great moment. “
“Particularly for Thanksgiving dinner – my parents love to have guests over, but I’m always uncomfortable through the whole meal because my brother talks extremely loudly and dominates the conversation with ill-placed jokes and obsessive sports talk, and he refuses to eat anything other than peanut butter sandwiches for dinner which always takes some explaining to guests when there are trays of delicious food in front of him”
“I also don’t talk about my brother too much with those who don’t know him, because I honestly don’t know how to explain him to other people.”
“I’ve really been drawn to this population since I was in elementary school, and right now I’d like to go on to become a school psychologist after college because it would give me the opportunity to work with students with special needs and various psychological and developmental disorders.”
“However, as selfish as this sounds, I don’t WANT to have to take care of my brother – I always catch myself thinking that he’s the older one, so if anything he should have to take care of me.”
“Even before I knew the technical name for my brother’s condition, I think I was better able to empathize with families we saw out in public who had children who were visibly or seriously disabled and didn’t get annoyed or upset when those children started behaving “strangely” or were having a rough time. Being a sib teaches you that people are different and that that’s just a part of life.”
“Even since I found out about my brother’s diagnosis, I’ve always viewed sibs from an outsider perspective – I rarely equate what my life is like to that of the sibs I know whose siblings have more severe autism diagnoses or other disabilities. I think that’s just because for so long I didn’t know for sure whether or not I WAS a sib myself, and now I’m just stuck in the mindset that I’m not.”
“I feel like, from my skewed perspective, more support services or counseling groups could be made available to sibs of individuals with high-functioning or mild forms of disability – I guess, sibs like me who feel like they’re walking the line between normalcy and disability and aren’t really sure where they or their sibling/family fall.
Question: When/how did your parents decide to tell you about your sibling’s diagnosis? Was it always obvious to you that your sibling was different, or did you need to be told straight-out to know that you were a sib? Do you feel like your life would have been different if they didn’t tell you about it straight-out – if they waited for you to ask or just didn’t ever tell you to try to encourage an air of normalcy about it?”
Sophie from New Jersey – has a twin brother with Autism who is 22 and an older sister with Rhett Syndrome who is 26.
“I was always close with my brother and sister, especially my brother. However, it was mainly behind closed doors. Growing up, I did not feel comfortable talking about them, or integrating them into my life other than when I was at home. We always watched movies together, and my brother and I used to play all sorts of games together, and go on hikes in the woods. I really was close to them both in the confines of our home or when we were with extended family. “
“My brother and I are extremely close. It’s partly because we are twins. I feel that I understand what he’s thinking most of the time, and I feel he understands me as well. They say that people on the autistic spectrum have trouble interpreting faces and understanding others emotions, but with me, I find he’s the first one to know when I’m upset or angry, or just feeling down. He’ll come snuggle with me. He just knows. “
“There are also times when he really frustrates me though. He does something called “silly talking.” All the time. He just talks and talks and talks. He repeats commercials from his child hood, songs from his childhood, lines from movies, Sesame Street songs, and noises that I have no idea what they are. And he’ll do this in public, in silent movie theaters, silent broadway shows, in crowded rooms. It seems like he makes sure he is the loudest sound in the room. And it drives me crazy even to this day.”
“With Annie, we weren’t as close in my childhood. It was harder to be. She cannot speak and she cannot walk. She understands what we are saying, but she is essentially trapped inside a body that does not do what she wants it to do.”
“I vividly remember going to a show with my family. It was a very quiet point of the show, and all of a sudden I hear a gargling noise. It’s my mom feeding her through her feeding tube in her stomach, in the middle of a show! I wanted to disappear. I used to deal by staying silent and suppressing my feelings. Sometimes, I’d tell my parents about how was feeling, and would feel guilt for the feelings I was having about them and would stay silent most of the time. When I was embarrassed in public, I’d escape the situation, and run away. If someone stared at my siblings, I’d deal by glaring at them back. I was very selective about who my friends were when I was younger, and who could come to my house. (I even feel guilty writing all of this now) Things have gotten easier for me, and I recently started to see a therapist to talk about what it has been like growing up with 2 siblings with special needs.”
“I honestly do not know too many sibs. I know one. Her brother attends a program with my brother and we together with our families have dinner on Monday evenings. This only started recently, and we really do not talk about our siblings, we just play and hang out with them together. Looking back, I truly wish I had a group of sibs who I could reach out to and could understand me.”
Thanks to all of our sibs!