Career Day at an elementary school ignited my childhood feelings of growing up with my brother, Nick, who has a disability:
I recently spoke before 2nd-5th grade students during a career day event at Estes Elementary School. Whenever I speak about my career path before audiences I naturally share how having a brother with a disability provided me with my drive and purpose.
After my presentation, a little girl came up to me and stated in her little 2nd grade voice, “I have a brother with Autism”.
I said to her, “You do? Then welcome to my special club young lady, because we are the cool sisters that God picked to be their siblings”.
She responded in an unsteady and scared little voice, “Yes, but I feel sorry for my brother”.
I kneeled down to look directly in her brown eyes that were starting to fill with tears and said, “He doesn’t want you to feel sorry for him, he wants you to be his door”.
She looked at me strangely. I wasn’t sure if I could say the right things to this 2nd grader in the moment I had, because I could hear her teacher encouraging everyone to get in line to go to the next presenter in another classroom. I said, “Yes a door! During life be that one person who opens the door of possibilities, the door to love, the door to friendships, the door to something he needs, but when you open that door don’t be afraid to walk through it first and take him with you. But most importantly, don’t forget to be his sister.”
This 2nd grade girl who was brave enough to approach me and share hugged me tight and hurried to get in line with her class. As I watched her walk away it took everything I had to not breakdown and cry because I flashed back to my 6 year old self. The little girl stood in line and glanced back at me, I could see she too was fighting back tears. I saw the weight on her shoulders. The weight that only a sibling could see. I saw the guilt she held inside her, the guilt only a sibling would understand. I saw a reflection of myself, and I knew in that moment she really didn’t mean to say she felt sorry for her brother. She said it because it’s what every sibling feels trying to process why their sibling is different. However, I know she will fight her entire life to make the world not feel sorry for him, but to see in him what she sees. Everything! 
For obvious reasons , the content of this subject hits so close to home and my experiences and insights as they relate to siblings are sensitive to me. I want to highlight these emotions for my readers in a series of blogs, so I can dig deeper and explore those feelings. My hope in writing about this subject to validate and bring awareness to those siblings and their families that these emotions are normal and you are not alone. So, check back and continue to follow the series as I explore the emotions and thoughts siblings of individuals with a disability may experience.
The 5 Emotions a Sibling Experiences are highlighted below. Check back for a detailed Blog on each of these emotions…..
Guilt- because they have a disability and you do not.
Jealousy- fighting for parents’ attention is a child thing, but maybe a little more magnified when their sibling has a disability. Along with thinking that their sibling gets the “easy” way out of things such as chores, school work and other responsibilities and we the “typical” developing sibling will always be held to higher expectations.
Embarrassment- it’s not the disability itself that is embarrassing but situations that come along with it. We might always be scanning the room to see if others are watching or noticing that we do things “different”.
Hate- sometimes it’s just needing to hate the disability, not the person
The 3 P’s (Pride, Protective, Possession)
Pride- that God chose them to be their sibling and the realization that their sibling will teach them more about life than anything.
Protective – becoming the shield that blocks and pushes back the negativity in the world associated with disabilities.
Possession- the feeling that no one else can support or love their siblings like they can.
Updated December 8th, 2019: Due to the amount of people who have reached out asking for more insight since this post, I have started to write a children’s chapter book. It will be based on myself meeting a friend in 6th who also has a brother with a disability. We share with our readers the emotional stories and connections we share over having brothers with disabilities! Please comment or sign up for email contact in order to be notified when the book is released! Thank you for thesupport
My Imprint:
Parent takeaway: when your child (who doesn’t have the disability) ask you “why” they can’t go on a trip to Disney or “why” does their brother/sister have to come along…don’t let your first response be: you know why, your brother/sister can’t because they have “insert in their disability”. Let your answer be different. Don’t put the blame on the disability because you are giving a reason to resent the disability itself. Allow your children without disabilities to have the feelings and don’t shame them during their “cycle” of acceptance. Remember that moment when the doctor first told you about the diagnosis and the emotions you felt? As a sibling we go through those same emotions, but in a gradual way because we are young when we start to notice the differences in our siblings, so the cycles of emotions are delayed and can re-surface at times throughout our development of life.
Teacher takeaway: recognize when your student who is a sibling to someone with a disability seems distant. There will be times of social isolation, whether it is from guilt or just needing their “me” time. Just notice and show some extra attention. Also recognize when behaviors or learning styles may mimic that of their sibling. For example: I had to have speech classes when I was in elementary school because I talked like my brother. He was my closest friend so I would mimic his speech and styles.
Community Member takeaway: don’t assume siblings know everything about the disability. Don’t overwhelm them with your questions to help you understand, because they may be cycling through the emotions above and trying to understand it themselves. There is timing for this, but allow them to just be a kid with you. Allow them the opportunity to have a break from home life, and being the understanding sibling. Provide them with a different outlet, mine was softball.
Did you know I had podcast? The intention of the podcast is to share “pieces of me” in the hopes it impacts others’ journeys. Everything from growing up with a brother with a disability, teaching individuals with disabilities, empowering women, learning to lead, coaching, being a mom (especially a boy mom), to fighting through the thoughts of self-doubt. Each will be a piece of me intended to create a better piece within you.
Follow me on Instagram to connect and come along on this journey with me!
Take a listen! Links are below for all your favorite podcast platforms!
Pieces of Me Podcast– for Apple
Pieces of Me Podcast – for Spotify
Pieces of Me Podcast – for Google Play
Pieces of Me Podcast – for Breaker
I would love to get connected with you!
Wow, its so great to have someone else that can relate! I’m excited about this blog! Thank you for sharing!
If you are interested in a book by a sibling of a person with autism, try “Precisely John A Journey of Love, Laughter, and Faith by Catherine Miller on Amazon
Preach it sister!! This is so easy to relate too!!
Thanks for sharing this. Growing up with a sibling with a disability I didn’t always feel like anyone could understand the complex and mixed emotions I felt.
I do. The emotions have run the gamut. My brother died many many yrs ago and I am still dealing with all the hurt and pain. I try not to think about my brother too much. I think kids need therapy, to understand their own the emotions.
This is an amazing article and story. I will be sharing this with my older daughter who has a younger sibling with a disability. She is the best big sister ever and is so proud and protective of her little sister. We always try to understand her needs and emotions as well and make special time for her to help with the necessary attention her sister receives.
Thank you. This topic is so important These siblings so easily get cought up in feeling like the other child.
My daughter has PTSD and anxiety from her sister’s violent behaviors, which are a direct result of her disability. As a result, my daughter has significant control issues and doesn’t like people in her personal space. She does not do well surprises or kids who don’t follow rules. I wish her teachers would understand this. They have done more damage by failing to understand and support her. Your blog is so refreshing. It should be mandatory reading to all educators and administrators.
This sounds a lot like my daughter. Specifically the control issues, personal space, and other kids not following rules. We are currently looking for a counselor or therapist to talk to because she just seems like a very unhappy child and we don’t know how to help her. Has your child been to therapy and if so has it helped?
My daughter wrote a comic book about this:
http://Www.adventuresfrommyworld.com
The effect on a younger twin, and 4 other siblings, i have been doing things so wrong, thank you for the insight, i never actually thought that their siblings feel this way, but it adds up now, 10 years. i’m blown away with this information.
This is comment alone is the exact reason I wanted to share my blog. Thank you for this. It helps me to know my purpose as I move forward, because starting this was hard but it was the intention to help others. You have motivated me more than you could realize to keep going . Follow the blog there are more articles in this series that do in detail about each emotion. The guilt article is already out, next week another one will be release . Thank you
Degrees of disability and caregiving along with parent’s ability to manage stress influence outcomes for sibs/family
I know my younger son feels these things. I have seen them. My issue is how to address them. He is the sweetest kid, and he and his brother seem to have a pretty typical relationship; except my 13 year old is the big brother to my 15 year old. My younger son, shutters his more complicated feelings and doesn’t like to talk about any of them. He has a great poker face to everyone but me, however he won’t talk to me either. I’m worried that there will be lasting negative effects to him bottling everything up.
I feel the same. My younger son 14 yr old has a big brother 19 yrs old with a disability. He has become a very responsible boy since he had to share my responsibilities. He too doesn’t talk about his emotions. I too feel he has it all bottled up inside of him. Though they share a very good relationship but he has become very sensitive . I just want him to feel free and convey the same to him but it doesn’t work
I am an elementary school counselor and a grandmother of a Downs Syndrome grandson. Your article sparked an idea that I would like to have a focus group for these students who have a sibling with a disability. I will be following your blog for ideas!! Thanks!
There is a lot on Sibshops , it’s a national thing as well so you can find activities associated with forming a group. When I was a school teacher I would host Sibshops for those siblings who had a brother/sister with a disability. Let me know how I can help support or give ideas. Love the follow and share!
Sibshop for your school district can help so many students and families in your area. Highly recommended it. It has helped with normalization for all of us.
We have a”Well Sibling Squad” in our area. I am still looking for resources for that sibling who has burdened these emotions for so long then loses her sibling, if someone has resources…
I am not sure what resources are out there but if I could be of some help please let me know .
This is something that is constantly on my mind as a parent to two special needs children and one healthy child. My daughter has two younger brothers on oxygen due to a rare lung disease. I always try to be cautious of what I say regarding why we can’t do things and why things are different for us. I pray every day that I’m doing the right thing for all my children. Being a parent is hard and being a special needs parent is even harder.
Your daughter will be amazing!! I am 46 years old and grew up the sibling of two severely disabled twins, 11 months younger than me. I have such a greater tolerance, compassion, sense of empathy, and strength for having grown up with two very special guys!
I always look at my older neurotypical daughter and wonder what her thoughts are about her brother. She is starting to get expressive about it and ask more about him. I will be reading this article to her today. Thank you for your perspective.
Every last word of this article is true. My sibling, my oldest sister, had typhoid fever at the age of 23 months, and was left partially paralyzed and stopped growing mentally at the age of about two years. This was in 1929, before the advent of so much help for such children. My parents took special care and she lived to be nearly 67 years old, all but 12 years at home! I and my other three siblings, all brothers, learned the greatest lessons of life from our June – the biggest one being unconditional love. I saw unselfish parents, older brothers who tenderly cared, and we all learned the value the important things and not the things the world loves. Beautifully written! Thank you.
I am 4yrs older than my brother Francis who was born with Cerebal Palsy , and I can remember as we were growing up, we were close because of our ages so we always doing something together, and I can honestly say, I never in my mind saw him any different than me, sure he could not do some of the things I did, but he sure the hell tried to do them and sometimes even did them, his perseverance to overcome his disability made him the man he is today , he is a Doctor who treats children with pulmonary diseases , he made me the person I am yesterday and today and forever, I am a advocate against all discrimination against persons with disabilities,
My disabled younger sibling sent me this link. Here is my story….I too have a sibling with a disability. Growing up was a little difficult. Not because of my sister, but because of how I felt my parents treated me. I have a brother (not disabled) and a sister with epilepsy and a scar on her brain which has her congnitive and reasoning skills at a much younger age than what she actually is. My father would always do things with my brother because it was the boy he always wanted, and quite honestly I think he is afraid of her condition, and my mother would focus her time on my sister because of the extra help she needed. I always felt like I was in the way. I unfortunately wasnt given the opportunity to express my feelings of neglect to my parents without being told I was wrong to feel that way, or that I was selfish for not understanding my sisters needs. I am now 30 and have just started to open up to my mother about my feeling of feeling like the 5th wheel. I love my little sister with all of my heart and would do anything for her. None of this is her fault, nor my parents (to an extent). There needs to be more education to families on the emotional roller coaster siblings can go through. When children are diagnosed with a disability, I wish there was some sort of support offered by a therapist or counselor for the rest of the family. And if there is I am not aware. Because of this disability, my parents and I are not as close as I would like. As I have stated earlier, I have expressed my felings recently to my parents and I, again, have been told I am being ridiculous. I have taken a step back from them to allow them to see just how much effort I myself put in to trying to form a relationship with them. Needless to say, we dont talk much. It is heartbreaking what we siblings can go through and feel we have to hide all these emotions. I feel, to this day, I suffer when it comes to expressing my feelings to others. I keep everything bottled up inside.
Thank you everyone for listening to my story. I have never shared this much with anyone before.
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I am crying, I am a triplet and when my brothers and I where one the doctor diagnosed them with Autism. This is exactly how I feel and felt. I’m sure my older two sister would agree. Thank you!!
I am the sister of a Developmentally Delayed brother, whom I now care for since my parents passed away. We are now both in our 50’s with a year difference in our age. I do agree with the descriptions above, but I would like to say that in my own experience growing up there is another experience that I hardly hear anyone talk about. The one that happens when parents are in denial. My brother was passive and did not behave in a way that caused attention as he was growing up. This allowed something to happen in our family dynamic that I haven’t heard to many people talk about. I am not sure if there is a name for it. What happened as I grew up was that my normal abilities where down played. In a sense there was a type of avoidance of my normal abilities and I feel I wasn’t appropriately supported through out my childhood. I could say that maybe my abilities where down played so he is disabilities wouldn’t seem as bad. This was not done intentionally, and I believe that my parents loved me with all their heart. But, they never could come to grips with the fact that my brother was never going to be independent. This lead to a very difficult situation for me emotionally. I guess you could say there was a type of emotional neglect that happened. It was and is very difficult for me to deal with the fallout of growing up in this way. Now that I have to take care of my brother, I have to fight resentment. My parents and I never once discussed my brother’s future or my part in it. Now, it’s like a full time job that I have on top of my full time job. I love him, but he has taken over my life. I did experience all the things written about in this article. But the part that says that the “normal” sibling is held to a “higher expectation” is where I stumbled. I, in a sense, was held to a lower expectation. I was wondering if anyone else has had a similar experience growing up.
My situation was not quite the same, but I always felt being smart or competitive were definitely downplayed at our house. My older brother is developmentally disabled and he wouldn’t have cared about grades, if he even knew what they were (he didn’t).
Another thing unmentioned in this article is fear of your sibling. Depending on the disability, this can be very real. I hate all the sugar-coating.
Thank you for the share!
I Love your blog. I have a disabled sister who is 15 months older than me. Our mother dressed us as twins during childhood, as we were the same size. My husband and I moved her into our home after the passing of my parents. She lived with us many years until I felt I could no longer take care of her properly. She lived in a home and went to a day care for the disabled during the day. Her medical records stated that her food was to be cut up and she was to be watched while eating. Last December, the day care was having a Christmas Party. No one watched her as she ate whatever treat or food she stuffed into her mouth. She choked to death that day.
Not only do I have the emotions stated in this article, now I deal with the guilt of trusting others to take better care of her than I provided for her.
Thank you for this site.
Holy moly I couldn’t imagine. This is why I too opened an adult day care facility, residential housing, employment opportunities, and community access in my hometown because I wanted to have services I could be in control of. My clients are now all my brothers and sisters. I am so sorry for you loss and thank you for sharing.
My older brother and I have a younger brother with mild cerebral palsy and many birth defects. We are all in our 60s. My younger brother has a speech defect, poor hearing, eye problems, one foot larger than the other for which he has had surgery, dyslexia, and other learning disabilities. Yet he has a low-normal IQ, an amazing vocabulary, can drive on his own anywhere, knows an amazing amount of facts about sports, and has always held a job, although they are the low-paying, low-hours types of jobs like dishwasher, grocery sacker, etc. He suffered awful bullying through school, was put in classes with severely mentally challenged children who were nothing like him, has never had a girlfriend (he would love one), and has had one close friend who, we discovered, was trying to get money from him constantly. My parents and I have always over-protected and over-bossed him. I remember feeling so loving towards him as a child, but also embarrassed because of him, which led to much guilt.
Our brother has become much more withdrawn in the last few years, angry and resentful, and very overweight. I think this is because of how unfair his life has been, and how he has been treated. It’s directed at my older brother and me, too. I understand how that could be, and I’m very sad and guilty about it. My mother, 87, has always blamed herself for his disabilities. She is hellbent now on making sure he is well-provided for when she is gone. They live together, and they help each other when one is sick or the other needs anything. She is worried sick about him, too, and always has been.
I wonder now why my brother and I have remained so immature and dependent on our mom. We rely on her to help us out of $ issues, we rely on her wisdom, and we have remained scattered, rather irresponsible people. Is it obvious to everyone but US why that would be? Is the big factor here our little brother’s life-long struggles with his disabilities? Did we remain “children” too long because we had to grow up too fast? Obviously we need therapy. And what can we do to help our little brother now? We remain a close, loving family, but the underlying problems are not letting themselves be buried any longer.
I really enjoyed reading your post. I appreciate what you have said and have felt everything you wrote about. I too write about what it is like being a sibling to a brother with disabilities. My brother is 15 months older than me and 6 years older than my sister. We definitely have a different perspective on life because of his disabilities. Thank you again for sharing!
Where could I read some of your writings?
This is a great article. I grew up with an older autistic brother and went through a lot of those feelings. I share them in my middle grade novel No One Needed to Know.
“Be a door”. My brother has been gone for over 30 years, yet this article brought out so many emotions. I hope that I was a door for him.
Thank you. I am the youngest of four and am the one with the “disability.” It was good for me to read this. Im sure they went through all of these feelings but also tried to be the door for me and still do.
I can relate to so much of what you wrote in this blog. I have a special needs brother who I am now and have been legal guardian for since our mother passed away 13 years ago. There has been many ups and downs but I feel so blessed to have had the opportunity to grow up with my brother. He has taught me so much.💙
Thank you!!
Carrie
Thank you. I had a younger brother with learning disabilities and in the 1970’s most people didn’t get why it was so hard. Fortunately for him, my mom was a teacher who KNEW something was wrong and worked hard to get him the help he needed to be a success. But I took the brunt of his anxiety, anger, and issues because I was safe and would love him. Of my three children, two have special needs. One is autistic and one has apraxia. My oldest is the “normal” one. I found it interesting that his college essay was along similar lines as this blog. That his life challenge was being the normal one in a family with special needs siblings. All the things he gave up (a room of his own). All the social anxiety of everyone knowing he was “T’s” brother. I shared this with him and hope it helps him continue to move forward.
Thank you for sharing this! I can relate to a lot of these feelings, especially when I was much younger and my sibling was in and out of hospital a lot (child jealousy is a funny thing). Really insight post and I will be following 🙂
– James Peacock
Excellent and thank you. My brother n law has MS and we have been dealing with mobility issues for some time. We have learned a lot over the last 20 years. Thanks for posting this.
I can relate it very much. As I also had a brother with disability. You explained it very well I am gonna second that. I will be following to read more related content like this.