Sibling questions are always a bit awkward because my only sibling died when I was in middle school.
Growing up with a brother with special needs has shaped me in so many ways to become the person that I am today.
My brother, Brian, was born with cerebral palsy and was non-verbal and confined to a wheelchair. He communicated with his eyes, laughs, and tears. I didn’t have a typical sibling relationship with my brother because of his limitations.
I’m sure that I still had emotions toward him that siblings normally extend to each other like love, anger, joy, resentment, jealousy, pride, embarrassment, etc.
He just didn’t get to verbalize it back. I’ve often wondered if his experience of his time on earth was like having a perfect mind and a crippled body.
I’m fascinated by how much technology has advanced with opportunities for communication to those who are also non-verbal now.
I can only imagine how frustrating that would have been or what it would be like to watch others do what you can’t.
I’m sure that I also scared my brother multiple times when I would practice my cartwheels a little too close to his face.
We did get to witness his expression of joy when his face lit up as loved ones entered the room.
He loved when my neighbor and I would push his wheelchair as fast as we could. He would laugh so loud, the faster we pushed him.
Regrets I Have Looking Back
I also have some regrets when I think back to those years. I’m ashamed to admit that at times I was embarrassed by him as a child. When I was growing up, kids with special needs went to a special school and rode a special bus.
Having a special needs sibling made me feel different when I just wanted to blend in.
I remember one time in 1st or 2nd grade, my parents came to my classroom Valentine’s party with my brother.
As a shyer kid, I was really nervous at first because I didn’t know how my classmates would respond to him. Many of them had never been exposed to someone with special needs before.
The kids warmed up to him as they met him and put my mind at ease that my family looked a little different.
As a teenager, I remember trying to be casual about my brother who was confined to a bed or a wheelchair when friends came over for the 1st time.
I also remember getting frustrated when I would help feed my brother through his feeding tube when his hands would flex and accidentally try to tug at his tube.
I remember one time yelling him and watching how startled and saddened he became in that moment of frustration that was out of his control.
I’m sure that my positive moments with my brother far outweigh the negative. Unfortunately, those three memories still sting me from time to time when I think of them.
Community Support is Vital
My family’s community was so supportive of us and my brother. Our church raised money for a lift to be installed on our van to make transporting my brother easier.
That lift was a game-changer! Especially for my mom who had to use incredible strength to get my brother in his wheelchair into our vehicle. Otherwise, she had to choose to stay home while my dad was working.
Friends of family and grandparents would help whenever possible to give my parents a break when they could. They gave us little freedoms that were welcomed respite.
As a kid, I proved to my parents that paying for a teenage babysitter was pretty pointless.
I did all the hard stuff, like feeding my brother through his feeding tube. I learned to be pretty responsible at a young age.
…Not so much with cleaning my room, but helping with my brother was a part of growing up.
My parents did a great job of modeling unconditional love. They took on the difficult task of raising my brother instead of putting him in a home which was recommended to them at the time.
My mom said that they would take him home instead and love him. She and my dad did just that until the day he died.
Parenting My Kids
As an adult, I don’t fully understand sibling relationships. My childhood experience didn’t function the way that most sibling relationships work.
My brother and I never had verbal or physical fights. I have a hard time navigating that as a parent now that I have kids of my own.
As a parent of two boys, I’m never fully sure about what amount of fighting is just “normal.”
I appreciate the risk that my parents took to have me, understanding the fears that must have consumed them at the idea of another child with health issues.
I appreciate the sacrifice and challenges that families with special needs children experience.
Constant trips to the doctor or hospital, challenging feeding times, long term diapers, lack of sleep, mounting medical expenses, loads of laundry from multiple outfits a day, transportation issues, and sleepless nights to name a few.
Special Needs Allies
I appreciate the people who support those families with special needs. Whether by occupation or friendship, it takes a village.
I’m so impressed by those who choose to draw in when others are drawn back.
As an adult, I’ve become more sensitive to the siblings of those with special needs. I think of them and empathize for all of the emotions that they experience in their daily life because I’ve been there.
I’ve learned that people only understand what they’ve experienced. Sometimes they just haven’t met someone who isn’t like them.
But if you help them understand, they will become better people because of it.
Life Isn’t Fair
I learned that life isn’t fair at an early age. Anyone who watches their loved one experience limitations witnesses that every day.
My brother lived to be 14. His 14 years on earth left an impact on my life and so many others.
I have several friends with children with special needs. I’m grateful that our society, in general, is a lot more accepting of people with special needs.
I’ve observed students in middle and high school classes who don’t make a big deal of special needs students in their class.
I think that separating students when I was a child made students less understanding. They were never around those who faced different challenges than they did.
As an adult, I’ve witnessed students in school settings display compassion, understanding, and empathy for students with special needs.
A Special Sibling Bond
Pictured above is a picture of my friend’s younger son’s trophy case. He is an incredible athlete who has an older non-verbal brother with Angelman Syndrome.
I have witnessed their special bond that goes beyond words. They model unconditional love every day.
The picture below says it all.
My sibling with special needs taught me, unconditional love, too.
I hope that this article is an encouragement to you if you can relate to it in some way. Our relationships with those in the special needs community can be some of life’s greatest gifts.
Thank you for sharing your story. We have a unique perspective on life because of our siblings with special needs. As an adult it gave me an even greater appreciation for my mom as the primary caretaker when he was alive. I’ll be praying that you also find support from other people who “get it” near you. It is a special club of sorts and people can only understand what they’ve experienced.
My sister with CP hasn’t been doing well lately, since a couple of years ago. Mounting medical mysteries; doctors and nursing, some useless, others trying their best to help heal a woman who can’t explain herself or her pains at all, marveling and hawing at my mother’s insistence these aren’t just little issues.
Tonight I called my mom to tell her a dumb story about my neighbors being too friendly, and when I asked how my sister was doing, my mother’s voice had an emptiness I only heard when my Dad was diagnosed with cancer. He recovered, thankfully, but… he was able to talk about his ailments. My sister, who now has varying levels of difficulty breathing after things like walking across the house, or eating nearly anything… doesn’t have that luxury.
This feels like a dark time, preceding a starless night. I’m scouring the web for something… anything I can find to help from four states away.
This letter, as I read it, encapsulates much of the confusion and maybe guilt we feel as siblings of people with special needs. The feeding tubes, the not understanding conflict or sibling relationships at all… I don’t know. This just really tapped me. And I wish I could find an ocean of the support I felt reading this… an oasis in the desert.
I hope that you’ve found healing, and that the sun shines for you again. I hope the sun will shine a little longer for us. And I hope it will come back once the moon makes her debut.
Thank you. Love and peace to you.
Love this! I need this kinda post to get stronger to myself after getting lost to my sister recently, she was blind and deaf!
Wow! I can only imagine the sacrifice you have made to care for your husband’s brother. I’m so sorry to hear about the loss of your sister and I’m sure that your compassion and empathy for your husband’s brother is because of your childhood experiences with your sister. You have a lot on your plate and I hope that you are also able to rest and recharge while being a caretaker and spouse. I’ll be praying that your situation improves as your family adjusts during this challenging time.
We have no children but for 23 years my husbands brother has lived with us and a year ago he had a large brain bleed that left him paralyzed in his right side which requires much attention. My husband, is jealous of the attention I give his brother. We are in our late 50s. Strangely enough I grew up with a sister with brain damage and cerebral palsy, she died at 14 years old, I was 13. I believe my husband is jealous but don’t know how to reconcile husbands feelings.
We hopefully can progress smoothly some how.
I needed this! Thank you for writing. I too lost a brother with cerebral palsy and he was non-verbal and blind. He was my older brother. It’s hard to find support in the are of grief of siblings with special needs. I thank you for your article. Continuing on my search to find a support group. Many hugs!
Nedra,
I have read this before and loved it. You are a special young lady and I am so proud of you and so glad you are in my family.
Having a sibling and loosing one is very hard. I too lost a brother at a early age. This is hard, I think about my brother every day.
Love you
Remarkable bravery in this beautiful tribute to your Brian. Thank you for your gift with words Nedra…
Very proud of you Nedra and I am sure Brian would say the same.
We have the promise and hope that you will see Brian again with no handicaps and you both can catch up on what you both missed.
I love you!
Dad
PS: I also want to catch up on what I missed.