All About the “Special Needs” Sibling

Hey everyone! I’m so excited to be bringing you another crowd sourced post today in which I asked my Instagram followers (you can follow me here) to give advice to us parents about how we can best help our kids who are not disabled, alongside their disabled siblings. That’s a mouthful, basically what about those “special needs” siblings? I asked for input from both adults who were raised with a disabled sibling, as well as kids who are currently being raised with a disabled sibling. I received a lot of feedback–which was wonderful–but in the interest of length, I couldn’t include every answer to every question. Please know, that as a fellow mother of a child who is disabled and two children who are not, this post is meant to be helpful. This is not meant to add to the stress and guilt already inherant in motherhood, and often amplified in raising a child with a disability. As always I’d love to hear more thoughts and even questions in the comments below!

From Kids
What is the best about having a sibling with a disability, and what is the hardest part?

Quinn, Tennessee
The best part about my brother having a disability is that it showed me that people, like anyone with a disability or difference, are just as special as me. Like, they deserve all the same things as me. And people who are different than me can show me the most amount of things I don’t know!” “The hardest part of having a brother with a disability is sometimes he can’t say with his words when he’s mad and he can push me. So sometimes I do it back because… well… that’s fair. Right? (haha! I think so Quinn!)

Cruz + August 
Best: Getting to help her try to walk.
Hardest: Having to travel and be away from home for surgeries

Emmett
He loves to play and be creative, just in different ways. The hardest part is when he destroys my stuff and also when I have nightmares that something terrible happens to him.

Nannie, Utah
You understand how others are feeling and how to help them. The hardest part for me is that I can’t see my friends and I miss out on a lot of social activities. I give up a lot of social opportunities and activities to help keep germs down and my brother safe. I have a lot of extra responsibilities in my home, especially when my brother is sick. Its hard to see him struggling and knowing I can’t give him the help he needs.

Scout, Idaho
It teaches me to be kind to others because something else might be going on that you can’t see, and it teaches me to always be patient because things will always be harder for him. The hardest part is that he sometimes takes all my parents attention.

Is there something you wish your friends at school, or other kids in general knew about your sibling?

Quinn, Tennessee
“I wish more kids knew that he is really fun and wants to play and be close to you. He just like me, and he’s not a baby. My friends love my brother, I only see strangers being weird about him….”

Cruz + August
That she’s different. And that’s a good thing.

Emmett
Yes, that if you ask him stuff and he doesn’t answer don’t get mad. That he has a hard time understanding at first, but he mostly answers. Just be patient.

Nannie, Utah
He is so strong and so brave and I am so proud of how far he has come.

Scout, Idaho
That he really is kind and funny and awesome. It’s just hard to figure him out sometimes.

What advice do you have for parents for loving and raising their kids who are not disabled? 

Quinn, Tennessee
I think parents should tell their kids (without a disability) that you’re still unique even though you don’t have a disability. And that your job is to treat yourself and your brother exactly the same. And also tell the principle of someone parks in the handicapped spot at school.

Emmett
Treat them the same way–nicely. We’re all cool with sharing my parents they love us all so much.

Nannie, Utah
Make sure that you treat them equally and make sure that they know that they are loved and needed. And make sure that they get special one on one time with you.

Adults
What did your parents/family do “right” as they raised you in terms of caring for you and a sibling who was disabled? And what do you wish they would have done differently? Now that you’re an adult, do you have a different perspective of your childhood? And if so what specifically has shifted?

LeAndra, Utah
Did right: loved my sibling so well. It was easy to see that this child wasn’t ‘less’ in their eyes. Involved us in her life and care.
Wish they’d done differently: talked to us about how they were able to keep going & heal. We kids all saw and were affected by their mourning and abrupt shift in circumstances; but there weren’t a lot of conversations about how they were finding answers & getting the support and resources they needed. It left a gap between the lived experience & trauma, and the loop of closure of coming to peace & healthy spaces after life didn’t go the way they expected. [I have] a deeper gratitude for the love my parents poured out on their disabled child, and a mourning that that same type of love didn’t always feel accessible for me, the [non-disabled] one.

Laura
Right: Not attempting to make everything fair. (Dr. Becky at home has great insight on looking in instead of out regarding this)
Different: I wish everything I accomplished was not lumped with everything that my sister would not accomplish. (ie: at my graduations, etc.I never heard ‘Yay for you!’ I only heard ‘You’re so lucky– Elaine will never have this.’ Then my mom wondered why I was “so afraid of success”, lol. Therapy would also have probably been a good idea but it was the early 2000s and not as common as it is now. Becoming a mom has given me a lot of compassion for my mom. She was doing the best she could, which I always knew intellectually, but now I know more fully what that may have looked like day-to-day.

Kiri, Ohio
My parents always made sure that we were equally taken care of in our individual needs. For example, When my brother would have a seizure my mom would make sure he was okay, and then make sure I was okay, because it’s really hard to see your sibling go through that. i wish my parents had told me it was okay to come to them with my problems. I always had it in my mind that since I was never going to be “as bad” as my brother, that my struggles weren’t valid, when in reality my struggles look very different. It’s left me to be very independent with my needs rather than allowing others to help.

Anne
My parents were active leaders in support groups for other parents of kids with disabilities (particularly with the United Way) so we were frequently around families with at least one kid with cerebral palsy or other diagnoses. Disabilities became normalized for most of us siblings through our play time while parents held their group meetings. Siblings of disabled kids “get” each other in a way. Even though our day to day situations were often very specific and different, there was also an immediate similarity to the challenges we faced too. I could have benefitted from therapy, but that wasn’t really a consideration for the non-disabled kids at the time.

Christy, Illnois
We were very involved in his therapies and learning. I am 4.5 years older than him and remember when he got sick with meningitis at 19 months old. It was truly a family sacrifice to get him hearing aids and therapy. We felt like we were in it together. At the same time they made sure we had mommy-daughter and daddy-daughter dates regularly. I never felt slighted because of his disability… He was also not treated differently from what I remember. He went to the same schools we did, played sports. I remember sticking up for him against playground bullies. I don’t know if I would change anything. I had a very happy childhood. I realize now how much financial sacrifice my parents did to make sure my brother had hearing aids and therapy and implants. Even today much of that isn’t covered by insurance. My parents had paper routes for years, sold a brand new van and bought a really ugly purple station wagon and did lots of DIY. But we took annual vacations and were involved in lots of activities and active at church so I never felt denied. I think they were probably very stressed out for a very long time.

Meg, California
They treated us as equals, but with allowances for who we were as people. I know it was a lot to balance – to have one kid with specific needs in special ed, and another with specific needs in gifted and talented and making sure we both got attention and opportunities. I remember once asking my mom why we didn’t get paid for good grades and she said something along the lines of number one, good grades are expected and number two, would it be fair for your sister not to get paid the same as you, even though she’s doing her best with her own challenges?

Katy, New Mexico
Full disclosure of my unique family setup: my older brother, Larry, had cerebral palsy from birth. He also had a twin sister that died two days after they were born. My mom had two other children, and was in a physically abusive marriage at the time. With all THAT going on after the twins birth, my grandparents took in my brother Larry for a time that was supposed to be temporary, but became much more long term. When my mom remarried (to my dad) and I came along, my brother didn’t live with us at home but I knew full well that my brother was living with my grandparents and that was totally normal to me. They devoted their life to him and cared for him so well. When I was nine, Larry came back to live with us. So there is our weird beginning. Having said all that: Larry wasn’t infantilized, we didn’t baby-talk, or pamper him. He couldn’t walk or talk, so thus required a lot of physical care, but we always had the attitude of treating him as “normal” a sibling relationship as possible. We made him laugh, he made us laugh. My parents were also devoted to his care, but included us and expected us to help in a way that I don’t remember feeling resentful for. He was our brother – and we care for one another. No one person could do all his care so we all stepped up in various ways.

Jennifer, Ohio
My parents had 6 children in total. Unfortunately the focus was very much on our younger siblings with DS growing up. Many of the things my siblings w/o a disability were involved in (e.g., sports) were skipped by our parents because they were so involved in care taking our three younger siblings with disabilities. As adults this pattern continues and our parents have lost out on so many opportunities to be involved in our adult lives including with our own children.

Katie, Indiana
My parents stuck together, and are still together 43 years later. They had a very rough marriage after my brother’s diagnosis (he is 2 years older than me) but they were both there for us growing up. They were also very honest in sharing their thoughts and feelings about things in their life that affected us. Knowing that no matter what was going on, that they would be there, and I was able to share freely with them everything I was going through, with school and friends, as those related to my brother, that was/is invaluable. As a kid I never felt out of place or lonely, but on reflection, we lived a very sheltered life. Few families in our community were accepting of my brother, but I never felt that because my parents did such a great job of creating a safe space at home for being 100% ourselves. They also worked really hard at protecting our safe space. We only interacted with people (friends and family) that were supportive and uplifting.

Mackenzie, Washington
They allowed me space to be myself and lots of alone time to recharge. My mom also always let me go grocery shopping with her, I think as a bit of an escape, which gave us TONS of one on one time that I cherished.

Dev
Involved my sister in everything possible! We loved it! We do the same with our disabled child. We never shy away because it may make things harder or different when we adventure. [Now that I have a child] with special needs. I wish my parents would’ve gotten more support or counseling for themselves. It’s hard stuff!

Erin, Massachusetts
Through adopting a child with special needs, my world grew vastly. Family is not a biological bond to me, and neurodiversity is as important as any diversity. I am more empathetic, more understanding, more patient. I would not be who I am today without my sister and she is forever a part of me. I am not the “other child.” I have a lot of trauma from having my needs overlooked for my sibling’s needs. I wish my parents would’ve realized that by prioritizing my siblings needs, they were inadvertently saying my needs were less important. I still feel abandoned. Kids are resilient but the don’t just “bounce back;” Kids often silently carry trauma for the family into adulthood. Even if your child is young, trauma still changes them. Not having the skills to process trauma yet is not resiliency, and ignoring that trauma is parental neglect. I am angry at my family, and hold a lot of resentment toward my parents. My sister is still the light of my life and I would never wish for a life without her. As my life has shifted overseas, however, I resent being seen as the backup plan for my sister’s care should my parents die. My life goals matter just as much as my parents’ want for children, and it is not my God-given duty to take over for my parents. It has nothing to do with a God-given imperative. If I choose to assume care, it is out of love and devotion towards my sister; it has nothing to do with the pressure of society and my family.

Madison, Illnois
Parents pursued some tools and aids that made things like travel and time away possible (safety sleeper, travel wheelchair, etc.) which allowed our family to do fun things away from home. When my brother had extended needs at the hospital when I was young, they leaned on family members to care for me and I really cherish those relationships and memories.

But, once our other brother was born, when I was 9 and then onward, I became full time babysitter/third parent. My dad was in the military and was frequently deployed. Afterschool time and weekends were spent helping my Mom. I couldn’t do homework until 7pm nightly. Part of the reason Matthew needed constant attention was that my parents wanted to have a lot of “stuff,” much of which was dangerous if Matthew got his hands on it. If my parents had committed more to a lifestyle and home that was accessible for my brother, and if they hadn’t viewed asking for professional paid assistance as a failure of their ability to parent, they wouldn’t have needed to lean on me for care and I could’ve had a more normal adolescence with better boundaries and respect for my own time. Instead, I have come to be valued solely based on my helpfulness rather than my interests, because helping always came before my personal life and needs. Recently I’ve come to realize that my parents don’t really know ME or my interests and goals. So when I look back on my childhood, I can see how they viewed me as a helper and not another child and that hurts. I’m still working with a counselor to make sense of that.

Joanie, Atlanta (she and her brother have Cystic Fibrosis)
My brother and I were never told we were different. I wish to a degree I was told I was different. That we had conversations about how I wouldn’t be able to work full time. It was always “God willing” I would work full time. I stopped at 27 because I couldn’t take it any more. I was too tired and too sick to continue. I just wish they would have prepared me for that transition. Today I mourn my normal that I had before my disability took over my life and my brothers. And I have no idea what the future will look like except this slow decay towards death. 

Kate
They did their best and I’m grateful. I wish we’d have done family therapy all along. We are so much closer as a unit now as adults because we are doing it.

Mack, Illinois
Let me first say that I love my sister dearly and now that I’m in my 20s I see things in a much bigger picture. However my parents relied heavily  on me for caregiving on weeknights and weekends once my older sister and I were teenagers. They both worked late so I’m not sure what other options they had, but it was frustrating to turn down plans with friends because I had to watch my sister. And then of course I would always feel selfish/guilty for feeling that way. One thing I appreciate is that my parents let us fight like any other siblings. My sister is fully capable of taking my attitude and dishing it back!! Yes absolutely. First, I am so much more protective of her. Growing up I would tease her in the way that any other sibling would, but there is a motherly nature to the way I feel about her now. A few months ago my boyfriend accidentally let the “R” word slip out of his mouth. I had never typically been sensitive to language but it made me instinctively burst into tears. (Let me note that he had NEVER said something like that before and apologized profusely. We had a good convo about it.) I also spend a great deal of time worrying about someone taking advantage of her, or what would happen if I died young and she was left alone after my parents were gone.

D. California
My parents did a great job giving me individual attention/taking me places without my sister. I really appreciated this because she got a lot more time in general.

Are you involved in your siblings’ caretaking today? If so, what do you wish you would have known when you were younger to help prepare you for this role? Feel free to share general thoughts and feelings about the overall situation.

Laura
I am somewhat involved, and plan to take over fully if my parents die or become incapacitated. I’ve been very involved since high school, which has definitely helped me feel prepared to transition.

Kiri
My brother lives in a group home now, but my parents are still very active in his care. They have to advocate for him at doctors appointments since they know him best. I know that when my parents are gone, and if my brother is still around, I’ll have to advocate for him. I’m 18 now, and as I try to figure out what I want to do in my future, i wonder if I have to factor my brother into those decisions. Do I need to have a good job if I need to start paying for my brother? If I want to move out of [town], do I need to bring him with me? I still have time to figure it out, and I know my parents will say don’t worry about it, but I still do.

Jennifer, Ohio
I am not involved in caretaking at this time but provide a supportive role with boundaries. I would advise parents to have plans established that do not depend on adult siblings being caretakers. I grew up being groomed to take over for my parents and will be unable to do so. There are many reasons that a sibling cannot caretake even if initially you think this will be the plan. And the adult children with disabilities may not want to live with a sibling. This is also very important to consider. Sibling relationships are complex and dynamic. Each family needs to work out what will be the best, but it is unfair to assume one of the other adult children will have the capacity to become a caregiver. Planning, including estate and special needs trusts are essential. Communication about desires, intentions, and actual plans – with all parties – is critical. I wish I knew earlier that recognizing I could not caretake did not mean I was a failure. Working with a good therapist familiar with disability, adoption, and family dynamics has helped tremendously.

Emilene, Connecticut
Yes and from day 1 as a toddler I always said he would live with me one day. He doesn’t yet but it’s still the plan. He spends every other weekend with me and the off weekends with our little sister.

Kate, Indinana
I am the primary caregiver of my brother, and my parents now (dementia). Growing up, around high school I was prepared for the idea of caring for my brother. It was always a choice though. Having to care for all 3 of them at once wasn’t discussed, because we didn’t think of the possibility of dementia… but it’s been life changing (mostly for the good) to be in all of their lives still.

Erin, Massachussettes
Yes, I am involved. I wish my parents would have known that I have felt overwhelmingly stressed about my sister’s long-term care since she was born. I wish they had been financially/socially preparing for long-term care, as opposed to just banking on the older siblings for care. I am not someone else’s mother and I don’t owe it to my parents to give up my livelihood for my siblings. Parents owe their children a voice (and a growing voice as they age and change) before assuming that the responsibility of life-long care should be the responsibility of surviving siblings. I love my sister. I want to be able to care for her and her needs in the future. Because of a lack of financial/social stability from my parents, I have spent my entire life panicking about if I could take care of my sister when my parents die. This is life-long trauma for me.

Kevin
Yes, he lives with me and my family. I just wish there was more resources for him to stay involved in the community without feeling like an outsider and more education on people with different abilities. People generally think he’s drunk because of the way he walks and talks and it’s awful for him.

Madison, Illinois
Yes. I am home two to three times a year for a month or so, and my parents view it as their time off. Even my fiancé has now been incorporated into the caregiving and he is expected to pick up the slack. I think if I had been invested in a little more by my parents, I would feel appreciated rather than expected. For me, the actual caregiving is easy. My brother is wonderful and time spent with him is not challenging, even though my parents always pitted it as him being the cause of the struggle. I would tell my younger self that it’s not Matthew, that it’s my parents’ choices to abuse my time and energy and feelings. That I CAN have a loving wonderful relationship with Matthew that makes space for my dreams and goals once I’m older and grown. Liz, New York
Not yet, but I imagine I will be. I wish my parents were more open to planning! They are in their 60s and in good health, and take it as an insult (or a scary reminder of their mortality) to plan ahead.

Joanie, Georgia
I wasn’t prepared for when my brothers disability would become my responsibility too, and that my adult family would have to pick him up and bring him into our fold too. I didn’t realize how much care he would need nor realized that may also be me. I have no idea how I will navigate the loss of his insurance or if we can financially pick him up for our insurance either. No one tells you about these parts.

Mack, Illinois
Currently my sister lives in a group home and I attend grad school in a different state. Once I am married/have children, I fully intend for my sister to move in with us. Growing up, I didn’t think I wanted that however now I couldn’t imagine it any other way. My parents have never pressured me about this and I am so grateful for that. I am a little stressed about the legal side of things (legal guardianship, medicinal decisions, managing her bank account, insurance) and am looking for resources to start gathering information about that.

Kate, Utah
Yes, I don’t think I realized quite how difficult it was working with my sisters different behaviors.

Thanks to everyone who participated! This is such a big and important topic.  If you have anything to add, please do so in the comments below! As always I encourage kind and helpful comments. 

Have a great Friday.
XO, 
Miggy