Sibling Bonds
The bond between siblings can be a beautiful and powerful thing. It can be especially touching to watch your typical child interact with your special needs child. Whether they are teaching their sibling something or helping you deal with the ups and downs of the day, siblings are a wonderful thing.
[1]Malachi Roth (big brother) is autistic and has limited verbal skills. On the day he was introduced to his new baby sister, Millie, he gently patted her belly and said, “it’s okay baby, I have you.”
To celebrate Siblings Day, we asked parents to share their personal stories about the bond they see between their children.
Unspoken Bond
Niki writes of her 9-year old twins Jada and Maya who share a close and unique bond where words aren’t required. “They can sense and anticipate each other’s feelings and emotions like only twin sisters can. Maya is neurotypical and Jada is a stroke survivor who is non-verbal. Jada has significant cognitive and developmental delays and needs assistance with all aspects of her care. This journey hasn’t been easy, but together the girls are so resilient and they both use their strengths to help each other. Maya has been a voice and advocate for her sister and for other students at the school. She is a wise and compassionate young lady who would like to be a “life coach” in the future. Sometimes Maya feels shy and she loves the way that Jada can easily make friends and meet lots of new people everywhere we go. Together they make an amazing duo!” It’s no secret that life experiences shape the person we become. Growing up with a special needs sibling can promote the development of many great qualities; empathy and compassion towards others; resilience in coping with challenges; responsibility and dependability; patience and understanding in situations; and even the confidence to advocate for others like Meikele’s oldest daughter.
[2]Sisters, Meirav and Salomé, share a lifelong sibling bond; they were both diagnosed with severe/profound hearing loss at birth. These two adore each other, squabble, play and are undeniably deeply connected.
Little Advocate
[3]Meikele’s 7-year-old daughter loves to help her mom care for her younger siblings and even advocates for them.
Meikele writes of the bond her 7-year-old daughter shares with her younger brother and sister, who have a host of diagnoses. “She wants to understand all the things going on; one of them is changing her brother’s feeding tube. We put her off as long as we could and finally gave in to her assisting us after his tube came out on Easter morning. She knew all the things I needed and where they were. While I was deflating his button to put it back in…she gathered them all for me without being asked, and stood over my shoulder saying ‘Bubba! You can’t pull that out! It keeps you alive!’ while I completed the process. So we knew it was time and she was more than ready.” Meikele and her family strongly advocate for her brother and sister battling pediatric feed disorders. Meikele Lee is also the author of “My Belly Has Two Buttons” and “A Very Tubie Christmas”. (insert image with little girl holding button)
Children pick up what they see and most want to learn and help with pretty much anything. Sometimes having a special needs sibling means falling into certain roles that other typical children wouldn’t normally have growing up.
While there are many benefits, there can also be a lot of challenges. We see how selfless our children can be and sometimes forget they, too, can carry their own inner struggles.
[4]Katie Brewster was Homecoming Queen in 2009 with her loving brother, Zach, as her escort.
Sibling’s Struggles
Seeing their parent’s daily struggles with their special needs sibling, typical siblings often feel the need to be perfect as they don’t want to add to their parent’s frustrations. Things that bother them can get buried because they don’t want to make waves, but, in doing this, they can begin to harbor feelings that as a child they may not be able to explain.
Jealousy – Children value their time with parents and when it has to be divided, jealousy can come about in any home. It can become quite challenging for parents with special needs children and some siblings don’t always voice their jealousy because they have an understanding (albeit basic) for when and why you do things with the other.
Frustration – In typical families, siblings complain about each other all the time but when you have a special needs sibling, some can struggle to express how they feel. They might be embarrassed by their sibling and/or feel guilty for even thinking negatively towards them. They can begin to think that their feelings are minimized or ignored.
Worry & Fear – It doesn’t matter if your typical child is the older or younger sibling, it can still be easy for them to not understand everything that their special needs sibling struggles with; what they can and can’t do; or even what the future holds for them. This can cause them to worry about their sibling or even fear they might lose them.
Protective – Siblings can be protective of one another, but the level it can reach, when you have a special needs brother or sister, can be overwhelming sometimes. Dealing with “the critics” can be a lifelong battle for some; wanting to defend and protect their sibling and even educate others so that their sibling and family are better understood and accepted like anyone else.
[5]Maya supporting and comforting her twin, Jada, while in the hospital.
Isolated – The idea of Family and Home can look very different than typical families; maybe there are more doctor’s appointments and therapy sessions; maybe you attend support groups and advocate for your child on weekends. While your child might be used to quality time “looking differently”, it can be a very lonely feeling when your peers don’t understand your family dynamic.
Pressure – Some siblings of special needs children can put a lot of pressure on themselves to be perfect. Some might feel that they need to grow up faster to be able to help more, or maybe they think they need to push themselves harder to compensate for what their brother or sister can’t do. Pressures can come from a lot of places.
Resentment – Closely related to jealousy, resentment can build in any of us, for lots of reasons. Children thrive on having their parent’s attention and when most of it goes to their sibling, resentment can build; or perhaps you rely on them for certain tasks. Some can begin to feel like they are being asked to help too much.
[6]After weeks of not seeing his brother, Jaxson finally got to visit with his little brother, Jeffrey, in ICU.
Sibling Support
Sometimes I wish parenting came with a handbook or “Easy” button. It can be tough balancing the love, attention and support you give each of your children and it’s hard to know if what your doing is even right. It’s all trial and error. As parents, we welcome and encourage our children to help us, to learn and support one another, but as our typical children fall into certain roles, do we also fall into a habit of expecting that they will assume certain roles and tasks?
Organizations like the Sibling Support Project understand that siblings are special, too, and they need an environment where they can connect with peers that might understand their family dynamic. We all need someone to talk to from time to time and SibShops for siblings might just be a resource to get the support they need. Founded in 1990, Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns. The Sibling Support Projects specializes in providing family-friendly workshops on sibling issues, called “SibShops”, to parents, service providers and siblings of all ages.
To learn more about SibShops visit Siblingsupport.org [7]
[8]Allison Webber(19) has been Cassidy’s (17) “buddy” at Challenger Baseball for 9 years.
Helpful Articles
- Why Siblings Are Too Important To Ignore [9]
- Let’s Recognize and Celebrate How Special Siblings Are [10]
- A Letter to the Sibling of a Child with Special Needs [11]
- Balancing the Care of Siblings with Different Needs [12]
- I Am The Ghost of Your Future [13]
- Balancing the Care of Siblings with Different Needs [12]
- Engaging Siblings to Build Social Skills: A Relative Solution to a Complex Problem [14]
- Family: Where Life Begins & Love Never Ends [15]
Free Downloads
- How to let Young Siblings Know you Care [16]
- What Siblings would like Parents and Service Providers to Know [17]
This post originally appeared on our March/April 2018 Magazine [18]