Susan McBrine
Susan McBrine worked for 37 years as a secondary school English teacher, a special education teacher, and a mentor to new teachers in California. She is the co-founder of the Tuberous Sclerosis Alliance, a national medical research and support organization. She is also the mother of 4 adult children, one of whom had severe disabilities from tuberous sclerosis and autism.
Susan McBrine worked for 37 years as a secondary school English teacher, a special education teacher, and a mentor to new teachers in California. She is the co-founder of the Tuberous Sclerosis Alliance, a national medical research and support organization. She is also the mother of 4 adult children, one of whom had severe disabilities from tuberous sclerosis and autism.

Worry, fear, frustration, guilt, embarrassment, love, sadness, anxiety, stress, happiness, joy, grief, pride, resentment, protectiveness, anger, concern—these describe the full spectrum of emotions we feel as parents of a child with special needs. Much has been written about our journeys and our experiences. But often overlooked are our children without disabilities, who deal with the same emotions but may not always have the proper tools to cope.

As a parent of a child with a severe disability and 3 children without disabilities, it was through trial and error that I learned to understand and address the needs of all of them through the years. One of the most rewarding experiences for both me and my kids were Sibshops—community-run programs designed to provide opportunities for siblings of disabled children to connect and find friendship, support, and solidarity. While every family’s journey is different, I am sharing my experience in the hope that it can help someone who may be going through the same thing.

“Like parents, siblings of children with special needs often struggle with complex emotions like embarrassment, guilt, worry, fear, and anxiety.”

Like parents, siblings of children with special needs often struggle with complex emotions like embarrassment, guilt, worry, fear, and anxiety. Many times, they don’t fully understand their brother or sister’s diagnosis or disability and don’t have the proper tools to explain their sibling’s condition to their friends. This can leave them feeling embarrassed, and ultimately guilty, if they choose to distance themselves from their sibling. These children can also feel like they’re not getting as much attention from their parents as their sibling is and act out in response. They often experience fear and anxiety about the future. They worry whether their brother or sister could die, or what will happen to them in the future when their parents eventually pass away. As parents, we sometimes forget how observant children can be and fail to protect them from the “adult” conversations we have as we deal with the strains on our time, finances, and marriage. These are large burdens for a child to bear, and they often struggle in secret so as to not add to our worries. Yet, despite all that siblings of children with special needs may cope with at a young age, they often learn to be more empathetic and understanding in the process.

I know firsthand the challenge of trying to provide the 24-hour care and supervision for a child with disabilities while also trying to provide a happy, normal childhood and home environment for children without disabilities. It is a daily struggle, and many times I felt like a failure. But I can tell you that no one is perfect and it’s important to seek outside help. Not just for your child with disabilities, but for your children without disabilities as well. The most important thing is to educate your children on their brother or sister’s condition. If you don’t feel like you have the proper tools to do this, there are many resources and books out there that can help. Let them know what caused their sibling’s disability (they sometimes think they can “catch it”), how to explain it to others, and why certain medical procedures are necessary and helpful. Make it clear to your child that it is not their responsibility to raise their sibling in the future. Their only responsibility is to love and accept him or her.

“It is a daily struggle, and many times I felt like a failure. But I can tell you that no one is perfect and it’s important to seek outside help.”

It’s also important to talk about feelings and let them know it’s okay to feel angry or resentful or even guilty—that maybe you feel that way sometimes too. Let them know that you are always there to listen and that they aren’t bothering you.

Make sure to set expectations about their behavior and clearly outline that while it’s okay to feel sad or angry about their sibling’s disability, it is not an excuse to act out or misbehave. While my daughter Stacia’s disability put our family through hell, I also believe that it taught me and my other children to be more tolerant, kind, and patient people.

“While my daughter Stacia’s disability put our family through hell, I also believe that it taught me and my other children to be more tolerant, kind, and patient people.”

Thank them for their patience and understanding. Let them know that you appreciate their help, and praise them for it. They need to hear it. Even if you can’t give them all the attention you’d like to, make sure they know you are proud of them.

Read them books about other families who are raising kids with special needs. Click here for 10 great ones (or see the full list below):

https://www.friendshipcircle.org/blog/2016/08/04/10-great-books-if-you-have-a-sibling-with-special-needs

Try to give them special experiences and time away from their sibling with a disability when you can. One of the most rewarding ways to do this is through Sibshops. As I mentioned before, these are community-run programs designed to provide opportunities for siblings of disabled children to connect and find friendship, support, and solidarity. As a special education teacher, I had the pleasure of running Sibshops out of my county office for 3 years. My 3 children without disabilities also had the privilege of attending Sibshops.

Sibshops were started in the 1990s by Don Meyer in Seattle, Washington. He has written books and designed a training curriculum to help anyone who wishes to conduct a Sibshop for a few hours or a full day. The Sibshop curriculum is used internationally to set up workshops where siblings can meet other sibs, talk about the good and not-so-good parts of having a sib with special needs, play games, learn how other siblings handle sticky situations, learn about the services their brothers and sisters receive, and ultimately, have fun. While Sibshops were developed for sibs in the 8-to-13-year-old age range, you may be able to find local Sibshops for children as young as 6 or for teens older than 13.

According to a 2005 University of Washington survey of adults who attended Sibshops as kids, more than 90% of respondents said Sibshops had a positive effect on the feelings they had for their siblings. More than two-thirds of respondents said they learned important coping strategies, 75% reported that Sibshops affected their adult lives, and 94% said they would recommend Sibshops to others.

“More than 90% of respondents said Sibshops had a positive effect on the feelings they had for their siblings.”

When I ran Sibshops in my local community, one of my favorite activities was to have children create a collage about themselves and their siblings using magazines and drawings. This is a great way to encourage kids to express themselves and their feelings more freely. We also had a panel of older siblings who were there to answer questions. Children could submit anonymous questions or ask aloud. Sometimes it is just comforting to know that others are going through the same thing as you and that you’re not alone.

“Sometimes it is just comforting to know that others are going through the same thing as you and that you’re not alone.”

Parenting is hard. Parenting a child with a disability is 100 times harder. It’s hard on us, our marriage, and our entire family. We don’t get an instruction book, but we can learn how to cope and function better with greater happiness by seeking support from books, resources, and organizations like Sibshops.

To find a Sibshop near you, visit: https://www.siblingsupport.org

Another helpful resource: https://www.parentcenterhub.org/siblings

10 great books for siblings:

  1. Oh Brother! Growing Up with a Special Needs Sibling by Natalie Hale
  2. Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs by Donald Joseph Meyer
  3. Living with a Brother or Sister with Special Needs: A Book for Sibs by Donald Meyer and Patricia Vadasy
  4. Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs by Kate Strohm
  5. The Sibling Slam Book: What It’s Really Like to Have a Brother or Sister with Special Needs by Don Meyer
  6. The Other Kid: A Draw It Out Guidebook for Kids Dealing with a Special Needs Sibling by Lorraine Donlon
  7. Special Siblings: Growing Up with Someone with a Disability by Mary McHugh
  8. Special Brothers and Sisters: Stories and Tips for Siblings of Children with Special Needs, Disability or Serious Illness by Annette Hames and Monica McCaffrey
  9. The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults with Disabilities by Don Meyer and Emily Holl
  10. Just Because by Rebecca Elliott

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