When my mom gave birth to my sister and heard the words "Down syndrome," she sunk into depression and spent hours rocking Syble and whispering how much she loved her, but how ill-equipped she felt to raise her. Fourteen short months later I was born and earned the nickname Sunshine, partly because Mom was pulled out of her depression and partly because I got up with the sun each morning.
But as we got older, I didn't always feel like I was in the light. Being known more often as "Syble's sister" than even by my own name in our small town, I was a shadow sibling—in the background, not feeling like I got the same attention my sister got.
Last year as I sat down with a therapist to talk about the changes our family had gone through and the coping mechanisms I was using, he asked, "What's your motivation for being a perfectionist? For putting others' needs before your own? For being on the passive-aggressive side instead of being honest about your needs?" Taking a few seconds to think, I decided it was because I never wanted to cause my parents any extra work, not require any more from them than I absolutely needed. That meant I made good grades, followed their directions the first time they told me what to do, and did everything as independently as I could. My personality was shaped by being a shadow sibling.
Now I'm not only a special-needs sibling, I'm also a special-needs parent—raising a son with autism and a typical son. Because of my experiences, I can see him struggle in the same ways I did. For attention. For his place in our family. For his opinions to be heard.
A few weeks ago I talked to a man in his 50s who grew up with a brother with mental illness who was often violent as they grew up. I also have a friend in her early twenties who grew up with a sister with a heart condition that kept her in the hospital for weeks at a time. Even though we all had different circumstances, our feelings were the same as shadow siblings.
How can church families care for people like us? Siblings who feel neglected and ignored?
- Take time to get to know each member of the family as individuals. As I grew up, church was my favorite place to go, a place I was known as Sandra and not just Syble's sister. My Sunday school teachers valued me and encouraged me. They noticed when I was quieter than usual and asked me (and I assume also asked my parents) what was going on and if they could help in any way.
- Help the special-needs siblings understand God created them with unique gifts. We can often feel like there's nothing special about us, especially compared to our siblings. My youth group leaders were great about not letting me believe this lie. They saw my gifts, spoke encouragement over me, and gave me opportunities to use my gifts
- Teach them God has a plan for their lives, and that plan includes using all their struggles and strengths. "Why did this happen to me? To my family?" is a question we ask from an early age. I needed to know that my suffering wasn't a punishment from God, and that He had a purpose for me and my life that included all the lessons I was learning as I grew.
- Validate and not shame them for how they feel. There were times I was angry. There were times I was sad. There were times I was jealous. And all those feelings were ok. I was a child and a teen and certainly immaturity and hormones magnified those emotions at times. The adults around me patiently listened and encouraged me.
- Be a safe place when they need it and provide for their practical needs. There are many Sundays I wish David's friends' families would invite him to come over so he could have some time off from being James's self-appointed guardian. Other families may need help when a sibling is in the hospital. Or maybe just slipping a $5 gift card to the typical sibling to say, "For a great big brother!" or "Just because you're you!"
- Provide respite care and/or support groups. Our small church in Pennsylvania offered respite nights every other month. David could either go and enjoy being around other special-needs siblings, or have alone time with just us. Churches can also offer space for sibling support groups to meet or host them. I am still in contact with other special-needs siblings I grew up with and now we ask either questions about long term care options and having guardianship of our siblings. These friendships formed thirty years ago in the classrooms of our church.