The Unspoken Responsibility of Siblings with Autistic Family Members
Growing up, I always felt the need to explain my sister Sophie’s behavior to others. Whether it was her sensitivity to certain lights and sounds or her repetitive actions due to OCD, I wanted people to understand her. As she grew older, I realized that my role went beyond just explaining her actions – I would eventually become her primary caregiver.
A Life of Privilege, Yet Uncertainty
Sophie, now 21, has made tremendous progress. She attends a day program and lives with my mom and stepdad. While we’re fortunate to have access to excellent resources and support, I’m acutely aware of the weight of responsibility that will soon fall on my shoulders. My mom’s answer to curious adults – “She’ll probably live with Hannah” – always left me feeling uneasy. It’s not fair to expect me to take on this role, but I know I must.
The Burden of Guilt and Uncertainty
As I build my own life and career, I’m torn between pursuing my goals and preparing for the added responsibility of caring for Sophie. Will I be able to provide for us both financially? Will I be able to balance my work and personal life with her needs? The uncertainty is overwhelming, and guilt has become a constant companion.
Planning for the Unknown
Recently, my mom and stepdad drew up their wills, naming me Sophie’s legal guardian. This sparked a flurry of questions and concerns. How will I balance my career with her needs? Will I be able to give her the life she deserves? The unknowns are daunting, but I know I must start planning.
Taking Control of My Future
To prepare for this new role, I’ve begun having open and honest conversations with my parents about Sophie’s future and mine. We’ve discussed the various options available, including residential programs and resources in our area. I’ve also taken steps to secure my financial future, applying to Master’s programs and setting up savings accounts. It’s a start, but I know there’s still much to learn.
You’re Not Alone
If you’re a sibling of someone with a disability, know that you’re not alone in your struggles. Reach out to those around you, and don’t be afraid to seek help. It’s okay to feel overwhelmed, but by taking small steps towards preparation and planning, you can begin to build a brighter future for yourself and your loved one.
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