400 people seemed to nod in agreement when Caroline McGraw used these words to describe some of her difficulties growing up with a younger brother who has autism. Few among us would deny this truth of family life-whether there is a disability or not. The scene was theKern Autism Network Annual Conference in Bakersfield, California on March 14. The theme of the conference was "Understanding DSM5 and Family Dynamics."
With examples from her own life, Caroline enumerated what's hard in an honest clear voice:
- the unfairness of sharing attention
- being a third parent
- feeling one doesn't belong or fit in with peers
- guilt and shame
- acceptance of your sibling as they are
Caroline loved her brother dearly, yet she did not want her friends to see the chaos that his meltdowns caused. She was jealous of the attention his condition required of her parents. On the other hand, she felt responsible at times for her brother's care and disappointed in herself when it was too much for her. With a calm presence, she explained her own three key coping strategies:
- Honest conversations with parents and others about the struggles and joys
- Invaluable feeling of solidarity when connecting with fellow siblings
- Experience working as a caregiver for other individuals with special needs contributed to a balanced perspective.
Despite the difficulties, she wouldn't want a different brother. She could live without the meltdowns, but her love for Willie was palpable as she explained how she has come to appreciate "the inadequacy of language to express our deepest feelings and truths."
Her tale of anger, rivalry, and jealousy mixed with warm loving feelings can be difficult to acknowledge but an integral part of the reality that bonds siblings.
Check out Caroline McGraw's blog "A Wish Come Clear", inspired by Willie.
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.