This guest post is by Caroline McGraw an author, speaker, and sibling of an adult on the autism spectrum. An earlier version of this post was published at A Wish Come Clear, a blog for recovering perfectionists.
Willie had been talking about his twenty-fifth birthday since, well, the day after his twenty-fourth. At regular intervals, he’d announce, “On May 10, 2012, Willie will be 25 years old!” And then our parents would gently prompt, “I will be … ″, and he’d say it back, proudly, “I will be 25 years old.”
Though Willie and I have vastly different personalities -- at any given meal, he eats his favorite item first, and I save the best for last -- our love for birthdays is a shared trait. Growing up in our house, birthdays were a big deal. For example, our mom started a tradition of hiding birthday gifts, leaving a treasure-hunt trail of Post-it notes. Each Post-it contained a rhyming clue to the location of the next Post-It. The final note would rest atop a cache of presents.
As Willie’s 25th birthday drew near, I missed him more than ever. But I had a speaking engagement; on May 10, 2012, I gave a talk about my time as a special needs caregiver and program director, entitled, “Not a Burden, But a Privilege”. It was a bittersweet experience to give that talk on Willie’s birthday, yet also entirely fitting. If it wasn’t for Willie, I’d never have gone into special needs caregiving in the first place.
I went into the field because of the intense difficulty our family went through with Willie. I served as a caregiver because I wanted to offer (and receive) the kind of unconditional acceptance I couldn’t summon when it came to my own brother. So it was penance, perhaps, but it was also a kind of defiance: if I couldn’t ameliorate my brother’s difficulties, I could at least use my life experience to benefit others.
Willie started having major meltdowns when he was fifteen. One minute he was proudly enrolled as a special-ed freshman in the same high school as me; the next, he was being expelled for out-of-control behavior. Some combination of biochemical changes meant that my formerly easy-going brother became self-injurious, even violent. During the worst times, I was afraid to sleep in the room next to his.
But then, I was afraid to be awake, too … afraid to see the new injuries, to hear the sound of sorrowful weeping at the end of every episode. He always expressed remorse afterward, and I was haunted by the knowledge that he didn’t want to cause pain, but somehow couldn’t help himself.
Our family tried every viable therapy, intervention, supplement, and medication, but there was no magic bullet. Instead, there were ups and downs, progress and reversals, and slow, incremental change. Willie’s twenty-fifth birthday marked a decade of difficulty, a long-term struggle to - in the words of my brother’s oft-repeated prayer - “please help Willie be calm.”
Given all that, it was surreal to find myself shopping for Willie’s birthday present with this peaceful acknowledgement: whatever I choose may well be destroyed by the end of the month. Even so, I took my time browsing through books on Amazon. Willie loves dogs, so I picked a dictionary of dog breeds. I chose a pocket edition because Willie likes to carry books with him wherever he goes, and also because I didn’t want to spend too much on something that might end up shredded.
But by some miracle, the thought of the book being destroyed didn’t bother me. Somewhere along the line, I’d stopped rebelling against the facts of my brother’s life. Buying that birthday gift represented a place of acceptance I never thought I’d reach.
That said, acceptance doesn’t mean passivity. Our parents still do everything in their power to help Willie manage his behavior successfully, and he has come a long way. Today, he attends a day program that he loves. He writes me letters containing stunningly beautiful sentences such as, “I had a good day,” and “I ate lunch with my friends.” Still, I wish, hope, and pray that there might come a time when he’s free of meltdowns for good.
But as I purchased that dog dictionary in 2012, I felt the truth of what I can and cannot do. I can buy a good gift for my brother, but I cannot control how long it will last in his hands. I cannot change Willie, but I can love him. It was a moment in which the Serenity Prayer became real for me, as I was granted “the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”
Yes, I still sometimes struggle to accept Willie as he is. I still feel anger and terror and grief when he melts down. But I’ve come to see that those feelings are not my only truth. They are part of how I feel, but they are not the truest part.
Amidst the applause after my talk on Willie’s twenty-fifth birthday, I silently sent a message to him saying what was - and is - most true: Happy Birthday, Willie. I love you and I’m proud of you. You’re the reason I’m here tonight. You have taught me to see through eyes of love. Thank you.
Click here to download Autism Speaks Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.