It isn’t as if this is news to me. I have read enough books and articles to know that this is part of the package. The ‘autism is in your family package’. That one chapter, or sometimes entire book, dedicated to the topic of siblings. Siblings of a person with autism, or any disability, that is.
And so in my little family, my boys are the siblings referred to in the books. The children within the family that are sometimes overlooked or over-expected. Yet another person in the family who did not choose this experience and yet, has profoundly landed into it with no choice but to ride the wave.
One son was old enough when things started to show up in the girl that he was already deeply invested in his own needs and own wants that he rarely noticed anything but himself. His life was in full motion when she was starting to have identified needs beyond just being a ‘cranky’ kid. A diagnosis in his little sister was not about to stop him. Kind and compassionate, yes. Fully embracing what a sister with autism is, no.
The younger son has been,and likely always will be, the secondary life line for the girl. Born just two years after her, they became best friends and playmates while still in diapers. Years and years of him practically demanding to have input in her IEP and therapies, he has always been invested in her life and her learning. He was the perfect social model in play therapy and always seems to know when to keep quiet when the verbal prompts were thrown.
This is where the book chapter on siblings becomes familiar. He is 16. He is beginning to figure out who he is and that does not mean solely the brother of the girl with autism.
I see the struggle that is often spoke about in those books. The sibling struggling to fit into the family whose focus has been on autism. I sense that he is in his own grief process. He is too experiencing a sense of loss while also recognizing the simplicity in what is. He is beginning to pull away from being the watch guard. From the time he knew what disability meant, he has verbalized that he would be her caregiver when they both grew up. A few months ago when the day that I had her guardianship hearing he could not bear to go, instead he opted to go to school. As he has entered into teenage years he has less friends over and his own willingness to give in to the quirks of her life have lessened. The little things that used to mean nothing like her preferred seating in the car, have suddenly become questioned. Disability takes its toll. Flexibility and surrendering to things has gotten old.
And so I see before me this emerging man seeking to define who he is. Continuing to love his sister and yet pull away into his own self. I see him acknowledging his infrequent, but also very real, feelings of embarrassment, sadness, loss, anger, and frustration. I see him stepping out to seek approval from others when before those things did not matter. I see him wanting desperately to speak his own truth and create his own.
I see who he is. And my hope is that he knows without question that I see him. And that others see him.
He is a blessing.