This post is generously submitted for the 2011 All About Autism Series ~ by Sara Winter:
I have an eleven year-old nephew on the autism spectrum. I’ve been lucky enough to be his therapist at home and at school these past nine years. Watching him navigate his daily life has been the most impactful experience in my life to date.
One of the most valuable gifts my sister has given my nephew since his diagnosis in 2001, was to find the right people to make up his team. He’s had countless consultants, a small army of therapists, and many other specialists in medical and sensory integration practices.
Many times, she fired people if they weren’t working out. Other times, my nephew’s growth exceeded the relationship and he moved on.
In my opinion, my sister’s management of this village, and her ability to really understand and accept our strengths and weaknesses (from family members to therapists to teachers) is the single thing that has offered the most support to him these past nine years.
I have been with my nephew at home and at school pretty much every day since January 1st, 2002. We’ve done just about every therapy out there for remediating autism.
Loving him has never been a problem. Caring about his success and setting him up for it has been an obsession. But learning to let go? Not so easy.
In the beginning, I was his translator. My nephew was at a place in his development where he was communicating with his behavior and his physiology, but not so much with his words. Teachers would ask me questions about him, as opposed to directly to him, and his peers would follow suit.
When he was small, it seemed natural to speak loudly as his advocate. After all, wasn’t it my job to protect him from this unpredictable crazy world of sensory overload and misunderstanding?
But as he got older, it became a question of respect, and I was so caught up in loving him, I had lost all objectivity.
Enter Lisa Palasti, our gifted RDI consultant to offer some support to begin the process of guided participation. The first step was regulating myself before I could even begin to approach the idea of co-regulation with him. She showed me that perhaps my nephew needed some space to make mistakes on his own.
We started with the tiniest of baby steps; a glance here, a body position there. If I had to leave the room so I wouldn’t sabotage his independence, I did. All the while, spending my time and energy covertly scaffolding behind the scenes.
There were many days where I got strange looks from the teachers, as if to say: “Aren’t you supposed to be doing something?” But I forced myself to fade back, and put the classroom (and my own) agenda and pacing aside.
Instead of answering for him or over compensating, I started to delay my responses, giving him time to entertain one of his own. This was a game changer for him. I fought every “do this’ impulse in my body to start to become a co-conspiring, co-experiencing, co-regulated guide.
I started to be able to step back and let other people in our school community step up; teachers, kids, staff, even other parents. Within 18 months, I was able to transfer responsibility to everyone in my nephew’s immediate community.
Most importantly, I was able to begin to transfer responsibility to him.
This was the foundation for him to begin to gain true competency and the first seeds of real confidence at school.
What happened was that all of those people allowed themselves to be moved by him, have moments with him, and see things from his perspective; the effect he has on every person he touches in his community is an inspiration, and renews my belief in humanity.
His strength and pure heart make us all better.
At just eleven years old, he’s created a circle of support around himself: people that get him, guide him, and love him for who he is.
I could never repay him for the gift he’s given me; to be privy to the nooks & crannies of his daily life has changed me forever. I’m humbled by his strength and sweetness, and for the unmarked trail he blazes every day.
Sara Winter is a mom of two boys, and the founder of Squag.com, a new application designed to empower kids with ASD and help them break down the big idea of friendship.
I too have found myself having to move myself back, allow for my son to make the moves he’d like to make, speak for himself…though I still have a lot of work to do in this area. What about you?