Earlier this week I had the privilege to interview Kim Stagliano, a prolific writer and mother of three autistic girls. In our correspondence she referred to me as an “Autism Warrior,” the highest of compliments. Apparently she assumed that, like her, I am an assertive, tireless advocate for my son; given my “Autism Dad” moniker, that would be a reasonable conclusion, would it not?
But I’m afraid Kim didn’t read the fine print. If she had, she would have realized that Autism Dad is a work in progress, a single dad trying to find his way in the dark.
An Autism Warrior I am not.
It wasn’t always this way. A couple years ago, after Ben’s diagnosis, I was reviewing research studies, searching for new doctors, scheduling appointments, picking up the boys from school, talking to the teachers, taking Ben to his psychologist and sitting there with the other moms in the waiting room. I made sure I was in that conference room, sitting across the table from my ex, for Ben’s IEP meeting. I was asking questions, fully engaged.
Then things changed. The economy reared its ugly head. No longer could we afford any treatments outside of the minimal services provided by the school district. This meant no more psychologist, speech therapist, occupational therapist, or music therapist.
The divorce came soon after. Somehow Heather managed to push through a court order that gave me one weekend a month with the boys. I will never know what was really going on inside her head and heart: Did she really believe that the less time with Daddy, the better off the kids would be? Whatever my flaws, was this really the best thing for the boys? I had shown time and again that I wanted to be an equal partner. Why couldn’t Heather see this?
It took months, but finally we got in front of a court mediator—a woman! My luck, I thought to myself: I get an FMM, a Feminist, Man-hating Mediator. (While I have always endorsed the goals of economic feminism, I will never endorse the brand that teaches that men are expendable). I sat there while Heather completely ambushed me, portraying me as unreliable and undependable. The attacks hurt like you will never know, but they also seemed wildly out of proportion, almost laughable, and I let them roll right off of my shoulders. It came as a great surprise, and great relief, when the mediator looked incredulously at Heather and questioned her version of events. She accused Heather of exaggerating and distorting things for her own agenda. And most important, she amended the divorce agreement so that I had more time with the boys, though not nearly enough.
This was in spring. I began picking up the boys after school; they’d spend the night with me and the next morning I’d get them to school–not once was I late. The teachers and administrators began to recognize me. It felt good to be involved. One morning we arrived well before school started, so I escorted the boys to the cafeteria for a light breakfast. I sat there in a miniature-sized chair and made sure they ate a little something.
After summer break, things changed. Heather announced that the boys were now taking the bus to school, which sort of removed me from the equation. After the bank repossessed my home, I moved in with my dad, nearly an hour’s drive from my boys. Now I feel disconnected from my boys’ world, from their school life and social life. Heather shares no information with me, nada. But what about the amended divorce agreement – surely it would ensure my rights as a dad are protected. How naïve of me.
Here’s what I do know: I can’t rely on my ex to keep me abreast of what’s going on with my boys, I can’t depend on the schools to reach out to me, and I can’t rely on the courts to enforce my rights as a father. The obvious conclusion: if I want to become more involved in my boys’ lives—if I want to be an Autism Warrior—it’s going to be up to me.
Accordingly, I now submit to you my ‘Autism Warrior’ Action Plan to achieve the desired outcome:
1. Have ongoing phone and in-person meetings with Ben’s teacher. I want to know her evaluation of Ben, what strategies are working and what’s not, and what I can do to ensure continuity and consistency so we’re all on the same page.
2. I have received no correspondence from the Regional Center for over a year, nor has anyone invited me to the IEP meetings. I will make sure I am on their radar.
3. I will ask to meet with Heather to discuss how we can improve communication. I don’t hold out much hope here, but it’s worth another try.
4. When my financial situation improves, I will think seriously about renting a cheap apartment closer to the boys. But doing so will take me away from my 81-year-old father and best friend with whom I live.
5. What else? This is your chance to chime in. What could or should I be doing that I’m not doing?
Of course I could just let Heather handle things. She’s a great mom. I could focus instead on finding work and enjoying my boys when I do have them. But this hands-off approach would validate her world view: men will invariably disappoint you and cannot be counted on.
That’s not the type of man I want to be. I want to stand up and be counted.
And counted on.