One Saturday morning about ten years ago, I woke up early with a twitch in my eye and a strange, metallic taste in my mouth. I couldn’t go back to sleep, so I went out to the living room to read. By the time my husband got up a few hours later, I couldn’t close my left eye without using my finger and my bottom lip felt like it was in my lap. He drove me to an urgent care clinic that was open and they took us back to a room to wait for a doctor. Before the doctor who arrived could even open his mouth, I told him I had Bell’s Palsy, which meant temporary paralysis of half my face.

At the time, I worked in a research setting with MD/PhDs all around me, but I hadn’t learned about Bell’s Palsy from any of them. I learned about it from a fellow admin who’d had it herself about six months before. That Saturday morning, as I sat reading and trying to blink through sheer force of will, I remembered discussing symptoms of it with my colleague and was able to determine what was happening to me. I’m so grateful she had shared her experience with me because I would have been beyond frantic without that knowledge. I got part of the medicine I needed from the doctor on Saturday, but I would never have known that I also needed anti-viral meds had she not come to my office first thing Monday morning and dragged me off to be examined by her boss, a world-class virologist.

iStock_000006185167SmallBecause of her, I knew what was wrong and I got the right treatment almost from the start. I wish I could make that same statement about my experience with autism, but I didn’t know anyone affected by it when our pediatrician told me my son likely had Pervasive Developmental Delay. I didn’t even know PDD was autism until I looked it up. We didn’t take him for evaluation for autism until almost two years later. We were told the treatment would be the same with or without a diagnosis, so we put him in the therapies suggested for him and left the diagnosis for another day…or 730.

We didn’t know there was more help he could have had, more help we could have had. We could have had a coordinator to make specific programs for him and therapy assistants to come to our house and work with him.

He started preschool that fall. I signed him up the spring before to secure his spot, but at the end of August had to do a frantic last minute search for a different school, one that didn’t require students to be potty trained. Friends told me to just send him and he’d get it after a few accidents. They didn’t understand. How could they when I didn’t even understand. I thought he’d be potty trained by that fall because, after all, potty training boot camps seemed to be working for everyone else. It’s now almost five years later and he’s still not potty trained. I wouldn’t have had to scramble to find a school had I known there was developmental preschool offered through our school district. They provide special education teachers, occupational therapists, speech therapists, physical therapists, peer interaction, and bus service that comes right to your door.

But no one told me and I didn’t know to ask, so I took him to the preschool a friend was using for the following two years. It wasn’t until the end of those two years that my friend and I realized it had been a pretty bad experience for both our boys. The teachers failed to tell us and the boys certainly didn’t mention it. Toward the end of his two years there, I took in a questionnaire for them to complete for the Autism Center that was going to evaluate him. I handed it to the teacher in a conference, with no one else around, just the two of us to talk about it. She had no clue what autism was or how it would tie in to how she taught our son. She gave the impression he was doing fine, such a sweet child. And he is, extremely sweet, but he wasn’t doing fine.

I didn’t know that until a few weeks later at pick-up. I came in with my toddler, also autistic and sensitive to noise, on my hip. I was trying to hang on to him while I collected two backpacks, two coats, two lunch boxes, various pieces of artwork, and two boys (carpool) amongst a swarm of parents all trying to do the same. She came up to me, seemingly incognizant of the chaos around her, and asked if I had any ideas on how to manage our son’s behavior during the Pledge of Allegiance. I asked what behavior she was talking about and was told that, every day, when they say the pledge, our son forgets to start with the class and then screams and cries inconsolably for the whole class to start over. One of the teachers has to take him to another room until he calms down. How long had this been going on? Most of the year, but this was the first I’d heard about it from anyone. My introduction to the issue happened in this chaotic, noisy environment where my own autistic brain was incapable of processing what it meant. Or of offering any solution. Or of producing speech, really. I mumbled something and left with the kids. I don’t remember getting angry then, mostly I felt guilty. Guilty for leaving my son in that situation. Guilty for leaving the teachers to deal with it. Guilty for not knowing about it. Guilty for not knowing what to do about it once I did know. It was April, so there was no place to take him for the last month and a half of school. And I had no suggestions for how to deal with him in school. I was well-acquainted with the behavior; he often did the same thing when he missed the opening bars of the theme song to PBS’s Curious George, insisting I rewind again and again. But I had no idea he did it at school. Looking back, I think, “Why hello Rigidity, hello Meltdown.” Those words were not part of my vocabulary then. Not yet. I didn’t know where to look for them.

We went through a variety of therapists in each discipline recommended. Each one found through asking another therapist or looking through pages of therapists acceptable on our insurance plan and picking the closest geographically, which was never very close. If I had known someone with an autistic child, I would have asked. But I didn’t. I met a few through my son’s social skills class, but they were at the beginning of their journey, too, and didn’t know any more than I did. What I needed was a friend who had been there already. But there was no way to find one, especially for an introvert like me. For an Aspie like me, though I didn’t know the Aspie part then. So I felt my way through in the dark until a wonderful special ed teacher took pity on me and extended the hand of experience. Through her, I made friends who had been where I was. Friends I can talk to and they get it. Friends who know the lingo, who to go to see for speech therapy, and a place to get the boys’ hair cut where they won’t mind the screaming. Well, they won’t mind it as much.

iStock_000010445616LargeYes, you can find some of this information on the internet, but only if you already know where to look, how to search for it, how to wade through the crap to find what you actually need. What you need is a friend who has been there. If you’re now where I was then, maybe you can find that here.