I waited a day to write about something that happened yesterday, until I'd had a chance to calm down. I have now, and it's not as fresh and hurtful, but still very much so.
Janey had an appointment to see the psychiatrist that prescribed the medication for her a few months ago, to check on her. We went in by train, which is a whole story in itself for another time. The appointment was in the Internal Medicine department, as the psychiatrist is not at that office all the time. So we went in there to wait after checking in at the main desk. Janey was crying. She is scared of doctor's offices or anything that looks like one. I was holding her and trying to comfort her. She was a little loud, but in my eyes, no terribly so. It had probably been only 3 to 4 minutes when one of the three receptionist there came over to me and said (I'm trying to recall the exact words) "You'll have to wait in a different place. We have patients here and they can't have that kind of noise---she's too loud. She can't be here" It was one of the very, very rare instances I was so upset that I didn't use my internal censor that usually keeps me from saying close to what I think. I said "SHE is a patient here. She is here to see a psychiatrist BECAUSE of her anxiety and crying. There is no other place for me to wait. She is severely autistic, and I can't totally control her crying". Or mine either---by that point I was crying hard. The woman and the other two receptions jumped all over themselves to say they were sorry. I am assuming they thought that I was the patient, and I had just brought along my bratty kids for fun. I really hope they didn't know JANEY was there to see a psychiatrist. And even if they did, I can't possibly imagine how her crying would disturb patients, who were behind heavy doors and in their own rooms. And even if they did want her gone, they could have handled it a million better ways, like saying "Poor thing, she's having a hard time. Can I find you a place to wait where she would be happier?" What they did do is take us to a couple chairs far, far into the bowels of Internal Medicine, like a tiny waiting room for the psychiatrist. I sat there and cried and cried. I couldn't stop. I am sure I looked crazy, but I've always felt like a doctor's office was one place where I would be exempt from the stares, the angry looks, the judgements that keep parents of autistic kids from leaving the house much. I guess I was wrong.
I am trying to figure out if I should write a letter or make a call about this. Everyone says I should, but honestly, I don't think it would make much of a difference. It's how life is. What made me cry, I think, is realizing this is my life from now on, and worse, Janey's life. She is going to live her whole life in a world that has little understanding of people with mental illness or retardation. Maybe some parents would see that as an incentive to take on that world, but that's not me, at least not directly. I will protect her, keep her as happy as I can, but I'm not going to fix the world.