Back when I called my blog Normal is a Dryer Setting, its tagline was “autism sans sugar coating.” I hold so much back about Boo. Am I sugar coating by omission? If I don’t say the things, will it make them not be happening? If I don’t type the words, will it make them not be true?
I couldn’t visit him today because I’m sick and don’t want to bring it to him or to anyone else, but there was relief in the not-visiting. Last week he was a pain in the ass. He wants to hug me but he’s really trying to press himself against me in a sexual way, and I know this and I want to hug him but I just want a regular hug but I can’t have a regular hug because my son doesn’t understand his normal 23-year-old urges and what they mean or how to handle them. He says “the boobie” and shrieks with laughter and tries to put his hand on my chest, over and over, his laughing intensifying. Sometimes I pretend I don’t know what he’s doing and sometimes I say “no,” and move his hand away, and sometimes I say whole sentences like “that’s inappropriate, Jonah.” He wants to play the unspeakably filthy song “You Can Do It” by Ice Cube at top volume and he has no idea what they’re saying, he just likes the beat I guess but fuck does it have to be his new favorite song right now?
There’s no rulebook for any of this.
At the disability conference I attended last week, one session focused on the prevention of sexual violence against individuals with I/DD (intellectual and developmental disabilities) – and this session, like all the sessions at all the disability conferences, focused solely on higher-functioning people with I/DD. The presenter spoke about problems like overprotection and infantilization and afterwards I spoke to her and politely asked why she didn’t speak about the vast and very vulnerable population of people with severe I/DD – those for whom UNDERprotection and ADULTification are the much greater issues. She was kind and she listened and I don’t know if she was giving me lip-service when she said they were always looking for feedback and they appreciate my perspective but my question is how the fuck can you do a whole class about sexual violence against individuals with I/DD and leave out the very people who are the most likely to be abused because they can’t tell you what’s happening?
Are you kidding me?
I wrote this poem last year for the April “Dewdrop Inn” at writing.com where I have a portfolio, it is a month of poems, one a day, prompted, and all of mine go dark or seem to anyway but I am reminded of this one I called My Son is Safe (the prompt was Safety) when all this fear went through my head unbidden.
| My Son is Safe Because the traffic light turned green before I made it to the intersection and because I chanted sixty times a mantra my late friend Gina taught me years ago and at the end of it I lit a stick of sage and because the magic 8 ball offered up an answer: it is certain and because St. Jude of hopeless causes heard my prayer and promised a protection (not so hopeless, right? – if he can help) and because my mood ring turned the blue of confidence, of triumph, of a gain and because I found a penny in the rain the day we dropped him off and drove away. |
A few months ago the school called and told me Boo had a major incident. “Jonah’s okay,” they always start off with, because they know when a parent sees the area code they panic because it’s an unexpected phone call from the place where their kid lives, and because so many times it’s bad news, and it’s bad news today even though “he’s okay,” and the news this day is that Jonah was taking too long in the bathroom at school and when they went to check on him he was playing with his shit. He was sitting on the floor with his hand in the toilet and there was shit all over the place – the stall, the toilet, his face, the mirror, his clothes – he was playing with his shit and he was laughing and they had to somehow clean the area and bring him into the gym where there is a shower, these people who make God-knows-what an hour, not enough, not even close to the realm of enough, and they don’t know why he did it but to the best of my knowledge he hasn’t shit-smeared since his days at Wildwood before we had to bring him to live at Anderson, and I don’t know what it means and I don’t know what to do about it.
A few weeks later the house called and told me Boo had a major incident. “Jonah’s okay,” they started off with, but he got up in the middle of the night and he destroyed the bathroom. He ripped the soap dispensers off the sink and tore the towel bar off and used it to bash at the windows and the mirror and to try to bust into the office where the staff had locked themselves in while they called for help. Help came and they cleaned up his cuts and calmed him down and got him to go back to bed and I guess fixed up the bathroom but then the next night the house called and told me Boo had another major incident.
“Jonah’s okay,” they started off, but he attacked two staff, two caregivers, and they almost got away, they ran around a table but he was faster and he got them anyway and somebody called for help and they weren’t very specific about how badly they were hurt but I guess they were okay, no one had to go to the hospital or anything, so it was okay and I didn’t ask for more details because I didn’t want to know more details and the next time I talk to these people I tell them how sorry I am and I apologize for Jonah and they say they understand he can’t help it and they somehow keep working there but I know a bunch of them are terrified of my son.
And all I can think is at Anderson they can call for help on the walkie-talkie and people will come running from one of the other houses, bigger people and stronger people and more people, but at the new house they will be calling 911, the police will come and handle it, and I’m sure they won’t get there even close to as fast, and God knows what they’re going to do when they get there, and I think how this isn’t a matter of if but of when it will happen, because if he’s having all these fucked up behaviors now, can I imagine what will happen when he’s taken away from everything and everyone he’s known for 14 years and plunked down into a house on a street in a neighborhood?
Do I have the energy to imagine it? Do I want to talk about it here? Do I want to go to another fucking disability conference and hear them talk about self-direction and self-advocacy and completely ignore the fact that people like Jonah who have problems like this even exist?
And then I had to have surgery and then I had to put my cat to sleep and then I had to have another surgery and the second one didn’t work and then all the people started dying and now I’m sick and feeling relief I didn’t see my son today…and I’m sorry everyone but it’s a lot and it’s too much sometimes and there are days I do not think I can keep going. And now the country is a torn up mess of anger and murder and hate, a shooting then another shooting and another, tragedy on tragedy, and all we do is blame the other side, it’s all their fault, they’re evil, must be stopped, and yes I am in therapy but it’s a new therapist and we haven’t even scratched the surface yet, I lost 3 therapists in a year if you can believe it, they kept quitting, I guess for better therapy gigs and so I keep having to go back to the beginning, choosing ways to introduce my certain kind of crazy. I carved out a vacation in Panama City Beach Florida, it’s the place me and my sister Barbara always go every year, but this year I had her ashes with me instead of her, and didn’t feel I could relax for even a minute, and strangely I held on to the ashes until almost the last day, I couldn’t bring myself to do it, and when I let them go into the ocean some dolphins came which was cool but the whole thing sucked anyway and then it was over and here I was again at home or more accurately living here in my mother’s home.
I’m using K (klonopin) to slam myself down to sleep which is funny because it’s anti-anxiety but I can’t use it that way because I need it now to slam myself down to sleep. Bedtime is the best time of the day, hands down; I play a Little House on the Prairie audio book and sometimes even wait until it’s dark before I take the K and if I wake in the night I hope with all my heart that it’s only 1am or 3am, the earlier the better because it means more sleep, escape, more bed, less life, less panic and loss and pain, and I don’t want to tell people because my God I’m all the time complaining, worried, scared, dreading panicked tired blah blah blah I can’t stand myself anymore so how the hell would I expect anyone else to stand me?
I’m pretty good at masking, though, mostly, and I have good times and I have very good friends and I have fun and we smile and laugh. And I’ll be okay in the morning. Or okay enough. I’ll be a weeble, and they don’t fall down.
I am wobbling but I won’t fall down.
The Never Normal 