I have been exhausted; too tired to think or type down any thoughts that may have sifted through the sleepiness.
On Tuesday Jonah’s school had a half day, so I had to pick him up at 11:30am. I dreaded it. When I arrived he’d already had attack incidents at school but I’d just bought that kick-ass harness contraption so I knew he’d be safe in the car. It is a sickening, saddening, surreal feeling to be afraid to let your child out of his safety harness for fear he will attack you. But I was too chicken to have Jonah in the house with me alone. So I literally drove him around until M met me at 3pm to take him to a doctor appointment I’d made for him (almost all the respite/services/ placements/ programs I’m applying for require a current physical).
After I picked him up from school, at Jonah’s request, we headed to Voorheesville to see the trains. Here we had the first real test of Jonah’s new safety harness, when for no reason he flipped out and tried to launch himself at me.
It is a weird thing to reach for your camera at a time like this, but I feel so journalistic now that it’s a natural instinct. You can see that although the harness kept his torso back, his legs were free to kick. Of course I’d thought to remove his shoes, but bare bony ankles hurt too. After I took the picture I got the hell out of the car and watched, shaking, as he BAM BAM BAM-ed his foot against the console armrest. I quit smoking almost 10 years ago but it was a smoke-a-cigarette-and-get-your-shit-together moment if there ever was one.
I’ll be looking into a leg/foot restraint next. After he kicked himself out of energy, by some miracle of miracles, we saw four trains – two at the same time – and Jonah was once again happy.
Then we visited a drive-thru and went up for a ride through Thatcher Park. Jonah was calm but I knew it could change at any time, for any reason, and the whole time I’m thinking this is ridiculous. I can’t live like this, afraid to let my child out of the car until I have help.
Finally M and I took Jonah to the doctor and he was pretty good, though I was kind of a wreck. After the physical and the shot Jonah needed (which didn’t elicit a freak-out attack, like you’d think it would), M took Jonah to the car and I stayed behind to talk to the doc. Doc came in, pulled a stool up to me, and said “I’m going to say something that’s going to sound horrible, and I’m sorry. But I think it’s time to investigate respite placement for Jonah.” He explained that I am not going to be able to handle this, emotionally or physically, and that it wasn’t safe for Jonah or for me, or for my mental health. So I nodded numbly and got some information from him about who I’d need to talk to, and then I left. Within hours I had a second opinion from my favorite doctor on the planet, and he told me the same thing.
So I considered it. I thought about it and I cried over it and I had nightmares of it. On Wednesday, when M could not be with me, my cousin Brian came down to stay with me and Jonah (and he got to witness a mid-level attack on me, too fast for him to stop, which mangled my glasses yet again and gave me that bonus good ol’ “nose smashed into the brain” sensation) until M could come back to help. I just have to keep someone with me, all the time. All the time.
I keep someone with me
and I remind myself to breathe
and I have crying jags that won’t stop
and I have moments of power and strength
and I keep hoping, and feeling the hope crushed, and hoping again.
and it’s breaking me down, all of this, and chip by crack by piece I have come to the place I am today, where I am investigating temporary overnight respite homes for Jonah….to keep him safe, to keep me safe, to keep me from losing my mind altogether and being of no use to either of us.
I do not have help this weekend. I had to drive Jonah to school this morning (because I’d forgotten his harness at after-school program the day before and they won’t let him ride the bus without it) and then I realized halfway there I’d also forgotten his book bag with his lunch in it – and then on the way he launched another few attacks at me — kicking, screaming, thrashing — and by the time I got to the school, my nerves were so frazzled that I actually called the school on my cell from the front driveway and cried to them to please send someone out for my son and a social worker out for me.
They came and collected Jonah, and in the social worker’s office I asked her tearfully to please help me find some kind of respite care before the weekend. Please. As unimaginable as it is going to be to walk away from a home where my son will be for however long he needs to be there, I need this. Now. Please. So she started leaving messages, and so did I. My father helped me a lot today; we picked Jonah up from school and took him back to the doc for the results of his tine test and my dad stayed with me until M could come back. I heard back from the social worker and someone from CPS but only to say they were trying.
I am still waiting. I have one more day until the weekend; I have to believe they will help me tomorrow.
I’ll call and badger and beg if I have to…
Or I don’t know if I am going to make it.
The Never Normal 