Thursday, July 22, 2010

Might be time to admit defeat

Ok, so awhile ago I wrote a blog post about the eternal question: if there was a magical pill of awesomeness that cured autism, would I utilize it? My answer has always been a resounding no. And in most ways, it still is. I wouldn't want to change who my son is, or take away his little quirks like singing "chicken and a neetch" and squealing with happiness like a piglet at an all you can eat buffet. I would not want to change the way he an find joy in the silliest, most random things... For example a blue cup that he fell in love with. I wouldn't want to change the sweet way he chirps goodnight as he's going to bed with daddy.

But I'm coming to realize that there are some things I wish we could get rid of. And while I feel terribly guilty for admitting to this (and really, in any situation you have to take the bad with the good, nothing's going to be perfect) I can't really deny it.

I wish he would stop throwing poop around his room. I wish he'd stop hurting me and his sister. I wish he wouldn't hurt himself. I wish he didn't peel the paint off his walls and tear the carpet tacks out of the floor, ruining the carpet in his room. I wish he didn't shred his curtains and blinds. I wish i could leave toys and furniture in his room without him using them to do dangerous things like unscrewing his lightbulb from the ceiling fan. I wish he didn't run rampant at other people's home, ripping off his shoes and throwing them while bolting to whatever is most breakable. I wish that he hadn't ripped all the upholstery on the ceiling and inside door panel of the back seat of my car. I wish he didn't throw stuff out the windows. I wish he didn't humiliate us all in public frequently. I could go on and on, but I won't. It's horrible of me to say this stuff, but it is what it is.

We had a couple good days, then the old stuff started right back up. His being in summer school for half the day helps a little bit. They adore him, they tell me how smart he is, that he needs to be mainstreamed, that he uses the potty. I love how he is at school. He is so sweet, so mellow, and so compliant.

I'm far to lazy to do a thorough rundown of the latest meltdowns, so I'll just share the main ones.

I thought Jaymes had settled back down out of the UGH stuff. Apparently not. Yesterday, I got him off the bus and he was all hugs and smiles and yelling BYEEE to the bus driver... Take the kids straight to the playground, thinking he'll be better out of the house and maybe I'll tire him out a bit. Get to the park, lock the car and walk like 500 ft away, and realize I forgot to put in his hearing aid (one is sent off for repairs, so he only has the one). Tell kids, and Sierra skips back to the car with me. Jaymes refuses, and stands behind a tree, glaring at me. Ignore that, thinking I don't want to overreact and make him blow up, so I let him stay where he was (I could see him, and he wasn't running off). Got the hearing aid, get back to Jaymes, put in the hearing aid.

Got to the playground finally, and Sierra went on the swings while Jaymes played on the slides and big equipment. Everything goes good for about 15 minutes, then Jaymes comes over and I smell a diaper that needs changing. Tell him "new diaper, then you can play again" and try to get him to walk back to the car, where the diaper bag is. He blows up. Then, as we're walking (me pulling him along), he rips his diaper off and yanks it down one leg of his shorts. The contents of diaper go everywhere- on him, on me, his legs, etc. I grab the diaper, and drag him along a few feet, then he yanks his pants down and gives the entire playground a lovely view of his poo covered diaper area. Pull his pants back up and avoid the urge to leave him there to become the Feral Boy of Kernersville... Had to drag him, screaming, all the way to the car. Finally found a trash can and threw the diaper, and got him in the car. As I'm getting baby wipes to clean him and me off, he throws the wipes out of the car. Then he throws both shoes. Then he sits with his poop covered butt on the seat of the car.

Finally hold him down long enough to de-poop him as much as possible and grab shoes, buckle kids into their car seats. Originally the plan had been to stop at the gas station for "special drinks" and both kids had been really excited about that. Jaymes immediately started screaming about his drink, and I told him "no, you made bad choices. You hit mommy and took off your diaper," and handed him his water. He flips out, and slaps Sierra across the legs, then scratches her (no marks, thankfully). She's crying and hysterical, I'm in the middle lane of a busy road with nowhere to pull over. Bellowing at Jaymes to stop. He does. Sort of. Finally manage to pull over, and put everything that was in the front passenger seat into the back seat, and move Jaymes' booster to the front. Put him there, where he can't touch Sierra. Sierra is very sad wanting the drink she was promised (and that she deserved, for being such a good girl), so I went through the Sonic drivethru and got her an orange slushie and myself a blue one. Did not get Jaymes one, and explained why to him. I know he understood. Fended off hitting and scratching while at the drivethru. Drove the 5 minutes home with no major mishaps, other than him throwing on the emergency brake once and putting the car in neutral once. As soon as I knew he was going to do that, it was easy to keep him from doing it, I'm pissed at myself for not anticipating that- normally it never would have gotten to the point of him doing it because I catch that stuff fast.

Today, I had to get Jaymes from school to go to therapy. Summer schools ends at noon, and is in Winston (about 15-20 mins from home), same as therapy. Except therapy is at 1:45. So, needed to waste some time rather than drive all the way home. I'm petsitting for a friend, so we went over there and took care of the dogs, let everyone out and played with them a bit. Jaymes wanted to pull their extension cord off of the deck, so I took the end away and stood on it so he couldn't do anything.

Of course that started a fit, which I ignored until he ran into the house and started throwing toys off the top of the staircase. Nothing broken, thank god. Cleaned up the mess and got Jaymes' shoes back on and dragged him out of the house screaming. Went to therapy, that went well. Went back to let the dogs out again and double check water and food, another fit about the house. Get him in the car, and drive home, he was really good until right before our exit on I-40. He yanked the gear shift thingy and put us in reverse, while I was going 65. Car jerked, every warning light on the dash lit up, so I coasted to the side of the road and cried like a baby (I know, pathetic. But really, when is god going to ease up on the whole challenges thing?!). Then I got my brain back, put the car in park, shut it off, and turned it back on. Started fine, went forward fine... We made it home obviously, but I'm thinking something is wrong with it now. As I slow down it feels more and more jerky... Hard to explain. Just not right. Not bad, but not right.

Any car gurus got any ideas? I always wondered what would happen if you it reverse at high speed. Thankfully none of us got killed. I am at a loss. I can't put him in the back with Sierra, you never know when he'll get upset and suddenly go after her. Can't keep him up front, because he's going to kill us, or kill the car. Or maybe both. I guess the next step is to put the baby/toddler convertible seat in there and strap him in as tight as I possibly can. But he knows how to undo buckles, so I'm not so sure I see that working either.

We have a psych appointment on Tuesday to discuss what Jaymes' options are. We lost our case manager at the worst possible time- we NEED one right now. I just got a call from some random person in some other state who got a fax with all Jaymes info (SSN, Medicaid number, medical history...etc. Lots of info.) in error from Custom Case Management. My number was on it, so the person called me. She is being wonderfully kind and mailing me the info. I think that it's the annual renewal thing we did not long ago for case management services and respite. Oh, had I mentioned we lost respite care? Yeah, what a great couple months. Our wonderful case manager leaves, the respite authorization expires and there's no one to renew it, Jaymes' OT discharges him (we had an assessment at another facility and looks like he'll start OT there in a couple weeks, thank god)...

Oh, now that I realized what a tangent I just went off on... Back to the appointment on Tuesday. I've already talked some to Dr. Klinepeter about options. He said that we'd look at meds, possibly a medication "holiday", an ambulatory EEG, and get the ball rolling on an inpatient program. The way he explained the inpatient thing is that it's a very long process, so better to start it now and have it available quicker if we do end up needing it. He said if Jaymes comes up on the list, we can just say no thanks if we don't need it anymore. I hope that will be the case.

I do not want to put Jaymes in any kind of facility. When I was a kid, I had that done to me, and it was the most terrifying, awful thing I'd ever experienced. It didn't do anything for me either, none of my issues stopped or improved at all- I got better at hiding it. Anyway, I never ever want him to feel so afraid and alone as I did. The thought of doing that to him makes me sick inside- to me it feels like the ultimate betrayal and the ultimate failure. I know that in some cases it is necessary... But I really, really, really don't want to do this. I just can't do that to my little buddy.

But he is destroying everything- the car, the house...etc. He is making Sierra miserable. She's afraid of him, and she hates having him come places with us- she says "Jaymes ruined it." He's making things miserable for us all. I'm used to it, it's ok for me... But Sierra deserves better. I just don't know what to do. So yeah, at the moment I'm very stressed out and unsure of what we should do. All our friends (both online and local) agree that it's not fair to Sierra, and they are shocked that he is still at home with the stuff they've heard/seen. I don't know who to "side" with. I wish Jaymes came with a user's manual.


kristi said...

Oh hon. I know exactly how you feel. I took my daughter and son to the outlet mall a few years ago and he acted so bad that we had to leave. Luckily my daughter had picked out some shoes before he went on a wild rampage. I remember crying all the way home and apologizing to my daughter. She was okay and said, "Oh Mom, don't cry, at least I got some shoes."
It is hardly fair to the siblings or to us as parents.
I hope you can get some help...we are doing better, my son is 8 now and most days does okay other than his inappropriate cursing. Is there any way you could put your daughter up front and James in the back?

Amber DBTD said...

I can't put Sierra up front, she's only 27 pounds or so... Jaymes shouldn't be there either, he's only 35 pounds...

I don't know what to do, although at this point it appears he blew out my transmission, so it may not be an issue anymore...


leah said...

Goodness gracious- that is seriously rough! Honestly, I have no idea what to do. The only thing that I can think of (which requires money) is a vehicle with third row seating. Then Sierra could sit in the very back and Jaymes could sit in the middle row.

I hope you can get in for your psych appointment quickly to see if tweaking meds would help. You've been through a lot lately!

Lisa said...

Police car partion, modified to separate both kids and front seat. Used police cars are cheaper than you might expect. Or you could hire a carpenter to build a partition in your existing car. Or you could make sure another person drives you and the kids around, you can sit between them in the back seat :) That's dangerous having him up there, sorry for all the problems your going through. The local autism support group is coming up in August, have you ever gone? Lots of people there may have some good ideas, maybe worth a try

Brandonsrecovery said...

You could try an elimination diet for the poop smearing and aggression and chelate him. Those things helped my son to potty train, have a better attention span, do less stimming and spend more time on appropriate things, and stop destroying the house and abusing people!