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Archive for January, 2011

St. Colman’s

Andy and I toured St. Colman’s on Friday.  I tried to keep it together but ended up crying several times as the very kind staff took us through the building, showing us the classrooms, living spaces, a huge domed gym, some of the special sensory rooms, and a nice cafeteria with a beautiful Christmas display that Sister Sr. Mary Louise constructs every year for the children. 

The pace looks like a huge old high school with wide, echoing hallways and a maze-like enormous feel to it.  The children all seemed happy and well taken care of, but I knew Andy and I were thinking the same thing: can they handle Jonah?  He’s so aggressive these days that I’m afraid he would hurt someone there – one of the other children, or a staff member. 

The people giving us the tour assured us that they accept children who are violent and those kids do very well with their structured schedule, individualized for each child.  But they send the children home every school vacation (except for a 6-week summer program; they have two pools, which is really nice) so we don’t know what we would do during those times.

Sister is going to visit Jonah at school this week to observe him and make a determination about whether or not he would be a good fit for the program.  Then, if we decided to go ahead with the application process, we would have to have another school district meeting to make the final arrangements.

I think there must be some other way we could fill in the vacation times, like the Western Avenue Respite Program we appplied to, but I didn’t go on that tour – it was during school vacation so Andy brought Jonah – and once again, I don’t think Andy believes they could handle him.

I don’t know what’s going to happen or what we’re going to do.  The residential schools that have 365 days-a-year care are out of the area.  We may have to tour them as well to compare them to St. Colman’s and see what’s the best placement for Jonah.

Yesterday Jonah had a very good day at school, his log book told us.  He laughed and sang and played and had no aggressions at all.  They are trying a new program with him where he gets 3 minutes of an activity and then earns a gold star and a “special choices” reward – he usually chooses a scooter ride. 

I want to believe that he can have more and more of these days, that the next time we take him to the psychiatrist we can adjust his meds perfectly, that combined with Wildwood’s new behavior plan he can just stay home with Andy, where I can see him as much as I want.  I want to believe that we can fix things, that we can keep all this from happening.  I want to still have hope, even as we investigate the residential placements. 

I want to still have hope.

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I’m told that someone once asked the Buddhist Monk Thich Nhat Hanh to explain Buddhism in one phrase, and he paused and answered:  “everything changes.”

Several things are changing now, actually.  Got very good news about my position changing at work (in a way that I am very appreciative of and happy about) and also have an appointment this morning to visit St. Colman’s residential educational placement school, which is only about 10 minutes from my home, as opposed to the 4 or 5 other residential schools we’re applying to, which are all at least an hour away.  It would be so much nicer to be able to see Jonah pretty much whenever I wanted, and I hope the tour goes well and they have a place for him.

When I was in the hospital, the nurse who handed out meds had seen my file and knew my story.  She told me that she doesn’t usually share personal information with patients, but that she had placed her son (who also had autism) at St. Colman’s when he was 7.  Now he is 21 and about to age-out into an adult home; she had nothing but wonderful things to say about the place, how far he had come, how wonderful the staff was, how much she appreciated everything they had done for her son.  I swear everything happens for a reason.  It is no mistake that I met this woman.

On Wednesday Jonah had 9 aggressions at school, and Andy picked him up early to take him to the doctor for something the nurse said was patiki eye…tiny dots on his left (bad) eye…the redness was traveling down his face and the nurse was concerned.  But they never made it to the doc; Jonah attacked in the car halfway up the Northway and Andy called me from his cell phone and told me to cancel the appointment; I could hear a struggle in the background and sighed.   When I went to the house after work, Andy wasn’t up to reliving the details – Jonah had fallen asleep by then and his face did look a little red but he didn’t seem to be in any pain, so Andy said he’d try to take him again tomorrow if he needed to.

Yesterday there was no call from the school nurse, but Andy’s car broke down on Colvin Avenue, which is about 3 miles from our house.   He called AAA (thanks, dad, who always gives us each a membership for Christmas) and then had the car towed to a nearby repair shop.  He called me to tell me what had happened.  I asked if he wanted me to come pick him up but he said he was going to go for a walk anyway that day, so he walked home.  Just one more thing to deal with.  The big property tax bill came too, and now a car repair.  Good thing neither Andy or I really mind not having much money.

Then Jonah’s log book said he’d had 10 aggressions that day- 9 at staff and one toward a peer.  This frequency is as bad as it was before we started him on medication, and I’ve become almost numb to this kind of news.  It only serves to make me feel sorry for Andy, for the people at Wildwood, and to underscore the necessity of placement.  It gives me an all over, bone-deep, constant anxiety that feels like a new kind of normalcy now.  I’m on anti-anxiety meds but I find myself wanting to mainline them straight into my veins – to sleep, perchance to wake with life as it was 8 years ago or so – a small but comfortable house, a sweet beautiful baby in my arms, a happy husband to come home to me each night after work.

But everything changes.  The wheel turns, and those squashed at the bottom will rise again.  I just wish the wheel would turn a little faster…

“The wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.

Small wheel turn by the fire and rod,
Big wheel turn by the grace of God,
Every time that wheel turn ’round,
Bound to cover just a little more ground.”

~ The Grateful Dead

For my peeps at the hospital, wherever you are — for everyone reading this, leaving comments, praying for us, thinking of us, calling me, sharing your own stories, expressing your compassion, wanting to help — I thank you.  It means more to me than you will ever know.

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When I was in the hospital, there was a man whose 15-year old son came to visit him.  The boy had down syndrome and I was introduced to him and the man’s wife and other family members as they all sat in the TV room.  The boy said hello to me when prompted, then sat quietly between his dad and mom, content to just visit calmly, his dad’s arm around him, his eyes taking in the different things in the room.  I made a small bit of conversation and then left them to be by themselves.

The next day Andy brought Jonah up to visit me.  I hadn’t seen my boy in a week and I missed him terribly.  Part of me knew the visit would likely be stressful for Jonah, but another part of me longed for the same kind of visit I’d seen with the boy the day before.  When they arrived, I smiled brightly and said “hi, boo!”  but Jonah just looked confused, turning back to his dad.  “Home?”  he asked.  I lured Jonah into another recreation/group room (where most of the unit was gathered) by offering him a soda I had in there.  He went right for the soda, took a sip, put it back down, and walked back out of the room before anyone could really even talk to him or say hello.  I know the experience was overwhelming for him and I knew intellectually not to take it personally, but then Jonah cried for “car ride” and “home” increasingly, until even though he’d only been there for 5 minutes or so, Andy said it was time to go.  I wanted to hug and kiss Jonah goodbye but he started to attack Andy.  Andy quickly handed me his visitor’s pass and pushed the door open.  I watched from the window in the door as Andy struggled with Jonah.  They swung around in the cold on the path to the parking lot and I broke down, sobbing at the door, watching them until they disappeared from sight.

The next day I was talking to the father of the boy with down syndrome, and I guiltily admitted to him that I was jealous – that I wish Jonah was like his boy.  “Why?” he asked me.  “Two reasons,” I answered.  “Down syndrome is an immediately identifiable disability, (whereas Jonah looks ‘normal’) so people are more likely to be compassionate when encountering him, and also because he is so sweet and good-natured, attending a regular school and doing well, learning as best he can, operating in a world that’s got down syndrome pretty much figured out, that knows what it is and what to do about it.”  The man nodded and smiled.  “He’s my buddy,” he said.

I miss that man, and everyone else in my unit at the hospital, terribly.  We were a group of people for whom it was unnecessary to explain anything but the details.  The underlying suffering was universal – we all felt it and we all shared it and it was the foundation of everything for us.  It was easy to connect, to feel close to one another.  One of the rules on the unit was that we were not allowed to touch one another, but we snuck hugs and cuddled into one another whenever we could get away with it, like a very functional family in a very dysfunctional world.

I thought the hospital would “fix” me – that on new meds and armed with new coping skills, I would do lots better – but I find myself wishing I could crawl back to the hospital with all those same people where we all understood one another.  The outside world doesn’t have the same dynamic – people don’t understand the tracks of my tears or why I can barely breathe – and I have no right to expect them to.

Jonah was so good for a few days over vacation that I was once again tricked into thinking maybe we don’t have to place him – that maybe we can manage him okay.  By we I mean Andy, mostly, for I am not at home anymore and though I try my best to see him and assist as best I can, I usually end up cleaning up the messes left behind from his attacks.  I visited for about 4 hours both Saturday and Sunday.  Saturday was good; I played with Jonah while Andy took a nap and got some much-needed rest.  But when I left Jonah attacked our sweet little aging cat, Sugarpuss, who didn’t even fight back, and Andy had to stop Jonah from choking her with her collar.

Sunday was worse.  Jonah picked up Sugarpuss by her skin and brought her into Andy’s room in the morning, and we quickly realized we needed to find another home for our poor cat.  Then I came over again to help out for a while.  Andy was making coffee while I was in the computer room paying bills online, when I heard Jonah say “hey daddy?” and then there was a ruckus, followed by Andy leading Jonah into this room and onto the bed, struggling to calm Jonah during yet another attack.  I went into the kitchen, where Jonah had yanked the half-filled coffeepot into the sink, yanking the cord out, spilling coffee and grounds all over the kitchen cabinets and scattering a huge mess across the floor.  Andy kept Jonah in his room for nearly an hour and it took almost that entire time for me to clean the disaster of the kitchen.  Andy was bitten and scratched and I was shaking, my heart pounding, my panic rising.  How much longer can we do this?

We tried to prepare Jonah for the return to school the next day.  He had a horrible day at school, seemed disoriented and confused, and while he was in the “safe room” he pooped and smeared it all over himself and the walls, something he’s never done before.  (Actually, he has been doing very well with pooping on the potty at home).  The note home from school tried to euphemize the day somewhat, but Andy and I both know the deal.  Yesterday he attacked the bus aide and Andy several times, and Andy’s nerves are shot. Andy brought Sugarpuss to my mom’s house, where we hope she will be safe and do okay with my mom’s other, male, much-younger cat.

My nerves are shot too.  The nurse at school called yesterday because Jonah’s left eye (the bad one) was all red and puffy.  Andy gave him Benadryl and is waiting to hear back from one of the doctor’s he’d called, the developmental pediatrician or the eye specialist.  I guess Jonah’s eye is a little better this morning but neither of us have illusions of hope anymore when it comes to anything at all.

It’s like a giant wrecking ball has come down upon us to usher in 2011.  I don’t want to get out of bed and I don’t want to go to work and I don’t want to tour the residential schools and I don’t want to talk to anyone and once again I am barely functioning.  I have no idea how Andy is doing what he is doing and I thank God he has the strength.

I survive on medication and deep breathing and very little food (I’m not hungry at all).   I cling to other people’s prayers because I can’t pray anymore.  I sleep as much as I can and when I get home from work I do suduko puzzles, and I make necklaces with beads, and I curl into myself and rock like a child, self-soothing, trying to empty my mind, trying to stop my ridiculously useless tears, wishing I were anywhere but now.

Wishing the wrecking ball would just crush me already and put an end to all this fucking pain.

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Happy 1-1-11 everyone!  (I love when dates line up in cool ways like that).

So yesterday Andy was giving Jonah his morning ride to the train and then Johan wanted more car ride, so they’re going down New Scotland Ave and right in front of him this big pickup truck veers off the road and smashes into a giant oak tree.  Just keep going, Andy thought, worried that if he stopped the car Jonah would freak out.  Just call 911…someone else will stop. But like the nice guy he is, he just couldn’t do it.  So he pulls a little past the truck and runs back to see what’s going on.  Turns out the guy driving must have had a heart attack or a seizure or something; he’s about 50 or so, Andy thinks, and all slumped over with his eyes rolled back in his head, only the whites showing.  Andy calls 911 and tells them where the accident is, and a teenager runs across the street to see what’s going on; Andy hears the driver breathing but his breaths are all raggedy and raspy.  “If he stops breathing we have to get him out of the truck,” Andy tells the kid, “and I’ll give him CPR.”

By this point another car has stopped and Andy asks one of the two people if they can go check on Jonah in the car.  But there’s some confusion as to which car is Andy’s, and now the driver’s all slumped over into Andy, moaning and trying to move.  “Just stay still,” Andy tells him, and the firetruck arrives.  Andy gives a quick description to the emergency personnel of what happened and how the driver is doing, and then he runs quickly back to the car.

Jonah’s gotten himself out of his car restraint completely and is wreaking havoc in the car – banging Andy’s coffee cup on the console, screaming and kicking.  He tore the knob off the radio and is going ape-shit.  So Andy opens the door and Jonah and he are struggling in the car and then out on the street, just 50 yards or so ahead of the car accident scene.   By this time Jonah’s got Andy’s hands all scratched and bleeding and he’s bitten one of Andy’s hands twice, pretty bad.  Now Andy’s worried that someone’s going to notice his scene and wonder what the hell he’s doing to his kid, so he wrestles Jonah back into the car restraint and hightails it outta there.

He decides next time he’ll just call 911, at least if Jonah’s in the car.  I think this makes the 5th or 6th time one of us has dialed 911 since the August day when Jonah put his leg through his bedroom window.  Too much 911 for us, man.  Let’s have a 911-free 2011.  Please.

All in all, though, Jonah’s been doing really well.  So well that we’re reconsidering placement and hoping he’ll get nicely back into the school routine come Monday.  Jonah probably just got all freaked out being left alone in the car for the 7 or 8 minutes Andy was gone, so Andy didn’t take any punitive action.  He called me and we ended up taking Jonah to Colonie Center, where he could go through his highly customized routine of visiting stores he likes and their escalators.  I tried to stop by LensCrafters to say hello to my peep Sue, but she was busy with a customer.  She saw me, though, and we waved to each other, and then Jonah pulled the three of us back into his preferred mall route.  He does not enjoy varying from this route and we sure as hell weren’t going to press the point.  Not this day.

Can the strange, unusual, stressful, crazy events please stop haunting us this year?

We’d really appreciate it!!!

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