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Archive for the ‘behavior’ Category

St. Colman’s

Posted in behavior, placement, Uncategorized, tagged on January 11, 2011| 2 Comments »

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 place 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 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 applied 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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everything changes

Posted in autism, behavior, placement, tagged , , , , on January 7, 2011| 6 Comments »

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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the wrecking ball

Posted in autism, behavior, potty training, Uncategorized, tagged , on January 5, 2011| 5 Comments »

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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hero, interrupted

Posted in autism, behavior, escalators, trains, tagged , , , , on January 1, 2011| 1 Comment »

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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placement

Posted in autism, behavior, Uncategorized, Wildwood, tagged , , on December 9, 2010| 8 Comments »

Placement.

The word itself sounds crisp and almost pretty, a deliberate and careful motion to put something in a certain spot.  I love words but I don’t like this one, despite its euphemistic connotation in the context of educating Jonah in a residential setting somewhere.  Somewhere else.  Somewhere Andy and I won’t be.  And today is the dreaded meeting to decide about it.

He was doing so much better on the new dosage of meds, and then yesterday at school he fell apart again.  Five attacks, lots of time on the scooter platform with his weighted blanket.  It’s the worst timing there could be, for the teachers in his class will weigh in heavily on what to do here, and if he is getting such a low quality of education now that they’re simply managing his behaviors, I can understand a move toward residential education.  Understand, but only intellectually.  In my heart this is all unthinkable.  An unimaginable move.

I harbor resentment for all the normalcy other children get to have, what with arguments over homework and setting the dinner table and who pushed who, all the while excitedly counting down the days til’ Christmas…and then I squelch the resentment by reminding myself that there really is no such thing as normalcy:  normal is a dryer setting, I declare here after all, and pain and joy and suffering and hope and anguish are everywhere.  

I feel guilt too, for what could I have done differently to change what has happened?  What should and could I be doing now to effect a difference, in our lives, at Wildwood School like the parent volunteers, in the community, to advocate for better care and treatment of individuals with autism and other disabilities?

There are so many things I don’t know.  So much over which I have no control.   So much helplessness.  What is going on in our boy’s heart?  In his body, his brain?  What does he wish he could tell us?

Are you in pain, sweet little boo?  Are you frustrated because you want to speak volumes you cannot express?

Can I love the pain out of you?  Hug the frustration away?

 He lies on the table with his markers lined up next to him.  He is looking out of the window with his little butt in the air, dressed in comfortable sweats, asking for grandma.  His dependence and innocence are complete.

Fifty years ago he may have been hidden away in a back room somewhere.  A few hundred years ago he may have been labeled “possessed” and burned at the stake.

Today he will be the focus of people who love him, who will work together to get him the best care and education possible. 

But I’m really scared anyway.

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never be the kind with an ordinary life

Posted in autism, behavior, singing, tagged , , , , , , , on December 8, 2010| 1 Comment »

Happy boy is still with us – only a few attacks here and there, none of which I’ve witnessed, at least not in quite a few days now.  Maybe even a week.  We took Jonah to a new pediatrician on Monday – one who specializes in developmental disabilities and behavioral problems.  I loved him; he’s level-headed, kind, and intelligent.  If we want Jonah to have his second chicken pox shot or the flu shot we’ll have to go back, but we might opt out of both of them this year.

We’re putting the wheels in motion to go to Boston to see a pediatric rheumatologist (there aren’t any around here and the ones for adults won’t even see children, for some reason) because of Jonah’s uveitis and iritis, and the synovitis they found some time ago in his hip and jaw.  He may have pediatric arthritis, they’re thinking, so that’s our next big medical project to tackle.

Also on the Jonah horizon is a big meeting tomorrow with the school district officials – teachers from Wildwood will be there, and his caseworker from Catholic Charities, and of course Andy and me, and we’ll try to decide what’s the best course of action educationally and placement-wise for Jonah.  I know we have to at least investigate our options but now that he’s so much better I want to keep him home and at Wildwood School.  They say he’s participating more and yesterday he had no aggressions at school at all – granted it was a half day, but still…he came home with math sheets all completed (it still baffles me that the kid can solve math problems) and a hastily scribbled art project (he’s not the biggest fan of coloring, though he does love to carry markers and colored pencils around, & roll them on the table and floor).  He still falls asleep early but he sleeps well, and peacefully, and I am grateful for every day he is himself again.

I love to see him skip around…hear him happy, even loud, again – lately he has been singing and shouting out the “hear-ar-ar-ar-ah-art” part to Guster’s “This is How it Feels to Have a Broken Heart” (which, despite its title, is actually kind of a lively song).

“We’ve colored in the lines and followed all the signs
Fought a war till the war was over;
Said you’d never be the kind with an ordinary life…”

~ Guster

(You can say that again, guys)

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lessons

Posted in autism, behavior, Uncategorized, tagged , , , , , , on December 1, 2010| 1 Comment »

Since he’s been on Atavan, Jonah’s had long periods of drowsiness punctuated by his personality shining through, complete with talk of train and moneycoin.  (Was there a time when I actually was exasperated by his innocuous obsessions?)

Two doctors today – the eye doc, and Jonah’s first visit with a child psychiatrist.  The good news is that the eye doc said the pressure in his left eye was much lower and better, though they had to come out to the waiting room to give Jonah the eye pressure test.  Jonah had flipped out, attacking Andy, and Andy restrained him in a waiting room chair so they could get a quick pressure read.  Then Andy and Jonah left, and I stayed behind to talk to the doc.

After that they picked me up and we went home to wait for our next appointment.  Jonah seemed confused, first asking for one thing and then another.  “Museum?”  he asked.  “Toon-fish-sanwich?”  He remembers that when we go to the museum, we usually stop at Subway for a tuna fish sandwich.  He rotated through the list of things he wanted and then settled on bath.  After a few minutes in the bath, he attacked me, and Andy held him in his room until we could calm him down.  He’s on all three of his meds at this point and I’m thinking why are the meds simultaneously doping him and not really mitigating the aggression?

Finally we calmed him, mimicking taking deep breaths (let it out through a straw, bunny, breathe deep through your nose) and talking him into another car ride to the psych doc, where the social worker from Wildwood met us.  Jonah had an aggression in the waiting room and then another almost as soon as he went in to the doc’s office.  Andy ended up taking him out to the car while I spoke to the doc – which turns out to have not been the most ideal plan, as necessary as it seemed at the time, because the doc’s got to interact with Jonah.  So I spoke at length with the doc about Jonah; I asked a ton of questions, he suggested both Jonah and I likely had post traumatic stress disorder (which I always thought was for war-scarred soldiers and natural disaster survivors; when I asked what they did for that, he told me generally, not much), he doubled the dose of Jonah’s Risperdal while weaning off the Clonodine and warning us to use the Atavan sparingly, and we made another appointment in 3 weeks.

Before I left, though, I learned a hard lesson or two.  One is about judgment.  For instance, Andy and I had always been anti-meds – but for us that was like being 22 and saying you’ll never dye your hair – easy to say at 22 because you haven’t got any greys.   We never needed to medicate Jonah, so it was easy for us to be anti-med; Jonah clearly had autism but we thought we had done all the “right” things – early intervention, a variety of therapies, specialized schooling, etc. and so he was doing well…until the aggressions began.  Then we were no longer 22 year olds with nary a grey hair — we were rapidly aging, fast-greying, hair-dyeing champions.  I don’t mean to imply that we’ve suddenly become pro-medication, but it’s certainly become something we needed desperately – at least temporarily – in order to stop what was happening.  As a result, I’ve ceased judging others’ decisions about pretty much anything.  What works for one will not work for all, and that’s just the way it is.  We clearly have to try and try and try until we find the right mix of therapies and medications and whatever else until we have our lively, happy little boy back.

“Have you seen this kind of thing before?” I asked the doc naively after relating some of the more violent incidents.  He nodded in that deliberately-patient way you do when someone asks an incredibly innocent question.  “All the time,” he answered.  He told me two or three stories of parents beaten badly by their children before the families could get help – of situations far worse than ours.  When I asked what is done for these people in emergencies, he said unfortunately, not much.  When I asked why nobody could help us, he told me the system is essentially broken.

Then I stopped asking.

Andy had gone home with Jonah so K from Wildwood generously offered me a ride home. I thought a lot today about how there doesn’t seem to be any clear plan to fix any of these broken things.

How dangerous a position so many people are in.

How somebody needs to do something so there is a place for people in unquestionably dangerous emergency situations – a facility to immediately accommodate children who are non-verbal, or violent, or mentally ill, whether or not they are toilet trained, or have a high enough IQ, or are the right age, or carry the right insurance.

How I should become an advocate for better care, once the smoke clears on my own mess.

How, as frustrated and passionate as I am about this, there realistically is little hope of me making any difference.

It’s also beginning to look more and more like residential educational placement is the best option for Jonah, with the goal of getting him back home as soon as possible.  The reality is still far enough away to be an abstraction in my mind, though it is beginning to enter my consciousness in a way that feels like 90% horror and 10% relief.

That’s assuming there is a place for him, and Wildwood can present a strong case to the school district for its necessity.  I used to think we had the strongest case on the planet; now I know they’ve probably seen it all.   But the folks at Wildwood are stating that the quality of Jonah’s education, where once excellent, has deteriorated into basic behavior management and sensory input (riding him around on a scooter with a weighted blanket on it) with very little participation on Jonah’s part.  I don’t want that for my child.  I want him to enjoy activities and benefit from academics, play and sing and do all the things he did such a short time ago.   We’ll try the different dosages and hope for the best outcome, so we can keep him home where I want him.

I want Jonah to shine.

If that means we need to place him in a facility, then I best start coming to terms with that.  God help me come to terms with it.  I don’t know if I can.  Maybe I can.

But not today.

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black wednesday, black thursday, and a big fat friday of black

Posted in autism, behavior, Uncategorized, tagged , , , , on November 27, 2010| 4 Comments »

part one:  black wednesday – I’m very glad I posted my giving of thanks when I did, when I had a minute to type between leaving work early and my dad’s arrival, before the deep descent, before I forgot to be thankful for anything at all in the midst of this maelstrom.  When my father came, we went together to pick up Jonah at the Center for the Disabled’s afterschool program; I walked in and knew immediately from the caregiver’s faces there was bad news.  He’d attacked the whole time…children, too.  The director essentially told us Jonah is on the verge of being kicked out of the program.

Deflated again, (how many times can a balloon be deflated before it is limp and dead?) my father and I each took one of Jonah’s hands and led him out of the building.  My father wanted to sit in the backseat with Jonah; I warned him strongly against it, so he sat in the passenger seat.  I don’t remember what the plan was but I knew there wasn’t much food in the house so I suggested we ride to Burger King and get food at the drive-thru to take home.

We got all set up in the kicthen with the food, and Jonah seemed fine.  Then he made the hand-swat motion, and I knew he was probably ramping up for an attack, but this truly insane hope rises in me every time right along with the panic, and before I could think another thought, he attacked full-force at my father,  knocking the chair over, scattering pickles and french fries and drink everywhere, my dad frantically wrestling him to the floor while I did my best to hold Jonah’s head down so he couldn’t bite.  My dad was bitten anyway, several times, then kicked hard all over his torso – I heard his moans and desperate pleas for Jonah to get off him, awful sounds I never wanted to hear – helpless groans, like we were being attacked in a back alley somewhere.

Finally I gasped to my father that he should get up and run away from Jonah.  He did, and Jonah went straight for me.  I ran into his room, knowing he’d follow me there, and he did, mangling my glasses, ripping at my hair, kicking and hitting and biting me — my dad came back in to try to help and Jonah beat the shit out of us both.  Finally I shoved Jonah toward and onto his bed, and my father and I got the hell out of the room.  Jonah’s room has no lock so my dad and I took turns holding the door knob as hard as we could while we looked at each other with terrified, disbelieving eyes.  Then we heard Jonah fling himself at the window, and SMASH SMASH SMASH he pounded his feet against it – thank God we’d had the Plexiglas installed – I opened the door briefly to check and see if he was okay, and in a rage he flung himself at me again.  I shut his door again and tried hard not to sob, scream, punch the wall, wail to the universe that I CAN’T TAKE THIS ANYMORE.  My dad, in a broken voice, agreed that we should call 911.  We were afraid Jonah’d pull the dresser over on himself, that he’d get out of the room and hurt us more, that we couldn’t care for him and keep him (or us) safe.

It was the fourth 911 call I have made in 4 months.  Then I called Andy, who came home from work.  He got there first, but shortly after that 3 Albany Police Department cops arrived, 2 of whom were kind but helpless — a third, Officer W, was just plain mean – accusatory in his manner and voice, as though we’d called them over for nothing.  “Why are you so unkind?” I asked him at one point. He left the house eventually and I talked to the other 2 cops.  “We don’t have anything we can do in this situation,” explained one of them.  “We can’t very well arrest him.”  No shit, but can you help us? The answer was no.  Nope, they couldn’t help us.  So the kindest of the three officers made a phone call somewhere and found out they could get child psychiatric mobile crisis involved, but last time that happened we ended up in the CDPC crisis center for four days.  No thank you.  So they left us, not wanting to meet my pleading eyes.  The cops left, and I sat there thinking my son beat up my dad and me and we called 911 to keep everyone safe and they could not help us at all.

Jonah had worked himself into an exhaustion and fell asleep in his bed, so my shaken dad finally left.  I wrapped myself in a blanket on the couch and stared numbly into space.  911 is a last resort, right?  A way to get someone to do something, finally, to help us?  A way to hook us into emergency placement?  A way to save our crumbling, threadbare, intolerable situation?

Wrong.

part two:  black thursday – I brought M to my mom’s for Thanksgiving, and Andy went to his parents’ house.  It was just the four of us, mom, me, M, and Jonah, at the Thanksgiving table, and Jonah was happily eating a buttered roll, when BAM out of nowhere Jonah attacked, sending dishes flying and grabbing my glasses off my face.  M pinned him down on the kicthen floor, but it took him ten minutes or more to get Jonah to the point where we could let him up, my mom could clean and pack up some food for us to take with us, and we could leave. I mushed my glasses into a semblance of shape and we drove away.

Later I dropped Jonah off at the house and to Andy (along with a piece of pumpkin pie from my mom), where Jonah soon fell asleep –and M and I ate our Thanksgiving meal alone in his small apartment, the two of us drained, shaky, and quiet.

part three:  a big fat friday of black – On Black Friday Andy and I decided to start investigating placement for Jonah.  I called OD Heck (what I thought was a local residential placement center in Schenectady) and was told there were no more children’s residential services there; they transferred me to an Albany office, some developmental disability place, and they transferred me somewhere else.  Finally I spoke with a kind psychologist from DDSO  (developmental disability services office?) who sympathized but could do little else.  Nothing exists to help us.  He thought maybe we could try the ER.  Then Jonah attacked, viciously pulling my hair and mangling my glasses again.  Andy pulled him off me and subdued him in his room, then called the doc and got into a fight with him because the doc wouldn’t help us by adjusting Jonah’s meds or dosage.  “Take him to the Albany Med ER,” he said.  So, having heard the same advice twice from two different people, we did.

I packed up a bag and Jonah’s accordion file folder full of information, and we drove ourselves to Albany Medical Center emergency room where they set us up in a room, took Jonah’s blood pressure and temperature, and listened to our tale.  “So you think he needs to be admitted?”  asked one young doc.  “Yes,” I answered, envisioning a complete work-op with an MRI and whatever else they do to rule out medical causes of behavioral aggressions.  Soon Jonah showed signs of agitation, so we asked for a sedative for him.  The doc came in with 4 other nurses; they gave him a shot of Atavan in his leg. About 10 seconds later came the attack, not a surprise to us, but the meds took so long to work that they all had to keep a firm hold on him for 10 minutes or so.

Even though Jonah became groggy, they expressed surprise that he didn’t fall asleep.  I lie in the bed and tried to get Jonah to snuggle with me and watch Back to the Future on the TV, but he was agitated and kept moving around sluggishly.  The mobile crisis unit came and kindly spoke with us, and it started to look and feel a lot like the whole CDPC experience.  They made phone calls and tried to find a place for Jonah but to no avail.  Albany Med would not admit him.  The doctor there would not adjust his meds.  “I don’t feel comfortable doing that,” she said.  Nobody does, apparently. I asked a few different people what would happen if I were all alone and Jonah tipped a TV over on me and killed me.  No one had an answer for me.  They simply didn’t know.

A kind nurse made Jonah some turkey-balloons out of medical gloves and he crouched in the doorway, playing with the balloons and pleading every few seconds to be “all done?”

Finally the doc conceded and gave us a script for Atavan in pill form to get us through until our appointment to see the child psychiatrist.  So 8 hours and $100 later we left the hospital with what our family doc could have called in over the phone to the pharmacy.  I drove to Lenscrafters (at the mall, on Black Friday of all days) to get my glasses fixed but they were so broken this time they had to give me a whole other pair of frames.  About four hours later, at home, Jonah puked and shortly afterward, he fell asleep.

NOBODY WILL HELP US.

Oh, the terrible irony of finally coming to terms with the fact that we may have to place him and then find there is nowhere he can go, nothing we can do.  I am so angry at a system that gives us no help and no answers and is apparently willing to wait until someone is seriously injured or killed to step the fuck in and DO SOMETHING.

It’s a black Saturday too, folks, but I don’t have it in me to tell that half-completed tale.  

I’m done.

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mangled – the perfect storm

Posted in autism, behavior, Uncategorized, tagged , , , , , , on November 23, 2010| 7 Comments »

It’s 7am and Jonah’s already attacked me – he asked for “train-a” (he’s been putting an “uh” sound on the end of a lot of his words lately) so I told him it was a school day but we could go to see the train after school.  This is a pretty standard conversation in our house so I didn’t expect it when he tore at my face, scratching me near the corner of my eye and mangling my glasses.  For the second time since I bought them on October 23rd, I’ll be at Lenscrafters today to get the glasses fixed.   I think I’m going to be their best customer.  Now the almost-brand-new glasses are really mangled – no matter how I try to push and pull them back into shape they sit crooked on my face.  I look and feel like a broken doll.

It’s “special persons day” at Jonah’s school which means both my mother and father will be there, and Jonah’s classroom is preparing a special Thanksgiving feast; I pray to God and little baby Jason that Jonah’s a good boy, at least for most of the time.

This past weekend Andy took care of Jonah (with help from my mom) while I went to NYC for an adoption conference for work.  Because I am adopted I especially enjoy talking to the prospective adoptive parents, agencies, and attorneys – I was an exhibitor at the conference because we facilitate adoption advertising, and because I did not have Jonah for a day and a half I enjoyed the guilty pleasure of freedom.  In addition to manning an exhibitor table, I was on a panel of parents who spoke about “raising a challenging child.”

All the other parents on the panel had adopted special needs kids – the kids had separation trauma, fetal alcohol syndrome, bipolar disorder, you name it.  One couple had actually adopted 15 kids (!), 3 of which they had to place in a home because of violent or out of control behaviors.  Jonah’s all I’ve got, and to place him is something so hard to comprehend that I’m wild to try everything/anything else we can, as quickly as we can, to seek another way.

Would I have deliberately adopted a special needs child?  My first reaction is to say hell no, but when I was pregnant I told God (naive little big-bellied me) that He could give me a disabled child or a gay child, that I would be okay with either.

My running joke now is that Jonah is probably both disabled and gay.

Someone I met on an autism group on Linked In sent me an obviously self-published book they wrote about their “journey home from autism” – and a children’s book they’d written as well.  Very kind, to send me the books for free, and I haven’t read them yet, but I’m going to use this as an opportunity to bitch that I’m tired of the whole Jenny McCarthy “you too can rescue your child from autism” schtick.    Most of the time I think these “rescued” children were mis-diagnosed in the first place.  I believe that 50 years from now it will be apparent that what we now call “the autism spectrum” is actually about 10 different things.  Jonah was unquestionably born with autism- our family physician noticed issues before he’d even had his first immunization, and in hindsight I can easily see how he was very different from neurotypical babies.  How can that be the same thing as the child who develops normally for however many months, gets a shot, and suddenly “falls off the planet,” losing all his or her social, verbal, and other developmental accomplishments?  It can’t. The symptoms might mimic each other but the underlying cause and condition isn’t the same.

If anyone had figured out a real, viable way to “rescue” these kids from autism, we’d all be on that fucking bandwagon, trust me.  But what works for one child doesn’t work for another, and the “here’s our amazing story of how we  pulled our precious child out of the bowels of the hell that is autism” books are a dime a dozen nowadays.  You can’t throw a stone at a bookstore without hitting something written by people who want to share the inspirational tale of tirelessly helping their child become “normal” again.

The parents of kids with autism don’t need to feel guilty about what the Superparents accomplished that for some unknown reason the rest of us haven’t been able to.  Since the market is flooded with these Superparent success stories, I think what parents need is for someone to write: this sucks, and I don’t know what to do either, and I’m trying hard, and I’m afraid, and I understand, and I’m in the same boat, in the same perfect storm.  I’m drowning too.

I understand.  I’m drowning too.

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houdini on pcp

Posted in autism, behavior, Wildwood, tagged , , , , , , on November 19, 2010| 1 Comment »

Yesterday I picked Jonah up from afterschool program with more than a little trepidation.  Wednesday, you’ll recall, was hell, and for no reason anyone could figure…aggression after attack, all day long and home as well.  Andy came over to help me; he was there to get Jonah out of the car (which was very cool, because I’d about had it) and he was there when Jonah attacked again a few minutes later.

When I woke up Thursday morning I thought: which kid is the universe is going to hand me today? I guess Jonah’s like a box of chocolates: you never know what you’re gonna get.

sweet angel boy, playing in the bath

I admit I was a kinda gun-shy on Thursday when I picked up little Taz. And I was on target this time.  They told me he’d been in attack mode the whole time, right from the get-go when he came off the bus kicking and hitting.  I thanked them, apologized, and managed to get Jonah in the car without incident. He was safely buckled into his new 5-point harness contraption, but halfway up the first street there was a disabled vehicle and it gummed up the works for about ten minutes before we could get around it.  I guess he got impatient.  For whatever the reason, he started kicking the console, hard.  Bam BAM BAM BAM BAM, the whole time trying to reach me, stretching his body as far low and long as he could.  BAM BAM BAM BAM BAM until I thought he’d break his foot.  “No!” I yelled back at him, the traffic moving now, me dividing my attention between the road and my rising panic:

I’m in a horror movie and there’s a wild creature in the back seat about to escape his bindings.  I hear the unmistakable clicks of Jonah unbuckling the harness buckles, squirming around frantically to get at me: Houdini on PCP.  I’m having visions of Damien Thorn scratching and clawing at his mother’s face in the movie The Omen – and I’m approaching the intersection but Jonah’s succeeding, he’s getting loose, and the kicks are closer – BAM BAM BAM BAM – and I’m pulling my car seat as far forward as it’ll go, smushed into the steering wheel, thinking he’s going to get us killed, and all the while I’m yelling “No!  Jonah, NO!  STOP IT!”  at top volume.  I’m clawing around for my cell phone and I call Andy – thank God he was at the house – to tell him please be outside when we get there, ready to help me.

Then I turn down Euclid, round the pond, and we’re in the home stretch but now he’s really almost out of the restraint, expensive and sturdy as it is.  His seat belt’s still on, but that won’t last once Houdini escapes the harness, and it’s going to happen any second.  Luckily there are cars in front of me but not behind, so I hit the brakes harder than I need to, and it shocks him into just sitting there…but only for about a block.  So I speed up a little and he’s pushed back in his seat, unsettled again by the sudden car motion…but only for about another block.  I hit the brakes again.  Then speed up.  Then hit the brakes.  Then speed up.  In this ridiculous manner, I buck my way home, like someone learning to drive a stick and failing miserably.

The pendulum swings again today, with only two aggressions at school, none at afterschool, and none at home.  Now he’s asleep, and I’m here with my tea to tell the tale of Dr. Jekyll and Mr. Hyde.  Once again I am the grateful recipient of deliberate acts of kindness this week, including two delicious dinners, a box of peanut-buttery Do-si-dos (made all the more awesome because they’re impossible to find this time of year), and a day of almost-aggression-free Jonah.  Thank you.

I’ll take everything I can get.

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