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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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my thanks giving

Posted in autism, Uncategorized, tagged on November 24, 2010| 4 Comments »

Because I have become afraid to be alone with Jonah (rational or not), I’ve called my dad to ask him to please help me pick him up from afterschool, give him a ride to the train (depending on how we was at school today), and help with his dinner, a bath, and getting him to bed.  Andy is working and M can’t help me tonight.  It’s the day before Thanksgiving, so the short supply ‘o’ sitters aren’t around.  Luckily my dad is more than willing to help, and we got out of work a little early today (thanks MKR), so I have a minute to type.

God only knows what four straight days with Jonah will be like.  I don’t have high hopes, and I know I’ll be back soon to complain about how Jonah threw the gravy boat all over grandma at the Thanksgiving dinner table, so I thought I’d write a giving of thanks to balance out all the bitching.

In no particular order, and of course leaving out a multitude of blessings, I am giving thanks:

…for the fact that I don’t have to wait in line at 4am on Black Friday for the toy my child absolutely must have, or worry about whether or not I can afford (or should spoil my child with) whatever latest game system, i-pad, blackberry, etc. a typical 8 year old yearns to own.  I needn’t fret over whether or not to tell my child there is (or isn’t) a Santa Claus.  I won’t be standing in a long queue of fidgety kids and weary parents to get my son’s picture taken with a store Santa.  I don’t have to hear Jonah cry because he got picked to be an ox in the Christmas Pageant instead of Saint Joseph or one of the Wise Men.

Instead, I can wake up on Christmas morning and give Jonah an assortment of things like bubbles, straws, and balloons, and he’ll be happy as a clam.

Of course, my mom will compensate for my blasphemous lack of gifts by turning her living room into a toy store and presenting Jonah with a new winter wardrobe, several electronic toys, expensive musical instruments, a portable dvd player, and whatever Elmo is singing about this year.

I am thankful for pretty much everyone reading this (with the possible exception of Marcia).  There’s so much else and so many more people.  It could go on forever.  I know!  I’ll use pictures.  I wish I had a photo on my computer of my dad, and a few others I’d like to include in the thank-you album.  But here’s a little pictorial of gratitude at any rate.

I am giving thanks for:

hawks (i always say they are my gina, coming to say hello).  and

bright blue color filled autumn days. and

the rensselaer falls, my favorite nature creation spot.  and

M, my true friend and partner in travel.  and

my joyful bunny bopper boo.  and

the opportunity to walk where laura ingalls wilder’s husband spent his boyhood.  and

the wondrous beauty and stillness of deer. and

my three cousin-sisters.  and

my mom.  and

sweet random playground kids.  and

my witty and wonderful dear friend dimma. and

flocks of birds in flight.  and

the ocean, and the way andy and jonah and i all love it.  and

barkley!  and

mx & p yo.  and

rainbows.  and

silly D. and

silly jonah.  and

deep watery vistas.  and

sweet little h.  and

guster in concert!  and

my salespeeps K & Mg & B. and

jack!  (named after laura ingalls wilder’s dog) and

little bunnies (is it fiver?)  and

jonah & his grandma jane.  and

work fun!  and

snuggle hugs.  and

d & e.  and

the best pizza in town.  and

KP & little H, all together for a gorgeous wedding day.  and

b and v and their awesome green wall.  and

wig day.  and

the magic of water…

This year I have done a lot of things, enjoyed the company of many people, seen much beauty, and given not nearly enough thanks.

Thanks.

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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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so much for fine

Posted in autism, behavior, Uncategorized, tagged on November 17, 2010| 1 Comment »

It’s always interesting and enlightening to me to review the old posts here; I feel like I should chart them – become scientist and statistician, calculating probable provocations and correlating causes.   Everything was going in the right direction, wasn’t it?  With minor setbacks, we’d come to a place where he was only (and I use that word with irony) aggressing one to three times a day.

Here I’ve just got to pause and mention (not for the first time, I realize, but it bears repeating) that I get the feeling when I tell someone my son had seven “aggressions” at school today, they are envisioning tantrums.  What’s the big fucking deal? I can almost hear them think.  It may be paranoia on my part, and I know I shouldn’t care either way, but sometimes I want to install a video camera and film the whole kicking, biting, thrashing, hitting, enraged scene sometime to play it back for the world. I actually felt vindicated when it took 4 grown men (3 of them cops) to hold Jonah down on the way into the CDPC crisis center that God-awful day, if only to prove I wasn’t such a pussy after all.

But why am I seeking validation in the midst of this mess?  Maybe because I am beginning to feel slightly unhinged.  I need something to count on, and everything that was solid has liquefied.  Every slope is slippery; every day a question mark.  There’s no consistency to his behaviors.  No reason for them happening today and not yesterday.  Or is there consistency and reason and I simply don’t, or won’t, or can’t see it?

I puzzle it out and puzzle it out but I have no idea.  I want a magic wand, not to wave the autism away but to make him happy again.

I should pitch this life to reality TV producers.  Come look at our crazy-ass household for one day. They’ll jump all over our three-ring-circus existence like white on rice.  CDPC and Four Winds, child protective services and separation.  Violent kid with autism.  Shitty diapers.  Meltdowns.  Mom sobbing.  Dad yelling.  And autism’s such a hot topic right now; it’ll sweep the nation.  I’ll be the new Kate Gosselin.  Ugh.  Somebody shoot me.

This morning Jonah seemed a little, well…squirrely, I guess you’d say.  He had a certain look in his eye I’ve come to recognize and almost fear; that boy communicates more with his eyes than anyone I’ve ever met before.  But I managed to get him fed and dressed and off to school, and I drove happily to work (will I never learn to keep my guard up, to expect a day of difficulty?), then missed a call on my cell from the social worker at Wildwood; she left a voice mail telling me Jonah’d had seven aggressions thus far (by 12:55pm) and did I maybe have some insight or did I know anything about him not feeling well?

I tell you my heart sank.  Seven aggressions?  Seven? So, what, do the meds just suddenly stop working?  Is he feeling sick and he can’t tell me?  (That thought horrifies me).  Is he scared?  Confused?  Does he want something he can’t communicate to us neurotypical folk?  All of the above?  WHAT?!

So I spoke with the social worker (no, I had no insight and no, I had no idea if he wasn’t feeling well), and Andy made a plan to meet Jonah at the Center for the Disabled right when the bus arrived to drop him off, and then take him straight to our house.  My boss allowed me to leave early enough so I could meet them there and Andy could still go to his night job.

When I walked in at 4:30pm, they were in the midst of an after-attack, which is visually similar to a town hit by a tornado, right down to the injured and shaken survivors.  We finally got Jonah quieted down and to bed, so Andy was able to shower and leave for work (late).

Our sitter, a great guy who teaches at Wildwood, came at 5:30pm; I paid him good moneycoin essentially to be an adult sane person to talk to for an hour.  Oh, and I also paid him in literature, compensating his company with a copy of The Curious Incident of the Dog in the Night-time.   Jonah had just fallen asleep when the sitter arrived, and I needed his protection to make sure the kid was going to stay asleep.

Even Andy said he never wants me alone with Jonah again.

That he never wants to be alone with him again.

So much for fine.

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jonah and the crow

Posted in autism, language, Uncategorized, tagged , , , , , , , on November 13, 2010| Leave a Comment »

“Stuck without a captain or a chart,
No one seems to know just who to follow anymore;
Hang on…hang on…there’s a twilight, a night-time and a dawn.
Who knows how long? So hang on…hang on.”

Hang On – Guster, from Ganging Up on the Sun

So I hang on and I hang on and I hang on.  Now I’ve thrown myself back over to the safe side of the cliff.  Is it dawn?  There’s light here.  Solid ground.  And I’m still standing (raking, even, today) in the autumn-chilled sun of mid-November.  Andy is helping with Jonah again and it is near bliss to be able to go into the woods and sit or make pictures

…consciously dropping my shoulders, breathing deep the clean forest air.  I’d almost forgotten I’d have help again.

Jonah attacked once so far today when he was with Andy, in my car.  That safety harness I bought has proven worth its weight in gold.  Now Andy’s off to his new job and Jonah’s napping on the big chair in our family room with a Mother Goose book clutched in his hands; I’m stealing a minute here before we go to my mom’s for spaghetti dinner.

Yesterday when I got home I found a reusable green grocery bag on my porch with a card, chicken dinner, black soda, and some other goodies in it…from friends J & Mi (I’ve got a whole periodic table of the elements going on here with my ‘identity protection system’).  It is a blessed thing to not have to prepare food, and it is humbling to know that people care.   I’m grateful – even as I bitch about our Lifetime TV existence I am grateful.

Andy took Jonah to see Albany’s Veteran’s Day parade on Thursday, and as they were walking from where he’d parked to a decent vantage point, they had to step between two bushes on either side of the path.  Andy tells me that a big crow cawed, practically right in Jonah’s ear, and Jonah stopped short in surprise.  Then the crow cawed again, and some other birds in the other bush answered, and Jonah just stood there, half-fear and half-fascination on his face.  Andy says finally he had to drag Jonah away – that the birds themselves were probably enough of a parade for him.

There’s a fable fit for Aesop in there somewhere:  Jonah and the crow.

I guess the actual parade didn’t do much for him, with all its too-loud brass-filled bands and assorted military vehicles & marching veterans.  He put his hands over his ears for a lot of it so when there was a break in the action, Andy led him away and back to the car.

Moral of the story:  A parade in two bushes is worth one marching down the street.

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mamalove

Posted in Uncategorized on November 11, 2010| 1 Comment »

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to sleep, perchance survive

Posted in autism, Uncategorized, tagged , , on November 10, 2010| 2 Comments »

I can’t believe it’s only Wednesday.

Setting the clocks back sucks – all this darkness.  And Jonah was falling asleep early as it was, around 7pm every night because of the meds, which now means he is out by 6:15 or 6:30pm despite my very best efforts to engage him and keep him awake. I guess I should just let him sleep when he’s tired (we’ve always eaten when we’re hungry, so why not?), and he does stay asleep for 10 or 11 hours lately, so I’m not sure what’s bothering me so much about it – especially since it cuts way back on the amount of time during which he could possibly/might very well attack me with one of his random aggressions.

Maybe I’m bothered because we don’t have much fun together anymore.  I used to chase him through the house, shouting “ROAR!” — and watch him run, screeching with laughter, away from the “monster.”  I hope he wants to play again soon.  I’ve been so wrapped up in his aggressions that I haven’t had a chance, even, to miss the fun.

When I picked him up today at 5:20pm at the Center for the Disability Services, he was already downright listless.  No school tomorrow, so I didn’t worry too much about cramming bath time in there somewhere.

He ate his dinner and I gave him his pills.  I brushed his teeth, deftly administered his eye drop, and asked if he wanted to play with straws on the floor, making letters and shapes.  “No straws?” he answered in a small voice, lilting slightly at the end as if asking a question.  I suggested:

train-on-TV (any one of a number of train shows we’ve recorded or on DVD), then  

camera (even offering him the use of my black camera, a higher end model than the aged silver camera I usually let him use), then

messages (meaning I will let him play through all 15 or so of our answering machine messages, usually a much-sought-after activity for him and a groaner for everyone else, since they’re mostly old political messages and he likes to play them LOUD)

but each time:

“no train-on TV?”

“No camwa?”

“No messa-kiss?”

He just wanted to curl on the couch and go to sleep.

And then I do too.   I don’t watch much TV and though I adore my books, lately I’m too…

(guess what I’m about to say?)

...tired to write, read, talk, think, you name it.  I know it is ridiculously early to go to bed but then what do I care? It’s dark and it’s cold and Jonah’s asleep and I’m tired too, boo.

Momma’s tired too.


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lost at sea

Posted in autism, behavior, Uncategorized, tagged , , , , on October 31, 2010| 4 Comments »

“Since the fall, I’ve been lost at sea
Walking in my sleep
Dreamin’ of the major leagues…

And who’s been calling my name?
Is it me, or is it getting darker in this town?

You know, you know, we’re all just castaways;
We’re cold and wet and naked and surrounded by the waves;
Something in the way you
Hold on, hold on.
Waiting for the land to come again…”

~ Guster

Oh, my little boo.  Now you’re not attacking as much (yesterday not at all) but the meds have taken a toll they tell me is temporary – this stoned look about you, lethargic and “out of it.”  What trade have I made?  Late at night I lie in bed and think I am making tremendous decisions about this precious human being and I think who the hell am I to try this and not that, to demand and declare, to push through only to question everything even as I shoulder-shove the scared aside…

I feel lost at sea.

I am on the defense, though no one is pointing any fingers — at least not to my face.  I have tried alternative therapies I consider innocuous:  rhythmic entrainment therapy, dietary changes, Reiki…I have sailed this ocean of uncertainty that is autism and I am navigating wave-filled waters – some days with intelligence and determination, other days with the barest inkling of how to survive the next 24 hours.

I am anxious.  There are so many changes in my life right now.  I question every move, every motive, every step.  The road not taken loses all its significance except in hindsight.  Am I even making any sense?  I’m tired.  In how many posts have I waved the flag of exhaustion?  Too many, I’m sure.  Everybody’s tired.  I know.

On Friday I flew at hyper-speed and got shit done:  To the insurance company office the moment they opened, forms all filled out, appeal ready, supporting documents in hand.  They handed me something that had to be completed by Jonah’s doc, so I ran to the car in the pouring rain and headed straight there.  Waited while he saw his patient and filled out the form.  Drive directly — do not pass go — back to the insurance company to add my son to my insurance plan; now he’ll have both private and the disability Medicaid waiver.  Then to the Center for the Disabled to make appointments to see a neurologist and a child psychiatrist.  Learned I needed more forms.  Went home to make copies.  They called me before I could even return, telling me I could bring Jonah to see a neurologist at 2:30pm that same day.  Miraculous.  So I cram food in my mouth and my mom helps me make more copies of everything they need and I call the school and we pick up Jonah and head back to the Center for the neurologist appointment.

Jonah attacked the nurse when she took his blood pressure.  I guess they’re used to that kind of thing at the Center for the Disabled because she took it in stride.  The neurologist was a kind doc, letting Jonah sit on the floor in the doorway, asking him questions in a gentle voice, looking through the information I’d provided.  She wants Jonah to have an EEG at Albany Med to take a look at his brain waves.  Then we can get set up to see the Center’s child psychiatrist.

It’s all a long twisted road full of doctors and insurance companies and red tape and waiting lists for help (respite services are starting to trickle in, thank God) and uncertainty and – sometimes – shining rays of hope.  Tomorrow is a long day.  I will be exhibiting at an adoption conference at the Marriott after work.  I do like the adoption conferences; since I’m an adoptee I have a vested interest in these folk and their search to find a child.  (I’d give them Jonah, I’ve joked to myself, but they’d only bring him back).

Today I’m holding fast to the hope.  This morning on our ride to the train there was glorious light breaking through the slate-gray clouds, shining all over the cliffs of Thatcher Park…the mountain trees all rust and sunflower-yellow.

I practically breathed it in, storing its beauty inside me.

I’ll need it to see us through. “Sometimes the light’s all shining on me” ~ The Grateful Dead

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the last straw, part two

Posted in autism, behavior, Uncategorized, tagged , , , , , on October 28, 2010| 11 Comments »

Saturday night after several trips to the safe room, the staff (and the drugs) finally calmed Jonah down.  Someone set us up in the Children’s Waiting Room; at least we were the only ones in there.  The room had a supply of children’s videos (mostly Disney, which Jonah doesn’t really like)  and a TV and DVD player.  They brought in a cot for Jonah to sleep on, and I slept on a 3-foot plastic-covered love seat pushed against the wall.  Luckily I had Jonah’s overnight bag already packed from our trip to the respite home, so I had a supply of diapers, wipes, and some extra clothes.

On Sunday morning M stayed with Jonah so I could drive home quick-like to shower.  While I was gone, a doctor, two med students, and a social worker came in to see Jonah.  They asked if he wanted to take a walk down the hall (both of which sides ended in a locked door).  He said “walk hall?” in his innocent, groggy voice and then they walked him down one end of the hallway.  M followed at a distance, wary of what might happen.  Sure enough, out of nowhere Jonah attacked, grabbing first the glasses of the doctor and scratching her face, then going after the med students and the social worker — hitting, biting, scratching, the whole works.   It took all of them plus M to subdue and hold Jonah down, keep him under control, and get him back to the safe room – then, eventually, back to “our” room.

So we spent most of Sunday on chairs in the hallway like sentries outside the bare, windowless Children’s Waiting Room. Meanwhile, Jonah slept inside on his cot with his blankee, sweaty from the exertion and the meds.  Our nerves shot, we were actually afraid to be in the same room with him. I’d thought to bring along a small supply of one of Jonah’s favorite things – colored straws – and he slept with them clutched in his hand.

For hours that day M and I sat in the cold, bare, too-bright hallway.  Every time we needed to use the bathroom, we had to knock on a door and wait for someone to come out, unlock a door at the end of the hall, and stand with their foot propped against the door until we came back, after which the door would be shut and locked again.  Every time we wanted to leave the building, same thing.  Knock on a door and wait for someone to come out and lead us down the other end of the hall and out 3 different sets of locked doors until we were in the blessed fresh air, only to drive to Stewarts or Subway quickly, grab food, and return.

All this time the social workers and doctors were trying to figure out what the hell to do with us.  Things never happen quickly (if at all) in hospitals on weekends, and crisis intervention wards are much the same.  Sunday passed slowly, without much news.  Four Winds wouldn’t take him because they had no beds – and besides, he was deemed not verbal enough to participate in “therapy sessions.”   The hospitals in the area wouldn’t take him because he was too violent and would need one-on-one care – even though I promised to sit with him 24/7.  Respite homes were called.  Residences.  Institutions.  Always there was a reason he couldn’t go to one of them.  He was too young.  There were no beds.  He was too violent.  A permanent placement home was suggested, but I’m not ready for that drastic a measure yet.  We just started him on meds, for fuck’s sake.  You can’t just expect me to place him in a home without trying other options.

We hoped for better news on Monday.  Sunday night a doctor came to talk to me who I immediately liked.  When he heard how long we’d been waiting in that same room for something to happen, he was appalled.  He thought Jonah needed to be hospitalized to rule out medical causes of the sudden, violent, seizure-like behaviors.  And he thought Jonah might be experiencing something called “steroid psychosis” from the Reticert implant in one eye.  (Jonah needed an eye operation back in February to save the sight in his left eye, and they’d replaced the lens and also implanted the Reticert device which time-releases steroids locally to the eye itself).   But even though it had been in place for months, doc said, the steroid psychosis could happen at any time.  The doc went to investigate and we were hopeful that this would be the thing that could get us on the path to getting out.  A few hours later he came back to report that he couldn’t get us into the hospital and that his theory about steroid psychosis proved unfounded.  And because he was just the night doctor, he soon disappeared.  That night M slept on the cold floor between Jonah and me, just in case Jonah decided to attack.   And anxiously we half-slept, our bodies on an auto-alert for one of Jonah’s furies.  Jonah woke at 3am, agitated and confused, and I knocked on the staff door to request more meds to quiet him again.

I kept family and close friends informed by text; on more than one occasion people brought food and treats to the door, where I’d come out to meet them like a prisoner or cave creature and then secret myself away inside again.   My mom and aunt ran to the store to buy some of Jonah’s favorite Barney and Thomas the Tank Engine DVDs.  Once a day or so I’d ask to be let out of the building (they’d only let me leave if someone was there to watch Jonah, and thank God M was there for most of the time) and I would pace the grounds, crying.   I’d almost always call someone, usually my dad, just to vent.  I can’t believe there isn’t anywhere for us to go, I kept saying.  I’m so tired.  I’m so scared.  I can’t do this anymore.

This whole time, of course, other incoming crisis patients were being questioned in interview rooms just feet away from us.  One guy kept telling the staff to stop experimenting on him.  Another complained that his mother wouldn’t let him use her pots and pans to cook.  A teenage girl walked by with something like pride, sporting a bloodied shirt and bandaged wrist.  An older, obviously drunk man shouted obscenities and demanded that they not throw him out on the street “like last time.”  We found ourselves alternately horrified, curious, saddened, and eventually even entertained by the parade of folk coming in over the course of our long stay.  By Monday afternoon we half-laughed that the psych ward was our new apartment.  We watched The Wizard of Oz three times and picked at the food they offered us once or twice a day.  Our backs ached and our minds reeled and our nerves were strung like piano wire as we waited and waited and waited.

All day long on Monday, whenever Jonah wasn’t medicated or sleeping, he cried and whined.  “Car ride?” he begged.  “Wan go see train?”  Then:  “Home?”  Over and over and over he begged.  “Grandma’s house?”  “Daddy comin’?”  M and I tried to placate him.  “Number one, doctor.  Number two, car ride!” we’d say.  Or:  “Home tomorrow.”  When it got too much for me to listen to Jonah’s incessant pleading, I’d ask to be let outside again where I’d take deep breaths of air, pace, cry, and pray.  Please help me.  Help my little boy.  Please.  Please.  Please.

One social worker tried hard for two days to get us in somewhere.  She kept hitting roadblocks, and eventually started calling in a wider and wider radius outside the Albany area in her search.  There was talk of places in Rochester – New York City – even Boston – where Jonah would be admitted and I could stay at a Ronald McDonald House.  I panicked, thinking of the work I’d miss and how incredibly far away I’d be from M and all my family and friends.  Torn between desperation and an ever-increasing need to get the hell out of CDPC, I awaited some news.  Any news.  There was nothing.

Finally a fantastic social worker from Wildwood came to help.  She started advocating for us and demanding answers.  CPS set up another team meeting (the one originally scheduled for 9am in downtown Albany) at 1:30pm on Tuesday, providing something else didn’t open up for us before then.

It didn’t.

By the time they came to get me for the meeting, my mind was made up.  I’d had enough:  we were leaving, no matter what I had to do.  The sensory deprivation alone was probably damaging all of us — especially Jonah — by then, and I wanted out.  During the meeting, attended by representatives and caseworkers from Wildwood, CPS, CDPC,  OPWDD, and other acronym-laden places, I announced this in no uncertain terms.  “We’re going home,” I stated flatly. Everyone got a chance to talk, and brainstorm, and the events since Friday were related, but mostly I got placed on a lot of waiting lists for different support services and respite care places.  My dad spoke up at one point, saying he loved Jonah dearly but his main concern was for me.  “My daughter can’t take much more of this,” he said.  “She’s done an incredible amount of legwork and research, and she is a strong, smart woman.  But if she’s not assisted, how can she help her son?”  I was flattered at my dad’s view of what I regarded as merely surviving, and was recharged anew to insist we go home.

In fact I used the room phone right in the middle of the meeting to call my family doc and ask for a prescription of the meds.  Then I told the people assembled that I would continue to pursue medical answers for Jonah on an outpatient basis, and I would wait to hear from several interested respite sitters from Wildwood School, plugging them in wherever I could.  I think those assembled were relieved.  I don’t know how long they would have kept us in a holding pattern at CDPC, but after three nights and three days of it, I simply couldn’t take it anymore.

After the meeting, I went down to the cot where Jonah was sleeping and I gently woke him.  “Guess what, bunny?”  I said brightly.  “We’re going home!”  As tired and groggy as he was, Jonah shot right up and parroted “home?!”  So we packed up all our accumulated crap and got he hell out of there.  We went to see the train and we visited grandma and we ate spaghetti and meatballs.  We even slept in a bed (oh, the sweet glory of a bed) for the first time in four nights.

I sent Jonah back to school on Wednesday, using the day to make phone calls to ten thousand different people and agencies, seeking respite care so I could make it to work when Jonah had a day off from school or was on a break.  I don’t know when Andy will be able to have supervised visits again, let alone unsupervised – and I have three important business trips coming up in November to try my damnedest to make happen.

Jonah struggled behaviorally on Wednesday but did better today.  And no aggressions at home at all, thank God and little baby Jason.  Now I have to fight our insurance company to prove this is a ‘qualifying event‘ to get him back on my plan so he can see all the docs he needs to see who won’t take Medicaid. (I’d set him up two years ago on the Medicaid waiver for individuals with disabilities, not realizing I should have kept my primary insurance in place for him as well).  And I need that respite care, stat.  I have another thousand calls to make tomorrow after doing a hundred things today (calling the Albany Autism Society, picking up Jonah’s eye drops, new meds & diapers, pestering Catholic Charities, and even speaking with Michael Carey), and now I’m geared up for a fight with the insurance company.  I will be at their office in person first thing in the morning with an appeal form all filled out, ready to advocate for myself and my son.

If our situation isn’t a qualifying event, dammit, I don’t know what is.

This is getting downright ridiculous.  How did everything go so haywire in such a few short months?  It’s as if I started this blog with perfect timing to provide my readers with a front-row seat for this train wreck of my life.

I actually have to remind myself to breathe – and there are times I am so exhausted and dispirited, I don’t even want to anymore.  Some people say I am strong but I’m not strong.  I haven’t lifted anything; something has been placed upon me.  I haven’t held up under pressure; I’ve yielded to tears and self-pity and weakness.  And worst of all, I haven’t accomplished anything more than arranging for stronger meds and places on waiting lists.  It isn’t enough.  Our entire existence depends on my job, and I have to protect our livelihood.

I’ll do just that tomorrow, dammit, or die trying.

– – –

Thank you to everyone who has written or commented with suggestions and support.  I hear you, and am grateful.

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