Feeds:
Posts
Comments

Posts Tagged ‘Albany Medical Center’

There is something almost routine, now, about kissing my son goodbye after a visit or a doctor appointment.  But sometimes I step back unwittingly from that routine and kissing my son goodbye comes with a horror that feels like the day we said goodbye for that first awful time at the school. 

My mind is pretty good at erasing or dumping some memories and then it refuses to get rid of others;  I will never be able to escape the memory of kissing my son goodbye that day.  I don’t think I’ve ever held my breath for longer than when they led him away, out the door, down the hall.  Gone. 

When Andy and Jonah left today it felt like that.  I had a difficult time listening to what the doctor was saying and absorbing it all.  I gave her the direct number of Jonah’s nurse at school and I wrote down a lot of information before I left, though.  The conversation helped to snap me out of longing to run after Jonah and snatch him up into my arms.

For a while I have needed to go out in an empty field somewhere and scream my head off.  Really scream. 

It sits inside me, that scream.

World Autism Day.  Light it up Blue.  Good.  Make them aware.  Research, figure this out.  Please and thank you.

Today the doctor was a pediatric rheumatologist who is only in Albany two times a week.

Remember when we had to drive all the way to Boston Children’s Hospital?

There was a rumor that she had a practice in Red Hook, close to Boo, but no one could confirm this.   So E took matters into her own hands and found out this doctor lives in Rhinebeck (which also is near where Jonah lives).  E tracked her down and called her home phone to ask her does she have a practice in Red Hook or not?  

(E is badass.  I told you so.  She gets shit done).  But the doc’s got no practice in Red Hook.  

So today Jonah, in honor of World Autism Day, got his official diagnosis of JRA (Juvenile Rheumatoid Arthritis).   Now I am becoming acquainted with yet another disorder/disease.  There are several kinds of JRA, and Jonah’s is called Pauciarticular Onset JRA – the most common form of JRA.  Of the three JRA subtypes, (reads the brochure) children with pauciarticular have the highest risk for getting chronic eye inflammation called uveitis.   So it is piecing together, albeit slowly.  Next Tuesday we’re going back to Dr. Simmons again to see what now.  I’m researching Methotrexate, the drug they’re thinking of recommending.

As I typed this CNN e-mailed and asked me if I’d like to write some more, so I said yes of course, in honor of World Autism Month.  My favorite pressure, the pressure to write.  I guess because it doesn’t feel like pressure at all, the writing.  But as before I have no given theme or direction — they’re entrusting that to me — so I’ll kind of be winging it.  I am honored just to be asked.

Here are some pics of Jonah from the doctor’s office today – I love taking pics of Boo!

First he was happy.  “What color are the flowers, Boo?  Let’s count them!  1…2…3…4…”

Then he got antsy and needed to walk the hallways.  Black kitty he said, pointing. (I think it was actually an owl.)

Luckily we were at the end of a hallway with a big window.  He visited here quite a few times.  It makes you wish you had one of those passes you get if you take your kid w/autism to Disney.  They go first.  No waiting.  Seems like implementing this at the doctor’s would be a really good idea.

I have to say though, she was very cool, this doc.  We’ve been fortunate to have caring doctors for Boo.  A doctor even took the time to help me find where to go when I’d gotten lost.  Thank you, Dr. D.

“Grab a hold
Take these melodies with your hands
Write a song to sing
Isn’t such a bad, bad world

And I say these times are strange
I can feel it in the night
I’m standing in the dark
Holding up for the light

And here I’ll remain
‘Til the great sun shines
Standing in the dark
Waiting up for the light…”

~ Guster, Bad Bad World

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

%d bloggers like this: