The Never Normal

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.

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

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