Feeds:
Posts
Comments

Archive for October, 2010

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

Read Full Post »

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.

Read Full Post »

the last straw – part one

Posted in autism, behavior, Uncategorized, tagged , , , , on October 27, 2010| Leave a Comment »

“What a long, strange trip it’s been…”  ~ The Grateful Dead

If there’s one thing I’ve learned this past week, it’s to never say you’ve bottomed out…’cause there’s always more bottom beneath the ‘bottom’ where you think you are.  There’s always more edge to the cliff you think you’re hanging onto.  At least there was for me.

Let’s see if I can account for the time I’ve been gone.  On Friday at 1:30pm we had a team meeting at CPS office downtown; M watched Jonah for me while my mom, my dad, Andy, me, and various representatives from Jonah’s school and benefit offices met to brainstorm options for my family.  After more than two hours it was determined that I could place Jonah in respite care for the weekend – a private home where a local couple would care for Jonah from 10am Saturday until about 7pm on Sunday.  Then, so the plan went, we would meet again on Tuesday (the 26th) to determine a more long-term course of action.

On Saturday morning I was nervous but I dropped Jonah off at the private home as planned, where this very kind lady took Jonah’s overnight bag, booster seat, his special ‘blankee’, some of his favorite DVDs, and my list of instructions and details.  The lady and her husband take in foster kids all the time, including developmentally disabled and fetal alcohol syndrome children – in fact they had 3 or 4 of these kids in the home when I came – and she assured me that Jonah’s violent behavior was nothing she couldn’t handle.  Jonah took to the environment gladly, not clinging to me or seeming upset when I left, which made it easier.  I thanked her, she hugged me, and I left.

I whispered a Hail Mary under my breath and headed straight to Colonie Center mall with M to get an eye exam and new glasses at the one-hour shop.  Because Jonah is always grabbing at my glasses I figured I could use my old pair as a spare.  I bought two pair – one regular and one sunglasses – and then M and I ate in the food court.  The whole time I felt very strange, not needing to worry about running out of time before I had to pick Jonah up, and I kept fighting the urge to call and see how he was doing, even though it had only been 2 hours by then since I’d dropped him off.

After the mall M and I headed to the grocery store to shop.  Halfway through the store my cell phone rang – it was the lady providing respite care.  She explained I’d need to pick Jonah up – that it wasn’t working out.  They’d taken a car ride in their big van to ‘leaf peep’ when, without warning, Jonah launched himself at their foster child, an infant with cystic fibrosis, and scratched his face up pretty bad.

Four hours, he lasted.  Four hours.  Shaking, I hung up, purchased the groceries in my cart, and headed over to get him.  I apologized profusely to the woman and was heartsick at the sight of the baby’s scratched and bleeding face.  I gathered Jonah’s things and signed some paperwork while M put him in the car.

Then we headed to my house, but before we got there, Jonah attacked again from the backseat.  He couldn’t reach us but I was a frazzled mess so I called Four Winds to do an over-the-phone pre-intake screening, an option that had been mentioned at the CPS team meeting on Friday.  They told me there were no beds but my case would be reviewed on Monday.   “But what can I do until then?” I asked, desperate.  They told me to call Mobile Crisis, so I did.  Three policemen and a caseworker from CDPC  (the Capital District Psychiatric Center) showed up about 15 minutes later and we got a police escort to their crisis unit.  When they got Jonah out of the car to walk him inside, he launched an attack so violent it took 3 policeman and M to hold him down.  Four times he attacked before they could even get him in the door.  Like someone on PCP, my 55-pound boy kicked, bit, scratched, and fought with superhuman strength.  Finally they got him into the ‘safe room’ (literally padded with rubber walls, with only a mattress and blanket inside it) and dosed him with some Risperdal.  I held it together for a while and then paced the halls, crying in anguish and frustration and helplessness.

Jonah in the safe room

We literally lived in the Children’s Waiting Room of the CDPC crisis unit for the next three days and nights.

Part two to follow…

Read Full Post »

no more

Posted in autism, tagged , on October 22, 2010| 7 Comments »

I don’t have but a moment to log on.  I’ve gone from the frying pan into the fire; Jonah woke up in the wee hours of the morning sick and now is in a big chair wrapped in a blanket, pale as a ghost, sipping ginger ale and watching Thomas the Tank Engine and saying “swat!  swat!” — and I can only hope he is too weak to try to hurt me because I can’t send him to school and I can’t go to work and I am now officially pushed to the edge of the cliff where I cling to this existence.

Now there are piles of laundry and nothing to eat in the house and a long, strange day ahead of me where just about anything can happen. Even if a respite place has room for Jonah now I don’t know if they’ll take him if he’s sick.  The weekend is looming and my nerves are shot to hell.  There’s no way to sugarcoat this, even if I wanted to…

Happy Friday.

Read Full Post »

chip by crack by piece

Posted in autism, behavior, trains, Uncategorized, tagged , , , on October 21, 2010| 4 Comments »

I have been exhausted; too tired to think or type down any thoughts that may have sifted through the sleepiness.

On Tuesday Jonah’s school had a half day, so I had to pick him up at 11:30am.  I dreaded it.  When I arrived he’d already had attack incidents at school but I’d just bought that kick-ass harness contraption so I knew he’d be safe in the car.  It is a sickening, saddening, surreal feeling to be afraid to let your child out of his safety harness for fear he will attack you.  But I was too chicken to have Jonah in the house with me alone.  So I literally drove him around until M met me at 3pm to take him to a doctor appointment I’d made for him (almost all the respite/services/ placements/ programs I’m applying for require a current physical).

After I picked him up from school, at Jonah’s request, we headed to Voorheesville to see the trains.  Here we had the first real test of Jonah’s new safety harness, when for no reason he flipped out and tried to launch himself at me.

It is a weird thing to reach for your camera at a time like this, but I feel so journalistic now that it’s a natural instinct.  You can see that although the harness kept his torso back, his legs were free to kick.  Of course I’d thought to remove his shoes, but bare bony ankles hurt too.  After I took the picture I got the hell out of the car and watched, shaking, as he BAM BAM BAM-ed his foot against the console armrest.  I quit smoking almost 10 years ago but it was a smoke-a-cigarette-and-get-your-shit-together moment if there ever was one.

I’ll be looking into a leg/foot restraint next.  After he kicked himself out of energy, by some miracle of miracles, we saw four trains – two at the same time – and Jonah was once again happy.

Then we visited a drive-thru and went up for a ride through Thatcher Park.  Jonah was calm but I knew it could change at any time, for any reason, and the whole time I’m thinking this is ridiculous.  I can’t live like this, afraid to let my child out of the car until I have help.

Finally M and I took Jonah to the doctor and he was pretty good, though I was kind of a wreck.  After the physical and the shot Jonah needed (which didn’t elicit a freak-out attack, like you’d think it would), M took Jonah to the car and I stayed behind to talk to the doc.  Doc came in, pulled a stool up to me, and said “I’m going to say something that’s going to sound horrible, and I’m sorry. But I think it’s time to investigate respite placement for Jonah.”  He explained that I am not going to be able to handle this, emotionally or physically, and that it wasn’t safe for Jonah or for me, or for my mental health.  So I nodded numbly and got some information from him about who I’d need to talk to, and then I left.  Within hours I had a second opinion from my favorite doctor on the planet, and he told me the same thing.

So I considered it.  I thought about it and I cried over it and I had nightmares of it.  On Wednesday, when M could not be with me, my cousin Brian came down to stay with me and Jonah (and he got to witness a mid-level attack on me, too fast for him to stop, which mangled my glasses yet again and gave me that bonus good ol’ “nose smashed into the brain” sensation) until M could come back to help.  I just have to keep someone with me, all the time.  All the time.

I  keep someone with me

and I remind myself to breathe

and I have crying jags that won’t stop

and I have moments of power and strength

and I keep hoping, and feeling the hope crushed, and hoping again.

and it’s breaking me down, all of this, and chip by crack by piece I have come to the place I am today, where I am investigating temporary overnight respite homes for Jonah….to keep him safe, to keep me safe, to keep me from losing my mind altogether and being of no use to either of us.

I do not have help this weekend.  I had to drive Jonah to school this morning (because I’d forgotten his harness at after-school program the day before and they won’t let him ride the bus without it) and then I realized halfway there I’d also forgotten his book bag with his lunch in it – and then on the way he launched another few attacks at me — kicking, screaming, thrashing — and by the time I got to the school, my nerves were so frazzled that I actually called the school on my cell from the front driveway and cried to them to please send someone out for my son and a social worker out for me.

They came and collected Jonah, and in the social worker’s office I asked her tearfully to please help me find some kind of respite care before the weekend.  Please.  As unimaginable as it is going to be to walk away from a home where my son will be for however long he needs to be there, I need this.  Now.  Please.  So she started leaving messages, and so did I.  My father helped me a lot today; we picked Jonah up from school and took him back to the doc for the results of his tine test and my dad stayed with me until M could come back.  I heard back from the social worker and someone from CPS but only to say they were trying.

I am still waiting.  I have one more day until the weekend; I have to believe they will help me tomorrow.

I’ll call and badger and beg if I have to…

Or I don’t know if I am going to make it.

Read Full Post »

we’re all in this together

Posted in autism, behavior, trains, Uncategorized, tagged , , , on October 18, 2010| 3 Comments »

Today Jonah had a ‘3-incident’ day but it’s still less than usual and it was at school, thank God and thank Wildwood and thank his teachers, who are equipped with safe rooms and hold techniques and lots of trained, caring folk to cope with my boy.  (I’d be such a poor special ed teacher, crying like a little girl pushed by a bully every time some kid bit me).

And I never thought I’d love a Monday so much.

Today Jonah was very good at after-school program — and hallelujah the 5-point car harness thing I’d ordered for him came in, so I picked it up at lunchtime.  It looked like kind of a complicated contraption; when I got back to the office, I handed it to co-worker/handyman/mechanically inclined S and asked him to put it together for me.  “Did you even try to do it yourself?”  he asked me.  “Well, no,” I responded sheepishly.  “Then go try first, like a big person!” he half-mocked.

So I did.  I installed that hundred-and-fifty-dollar contraption in the car my own self, and walked upstairs all proud, and S asked me “now don’t you feel empowered?”  and yeah, I had to admit, I did feel empowered.  As if some kind of Superwoman emerged from the ashes of a broken, busted-up, scared little girl.  (If you count installing a car harness to be a superpower).

And Jonah acquiesced nicely to being secured in the thing, so we proceeded to go see his beloved train.  He laughed and giggled the whole way — I kept catching my breath and holding it, forgetting to breathe, almost, thinking:  really?  he’s really happy? and it made me so glad to have my boy back – my sweet, humor-filled, loving, fun, precious little kid.

When the train came he clapped and shouted with joy:

…and then we were rewarded with another train, and when we got home Andy’s mom had dropped off a yummy casserole and m m m for Jonah, and my lovely friend K delivered me a delicious apple sage pork chop dinner with mashed potatoes and stuffing, with amazing desert and candy treats besides – even golden chocolate moneycoin (especially for Jonah).  Sometimes I can see how life works, once I decide I am determined to love it again, come hell or high water…how, as Sara Crewe said in A Little Princess, “The worst never quite comes…”

Jonah was good all night.   Another co-worker, B, had kindly given me a little moneycoin bank for Jonah, and the kid played happily on the floor with it, letting out big shrieks of joy (that maybe would have annoyed the crap out of me two months ago but today sounded perfectly awesome).  Then he ate some of his grandma’s casserole, and took a bath, let me help him brush his teeth, and went to bed, all like a very good little angel of a boy.  Whew.  Hooray!  I am grinning ear to ear, almost crying from the amazing wonder of it all.

I ask for help and am getting it.  I push through and am rewarded with days like today.  Thank you, thank you, thank you I tell God in the same mantra of the help me help me help me from the other day.  I appreciate this day.  I appreciate it even if it is only one day of respite.  I appreciate that others are also dealing with awful things and hellish days and long, empty nights.  That I am not alone.

That we are all in this together.

Read Full Post »

the cops and the crisis center

Posted in autism, behavior, trains, Uncategorized, tagged , , , , , , on October 18, 2010| 6 Comments »

“I caught a piece of the sunshine, put a little hope in me
But after the flood raged, there’s nothing really left to see
But I was not done, or beat, the violence was a source of strength:
Not everything is always just as it seems…”

~ Guster

I gave Jonah his pill right off the bat Sunday morning and warily waited to see what kind of kid the world was going to deal me this day.  Attack number one came early; we were sitting together on the couch watching Thomas the Tank Engine when he turned sideways suddenly and kicked me in the face.  I jumped up to avoid further injury and held him on the couch until he quieted, then we counted down together and he seemed okay.  (I think I’ll have a bit of a shiner though).

I guess I got a little squirrely.  I knew I wouldn’t have help until early afternoon at best and I was tired of being afraid.  I decided that even though the new 5-point harness I ordered for our car didn’t arrive yet, I would secure him in the car seat with the shoulder strap, tight, and lap belt too, and pull the driver’s seat up as far as possible.  I figured he’d be safe and I could just drive him to see the train and wherever else, anywhere else, just to eat up time.  He did get to see the train but he was cranky and seemed really light-sensitive.

He asked: car ride? …so I decided to take a familiar loop through Altamont and back around to Voorheesville.   Very suddenly and without provocation, Jonah unbelted his seat belt (which I thought was too far away for him to reach) and launched himself at me, grabbing a chunk of my hair and my glasses, which went flying.  I can’t see to drive without them, so I pulled over abruptly.  Quite automatically, without much thought or premeditation, I found my glasses, got out of the vehicle, closed the door, walked to the front of the car, pulled my cell phone out, dialed 911, and blubbered out the story of my Lifetime TV movie life to the dispatcher.  I’m afraid to drive, I said.  I’m afraid he’s going to make me go off the road and crash, I cried.

Passing motorists gaped at the sobbing lady on her cell phone.  Soon I was surrounded by three emergency vehicles (I told them no ambulance was needed, thanks anyway) all filled with people who wanted to help me but seemed confused as to where to take us exactly.  The whole time Jonah was in the car and pretty calm.  I thought maybe they’d think I was nuts, he was so calm — I wasn’t sure they’d even believe me — but I had teeth bite marks from yesterday and a brand new puffy cheek to prove I was indeed, I guess, a ‘battered mom’.  Finally they put Jonah, car seat and all, in the back of a cruiser and I followed them to the AMC/CDPC crisis center, where a doctor talked to us briefly and I called my friend M to come and meet us there.  I told the doc I thought I could handle things with M’s help; they fed Jonah another dose of clonodine, a peanut butter and jelly sandwich, chips, and a nuclear-orange colored drink while he watched Toy Story and I rested on a bench, closing my eyes, focusing on breathing.  In, out.  In, out.

“…so take a breath and step into the light….everything will be all right…”

~ Guster

He stayed incident-free once we got home, and my friends P and Mx kindly dropped me off some yummy cider, pie, and black soda.  After I put Jonah on the bus to beautiful, blessed Wildwood School, I’m going to bring the cider and pie to work, heat both of them up, sit at my desk, eat, drink, and smile from the complete respite of it all.

Sweet, wonderful work.  Marvelous Monday.

Bring it on.

Read Full Post »

the thing is

Posted in autism, behavior, trains, tagged on October 17, 2010| 4 Comments »

The Thing Is…

by Ellen Bass

…to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.

The thing is how can a body withstand this, indeed?  Can I learn to love this life?  Mary, where did you go?  Why did you impart strength one day only to sap me of it the next?  Is there a God who hears me pleading help me, help me, help me, over and over in the middle of the night like something broken?

The thing is I now don’t care how many people hear me scream and moan and cry.  I don’t care how ugly it all looks to everyone.  I’m sorry, mom.

The thing is I am sapped of energy, of hope.  I can’t do it anymore, I think, and then I do it some more.  I live for the hours between and around and instead of Jonah attacking.  I have bite marks, bruises, hair ripped out, my nose feeling like it’s been smashed into my brain, sore spots all over my body.  Only three times yesterday, he attacked.  Only.  Smashed glass and overturned chairs, cranberry juice dripping from walls.   My tears.  Sobbing.  Shaking.  Trapped.

The thing is it is 6:02am and Jonah is making noise from his room and we are alone and I am afraid of my eight year old son.  I am typing quietly, pressing the keys slowly so he does not hear and stays in bed.

The thing is I am angry.  I am irrationally angry at so many people.  I am angry at everyone who gets to live their lives in peace and calm.  On Monday I will arrive at work and there will be conversation of weekends spent “not doing much” or maybe going to a party, or just watching whatever sports game people deem important and fun right now.  Of dinners and friends, of haunted hay rides and leaf-peeping and apple pie.  Of blessed normalcy.  I am angry because there is no chance of that for me now, not a snowball’s chance in hell of any of it, and I am envious, and sometimes bitter, and I walk among all these people everywhere and even if I share with them some piece of my story nobody who hasn’t lived it has any fucking clue and most don’t care anyway.

The thing is I am resentful.  I am resentful that my husband has left me to pick up the pieces.  I am resentful that Child Protective Services has come to my home and that they took pictures of my son’s bruises and interrogated me about what Andy did, and for how long, and did I know about it, and then lectured me about how it could’ve been just like Jonathan Carey, that he could have killed our son.  Lectured me.  Go up to fucking Saratoga and lecture him, I want to say.  Go away.  I need Adult Protective Services.  Where the fuck are they?

The thing is I know Andy is not violent.  I know CPS is painting a picture of him that is inaccurate, and ugly, and anything I say to the contrary makes it sound like we were in some sort of secret pact to silently abuse our son, and that pisses me off too.  Andy is a good father. When we had decided to separate a few weeks ago I had no compunction at all about leaving him to be the stay-at-home parent in the house with Jonah and me getting an apartment somewhere.  Of course now that is impossible; I am left to work full time and care for Jonah, and it isn’t fair, and I want to scream and throw a tantrum.  I have a whole new appreciation for single parents everywhere, disabled kids or no.

The thing is Andy calls me 2 or 3 times a day and I try not to let him in on how hard it is here because I know he feels guilty and awful and I know he is trapped too, in this depression and in a program where they have to let him out for him to go — and even when they do let him out, they probably won’t let him help me with Jonah, at least not for a while.  But yesterday when he called at 8:30pm I was lying in bed exhausted and empty and I told him about the day.  Just hang in there, he told me.  I’m so sorry.

The thing is I want help and yesterday there was no one to help me.  My parents tried but they saw the attacks — my dad for the first time — and I think it shocked the holy living shit out of him.  It’s one thing to hear me tell of an “attack” and it is something else entirely to witness it.  At least they cleaned up the aftermath for me while I held Jonah.  Other friends and family want to help but I really can’t have people here – it agitates Jonah – I even had to ask my parents to leave yesterday – and I don’t know what help to ask for.   Please leave some deliciously prepared food on my porch?  Please whisk me away from all of this?  Please trade your life for mine, even for just one day?  Please just don’t leave me, even though I am so incredibly bitchy and raving and messy and weeping?   Please care.  Please pray.  Please please please.

My cousin D came over after I texted her in desperation; she was my savior, speaking to my parents, teaching them how to do holds, telling me that if I need it I can and should call a crisis center who can come and help.  She saved (salvaged?) my day.  The thing is even she cannot fix this.

To top it all off my sink is clogged and there is water and food gunk in there and the Drano didn’t work and there is laundry to do and dried spills to clean and another day to get through before I can escape back to the office and the people with their normal lives for me to watch, like I am an child pressing her face against a glass wall looking in at a party I’m not invited to….that I’ll never be invited to…

The thing is I am tired.

I don’t mean in the I want a long nap way, but in a soul-tired torpor fog way that feels like there’s horror mixed in.

The thing is I don’t care anymore how self-pitying or awful this sounds.  I just don’t care anymore.

The thing is I have to believe that I can hold life like a face
between my palms, a plain face,
no charming smile, no violet eyes,
and I can say, yes, I will take you:

I will love you, again.

Read Full Post »

mother Mary comes to me

Posted in autism, behavior, tagged , , , , , on October 15, 2010| 2 Comments »

“and in my hour of darkness, she is standing right in front of me…”

~ The Beatles

I feel stronger right now than I have in weeks.  Months.  Maybe even years.  In this ‘hour of darkness’ I am getting things done for myself and for my son, and I am standing upright, and I find I am capable.   Reverting to my Catholic upbringing, I pray to Mary:

Help me, Mary.  You had a difficult son too.  You understand.  Help me please. I feel she has. (I always did like Mary).  Now I know a humility that has given me an unexpected strength,  if that’s not too much of a paradox.

I visited Andy in the hospital today and it was good.  There was no poison or animosity – only sorrow, and shared pain, and real love.  We will always love one another.  There is much yet to get through but I can do this thing.  I can do this.

Jonah did very well yesterday at after school program, so I took him to see the train and we saw one right away, which he (of course) loved.

He behaved at home last evening too, and he was a good little boy this morning.

He even woke up laughing. 

Hey mama!  Hey mama! he called — and echoing his laughter, I went to him and covered him in kisses.

Read Full Post »

on the ocean

Posted in autism, behavior, Uncategorized, tagged on October 13, 2010| 7 Comments »

“On the ocean…
I think we’re taking on water…
the storm is on the way,
but I will hold on anyway.”
~ Guster

This is a ridiculously tough post to type, so please forgive any type-os.  I doubt I’ll be editing this one.

I’ve got enough of my mom in me to want to avoid “airing dirty laundry,” as she would put it.  But we’ve reached rock bottom here and I should at least explain why I haven’t been around to post.  Because I just put Jonah to bed and don’t have enough energy to tell the whole tale, I’ll present a Reader’s Digest version of our tumultuous time on the ocean…

This past weekend Jonah had a very rough time behaviorally.  A VERY ROUGH TIME.  On Saturday he threw a toy from the backseat and hit Andy in the head while he was driving.  Andy’s response was way over the top, without a doubt inappropriately so, and I had to take Jonah away from him.  After going back and forth with Andy over the phone – I wanted him to take a break and leave the house for a week or so; at first he refused – Andy decided to check himself in to a hospital.  This was Monday, I guess.  I am so frazzled.  I forget what happened which day.  I don’t know what order things happened in, or how we got here, or how this is became my life.

Jonah continues to be in “random attack mode” and since Monday I have gone into “taking care of business” mode.  I have taken many steps to mitigate the behavior and ensure our financial, emotional and safe survival, including applying for home behavioral support services, getting Jonah on a low dose of clonodine, arranging for a special harness seat on the bus, making a myriad of appointments and phone calls to schools, doctors, agencies, and coordinators to arrange for services so I can still go to work and care for Jonah as well…

…things I took for granted are now huge considerations.  How to go to the grocery store.  How to go to my therapy appointments.  How to sleep.  Eat.  Breathe.  Remain sane.

I’ll go into award-show mode now.  I’ve won nothing but nonetheless am on the podium and have just been called to give credit to those who so deserve it:  I couldn’t have gotten through this weekend without my cousins D and B, who dropped everything to stand by me & get me through this; they’ve helped with Jonah, incurred injury after injury from his attacks, and pulled me up from the waters that threatened to drown me.  My mom has offered her home, also suffered injury at the hands of my out-of-control son, and come to my aid to help even when I am stark raving bitchy.  My dear friend M has stuck by me through so much – rearranged his whole schedule to ensure my safety and ability to cope.  My dad has been very supportive.  My boss has been fantastic.  My friends are caring and there if I need them.  My cousin Brian is ready to jump to help me with whatever I need.  Even the people I supervise at work.  I am grateful.  I am grateful.  I am so incredibly grateful.

This is a trial by fire if there ever was one.  Andy and I had already decided to separate, but I hadn’t said anything just yet; now I may as well tell that too and get it all the major shit over with in one post.

Sorry if all the dirty laundry is stinking to high heaven.  I hope the meds and behavior supports and whatnot serve to bring my sweet boy back.  I hope Andy is getting the care he needs and is okay.  I hope I can keep it together.

If you’re the praying sort, I could use some of that.

We’re staying afloat…

Read Full Post »

Older Posts »