Feeds:
Posts
Comments

Archive for the ‘Uncategorized’ Category

And so the child who once wouldn’t wear a hat or a hood or a cap, no matter what the circumstance, is now the teenager who wears his hood up and tied securely around his face.  I have several photos of him, several weeks in a row, sitting in the back on car ride (he hasn’t been coming in to Andy’s apartment for his visits lately).  In each photo he’s got the blue coat on with its hood up.  Last Sunday while parked in Andy’s driveway, Jonah declared blue shirt on?  – so Andy went inside and changed into one of many blue shirts he keeps in a special place for just such a request.  Thus appropriately garbed, he got back in the car and prepared for another ride.

My mother, who stays back at the apartment for these rides, visits Jonah in the car when we come back and park after each loop.  Nearly always she has a cheeseburger and fries, and this week she’d brought him 4 Thin Mint Girl Scout cookies as well.  Jonah has been happy, silly, all smiles and loving his rides, rocking in his seat to hip-hop and Top 40, wanting it as loud as we’ll allow.  On?  On?!  (It means louder, please in Jonahspeak). There is a CD of dance music I made for him more than ten years ago now, and he asks for it by requesting Mama CD?  Week after week, once this particular CD is in, he requests 3 specific numbers of song tracks and then says all done mama CD.

This time, however, we pulled into the driveway during the 3rd song – and, distracted by grandma and cheeseburger, Jonah wasn’t on top of his DJ game so the CD continued to play.  I didn’t know he could even see the track numbers on the dashboard CD display, but when Andy got back in the car for a second loop, Jonah piped up: 13?  

Andy went to track 13, the song Funkytown came on, and Jonah wanted it louder right away:  On?  When it was over he said 13? again.  And again, and then once more, before deciding he’d had enough talkin’ bout moo-ooo-vin’ and wanted some radio.  Last weekend I was fighting off a migraine and had to cut my visit one loop short because I couldn’t take another song.

Hopefully, with the coming of the springtime we’ll get him out of the car and into the apartment or over to the park, even.  For now we’re all just collectively grateful he’s been good.  His move to the new residence seems to have coincided with the good, though I hate to play the cause and effect game, as it proves faulty at least some of the time.

Grateful are we, as always, to the caregivers at his residence and school.  Last week I walked down to the Capitol and joined hundreds of other parents, care workers, and clients for the Be Fair to Direct Care rally.  We are asking Governor Cuomo to include at least 45 million dollars in the budget for an increase in pay for direct care workers throughout New York State.  Anderson parents were asked to bring a photo of our child, so I came with Jonah’s picture and cheered with the others when the Governor himself, in a rare personal appearance, came out to address the crowd and promise he wouldn’t sign the budget without the requested money in it.

Direct care workers deserve fair pay – excellent pay, even – for they protect, feed, clean, play with, and comfort our kids.  They deal with all manner of random issues working with them – things that are frightening, or gross, or just plain exhausting.

I was proud and honored to be a part of this effort on their behalf.

P.S.  Yes, I changed the name of the blog.  It feels right to do it now, and I like it better.  Until next time…

Jonah and I say thank you to all caregivers everywhere – and Happy Spring to you all!

Read Full Post »

Jonah’s 15th birthday was Tuesday, March 7th.  He did really well at school – they had a little party for him, he had a big ice cream cake at his residence, and in general he’s been better behaviorally again.  I’ve been depressed, and off-the-charts anxious, and am figuring out new doctors and medications – hence my infrequent blog posts.  I don’t want to complain and rave about myself but I’ve been isolating from people and sleeping too much, struggling to wait for the springtime, hoping it brings me peace with its sunshine and warmth.  I am grateful I have a good job working for an organization that helps empower disabled people, which is kind of perfect for me.

One thing Andy and I have to do now is begin the process of identifying our hopes and goals for Jonah’s future, including adult placement options.  It’s overwhelming to consider – seems every time I get accustomed to one part of this journey, another comes along and sweeps the rug right from under my already unsteady legs.  I have a name and number to call and get us started.  They recommend beginning the process at age 15, even though individuals at the Anderson Center for Autism do not “age out” until they turn 21.  There’s a lot to it – we need to get things in place with social services, disability, ensuring we have guardianship, setting up a special needs trust, and more.  And under this new administration I feel Jonah is less protected, his services jeopardized.

I hope I’m wrong.

I’ll be back as I can with updates, and photos, and to share more than I am able to lately.

Happy Birthday, Boo!

 

Read Full Post »

For a while I was a mother, the way other mothers are.

For nine and a half years.  I remember it.

I remember watching Jonah sleep, changing his diapers, helping him get ready for school, taking him to the park and home for dinner.  There were birthday parties here with family gatherings in our finished basement.  We played in the baby pool and Andy took us sledding.   I also remember how hard it was, how fucking frightening and relentlessly backbreaking our days became toward the end – and I sit here grateful for the stillness in which to type these words, I do.

But at the same time I feel a vicious, raging kind of helpless. When I get home from visiting my son, I’m angry.  I want to scream and moan and rave.  I slam my vacuum around the house, cleaning things just to feel some control over my environment.

There are things to say but I don’t want to say them, so I stay off the blog.  I don’t have any funny or engaging stories.   And when I read over these blog entries I make myself sick with all the whining and the wretchedness.  I wish I had better news, some anecdote to share.  I only have what I have, and I can only feel how it feels.

Things were looking pretty good on October 1 – they made Jonah Student of the Month, even, and his name and photo were on display in the front of the school.  I took a picture of the display case when I visited on Open House day, but I can’t find it now.  The school sent a certificate and a letter about how well he had been doing.  It was all really encouraging and cool.

They forgot to knock on wood when they said it, though, because it’s been all downhill from there.

Our visits with Jonah are worse.  I used to complain – recently, even – when he’d come running into Andy’s apartment and then just stand in front of the refrigerator, asking for whatever he felt like eating and scarfing it down before next asking for car ride.  Now car ride is all there is, and by that I mean we pick Jonah up at his residence and he says “no apahmen” and “no lunch” – and while my mom waits behind with whatever food she’s brought us for lunch, we drive the same loop over and over.

The best we can do to facilitate some sort of visit with my mother is to stop back at the apartment after every loop and try to bribe Boo to come inside.  Not bath nor Burger King is temptation enough – and forcing him would mean a huge aggression episode the likes of which none of us are willing to cause or endure.  And so we pause in the driveway and my mother comes out.  Sometimes Jonah will put the window down and we will prompt him to wave or say “Hi, Grandma” or parrot back whatever script we want my mother to hear.  Wish she could hear.  Thank you, grandma.  Thank you for ritually packing us all fresh sandwiches, chips and drinks every week.  Thank you for picking up mama to drive an hour and a half each way to sit in an empty apartment, visiting with me through a car window for a minute or two, because you love me so much you’ll do whatever you have to just to see me, hoping I’ll be happy or will want a kiss.

On Thanksgiving, Andy drove Jonah up to my mom’s house, just like he’s done every year for the past 6 Thanksgivings since Jonah’s been at Anderson.  Always Jonah loves grandma’s house.  He jumps out of the car and runs in, bursting through the door to pace around and survey his surroundings.

But not this year.  Even after that long car ride up here, he wouldn’t get out of the car.  My father arrived just as I was getting into Andy’s car to take Jonah for a ride to see train.  We called out the window that we’d be back, and my dad went inside to wait for us.  Jonah smiled, a big smile, when two trains came by, once we got to the Voorheesville tracks – but when we drove back to the house, Jonah still refused to come inside.  No grandma.  More car ride.  Awkwardly we all stood in the driveway, my father, my mother, and me – speaking to Jonah in turns and making sure Andy had all his Thanksgiving food my mother had prepared in Tupperware containers.

Andy and Jonah drove away, and my parents and I went back inside.  My mother and father tried valiantly to keep some conversation and normalcy in the day,  but I just sat there silent and crying, the tears coming against my will, hot and unchecked.  After just a short while I apologized and told them I couldn’t do it, I had to leave.  I drove home to eat my own portion of yummy Thanksgiving food and then, exhausted and sad, crawled into bed.

My mom and I didn’t drive down to see Boo again until today.  Again, Jonah just wanted car ride – only this time he got really sad and started crying as well – huge, gasping sobs.  I turned in my seat, gave him a clean blue t-shirt rag for his face, and held his hand in mine.  He didn’t resist.  He felt along the length of my hand with both of his, grasping my fingers, crying in earnest.

img_20161204_100622204

I asked him to tell me what was wrong.  I asked him several times, in all different ways, hoping he’d offer a clue.  Was he in pain?  He never tells us when he is hurting, but he’d just had yet another laser operation a few days ago, to alleviate the pressure in his left eye.  It shouldn’t be hurting him today.  And he seemed fine when he first came out of his residence on the campus.

And so he wept, and I just held his hand.  Andy played some of his favorite music, and eventually Jonah calmed down enough to gently push my hand away and request Tom Pah-dee (Tom Petty), Public Enemy, and Prince, in that order.

After three trips and visits back to the apartment where grandma came out and said hello, I finally got out of the car, kissed Boo, and waved goodbye.  My mom and I drove home, mostly in silence, feeling how completely surreal can fill a car like heavy smoke.

What more can be taken away? Even as I ask myself the question I hear the answer. What if, one day, Jonah refuses to leave his residence for our visit?  What then?  They don’t allow visiting in the houses.  There’s a visitor’s center on campus with mock apartment set-ups that seem really nice – but Jonah’s never wanted to go there.  We tried it once and it was a disaster.  And anyway, even when he was going to the park or down to the dock, he still wanted his car ride and to get off campus first.  Can we visit him on one of the campus playgrounds?

Tomorrow I talk to the school district about the possibility of Jonah attending the Kennedy Krieger Institute for their short-term impatient program.  And I probably will call Jonah’s caseworker, too, about how home visits have been deteriorating.

Maybe they will have some ideas.  Me, I’m fresh out.  And done writing about it, for now.  If I do not post again before Christmas, I wish you all happy and blessed holidays, filled with joy and hope.

Read Full Post »

On Tuesday, Jonah was taken back to the hospital, this time not only because of severe behaviors but also because he seemed to be struggling to poop and he looked pale and acted really lethargic.  When they called me, I decided to drive down.  I left work around 11am and when I got to the hospital in Poughkeepsie, Jonah was asleep under the covers with a pillow over his head.  All I could see of him were his sneakers, still on his feet, at the bottom of the bed.  He has three teachers in his classroom of 5, and one of them was there with him.

They had taken an x-ray of Jonah’s tummy and found impacted poop, so they woke him up and we coaxed him into drinking a seltzer-like laxative.  He was all sweaty from lying in his clothing under the covers and he looked at me in amazement.  “Car ride,” he croaked, more a statement than a question.  His teacher was awesome with him, helping to keep him calm and telling me how loved Jonah was at Anderson.  “I’m not just telling you that because you’re his mother,” he assured me.  Poor Boo was bored and confused, but after another hour or so he finally pooped and they let him go back to the residence.  I drove home in a daze.  Before I reached the house my car started to shake.  I couldn’t get the hood open to look at it, so I dropped it off at the shop.  Turns out they had to break it open to get in the car.  It was some crappy icing on my shitty cake.

Yesterday his main classroom teacher e-mailed me and was so kind.  She asked what she could do to help and if I had any questions, and she said Jonah had a good morning (and included two pictures to show me).  I am appreciative.  I am grateful.  I love that Jonah has teachers, specialists, therapists, direct care providers, and other workers who watch over him with such compassion and caring.  Were it not for all of them I could not do this at all.

Got the car back last night, and this morning Anderson held a meeting about Jonah with his behavioral specialist, his psych doctor, teachers, and nurse.  They called me to join the meeting and told me he was on his way back to the hospital for another psych evaluation after 12+ severe aggression incidents this morning.  And so this is hospital visit #3 since Monday, and it’s beginning to feel an awful lot like this time last year.

This doctor is a new one, and she asked me if I thought Jonah might be bi-polar.  “I tend to think there’s a co-morbidity with something,” I answered, “whether it be mental illness or seizure activity.  Something is going on.  There is never an antecedent.  You’ve charted every possible thing from bowel movements to times he eats and sleeps, for five years straight. There is no discernible pattern. ”

Her answer, as it has been before, is to raise his level of medication (Clozaril) while adding a prn of Klonopin  (as needed).  She suggested the possibility of adding Lithium, but doesn’t want to do that right away.

I have read (and I really appreciate) all your comments and well wishes.  I will try to come back to FB and re-join the Extreme Parents group so I can gather info and exchange ideas with other parents who’ve had experience with Kennedy Krieger and severe autism with aggression.  Andy and I are working through disagreements about what to do here.  Sending Jonah to KK would be a huge thing.  Just the thought of transporting him there is a seemingly insurmountable obstacle.  We want to make sure we are doing what is best for Jonah, both in the short and the long run.

I don’t want to go through what we did last year again. But it looks like that’s what’s fucking happening and once again we find ourselves in the frustrating position of having exhausted all ideas and resources.

When I reach out to the “experts” I find and they start asking me things like “What are the specific behaviors and when do they most likely occur?” I want to bang my head against the wall – not because I do not appreciate the attempt to help us but because people never get how far beyond the beyond we are at this point – how we are breaking new ground with this child and his behavioral (and physical) health.

How we’ve already tried that.  And yes, we’ve already looked at that.  And then there is silence, because nobody can chart us a path through this kind of journey, once they realize we truly are in a territory they have neither seen nor can understand.

We have to do it ourselves, and it’s scaring me to death.

I have been going to work and coming home and going to bed.  It’s like I’m a device on low battery that you’ve got to use as little as possible to preserve its life.  I am angry and I feel helpless.  I’m shaky and sad and frustrated and pissy.  I’ve been depressed lately anyway – I usually am this time of year – and I’ve thought that Jonah’s behavioral crises at the same time last year and this year might be something seasonal.  But mostly I’m staving off panic, a deep and unwavering fear.  There is no afraid of.  There is only the being afraid and the trying not to be afraid.

A waking life of fighting the fear, and a grateful yielding to sleep.

Read Full Post »

the blue shirt rag

Yesterday Jonah played the blue shirt rag; that is to say he blubbered into two rags, one after another, both made from Andy’s blue t-shirts irreparably torn in an aggression.   There are plenty of t-shirt rags as Andy has sacrificed many, many shirts in Jonah’s attempt to turn them, one by one, into Incredible Hulk Halloween costumes.

And Jonah nearly often requests Andy change his shirt.  “Blue shirt?” he demand-requests, leading his father to the bedroom dresser t-shirt drawer and rummaging through to find something blue.  Always he wants daddy in a blue t-shirt, never any other color – though what passes for blue, some days, is more like grey or faded green.  Daddy only has so many shirts to destroy, and only so many of those are blue.

As a result, poor Andy gets a lot of t-shirts for his birthday (coming up soon!) and Christmas and Father’s Day, all destined to be worn and ripped in relatively short order.

So yesterday, yeah.  The blue shirt rag.   In what I considered a behavioral triumph, Jonah worked himself into a frenzy on his car ride, crying out “no school tomoww-ow!” over and over until he was a slobbery snotty mess.

Andy pulled over quietly and handed him blue rag one while I filmed a bit of the scene.  I call it a behavioral triumph because Boo only kicked twice, and half-heartedly at that, before indulging in a crying jag instead.  Poor kid.  But he worked it out, God bless him, despite a great mess of snot and tears.  Andy and I mostly sat quietly, waiting, until there were long enough pauses between the wails to insert a calming word or two.

After deeming blue rag one full to capacity, Andy whisked it away, handing Jonah blue rag two. 

IMG_20160814_103545768

So emo.

“Here,” he says, making as if to hand me blue rag one.  I stare at the goobery glob of it and we laugh.  Jonah gets his shit together in the back seat with blue rag two and Andy tosses blue rag one to the floor. 

After this Jonah is fine, as if he needed to purge the sad, sad notion of school tomorrow before getting on with his day.  After all, who among us can truly say they have not ever dreaded school tomorrow?

Thank you, peeps, for the rallying cries that leave me strengthened and fortified.  Like Wheaties.  And O, Harlow, how you do go on.  I hear you.  Who’ll stop the rain indeed?

I appreciate it all.

Read Full Post »

In five days, on August 16, it will be the fifth anniversary of Jonah’s departure from home.

That’s more than a third of his innocent little life, and I sit here and type this through a stormy mess of emotions.

For some reason that one comment from the other day echoes in my head, over and over.   I can’t be bothered to parent.   I can’t be bothered to parent.   I can say “haters gonna hate” and try to brush it off, but the troll’s words have gotten inside me, wringing my heart, making it pound pound pound in my throat.  I kicked my son out.  I can’t be bothered to parent.  The words are not true and I want to stop hearing them but I don’t know how.  I heavily edited my “about” page to more clearly define why we had to send Jonah away, and even as I wrote the new copy I asked myself why I felt the need to justify our actions.

There are many answers to that but the most important answer, I suppose, is to educate.  The idea of residential care for individuals with autism is repellent, and I get that.  It’s important to know the why of it all, lest they judge not only me but all others in my situation, lest they misunderstand the reality of residential care in the 21st century.  Jonah’s school is not an “institution” – it’s a huge, gated, beautiful campus with individual houses and a school building.  The caregivers and teachers are phenomenal; they are Jonah’s best friends and companions, advocates and educators.  These aren’t justifications.  I do not need to justify what was not our choice.  We didn’t choose this.

Parents who place a child in residential care aren’t throwing their kid away, I assure you.  Because guess what?  Even if there were parents who wanted to “throw a child away,” the openings at these places are so valuable there wouldn’t be availability unless the child’s home school district deemed it absolutely necessary.  The school district pays for it (in New York State, anyway) and moneycoin is, of course, a huge determining factor.

I just wish I wasn’t so hypersensitive. Or maybe it’s not that.  Maybe I’ve slowly developed an invisible shield in order to move forward through life and when trolls knock, the shield is shaken, endangered, a hole poked through, the feelings rushing in, too many too much too painful too real.   All the feelings I usually suppress.  Ignore.  Internalize – until I am, as I’ve described before, bow-string tight with bones gone brittle, shoulders hitched up, breath after breath after breath held…suspended…each new breath a hesitant, unwilling step into more future.

For five years I have lived this bizarre life of mother-not-mothering.  For five years I’ve spent most of my energy running away from how it feels never to watch Jonah sleep…how it feels never to be there when he awakens….never to know what it is to raise him.  It’s the most helpless kind of helpless.  I suppose my mind has created its own protective pathway to enable me to live this way.  I imagine my heart’s new primary purpose is to forget all the days we spent together, and what it was to shape his Self, and how I fell in love with his role in my life as my Boo.

I don’t know anyone who is in my situation, with their only child living in a residential school for autism, except Andy.  But we don’t talk about it, and so that most helpless kind of helpless is a lonely kind as well.  From a singular perspective I attempt to tell our tale, and like as not I speak a language so foreign it’s lost, dismissed, or plain old misunderstood by some people.

And just like that I’m off to find the Animals song, link to it, and look up the lyrics.  Is it schizophrenic thinking to feel how those lyrics apply to me?  To type the words out in paragraph form because I identify?

I only know this diversion serves as vacation from all the other crap I’m always on about.

“Sometimes I feel a little mad.  But don’t you know that no one alive can always be an angel?  When things go wrong I seem to be bad, but I’m just a soul whose intentions are good.  Sometimes I’m so carefree, with a joy that’s hard to hide, and sometimes it seems that all I have to do is worry, then you’re bound to see my other side.  But I’m just a soul whose intentions are good; oh Lord, please don’t let me be misunderstood.”

Why care if I’m misunderstood?  Why react so viscerally to the critic or the cruel?

Either way, I’ve been hibernating and closed off.  My mental energy is always working to stave off thinking things I don’t want to think.  I sleep and I sleep.  One day this week I came home from work and took a nap, only waking to eat before going to bed for the night.  I’m making up for those sleepless nights with Boo, back when I was a mothering-mother.

Jonah’s school called me today to join a conference call and approve a proposed increase in his dosage of Clozaril, since the drug is helping lessen the frequency of his aggressions but it’s not taking them away.  We talked about how he’s refusing to go to school (though they always get him there by 10am or so) and then I asked if anyone there had seen Jonah today.  One person had, in the classroom, and she described how he was making a great racket of noise.  He also had a behavior management at his residence this morning.  They didn’t disclose the severity of the behavior and I didn’t ask.

It’s difficult to remember a time when I did not embrace ignorance.

I guess maybe, well, five years ago.

This is another one of those blog entries I nearly almost always type with fingers slamming-hammer-quick on the keys, stream of conscious unthinking – and then delete.  But I think I’ll publish this one.

If I go away for another while, however long, I wanted to tell why.

Read Full Post »

Some of the people at the Anderson Center for Autism will email me every so often to check in and see if I have any questions or concerns.  More often than not, I’ll answer with just a brief note of appreciation, but sometimes I will ask a question or express a concern.

This past week was one of those times.  When one of Jonah’s behavior specialists emailed me, I directed the inquiring behavioral specialist to my broken post, explaining that I’d been depressed about Jonah’s seeming stagnation and asking for glimpses into Jonah’s life and happiness.  She emailed me back and asked if I wanted to talk.  We scheduled a time, and she called me.

I wonder if every parent she calls must force words past a throat tight from trying not to cry.  It seems I am always crying on the phone to the Anderson folk.  Hell, I don’t think they’ve ever heard my normal voice.  Anyway, we spoke, and she was kind, and said she saw a lot of hope for Jonah.  She told me he had, just that day, approached a new student in class who was sitting on a beanbag.  Jonah sat right down next to him, smiled, and was calm.

This behavior specialist knew I needed her to tell me something good.  And she kept on knowing it.  The next day, she sent me this email:

Hi,

I just wanted to send you a quick note.

Jonah went swimming with his classroom peers today!  He sat the edge splashing and playing for about 10 minutes before he walked to the deep end and finally jumped/dove in!  He swam to the stairs, got out, dove in, again and again!

He was laughing and enjoying himself!  Staff said the last few days at school have been really positive!

Best,

R

I felt the excitement of those exclamation marks.  Easily I pictured Jonah’s lithe form, diving effortlessly and gliding far under the surface of the water to pop up right at the ladder.  I sent R a thank you that could never hope to express how much the email meant to me.

Sometimes I feel envious of the people who get to witness Jonah’s joys firsthand.  I get so few glimpses of him that I over-record him when I see him and then watch the short videos over and over, as if to memorize his smiles and laughter.  It’s a strange thing to know that a whole group of other people have way, way, more interaction with my son than I do; a myriad of mundane activities are supervised and guided by his Anderson “family,”  for the past almost-five-years.  But all that time has trained my mind to accept this strange mother-not-mothering existence.

They’ve raised Boo’s dosage of Clozaril by a very little bit, and so maybe that’s the reason for his recent positive days.  For all I know, as I type this Jonah is mid-attack, biting and kicking and hitting.  But for now, today, I will read R’s email again and stay in that place and those moments, enjoying his time at the pool.  It’s a good place to stay; as transient and fleeting as it may be, it happened, and no one can force me to focus my gaze and thoughts elsewhere until I’m good and ready.  Even the email in my inbox (the one always from the same person, always to notify me of an incident of aggression) can sit there unopened for as long as I like.  I do not have to move on from Jonah’s swimming pool fun and nothing can make me move on from it.

Tomorrow I may be ready once again for the roller coaster.  Today I’m sitting on the bench and letting other people ride.

Read Full Post »

Older Posts »

%d bloggers like this: