Posts Tagged ‘iritis’

boo riddle-y

Not writing here feels like holding my breath.

Jonah has been largely aggression-free for a while now.  I say “a while” because I don’t think of time in terms of hours days and years anymore….at least not in the way I used to.  Boo’s every moment is a possibility; his focus flits and alights in bat-like erratic patterns of flight.  He soars and crashes.  Sometimes, when he is soaring, I feel a superstition of sorts – as if not writing about him will protect him from the pendulum’s swing.

Boo ridlle-y.  On Saturday he laughed and spun, ate well, sang a little, watched train-on-TV, and rode happily in the car, rocking to his tunes (he enjoys Emancipation, daddy’s double album CD by Prince right now) and making funny, silly, happy faces:





All I want is his happiness.  That’s really ,when you get right down to it, all I want.

I am grateful for it.  I take pictures of his happiness, over and over, to remind me it is there even when I cannot see it.  I am grateful today for so very many things.  Boo’s school & caregivers.  His daddy.

For the fact that I woke up free of pain and able to breathe and see and walk and write.  For the incredible freedom of working from home – to be able to write and make a good living of it.

And I am grateful for Boo’s right eye, for we were all wrong about the left.  He’s nearly blind in it — maybe he can see shapes but that’s about it.  He had cheated on the other test.  In almost every picture of him now you can tell his left eye isn’t quite right.  The amazing thing is Jonah seems not to mind so much.  I think maybe this is yet another blessing for those on the more severe side of autism:  Maybe these individuals have no expectations from life.  They just live it and react accordingly to stimuli, perhaps even instinctually, in whatever way they can in order to move through what must seem a very foreign world.  There is joy for them here, and there is sorrow, but it is not the same as ours and never will be.  Theirs is a pure innocence and a soul unsullied by envy, shame, jealousy, guilt, bitterness… so many wonderful things to be without.

I think maybe I need to try harder look at things from Boo’s perspective – to watch and listen and tune-in to him more, instead of being so reactive (something I’m almost body-trained to be from his aggressions).

I am looking forward to Saturday.  My hope is relentless, week after week, in the face of any possibility imaginable.  If that is the definition of crazy then there it is.  I can be that kind of crazy.  I can be anything I need to.  I am pliable, lithe.

Thank you is my prayer today.

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Those of you who can find the thread in the midst of all my tangents and ramblings may be wondering what is happening with Jonah’s eyes.

Two or three blog posts ago (the eyes have it) I said:

“What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him…all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions.   He’s going to help us get to the bottom of all this.  He’s my ace in the hole.”

Luckily, before I needed to ‘play my ace,’ the doctors decided to talk to one another.  For now we’ve all come to the conclusion that the Reticert implant is best left in place for now, even though the thing is nearing the end of its efficacy anyway. 

Plus now there is all this concern about the “activity” in his right eye.  The new drops have mitigated it so far, we’re told.

Next we’ll go back to the pediatric rheumatology doc and find out about another drug she may want to try.  I like her; she’s cool, knowledgeable, and kind with Jonah.

Still, I feel like we’ll never get to the bottom of so many things.  But maybe that’s all right.  It has to be all right.  I don’t have any choice but to learn what I can comprehend and weigh options with Jonah’s dad and all the endless scads of doctors. 

It’s like looking at my boy through the water, all refracted by light and liquid.

Boo likes to be underwater

Jonah likes deep pools best where he can swim to the bottom and ‘merboy’-himself along as if finned. 

At the bottom of all this is Boo.  It’s always been Boo.  Like Mitch Albom, Jonah tells his mama:  We’re not a wave.  We’re part of the ocean. 

But whales live in the ocean, Boo.  Ones that swallow Jonahs who’ve been insubordinate. 

“…(and) you can’t hide; standing under these stars
They know everything… they know where you are.
You’re in your head, you’re all turned around with it
And they’re shining down their light to bring you back again

~ Careful by Guster

So soon we will know more, about both Boo’s eyes, and maybe try harder to get him to wear sunglasses for his light-sensitivity.  And I keep files and notes during doc-conversations so I don’t forget details.  If I cannot parent him I can advocate for him.  And others like him. 

I miss him so much tonight, though.  Usually I don’t let myself think about it, about him not being with me.  But sometimes because of a scent or a sound, all at once I have a punched-in-the-gut feeling, and I miss him like the day we dropped him off.  My God, it’s been almost a year. 

He has made a lot of progress.  He is toilet trained nearly completely and his language and social skills are coming along.  You can ask him a question now and usually he’ll answer it. 

“How is your sandwich, Jonah?”


It used to be more like:

“How is your sandwich, Jonah?”

“How is your sandwich, Jonah?”

And still he parrots, but he can make his needs met and now he will initiate conversation.  He says hello to teachers and the nurses, and his caregivers too.  Now he is so much better at communication.

shoes on please?

He’s independent, too.  His life has routine, and ritual, and he’s surrounded by people who know how to teach kids like him.  I don’t know what I’m on about.

Off I go to breathe and eat.

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Since he’s been on Atavan, Jonah’s had long periods of drowsiness punctuated by his personality shining through, complete with talk of train and moneycoin.  (Was there a time when I actually was exasperated by his innocuous obsessions?)

Two doctors today – the eye doc, and Jonah’s first visit with a child psychiatrist.  The good news is that the eye doc said the pressure in his left eye was much lower and better, though they had to come out to the waiting room to give Jonah the eye pressure test.  Jonah had flipped out, attacking Andy, and Andy restrained him in a waiting room chair so they could get a quick pressure read.  Then Andy and Jonah left, and I stayed behind to talk to the doc.

After that they picked me up and we went home to wait for our next appointment.  Jonah seemed confused, first asking for one thing and then another.  “Museum?”  he asked.  “Toon-fish-sanwich?”  He remembers that when we go to the museum, we usually stop at Subway for a tuna fish sandwich.  He rotated through the list of things he wanted and then settled on bath.  After a few minutes in the bath, he attacked me, and Andy held him in his room until we could calm him down.  He’s on all three of his meds at this point and I’m thinking why are the meds simultaneously doping him and not really mitigating the aggression?

Finally we calmed him, mimicking taking deep breaths (let it out through a straw, bunny, breathe deep through your nose) and talking him into another car ride to the psych doc, where the social worker from Wildwood met us.  Jonah had an aggression in the waiting room and then another almost as soon as he went in to the doc’s office.  Andy ended up taking him out to the car while I spoke to the doc – which turns out to have not been the most ideal plan, as necessary as it seemed at the time, because the doc’s got to interact with Jonah.  So I spoke at length with the doc about Jonah; I asked a ton of questions, he suggested both Jonah and I likely had post traumatic stress disorder (which I always thought was for war-scarred soldiers and natural disaster survivors; when I asked what they did for that, he told me generally, not much), he doubled the dose of Jonah’s Risperdal while weaning off the Clonodine and warning us to use the Atavan sparingly, and we made another appointment in 3 weeks.

Before I left, though, I learned a hard lesson or two.  One is about judgment.  For instance, Andy and I had always been anti-meds – but for us that was like being 22 and saying you’ll never dye your hair – easy to say at 22 because you haven’t got any greys.   We never needed to medicate Jonah, so it was easy for us to be anti-med; Jonah clearly had autism but we thought we had done all the “right” things – early intervention, a variety of therapies, specialized schooling, etc. and so he was doing well…until the aggressions began.  Then we were no longer 22 year olds with nary a grey hair — we were rapidly aging, fast-greying, hair-dyeing champions.  I don’t mean to imply that we’ve suddenly become pro-medication, but it’s certainly become something we needed desperately – at least temporarily – in order to stop what was happening.  As a result, I’ve ceased judging others’ decisions about pretty much anything.  What works for one will not work for all, and that’s just the way it is.  We clearly have to try and try and try until we find the right mix of therapies and medications and whatever else until we have our lively, happy little boy back.

“Have you seen this kind of thing before?” I asked the doc naively after relating some of the more violent incidents.  He nodded in that deliberately-patient way you do when someone asks an incredibly innocent question.  “All the time,” he answered.  He told me two or three stories of parents beaten badly by their children before the families could get help – of situations far worse than ours.  When I asked what is done for these people in emergencies, he said unfortunately, not much.  When I asked why nobody could help us, he told me the system is essentially broken.

Then I stopped asking.

Andy had gone home with Jonah so K from Wildwood generously offered me a ride home. I thought a lot today about how there doesn’t seem to be any clear plan to fix any of these broken things.

How dangerous a position so many people are in.

How somebody needs to do something so there is a place for people in unquestionably dangerous emergency situations – a facility to immediately accommodate children who are non-verbal, or violent, or mentally ill, whether or not they are toilet trained, or have a high enough IQ, or are the right age, or carry the right insurance.

How I should become an advocate for better care, once the smoke clears on my own mess.

How, as frustrated and passionate as I am about this, there realistically is little hope of me making any difference.

It’s also beginning to look more and more like residential educational placement is the best option for Jonah, with the goal of getting him back home as soon as possible.  The reality is still far enough away to be an abstraction in my mind, though it is beginning to enter my consciousness in a way that feels like 90% horror and 10% relief.

That’s assuming there is a place for him, and Wildwood can present a strong case to the school district for its necessity.  I used to think we had the strongest case on the planet; now I know they’ve probably seen it all.   But the folks at Wildwood are stating that the quality of Jonah’s education, where once excellent, has deteriorated into basic behavior management and sensory input (riding him around on a scooter with a weighted blanket on it) with very little participation on Jonah’s part.  I don’t want that for my child.  I want him to enjoy activities and benefit from academics, play and sing and do all the things he did such a short time ago.   We’ll try the different dosages and hope for the best outcome, so we can keep him home where I want him.

I want Jonah to shine.

If that means we need to place him in a facility, then I best start coming to terms with that.  God help me come to terms with it.  I don’t know if I can.  Maybe I can.

But not today.

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