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Posts Tagged ‘Dr. Naomi Falk’

On Thursday the 7th, I took time off work for Jonah’s quarterly glaucoma doc appointment.  Two Med Run Peeps drive him the 90 minutes up to Albany every time in the Anderson van; Jonah rides in the way way back, transported like His Majesty the Prince of Rhinebeck.  I was very much looking forward to seeing him.  It has been a long, long stretch of time since Boo has had an aggression.  Since maybe October.  I was hopeful he’d be glad to see me.

The stars were aligned this day.  It was Laura Ingalls Wilder’s 152nd birthday, the Med Run Peeps were being their awesome, caring, kind selves, and Jonah was cooperative and happy.  Silly and funny.  Amazingly good.

Even more so when you consider that, unlike most visits to this doc, we had to wait a while; they wanted to take a scan of Jonah’s eyes before he saw his regular doctor.  So we moved to an empty area of the waiting room, where geriatrics henceforth feared to tread – though those with vision watched us curiously and not unkindly.  Jonah laughed his brash, loud laugh, pacing up and down the row of empty chairs.  He hugged me and asked for more kiss? again and again.

My son is nearly a man.  In a photo, he sometimes looks like a regular kid who is 16-going-on-17.

In person, though, there is no mistaking him for a “normal” teenager.  His disability is as visible as if he were in a wheelchair, and to be honest I don’t mind that.  In general, people are more compassionate now.  When Jonah was very young – until he was 10 or 12, really, this was rarely the case.

Back then, to some, Andy and I were bad parents of an out-of-control kid.  Once, an autism-denier went so far as to comment that I should give him Jonah for a week and he’d “straighten him out.”  (I think his comment is still on that long-ago post).  I remember how tempting it was to let him try… just to sit back and watch Boo kick his ass.   If there is anything from those darkest days I miss, it’s the secret evil pleasure of watching Jonah attack a smug doctor who’d ignored my earnest warnings of severe aggression.

I talk about the pendulum swinging: aggressions and respite, hope and despair – our cyclic existence with no real patterns upon which to prepare for the next “season.”

Dare I pretend
to hope
to believe
Jonah’s aggressions have disappeared altogether?

Since autumn of 2010, I don’t think he’s ever gone this long without aggressing in some way against someone.  He still gets squirrely, and he’ll swat or “flinch,” as the school calls it, motioning his hand in a warning.  It’s the rattle of the snake, and yet nothing comes of it anymore.  Now it is an end unto itself.

His awesome teacher Sophia wrote me yesterday that he had zero flinches this week.  Not just zero aggressions. Zero flinches.  My hero zero.

I’m proud of my son.  I think he’s worked hard with the wonderful teachers & caregivers to learn how to manage his feelings.  Fred (Mr.) Rogers said he wanted to teach children that feelings are mention-able and manageable.  It may well be one of the most important lessons a person can learn.

The rest of Sophia’s email to me reads:  “This week we learned more about coins and bills, we celebrated the Chinese New Year, the Phases of the Moon, we did an experiment with Oreos to show the phases.  Jonah enjoyed the part where he got to eat the cookies!  We made a banana sushi roll today during Group OT and we also enjoyed a nice walk outside!”

I was so happy to hear about his week and know he spends time learning in ways that are fun and comfortable for him.  When he first arrives at the classroom, he gets under a beanbag chair and blanket for a while.  They recognize he needs to start his day this way and I appreciate that.

And so Jonah is well, and happy.

The rest of this post involves another disappearance – so if you’re here just for Jonah news, all done. 

Every day when I get home and don’t have to go out again, it is my custom to take off my winter ‘office work boots’ I wear nearly every day and place them next to the radiator in my bedroom.  So on that same day – Thursday, February 7, I came home from Jonah’s appointment and put the boots where I always put them.

That night I woke up at 1am mid-migraine, head pounding hard.  I immediately got out of bed and took the med that stops my migraines about 50% of the time.  Then I stumbled into the bathroom and, without turning on the terrible light which has become my nemesis, found a washcloth and ran very cold water over it.  I returned to bed and nearly started crying in despair for what I knew was likely coming:  the 24-36 hour marathon of puking, even the tiniest sip of water rejected; dehydration and retching causing my head pounding to worsen and the head pounding causing nausea, on and on in a nightmarish underworld where there is only pain and the desperate desire not to be in pain.  In those first minutes lying down with the cool cloth, I prayed.  I prayed the fervent, frantic prayer of one willing and ready to strike a deal with Divinity.  Please, please, let this migraine subside and I’ll do anything.  You can take anything from me. Just make it stop.

And lo, on this day in the year of our Lord twenty nineteen, the migraine stopped, blessedly subsiding into nothing – the pain retreating as if ordered to cease and desist.  I eased into unconsciousness before I could pray or even think my thanks.

The next day I awoke…

…and, as part of my every day morning routine, got dressed, reached for my boots…

And this is what I saw:

One boot.

I looked under the bed.  No boot.  In the closet.  No boot.  After a while I didn’t have time to look anymore so I found my old pair from last year and wore them instead, telling myself I’ll find the other one later.  After all, how hard can it be to find a knee-high boot?  Yes, I lost 3 books of holiday stamps after New Year’s, but those are stamps.  This is a freaking boot.

Only later that day did I realize I’d promised in my prayer the night before to give anything for the migraine to go away.

The only conclusion I can come to is God took my boot.

It is now the next day, Saturday, and my mother’s birthday (Happy Birthday Grandma, says Boo).  I have conducted a thorough search for the missing boot.  I have looked in ridiculous areas and places where no boot could ever hide.   As of this writing I have no explanation, and I’m trying not to think about it all too much, lest it freak me out completely.

If after my death I am deemed so wonderful as to be considered for sainthood, could this missing boot count as my required miracle?

The world may never know…but I’ll keep you posted if I find it.

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Got to see my Boo twice last week – on Friday for his JRA doc appointment, and the next day, down in Rhinebeck with my mom.

He was a pisser at his appointment —  but also a weird thing happened both then and again today.  When they first called Jonah in for height and weight, he got on the scale and stood pretty still.  The nurse said “84 pounds,” and I was shocked at how heavy he was.  I mean, he looks skinny and lithe like his mama.  “Wow,” I said.  “When I was 84 pounds, I was in junior high.  And I was skinny!”

Not thinking. 

Not remembering, were Jonah a “normal” boy, he would be in junior high.  He would be  entering 7th grade this year.  To me he is my very little boy, my baby-est angel.   It is so easy to regard him as such.  Like when we lie down together on Andy’s bed, one near each side, sometimes holding hands, and we stare into one another’s eyes – he often sucking his thumb, for “quiet time.”  I think I will always have quiet time with my Boo.  In so many ways he will stay very little.  Can I listen as the watch unwinds?

This is where I suppose I am blessed, for other parents must lament the speed with which their children learn and grow, whereas I may yearn for Jonah to stay small physically, but the learning part is comparatively like molasses, and the rest of him is a poorly engineered roller coaster ride.

No lamentations from us about too-speedy entry into higher schools, middle to junior high to high school, high school to college – all the kids’ birthday parties, little league games, soccer mom hoopla (some of which I’m not sorry I missed out on, truth be told).  All the PlayStation (?) games at $100 each, the must have clothes, proms and clubs and nightmares, worries lies anxiety want-to-fit-in rebellion wisdom questioning making friends.  Jonah won’t have any of that, and usually I feel like that’s okay.  Maybe it means I was supposed to be his mama.

Is autism really just an internal trade, pure innocence for societal functionality?

Today I picked up my new migraine meds at the pharmacy, and the all-time awesome-est pharmacist was there.  She has seen me through all kinds of drama and tears, and we’ve talked lots about Boo.  She asked about him today, and I said,  “He’s good.  He’s loving music.  His two current favorite bands are Prince and Public Enemy.  As loud as it will go,” I added, laughing.

“Well he sounds just like a teenager, that’s for sure,” she replied.

Yeah.  Teenagers like to play their music loud, don’t they?

Earth to Amy:  Jonah’s autism does not define him.  He is also (nearly) a teenager.

Breaking it down and taking it back to the doc appointment.   Took a while for the doc to come in, so Boo’s two caregivers (J and P) and I occupied him through his mischievous, shriek-y, giggling wait time.

OLYMPUS DIGITAL CAMERA

I brought a package of tic tacs and immediately Jonah held out his hand.  “I hold it?” he asks, when you’re trying to give him just a little bit of something, or dole it out.

Yo yo yo, big pimpin', spendin' G's

Yo yo yo, big pimpin’, spendin’ the G’s. He cares little for paper money, though they’ve been teaching the abstraction of it all at his school and he is learning.

For the doc appointments I comply and hand him the container.  “I want help please?” he asks, trying to open the small box.  I open it and hand it back.  Immediately he shakes it up and down and back and forth, scattering every last tic tac around the room and on the floor.

Now he lazily seeks out approximately 1/3 of the tic tacs he has just scattered and places them back into the box or lines them up in front of him.  Doc says he is fine and we may want to talk to his retina doc to see if it’s time to titrate him off the methotrexate, and eventually, hopefully, the Humira as well.  Both docs are women and I stand in awe of them, so grateful to all they have done for Boo, for their kindness, their intelligence — even strangely, their beauty — as I believe it rises in those full of love and doing good in this world.

Saturday was a forgot-my-camera day, which is sometimes okay.  I don’t always have to play photojournalist.  Jonah wanted to watch train on the computer, loud as all hell.  He asked for freight train and since pretty much any railfanner video out of Voorheesville is of freight train after freight train, I just gave him a 45 minute video of that.  It was a typical-good Jonah visit, complete with swim-up lunch bar and car ride to transfer station. 

When I gave him his bath I even got him to sing some Guster.  He knows Keep it Together best, so I’ll usually begin “When we all….” and then fade out and let him take over.  It’s pretty cool how well he sings, both (mostly) in tune and rhythmically.  Here’s the “famous” video of him singing it when he was 7, on a rare occasion when he allowed me to film him at all.

I’m tired.  Almost no sleep last night.  It felt as though time were traveling backward.

“Listen as the watch unwinds….”

(from Come Downstairs and Say Hello)

by Guster

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