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Archive for the ‘autism’ Category

my thanks giving

Posted in autism, Uncategorized, tagged on November 24, 2010| 4 Comments »

Because I have become afraid to be alone with Jonah (rational or not), I’ve called my dad to ask him to please help me pick him up from afterschool, give him a ride to the train (depending on how we was at school today), and help with his dinner, a bath, and getting him to bed.  Andy is working and M can’t help me tonight.  It’s the day before Thanksgiving, so the short supply ‘o’ sitters aren’t around.  Luckily my dad is more than willing to help, and we got out of work a little early today (thanks MKR), so I have a minute to type.

God only knows what four straight days with Jonah will be like.  I don’t have high hopes, and I know I’ll be back soon to complain about how Jonah threw the gravy boat all over grandma at the Thanksgiving dinner table, so I thought I’d write a giving of thanks to balance out all the bitching.

In no particular order, and of course leaving out a multitude of blessings, I am giving thanks:

…for the fact that I don’t have to wait in line at 4am on Black Friday for the toy my child absolutely must have, or worry about whether or not I can afford (or should spoil my child with) whatever latest game system, i-pad, blackberry, etc. a typical 8 year old yearns to own.  I needn’t fret over whether or not to tell my child there is (or isn’t) a Santa Claus.  I won’t be standing in a long queue of fidgety kids and weary parents to get my son’s picture taken with a store Santa.  I don’t have to hear Jonah cry because he got picked to be an ox in the Christmas Pageant instead of Saint Joseph or one of the Wise Men.

Instead, I can wake up on Christmas morning and give Jonah an assortment of things like bubbles, straws, and balloons, and he’ll be happy as a clam.

Of course, my mom will compensate for my blasphemous lack of gifts by turning her living room into a toy store and presenting Jonah with a new winter wardrobe, several electronic toys, expensive musical instruments, a portable dvd player, and whatever Elmo is singing about this year.

I am thankful for pretty much everyone reading this (with the possible exception of Marcia).  There’s so much else and so many more people.  It could go on forever.  I know!  I’ll use pictures.  I wish I had a photo on my computer of my dad, and a few others I’d like to include in the thank-you album.  But here’s a little pictorial of gratitude at any rate.

I am giving thanks for:

hawks (i always say they are my gina, coming to say hello).  and

bright blue color filled autumn days. and

the rensselaer falls, my favorite nature creation spot.  and

M, my true friend and partner in travel.  and

my joyful bunny bopper boo.  and

the opportunity to walk where laura ingalls wilder’s husband spent his boyhood.  and

the wondrous beauty and stillness of deer. and

my three cousin-sisters.  and

my mom.  and

sweet random playground kids.  and

my witty and wonderful dear friend dimma. and

flocks of birds in flight.  and

the ocean, and the way andy and jonah and i all love it.  and

barkley!  and

mx & p yo.  and

rainbows.  and

silly D. and

silly jonah.  and

deep watery vistas.  and

sweet little h.  and

guster in concert!  and

my salespeeps K & Mg & B. and

jack!  (named after laura ingalls wilder’s dog) and

little bunnies (is it fiver?)  and

jonah & his grandma jane.  and

work fun!  and

snuggle hugs.  and

d & e.  and

the best pizza in town.  and

KP & little H, all together for a gorgeous wedding day.  and

b and v and their awesome green wall.  and

wig day.  and

the magic of water…

This year I have done a lot of things, enjoyed the company of many people, seen much beauty, and given not nearly enough thanks.

Thanks.

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mangled – the perfect storm

Posted in autism, behavior, Uncategorized, tagged , , , , , , on November 23, 2010| 7 Comments »

It’s 7am and Jonah’s already attacked me – he asked for “train-a” (he’s been putting an “uh” sound on the end of a lot of his words lately) so I told him it was a school day but we could go to see the train after school.  This is a pretty standard conversation in our house so I didn’t expect it when he tore at my face, scratching me near the corner of my eye and mangling my glasses.  For the second time since I bought them on October 23rd, I’ll be at Lenscrafters today to get the glasses fixed.   I think I’m going to be their best customer.  Now the almost-brand-new glasses are really mangled – no matter how I try to push and pull them back into shape they sit crooked on my face.  I look and feel like a broken doll.

It’s “special persons day” at Jonah’s school which means both my mother and father will be there, and Jonah’s classroom is preparing a special Thanksgiving feast; I pray to God and little baby Jason that Jonah’s a good boy, at least for most of the time.

This past weekend Andy took care of Jonah (with help from my mom) while I went to NYC for an adoption conference for work.  Because I am adopted I especially enjoy talking to the prospective adoptive parents, agencies, and attorneys – I was an exhibitor at the conference because we facilitate adoption advertising, and because I did not have Jonah for a day and a half I enjoyed the guilty pleasure of freedom.  In addition to manning an exhibitor table, I was on a panel of parents who spoke about “raising a challenging child.”

All the other parents on the panel had adopted special needs kids – the kids had separation trauma, fetal alcohol syndrome, bipolar disorder, you name it.  One couple had actually adopted 15 kids (!), 3 of which they had to place in a home because of violent or out of control behaviors.  Jonah’s all I’ve got, and to place him is something so hard to comprehend that I’m wild to try everything/anything else we can, as quickly as we can, to seek another way.

Would I have deliberately adopted a special needs child?  My first reaction is to say hell no, but when I was pregnant I told God (naive little big-bellied me) that He could give me a disabled child or a gay child, that I would be okay with either.

My running joke now is that Jonah is probably both disabled and gay.

Someone I met on an autism group on Linked In sent me an obviously self-published book they wrote about their “journey home from autism” – and a children’s book they’d written as well.  Very kind, to send me the books for free, and I haven’t read them yet, but I’m going to use this as an opportunity to bitch that I’m tired of the whole Jenny McCarthy “you too can rescue your child from autism” schtick.    Most of the time I think these “rescued” children were mis-diagnosed in the first place.  I believe that 50 years from now it will be apparent that what we now call “the autism spectrum” is actually about 10 different things.  Jonah was unquestionably born with autism- our family physician noticed issues before he’d even had his first immunization, and in hindsight I can easily see how he was very different from neurotypical babies.  How can that be the same thing as the child who develops normally for however many months, gets a shot, and suddenly “falls off the planet,” losing all his or her social, verbal, and other developmental accomplishments?  It can’t. The symptoms might mimic each other but the underlying cause and condition isn’t the same.

If anyone had figured out a real, viable way to “rescue” these kids from autism, we’d all be on that fucking bandwagon, trust me.  But what works for one child doesn’t work for another, and the “here’s our amazing story of how we  pulled our precious child out of the bowels of the hell that is autism” books are a dime a dozen nowadays.  You can’t throw a stone at a bookstore without hitting something written by people who want to share the inspirational tale of tirelessly helping their child become “normal” again.

The parents of kids with autism don’t need to feel guilty about what the Superparents accomplished that for some unknown reason the rest of us haven’t been able to.  Since the market is flooded with these Superparent success stories, I think what parents need is for someone to write: this sucks, and I don’t know what to do either, and I’m trying hard, and I’m afraid, and I understand, and I’m in the same boat, in the same perfect storm.  I’m drowning too.

I understand.  I’m drowning too.

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houdini on pcp

Posted in autism, behavior, Wildwood, tagged , , , , , , on November 19, 2010| 1 Comment »

Yesterday I picked Jonah up from afterschool program with more than a little trepidation.  Wednesday, you’ll recall, was hell, and for no reason anyone could figure…aggression after attack, all day long and home as well.  Andy came over to help me; he was there to get Jonah out of the car (which was very cool, because I’d about had it) and he was there when Jonah attacked again a few minutes later.

When I woke up Thursday morning I thought: which kid is the universe is going to hand me today? I guess Jonah’s like a box of chocolates: you never know what you’re gonna get.

sweet angel boy, playing in the bath

I admit I was a kinda gun-shy on Thursday when I picked up little Taz. And I was on target this time.  They told me he’d been in attack mode the whole time, right from the get-go when he came off the bus kicking and hitting.  I thanked them, apologized, and managed to get Jonah in the car without incident. He was safely buckled into his new 5-point harness contraption, but halfway up the first street there was a disabled vehicle and it gummed up the works for about ten minutes before we could get around it.  I guess he got impatient.  For whatever the reason, he started kicking the console, hard.  Bam BAM BAM BAM BAM, the whole time trying to reach me, stretching his body as far low and long as he could.  BAM BAM BAM BAM BAM until I thought he’d break his foot.  “No!” I yelled back at him, the traffic moving now, me dividing my attention between the road and my rising panic:

I’m in a horror movie and there’s a wild creature in the back seat about to escape his bindings.  I hear the unmistakable clicks of Jonah unbuckling the harness buckles, squirming around frantically to get at me: Houdini on PCP.  I’m having visions of Damien Thorn scratching and clawing at his mother’s face in the movie The Omen – and I’m approaching the intersection but Jonah’s succeeding, he’s getting loose, and the kicks are closer – BAM BAM BAM BAM – and I’m pulling my car seat as far forward as it’ll go, smushed into the steering wheel, thinking he’s going to get us killed, and all the while I’m yelling “No!  Jonah, NO!  STOP IT!”  at top volume.  I’m clawing around for my cell phone and I call Andy – thank God he was at the house – to tell him please be outside when we get there, ready to help me.

Then I turn down Euclid, round the pond, and we’re in the home stretch but now he’s really almost out of the restraint, expensive and sturdy as it is.  His seat belt’s still on, but that won’t last once Houdini escapes the harness, and it’s going to happen any second.  Luckily there are cars in front of me but not behind, so I hit the brakes harder than I need to, and it shocks him into just sitting there…but only for about a block.  So I speed up a little and he’s pushed back in his seat, unsettled again by the sudden car motion…but only for about another block.  I hit the brakes again.  Then speed up.  Then hit the brakes.  Then speed up.  In this ridiculous manner, I buck my way home, like someone learning to drive a stick and failing miserably.

The pendulum swings again today, with only two aggressions at school, none at afterschool, and none at home.  Now he’s asleep, and I’m here with my tea to tell the tale of Dr. Jekyll and Mr. Hyde.  Once again I am the grateful recipient of deliberate acts of kindness this week, including two delicious dinners, a box of peanut-buttery Do-si-dos (made all the more awesome because they’re impossible to find this time of year), and a day of almost-aggression-free Jonah.  Thank you.

I’ll take everything I can get.

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so much for fine

Posted in autism, behavior, Uncategorized, tagged on November 17, 2010| 1 Comment »

It’s always interesting and enlightening to me to review the old posts here; I feel like I should chart them – become scientist and statistician, calculating probable provocations and correlating causes.   Everything was going in the right direction, wasn’t it?  With minor setbacks, we’d come to a place where he was only (and I use that word with irony) aggressing one to three times a day.

Here I’ve just got to pause and mention (not for the first time, I realize, but it bears repeating) that I get the feeling when I tell someone my son had seven “aggressions” at school today, they are envisioning tantrums.  What’s the big fucking deal? I can almost hear them think.  It may be paranoia on my part, and I know I shouldn’t care either way, but sometimes I want to install a video camera and film the whole kicking, biting, thrashing, hitting, enraged scene sometime to play it back for the world. I actually felt vindicated when it took 4 grown men (3 of them cops) to hold Jonah down on the way into the CDPC crisis center that God-awful day, if only to prove I wasn’t such a pussy after all.

But why am I seeking validation in the midst of this mess?  Maybe because I am beginning to feel slightly unhinged.  I need something to count on, and everything that was solid has liquefied.  Every slope is slippery; every day a question mark.  There’s no consistency to his behaviors.  No reason for them happening today and not yesterday.  Or is there consistency and reason and I simply don’t, or won’t, or can’t see it?

I puzzle it out and puzzle it out but I have no idea.  I want a magic wand, not to wave the autism away but to make him happy again.

I should pitch this life to reality TV producers.  Come look at our crazy-ass household for one day. They’ll jump all over our three-ring-circus existence like white on rice.  CDPC and Four Winds, child protective services and separation.  Violent kid with autism.  Shitty diapers.  Meltdowns.  Mom sobbing.  Dad yelling.  And autism’s such a hot topic right now; it’ll sweep the nation.  I’ll be the new Kate Gosselin.  Ugh.  Somebody shoot me.

This morning Jonah seemed a little, well…squirrely, I guess you’d say.  He had a certain look in his eye I’ve come to recognize and almost fear; that boy communicates more with his eyes than anyone I’ve ever met before.  But I managed to get him fed and dressed and off to school, and I drove happily to work (will I never learn to keep my guard up, to expect a day of difficulty?), then missed a call on my cell from the social worker at Wildwood; she left a voice mail telling me Jonah’d had seven aggressions thus far (by 12:55pm) and did I maybe have some insight or did I know anything about him not feeling well?

I tell you my heart sank.  Seven aggressions?  Seven? So, what, do the meds just suddenly stop working?  Is he feeling sick and he can’t tell me?  (That thought horrifies me).  Is he scared?  Confused?  Does he want something he can’t communicate to us neurotypical folk?  All of the above?  WHAT?!

So I spoke with the social worker (no, I had no insight and no, I had no idea if he wasn’t feeling well), and Andy made a plan to meet Jonah at the Center for the Disabled right when the bus arrived to drop him off, and then take him straight to our house.  My boss allowed me to leave early enough so I could meet them there and Andy could still go to his night job.

When I walked in at 4:30pm, they were in the midst of an after-attack, which is visually similar to a town hit by a tornado, right down to the injured and shaken survivors.  We finally got Jonah quieted down and to bed, so Andy was able to shower and leave for work (late).

Our sitter, a great guy who teaches at Wildwood, came at 5:30pm; I paid him good moneycoin essentially to be an adult sane person to talk to for an hour.  Oh, and I also paid him in literature, compensating his company with a copy of The Curious Incident of the Dog in the Night-time.   Jonah had just fallen asleep when the sitter arrived, and I needed his protection to make sure the kid was going to stay asleep.

Even Andy said he never wants me alone with Jonah again.

That he never wants to be alone with him again.

So much for fine.

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zero point zero = perfect

Posted in autism, trains, tagged , , on November 15, 2010| 2 Comments »

“Played follow the leader
Keeping my steps in time
Counting on the wonder ahead
I leave the pain behind…”

~ Guster, Perfect

Yesterday = 0.0 (zero point zero) attacks.  Agressions.  Flip outs.  Whatever you want to call them, there were none!

Instead there was escalator fun, and we saw trains, and then Andy came and watched him lots, so I went escaped into the woods at the Grafton Peace Pagoda with my cousin B where we dug in the dirt, layed in the leaves, hefted rocks, molded birch bark around leaning saplings, munched on bagels with cream cheese, and sat in meditation in the beautiful temple. 

Thank you, God; I am good today.  People can come in to work and see me and they can ask me how I am doing and I can say I am doing fine and I can actually mean it. 

We are doing fine.

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jonah and the crow

Posted in autism, language, Uncategorized, tagged , , , , , , , on November 13, 2010| Leave a Comment »

“Stuck without a captain or a chart,
No one seems to know just who to follow anymore;
Hang on…hang on…there’s a twilight, a night-time and a dawn.
Who knows how long? So hang on…hang on.”

Hang On – Guster, from Ganging Up on the Sun

So I hang on and I hang on and I hang on.  Now I’ve thrown myself back over to the safe side of the cliff.  Is it dawn?  There’s light here.  Solid ground.  And I’m still standing (raking, even, today) in the autumn-chilled sun of mid-November.  Andy is helping with Jonah again and it is near bliss to be able to go into the woods and sit or make pictures

…consciously dropping my shoulders, breathing deep the clean forest air.  I’d almost forgotten I’d have help again.

Jonah attacked once so far today when he was with Andy, in my car.  That safety harness I bought has proven worth its weight in gold.  Now Andy’s off to his new job and Jonah’s napping on the big chair in our family room with a Mother Goose book clutched in his hands; I’m stealing a minute here before we go to my mom’s for spaghetti dinner.

Yesterday when I got home I found a reusable green grocery bag on my porch with a card, chicken dinner, black soda, and some other goodies in it…from friends J & Mi (I’ve got a whole periodic table of the elements going on here with my ‘identity protection system’).  It is a blessed thing to not have to prepare food, and it is humbling to know that people care.   I’m grateful – even as I bitch about our Lifetime TV existence I am grateful.

Andy took Jonah to see Albany’s Veteran’s Day parade on Thursday, and as they were walking from where he’d parked to a decent vantage point, they had to step between two bushes on either side of the path.  Andy tells me that a big crow cawed, practically right in Jonah’s ear, and Jonah stopped short in surprise.  Then the crow cawed again, and some other birds in the other bush answered, and Jonah just stood there, half-fear and half-fascination on his face.  Andy says finally he had to drag Jonah away – that the birds themselves were probably enough of a parade for him.

There’s a fable fit for Aesop in there somewhere:  Jonah and the crow.

I guess the actual parade didn’t do much for him, with all its too-loud brass-filled bands and assorted military vehicles & marching veterans.  He put his hands over his ears for a lot of it so when there was a break in the action, Andy led him away and back to the car.

Moral of the story:  A parade in two bushes is worth one marching down the street.

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to sleep, perchance survive

Posted in autism, Uncategorized, tagged , , on November 10, 2010| 2 Comments »

I can’t believe it’s only Wednesday.

Setting the clocks back sucks – all this darkness.  And Jonah was falling asleep early as it was, around 7pm every night because of the meds, which now means he is out by 6:15 or 6:30pm despite my very best efforts to engage him and keep him awake. I guess I should just let him sleep when he’s tired (we’ve always eaten when we’re hungry, so why not?), and he does stay asleep for 10 or 11 hours lately, so I’m not sure what’s bothering me so much about it – especially since it cuts way back on the amount of time during which he could possibly/might very well attack me with one of his random aggressions.

Maybe I’m bothered because we don’t have much fun together anymore.  I used to chase him through the house, shouting “ROAR!” — and watch him run, screeching with laughter, away from the “monster.”  I hope he wants to play again soon.  I’ve been so wrapped up in his aggressions that I haven’t had a chance, even, to miss the fun.

When I picked him up today at 5:20pm at the Center for the Disability Services, he was already downright listless.  No school tomorrow, so I didn’t worry too much about cramming bath time in there somewhere.

He ate his dinner and I gave him his pills.  I brushed his teeth, deftly administered his eye drop, and asked if he wanted to play with straws on the floor, making letters and shapes.  “No straws?” he answered in a small voice, lilting slightly at the end as if asking a question.  I suggested:

train-on-TV (any one of a number of train shows we’ve recorded or on DVD), then  

camera (even offering him the use of my black camera, a higher end model than the aged silver camera I usually let him use), then

messages (meaning I will let him play through all 15 or so of our answering machine messages, usually a much-sought-after activity for him and a groaner for everyone else, since they’re mostly old political messages and he likes to play them LOUD)

but each time:

“no train-on TV?”

“No camwa?”

“No messa-kiss?”

He just wanted to curl on the couch and go to sleep.

And then I do too.   I don’t watch much TV and though I adore my books, lately I’m too…

(guess what I’m about to say?)

...tired to write, read, talk, think, you name it.  I know it is ridiculously early to go to bed but then what do I care? It’s dark and it’s cold and Jonah’s asleep and I’m tired too, boo.

Momma’s tired too.


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the power of perfect weakness

Posted in autism, behavior, tagged on November 6, 2010| 1 Comment »

Two attacks today.  It’s not the severity of them that kills me – it’s the constant false hope that they’re gone now, that he isn’t going to do this anymore, that we can reclaim some kind of normalcy.  We live a land mine life.

Some things in my life are on empty.  There is no more calm in me.  Teeth and jaw clenched, shoulders and neck crossbow-tight — this has become my body’s normal state.  There is no more mental rest either, no more letting my guard down, no more of anything approaching complacency.  There might be more coming; I hope more calm comes and more rest arrives, but it all feels so very far away.

They say God doesn’t give you more than you can handle, but I think they’re wrong.  <– If you click on those words, you’ll see an article I found by someone who agrees with me.  She quotes from the Bible, and I liked this one thing very much:

In 2 Corinthians 12:9, Paul wrote, “He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

If that’s true, I’ve got lots to boast about.  The power of perfect weakness.  I love it.


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denominations

Posted in autism, behavior, trains, tagged , , , , , , , on November 6, 2010| 2 Comments »

So I’m hooked up now with in-home behavioral support that’s an ongoing service provided through Wildwood (it should be starting in early December), and my application through the Center for Disability Services for temporary/as-needed respite is being reviewed on the 30th of November.  I’m getting Jonah back on my health insurance, making an appointment for him to see an endocrinologist and a new pediatrician who’s got experience with autism, working full time, and learning my boy all over again.

Jonah’s not as dopey and out-of-it as I had complained about before, and his aggressions have gone down to almost none (at least at home – he still has one or two a day at school) but he is different.  He falls asleep now at 7pm and wakes at 4 or 5 am.  His appetite is enormous – he wants four or five things for breakfast every day:  banana dipped in syrup, followed by a banana with peanut butter spread on it, followed by a piece of pizza, followed by sugar (what he calls a Kit-Kat).  He’s indecisive about what he wants – even more fickle than before, changing his mind almost in mid-request – though Grandma’s house is still a winner every time, and he still wants to see the train as much as humanly possible.

He’s active in school, too; his latest love is roller-skating, they tell me, which makes me want to try Guptil’s in Latham to see exactly what the kid can do.

And he’s learning things by leaps and bounds.  This week he brought home colored-in paper representations of different coins.  “What’s this?”  I asked him, holding up the copper-colored one with Lincoln’s head on it.  “Penny!”  he answered confidently.  He got nickel right, too.   Well I’ll be damned.  Denominations. So much for moneycoin.  He’ll have surpassed my math abilities in no time.

Things are very changed in our lives too.  Part of it is the season – November:  my least favorite month of the year, when I don’t want to take him to the playground in the cold and wind, when I feel beaten down and dragged along by life.   Part of it is there hasn’t been anyone to share the care-taking duties with, so I’m too tired to write when I get him into bed and I’m reluctant to write about being sad or feeling crappy.  Hopefully soon Andy can start taking him more.  (He’s here watching Jonah now so I can write this).  Hopefully I can keep afloat.  Hopefully I will stop being afraid to be alone.

Looks like these afternoons of reverie are through
What’s left for me to say, what’s left for me to do?
Float along and feel the water on my back…
Try not to sink down to the bottom.

~ Guster

M watched Jonah for me last night so I could go with Mx and P to the Dave Matthews Band concert at the Knick (I don’t care how many times they re-name that place, it will always be the Knick to me).  It was the first time in a long time that I’ve been out anywhere, doing something fun.  I’d never seen DMB before and it was really a very good show, but still I lament missing my beloved Guster in Vermont on October 28th.

My second article for the Capital District Parent Pages hit the stands on Monday, and I have to admit it’s fun to see my writing in print.  I’m proud that people are reading  little stories about Jonah, though I keep most of what’s here in the blog out of my articles.  It’s all just a little too edgy for a column that’s positioned across from articles about Thanksgiving dessert recipes you can make with your children.

Now if Metroland ever gives me a column, I’ll let loose with foul language and tales of psych ward madness galore.  Until then, you’ll have to read that shit here.

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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

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