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the watch unwinds

Posted in Uncategorized, tagged , , , , , , , on August 20, 2014| 2 Comments »

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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george clooney’s harley

Posted in Uncategorized on August 8, 2014| 5 Comments »

Have I ever mentioned that Andy’s landlord looks like George Clooney?  I call him George every time I see him – so much so that I can’t recall his real name at this writing.   Last Saturday when mom and I visited Jonah, I saw “George,” about to strap on his helmet and take his Harley for a ride.

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

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I didn’t even KNOW he had a Harley.  You could have knocked me over with a feather.

He promised that next time he’d take me for a quick spin, so you bet your ass I’ll be leaving an old pair of jeans and socks & boots at Andy’s for the mere possibility of such a cool occasion.

Jonah was good – funny and sweet – for most of the time.

Grandma bought creamsicles and took pictures of boo & me outside

Grandma bought creamsicles and took pictures of boo & me outside

We got silly

We got silly

And then I started playing with my photo editor

And then I started playing with my photo editor

Until it was over the top

Until it was over the top

Jonah's hamming it up with grandma

Jonah’s hamming it up with grandma

Jonah had one serious aggression at school since then, and Andy has blessedly volunteered to take the calls from the school about such things, because I think he can “shelve it” better than I can, at least right away.  A call to me from the school almost always results in my imagination taking me, sharp-focus, into the classroom where he has perhaps just taken a chunk of his speech therapist’s hair in his fist and is kicking mightily and thrashing around.  Where it takes another caregiver to help the first, to keep Boo safe and everyone around him as well.

And then I inevitably tear up, and can barely thank them for calling, and when I hang up, I usually cannot but allow myself to cry, and for so many reasons, some of them stupid.  I cry because I am upset that someone – anyone – got physically hurt, and that my son was involved in any of that.  I cry for the grueling everydayness of it all for those who have chosen direct care or special ed teaching or just working at Anderson…and how amazing they are, and how the last thing they deserve is to be kicked, scratched, bit, head-butted, whatever.   I cry because I’m helpless.  But really I don’t want to write about why I cry anymore when they call.  I just do, and it’s easier to hear the news from Andy (always slightly sugar-coated, I imagine) — unless of course it’s an emergency.  I’m grateful Andy’s willing.

Tomorrow he’s driving Jonah up to grandma’s house (near me) and so he will get to see train, take baths, eat everything in sight, and go swimming in the next door neighbor’s pool.  No diving anymore, at my mom’s insistence, even though I know Boo could easily dive in the 4+ feet of water in that pool & I’m (admittedly, perhaps foolishly) unafraid.  He always knows where he is in this world – in the car, in the water, while climbing rocks or waterfalls – he never falls, never fails.  But he likes jumping in too, so that’ll be good enough for him.

At least at Anderson, the deep end is deep and I’m sure he’s honing his diving skills (and swimming along at the very bottom of the pool like an undulating eel).  I wish I could watch him more.  Astral project into his room and hover just above him, singing him silently to sleep or wakening him with mamalove.

Perhaps certain portions of the school and residences could have 2-way mirrors, so parents could come and just watch their kids.  I want to see him in what is now his own environment, his turf.  Maybe I can talk to his behavioral specialist about taking a day and coming down to “spy” on him. Or something.

With Jim I could eventually even come down and take him to the park or  bowling or to the movies… of course after Jonah gets comfortable with him.  I think Boo will love him, and I think Jim and Andy will get along just fine.  I hope Jim loves my Boo, but I’m so in love with my boy that I can’t imagine how anyone could not love him.

We’re coming up on the third anniversary of the day we placed him at the Anderson Center for Autism.  At 12 years old, that’s nearly a quarter of his life.  What if we hadn’t done it?  What if we just kept dealing with it, like those people on the severe/classic autism group on Facebook who seem to also need (but can’t, or won’t, or don’t want to) seek residential care?

There are undoubtedly parents who pour every ounce of sweat and every penny of finances and seek out the best of therapists, doctors, and care workers for their child, to keep their child home, and they are to varying degrees successful.  Every family is different.  Every kid with autism is different.

We went a different route, but it didn’t feel at all like a choice.  It felt like a life vest, thrown with two seconds to spare, to save us all from drowning.  And now it feels right for Jonah, which is of course what we wanted – for him to experience every single piece of knowledge and caring and socialization and fun they could safely offer him.

What a strange life we live, Andy and me, in our separate worlds, broken and pieced back together, he and I.

Miss Jonah a lot tonight.  I can’t wait to see him smile and splash, to catch a train and a bath and some loving from us all.

Sleep tight, Boo.   Mama is right here loving you.

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cough syrup for everyone

Posted in Uncategorized, tagged , , , on July 29, 2014| 1 Comment »

Today someone from the Anderson School called to tell me that Jonah had a big-time take down.  He must have a little cold because it all started when they brought him to the nurse to give him some cough syrup.  He wrangled the bottle away from the hapless nurse and chucked the whole thing at her, then topped that off with an attack.  After a few minutes being held in a two-person take down, Jonah calmed down only to need another 1-person hold a few minutes later, then possibly another aggression right after that (truthfully, I lost count) before it was all over.

Jonah must really hate that kind of cough syrup, I thought at first.  But then he would have said “no,” or something, right?

This is the second major aggression in two weeks (and yes, I do remember the days where that statement would have been a miracle).  I hate the school’s area code.  845 comes up on my phone and I get a shiver down my spine.  It could be anything, but it’s almost never anything good.

Plus they have someone new who makes the phone calls home.  She talks as if she’s reading a report off a card to an uninvolved third party, and I’m not a fan of that.  I’m his mom.  But it’s really a small thing to bitch about in the midst of it all.

The Saturday visits with my mom have been very good, thank God.  Boo is crazy for the usual:  trains, baths, all the food he can eat, car rides, grocery store.  Sundays are good too, for the most part, Andy says.  Jonah’s new thing is watching the whole of Willie Wonka and the Chocolate Factory.

If you get him to YouTube and type in Trains, Jonah can select the one he wants. Always at top volume.

If you get him to YouTube and type in Trains, Jonah can select the one he wants. Always at top volume.

I hope he feels better, my sweet boy. I want to hold a cold cloth to his little head, sing Guster softly into his ear, and hold him in my arms as he falls asleep, all childlike and cherubic-not-too-sick.  All of it fantasy, even if it were possible.  Luckily Jonah is in general a healthy little kid and we’ve not had to deal with anything super-serious (not counting his eyes of course).

So we’re watching Jonah’s health and my own too – I was going to blog about my attempt to be a kidney donor but instead I’ll just give it a mention.  The last set of tests before the transplant at NY Presbyterian Hospital  showed that I had kidney stones and therefore can never donate a kidney.

Please send healing thoughts an/or prayers to my intended recipient, D, who has no kidneys at all and is on dialysis 3 times a week at age 28.

And while you’re at it, please join us in hoping and praying that Jonah’s aggressions stop, that he was just not feeling well, that he’ll continue to verbalize more and attack less and less often.

A happy, blurry moment

A happy, blurry moment

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paradise by the grocery store light

Posted in Uncategorized, tagged , , , , , on July 13, 2014| 3 Comments »

Yesterday my mom came and picked me up to visit Jonah; we switch off every week, taking turns whose car we take and who drives.  I was exhausted from a long day of work in NYC on Friday, so it was nice to just zone out on the way down.

Once we got to Andy’s and piled in his car to collect Boo from his house on the Anderson campus, though, I was all excitement; I’d missed my boy something awful this week.  When we arrived, Jonah was outside on the playground with the residence manager, who told us he’d had a good morning.

Without waiting, off strides Jonah to the car, pausing only for hugs and kisses – then walking, all business, faster — ready for his Saturday visit with daddy and mama and grandma.

Fear of a Black Planet? he says by way of greeting and musical selection request.  My poor mom up front must endure Public Enemy, played very loud at Jonah’s insistence, while me & my boy groove in the back.

Once in Andy’s apartment, Jonah efficiently opens the bags and cooler grandma brought and puts everything away in its proper location – the cokes and 7ups lined up neatly in the fridge door, the sandwiches on a shelf, crackers and cookies and whatever else in the cabinet.  Usually he doesn’t put every item away, but even when he does, he takes it all right back out again to dig into lunch.

Boo sits nicely at the table 90% of the time now, legs like his mama with one wrapped around the other under the table.  He eats enough for 2 or 3 kids.  His tune-fish sandwich.  Half of mine.  Chips.  Cheese Puffs.  Donut.  Ham and mustard on a roll.  Spinach leaves with blue cheese dressing.

Finally he asks for peanut butter crackers, which we give him but he does not eat.

Here’s where he changes tactics; you can almost see the neurons and synapses at work in his little boy head.  Walking over to where Andy is standing in the kitchen, he says five cheese lasagna? — a frozen lasagna dish Andy often buys him at the grocery store.  Jonah repeats his request rapid-fire, three or four times.  Andy opens the freezer to show Jonah the three packages of five cheese lasagna already there, though he has no intention of heating one up.  I mean, Jonah’s just eaten all this food.  Too much already, really.

But he asks Jonah anyway.  Want some?

Jonah tries his request again – five cheese lasagna? —  ignoring the packages his daddy has just produced.  Then it hits me.  That little clever shit.  He doesn’t want five cheese lasagna at all.  What he wants is grocery store, and he knows it’s not grocery store day, so he’s going to work it however he can to get there. He’s playing his hand carefully and knows he ought to fold, but he can’t resist calling off the bet.

So he goes all in, asking straight out:  Grocery store?

Evidently Jonah thinks “grocery store” is nirvana; Andy takes him on Sundays with varying degrees of success, if you define success as selecting your items, putting them in the cart, maneuvering to the self-check-out lane, getting out of the store, and returning to the car.

Tomorrow, buddy.  We’ll go to the grocery store tomorrow, Andy says patiently.

Now Jonah’s mad and sad.

He starts to cry, fast and hard, no ramping up slow-like.  Sobbing, he throws himself on the floor, crying grocery store?  Grocery store!? over and over — a Shakespearean tragedy whose protagonist has just discovered his beloved is truly out of reach.

Then, just as suddenly, he flings himself across the room and lands on the couch.  Bam Bam Bam, he pounds his fists on the coffee table.  Bam Bam Bam.  We’re all just kind of letting him work it out.

Then into the bedroom, collapsing on the bed, hitting the pillows, crying out.  He even yells Amy! twice — I don’t think I’ve ever heard him say my first name.  Andy doesn’t want me to come in; he’s protecting me from an aggression.  But I gently push past him, risking it to try and calm Boo.  Jonah cocks his arm back at me but lowers it again quickly when I say no hit mama.  It takes him a while to get it together in there, but he does not hit mama.

He does not hit mama.

As much as I hate watching him go through his cycle of anger and despair over denial of grocery store, I am proud of Jonah just the same.  It all means he is expressing himself more appropriately, as tantrum-like as he looks in the process.

He’s mad, so he yells.

He’s sad, so he cries.

He’s frustrated, so he hits the table with his fists.

But he didn’t hit us.  Not this day, anyway, or any I’ve had with him in a while.  I consider it a big breakthrough.  I continue to hope beyond hope that his aggressions will mitigate into disappearance.

And I just know he had a kick-ass time at grocery store today.

Boo took this one of me. I leaned down 'cause he wasn't using his aiming-the-camera skills very well.

Boo took this one of me. I leaned down ’cause he wasn’t using his aiming-the-camera skills very well.

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life in the way

Posted in Uncategorized on July 9, 2014| 4 Comments »

My personal life sometimes gets in the way of my telling Jonah’s story.  I don’t know how much to say or if I should say anything at all and just leave the blog be until I’m ready to write about Boo again.

The thing is M and I broke up, and now I live alone in my house — M gone, sweet Jack-dog gone, everything weirdly still.

I have never lived alone and it’s going to take some getting used to.

So there’s that.

My life has gotten in the way, but I’m going to be fine and Jonah is his usual self, for the most part – a cute little pisser of many requests and demands,  in search of train and car rides and other fun.

I’ll be back soon with new pictures and video.

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this bird has flown

Posted in Uncategorized, tagged , , on June 25, 2014| 1 Comment »

Jonah is well.  There is the usual stress for him associated with the end of school, the break in his routine and its resulting aggression or crying jag.

When there is a day off from school Boo is used to visiting with his daddy, but his daddy can’t come and get him every day and poor Boo can’t understand that – or perhaps he simply refuses to understand it.  I can’t wait to see him on Saturday.  Last Saturday I had less time to see him because I attended a parents’ group meeting on the Anderson campus.

Jonah has had a few aggressions since my last post.  My mind has blessedly shifted from a place of “watch the pendulum, hope it doesn’t keep too fast a tempo, wish it would silence itself into coda”  into a calmer spot of radical acceptance, where Jonah is Jonah and we all help him nurture, grow, and get through periods of stress, fear, or anger.  Especially his beloved daddy; long live Jonah’s amazing daddy.

Jonah and daddy = love

Jonah and daddy = love

This morning I walked outside to check my tomatoes (which will be miraculous plants if they are even close to “knee-high by the Fourth of July”).

I squinted at what looked like a piece of wood stuck in the fence…half on one side, half on the other.  I moved closer and saw it was a bird – a young bluejay, sitting as if too big to get out of its spot and fly away.  From about a foot away, I looked at the bird and the bird regarded me calmly.  I reached out to ever-so-gently touch its feathers, thinking maybe it had been stunned scared by Almanzo-my-cat, but Manzo was inside.

Then I crouched down so we were eye-to-eye and I stared deep into the bird’s  sparkling, black, liquid eye, feeling like Ricky Fitts filming the “beautiful dead bird” in the movie American Beauty…remembering him, for a moment, and how he felt about death, and that paper bag he danced with — how he said:

That’s the day I realized that there was this entire life behind things, and this incredibly benevolent force that wanted me to know there was no reason to be afraid, ever. Video’s a poor excuse, I know. But it helps me remember…I need to remember… Sometimes there’s so much beauty in the world, I feel like I can’t take it, and my heart is just going to cave in.

I snapped out of this and went into Wildlife Rescue Mode.

How do I help this bird?  It has to be injured; otherwise it would have flown away quickly the moment it saw me.  Confused and trying to remember everything I’ve ever learned about nursing a bird back to health (which is one chapter in a Laura Ingalls Wilder book where they find some baby birds and try to save them, failing one by one until they all died).

I went into the house and got a shoebox.  I put a soft dish cloth in it, then took another dishcloth and went back out to lift the precious little bird gently from its perch, lay it in the soft box, and examine it carefully.  When I came back, not one minute later, the little bird had flown away.

And circling above me was a larger blue jay, soaring from branch to wire to chimney.  Though they are chirpy and scolding birds, this one made not a sound.  It was as if he were saying hello, and maybe thank you, as well.  I double-checked around the fence to be sure the little one hadn’t fallen.

It was simply gone.

And so I clutched my box and soft cloths and went inside again, sweet tears coming into my eyes.

This day I was able to visit closely with a small bluejay, who was not afraid of me in the least, and have a conversation with his father (?)

A miracle to begin a beautiful day.

“And when I awoke I was alone
This bird had flown…
So I lit a fire
Isn’t it good?”

~ Norwegian Wood by the Beatles

I am so blessed.

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once and for (edited) all

Posted in Uncategorized, tagged , , , on June 9, 2014| 9 Comments »

This post is in response to a comment I received on yesterday’s post, and in response to all the silent lurkers asking the same question:

If Jonah is so much better, why not bring him home?

First of all, Jonah does not live in an institution.  He lives in a house with 7 other kids and round the clock caregivers who love him.  He has a regular schedule & routine.  He goes to school on campus with wonderful teachers who nurture and educate him in a way that no one else could.  These people live and breathe autism.  Boo would never, ever have come as far as he has without being at the Anderson Center for Autism for the past three years.

Anderson also has pre-vocational and independence training, with mock apartments and mock work situations depending on each child’s ability.  The children learn to make beds, do laundry, help cook, etc.   The caregivers  take Jonah out in the community and teach him how to behave appropriately in the grocery store, at the movies, bowling, etc.  They have a huge pool on campus and Boo loves to swim.

Jonah is not “fixed.”  They have not cured him of autism.  I called it a “mini” major milestone for a damn good reason.

In fact, just last night Andy called and told me he’d taken him all day (which he does often, whenever he can, because Andy moved just 5 minutes away just to be close to his son)… and that Jonah was “squirrely” — he’d had an aggression just that morning because another kid came in his room and Jonah didn’t want him there.

Jonah ended up attacking a caregiver and pulling some of her hair out.  Now, that’s not a “two-person take-down” – the stuff I’ve been speaking of that has been mitigated to once a month or so — but it is aggression and he still needs to work on that.

I am still afraid to be alone with my son, Andy suggested I add once he read this.  I don’t like to type it but it is true.  Jonah cycles through his behaviors (what I’ve called the pendulum) and at any time he could really hurt someone during an aggression.

Andy also suggested I not answer flamers, so I took a lot of other stuff out.

‘Nuff said.

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major mini milestones

Posted in Uncategorized, tagged , , , , , , , on June 8, 2014| 10 Comments »

So last week my mom and I are sitting at Andy’s kitchen table watching Jonah put his socks and shoes on (which he can now do pretty much by himself, although the ankle of the sock sometimes ends up on top).

If he needs help, Boo will ask “I need help please?” and you just know those teachers and caregivers at Anderson have been working on teaching him this since God knows when.  I don’t remember exactly when he started doing it but that’s what part of what this blog is for – to account for the history of things.  It’s also a cathartic process, a true-spun story, and an offering to anyone interested, most especially for those on a similar path…most MOST especially for those who need to feel they are not alone right now.

The whole “I need help please” was incredible.  It took so much frustration and anger out of my son.   Suddenly, like a flipped switch, a synapse turned ON.  He made the connection.  I can ask for help and someone will help me.

It’s such a simple thing.  So simple that many I could tell this tale to would think so what?  I suppose that’s because regular kids learn this stuff when they’re, what, one and a half?  I don’t even know.  But the point isn’t when Boo learns things.  It’s that he’s learning things!  No matter how slowly – no matter how long it takes – he is learning and doing so faster and better than before — and, along with it, only has a serious aggression every month and a half or so.

YES, you read that right,  Where three years ago Jonah had a serious aggression requiring a two-person take-down often 12 times in 12 hours, now it is fewer than 12 times in a year.

I owe the teachers and caregivers at Anderson everything.  I can barely talk to them sometimes; I am so grateful I start crying.  I wake every day and tell God thank you.  I can barely talk to God sometimes; I am so thankful there are no other words.

So yeah, last week. I get up from the table to accompany Jonah and Andy on car ride of which grandma traditionally doesn’t partake, for two reasons:

1) Jonah disallows anyone riding in the back seat with him if this is at all a possibility.  The kid likes his space.  And while it does not entail the lion’s claws, kicks, and headbutts that it used to upon daring the feat of entering the backseat with Taz-Boo next to you, it is still something that will frequently have him pushing you away, demanding more and more space, until you are smushed against the window and door.

2)  The car ride usually consists mainly of Jonah demanding whatever music he has chosen to be played louder and louder and still louder.  Additionally, that music is typically of a genre my mother despises almost as much as she despises loud music of any kind.  (There are no back speakers in the car, so at least Jonah’s hearing is likely safe.  Plus we don’t take it past 6 out of 10 or so, ever). We just tell Jonah that’s the loudest it will go.

The point of this dissertation and tangential post:  When we left my mom behind at the kitchen table, Jonah turned back and said “bye, grandma.”  No prompting.

I think I was so in shock I went into automatic pilot and put that whole thing on a shelf for a good minute. These mini-leaps are simultaneously marvelously huge — but you can’t very well freak right out in the midst of it all.

And the car ride was fun, Jonah requesting a Public Enemy throwback to the late eighties and bobbing along to it like the thumb-sucking hipster he is…

Then yesterday, all of us are sitting at the table having lunch (and Jonah sits at the table to eat lunch now, wonder of wonders, rising to circle or walk around a bit notwithstanding).  We’re eating our “tune-fish” sandwiches and eating chips when Jonah takes a big sip of Vitamin Water (his new kick) and says, looking at each one of us in turn, “Hi, mama.  Hi, daddy.  Hi, grandma.”

Oh——kay.  Hi Jonah!  Hello!  Keep that synapse on, kid, I want to have a whole big conversation with you and I know it’s all baby steps but oh wouldn’t it be wonderful if it were the start of conversation?  Because there is so much I want to tell you and so much more I want to hear you say and I know I am dreaming but Oh God Jonah you are initiating conversation and that is BIG, Boo, I don’t need a speech therapist to tell me that, but I will definitely seek out your speech therapist and thank her, fall at her feet crying tears of joy, because I would love to know you on another level, Jonah, my son my only child, really know you…trust that mama will meet you halfway.

On our car ride yesterday I even caught one of Boo’s verbal breakthroughs on video — him answering me instead of repeating back to me what I’d said.

The thing about “verbal” children with autism is there as many variations of “verbal” as there are variations in autism itself.

Jonah is verbal, yes, but he didn’t say anything but mo (more) and point or use PECS  till he was, what, 4?  Andy can help me remember, for that was before this blog.  Anyway, verbal for Jonah has meant, at first, words to express wants (cookie?  black soda? car ride?) and then small phrases “want music on” (which he still says whether he wants it ON or LOUDER – maybe that’ll be his next verbal hurdle), then full, albeit very limited, full sentences — “I need help please” — but never before has he answered me.  Before, had I said to him “Hi, Jonah!” he would have parroted back “Hi, Jonah!”

Of course one of the major frustrations is he could never – and still rarely – tells us if something hurts.  I want him to get better at that so we can help when he’s sick or in pain.  One strange footnote and exception is when he was years younger, the day of his first eye operation.  In complete and utter despair, he leaned his head against the window in our kitchen and uttered, clear as day  “eye hurt?!” as if the pain forcibly yanked the language right out of him.  We gave him what pain meds we could and I remember cradling him close helplessly.

I could even get him to say “I love you mama” and he would parrot back to me “I love you mama.”  I still can.  In fact, it will be one hell of a day when my son turns to me without prompting and says “I love you mama.”

That one I’m still waiting for.  But I believe it will come, and the joy of that belief is indescribable!

– – –

There are other things I want to write about.

I’m taking art classes and I have ideas for a forum from which I can spout about my major preoccupations with Laura Ingalls Wilder, Guster, and Elfquest – among other more stuff, like my first attempt to learn the guitar and other musings.  Maybe I could start a new blog.  I want to write more.  I’m all about creation lately.  Bead necklaces and Sculpey clay, sketches and nature art.  It feels really good.

Some pictures for you:

Sketches from art lesson #2, done with a 4H pencil. Mine is on the bottom left - the darker one. My teacher wants to put it in a beginners art show!

Sketches from art lesson #2, done with a 4H pencil. Mine is on the bottom left – the darker one. My teacher wants to put it in a beginners art show!

Jonah and his "salad" (spinach leaves and ranch dressing)

Jonah and his “salad” (spinach leaves and ranch dressing)

This one is funny, but it DOES make sense…

My kid had it right all along. He has always pooped the "right" way. Glad we never corrected him! ;-)

Jonah had it right all along. He has always pooped the “right” way. Glad we never corrected him! 😉

I love making collages. This one I created on the back of an envelope in which I sent a card, necklace, and other goodies to Robin Roberts at Good Morning America. Her book "Everybody's Got Something" was very good I wanted to write to her. Never realized before what she'd been through.

I love making collages. This one I created on the back of an envelope in which I sent a card, necklace, and other goodies to Robin Roberts at Good Morning America. Her book “Everybody’s Got Something” was very good & I wanted to write to her. Never realized before what she’d been through.

Jonah's after-bath watching of endless trains coming and going. Thank God for the railfanners that put these on You Tube,

(Jonah’s after-bath watching of endless trains coming and going. Thank God for the railfanners that put these on You Tube).

LOVE to all this happy Sunday!

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checkmate

Posted in Uncategorized, tagged , , , , , on May 20, 2014| 3 Comments »

Sometimes Boo’s autism feels like a chess game.  Right now we keep putting that motherfucker in check.  We’ve learned, studied the books about moves and counter-moves, strategies and systems, and we are all becoming a better opponent.  Check.

The pendulum has slowed to teeny movements of to and fro –  a weakening player in the game.  Check.  I believe this because I need to believe this, no matter how many times the forward motion is halted, no matter how many times I lose a chess piece or a piece of my mind.  It’s as simple as it is difficult to learn and accept.

Do I sound “crazy”?  All these mixed metaphors.  I feel it these days, the crazy, all alien and weird inside my house where I work and am alone with a cat and a dog and no kids and no definition of myself to embrace.  It’s okay.  It’s okay, I tell myself.  Everything is okay.  Boo is doing so well, and you have escaped the rat race, and now there is peace in your home.

Still I am alien, a unicorn among moms who either have their children or they don’t.  And if one is gone there are others left behind.  The truth is I don’t want other children with me here to raise and figure out while Boo is away from me.  We only wanted one child, Andy and I.

But I am blessed and I am grateful and really all it takes to bring me back is to walk away from the chessboard, take a deep breath, and allow myself to be filled with those feelings of gratitude and grace.  There isn’t anything to fear, and worry is a waste of my time.  As I get older I realize more and more that everyone has their own shitpile, visible or no.

The pain we feel and the desire to feel happiness is what makes us most common as human beings, after all.  You are never alone, and neither am I.

I’m going into blah blah blah mode.  Red light!

Everything since last I wrote has been pretty much awesome with Boo.  Mother’s Day he was happy and sweet, and I’ve got lots of cute pics to share from our visits.  I am so lucky to have such a  precious son!

Jonah and me on Mother's Day 2014

Jonah and me on Mother’s Day 2014

The Mother's Day card Jonah made for my in school. His teacher even mailed it to me! This is side one...

The Mother’s Day card Jonah made for my in school. His teacher even mailed it to me! This is side one…

...and side two, which put a lump in this mama's throat...

…and side two, which put a lump in this mama’s throat…

Happy boo having quiet time on the big blue bed

Happy boo having quiet time on the big blue bed

We had to wait an hour and ten minutes for the doctor this time, and Boo was sooo good! Much thanks to P and J, who bring him up from Anderson to the doc appointments and keep Boo from boiling over!

We had to wait an hour and ten minutes for the doctor this time, and Boo was sooo good! Much thanks to P and J, who bring him up from Anderson to the doc appointments and keep Boo from boiling over!

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

hanging out with grandma

hanging out with grandma

very silly boy. (no, i did not let him lick the $10 bill he's holding). lol

very silly boy at another doc appointment. (no, i did not let him lick the $10 bill he’s holding). lol

I can't believe how big he is!

I can’t believe how big he is!

People say he looks like me. Here's me at 10 years old. What do you think?

People say he looks like me. Here’s me at 10 years old. What do you think?

Love to all…. & sending prayers and strength to my peeps in the autism groups I belong to on FB.

 

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what no one knows

Posted in Uncategorized, tagged , , , on May 8, 2014| 4 Comments »

There’s a portion of the autism population hiding in their homes afraid.  I always thought we were the only ones when it was happening to us.  The severe autism groups on Facebook tell their stories, and I have joined them even though my own journey through the aggressions and the helplessness and fear is largely over.

On the other side there is mostly peace for me now, especially nearly 3 years after admitting Jonah to his residential school, because I know my home and my body and my child are safe, that we are getting better, that I have no other children to worry about or care for.

What I never knew is how I was one of the lucky ones…the one who found a great residential school with an opening for my poor Boo, and quickly enough so that I did not completely disappear into despair before it happened.

I want to help these people who are tired, who are so strong but feel broken, who have no idea how or where they are going to find help.  Who buy drive-thru food for their child only for the child to throw it out the window….who clean up smeared shit, and cover up patches of bruises and scratches and bites incurred by their very own Tasmanian devil…who put on masks they don’t want to wear and face judgmental people who have no fucking idea what they are going through.

It’s like Andy DuFrane from The Shawshank Redemption, crawling through 500 yards of foul sewer shit to find the freedom on the other side, only there is no other side and they’re trapped in the sewer.

There are so many places the people in the severe autism group tell about, where their child was sent and abused, or neglected, and so they brought them home again.  There are so many areas of this country that offer no help at all.  The police have no idea what to do and the psych centers won’t take kids who can’t communicate effectively and the psych drugs are a sick, sad game of roulette.

I find myself holding back lest I become a residential school advocate.  I remind myself that just because it worked for us does not mean it is the right path for someone else.  I need to remember all residential schools are not as excellent as The Anderson School for Autism.

I can only comfort, and cheer-lead, and celebrate the joys, and give virtual hugs and love wherever I can.  I can talk about the Anderson School and offer this blog as a written account of the journey to the decision to place him there – particularly 2010-2011.  Read it and weep.  Or learn.  Or judge.  Or laugh.  As I’ve said before, if it helps one person it is worth everything to me.

What no one knows (except those of us who have lived it) is there is a giant portion of the autism population who are desperate for help.  They need that help and they need it NOW.  It all feels so insurmountable.

I’m still on 3 psych meds to get through the day.  I still hate Mother’s Day, because it feels like a fake celebration.  How can I be a good mother when I am not mothering?  As wise a choice as it may have been, what, exactly, is there to celebrate, but my own poor mother, who only wants to love and hold and spoil her only grandchild?

I want to send every one of these autism mothers a card, a gift, some reassurance.  I want to convince someone very very rich to build 10 or 20 or 50 residence schools — fantastic ones — however many it takes so people no longer have to live on the edge, fingernails digging in to the cliff.

As for Jonah, he is well and he has been happy, running around outside on the school’s playground, eating like a horse, his growth spurt starting so he is 5 feet tall now.  He has learned his simple sentences:  “I want cranberry soda please” and, still, the oft-repeated phrases:  “car ride?”  but if he is upset with us now he cries instead of attacks and he requests “quiet time” (usually lying down on the bed with him) instead of bursting forth in lightning-flash anger.

Jonah and grandma

Jonah (with his crackers lined up) and grandma

happily patting the chips

happily patting the chips

...and the cookies

…and the cookies

and a happy car ride

and yet another car ride

I have so much to be grateful for.  I want that for everyone in the group.  Someone needs to pay attention to us.   Not only are we not going away but we are increasing in number.

Here are a bunch of sweet Jonah pictures from our last few visits –  in several of which he is pat-pat-patting the package of crackers or chips or whatever, because he thinks it’s funny – and although we’d like whole chips and crackers, the giggles are worth everything.

My prayer today is a strong and fervent one – that the other parents like us find the help they need and that awareness is increased to the point where we can no longer be ignored or judged or swept under the rug.

Please, God, and thank you.

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