Feeds:
Posts

## mexicoke & magical lethargy

So even though I’m not a super duper Catholic, I decided to give up soda for Lent this year.  Now you may be thinking “what the hell kind of sacrifice is that” but trust me, I love love love my “sodee” and even though it’s bad for me it’s about the only substance-vice I have left.

So at 11:59pm on Saturday, April 19th, I was all about cracking open a tall Mexicoke in a glass bottle and by 12:09 that baby was gone.  AHHHHHHH.  Then I went to bed.

Mom & I didn’t go see Boo that day because Andy brought him up on 4/20 for Easter.  Jonah’s been mostly rocking the good side of the pendulum, but for the past few days he has been kind of lethargic too.  I hate to say it and many of you will understand that while you do not in any way want your child to be ill or hurt-y in any way, a vaguely sleepy aggressive autistic kid can be a wonderful thing.  Magical lethargy.  There are nurses who check him every day, and he has a doc appointment coming up, so we weren’t too worried.

And so when Jonah first arrived, he’d had a good night’s sleep and had taken 2 naps the day prior, one with his dad on a visit and one at his residence.

Lethargy or no, he did bound up the steps to see grandma and me, though at first he whisked by us to see what’s new in the house.

The Easter bunny had left baskets at both my mom’s house and at mine, so Jonah sat contentedly on the counter, surrounded by ridiculous amounts of candy but reaching for none except the octopus my mom got him.

(I honestly have no idea how to get pictures off my phone, and yes I am that dumb.  Once I figure it out I’ll insert them in this post).

He was so funny.  Here he is with his pile o’ candy and chocolate, and he looks me straight in the eye and says, sweetly, brownie?

We didn’t have a brownie (I had brought him some homemade ones last week (homemade for me means making a mix out of the box), so he settled for car ride instead.   Either there were no trains running because of the holiday or we just weren’t lucky, but the car ride satisfied Boo and we headed back, directed by him to play radio this time.

When we arrived back at my mom’s, Jonah said wanna take a bath? and so I went up to do his bath.  My mother followed me upstairs and when we were testing the water and getting the bubbles, Jonah stood looking at me in the mirror.  “What color is mama’s hair?” I asked him.

“Brown,” he answered.  Then my mom told me to crouch down, and she pointed to the top of my head.  “What color is this part of mama’s hair?” she asked.  “Tan,” he answered.  “What color?” my mom prompted again.

“Is grey,” he answered.  Mom thought that was a riot and a half, and she got Jonah laughing too. “You jerk!’ I yelled at her, though I couldn’t help looking at it all; I am really going grey.  Me.  Grey.  But I’m young, but I’m Gen X, we’re still the cool generation, right?

I dyed my hair last night.

After his bath, Jonah went to the living room to lie on the couch.  I covered him with two blankets and rubbed his back while he rested.  “Mama loves you, sweet angel,” I whispered in his ear.  He lifted his head up with a smile, then got up and went into my mom’s guest bedroom upstairs, where again I covered him up and he napped for a few minutes.

When he woke he seemed more animated and started to ask for car ride and Savannah (Andy’s parents’ dog) so it was time to go – for all of us.  I’d done nothing but sneeze and have allergy-ridden watery eyes the whole time.  I swear I am allergic to my mom’s cat or her house or something.  And so I said goodbye to my mom and sweet Boo and his daddy, and I returned home.

My mom made the most delicious ham with twice-baked potatoes, vegetables, rolls, and cheesecake.  Although and of course there was no sitting down to eat it all, she’d carefully packed bags full for both Andy and me…and when I did eat it, ’twas delicious!

I’ve heard since then that Boo is fine and doing well.  I’m in a peaceful state right now, spring birds sing-chatting outside my window, the house quiet, my work day just beginning.

It was a quiet, blessed, happy Easter.

## 41414

Love numbers.  Hate  math.  All dates this week are palindromes!

First there wasn’t anything to tell you.  One Saturday I went with my mom as usual but felt headache-sick on the way and migraine-sick by the time we arrived.  I walked in the door and went straight to big blue bed, mumbling something to my son and Andy on the way.  So that kind of sucked.

The only good part was when I heard Jonah say want mama? and a few moments later he came into the darkened bedroom, lay down on his side next to me, facing me, and slid his thumb into his mouth, his deep, innocent eyes looking straight into mine.  Then he reached out and ran his fingers through my hair, so gently I didn’t recognize the touch.

Other things happening seem mundane or oft-covered before.  I’m beginning to repeat myself.  My blog posts are no longer always the cathartic necessities they were when Jonah lived with us.

The aggression pendulum still swinging slightly.  Me forgetting my camera.  My mother and I arguing politics during the car rides back and forth.  Tuna fish sandwich week & turkey, ham, and cheese week.  The baths and Jonah’s latest favorite DVD or CD.  Don’t believe the hype.

He’s on school vacation this week.  Here’s hoping for the best and happiest Boo there can be.

## public enemy #1

Too black?  Jonah piped up from the backseat when Andy and I took him on this past Saturday morning’s car ride to transfer station.

I’d brought along a CD that my friend K gave to Boo for his 12th birthday, the soundtrack to the original Willie Wonka movie, and had just shown it to him.  “Wanna hear oompa oompa?” I asked him, because always there must be music.

Too black? was his answer.  I looked questioningly at Andy, who told me Jonah wants Public Enemy Number One, specifically their 1988 CD It Takes a Nation of Millions to Hold Us Back.

Evidently he has dubbed this CD Too Black, in much the same way that he dubbed Guster’s “Easy Wonderful” album Cranberry Guster.  Others retain their given titles - Diamonds & Pearls by Prince, for example, though that’s a mouthful for Boo.

Soon I realize why Jonah, King of Nomenclature, has chosen Too Black for the title of this CD.  It’s the second song on the CD, Bring the Noise,which starts out with “I’m too black, I’m too strong.”  My child has the most eclectic taste in music of any kid I know.  He has no shame, so he simply likes what he likes, whether it is a children’s song long outgrown by his neuro-typical peers or an old-school hip-hop gem from when his mama was in college.

He hasn’t been so great.  I didn’t want to write about it.  (If I had a nickel for every time I said that…)  The pendulum swung again, as pendulums are wont to do.

##### The period depends on the length of the pendulum and also on the amplitude of the oscillation. However, if the amplitude is small, the period is almost independent of the amplitude.

I started reading the whole page, all about pendulums.  I’m kind of following it, but then suddenly there’s all this gobbledy gook from math hell.

##### $ T = 2\pi \sqrt{L\over g} \left( 1+ \frac{1}{16}\theta_0^2 + \frac{11}{3072}\theta_0^4 + \cdots \right) ” /> The difference between this true period and the period for small swings (1) above is called the circular error.

I leave the page & shudder.

At any rate the pendulum has swung again into 2-person-takedown aggressions and what I call his “desperate OCD” – the constant requests, lists of things he may want at any given time spoken as questions, over and over.  Train?  Car ride?  White soda?  Grandma’s house? Train?  - with the sound of tears entering his voice – bagel?  Car ride?  Daddy?  Train? almost immediately followed by an aggression….an insufferable why can’t you understand me frustration…?

I’d missed a Saturday visit, too, for a 5-day escape down to the Gulf Coast of Florida to visit & stay with M’s parents, and just after that missed visit the pendulum began its swing.  I know better than to play association here because there is never a rhyme or reason (I’ve thought about paying attention to moon phases), but I felt guilty anyway, and I missed Boo something awful.

This time, though, the pendulum seems to have swung back to the “good side,” where we like to hold it, polish it shiny, beg it to stay.  Saturday’s public enemy visit was a good one overall, but for this relatively minor incident, all captured on film.  The idea was to take a little video of Boo bopping along to Public Enemy, and I don’t need to explain to you what happened next:

Other than that we had a cool visit.  There was sandwich, transfer station, train videos on the computer, hugs, Oompa Oompa, potato chips, hot dog, and even a special swim-up bar with two open bottles of white soda and juice (which he preferred to sip in turns, one, then the other).

Yes, we spoil him in  silly little ways.  He knows he can’t get away with that shit at school.

I even got a so exciting video of his daddy clipping his toenails.  I say so exciting half-kiddingly because as some of you with kids like Jonah know, clipping nails on a child with autism is often akin to alligator wrestling, usually with similar results.

And yes, it is World Autism Awareness Day.  By now I believe we’re all aware.

I want World Autism Action Day.

Now we need to build a better system, stronger schools, (and better pay) for the teachers, the caregivers, for not only aspies but also those affected by classic and severe autism too — especially the desperate lost exhausted at-the-end-of-the rope clinging to the edge  parents of these kids who beat them up, the parents of the kids who are lost to them, the parents who hurry through their days with therapies, doctor appointments, poop smears, constipation, unending screaming, and sometimes a dull acceptance followed by intense ennui followed by the strongest love there is.  I know these days, I’ve lived them.

My heart breaks for so many people I’ve met on the classic/severe autism group on Facebook.  And so, for all of them, and all of you out there barely hanging on, I say:

Suck it, autism.

## the day he didn’t swat

If I could choose my own personal  “Groundhog Day,”  I think one of the front-runners would be yesterday, the Ides of March — Saturday, March 15, 2014.

The Saturday before that, March 8th, was awesome too.  Jonah’s birthday was the day before and he’d already had two parties – one in his classroom and one at his residence.  My mom brought him three Happy Birthday balloons and I brought him a Buddha shirt I’d grown out of and a bunch of “octopi.”

He also got The Jungle Book DVD from Grandma – his new favorite movie (though he still adores Willie Wonka and the Chocolate Factory from 1971) and a whole bunch of birthday cupcakes.  In this 21 second video you can see him surreptitiously steal two more cupcakes whilst cramming one in his mouth — then he neatly arranges them on the plate just before the video ends.  Luckily there were more in the fridge.  I am narrating and I sound like a little kid:

But yesterday was even better.  Andy had taken him the night before, as he often does on Friday nights, and Jonah had been really good and cooperative for him.   I spoke on the phone with him that evening and Jonah used one of his full sentences:  I want pepperoni please.  He even told me he loved me without me saying it first.  I love you mama.

So when my mom and I arrived for our visit, we were in a hopeful mood, anticipating a happy time.  Jonah was excited but not super screechy or manic, as he can sometimes be.    He sat at the table with us for quite some time, eating his “tune-fish sandwich” and chips with a juice box, then he requested car ride.

There’s a loop Andy and I take on the car ride, to the recycling center (transfer station) and around by the river before going back to his apartment.  Usually Jonah is in the back relentlessly requesting music on?! which always means “turn it up!” but this day he was content with the volume.  Usually Jonah wants more car ride, meaning two loops, but this day he was content with one.  Even more amazingly, at one point I turned to see how he was doing in the back; he smiled and cocked one hand back as if to hit me.  I caught my breath and waited for what he used to call swat, for some reason not stopping him.  When his hand came down he simply touched my head, spreading his fingers to comb through my hair, again and again.  I nearly cried – he has never, ever, made a motion to hit me and touched me gently instead.

When we returned to the apartment he wanted bath, and went to the toilet first, crouching on it in his weird little way, both feet planted on the seat with his skinny little butt hanging down into the bowl.  After that he had fun in the bath, splashing around a little but quite pleased just to get clean and play with one of his octopus pals and the bubbles, and he even refrained from splashing water all over the floor and walls – a rare thing indeed.

In typical Jonah fashion he sprung from the tub and ran wet into the bedroom, jumping on the big blue bed.  I chased him with a towel and captured him in my arms, drying him off while he squirmed and giggled.  Then he got under the covers and put his head on a pillow, asking for quiet time.  So I climbed under the covers about two feet away on another pillow, and we faced each other, both of us smiling.

He got this little cat-ate-the-canary look on his face and reached his arm out to try to fish down my shirt and cop a feel, but I just laughed and tickled his underarm, making him withdraw the arm, giggling.  No mama boobie, he said, as if reciting something he’d learned and repeated many, many times.  That’s right, I told him.  No touching mama’s boobie.  But then it became a game, and I played along, tickling him every time his arm reached out to me.  Finally he sighed and, with a small smile, tucked his thumb into his mouth and hooked his pointer finger over his nose.  I imitated him (God how I loved sucking my thumb when I was little) and our eyes met, both of us grinning behind our thumbs.

He doesn’t suck his thumb that much anymore, though, and only did so for a few moments before reaching his hand out to me once more.  I thought he wanted to play our little tickle game again but this time he repeated what he’d done in the car -  gently he touched my hair, finger-combing its length in different places and messing it up a little.

Very good boy, he said.

Yes, Jonah.  Yes, you are such a sweet, 12-year-old, very good boy.

He was dry enough then and I handed him his clothes to put on – something he can do all by himself now, though he will often ask I need help please with socks and shoes.  He even wanted a certain shirt – the Willie Wonka one my friend K had given him for Christmas.  We went in the other room and he asked for The Jungle Book, which we gladly put on the DVD for him.  Then we danced around to I Wanna Be Like You, spinning, holding hands, and laughing.

After that he asked for train, and I knew he wanted to watch trains on the computer.  Thanks to all the railfanners in the world; they make very long videos comprised entirely of different trains coming and going.  There are an endless supply of these videos on You Tube, so Jonah tells me which one he wants – pointing and saying I want that one please (he’s just going by the photo), and I put it on.

This is a great discovery, as he will sit transfixed for 20 or 30 minutes watching the thrill of the train signal, the lights and bells, the striped gate moving down into its horizontal position, the approach and increasing sound of the engine, the cars whizzing past (usually decorated with graffiti), the caboose growing ever smaller as it moves away, and the striped gate going back up into stillness — only to be followed by another train, and another train, and yet another…a virtual parade of locomotive ecstasy into which Jonah happily disappears.

It was the first time since we brought him to Anderson on that hot day in August 2011 that I really, really wanted to take him back home.  I didn’t cry when we left but I could have easily done so, tears of joy and tears of longing.  I know in my heart this could just be a swing of the pendulum, though the swings are growing slower and smaller, like those little silver-ball motion machines on desks of executives that tap tap tap until the tapping becomes imperceptible and finally stops altogether.  I also know he is where he is supposed to be, the best place for him to continue on the path to independence, learning appropriate behaviors, and growing into his full potential with people who are educated and dedicated to helping him do just that.

I don’t want to think about it too much aside from feeling an enormous gratitude for the Anderson School and its staff — for Jonah’s daddy, for my mother, for all the persistence and patience and learning and love Jonah has received since we broke our hearts in two and left him behind to live with strangers… trusting, praying for them to love him, pleading with divinity to watch over him.

And now I have nothing to say but thank you, and nothing to remember about this visit but joy.  It is an astounding, beautiful thing.  My sweet little Boo.  My baby-est angel.  I love him more than anything in this world.

Thank you.

## light of the love that i found

Sometimes when I don’t blog for a while it’s because of a superstitious belief:  because everything is going well with Boo, I mustn’t write about it because it will break the streak of good, of happy, of laughter and kisses and hugs and learning.

Of course it is just superstition, but when you’re in my position you will cave to anything that works, or seems to work.  And that’s not the only reason anyway.  Without giving too much information about me, I had a hard February.  The kind of hard where I called a new psychiatrist for counseling and to adjust my meds and I called my OBGYN to figure out what the hell kind of hormonal changes are happening to me at the age of 44 1/2 to make me suicidal one day and joyful the next.  Menopause?  I already have osteoporosis and arthritis so why the hell not.

This will not do.

And so in the meantime I meditate and I pray and I work and I try to get outside – it’s so easy to hibernate most days when it is so damn cold and I work from home.  Some weeks the only time I go outside at all is to go visit Boo.

I didn’t even go to the advocacy thing I spoke about in my last post.  I was about as depressed as I get that day accompanied by a migraine that slammed me down into puking and crying.   Weakness.  My mind and my body betray me all the time, just when I’m ramped up to DO SOMETHING about all the low-functioning kids and their situations, just like mine before we were able to place Jonah at the Anderson Center for Autism.

And so for the first time in a month -  Two months?  – his school called me on Monday AND Tuesday to tell me that Jonah had gotten aggressive to the point that he needed “a two-person take-down” — meaning they’d had to subdue him physically.  Of course they know how to do it without harming the child, but someone always gets hurt in the process – usually a teacher or caregiver.  I suppose that’s better than another child, at least.

When I wrote to his room head teacher she told me she thinks it was because she was out sick on Monday, and on Tuesday there was a new child in the classroom.  Jonah does not do well at all with change.   Yet sometimes, as has happened many times in the past, there is no antecedent at all and we are left to wonder what the hell made him “flip out” for no reason we can discern.

It bursts my bubble again and again, and the longer Boo goes doing really well between aggressions, the bubble bursting hurts all the more.  Then again when I compare it to 3 years ago or so, I have to remind myself that it used to be 8-12 aggressions a DAY.  So I get out my trusty old bubble wand, blow some more bubbles, and hope.

He has been happy when my mom and I visit on Saturdays, dancing and singing and eating his lunch, taking his bath, requesting his Oompa Oompa, shrieking with joy, asking for car rides.  It’s our routine and he enjoys it.

Then I found a group on Facebook, thanks to an online friend, for people dealing with children who have “classic autism/severe autism.”  I expected the usual – a bunch of people arguing about diets and treatments and drugs, parents insisting “if you just do this you can cure your child of autism,” etc.  I was never so wrong in my life.  It was a light of love that I found — a place where you can say what is happening to you and your child without fear of judgement or blame.  A place where everyone affirms one another, cheers for the accomplishments and offers empathy for the disasters.  It is the best place with the best people I have ever found since Jonah was diagnosed, and I wish I’d found it long ago.

Because Asperger’s ain’t what we’re dealing with and yet that’s all anyone talks about in other groups, it always seems.  Parents bragging about their accomplishments, lifting their child(ren) out and away from the autism and into social groups and “regular” schools and how they take their child everywhere with them; that’s why their kids are doing so much better, don’t we see that?

I hate that shit.  I could never take Jonah anywhere with  me (in public) since the time he was a little baby, without facing stares and glares and the whole rest of it – my screaming, crying, unhappy Boo hating the car seat carrier, unable to participate in the little “music and movement” classes I’d enrolled us in before he was diagnosed.  Then, later, attacking random people in the mall, at the “family” restaurant, at parks and playgrounds.  And always the ugly glances, always the eyes boring into mine, the message loud and clear:  God what a bad parent she must be.  What a brat she’s got….until I prayed for winter to give us the perfect excuse to hibernate inside.

This new group is a cyber-world where I cry for others’ children and they cry for mine.  Where we offer each other suggestions and support but not any of that “I’m right and you’re wrong” bullshit.  Where we read one another’s stories, watch heartbreaking or joyful snippets of video, share blog posts, hugs, prayers, ideas, and love.   Where no one has to feel alone, or persecuted, or guilty.

I am so grateful to have found them, my fellow aliens on this planet of normalcy, so many of them suffering worse than I ever did, with other children to protect and deal with, often more than one on the spectrum, sometimes facing heart operations or other serious medical problems on top of all the other stresses.  God bless them all.  I don’t know how they do it but I do know how they do it — because life isn’t offering any of them a choice — you do it because you love your child(ren) beyond reason and would do anything to help them when they are suffering.

And so now I am no longer alone in this, not at all, not ever.

Yesterday when my mom and I visited, Jonah was happier than ever.  Laughing, giggling, smiling, lovey.  He pointed to the computer and asked for train and I put on an hour long video from YouTube with endless trains coming and going, coming and going, made by some rail fanner adult.  Boo sat mesmerized, first on my lap and then alone in the computer chair, alternately single-mindedly catching the visuals of the movement of the trains with a dumbstruck look on his face and smiling at the approach or departure of the train.  “Bye bye train!” I say, every time a train rounds a corner and disappears, only to be replaced with another approaching train.  Boo smiles, giggles, eagerly anticipating the next train.  Over and over.  Train after train.  When I had him on my lap I breathed him in at the back of his neck, gave him little mama kisses all over his shoulders, rubbed his back, whispered “mama loves you so much” into his ears.  I drink him up every time I see him like this.

And, on his car ride, as happy as the song playing on the radio:  Happy by Pharrell Williams.

My mom and I left in a satisfied state of happy ourselves, both of us saying “thank God” as we get into the car to drive away from Andy’s apartment, where he and Jonah will have “quiet time” in the big blue bed, just lying together, and sometimes Jonah will take a nap.

Then, later, the daily phone call from Andy, always around 8:08pm, always just after he has called Jonah’s residence house to see how Jonah did that evening – on Saturdays, particularly, after Andy has dropped him back off.  The news wasn’t good this day.  Always Jonah cries a little and maybe tantrums as he is being brought back to his residence.  He likes his residence and has his favorite people there but still leaving daddy behind is hard for him.

This night his favorite staff members were not there, and he was angry, and did not want his dinner.  They have other foods to offer the kids and he asked for a bagel.  I want bagel please? he kept asking, over and over even after he’d been given one.  His voice gets more desperate and he cycles through a million things.  Bath?  Car ride?  Train?  Bagel?  Bagel?  Bagel? and he ramps up even more, torn between a mysterious desperation and an OCD-like anger and sadness.

Eventually he went into his room and was quiet for a while.  Then one caregiver heard banging and crashing, and when she went into his room he was kicking the walls and throwing items around, frenzied with the sadness/anger again.  When she gently asked him what was wrong he flung himself at her, attacking her, and eventually needing 3 people to get him under control.  Another bubble burst.

God forgive me but I am grateful I don’t have to see it, to be the one attacked anymore, to have the freedom of being removed from it all, physically if not emotionally.

I have gone from this scratched-up, bruised, beaten down person

to this person

in three years.

I can’t believe the difference.

And Jonah has gone from this child:

to this one:

I have to remember that despite the setbacks, in general we are both so much better, so happier.

And if I am upset or confused or angry or sad, I know I now can reach out to my new peeps online in the Facebook group, and there will be understanding, there will be light.

I will try to post more often, superstition be damned…

## you’ve come a long way, baby

I’ve been sick, finally feeling a little better.  There are major changes in my house.  Almost overnight M decided he’d had enough of being a couch potato.  He joined a gym and goes every day at 5am.  He bought all kinds of vegetables, fruit, wheat germ, seltzer, salmon, low-fat milk, nuts and berries and healthy shit.  So I’m trying to get on board to encourage and support him by exercising, doing weights, and eating well, but I still sneak a coke once a day or two.  Soda…it’s my worst vice.  How funny is that?  I don’t even drink alcohol, or even eat much meat anymore.

I was pretty sick on Saturday when I drove my mom down to first get her car from the transmission shop in Kingston and then to Andy’s.  When we arrived at the shop, her car was all fixed and they told her she has a zero balance.  Evidently someone paid the \$1800 bill for her. A stranger?  A rich relative?  She doesn’t know and nobody will tell her.  How’s that for an awesome start to the day?  Needless to say my mom was in a happy state of shock when we got to Andy’s.

I’d seen Jonah two days the week before, for two different doc appointments two days apart…his juvenile arthritis doc and his eye specialist (the one who did his operation).  Both times I met the incredibly awesome caregivers from Anderson School who transport the children to their doc appointments.   Every single one of them is amazing, even when they must be so very tired from getting up at the crack of dawn to gather Jonah and drive him 90 minutes to an 8am doctor appointment.

Not only was Jonah a little angel for both appointments, but we get great news from both doctors too.  His arthritis has mitigated and the pressure in both his eyes is nice and low – 12 in one eye and 17 in the other.  I asked the eye doc if his left eye had any sight at all and she said not really, he can just see shadows, which I knew but couldn’t help asking again.  Now we just protect that right eye with everything we’ve got.

Happy Boo

When we arrived at Andy’s apartment Jonah was good again…lovey and eager to take my mom’s soft case, unzip it, and put all the sandwiches, bags of chips, and drinks away, opening cabinets and the fridge and systematically putting everything in its place.  He even did the dishes (well, a coffee cup and a plate) with aplomb.

diligently working

He has come so far and done so much in the 2 1/2 years he’s been living and learning at the Anderson School for Autism.  He is more and more independent every day, with fewer aggressions, and I couldn’t be happier or prouder or more grateful.   I can’t believe he is almost 12.

I was contacted recently by a mom who is in a similar situation we were in, and I promised to help her in any way I can.  The bottom line is there needs to be a place where children who need residential placement can go until there is an opening somewhere.  Without it families are torn apart (the woman who contacted me had to move her two other children to a relative’s house for their safety).  It is not a matter of convenience.  It is a matter of sanity.  Of danger.  Of real risk of injury or even death, especially if the aggressive child is big, strong, or, like Jonah, simply out of control – smashing TVs, windows, and hitting, kicking, biting…

It is a disgusting thing when the most vulnerable population becomes also dangerous, and there is nowhere to turn for help.  Not the police, not the local psych centers, not the ER.  Nowhere.

I promised long ago (and in this blog) that I would advocate someday, and so here I go.  There is an advocacy day in downtown Albany on the 11th and I will be there along with people from Anderson and other concerned nonprofits, fighting for COLA (cost of living adjustment) which has been denied these important nonprofits for 6 years.  Then I am going to make  appointments with my assemblyman and senator.  Hopefully I can get some other moms and someone from Anderson to come with me, and we can make some change happen.  How, I don’t know.  I need to research.  I need to learn how these things work.   And I need to control my temper, because this REALLY pisses me off.

On a terrible note, I was shocked and saddened to hear of Philip Seymour Hoffman‘s death-by-heroin.  Good God, what a waste of a fantastic actor and father and, evidently, a really cool guy, his rumored temper/testiness notwithstanding.  Heroin is the devil.  The needle and the damage done.  I wish these actors and musicians and everyone could learn from those who have gone before them.  I guess nobody thinks it can happen to them.

But now that Boo is doing better I can focus on this work, on my work with Modest Needs (I am learning to be a Grant Writer), and my work with the Interfaith Partnership for the Homeless.  Not to mention learning to play guitar, and getting healthier and stronger and smarter and happier.

## at least we got to see him first

My mom came to pick me up yesterday morning, just like every Saturday.

(We switch cars every week but she likes to drive either way because, she says, my driving makes her nervous.  I’ll not waste time defending my driving skills; suffice it to say I feel the same way about her driving.  I capitulate and let her drive because we argue enough as it is…it’s just one less thing).

The visit with Jonah was cute and fun, punctuated by a medium meltdown in the car, the kind where he squishes himself way down in the car harness and kicks Andy over and over with his strong, long legs, necessitating pulling the car over immediately.

Take our coffees out of the car, Andy says, and get out.  I know he is protecting all of us, especially me, from injury.  This is now routine procedure.

I get out of the car and it is very cold and snowing – the kind of snow where it all clusters together, forming planets of snowflakes, drifting through a universe of cold.  Andy is now in the backseat with Jonah, calming him, still telling me to keep my distance.  And so I step back .

My eyes fill just a bit with tears this day, and I lift my head to the sky to stop them.  Through a blur I see the planets of snowflakes, layer upon layer upon layer falling ad infinitum, and for a moment I stay on Planet Snow with whole frozen moons landing on my face and eyelashes because I don’t want to hear or see Jonah crying, squirming, pleading all done?  all done? when in actuality he is not all done at all, not usually, not hardly ever.

He hits or kicks right after declaring he’s all done.  It takes a while to get to the real all done.

But I digress.  And dramatize.

It was a small incident, comparatively, and we returned to the apartment, listening to Cranberry Guster kinda loud (at Jonah’s demand) all the way back.

Just before we arrived at the apartment Jonah asked for Thomas? which is a rare request, but one not unexpected, seeing as how Thomas and all his friends are pieces of train.

What do two trains say?  He asks again.  Choo Choo!  Choo Choo!  Andy says.

Jonah’s loves this.  Two trains say choo choo twice.  That’s right, Boo.

A few days ago someone on twitter asked me if I would participate in a survey-study of parents of kids with autism.  The survey questioned:  When your autistic child graduates high school, what are your expectations for his or her future?

Jonah is (nearly) twelve, and two trains says choo choo, choo choo.  Does that answer your question?

They are working with him in school now using an iPad.  It’s only been a few days but it’ll be interesting to hear how he’s doing on it.  I wouldn’t be surprised if he can read a little, even with just his right eye.

The autism spotlight always seems to shine on high-functioning kids (or kids with Aspergers), almost as though there were no other manifestation of autism….or as if any other kind were something unpleasant to think of – and eventually, maybe, something to be identified in the womb, so women can choose not to carry a baby like Boo to term – just as 50% or more of women carrying a child with Down’s Syndrome choose to terminate today. (I got that percentage from a few different articles, none of which said the figure was less than 50%).

These are just things I’ve been thinking about lately.  Me and my happy musings.  I can’t and won’t judge.

Zoom back to the apartment, at Jonah’s delight upon greeting Thomas – at distributing the items in my mother’s cooler to the cabinets and fridge, very neatly – at sitting at the table to eat and asking for what he wants, at throwing away his garbage when he’s all done.

Of course he also will take my full drink and, in his little business-like way, march over to place it on the refrigerator shelf, returning to collect grandma’s full drink as well.  And he will run shrieking and dripping from the tub to turn the volume up while Cake plays Meanwhile Rick James.  Then, laughing, he’ll run into Andy’s room, jumping around, screeching with happiness on the big blue bed until we can catch him with a towel and hand him his clothes to get dressed.

The we dance, Jonah and I, to Guster’s What You Wish For and we jump around giggling and turning in circles, my hands and his clutched and moving together, swinging our arms to the rhythm.  It’s worth everything to me to see him like this.  Collapsing, I clutch him to me and shower his face and hair with mama kisses.

My mother worried about the snow, so we left a little early.  No sooner had we gone through the tollbooth to get on the thruway (but not close enough to actually get on the thruway), her Taurus loses not its rev but any forward or backward motion.  This is where I could make this blog post very very long, but I won’t bore you with all the details.

Suffice it so say her car is now at a transmission service garage in Kingston, and M came down from Albany to pick my mom and I up and drive us home.  I just kept thinking thank God Jonah wasn’t with us.

The only other remarkable note is that M and I are becoming Healthy People, the kind who exercise (he even goes to the gym nearly every day now) and eat things like vegetables and fruit and beans and nuts and just a little free range chicken.   I even ran into my favorite doctor at Trader Joe’s.  We’ll see how long it all lasts, but at least we are doing it now.  I mostly jog in front of the TV or run up and down the stairs to the basement, and do my hand weights.  But I already feel the endorphins and the tightening in my core.  Comes a time you can’t depend on Youth anymore to forgive your bad habits.

And at least we got to see Jonah before my mom’s transition blew.

Follow

### Follow “Normal is a Dryer Setting”

Get every new post delivered to your Inbox.

Join 161 other followers