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something fishy

May 19, 2011 by The Never Normal

About 3 or 4 weeks ago I decided to order some Fish Oil chewables for Jonah (100mg a day).  I’d read some articles like this one saying most people don’t eat enough omega-3 fatty oils anyway, and there may be some basis to the theory that the Fish Oil supplements may alleviate symptoms of autism: (from http://autism.healingthresholds.com/)

Some scientists have proposed that autism, dyslexia, attention-deficit/hyperactivity disorder (ADHD) and dyspraxia are a related group of neurodevelopmental disorders that are caused by problems in the metabolism of EFAs (3, 12, 13). The idea is that, for unknown reasons, the brains and bodies of individuals with autism and related disorders have problems converting the EFAs from foods into the forms that are necessary for many biochemical reactions (7). In addition, omega-3 fatty acids seem to be lower in individuals with autism than in others (9, 14).

Both of the omega-3 fatty acids DHA and EPA have been found to affect many aspects brain function (1, 3). Specifically, changing the amount of DHA and EPA in the diet alters the amounts of certain critical genes in the brain, at least in rats (15). In addition, one study found that giving animals a diet with a ratio of omega-6 to omega-3 EFAs of about 1:4 improved experimental measures of cognition in the animals (1). Finally, mood and behavior problems in humans have been linked to a lack of omega-3 EFAs in the diet.

So I figured 100mg a day is innocuous enough (esp. since the kids in the studies cited were given 1-3 grams a day) and may even help his growing brain a little, and so he’s been chewing one daily along with the Risperdal ever since.

Then, on Monday and Tuesday, miracle of miracles, Jonah had zero aggressions at school.  This hasn’t happened in months – maybe a year.  I’ve lost count.  Of course I hear the words of doc Reider echoing in my head:

“Correlation doesn’t necessarily imply causation,” and I know intellectually that 100mg of Fish Oil chewables for 3 weeks has not caused this two-day no-aggression anomaly, but the mother in me couldn’t help but hope, just a little, that I’d hit on something.

Then, on Wednesday, I went to Jonah’s CSE meeting at Wildwood.  I always hear stories from autism moms online whose CSE meeting experiences play out like horror stories, where parents feel ganged up on and must advocate, fight, hell, even hire an attorney to be present – to ensure their child gets the appropriate supports and services.

Maybe our experience was not like this because Jonah is undoubtedly autistic – it isn’t as if he is on any kind of borderline between autism and neurotypical (NT) – and now he is so obviously in need of residential educational placement.  Maybe we’re lucky to have such an enlightened team of teachers and special education school district administrators.  For whatever the reason, I don’t dread the meetings and have never come out of one feeling like Jonah wasn’t given every possible support, service, and consideration.

One thing I learned is we need to keep Jonah on the waiting lists of all the schools, so I called both Anderson and Tradewinds and asked them to put him back on their lists.  I guess I was wrong about the fact that you can’t keep your child on all the lists.

The thing is, November is a long way off, with 3 weeks of time at the end of August and beginning of September between the summer program and school starting up again.  Tradewinds or Anderson could have a spot before that 3-week hell descends upon Andy and me (especially Andy), and since we liked all 3 schools, we decided to take the first spot that has an opening.

I think.

Once again, my time line is gone.  Shit, I didn’t like having it, anyway.

At any rate, the folks from The Anderson School are thankfully willing to come and observe/evaluate Jonah in his school environment, and it’s going to happen on June 14th which is, among other things,

  • Boy George‘s birthday
  • my Aunt P’s birthday (I call her Tree-Shee)
  • Flag Day
  • and the day I found out I was pregnant with Jonah

Not that any of that necessarily means anything, but I still like that it’s happening on June 14th.  And so far as my Fish Oil theory is concerned, Jonah did only have one aggression both yesterday and today, but they were each “very high intensity” according to the dreaded log book, meaning they are aggressions requiring two or three staff members to remove him from the classroom and into the “safe room.”

The residential schools don’t have safe rooms.  They have the staff and capability to handle whatever is happening right then and there, ostensibly.  I don’t know.  One even toilet trains the kids immediately.  It’s all done with ABA, something I was never really on board with, but now of course I question my original stance.  All the residential schools we’ve toured use it.  It works.  All the kids looked happy, the staff dedicated and engaged.  I’m not looking for Jonah to be Einstein or Temple Grandin;  I just want him to be happy, as independent as possible, and able to learn and grow.

My problem with ABA was formulated in 2006, when Jonah was 4.   I think it was born from the hope/assumption that Jonah was going to end up higher functioning by now than he turned out to be (and certainly not aggressive at all).   I thought, if taught through ABA, he’d just be a robot…trained to act, speak, and look normal.  It seemed horrifying to me.  Something Orwellian.  But I had the confidence of a woman whose child, though autistic, was at the very least not a danger to himself or others.  He’d had every modern advantage a child with autism can get.

After all, doc Reider had noticed something was up with Jonah when he was just 6 or 8 weeks old:  our boy was staring at lights, not faces.   (In our infinite ignorance, Andy and I had already nicknamed him “Moth Boy.”)

So we stayed on top of the situation, got him early intervention before he was 19 months old, and enrolled in Wildwood School full-time just before his third birthday.  We thought we were doing the right thing.  If we had got on board with full-time ABA all along, would he be better than he is today?  I don’t know.  Who knows anything when it comes to autism?

If you’ve met one kid with autism, you’ve met one kid with autism.

It’s a puzzle inside a mystery inside an enigma inside a matrix of love, pain, frustration, guilt, helplessness and anger; amazement and joy.  You take wrong turns and make mistakes.  You come to question everything.

Autism is the agnosticism of impairments;

you have to be okay with “I don’t know.”

And so we sally forth.  Andy’s sick with something…the flu?  Walking pneumonia?  He managed to work today.  And I’m tired.  Lots of meetings today, a ton to do at work.

Time for Match Game.

Posted in Anderson School, autism, behavior, doctor, placement, Springbrook, The Center for Discovery, Tradewinds, Uncategorized, Wildwood | Tagged , , , , , | 6 Comments »

please & thank you

May 15, 2011 by The Never Normal

My only remaining prayers are please and thank you.

I don’t know what else to pray.  I don’t know what else to say.  I want to stay in a place of gratitude.  Jonah was a good boy for M and me when we took him today; he enjoyed car ride in the rain, and we took a few very cool grey-skied foggy droplet pictures:

a dozen or so goslings with their mom and dad…

we’re not sure why the rooster crossed the road

the woods were like dream visions.

We even risked the wrath of Jonah to turn around and zoom in on the great blue heron.  You don’t see those every day.

The truth is I’m just trying to keep it together.  I’m phone-shy and out-in-public shy.  I don’t much want to talk to anyone, even people I love.  I like silence, and listening to Guster and my new Paul Simon CD.  At work I listen to classical music all day.  I eat sporadically and my sleep is full of dreams.  I’m reading, but slowly, a chapter at a time.  Practically the only thing I can stand to watch on TV is Match Game, with Charles Nelson Riley’s campy 70’s antics.

Oh, and I write some, and make endless bead necklaces.  I used to complain I have ‘no countdown’ with Jonah and the residential schools; I hated that I didn’t know when Jonah would have to go away.   Well now I know, and now I complain about that.  Can I stop fucking complaining?

May, June, July, August, September, October, November…

This time next year I will be, in a lot of ways, no longer playing a mother-role.   It’s not like some of the other families, who turn a great deal more attention to their other kids.  There are no other kids.  I am relieved and aggrieved by this, just as everything I feel or say or think or do feels paradoxical these days.

I will not be bathing my son, helping him put on his shoes & coat, holding him, riding him to see train or red barn or grandma.  Andy will not be putting him on or off the bus, giving him wagon rides, making sure he eats healthily enough, has his teeth brushed, and is kissed goodnight.

Jonah will not be bruising, kicking, scratching, hitting, biting us, or grabbing & mangling our glasses and faces anymore.  He will be in others’ care.  Experts’ care.  He will learn and grow and get better.

I guess I will probably see my son once a week for a few hours.  Will he know I am his mama?

Will he know I will always be his mama?

It’s as much of a mind-trip as it is the only thing left to do.  It’s time to try to begin to attempt to absorb it all.  I don’t want to.  I don’t want to.  I can’t.  I have to.  I’d rather they take him next week, or never.  It’s too long to wait.  It’s not long enough.  Please don’t take him.  Please take him.

Please, please love him.

Posted in autism, placement, Springbrook, Uncategorized | Tagged , , | 5 Comments »

this is how it feels to have a broken heart

May 13, 2011 by The Never Normal

Springbrook called the day after we toured The Anderson Center for Autism and told me they were going to accept Jonah, in one of their brand new residences, most likely in November.  We took the placement; you can’t just stay on all the lists until the first placement comes up, so I had to call Tradewinds and The Anderson School and tell them to take Jonah off their lists.

Now it’s real, and I am a wreck.  I have researched and taken notes and gone into a state of mind where it is all objective – it was simply a project – albeit a difficult project – on which to work very hard.

Now the project is over and I am back in the subjective and it is real.

It is real and I have a countdown; it feels like the doomsday clock is ticking and I feel very very dangerously, frighteningly, frustratingly, ridiculously close to the day I admitted myself into Four Winds.

Somehow I have been shocked back into reality, where all this is really happening.  I really did fuck up my marriage and I really will give my son away soon and I really do feel like I do not belong in this world.

I have taken extra meds and I’ve got to be able to keep my shit together and get a lot done today.  I am thankful it is Friday so I can crawl home and cry when this day is over.  Jonah had 8 hard-core aggressions at school yesterday; it is not a matter of whether we are doing the right thing but rather how to actually do it.  My father has not seen Jonah since the day before Thanksgiving and it is because he is afraid of his grandson.

And now, suddenly, I have this near-constant tinny ringing in my ears and vertigo.  When I reach for something I miss it by an inch.  When I try to pour something I spill it.  I am spelling all my words wrong and have to go back and edit this over and over.  

I have a strange sense of not even being in my body. 

“We’ve colored in the lines and followed all the signs;
Fought a war till the war was over…
Said you’d never be the kind with an ordinary life –
Now this how it feels to have a broken heart

Look at the mess we made
Now we stopped and we say what we always say
And then you make the great escape

With every year you’ll come to regret it…“

~Guster

Posted in Anderson School, autism, Springbrook | Tagged , , , , | 6 Comments »

buddha’s tulip

May 10, 2011 by The Never Normal

For a few years I’ve been meaning to plant tulip bulbs in our yard, and last fall i finally did – all along the front of the house and in a circle around the lamp post in the front.  But I do not have a green thumb nor do I know much about planting tulips – how deep to plant them, which end up, all that.  So of the two dozen or so I planted, only four came up…three multi-melon-colored ones in the circle around the lamp post,

and just one in front of the house, as if summoned by the Buddha my cousin D gave me.

Along the whole length of the front of our house, only one soft-red tulip stood loyally beside the Buddha.

And it bloomed before the others, enhancing the visual impression even more.  However, Buddha’s tulip died first as well.

Is there a moral to that story?   I”m going to call it a lesson in impermanence.  Just about everything is with Siddhartha.

In following the theme of our parable, Andy and I toured The Anderson Center for Autism today, accompanied (and driven there and back – thank you!)  by two of the folk from Wildwood.  Andy and I loved the place.  I took about fifty pictures, even of the bathrooms (with bathtubs!  Jonah’s favorite!) and toilet stalls to show my immaculate mother who’s terrified these “homes” are urine-stinking, dim institutions like the one where Salieri moans and raves in Amadeus.

I tell you it all looked brand new.   The school, the houses, the whole place.  I think the oldest building was built in the year 2000.

The kids we saw looked happy and the staff looked energized.  They have a pool and every kid almost always gets his/her own room; there’s art & music & outings, a special building with rooms you can reserve to visit with your child, an auditorium, gymnasium, 3 playgrounds, and on and on.  When they were building the school itself they even asked adults with autism to give them guidance in designing hallways and choosing colors.

Of course I cried at one point but I am getting better at getting through it and I do hope they can take him.  I believe he can get better at a place like this.  Now we have to wait to see if they will evaluate him, and if they will we have to wait to see what they say, and all the rest of the waiting game we’re already playing with Springbrook and Tradewinds.

I could go on about it all but I’m tired.  I’m always tired and drained (or maybe strained) emotionally every time we ride back from one of the tours; I do everything I can to avoid thinking about what it is that we are doing.

I chat and laugh with the folks from Wildwood, talk about how beautiful that area is – near Rhinebrook, Red Hook, not far from Kingston or Woodstock.  “It reminds me of Saratoga,” I am saying.  This is all so surreal, I am thinking.

To stop the surreal from sifting its way too deep into my head, I watch out the windows instead at the calm blue sky, the gentle sunshine – the new green leaves and almost-past-full-bloomed tulips – – like Buddha’s tulip.

Impermanence.

Posted in Anderson School, autism, Springbrook, Tradewinds, Wildwood | Tagged , , | 5 Comments »

groundhog day

May 8, 2011 by The Never Normal

Phil Connors:  Well, what if there is no tomorrow? There wasn’t one today.  ~ from the movie Groundhog Day

This Mother’s Day was an amalgam of a whole lot of days with Jonah Russell, all rolled into one.  M and I had him for four hours.  There was grandma, the woods, waterfall, peanut butter roll, trains, kicking, hitting the car window, requests for black soda and Burger King and Cranberry Guster.  Jonah even scratched me all to hell.  He’d requested mama to put him in his car seat, then he grabbed at my face and dug in tight with his little claws (time to cut his nails).  My resulting look was puffier, more painful, and bloodier than usual, and when I dropped him back home I was not sorry to go.

He’s on a new med again – Zyprexa, while continuing with the Risperdal.  It’s only been a couple of days but so far there isn’t any improvement.  As usual.  Round and round we go….one day mushing into the next, a routine of events that makes me so tired I could sleep for 100 years.

It’s another of those days when I will put up pictures instead of expressing useless self-pity.  My face will heal, and Jonah did have some happy times today, despite his on-again off-again agitation.

He’d said “bye bye mama” so I watched from the top of the hill.

Then I came down with him, slowly, as he was playing near & in the water…


…only to be scared off by splashes and a rock-toss.  I was far enough away to miss the rocks but not the splashes…

In the car he didn’t want his picture taken…

…then he did.

I hope there’s a tomorrow

tomorrow.

P.S.  I still don’t know the identity of the flower-sender.  My bet’s on a miracle right now, ’cause that’s the most fun.

P.P.S. If you click on that box on the right hand side that says “We’re on the Fence” it will mean that I get one “like” and might get more readers.  Click only if you want to!

Posted in autism, behavior, grandma | Tagged , , , , | 3 Comments »

my 100th post mother’s day mystery

May 5, 2011 by The Never Normal

Today, Jonah brought home some Mother’s Day presents he’d made for me at school (3 different cards/posters) and a pink, stapled package.  Inside the package was a pretty orange geranium (?) in a little ceramic pot- it made me grin.  Thank you, Wildwood.  🙂

Then when I got home to my apartment, M told me a box had come for me from 1-800-flowers. I could tell it wasn’t from him because he was just as curious as I was.   A Mother’s Day gift, I thought with a smile.  Likely from my mom, or my dad – or even Andy, even though he’d already told me that Jonah’s gifts from school were all I was getting for Mother’s Day. 

 

I opened the pretty multi-colored bouquet and arranged the flowers in the vase they came in, and then I found the note:

Dear Momma,

Thank you for all that you do for me.  Thank you for train rides, moneycoin, waterfalls, trips to Grandma’s, peanutbutterrolls and too many other great things you do for me (and with me) to mention!  You are the best momma any kid could ask for and I love you soooo much! All done.

– Love, Jonah Boo


After I stopped crying my happy tears, I tried to figure out who could have sent it.  Who knows my address now?  Who has the sense of humor to put “all done” at the end of the card?  Who did this wonderful thing for me?  Andy says it wasn’t him.  M denies it, as does D, who watches him most.  And neither my mom nor my dad would write that.  My friends?  K or H?  P or Mx?  Maybe.  Martie?  Someone from 4 Winds?  from Wildwood?  Someone from work?  Someone I used to work with? A random reader? Hmmmmmm.

I kind of want to know who did this and I kind of want to believe in the mystery of it – to allow it to be from Jonah – to give it his voice, to have it be like Santa Claus is when you’re a child…or something from an elf, a faerie.  Or from one of my very best friends who’ve died – Gina, or Jennifer-Sanx.  Something impossible, yet true.  It’s all so right up my alley.

In one of my favorite children’s books, poor protagonist Sara Crewe receives gifts and has no idea where they came from.  Every day new gifts appear to help her make it through desperate, lonely days.  She doesn’t wish to force the identity of the giver if that person wishes to keep him/herself a secret, but she yearns to thank her benefactor.  So she gets the idea one day to write the person a letter and leave it for the next time s/he came.  The letter says, in part,

“I want to thank you for being so kind to me – so heavenly kind – and making everything like a fairy story.  I am so grateful to you, and I am so happy…”

Like Sara Crewe, I say thank you.  Somehow I suspect you’re reading this, whoever you are, and I want you to know you have made my day.  Thank you!!!

…and you’re welcome, Jonah.   You’re my precious little son and I’ll always love you, no matter what.

All done.

Posted in Uncategorized, Wildwood | Tagged , , , , , , | 8 Comments »

the deep songs

May 4, 2011 by The Never Normal

I don’t think you get to good writing unless you expose yourself and your feelings. Deep songs don’t come from the surface; they come from the deep down. The poetry and the songs that you are supposed to write, I believe are in your heart.   ~ Judy Collins

Music has always meant so much to me.  When I was pregnant with Jonah, I put headphones on my belly and played Mozart and Paul Simon and the The Beatles (I hadn’t discovered Guster yet) and all kinds of music, playing to him, speaking to him.  As soon as he was born I played music to him every day, and to put him to sleep at night.  He still cannot speak in anything but short phrases but he can sing entire songs.

Here he is, age 7, singing a Guster song called “Keep it Together.”

Now he demands Guster’s new album (Watch video #6!!!) when we’re in the car, requesting it by asking for Cranberry Guster, as I’ve said before.  I wonder why it’s Cranberry Guster to him.  My boy is such a wonder.

I have lots more to say, but only a moment more to type.  Guster is coming to town tonight and of course I am going – I’m so excited I wrote them an e-mail and also tweeted to them, inviting them to lunch. 

Boy, am I a geek or what?!  (rhetorical question)

Guster’s songs have ‘kept me together,’ and for that I am more thankful than they will ever know. 

Posted in autism, singing, singing | Tagged , | 5 Comments »

ostrich mom & forest boy

April 30, 2011 by The Never Normal

Sometimes it amazes me how much happens in our lives between blog posts.  On Friday morning, one of the specialists from Wildwood School called me at work and she asked for the status of Jonah’s admission into Springbrook and Tradewinds.  It’s not great news.  Tradewinds (in Utica) has accepted him but they’re full and we have to wait indefinitely for a spot for Jonah.  Springbrook may or may not take Jonah, depending on whether they can squeeze him in among the kids they’re bringing back to NY from out of state.

Then she told me the functional behavioral assessments aren’t working – that almost always they can determine the cause/antecedent for a child’s behaviors – at which time they can then implement a plan, which almost always works, at least to some degree.  But with Jonah, the functional assessments come out different every time.  Avoidance, say, or attention-seeking.  And oftentimes, nothing at all.  Even during preferred activities he will sometimes aggress, lightning-quick and without any warning whatsoever.

She told me Jonah’s quality of education is now practically gone; they’re just managing him at this point.  I realized suddenly that, in a sense, I’ve been an ostrich mom, hanging on to the ‘promised placement’ I used to fear and now long for, burying my head in the sand until I can entrust Jonah to the hands of other people – professionals…experts…specialists who will help our boo get better…people who will unburden me from everything I don’t feel like I can take anymore.  With that realization came some sort of a second wind…an epiphany that no one will help us the way we’ll help ourselves, though Wildwood sure is trying.  They are kind and encouraging, diplomatic and sensitive.

They’re helping me look into other options – other residential places they’ve seen and are very happy with…the Anderson Center, they say, in Staatsburg NY, near Kingston, though we once scheduled a tour there and canceled it, back when I thought I could be picky about schools and we wanted something closer.  Wildwood also suggested ruling out physical causes for his aggression – something we’d suspected but weren’t sure if we should pursue because of the trauma all the doctors and travel and tests would cause for Jonah.  Was it worth it, we wondered, when the so-much-more likely cause was simply a severe symptom of autism?  Now it looks like something else really is going on – physically, or neurologically, or God-knows-what.   I know it’s time to do more.

So I approached my boss all a-wreck, explained the situation briefly, and asked if I could take an hour or two to make some phone calls, please.   She was very understanding and said of course.   I went back upstairs, closed my office door, cried, cursed, swallowed half an extra dose of klonopin, and breathed in and out, in and out, in and out…slowly getting my shit together.

First I left a message at The Anderson School to schedule a tour…then I called a parent or two, for advice and guidance.  I left a message with a doctor here in Albany who (one parent told me) can run a full round of blood and genetic tests.  I called Boston Children’s Hospital to make an appointment.  I called Jonah’s pediatrician to order a sedative so I can get him there.  I called a homeopath.  I went online and ordered fish oil chewables.  I researched PANDA and gluten/casein diets – the former I’d never ever heard of, the latter was something we’d always dismissed for Jonah, since it never seemed he had any stomach issues, really, and we didn’t think there was much more than anecdotal evidence to support trying it.  Also, since Jonah’s recently been clinically diagnosed with juvenile idiopathic arthritis, I called the Arthritis Foundation as well, told my story, and was promised they’d get back to me soon.

Now momma-ostrich is awake and determined, shaking off the sand.  We’re gonna figure some shit out no matter what I have to do.

That was Friday.

Today M and I picked up Jonah to give Andy a break.  It was a beautiful springtime day in the 60s with sunshine, high pulled-cotton clouds, and that wonderful new-season-scent that pervades everything.   We went to the woods behind Russell Road park and Jonah practically skipped down the path, smiling and happy.

He loves the woods, is gleeful in the forest.   He was so good for us.

We let him slide in the dirt and toss handfuls of pebbles, hug birch trunks and throw twigs around.  (He was unable to hurt anyone, even if he’d wanted to, though he was as far from aggressing as I’ve seen him in a while).  Unencumbered by rules and regulations, alive and free to do as he pleased, he scampered – digging in the leaves and earth, running down the path ahead of us, laughing… again my sweet, fun, awesome little boy.

When he’d had enough of this particular forest, he requested train, donut, and waterfall, all his favorites and all within reason and reach.  After a speeding train and a third of a donut, which he politely handed back to us:  no donut – we drove on to the falls.  For the first time this year we walked down to the water, though he didn’t ask to go in.  Again he cavorted, explored, told me bye bye – and as I walked 10 feet or so away, he stood watching and listening to the falls, at home in his little zen-place.

In the midst of the storm of our lives, it was a pretty good hurricane eye.

Posted in Anderson School, autism, behavior, doctor, placement, Springbrook, Tradewinds, trains, Uncategorized, Wildwood | Tagged , , , , , , , | 2 Comments »

rewrite

April 27, 2011 by The Never Normal

“I’m working on my rewrite, that’s right
I’m gonna change the ending
Gonna throw away my title
And toss it in the trash
Every minute after midnight
All the time I’m spending
Is just for working on my rewrite, that’s right
I’m gonna turn it into cash

I’ll eliminate the pages
Where the father has a breakdown
And he has to leave the family
But he really meant no harm
Gonna substitute a car chase
And a race across the rooftops
When the father saves the children
And he holds them in his arms

And I say help me, help me, help me, help me
Thank you!
I’d no idea
That you were there
When I said, help me, help me, help me, help me
Thank you, for listening to my prayer…”

© 2010 Words and Music by Paul Simon

This has been a tough day.  I felt anguished and guilty, helpless…I wanted to leave.

But eventually I dried my stupid tears, took pictures of beautiful things, and kissed my little boy (with his incredibly dirty face and feet) before returning to the basement apartment to watch Match Game on DVR.

At least my new Paul Simon CD came in the mail today;  Paul’s one of my favorites (yes, I do love other bands and artists besides Guster)… I love his new music and was cranking it in the car today.  I tried to put it on when Jonah was in the back of the car but after 3 seconds or so he cried:  Cranberry Guster?  So I changed the CD and we drove to see the train, which never came.

“dir-fee!  dir-fee!” he called over & over until I realized he was saying “dirty feet.”  He’d been running around the yard playing barefoot when I arrived after work.

So to make up for the coherent post I just don’t have it in me to write, here are some pictures:

train comin?

in the background, buddha looks on at the near-blooming tulip & stonepile

magnolias blooming outside our kitchen window at work

dirty feet

i love cushy yellow ball

we’re forever crossing bridges.

Posted in autism, trains, Uncategorized | Tagged , | 4 Comments »

easter ham & humble pie

April 24, 2011 by The Never Normal

I will not remember today as Easter so much as the last day of Jonah’s vacation.  Tomorrow he’ll probably be a hellion at school, but he wasn’t so bad this week, as long as it must have seemed for Andy.  Jonah adores his daddy, after all, and when he’s home on break his routine is filled with no-pressure stuff like car ride and grandma and peanut butter roll.

Besides, Easter doesn’t feel much like Easter this year.  My mom, God bless her, made a big ham dinner last night and separated it all into Tupperware and packages, some for Andy and Jonah and some for M and me.  Today when M and I watched Jonah, we saw the train and stopped at grandma’s to visit and pick up our share of her Easter feast.

There’s no sitting down and eating it, you understand, without thrown food and overturned dishes, splashed drinks and a constant Jonah-vigil not worth attempting anymore.  Jonah showed little interest in the Easter basket grandma filled with bubbles and chocolate, jelly beans and spinning tops, running instead up the stairs, down the stairs, and up again into the spare room where he jumped on the bed screeching.

Then he wanted grandma to go for a ride with us.  When we’d buckled him into his harness, his beloved grandma seated next to him, he decided:  bye bye grandma.  You want to go bye-bye with grandma, or you want grandma to go bye-bye?  We didn’t know.  We never know.  He changes his mind before we can puzzle it out:  Grandma come on car ride, he said.  So we headed off for a tour of Latham and Loudonville but only got maybe 1/2 mile down the road before he pronounced:  all done grandma.  So we turned around, drove back, and dropped my mother off.  I ran inside to get Jonah’s basket and our dinner, and we left.

M and Jonah and I ended up at the Rensselaerville Falls, as usual; it is much warmer now and the snow has melted in all but the most shadowy pockets of the forest.  As usual Jonah ran way ahead of us and only wanted to stay a short while; even he understands it is still too cold to walk down to the water and wade.

This morning my friend texted me a picture of her little 3-year-old boy, seated on the couch with two baskets, a big smile on his face, the message reading:  Happy Easter! 

It’s the kind of thing you’d send to a bunch of people in your address book.  I stared at the picture of her sweet little boy, his huge smile — the Easter Bunny came!   I texted Happy Easter back to her and put the phone down, wondering:  What is it like to raise a neurotypical child?

I’m sure it’s actually harder to dress your kid(s) up, get to church and the family gathering, then come home exhausted with the kid(s) all hopped up on candy.   Hell, I ate half Jonah’s candy myself without him ever knowing or caring, and the only place we had to go was on a car ride to the woods to watch a waterfall…so we had an Earth-Day Easter…

I took a lot of pictures today, as you can see.  I also made some necklaces and put together a care package for someone.  I like to imagine the surprise of getting a box of fun things out of nowhere and for no reason at all. 

Guster has this video I love and play whenever I start to lose my faith in humanity, when I feel my hope waning.  It always makes me feel better.  I want to be a part of things that make people happier, even if it’s just one person at a time.

Anyway, after M and I ate our homemade dinner, I polished off a piece of J.S. Watkins cheesecake my mom had procured, then a healthy slice of humble pie as well.  Ah, all the complaints I spew.  And how small my little life really is.

Easter was delicious.

Posted in autism, behavior, grandma, trains, Uncategorized | Tagged , | 5 Comments »

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