Posts Tagged ‘the Beatles’

If your head tells you one thing and your heart another,
before you do anything, you should first decide
whether you have a better head or a better heart.

~ Marilyn vos Savant

Undoubtedly my heart is better than my head, but I’m not sure if that’s saying all that much.  Oftentimes I extinguish the embers attempting to flare into emotions simply because I don’t want to feel those emotions.  And other times the embers are fed by a circumstance or song, and they flicker and come aflame unbidden…causing anything from tight-jawed pain to tremendous joy.

Yesterday Jonah was a happy kid.  My mom waited in the car while Andy and I went to the residence, and Boo was standing excitedly by the front door.  I had brought his “octopus” with me, but a small red-headed boy hugged me and held out his hand for the toy, so I dropped it in his palm, smiling as he ran off happily to play with it.  Jonah didn’t mind, and I can always buy him another.  Jonah’s more concerned with where grandma is, and whether or not there will be delicious things to eat.  We went into his room to gather a windbreaker, and another kid came running in to jump & land on Jonah’s bed.  Another kid was in Jonah’s window because he loves to look out at the playground. Party in Boo’s room.  Jonah tolerated it nicely as we apologized for the handfuls of hair incident from the other day, and asked about his morning (which, they told us, was good).

The caregivers who had endured Jonah’s attack were kind, smiling and telling us Jonah is good far more often and causes smiles more than frowns.  My heart swelled so that tears came into my eyes.  Also he has been doing something new; whereas he used to take his shower and go straight into his room to lie down, now he is coming out into the main living room area to walk circles or sit on the couches with the other kids.  I am glad he seems to be moving toward some sort of socialization, even if the kids can’t really talk to one another (Jonah is one of the most verbal) and don’t actually play with one another in a traditional sense.

He can easily outrun me to the car (Andy could probably catch him, but I just started walking and running, and I tire easily).  There he found his precious grandma, but wanted mama in backseat?  After I’d gotten in the car and Andy had gotten in the driver’s seat,  Jonah turned to me and said “need help?”  I asked him what help he needed and he pointed to his shoulder.  I noticed Andy had forgotten to secure Boo’s harness to the clips on the back of the seat and I secured each clip, in awe of Jonah noticing this mistake and actually asking to be strapped in more securely.  I gave him a ScareMeNot and he stared out the window, watching for deer and the ducks in the pond as we drove off the property and to Andy’s apartment.

I'd brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window...

I’d brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window…

(This was supposed to be a photo of Jonah kissing Valiant Valerie, but the camera was still set on video, so it’s a one-second video instead).

After lunch and a bath, Jonah asked for grandma stay here? and Andy and I brought Jonah to transfer station. I’d queued up Guster’s Easy Wonderful CD but Andy asked him if he wanted Gunther or radio.  Jonah chose radio, which slightly annoyed me because I know Jonah loves Guster and would have been fine with it if we’d just put it in.  Andy calls Guster Gunther because E (who comes with J to bring Jonah to most of his doctor appointments) always calls them Gunther by mistake.  Music on the Top 40 radio stations all sounds the same to me.  I guess I’m a music snob.

Were I in charge of the music my boy is exposed to I’d play all kinds of different stuff, including Guster: all the Beatles CDs, some traditional children’s songs, Marlo Thomas’ Free to Be You and Me, Elton John, Kula Shaker, Crosby Stills Nash & Young, Billy Joel’s Glass Houses, songs from Sesame Street, Mozart & Tchaikovsky, 80’s pop music, They Might Be Giants, Simon & Garfunkel, the Grateful Dead, the Hilltop Hoods….all kinds of different things.  And I’d never, ever, ever, ever, ever, ever, ever play that dumb Taylor Swift song.

I suppose it doesn’t really matter, so long as he’s not listening to Gangsta rap or death metal.

Jonah’s like me in that his hair grows fast, and already he needs another haircut.  We’d like them to give him a buzz cut at this point, for it is getting to be warm, and that way it’s out of his face and will grow back in soon enough.

I’m anxious to take Boo on walks in the woods, push him on the swings, watch him dive into the pool, smile at his widened eyes when train comes toward us and passes by.  I want to take him to a Guster show and not have to leave.  I want to be with him on the beach, watch him cavort in the ocean and run barefoot along the jetties.

Yesterday M’s daughter J was here; we held hands and ran together to the park, where we kicked and bounced a beach ball around, and went on the slide together, and chased one another, laughing.  M and Jack-dog followed behind while J and I goofed around on the playground.  Later we walked, just J and me, to Stewart’s, where I let her pick out ice cream and a surprise snack for her daddy.  I looked around me and realized people figured I was her mother.  For a moment I knew what it was to be in public as “the mother” of a “normal” kid.

It felt, well….normal.  Which in my world is pretty damn strange.

I have two blooming multicolored tulips in my yard now, and I’ve re-stacked my stone cairns.  Time to oil my Buddha tucked into the bushes out front.  Time to make nature pictures in the woods.  Time to rejoice in the springtime.  May 1st is coming – my favorite day of the year, because it slams the door on winter with the satisfying sound of finality, and who doesn’t love that?

“Ha ha ha ha
People are laughing
Children are singing
Come join the dance

And the walls around us
Which we kept at such a cost
When we turned around
Came tumbling down

Ha ha ha ha
She can’t stop laughing
He can’t stop singing
First day of may!”

First Day of May by James Taylor

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There is a lot to say, and I’m in one of those slumps where writing is effort and, more than effort — an exercise in telling when it is easier to stay silent.  When it is preferrable to play an online scrabble game instead, or watch another episode of All in The Family.  To bury my face in a familiar book and re-read it for the fifth time.  To sleep.

Today is M’s birthday; tomorrow we’re going to see Lewis Black, a comedian we both love.  And on Monday I went to see the Beatles band Rain at the same venue with my awesome friend K, her husband, and his sister.  Had a wonderful time, and ate, appropriately enough, at the Old English Pub first.

K gave me a gift bag when she picked me up for the show.  I had no idea why, until she explained it was a birthday present for Jonah.  Stunned, I looked inside.  She’d gotten him two cool rubbery sensory toys, a tennis-ball sized bouncy-ball that lights up, a big bottle of bubbles, and some sidewalk chalk.  I was hoping she wouldn’t see as I tried hard to keep it together but tears escaped my eyes anyway.  At least I was quiet about it.  Only a scant few times, since Jonah was three, has anyone outside my family given Boo a birthday present – or even acknowledged or mentioned his birthday.

On his third birthday, the last kids’ party I ever had for him, he was so completely disinterested.  Jonah didn’t care about the party at all.  As the kind parent guests arranged games for the little kids, I was upstairs trying to coax Jonah back to the party when all he wanted to do was sit and stare out his window.  After that I only had family parties, and, a few years later, no parties at all.  At least he had a good one this year at his residence, with presents, pizza, and balloons.

I have learned not to care so much whether or not people remember his birthday.  I get it, after all.  People don’t know what to get for a kid with autism.  Or they hear me say “he doesn’t know his birthday from a hole in the ground” and so they figure I don’t think his birthday matters.  I understand, and don’t expect.  Hell, I forget birthdays all the time.  But K’s gift sure was a wonderful surprise.

I took one of her gifts with me today when I met Jonah (driven and accompanied by J & E from school) at his retina doctor’s office.  E told me Jonah had an aggressive incident at school today and had to be held.  But he was a very, very good boy for the appointment, for all the eyedrops and demands to look here and there, the bright lights, the plastic thing to be held over each eye as we request he read letters and numbers over and over, the machine he must put his chin inside.  All of it.

Jonah was a very good patient today.

Jonah was a very good patient today.

Because he was so good, the doctor got a better look inside his eye then she ever had before.

I’m sorry.  That’s all I can write tonight.

I’ll come back tomorrow, or the next day.

I love you, precious Boo.

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Usually I know how to calm him at first, to get him used to being with me.   Singing softly.  Today I try Guster and The Beatles but he gives me a no to both of those.  I’ve Been Working on the Railroad it is.  We take turns with the lyrics, me singing a line or two, then pointing to him, he picking up tune & rhythm without breaking tempo.

It’s a complicated song as children’s sings go, but he prefers complicated songs with distinct bridges into all-new musical directions, and back again.  Keep it Together by Guster, for example.  I should turn him on to Bohemian Rhapsody or A Day in the Life.

He asks me for hug and so I slide over to him, and he wants kisses on his head, and I wrap my arms around him gladly, taking advantage of this somewhat rare physical closeness I get with my son.  More kisses? he pleads, giggling.  I kiss him all over the top of his sweet little head and then lean back to face him for a kiss on the lips.

SLAP his hand flashes out and catches my upper cheek and eye.  SMACK comes the other hand, fingers now curled to grab and pull at me, though my glasses are off and I’ve tucked my hair under a hood, so contact is minimal.

I caught his wrists after that, and we got him to the apartment okay.

I forgot my camera; this picture is from another week.

When I got home, I did laundry and dishes and raked my whole front lawn, stripping off layers of sweaters and zip-up fleeces until I was wearing just a t-shirt.  I moved in hard sweeping lifts, leaves clinging to the rake, my clothes, my gloves.  The sun and the cool and the wind-less day made for ideal raking conditions.  I felt strong: alive and focused.  I shoved the leaves down inside the bags with one leg, my foot stomping hard, compacting – my nose filled with the almost-decayed smell of fallen leaves.

I’m just a hair shy of the kind of OCD that would have me picking up stray leaves one by one from the lawn.

It felt so good to work fast and hard, to know what to do to complete a task, to literally bag it all up, and to have a different result than when I started.  Anything I can do that brings with it a logical beginning, middle, and end is good.  These blog entries are vital.  Making a difference somewhere, somehow, any way I can.  Even if it’s just clearing a scattered gathering of autumn leaves.  The leaves aren’t going to pretend to go willingly into the bag and then suddenly stage a coup and escape, attacking me with their sharp pointy stems and edges.

Work is important. Tasks are vital.

Otherwise I would go mad.  Mad madder maddest. 

Keep it together;
Can we keep it together?
We’re singing a new song now…
and everything starts today.”

~ Guster

My friend D send me a coloring book in the mail, and I’m about to go have brunch with two other wonderful friends, after which I will take a walk in the sunshine to the park. Maybe make some nature art with what’s left of the colorful leaves.  Or break out the crayons and play in my new coloring book.  Play UNO with M’s kids.  Play with my dog, pet my cat, send out some cards, maybe a package.  Perhaps I’ll even call someone I haven’t talked to in a while.

Just to pass the time away.

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In preparation for Jonah’s new chapter in life we are (hopefully successfully) going to give him a buzz cut tonight.  Sitter/cousin D is coming over to help Andy and me- and with the 3 of us we should be able to get ‘er done.  Then, if it clears up and is nice later, D and I will take him to friend H’s to swim. 

I am starting to think ahead, beyond the time when Jonah goes away.  Before this I was simply thinking of it as a doomsday clock – that everything would come to an end on August 16th – that there was no point in thinking beyond this day or its inevitable heartbreak (and relief?).

My fantastic therapist, Dr. Alex, mentioned that I maybe should make a (real or metaphorical) social story for ME.  I’ve made one for Jonah and something like one to send to his care workers, but one for ME might help me prepare emotionally – to help me not block out, ignore, or go numb about all of this, which are the defense mechanisms I have been using.

Jonah has been awful at school.  Where usually he would be at camp during summer school, this year he has been disallowed (and, unfortunately, rightfully so) because of his behaviors.  I’m so happy the Anderson School has such a big, nice pool so he can swim.  At Wildwood he has been what they euphemistically call “smearing” almost every day.  YUCK.  Then they have to shower him and clean all the shit off him, the walls, themselves – and probably endure scratches, bites, and kicks in the process.  The dedication of these direct-care workers amazes me. 

It would be one thing if they were making the money they deserve, but the money just isn’t there.  I wish they could have a capital campaign earmarked specifically to raise salaries of these incredible individuals.  I am so grateful for them I want to fall at their feet and sob out my thanks, in my usual over-the-top style.  Instead I will make them gift bags and pray they’ll know, somewhere in their hearts, how much they (and Wildwood) have meant to us and to all the children who need them.  What a wonderful school. 

Here’s Jonah learning emotions, a year or two ago, with his speech teacher, L.  In an earlier post I put up a picture of “excited face.”  Here is “mad face” :

If Anderson is anything like Wildwood I will be so relieved. 

I have received ever-increasing support from everywhere – people e-mailing me, leaving comments here – people who don’t even know me, or who knew me from my childhood.  People I’ve met both virtually and personally who’ve been through this or are going through it…we’re like Sgt. Jonah’s broken hopeful hearts club bandI am not alone.  I am not alone.  It is my mantra and I cling to it like a proverbial rope you climb to get up and back over the cliff.

I yearn for Gina, for she was my sister-in-spirit.  I yearn for siblings, for I have none.  But I don’t want to yearn.   I don’t want to worry.  When I don’t want to worry I think of this Bible verse:

“Look at the birds of the air; your heavenly father feeds them. Are you not much more valuable than they? Matthew 6:26

Stay focused, Amy.  Have faith.  Stay busy, stay optimistic, stay positive. 

And don’t forget to breathe.  When I want to remember to breathe I think of HH the Dalai Lama:

Practice for the New Millennium by the Dalai Lama

1. Spend 5 minutes at the beginning of each day remembering we all want the same things (to be happy and be loved) and we are all connected to one another.

2. Spend 5 minutes breathing in, cherishing yourself; and, breathing out cherishing others. If you think about people you have difficulty cherishing, extend your cherishing to them anyway.

3. During the day, extend that attitude to everyone you meet. Practice cherishing the “simplest” person (clerks, attendants, etc) or people you dislike.

4. Continue this practice no matter what happens or what anyone does to you.

These thoughts are very simple, inspiring and helpful. The practice of cherishing can be taken very deeply if done wordlessly, allowing yourself to feel the love and appreciation that already exists in your heart.

I’m trying; I’m learning.  I’m grateful. 

I just hurt.

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“and in my hour of darkness, she is standing right in front of me…”

~ The Beatles

I feel stronger right now than I have in weeks.  Months.  Maybe even years.  In this ‘hour of darkness’ I am getting things done for myself and for my son, and I am standing upright, and I find I am capable.   Reverting to my Catholic upbringing, I pray to Mary:

Help me, Mary.  You had a difficult son too.  You understand.  Help me please. I feel she has. (I always did like Mary).  Now I know a humility that has given me an unexpected strength,  if that’s not too much of a paradox.

I visited Andy in the hospital today and it was good.  There was no poison or animosity – only sorrow, and shared pain, and real love.  We will always love one another.  There is much yet to get through but I can do this thing.  I can do this.

Jonah did very well yesterday at after school program, so I took him to see the train and we saw one right away, which he (of course) loved.

He behaved at home last evening too, and he was a good little boy this morning.

He even woke up laughing. 

Hey mama!  Hey mama! he called — and echoing his laughter, I went to him and covered him in kisses.

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To entertain Jonah (and one another), Andy and I sometimes change around existing songs, Weird Al style, to suit our very own weird little family.  And because we are often putting Jonah in a soapy bathtub right after changing a poop, one of our “top 10 hits” revolves around this activity – it’s sung to the tune of  “Another One Bites the Dust,” by Queen, and goes something like this:

Da-da dum. dum. dum.  Put the soap… in your butt!

Da-da dum. dum. dum.  Put the soap… in your butt!

Putt the soap in your butt, putt the soap in your butt, put the soap… in your butt!

Hey!  I’m gonna clean you, too!  Put the soap… in your butt!

We sing gems like this to Jonah, he memorizes them, and then he performs them.  Loudly.  In public.

I know, I know.  We have no one to blame but ourselves.  But how else to explain the necessity of a clean nether-region to a kid like Jonah?  He loves music.  He remembers songs.  This little boy, who can’t string together more than 5 or 6 spoken words at a clip, can sing entire songs – verse and chorus, the whole shebang.  Go figure.

Probably 65% of his repertoire is made up of Guster songs (Yes, I brainwashed him)…

…and maybe 10% kids’ songs (The Wheels on the Bus was an early favorite), 5% Beatles songs (he especially loves Michelle and Yellow Submarine), 5% old-fashioned standards (my dad taught him songs like “Daisy” and “Bye Bye Blackbird“), and the rest these silly made-up tunes that Andy and I sing to him.

Oh, wait – I almost forgot about “Happy Birthday” – one of Jonah’s all-time favorites, quite possibly because its performance at certain gatherings is rewarded, nearly immediately, by cake.   There was a time not too long ago when lighting any candle anywhere in our home necessitated a sing-along of the tiresome tune you should really only have to hear once a year.   Every so often I would deliberately indulge Jonah, lighting a candle so we could both sing the Happy Birthday song (to Jonah every time of course), pause for effect, blow out the candle, and clap wildly, shouting “yay!”

And then light the candle again and start all over.

And over.  And over, and over, and over.

Light, sing, blow, clap, yay! “More?  more?”

Light, sing, blow, clap, yay! “More?  more?”

Light, sing, blow, clap, yay! “More?  more?”

It makes sense to me, though, that Jonah learns well this way and can remember lyrics and tunes.  I mean, I learned more math, grammar, science, and history from Schoolhouse Rock songs (sandwiched between The Superfriends and Bugs Bunny on Saturday morning TV) than I did from the entirety of my elementary school education.  And I remember memorizing many a sedimentary rock for geology tests in college by putting their names to some then-popular tune.

No, I can’t say I’m surprised that Jonah sings along to life.

I have to wonder, though:  was it right for us to mess with such an anthemic Queen song, bastardizing it shamelessly into a ditty about (of all things) putting soap in your butt?

Even Weird Al didn’t stoop that low.

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