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Posts Tagged ‘Buddha’

in the middle in the middle in the middle

Posted in autism, behavior, grandma, Uncategorized, tagged , , , , , , , on April 15, 2013| 2 Comments »

“Never be afraid to trust an unknown future to a known God.”
~ Corrie Ten Boom

On Saturday Boo was his reliable, predictable self, and yet he never ceases to amaze me.  Andy had taken him overnight and so he was there when we arrived.  He had been asking for “grandma” and “mama” all morning, yet when we arrived he was more interested in the food my mother had brought him.  This time she’d added a new item:  a small container of mini-Oreos.  Jonah’s not the type to eat things in what others might consider a “logical order” – food, then dessert.  His banquet must be presented all at once, and though he did eat most of his sandwich, the Oreos were a big attraction.

Jonah enjoys the stuff in the middle — the meat and cheese inside the bread, his fingers first tap-tap-tapping against the sandwich and then, usually, discarding the bread altogether to get to whatever is the middle.  It was no different with the Oreos.  He held each mini Oreo carefully in his little hands and pulled it apart, scraping the creamy white stuffing out of the middle, then discarding the two outer cookie pieces.

cookie fun

cookie fun

He gleefully attacked his lunch with fervor.

cookie mouth

cookie mouth
YAY!

YAY!

We are waiting for warmer weather but offered to take him to the park anyway, or the train, or the Poet’s Walk.  When we asked him if he wanted to do any of these things he answered “no,” sweetly but firmly, to each one.  “Transfer station?” he asked, which is a recycling facility where Andy takes his paper and cans, etc. every Saturday.  It is car ride Jonah wants, and he almost always says “grandma stay here.”  I think it’s because he wants the whole backseat to himself.  So my poor mother is stuck watching QVC and Fox News on Andy’s TV until we return for a bath and then another request for car ride.

I found out about an open swimming program at Bard College on the weekends, but Andy seems reluctant to take him, lest he throw a fit.  I want to try, though.  Perhaps M will come down with me some Sunday and we can take him.  Jonah loves the water so much!  I was ready to book a 3-night stay in Cape Cod this summer, to take him to the ocean with Andy, to watch him frolic in the waves, to hear his little voice cry gleefully for ocean!  It is a word we do not use, for if we cannot take him it would be mean to plant the idea in his head.  Now it looks like I may be hard-pressed to take him at all.  I will find a way, for I am a determined mom and want to give the gift of ocean to my Boo.

I would like to end this post with some quotes and passages upon which I have been reflecting.  There are discoveries to make, and self-improvements to make, and faith to build.  There is self-awareness and I am attempting to step away from myself and see myself as others see me.  I am looking deep into a metaphorical mirror to ensure I can remain true to myself and to everything I have ever wanted to be…a great mother, a loyal friend, a good person.  Most of all I am seeking to be kind to all I encounter, to forgive, to understand (and not only to be understood),  as in the prayer of St. Francis, perhaps my favorite prayer/hymn.  I am praying it with everything inside me and turning things over to the certain God in which I believe.

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury,pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

Oh Master, grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life. Amen.

– – –

“Experience: that most brutal of teachers. But you learn, my God do you learn.”

~C. S. Lewis

– – –

Matthew 5:44-45 says, “But I tell you: Love your enemies and pray for those who persecute you, that you may be sons of your Father in heaven. He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous.”  Thus, now go on your knees and pray for the person who has hurt you.
– – –

“To enjoy good health, to bring true happiness to one’s family, to bring peace to all, one must first discipline and control one’s own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.”

~ Buddha

– – –

“Silence is one of the great arts of conversation.”

~ Marcus Tullius Cicero

– – –

“To thine own self be true,
and it shall follow, as the night the day,
thou canst not then be false to any man.”

~Shakespeare

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a day of grace

Posted in Anderson School, autism, doctor, glaucoma, grandma, iritis, Uncategorized, tagged , , , , , , , , , on March 24, 2013| 2 Comments »

Warning:  this post goes all over the place.  Please keep hands and feet inside the vehicle.

What a wonderful, sweet boy my Boo was yesterday.

Andy had picked him up the night before so when my mom and I arrived, Jonah was already there. Andy told us Jonah asked for both of us about 10,000 times that morning.  When I walked in, Boo immediately sought out the goodies I carried (one bag with natural potato chips and another full of birthday presents from my friend K). After capitulating warmly to hugs and kisses from my mom and me, he tore into the goodies..tune-fish sandwich…bath with new toys….more kiss?

His perch while eating is atop a white garbage container which sits next to Andy’s kitchen counter. It is Jonah’s dry bar  – and the garbage can, his bar stool. He tucks his legs under him, mama-style, and chows down to his content. Good thing Andy is very clean, but then again, no reason to be a germaphobe when your kid takes 5 baths a day.

only my kid

This is so Jonah

Nearly immediately thereafter (and sometimes during) his meal, Jonah decides it is time for bath. On this day, I help (usually Andy does), and we had fun splashing around in the bubbles with his new, courtesy-of-K, colored straws.

Colored straws!

Colored straws!

Here I must pause to reassert I am a lucky parent in several ways; for instance, it’s exceedingly inexpensive to bring him joy in the form of play. He is 11 and other children his age have lots and lots of expensive things. I don’t even know what. A gaming station, for certain. Hell, even I had one of those by age 12 or 13. (Mine was called Telstar Colortron and played pong). Anyway, I get off cheap. My mom used to buy him all kinds of electronic games and learning gadgets but he just didn’t really like anything unless it played music. Now he just bops along like a playah, listening to hip hop in the back of dad’s car.

cool as a cucumber

cool as a cucumber, pimpin’ the Gs

Then we played blowing raspberries (I have been watching All in the Family a lot).  Boo thought this was great – and, as usual, ended this very slobbery game by sucking his thumb.

He’s got a couple of new teeth (molars?) coming in, too, so he decided to use grandma’s hand to try them out:

he thinks grandma's hand is a teether

he thinks grandma’s hand is a teether

Jonah was happy to have grandma along in the backseat, something he has not tolerated lately. Grandma stay here? he usually says, and my mom stays at Andy’s apartment watching Fox News. But this day he was tolerant, even sweet and lovey. I love taking these pictures of Jonah with his adoring grandma.

o smiley boo

o smiley boo

Oh, it was a good day. A day of grace. A gift to all of us.

At that doctor appointment…the one I didn’t want to talk about anymore last post…Jonah was so very very good, I’d said. So good that the retina specialist could see both his Reticert implant and his optic nerve very well. So well that she turned away from Jonah and spoke to me in a low, controlled, serious voice: I’m very concerned. Jonah and J left the room while E and I stayed to talk to the doc.

The pressure in his left eye is at least 30, and she suspects higher. The optic nerve has thinned considerably, drastically more so than when she saw him a few months ago.  With his left eye, he could barely read the giant E on the chart.

little boo is better at the eye doctor than most adults are, including me

little boo is better at the eye doctor than most adults are, including me

From what I could understand, we are out of options but for one: do what Dr. S (the glaucoma doctor) has wanted to do all along – take the Reticert implant out. It isn’t as if Dr. F (the retina doc) has come to agree with him – it’s that she doesn’t know what else to try.  If we opt not to operate to take the damn thing out, his sight will eventually disappear altogether in that eye. If we opt to operate, the Reticert comes out but it might not do any good at all.  It’s a shot, though doc’s confidence is not high.

I keep remembering how much pain he experienced after they put the Reticert in his eye 3 years ago. It was the first time in his life, at age 8, that he verbally expressed pain. Eye hurt? he cried, hanging his head in despair-like desperation, cradling his forehead with one hand, pain pulling the words out of him.

Since the Reticert isn’t supposed to be dispensing meds anymore, it could just be left there, according to Dr. F.  But now she wants to try taking it out. E asked questions. I asked questions. Of course I forgot to ask a lot of questions. I scheduled the operation for May 14th, figuring there was plenty of time to change our minds, to research, to ask other people.  To think.  Absorb.

There is a doctor who comes from Boston to see patients at Dr. F’s office. I want her to get him over here to see Jonah before we do all this. I need a second opinion, a different perspective. It isn’t that I don’t really love and respect Dr. F.  I do think she maybe has difficulty dumbing things down for we lay-folk.  I didn’t understand well, for instance, that the eye pressure would in turn put pressure on the optic nerve, which is why it’s thinning out.

When I left her office with E, I was in a daze. I think E was, too. Poor peanut butter, she said, her loving nature holding all these children’s hearts to her bosom; her sharp mind keeping track of them, protecting them, listening, keeping on top of appointments, trusting her instincts. She and J are amazing. I have said it before and I’ll likely say it again.

When I got to the van, I was almost openly weeping, fearing the worst — total blindness — ready to curse God pre-emptively for a nightmare scenario which hasn’t yet occurred. Keeping it together for a moment, I kissed Boo soundly and turned away. Then E hugged me and J as well, and I got in my car and cried, allowing a fog to descend on everything. I can’t fight the aggression and the blindness and the 6% proposed fucking budget cut to the Office of People with Developmental Disabilities all at once.

And so I called Andy, my dad, my mom. Told M and a few close friends. A few people at work. People with autism are usually visual learners. The irony would be funny if it weren’t so maddening.  I called Dr. F’s office and asked for her e-mail address. I am not an orator and if I speak with her on the phone, I will forget half of what I want to ask her and most of she tells me.  If I can e-mail her, I can take my time to gather my thoughts and formulate my questions.

When my mother arrived yesterday, we hugged one another and I held on to her tighter and longer than usual. She loves Boo more than anything on this planet, I believe, and that is why she can know my feelings perhaps better than anyone except Andy. We only talked about it a little. We both said we would give him an eye if we could, and then we had an “argument” about which of us should hypothetically give him an eye, and she declared it should be her eye – which sees very well, she’ll have me know. Besides, I need my eye for work, she asserted. It was a ridiculous conversation but it kept the focus (pun intended) away from the fear.

And then the beautiful scent-of-spring Rhinebeck cold and a wonderful day of grace.

If you know me at all you will probably be surprised to hear me say this but I would love to take Jonah to see Pope Francis.  How cool if he were even to be blessed by this man who wants us all to be humble, to protect the weak, the environment, the poor.  I love Francis’ humility and his gentle spirit.  I smile when I read about what he says and does.

I would maybe take Jonah to Lourdes, or a faith healer I believe in (is there any such human?)  I am buying him essential oils. I’m becoming more willing to try anything innocuous as long as it is not downright ridiculous. And fewer and fewer things are sounding ridiculous. You can’t understand how desperate you can get until you walk a mile in the moccasins.

This is why I love working with prospective adoptive parents. I understand their emotions, if not their exact situations. I get it. I know what is like to want something so badly, to have all this love and all kinds of questions like when is this going to happen and is this going to happen and my God who can I trust who really cares who has a heart? I understand what it is like to be part of a vulnerable population.  Plus I am adopted and it gives me a special connection to them all.

Divinity is prodding at me. My faith is so weak. A fucking mustard seed. I am the atheist in the foxhole (though I never was an atheist) in the sense that I find it easier to reach out to God when knocked to my knees, even to a God I don’t understand or can wrap my mind around. It makes sense that there would be a Jesus son of God in order for we humans to wrap our minds around it all.  A human you can relate to – even one who tells puzzling stories and heals people left and right. Why do I struggle so with the concept of God and accepting Jesus into my heart?  Is it all the truths I see in other religions?  Can’t I love and pray to Jesus and still believe others will go to heaven too?

Do I have to believe in what I can’t help seeing as a “special club” mentality of I’m going to heaven and you’re not?

I would rather follow Jesus through actions, evangelize through deeds. I would rather listen and act upon the wisdom of Buddha as well. I would rather believe there is a chance for us all to experience an afterlife, a rebirth, something other than nothing.

At any rate now I am praying. And in my old Catholic way. Praying to the Mother, to Mary, to help us, to intercede on our behalf. The Protestants don’t understand why we pray to some saint to intercede when you can just go straight to God, and I’m not sure I’ve got an answer for them, but I know St. Anthony comes through for me when I lose something important, and I feel Mary listening, empathizing as a mother who raised a difficult son of her own. Sometimes when I pray to Jesus it is more like Guster’s song Empire State:

“I’ve been talkin’ to Jesus, but he’s not talkin’ to me…”

It is difficult to “give it to God,” and it is a fine line. Do you throw up your hands? Are you supposed to step completely out of the way?

Please feel free to chime in.  These are not hypothetical questions, and I am seeking…

He conquers who endures. ~Persius

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buddha, mary, kurt vonnegut, gandhi, & w.w.

Posted in autism, grandma, placement, tagged , , , , , , , , on July 26, 2011| 3 Comments »

“The seed of suffering in you may be strong, but don’t wait until you have no more suffering before allowing yourself to be happy.”
— Thich Nhat Hanh (The Heart of the Buddha’s Teaching)
 
I am losing a lot, like it or don’t, as P would say.  But I’m tired of myself, tired of carrying on in my grief, so I’m turning (as you may have noticed) to Thich Nhat Hanh, one of my favorite Buddhist monks, for guidance and peace.  I’m turning to the Buddhist view of impermanence – that which says nothing has permanence, that permanence is an illusion we cling to.
 
Well I’m a Buddhist by circumstance, then. Yet I am also many more things: raised Catholic, I still go to Mass on occasion and cling to my roots, finding solace in the ritual of the Mass.  I may be other things I haven’t even discovered yet.  So it goes, to throw in some Vonnegut.  This is my favorite little story about Kurt Vonnegut, taken from Wikipedia:
 
In the mid 1950s, Vonnegut worked very briefly for Sports Illustrated magazine, where he was assigned to write a piece on a racehorse that had jumped a fence and attempted to run away. After staring at the blank piece of paper on his typewriter all morning, he typed, “The horse jumped over the fucking fence,” and left.[17] On the verge of abandoning writing, Vonnegut was offered a teaching job at the University of Iowa Writers’ Workshop. While he was there, Cat’s Cradle became a best-seller, and he began Slaughterhouse-Five, now considered one of the best American novels of the 20th century, appearing on the 100 best lists of Time magazine[18] and the Modern Library.[19]

The lesson I take away from all of this is I can’t abandon life by sitting in my soiled self in the sorrowful, shallow end of the pool.  I have to keep writing because it saves me.  I can come out the other side of this, make myself into someone good, be Jonah’s mother as best I can, be the change I want to see in this world (thanks, Gandhi) instead of complaining about the changes that aren’t happening.  I may moan and rave, cry and bitch, but I’m not going down without a fight.  I am recharged with people all around me, some who don’t even know me.  They care and they tell me so and it helps like they will never know.  I am not alone, I tell myself, mantra-like.  I am not alone.

Mary helps me too.  Yes, that Mary.  The mother of God Mary.  She sure had a difficult child, an only child (it seems) and she lost him too, in many ways, before she really lost him.  She understands. 

  • St. Josemaria Escriva: “Love our Lady. And she will obtain abundant grace to help you conquer in your daily struggle.”  “When you see the storm coming, if you seek safety in that firm refuge which is Mary, there will be no danger of your wavering or going down.”

How can I believe all these things simultaneously? 

“Do I contradict myself?  Very well, then; I contradict myself.  I am large – I contain multitudes.” ~Walt Whitman

(I’m actually quite scrawny, but I think Walt was being metaphorical). 

I am going over to see Jonah-boo tonight, to take him on the “Groundhog Day” tour of his favorite things:  the train, car ride, maybe grandma or a peanut butter roll.  If it is warm enough, swimming and splashing. 

I am looking forward to it, whatever it brings.  I love him so much.

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buddha’s tulip

Posted in Anderson School, autism, Springbrook, Tradewinds, Wildwood, tagged , , on May 10, 2011| 5 Comments »

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.

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