Andy called yesterday to tell me Jonah had a bad tantrum/aggression in the van – not sure where they were going to (or coming from), but Jonah was being all snuggly & lovey with a caregiver one moment, then launched himself at her, grabbing a chunk of her hair. Another caregiver tried to intervene but Jonah got a chunk of her hair too. When it was all over, Jonah had two handfuls of hair and a small bruise.
I’d almost rather hear that some kid attacked Jonah and got a hunk of his hair than be told Jonah was the aggressor.
His caregivers are dedicated individuals who deserve to be wealthy, and though I have been assured they are paid better than at some other schools, I still don’t see why they don’t get more for what they endure, and how they love, and why they do what they do…which is essentially to be foster parents for groups of disabled children.
So many things work backwards in our world. God forgive us all for not caring more about one another.
I know Jonah does not hurt others deliberately, or at least not with malicious intent, and I know he can’t help who he is and what goes on in his little brain…but that knowledge doesn’t fix anything or help the pain I feel when he hurts others. In all my life I never imagined giving birth to one who harms people. It’s almost funny.
And in a little more than two weeks he will have his big eye operation to take the Reticert implant out, in a last ditch effort to save what little sight he has remaining in his left eye. The irreverent thought just came into my mind that if Jonah cannot see as well, perhaps he will at least start missing his targets. Andy and I will have to be hyper-vigilant to ensure Jonah does not touch his eye shield or try to itch his eye beneath it.
Today I am going to visit my therapist and I will talk to him about my struggle with this ever-cyclic aggressive behavior I can’t accept and have no power to control. I know better than to hold on to the wish to control it, and I know better than to place blame upon myself, or upon Jonah, or upon God, or upon anything at all. I know better. I just can’t help the tears that always come, the feelings that always arise, the frustration I always feel. The fear that as he gets older and bigger it will only get worse. Hopefully Dr. A. can help me with all that.
I know when there is a situation I cannot change, I can only change how I react to it. And so I am making changes. Now I exercise, eat better, meditate, pray, and take long walks in the woods. I breathe deeply, in and out. In and out.
I’m counting on the spring to bring new life, new hope, and new health, body-mind-spirit all working together to find the place inside where things are quiet and still. Where music plays and my heart rejoices. Where there is peace.
No one gives their dreams away too lightly They hold them tightly warm against cold One more year of traveling ’round this circuit Then you can work it into gold
They say, “Jonah, he was swallowed by a whale”, hmm But I say, “There’s no truth to that tale” I know Jonah, he was swallowed by a song
Here’s to all the boys who came along Carrying soft guitars in cardboard cases all night long An’ do you wonder where those boys have gone? Do you wonder where those boys have gone?
“If you can’t make it better, you can laugh at it.”
~ Erma Bombeck
There remains inside me, despite every effort to squash its useless purpose, an ugly envy when I see beautiful photos of families – husband, wife, child/children, smiling, caught in a snapshot of happiness. The knowledge that these parents may tuck their little ones in at night, or cheer them on at sports games, or watch them proudly in the spelling bee. The realization that they have the opportunity to guide and teach and comfort their kids, to gather together in their own family unit, tucked into time itself with undying memories.
Of course this is foolish, imagining idyllic problem-free lives. It is never so. Behind every smile is pain, and in every life falls the rain of sorrow. Yet I have but one child, too far away from me, and I am unable to guide him anywhere against the wilfulness of autism itself which cages him in its unrelenting grasp. Jonah’s father is gone from me – and as necessary as it was, it is too often cause for feelings of inadequacy, of failure, of loss.
The mornings are hardest. Awakenings. In sleep we are all embraced by the quiet wellspring of a dark, unknown possibility and promise. Saturdays are question marks, when every week my mother and I punctuate the ride to Boo with silent queries and fervent prayers.
When we first picked him up at his residence, he was happy and excited. The caregivers told us he ate two breakfasts and was behaving well. He was calm on the ride to Andy’s apartment.
Jonah and his “octopus.”
Just a few days ago I phone-conferenced in to his IEP (individualized educational plan) meeting. I heard encouraging news about his progression in verbal communication – he is learning to say “I like” and “I see” (etc.) to begin sentences, instead of just “I want.” He is not yet generalizing this beyond the classroom, but I am confident he will. They tell me he is most anxious (and therefore likely to aggress) when he is in large crowds or feels encroached upon by someone sitting too close – which is most likely why he only tolerates anyone in backseat for the short duration of the ride to Andy’s apartment. Often he will ask for daddy in backseat, but I can’t drive Andy’s stick shift and neither can my mom. I suppose I should learn. How hard can it be?
They told me he has a rash on his penis which they are treating, and they are beginning to recognize it as a recurring cyclic seasonal thing. He will have been there for two years in August.
The mind reels.
This last Saturday brought change, as Saturdays often do. He ate lunch on his garbage can perch, and had his bath.
Whereas usually Jonah will ask for mama to ride with daddy to transfer station, instead he held his palm up to me when it was time to go. No mama, he declared. Mama stay here.
I smiled weakly and stayed behind, briefly playing with Andy’s landlord’s kids, Manny and Isabella. They are cute kids, and Andy’s landlord looks like George Clooney:
I call him George
Sweet Isabella with Protector Patty, a ScareMeNot.
I pulled Andy’s copy of Clan of the Cave Bear off his bookshelf and read a few pages about Brun and Broud, Creb and Ayla, until they all returned. Jonah came flying in the door, and my mother and Andy said he did not want to come back to the apartment at all. He wanted park.
We were all glad, since usually he only wants car ride. But once again he wanted no mama. My mother felt so bad for me. “Mama is coming too,” she told him. “No…no,” he answered. My mother decided to be the one to stay behind anyway, and I brought along some root beer for Jonah to sip in the backseat of the car, as incentive for him to let me come along. He was not appeased.
“I hold it,” he declared as soon as he was strapped to his safety harness. Andy opened the can and poured most of it into a cup, which he gave to me, then he handed Jonah the small can with just a bit of soda inside.
Laughing, Jonah chucked it at us, splattering the dash and control panel of the car’s radio.
sticky mess
I cleaned up while Andy removed Jonah from the car and took off his harness, telling him “You blew it. No park. Quiet time.”
looks like an arrest
After this we went back inside, where Andy and I got Jonah to lie down on blue bed and each of us lay on either side of him. He was quiet for a few minutes and then turned to me and held out his little hand. I kissed his palm. He lifted his leg out from under the covers and I held his little foot and kissed a toe. More kiss? he wanted. Of course more kiss. I kissed each toe, his ankle, his fingers…the softest place on his neck.
“I love you,” I whispered. “I love you.”
And then it was time for my mother and me to drive home.
Yesterday Andy asked me to play an online Texas Hold’em poker tournament he had won an entry into but could not play (actually he’d had to place high in several tournaments to get into this one). There were 750 people in the tournament and nine prizes, the top prize being either $2,000 or an entry into the World Series of Poker in Las Vegas (which usually carries a 10k entry fee). After two hours of playing I came in 6th place and won a whopping $40. I do like to play and am fairly good at it. It was a fun distraction to my weekend.
The world events of this past week are a shadow-cloud over my microcosmic thoughts. Too much too much. My therapist tells me not to listen, but it is impossible not to hear. While I was sitting on the steps outside his office the day before, reading and waiting for my appointment, a blonde woman with a gold cross necklace asked if I minded if she set her coffee cup down. I told her it was not my building and even if it was, of course she could. We chatted a bit as she pulled out a cigarette and lit it, telling me things about herself – she was from NYC. She didn’t like Albany. She had been mugged twice. A man from the Troy Record newspaper approached us to do a “man on the street” interview about the Boston marathon explosions. I politely declined, but the woman was all excited to talk and have her picture taken for the paper.
“It’s those damn Moos-lums,” she declared. “We have to ship them all back to their own country. (And what country would that be? I thought to myself). “It’s going to keep happening,” she added with certainly, pointing her cigarette at the dark-coffee-skinned interviewer. He grew visibly uncomfortable and told her he could not use her comment about the Muslims. She was unhappy about this, accusing him of being part of the liberal media agenda. When she walked away, he and I talked for a bit. I could tell he wanted to interview me instead, and again I declined, saying “I think it’s sad that the only time we seem able to be able to come together in solidarity is when there is terrorism or disaster.” He nodded in understanding, and I stood up and went inside.
Boston. Texas. Seattle. Denver. China. India. Japan…North Korea…etc. etc. etc. The suffering is everywhere now, every day. If nothing else, it helps remove the envy I spoke about at the beginning of this post, replacing it with gratitude and sympathy. God help us all.
“One way or another, this darkness got to give.” ~The Grateful Dead
“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
He gleefully attacked his lunch with fervor.
cookie mouth
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.”
Andy drove Jonah up to the glaucoma doc this morning and I met them there. The good part of that is I got to sleep an extra half hour and I got to see my Boo. The bad part was the damned operation they’ve scheduled to take the Reticert implant out of Jonah’s eye on the off chance that it’s still emitting steroids, in which case we need that to stop. Jonah, as usual, was very good through all the exams and procedures, the eye drops and pressure gauge. But his left eye is 20/400 (20/200 is legally blind). And so May 14th he’ll have his 5th? 6th? eye operation.
After today’s appointment Andy brought Jonah outside and I stayed behind to talk to the doc and do the paperwork.
“Is there anything we can do to treat that eye…to improve the vision?” I ask doc S.
“Well, if he were a normal boy…” he starts.
That’s all I hear. Yeah. If he were a ‘normal’ boy he could wear glasses that he wouldn’t throw and smash, and he could have the permanent operation to redirect the drainage in his eye, but he can’t…he’d rub his eyes and crush the whole mechanism before it healed.
Why can’t this doctor just answer the question?
He gives me a brochure about glaucoma. It’s the brochure I read months (a year?) ago – the one that says glaucoma is an eye disease that gradually steals your vision and glaucoma usually occurs in both eyes, but extra fluid pressure often starts to build up in one eye first.
I tell him I have read the brochure. I ask him about that first sentence – the steals your vision part. He smiles at me, answers “if left untreated,” and is already out of the room before I can respond.
If left untreated.
Well you just told me we can’ttreat it, I want to yell after his retreating figure.
I realize I’m painting an unfairly poor picture of Dr. S. here, but what I want is the bedside manner of that rare, wonderful doctor who will sit, listen, and speak to you as though you are an intelligent human being (instead of aiming medical terms over your head then ushering you out the door). But people rave about this guy. He has “Best Doctor” awards all over his office. (Today I noticed he’d re-arranged them). I’m sure he is a fantastic glaucoma specialist who’s great with the demographic of the majority of his patients: an aging, docile population of ‘normal’ people. He is kind to Jonah in an off-hand way but never learns that Boo does not converse and is never going to answer his questions about whether or not Santa came or what kind of Easter he had. It isn’t like Jonah hadn’t been there 10 times or so before.
Grandma? Jonah answers when the doc asks him one of these questions – and where can the doctor go from there? I smirk, turn my head. Way to shut him down, Boo.
And so after the doc appointment Andy brought Jonah to see grandma. They all drove to the train in grey car and my mom told me later that Boo was good; they saw a very long train which pleased him very much.
Easter was kind of a blur. Andy drove Jonah up and I met them at grandma’s.
Easter Boo
My mom made delicious food but now it is always pre-packaged up, one for Andy, one for M and me. There is no pretense of sitting down to eat and there hasn’t been for some time. It’s better this way. I love my mom for making the delicious food anyway and for getting Boo a beautiful Easter basket anyway, but I also fight to stay grateful – especially, for some reason, on Easter. I see little kids all dressed up and going to church after their Easter Egg hunts…I am jealous of that whole piece.
I didn’t even go to church on Easter myself. My favorite priest is retired and gone, and I wanted his Easter homily only. I am a one-priest-Catholic, I guess. And now, I love Pope Francis. His humility and simplicity – his gentle ways, his appeal for peace, for the poor, for the helpless. It’s not as if I am a good Catholic – or a good anything, for that matter. But this pope makes me want to identify myself with Catholicism more than any pope before him that I can remember. I like to keep abreast of what he’s doing and I’m so happy that, whether people are Catholic or not, what he says and does will be a big influence on the world. We could all use a leader with a little humility, if you ask me.
Anyway. I don’t really like holidays anymore. My favorite holiday is sleep.
Andy and I are talking, making decisions, struggling to do what is best and right for Boo. I know everything will be okay.
He drove Jonah up this afternoon to visit my mom and me at her house. Jonah’s got the week off from school, and they’re coming up to grandma’s house for Easter Sunday too, so I get to see Boo twice this week.
When I first arrived, Jonah and Andy were already there. At one point Jonah opened the fridge, peered inside, and reached for a bottle of soda. Root beer? he said, placing the bottle on the counter. It was indeed a bottle of root beer. Andy asked how Jonah knew it was root beer. My mom replied that Jonah knew the look of the bottle.
Then I piped up. “He can read,” I told them. (Now I know as well as anyone that he only can read some sight words, but I wanted to see which ones he knew).
I picked up a milk carton and, showing it to Jonah, pointed to the word MILK. “What does this say, Jonah?” I asked him.
“Jonah,” he replied with indifference. Enough people have asked me to look at letters and tell them what I see, I almost hear him say. Not you, too, mama. Cut that shit out.
It has been a weird and wonderful day. I was treated to lunch by my lovely cousin-sister D. She is inspiring and is a genuinely good, positive person, which is rare enough to be precious to me. She listens as well as talks. This is a skill, requiring awareness. She’s better at it than I am. She’s good at it like few other people I know. Her spirit is bright and ready for a smart, engaging, adventurous future. Go D!
Also I was able to talk to a lot of interesting people over the phone at work. When your job is to be on the phone a lot, you may as well find out about people. You can brighten their day, maybe, or be the person who listens to their story of how they built a business up from scratch 16 years ago. You can’t just bullshit your way through caring how somebody’s day is going…that’s transparent, unless you’re genuine. After all, who can’t see through that pitch when it’s thrown at them?
Now I am home, and comfortable with Jack, Almanzo, M, and Seinfeld. It’s all I need right now.
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.
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!
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, 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
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
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 andJ 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
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…
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.
Because he was so good, the doctor got a better look inside his eye then she ever had before.
As horrible as I am at math, I like dates and number puzzles/coincidences. And I love that I know others who are like me in this regard. I even know someone who called her friend on May 6th, 1978 at 12:34 to tell him it was 1 2 3 4 5 6 7 8.
Today is 3/13/13 — and it’s also the 42nd anniversary of the day I was adopted, a baby 6 months old, and brought into the Wink house & family – on Friday the 13th, even. I wish I could have been a fly on the wall to see it all go down. Every March 13th I call my mom and my dad (neither of whom ever remember the exact date I was adopted) and thank them for not leaving me to the wolves, an orphanage, or what would have surely been an inferior adoptive family. I was always loved and for that I am grateful.
I wish I could thank whomever fostered me for the first 6 months of my life, only to let me go. Was it hard to let a baby go? Was it hard for my birth mother? How could it not have been?
Was it hard for my parents to really love me right away, or did they have to grow to love me…kind of get to know me? They changed my name to Amy, which means beloved. For 6 months I had a first name only. Like Madonna, or Adele. I was that cool. Tina, I think they called me. But I’m glad I’m Amy because I don’t feel like a Tina at all.
Jonah has had a calm couple of days, and I hope there is a similarly good report tonight. Today was the first day I really smelled spring in the air, though it was only 45-50 degrees, and something awakened in my blood. Maybe Boo feels it too, and it makes him happier. He does love to be outside.
Here are some random pictures to share:
Boo has very long, pretty eyelashes
sweet baby jack
Jonah, holding Fearless Fred & telling me “3” with his fingers
This weekend I couldn’t see him; I was on a business trip to an adoption conference in NYC, so Andy brought Jonah up Friday evening (the day after his birthday) and I met them at oft-requested grandma’s house.
Evidently Boo was a good boy the night before at the residence, where they threw a little party with pizza and cake. I guess as soon as Jonah understood it was his birthday party, he began incessantly requesting cake. All through the party. Cake? cake? cake? And to be even more specific, what he really meant was frosting? frosting? frosting?
Perhaps for his birthday next year I will give him a whole tub of frosting right at the beginning of the party.
Of course I am being facetious and am in fact trying harder to pay careful attention to what he is eating and drinking. Last post was all about how I want an answer to his aggression, and I figure the first place to look is nutrition & what is going into his body. The school has a nutritionist and I may request the guidelines or whatever to pay more careful attention to Jonah’s diet. In all probability it is me who gives him more “junk” food than anyone. He actually eats his vegetables (and certainly gets no black soda) at school, that’s for sure. Andy always has salad, vegetables, and healthy things for Jonah to eat. I’ve ordered a continuous prescription of chewable Omega-3s; I think he’s been on them for a year or so now.
Most of the limited medical research I ‘ve done so far emphasizes the comorbidity of autism (particularly that which is accompanied by aggression) with stomach problems and/or sleeping difficulties. Jonah goes to sleep early and sleeps well through the night, and he doesn’t have stomach difficulty. Unless you count that the food gets down there unmasticated, as he is wont to shove great chunks of food into his mouth and needs constant reminders to take small bites. Maybe that does mean something. One of the problems with this kind of research is that I find either ‘autism 101’ filler pieces about how behavioral problems are addressed through ABA, sensory toys, social stories, etc. or I find articles and dissertations out of advanced medical journals and can’t even comprehend half of what I’m reading.
So I will dig a little more every day.
On Friday Jonah enjoyed his mini-party at grandma’s house. She’d bought him two helium Happy Birthday balloons, which of course he loved, and as a treat we got him Burger King. Of course, this was topped off by two baths and a very auspicious car ride to see train, which arrived at the crossing just as we did. Jonah rolled down his window and stared at the passing railcars. It was a very good visit. Boo gave lots of hugs and kisses, and requested music? if we weren’t playing it loud enough.
Boo tries to share a french fry with his birthday balloon
“How old are you now, Boo?”
No answer.
“How old is Jonah now?
I’mtenyearold he replies in a word-slur only someone used to his enunciation can understand.
“Guess what, Boo? You’re eleven years old now!”
Evvenyearold, he tells me.
“That’s right, Boo, you’re eleven now. How old is Jonah now?”
I’mtenyearold, he answers, as if to say I just told you.
Gotta love my boy.
a birthday bath – one of two
That night Andy kept Jonah overnight for the first time since we admitted Boo to Anderson, a year and a half ago. And Jonah was good, and it went well, though even when he is good he is an exhausting enigma.
And here I am outside Madison Square Garden,
playing around while waiting for my train
because, underground, Penn Station feels
dizzy with people, everywhere people, blurry-quick,
moving confidently and frenetically in all directions…
and I don’t like it to be down there.
“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.” ~ Albert Einstein
Okay so I promise to not quote any more Nietzsche in rash moments of angst.
I’ve just come to the conclusion that if I want to get to the bottom of my son’s aggressions I’m going to have to do it myself. Should that have been exceedingly obvious to me a long time ago? Here I am waiting for the professionals to put all the pieces together.
For years, the schools have tried to chart his behaviors, to associate actions with causes, to figure out why he acts out and when – sometimes, even, he aggresses right after he has just been given a reinforcer (reward) or is in the midst of a preferred activity. And he’s gotten worse. And he’s getting older – he’ll be 11 on Thursday. Now he’s figured out that he has an arsenal of weaponry at hand 24/7: a built-in play-doh factory of crap to sling and smear. All of this everything that makes no sense HAS to make sense to somebody. I just have to find this person, these people, the neurologist somewhere who will discover a medical, fix-able reason for all of it. Or do I?
There has to be a reason. Or does there? I know autism itself doesn’t really make a lot of sense, but there is usually consistency within its world. Or is there? I’m questioning everything I think I know. I need to figure out where to start, to really start helping my son. If I can help.
Always I secretly judged the autism parents who flew their kids to doctors all over the country, searching for an answer. I assumed they wanted to “fix” their child or “cure” them of autism. Maybe they are just like me.
When Jonah was at a day school for kids with autism, I secretly judged the parents who “shipped their kids off” to residential facilities because they “didn’t feel like” taking care of the child anymore. Now Jonah is at a residential facility. And of course before I had a child, I had a million notions of parenting that were better than yours.
God does hath a sense of humor.
Now I have to do something or go crazy with the merry go round of hope and despair. I want to help my son.
This past Saturday, Jonah was pretty good: he only slapped me in the face once with a soapy backhand and, minutes later, got out of the tub and ran dripping to grab at my mother, who was sitting in the kitchen. No real harm done in either case, and neither incident lasted very long. Of course, we couldn’t figure out a reason for any of it. We rarely can.
Here are some pictures from Saturday. And a video. I welcome all comments. Suggestions. Judgement. I’m evidently working off some karma.
Jonah and an early birthday present Scare-Me-Not, Fearless Fred. Boo will be 11 on March 7th.
The Never Normal 