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…
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.
“Before you speak, ask yourself – Is it necessary? Is it true? Is it kind? Will it hurt anyone? Will it improve on the silence?” ~ Sri Sathya Sai Baba
How hurtful we can be without meaning to be. You’d think I’d be used to being hurt, both physically and emotionally, but I’m just not. And ’tis a horrifying thought to know I also have spoken quickly, without thinking, without asking myself these questions. We all do it, I imagine. This quote is so wise, whoever Sri Sathya Sai Baba is. I learn lots by researching the person who uttered a quote I love.
I saw Jonah on Wednesday at Albany Medical Center for his pediatric rheumatologist appointment. E and J are back as the team who drives Jonah to and fro, but they do so much more than that, as I’ve mentioned. I love these people and look forward to seeing them almost as much as I look forward to seeing Boo. He did well at the appointment, mostly, but part of that was due to the caring doc’s speed and efficiency. No waiting. None. We go straight to a room and as soon as she sees him, Dr. B is on her game and handling everything. It’s refreshing. I don’t know how she does it, but I’m more grateful for her than she will ever know.
I should have taken pictures but I keep forgetting my camera, or forgetting to charge my camera, so I’ll end the post with some more random pictures. I like putting pictures in my blog post. Tomorrow I’ll remember the camera when I go visit Boo, I promise. I wish I had it at his doc appointment. He was parroting in classic echolalia form. “Jonah, sit on the table.” Over and over. He’d had enough at the exact moment she finished gently pulling and prodding his joints.
There are so many things I wonder about my boy. I know the other kids like to cuddle with the caregivers on the couches and watch TV or play Wii, but Jonah doesn’t like it. I know that much. He wants to stay in his room a lot. They coax him out when they can, it seems. I hate thinking about him alone in his room. If that’s what makes him happy, should I be more okay with it?
I wish I knew more about what he likes to play with, and who he wants to be with, and things he says/does/sings. They don’t tell you a whole lot beyond basic information but I want anecdotal stories. I want to hear about it when he does good things, or funny things…not just whether or not he had “behaviors” that day, or how many, or what he had for dinner and whether or not he threw his plate. I want to know more about my son.
I know he is sick right now and I want to hold him close and let him lie on me and suck his thumb while we watch Barney or the Wiggles. Of course I just described a fantasy. Even if he were here in my home that scenario is highly unlikely, unless he were really, really sick. He’d hit at me, pull my hair, scratch my face. Is he angry at the world? Is he angry at us all because we just don’t get it, whatever it is?
Some weeks it’s easier to have gratitude than others. Sometimes I don’t sit down to add a blog post until I’m motivated by a hurt, worry, depression, shame, anger, or some other emotion that drives me to write. I guess it means every blog post is skewed by its catalyst emotion. I can’t do much about that, but today’s emotion, even though it’s Friday, is soul-tired.
I’m praying for a lot of people. A lot. They all have serious needs, problems, grief. I don’t know what good the prayers do but I like to send them up anyway. I’m a little unconventional with that, but I do pray from my heart and my heart always answers back you are not alone in your hurt. You are not alone. And that’s the gift you get back when you pray for others; it’s all mirrored back at you, offering perspective and empathy and, if you dig deep enough, peace.
Blah blah blah. Some pictures:
Me and an unidentified large bear, outside the Bass Pro Shop in Springfield, Missouri.
Mama’s lean body, daddy’s tan skin
old days, exploring in the forest near home
Waterboy
daddy holds Jonah’s hand and grandma walks beside them – away from his residence and across the campus to the car.
my first ever no-capitalization post, i think. i am playing e.e. cummings for a few paragraphs and oscar is dead. i write only because i need to release a few things tied up inside me…
andy picked jonah up at anserson this morning and the other children in his house had been picked up the night before (we have yet to even attempt an overnight visit), and the ride up was okay. quickly things went south, though, once they got to albany, and jonah spent the majority of his time weeping uncontrollably, despite presents from santa and bath and turkey sandwich. he wanted a car ride to the train (which never came) and at some point during the ride, inexplicably, his face froze and melted into sadness, anguish, pain. he wept and wept, then threw his coat, shoes, and socks at andy – most of which i was able to deflect.
Eventually there was nothing to throw. So Jonah kicked the back of the seat, hit hard at his window.
Andy pulled over so he could hug Boo, but Boo pleaded mama? so I got out of the car and I opened Jonah’s door and leaned in and hugged him tight. Then tighter, giving him sensory pressure, loving him loving him loving him, until finally he un-tensed, collapsed into me, and wept harder – crying and sobbing. We cried together, the back door open on the side of the road. Then we’d calm him down and we’d get 500 more feet down the road and it would happen again. No go back to Anderson? Hot dog? Bath? Pa comin’? — confusedly, desperately.
Andy drove, and I cried, and Jonah alternately calmed down (and even giggled once) before again becoming angry and then falling backward into something like despair.
Inside my mother’s house, after the car ride, he punched me hard in the face and and kicked me in the ribs. He head-butted Andy, trying to bite, enraged and frustrated. We had to just lie with him on the carpet for a good long while
and whatever it isI’d pay a million dollars to fix it. He breaks my mother into a thousand pieces, every time.
There is too much to say and who the hell wants to read about this anyway on Christmas Day?
I will post something better, later. Funnier. I’ll be David Sedaris. Just not on this particular December 25th. Lo siento. And I cannot forget Connecticut; I pick at its horrific entirely like a scab, imagining the families, those familes and their unthinkable Christmas pain.
We sometimes mourn for what we do not or cannot have any longer, or at all — for things and concepts; dreams, wishes, and people – we mourn for what is irrevocably gone. But also we mourn for what will go on and on and on and on, painfully and unceasingly beyond our capacity to fix.
Resentment:Def. A feeling of indignant displeasure or persistent ill will at something regarded as a wrong, insult, or injury – real or imagined.
Andy has brought Jonah to three post-op doctor appointments this week. God knows what would happen if he did not live where he does and have the job(s) he does. E and J have been unable to bring him to his last 4 appointments. What does the school do if there is a child who needs an eye surgery and doesn’t have the transportation to get there?
The laser surgery was medically successful, at least initially, but I had to take the whole day off Monday because everything happened excruciatingly slowly.
This video shows Jonah, gowned up and ready to go, stuck in a room Does he like Dora? the nurse kindly asked and we said yes and we said sure and we said thank you when all we wanted was to get going. Andy is standing between Jonah and me as Jonah walked his circles in the small space of the room.
Five minutes after this Jonah had a major flip out, throwing himself on the floor in the hallway, kicking, screaming, pulling hair, biting. Nobody came out to help us.
Eventually we got him back to the room and calm.
The operation itself was quick. Jonah got sick afterwards and kept wanting to itch his eye. so I used a tissue to gently press on the eye, and I kissed it soundly, over and over. Kiss eye? Kiss eye? Yes, Boo. Kiss eye. Of course kiss eye.
It was more difficult than usual to send him back to school, an hour and a half away from me, where I see him so infrequently and have so little control over what happens to him. I have to trust. One of the check-in people on eye operation day noted that Jonah was at a residential facility. She mentioned that her daughter was autistic and how she would never, ever trust anyone to take her precious baby away from her. “I don’t trust nobody with my baby,” she declared. It was as if she had slapped me in the face. Who says that to someone whose kid is already in a residential facility? What do you know about why we did it? I wanted to yell.
Jonah & Andy, walking the halls before the room where you gown up.
– – –
And so I crawl along, filled with dread, with grief and terror for this world, with my heart broken for those at Sandy Hook in CT. I read all the intelligent arguments about mental illness, parenting, gun control, and violent games/TV, and I find no answer in my heart — and that, maybe, is what frightens me most. My mental state becomes fragile when I am confronted by humanity at its worst.
Which did not help when very recently I was the target of verbal anger, delivered in front of others and with a ramped-up rage that left me in disbelief, filled with embarrassment, and completely stunned. Despite a nonverbal apology later for the “confusion,” (not the behavior), I think maybe too many people enjoy railroading over people like me, who don’t fight back. One witness, upon seeing my face fall, told me coldly to “suck it up.” Maybe I really don’t belong in society, such as it is, because that kind of behavior seems so foreign to me that I have no response but tears. It will pass, it always does, I regain the strength and something restores my faith and I keep on going.
Yet there is a lot that’s wrong with all the people in this world. With our priorities and with our ignorance and with our anger. All of us. There are a lot of things one can say about me but I will say this for myself: I may be meek, but I am kind, and I don’t take advantage of people’s weaknesses or vulnerabilities, and I care about how other people feel, and I have never treated anyone the way I was treated today. So perhaps people like me really shall inherit the earth, like the Bible says. Watch out then, bullies, because things are gonna get a whole lot more mellow. (Quite rightly).
If I were a Buddhist all of this would play out in my head and heart quite differently. I would be thankful to this person for their challenge to my ability to be compassionate and understanding. I would consider them my teacher. I would not only forgive instantly but also revere the perpetrator – very similar to Jesus’ “turn the other cheek.” That’s some serious shit to truly take on, though, which makes me admire earnestly practicing Buddhists and Christians all the more. Perhaps I should just up and go to Plum Village for a while. I need to pound the lessons into my head.
Of course this whole story – every little bit of it – is nothing compared to what has happened and continues to happen in Newtown, CT. Burials, burials. An entire community with post-traumatic stress disorder. Pain-filled awakenings from nightmare hours of darkness. God only knows the horror. God help all the mourning people. I just can’t muster much joy in Christmas this year; I have had the wind knocked out of me and am only a stranger, miles away. But I can pretend, and the pretending will become real. Smiling begets smiling. Breathing allows for release.
Hope.
At least I am still able to crawl along. To let go of the resentment. Breathe, breathe. Let it go… Feel gratitude.
I did something very similar to my dorm room door, junior in college – only we glued real leaves to the wall…
We visited his classroom and spoke to his teacher, who gave us a folder full of Jonah’s work sheets and art, then told us Jonah has good days and bad days, which is teacher-euphemism-talk for he’s really difficult, randomly, and it’s frustrating. He is one of the most verbal kids in the class, so they don’t use PECS with him anymore. I guess Jonah has a vocabulary of sight words and he really loves occupational therapy. His teacher is young, pretty, and interested, with a sharp mind for noticing important things and a kind heart to care about the children.
There are teacher’s aides as well in the class, and occupational/behavioral therapists, and art/music teachers, and they all work together to educate these mysterious children like my Boo. Amazing.
What a beautiful day, too, sunny and warm and autumn-pretty – after visiting the school, we walked to Jonah’s house and then to the recreation center, where they had bouncy bounces set up, grills cooking up yummy food, and activities for the kids. We waded through the groups of kids and teachers until we found Boo.
They’d actually managed to get him to wear this headband with two curled black pipe cleaners and red leaves on the end of each one. He used to hate stuff on his head — hats, hoods, Halloween costume accessories. When or why or how this changed, I have no idea. In some ways Jonah is very malleable; he morphs almost magically into a different kid, one little corner of his brain making seemingly arbitrary decisions in matters of head coverings and food preferences, who he requests to be with him in the backseat, what he wants to drink: appoo ci-der? milk? cranbewwy soda?
When we caught sight of him, he was standing next to one of the picnic tables and seemed to be doing okay, but as soon as he saw us, he wanted out. And so he got a bear hug from Pa (my dad) and then my mom and Andy and I brought him to Andy’s apartment.
Jonah’s newly renovated house – Jonah’s window overlooks the playground behind it, and the pool behind that.
Jonah leads the way to the car.
Jonah being silly as his dad helps him with the car harness
When we’d completed our usual tour of bath, lunch, and car ride, Jonah requested the “grow-shee-store?” At the self-checkout lane Jonah started screaming in what I can only describe as “obnoxious joy.” I told Andy to go ahead and take him out while I weathered the stares (usually Andy’s privilege) and paid for the food.
And after we’d been back at the apartment for a while, my mom and I left. My car drove us home okay, but when I tried to run to the grocery store later in the day, the steering wheel was shaking and the car pulled heavily to the right. I guess tomorrow I’ll have to drive it (gingerly) to the shop by my work and leave them a note with the keys. Sigh.
I was just thinking: It has been a long time since I cried over leaving Jonah behind each week. I don’t know what that means, if it means anything at all.
I will also tell you this little not-about-Jonah story:
With my favorite pastor ever (the recently retired Father Noone) I’m joining a committee to support a school being built in Fontaine, Haiti. Father went to Haiti and helped cut the ribbon on the opening of the first three grades. The money needed to build the school (and, before that, a well) was in large part funded by special collections at the church from which Father Noone retired. And now, that same church has explained to Father that, due to financial challenges, they will be unable to continue to support the Haiti project except for a second collection twice a year (or something equally lame).
Disappointment at this decision aside, I am helping Father Noone raise the money needed to keep the 105 students there for another year. It’s just $300 per child. That’s $25 a month for a year. Or, as the commercials like say, “for just pennies a day” — but it really is true. Hell, you could spend $300 just buying school clothes and supplies here in the states.
These are children who would otherwise have to walk 4 miles a day round-trip to school in another town – in a country whose villages have no electricity nearly three years after the 2010 earthquake. Unimaginable. Try to picture that happening here, how enraged we would all be. Hell, I remember an ice storm some years ago and being frustrated at its four day interruption of my normalcy.
Anyway, if you can help (in any amount), please click on the link and donate from there. If not, I’ll never know. I wouldn’t judge even if I did. Every cause wants money. I just want to help Father and this school he believes in as much as I can. This quote by a wonderful author (who had to write under a male pen name to get published) describes Father Noone perfectly —
“In spite of his mildness and timidity in reproving, every one about him knew that on the exceptional occasions when he chose, he was absolute. He never, indeed, chose to be absolute except on someone else’s behalf.”
― George Eliot, Middlemarch: A Study of Provincial Life
I should call Jonah’s behavioral therapist and go over some plan for what to do about all his aggression lately…
I thought it just yesterday at work when glancing at a picture of my smiling two-year-old boo made me remember what it was like when I had a child who had only autism, hold the violence.
But she called me first. When my cell phone rang last night around 7pm I knew it was Jonah’s school from the area code. I heard her voice, softly accented and smart, kind and comforting. I like her very much; I think she truly cares about the kids and works hard.
She told me she wanted to talk about Jonah’s behaviors and I said yes, thank you but very little else as I broke down suddenly and quickly, and silently thank God, everything in me held tight, squatting crouched at the top of the basement steps. Tears came in quiet, steady little streams down my face as she spoke, making two distinct darkened wet spots on the red carpeted landing…I stared at them, teeth clenched…holding my breath…my silence broken only by the occasional word of affirmation. Right. That sounds good. Thank you.
“Jonah’s been here more than a year now and he is so much better at working with others and in groups than when he first came,” she started. I don’t have to be a psych major to know this tactic: present a positive first, then a negative, then another positive. It’s a good plan but she knows I know what’s coming.
I’m unsure what snapped something inside me and made me cry that way, but something did, and when she talked about how Jonah’s behaviors have continued, how some have gotten worse or more intense, I wanted to scream. They think perhaps it is the medicine affecting him a bit, and she thinks also he is so smart, my Boo, that he seeks attention to the point of aggressing or poop-smearing or whatever just to see what happens – to watch who does what – to be the center of attention.
I think she’s right. He’s an only child and was very used to being so. Maybe he’s mad about sharing so much with so many other kids. Not material things, not tangible things, maybe…he wants games and fun and snuggles and chases and it’s all got to be about him…maybe.
We don’t knowthey’re not sure …she is going to try a positive reinforcer squeeze toy or something he can hold tight and squish – a stress ball or stuffed animal or something – a comfort object, as they would say in The Giver. I wonder too if a weighted vest would help. Sometimes I feel like I want to crawl out of my skin, abandon body altogether, this cage of bones, and fly away. Maybe Jonah feels it too (although he probably wants to grow gills and swim away).
I want to help him. I thought he would get better there. I didn’t realize the placement was necessary but also, quite likely, permanent. The only way I could do it at the time was to leave that part out and not think about whether or not it was a place where he can eventually come back home. All I knew was I was losing him and I needed quite desperately to lose him and it all felt like crawling through fire.
It feels like crawling through fire to consider him being away from me like this indefinitely, aggressing, battling blindness and arthritis and whatever the fuck else we don’t even know about.
It’s all so different from anything I imagined, this path. God hold me steady on it.
Unless you just stumbled upon this blog, you know my son Jonah lives and goes to school at the Anderson Center for Autism. We could no longer keep him home because of his violently aggressive behaviors. Jonah has come a long way in the year he’s been at Anderson! So many parents like us depend on this school for their child’s fundamental education. Anderson is holding a Fundraising Gala on October 6th. The idea is to raise money for the school.
I am not one to ask for money often, but today I am. For Jonah I will.
I am so grateful to the Anderson Center…
If you can give any amount, I will appreciate it very, very much. (Choose gala donation when you get to the donate page). Your information will be kept private and your donation will be processed on a secure server, though you will be acknowledged in the Gala Program and of course can use your donation as a charitable contribution on your taxes.
And if there happen to be (or if you know) any owners of restaurants, Bed and Breakfasts, stores, hot air balloons, art centers, museums, bookstores, grocery stores, amusement parks, gyms, hotels, airlines, spas, hair salons, gas stations, toy stores, resort properties, etc. reading this– or if you have a superfluous surplus of iPads, those things/gift certificates/gift cards would be amazing to have for the silent auction.
May your kindnesses come back to you a thousandfold!
I’m starting my blog vacation now…be back in town on the tenth. I am so excited I am almost shaking just to think about crossing the threshold of Laura Ingalls Wilder’s home, kept just as she left it when she died three days after her 90th birthday, on February 10th, 1957.
(Yes, I know what a geek I am).
Some Jonah pictures and maybe a video until I return:
Isn’t this a great picture of Jonah and Grandma?
A video of Jonah being on-purpose bad and somewhat gross and us not doing much about it. We choose our battles.
solving complex algebraic equations
disappearing into a dive
Bye, people who use vacation time to go to beaches on oceans and lakes instead of the center-of-the-USA Missouri Ozarks home of a dead children’s book author! You’re missing out.
The Never Normal 