AJ has had a busy week, a birthday, a confirmation, a prom, and a concert!AJ struggled this week with feeling stressed and full of anxiety. He struggled through feeling as though every inch of him was on fire. My poor sweet boy struggled this week with…Read more
Ready? Cue the eyeballs to roll. I’m sure some of my Facebook friends knew this blog post was coming. So, what does The Buddha have to do with the Icepocalypse, as we called Storm Octavia here in Nashville? And Pandora….Read more
As we drove to the “mental exam” SSI requires to qualify Reid for funding (now that he’s over 18), I prayed:
Lord, guard my heart. Whatever happens, I want to see Reid through your eyes. Whatever they say or determine, doesn’t change your plans for him. Guard my heart and his from the world’s misperception and lies.
I have learned from experience that these appointments, however routine, can leave me in despair. Not this time, I declared in Jesus name.
We walked into the generic medical office chosen to provide an outside opinion of Reid’s capacity, despite the paperwork and access to records I had already approved. It was one block from the Social Security office, in a neighborhood we don’t frequent. Nicer than DMV, yet reminiscent in a way.
Hellooo! Reid welcomed himself at the reception area appointed with framed prints of American veterans erecting flags.
Candy?! Miss, may I have one of those–from that bowl? There were two candy bowls. He gestured to the bigger one by “the lady on the computer.”
We checked in. I answered inane questions, as if I were Reid, on a form and clipboard:
Who drove you here?
Have you ever hurt your self?
Do you see things others don’t see?
What disables you from working?
Have you received treatment for this?
The million dollar question on my mind was: Who writes these questionnaires? The process itself lacks dignity and reeks of ignorance and disregard. I wanted to rephrase every single one.
An underemployed female doctor lacking affect called us the second time. A very standard cognitive assessment ensued.
I’m ready for the interview! Reid said taking the hot seat in front of her laminate desk. The blinds were closed. I sat on the side as directed.
Are you his mom?
Yes. So far this was easy.
When was he diagnosed with autism?
What behavioral issues does he have?
All those associated with the spectrum. Keep it simple.
Didn’t he have any intervention, ABA therapy? Maybe I was supposed to have listed those.
Oh yes. We did all that; it was just 15 years ago. He had a full-on home program, ABA, PRT, Floortime, the works.
Reid watched me, obviously wondering when it would be his turn. Seems like the interview is for me, doesn’t it? It’ll be your turn in a minute.
When it was, she asked his name. Check. Address? Check. Birthday?
June 4, isn’t that right mom? I nodded.
19…. I helped when he got stuck.
That’s okay. She made notes.
How many days in a week?
How many months in a year?
Well, let’s see… He raised his fingers one at a time, in no particular rush.
January is 1, February is 2, March is 3….. He restarted around May…which is 5…then finished strong.
November is 11…December is 12. Twelve months!
Wishing she got paid by the hour, she smirked and moved onto another section.
What would you do if there was a fire in the building?
Get low and go! Reid said without hesitation in all seriousness, recalling two loud fire drills at school in the past month.
Our little-while doctor nearly chortled at the creative, appropo, and succinct response. She modeled a connect the dot numerical sequence. Reid completed his longer one in good time and handed her the paper.
It doesn’t make anything, he pointed out as if to say, what was the point of that?
No, there’s no picture, it took her a minute.
More than once, he took the easy road handing things back to her saying, it’s too hard. He seemed to have some opposite of test anxiety–maybe a new condition we could call “test familiarity.” He mimicked her prompts in anticipation like they were the lyrics on our Top 40 radio station.
She flipped forward in the spiral for harder material, then back when Reid was stumped. Recognizing the drill, he called her out to save time, I need an easier one.
Can he read? She addressed me now.
Yes. She handed him a list of single words in a grid.
Reid played to her expectations, beginning at a labored speed.
When he got to “qua–ran-tine” at the bottom of the page I couldn’t help but think again about getting him a cameo acting spot on Sesame Street. He shines at dramatic decoding, with or without Elmo.
Okay, I’m going to ask you to write some words now.
Oh, like a spelling test!
She was more than cracking a smile now. Reid brings joy to the most deadpan of faces.
We’re all done then. I will submit my report. There should be no problem at all recommending him since he could not complete a 9-5 job 5 days a week.
Well, thank you for your time. What else could I say?
I put my manila folders and sweater in the back seat. Mom, let’s go!
Yup, that was kinda boring but, at least you got to miss school. Let’s go!
Neither this man nor his parents sinned, said Jesus, but this happened so that the works of God might be displayed in him. John 9:3
April to April. It was the working title for the book I thought I was writing before we received The Poppins Revelation.
It’s also a catch phrase in our family. We use it to express how far we’ve been delivered from a crisis in April of 2010. April marks a new year in the Hebrew calendar and commemorates God’s deliverance of the Jewish people from slavery during Passover. In a pretty tangible way, we can relate; God delivered us from the bondage of autism (and more) during April. Every April we watch it come to more and more fruition.
April includes tax day….Jim’s birthday…and Easter. It marks a full circle in our process of becoming rescued, redeemed, resurrected, re- people.
Thinking of April as Autism Awareness Month just pales in comparison.
Autism may be the presenting issue that takes me most often to the Lord. It might be one of the greatest challenges I have faced in life, but it isn’t the only one, or the last one. And it surely doesn’t have the last word.
Four years ago, I prepared daily posts during April. I had to abandon my post about day 13 when the proverbial #$%& hit the fan at our house. All that ensued is the subject of The Poppins Revelation book I am finishing. Through it, each member of our family was changed from the inside out. Frankly, autism is not the villain anymore. It was the vehicle.
This April I’d like to unpack one “Re-word” each day to remind us all that God’s Word is the last word…on life, on autism, on cancer, on trials, on fear, on death. May it fall afresh on you…take root…and make all the difference.
Today’s verse is a double portion: Review and Rewrote.
Every day I review the ways he works, I try not to miss a trick. I feel put back together, and I’m watching my step. God rewrote the text of my life when I opened the book of my heart to his eyes. 2 Samuel 22:20-22
Five years ago yesterday some friends were victims of a home invasion. Two armed men invaded their house at dinner time. The couple had three children. The husband was able to attack one of the invaders and was wresting on the floor with him and he was…Read more
As a fairly steadfast secular Jew, religion in its singular, most fundamental form was never going to be an (al)mighty force in Isaac’s upbringing. Secular Judaism serves up head-scratchers of, well, biblical proportions though. Anyone well versed in it knows that psalms, texts and liturgy form but a slither in Judaism’s complex cultural kaleidoscope.
Even though I’ve always dwelled in the ‘barely-believer’ camp, like so many others an arcane Jewishness has run through my family’s veins. From child to adult, I gorged on the rich pickings of a decisively pick and mix approach. Where a wholesome embrace of certain traditions over others appears arbitrary yet is utterly expected and rather effortless.
If this fluid yet full-of-foibles approach to religion is round holed, then autism is, of course, resolutely square-pegged – meaning Isaac’s Judaism has never really taken shape. Random festivals, sing-songs, all-join-in stories and surprises, full on Friday night dinners, the synagogue as social hub and more, ours is a brand of Judaism that’s more party than preachy. What it isn’t is logical, descriptive, sensible, straightforward.
As such, the cornerstone of the (secular, religious, whatever) Jewish calendar, Passover, passes us by. As the extended family sit down to celebrate, we’re seated elsewhere. It’s a giddy and glorious affair. Children the heart and soul. Colourful stories of Jewish emancipation are read by everybody, symbolic foods – bitter, sweet and worst – are eaten, dares are made. Wine is tasted, the youngest child sings, presents are hidden.
We tried a fair few years ago, ever so slightly. But raised the white flag early on when the hurricane of noise and food and frolics blew Isaac into major over stimulation. The spartan surroundings of a spare room the only solace. Since when we’ve retreated into risk averse avoiders.
I’m denying him something precious I know. But Passover is so bound up with trip wires. Familiar family houses lose their familiarity; people jovially jostling for space and sound. Dinner tables become sinisterly ceremonial with plates and dishes, colour and spice, and much mystique. Groaning – literally for Isaac – with foreign foods that fizz and froth at him. Cutlery, crockery, glass, china – clinking, smells overriding, people shouting, picture books of cartoonish death and destruction howling at him. Not just a sensory sickness. The scalding blur of all this clutter, audibly and visibly also blighting any order, any uniformity he yearns. Comprehension can collapse like a house of cards.
Unreconstructed, this type of boisterous Jewish cultural onslaught is not on for Isaac. The collateral damage too much. For now. Denying can actually be a decent thing to do also. Even the most basic tenets of Judaism have seemed to favour isolation over congregation for us as a family. Synagogues are bustling, busy places with singing and chanting that can become exuberant and painfully loud to many ears, sensitive or not. The protocols are potty. There’s a haphazard nature of services that can mean a swift swing from loud informality to hushed seriousness.
Our one religious-ish experience five or so years ago, around diagnosis time, had been torrid. It was at an informal service in a synagogue for parents and their little ones. Jollily conducted by an expressive teacher, wide-eyed, miming motions that enriched and complemented tales of adventure and imagination. Restless, Isaac was disengaged. The tut tut brigade were on tenterhooks. Unaware as I was of his visual struggles to decode gesticulations (how my daughter instinctively, understandingly, unlike Isaac, apes hand movements and body moves with glee is so instructive). I attempted and failed to inspire him. Leaving in collective anguish meant no return.
Maybe the sorrow of this occasion has amplified in my mind. It happened during the epoch in our familial narrative of unknowledgeable nursery stuff, nasty stares and nerves fraying. There’s an element of self-infliction with all this avoidance, knowing how many, many Jewish communities boast an inclusivity – full of intention and with a degree of success. Welcoming is ubiquitous I know that. But instinct, sociability and illogical rituals are the dominant currencies in so many synagogue environments, making the battle for someone with autism appear demanding. My stance on Judaism therefore remains devoutly in stasis.
Nevertheless, I have a daughter to add to the complicated equation now. Who will nimbly fit into our faith’s idiosyncratic offerings that are full of warmth, love and family dynamics. Issues around identity that I could put off start to surface too – I have a responsibility to at least inform and open opportunities for both my children. And quite frankly, I am laden with a sadness about the absence of Judaism in my house; the silence haunting me a little like a lingering and lost Hebrew melody. So I am beyond grateful to two recent events that forced me out of this spiritual vacuum. And have proposed potential aplenty.
The first being the invitation to Ellie’s Bat Mitzvah (coming of age ceremony for girls). Ellie being a 12 year old first cousin Isaac adores with all his heart. And she loves him back just as much with a quite startling tenderness and understanding. Seizing on the solemnity of the day with brilliant simplicity, Isaac would announce with gusto for days and weeks before that “on Saturday November the 28th, Ellie will become a grown up”. Religion and sermons, ceremony and celebration, heritage, family, culture, discussion, children, a spirited and spiritual unique flavour – Bat Mitzvahs encapsulate that brand of Judaism I’ve talked about with its dynamism, dialogue and general richness. However, just this once, any amount of dwelling on the fissures that a visit could very possibly force failed to begin to chip away at Isaac’s absolute need to be there.
We arrived to witness men and women sitting separately in the synagogue. An irrational concept to most people, let alone purveyors of logic like Isaac. He grasped this potential hurdle neatly however, leaping between my wife and me; utilising it as an opportunity to orientate himself in a new setting as opposed to processing any peculiarity. The mechanism of manically moving about a new location is one he often sets in motion on first visits. It is a method of focussing and stabilising – sometimes with success, sometimes not. My wife, admirably, courageously, unexpectedly, remained composed in the face of his energy. The physicality and enthusiasm was in the main treated with a compassion by most of the congregants.
Indeed, Isaac’s reactions and conversation, sparkling with honesty, spoke mischievously to some of them. “This singing is silly. It doesn’t work”.
His usual candidness induced humour: “Daddy, why are you kissing everybody, stop kissing the women.” “You don’t kiss grown-ups, you only kiss adult cousins and you mustn’t hug teachers,” checking himself before deciding who best to hug.
Regularly he enquired, “where’s Ellie, I need to see her, she’s becoming an adult.” A bit predictably and not a little pathetically, I was displaying a very detectable (by Isaac as well) anxiety. His mini mood shifts and irritations were manageable but always felt on the urge. A few rotten reprimanding voices in the congregation agitated me.
But there were a few moments to really cherish – which were when there was most jeopardy: when Ellie took to the stage to talk to everybody and share her learnings, and the subsequent address by the Rabbi. After some excited cries of “it’s Ellie”, he settled into a calm reverie as she spoke. Bewitched almost by her oratory.
And then the Rabbi spoke, and Isaac, with (as usual) not a trace of timidity, felt the urge to copy him a little as he spoke to the congregation. Isaac announced the Rabbi’s presence with aplomb and sincerity. The kind rabbi asked if he had “a sidekick somewhere”, an “echo perhaps”. To a now warmed up audience there was much merriment as Isaac repeated “echo” a few times and then hushed. Borrowing his school learning, he must have internally compared being at synagogue to being in an assembly, which, the two events now aligned in his head, made himself be quiet and disciplined. A real feat. We were proud and humbled.
Ellie concluded proceedings by announcing that to celebrate her Bat Mitzvah, she was making a donation to the charity, Ambitious about Autism, in honour of her cousin Isaac. “It was an easy decision,” she said, “as he’d taught me so much.” The hullabaloo at the end was a little hellish, what with people rushing around, snacks and wine, the crowd. Leaving via a playground and a neat finish as internally articulated by him, didn’t occur. The distress was transient, as we managed to manoeuvre out of the hectic synagogue, kind of in one piece give or take a lost skullcap or two. All in all it was quite a moment in ours and Isaac’s lives.
Which was built upon considerably a month or so later when my wife and I had the privilege of attending the Bar Mitzvah (coming of age ceremony for boys) of the wonderful Reuben – very similar yet very different to Isaac – who attends the same school. Electing not to take Isaac made sense to him; Reuben is a friend he sees at school, why would he see him not at school? He is a ‘School. Friend.’
A judgement-free, relaxed and open community, in a space dripping with inclusive spirituality, Reuben was honoured and seemed comfortable and comforted in his family’s unique synagogue. Reuben’s year’s preparation of chanting a significant Hebrew portion of the bible came to fruition fabulously. A beautiful voice resounding round the synagogue, a community delighted, heritage honoured, joy everywhere.
The Rabbi’s sermon sent me into emotional raptures. Veering between absorption and a little distraction, Reuben looked on whilst being celebrated completely: “We love you,” said the Rabbi. “You’re kind. Your personality so special. The room lights up when you enter.” “You’ve taught me what the scariest film in the world is!” At which point, unabashed Reuben climbed the pulpit and exchanged hugs with the Rabbi. Afterwards, a lambent Reuben told me, “I did my Bar Mitzvah. Everyone is very proud of me; I made no mistakes.”
This perhaps more than anything has created a path in my mind I can follow to drip a bit of Judaism in my family’s life. This could be Isaac. Yes, we have to show the devotion and immersion of Reuben’s family. Yes that me be unobtainable, unsuitable and a million miles off. Do I have the strength?
But with all the complications and randomness and individuality that comes with both, autism and Judaism can be joined. They can be bedfellows. And that is rather astonishing.
I am in a funk right now. I feel like my entire house is a mess and choking me. I am trying to get our house ready to have a Realtor come look at it. I need solitude. I need beauty. I need… something.I feel stressed and sad. I feel emotional.I don’t …Read more
Pita is giving Liam a shower, while I take a bath, and have some much needed “mental health time.” I turned the on music on my phone, planning to drift into lyrics and forget how really sh!tty this day has been. It didn’t help. Instead, I’…Read more
It’s the second time in a month, so I guess I need to tell you. God’s immense love gift manifested in my concrete day. All while I was out to lunch.The first time it happened, Reid had had a tough day at school. By the time I saw him at 2:30, he had al…Read more
Have you ever stood up to a bully? I don’t think I really had, until last month.
I can certainly recognize one; my inclination for most of life has been mostly to avoid, walk the long way around, or ask Jim to do anything remotely confrontational. But I’m changed by a vulnerable child/young man who seems a barometer for all the bullies and demons of the world, if not a magnet. Hanging with him as closely as I must, exposes them in plain sight. Then, one has a choice, whether to coexist, feed them, or put them in their place. Ignoring or denying them is no longer an option.
After long seasons of skepticism, scrutiny, and experimentation, I’ve emerged convinced, convicted and confirmed that we do in fact have authority in Christ to overcome all the power of the enemy. I had a chance to exercise it last month.
We go straight from school to piano lessons on Monday. There isn’t quite enough time to run home, but we arrive with 10 minutes to spare beforehand. Our routine is to sit in the car with the radio on and brush up on Top 40 lyrics. When a car pulled up in the empty spot next to us, I had the fleeting thought to be careful the two open doors didn’t collide. When its female driver sat still talking on her phone, I dismissed the concern. She’d be gone by the time we were done.
She went off like a rocket, “What the %^&%^;*! You just hit the door of my BMW. What do you think you’re doing?! I can’t believe this…”
Whoa! I circled the back of my car and put my sturdy body between our vehicles. She was up and out bumping her own rearview mirror. “I’ve been watching you,” she addressed Reid. Then me when I got between them, “I saw him acting disrespectful to you. I can’t believe this.”
Her nose was up against the glass of my resolve, close enough for spit to splatter.
Like a reflex fueled by boiling blood, my words stopped her in her tracks, “He has a disability. Don’t worry about your car. We will take car of it. You need to calm down RIGHT now. There is no need for you to be this angry.”
Reid has a tendency to reflect whatever emotion is in the air. Fear, anger, hatred as well as love, kindness, worship. Indiscriminately, his incredible sensitivity to his environment means he mimics the spirits he’s aware of in and on people (even those who are able to stifle it). He can magnify x10 what he senses around him. This is not always convenient.
My main concern was that her display might set Reid off in a dramatic instant replay, thus the physical blockade between the doors. A ding is one thing. Ramming do-overs would not be welcomed. Dousing her explosion like a bucket of water on a campfire was my first intent.
“Reid, I’m gonna close your door now and move the car. This woman is very angry so we are going to park somewhere else.” He seemed fine.
As I walked back around to the driver’s side, the spiritual reality flashed before me. I had just taken authority. I was not afraid. That had been a stand off with the enemy. I recognized rage as a separate entity from that particular woman.
We moved our used Prius to the far end of the lot next to a dumpster enclosure. I forced a few deep breaths to recalibrate my adrenaline level and heart rate.
“Okay Reid, that was an accident. You dinged her car door and she overreacted. I’m not mad, but she is. We might have to pay for her to get it fixed. Here’s what we’re gonna do. First, pray. “Lord, in Jesus name, we bind that spirit of anger and any unclean spirits associated with it.”
“Amen,” he’s heard this before.
“When someone is that angry, I want you to know, you don’t engage physically or take it into your own hands. You take authority over it in prayer instead.”
“Now, we still need to apologize to her in a nice voice. Let’s go over and say, ‘I’m sorry I hit your door’ in a calm voice. Then, you can go up to your lesson and I’ll talk to her some more.”
“Okay mom. I’m calm.”
As we approached, Reid delivered his line through her car window as directed. She hardly let him finish, “I had no idea. I’m so sorry. It’s no big deal. I have this car on a lease. They won’t even notice.”
What had been cause for a tirade was now a moot point. It works people, it works. Whatever had come over her left without a trace.
Praise you Father for the victory we have in you. Teach us to stand in that authority.