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When There’s Time

March 19, 2013 By 1 Comment

I’m sitting at the kitchen table. Grace and Matt are gone for the day, and I’m home with two crabby sons: Noah is crabby because he has strep; Jesse is crabby because he’s three. To compound things, we probably pushed them too hard this weekend. Matt and I both suffer from the same disease – the one marked by lack of a shut-off valve. Matt’s plagued more than I am because my body generally gives out before his, but both of us – we don’t rest on the weekends. We run. Karate, gymnastics, physical therapy for Noah, Home Depot, cleaning the barn, organizing more closets and more shelves, entertaining, running, running, running.

The snow falling outside today is small and light, like flour let loose from a canister. And it falls slowly. It falls in such a way that I long for slow-ness myself. The Lord is here with me at the table. I’m sure He is smiling at that comparison.

“I don’t know how to slow down, Lord.”

“I know. I made you, remember? I know your struggles. Why are you running so hard?”

“Because there is so much to do, and so little time. There is never enough time.”

“There is always enough time.”

“But Lord, my list! There are so many things on it. Mundane things, like laundry and cleaning and errands. And pressing things, like taking care of the children and the animals, and paying bills, and buying groceries. And then there are the things I want to do – my riding, Lord. And my writing. But sometimes I’m so overwhelmed by it all that I just really want to go to sleep!”

“So sleep. Come to me, you who are weary and carrying so many heavy burdens, and I will give you the rest you need.” (Matthew 11:28)

“But when I do that, I wake up to even MORE things to do! Lord, why didn’t you make a 36 hour day?”

“Because your body couldn’t handle it. At the end of this perfect day I’ve created, you are forced to sleep. You must stop what you’re doing, and rest. Even I rested, you know. And I told the apostles to do the same (Mark 6:31) … Have you noticed the snow?”

I drop my head. I think I know what He’s going to say.

“Yes, Lord.”

“Sometimes there is much snow. But sometimes, it is merely a few light flakes, quiet and pretty enough for a dusting, and nothing more. It may be heavy and wet, or dry and airy, falling faster, or slower. It moves as it must, for the purpose to which it’s intended, and what the clouds themselves contain. Snow is not always a blizzard, my child. And neither can you pour yourself out so completely or quickly all the time. There will be nothing left of you for the most worthwhile pursuits if you shake out all you have until you collapse.”

Noah is coughing in the family room, and telling me his stomach hurts. His fever is back, and I get up to medicate him, and bring him more water. His sicknesses are particularly pathetic. He moans and screams in pain, particularly intolerant to it. This is consistent with studies indicating those with Autistic Spectrum Disorder have a hyper/hypo sensitivity to stimuli i.e., above average range of feeling or super-sensitivity, first written about in 1949 by Bergman and Escalona. (Contrast this with my daughter, who sliced her foot open on a beach rock in Virginia, and couldn’t wait to tell everyone about it – refusing pain meds and waving to people from her wheelchair at the airport on the way back home like the Queen of England).

I return to my seat and my coffee in the kitchen, my conversation with the Lord.

“You will finish what you need to, when the time is right.”

“WHEN the time is right? Couldn’t I just get it all finished and be DONE? That way I can rest!”

I can hear Him laughing. “And miss what I’m trying to teach you about prioritizing and resting now?”

“Okay. I give. Two things on my list today, and no more.”

“Just one, child.” He looks into the family room where the boys are watching tv, comatose under their blankets. “They need you right now. I willed Noah’s sickness for reasons you do not know, but today, it is so that you yourself might slow down and just be with them.”

“Whatever’s left on your list, you can finish later. When there’s time.”

- Sarah

Filed Under: Asperger, balance, Challenge, Encouragement, Family, God's presence, Journey, rest, Uncategorized

What Stays Behind

March 14, 2013 By Leave a Comment

We took our time with the move. It spanned weeks; nearly a month and a half from start to finish. Matt’s rationale was that it would allow us to get things organized a little at a time, rather than facing a tower of boxes to be unpacked in short, harried order. He was doing ME the favor, of course. I can tell you only one set of hands in our house is chapped from marathon handling of packing paper and cardboard boxes, and it ain’t Matt’s. (Matt will tell you that I married for looks and brute strength, so I suppose I’m satisfied with this arrangement….)

This past weekend was the last we would set foot in our old home. A few items in the basement and the garage, some trash to be bagged, the garage door openers set out on the island, and we were finally finished. The task of cleaning fell to me, and I went through each room, kicking up dust and memories in each one. I happened by chance to end my day in Noah’s room.

My mother asked me a few days ago if it was hard that Saturday when we tied up all the loose ends; when I cleaned the rooms my children had spent six years playing, sleeping, living in. I remembered my time in Noah’s room, and choked back tears. “Yes,” I said. “It surprised me, but it was.”

There were divets in the baseboards where Noah had pulled his storage bench off the wall to retrieve a fallen DS game, shoving it back with too much force.  There were synchronized stickers on his closet – hold overs from his “Cars” phase. Bits of scotch tape marred the wall where he’d taped up a star wars poster, near the door with the Jabba the Hut sticker, under which Noah had written “Jobu” because he didn’t know how to spell Jabba, and was apparently uncertain as to whether anyone would recognize the identity of the space villain without a name tag. Anakin Skywalker was spelled “Ancin” in similar fashion. The ceiling was punctuated with dents from Noah’s bunk bed mattress, reminders of nights spent changing sheets in the dark, and trying to shimmy a mattress back onto a top bunk because its occupant refused at all costs to sleep on the bottom bunk. None of these things – these bits of our life – were coming with us. They were staying behind. The hand that pushed the vacuum started to quake.

Then the vacuum hissed, and spat out into a perfect square of light on the carpet, the tiny key that Noah used to lock his journal. The very same key that had gone missing two weeks after he received the journal. I reached down and picked it up and from the corner of my eye caught sight of Noah pushing his bicycle up the driveway. It was the bike my dad had taught him to ride, the bike he liked to “escape” on, showing up randomly at various homes in the neighborhood – taking off before I could even notice he was gone. I thought then, “This is the last time I will watch him push his bike up this driveway.”

One last time.

That’s when I started to cry.

“But Ruth replied, ‘Don’t urge me to leave you or to turn back from you. Where you go I will go, and where you stay I will stay. Your people will be my people and your God my God.’” (Ruth 1:16)

The divets and marks and stickers were staying. The feel of the carpet under my feet, the way my voice echoed in the empty hall. These would be left behind. But the boy outside, all gangly arms and gappy teeth, and his angel-faced brother, and grinning, warrior sister – they were coming with. To make new memories, to mar new walls.  My people, my tribe, our God – they were all going with.

I ran a seeping nose across the sleeve of my fleece.  Then I pushed the escaped tendrils from my ponytail out of my eyes, bent down and put the key in my pocket.

It was coming with, too.

- Sarah

Filed Under: Asperger, Attachment, Change, Emotions, Family, Uncategorized

The Coldest Dish

March 7, 2013 By 1 Comment

Capitalization on Emotional Frustration.

Noah’s in the revenge business. He prides himself on Machiavellian tactics and instincts. He’s hired his services out to his sister, seeking payment out of her piggy bank. He’s left booby-traps and nasty notes around the house. Is this a by-product of brotherhood? Are boys more natural score-settlers? An older boy in student care at Noah’s school is giving him grief, and night and day, Noah talks about “getting even.” I wonder if he feels this burden more intensely because he’s somehow marginalized by his peers. We mothers never fully know what transpires after we drop our children off at school, and I am quietly terrorized by the thought that this little boy is ridiculing Noah for being “different.” Because Noah is. And I see it more clearly every day (this, a part of parenting a high functioning autistic that I intensely dislike – the part where things get worse before they get better).

Noah could have passed this trait onto his little brother Jesse, or perhaps it’s just the natural dynamic of male siblings. But in either case, it’s such a prominent theme in our home that Jesse recently suggested a “revenge meal” by telling me he wanted to eat both Hot Pockets for lunch, rationalizing that by eating both, when Noah went to ask if he could have one for dinner, “dere won’t be any lef, because I eat dem all.”

When Noah feels as if the world has him under its heel, it does little good to remind him that vengeance is the Lord’s alone (Romans 12:19). He still seethes and grits his teeth and makes a fist. Noah loves the Lord, alright. He just doesn’t trust Him to even the deck. I am certain his thirst for revenge is what keeps Noah in karate – a sport in which we thought his interest would fade (for Noah, if you play a few notes, you’ve mastered the piano; throw a few footballs, you’re Peyton Manning. You get the idea). The self-defense/combat mechanisms of the sport entertain his ninja death squad fantasies. Noah doesn’t like feeling like he’s been “had.” But then, neither do I. More than once, I’ve let others laugh at my expense, only to go home and quietly seethe about what I should have said at the time. I wish I could say that I’d chosen to turn the other cheek at the moment of offense, but I’m not that magnanimous. Keeping my mouth shut is only the result of a too-slow wit. “Argh! Why didn’t I think of that at the time!?” Noah feels this, too. I can tell this when he comes to me, and says, “The next time Johnnie says XX, I’m going to give him a piece of my mind!” Yes, we’re both very brave after the fact.

Really, both Noah and I need to thank the Lord we don’t say what we “ought to” at the time. Rolling over could be the Lord’s way of gently pushing our cheek in the other direction. Maybe He knows we’d be in a heap of trouble if we started running our mouths. Maybe He knows the heart of the offender, and he can see through to the hurt behind the insult. Maybe He’s just teaching us what’s required to be “at peace with everyone” (Romans 12:18). And though I’d like to say I’ve had one good Rocky versus Drago moment in my life, it’s probably for the better that I haven’t. I find that most of my “gut” reactions do better when they don’t get very far.

I’m sure that’s just how the Lord intended it.

Sarah

Filed Under: Asperger, Autism, Challenge, Conflict, growth, humility, Social skills, Uncategorized

How Hard It’s Not

February 28, 2013 By 1 Comment

Today I sat down to write this entry, intending to enlighten, amuse and exhort the ChosenFamilies.org readers. In regaling you with stories about Noah, I reveal to you a window through which you might view the reality of life with a hidden disability. That life is often awkward. It’s challenging, and can be complicated, but it’s funny. There are many happy endings as we learn from Noah and his Creator. Our burden is comparably light. Even as Jesse’s own diagnoses have emerged to intensify our circumstances, I can’t plead impossibility of burden. I particularly cannot plead it today, when I opened my laptop this morning, and found this:

http://usnews.nbcnews.com/_news/2013/02/27/17112877-cops-two-boys-grandmother-found-dead-after-she-takes-them-from-day-care?lite

Another lurid headline pulled me in. Then I scrolled to the bottom, and there it was:

“Jeremy and Brenda Perry, parents of the two young boys, told NBC Connecticut that Denison had a gun and she had a mental illness.”

A mental illness. A reference to a “wide range of mental health conditions — disorders that affect mood, thinking and behavior,” according to Mayoclinic.com. A pattern of being that painted the whole canvas of Debra Denison’s life, and from which there was no escape. My mind went to a dark place as I imagined how she could possibly have thought that killing her grandsons and then herself was the right choice – if that was, indeed what happened. My heart aches for the Perry family, as I wonder what the prologue to this story would have revealed: why Debra was permitted to pick the boys up from daycare? Whether she was medicated for her illness? Whether she was being monitored by a psychiatrist or other mental health professional? Why she had access to a gun?

I wonder most of all why the healthcare system in America is failing those with disabilities. “But your family is doing fine!” you say. Why hasn’t the system failed Noah, or Jesse or me? Because we’ve probably spent $50,000 on medication, therapies and doctors (this is a conservative estimate). Because we’ve worked tirelessly at early diagnoses to alter history’s course at the earliest possible junction. Because we are our own best advocates and we never rest at getting “better.” We are our own champions. God has blessed us in giving us to each other. Yet there are those that must manage mental illness on their own. This is nothing short of impossible, as the way of thinking needed to get better is the very thinking absent from the start.

There is no “funny” in this post. Which is too bad, because Matt never ceases to be amused at the way I laugh when I’m writing (no one thinks I’m funnier than I am, unfortunately). I wish I could be more light-hearted today, but I am hearing the voices of those who are un-medicated, undetected, untreated, unhappy.

“He died for us so that, whether we are awake or asleep, we may live together with him. Therefore encourage one another and build each other up, just as in fact you are doing.” 1 Thessalonians 5:10-11.

I am lifting them up today, and I am lifting up those who care for them. I am praying for them, and asking the Lord to let us better see and help them whose lives are harder than ours.

- Sarah

Filed Under: Anxiety, Asperger, Challenge, Change, Church Response, community, Family, General, growth, Uncategorized

Open for Business

February 21, 2013 By Leave a Comment

Routine tasks often prove the hardest for my Noah. Tasks of a higher emotional and intellectual input are nearly impossible. This move of ours – wherein we moved a mere 6 miles from our former home, kept all children in the same school, and did it all slowly, as unhurriedly as possible over the course of a month so as to prevent any psychic earthquakes – sent Noah into a tailspin. I should have guessed this was going to be the case. There is only so much cushioning you can give an Aspie when his world begins to change. So, in the wake of the final push of our move, I should not have been surprised that Noah’s behavior fell somewhere between chaos and rage. On the day itself, Noah blasted past us in the foyer, hurtling down to his room, yelling over his shoulder that he had a project he was going to do. That this was his “plan for the day.” Before we settled into our new home, Noah had packed everything from torn posters to bits of tape he’d salvaged from the walls. There were figurines with missing heads, carnival slinkies stretched beyond use, shoes with shredded soles. He was unable to distinguish between useful and superfluous, between broken and functional. Everything that could possibly be thrown away made it into a moving box and came with us. Unpacking this all gave me apoplexy. For an almost 9-year-old, a request to send him to his room to pack his belongings is a natural one. One assumes that there will be some sort of self-governance that eliminates the moving of – for lack of a better term – “junk.” But Noah’s “junk” moving was just the beginning. Once at the house, this “project” of his ate the better part of a day, and I didn’t bother to check its progress because it kept him out of my hair. When he yelled from the bottom floor, insistent that I come see what he’d done, my jaw hit the floor. He opened his closet door to show me this:

Getting down to business.

“It’s my DS store,” he said. And sure enough, on every shelf, Noah had aligned his DS games with cases upright and inserts facing out, just as they are displayed at Gamestop. Now this was a puzzle to me. The boy who packs things like books with missing pages, or plush animals vomiting their stuffing; who throws every lego he owns in a giant box, but tosses the instructions (insuring that he’ll never construct the pieces from the set in their intended way, again), THIS boy had taken the case for every DS he owns and arranged them with the precision of a scientist. WHY? This was also a puzzle to me. All I can imagine – and this is where I must be content to let the questions end (because sometimes guessing is all I’ve got) – is that this was Noah’s way of not only controlling his environment, but controlling (channeling?) his emotions through the precise, repetitive task of touching and working with the familiar things that he loved.

Grace, ever the pragmatist, folded her arms in front of his closet. “Uh, that’s great, Noah. But you have one little problem. Where are your clothes going to go?” We still don’t know. For now, they’re still mostly in boxes on the floor. His room’s a mess, and so is mine. We’re not quite open for business. But we have a little peace.

~ Sarah

Filed Under: Asperger, balance, Challenge, Change, Emotions, Family, Uncategorized Tagged With: , , ,

The Mole Hole

January 31, 2013 By 1 Comment

“Look at that baby,” I cooed to my husband leaving church on Sunday. “How precious does she look with her little face sticking out of that pink car seat cover?”

Matt looked over at the family, fussing over their kids, stuffing arms into coats. “Ah yes …. The mole hole.”

I laughed. “Yes! The mole hole! Do you remember the black one we had for Noah? He would grin at us from inside, and his little head was so sweaty when we pulled him out!”

When he was six months old, Noah’s mother, a first-time parent, believed he would be frozen in a state of suspended animation if his portable car seat (the “bucket,” we called it – apparently, our early parenting years were beset with plenty of pseudonyms)
wasn’t covered with his elastic-banded, fleece lined, water-repellant cover with the perfectly-sized hole for his head. In the most inclement weather, the hole could be closed with a lightweight flap, and Noah would emerge as safe and dry as the moment he went in. The mole hole, we were convinced, was the best of all the baby paraphernalia we toted.

Now, Noah’s room is his mole hole. It is the place to which he retreats when he needs a separation from the overly stimulating distractions of his world. I often find him in the corner of his room, where it is darkest, where the space is tightest, where he clicks away on his DS, lost in Mario something-or-other. He still prefers to sleep with his head mashed into the corner of his bunk bed, much as he did when he was an infant, and he would press his head into the crib bumper as if to wear it like a hat. Something about the snugness of that covering calmed him.

Now, I am Jesse’s mole hole. He is calmed by little else than my arms around him, tight like a vice. He wants the squeezing of his body, and the rubbing of his back, and it will not do from anyone else. In the middle of the night, somewhere around 2:00 a.m. give or take 30 minutes, a forceful knock sounds on my door, and I shuffle to open it and find Jesse standing there. Every night. Jesse gives me no chance to argue or rationalize him back into his bed, but darts past me like a tiny locomotive and pulls himself up into my bed. While I am not a “family bed” advocate, and Matt and I have taken great lengths to encourage our children to stay in their own beds, Jesse will not be otherwise convinced that where he sleeps after 2:00 a.m. is with us. And so I have given up fighting it.

Don’t tell Jesse, but I am (despite months of cyclical fatigue and interrupted sleep) kind of okay with it. The feet pressing into my thigh and the head in my armpit don’t so much bother me, as remind me. They remind me that Jesse, like Noah, is “unique,” and that he is as motivated by anxiety as by anything else. Perhaps he cannot articulate what rouses him from sleep so that he tears down the hall and into our bedroom. Maybe it is a nightmare, or a pain, or a fear that cannot be described, and so for now, I am alright with where his night prowling takes him.

But I too, need a mole hole. I need the Lord’s covering to calm me. I need that safe place, that quiet place, that dark place. I need a mole hole where I might close my eyes and feel the Lord’s presence above and around me, and I can press my head close to Him and feel His peace. We have just received an autism spectrum diagnosis for Jesse, and now in our second round with ASD, we are more aware of what titanic efforts must be expended on his behalf. We are tired just to think about it.

“He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.” Psalm 91:4

When my sons emerge from their mole holes, their worlds are more manageable, their fears are quelled. What refuge their spaces have given them is sufficient to heal them for a moment. The dark stillness is good to provide them the separation they need, so that when they return they are strengthened and ready, until they must retreat once again. My mole hole – that quiet place under the Lord’s wings, full of dusky mysteries – does that, and more.

But for all time.

- Sarah

Filed Under: Asperger, Autism, Challenge, God's presence, Uncategorized

Building a Mystery

January 24, 2013 By Leave a Comment

A move does interesting things to an autistic. For individuals who are categorized by, among other things, their need for routinization, a change like this can be catastrophic in its proportions. For neurotypicals, the Homes and Rahe stress scale lists a change in residence or living conditions as major contributing factors to the accumulation of overall life stress (and ultimate potential for physical illness. On a related note, Noah’s sister – not coincidentally – has croup). So, one can only imagine what it does to the psyche of children with Asperger’s, for whom a change in routine or predictability can wreak emotional chaos.

Noah is desperate for a sense of contribution to the process of our move. The exercise of control over his circumstances is one way he attempts to limit his own explosions, ticking, and emotional outbursts. On Saturday, during one of our many trips to the new house, Noah positively lost his mind when he dropped a toy on the floor and cracked its exterior. He spent nearly 10 minutes in the bathroom, crying and screaming and wiping his eyes.

When he’d calmed down, he dug into a box of sundries in the living room and began pulling out items he wanted to “decorate” with. I explained that decorating was the last thing we were going to do – that the boxes needed to be emptied and the shelves needed to be cleaned; that we had so much left to move. He didn’t listen. Time after time, he returned to the box, pulling out vases and sculptures, plates and lanterns. He told me to come to the tables he’d decorated, and take a look.

“I need you to say something nice and complementary about what I’ve done,” he admonished.

“Something nice and complementary,” I said. Noah didn’t laugh.

The table was set in a perfectly symmetrical pattern. The same number of coasters, and the same coasters on each side. The large letter in the middle evenly dividing both sets. On the other side of the room, he balanced a wooden plate holder on each of two candlesticks. Between them both were two ceramic birds. Behind them, two matching statues. Then, this morning, he told me of the prior night’s dream. “The king told us to build a castle, and we stacked floors on top of each other, and they were teetering. And there was a soldier on each side, and a light behind each soldier…” He even dreams in symmetry. That mind of his, it’s always building mysteries.

All things same and balanced. The antidote to chaos.

This predilection toward symmetry isn’t unique to our son. In fact, it’s been reported that autistic children recognize symmetry better than do their non-autistic peers. But in our home, and for the present, this represents more than a simple neural function. Instead, I see it as a plea for order. As the boxes pile up in increasingly empty rooms, and we shuttle another load of furniture between homes, I am watching Noah and finding ways that he is stacking and sorting and separating to make sameness and order. I long to protect him from his own anxiety, but at the same time, help him to appropriately deal with it. This isn’t the only time in his life things will get messy.

“No, we declare God’s wisdom, a mystery that has been hidden and that God destined for our glory before time began” (1 Corinthians 2:7).

Noah’s mind is a mystery. The wisdom of God is mysterious. It is a function of my personality to be plagued by the frustration of ignorance, always asking why. But there are some things the finite, simple mind cannot possibly know. So for now, I must be content in the not knowing of things, and in the trusting that what I don’t understand is for good in the end.

-Sarah

Filed Under: Anxiety, Asperger, Autism, balance, stress, Trust, Uncategorized Tagged With: , ,

Rope Burn

January 17, 2013 By Leave a Comment

“When you get to your wit’s end, you will find God there.” So proclaimed the sign outside a little country church near my house. I am pretty certain these witty, theological colloquialisms come from a book somewhere, but they are eerily prescient. Because lately, I’ve had a bad case of rope burn. Rope burn is what happens when your young, thoroughbred ex-racehorse decides that the hoof pick is a snake, and she rears up like a scene out of the “Black Stallion” while you’re clutching the lead rope like a monkey. Rope burn is what happens when you’re lashing your belongings to the back of a pick-up truck and someone on the other side of the truck – as desperate as you to speed the transition into a different house – pulls on the rope the same time you do. Rope burn is what happens when you clutch your circumstances tight, and despite your best efforts, they shift and hitch and jerk themselves right out of your control, taking the skin on your palms – and your wits – with them.

I have rope burn, all right. The Lord snatched from me what passed for circumstantial control so that I could find Him standing right in front of me, holding the rope. That’s how a tug of war is won, you see. One party loosens their grip; the other takes up the slack. And boy, that rope hurts on its way out of your hands. But “No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him” (1 Corinthians 2:9), and I’m at my wit’s end.

So I suppose I’ll loosen my grip.

- Sarah

Filed Under: Anxiety, Challenge, God's presence, Uncategorized Tagged With: , ,

Foolin’

January 10, 2013 By 1 Comment

As the New Year dawns on a cold morning, I am lying in bed, willing myself not to hear the yelling and scuffling down the hall. Matt is still sleeping, mouth agape. He told me once that he could fall asleep on a set of bleachers during a basketball game, having perfected the skill during high school and a run of sporting events he shared with his two brothers. He can also turn off his hearing at will. It must stem from the same neurological pathway in his brain – the one that lets him not hear kids outside his door though they’re hollering at each other in full voice.

I, on the other hand, have mother ears. The kind that let you hear your crying child at the end of the hall, through two closed doors, over the hum of a box fan, in the middle of the night. So over the growing din of that morning, I heard a little hiss of something over the carpet, attended by a tiny crackle of paper.

The kids were sending us notes again, I thought. And then I threw a pillow over my face and pretended it was still only four in the morning and I had 3 hours more to sleep.

When Matt and I finally uprooted ourselves from the bed approximately 20 minutes later, I found, as I had suspected there would be, a note at the bottom of our bedroom door.

“DEAR MOM AND DAD – I HAVE RAN [SIC] AWAY FROM HOME. SIGN [SIC] NOAH”

Aw c’mon, Lord! This ALREADY? I’m only seven hours into the New Year!

I bolted past Grace and Jesse in the hallway, screaming, “Where is your brother?? Where IS NOAH!?”

I yelled downstairs into the basement, pulling on a coat over my pajamas at the same time. “NOAH!”

That was when he jumped out from behind the couch screaming, “SURPRISE!”

Now, the time between my reading of his note to Noah revealing himself was probably a minute or less in length. But a minute of suspended heart rhythm, a minute of terror seizing the gut, a minute of “what do I do next?” is a minute too long. It was a minute that probably took six months off my life on the back end. So I’d like to apologize in advance to Delores Hornstein at the Shady Oaks retirement community, because as it turns out, I’m not going to make that shuffleboard tournament after all.

I’m panting now, doubled over in the kitchen. Noah trots over with a gap-toothed grin. He has no concept of why I am worried.

“NOAH! Why did you write that note? I don’t understand….”

“’Cuz I was foolin’ ya.”

Foolin’ me into thinking he’d left me forever. I’m remembering now when Grace was a tottering infant and Noah compulsively rubbed her head because (1) it was squishy, and (2) it made her scream, and he “liked it.”

That mind blindness of his is a real *****!

“Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.” (John 14:27)

Do not let your hearts be afraid when you think your son has disappeared, but instead, remind, remind, remind him of what other people could be feeling as a result of his actions. Instruct, instruct, instruct him on principles of safety and awareness. Even when he’s foolin’.

- Sarah

Filed Under: Anxiety, Asperger, Challenge, Parenting, Uncategorized Tagged With: , , ,

The Light in the Being

January 3, 2013 By 2 Comments

I awoke on New Year’s Day with an inexplicable lightness in my spirit. Matt brought me a cup of coffee as I lay in bed (by anyone’s account, a great way to start the day). I am by no means a morning person, needing a good 5 minutes on the edge of the bed with half-closed eyes before I can even set foot in slipper. Which is why the brightness in my voice gave Matt cause to remark, “Well, you’re quite perky this morning!”

I grinned sleepily at him from under the quilt. I couldn’t remember the last time I had felt so…secure. So excited to continue. So ready to run.

“Yes I am!”

“Why? I mean, the present circumstances…”

“You’re right. It’s not exactly logical. But I’m still happy!”

In his brand new Christmas sweater.

On December 27th, Jesse was attached to a spider web of EEG sensors and laying in a hospital bed in order to evaluate him for epilepsy. The report from our Neurologist came through the next day, stating that though we are still waiting for the EEG report, he’s largely convinced Jesse is – like his older brother – also on the autism spectrum (though only a formal ADOS evaluation will tell). Having suffered from a low-grade flare through the holidays, I was beset by daily nosebleeds, including one “hemorrhage” that went on for 5 hours. We had one foot out the door to the E.R. because I looked like the president of some suburban moms fight club. We are moving and between homes. But we’ve recently found out that the contract for our new house may have fallen through too late and that, for most purposes, we’re now technically homeless.

HAPPY. Believe it or not, I am.

If it seems as though my posts take on a somewhat Eyeore-esque self-pitying tone, well then, you got me. I’m prone to listing woes – partly, because listing things helps me remember what needs yet to be tackled, and partly, because Matt and I are convinced we’ve hit the worst of our stretches, until another one comes along. In a way, my listing serves as a reminder that it could always get worse. Here though, there is no self-sympathy. I list to illustrate the illogicality of my happiness.

And to tell you from whence it springs:

“Yet this I call to mind and therefore I have hope: because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” Lamentations 3:22-23.

From the book of Lamentations – which chronicles the destruction of Israel and the horror of their fate after Babylonian invasion – comes an unlikely verse of promise and light. Because of the Lord’s great love, WE ARE NOT CONSUMED.

Because of what God has promised us, we are not consumed by illness or bankruptcy or loneliness or loss. We are not swallowed by the distress of fear or hunger or uncertainty or despair. We are strong in the face of adversity. Our beings are too light to be devoured by the darkness, for God in us is the antidote to every shadow.

To you of the hidden disabilities and the obvious calamities, I wish you a Happy New Year. May you ever fix your eyes on the Lord’s bright promises – those that make you safe, and strong, and swift.

- Sarah

Filed Under: Asperger, Autism, Challenge, Change, Contentment, Courage, Epilepsy, stress, Uncategorized Tagged With: , ,
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