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On Waiting

June 1, 2013 By Leave a Comment

Would you like to know why there are so many scriptures on waiting on the Lord? Because waiting is HARD!!

Those of us who live with hidden disabilities as part of our family life are familiar with waiting:  waiting for a diagnosis,  waiting for a change,  waiting for employment, waiting to see how God will resolve a certain situation.

I have grown weary with waiting.  Scripture tells us in Galatians 6:9 “And let us not grow weary of doing good, for in due season we will reap, if we do not give up.”

I don’t know if I’ve given up.  But I do know that I no longer expect God to act quickly or to act in my favor.  I no longer expect for things to fit into neat little packages that resolve quickly and easily for God’s glory.

Below is a picture of my family after running a 5K this past weekend.  The race was particularly significant because my husband walked it with our son.  He had been incapacitated by a knee injury for almost a year, and it was such a blessing for him to be able to cross that finish line with our almost twelve year old son.

I aGirlsontheRun5Km currently in a difficult season of waiting.  Waiting used to be easy for me.  Now…not so much.  I am waiting for my husband to get an MRI scheduled (it’s been over 4 weeks) so that we can figure out why he has lesions on the right frontal lobe of his brain … not an area where we have ever seen seizure activity before.  We are waiting to see whether we will prevail in arguing our case before insurance companies due to Ben’s accident last year.  And I am waiting for a new job.  My current job leaves me reduced to tears each day.  I feel as though I am entering enemy territory each morning as I go to work; the environment is not hostile, but it is not conducive to spiritual or emotional growth, or even any kind of friendship.  I am working far from home and have been begging God for a job closer to home for almost a year now.

Our season of waiting includes so many unknowns.  But God knows.

The other day my thirteen year old came to me as she saw that I was struggling and she said, “Mom … I want you to know something I read this week.” “What, sweetie,” I asked, tears of unbelief and pain clinging to my eyes.  “I read that God will never give us more than we can handle,” she said.  Had any seasoned Christian said this to me, I might have responded in a way that was  … well, less than kind.  But it occurred to me that my daughter may have never heard this before.  I suggested she read Romans 8:28 “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”  And she prayed for me.  My sweet, on-the-cusp-of adulthood daughter, prayed for me (!) that God would not give me more than I can handle.

My girls ran the 5k last weekend. WiRun!th 3500 other students from Montgomery County, they ran. They ran fast. And they enjoyed it.  They remind me of Hebrews 12:1 Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

Lord, please help me not grow weary with the waiting!!

Finally, for those single moms or moms whose husbands are disabled:  How many of you are the sole wage earners in your family? Are you working in the field you studied in college? What type of extended family support do you have? I think I need more support than I’m getting, but I honestly don’t know how to find it.  I could write an entire blog post titled, “On Rejection.”  I am waiting on a diagnosis for my husband, a job for myself where I don’t cry every day, a new therapist in our insurance plan, and practical help with how to deal with rejection (or seeming rejection ) in any form, since I am being asked to do cold calling almost every day as a part of my job (though there is nothing at all about this in my job description).  Any suggestions from those of you who have been there before would be greatly appreciated!

Journeying with you,

Nancy

Contact: Nancy@chosenfamilies.org

Filed Under: Acquired Brain Injury, Bible, Challenge, discouragement, exercise, Uncategorized, weariness

Costume Change

May 30, 2013 By Leave a Comment

On the day I was married, my mother doled out plenty of marital counsel. She’d have done just as well to summarize marriage thusly: “My child, there will be laundry. So much laundry.”

On any given week, I wash ten loads of laundry. More, if the sheets need to be done. More still, if Noah has led our children on the charge of “let’s have an adventure!” which inevitably means they’ve snuck down to the creek in search of the property’s dirtiest, wettest spot so they can bathe in it like natives. Country living is good for the soul. But it’s torture on your power bill.

All in a day's work.

All in a day’s work.

And then, there’s Noah himself, who performs more daily costume changes than Liza Minnelli at the Garden. Every child with autism is different. Each of their quirks is unique. For Noah, clothing is a major issue. Of pre-eminent concern is comfort. Many children with ASD have sensory issues, and for some, the least obtrusive clothing label can feel like a pad of steel wool against their skin. These items of clothing are worn for brief periods of time, and then Noah “discards” them in the laundry. Or, it can be that Noah decides the yellow tee shirt he put on didn’t look as hip as he’d hoped. This one is tried on in the full-length closet mirror and then thrown under his bed. And as all-boy, dirty-toenailed, hayloft clambering as he is, he REFUSES to wear a pair of pj’s more than once, considering it repugnant. I’ve tried laying them back out on his bed after he gets dressed, sneaking them back into his drawer, putting them on top of his towel before he gets into the shower. Nothing works. And this doesn’t even count the nights when he is too hot (change of pj’s – rather than simply kicking off the covers), or too cold (layer on every single pj he has, only to dump all of them in the laundry the next morning). If I had to estimate, I’d probably say 6 of the 10 loads I wash each week are Noah’s alone.

Like every appropriate behavior sought for our children, there is only so much doing, telling, showing, cajoling and begging we parents can do. Such is every parent’s fate, I suppose. In the end, Noah’s quirks with clothing are his, alone. So I have to be content to bite my bottom lip, and count the days until Noah’s old enough to remember where in the machine the detergent goes.

- Sarah

Contact: Sarah@chosenfamilies.org

Filed Under: Asperger, Autism, balance, Challenge, Parenting, Uncategorized, work Tagged With: , ,

Always Enough

May 2, 2013 By Leave a Comment

BluejayI watched two jays squabbling in the front yard today over seed that Grace and I had accidentally spilled from the box. The beautiful, black-capped jays with their cornflower-blue wings showed their ugly desperation for more by screeching and flapping at each other in an effort to grab everything they could. Does a bird have a cut-off switch? It’s said dogs can eat until they vomit. I don’t know whether birds can do the same. How much seed does one bird need? There were tiny scatterings of seed beyond the bigger, central pile. But the birds went straight for the biggest payoff, missing what was hidden in the grass.

I can relate.

Money is tight. As Matt is in sales, we live on his salary, but we advance on his bonuses. Bonuses that aren’t around right now. My dear husband is burning the midnight oil on project after project, but to no (seeming) avail. Each night we pray, “Lord let a deal close.” Each morning, He answers, “Not yet.”

And then I spend a fair amount of time screeching at Him like a Jay.

We’ve already burned through our medical flexible spending program, and it’s only May. With two kids on the autism spectrum, Grace’s eye care, and my own medical needs, we spent $5,000 in less time than it takes a Kardashian to start a reality show. This study from the Brookings Institute, indicating a robust and direct relationship between income and well-being, didn’t lift my spirits, either. Apparently, money CAN buy happiness.

But not necessarily contentment.

“I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.” Philippians 4:11-12

Daily, the Lord reminds me I haven’t missed a meal. I have a roof over my head, cars that run, beautiful, healthy children, a devoted husband, and a few nice things (relics of a past, more…..er…..plentiful lifestyle). He has used our present circumstances to forge a new frugality, and we are stretching dollars like they are made of tire rubber. No food goes to waste, no excessive purchases are made. We have prayed for nearly two years that the Lord might heal our finances. His answer to us has included the practice of looking carefully for ways to get by on less.

I HATE less. I like MORE. But I cannot deny that my heart swells with pride when I shave $50 off my grocery bill, or sell outgrown clothes at a consignment store. It is in the saving of money and our systematic downsizing that we are reminded we CAN survive, and thrive, on less. And in so doing, we are content.

There is ALWAYS enough for us, scattered somewhere in the grass.

- Sarah

Contact: Sarah@chosenfamilies.org

Image courtesy of Ron Bird/FreeDigitalPhotos.net

 

Filed Under: Anxiety, Asperger, balance, Challenge, Encouragement, Family, God's presence, growth, Hope, stress, Uncategorized

Outside the Lines

April 18, 2013 By Leave a Comment

“Mom.  Noah got in trouble at school today because he didn’t follow directions in art class.”

“Grace! How many times have I told you not to tattle on your brother?”

Noah comes sliding in then, face buried in his DS, not making eye contact with me.

“Hi mom.”

“Hi honey. How was your day?”

“Good.”

This, of course, is his standard answer. Not once has he elaborated on this unless the idea to do so strikes him organically.

He puts a piece of black construction paper on the kitchen counter and keeps on pressing buttons. It is a picture of a clown sketched in striking detail and complexity, but there is certain darkness to it. This is not a clown I would like to encounter in a dark room. To be frank, it’s kind of terrifying.

The clown in question.

The clown in question.

“This is an amazing picture. Can you tell me about it?”

“It’s a clown.”

I stifle a laugh.

“Yes, I can see that. Why is it frowning?”

“Well, the art teacher told us to make a smile like a moon, and I did mine upside down. I had some trouble with it.”

“Did you? Grace said something else may have happened.”

He looks up momentarily.

“Ok. I drew a frown because I thought it would be more unique.”

“Noah, do you like clowns?”

“Of course not! And you’re not a big fan of them, either!”

I’m choking on laughter again. “That is true, but this was about following directions.”

“Mom, I just wanted it to be unique.”

It must be hard for Noah and kids like him to be shoe-horned into convention every day. I know he fights the urge (not always successfully) to argue with his teacher about what he deems appropriate, worthy, or right every day. It’s in his nature to be solitary and contrarian. And school is about being exactly the opposite.

But, that doesn’t excuse his behavior. He is not permitted to break with instruction just because he wants to. I loved his creativity in the picture, but I’d have been happier to see a smile.

Particularly on one of those terrifying clowns.

- Sarah

Filed Under: Asperger, Challenge, Executive Function, growth, Uncategorized Tagged With:

State of Mind

April 9, 2013 By Leave a Comment

Noah is an easy crier. But he comes by this honestly. His linebacker-sized father can cry on a dime. Once when I was pregnant, I caught him weeping at a Huggies commercial.

Noah likes to hide his tears. Not even the doctor is permitted to see him cry when we’re at his office to have Noah’s strep or ear infections evaluated. There is no convincing him that it’s okay to cry. Instead, he hurries to find a place to retreat, cover his face, wipe his eyes with fevered intensity. Restaurant bathrooms are a good getaway, for there, he crouches under the downward tilt of the automatic hairdryer and lets the hot rush of air evaporate his tears.

I am not much of a crier, myself. I would rather put on a pair of oversized sunglasses and make a joke than I would let you see me ball. I find something of weakness in it, and so like Noah, I can find crying shameful.

So imagine my surprise this week when both Noah and I let loose a flood of tears over things that might ordinarily have seemed less than tragic. I have come to realize it was due in large part to our states of mind.

For Noah, he was overtired. There is no self-regulation in him (as is often the case for kids with ASD), so he will run until his legs can carry him no further and his lungs are set to burst with effort. He will seem perfectly modulated one day, and then the next, he’s on the floor screaming, terrorizing his siblings with extra force, refusing the simplest of tasks. We had, this night, mentioned the prospect of a small change, with opportunities for all the kids to weigh in. Just bringing it up set Noah to sobbing.

As for me? Well, I too, was exhausted. After hosting a birthday party for Jesse on Saturday that lasted well into the night with flashlight tag, Matt and I unloaded the entirety of our portable storage unit on Sunday. Every last box, bin, toy and furniture item. I managed to bruise my shin and torque my elbow, and the next day, I crawled my aching body to the bed for a two hour nap with Jesse.

I might have left it at that. I knew I was overtired. Instead, I put on my riding boots and went out into the field to get the pony and our thoroughbred mare. After I finally cornered the pony, who made me chase him a good 20 minutes before capture, and in a moment of apparently misplaced confidence, I swung a leg over him in the field, intending to ride him bareback into the barn for our lesson. The minute I got on, I instantly regretted it. He swung his head around, and took off galloping toward the herd, with me clutching like a monkey to his long mane. It didn’t last long. In a moment that seemed like it would last forever, but was in reality probably half a second, I was swinging over his shoulder and heading toward the hard, hard ground.

I fell off and landed square on my pride.

It was too much for my body to handle, and mentally adding it to a long list of second-guesses in this period of my life (“This, too, is doomed to fail!”) I just rolled over and started sobbing. Jesse was calling from the barn, “Mama, are you ok? I will call daddy!” All I could moan was, “Just give me a minute!”

Where the Lord Himself stepped in was with the snuffling sound I heard between my sobs. I felt something on my head and looked up. There, around me in a near-circle were all six horses in the field who had come to stand around me after I’d fallen. Mozart, the largest, and a famed steeplechaser in his day, had rested his muzzle on my head, as if to ask if I was alright. The Lord shepherded me back to the house with my 4-year old Jesse, who held my hand, and asked if he could take me to the hospital in his ambulance. Then, when we finally got back into the house, I felt the Lord stifling a laugh when I fell on the floor crying in Matt’s office, telling him what had happened and that I felt like a failure. Jesse jumped right in: “You can do it, mom! You’re still young!” And there the Lord was, in the end, as Matt looked at me, held my face in his hands, and said, “I have total confidence in you. I love you, and I believe in you.”

What I have learned is that humility comes before honor (Proverbs 18:12). And who else is more humble than s/he who cries? Jesus himself cried at Lazarus’ death – because of His personal loss and the great love for His friend. He is one acquainted with our sufferings – a “man of sorrows” who was despised by many (Isaiah 53:3). I understand now that sorrow is a perfectly acceptable state of mind; it isn’t shameful, and needn’t be hidden. Even if our state of mind is one of increased fragility, and the pain is deeper than usual, or the body hurts a little too much, we are known by a God who understands our tears, who loves us despite – and because – of them. When we’re very lucky, He even send us horses to comfort us as we cry.

- Sarah

Filed Under: Asperger, Challenge, Change, Emotions, Family, God's presence, shame, Uncategorized

Everything and Nothing

April 4, 2013 By Leave a Comment

Autism awareness month, which began on Tuesday, means everything and nothing to someone who is living with it first-hand.

It means everything in that it pervades every moment of every day. Autism is something of which I am already aware: it is an experience from which I do not get a break, and therefore its call to recognition by those in positions more visible than me, means everything. It is the silent question behind the taunting kids at school (“is it because Noah’s different?”), and the quiet realization behind every self-stimulating behavior of Noah’s. It is the “oh, he must be overstimulated,” or “there are too many people here,” or “he does not like the feel of my hugs” thoughts. It is everything in every moment of every day with my son.

Which means it is also nothing. It is a part of Noah, and not the whole. It is the “this is what he has, not who he is,” and the “I don’t think I’d want him any other way” ideations that rattle through my heart each day I spend with him. It is the refusal to make excuses for him, and the toeing of a hard line, and the working to make things the best they can possibly be because an ICD-9 code and the DSM and the XYZPDQ’s don’t have a clue what he’s like in real life. It means nothing because I feel the Lord has called Noah to something great because of what he’s been dealt, and in spite of it. It is nothing he cannot handle, and apparently nothing I cannot handle, despite what my weary eyes and aching hip joints told me this morning.

It means something, though, for those who are struggling with a new diagnosis, or seeking a diagnosis, or to find the money to pay for services. It means something for those struggling to throw off the stigma of autism, and to legitimize what their children have in the face of critics who persist in calling it simply bad behavior, or the result of lax parenting. It is for the “something” people that we ought to pray; those struggling to find their way, and enough strength, and the Lord’s hand. For them, someday, autism awareness month will mean nothing, too.

- Sarah

Filed Under: Asperger, Autism, Challenge, community, Courage, Encouragement, Journey, Uncategorized Tagged With: , , ,

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

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: , , ,
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