You are here: Home / Archives for Asperger

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: , ,

Seeing Red

May 16, 2013 By Leave a Comment

Jesse has an infatuation with firefighters. And, for that matter, fire trucks, fire engines, and firehouses.

Not unusual, you say? Little boys love firefighters, policemen, army men, you add? True. So, let me elaborate a bit.

He’s had 2 fire-themed birthday parties, dressed as a firefighter for 3 consecutive Halloweens, owns 4 fire fighter costumes, 1 fire fighter umbrella and raincoat set, 4 model fire house sets, 22 fire engines and 31 firefighter figurines of various size. Each day, he methodically lays out his firefighter costume, invites me into his “fire house” and shows me his gear before suiting up. We have made no fewer than 6 impromptu stops at fire stations we’ve passed on our journeys, and have waylaid something like 10 firefighters from their very real duties in order that Jesse might sit on one of the engines, wear a helmet, or ask “where is your black and white fire dog?” (He’s been often disappointed to learn that Dalmatians are mostly relics of a by-gone firefighting age. If he sees a Dalmatian in his firefighter story book, he LITERALLY expects to see one at the fire house. That literal nature? Yep, that’s ASD.) There are even firefighter coloring books, firefighter pajamas, firefighter DVDs. For a period of time, all Jesse would watch on television was a 1987 firefighter training video we were able to stream through Netflix. He could recite it word for word. It started out as cute. Sometime after viewing 15, it got downright annoying. He had all of us, and PARTICULARLY his older, emotionally labile brother Noah with ASD himself, seeing red.

As you’ve probably guessed by now, a restricted or limited interest (one that plays out in real life more like an obsession) is one of the hallmarks of an Autism Spectrum Disorder (ASD). These are kids who know every Star Wars character ever introduced, or who can name every dinosaur that ever trod the earth. But I was surprised to discover recently that the MORE restricted the interest, the HIGHER the anxiety – that the latter often incites the former. http://ultimateautismguide.com/2011/06/autism-news-anxiety-restricted-interests/  And, with anxiety being the defining emotion of Asperger’s and other ASD’s, it goes to reason that these kids are destined to experience both – some, more intensely than others. I thought Noah was one for restricted interests, but my sweet Jesse has shown the capability to outpace him red engine for red engine.

This morning, I walked into Jesse’s room and found yet another pile of engines and figures to be re-shelved:

Just a small selection.

But this time, instead of seeing the mess, I HEARD what he was saying. So I sat down.

“Can I visit your fire station?”

He grinned, freckles and dimples squinched up. “Yes. Yes, you can.”

Then I asked Jesse why he liked firefighters so much.

“Because.”

“’Because’ is not really an answer, Jesse. Why do you like them more than anything else?”

“Because they put out fires and save people.”

They “save people.” I exhaled, and squeezed my arms around him. I will do what I can, with God’s help, to make him feel safe and ease his worried mind.

And in the meantime, I suppose there are worse things he could be interested in.

- Sarah

Filed Under: Anxiety, Asperger, Autism, Change, Family, growth, siblings, Uncategorized Tagged With: , ,

A Walk in His Shoes

May 9, 2013 By Leave a Comment

Tennis shows and soccer ballJesse threw a fit this morning. Why? Because we asked him to put his clothes on. “I want to stay in my jammies!” he screamed. “I don’t want my clothes!!” The clothes were scratchy and cold; his pj’s were soft and room temperature. Later, at the breakfast table, he yelled at me when my dabbing with a napkin proved inadequate to remove the syrup from his jammies. “Get it off!” he howled. “It’s still sticky!” A light touch is like a thousand tiny feathers to Jesse; a warm room is an oven. He has been known to strip completely naked in the wee hours, only to greet our saucer eyes and gaping mouths the next morning with the explanation, “because I was hot!” He prefers dark rooms to light, spicy to bland, movement to stillness. As a child with ASD, Jesse’s world looks, feels, sounds, and smells differently from that of the neurotypical, and he therefore exhibits strong preferences for the things he likes or alternatively cannot tolerate. His brother, Noah for example still cannot eat a meal if there is a candle in eye range, because something about the consistency of the wax that sets him to vomiting.

In recognizing the differences between the sensory processing of ASD and non-ASD individuals, YouTube video footage proved illustrative recently. To the extent it could, it demonstrated what it’s like to walk in the shoes of someone who has a sensory processing disorder. And it gave me a near-instant injection of patience with Jesse. After a lunch consisting of a veggie wrap with hummus (the child can eat hummus by the spoonful, I believe somewhere he was tricked into believing it was peanut butter) I went to put my son in his pj’s (clean, of course – with no sticky residue). I did it slowly and quietly, rubbing his back as I did, bringing the stimulus in his world down to a manageable level. I buried him in his “stuffies” (his stuffed animals) as he requested, and lay with him until he got sleepy. And then I put his tiny shoes back under the bed – the ones that I found could also fit my grown-up feet.

- Sarah

Contact: Sarah@chosenfamilies.org

 

Image courtesy of Stuart Miles/FreeDigitalPhotos.net

Filed Under: Asperger, Parenting, Sensory Processing Disorder, Uncategorized Tagged With: , ,

Black Dog

April 25, 2013 By 9 Comments

“I don’t like standing near the edge of a platform when an express train is passing through. I like to stand right back and if possible get a pillar between me and the train. I don’t like to stand by the side of a ship and look down into the water. A second’s action would end everything. A few drops of desperation.” – Winston Churchill (1874-1965)

At the height of World War II, one of the world’s foremost leaders and the champion of Britain’s campaign against the Nazis struggled with a black dog whose appearance could never be predicted, and whose mastery was never guaranteed. When the “black dog” of his depression appeared, there was little but a gleam of discernible hope preventing Winston Churchill from acting on those drops of desperation. Charismatic, popular, and brilliant with a seeming inability to comprehend impossibility of circumstance, Churchill was later speculated to have been living with bipolar disorder.

He shared the plight of mental illness in common with some of the world’s most luminous minds, including Van Gogh, Beethoven, Handel, Gandhi, Abraham Lincoln, Theodore Roosevelt, Sylvia Plath, Mark Twain, Virginia Woolf, Frida Khalo, and Edgar Allen Poe.

I won’t bother to bore you with a more contemporary list of celebrities suffering from mental illness, or more specifically, from bipolar disorder (and there are many). I will only reference a young man with bipolar disorder – Matthew Warren – who rose to ultimate celebrity through his untimely death. At the risk of over-elucidating the need for public awareness and acceptance of those suffering from mental illness, I cite Matt because it seems that within the Church, there are blocks of brethren that persist in wrongheaded notions about mental illness and, beyond that, how to treat their brothers and sisters when tragedy strikes. To quote Frank Viola (Christian Post guest contributor) in his blog likewise referencing the Matt Warren tragedy, Christians tend to fall in one of three camps where mental illness is concerned:

“1. Mental illness is demonic in origin. So the antidote is to cast out the demons that are causing it.
2. Mental illness is psychobabble. There’s no such thing as a “mental disorder.” All so-called mental illnesses are just sinful behaviors. So the antidote is for person to repent and get right with God.
3. Mental illness is a physiological disorder. The brain is a physical organ just like the heart, the thyroid, the joints, etc. Thus if someone has panic attacks or bipolar disorder or schizophrenia or chronic depression or ADHD, they have a chemical imbalance in the brain, not dissimilar to a hyperthyroidism or high blood pressure or arthritis.”

My blogs are traditionally long, so I’m going to respond to these philosophies in as little time as possible. Mostly, because I’m trying to remain civil.

1. To say mental illness is demonic in origin shows a patent disregard for Scripture and a misunderstanding of Christ’s mission on earth. Matt Warren had a personal relationship with Jesus Christ. The Word is clear that one cannot serve two masters (Matthew 6:24) – a concurrent occupation by both the Holy Spirit and a demon would be impossible. Further, Christ’s mission was not to interfere with the aggregate of human knowledge about the world and to further confuse us in our path to the Father, but to redeem those lost to sin. It would have made no sense for Jesus to actively collude with a primitive misunderstanding of the nature of mental illness by calling it “demon possession,” instead. In Luke 9:1-2, we’re told that Jesus gave the disciples “power and authority to drive out all demons AND to cure diseases, and he sent them out to proclaim the kingdom of God AND to heal the sick” (emphasis added). The Bible distinguishes these activities, separating demons FROM illness and disease.

2. To say mental illness is psychobabble – that “mental illness” is just the consequence of sin – is ridiculous. If you sin by cheating the government on tax day, you will feel sadness or guilt. These emotions are proof of a quickened conscience, evidence of the Holy Spirit’s conviction. These emotions actually support the premise that the sufferer has a proximity to God sufficient to elicit them (contrasted with the “seared conscience” referenced in 1 Timothy 4:2 of the one who is unaware or apathetic toward his sin). Even Christ himself experienced sadness – and is described as a “man of sorrows, acquainted with grief.” (Isaiah 53:3) So if sadness = sin, then was the entirety of the New Testament wrong about Christ’s freedom from sin? Also, what a cruel Savior we would serve if He brought “mental illness” on everyone who sinned! What of the criminals who’ve done awful things but maintained their sanity? Where is their mental illness? And what of the separate classes of mental illness? The cognitive disorders, such as dementia and Alzheimer’s, and the developmental disabilities, such as autism and ADHD, are included among these. Does it make sense to conclude that these patients are all in sin when (a) their illness would prevent them from even UNDERSTANDING they were in sin? And/or (b) their illnesses (in the case of developmental disabilities) were present from birth? How do you explain the “sin” for the child born with autism? How much sin was my Noah in when he was diagnosed with Asperger’s at age 5? And if you’re trying to pass those developmental disorders off on the parents’ sin, that’s not going to fly.

“His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the works of God might be displayed in him.’” (John 9:2-3)

3. Mental illness is an actual physiological disorder. And the weight of medical, biological, and neuro-scientific evidence agrees with me. If it wasn’t, then the (a) medication used to treat it wouldn’t work, and (b) the MRI’s, FMRI’s, SPECT’s, PET’s, EEG’s and MRS’s used to view structure, electrical impulses and connectivity within the brain would show nothing different for the neurotypical, than for the mentally ill. The last time I checked, demon possession and un-confessed sin weren’t reparable through modern medicine.

It’s because mental illness is an actual, physiological disorder that I was utterly shocked by some Christians across the web, who posted comments after Matt Warren’s death such as: “Suicide happens soon after your [sic] stupid enough to read ‘The Purpose Driven Life;’” and “Poor Matthew denies God’s love with suicide.”

“Brothers, do not slander one another. Anyone who speaks against his brother or judges him speaks against the law and judges it. When you judge the law, you are not keeping it, but sitting in judgment on it. There is only one Lawgiver and Judge, the one who is able to save and destroy. But you – who are you to judge your neighbor?” (James 4:11)

Did the authors of comments like those above read that passage from James?

I hope I haven’t come across too stridently. But my heart is so wounded for the Warren family, and I am so shocked by the pervasive ignorance and cruelty of some people in the Body that reigning in my tongue proved challenging. The bottom line is that those living with mental illness are struggling with challenges the rest of you – you 75%’ers, you neurotypicals – cannot possibly comprehend. We are told – commanded! – to love the “least of these,” to love our neighbors as ourselves. How much MORE SO ought this to be in the case of the Body of Christ? We who are separate from the world – in the world, but not of it? I urge those who are uneducated about the nature of mental illness to do their research. I urge you to pray for the mentally ill. I urge you to stop your hateful diatribes and lift up in prayer those whose lives are marred by a pain you do not know.

And now, finally, I’ll sign off.

I have to let out the dog.

- Sarah

Sarah@chosenfamilies.org

 

Filed Under: Asperger, Bipolar Disorder, Depression, Diagnosis, hidden disability, mental illness, Uncategorized Tagged With: , , , ,

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:

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: , , ,

Autistic – I don’t like that word

March 13, 2013 By 5 Comments

My son was diagnosed 5.5 years ago, when he was three, and I first read another person’s thoughts on this word in their book. I read a good number of books in those first months post-diagnosis. Some of the information left my memory immediately, some I used instantly, and some nuggets stuck with me to this day. When I read what that particular author said about the word “autistic” I thought to myself – “what’s the big deal?  It’s just a word.”

But I get it, and it didn’t take me long to realize why he or she didn’t like the word – because I soon found myself cringing every time I heard someone use it.

My kid is not defined: autistic. He just HAS autism. Just like he also has blond hair. He also has a charming personality. It’s one piece of who he is. He also has loving parents. He has a strong aptitude in math. He has a reading delay. He has eyeglasses. He has a love for video games. He has lots of things. But he IS NOT just one thing and he is not defined simply by any one of those things, good or bad. They all play into who he is. That’s why that word really bugs me. A person has asthma, but rarely walks around calling themselves an asthmatic. A person has Down Syndrome. A person has a disability or ability — they are not simply defined by that disability or ability. Fill anything into that blank you want to.

I hear the word autistic from many sources. I will hear doctors use the word, special education teachers, therapists, friends, pastors, extended family members, grocery store clerks, airline workers, bookstore clerks and so on. Less so, MUCH less so, from parents of children with autism, but I will even at times hear a parent say it.

What makes some people not like the word and some people not care one way or the other? For starters I felt it came down to education and personal experience with the matter. If you lived with a child and loved a child with autism, you may feel differently about how that child is labeled by the term. I have always felt open about our child’s label in regards to our community and our family and friends. (Our child’s awareness and acceptance of his label is another situation and you can see some of my past posts regarding that.) But being open about a label doesn’t necessarily mean I’m open to your using whatever label you see fit. I may find a label you use to be negative. Again, my child IS NOT autism, he HAS autism – one piece of who he is. Most of the time I don’t say anything when someone says autistic in a conversation with me. But I’m thinking to myself, “please don’t use that word.” And if the word comes up in a way that I can tell them my feelings regarding it, I will.

I wouldn’t become intentionally mad at someone who couldn’t know without personal experience how that word hurts me when they use it. But if I have an opportunity to explain myself, I appreciate being able to do so.  But why are some parents not offended by the word?  Have they just never thought of the negative connotation it puts on their child?  Am I more absorbed in it because I like words?  Is it a difference in the functioning level of children?  Or is Autistic the next “R” word we’ll be working to eliminate from our vocabulary and I’m justified in how I feel and think?

I’m interested to know – how do you feel about the word? And tell us in the comment if you’re a parent, support person, family member, etc.

Kara

Filed Under: Asperger, Autism, Diagnosis Tagged With: , ,

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: , , ,

Sometimes I’m Slow

February 2, 2013 By Leave a Comment

Three years ago when my oldest son married and moved out of our home I was embarrassed to realize how little he could do for himself. He couldn’t cook … anything. He couldn’t wash his own clothes. And, we won’t even get into money management. I don’t blame him for those deficits—I hold myself responsible because those are things I should have taught him to do before he left the nest.

At that point I decided that all of our children should learn some basic self-sufficiency. So, they were going to begin getting up to an alarm clock, preparing their own school lunches, washing their own laundry, and we would increase the amount of their allowances to give them enough spending money to pay for their own snacks on the way home from school if they wanted them.

I should also tell you that I am not a morning person, so I don’t do well with getting up and preparing breakfast for the family before school. If there is going to be a family breakfast, it will be prepared by my husband who rises with the roosters (most mornings). But, most mornings it is more of a fend for yourself kind of thing. That is where this story really begins.

Stephen (our almost 16 year old son with AS) sets his alarm and gets up at 5:30 every school morning. The rest of the house is quiet. He does this so that he can take a leisurely shower (and steal all the hot water, even though he would never admit that.) After he showers and dresses he goes to the kitchen to prepare for breakfast. First he decides what to have for breakfast. I think he usually has frozen waffles. But, this morning we were out of frozen waffles and he had to use leftover homemade waffles. He begrudgingly prepared and ate them. But, as a result of the deviation from the routine it was 6:55 and he was just finishing his breakfast. Lunch had not been prepared and he had not yet brushed his teeth. (He can’t figure out what happens to all of the time—almost 1 ½ hours to shower, dress and eat!) He and his father usually leave for school between 7:00 and 7:15.

Normally, I would have stepped in to help save the day. But, after a discussion we had yesterday about how mom always helps him when he is short on time, I decided he had no reason to change his behavior. So, today when he commented that I could help him, I said, “no, I’m not going to.” To which he jokingly replied, “Why, because you don’t love me?” And I answered, “Because I DO love you!”

Sometimes I’m slow to learn, but I do eventually get it! It took 18 years with my first son. But, now, I think I get it.

~ Louise

Filed Under: Asperger, Parenting, Responsibility, Uncategorized Tagged With: , ,

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: , ,
« Older Posts