Seeking and Avoidance

Seeking or Avoidance?

One of the biggest revelations I had as a mother of an autistic child is that there is that in every situation, there is a reason behind what Gabriel does. It may be difficult to pinpoint it at the time, but given diligence, it can be found. When I realized that, I discovered that aberrant, unwanted behavior could be much easier dealt with if I first discovered the why behind it.

The "why" in nearly every case falls into one of two categories: sensory seeking, or sensory avoiding.

To put it in simpler terms, either Gabriel is experiencing something that he finds unpleasant and would very much like to get away from; or else, he finds the sensation enjoyable, as it is fulfilling him in someway, and he is trying to get more of it.

For example, Gabriel kept sticking his head in any source of water that he could find--dog water bowls, kiddie swimming pools, and even toilet bowls were a temptation for him. After a few moments of dripping confusion, our "a-ha!" moment arrived. We keep our family home much cooler to accommodate Gabe's sensitivity to heat; when we were out and about, in houses that idled much warmer than we were accustomed to, he would seek what was (to him) a sensical and rational way to cool himself off.

In another case, Gabe suffered from a common issue amongst his autistic peers--pica, the consumption of non-food items. It confounded me why he would actively seek to eat chalk and cardboard when good, preferred foods were offered. With the help of my then-OT, I came to the conclusion that he was not eating these things out of hunger, but out of a need for a specific sensory input that chalk and cardboard could fulfill, but (say) yogurt or dry cereal could not.


I will warn you: it won't always be clear cut and easy to decode that convoluted reasoning.

Gabriel started leaving the house. He would run out the front door and down the alley before we could get across the room to catch him, running for all he is worth trying to get as far as possible, as quickly as possible before we could catch him. Locked doors were no deterrent when, through observation, he rapidly discovered their trick; physical barriers had to be mighty indeed for him to be unable to push them away with his not inconsiderable strength.

At first, we thought: Obviously, this is avoidance. Something he is experiencing inside the house is bothering him to the point of escape.

In this case, the important factor that we did not consider as a related matter--that we had recently had a trampoline installed in our backyard--was his reasoning; I just didn't connect the two events. He was running out the front door, not the back, so his physically moving away from the desired object threw me off track. In the end, he was not trying to get AWAY from something, but TO something--his toy, his trampoline.

Another time we struggled: for months at a time, every day Gabriel would get into his diaper and smear his feces. All over everything--my house, my walls, his toys, his person. To a neurotypical adult, this was beyond incomprehensible. I would actively go out of my way to avoid such a unsettling substance to be on my hands, face, and surroundings.


It was revolting, embarrassing, disheartening, depressing, and further proof that my son was abnormal. I could scarcely imagine anything being more horrifying than that time, that disturbing habit that he got into (oh, how soon he topped himself of even that).

Now getting rather confident with figuring out these little oddities' causes, my first instinct was to assume that he was seeking some sensation from his action that he was not getting through normal day activities. My mind poured over the different properties of his excrement, trying to single out the one (to him) pleasing attribute.

Of course, I was completely on the wrong trail. This was not seeking behavior; it was avoiding.

One very distinct characteristic of poop is its pungent smell and ready availability, making it an ideal camouflage to mask the apparently untenable smell of my plug-in air fresheners.

That is part of what makes this process so hard. To us, a floral-scented plug in might be cloying at worst, but we would hardly go through the extravagant lengths that Gabriel did to get away. Being too hot is uncomfortable, but not bad enough to illicit a toilet-bowl head wash.

To him, though, it is akin to pain, and he will do anything to make it stop.

If it is seeking, his body is actually telling him that he needs this thing to survive, like hunger pangs when he needs sustenance. From previous experience, he knows that jumping up and down on the trampoline will help calm his raging, rampant body to a state where he can finally relax, a talent we often take for granted. His pica was a physical need in his mouth to experience the sensation of crunchy and chewy--while you or I would reach for carrots or toffee, he sees that cardboard book or sidewalk chalk as what he physically needs to make himself feel all right.

Why bother with all of this?

If you find the reason, you can more easily correct the behavior. Addressing the behavior and not the underlying cause is a stop-gap at best, training you to predict and prevent rather than ending the undesired action of your child.

With the story before of Gabe's fecal-play, Michael and I became masters at making it more difficult for him to achieve his goal. Beneath his clothes, he wore a wrestling singlet, similar in construct and material to a one-piece swimsuit. Upon arrival at our home, he would be changed and promptly dressed in footed pajamas that had the feet removed, worn backwards so he could not simply unzip without considerable contortion.

It helped the problem, for a while, but the moment he was out of our sight or if we got lax with putting on his deterrent gear, he would be back at it, distressing us to the point of desperation.

The behavior cannot be corrected without the reason--punishing and redirecting cannot fulfill that need for avoidance or seeking that caused the action in the first place.

In each of these situations, Gabe's motivation was the insight that allowed us to fix the behavior permanently.

For sticking his head in water when he was too hot, we preemptively asked hosts to turn down the thermostat a couple of degrees or have a fan going in the room Gabriel would spend most time in. Almost every person spoke to was agreeable, but for those that were unable or unwilling to for one reason or another, we made sure Gabe would be there for only short bursts, wore loose, comfortable, cool clothing like swimwear shirts and lightweight shorts, and when he started to get red in the face, we would take him to the car to let the air conditioner blast him.

With the pica, we did much experimentation to figure out what food could give him the sensation of eating something similar to chalk or cardboard. I don't recommend starting out looking at healthy foods--get him to eat something that is actually acceptable for him to eat, and worry about widening his horizons later. He loved the never-ending chew-chew-chew of the cardboard, so fruit- and meat- jerkies became very good stand-ins, as well as Twizzler candies that had been allowed to dry out beyond the point of (typical) human consumption. The chalk had that incredibly satisfying resistance with the initial bite, which a lot of firmly cooked meats and vegetables are able to imitate.

For the escaping trampolinist, a picture hanging where he could request time outside as well as scheduled allotments for jumping allowed him to feel more secure and less desperate for it. The fecal play, which for nearly a year tormented me, was remedied by simply swapping out the hibiscus plug-in for one that smelled like campfire.

Your life shouldn't be lived as a compromise to your child. They are wonderful and they are such such blessings, but they can't be everything--you are training them every day to go out on their own and leave you, live without you. Teaching them that the world will conform to their needs and wants is a disservice to them as well as to yourself. Instilling the ability to identify triggers and self-regulate, however, is a skill that could benefit every child, autistic or not.


So, find out why he does those peculiar little things that irk you so. Help him, guide him toward ways to get what he needs, let him know that even without words, you can hear him, and together, you can make it back to okay.

Okay

He can't grasp a pencil--

How can he grasp the magnitude

Of what he's going through?

That it will be okay.

(Will it be okay?)

How can he understand, 

He's in a world that will always be

Uncomfortable

Unwelcoming

Painful, even.

I may not know why

The caged bird sings,

But without a voice,

Without a song, 

He'll die, never having been heard, 

Understood. 

Born into a life that 

Expects more,

Demands more, 

But sets him behind, 

A handicap from birth

That he must struggle against 

Until the day it's done. 

He may never catch up,

Little less excel. 

Forget savant--

I'll take potty trained.

Not great, not best--

Just okay. 

I don't need a linguist, 

Words that craft and create and move--

Just give me "I love you",

Or "yes", "no".

...."mom".

Twenty years plus I have on him,

To figure it out, 

Navigate,

Make sense of the senseless.

But this...oh, this....

This is the hardest,

Because it makes no sense.

Forget cause--

As helpful as that would be--

And forget cure as well.

I have reasonable requests,

I think.

Make it okay. 

Make it so that he doesn't suffer,

Every minute,

Trying to survive in a world,

A society,

That was made for everyone but him.

You can't fix him--

He's not broken.

HE IS NOT BROKEN,

Nor will I be.

Just...

Meet him halfway.

Let it be okay. 

(Copyright: Andra Wearden, July 25, 2014)

Nothing but Silence

Nothing but Silence

I am lonely--

Would you like to play?

It looks like you're having fun.

Your red ball goes

(Bounce, bounce, bounce). 

I can't take my eyes off 

(Bounce, bounce, bounce)

Your bouncy red ball--

Can I play, too?

I open my mouth to ask, but--

Nothing comes out.

Just silence.

No words come out, 

I'm so angry now!

I yell and I bite, I 

Scratch and I pinch and I scream, 

Because I want to play, too--

Why can't I play, too?

My parents are shushing me,

Drag me away,

Away from the bouncy red ball,

Away from the park--

I'm not ready to go. 

I open my mouth--

As much noise as I make,

Mine doesn't sound like yours.

No! 

I'm not ready to go!

I want to play, too, 

With the bouncy red ball, 

On the swings that go

(Whoosh, whoosh, whoosh)

Back and forth, and feel so good!

I open my mouth--

But nothing comes out. 

Just silence. 

On the way home,

I'm crying now. 

I fought before, but

Now it's too late;

I've given up.

Tears stream down my face,

It feels bad to be wet,

But I'm sad. 

I open my mouth, 

Then close it again. No use. 

Nothing would come out--

Just silence. 

(Copyright, Andra R Wearden, July 01, 2014)

Inventory of an Infant

Inventory of an Infant

Brown eyes,

Upturned nose,

Clear skin,

Long toes--

Mommy.

Dark hair, 

Full lips,

Big ears,

Narrow hips--

Daddy.

Stubby legs--Mommy.

Strong hands--Daddy.

Streak of temper--Mommy.

Smile--Daddy.

Appetite--Mommy.

Attitude--Daddy.

Pickiness--Mommy.

Personality--Daddy.

Three years old.

Monotone,

Wandering eyes, 

Flapping hands,

Loud cries--

Autism.

Tippy toes,

Biting, hitting,

Always Laughing,

Never sitting--

Autism.

Won't sleep,

Can't talk,

Only screams,

Funny walk--

Autism.

Twirling,

Whirling, 

Dancing,

Prancing, 

Flapping,

Clapping, 

Biting,

Fighting,

Roaring,

Warring,

Eating, 

Eating,

Eating

Eating....

Autism.

Brown eyes,

Happy boy,

Sweet smile, 

Mama's joy--

Gaby.

My baby.

On Moving to Abilene

My dedication to writing a blog seems to be directly related to my computer access. In the years since Michael and I have been together, I have been through more laptops than most people will  go through in their lifetimes; my spiritual aura is in conflict with technology energies. (At least that's what I tell myself, instead that I am woefully and inexcusably forgetful and clumsy.)

So very much has happened in the time between this post and its predecessor, but hopefully this will bridge my way into writing regularly again.

The biggest change of course would be our relocation.

Lubbock was where Michael and I met and fell in love, started our family. We made friends, established connections, became involved with a church family. Michael's family (the Roberts portion of it) was centrally located there. Both he and I were cautious, hesitant to uproot ourselves and our children. The longer we stayed, the more we embedded ourselves, finding more and more reasons to settle in for long term.

When growing up, Michael moved around a lot because of parents' jobs; I, contrarily, moved exactly once in memory. My family and I moved into the house next door. My hometown was close knit, small, with a strong sense of community. I loved the predictability, the consistency. The peers that I started Kindergarten with at five years old were the friends that I graduated High School alongside. It was comforting, and I wanted that life for my children.

Our financial status could hardly be considered strong--every year, through God's blessings, we have been doing progressively better. It has been slow going though. We will not soon forget those times of too little, of struggle, early in our marriage and parenthood where there never seemed to be quite enough to go around. That above all else was what held us in place: we had finally gotten our heads above water, and it was with sheer dread and loathing that we contemplated tossing ourselves back into the deep end to re-establish ourselves elsewhere.

Things in Lubbock for us began unravelling though, little by little.

Michael's job took care of us for many years, but it was barely enough to support a family like ours and was not somewhere we could see Michael working at for the long run. Fifty years from now, we couldn't see him still selling cars, and every year invested more into a career and field unsuited for him was nonsensical.

Gabriel was not making progress in the best PPCD program in town, despite being enrolled for two years. He was at the cusp of being moved into the special education kindergarten, and it was time to try something different.

And I? I was struggling, floundering, depressed and overwhelmed with the reality of raising a diabetic daughter, a severely autistic son, and a toddler. There were friends and support groups, Michael's family, and a frankly incredible church (all of which I will be eternally grateful to for helping us make it this far), but I needed my family.

I needed my sister, who adores my children and makes me laugh, makes me happy, makes me remember who I am and who I was and who I will be; a perfect friend who I couldn't love more and who loves me the same. She understands Emerald because she was Emerald, and she loves my boys just the way they are.

I needed my brother, who is patient and compassionate and amazing--we all joke that he is Mom's favorite, and if he is, not one of us can blame him for it because he is our favorite, too. He reaches Gabriel in a way that few else can; challenges me spiritually and intellectually in way that has made me strong and all but unshakable; and celebrates who every member of my family is as an individual without seeking or wanting to change us.

But most of all, I needed my Mom. I wonder if we ever really get over that--when things are hard and scary and tough, when things are falling apart (which is how my every day feels), your mom is where you can go to fall apart. And, when you're ready, she's the one that can help you put yourself back together.

My Mom is unique though in that she genuinely gets it. She understands what I am going through, doesn't tell me how I could be doing it better or shrugs it off like it doesn't matter. She listens, she makes it better. Sure, she makes fun of me for being whiny and needy, but...she knows that I am so busy taking care of everyone else and everything else, that I need someone to take care of me, too. To bring an extra can of tuna and boiled eggs so I don't have to eat tuna salad like everyone else and make my oatmeal raisin cookies with extra cinnamon. To rub my head when I have stressed myself into a migraine; talk to me about things that matter when I'm ready, and things that don't when I'm not. People say "she has seen me at my worst", but no one sees you more vulnerable than your mother, and she still seems to like me.

Moving to Abilene, we got more than those three: we got my beautiful, caring sister-in-law Julia; my intelligent and funny brother-in-law Jud; and of course, my Daddy, my everyday proof of God's love and miracles. My nephews Grayson and Andrew live here, and they are just as cute as you could ever want. There is a noticeable void where my brother Royce is supposed to be, working as he is in the oil fields in West Texas. Amber, Jarrod, Mom, and I are kind of a set though--a group of kindred spirits brought through the fire together. Our life circumstances have bonded us in a way that makes us inseparable, very good friends as well as family.

It also helps that we are massive nerds on wheels that bond over Doctor Who and jokes about science.

Like I said earlier, many little things conspired to bring us to our new home in Abilene. The final nail in coffin though was Emerald's inability to return to Lubbock Christian.

LCS had been so wonderful to us, and we will be thankful to them for the years they have given us. But being a private school meant that they were not able to have a nurse on campus, and with Emerald having Type I diabetes that necessitates glucose tests and insulin shots, she needs to be at a school that has a trained, registered nurse taking care of her. The only other option is taking her out and homeschooling her, which is an impossibility with our conflicting personalities and shared impatience.

At the end of the school year in May, we began to look for a new life in Abilene. ...but that is enough for tonight. More tomorrow of our adventures in moving.

Goodnight!!

--Andie