Posts Tagged "adaptation"

Running Man

Posted by on Jan 8, 2014 | 0 comments

Running Man

When you think of autism, what’s the first image that pops into your mind?

(It’s ok, we’re not pc here.)

I’m guessing it’s something along the lines of a child flapping their hands wildly. Or spinning in circles. Or making strange, loud sounds.

In the autism community, we call these “stims.” When somebody is “stimming,” they’re seeking sensory input, or stimulation. Stimming comes in all kinds of forms, often as individual as the person doing it.

Jack likes to run. In the house, in a pattern.

We call it “doing laps.”

When Jack is running laps, he’s in his own world. He has a set pattern, which usually starts at the couch in the living room, takes him through the room into the kitchen, off the fridge (it used to be the sliding glass door, until we finally convinced him that it might hurt to accidentally go through it), down the hall into the front door, and back into the living room, landing with a bounce on the couch.

With barely a breath in between, he’s off again.

He does this for a while, and he’s pretty much in his head the entire time. Meaning, he’s not available for conversation. Or much else, really.

He’s off in autism land.

autism is amazing

I finally asked Jack what he’s thinking when he’s running his laps, as I was a bit concerned that he might be doing it out of frustration or anxiety.

“When I run like that, I’m thinking happy thoughts,” he said. “Right now, I’m thinking about Rugrats.”

Ok, then. I pressed him to explain further.

“Sometimes I think happy thoughts, sometimes. I’m walking around, which could give me energy.”

Makes complete sense.

I asked him if he’s upset, or if he just does it.

“I just decide to think happy thoughts.”

I had a feeling that as much as I was gaining a little bit of insight into Jack’s habit, I was starting to annoy him. Still, I pressed on. What makes him happy? What comes to him while he’s doing laps?

“Can I keep that a secret? I don’t want to tell you that.”

Of course. A man needs his secrets. He’ll tell me in his own time.

“Maybe I shouldn’t have said that. Cause I didn’t want that conversation.”

Or not.

 

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The Dinosaur Gods

Posted by on Jun 15, 2013 | 1 comment

The Dinosaur Gods

My husband and I were both raised in religion, his was Judaism, mine was Presbeterianism (is that an ism?). I was baptized, he had his Bar Mitzvah. He even went to a Catholic high school, and took an educational trip to Israel. He is decidedly more well-versed in religion than I am.

Yet we have both come to the same decision: as far as our “formal” beliefs as adults go, the jury is still out. Agnosticism, atheism, there’s not quite an -ism for us. Not-sure-what-to-label-us-ism.

Either way, there is one thing that’s clear. We have never really discussed the concept of “God” with our children.

We have talked about death. Death and dying and the afterlife and all of the details therein ad nauseum. The boys are very aware that their Grandma Judi (my mother) passed before they were born, and for several years now they’ve been asking the whole gamut of questions.

Death is always a tricky one with children, but as usual, autism brings it to a whole new level. Jack’s phase of asking people about my mother’s death directly seems to have ceased for the time being. My father will be happy to hear that one.

Jack understands that my parents divorced before my mother died, and he gets where his Grandma S (my step-mother) fits into the picture. That didn’t stop him from looking my father directly in the eye and asking “is your wife dead?”

Yeah, that was an awkward moment. I had prepared my step-mom for the potential questions, since it had been a hot topic for Jack that month, but I had forgotten to inform my dad.

Sorry, Dad. He gets it now. I think.

So even though we have gone through the science and semantics of life, the universe and everything, we have not yet discussed the Big Guy in The Sky. Not for any specific reason, we just haven’t.

Until this week.

For some reason, Jack was discussing baptism with his special needs assistant (SEA) at school. She told him that baptism is, basically, where babies get a little water put on their head, and it’s something people do to show their devotion to God.

Yes, he wanted to know all about why you would possibly want to put water on a baby, but that wasn’t the first thing he asked. No, he had another query, one his SEA was wholly unprepared for.

“What’s God?”

I would like to formally apologize to Jack’s SEA. I remember the first time he asked about death, and the cold chill that went up my spine. My husband wasn’t home, and I was put right on the spot. What’s the right answer? *Is* there a right answer?

After taking a moment to consult her French dictionary, the SEA rallied.

“God is a supreme being that some people believe in, and they go to church to show their belief.”

Jack thought about that for a while. He’s been obsessed with space and all things science, so she expected a whole host of pointed questions.

He had only one.

“I went to dinosaur camp in a church. Do those people believe in dinosaurs?”

Yes, yes they do.

That’s my story and I’m sticking to it.

dinosaur gods

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At The Heart of Darkness

Posted by on Apr 17, 2013 | 3 comments

At The Heart of Darkness

I am a generally happy person. I try to find the humour and joy in everything, even when it would appear that there is none to be had.

It’s been difficult to find my smile lately.

I should elaborate. I have many reasons to smile daily, all day long. I have four amazing children, my beautiful, beautiful boys, whose every breath is reason to be joyous. I smile, but there is something lurking behind it. Something dark and sad, something I’m trying my best to understand.

I am anxious. I am depressed.

I have suffered from Post-Partum Depression (PPD) after each of my children’s births, in increasing severity. My youngest son was born in October and this time it came over me like a tidal wave, the worst yet. Many people and medications support me, but the dark cloud persists. I feel like I’m going through the motions, watching my happy life from the outside.

I’m trying to put my finger on it. Baby blues? Could still be, my child is only six months old. Four children seven years and younger? Of course. There is stress in wrangling them here and there, getting them into bed, entertaining them, feeding them. They eat a lot. Seriously, a lot. But all of those things are part and parcel with motherhood. All of those things are expected. If I didn’t think I could handle this job, I wouldn’t have applied, and kept applying. My entire life brought me to this point, and I wouldn’t change a thing.

(Ok, in a perfect world there are things in my past I would have done a whole lot different, but we don’t get do-overs. It’s easier to accept that the decisions I’ve made in life, for good or bad, have created my life today. And I kind of love my life today.)

Autism? Autism is a huge part of our lives. It’s pervasive, and up to now, we’ve made it work. I realize, however, that things are changing. It’s getting more difficult. Jack is getting older. He’s getting stronger and smarter. A lot smarter. And he’s busting through all of the tools I’ve used to help him – and myself – cope. So we’re at a plateau of sorts. Or maybe diverging paths. Jack is heading into his future, and I am scrambling, trying to keep up with him. Trying to get us back in sync.

I’m flailing.

Another entity has also invited itself into our family, or is trying to. ADHD*. We are having one of our sons assessed, and I’ll be surprised if that’s not the outcome. It’ll be a few more months and a few more doctor’s appointments and a few more assessments until we know for certain, but I want to know for certain. I don’t like ambiguity, especially in my home, with my children. I am staring down the barrel of this the same way I did with autism. If my child has a challenge, I want to know what it is so we can get going. Get a handle on it. Get ahead of it. Early intervention is the best solution in any situation involving a child. Involving anyone, honestly.

If that were the only issue, I would be fine. But no, ADHD didn’t want to stop there. In the process of understanding what’s happening with my son, I started realizing something about myself. The doctor we saw last week asked me something that threw me for a loop. After going over our family’s medical history, she asked a simple question. One I hadn’t ever heard put in quite this manner.

“Does his behaviour resemble anyone in your family?”

I looked at her, stunned. The sky opened up, the clouds parted, a window of clarity descended upon me.

Or maybe I blinked.

Yes, in fact, it did resemble someone in my family.

Me.

Insert montage of snapshots of my life: my elementary school report cards describing in detail how I couldn’t sit still, talked too much, couldn’t focus; a trip to the doctor as a small child, with the word “hyperkinesis” ringing in my mind; family members telling me I talked too much, sit still, calm down. I was obsessed with candy (the bad kind, not the kind I give my kids now). I stole money from my mother’s wallet and my father’s bureau. I couldn’t handle not getting what I wanted, and screamed and banged my head when I couldn’t deal. Punishments didn’t mean a lot to me, as I was somehow always able to adapt. I lived in constant anxiety about one thing or another. My main recollection of myself as a child? Obnoxious.

That is how I always thought of myself, until one day in high school I looked in the mirror and decided I wasn’t going to be that person anymore. I embarked on a long journey of figuring it all out. Teaching myself how to take turns in conversations and not only talk about me and mine. Working to tune out the sensory overloads that hurt my head. Putting myself into social situations and act accordingly, even though I was deathly afraid. Trying, desperately, to become a “me” I could look in the mirror and love.

That’s a lot to carry around.

I pulled out those report cards not too long ago, and read them all in detail. And I cried. I cried for the little girl who never really understood why she was in trouble. Who didn’t know why she did the things she did, but couldn’t stop herself from doing them again. Who desperately wanted to fit in somewhere, anywhere, but just… couldn’t.

And I cried for my children. Because I don’t want them to ever feel what I felt. I want to shelter them from the awkwardness, the self-consciousness, the underlying feeling that they don’t belong.

I want my sons to know what is within them that makes them do things differently sometimes, and to understand not only how to manage and cope, but to know and believe that they are perfect exactly the way they were born.**

I’m not under the illusion that I can save my children every heartbreak, every hurt. Part of growing up is experiencing the things that will make them into strong men, whole men. Heartbreak and hurt are a part of the deal as much as love and fulfillment. Yin and yang.

at the beach

If I can do anything to keep my children from feeling the confusion I had, I will. If I can tell them every single day that they are beautiful and confident and awesome just the way they are, they might believe it. I can try. I have to try.

In the moment when the doctor asked that simple question, I realized that my child is very much like me. He’s the only one of our four boys who really looks like me (the other three are clones of my husband), and now I know he shares more than my features.

The most important thing I took out of that meeting was the very real possibility that if my son has ADHD, I most likely have it, too. It’s genetic, so it’s entirely possible. The most damning evidence, though, is that word I remember so vividly from long ago. Hyperkinesis. I’ve known it all of my life, but never really understood what it meant for me. I know now that hyperkinesis is what they called ADHD before it was ADHD.

I know that after my mother took me to the doctor and we learned that word, she put me on the Feingold Diet and cut out all artificial colours and flavours. I don’t remember anything else, though. No medications, no more doctor’s visits. No more addressing the elephant in the room.

Me.

Sadly, my mother has passed away, so I can’t ask her all the questions that are running around in my brain. My father has told me as much as he recalls, but there’s more. I’ve been questioning myself since Jack was diagnosed almost five years ago, and now it all seems to be making sense.

I want to know more. What can I do to get more focus? Would medication help? Is the medication I’m on making it worse? I want to banish the ambiguity.

So, I think I’ve discovered the source of the darkness: I am overwhelmed. I have several very large balls in the air, and I’m afraid if I drop them, I’ll fail my family. Autism. ADHD in my child. ADHD in myself. The anxiety. The unknown.

I am strong, I have been through worse. I just want answers, and I want clarity.

I want to help my son navigate his life with autism.

I want to help my other son cope with whatever is challenging him.

I want to get ahold of myself so I can live my life free of this weight that’s pressing me down.

I want to smile.

my heart

*****************************************************************

*There are some who may hear ADHD and think, “Oh, that’s not so bad, it’s not as bad as autism.” No, it isn’t, it’s different. It’s still a challenge, both to the individual who has it and the family that supports them. It’s work, on top of lots of other work. Not impossible, but difficult nontheless.

**I feel it’s important to note that I do not blame my parents in any way for the way I felt, or the way they handled me. This was forty years ago, and an entirely different world. If anything, my experiences have informed me well to guide my own children.

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So Much in The Silence

Posted by on Sep 19, 2012 | 0 comments

So Much in The Silence

I was recently reminded that there was a time that my child could not speak.  He could not answer a question, he could not share something that excited him, he could not tell me where it hurt.

That hurt.  A lot.

To know your child is in distress and to not know why, or how to fix it, is the pinnacle of parental frustration and anxiety.

I recall looking at him, two years old, standing in his crib to greet me in the morning, wondering when he’d say “hi, mama!”  Thinking that one day maybe he’d just start speaking in full sentences, having had no need for baby talk.  Not ever, not once, realizing something bigger than a speech delay might be at play in our home.

Any day now.

There is a photo I have of Jack that absolutely breaks my heart every time I see it now.  Now that I “know”.  He was eighteen months old, and not feeling well.  I was taking photos of his pout, because I do things like that.  I have photos of all of my children in various states of anger, sadness, happiness and joy, because I don’t ever want to forget even a second of their lives.

I also want a nice, big arsenal for the teenage years.

The photo is gorgeous.  He was a beautiful child (still is), with rosy cheeks and big, curly blonde hair.

What I didn’t know, is that not only did he not feel well, he actually had strep.  At one o’clock that same evening/morning, David had to rush him to the hospital because his 104-degree fever would not come down, no matter what we tried.

What I didn’t know, is that his throat hurt.  He was in pain, and had been, apparently, for days.  He had been sleeping a lot, but not complaining in any way.

He couldn’t, actually.  He didn’t know how.

That event marked a turning point in our lives, where we went from “Jack is just independent and will speak when he’s ready” to “maybe we should be looking into this a little bit more”.

We spoke with his pediatrician about it at our follow-up visit, and were shushed and placated, and pushed out the door with the advice to not to fret about it.  Lots of kids don’t have language until later.  Start worrying when he’s two and a half.  Almost a year away.

A family member had been through Early Intervention with their child, and suggested we give them a call.  What could it hurt?  It’s free, and maybe they could help.  We went back and forth about whether or not to do it, and finally decided to make the call.  Jack was twenty months.

He was assessed by the full team of not only a speech therapist, but a social worker and occupational therapist within two months, and we were assigned benefits for him within four.  We were overwhelmed with what they had offered: five days a week in a collaborative preschool, home-based speech therapy two hours a week, clinic-based occupational therapy two hours a week, and various other interventions we decided not to pursue.

As I’ve mentioned before, speech therapy “unlocked” him.  Jack was speaking within a month of his therapy, and within a year, he was well on his way to being the chatterbox he is today.

But why the other offerings? Why so much for a little boy who simply had trouble speaking?

As the months went by and the reports started coming in, it all started to make sense.

Actually, that’s not true.  They confused us.  Why would a speech delay cause upper body weakness?  Why were both his fine and gross motor functions being called into question?  Why did there suddenly seem to be so much more to be concerned about, just as he was finding his voice?

Well, we know now.  That story has been told.

Sometimes, though, I need to be reminded of those days.  Sometimes when I’m dying for quiet and my house is just so loud.  Sometimes when Jack is asking endless questions about nebulae and how stars are born and just how big is Jupiter in relation to Betelgeuse anyway, when all I want is to shut off his light so I can go watch TV.

Sometimes, I need to remember that when Jack speaks too much, it’s not a lot different than when he didn’t speak at all.

He is now able to tell me when his throat hurts, or he’s bleeding or he needs some alone time. He can tell me when he’s happy and had a wonderful day and can’t wait for our weekend plans. He can tell me he loves me, which I longed to hear for so, so long.

He cannot, though, tell me that he’s stressed. He cannot tell me when he’s had enough.  He cannot tell me when the lights and sounds and noises and cacophony of the world have pushed him to his very limits.  For those times, it’s still up to me to read his body language.  To try and snap him out of the vacant looks and nonstop pacing. To bring him back.

To heal the little boy with blonde curls and rosy cheeks.

Jack never stops teaching me, even though I sometimes get caught up in the noise myself.  He speaks now, but it’s so important to remember when he could not.  He is still the same child, and he still needs me to guide him.

And, for now, to explain the finer points of the universe.

 

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Sink or Swim

Posted by on Jun 11, 2012 | 1 comment

Sink or Swim

Jack is interested in all kinds of things.  He loves volcanoes, space, planting things in his garden, and airplanes.  He flings himself full-force into his passions du jour, and wants to know everything there is to know about them.

Now Jack has decided he doesn’t just love airplanes, he wants to fly them. “I want to earn a badge for flying an airplane when I grow up,” he told me recently.  “Badges are my favorite.  They don’t give you badges for flying rocket ships.”

This I did not know.

So, we chat about what kind of planes he wants to fly and where he wants to go.  He has it all figured out.  “I want to fly people to another airport through the clouds.”

So, an airline pilot?  Sounds good.  I start to explain about flight school, and how he’ll need to go there when he’s older.  He stopped me mid sentence: “I just need to figure out which button to push to make the airplane fly.”

That’s when it dawns on me, this is just like swimming.

Jack can’t swim.  At least, he’s never had formal lessons (he will, I promise).  The last time we were at the pool, though, Jack didn’t want our help with anything.  You see, Jack believes he has taught himself how to swim.

This is most inconvenient when faced with an open body of water.  And, you know, the fact that Jack can not, in fact, swim.

The swimmer touches the ocean for the first time.

He would not accept the notion that he didn’t know how to swim.  He explained to us that he simply needed to move his arms like so, and his legs like so, and although he didn’t actually want to put his face in the water like the other people, that would be fine.  See, he’s swimming! (Cue the child almost sinking to the bottom of the pool.)

Jack has now applied his theory of self-education to flight, and is equally stubborn about its certain success.

Jack's flight school. Don't worry, he's got this.

I would recommend you check the credentials of your flight crew the next time you embark on air travel.  Just in case.

 

 

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