Posts Tagged "independence"

Guess What? I Have Autism!

Posted by wendy on Aug 5, 2013 | 2 comments

“Hi! I’m Jack. I have autism.”

A sentence I wasn’t sure I was ready to hear. Yet, so pleased to see it exclaimed loudly and proudly.

Two weeks ago my husband David and I told Jack he has autism for the very first time. We’ve never hidden anything from him, we just wanted to wait until we were certain he’d be able to understand the gravity of it all to address it directly.

We discussed it for months in advance, tried to plan out what we wanted to say. And what we didn’t want to say. We decided to wait until the summer, so he would have time to adjust to his new reality unfettered by school stresses. We looked at books, we asked what others had told their children.

Summer came and we still waited. For the right time, the right place, the right… whatever.  We finally decided to take him out to lunch alone, where we could have a conversation without his brothers drawing focus. It would be perfect.

And we all know the best laid plans always go according to, well, plan.

The days passed and still no discussion, no lunch date. Then one day we were all sitting around the kitchen table doing arts and crafts and what-have-you. I looked at David, he looked at me and shrugged. It just seemed like a good time.

“Jack, do you know what autism is?”

He wasn’t sure, so we expanded on some things he already knew: people have different likes and dislikes, people don’t all look the same, people think differently.

That’s been a recurring theme in our family for years. Whenever one of the children asks why someone is a certain way, or why somebody likes something they don’t, or any time something is not the same as what they know, we say it.

“People’s lives are different.”

We knew someday Jack (or his brothers) would realize that he’s not like most of the other kids, and we wanted him to know that different is not wrong. It’s not strange. It’s not weird or funny or less than. Different is just different.

We described the spectrum, and how all people who have autism fit somewhere on it, but are not the same. That even within the autism community there are differences, and that’s OK.

We told him that autism is why sometimes sounds are too loud and lights are too bright and the Titan AE theme song drives him nuts (although to be fair, it’s really annoying). Autism is why he has a helper at school, and why he needs to run around in the halls periodically. It’s why he takes melatonin to sleep at night.

It’s also why he wants to know everything about every subject that interests him, and wants to share it all with anyone within earshot. It’s not why he’s curious, but it’s probably why he’s curiouser.

So when we said the words “you have autism” to Jack, and explained what we meant, he wasn’t upset. He wasn’t scared or troubled in any way. He was quite the opposite.

I’m pretty certain Jack believes he has some sort of super powers.

Which, of course, he does. Duh.

So, without further ado, Jack’s thoughts on autism.

On the concept of a spectrum, and where he falls on it (we told him he started in the middle, and now he’s toward the high-functioning end):

“It’s hard to read if you’re in the middle of the spectrum. You just have to show your parents the words.”

“If you’re way past schedule on learning, nothing will stop you from learning again and again and again to get to the other end of the spectrum.”

Jack does understand that not everyone can move from one end to the other, although his main concern about those individuals is that they may not be able to have sex properly to have children. He’s quite interested in the mechanics of having babies at the moment.

I’m certain he’ll have more to say on the non-sex aspect at a later date.

On the fact that he was born prematurely, and how that may have contributed to his autism (his correlation, not ours):

“If you’re early (premature) you have a lot more time to learn. If you’re past schedule (post-dates, like his brothers), you don’t have as much time to learn.”

So, according to Jack, he’s got one up on his brothers because he was born six weeks premature.

On early intervention (he started services when he was 23 months old), and the important role parents have in the therapy process:

“You (parents) helped me learn. You also brought someone else over to help teach me to learn.”

“It’s all because of my parents that other people came and taught me. So parents do help out with learning, not just school and other classes. Mostly parents. But mostly school.”

Um, thanks?

“And you learn mostly everything at university.”

OK then.

Some random thoughts on autism:

“I couldn’t walk when I was born, and it’s because of the spectrum.”

Hm, probably not the case.

“I know how to read, so I’m really good at autism.”

I guess so?

We finished up by asking him how he felt now that he knows about autism. Turns out, he thinks it’s pretty cool.

“I think that having autism is great. Of course, what do you know?”

Not much, apparently.

“Do you like autism a lot?”

Yes, yes I do, in fact.

“Well, thank you!”

You’re quite welcome, little man, it’s been my pleasure.

When his aunt and cousins came over later in the day, he ran up to them and gleefully exclaimed, “guess what?!? I have autism!”

Let the celebrations begin.

And, as is his wont, Jack summed up autism in the most eloquent way possible. From the mouths of babes and all, words of wisdom:

“I think it (autism) helps me want to do lots of things. It’s great for the mind, because it can help you do lots of things.”

And finally:

“Some people (with autism) can’t talk – it’s not about your voice, it’s about your mind.”

I couldn’t have said it better myself.

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

Next up in this series – what Jack’s brothers have to say about autism.

Dear Jack… You Have Autism.

Posted by wendy on Jul 15, 2013 | 7 comments

Dear Jack,

There is something your Daddy and I have wanted to tell you for a long time. Something that we weren’t sure how to bring up, or when. Something that has the potential to change the way you live your life.

Jack, you have autism.

You are my firstborn son, my love, my everything. I have adored you since long before I knew you. I waited to meet you my entire life, and when I met your Daddy, he was just as excited. We knew from the very first time we saw you on the ultrasound monitor that your name would be Jack. We didn’t even think twice, we just knew immediately, right there and then. Jack.

You know that you came into this world a bit early, earlier than your brothers. I spent a long time in the hospital waiting for you, waiting for the day it would be ok for you to come earthside. You were early, but very healthy. Daddy and I held you and couldn’t believe how beautiful you were. You are. Perfect little nose, perfect blonde hair, perfect little fingers and toes.

Perfect.

You came home and made us a family. You are the first, the oldest. Your three younger brothers love you, learn from you, and adore you.

We have known you have autism since you were three years old. Actually, that’s when the doctors told us officially. We’ve known you were special since before you turned two. You couldn’t speak, but you knew things. You were incredibly smart. I have no doubt you understood everything.

Knowing you have autism didn’t really change a lot for us. If anything, it made everything easier. You were able to get the support you needed, and some amazing people came into our lives because of it. Miss Amanda helped you learn how to talk and play. Aki and Jane helped you learn how to climb and swing and do small puzzles. Miss Amelia, Miss Deborah, Miss Shelby and Miss Jesse gently guided you into school, with lots of love and joy for learning. And Miss Shirin, who made sure that someone was always at your side (Eric, Charlie, Geoff, and Christine), teaching you how to cope when things get to be too much, how to focus your attention when necessary, how to be safe, and how to explore and enjoy the world around you with freedom.

They all gave you what every child wants and needs. Freedom.

When we moved to Canada, you started “real” school. Kindergarten. Grade One. Grade Two. This fall you’ll be going into Grade Three, which I can barely believe. Not only are you thriving educationally, you’re speaking French while you do it. Even more amazing people have guided you to this point: Mme Riel, Mme MacIntyre, Mme Dowes, and Mme Okeyere have taught you as they taught every other child in their classes, and gave you every respect and inspiration you deserve. Mr. Yaniv and Mr. Perk have guided you from behind the scenes, putting you on the right path and making certain everyone charged with your care is trained properly and know how to support you in the best way possible. And Mme W in Kindergarten, and Mme S ever since, have been by your side every single day.

Because of this team of professionals, this group of people who both want you to succeed and love you dearly, you are the boy who stands before me today. Jacktor The Tractor. JackJack. Jack.

A child who once could not speak at all, who now can not only speak English on a high school level, but can speak French as well.

A child who had such low upper body tone as a toddler that he could barely climb a play structure, who has now mastered not only the monkey bars, but also taught himself how to ride a bicycle (without training wheels).

A child who had no concept of how to play with his toys or colour or use his imagination, yet has now filled my home with extensive drawings of whatever the popular subject is this week, expansive and intricate art projects he’s built, and fantastic books he’s written about wild adventures and alternate universes.

Autism is not a bad thing, it’s just a thing.

Autism is why you only had four words when most other kids your age were chatting away. Autism is the reason you don’t like fireworks, or big crowds of people. Autism is why you get to walk around in the halls at school when being in class just gets to be too much.

It’s why you run through the house in loops, and don’t always listen when someone is talking to you. It’s why I ask you to look into my eyes, so I know for sure that you’re hearing me. It’s why the loud things and the buzzing things and the light things and the random things make you stressed a lot more than other people.

Autism is why you always went to special gyms and preschools and your brothers didn’t. It’s why we went into Vancouver so many times to see the doctors at the place with all of the toys, even though you weren’t sure exactly why we were there.

But Jack, there is something incredibly important for you to understand about all of this. Autism is the reason for a lot of stress in your life, but it is also responsible for you being “you.”

Autism is the reason you could write your name and build intricate structures at a very young age. Autism is the reason you were able to learn how to read in English, how to ride a bike, how to tie your own shoes, and any number of other tasks you took it upon yourself to learn. To teach yourself.

Autism is why you see things a little bit differently than your brothers. And your friends. And most people, for that matter. People look at things and see them for what they are on the surface, you want to know what’s inside. You yearn to dissect and examine everything that interests you, and a whole lot of things interest you.

It’s the reason your younger brothers can read, write, do math, name all of the planets and discuss weather anomalies and scientific principles far beyond their years. Because you have taught them. Because you are curious and thirst for knowledge, and want to share it.

Because you have autism.

And that’s why we’ve waited. We don’t want you to change anything. Not the way you live, the way you think, the way you see the world. Nothing has changed for us, and nothing should change for you.

I know now you will want to know every single thing there is to know about autism, because that’s what you do. In your investigations, you are bound to read some not-so-positive things about autism, about the autism spectrum. There are people out there who believe that autism comes from lots of different sources, that believe people with autism need to be “cured,” that want to eradicate autism completely.

You will make up your own mind about all of these things as you grow and experience life as a person with autism. Our job as your parents is to love and support you on your journey to adulthood, just like your brothers. We have given, and will continue to give you, every advantage we can to make it as stress-free as possible.

Sometimes, though, the stress with break through. You may get frustrated with other people, difficult situations, and even yourself. But I need you to understand the most important thing of all.

You are special. You are Jack. You are not autism.

Autism is not who you are, or what you are. Autism is just another part of you, like your thick, curly hair, your long legs, and your blue eyes. Autism did not determine your personality, and it cannot determine your limits. Only you can decide those things. You have the power to be whomever you want in this world, and whatever kind of person you’d like to be.

My wish for you is that you remain loving and curious. That you have the tools you need to cope when things get difficult, and not let the difficulties stop you. Please don’t ever stop learning.

Jack, I want you to show the world that you don’t live in spite of autism, or because of it. You are amazing because you are Jack.

With all of the love in the world,

Mama

The Missing Pieces

Posted by wendy on May 20, 2013 | 0 comments

There are missing pieces in the autism community today. Beautiful, tragic pieces named Mikaela, Owen and Drew.

So much has been said and written about Mikaela, yet there is so much more that needs to be said. To be screamed. To be cried out into the night.

Our babies are not safe.

We do what we can. We install extra locks, we put up barricades, we install alarms. We put up signs and rub temporary tattoos on little arms and put ID tags on shoes. We tell everyone entrusted with their care to be aware, be cautious, be vigilant.

But we know, at the end of the day, that our children cannot be locked away in a safe room forever. They cannot be grasped by the wrist or strapped into their seats at all times.

Our children, like all children, need to experience the world first-hand. They can’t do that from behind bars.

To do this, we have to trust in so many things. We have to trust that the people watching them will not look away. We have to trust that the child remembers – even a tiny bit – about safety. We have to trust in the unknown.

We also have to give ourselves a break. Parenting and giving care to an autistic individual can be exhausting and exhilarating. It can eat away at you in the same moment it’s filling you with the most joy. It can raise you up, and beat you down.

And sometimes things happen.

Mikaela Lynch’s family will never forget the moment she disappeared. Nobody made a mistake, nobody dropped the ball. Mikaela simply found a weak spot in her web of safety and took her chance to run free.

Like children will, she headed for water. Like many autistic children, she simply didn’t understand the dangers. The danger of a nine-year-old girl out in the world, unclothed, on her own. The danger of water when you cannot swim.

Children will always find a way around the borders and fences we construct for them. It’s our job to provide guidance and limits, it’s theirs to bust through them. It’s a part of learning and growing. So what happens when that curious child never grows out of the desire to run? What do we do when the guidance and limits fail? Because sometimes, they will fail. We are only human.

Abducted children get an Amber Alert, a barrage of information that disseminates quickly via television, radio, emails, texts, lottery tickets, Twitter, Facebook, SigAlert signs over highways, and more. There is no time to lose when a child is abducted, so the system acts as quickly as possible.

While I understand that sending out too many Amber Alerts has the potential to desensitize the public, there needs to be an equivalent alert for autistic children. Wandering, running, bolting autistic children are at risk every bit as much as if they were abducted. There are just too many variables when it comes to a child who may not even understand the concept of danger and safety.

I can’t say that the sad stories would have ended differently if there had been an alert. But the success of the Amber Alert speaks for itself. Anything is worth doing if it saves just one life.

We talk a lot about autism awareness, and this is what it comes down to. Let the public be aware. Aware of what a child with autism will do. Aware of the inherent dangers. Aware enough to step in and help.

They can’t, unless we tell them. Alert them.

We simply can’t keep losing our children like this. Not when something so simple may have saved them.

I want to change the system. For my child, for your child, for Mikaela. And Owen. And Drew.

To learn more about what you can do to help prevent wandering incidents and deaths within the autism community, please visit The AWAARE Collaboration.

This post is a part of “An Outpouring of Love for The Mikaela Lynch Family.” To read other entries, please visit this site.

Sink or Swim

Posted by wendy on Jun 11, 2012 | 1 comment

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.

Mind Games

Posted by wendy on Jan 29, 2012 | 2 comments

King of the road.

King of the world.