Posts Tagged "amazingness"

There is A Light That Never Goes Out

Posted by on May 12, 2018 | 0 comments

There is A Light That Never Goes Out

I was fifteen years old when Meagan was born.

At the time, she was just another cousin, one of ten (plus a niece and two nephews) who came one after the other, in rapid succession, over a few short years. Several more cousins followed later, but the mid-1980’s was our family’s baby boom. Meagan, another cousin, and my first niece were born just months apart in 1984-85.

My mother was the oldest of four girls by eleven years, so I was twelve when the first cousin made her entrance. I went from two brothers to a whole lot of little girls (and a couple of boys) in an instant. I loved it. I loved them all. Every single one of them.

Family get-togethers took place at my grandparents’ home in Indianapolis. Thanksgiving, Christmas, Mother’s Day, Indy 500 Day… upwards of 40-50 people would show up to celebrate, eat, and just be together.

Family. A wonderful, loving, huge family.

My mother was the only daughter to leave Indianapolis. She, my father, and my eldest brother moved to Michigan, just before I was born. My big family lived close to each other, something I never had. When other kids went to Florida on spring break, we went to Indianapolis. And I loved it. I couldn’t get enough of my aunts and uncles and brother and sister-in-law and nieces and nephews. And cousins. So many cousins. I reveled in every year of their lives and loved watching them grow into individuals.

They talked to me. They told me things they couldn’t/wouldn’t tell their parents. I was the cool older cousin who they could confide in and would call them on their shit when they were being idiots.

I thought of them more as nieces and nephews than cousins, because I was so much older. I still do.

I used to stay with Meagan’s parents, my aunt and uncle, on their property south of Indianapolis. They let me smoke. They were cool. Their kids were cool. he rest of my family was cool in their own ways, but this family and I jibed, really well. They’re my speed. They got me.

The children had the run of a forest, and took full advantage. Meagan had the spark of adventure from early on, a pure blend of her older sister and brother. She was her own person.

When I graduated from college, I moved from Michigan to Georgia, and only saw my family once or twice a year. Meagan actually came to visit me once there (mostly for a place to stay while she and her friend went to some concerts).

She was nineteen.

Twelve years after I left Michigan, I moved to Los Angeles, and saw them even less. And then, in 2010, my young family and I moved to British Columbia.

The last time I went home to Indianapolis was April of 2009. Meagan wasn’t there; she had moved to Austin, TX.

We’re planning a trip home in August for a family reunion. I had hoped she and her husband would make the trip as well.

A curious thing about my family: my mother moved away from the homestead, but my two brothers moved back (one a couple of hours away, but still Indiana). Everyone else stayed close. Except four of us. One child from each sister’s family moved away: me, a cousin who moved to LA before I did, a cousin who is now in Pennsylvania, and Meagan, who went from Austin to Seattle.

Over the years, I’ve seen a few family members who have ventured West. Mostly those coming out to visit Meagan or my oldest nephew, who had also moved to Seattle around the same time we came north.

Two years ago, I took my four boys down just across the border into Washington, for a picnic at my (second) cousin’s house. Meagan would be there with her mom and stepdad, my aunt and uncle, who had come to visit.

I was beside myself. It had been seven years since I’d seen any of them, and I was craving family time in a desperate way.

I pulled into the drive, and barely got the door open before Meagan was dragging me out of the van, yelling “WENDY! I LOVE YOU!!” She gave me one of the biggest hugs of my life. It felt like home.

My cousins and I all look pretty much alike. It’s obvious we’re related. My aunt looks like my mother, who passed in 2000. Sitting there with them, I was home, if only for an afternoon.

Over the following months, Meagan and I talked more, and, last summer, we finally got a chance to hang out and talk and just be together for a few hours.

Home.

She took me to her restaurant and proudly announced to anyone who would listen, “this is WENDY!! She’s my COUSIN!!”

She also picked up my son from SeaTac when I couldn’t get down from Vancouver in time.

“How will I know who she is, Mama?”
“She looks like me, baby. You’ll know her.”

And he did.

The three of us went to her restaurant for lunch and laughed and ate too much. I hated leaving.

I texted with her a lot, mostly about when/if we could actually get together. A lot of “I love you’s” on both ends.

If Meagan loved you, you knew it. You felt it down into your soul.

A few weeks ago, my nephew got married in Seattle. My husband and I got a sitter and went down for the weekend alone. I was beside myself with excitement, for so many reasons. I was finally getting to meet my two-year-old grand nephew for the very first time. I was finally getting to see my niece for the first time since 2009. I was seeing my big brother and sister (in-law only as a technicality), her mother, and my younger nephew again. And, I was finally going to meet Meagan’s husband of nine years, Nik.

The weekend did not disappoint.

Friday night we had no plans and the others were getting ready for the morning wedding, so we met up with Meagan for drinks.

Sitting at the busy bar where Nik works (trying to figure out which employee was him), David asked about her. He hadn’t seen her since probably 2006 and didn’t really remember her all that well.

“You’ll know her. She looks like me.”

And he did.

“WENDY!!!” came booming through the bar.

“MEAGGIE MAY!!” I boomed back.

To her husband: “See, she called me Meaggie May! She’s family!”

Nik knew who I was, too.

Meagan and I look so much alike.

We drank and laughed and were loud.

We moved on to the next bar, a Buffalo Wild Wings. The place was pretty empty, but the booze flowed and that was good with us.

We talked about restaurants. Both of us finished college, got real jobs, and quit them in favour of working in bars.

We talked about life. We talked about family.

So much about family. We laughed about her and her siblings as children and my adventures with her parents. We cried about losing my mom. We shared silly stories about our lives together. And we sang songs. Loudly.

Everything we did that night was loud.

I could be loud with Meagan. She got me.

Out of all of my cousins, Meagan got me. We were kindred spirits with no fucks to give.

She accepted me for my loud and crazy and emotional self. It was easy – Meagan, too, was loud and crazy and emotional.

Two peas in a pod.

We sat together at the wedding, had drinks together between the ceremony and brunch, then drank more together at the “after party” that night in Seattle.

When the party was over, we all moved elsewhere. She knew where to go; she knew the people working there.

She was me when I lived in Atlanta, hooked in to the bar scene. I relived a little bit of my rowdy youth (my early 30’s) through her.

The next day we were supposed to meet up again. I had a box of canned goods in my car for them. I can everything in sight; it’s one of the things I love to do nowadays. Every chance I get, I take them food. I feed them. I brought a ton of stuff that weekend.

We got caught up visiting with my brother’s family (and my sweet grand-baby), then had to get home to relieve the sitter. We missed seeing Nik and Meagan one last time.

I’ve been texting with her for a couple of weeks now, trying to figure out where we could meet so I could get the jars to her. We finally decided to meet up in the middle – the beach at Deception Pass – so we could spend the day playing with the kids instead of just handing off a box of canned goods in the parking lot of Target.

The box is still in my van.

Her last text is still on my phone.

She’s gone.

Three days ago (has it been that long?) Meagan passed away suddenly.

We still don’t know why.

But it doesn’t matter.

She’s gone.

She was 33.

The beautiful girl whose diapers I changed when she was a baby, and played with as she grew. The beautiful woman who had become not just family, but my friend.

She was my friend.

She got me.

She loved me.

Meagan had a smile that absolutely radiated. A lot of people say that about smiles, but Meagan’s smile was bigger than life.

She was alive on a level most people only wish for.

She was vibrantly present, and when she was near, you knew it. She focused on people like a laser beam. Her joy of life and love for everyone in it was palpable.

The loss of her is palpable.

The pain is unbearable.

The hole in the world is cavernous.

But I will gather myself together, take the love she gave me, and put it out into the world.

Meagan was the brightest light, and she will shine on through everyone she loved and who loved her.

And every time I see her picture, I will smile.

And be loud.

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

Meagan was the breadwinner in her family while Nik finished college. Her coworkers have started a GoFundMe to help him get though this difficult time. If you’d like to contribute, here is the link.

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Facing Our Fears

Posted by on Sep 15, 2014 | 2 comments

Facing Our Fears

I’ve been away for a bit. I’ve been in a self-made cocoon of sorts, waiting for the right time to reveal my “new” self.

Or the self I’ve always been, but didn’t really know it.

Anyway, I’ve been thinking on the best way to start the conversation here. This place that I’ve built to laugh and cry, and bemoan, and celebrate autism in our family. This place that has become a safe haven for me and others, a place where it’s OK to be our true selves, autism, warts, and all.

I thought for a while that I needed to bring platitudes and great revelations. That I needed to be profound.

And as I sat, cozy and safe in my self-imposed little box, it came to me.

Rather, Jack came to me.

Jack has been my teacher on so many levels, and I should have known this would be no different.

A couple of weeks ago, we went to a small amusement park and a big water slide park on the same day. We don’t do amusement parks, as a rule, for a few different reasons: Money, crowds, autism, crowds, crazy children, lines, money, and, of course, crowds. The kids have been on a few rides here and there (most recently the Great Wheel in Seattle), but we haven’t done a full-fledged amusement park since Disneyland years ago when the kids were small.

The only water slides my kids have encountered have been the small ones at a downtown spray park, and the slide at our local pool (not small by any means, but not theme-park-sized).

I was worried how Jack would do on the rides, since he really seemed to hate them when he was younger. I also didn’t know how he would react to the water-slides, as you can’t exactly avoid being splashed in the face or dunked underwater.

To our relief, the amusement park was both quite small and fairly empty. The kids didn’t have to wait in line for anything. It was like an Autism Miracle.

He handled it all. Really well. By himself.

For instance, he did this:

boats

He both shot his brother in the face, and took many hits in return. All with a big grin.

He did this:
swings

 

This one amazed me. Jack HATED swings as a baby and small child. It took about two full years of occupational therapy to get him to not only ride a swing, but enjoy it. Now he’s a swinging fool.

He did this:

 

balloons

This ride made my husband ill just looking at it. They’re up there spinning around, while spinning around. Like teacups up in the air.

 

And then he did this:

bucking bronco

If you can’t tell from the photos, this little ride here is like a carousel on acid. You sit on a horse, and the platform starts to rotate. Then, the whole thing rises up one side of an arc, then down and up the other side. All while the platform is still rotating. Like someone thought the pirate ship that goes back and forth is a little too tame, and the carousel is just not dangerous enough.

So yeah, he rode that thing. Smiling.

We headed to the water slides, and Jack took off alone. I was worried about him, but figured he’d end up entertaining himself in the splash areas or pools.

Toward the end of our visit, my child ran up to me, dripping wet.

He had done this:

waterslide

 

 

FIVE TIMES.

He was so excited to tell me. “Mom! I really conquered my fears today!”

And then he ran off to do it again.

I realize now that I haven’t been hiding in contemplation so much as in fear. I’ve been afraid. This post changes everything for me, but it’s time. If my child, who has come so very far in his almost-nine years of life, can stand up to his own fears and break through to the brighter side, so can I. And I will, for him.

This is my vertical drop.

So, here goes.

My name is Wendy, and I have Asperger’s.

I am autistic.

And I am happy.

 

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Canucks Autism Network Sports Day Adventure!

Posted by on May 26, 2014 | 1 comment

Canucks Autism Network Sports Day Adventure!

As much as I complain about the state of autism support here in the Lower Mainland, we also have some pretty cool things going on. There are several societies that provide access to camps, supports, and many other activities for autistic individuals.

One group here doing it really right is the Canucks Autism Network (CAN). They help keep autistic kids involved in sports and a lot of other social events. CAN usually tries to involve siblings as well, to help foster a whole family experience. We absolutely love them.

Jack and I were very excited to attend the CAN 2nd Annual Sports Day on May 18th at BC Place. It was a day of serious fun with representatives from the Vancouver Canucks, the Vancouver Whitecaps FC, the BC Lions, and the Vancouver Canadians. I could tell you all about it, but I’d rather show you. Enjoy!

We arrived a bit early, so it was a good hour before the event started. CAN had set up face painting and colouring, but the waiting still got old after a bit. Anticipation and autism don’t mix well. The CAN volunteers are seasoned, though, and did their very best to keep everyone intact.

Face painting is an essential part of every adventure.

Face painting is an essential part of every adventure.

 

waiting is hard

Waiting, and peeking to see what’s happening in the stadium.

 

Here we go!

Here we go!

 

More waiting. Jack says all of the downtime was "abominable."

More waiting. Jack says all of the downtime was “abominable.”

 

As everyone was introduced, we got a cool view of everything from above.

 

A birds-eye view of the event.

A birds-eye view of the event.

 

Waiting is tough, but astroturf is an awesome sensory experience.

Waiting is tough, but astroturf is an awesome sensory experience.

 

Finally ready to go!

Finally ready to go!

 

The kids were divided into four groups, and each group spent twenty-five minutes with an activity, then rotated to the next one. Jack’s group had hockey first!

 

Getting tips from Canucks left wing Daniel Sedin.

Getting tips from Canucks left wing Daniel Sedin.

 

There were photographers and cameras capturing it all, and showing everyone on the jumbotron. Jack noticed it quickly, and played right to the camera. That’s my boy.

 

Jack saw himself on the Jumbotron. So did Fin.

Jack saw himself on the Jumbotron. So did Fin.

Fin, the Canucks mascot, had a great time with the kids. He has a thing about chewing on their heads, though. They should keep an eye on that.

Jack and Fin.

Jack and Fin.

 

Next up was football, and Jack learned how to run the ball, throw the ball, and do a wicked touchdown dance.

 

Running the ball with BC Lions defensive back Matt McGarva.

Running the ball with BC Lions defensive back Matt McGarva.

 

Going for a super-high 5 with BC Lions fullback Rolly Lumbala.

Going for a super-high 5 with BC Lions fullback Rolly Lumbala.

 

We moved on to soccer, and Jack put the Whitecaps guys through their paces. A lot of the other kids were ready for a break, but Jack kept on going. And going. And going.

 

Going one-on-one with Whitecaps FC assistant coach Martyn Pert.

Going one-on-one with Whitecaps FC assistant coach Martyn Pert.

 

Trying to get past Whitecaps goalie David Ousted.

Trying to get past Whitecaps goalie David Ousted.

 

Finally, we moved over to baseball. After some pointers from Mama, Jack smacked a few line drives.

 

Definitely an American boy - he had the best form there!

Definitely an American boy – he had the best form there!

 

Canucks announcer Ed Murdoch closed out the event.

 

The voice of the Canucks, announcer Al Murdoch.

The voice of the Canucks, announcer Al Murdoch.

 

We had a lot of fun. Thank you CAN, for everything you do!

 

We had an amazing day - thank you, CAN!!

We had an amazing day – thank you, CAN!!

 

*************************************************************************8

Click HERE if you’re interested in joining CAN.

Click HERE if you’d like to be a CAN volunteer.

Click HERE for information on how to donate to and fundraise for CAN.

 

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Guess What? I Have Autism!

Posted by on Aug 5, 2013 | 2 comments

Guess What? I Have Autism!

“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.

 

voice mind 2

 

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

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

 

 

 

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Mind Games

Posted by on Jan 29, 2012 | 2 comments

Mind Games
Jack’s mind fascinates me.  It’s complex, beautiful, inquisitive and sometimes unnerving.  He is endlessly curious, and has an eye for detail that would put a crime scene investigator to shame.  Most people who know Jack have enjoyed at least small glimpses into the way he thinks, and whether or not they understand his thought processes, they are appreciated.
Occasionally, Jack has encounters with people who don’t know him and aren’t familiar with his particular perspective.  These encounters are usually positive, with one very notable exception.
A few weeks ago, David was out in our townhome complex with the boys as they rode bikes.  Jack and Lennon are on big boy bikes now, so they have a sort of free reign of the immediate vicinity, and are allowed to ride around while David stays with Kieran on his tricycle.  The rule is everyone must stay within earshot, check in frequently, and pull aside for vehicles.

King of the road.

Jack failed to yield to a car coming through the complex, and the woman driving took issue.  He was definitely in the wrong for not getting out of the way, but we live in a complex full of children, so the driver should have also known to be on the lookout for bikes and scooters and wild runaways.  She pulled into her driveway and pounded a path straight to David.
David knew she was upset, so he called Jack over.  The woman unleashed a torrent on Jack, which, apparently, he wasn’t in the mood for.  She started talking about him needing to watch where he’s going, and he interrupted her, “but! but!”
“No buts!” she kept telling him.
David couldn’t look at her.  He knew Logical Jack was about to take the floor, and there would be no mercy.  He stepped back and let Jack handle the situation.
She continued. “When I’m coming, you need to move to the side of the road.”
He looked at her.  “I don’t even know what your car looks like.”
She blinked.  “Any car.  You need to move for any car.”  She was getting upset.
Jack, of course, did not notice.  “Well, if it’s any car, how do I know if you’re driving it?”
Silence.
He went on. “Cars pass us all the time and you’re the only one getting upset!”
She looked at David.  She’d had enough.  I’m not sure if there was actually smoke coming out of her ears, but David was afraid it might happen, so he encouraged Jack to simply apologize.
“Ok,” he chirped, unfazed. “I’m sorry!”  He turned away and sped off on his bike.  The woman looked at David and huffed off to her home.  We haven’t seen her since.
Sometimes I worry about Jack’s future and his ability to handle difficult situations.  Sometimes I’m pretty certain he’ll be just fine.

King of the world.

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