Celebrate

love family
About a week ago I had my version of a champagne anniversary. When I was 23 years old, I met my future husband, who was also 23. That was 23 years ago.

We have officially spent half our lives together. For half my life I have been with this one man, this person who became my family.

I mention this for two reasons. One, it’s worth bragging about. People who know my backstory, wonder how we do it. In this era when roughly 40% of first marriages in developed countries end in divorce, and those are generally finalized within eight years of the wedding, celebrating 23 years in high-stress family situations is so rare it’s treated as legendary.

Second, I mention it because it is more than a number. Those 23 years are half my life, and when I look back on those years I realize how I’ve grown, and how much this man has made me into the woman I am today.

I believe, and I have for decades, that this marriage was meant to be. Whether you call it fate, destiny, soul mates, or life charts, I believe this man and I are supposed to be together. Though I’ve had many experiences through the years that reinforce this belief, none were more powerful than the way we began.

I first laid eyes on Tony on March 21st, 1992. I literally saw him from across a crowded bar, and I was smitten. I had just arrived with “Cassie”, a friend I was hanging out with that night. We were about eight feet in when I zeroed in on this very cute guy. He had Bon Jovi hair, Miami Vice clothes, and a bad-boy look of boredom. He slowly turned in a three-quarter circle until his back was to me. I pulled Cassie close, pointed towards him, and yelled in her ear, “There’s the man of my dreams.”

I feel I should point out that this statement was completely out of character for me. It makes me sound like one of those girls who is always trolling for the next boyfriend. I was never one of those girls. I liked guys, but I rarely let them out of the friend zone. I was almost anti-romantic. So when those words spilled out of my mouth, no one was as surprised as me.

Yet I didn’t take my initial reaction seriously. Tony, who was simply “That Guy” for the first few hours, was just a very cute guy who was likely there with a girlfriend. Cassie and I scoped out a spot, ordered our drinks, and started to dance. And for the entertainment value, I kept my eye out for That Guy.

That Guy moved around. He was with a larger group, but he seemed a little separated from them. (I found out later that he only knew one of them well, and he was feeling a bit left out.) He was not “with” any of the girls in the group, so the possibilities were looking brighter.

Cassie and I talked about it in the bathroom, and I made the decision that I wouldn’t wait for him to notice me. She had hooked up with another guy that night and she was supportive of me doing the same. So I “shyly” approached him at his table, and asked if he wanted to dance.

He later confessed he thought I was more than a little drunk (I was sober). He was in the process of saying goodbye to his buddy, but he decided to give me a dance before leaving the club. Had I waited two more minutes he would have been gone.

I remember that first song. It was Trooper’s “We’re Here For A Good Time (Not A Long Time)”, which was popular in Vancouver clubs at the time. It used to make me melancholy because it reminded me of a friend who had died about a year and a half before. When we danced to that song, its sadness lifted forever.

I even remember the second song, which was a Violent Femmes number that sounds identical to every other Violent Femmes number ever released. But by the end of that song, Tony no longer wanted to leave.

We stayed until closing. Cassie’s beau had to go, so three of us talked and laughed until the lights came on, then we talked and laughed over coffee and desserts down the street. To stay with the taking-charge theme, I got his number. We agreed I would call the next day and we could hang out.

I was sick with nerves about calling. What if he forgot our tentative plans and was already out? What if he had left his house knowing I would call and wanting to dodge me? What if he didn’t remember me that well? What if he changed his mind about seeing me? What if he was really interested in Cassie? What if it wasn’t his number?

I waited until the respectable hour of noon. He was still in bed, but he took my call and agreed to get together. We ended up hanging out for eight hours. I still remember the restaurant, and what we ordered. I remember the buskers and sidewalk artists we saw on our walk on the beach. I remember getting coffee and dessert at a Mexican restaurant, and how Tony hadn’t had churros before. I remember how we walked across the street to a movie theatre, where we caught the early show of “Wayne’s World”.

In the years since there have been countless highs and lows. We love and we anger. We laugh and we yell. We pull together whenever we can and let go when we must. There are things about him that make me melt, and things that drive me crazy. It isn’t often smooth roads with rainbows and butterflies, but we make it through the troubles that destroy other relationships because we are committed to being together. Because we can look at each other when we are at our worst, and we remember that the person we danced with so long ago still has great value, and deserves a little slack.

This is what I have learned in the second half of my life (so far) from my husband, my marriage, and my children. I learned that people change continuously. I learned that fortune ebbs and flows, and that new paths can be forged. I learned there are no guaranties in life, good or bad, and that sometimes miracles come disguised as disasters. I have learned that the greatest builds come after the destruction, and that learning never ends.

Thank you, Tony, Shayla, and Dimitri, for showing me that I must never finish growing up. I love you all with everything I have.

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Finding Dirty Laundry

laundry

I’ve decided to create a laundry primer. It has come to my attention that there is confusion in my family over what dirty clothes look like. I find clean laundry balled up in a a tangled mess of arms and pant legs, tossed back into the hamper beneath wet towels (so now they are dirty). Other times, I have to sneak into the room and search for that shirt I know they are saving.

I know the differences between clean, rewearable, and time-to-wash can be subtle. But most of the time? It’s like, “Seriously, family, what are you thinking?”

So, with this in mind, here are the basics on how to know if the item should be washed or (gasp!) put away. This is not an exhaustive list, but it’s a start.

If you have worn it for a day – it’s dirty.
If you have worn it for more than five hours while out and about – it’s dirty.
If you have worn it for serious cleaning or exercise, no matter how long – it’s dirty.
If you have worn it for five hours while sitting around – it’s good for another wearing.
If it was placed on your bed, folded, with the request to put it away, and it landed on the floor when you finally went to sleep – it’s clean.
If you tried it on and changed your mind – it’s clean.
If it came out of the laundry with a permanent stain – yes, it’s clean. Wear it for sleeping or dirty work.
If it was freshly folded and still warm from the dryer, but the cat laid on it when the laundress’ back was turned and it is now covered in white fur – it’s dirty.
If you have worn it for 72 hours straight and it has chocolate milk and other assorted food evidence on it – it’s dirty (yes, Dimitri, I am speaking to you).
In fact, if it has anything on it that is not part of the original design – it’s dirty. No, you cannot get one more wearing out of it.

That’s it. Simple, right? No reason to sweat (but if you do, toss that shirt into the laundry). I could take this as a springboard for instructions on how to use the washing machine, but that might be a bit much. To quote the late, great Erma Bombeck, “The Good Fairy will take it from there.”

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Like a Hole in the Head

???????????????????????????????I think we all need more pets. Like maybe another cat. Yes, a cat. Vanilla the Cat needs another cat. Shayla Kazoleas needs another cat. Dimitri wants a dog. Tony Chris Kazoleas is going to drop his head in his hands and whimper. Go here to see what triggered this.

And on a perfectly related note, there are obvious times I should not be allowed on the Internet unsupervised.

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Little Help?

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Boy Child is sobbing – full on *sobbing* – over the injustice of the fact that he does not have a baby brother. Apparently, this is the only thing he wants in the whole entire universe. “Baby brothers grow up to be little brothers,” I said. He announced he didn’t care.

I suggested he ask his older sister about the trials of little brothers, but as it is her disdain for him that prompted this demand, she’s not considered a reliable source.

I suggested he ask his best friend, who has a little brother, for wisdom on the subject. Not. Happening.

His dad hears the problem and tried to help as only a children’s entertainer can. I was doing laundry at that exact moment, but I heard Dad suggest a hamster instead, which was met with wails of how Boy Child wants a pet.

Since baby brothers and sisters are not on the agenda for this uterus, how do I get him off this train?

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Knowing What I Know…Would I Do It All Again?

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Don`t worry. This isn’t what the post is about.

Knowing what I know…would I do it all again?

 Yes.

There are no doubts. No pondering the possibilities. If I knew before I had kids that I would be an autism parent, I would still do this.

Would I be different about it? Yes. But I would not give them back if I could.

A few weeks ago I shared on my Facebook page the someEcards pic above. It opened a discussion about the pressures of genetic testing for autism, with the question of how did I feel about it. From there, other topics were introduced, such as eugenics verses the right to know if you are carrying a disabled child, which in turn opened the abortion debate.

While this all had the makings of turning into something ugly in my comments section, I thankfully have open-minded and articulate friends. No Trolls Allowed. But it caused me to ask myself about my moral stance on this. If an expectant parent can know in advance if their child or future children will have special needs, would they still choose to have the child? As soon as I formed the question though, I knew my answer. It was a resounding, “Yes”. I answered the question with Dimitri.

There was already a quasi genetic link established in the autism community when Shayla was diagnosed. Though the chances of having a child with autism were one in 500 (this was 2002 and is higher now), the chance of your second and subsequent children having autism was dramatically increased if your firstborn had it. Like, the odds went from “one in 500” to “likely”. I knew this as we planned our second child, and I went into that pregnancy with full knowledge that my baby could be autistic, too. I also went into it knowing the baby might not, and I knew that even if the statistics proved true in our case – which they did – the second child could fall anywhere on the spectrum. And I knew that autism is just one form of special needs. I knew the risks, I knew the work. I knew the love and the rewards, too.

The idea of having no other children after Shayla due to her autism was akin to calling her broken. She isn’t. She’s smart and she’s creative, and she has autism. I don’t know all the whys and hows, but she is a human being, loved by her family and God as much as any child. And though Dimitri also has autism he is not as affected as his sister. I don’t know what sort of adults they will be. I can’t see right now how independently they will be able to live, or what kind of job they will have, but I do know they will enrich the lives of people they haven’t even met yet. And I know I am blessed – and grateful – to be their mother.

I remember keenly an incident when someone tried to censure me over my choice of having a second child while knowing the odds. They made it clear with a few snide remarks that they believed I was irresponsible for deliberately bringing forth a baby destined to be a drain on society. I had the pleasure of reminding them that my child was just as entitled to life – to be created with love, to be nourished first in and then out of the womb, to be guided, protected with kindness, and to know what it’s like to be loved and wanted – as any other child. Every human being created is entitled to this. It breaks my heart that many don’t have these, but they are entitled, and I will be the parent who gives this to her children.

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A New Perspective on Hair

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This could be a “before” picture.

Boy child got his hair cut tonight. If any of you knows a child with autism, you totally get why this is a major event.

We do his hair at home. Yes, it may take several tries to get it straight, as my friend Nicole has noted with appropriate love and humor, but I can sneak up on him with the scissors and snip those annoying little missed hairs. (Nicole solves the whole problem on her two boys by using the clippers. She has offered up her services to us a few times, and we both chuckle at how fast my dude can leave the room screaming.)

Most people just run their kids over to the hair salon that features trains and race cars in place of chairs and a TV for every client. These places don’t work for us. At all. The staff throw their hands in the air and give up. One, because he’s squirming and fighting and gripping their wrists as they try to work and we are all scared of them cutting him and not necessarily by accident. Two, he’s screaming like a victim in a slasher movie and the whole mall probably hears him.

He leaves their salon with a crooked haircut and enough hate in his heart to sink a Uboat. And I leave knowing I overtipped for a crappy haircut.

Still, there is another reason I do his hair myself. I noticed by the way he squirmed that the problem was more than just a sensitive scalp. No one could touch his neck. Like most kids with sensory issues he hates anything touching his hair, but trimming the back was a whole new level of Hell No.

And then the light bulb went on. He’s just like me.

Growing up I had a weird sensitivity to my neck. It doesn’t bother me so much anymore, but well into my teenage years certain pressures, like a stream of water right at the hairline, would hit some nerve, and this nerve tickled my kidneys.

That’s right. It tickled. At my kidneys. And not a pleasant and relaxing tickle. You know those awful tickles that grownups used to do on kids (and some still do) because it brought out the gut laughs? And they since have declared it a form of abuse? That’s what I got at the nape of my neck. Thankfully, since I was a girl I never needed my hair cut that short or that often, but shampooing was not fun. It was tortuous and nothing helped.

Dimitri doesn’t have the luxury of only occasional haircuts. He hates it. I hate it. I admit I let his hair grow for months to spare us both the trauma, but eventually it must be done.

Some of you probably wonder how we even get him to sit in the chair. You might even wonder if duct tape is involved. A reasonable query, but no. Nothing that cheap. It’s the running promise from his father. Every time that kid gets a haircut, he’s earned a trip to the toy store.

From Dimitri’s point of view this holds the title of Best Bribe Ever. When he really wants to earn a toy he doesn’t do chores. He doesn’t work extra hard for better grades. He just comes up to me and says, “I want a haircut.”

Which means we have found a brand new way for a haircut to set us back $40.

 

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Thankful 365

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I took this pic a few years ago after a family day spent on public transit and downtown Vancouver. As you can see from their smiles and general sibling love, it was a day of good adventures.

Every time my children stand their ground, I am thankful they have the confidence to persist in what they want.

Every time they argue with me, I am thankful they can articulate their point.

Every time I am bombarded with minute of their current interest, I am thankful they can remember and recall all those details. They are not stupid. Information gets in.

Every time I have to book appointments, get to appointments, attend meetings, and devote time and energy into looking for specialists and service providers few of my friends will ever need, I am thankful I live in a country where help for my children is not only available, it’s covered.

Every time I handle someone else’s meltdown, I am thankful I have the tools and the resources to do so. Patience is finite. Knowledge is infinite.

Every time I say bedtime prayers with my children, and every time I kiss them goodnight, I am grateful that I can. Every time they tell me or show me that they love me, I am blessed to be their mother.

Every time they fight with each other – and I mean EVERY time – I wonder what sort of idiocy made me think reproducing would be good thing.

 

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Umbrella Wars Diverted

Dimitri in tie

He felt the tie added a touch of class to the outfit.

Convo with (almost) 10 year old boy:
Boy Child: “Mom, where’s my umbrella? Can I play with my umbrella?”

Me (rising from chair) “Are you going to play responsibly with your umbrella?”

Boy Child: “Yes.”

Me: “Do you know what playing responsibly with an umbrella means?”

Boy Child: “On second thought, never mind.”

I don’t actually know if he figured out that responsible umbrella use is boring, that I was planning to monitor him with it, or if he was dodging a lecture on it. Either way, I suspect I saved someone this morning from a world of hurt.

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We Remember

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IN FLANDERS FIELDS
By Lieutenant Colonel John McCrae

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place: and in the sky
The larks still bravely singing fly
Scarce heard amid the guns below.

We are the dead: Short days ago,
We lived, felt dawn, saw sunset glow,
Loved and were loved: and now we lie
In Flanders fields.

Take up our quarrel with the foe
To you, from failing hands, we throw
The torch: be yours to hold it high
If ye break faith with us who die,
We shall not sleep, though poppies grow
In Flanders fields

I am neither a pacifist or a fighter. I want world peace, and we still don’t have it.

More than I hate war, I hate the need for war. I hate the need to send our young adults into the fray of death, where even those who are not physically harmed are forever changed. I hate knowing that if we don’t step in thousands will be tortured or murdered. I hate that there are people capable of such atrocities. I hate that these regimes are so terrible that the people who live there are too afraid  to stand up for their human rights.

For all you who have served, thank you. For all you who love someone who served, my gratitude to them. I know very few of their names, but I am acutely aware that my life is infinitely blessed because of them.

Remembrance Day is for those who fought as soldiers because of tyranny, because of hatred, because of blame. Presidents and generals are nothing without soldiers, thousands upon thousands who serve and die in battle so that my children will never feel the reasons why.

Remembering soldiers is not the same as supporting war. All good people hate war. All good people hate killing. But all good people must make a stand against the bad, and when the bad have risen to great power, good people must walk into their hell, do what they hate at great risk to themselves, take up the torch of those who have fallen before them, so that other good people may live freely.

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This is What She Can Do

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These pics are just two examples of what Shayla taught herself to do in Blender, a 3D graphics program. She follows tutorials found on YouTube.

I promised an update on the homeschooling, and this is the latest development. Don’t worry – it’s good news.

Yesterday (Thursday), we had her IEP (Individualize Education Plan). How can a homeschooled child have an IEP, you ask? Here in British Columbia, Canada, the Ministry of Education has incorporated a model of public-school curriculum with homeschooling families. We receive appropriate assignments from her teacher, take them home and work on them together. We meet again in two weeks, review the work, and receive the next assignments. It is called “Distributed Learning” or “DL” (parents also have the option to take over the curriculum for full homeschooling, but we opted for DL). DL is flexible, with a mix of classroom electives and kitchen-table work. However, her autism presents challenges which are itemized in the IEP, along with plans on overcoming or working around them while pursuing a publicly funded education.

Just an itty-bitty back story. Both our kids have ASD, our (almost) 15 year old daughter and our 9 year old son. Dimitri, our son, is getting along alright in school (though they have recently started the testing for dyslexia on my request), but Shayla did not thrive (sorry, sweetie).

Every year, we would enter into her IEP meeting with hope that this year would be the year we figured it out. We would find that right combo of staff and curriculum and classmates to turn the key. We never did.

I should point out that we have made great progress in the ten years she’s been a student. All of us – most especially Shayla – have put in tremendous effort to make school a rewarding and productive experience. We’ve been mostly blessed with great people on our teams (some we were happy to see leave), but by the time we left an IEP meeting we felt slightly ill, like everything was going to be exactly like the years before and that someday, somehow, it was not going to be all right.

Shayla is smart. I don’t mean like Rain Man splinter-skill smart. I mean, she can leave you dropped-jawed in awe with what she accomplishes. She just doesn’t thrive in a classroom. She needs unlimited time to complete tasks, reminders to stay on task, tasks that spark her interest and creativity or, if not, a teacher who can make a dull assignment manageable. She needs absolute silence as she works, no movements in her peripheral vision, and no distractions. She needs someone with her to see when she needs to move, eat, break, or just be brought back to focus.

Her IEP’s always emphasized her struggles. She was never “smart”, according to her IEP. She had skills and strengths, but for kids like her the IEP is not about skills and strengths. It’s about plans and strategies for staff to react to those times when her challenges win.

I strongly suspect that Shayla is a 2e (twice exceptional) kid. Her autism is combined with intellectual and creative gifts. (Hint: I strongly recommend picking up the book, “Bright, Not Broken” if you have a child with autism, ADHD, ADD, or any type of mental or behavioral diagnosis.) She doesn’t “study”. Study involves memorizing information handed to you by an adult with the understanding you will be expected to prove your memory skills later during a test. She “learns”. She finds subjects and projects that excite her, that trigger her curiosity and her desire to achieve. When one “learns” something one doesn’t have to “study” for it, because the information has been perfectly processed and integrated into their daily life.

I know Shayla tried her best in school. She puts serious effort into managing her challenges, but she’s human and challenges are hard because, well, they are challenges. But she very often succeeds. I know, because I know what her challenges are and I know when they come up against her. I know she doesn’t react the same way all the time, and there is a whole host of circumstance that can affect her. So I know she works hard at being the best she can be, likely harder than most adults.

I have often said that sometimes – just sometimes – miracles come disguised as disasters. Sometimes, when all has been torn asunder and you must pick up the pieces, you realize you had them in just a bit wrong, but you had gotten used to seeing them in that way you never considered it could be better. That’s what happened to us all last year, when we effectively fired that high school and said, “We love her and we are not letting you near her again.” We had to have someone really terrible, really cold and disrespectful not only to us but to Shayla, to make us see that she had to get out. She wasn’t thriving before, but we – all of us – went into each year with fresh hope. Now that she’s out, I can see the opportunities we have to set her free of her challenges and let her shine, opportunities that, by the nature of the public-school model, we’ve never had before.

This is what yesterday’s IEP meeting brought me. As per usual, we worked from last year’s copy and made our adjustments. And we were slashing that thing to bits. This challenge, that challenge, all of it no longer relevant because she is out of the classroom.

Previously, all the work involved in utilizing the IEP fell to the Education Assistant, a woman (usually) who had the hardest part of the job for the lowest pay. We – me, my husband, and Shayla – were dependant on the EA to help reach these behavioral goals with a result that could be quantified with a number. When the everyday was poised for successes and setbacks, how do you measure overall growth? “Your child has had a 20% reduction in Recognizing Personal Space, but a 30% gain in Proper Hygiene.” The measurement is subjective. Has there been a drop in reminders, prompts, and outbursts? That has as much or more to do with her external management (school staff) as her internal management (self-regulation), a fact we learned last year.

She no longer has an Education Assistant. She has parents. We are not the front-line soldiers in a bureaucratic system. We are the ones the bureaucratic system had to answer to. If something works, we do it. If it doesn’t, we let it go. For the first time we have the responsibility to fulfill that IEP. Us. Her parents. And you know what? I’m revved.

I know I could not have done this a decade ago. I owe a debt of gratitude to the amazing staff we’ve worked with through the years she attended the brick-and-mortar schools. Many thanks to Alana, Cathie, Melissa, Carmel, Lisa, Kyla, Mrs. M, and others who gave us this foundation. Thank you for being there for her, for us, for nurturing her during your time with her not because it is your job but because the kids in your care are more than a job. Thank you for giving us the confidence and security to leave our precious child with you, and thank you for showing us how school should be so we recognized when it wasn’t.

This feels good. It feels like we are opening doors rather than closing. She has smarts, she has family, and she has support. She is going to rock this.

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