"Change, when it comes, cracks everything open."
Dorothy Allen

Tuesday, June 25, 2013

Bad Day

We all have them.  I just had me one.

The worst part is...nothing particularly bad happened.  I worked from home, Sawyer went to school.  Sebastian actually spent the morning away from the TV.  I stuck to my new diet, even though I am still learning.  I got a bit of cleaning done, and made a good dinner for the kids.  The house is *relatively* clean and the laundry is kinda caught up.

See, nothing horrific happened.  I still consider it a bad day though.

Work was....work.  Sigh.  It is frustrating and disorganized.  The people I work with, with very few exceptions, are exhausting.  I want so much more in my life, I hate that I am stuck here, spinning my wheels, being fruitless and fearful.

My frustration from work carried over into home.  Sawyer is trying on the best days.  She is at the stage where she very literally is never, ever quiet.  We play the quiet game with her sometimes.  Her record is 9 seconds.  She physically can't do more than that, without talking.  Sometimes, most times, she is funny and hilarious and I can just laugh at the ridiculous and amazing things that come out of her little brain.  But on the wrong day, her constant need for validation and recognition, her endless questions and attention seeking, her need for ongoing physical contact- it drains me (as I type this, she is beside me, fresh out of the bath, leaning on my arm so she can see the words I am typing, even though she can't read them.  I have an ice cube tucked in my elbow, because she says it needs to be there, because she is a doctor, oh wait, let's play school, my hair is wet, where is my spray....Do you see what I mean?)

After a day like today, when I am dealing with fully grown, and supposedly functioning adults that can't take care of themselves, the seemingly incessant needs of my children wore on my last nerve.  I found myself snapping at them, on the verge of yelling and real rage.  I caught it in time, and managed to make some space for myself, by doing laundry and cleaning the bathroom.  When I came back, I was better.  Not good, but better.

Maybe part of it is because I am tired.  I can't remember what it is like to not be tired.  Tired in my body, in my brain, in my soul.  I have had recurring dreams, where I lose my job, where I have to train my replacements.  I dream that I am going on a vacation, only at the last minute to find out that even though I was invited, no one bought my ticket, because they really didn't want me there to begin with.  I dream that I come home and my house is so full of junk, that FACS is coming to take the kids.

Yeah, it doesn't take a lot to read between the lines on these.  Feelings of insecurity, of inadequacy, of being out of control. 

I have been tackling things on my to do list.  Instead of feeling good about that, it makes me angry that it is still kicking around, waiting to be done.  My brother has pretty much finished his work in my yard.  I am incredibly grateful, but also disconcerted because there is so much left that I want to do.  No money or time to do it though.

So, yeah, pretty much a pity party all day long.  And then when I think that, it bothers me that I can't legitimately feel bad about some of the bad things that happen in my life.  I get resentful that I always have to be "fine", that things are "ok".  Sometimes they are, well and truly, and sometimes they are way, way better, right into the world of awesome.  But sometimes, they are not. 

So, anyway, I had a bad day today, for no good reason.  But I am going to try and remember some of the good things that happened.  Maybe it can change from bad, to not so bad.  God forbid, maybe even good.

- found $20 today
- found a winning lottery ticket
- Sawyer had a bath and let me wash her hair, without much fuss
- Sebastian has been pretty good today. He did outside time without fighting me
- The dining room table is cleared off
- I made it to the bus stop in time to sit in the sun/shade a little bit
- I got to work from home
- I stuck to my new diet
- I am not eating crackers right now, even though Sawyer is right beside me eating them
- I mopped the floors
- I vacuumed
- Sawyer's floor is clear.  Nothing else is clean, but at least the floor is
- I got to sleep all night in my own bed
- I got to turn the air conditioner off today and open the windows
- Dinner was pretty good
- Adam laid down mulch today.  It looks great

That's it for now.  Some days, you just have to cut your losses.  I am going to finish the laundry, start my new porch sign and go to bed early.  Tomorrow just might be a better day.

Rosie N. Grey
The N stands for "nincompoop".

Thursday, June 20, 2013

Last Day

Today was Sebastian's last day of this school year.   He was pretty happy about it, as would be expected, but not quite as happy as he has been in previous years.  He is just excited that he gets to spend tomorrow at home with me, as I am working, and he gets to watch TV.  I haven't told him yet that I am going to take him to a matinee this weekend to see Monster University as a celebration for finishing the school on a high note.  We will save that little tidbit for later, or I will never hear the end of it!

As you all know, Sebastian attends a private school called Julien School for Alternative Learners (previously known as the Little Brick Schoolhouse).  This was his first year there, and my first year dealing with tuition and learning the ropes of being outside of the regular public school board.
Every Friday is community day. 
One of their community trips was to Geoff's comic shop. 
How is that for an awesome school trip??
Working at the comic shop.
I have talked a bit in the past about his experiences with school- how much he hated it, and his teachers, the struggle, the fights, the failures.  This year was so different.

When you have a special needs child, you have lots of meetings.  Lots.  Most of them are useless, you really don't do much but reclassify your kid, so that the school board can get the funding that they need.  Or the teacher talks to you about how your kid doesn't do what he is "expected" to be doing, because of A, B and C.  Or how the goals they have set for your child, arbitrarily and without your input, are really reflective of what your child is capable of and how it isn't practical to expect too much or set goals too high.

I am sure this isn't everyone's experience.  But it seemed to be mine.  Pardon the cynicism.

But once a year or so, you have a meeting where you are asked to define your goals for your child.  I hate this meeting.  My goals were always simple.  Get him to pay attention and participate, even a little.  Help him read.  Get him to print his name.  Anything normal would do just fine.

Fast forward to this year at Julien School.  Our "goal setting" meeting rolled around.  And when they asked me what my goal for Sebastian for this year was, I was speechless.  I had nothing.  Nothing.  Everything I normally said, he was already doing. 

Me being me, tough and resilient, always prepared, did the only thing I could think of.  I burst into tears.  Of course I did.  Sheesh.

What I told them, was that I really had never had goals, not real ones, for Sebastian.  Goals mean looking ahead, and working towards something.  You have to have faith, and strength and hope to have a goal.  After only 3 years in the DSBN, I was out of that, where school and Sebastian was concerned. 

They clucked at me, and soothed my frazzled self.  They understood but also chided me, gently.  "You set your expectations too low.  You need to change that.  You need to let Sebastian surprise you, you need to challenge him and let him rise to that challenge.  He doesn't achieve, because you don't expect him to achieve."

And as incredibly hard as it was to hear that, they were absolutely 100% correct.  So, we have been trying to change that. 

So, here we are, 10 months later, at the end of his first year of his new school. He is amazing.  He surprises me every day.  I hope I am surprising him too, with what I expect.

Through the summer, I am setting a curriculum of learning for him, to keep him in the habit.  This will hopefully give me a bit of a taste of what homeschooling is like.  There are a million resources available for free online. It will take a bit of work, time and dedication (not to mention a printer) but I think I can put together some lessons, to help keep him sharp.  Keep him learning.  Keep my expectations high.

Recently, I was asked by the president of the school to speak as a Julien School parent, at their recent rebranding celebration and enrollment drive.  I agreed, and was the only parent speaker (that caught me off guard!  I expected to be one of many!)  The other speakers covered everything important- what and how they teach, the reasons behind it.  Their flexibility and experience. The costs.  Just before me, one of the assistant teacher spoke and read a piece she had written on change, and how change, seen so often as a horrible thing for autistic kids, is really an amazingly positive force of nature for the Julien  School kids.  (yeah, I cried again. I recognized when she was talking about Sebastian, of course.)  I got to go last.

If I do say so myself, I brought the house down. In a good way.

I started by saying that while there had been a lot of amazing and important information shared with them already that night, I was, in my own humble opinion, the most important speaker they were going to hear.  Because I was them.  I was the parent sitting out there, absorbing, trying to make the right choice, for my child, for my family.  And wondering just how the hell I was going to make it work (they laughed here, so I knew I was good to go. :)

I spoke a little about Sebastian's journey towards the Julien School- how we started therapy at 18 months, transitioned to the Niagara Children's Centre for fulltime therapy and school when he was 3, and for the first 4 years of his education, we were spoiled rotten.  Then we moved to the DSBN and things when downhill.   I was good, and didn't name names, or point fingers, but said that Sebastian and public school weren't a good fit, for a number of reasons. 

First day of school
Julien School, Sept 2012
And then I talked about my conversation with Camille (the president and founder of the school.)  I said that we were into Sebastian's 3rd year at school, and things weren't going well.  We wanted to take him out, but didn't know what to do.  I didn't feel qualified to homeschool him, and didn't have the time.  We were lost.  And one day, in December, Camille, who knew everything about Sebastian- his strengths, his weaknesses, everything, started talking to me about an idea she had.  An idea for a school.  And as she talked, it sounded better and better.  And (I said), I will never forget what she said to me next.  She looked me in the eye and said "Anita, Sebastian would be perfect for this."

Up until this point, Sebastian had never been perfect for anything.  He was always too slow, too different, too unfocused, too young, too old, too..whatever.  He didn't fit anywhere, except with us, his family.  And now?  Now, he was perfect.  For something. 

I hadn't even checked with Geoff yet, but I was ready to sign him up.  If I had had to, I would have given her a check that day. 

When I shared this story with the group, I cried.  A little.  They cried too.  A lot. 

mother effing fractions. 
Slice of fried gold.
I talked about the changes.  How he couldn't print his name when he started.  Now he prints for fun.  Just cause he can.  I talked about how on his last IEP, one of his goals was to count to 20 (ridiculous I know.)  The night he brought fractions home as homework, I literally sat at the kitchen table with him, and cried.  I wept, because I never thought I would see that.  I wept because someone, somewhere, was expecting my son to do great and powerful things. Like fractions.

By the end of the speech, people in the audience were crying right along with me.  The lady sitting behind me, touched my shoulder and told me that I had sealed the deal- she was enrolling her son that night.  Strangers hugged me and thanked me.  The teachers were thrilled.  Camille told me she wanted to take me on the road with her.  I told her my appearance fee could come off the top of my tuition. 

And now, it's over.  For a while. 

For the next 2 months, I don't have to think about school.  I don't have to pack a lunch (which, irrationally, I hate doing.)  I don't have to rush in the morning to get him up and dressed and fed and out the door.  For one whole month, I don't have to worry about tuition (first cheque is due August 1.  Yippee.) 


I am grateful for this year.  I am grateful for this break.  All and all, I am just completely and totally grateful.  For Sebastian.

 Rosie N. Grey
The N stands for "next September is soon enough."

Wednesday, June 19, 2013

Steve Miller and Slurpees

Most nights, I get cravings. 

Part of it is me trying to eat better, knowing that there are things that I can't or shouldn't have anymore, so automatically, I want that thing.  RIGHT NOW. (read my post about now vs later for more insight into that.)

Sometimes, though, it will be an association thing.  I will cut the grass or garden in the hot sun, and automatically want a beer afterwards.  I will smell someone BBQing and want ribs.  Stuff like that.  Those associations are fun and I like giving into them.

The other night, I wanted a Slurpee. 

I normally drink diet pop.  Diet Pepsi is my favourite.  But when it comes to Slurpees, I like Coke.  The real stuff, frozen and packed with ice.  I heart them so much.  I try not to have them very often, because my stomach usually starts to hurt within 5 minutes of starting and I get all jacked up on caffeine and sugar, so sleep isn't really an option for a couple of hours. 

But oh, the joy.  It is cold and icy and wonderful in a cup.  And it brings back so many memories.

As I drove to our closest 7-11 to get my fix, I realized I was driving with my windows up.  That is unusal for me.  As soon as it is nice in the spring, I roll the windows down, so I can smell the breeze, feel the warmth of the sun and drink it all in. It is one of my favourite things in the world.  I usually get a driver's tan- from the elbow down, on one arm, as it hangs out my window.

So, I got my Slurpee, and headed back home.  Window is down.  Radio on.  Steve Miller came on the radio.  Then Bad Company.  And like a slice of sunshine, like a warm summer breeze, the memories came back in.

I remember driving with my friends when I was 17 years old.  I remember what it felt like to have a cold pop between your knees, your shoulders burning comfortably with the sunburn you got earlier in the day.  I remember the feel of your hair, curly and long and messy, blowing like crazy in the wind coming through the window.  I remember knowing that the boy in the backseat is watching you laugh, is holding his hand, so close to yours, but still not touching.  I remember those butterflies, when you would smile. I remember flip flops, and sandy feet.  I remember cutoffs and sweatshirts to stop the chill.  I remember what it felt like to sit on the hot trunk of a car, still holding the heat from the day, as the day turns to night and everything cools off around you.  I remember how the last hour before curfew was always the best.  Things started happening, and good ideas were born.

There was a soundtrack to that time.  I sang along to bands and songs that can raise a lump in my throat today.  I see certain people, from that time, and a song pops into my head.  I see those people the way they looked at 18. 

I miss that time, with all my heart and soul.  When I worry about my bills, and my job and my kids and my health, I remember what it felt like- Summer.  Steve Miller.  Slurpees.  I feel better.  Sad, nostalgic, but better. 

Because I had those times.  I lived them.  I have the memories, so that means they were real.  I appreciated them enough that I have a special place in my mind for them. 

And I will always have Slurpees.

Rosie N. Grey
The N stands for "nostalgic".

Summer Loving...AGAIN

So, for the past couple of summers, I have created a list of things that I want to do, accomplish, go, become....whatever!  Just stuff that I want to have happen in the few, short, intense months we Canadians call summer. 

Since I love lists so much, I am gonna do it again.  Here is my 2013 Summer List of Awesome.

1. Plant a garden
2. Go to a "pick your own" and get something. 
3. Make jam with the something that I got at the "pick your own"
4. Have bonfires all the time
5. Build my backyard beach
6. Use my backyard beach
7. Put up the pool
8. Use the pool- all the fricking time
9. Work on school work with Sebastian.  Test out what it is like to homeschool
10. Get the kids doing their own chores.
11.  Purge everything.  Purge, purge, purge.  At least the linen closet and the storage in the basement.
12. Go to an outdoor concert
13.  Have a girls night/day, complete with fruity drinks, awesome music and lots of laughs
14. Make a shit ton of signs to sell for Sebastian's tuition
15.  Go to a carnival
16.  Bake a pie
17. Go to the beach
18. Go camping
19. Go fishing
20. Take one whole day.  Just drive. 
21. Go on a date with Geoff
22. Take the kids for a hike.  Teach them stuff that I know.
23. BBQ for family
24. Garage Sale. Find a treasure or two
25. Get my taxes done
26. Organize my paperwork to prepare for next year's taxes.
27. Get my laptop hooked up to a printer.
28. Get a printer.  Oh, and ink.  And paper.  Yep.
29. Read an amazing book.
30. Go to the zoo.
31. Eat ice cream.
32. Go for a bike ride.
33. Get a sunburn and tan lines.
34.  Start exercising again. 
35.  Cut myself some slack.
36.  Take some time to just be by myself.
37. Take a nap in my hammock.
38. Go to the drive-in. 
39. Learn something new.
40. Reconnect with friends.
41. Blog.  A lot.
42. Start learning how to take pictures.  Learn from Geoff, from books, and online.
43. Take at least one good picture.
44. Make some suntea (stealing it from my mom equals making it myself)
45. Find a new restaurant to try.
46.  Have beers on a patio.
47. Build something amazing for Sawyer.  Something from Pinterest maybe?
48. Take the kids to the park.  A lot.  Like, all the time, if they want.
49.  Stop sweating the OT.  Leave it be.
50. Get a pedicure.

So, there it is.  I will try and update you, as I make shit happen.  Wish me luck! 

Rosie N. Grey
The N stands for "new summer adventures".

Tuesday, June 18, 2013

Later vs Now

For the last couple of days, I have been noticing a big difference between the way that I and my husband think.   It is glaring and now that I have noticed it, I can't NOT notice it.

He is a "later" person.   I am a "now" person.
He will smile.
Later.

 When I want to do something, or make a decision, I want to start.  Now.  Right now.  I don't want to waste another second, I want to get my hands dirty, I want to get it done.  If I decide that I want to go somewhere, I want to go today.  If I am going to go out for dinner, then I want to do it that night. 

I know that it isn't always feasible to be a now person.  There are challenges- money, previous plans, other people's schedules, and just the simple logistics of starting and finishing projects.  But I love the rush, the excitement that I feel when I get an idea or an urge and I am able to act on it right away. 

Geoff is a later person.  As in "someday, but not right now".  I will tell him that I want to do something, or go somewhere, and he will agree that it is a good idea.  When I ask him to pack it up and get ready to go,  he usually gets that confused look on his face, as he begins to understand that yes, I did mean today.  The excuses usually start.  Sometimes, he goes with it. 

It causes conflict in lots of different ways.  I will ask him to do something.  I mean now.  He does it later.  I get pissed.  He is confused (seeing a trend here?  Geoff doesn't put as much though into these things as I do.) 


So, how do I reconcile this?  How do I make this work?  We will be married for 15 years this year.  You would think that I had figured this out by now.  I am trying to be a bit more flexible in my expectations.  But I end up doing a lot of stuff myself.  I will ask him to make the kids breakfast.  When 20 minutes has passed and he still hasn't done it, I do it myself.  To tell the truth, if he doesn't jump in the first minute or so, I usually do it myself.  Maybe that makes it easier for him to continue to a "later" person.   Usually it makes it easier for me to continue to be a "now" person.  

I am trying to turn my kids into now people too.  Not only do I want them to jump and do what I want them to do, the minute I ask them to do it :), but I want them to live with this kind of excitement.  I want them to feel what it's like to have the flash of brilliance, and that flutter in your belly.  I want them to have the drive to start- not just start but finish! 

There is something I am struggling with.  Their "nows".  The "let's go to the park" and "let's paint!" and "let's play hopscotch".  When their "nows" conflict with mine.   I find myself saying no, not now, later.  I want them to be nows.  I am forcing them to be laters.   That makes me feel like a bad mom.  I need to find a way to fix this.  Now.  Not later.

Rosie N. Grey
The N stands for "now".

Friday, June 14, 2013

Soundtrack to Surgery, Success and Second Chances

Just in case you were wondering...here is the soundtrack that you all built for us.

Thank you!

- Horrorpops- Undefeated (posted by Tickie)
- Lynrd Skynrd- Gimme 3 Steps (posted by Lynn)
- Van Morrison- Into the Mystic (posted by Lynn)
- Anne Murray- Snowbird (posted by Teresa)
- One Republic- Good Life (posted by Christina)
- Monster Mash (posted by Joni)
- Happy Happy Joy Joy (posted by Barb F)
- Jeff Buckley- Hallelujah (posted by Teresa)
- Survivor- Eye of the Tiger (posted by Holly)
- Flogging Molly- Saints and Sinners (posted by John)
- Move It from Madagascar (posted by my mom, Donna)
- Phil Collins- You'll be in my Heart (posted by Aunt Shelia)
- Alexisonfire- Boiled Frogs (posted by John)
- Herman's Hermits- I'm Henry the 8th (posted by Tracey)
- Macklemore-Thrift Shop (posted by Tracey)
- Journey- Don't Stop Believing (posted by Val)
- Brand New Pair of Roller Skates (posted by Tracey)
- Puscifer- Humbling River (posted by John)
- Bob Marley- Three Little Birds (posted by Teresa)
- Adam Warock- I will do Science to it (posted by Joel)
- Macklemore- Can't Hold Us (posted by Joel)
- Just Keep Swimming from Finding Nemo (posted by Carrie)
- Florence and The Machine- Dog Days (posted by Michelle)
- Carl Douglas- Kung Fu Fighting (posted by Tickie)
- U2- Beautiful Day (posted by Deb)
- Bruce Springsteen- Born to Run (posted by Deb)
- This is Halloween from Nightmare before Christmas (posted by Barb F)
- Classified- Inner Ninja (posted by Val)
- See my Vest from the Simpsons (posted by Bill)
- Kelly Clarkson- Stronger (posted by Bill)
- Barbara Streisand- If I Could (posted by Aunt Gay)
- They Might be Giants- Birdhouse in your Soul (posted by Claire)
- Josh Groban- You are Loved (posted by Melinda)
- The Beatles- It's Getting Better all the Time (posted by Aunt Michelle)
- John Lennon- Beautiful Boy (posted by Aunt Michelle)
- Kanye- Stronger (posted by Holly)
- Kermit the Frog-Rainbow Connection (posted by Holly)

And dedicated especially to Geoff from Lynn-


If I missed anyone, please let me know.  Facebook is funny, and can be a jerk sometimes.

There were a few that I would add.

- Prince- Let's Go Crazy (heard this one in the car, first thing, after the appointment with his cardiologist that cleared him for the next year.  Oh yeah.)
- Bruce Springsteen- Wrecking Ball (heard this one on the day before his surgery, when I was running around getting stuff ready.  It wrecked me, but it inspired me. It was my anthem.)
- Katy Perry- Firework (I can't listen to this song without thinking about Sebastian.  It was written, just for him.)

Thank you to everyone that put their heart and soul into picking a song for me and Bastian and Geoff.  I am having Geoff burn them to a disk for me, so that my soundtrack can go everywhere with me.

Rosie N. Grey
The N stands for "new soundtracks".

Truth time

ok...I'm back..or at least I am going to try to be. 

I have fallen out of the blogging habit.  Partly because I wanted to, partly because I needed to, and partly because I am lazy.

But I have missed it.  So I am going to try harder. 

I am inspired by some other blogs I read.  Every day, there is a new post, even just something little, or pictures or something.  So, I am going to try and set aside time every weekday (weekends are optional!) to blog something.  Anything.  Good luck to me!

As you know from my last post, Sebastian has had and survived (not just survived, excelled at, crushed, succeeded!!) his surgery.  Life is slowly returning to our version of normal. Sure there are some changes.  Nothing we can't handle.

But now, as we get back to normal, I have been forced to take a look at my life, and where I let it get to.  Since we found out that Sebastian was going to need surgery (end of November/beginning of December ish) I have really, REALLY let myself go.  I have been pretty aware of it, I have seen it happening, but I did very little to stop its progress.  At times, I willingly gave into it.  I gorged myself, I stopped exercising.  I ate whenever and whatever I wanted.  I would feel sick, and I simply didn't care. 

At the time, I really didn't associate it with Sebastian, and I am quite sure his situation isn't 100% of the cause of it. But the week after he came home, I got on the scale. Holy shit.  I don't want to type it, but I will.  I had gained back 40 lbs.  40.  Wow.  I had been down 70, and now more than half of it had come back. 

I knew that Sebastian was doing well, and was going to be with us for a long time, so I decided that I should probably stick around too. I got serious that day, and since then, about 4 weeks, I have dropped almost 20lbs.  Thank goodness.  I still have a long way to go, but it would be nice to at least get back to where I was before.

Two weeks ago, I started feeling really sick.  I had swollen glands, couldn't turn my head.  I could literally see the glands in my neck, under the skin.  They stuck out like Frankenstein's bolts.  My body hurt, I had a fever.  I went to the clinic, they gave me antibiotics for strep.  I have had that before- it hurts like hell for about 2 days, and then I start to get better.  I know that I have 2 days of not being able to swallow, of crying when I have to force down the pills.

But by day 6, when I am still feeling that way, and it's not getting better at all, I know something is wrong.  Back to the doctor I go.  And now I know.  Not strep, mono.  I didn't even get to kiss anyone to get it.

It's a week later and I feel a bit better.  I can eat and drink again, although lots of times, I'm not really hungry.  I am super tired though, and can probably sleep about 15 hours a day.  I take naps as often as I can, and try to go to bed early.  I don't kiss my kids or Geoff, for fear of giving it to them.  My mom basically took care of my kids for a week straight, so that I could sleep and I didn't pass it on.  (She's a rockstar, that mom of mine.)

And I know, I have no one to blame but myself.  Stress and lack of care did this to me.  I stopped looking after myself, a long time ago, and I am paying for it now.  I know I have to change, this is my wake up call.

I attended 2 funeral visitations last week, for different people.  Both were young, too young to be gone.  Another call from the universe, telling me to get my ass in gear.

I am listening to the universe.  I am trying to let in light and life.  To live in the moment.  To make good choices.  To cut out the bad (food, habits, energy, people, attitude...whatever!) and find more of the good.  I am looking for beauty, doing what I love.   

Wish me luck. I will keep you posted.

Rosie N. Grey
The N stands for "now".