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

Thursday, December 29, 2011

New Year

So, I am thinking about the new year. 

My sister-in-law posted in her blog about an interesting concept, where you don't take on new projects or resolutions, but let go of the old, the tiresome, by burning it and sending it into the ashes.  I am intrigued by this, but not sure if I am ready for that. 

I see this new year as an opportunity.  There is so much I need to change, that I need to do, that I want to do.   

I have been living, for quite some time now, day to day.  I have been making no plans, other than how this month's bills will be paid, and what I can do to help make today and tomorrow good and better for my family.  I go to work, but have no pleasure in it.  I get through my day- exactly that, I get through it.  I don't live it, I don't revel in it.  And I need that to stop.

I know I have to start planning.  I need to figure out what I want to do.  I can't keep going the way I am.  I don't mean that I am going to quit my job, far from it.  I just need to know what I am working towards.  Where do I want to be?  What do I want to do?  Accenture is a part of my life, for now, and for the next few years, at least.  Maybe even forever.  But it can't be the soul of my existance.  It needs to be the means to an end, not the end itself.

So, what do I want?  I want to knit.  I want to create.  I am going to create an Etsy account, and try to sell- first the Cracked Lens stuff, then my own stuff.  I have a million ideas, and I would like to be able to enact on them.  We are going to take pictures of kids and families.  I have ideas for networking, and promoting. 

I want to move.  I love my house, but I really want a farm.  Just a small, hobby farm.  I know that is years and years away, but I want to start planning.  I want something to look forward to.  But I don't want to be holding on for a dream- I need to start making my home now reflect what I want.   

I want to move towards financial independance.  I want to reduce my debts.  There really isn't much, other than a credit card and my mortgage.  It's the mortgage.  I really haven't ever given much thought to paying down my mortgage faster.  I know, I know, that sounds ridiculous, but it's true.  I have basically accepted that it was something I was going to be paying from now until whenever.  But I think and think and think...what if I went crazy and really really tried to get rid of it?  Could I have it paid off in 10 years?  7 years?  5 years??  That one is hard, since it would require buy in from Geoff and a complete shift in how I think and spend my money.  But I am thinking about it.

I want to embrace nature.  I want to spend my time outdoors.  I want my kids to do the same.  I want my children to be able name trees and flowers and animals and birds.  I got a book from Holly for Christmas, that I had asked for, "Above all, be kind."  In the book, she speaks of building reverence in your children.  When a child learns and feels reverence for nature and the Earth, they have no other choice than to move towards a respect for nature, and through that respect, make good, kind, responsible choices.  I want, I need to start building that reverence. 

I need to re-connect.  For quite some time now, I have felt disconnected- from my work, from the world, from my friends.   I have trouble understanding other people's lives, just as I am sure they have trouble understanding mine.  I know I probably seem strange and my priorities are very different from theirs.  I feel like we sometimes move in completely different worlds.  I have trouble relating, and sometimes, I am just tired and I don't want to try.
But these are my issues, not theirs.  I love them all, and what they bring to my life.  I would be lost without them.  I need to make sure that they know that.  I need to balance that part of my life better.  For those of you reading this- I am sorry.  I will do better.  Be patient with me, if you can.  :)

So, not exactly resolutions.  But I think these are things that need to happen, to keep me human.  I need to have meaning in my life.  Life is not money.  Life is not my job.  I need to remember that, I need to find passion and belief and drive and harmony and love.  What makes life worth living?  I am figuring that out, moving towards it with all the strength of my conviction. 
What better time to do that, then the new year. :)

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


I was driving the other night, by myself, down a dark country road.  I had plugged in a random CD that was laying on the floor of the van.  Most of the songs were fine- it was a CD that Geoff had created a couple of years ago- and I was able to sing along with most of them.  And then this song came on. 

I can't listen to this song without my eyes welling up.  Every time.

It makes me think of my boy, of Sebastian.  It makes me think of things like forever and ever.  I remember the way his eyes look when we connect.  I know how his eyes wrinkle when he smiles.  I can close my own eyes, at any time, and see his face.  He is my boy, my son, my heart and soul.  My heart aches when I think of our life together, because I know that we will be linked and together for the rest of our lives.  Sawyer will have her own life, she will have a family or not, but Bastian...well, he's different. 

This song brings an ache to my heart and my soul.  It brings tears to my eyes.  I just felt like sharing it with all of you. 

Rosie N. Grey
The N stands for " 'nother reason to love him."

Wednesday, December 28, 2011

Merry Christmas!

I have been meaning to post for the last couple of days, but I have been enjoying a time of peace and serenity lately that has been sorely lacking.  I am off work this week, and have been doing things that I want to do, rather than what I need or have to do.  It is a refreshing break.

The holidays here were wonderful, I am pleased to say. 

Friday, December 23- my last day of work until the new year.  It went relatively smoothly, and I got much of what I wanted to get done, done.  My boss (the one I am not fond of) irritated me a bit, with a bunch of last minute demands, and the frequent check ins, to see how far I had come, because he wanted to be logged off at a "reasonable time."  So, he logged off at 230ish, and I worked until 530.  Not fair, but what are you gonna do? 
I made a major (in my mind) mistake, when I forgot to have gifts ready for my son's class at school.  I had gift cards for the bus drivers, made a donation in the teacher's name to the Kid's Help Phone, but completely forgot to do something for his classmates.  I managed to save it, by getting a cookie bouquet and delivering it to the school.  There were enough cookies for each kid to get one, plus left overs for the EAs. 

Christmas eve was a little crazy, with running out to the grocery store for last minute meal "must haves", to the beer store, and to Chapters, for last minute gifts.  To be honest, I dreaded going, but every store I went to was well prepared and had lots of cashiers available.  It was relatively painless.
Geoff spent the day at home, doing last minute tidying, and started wrapping presents.  We hadn't wrapped anything- NOTHING- prior to that point.  So, Geoff wrapped for about 10 hours.  I helped towards the end, and we got it all done.

I stopped by my mother-in-law's, for some help in finishing one of Sebastian's Christmas presents.  What was supposed to be a quick pop-in turned into a 2 and a half hour visit.  We had some great talks, about different things, and we both seemed to be a little more settled and centred afterwards.

When I got home again, I started prepping for the next day.  We always have breakfast on Christmas morning, with my mom and dad and brother, and this year, we were hosting the Rousseau's for dinner.  I prep as much as I can ahead of time, in order to minimize my time in the kitchen on Christmas.  I made 2 quiches, cooked bacon, and peeled potatoes.  Geoff kept wrapping.

In the middle of this, we got a phone call from my nephew, Roan.  He wanted us to come over RIGHT NOW. 

Holly had the idea to release balloons in honour of her father.  She had bought helium filled balloons, and was originally planning on doing it before dinner on Christmas.  However, the store said that they couldn't guarantee the balloons for anything over 12 hours, so we ended up releasing them on Christmas Eve.  Sawyer really liked letting the balloons go, and watching them float away.

Later that evening, my mom, Kathy and I went to Christmas Eve service at a United Church here in the Falls.  It is the first Christmas Eve service I had attended in probably 15-16 years.  It was very nice, and I am really glad I went.  I took communion and sang the hymns.  It was a candlelight service, and that part is always lovely.  It was only an hour, but well worth it.  I will go back again next year.  It was nice that my mom and mother-in-law came too.  I think we were all looking for a little something different, it means a lot that we were able to find it all together.

Before I had left for church, the kids and I set out Christmas cookies and chocolate milk for Santa and  carrots to the Christmas Pony.  All day, we would log into Facebook and track Santa on NORAD.  Both kids were super excited and psyched up for the holiday.  When I got home from church, both kids were in bed and asleep.  We made all the necessary preparations- made sure there was a landing strip for Santa on the roof, made sure the stockings were hung by the chimney with care.  Earlier in the day, Sawyer had had a minor panic attack at the thought of Santa coming in her house.  So I called Santa and the Christmas pony right away, and told them that they weren't welcome to come in the house.  They had to use their magic to make the presents fly down the chimney.  They graciously agreed, and all was well.

About 2am, Sebastian was awake.  When I heard him humming and went to check on him, he told me he was too excited about Santa for sleep.  He had asked Santa for pictures of the Nick Jr. Animals.  He had written a letter and had specifically asked Santa is he was bringing the pictures.  And now, he was so, so, so excited about what Santa was bringing.  He ended up coming to my bed and sleeping with us. 

So, comes the morning.  We ended up waking Sawyer up around 8am.  We headed to the living room, and looked at the plate of cookies and milk.  The kids lost it when they saw that it was all gone.  We went to the basement and the magic began. 

There were stockings full of fun, and gifts that only Santa could have brought.  Sebastian got his Nick Jr picture book, and his eyes got so big and full.  It made me well up and I was so happy.  It made my day.  Sawyer got her guitar with a kitty on it.  She serenaded Geoff with Twinkle, Twinkle later in the day.  Geoff got me a great container for all my knitting, and 2 buffet servers, that came in super handy for breakfast and dinner.  I got lots of books and some beautiful pictures of the kids.  I got Geoff Satellite Radio and some books.  The kids and I had made Geoff a gift, but I will post about that later.

My mom and dad and Adam came for breakfast.  The kids got lots of new movies and some beautiful shirts and sweaters.  They got me a new comforter set for my bed, and Geoff got a panini grill.  We had made my dad a birdhouse, that Sawyer painted and made a set of gazing balls for my mom (I will post pictures later).  It was a nice visit, as always.  We eat quiche and bacon and eggs and chat and chill.  What a nice way to start Christmas.

I cooked through the afternoon.  My turkey was enormous and I couldn't get the cover down on the roaster.  I was getting a little worried that it wouldn't cook, but it did, and it was delicious.  I made mashed potatoes, gravy, corn and stuffing.  Geoff's mom brought broccoli and cauliflower, sweet potatoes and buns.  Holly brought salad and Dawn made a scrumdilliumptious pie.  The house smelled like home cooking and wonderful.  The smell of turkey makes me happy.

When everyone came over, we did our presents first.  Sebastian was super engaged, and wanted to keep opening presents.  He did great and was very into everything he got.  Sawyer sat with Auntie Dawn and was a gracious little girl, loving her new dress up clothes, her Strawberry Shortcake and Ponies.  Everyone seemed to love their gifts and it was lovely and mellow.

We sat down shortly after to dinner.  Everything was good and I hope everyone had enough to eat.  Geoff and I had gotten a small bottle of Coke for everyone, including the kids, as a toast to Kit.  We ate, drank and were merry.

Yes, Kit was an undercurrent in everything we did.  And I think  because of that, everyone had a good day.  It's what he would have wanted and we honoured him with laughter and love.

We had a full day and the kids were more than ready for bed.  They each crashed hard when the time came.  They were lovely and wonderful, and I love them all the more for it.

Rosie N. Grey
The N stands for "nice and lovely holiday".

Tuesday, December 20, 2011


To tie into my attempt at a homemade Christmas, I went flower arranging tonight.  Yeah me! 

I love having fresh flowers in the house, but unless I cut them out of my own garden, I very rarely have them.  They just aren't on the radar.

But a girl at work has been arranging outings as part of our Women's Network.  We go to the Watering Can, where they have instructional classes, and you get to build a flower arrangement.  They did a beautiful sunflower one for Thanksgiving, but I wasn't able to attend.  I decided to do the Christmas one (it's actually not very Christmas-y at all, more wintery.)

Today, the girl arranging it had a bunch of people drop out at the last minute.  She was trying to find some people to fill in, and bring the number back up to the minimum she needs to have a class.  For some reason, it occured to me to ask my mother-in-law, Kathy.

Today is Kit's birthday.  As Geoff described it, it's been "a weird day, but a good day."  What more could you hope for, really?  I thought that Kathy might like a bit of a distraction, plus I hadn't seen much of her lately, so I thought it would be nice to spend an evening together, doing something fun.  I didn't know if flower arranging was her thing or not, so I was a little surprised, but pleased when she said yes.  Even with the incredibly short notice.

We headed out to Vineland around 6:30.  The directions weren't great, and took us down a whole lot of back roads, in the dark.  But we made it in time, and got settled. 

It took us almost 2 hours, and some false starts but we both managed to make some pretty spectacular (if I do say so myself) floral arrangements.  They have birch logs (my favorite tree) and orchids and mums.  Lots of different pine. Rustic stars and some fruit, and voila.   Art. 

The class was alot of fun, and next time, I am bringing my mom along too.  I think she would really like it as well. 

Anyway, it was just really nice to have a night dedicated to creating beautiful things.  I think I need more of that in my life.

Thanks, Kathy, for a great time.

Rosie N. Grey
The N stands for nicely done."

More special pictures

Until I create my blog for the photos, mine will have to substitute in.  I wanted to record some thoughts on our shoot on Sunday, before they fly out of my brain entirely.

So, as I mentioned in my previous post, we are doing pictures of special needs kids and their families.  So far, it's been all autism, but we are open to everything.  The one question I ask the mom's before we start shooting is if there is anything about their kids that they really want us to capture.  Their eyes, their smile, their hands...whatever.  Once Geoff gets a hold of a macro lens, we will really be able to go to town on that.  But until then, we do our best.  I firmly believe that parents have a favorite feature on their kids, no matter what age.  (BTW, for Sawyer, it's her eyes and her hair, for Bastian, it's his eyes and his elf ear.)  I would love to be able to capture that.  I am especially thinking of kids that might have a physical disability.  While parents love their kids no matter what they look like, I would love to be able to hand mom a beautiful picture of her son's toes in the sand, or the nape of her daughter's neck, especially if the beauty in their face isn't traditional, or readily apparent to the rest of us ignorant fools. :)

So, anyway...Sunday.  We had a family of 4, with a son on the spectrum and a NT daughter.  They hadn't had a family photo done since the daughter was a baby.  She, of course, was gorgeous and a total ham.  She loved the camera and the camera loved her. 
We went to Table Rock House, down by Niagara Falls.  It was our first experience doing photos in an outside environment.  I was surprised to find how different it was. 
I really struggled trying to connect with the son.  There were so many distractions, so much going on around him.  I tried to reach out a couple of times, but he very neatly avoided me and skirted away.  I think we might have linked a bit later, when I learned that side by side was better than face on.  We walked together a little bit, and I mentioned that orange M&Ms are my favorite.  He had just gotten a stuffed orange M&M from a store.  After a minute or so, he repeated orange back to me.  A couple of times.  IT wasn't a smile or a hug, but it was a connection.  I'll take it. :)

He reminded me so much of my son.  The forced, fake smiles, the repeating of phrases, the need to have and show his "things".  Very similar.  I think that made it a bit harder on me when I didn't seem to be able to connect.

We had to employ a couple of different strategies in this shoot.  We did some posed shots, but because it wasn't their environment, it was very difficult to capture the candids that I love.  When we did encourage him to explore an area, to try and get some natural shots of smiles and fun, we inadvertently triggered a meltdown.  I realized then, it wasn't so much that we could avoid those, but it was how we would respond and handle these that would make or break us.  As dad worked with son, to try and calm him, Geoff did some fashion model photos with the daughter and I chatted with mom.  That's when I told her, her son was just like mine.  That I was shocked by the similarities.  I reassured her that Geoff had gotten some good shots already.  That it was working and was worth it.  I said we could break as long as she wanted, and whenever she wanted to call it a day, that was a-ok with us.  But we would keep going if she would.

She smiled then, and she was glad we were there.  She said it always felt good to have someone that got it.  And I did.  Totally.

After that, we took a couple more photos, outside.  Geoff really wanted to be able to take advantage of the ice and the Falls, but kiddo was done.  Completely.  The hard part for Geoff is turning off what he wants, and working within that really tight framework of when our autistic kids are willing to work with us.

So, what have we learned?  A lot, actually.
1. We book for an hour and a half.  We rarely use it, but it's good to have.
2. I prefer a controlled environment, like a house.  I like being where the kids are comfy and at home.  But the challenge is good, being out in the world.
3. We have a very limited timeframe when we can work with the kids.  The sweet spot is about 10 or 15 minutes after we start, until about the half hour to 45 minute mark. Not really long, when you think about it.   Before or after, we are lucky to get anything with them at all.
4. It's not about me controlling the environment.  It is great to work with the kids and connect.  But it is about respecting the parents, knowing that they really do know best.  Letting them do what they do, and just being there to capture the moment. 
5. The parents are more nervous than I am.  Maybe.  But it's close. It's my job to make them feel better.  And confident. 

I think we are going to keep learning.  I think we are going to keep going.  :)  I'm even a little excited.

Rosie N. Grey
The N stands for "new stuff to learn."

Saturday, December 17, 2011

Special Pictures

Geoff and I have started an experiment.

As you know, we take pictures.  Well, Geoff takes pictures, and I plan them.  Actually, less and less, I plan them, as Geoff becomes more instinctive about his photos and their composition. 

Up until now, we have taken horror photos.  But after an abysmal year, and nothing but discouragement, we have changed focus. 

It began last year.  We had brought Sebastian and Sawyer into the Zehrs portrait studio for their Christmas photo.  Even though we ended up with nice pictures, it was an exhausting exercise.  I was literally drenched with sweat by the time it was over.  Sebastian didn't want to sit.  Neither did Sawyer.  They wouldn't look at the camera.  When I was finally able to get them both looking and smiling, the photographer wouldn't be ready and couldn't get the photo, or simply wouldn't see the opportunity.  Finally I said to Geoff- "You are a photographer.  Why the fuck are we doing this?"

Yes, Sebastian has autism.  He is very mild, compared to some.  He is mostly able to go with the flow.  But even still, the whole studio environment, and the stress of having paid for something, and not knowing whether I was going to end up with 1 good shot, let along the 3 I am supposed to get- I just couldn't do it again.

The past year has been trying and full of distractions, of course.  Finally, in mid November, after months of talking to Geoff about it, and not really knowing whether he was into it or not, I started to put out feelers. 

See, my idea was to specialize in taking photos of special needs kids.  To offer a safe and secure place for people with the same anxieties that I have.  To use my knowledge of what it is like to be a mom to a special need kid, to make the experience better for other moms.  I thought there would be some interest in that.

So, I posted on the Autism Ontario Facebook page.  If anyone was interested, we wanted to use them as guinea pigs, as we develop our potential business model.  If they were willing, we were willing to do it on the cheap.  I posted this, and waited.

And waited and waited and waited.

Finally, about 2 weeks later, after I had pretty much decided that it was a no-go for this Christmas, I got a hit.  Then another, and another.  Six in all. 

Six families, with at least one autistic child.  Some of them have never had a family portrait.  Some haven't had pictures taken of their children for years. 
I sent them the details of our plan.  I sent them the price.  Some of them didn't respond.  I get it.  That's cool.
But 3 of them did.  :) We were in business.

We met the first family last weekend.  Three kids, 2 on the spectrum.  Never had a family portrait taken.  We sat and talked and let the kids get used to us.  Geoff started slow, clicking away, getting some great candid shots.  The mom was so nervous about her basement.  It was lovely, but smallish, and had areas that wasn't finished.  My job was to work with her and the kids, to put them at ease and to make this fun for them.  Something that normally was anxious and nervous, needed to be relaxed and good.  I assured her we could work with the background, blur it out.  As her children cried and fought, I worked with the other kids, having fun and laughing, until the others would come around.  I asked their permission before we did anything.  I touched them if they were ok with it.  I looked them in the eye.  I talked to them about what their favorite things were.  Geoff took pictures of their toys and their funny faces.  We worked around the tears and the tantrums.  We never judged, and we smiled and reassured. 

When we left, the kids hugged me.  The oldest girl drew me pictures and wrote down all their names, so I wouldn't forget them.  The boy (who is on the spectrum) hugged me, and asked to come home with us.  His mom messaged me later and said he asked when his "other" parents were coming back to visit. 

We did exactly what I wanted to do.  We connected with a family, particularly with the children.  We took some great pictures.  And, I hope, we gave the family a great experience.

Today, we did it again.   This time it was 6 kids.  At least one on the spectrum.  I went in with no idea about how we were going to rustle 6 kids together.  No idea. 
But mom rules that house, and everyone listens when she speaks.  And the kids loved us, again.  They love Geoff's camera and climb all over him to see the pictures.  I talk about spaghetti-ohs and letters to Santa and Annie the musical.  I tell the girls how pretty they are (because they are) and the boys how cool their hair is (because it is).  Everything I say and do is 100% sincere.  And again, my autism kids- I treat them with the utmost respect.  I ask permission.  I look them in the face.  I hug them if it's ok, and if it's not, I touch their hands.  We look at their videos and games.  And eventually, eventually, I get them to smile.  And Geoff is snapping, snapping, snapping the whole time.  If we are lucky, he catches it.  If we aren't, then we try again.  And again.

Tomorrow, we have our 3rd shoot.  After that, we are going to create a blog, and a Facebook page (I think).  We are going to see if we can do this more often.  We are going to see if this is something viable, sustainable.

The only downside so far, is the energy hangover I get afterwards.  Being around all that chaotic, autistic energy drains me.  I am used to Sebastian, our energies mesh 100%.  But these new kids, they buzz and vibrate all around me.  The air practically crackles with the new energy.  They feed it into me, and I take it.  I feed my energy back- calm, confident, positive.  They seem to feel it, at least a little.  We give and take, and when I leave, I bring that with me.  And by the time I am home, my head aches and I need a nap.  But I can live with that.  Totally.

So, wish us luck.  This new adventure should be fun. 

Rosie N. Grey
The N stands for New adventure.

Holidays and Happiness

The holidays are well and truly upon us.

With everything that is going on, I have made a very conscious decision to try and be happy during this season.  I am trying to focus on what is important; family, friends, peace, happiness.  Some days, I have to remind myself constantly.  Some days, it just comes and stays.  Those are the really good days.

I have been thinking and reassessing my priorities.  And I am trying to reflect a lot of what I am feeling in my seasonal celebrations.  I am handmaking some of my gifts this year, for those that would be ok with that.  I know not everyone is.  Some people are cool with the slightly imperfect products of my imaginings, other people prefer gift cards.  :) To each his own.  I am trying to respect that.

I have been searching for things to make, and especially things that the kids can help me make.  I have found a few things, and I am hoping that over the coming year, I can build on my skills.  Obviously, because some of the recipients are readers of this blog, I can't talk about specifics, but I promise to post pictures and details after Christmas.

I am also not stressing myself out about gifts.  Money is tight this year, no question.  Normally, I would be very stressed- how do I get tons of gifts for the kids and for Geoff and everyone else.  But this year, I am being realistic.  The kids are getting a couple of gifts each.  That's it.  I know what my kids like, and I am being honest about the fact that buying, just for the sake of buying does no one any favours.  I get grumpy, when all those fantastic Christmas gifts are January's clutter.  We have been pretty good about keeping the kids' rooms clean and reducing the clutter, and I want that to continue. 
I also want to try and put the brakes on any sense of crazy entitlement I might be feeding into my kids.  I don't want them to think that Christmas equals a gift free-for-all.  I want them to know that a Christmas gift is a special, almost magical thing.  It is about wanting that one thing, that ONE thing, that you think about and dream about.  That you care enough about that you write a letter to Santa.  That you are dying to snoop for.  That when you open that gift, Christmas morning, you KNOW that Santa is real.  That he heard you, that he made this gift just for you.   That when you are 10, 20, 30 years old, you remember what it felt like to open that present. 

That's what I want for my kids.  And I don't think I will get that by buying them half a catalogue.  I will try this way, and see.  Wish me luck.

Of course, we are missing Kit.  All the time.  His birthday is this week, and then there is Christmas.  I think Geoff is focusing on the kids and being a dad, to take his mind and focus off his own dad.  We have talked about it, and I want to honour Kit by including anything and everything that Geoff remembers as part of his holidays as a kid.  As Geoff recalls different things, we will work them in, and do what we can.  Things like National Lampoon's Christmas Vacation.  Things like just talking about him, and talking to the kids about him.  Things like Geoff remembering his own Christmases.  And I think (but might be wrong) that Geoff is becoming (or forcing himself to become) more interested and invested into the traditions of our family.  I think his intent is to give his children that living legacy and the memories that they will carry with them into the future.  He wants them to be able to hear or see or smell something, that will instantly link them back to him and their own Christmases with him.  And when they grow and move into their own futures, those traditions will move on with them, carrying that link to him with them forever. 
So basically, I think Geoff is discovering the importance of traditions and rituals. He is understanding, maybe just a little, why they are so important to me.

Speaking of traditions, I may have established a new one with my friends.  Every year, we get together for a lunch and a yankee swap gift exchange.  This year, we made the addition of seeing a Christmas movie too, to help get us in the holiday spirit.  Not just any movie- White Christmas.
Now, White Christmas isn't my absolute favorite classic Christmas movie (that's "It's a Wonderful Life") but it definitely top 4.  And the theatre in NF was playing it last Sunday.
Michelle, Teresa, Dawn and I all went, with plans for lunch and prezzies afterwards.  Of course we had invited everyone, but for various reasons, we were the only 4 that could make it. 
We all got popcorn and snacks and settled in.  Michelle and Teresa had never seen it, so I was nervous that they would hate it.  But they didn't.  By the end of the movie, they both wanted to sing along (someone in the theatre was singing.  Normally that would irritate me, but this time, it was lovely).  Dawn and I both cried when they sang to the General.  I always do.
It was so wonderful, and Christmassy.  It made me happy and filled a little space in me.  I can't wait to do it again next year. 

Oh, and btw, the theatre is playing "To Kill a Mockingbird" in February.  Hope you can be there.

I know alot of you will roll your eyes at this next part, but I am mentioning it anyway.  Judge me all you like.  I don't mind.  :)
I have been teaching and talking to the kids about the Christmas Story.  Yes, the Jesus one.  I know, I know.

But I feel like it is important.  Like I said earlier, I want to instill a meaning to Christmas, over and above the fact that you get presents. 
I have a Fisher Price Nativity set that my mom bought the kids a couple of years ago.  Sebastian loved playing with it for years and now Sawyer does too.  So, we are talking about Mary, Joseph (or as Sawyer calls him Joho, or Josie) and baby Jesus.  We talk about how Jesus was born in a barn (as Geoff said, he sometimes believes that Sawyer was too).  We talk about the wise men, and how they brought presents (not toys!) to the baby Jesus.  That Jesus was special, and everyone wanted to know him and be near him.  How angels came and talked to sheppards to tell them that Jesus was born. 
We watched a cartoon about the Christmas Story.  I wish, wish, wish I had recorded or at least written down the questions that Sawyer had for me.  They were hilarious.  I laughed pretty much constantly.  But at the same time, I was so proud of her, for taking the story seriously enough that she wanted to know more.  She wanted to know why King Herrod didn't like the baby.  Why was King Herrod mean.  What was wrong with Mary's tummy (the baby was inside).  She wanted to know more about the star.  She was thrilled to see the angel, except that she thought it was a mermaid.  She was very sure that the donkey that carried Mary into Bethlehem was named Cheech.  And on and on it went. 
But Geoff won't talk about this stuff with me.  Sebastian was never really interested.  It was very fun to talk to Sawyer and see her excitement.  I know that to her, it's just a story.  I am thinking about taking her and Sebastian to the Christmas Eve candlelight service.  I used to love going, and I think that they might like it too. 

So, as we move into this last week before Christmas, I am moving through my preparations.  I am still working and work is very trying and exhausting.  I hate my boss (and I don't use that word lightly) so I struggle make my work day end when I leave work.  I have reduced my OT, since I don't really take home any extra money if I work over a certain amount (basically anything over 15 hours doesn't make a significant impact on my pay cheque) so I limit it to that amount. 
I have let work ruin times for me, times that should have been special and wonderful.  It took me a while, but I came to realize exactly that- I LET it ruin it.  So, I have decided not to let that happen.  Work is work.  Home is home.  Home is where I want to be.  Home is where I belong. 

Merry Christmas, everyone.

Rosie N. Grey
The N stands for "next up, Christmas!"

Adderall- Week 1

Ok, I am going to apologize to everyone for my delays in posting new blogs, and you all, because you think I am so wickedly awesome, are going to accept my apology.  And then we will move on, together.  Agreed?

So, Sebastian has a week of Adderall under his belt.  And yes, our life is getting better.

He is sleeping more, about 8 hours a night, with a small  break in the middle, usually around 1 or 2 am, and lasting anywhere from 45 min to a couple of hours.  We had an appointment with the pediatrician and he gave us a good hint on how to disperse his melatonin before bed, to help with keeping him asleep.  So, we are trying that and my fingers are crossed.

He has lost 2 lbs in a week, but seems to be getting his appetite back a little bit.  I know 2lbs doesn't seem like much, but for my thin little boy, it's more that I would like.

His obsessions don't seem much impacted, and some seem to be increasing.  His mouthing of his hands and the constant finger wrapping are increasing, and they have noticed this at school.

However, his eye contact is really, really improved.  He seems to be connecting more with his environment.  He has actively (and without being prompted) helped his sister with different things, like helping her with her hat and scarf, helping her take her t-shirt off at night, getting her a juice box out of the fridge.  Again, little things, but good things. 

His stutter is still there, but comes and goes.  When he is playing by himself, and unaware of being watched, his stutter is almost non-existant.  When he is excited, however, he still struggles.  We are finding tools and tricks to help him as much as we can.  My hope is that this too, will pass.

The other day, Sebastian came home from school, and as per usual, I asked him how his day was.  His typical response is "good".  When I ask him what he did, he usually says "I played."  Sometimes, he will tell me when he got in trouble, because he wasn't listening or couldn't focus. 
This time, though, he sat down and told me that his friends (he used that term, which was enough to break my heart all on it's own) had been laughing.  I was reading his journal, and it said that they had been looking at pictures from their Christmas party the day before.  So I asked, were they laughing at pictures from the party? 
He answered Yes, it was a picture of Dante and CarolAnne looking like this...and then made a funny face.  And he started laughing when he remembered.

Another first.  Telling me about his day.  Oh my heart.  :) 

I will keep you all up to date, with our new world of wonders.

Rosie N. Grey
The N stands for "New stuff, great stuff".

Thursday, December 8, 2011

The Adderall Diaries, Day 1-3

Geoff and I decided it was time to delve into the world of autism medications for our son.  We have tried everything- homeopathic and naturopathic medicine, OT, PT, ST, Swim therapy, Art Therapy, Music Therapy, Social Skills Groups, Special Needs Camps through Red Roof and AO, SN activities like gymnastics, play dates, swimming, etc.  We have private one on one therapy, had him in NPCC special need classes for 4 years, and therapy for a year before that.  We have been waitlisted (not once, but twice) for IBI/ABA services with Bethesda.  He is gluten free, casien free, beef free.  He eats as much organic as I can possibly afford.  I have piles and piles of clothing and aids- chewies, compression shirts, tactile and kinetic fidget toys, special adaptive pens, scissors, spoons, forks, knives, plates, glasses, paint brushes, bicycle pedals...and the list goes on and on and on...
And in all of this, Geoff and I have avoided medication like the plague.  We never even talked about it.  We have him on multiple supplements including 4 multivitamins a day, a calcium/magnisum supplement, omega 3 fishoil supplement (EPA/DHA), Brain Energy to stimulate him, digestive enzymes to help him process food more effieciently, a gluten supplement to allow him to eat gluten occasionally and still digest it.

And now, after all of this, after 8 years of trying everything we can think of and everything we read about, we decided (well, I did, and Geoff agreed) that it was time to try medications.

It's not that I am categorically opposed to meds.  I just think that the world in general (not just autistic kids) are medicated way more that is necessary, or than we should be.  The fact that little kids can become immunce to antibiotics because they have taken so many is crazy to me.  That I can look in someone's medicine cabinet (not that I do!!) and there are meds to fall asleep, to wake up, for headaches, for cramps, for back aches, for muscle aches, and so on and so on, just seems insane. I will sometimes let my kids burn a fever a little, because that is the body's way of eliminating an infection.  I let their noses run, becuase that is how the body eliminates what it doesn't need.  I rely on mentholatum rub on their chests and backs to ease a cough, and run a hot air humidifier to ease their sleep.  But, when it's bad, I will give them cough medicine to help them sleep.  I'm not an idiot.

When it comes to autism, alot of kids are put on meds automatically.  I honestly think we gave it a fair shot.  it was now time to try something new.

We met with the DR a couple of times.  He was pretty thorough when he asked me why I wanted Sebastian to try meds.  He wanted to make sure that we were doing it for the right reasons, and not because the school or someone had pressured us into it.  I knew my reasons, and told them to him straight and he agreed. 

We brought Sebastian back for a baseline work up, and he prescribed us with a low dose Adderall prescription.  The pharmacist said she had to order it in, she hadn't seen a dose so low.  That made me feel better. 

On Tuesday, we gave him his first dose.  That was the day of his school play.  We went to go see him, and the one EA said that she wanted to talk to us afterwards.  She brought him to us, after the play, and told us that earlier that day, he had an episode where he was poking himself with his pen and his marker, hard enough to leave marks.  He was shaking his hands and his arms and saying "make it stop!"  It was like he had pins and needles in his arms.  The EA gave him a pressure brushing and his "squishies" and he seemd to calm right down. 
I noticed that night that Sebastian's hands, which are always always cold, were actually warm.  I thought maybe the medication was increasing his blood flow, or his was just energized enough that he was increasing his own blood flow by just moving more.
He went to bed at 9 o'clock that night, after a night of lots and lots of chit chat, and tons and tons of eye contact.
He was up again at 11.
and up until 5am.

We finally got him back to bed about 5am, and he slept until 7am.  We kept him home from school, and gave him his second dose.
My mother, who had him much of the day, said that he was like Kermit on speed.  She said that it wasn't Sebastian at all.  I was trapped at work, and so worried about him, my manic boy, I didn't know what to do.  I had a thing for work at night, and I didn't know whether to go, what to do.  I was tired, and worried sick.  Geoff called me later, once Sebastian was home and said that he was fine.  Yes he was hyper, but still mainly ok.  I went to my work gathering, and made it home by 8:30.
My boy was still up, so I curled up with him,  I realized that when I did pressure massage on his hands, in particular, it really seemed to relax him.  I got him to go to sleep by 9. 

I decided to treat it like a newborn, sleep when he sleeps, so I can be awake when he is awake.  We both managed to sleep until 1am.  That's when he got up, and stayed up, mostly, until 5.  We laid back down and slept til 7ish.  Then he was well and truly up, and so was Sawyer.  That started my day.

Geoff and I decided it was time to call the DR, and at least find out if what we were seeing was normal.  On top of not sleeping, he had pretty much stopped eating, except for little nibbles here and there.  His obsessions seemed to be intensifiing, to the point that he was crying over a cut on his finger that he wanted "off".  That lasted for 20 minutes.  He scratched his knee hard enough he was bleeding, and was rubbing his lips and chapping them.  His stutter has gotten so bad, he can only get out maybe 1 in 3 words.
He is making crazy eye contact.  He says he feels great.  He is using phrases, just a few to start, that he hasn't used before.  When we can get him to focus, he is answering questions appropriately and in real depth. 

So, we wanted to know from the DR, whether what we were seeing was normal, whether it would go away, or at least lessen.  With two days in, is it possible for the impact to be this great, with this low of a dose?

We didn't give him today's dose.  He's asleep now, and I think he will stay asleep.  Fingers crossed.

The DR did call back eventually, and said that yes, this is all normal and to be expected.  That we should give it a week, and if it is stil happening with this intensity, then we need to look at changing dosages or medications.  We already have an appointment with the DR next week, just to check.

As always, when it comes to Sebastian, I worry that I am doing the right thing.  I hope I am.  I try to remember that nothing is permanent, and I can stop whenever I want.  I hope that this works out.  I hope that it helps.

I will keep you all up to date. Wish us luck!

Rosie N. Grey
The N stands for "new path to enlightenment".