A Year of My Yellow Apple

Today maks the first anniversary of my sitting down to the computer and, with great trepidation, starting this blog.  I felt in so many ways like a person talking to herself in public...certain that nobody would be listening, but still feeling the compunction to express myself.

Writing this has taken a lot of nerve for me, I feel like I am wearing my heart on my sleeve.  But I am glad I took the risk.  I have made some great connections with other "autism parents", and I do, very much feel less alone in our daily struggles, and celebrations.  I don't talk about all of our issues, but when I do share, I always feel like the listening ear is a kind one.

A lot has changed in a year.  In my original post, my fear over begininning homeschooling  almost had a pulse of its own.  Now, I see us as a homeschooling family, very much connected in a homeschooling community.  It still terrifies me, but it is doable, and we are doing it.  And yes, I am very, very proud to be doing  what is best for our child, even though it means a lot (like, a lot) of hard work, and many sacrifices.

I still feel like this blog is new, lots on it could be better.  I see all the fancy banners my fellow bloggers have, and I have no idea how they created them.  My little yellow apple pic is still slighty off centre, but I've decided that there is symbolism in that, so it's okay.  I have recieved some blog awards from fellow bloggers, but I have no idea how to "pick up" my award, so I haven't.  Sorry.  I'm not technologically gifted, so this is where my blog may fall a little short.  Oops.

But mostly, it's been a year fillled with great feedback from a lot of people.  So, to all of you who have taken the time to send me a note, either here on this blog, or through facebook, I offer you a heartfelt thanks.  All of your kind words have been a huge help to me in getting the courage to write these posts.  To other autism parents who have taken the time to tell me that they could relate through their own feelings and experiences, you have made me feel less alone.  And, to anyone who has told me that they look at kids' behaviours a little differently now if they see a child act up in public, a gigantic thank you to you, because that, is essence is the point of this blog - awareness.  Our kids aren't bad, they have struggles.  Thank you for recognizing that.

Now... here begins year 2 of My Yellow Apple.

A Boy's Eye View

It all started as a simple Kindergarten social studies outcome.  We had to examine landmarks in our community.  Well, our community being St. John's, I knew there'd be no lack of wonderful architecture.  What I didn't know was that Aiden would absolutely fall in love with the buildings...and subsequently many other world landmarks.

A common family activity for us now is to hop in the van, and drive around town, stopping at all of himself's favourite spots.  A number one favourite is the Basilica of St. John the Baptist, quickly followed by The Kirk, the Colonial Building, Government House and the Rooms.  It's actually a lovely way to spend an evening, all of us together, stopping by Tim Horton's on the way for some coffee, and going for a little drive around.

 The Basilica

The Kirk

Colonial Building

I can't help but think how cute it would be if he could give guided tours of the city, he knows EVERYWHERE by name...if it weren't for those pesky child labour laws. We've exhausted the local library's books on St. John's, and we're now moving on to Big Ben, Eifel Tower, Golden Gate Bridge....the list goes on and on.  I didn't realize that I would learn so much during homeschool!

It's so nice to see a new interest develop, and amazing to watch the amount of information that a bright little mind can suck up.  It's also been fun to watch the many drawings of these buildings that he's been pumping out, with an amazing eye for detail.  Not to mention the many renderings in Lego and wooden blocks.  Future artist? Future architect?  Future engineer?  Who knows.......the options are as limitless as this city is beautiful.

The Chicken and the Egg

School is officially out for summer now, and there are lots of parents out there welcoming the break from packing morning lunches and doing homework.  But I'm willing to bet there's also quite a large group of people who will be spending their summer with their stomachs in a great big knot, because their little ones will be walking through those big heavy doors in September...and that's not very far away anymore.  And they're terrified about how it's all going to work out.  I know, because that great big knot used to be in my stomach.

It really makes me wonder sometimes about the very nature and practise of schools, as they are.  I know that many, many people will disagree with some of my ideas here...but, they are my ideas, so feel free to disagree.  It's just that sometimes I feel like the whole school set up is a disaster waiting to happen for a growing number of kids.  It is designed for the child who can sit quietly, attend easily, follow directions, take part in large groups, handle the many transitions and routines of a school day, not to mention the noises/sounds of a school environment.  Let's face it, this set up is perfect for the majority of kids....but for kids with differences, it is just a disaster waiting to happen.

So, what do we do?  Well, let's take a quick look at what we're doing.  We're educating teachers about exceptionalities, and they are working really, really hard.  We're having alternate learning environments, and filling the school with "accomodations".  But, aren't we having to accomodate an awful lot?  Doesn't that indicate that the "typical" classroom setting, mode of teaching is perhaps not enough?  How many accomodations and exceptions do you have to make before you realize that perhaps the prototype just isn't working.

Imagine if you were selling cars.  For one driver, you had to shift the position of the steering wheel and the pedals.  For another the seats were too far back.  For another, the windshield needed a different tint.  For another you had to change the way the cylinders fired in the engine.  For your next customer, the radio was all wrong.  The next customer simply couldn't function with the interior carpeting....  How long would you go on selling cars before you came to realize that you just needed to shift models altogether????  Can it possibly be that all those drivers are the ones with the problems???  Just a thought.

This isn't an attack on teachers, special educators, administrators or student assistants.  I think that people want to do the best that they can.  But let's face it, it's hard to make every child successful in an environment that just is tooooooo much, plain and simple.  That doesn't mean we don't try...but it may be time to make a paradigm shift.  Instead of trying to make all these kids function in school...how about making schools function for kids????  Smaller class sizes, less sensory-overload, etc, etc.  The answers I do not know.  But I do feel that the kinds of mass instruction and cooperation just isn't possible for everyone. 

And what about our use of early intervention?  How much of it is spent preparing kids to survive a classroom and school, instead of working on key skills.  How much of all our work with children with special needs is spent trying to find ways to make them fit into unnatural situations.  I'm not saying they shouldn't be included...it's just that maybe it's not always the kids who need the fixing.  I truly believe that all kids should get from school what THEY need most, and that all kids deserve an education that works for them.  Not what's easiest to accomodate and to afford.

It's a classic chicken and egg...what came first: the behaivours needed for school success, or the school set up?

You don't know me but...

Today started out like many others, I had an early appointment for my son, just a regular check-in with our child development pediatrician.  Aiden was okay with this, as he had been assured that it was just a "talking appointment", and knew that nothing "would get done" to him.  Oh my.

We were waiting in the hospital waiting room, which, rather inconviently houses a large, run around play area, just right for getting your small child all wound up prior to their appointment.  Aiden was playing, and there was another young boy there, I woudn't guess that he was yet 3.  The little boy was very sweet and adorable, and obviously adored by his mom who followed him dotingly around the cursed play area.  Their closeness was so apparant, and really heartwarming.  It was, in a word, nice.

Next I saw the mom called over, and my heart sank when I saw which doctor had beckoned her.  It was the pediatrician who runs the autism screenings.  Accompanying her was an SLP, I know to be on the autism team.  Suddenly, my eyes were stinging.  I saw them smiling together, and talking quietly, and watched as they led the boy and his mother around the corner to a room I knew all too well.  The room where they run their observations. A room my husband and I had walked into ourselves, hand in hand with our own adorable little boy, who'd just turned 3.
 
I was caught off guard by my reaction...it was as if I had afforded this mom a sympathy I have never extended to myself.  When I was coming out of our appointment, she was leaving at the same time.  I felt such a kinship to this woman, with whom I'd only exchanged a few words...but I felt like I knew her.  Perhaps knew better than her what she might by facing.  I wanted so badly to go to her and comfort her..let her know that it would be okay, her boy would still be her boy.

But, sadly, I also felt a kind of pity  for her.  I felt like consoling her for all the things she was going to have to face.  For how overwhelming it all is in the beginning, and how really, its challenges never fade, they just have a way of jumping around, creating new hurdles, new obstacles... I wanted to tell her that people are going to be mean, that's she's going to have to get to know her stuff, because lots of decisions will have to be made...  she's going to have to grow a thick skin, thick enough for them both.

I wanted to help her freeze time, before they called her back and gave them her judgement.  "He does fall on the autism spectrum."  Once spoken...takes only a few seconds...but changes everything.
I wanted to say, You don't know me, but I know you.  You don't know me, but I'm your sister.  You don't know me, but we're part of the same club, you and I.  Welcome to our sub-culture.  Welcome to being an autism mom...  Hold on tight.

Of course, I never said any of these things, just gave my little boy's warm hand a bit of a tighter squeeze as we walked on past.  I didn't even make eye contact.

To the Movie Theatre....And Beyond!

Well, well, what do you know?  It would apear that the long awaited Toy Story 3 is due to hit theatres mid-month...after years of waiting.  Our little man is a big fan of movies 1 and 2, so, naturally he is excited to see the sequel.  Allow me to clarify, he's excited to see with when it comes out on DVD and can be watched from the comfort of our own couch, in our own living room.  The theatre....not so much.

Gentle readers, you may recall my last attempt at taking himself to a movie Up! In Smoke .  It didn't go so great.  But it has been almost a year since that not-so-successful movie outing, and if Toy Story 3 can't help us get beyond this block, nothing will. 

So, the nature of the debate around these parts is, whether to try to, not force, but push him into going.  One side of the argument being, if he doesn't want to go, big deal, don't go.  The other school of thought being, going to a movie together is a nice activity, something we can all do together, something you can do with friends.  It's perhaps a place worthy of getting comfortable with.  What to do...what to do....

Here's what I'm thinking....wait until the movie has been out about a week, so the theatres aren't packed anymore.  Perhaps I'll aim for a weekday morning, and fit this in someday before school let's out for summer, and the city is once again brimming with school aged children all week long.  Just like before, I'll pack enough sweets to get us through....and hope for the best.  Maybe we'll read through "Curious George goes to the Movies" and "If you take a Mouse to the Movies" a few times, to put some excitement into going to the cinemas....and hope for the best.

And if all else fails, you get a full refund if you leave within 20 minutes of the feature presetation.

It's the Little Things....

It's the little things that always get you...that always turn out to mean the most, to be loved the most, and even hurt the most.  Life's subtleties.  Kind of like when you perfectly plan Christmas, and it ends up being a last minute stocking stuffer that steals the show. 
Well, this week my absolute favourite coffee mug turned up handle-less.  In short: I Was Crushed.  Let me give some background...it wasn't just any old mug, it was my CBC Radio St. John's Morning Show mug...much loved, much treasured, and very, very, very hard to get.  It took me about 5 years to get my hands on that little beauty, I had admired one years ago, being a big CBC Radio fan (more on that later), and have been promised by no less than 3 people that they could easily get me one.  'No trouble', I was told. 'I know so-and-so all to pieces over there, I'll ask for one next time I see so-and-so.'  Fast forward, didn't ever pan out.  One day, after my pining for a mug, hubby told me I'd have to suck it up and do call-ins for contests like everyone else, and earn one.   He was right, once I got the idea of being given one out of my system, it only took me about 2 months to win one, granted I had to go on air and answer a question, but I did it.  Caller on line 1, that was me.
Every morning, without fail, I get up, put on a pot of coffee, flick the radio on to Jeff, Cecil and Nancy and sip from my precious mug, smug all the while.  It's like I was in on something, part of their routine, or rather, I guess they are a part of mine.  So, in the face of my broken mug, I persevered....and kept drinking from it anyway, sure it was hot to the hand, but I would overcome.
What does any of this have to do with parenting Asperger's Syndrome?  Actually, quite a lot.  When I am home now, full time, CBC Radio offers me the adult conversation I crave, it's one little part of myself I've managed to secure.  From the Morning Show, to Radio Noon, Vinyl Cafe, or my oh-so-treasured Q...I don't get to hear them all the time, but I do get to hear them a lot.  They make me feel involved and in touch with the world outside of my house.
And more importantly, parenting autism has taught me first and foremost, that if you want something, you have to ask for it.  Whether that be wait-listed services, or reasonable accomodations.  So in keeping with this theory, I sent along an email to the good folks at CBC Radio...and guess what? 
There's a new mug waiting for me at the front desk. 
Sure, I know it's just a mug, and if I hadn't have gotten a new one, I surely would have survived.  But like I said, it's the little things....

Notes from Home

I've got to say, I love being home with the kids.  Even on the days I think I'm going to collapse...especially the days I think I'm going to collapse.  That doesn't mean that it's easy, in fact, I found that working part time in the past gave me a break, a change of scenery, a distraction, and something else to focus on from time to time.  But I just know that this is where my true work lies for now, and even trying to pretend that I could step away from here, and focus on something else is just an impossibility for the time being.

It's just too hard to go to work, when you are already holding down a full time, tonnes of overtime, highly demanding position.

But it is haaaaaarddddd....like, really, really hard.  On really heavy "sensory seeking" days, I am full out all the time.  Even easy days are demanding, filled with the endless tasks of fetching juice, serving meals, wiping spills, making beds, and let's not forget the enormous task of homeschooling.  However, recognizing the enormity of the work load is not the same as resenting it.  And needing 15 minutes to yourself to prevent from overloading isn't he same as being ready to throw in the towel.  This is by far, the most difficult, and the most rewarding experience of my life.

When I flip through Aiden's kindergarten work, and I see how much he has learned, and how many skills he has developed, I'm not just proud of him, but of me too.  We have both worked really, really hard... and I think it's fair to say that we've both seen great results.  To know that I'm putting my skills and my strengths to work for my own boy is deeply gratifying.  It is worth the days where it's a battle to get him to focus, and it is worth the days when he just can't sit still, to see the net result of all the days he did manage, and all the work he has done.

He hasn't succeeded only because he has leanrned to fit the mold of schooling...although there has been a lot of that.  He's succeeding because schooling is also learning to wrap itself around him, and his own individualized needs and learning style. 

On the hard days, and there are hard days, I am glad to know it is me who is dealing with him.  And not just dealing with him, but helping him.  My patience is born from love, and my discipline always has his best interest at heart.  When he hasn't slept well, and that's pretty often, or if he is going through a real serious period of anxiety, I know that he has the support and love he needs with him, and together we can face the world.

I found it hard at first to feel the pull and desire of staying at home...the feminist in me was confused by the tug of my heartstrings.  But my particular strand of feminist thought believes in women having choices, and having the ability to choose what works best for them and their families.

Hooray for Creativity!

Let me just begin with an apology...if you are a Facebook friend of mine..I'm sure you already know that Aiden just participated in a Creativity Fair with our homeschool association...and you probably also know that his picture won for the Kindergarten / Grade One age level!!  And if you didn't already know this, you do now! His winning entry is to the right...it's a track crane for those of you who aren't as well versed in heavy equipment as I am.

Proud is not the word.  It's not just that he won a prize, he didn't even know he was entered into a contest, and is a little too young to be competitive, and that is just fine with me.  It's that he had a chance to shine, he participated in something that was truly up his alley, and hubby and I got to see and hear people praise his little efforts.  It felt good! 

We're always so proud of his creativity, and have worked hard to let him know he has a talent, and to encourage him to work on his drawings.  And winning wasn't important, but participating in an event that highlighted his own particilar strength was good for him.  And us too.

And now I promise to stop bragging about it....however please note that this promise expires in about 5 seconds.

His display board

Recieving his Award

Remember Me?

Remember me?  I like good music, Canadian literature, scrapbooking, folklore, old graveyards, sitcoms that came on after 10 p.m., going out for coffee, shopping without a direct purpose (and not just at Walmart or the grocery store), chatting on the phone.....
This is a partial list of things I used to enjoy, ways I used to define myself.  And they're all mostly past memories.  I know being a mom means becomming selfless, but sometimes I can't help but wonder if I'll ever have time or opportunities to indulge my old interests again.
And now is the part where I make sure to qualify that none of those things hold a candle to being "Mommy" to my sweet little ones...but still...there's a twinge...a small hint of the me that used to be.
I see a lot of people who appear to do a better balancing act between Mom and Person than I do.  They can still maintain social lives, make time for themselves....all in all, they are still themselves.  I am sure that their  approach to parenting is much healthier than mine!  But then again, parenting a child with special needs makes balance an awful lot harder to achieve.
I know there's lots of merit to the "Be sure to make time for yourself" way of thinking...but usually when I hear that, it just sounds like one more thing to worry about.  Let's face it, when you have a child who often doesn't sleep, and an active toddler to boot,  you're just plain wiped out.  So time for myself involves getting to run to Walmart ALONE on a Saturday while hubby is home, catching a t.v. show while folding clothes, or, thankfully, yes thankfully, reading a book while the kids are eating their breakfast, or playing around me!
I'm sure all moms feel this way from time to time...just a little lost in the shuffle.  And these just may be the busy, hectic days of having small children that I'll pine for in years to come.... because I'm sure I'll never be as loved, adored or needed as I am right now.  My babies are young enough to view me with stars in their eyes....in a few short years, no doubt, I'll be more gatekeeper, rule maker, fun-spoiler....
And I'll be asking them to remember me just as I am now....

World Autism Awareness Day

This is a day to celebrate differences, celebrate our courage in facing obstacles, and to celebrate each other.
To anyone and everyone who refrains from passing judgement, who teaches their children the beautiful value of acceptance, who see the world in a myriad of colours, and like it that way, thank you.
To all the teachers who truly love children, who work hard to make schools user-friendly, respectful environments, thank you.
To extended families and friends who are loving and welcoming, who give warnings before turning on their vacuum cleaners, who don't get insulted if we can't make it, but continue to invite, or keep a stock of straws in their cupboards, thank you.
To all the siblings who become little ambassadors, who learn to speak up from an early age, to protect, to defend,who learn tht life isn't always fair, and have to sacrifice more than they should, and who often grow up to be the world's most caring, loving individuals, thank you.
And to all the moms and dads who speak for their children, who work to improve or extend services, who make places for their children in this world, who get up and go each day, even on the hard ones, you work not just for your children, but for mine too.  So, thank you.