No. Seriously. Stop.

"Stop". "Don't".  "I said don't".  "Did you hear me?" "Are you listening to me?"
It's just been that kind of day.  Actually, that's a lie, it's been that kind of an evening.  I felt like a broken record, and as ineffective as could be.  I feel negative and that just makes me feel guilty.  Ahhhhh!!!!! 
If I'm honest with myself, and allow myself some true insight, I know that what I experienced this evening was just the result of an overly-stimulating day.  We had a visit to a friend's house today, which both kiddies thoroughly enjoyed.  There were a couple of little tiffs, but nothing earth shattering.  But it doesn't matter, because even if that went well, the whole time he was there, he probably felt socially confused and anxious.  So, it just makes sense that once he's back on the sacred soils of 'home' he's going to let it all go.  He's going to unwind...and God help the rest of us!
You see, when I take the time to put it in perspective, it makes sense.  And my patience is restored.  And I can empathize with him, like he needs me to.  But when I'm in the midst of nonstop noncompliance coupled with the energy of  a bucking bronco, it's harder  not to feel defeated. 
I can handle a lot of emotions.  I can handle feeling anxious, I can handle being scared, but I cannot handle losing hope.  Hope is what drives me, hope is what makes me keep trying.  Hope is why I take him to so many different activities, knowing it is stressful for the both of us. 
As usual, hubby came through with the sound advice I needed.  I was feeling pretty low once the kids were finally asleep in their beds...and he told me it was okay to lose hope, but to try just to lose it for one day.
He's right, as usual.  I'll be filled with hope again tomorrow, somehow it will spring up while I'm sleeping and fuel me.  Tomorrow morning I'll look into the beautiful little face that I've been trusted with, and feel instantly replenished. Just the same, I'm glad that he could acknowledge how I felt, allow me it, and somehow let me know that it too would pass....  And all in one sentence!

Lovin' Lego

As a kid, I loved Lego.  As a mom, I love it even more.  It is such amazing toy, and I am blessed to have a little boy who just adores it.  Most mornings, when Aiden first comes downstairs, he heads right for his Lego bins.  And I couldn't be happier about it!
This is a toy that was designed for kids like him....creative, and "builders" by nature.  It has been so useful for him, it is a hobby that has helped him to spend quiet time with himself, he is able to sit still and work on his creations for long stretches of time.  I'm not worried about lack of activity, he can burn more calories in 5 minutes than most kids expend over hours of time, so these little islands of stillness that Lego offers are a blessing.   He can share this interest with lots of other kids, and it's a nice way for him to spend time with me and his Dad...it's something we can all play with together.  (We're still working on making Margaret's input more palatable!)
Lego is calming, quiet play.  Lego can be used to work on following directions if you work on step by step plans, or it can be 'freestyle' creating.  Love it, love it, love it!  I am amazed at the different things Aiden is able to come up with.  He never fails to impress me with his attention to fine detail.  In fact, I'm just downright proud of it altogether!
It doesn't make noise, or have flashing lights, it's just good old fashion skill-building, creative, imagination-allowing fun.  Lego, you rock!   Of course, in a pinch, a pack of markers and a pad of paper are pretty good too!

Music Appreciation (?)

Yesterday was one long day.  The morning started with a concert by the Newfoundland Symphony Youth Orchestra at the local Arts and Culture Centre.  I didn't know how Aiden would like that...but in an effort to expose him to lots of different things, I thought it was worth a go.  Besides, he seems to have a soft spot for some music, typically the melancholy sort.  Also, he really likes the fancy red flip down seats at the centre.  OK, and I admit it.  I was hoping he'd  be drawn to the cello, or violin, and thus awake a yearning to learn to play such an instrument. (Fast forward, didn't happen.)
However, he did sit through the entire performance without too much hassle....certainly my contraband stash of gummie bears didn't hurt. About half an hour through, he started asking to go home...so I whipped out a pen and some paper so he could doodle quietly for the rest of the show.  But, when the orchestra played Blue Danube, he just stopped talking, rested his head to the side, and didn't say a word.  Bingo!  The moment I'd been waiting for!  He enjoyed it, I know he did.  Yay!!!
However, on the way home, when I asked him what his favourite part had been, he said. " I liked the part where we went home." Groan....
Later in the afternoon we had a homeschooler's Valentine's Party, where he thoroughly enjoyed himself.  I was a little flustered by trying to sort through endless stacks of Valentines to stuff into boxes, but he just had fun.  Which is great.
But by last night, after all the candy from the show, and all the cookies from the party....he was "on the go", and I was wiped out! So today, I might just take it easy, I was hoping that the forecasted freezing rain might cancel this afternoon's swimming lessons...but I don't think so. Hmmm...maybe I just won't mention that it's Friday!
Because honestly, the very act of writing this post, is a celebration of sitting down.

Roots and Wings

A famous Chinese proverb states, "It is the wise parent who gives his child roots and wings."  Sage advice, but a lot harder than it sounds.  Ideally, we all want to give our kids a solid foundation, great self esteem, confidence, life skills, manners, experiences and an education that enables them to become strong independant people.  People with wings.
Unfortunately, finding that balance can be hard.  Because they don't just wake up one moring and grow wings.  We have to give them little test flights along the way.  And therein lies the hard part.  Knowing how much leeway and freedom to give along the way, and trying to decide how much they can handle.
I've been trying to give himself some more freedom at gymnastics, trying to stay in the parent's waiting area, with the large windows, just a hand signal away from the coach.  But it's tough!  If he goes in by himself, he is practising independance, and interacting with another adult without my help.  But, on the other hand, he isn't participating as much in the actual gymnastics....which is more important?  I find that I'm always trying to decide what my goal is, what to prioritize.
I wonder how it might be different when Margaret is old enough to be "in stuff"....I notice how other parents can stress about having their kids enrollled in enough different activities, but they don't seem to stress about how their kids will behave or perform in all of these activities.  I guess my goals are different.  I don't actually really care if Aiden becomes a pro gymnast, skater, swimmer, soccer player, artist, etc....I just want him to have the skills that allow him to participate,and ensure that he gets to play and interact with his peers on a regular basis.
Maybe I should forget about the wings for awhile.  Perhaps I should set my sights on a parachute, or a hang glider for the time being.  Let him soar, feel the winds push him along, but less freefall.
Hmmmmm....being a wise parent is hard.

Reflections...

We're now 5 months into being a homeschooling family.  Our plan was to homeschool Kindergarten, and then drop him gently into grade one next year.  But I feel as though I have unearthed this beautiful gem in homeschooling, that I knew nothing about.  Turns out I love it.  And I don't feel as though we exist in a bubble, I feel like we are a part of a vibrant, lovely community.  I though homeschooling might be isolating, but it is actually quite the contrary.
I wanted to homeschool so that Aiden could get the supports he needed.  I wanted to homeschool so that I could teach him in the way that he'd learn best.  I really feel that both of the goals are being met, and surpassed.  But now I see how homeschooling affects families.  I see families where siblings are growing up together, not seperated from each other all day long.  And how learning isn't seperate from family life, but a natural flow, teaching your own child math and language arts is as natural as teaching them to say please and thank you.  It just feels right. 
I attended an autism support group last night, and the whole meeting was everyone talking about their school concerns.  For us, sending our special needs children to school feels like throwing them out of an airplane without a parachute.  And I'm not complaining about special service teachers here...remember, apart from this year, I am one.  It's just that our kids need a lot of support, and it's not just how they learn, it's also how they cope with the obstacle course of transitions and sensory input of a school environment, I think for  a lot of us, it's their anxiety.  Autism is an anxiety disorder, and our kids are happiest when they feel secure.
They feel secure at home.  I'm not suggesting our kids never leave the house, I work really hard at good socialization, and go, go, go a lot.  But we have a home base, this is where we leave from and go back to.  this is the sacred safe place.  Is that so wrong?
Homeschooling is a valid, valuable option.  It puts the focus on families, and it allows for truly individualized teaching.  When done within a community it provides ample opportunities for socialization and friendships.  I love it.  I love doing it.  I feel so good about being able to put my own experiences and knowledge to work for my own child.  And something that I've heard several times now from parents who have switched to homeschooling, is that it takes the stress out of the children, and out of the entire family.  Because when school isn't working out well for your child, it's not working out for anyone.

2 Years Later...

Yesterday was a special day at our house...it marked the 2nd anniversary of Aiden's diagnosis.  We make an effort to celebrate the day, we tell Aiden that it is special, because it marks the day that we found out he had autism.  Of course, he thinks autism is the best thing in the world, because he knows it is one of the things that makes him special.

He was excited to get to pick some activities...his requests were pretty simple, he wanted to build  a model, go swimming, and go to a restuarant for supper.  Perfect, all things that were totally doable for us.  I thought for sure he would choose Swiss Chalet, his absolute favourite place to eat, (pronounced Swiss Charlet)  but he surprised us by choosing McDonald's.  It was just as well, Fridays being so busy, we would have had to go to a real restaurant at a strange hour to avoid crowds.

In some ways, it seems like so much longer ago that Aiden got diagnosed.  I cannot even imagine now, not knowing.  I felt so responsible for so much, in many ways it was a relief to realize that it wasn't all my fault, that I wasn't doing everything wrong.  We were the parents who sought a diagnosis..who had a pretty good idea going in that he would land on the spectrum, so his diagnosis didn't come as a surprise, more of a confirmation.   
    
I've certainly learned a lot in 2 years..attended conferences, real a gazillion books, some better than others, I've met some great families, and many beautiful children with autism.  My life has taken on a whole other focus as well, issues related to special needs are often at the forefront of my thoughts, I see the world and the community in terms of accessibility, and acceptance.  To borrow a line I read from a book..."all of my whens turned to ifs."  That just about sums it up.  I no longer look torward the future with a certainty of what it will entail..I have no idea.  Only time, accompanied with a lot of hard work will tell.

But I will tell you this..sitting down at McDonald's last night, with my wonderful little family, I almost took it for granted that we could sit peacefully and enjoy a "meal" together.  This time last year it would have been harder to manage behaviour wise...2 years ago...I just wouldn't have went..so maybe some of that hard work is starting to pay off.

For 2 years now we have been calling autism by its name at my house.  It no longer catches on my tongue..it's as much a part of my family as Aiden is.  So, we are to celebrate the anniversary of its grand entrance.  Autism, you are difficult to deal with, you make life unpredictable and scary at times, but, you are a big part of someone I love, so you are welcome here.              

Happy New Year!

There's just something about a fresh start that makes you feel all good inside.  Hopeful even.  For me, it's a bit of a motivator, a chance to do some planning, and let go of some baggage.  Tabula Rosa.  A new year...a new decade even.
I'm enjoying a quiet Christmas this year (yes, STILL enjoying it..it's not over until the 6th in my heart).  Leading up to Christmas I was feeling pretty down, it was just very stressful to try to figure out how we would survive the holidays.  The family get togethers, the crowds, the expectations...  Hubby and I came to the conclusion that we do deserve to actually enjoy the holiday, so we forewent the big family dinner, and cooked up own bird here at home, just the four of us.  I did miss being with everyone, but I didn't miss the stress of it all, and definately feel like we made the right decision.  We were relaxed and happy together...what more could I ask for?  Holidays are hard, because they're a break from the norm, the routine, the predictable...so it is stressful for Aiden, which can make it stressful for us all.  So thank you to all family members who let us off the hook this year...I know we were welcome, and I appreciate that most of all.
I don't know what 2010 has in store for us.  I'm pretty sure it will include another year of homeschooling, because that is working out so well, I'm not willing to give it up.  Maybe Aiden will begin self-regulating a little better this year...maybe group lessons will go a little smoother, or maybe I'll learn to take it a little better on the chin when they don't. 
Little miss Margaret will be 2 next month, so I'm curious as to what will hapen to the family dynamic as she starts to become a more autonomous member...
So here's to 2010....please be kind to us.  We are currently operating at maximum capacity, and I hope that any surprises will be plesant ones.
And to all my readers....much happiness to you and yours, with blessings the whole year through.

A Letter to Remain Unsent..

Well it's been a while since my last post.  I've had a dilemna.  I had a great urge to write about a rather unpleasant experience that I had, but I do try to keep the feel of this blog positive.  I do not want to come off as bitter or angry, so time to had elapse to take the sting from my wound.  Because, bitter, and angry I was.
So, after a week of thinking about what I should have said to the woman that gave my son the look of death mingled with disguist during a recent trip to the hospital... I have crafted instead a letter which will remain unsent.  Written many times in my head throughout he past week...I've decided to edit out some of the nastier, not healthy for anyone parts...
Dear __________,
You I am sure will not remember the incident last week at the hospital, when, seconds from the exit, you overheard my son become very upset.  Nor do you care why he was upset, or have any idea about the multitude of factors that led to his crying and shouting on the hospital floor.  However, in exagerated looks meant to be noticed, you conveyed to your accompanying daughter your disgust at the behaviour you were being forced to witness.  Meant for the terrible parent of this screaming child to see.  Next, pausing with your hand on the EXIT door, yes, you were mere seconds from freedom of this event, surely you could have sucked it up and endured,instead you looked over your shoulder, and shot my little 5 year old a look that screamed your disguist, your intolerance, your lack of empathy, and certainly your lack of awareness as to his exceptionality.
Why did you do this?  Perhaps to prove that this is behaviour that YOU would never condone..oh, my goodness, no.  Perhaps you thought he just needed a stern look to make up for the oh so apparant lack of parenting.  Or, perhaps, you're just not a very nice person, and you feel the need to busy yourself with other people's lives, assuming that your opinion of a situation is of any relevance or importance.
Maybe you just take for granted that you have a typical child, and never had to endure these moments.   But you see, something strange happened.  Instead of being embarrassed by Aiden's behaviour, I was embarrassed by yours.  Imagine! 
You see, you didn't look at me, you were too busy throwing daggers into a small boy's face.  But, me, I saw yours.  And I know you, and you know me.  And I know what you do for a living, and I certainly know that you would be expected to be a person of tolerance, and patience.
So, I 'll keep your name withheld, such gossip would surely feel good momentarily, but Iwould come to regret the pettiness of it all prety quickly.
And, besides, I try to be a model of civil, respectful behaviour.
And, who knows...I don't know the events that led up to your appalling behaviour either.  Perhaps you just received terrible news..perhaps something horrible is going on in your personal life.  That is why this letter will remain unsent.
Natalie

And now, perhaps after a week of brooding, I can move on.

Little Boy Lost

One Nova Scotia family is currently living through every family's worst nightmare.  They have lost their precious 7 year old boy.  Little James Delorey followed his family dog from his backyard, wandered into the woods, and after surviving 2 long, cold nights, was not able to bounce back from his injuries.  Poor little man.
We feel sad for any family that endures that which we cannot even imagine.  But, for autism parents, the scary thing is, that this is one tragedy we can imagine.  Our kids wander.  Our kids will open the door, and walk right on out.  Without the casual shout over their shoulder of, "Mom, I'll be in the yard."  Many children, like little James cannot even speak.  Others, like my own, have full speech, but hampered communication.  And hampered understanding of what information you need to share with your family.
This little boy's passing jolts the entire autism community.  All of our 'what ifs" have been confirmed.  Your child can get lost.  Your child may not respond to their called name.  Despite all of our best efforts, horrible things can still happen.
The news of James's passing came to me right at the heels of a rather embarrassing public meltdown.  I was agitated, I was annoyed, I was exhausted.  I was feeling defeated.  And then I heard.  And perspective came to me hard and fast.  I'll hold both my babies a little tighter tonight, and kiss the tops of their warm little heads just a few extra times.  And I'll be thankful for them.
Little James...my prayer for you...a peaceful rest my boy.  A country cries for you.

The Mom in Me

I'm not the Mom I thought I would be.  Life with my young children is not at all how I envisioned it.  How I dreamed it, and played it out since my childhood games of dolls, and countless hours "playing house".. 
I'm crafty, I love to bake, I'm happiest when I'm at home, I enjoy family field trips, and celebrating all seasonal activities.  All of these things seemed to me like really good Mommy ingredients.
But, as it happens, these aren't things you can do on your own. 
Don't get me wrong, I try.  I try really, really hard.  But it isn't how I thought it would be. 
My kiddies do enjoy baking, and they certainly enjoy doing crafts.  But it's not the happy go lucky, all fun, no hassle activities I thought they would be.  It's really hard to do a highly structured craft, or play a rule-ridden board game with a little boy who has all his own ideas.  Al the time.   There comes a point when it just stops being enjoyable, and you find yourself expending sooo much energy on getting him to follow the directions, and to stay focused on the activity, that it's not fun anymore.  It's work.  Plain and simple.
And all the things I thought we'd do together!  I never dreamed how hard it would actually be.  The library....maybe not.  All that keeping your voice quiet business is sure to cause some issues.  The Museum...all that no touching, just looking is bound to cause a fuss.  Family get-togethers...where all of the adults congregate and chat, and I'm stuck with all the kids on supervisor duty.  Becuase it's different for me, I can't trust that everything will be fine...because everything isn't fine all the time.  Stuff happens, and I've got to be there. Simple lessons, I have to find ones where the parents can participate, or at least attend, because he's just not going to just follow along with the group.  If he finds something more entertaining, he'll be oblivious to the fact that there even is a group.
However, I still do things.  We still go lots of places.  But it's different.  I'm broadening his social sphere, I'm exposing him to things, I'm making sure he gets lots of practice in different environments.  In short, they're not just field trips, they're therapy.
And our days at home together aren't the glorious sun-filled hours I envisioned they'd be.  Some days I think I'm going to stroke...there is just so much to manage that I can't help but feeling a little defeated.  Like, for example, at 3:30 this morning when he came creeping into our room, and it was painfully obvious that he was up for the day.  And that was that.  He's not the kind of kid who's going to play quietyly in his own room while we slumber on.  Not going to happen.
Parenting is harder than anybody believes it would be.  But sometimes I'm still shocked that I have a child with behavioural issues. Me!   I was such a good, compliant kid myself.  I thought I'd do everything right, and that my children would be perfectly behaved.  Ha.  How arrogant of me to think myself immune.  I'm not immune, I'm no better than anyone else, and my chances of having a special needs child were just as high as anyone else's all along.  I just didn't think it would happen.  I guess I didn't think that would be fair.  Fair!!!   Another illusion.
So I'm not the Mom I thought I would be.  Truthfully, I'm better.  It's not as fun perhaps, but it is definately meaningful, and when you are rewarded by hugs, kisses, happiness, small signs of improvement, it's all the sweeter.  I get it now.  It's not about the children you thought you'd have.  It's about the ones you hold in your arms.  And whatever they need, whatever they enjoy, that's the Mom I'll be.