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.

The Sisterhood...

It's funny how it all works.  You have friends who have travelled through time and space with you, and those relationships are meaningful, and their depth is born from years of time spent together, and common experiences. 
And then, you can meet some people now as an adult, and instantly feel bonded because they share your biggest struggles, your biggest fears, and your biggest hopes.
To be able to sit down with other autism moms....and not need to hand out dictionaries so that they can follow your conversation...to know people who speak your language...  Occupational Therapy, Speech Language, ABA, A-DOS, proprioceptive, vestibular, hypo, hyper, ISSP, wait lists, therapeutic listening, fidgets, chewy tubes, sensory integration, visual strategies, time timers, Z-Vibes, 5 Point Scales, social stories, power cards, and on, and on, and on.
To know other moms who have trampolines in their living rooms, and inddor swings.  To be able to have a conversation where other people can say, "Oh my God, it's the same at my house", or "that's an issue for us too!".  To know other people who understand that birthday parties are a hellish experience, ones to be endured, but certainly not anticipated, or likely even enjoyed.
It's an instant connection in many ways, we are drawn to each other like magnets.  Once we find a way to get together, you almost have to pry uis apart.  Everyone wants to know other people who get it.  Who understand.  Who live what we live.
I am so grateful for all of you, wether I've met you through this blog, the Autism Society's facebook page, standing on the side of a soccer field while our kids "play" soccer, in the swimming pool, at a conference, a support group, or just by acident.  Just knowing you are all out there makes my life just a little bit easier.
So, thank you to the sisterhood of autism moms.... everyday we move mountains.  Together, we might just manage to keep each other sane!
And Allison, if you're reading....this one's for you.

The Sweetest Thing

I could eat him up.  Honest to God, Aiden is so sweet sometimes, that I have to fight an overwhelming urge to bite right in.  It's the little things he does sometimes that make him so irresistable, so moreish.
Like the way he'll take his sister's hand when we're walking.  Or get upset if she doesn't come with us somewhere.  Or always keep her close, herding her like a sheep dog when we're in a store.  Gorgeous.  He lovvveeeessss her.
Or the way he'll  build an elaborate craft, or indoor construction site (usually something I may typically ask him to tidy up) and claim that he made it for me.   "Do you like it?  I made it for you Mommy.  Do you like it?" ...please..what kind of Mommy would I be if I didn't just love it.
But what really gets me, is the way he can be so sensitive.  How a slow, quiet song can make him cry.  Not a big gulpy, I want my own way cry, but a gentle, lower lip quivering, eyes instantly filled with tears little cry.  As if he is just overtaken by an emotional response.  Kills me.  Or how a big upset can only be cured by track #8 on my Hey Rosetta! CD.
Yesterday, during a quiet moment together, telling him as usual how much I adore him, his little lip started to go.  It only lasted a little second, and he was back to him boisterous little self.  But it slayed me.
You see, he might not express him emotions like all other kids, but, rest assured he has them.  There's no child more loving, and more appreciative of love.  More addicted to the warmth of his family.  ...and he's ours.  So, in many ways, even though we're a family with a lot of challenges, we're also a family with a lot of blessings.

A List of Things...

I've been thinking lately about things that could generally make my family's life easier.  Things I wish the public at large could understand and implement in relation to  Asperger's / Autism.  Turns out it is quite a list,  infinite...but there area some little things that could be considered to be my top 5 wish list. (insert throat clearing noises here....)

1. Eye Contact: If you know that my boy has autism, you may be tempted to really fight for eye contact while speaking to him.  I recognize that it is an important communication tool for you, but it's not for him.  He'll make it if he feels like it. He'll make it if he wants to.  He's likely to make it if he is comfortable.  If he doesn't, that's okay.  Eye contact can be physically uncomfortable for peole with autism, kind of like asking you not to blink.   And, eye contact can be overated.
2. Repetition: Most people are not aware, that many people with autism have an auditory processing delay.  This means that it literally take s a moment for what's been said to sink in.  So, please wait appropriately.  Saying his name 5 times in a row will just slow down this process, confuse the system, and he won't even bother trying to listen, because he's already learned to tune you out, you are overwhelming. You are confusing.  Similarily, and ohhhh so importantly, if we are speaking to him, please do not misinterpret this delay in response as disobedience, and feel the need to join in in with what we're saying.  This leaves him confused...and us annoyed! (sorry...but true)
3. It's all good:  This one is for professionals who work with children with autism.  Yes, there are many social skills our kids need so that they can make friends, take part and get along with others.  But, please do not have your goal as trying to "fix" everything about our kids.  It's okay that Aiden has Asperger's.  It's okay that he is different.  Not everything different should be fixed.  Not everything different is wrong.  So, professionals..pick what skills need to be developed, and which behaviours need to be modified.  And then,  learn to appreciate, and respect diversity.  (whew...that felt gooooood.))
4. Relax, Enjoy:  If you're around my boy, or any other person with autism, just relax, and enjoy the experience.  Like you would interacting with any other little boy.  Not everything is about autism. (I'm still working on this one myself.)  Don't feel like you have to be cross referencing his behaviours with something you have heard about, or believe to be true of autism. Just enjoy his company, it's okay to be interested in him, because Asperger's Syndrome is really interesting.  But, he's just a boy, and he deserves, and needs casual, enjoyable interactions.  So, just chat, hang out, enjoy.    Remember, autism is only part of a person.
5. Public Meltdowns:  If you read my blog, or know anybody who has a child with Asperger's, then you know that meltdowns happen.  They come fast, and they come furious.  They don't always come often, but their magnitude makes up for that!  So, if you see a child melting down in public, please do not pass judgement.  You have no idea what has happened, and you may not even understand that this is not something that can be rationalized.  This is no time to try to "talk some sense" into the kid.  And generally, strangers getting involved can definately exasperate the situation.  So, no matter what you're thinking to yourself about the kid's behaviour, or the way the parent is handling it, please do not pass judgement.  This is a minor inconvieneince in your peaceable existance, and a big part of our family life.  So, please, be tolerant for a few moments, because we have to practise tolerance and patience more than you could imagine.  However, a kindly smile would not be construed as interference.  And it might feel nice.

H1N1 Fear

Honestly, there's always something to worry about.  H1N1 seemed like a distant threat...until it came to town.  People are getting sick here now, and the kids haven't had the chance for the 2 weeks post vaccination to kick in.  And, you know what?  I'm scared.  Terrified actually.
Both of our little ones fit into the high risk category because of their age.  Margaret, at 20 mos, is healthy with a great appetitie, so I feel like if she gets sick, she has some reserves to see her through.  Yikes.  However, I cancelled a regular clinic appointment for her today because I don't want her around anybody who may be sick.  She is my little baby after all.
Now Aiden...he has had no appetite for a few weeks now, and he has definately l;ost a few pounds.  Pounds he really could not afford to lose, so I'm worried about him.  I'm trying to fatten him up, going so far as to buy Boost Plus Calories, to try and put a little meat on his bones.  Because, seriously, if he gets sick....I am afraid it could get dangerous fast.  Even though he is healthy, he is just soooo small, and most likely low on iron too.  Not from lack of trying to feed him mind you.  He just doesn't seem to understand the eating thing.  Is annoyed by the time it takes up when people stop to eat, God forbid, a meal.  To me, this sounds like a dream!  But not when your little boy is getting smaller and smaller in front of you, and surrounded by healthy food, with healthy meals cooked daily.
So, either I've fallen for the media hype, or it's the fact that my sister and kiddies are feeling suscpiciously swine fluesque that my back is up.  And I'm trying to get Aiden's weight up.  I don't have time to get sick, or the energy for my hubby to get sick either.  It is crazy, and scary, and one more thing to worry about.
 It's always an arse or an elbow my Nan used to say...(translation: there's always something.)