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.)

A Little Good News...

Well, a few good things have been happening around here lately.  And no, sleep, unfortunately isn't one of them! ( not to dwell, but Aiden was up until 1:30 a.m. last night, and Margaret started crying at 4 a.m.)
But, a new support group for mommies of school age kids was started up by a local parent, and WOW!  We are all having very similar experiences, and most of the kids are older than himself, so I'm getting a heads up on how long I can expect certain things to continue and so on.  Plus, they're really nice ladies, so that's an added bonus.
And, very exciting for me, a letter I wrote to CBC Radio's The Current was aired yesterday morning.  So, I was very happy ..perhaps giddy from recent sleep deprivation...but feeling good nonetheless.
And, then, Aiden went to an Arts and Crafts group held with local homeschoolers...and he had a ball, was chatting away with the other kids, and just generally giving me hope for the future.
And I'm all about hope.
(and sleep too....but like I said, not dwelling.)

Sleep, Be Not Proud

Okay, hubby says I should stop complaining about it, and just accept it as our lot in life...but I am sooo tired!  I was designed to get my 8 hours a night... so this recent period of insomnia that Aiden is going through is draining me.  Hence the recent lack of posts.  Too tired.  Same reason my laundry piled up, and the kitchen floor is rotten.  Tired.  Neeed Sleeeeeep. ZZZZZzzzzzzzzzzz.
I remember when Aiden was a baby, who never went to sleep for more than 45 minutes at a time.  At first everyone consoled me that breastfed babies wake a lot.  Well, to be honest, everyone I knew with babies was breastfeeding too, and their little ones slept...like the proverbial baby.  Then I was told that he'd grow into sleeping through the night.  Also a lie.  I think you either get a sleeper or a non sleeper.   Little miss Margaret is a great sleep-thru-the-nighter...unfortunately, her big brother isn't.  He's always gotten up once during the night, but for the past couple of years, he's generally gone right back to sleep.  Then, the past 6 mos. of so, he's taken to waking up, and going back to sleep in a few hours time.  If at all.
It's now almost 11:30 p.m., and the little boy has finally closed his eyes...after 3 and a half hours of my waiting with him for sleep.  And now it's time for me to close mine....because he may be waking up soon.
So, my awareness message for tonight...autism/Asperger's greatly affects sleep.  And behind every sleepy child, is a sleepy parent.
Night night.

Happy Thanksgiving!

I'm thankful for:
family, friends, warmth, feeling safe, the odd few minutes to myself, good music, Barney, being in love, sticky kisses, shopping, good books, and the chance to read them, chewy candy, having more patience than I knew, those warm fleecey sheets from Costco,  my great fortune in being born Canadian, having my priorities straight (I think) and a hubby with a gift of giving me perspective when I need it.

The Social Question

The number one question I have gotten about my decision to home school, is, I believe the number one question that every home schooler gets.  But what about the social?
I think there's a prevailing belief that just by nature of children being surrounded by their age mates, that they're being socialized.  I can see that this belief is usually the case, for typical children.  So, it stands to reason that these parents of typical kids would think this way.
But, I gotta tell you.  Having worked in schools, and having been a student myself, don't you realize that for lots of kids, school is a very negative social experience?  Being bullied is a social experience, but it's one I think kids could do without!
Once people hear the word autism, they assume that kids need to be socialized.  I couldn't agree more. But socialization is more than being in the room. I feel that these kids, my boy included, needed to be helped with their socializing.  Just throwing them to the wolves, without the skills and supports they need would be disastrous!
So, Aiden's not going to school.  But, he is learning, and learning a lot!  So far, home school is in every way the right choice for us.  He's developing lots of great skills, and accumulating knowledge in a way that wouldn't happen in a regular classroom.
AND, he's getting the social aspect in a way that works for him.  He's signed up in music, swimming, and arts and crafts,  Plus he'll be doing drop-in skating and bowling during the week.  So, the social piece is there.  But, so am I.  I'm not sending him off to fend for himself, or to drift away from the group, or to act in inappropriate ways without being corrected.  He has my presence and suppport, and he needs that.

So, what about the social?  There's social.

Awareness

Well, it's October 1st, so Autism Awareness Month is just begun.  Sometimes I can't help but wonder what our goals are in this.   Don't get me wrong, I am all for Autism Awareness, and like to think that through my blog I help raise awareness about autism.  But, my aim is not just to make people aware of how widespread, and crazily common autism is.  It's not that I don't think that's important, it's just that I can't help but feel that people aren't too concerned about it until it affects them directly.  None of us think these things are actually going to affect our kids...until they do.  I'm no different here from anybody else.  Due to my career, I was interested in various exceptionalities prior to my boy's diagnosis of AS, but I wasn't out waving flags.  It's just human nature I think.
Perhaps the goals of autism awareness should be for the public to understand what autism actually is.  Maybe the challenges of autism families should be better known, so that the public would have more empathy in general.  And so that society and governemts could know which supports need to be in place, and actually put them there.
Maybe we need to change the way we think about autism.  Yes, it's a disability, but when soooo many people have it, it has in many ways become a new way of being in this world.  So, maybe people need to be aware of, and accept that.  Maybe people need to challenge the notion of "normal"...how's that for awareness?
I mean, the truth is, even the autism community can't agree on what awareness should look like.  Just look at all the controversy Autism Speaks sparks!   I'm not positioning myself one way or the other, but they certainly draw attention to the fact that not everybody agrees on what our message is!
I know what my message is. At the last event we attended at the local autism society, I was personally just struck by all these little boys.  Everywhere you look, all these little boys.  All of them working so hard to deal with their ways of being different in an intolerant world.  All these little boys, so loved, yet so challenging, and so joyous to their families.
We do need awareness, but what we also need is the understanding and support to go along with it.

The Road to Acceptance

I have a confesseion.  While I accept that Aiden has autism, and made peace with the word, the label, from day one, accepting what that actually means has been quite another journey.
Turns out the road to acceptance is long and winding.  That has come as a surprise to me.  I knew that accepting your child's diagnosis of an exceptionality mimiced the grief cycle, but I really did not expect it to be a two step dance, one step forward, two steps back.
You see, I was okay with it all, because we love him as he is, it's okay to be different, etc. etc. etc, place your own parenting cliche here.  But the reality is, every time I am made painfully aware of his differences in certain social contexts, like, say...the dreaded birthday party, I find myself back to a place I thought I had left long ago.
Sometimes seeing his through someone else's eyes hurts too.  Like if I see someone kind of looking at him quizzically I might get a blinding, stabbing pain that I wasn't expecting, because I already thought I was accepting.
Or if I'm chatting with somebody about it all, even somebody close, and they make a statement about him, it shocks me when it hurts.  No ill will was intended, it's just that sometimes I'm not prepared for other people to notice his ways of being different, if they notice it, it may mean that everybody notices it.  The sane part of me knows that he is different, plain and simple, and people are going to notice.  That same sane part of me knows that one day I will be able to handle that better, but as for right now, it stings.
You see, at 4, going on 5, we're just leaving that grace period that a tender age allows.  For so long, he was just such a verbally advanced kid, that all people noticed about him was how smart he was.  Quirky behaviours are adorable in young kids, which is oh so helpful.  But that lovely umbrella is starting to be lifted away, and I'm clinging with two firm hands.
I know that my acceptance will continue to grow, just as my love will.  I'll come to better know who he is, and someday I'll to stop wondering about who I thought he was going to be.
Because even though this road is long and winding, we're buckled in, and commited to the drive.

Kickin' it Home School

So far, so good.  At least I think so!   We started home school last Thursday, so I'm just 4 days in...perhaps too soon to draw conclusions.  But, I know one thing for sure, it is hard enough to maintain attention with just him and his sister, in a classroom designed not to distract, so I don't think regular school would have been a great choice this year.

This morning we had a field trip to the local CBC building with the home schooling group we're a part of.  It was a big bunch of kids, and the tour was so great.  Aiden was very well behaved, much to my relief.  Due to the field trip, we did school in the p.m....definately harder to keep focused then, but some days it will have to be that way due to scheduled activities.

There are going to be lots of group activities to participate in all year, and it seems like a really great, really BIG group, so I'm happy.

Tomorrow I have my meeting with the school board official in charge of home schooling, and my cooperating school's principal.  So, no longer is home schooling something I am going to do.....I'm doing it! 

I wasn't going to do this...

Oh well, it is what it is.  That's what hubby and I always say to each other after some long conversation, "it is what it is." 
Tomorrow Aiden should be heading off to school.   He should have a whole backpack with matching lunch box laid out by the door tonight.  But there's no backpack.  Because the little boy I thought I had 4 and a half years ago, isn't really that boy at all.  And sometimes I miss him.
I am trying to focus on the relief I feel that I don't have to face school this year.  I am trying to focus on the fact that he is still doing Kindergarten.  And the fact that he is so excited about his little classroom, and how he'd much rather stay  at home.
But, he doesn't realize that all the other kids he was babies with are going.  But I do, and, this is the first real difference his disability has afforded him.
And I can't help it, but it's killing me.
And, I wasn't going to write this.  But for those of you who know parents with special kids, these are the "special" moments that we have to face.  Special isn't always fun.  But, it is what it is.

Too Good?

I have a theory.

I was listening today about a radio program that was speaking about how kids today tend to be "over-parented".  And if you give this just 2 second thought, you'd be forced to agree!  Kids today are so heavily scheduled!  Everybody is in lessons of some sort, being shipped from soccer to piano to pre-planned playdates, to you name it!  It seems that they go from one organized activity to another as fast as they can get.  
Not to mention daycares.  In order for a child to be succcessful in daycare, they've got to learn from an early age to tow the line.  To follow the little rules, nap at naptime, eat at snack time, play at playtime...on and on.  No longer do kids play dress up, oh no, these days, they take advantage of the Drama Centre.  Oh puh-lease!!!
The result?  Apparantly, kids are too good.  They're overly compliant.  Imagine that!  I guess it sounds like a dream come true, but what it really means, is that kids no longer get to (or have to) think for themselves, or make their own mistakes.  Not good.
So, what's my theory?  I think that all of this has made it harder on kids who have behavioural issues.  There were kids with Asperger's in the past...in fact, once most people learn about it, they think of someone they grew up with, who just must have had it.  There were surely kids with ADHD in the past too, didn't you have a kid in your class who just couldn't sit still?  But, today, these kids stand out wayyyyy more, because everyone else is so good.  Bad behaviour blended better in the past, because kids were kids, and no one expected them to be perfect.  Childish behaviour was more tolerated.  Dennis might have been a menace, but he didn't warrant a behvavioural management plan!
So we've got loads of "good" compliant kids milling around, making all the "bad apples" stand out just a little more.  Being different stands out more, even though today's children are suppossedly more accepting of differences.
Well, good apples/bad apples, it doesn't matter....because I wouldn't trade my yellow apple for all the world! xoxoxo

Truth be told....

I will never sit my son down and tell him that he has autism.

I don't have to. Prior to diagnosis we made the decision that we would talk openly, and with acceptance about autism. We drop it in conversation all the time, "Did you know that so-and-so has autism too?", or, "You are great at that. Did you know that lots of kids with Asperger's Syndrome are really great at that?" I'll tell him that I'm thankful for the autism that makes him extra special. I want him to be raised in the knowledge. I don't want to have a big disclosing talk one day, that makes it seem like it was too big and horrible to have spoken about all of these years.

I also accept that my baby is different. It won't be too long before he realizes that he is different too. But, with the knowledge of why he is different, maybe it will help him to understand his differences better, and hopefully to embrace them. At the very least, to be knowledgeable about his syndrome and able to speak up for himself if he has too.

Studies show that knowing you have a diagnosis of Asperger's during those difficult adolescent years greatly affects one's ability to keep their self esteem in tact. And that's my goal. Kids tend to be pretty hard on themselves for not fitting in, they see it as a personal fault, rather than part of their disability.

That being said, I never use Aiden's label as an excuse card. If he's having a really hard sensory day, I'll mention how a lot of children with autism find loud noises awful, etc. But, I never use it as an excuse for inappropriate behaviour. He has to learn to take ownership of that all on his own. Does he have to work harder than other kids? Yes. Is it fair? No. But it is his reality, and I do him no favours by giving him a free pass, because he certainly won't get one anywhere else in that big world we live in.

I also want to take advantage of all autism events, where Aiden can go and see the support that the autism community has for one another. I want him, and all of us, to feel that we are part of something. That it's bigger than just our family, than just our boy.

So, you'll see the magnet on my van, and my hubby and I have some autism bling...because we are proud. We're proud of our boy, and truth be told, we're also proud of how hard we work together to do the best we can for him.

Getting There

Just a quick update, went to my first home school group meeting last night, and it seems like there is a lot of support out there! Will be lots of activities to do with other families, and lots of other people who are doing what I will be doing! It's always great to find footsteps to walk in.
So I am busying myself now, getting our little classroom put together, organizing supplies, and just generally getting set up.
Should be fun!
(Then again, it might be a complete and utter disaster.)
Time will tell!

Autism: Finding My Voice

Pretty ironic actually, but for a communication disorder, autism sure gets parents talking. I don't think there's an Autism Mom out there who hasn't had to learn to speak up, whether it is something they liked to do in the past or not. Being a special needs parent means encountering special situations, and, let's be frank...encountering a lot of ignorance along the way!
A list of examples would be countless...from cashiers weighing in when I'm speaking to my boy to the portrait studio lady who asked my little guy why he couldn't just sit still like his cousins...it's annoying. REALLY annoying.
But it's not these little brush ups that get my tongue wagging. With all invisible disabilities, parents are used to people not being very understanding of their child's behaviour. You get used to people not getting it.
What really bothers me, is that I have found I've had to be most assertive in places where you think you'd find more support!!! (Oh..fellow autism parents...I just know you are nodding your heads right now.) There are sometimes professionals who aren't being professional, service agencies who forget who they're servicing, other autism parents who think that their kids are the only one with needs....etc. etc.
Here's one example...at a soccer game this summer, some other child's home therapist actually interrupted me while I was talking to Aiden about an incident, and proceeded to speak to him herself. And next thing you know, I was hearing myself say, "Excuse me, but I don't need your help to parent my child." OH MY GOD! I couldn't believe I had said that to someone! Was I right in saying it? Yip. No doubt. What made me feel crappy is that I have gotten so used to having to speak up, that it now happened as second nature. I don't want to always be on the defense, always ready to step in and defend. I feel like Mommy Wolf sometimes.
But that's it, all parents have to look out for their kids. All parents have to speak up for their kids. We just have to do it a little more often.

Paint Me a Picture

Sometimes I think that if I just knew what the future would look like for Aiden, I"d feel better. It's just that all this guess work, and trying to forecast issues that may or may not arise is exhausting. I could handle all of these young years better maybe if I knew that everything was just going to be okay.

That's the thing about the autism spectrum, it's a spectrum. No 2 kids are alike. And while it is interesting, and maybe partially informative to hear how so-and-so's kid is making out, it doesn't tell me how my child will make out. It's all up in the air, and I find that really hard to handle. I am the type who needs to know what has to be done, so I can get to work and do it. This uncertainty is painful to me. I want to be able to make the best decisions for him NOW. It's all this waiting and seeing.

Aiden can change so much from week to week, and month to month, I can't get a clear picture! Some days I don't think people would believe me if I told them he has autism. Other days, it is very, very obvious.

I would love so much for someone to paint me a picture of his future. I'd love to see a picture of a young man, who's used his smarts to their best ability and has a solid career. I'd like to see him with friends, places to go, things to do.

But most of all, I'd love someone to paint me a picture of a man who is happy.

And loved.

...maybe that's one way I'm like every other parent out there.

The "A" Word

My son is not autistic. He has autism.

When people say "autistic" is just feels like my skin wrinkles and crawls and tingles in horrible, unspeakable ways. It is a word that I hate. It is not a word that I use.

I used to think that I was overly sensitive perhaps, but it turns out there are a lot of people like me out there. In fact, I've met few parents who use the 'A' word in reference to their kids. Our kids have autism. It is just one characteristic of them, not the be all, end all, all-defining characteristic of them. If you meet Aiden, and you heard that awful word first, you'd miss the opportunity for so many of his other great characteristics to take centre stage in how you view him. If I had to use an adjective for him, I'd say he's my creative kid...who has autism.

Now don't go feeling all bad if you're a regular in spitting out the 'A' word, and perhaps you're a parent who doesn't mind the word at all. That's fine...to each his own. Maybe you'll rethink it and agree with me maybe you'll rethink it and disagree with me, or maybe you'll just give your wording some thought. It's all good.

But as for me, I want to use language that puts the child first, and the label second. I think it's one of the reasons that some parents have such a big problem with labeling their children, they really believe that once they have a label, people won't see past it. Sadly, that is true in some cases, no doubt.

So, whether we're talking about a child with a heart condition, a child who has diabetes, a child with a hearing impairment, or a child with Asperger's Syndrome...let's let them be children first. Let's call them children first. And maybe, just maybe, everyone will see them, and appreciate them, first and foremost, as children.

Sometimes when you're sleeping...

Sometimes when you're sleeping, I just stare into your beautiful, silent face. So still, so restful. You just seem so small, and so young. It seems that I must have imagined that such a small, beautiful boy could have had me run ragged today, or that there could ever possibly be something "different" about you. When you sleep, you look like all others, somewhere else.

Everyone is in their own world when they're sleeping.

And, when you're sleeping, I feel the desire to gather you up, hold you so close, drink deeply your freshly-bathed scent. I am able to trace the outline of your cheek, without being brushed away.

Your little hands folded and quiet, your feet finally finished their day's journey.

In the morning you will rise, and your first couple of minutes will tell me which kind of day we will have. But for now, you sleep. And I continue my dreams for you...

House-bound

I don't get out much. No joking, I just don't get out much. Every time I'm invited somewhere, I have to go through a list of possible scenarios, and factors which will have to be negotiated, and decide whether or not it's worth the risk. Or if I'm just setting him up for failure. This is what is called by some as "stepping on eggshells". I call it being proactive.

Will there be too many people? Will it be too loud? Will a source of anxiety be present? Will I be able to handle the two of them on my own? Will I be able to peel him away when the time comes to go home? Did something happen here the last time that he'll expect to happen again?

The list goes on. Now, that's not to say that we stay home all the time. I often take a deep breath, say an abundance of prayers, and go anyway. I really try to get Aiden out out out, so that life will just get easier. We eat out once a week, and can now get through an entire meal!!! (Yay!) BUT, I go at off times to restaurants, so they're not too crowded. And, you will never, never, never find me at McDonald's playroom. (whole OTHER story) We survive birthday parties, skating, swimming, soccer, music classes, shopping trips, playgrounds, etc, etc. But it takes a lot out of me.

But, there's lots I don't get to go to. If you're one of my friends from Outer Cove, you'll notice I missed the Folk Festival today. Not doable. Way too loud, and if it weren't, he'd want to be in the playground the whole time, so I'd either have to hang out there away from the crowd all day, or have him crying to be at the playground part. No fun. I also had to miss my special cousin's birthday supper tonight. Hubby was working, so would have had to take kiddies, very close to bedtime, and kind of restaurant where it takes a while to get served, also too peak a time, and too many people at our table. Would have been bad too.

I've gotten used to missing out on things, but sometimes I really wish I could go. I also fear that people will stop inviting me places, because I can never go. I also worry that I hurt people's feelings with my "no shows" sometimes. What I really hate, is when people try to convince me that I should go anyway. I don't do that anymore, if I know something is going to end terribly, then I avoid it. I need Aiden to experience social success, and I refuse to set him up to fail because I don't want to miss out.

So, if I blew off an event you invited me too, I'm sorry. And maybe I'll see you at next year's Festival..maybe.

Autism Advocacy

I am posting here a copy of a letter I have sent to Ms. Yvonne Jones, leader of the opposition in our provincial government. She has shown herself to be an advocate for children with autism, and I wanted to share with her some of my own opinions concerning early intervention. I know lots of you out there share some of my views, and others may disagree as well. I urge you to contact her yourself, she seems to have "good listening ears"!!!
Contact her at yvonnejones@gov.nl.ca

Dear Ms. Jones,

As the mother of a 4 year old boy diagnosed with autism, I would like to thank you for the attention you have been bringing to autism in our province. It is clear to me that you serve as an advocate for our children. With all the struggles inherent in parenting autism, all support is appreciated, and yours does not go unnoticed.

I heard on CBC radio today that you have been addressing the wait time for diagnoses of autism, and the subsequent wait for early interrvention services. Early intervention services is a topic of great interest to me. While children in Newfoundland and Labrador do not have to wait for ABA services when first diagnosed, they do have to wait for speech and occupational therapy services. ABA uses programs based on behavioural modification, and while many children with autism have severe sensory processing issues, ABA is not the best first step to meaningful intervention. We cannot discipline from our children behaviours that are based on sensory input need, we need instead to give them proper exercises and input activities which will take the place of "troublesome behaviours."Also, there are families like my own who do not feel that ABA is the proper intervention for their child.

My son has Asperger's Syndrome, and my husband and I found that ABA did not address his individual needs. As our understanding of the autism spectrum broadens, there will continue to be more and more higher functioning autism, and Asperger Syndrome diagnosed. We too feel that our children deserve immediate, and meaningful interventions. Parents of children with autism often face tough choices in terms of their ability to have two parents working full time. Yet, the costs of having our children benefit from private OT, of private speech while painfully waiting for these services is not cheap. I know, because I have had to pay for them out of my own pocket, like many other families. We all want what is best for our children, so we make these sacrifices. But, they are sacrifices.

So thank you for your voice in autism advocacy, and I encourage you to look deeply into our current early interventions, and to see the gaping holes that us parents must traverse.I will be sharing this letter with my blog about parenting Asperger's Syndrome, listed below under my signature.

Warm Regards,
Natalie Dalton

http://myyellowapple.blogspot.com

Large black please.

Just when you think things are going good....whammo, you get a couple of bad days right in a row to put you in your place. The last few days have had their share of strife around here. My poor little guy's body is on bust. If you're familiar with sensory issues, you'll understand what it means to be on bust. If you're not familiar with sensory issues, consider yourself to live a very charmed life, at least on that front. ( I may write about it at some point, but I honestly don't know where to start.)

After a very long, very trying day yesterday, which involved one disastrous shopping trip, and one meltdown to end all meltdowns, and a baby sister whose nap got cut way too short....I never thought bedtime would arrive. But arrive it did, and I got to tell ya, Francis and I were some happy with ourselves to have survived the day! But...at 4 a.m. this morning, when himself came slinking into our room...I had no idea that he would be up for the day. But, alas, he was. What can I say? There's only so much you can do with no sleep. And I feel like I can handle an awful lot with the disrupted sleep that I get. But, no sleep? Just too hard. Just too painful. Just too true.

We get these nights sometimes, not all the time, but more often than I'd wish. You try going to work all day after being up since 2 a.m. Ouch.

It's funny, whenever I meet parents of kids with autism, we always ask each other two things...how they sleep, and how they eat. Every time. I am not the only mom to suffer like this. Far from it. I remember my own personal 'take back the night' campaign a few years ago, which involved ditching his nap, because if Aiden slept at all during the day, he'd be up til all hours at night.

So, I can hardly wait to hit the hay tonight. I'd better get down early, because God only knows what time I'll be getting up. No wonder I'm addicted to Tim's coffee.

Meltdowns vs. Tantrums

Just to clarify things, in my opinion, a meltdown and a tantrum are two different beasts. In all fairness, both are really hard to deal with, cause great embarrassment when brandished in public and make you question your decision to have become a parent in the first place! Although, if you're new to being humiliated publicly, you may find comfort in the knowledge that you do actually get used to it, and it is possible to reach that place where you no longer care what other people think! Honest.

Now, I don't want to give the impression that Aiden is constantly having public meltdowns, because he's not. BUT, when they happen, they're doozies! Like, awful. But, that's all in a day's work.

Back to my distinctions...and this is all opinion here folks, but I do believe I am right nonetheless. A tantrum, which can be thrown by any manner of child, old, young, typical, atypical..whatever....is usually a plea to get their own way. It is an attempt to outlast you,shame you, overcome you, possibly scare you...all with the ultimate goal of getting their own way. If their tantrum works...you're in big trouble, because they'll come faster, and more furiously in the future!

A meltdown however is when the child has actually lost all ability to handle their emotions. Whatever it is that is bugging them is now center stage in their life, and they just need to break free. Meltdowns can happen when they're overtired, overstimulated, overstressed, of over-anythinged. ( I think I just invented a word.) Aiden typically melts down when he has an idea that he can't materialize. For example, he has an image of a craft he'd like to make, but without Martha Stewart on site, it is just way beyond the realm of possible. Well, look out! There's no soothing possible, no nothing. The only thing I find that works is to take away whatever is agitating him, often by way of pulling from his abnormally strong grasp. BUT, when whatever has him overwhelmed is gone, instead of being angry, as he would be with a tantrum, he is almost RELIEVED to be freed from the stress.

Now, that's a meltdown.

And it's exhausting.

And it's a big part of autism.

We are Family

I honestly don't know how single parents do it. If you are a single parent of a child with autism, and you are reading this, give yourself a big round of applause. (Actually, if you're a single parent PERIOD, give yourself a round of applause.) Francis (my husband) is on holidays this past couple of weeks, and it is just soooo great to have that help. And, he's a good daddy. He's hands on, out in the yard with the kids all day kind of dad. Had you driven by my house last evening, he was the guy giving the kids figure 4 leg locks, pile drivers and suplexes on the front lawn. He's like the quintessential uncle, turned daddy.

What I like best, is that he is the only other person in the world who is in on this. I have family and friends I can talk to, but no one but him lives Asperger's Syndrome like I do. Nobody knows Aiden like he and I. Nobody. When other people are around, I always feel like I'm interpret ting behaviours, or always telling people what to do or not do around him. With Francis, he's already had the inservice.

When he gets home from work, Margaret will come running for hugs and kisses. Aiden will come running with tidbit of information from his day. He knows that Aiden wants the hugs and kisses too, I don't have to interpret.

Most importantly, he loves him. Loves him, loves him, loves him. He spends time with him. He accepts him. He has dreams for him. With all the struggles that Aiden may face, and undoubtedly will face, it comforts me to know that he has the priceless benefit of being loved and adored. No matter what kind of experiences he may have with bullying, rejection, loneliness (ouch, that is hard to write) he'll always have love here. Between the two of us, I hope we can give him the solid foundation of love and self-worth at home before setting him free in the world.

So, here's to a great dad. And a great guy. And here's to family!

But don't get me wrong...he still gets on my nerves sometimes....

Back to School

It's everywhere now. School supplies. Normally, the sight of school supplies sends my heart skipping a beat. I truly believe that one of the perks of being a teacher, is that you will always have the thrill of stocking up afresh for September. However, a recent trip to Walmart, watching a mom help her little girl complete her shopping list, left me feeling kind of sad.
School terrifies me. It really does. I just cannot imagine a scenario where my little guy can pass happily through its structured ways. Well, I can't imagine a way that he can fit the mold without fundamentally changing who, and how he is. I've been worrying about school since he was 2. Who will ever have the time to deal with his activity level in their classroom? Who will ever have time to learn all of the dos and don'ts of teaching children with AS? Who will have the time to link his learning to his interests, which is a vital step in maintaining his focus? Who will have the patience required? I do. I know that, but our goal is to head into grade one after this year of homeschooling. Unless he fundamentally changes in the next year, sending him to school will be paramount to putting my heart on a chopping block.
Part of my problem, I don't trust people. I tried to trust people with him in the past, and it did nothing but do more harm but good. I don't want to spend 13 years apologizing for him being who he is. I want to spend all of his years celebrating who he is, and working with it. But...
...and it's a big but...I want him to have the advantage of a regular childhood. I would love to see him hop on a bus and ride to school. To casually talk about kids from his class. All of those things that most parents completely take for granted.
So, I'm avoiding school for a year. I'm going to put all of my anxieties on hold for a year. I'm going to go it alone for a year. I'm going to hope for a lot to change in a year. I am quite possibly going to go crazy this year (the thing about going to work...there are other adults there!!!. For those of you who can't remember what other adults are..they're fully grown humans, who hold similar interests to your own. And, I'm going to make a fair attempt at enjoying this year.
And, I'm going to chronicle this year. So, if you're interested, stay tuned.

Autism is...

Autism is not being able to rest your arm on your child while cuddling him.
Autism is having to ask your boy to tell you that he loves you.
Autism is anxiety ridden.
Autism is life altering.
Autism is beautiful.
Autism is brutally honest. Brutally.
Autism is so very, very creative.
Autism is so in touch with the world.
Autism is spreading fast.
Autism is changing the way people interact.
Autism is affecting my family's life.
Autism is a community.
Autism is really, really interesting.
Autism is what makes me want to use my life.
Autism is inspiring.
Autism is what makes me proudest.
Autism is what scares me the most.
Autism is pretty funny, sometimes.
Autism is changing schools and work places.
Autism is very, very real.
Autism is making very tough decisions.
Autism is brothers, sisters, sons daughters.
Autism is only part of a person.

Up! in Smoke

Well, you can't blame a girl for trying. It was a rainy day here in St. John's (oh, I'll allow you a moment to reel in from the shock of that) so Aiden's morning soccer program was cancelled for the day. So I thought it to be the perfect day for us to try going to a movie. It's been on my "to do list" now for a while, and I've had it in my head to take him to UP! since May. Not that easy to arrange apparently. So, it being a weekday morning, i thought that now was probably a good time to go. The movie has been out for a while, so I expected the theatre to be quite empty. Which it was.
So, I packed up little Margaret, and sent her with my mom, and packed my purse to unforgiving fullness in prep for the movie. Any autism parent who reads this will understand...it's all in the prep, and in preparing for any manner of situation or request which might arise in a new situation. I had favourite snacks, apple juice (oh so important), a comfort item, the Z-Vibe, headphones for noise control...you name it, I probably had it. Well, it was all for nought. My first clue that this might not work out was by Aiden's lack of chatter on the way to the theatre....all parents know that quiet is never good. This was the tell tale sign of fear mounting. But the little trooper stayed with me through purchasing tickets (at airport style prices BTW), lining up for popcorn, and handing in our tickets, he played the game until the second we walked into the dark, LOUD theatre. "Actually, I want to go home now." he chimed in. I quietly beseech ed him to give it a try, the little guy begrudgingly sat up in his seat, and about 20 seconds later, with headphones of no help here, again pleaded his case.
So, I gave in, knowing that this bad experience means it may be years before I'll ever get him as close again.
But, tonight before going to bed, he earned a sticker on his behaviour chart for trying a new thing. Truthfully, I probably deserved a sticker too!

Pick Your Battles

Okay, this appears to be the true mantra of autism parents, and maybe all parents. You have to pick your battles. Because honestly, if you didn't, life would be a constant battle. And there are some days where you face a multitude of battles, none of which can be avoided, due to safety reasons, etc. But I got to tell you, it can be hard to know which to fight, and which to turn a blind eye too. (Luckily for me, I actually have a blind eye. Seriously!)

My yellow apple can find opportunity for creativity, and hence mischief if left in a vacant room with nothing but a gum wrapper. I swear that his creativity, smarts and boundless energy would ASTOUND you. Am I proud of this? Sure! I've learned to celebrate all strengths, and to try to focus on the positive. However, this kind of ability to use everyday objects in new and peculiar ways is not just amazingly creative, and distracting, but a little difficult to take on the road!

For example, once while in a hospital waiting room, Aiden took a pile of pamphlets off a table, and proceeded to shingle the roof of a plastic playhouse. Once that job was done, and mercilessly, we were still waiting, he took it upon himself to begin to install a new floor!

God knows I adore him, like ADORE him...but some days I am just plain exhausted. Seriously, wiped out.

So, now that my little babies are in bed...I think I'll enjoy a little me time. Roughly translated: time to do housework!

New to Blogging, and lots more

I fell kind of nervous. I know there's a good chance no one will ever read this, it may just be my own personal journal on the adventure I'm about to embark on. But, I promised myself I'd keep a running record, and here it is.
I have made the decision to homeschool Kindergarten for my little man, who's 4 and has a diagnosis of Asperger's Syndrome, which is on the Autism Spectrum.
At the end of his last Kinderstart session (a program where preschoolers attend school sessions prior to starting school in September) my husband and I had already come to the conclusion that our little guy was not ready for the high structure of school. The K. teacher assigned the Kinderstarters a label of red apple, or green apple, indicating which class they would be in. She looked at Aiden and said, "and you'll be a yellow apple". And so he is! Hence the name of this blog. Funny where we draw inspritation!
So, it is now July, and I am gathering resources and looking ahead to September, with lots of fear, and admittedly a little excitement too. I have decided not to work next year ( I am a special educator) which was a big decision, and to use my skills for my own little family. My boy also has a precious baby sister, 17 mos. I'm not quite sure how easy or hard she'll make homeschooling!

I guess I'll find out!