Wednesday, November 18, 2009

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 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.

Thursday, November 12, 2009

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.

Wednesday, November 4, 2009

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.

Tuesday, November 3, 2009

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.)