Friday 30 March 2012

groundhog day. you know what today is? it's tomorrow.

Just pretend it says 4:30am, ok?  I really dig this clock.
♫ Then put your little hand in mine.  There ain't no hill or mountain we can't climb. Babe. I got you babe..... I got you babe. ♫

I'm sure we've all had weeks in our lives where we felt like we were on repeat.  Despite small shifts or subtle changes in routine or people, things seemed eerily similar from day to day.  And then they didn't and things went back to normal (whatever normal is). Everyday now, I wake up and wonder if things are back to normal.  But every day, I wake up, and  life is still stubbornly stuck on repeat.  For us, Autism has sauntered in, staked it's claim and decided that here, in our world, it's groundhog day, all day, every day.  THIS IS the new normal.

I'm not saying I hate it.  I am after all one of the world's biggest creatures of habit and schedules make me happy.  What I am saying is, it isn't easy.  We now live and and die by My's schedule, M's routine, M's needs.  Yes, any and every parent does too, we are certainly no exception.  There is, however, absolutely NO margin for error with him.  M is a-ok with changes, he adapts well to new environments and is not fussed by people anyway, so adding new peeps to his surroundings doesn't phase him.  The truly defining aspect's of M's life are simply food and sleep.  And lord help us if we don't get the sleep part right the first time, we'll spend weeks picking up the pieces.

Sleep.  sleep, sleep sleep.  Maybe if I keep saying it, more of it might be had around here.  It is a precious commodity indeed.  Our groundhog day starts pretty much every morning (if you can call it morning....we certainly don't) between 4:30 and 5:30AM. Yes, you read that right, AM.  4:30am seems to be the magic number in the last few weeks.  And once M is up, he is UP.  There is no getting this boy back to sleep.  So our day begins and follows the same routine, the same schedule, the same sameness right up until 7pm when, after he goes to bed, our 'alone' time seems to follow a pretty similar trend.   Man, are we lame.

see?  fun stuff!
I hope I haven't given you the impression that I never do anything with M or take him anywhere.  On the contrary, every day I take him as many places as I can force my sleep-deprived body to endure.  We do tons of fun stuff, but all within the strict confines of his sleep (and to a lesser degree food) schedule.  I can't even begin to tell you how many times we have had to explain to people why it is we can't just pick up and spend the day doing something or going somewhere with them.  Honestly, even when we do explain it, there are not that many folks that can truly grasp  the idea of being married to a kids sleep needs (if only divorce were an option here...I kid....sort of).

don't drive angry!
My point.  For us at least, Autism has reshaped not only who we are and how we view ourselves, but it has reshaped our days and nights.  Days meld into one another, without a hell of a lot of variation.  Weekends?  What weekends?  It's groundhog day, all day, every day.

I guess I just wonder and suppose hope, that with the introduction of M's therapy (which we are steam rolling ahead on...YAY US!) things may start to look a little different from time to time and maybe, just maybe, we won't wake up today and have it already be tomorrow, or yesterday.  Only love.

Sunday 25 March 2012

blog block be damned.

Remember me?  I did such a fabulous job of blogging for the first month and then, as seems to be a common theme in my life, I ended up becoming somewhat less fabulous.   I attribute it to 'blog block', which in my eyes must be akin to writers block.  But really, I think I just haven't had much to say or perhaps lacked the inspiration to say it if I did.

What's been happening?  I guess a lot really.   After nearly a month and a half of waiting, our funding agreement finally arrived.  Are we excited about this?  Yes.  And no.  Yes, because this means we can now officially start hiring therapists for Mylo and get this 'early intervention' program show on the road.  No, because seeing the funding figures first hand has also served to shine a glaringly, bright light on the funds we will not have, emphasizing the services we won't be able to access for Mylo.  It's a good news, bad news kind of thing but for now lets just focus on the good.

We start interviews this week to find M a Behaviour Consultant (he or she will be our main 'go to' person for assessing and setting up M's therapy and intervention program.   And, if we go with an agency type set up,  they will also help us to find, interview and hire Behaviour Interventionists to work with Mylo and implement his therapy program).  We are seeing two this week, both of whom are female.  It's the strangest thing, and don't misunderstand me, I'm no woman hater, but I just have this overwhelming feeling that Mylo's BC should be a male.  I can't really explain why, just a gut thing.  Even stranger is, I told R I wanted to look for a man and he didn't even really question it, or my reasons for feeling strongly about it.  I think he may feel it too.  *insert twilight zone music*   Anyway, the field seems to be dominated by know we are the nurturing ones after all...ha!  But, I will keep looking and insisting and if our BC is meant to have a penis, then it shall be so.

Also in the good news, couldn't possibly be better news department is, that our little rockstar can now fully spoon feed himself.  It's a HUGE deal.  He's a HUGE deal.  It has taken much practice and perseverance but he's got it!  Granted it is a little backward and awkward looking but who cares, the focus, intent and sheer love of food, get the job done.  Video proof attached.

Lastly, I want to bring April the 2nd to your attention.  Yes, it is the day after April Fool's Day, but all silliness aside, it also happens to be World Autism Awareness Day.  WOOT!  That's right folks, on that day, people affected by Autism, be it personally, or through someone they love, are going to LIGHT IT UP BLUE for Autism awareness.  Have a look at for details and to see just how vast a reach Autism Speaks has.  We are lighting our home up blue on April 2nd and our local Family Place, who know, love and support Mylo are going to participate as well.  I think that is pretty RAD.

Awareness is the first step to opening the eyes, hearts and minds of the world to Autism and it's epidemic proportions.   As a mom touched and affected by it daily, my heart encourages you to LIGHT IT UP BLUE too....even if it's just something small and personal.   Mylo thanks you.   Only love.

Friday 9 March 2012

people who speak in metaphors outta shampoo my crotch.

teeny baby Mylo, crying cause he wanted to,
I know everyone likes a feel good, positive, make you smile blog post.  So do I.  But sometimes, I just don't have it in me.  I have been procrastinating a new post for days now as I was waiting for some magic 'happy' circumstance to write about.  So far.....nothing.  Then tonight I just figured, hey, this is MY blog, it's about how I feel, so I can actually write whatever the hell I want to, right?  Kind of  like, it's my party and I'll cry if I want to.  Wow, really not so dissimilar when I think about it.

I don't have anything super specific to talk about, just a mishmash of stuff and things, happenings and not so happenings that equal our life.  To be blunt I  have been feeling pretty down and shitty of late.  I am feeling wrung out and exhausted and have been putting off doing important Mylo things because they scare me.  I SHOULD be interviewing and choosing a behaviour consultant right now so we can get M's therapy going, but we still have not received our funding agreement.  I suppose I am using this as an excuse (as I know the funding will eventually show up) because this particular task makes me feel inept, undereducated and entirely ill prepared.  

I mean come on, here's how it looks:  Hey parent of newly diagnosed autistic child!  We know you know next to NOTHING about this disorder, we know you are scared and sad and overwhelmed, we know your life just shifted completely on it's axis.  BUT, now you have to research, interview, hire, and manage your child's therapy/therapists, funding, bookkeeping and general well-being. AND you must do this all while still maintaining your 'other' life, taking care of your child and your family and keeping your sanity.  No Big deal, so get on it would ya?  Ok so I might be paraphrasing a bit, but you get the point.

It IS a big deal and one that makes me crap my kilt on a daily basis.  Hence forth, I have not made the calls yet.  I have made the list, but picking up the phone seems to be a gargantuan feat, which I have yet to come to terms with.  Blah, blah, blah, poor me, I know, total pity party.  Sorry, it is just the simple truth of what I have been feeling.

Alternately, I have also been feeling pretty elated with some new stuff M has been engaging in.  He has started putting things away.  My dream come true being the anal retentive, ocd, neat freak virgo that I am.  Not everything certainly and not even often, but enough times that it has made an impact on us.

saggy ball boobies in the pit.
We've watched him put balls back into his ball pit (along with many other things non ball related, the ball pit seems to be a repository for everything now), put his puzzle pieces back into their bin and just the other day, I watched something that blew my mind.  He likes to empty out my bin of baking supplies because they are accessible and he can.  So he pulled out my new box of disposable piping bags which came with three little plastic piping nozzles attached to it.  He systematically pulled each nozzle off the box, examined them and them put them back into the bin!!! If that wasn't enough, he then put the box of piping bags back in as well!  I know this may seem like no great shakes, but for us it is massive and we danced a jig of joy around the kitchen.  Colour me proud Batman!

Ok so I just managed to cheer myself up writing that, yay me!  I should also note that M had a play date with his first autistic pal today.  It was wicked awesome.  They totally ignored each other, did their own things, didn't have freak out meltdowns and both C's mom and I figured they just knew what each other was about.  It was really beautiful to watch.  Also cool is that C is a little older than M and was diagnosed almost a year ago .To see the progress she has made and imagine that M will be doing those things too makes my insides turn to mush and my soul sing.  I am so happy to have met C and her mama.  It turned out to be a great day after if only M would sleep past 4:00am.  Only love.

sidenote*  blog title is another movie quote.  Relevant to this blog post in any way?  Nope.  Funny?  Hell ya!  (do you know the movie?)