power tools : an unrequited love affair.

And now for something completely different. 

R and I moved into our condo just over a year ago. Although we did some work before moving in (floors, paint, general clean up), we always have at least a dozen ideas bouncing around in our pea brains of fun stuff (renos) we would like to undertake.

The vast majority of them are pipe dreams, as we just don't have the cake to make all our 'pretty' home dreams come true.  But, we have learned to become masters of craigslist and the supreme masters of the illusive 'deal'.  We start obsessing on whatever idea has caught our fancy and then we see just how cheaply we can make it happen.  If it is cheap enough, we go for it and if not, then it's tucked away in our little book of unrealized reno dreams (I promise we don't really have one these), and it's on to the next.

The last few months have seen us (that would be the royal 'us') actually DO some of these renos.  So fun.  We found a crazy deal on a new kitchen sink and a half way decent price on a sleek new faucet and then we sat on them for months.  You see, as much as I want to believe I am handy, when you get right down to it, I should not be allowed near power tools (or anything involving math, strategic planning or problem solving).  period.  They all do such wonderful things, and I love the shit out of them, but the reality is, they don't love me back.  I am a born accident waiting to happen and I lack the patience to take it slow and easy.  This all equals disasters, injuries and botched jobs.  So, I have graciously (not super graciously) admitted that R should be left to handle the technical type stuff.

A little background.  Rogan is a computer guy, but he is also ridiculously artistic and creative so my thinking is, he utilizes both sides of that brain of his pretty well.  R had never really done any home renos until we bought this place and though he was excited to give it a go, he was also a little hesitant.  It is much scarier to test the waters in your own pool than someone else's if you get my meaning.  Anyway, that was also partially why the sink sat unloved for so long.  R wanted to do the plumbing himself and it took a while for him to feel like he could do the job well.  I knew he'd rock it, but we all move at our own pace and find our confidence when the time is right.

Long story short, he did it, the plumbing is first rate and the whole thing looks amazing.  So proud. He has also built some kick ass shelves in our laundry room and his most recent bit of total awesomeness is the tiling in our kitchen.

I've been talking about a backsplash in our kitchen pretty much since we moved in but it was not a top priority as we do lead a pretty insane life on a daily basis.  A few weeks ago R and I were talking about the backsplash again and that night I took a little look see on craigslist. Low and behold I found the most outrageous deal on really beautiful glass tile.  We were smitten.  We went to see the dude and he had some other tile which we knew would be perfect for our shower.   We talked him down on price even further and voila....a new project was born.

R has now done about 75% of the kitchen backsplash and it is more RAD than we anticipated.  He readily admits that though he is enjoying it, tiling is not the love of his life.  R is a perfectionist, to a ridiculous degree, and finicky little 1X1 tiles are not terribly forgiving.  Once you place them, there is no going back, so you have to get it right the first time.  This makes for a cranky perfectionist.  Despite his stress and fretting, he has done a beautiful job.  We are both super stoked.

I will leave the story of the shower for another time, firstly because that project has not been started and secondly because in our haste to get such a great deal on the tiles, we failed to properly research just what ripping out all the tiles in your only shower entails. We are now well aware that it is going to be a difficult, messy, stressful, long and arduous process that will leave 3 stinky unbathed people in it's wake until completion.  Should make for a good blog post.  Stay tuned.  :)

Oh and just in case you think I never get my hands dirty around here, I'll have you know, I do all the painting, cleaning, organizing, decorating and supervising (not really), so there.  :P  Only love.

one of these things is not like the other.

It's been a little while since my last post so, here I am to update, wax philosophic, and despite my utter exhaustion, try to be a little witty too.   If I fail miserably at any of the above, apologies, it has been a long few weeks.  *warning* this post will likely not be light and fluffy.  This blog is about real life and our real life has not been super light and fluffy lately.  sorry.

We hired a Behaviour Consultant last week and spent two afternoons doing  Mylo's intake assessment with her.  We still have one day remaining this week and then she will create his Behaviour Plan of Intervention.  It is daunting, exciting, frustrating, long overdue and sad, all at once.  I find myself answering all the same questions I have answered a zillion times in the last few months and it never gets any easier.  It's a serious kick in the gut to answer 'no' to 99% of the the 'things' a toddler his age 'should' be doing and to see just how far behind he really is.  That is why we are here though, and why we are doing what we are doing, right?  So, eventually, we can answer 'YES' to those questions and thereby ease our chronic gut pain due to the constant kicking.

In other not so fabulous news, the babblefish has left the building once again.  I'm not going to get into it, cause it makes me hurt. I will say that Rogan is less fazed by the loss than I am, as he feels the sounds are wonderful, but still just sounds. He feels we are still not any closer, at this point anyway, to meaningful communication with his babble.  I know it's the truth, but those sounds just make me so damn happy.  At the very least, we got to enjoy them for a week or two this time, so for that I am grateful.

For the last 6 months we have been trying to get a Doctor, any Doctor, to listen to us about Mylo and his eating.  I honestly can't recall if I have written anything in depth in my blog about the alarming quantities of food this boy consumes, but believe me when I tell you, it IS alarming.  Not only the quantity he would eat if we let him, but the fact that we have NEVER seen him full, even after eating enough to make him ill. Not to mention the constant food-seeking behaviour and complete inability to self-regulate. We have to lock everything up and throw away the proverbial key in order to keep him from eating us out of house and home or literally choking himself.  Mylo and his food is a full time job!

So today we saw a Pediatric Endocrinologist.  If you are not familiar with what an Endocrinologist does, don't feel bad, I had no idea either.   Essentially they are hormone specialists.  They diagnose and treat hormone imbalances and problems by helping to restore the normal balance of hormones in one's system.  We were referred to one to determine if there was something hormonal going on with M that was creating the inability for him to feel full.  Or really, anything else they had up their sleeves, we just want some answers.

After some weights and measures that told us he is now in the 50th percentile for height and the 85th percentile for weight (this is not such a good thing in their eyes) and a gazillion questions from the Endo fellow, we seemed to be no further ahead.  Then we saw the actual bigwig Dr. and she had some ideas for us.  To my chagrin but not to my surprise, they involve more specialists.  A referral to a Geneticist and an Ophthalmologist in order to test for and rule out various genetic syndromes that could account for his symptoms.  I like that they are being proactive and wanting to rule out anything physiological, THAT is what we have been trying to get someone to do for months now.  But in the end, it seems highly likely that it will come down to it being a behavioural issue. One which we will be have to try to teach, reinforce and in some cases undue new behaviours surrounding food.  What's one more challenge though? 

Our day at the hospital ended with a blood draw.  Picture me, Rogan and two nurses struggling to keep one little toddler still.... man that kid can fight!  It's a good thing too, we need us a fighter.

On a fun note, I totally sold out and got myself an iphone (only cost me $20!) and now I have gone hipstomatic crazy.  I just can't stop myself.  Be prepared for complete photo inundation.  Only love.

babblefish

It was the best of times, it was the worst of times.  Man, it has been a roller coaster couple of weeks. A recap is in order.

beauty

Three weeks ago M and I started on the GF/CF diet.  Overall it is going fairly well, though we are having to do a lot of fine tuning and elimination to pin point the foods that agree and don't agree with his gut.  As a result,  we have had countless full on meltdowns and days long tantrums, to the point of making the 'Hail Mary' decision to take M to the ER at Children's hospital (a fruitless, humiliating and disheartening experience which I may or may not write about at another juncture).

We switched him from high dose fish oils to a pure cod liver oil, as, after careful research we found much evidence that it was a key factor in biomedical improvements in ASD.  As a result of both dietary and supplement tinkering, we have seen marked improvement in eye contact and M is now 'asking' for our help, which has never happened before.  He holds his hands out so we can take them and help him to do whatever crazy stunt he has planned.  There are many.  The poor bugger has already had two major face plants this weekend alone, one of which has left a massive red and abraded goose egg in the middle of his forehead.  You will see it in all it's glory in the video below.

What else?  My boy spontaneously decided to tackle walking up stairs, unassisted, and not on all fours.  Just sorta happened and lord was it magical to see.  We were so proud, so in turn he was so proud.  It was just a big mess of pride and glee.  He didn't face plant doing it either.  :)

I have saved the very best for last.  A little back story on this if you'll oblige.  I picked up one of Jenny McCarthy's books at Value Village out of morbid curiosity and perhaps with the vague hope that I would discover something useful in her experience with ASD.  The forward of the book is written by a Pediatrician who's son is autistic. He implemented all sorts of biomedical strategies to try to help him.  I am paraphrasing here, but the gist of one paragraph was something along the lines of  "We started him on the GF/CF diet and right away eye contact returned.  Then we started him on cod liver oil and within days we saw the return of language."  Being the gross skeptics that we are, as I read those words to R, we both scoffed mightily and agreed, if only it was that simple.

I am not saying I should stick both my feet in my mouth here, but what I am saying is, a week after starting M on cod liver oil, we have the return of the babblefish!  So, you be the judge.  Dadadada, didididididi, babababa....well, you get the point, sounds we have not heard for over 6 months have resurfaced.  Hallelujah.  It is the most beautiful sound I have ever heard.  I must try not to get too worked up over it though as this marks the third time his dadadas have come and gone in his short life.  I want nothing more than for them to stay forever and continue to progress, but I have to be cautiously optimistic instead.  Mylo continues to amaze us everyday.  We are so lucky.  Oh and props to Jenny McCarthy even if she is a bit of a douche.  Only love.

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.

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 women.....you 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 http://www.autismspeaks.org 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.

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 all.....now 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?)
                                                                                                                                                        

poo poo

I haven't yet talked about my other kids and I think they deserve their fair shakes on this blog too.  After all, they were here before the Mylo and have put up with going from lavish amounts of attention to virtually none (well not really) since he showed up.

Allow me to introduce Beatrix (Bebe for short) and Ozwald (Ozzie for short).  They are a very fat, orange female cat with a pea-sized head (compared to her body) and a very snugly, most probably partially blind and exceedingly dim-whited bearded dragon, respectively.

As you can see, they hang. They even cuddle.  Bebs does enjoy a good game of chase on the rare occasions that Oz is out of hibernation long enough to scamper around the house.  And yes, when he is awake (approx. 4 months a year) he is generally free to roam, or used to be anyway.  Enter Mylo.

We used to have another little girly in our household too.  She now resides on a lovely island with my nephew and his family.  Baby gurl is an albino corn snake.  We got her as a teeny, tiny little wormy thing, all pink and beautiful with red eyes.  She is awesome and now in and around the 4- 4 1/2 foot mark.  We made the executive decision to gift her to Finn (the nephew) as we realized we just had way too much on the go in terms of other beings to take care of.  It's cool, we still get to see her when we go visit.

Let me now get to the meat of this post.  I have a small problem.  One which I am certain Mylo will take major issue with in years to come.  Thankfully the animals don't know or care or, if they do, they aren't saying.  It's my 'pet' names. And by pet names, I mean terms of endearment and, I suppose in this case, coincidentally, also the names I call my pets (and kid).

my husband bought me this stuffed poop.  Telling?

Inexplicably, they all seem to have something to do with bodily excretions.  I know, totally gross and weird, I'm not denying it.   For example, the lizard has long been referred to as Poo Poo boy, in fact I think that is pretty much his given name now.  Then Bebe came along and somehow she has been christened Pee Pee Girl.   I'm talking like this is what we call these poor animals every day.  Again, they don't seem terribly bothered.  I guess we can likely get away with this new nomenclature for the animals permanently...but what about for Mylo?

It's true, a largish selection of our pet names for him also have something to do with poo.  I'm not going to get into them, for fear of irreparably scarring my child in the future, but suffice it to say, I had better start working on some more appropriate names, pronto.  Seriously, am I the only one? Tell me there are more of you wierdos out there who have a passing preoccupation with poop.  No?  Ok, it's official, I'm a freak.  My poor kids. Only love.