mustard sandwich

Sometimes something strikes me as so brilliant and hilarious that I find myself giggling under my breath for days.  Typically, it's Rogan that precipitates these episodes.  That man, though he generally hasn't a clue what he's said that gets me laughing hysterically, never fails to find my funny bone.  Thank gawd too, laughter is mostly the only thing that gets me through.

I wanted to tell you about just such an occurrence. It happened 2 days ago.  I am still giggling my ass off over 48 hours later.

It needs a little back story.   When we first got our diagnosis, someone gave me a Jenny McCarthy book. I'm not going to get into the 'Jenny' debate here, but I will say, despite all the controversy surrounding her, that book did get us started on the biomedical path, so for that I'm grateful.

The introduction to that book was written by a Dr. I think, who spoke about his experience with his ASD child.  And of course, being the horrible cynic that I am, the one thing I took away from that blurb was the bit where he said, entirely seriously and honestly, something to the effect of, 'and then we introduced fish oil to his diet, and within days he went from being non-verbal to speaking'.  I may be engaging in a bit of hyperbole here, but it was along those lines.   The first thing I did when I read it was run to Rogan and read it back to him.  We laughed and cracked jokes as we tend to do with everything, not because we didn't believe it had happened for him or for others, but because sometimes, it's just hard to imagine something so simple creating such a HUGE difference.   And of course, we had already started getting the comments from people who had read an article or had heard from a cousin's brother's friend that 'insert thing' was THE answer for their ASD child.  Rogan and I refer to those 'things' as the 'silver bullet' and lots of families find theirs.  I think we are probably still so cynical and jaded, because we have yet to find ours (and man have we tried).

Now for the meat of this post. (I have a feeling I'm going to write this out and then realize that no one gets it or cares or even thinks it's funny. oh well, too bad.  I do.)

So, we're driving in the car and I remember that my friend had left me a voice message earlier in the day with an incredibly sweet story about a friend's ASD kiddo who is entirely non-verbal but spontaneously sang a song he heard on the radio.  I thought R would appreciate the story as much as I did.   So, I enthusiastically say to him, 'Oh I forgot to tell you, (friend) called and left me a message today telling me about her friend's son with autism'.  I think he could tell by my excitement and smile that it was a heart-warming story, and so, before I could even get the first word out, he looks at me and says...."yah I know, mustard sandwich, long story short, completely verbal.'    Holy shit, I laughed so hard, for so long.  And now you know, in case you don't really know us, all about our twisted sense of humour.

The moral of this story is two fold.  The first fold is that my husband is the funniest dude I know. The second fold is, it's ok to laugh at your reality, in fact I think it should be mandatory.

long is the road.

Yesterday was a hard day.  M's first day of pre school.  It went almost exactly as well as I feared.  I walked in with cautious optimism and left with a purse full of snotty kleenex.

Let me preface this post by saying two things.  First, I love and deeply appreciate ALL my people. regardless of whether you are a close personal friend or simply a facebook acquaintance, your support of my family through words, actions or thoughts is immeasurable and something that truly helps me get through a lot of my days.

Second, it's important to note that EVERY human with ASD is different (in so many ways) than every other human with ASD. period.  It is simply impossible to characterize or compare one ASD experience with another. Just as it is impossible to compare a typical experience with an ASD experience.

And so, having prefaced that, I need to talk about our reality again. OUR specific ASD reality.   I know I have talked about Mylo being non-verbal in other posts and the difficulties navigating that world. What I now realize I haven't really talked about in my blog or to many people who actually know us, is M's inability to understand what we are saying.  I say inability, but I don't know that to be true.  perhaps he does understand us, but is so far ensconced in his own world that our words don't register.   Whatever the case may be, we can talk and request and discuss until we are blue in the face and he does not hear or respond to us in any way.

What do I mean exactly?   If I ask Mylo simple everyday questions like, where is mommy?   Or can you please bring me your shoes?  Or where ARE your shoes for that matter......he doesn't respond, he doesn't pay any attention to us at all.  He never has and that doesn't appear to be changing. For example,  I have no idea if Mylo knows what or where his hands are, if he knows what a cat is, or what or where his daddy is.   Can you imagine for a moment how difficult it is to have a child who can not communicate with his voice but also has no real receptive language abilities?

How do I make him understand that pre school is not a punishment, that he doesn't need to scream and bite and try to escape?  For now, the answer is, I can't.  I can only hope you are all right in saying it will get better with time.  But, and here's kind of the main point of my post,  please do me a favour friends, in trying to make us feel better about days like this, try your best not to compare, normalize or minimalize our experience(s),  it just makes our reality that little bit harder.   Spoken with gratitude and only love.

an update. with a side of raw.

hazy days before parenting

What did I imagine in those hazy years before parenting, before autism, before this new life was thrust upon me?  Probably the same as all of you imagined.  Giving birth to a chubby little person, nurturing them, loving them, watching them grow, being excited for every new (and expected) thing they learned or did.  In my mind it was all mapped out, it would unfold just as it should.  And, it has.

No, this life is not one I would have chosen, if someone had given me the choice. But there it is, we weren't given a choice.  What we were given, was a little boy who's whole world is unique, from the way he perceives light and sound and touch, to the way he interacts with his environment and those in it.  What we were given was our son, we were handed our hearts.

What we WEREN'T given was a guide book, a rule book, a stick by which to measure progress, regression, sadness, heartache and break, anger, or uncertainty.   Here I am, over a year since my last post and I am still almost utterly adrift in a sea of 'holy shit, this is my life?!' and 'holy fuck, I have no idea what I am doing, or how I can keep on doing it!'.  But every day, I wake up, or am still awake, as the case may be, I put my ASD mommy panties on and forge ahead.

What's happened in the last year?  SO DAMN MUCH and SO DAMN LITTLE.

Mylo has now been doing his ABA therapy for about a year and a half.  Sadly, for the first 8 months or so, we were caught in the trap of the center based approach.   It was not a great experience (with the exception of our beloved BI Jen, who has only just left us last week, insert sniffle) but we were so uneducated, scared and emotionally raw that it was the best decision for us at the time.   In December, we wised up and realized that building our own team was really the only way to have the control over both our people and our budget, even though it meant a massive amount of work for us.  We now have 6 people working with/for us on our ABA team, which translates these days into 1-2 hour sessions daily from Monday to Saturday and starting next week, we'll be adding in double sessions on 2 of those days and a morning of pre school.  On top of all that, we have his weekly OT, Naturopath and chiropractic appts outside of the house.  I am officially my kids' chauffeur, just not in the way I had envisioned.

our love

So what does all this mean?  Does this mean that Mylo is flourishing, sailing through his therapy, talking up a storm, playing with other kids, calling me mom?  Yes to flourishing, No to the rest.

I think it must be hard for any parent to see the daily, weekly or even monthly changes in their kids, and the same holds true for me.  I know Mylo is changing and growing and making huge gains, but some days I have my autism coloured glasses on and everything looks pretty shit.

Today, at 3 years and 2 months, Mylo remains entirely non-verbal.  Non-verbal for us doesn't mean he has some words but no full sentences or that he will echo what we say. For us it means that he has no words at all.  Not even mama.  The good news is, we have seen huge progress in his ability to imitate sounds and he can be pretty chatty with the ones he does have. :)

Mylo doesn't play with other kids, Mylo doesn't play with anyone really.   He is a sensory being, fueled by the need for input from his environment, much like we all are, only hugely amplified.  He spends his days self-stimulating (stimming) with sounds, sights, touch and taste.  It's not a world we yet understand and not one that makes our boy happy all the time, but Rogan and I spend every second of every day trying to make this world a place he can one day feel comfortable in.

There is so much more to say, but I think this sums up the gap for the moment.  Our life is hard, but it's also so incredibly full of wonder and joy at the smallest detail, the smallest achievement.  I'm not sure that is something that every parent can truthfully say, that they live in the mirco.  We live and love there.  Till next time. Only love.

wuv, twoo wuv.......

I should blog.  I haven't blogged in well over a month.  A whole bunch of stuff and things have happened and they should be documented.  But right now, I'm tired, I'm pretty disheartened about some fairly personal things and I don't want to end up spewing negative vitriol all over the page. 

Instead I will say this:  The Mylo turned 2 a week ago....I have a 2 year old now (what?).  The Mylo is rocking his therapy like nobodies business.  The Mylo is my heart and soul.  It's TWOO WUV (if you haven't seen the Princess Bride then a) I have to wonder what rock you've been living under, b) GO WATCH IT NOW and c) you won't get this reference.  

photo courtesy of Reece Penney <3

That's all for now.   Only WUV.

conflagration, flagellation, demarcation

Oh life, how you endlessly seem to get right in the middle of all the other things I intend to do.  Case in point, blogging.... it always seems to get shunted to the back burner these days.  Perhaps or maybe even likely, with very good reason, but none the less.

Just so there is no confusion, fright or head-scratching, the title of this blog just happens to be three words in the English language I have always been fond of.  Not because of their meanings, per say, but simply because they sound cool.  So not to worry, there will be no uncontrolled blazes, no floggings or beatings and as far as I know I won't be creating any borders or boundaries around anything specific just now.  You can all breathe easy my friends, nothing to see here.

It's been over a month since I last posted and I suppose a ton has happened.  Where to start and what to include, that is the question.  As per, I think most of the big news or new news revolves around the Mylo.  He is, after all, the centre of our world and the one who demands most, if not all of our attention, time and energy.  Not complaining, just explaining.

The last month has seen the eventual co-operation of a few doctors into the big mystery of Mylo's eating.  We got in to see an Endocrinologist who referred us to a Geneticist, and an Ophthalmologist.  So far, we  have not seen either, though we have an appointment date for the Geneticist and I think it is even next week!  Will wonders never cease.

 A week after seeing the Endo, we were back at BCCH to see his Neurologist.  I had my doubts that she was going to do much for us, as the last time, she really just blew us off.  I like being wrong.  This time she was beyond thorough.  She ordered so many tests, I think she even got confused.  Again, sometimes it is good to be wrong.  Everything has been expedited to bypass the year and two year waitlists for EEG's and MRI's.  His EEG (which incidentally, we found out yesterday is normal)  was done 3 days later, and this Friday he goes in for his MRI and *cringe* lumbar puncture.  Apparently, there are a few rare conditions that could be the cause of his symptoms (though very unlikely) that can only be tested through cerebral-spinal fluid.  ouch.   Miss Neurologist figured that since he would have to be sedated for the MRI anyway, we might as well kill two birds with one stone (not sure I like my phrasing there....too superstitious).  Reluctantly, we agreed.

It all scares me but, I'll deal.  What I'm not sure how to deal with or handle is the fasting before the test.  No food after midnight.  Only water, apple juice and popsicles 6 hours prior and no liquid three hours prior to the test. I mean come on, have you met my kid?  Are we not doing these tests because he eats 24/7 and is never, EVER full?  You try telling this non-verbal, food-seeking, wake up at 4:30am toddler he can't eat or drink for hours on end.  The test is not until 10:45am. 4:30am. 10:45am.  Need I say more?   Please send us all your good vibes on Friday. R and I will be in our own private purgatory.

The tests continue and we cross our fingers that we either find a cause and solution or that we rule everything out and get down to the nitty gritty of treating his issue as behavioural and focusing heavily on it during his therapy sessions.

Speaking of his therapy sessions, we have found a BI ( behaviour interventionist)!  It took a lot longer than anticipated to get all of this going, but the wheels are in motion.  Last week was her first week with M and she spent two days 'pairing' with him.  In lay terms, this means she played with him and worked on gaining his trust and his friendship.  As far as we can tell, it worked.  She spent an hour and a half with him both days and R and I stayed upstairs.  He was a  superstar and they had a ton of fun.  Tomorrow, his BC and BI will overlap and hopefully lay some groundwork for the actual therapy to begin.  Can't wait!

The last little tidbit I want to share is that three days ago the babble spontaneously returned, and not in any small way.  There were so many dadadada, dididididi, dadeeee's, we didn't know what to do with them all.  Not a bad problem to have really.  Today I thought we'd lost them again, but this afternoon that sweet, sweet music to our ears resurfaced.    It excites me and it thrills me and I can only hope that he shows off his mad skills to his therapists tomorrow so we can  build on it and never lose it again.  only love.

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.