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.

  

it's all gone Pete Tong

Mylo had a little playdate today with his pal C who is right around his age and pretty fabulous. M mostly ignored him and his lovely hugs, but that is to be expected.

I hope there will come a day, soonish, when I stop aching and feeling like I am in a slow, downward spiral after spending time with normally developing toddlers around M's age.

I LOVE this age.  How many 'firsts' can you cram into a time period without your head exploding from the sheer joy of it all.  I know what Mylo should be doing now, even though I also know that, disability or not, every little person grows, learns and develops at their  own pace.  It doesn't really make it easier knowing.  And no, before you ask, I do NOT begrudge, hate on, or otherwise feel angry at parents of NT kids. I do, however, envy them.

I envy them all those 'firsts' that come along in and around where they should, the way they get excited by new things, but not jump up and down, shit your pants excited, like an ASD parent does when their child gives them more than 5 seconds of solid eye contact.  They get excited because they have been expecting the next big 'thing' to happen and don't have to wonder for too long if and when it will actually happen.   I guess you could even say I am a little jealous.  Can you really blame me?

But again, I stress, in no way, would I EVER want any of my mama (or dada for that matter) friends to think I can't handle hanging out with them or their kids.  It makes my heart sing to watch M's little friends chatter away, hold their mama's hand, use a spoon or play (appropriately) with a toy.  How could it not, I love those kids (and their mamas).

It also makes my heart sing to watch my sweet boy do the things that HE loves and that HE knows how to do.  I am trying to find a way that I can mesh the two and come out on the other side with a little less bruising around my heart.  It is lesson in acceptance on a few different levels, and one which I am sometimes struggling to learn.  Please bear with me.  Only love.

learning to be comfortable being uncomfortable

I've had a few other blog post ideas rolling around in my head this week but I've decided to put them on the back burner for the moment so I can take this opportunity to express my gratitude, thanks, love and WOOT WOOT for some very special people.

I'm sure most of you that actually read my blog have seen the facebook page that was set up yesterday for Mylostones.  This was not my doing.  A few amazing women in my life took a step back, assessed the situation, recognized our need and then did something about it.   wow.

First off, I will say that it blows my mind, the selflessness, the kindness and the plain old fashioned love that I have some how acquired in my life. Most days I don't feel very deserving of such things but today, I honour these women and thank them for myself and for my husband and most importantly for the Mylo.

I do have to be frank though, as you knew I would.

The fundraising, the putting ourselves out there, the admission that we need help, it all makes me pretty uncomfortable. It kind of feels like admitting defeat or admitting we are not doing a good enough job. Not that I wouldn't do it for a friend in need in a heartbeat, but it just feels very different on this side of the fence.  I've done some serious introspection over this, in fact, I spent most of last night awake, agonizing over whether this was the right decision.   I still don't have a solid answer to that question, but what I do know is this.

us three. love.

My son is the single most important aspect of our lives, we would go to the ends of the earth and back if it would mean vanquishing his symptoms.  We will fight for him, we will learn for him, we will sacrifice for him and I will bloody well learn to tolerate feeling uncomfortable for him.  So thank you, one and all for supporting us, for listening to us and for loving us.  We have only love for all of you.

desperately seeking sensory....(any movie buffs get the reference?)

Disclaimer:  Rogan tells me this post is kind of 'technical' though informative.  Apologies if it is too 'technical', they can't all be winners.  Maybe you'll get something out of it and maybe you won't.  At the very least, you'll see another cute video of the Mylo.
 

I'm continually told by other moms (with neurotypical kids) that it's a 'toddler' thing.  Fair enough.  I'm sure that lots of Mylo's behaviours and obsessions can and are attributed to the vast majority of NT toddlers.  I also know that my son is what is known as a 'sensory seeker'.  In many cases something called SPD or Sensory Processing Disorder goes hand in hand with an Autism diagnosis. There are conversely many small and large humanoids alike who only suffer from SPD on it's own.  After learning about it early on in our ASD journey, I realized that I almost certainly fall into this category, though on the opposite end of the spectrum from Mylo.

To outline in it's entirety exactly what SPD is, with all it's various subtypes and categories, would take me writing you a small book on my blog. I have neither the time nor energy to do that .  So, to simplify, lets just talk about the 3 subsections of the first category of SPD which is Sensory Modulation Problems. (confused yet?)  Sensory modulation problems pertain to how a child regulates his responses to sensations.  The three subsections therein are sensory over-responsivity (overstimulated or easily upset by sensory sensations),  sensory under-responsivity (pays little or no attention to even 'in your face' sensory sensations) and sensory seeking (wants MORE of everything aka, Go Big or Go home, aka. adrenalin junky!)

just a cute pic of my boy.  :)

I have discovered that at least in Mylo's case, he falls into both the under-responsive and sensory seeking categories depending on the sense in question.  I, on the other hand, would place myself firmly in the over-responsive camp.   I have major texture, taste and smell issues. They can often make me feel ill under the right circumstances.  I can't handle really loud noises (which is why I rarely, if ever, go to the movie theatre.  How do you movie go-ers not go deaf?) I could go on, but I should try to get to my point right?

Mister Mylo is a big time sensory seeker but can be highly under-responsive as well.  He LOVES loud noises, would play in traffic comprised entirely of loud, brake screeching big rig trucks if we let him.   He will eat virtually anything on the planet (with a few exceptions) super spicy?  No problem!  Spicy food however, falls more into the under-responsive category in the same way that I am not sure he has EVER responded to a smell, either good or bad.  It almost seems like he doesn't use his olfactory sense at all.  Again, I could go on and on about Mylo and his sensory stuff, like how he has to put his mouth and ears on EVERYTHING but the whole aim of this post was to get to this video of him and his new favorite thing.  I will leave the rest for another post, another day.

In the last few months all he wants to do is climb.  Climb on every surface, no matter how unsteady, and then use that surface to climb onto something even higher. The climbing seems to satisfy his vestibular and proprioceptive sensory needs in a big way. His dad and I have multiple coronaries daily just trying to keep him off of everything.  This is definitely a 'toddler' and I'm told, a 'boy' thing, but it is also a sensory seeking behaviour for him. He has NO FEAR at all and once he's tried something, realizes it fulfills one of his sensory needs, he will keep going back for more, despite the often times painful consequences. It scares the shit out of me, but it also amazes me. He has unwavering trust in what he is doing, every time.

The video shows his new favorite pass time of couch diving.  He spends good chunks of his day engaged in this activity and simply trusts that his landing will be soft and hilarious each and every time.  Of course sometimes it isn't, and there-in lies the problem (for us anyway!)  But just imagine having such blind faith that everything is going to work out just the way you think it should and want it to.  I only wish I had a tenth of the trust and faith my little sensory seeker has....life would be a lot less stressful and a lot more fun.  Enjoy the show.  Only love.

my STIMMY little Valentine and the whats ifs...

It's Valentine's Day!  So what.  But really, although Rogan and I have never gone in for this consumer created and fueled 'holiday', this year we both, separately, decided to acknowledge the 'love' day with a card for one another.  Yay us and our super awesome mind reading powers.  I thought I would share the fabulous display of love my husband CREATED, yes created during the last week in the few hours he has to himself without me cramping his style. You don't even need to tell me how RAD this card is, I already know.  I have felt very special all day as a result. 

It has been nice to feel loved and special today as the last few weeks have really taken a toll on me.  It's funny, in the months leading up to the diagnosis, I spent most free moments learning, researching, obsessing, if you will, over what was ahead for us and Mylo.  I was WAY ahead of the game for sure.  On the other hand, Rogan was happily playing ostrich.  You know, the lets bury our head in the sand and pretend it's not happening kind of thing.  I don't begrudge him that, though at the time I felt a little solitary in my need to procure any and all info. about autism and how it pertained to Mylo.  I realize now, it was the way he needed to process what was going on, just as, to get through it, I needed to learn.  Following the diagnosis however, our roles have completely reversed and shifted.  I have found myself with my head firmly planted in the sand, not wanting to read one more thing about autism and feeling like I don't have the will to embark of the next stage of life with the big A.  Whereas, Rogan has shifted into high gear, learning about tax credits, therapies, researching how to create a sensory room for Mylo.  I suppose at some point soon we will inevitably converge and pool all our awesome resources and get this show on the road.  Right now, we wait....again.  This time for the funding agreement to arrive,  To be honest, I am ok with a few weeks of down time, to shut my brain off until we get the ball rolling with therapy.

And to shut my brain off or up, as the case may be, is what I REALLY need to do right now.  My thoughts have been stuck in the future, which from past experience, I know is never a good thing.  Just in the last week or so, I have seen quite a few blogs from special needs parents, talking about the fact that their kids don't have any friends, or they have just discovered that their kid eats lunch alone every day at school.  This rips me apart.  I start thinking about all the 'what ifs' that the future may hold.  What if Mylo is never able to talk, what if we never figure out a way to communicate with him, what if when he goes to school the kids don't want to be friends with him, what if he comes home sad every day and we can't make it better for him, what if he can never live an independent life, what if something happens to Rogan and I, then what.  You see, living in the future and playing the 'what if' game is surely the wrong road to travel for no other reason than, today Mylo is happy, today Mylo is content, today Mylo is just perfect. So, I should just tell my brain to shut the hell up and live in the present.  I promise to give it my best shot.

I'm going to end this post with what I consider one of the cutest videos going.  I recently took Mylo to a drop in tots class at the Vancouver Circus School.  Although he couldn't have cared less about the circus type stuff, the big, open space, the squishy mats and the awesome echo his screams made were a stimmy kids dream come true.

I should probably explain what stimming is eh?  I realized as I was talking to my friend J today, whom I am so glad I ran into, that I use that word as if everyone knows what I mean.  Most, but not all autistic persons have what are known as 'stims'.  Here is the Wikipedia definition just to clarify:  Stimming is a repetitive body movement, such as hand flapping, that is hypothesized to stimulate one or more senses. The term is shorthand for self-stimulation. Repetitive movement, or stereotypy, is often referred to as stimming under the hypothesis that it has a function related to sensory input. 

Mylo has developed quite a few new stims lately, some of which you will see in this video. His most common ones are loud screams, grunts and vocalizations, hand flapping, ear hitting, toe-walking, clapping and lately chest thumping with vocalizations....kind of Tarzan-like.  It's fabulous! :) At first the stims freaked us out but now that we know that they serve a purpose for him, we let them make us smile instead.   Happy V day folks from R, M and I.  Only love.

sometimes life really IS like a box of chocolates ...or something.

I was cruising right along, blogging my little heart out for that first week.  I felt I had a lot to say, and always had a few good ideas for posts swimming around in my already overloaded and cluttered head.  Then Friday happened.  Friday was D Day.  Diagnosis day. My urge to write dwindled.  I find it strange that is has affected me so greatly, as it came as no surprise at all that yes, our kooky little man is autistic.  We have known for 6 months what they were going to tell us and even as I sat there listening to her explain the diagnosis and the cursory next steps, I wasn't freaking out, I wasn't shocked, I wasn't even crying.  I guess I must have put on my big-girl panties that morning, as I had to receive the news solo (R could not take any more time off work) and as such, I was being very brave, listening, trying to absorb as much info. as I could and generally putting on a good show.  For who?  No idea.  Maybe just myself?

That steely resolve didn't last too long. I hightailed it outta there, called R to tell him I was on my way home and then the tears came.  They weren't big, wracking, gut-wrenching sobs, just a steady stream of quiet tears filled with sorrow, heartache, loss, anger and all the many months of pent up emotion I had buried so deep.  I am not a crier, though I kind of wish I was.  It always amazes me how cleansing a good cry can be.  So, I drove and I cried and I thought about my Mylo and what a tough road we all have ahead of us. The reality is, though, Mylo is fine, Mylo is wonderful.  Right now, he has no idea that life could or should be any different. I hope with ever fiber of my being that our early detection and intervention helps him to bypass a day when he will be cognizant of his differences, but for now, he is blissfully unaware.  The catch is, we aren't.

This leads me into what I intended this post to be about.  Friends.  Hallelujah for friends!  Rogan and I have both always been kind of hermity, even before we merged our lives.  We did, however have a nice network of friends we adored and hung out with before the boy was born.  I say before, as it seems having a special needs child who takes up virtually ALL your time and leaves you with nothing to offer anyone, has a way of eroding friendships. Sad but true.  The happy news is, since moving out of the city, I have made all sorts of wonderful new friends both near and far.  Some I see or talk to everyday and others I have never actually met in person.  Regardless of the distance, I know each one is there for us.  They support us, they share in our joy and our disappointments and they let us bitch and complain when that's all we really need to do. In short, they are awesome. 

little Mylo in his autism puzzle pants!

Just the other day, my friend C (whom I have never met, but is a fellow ASD mom, blogger and doll maker extraordinaire) sent us one of her hand made dolls for Mylo.  It is the sweetest thing you have ever seen.  It was a gift, a gift she made and sent because she knew the pain and heartache I was going through during M's assessment week.  How RAD is that?  Thank you C, I feel so grateful to know you and call you my friend.

Today I received another gift, one which I would prefer to keep private. But, I would like to extend a massive thank you to B and G, you wickedly awesome women, and all the other amazing moms in my moms group. Mucho love.

The point of this post was to try and demonstrate that despite things looking/feeling grim, despite me currently being in a rotten head space and feeling alone, I know I'm not and I am one grateful mama.  Sorry if I buggered that all up. 

an oatcake is still and oatcake even if it is shaped like a dog bone

As some of you know, I have recently made the switch to a 'mostly' gluten free diet.  I say 'mostly' as I admit, I have the occasional slip up.  The change was brought about by a few converging happen stances.  In the early days after the red flags were raised for autism, I started researching everything under the sun that we could possibly try before we even had a diagnosis and therefore $ to start various therapies. 

There is a lot of attention in some ASD circles surrounding different biomedical approaches to 'treating' (I use the the term loosely but with cautious optimism) the symptoms of autism.  One such approach is something called the GFCF diet.  This stands for gluten free and casein free.  For those of you, like me not so long ago, who don't know what casein is, it is the main protein found in milk.  So, to be clear, GFCF diet = no wheat and no diary.  There is growing interest in the link between autism and gastrointestinal (GI) ailments and both gluten and casein have high instances of sensitivity or allergy.  The prevailing wisdom is, remove the offenders and symptoms improve. Some people even report they disappear entirely.  I am a born skeptic but when it comes to my son, I am willing to give anything a shot.  We have not ventured into the land of diary free yet, but with the last week solid of Mylo having non-stop squits, it may be on the horizon.

So, both M and I have been off gluten for a few months now and to be honest, I am not sure I see much of a difference in Mylo or his symptoms, but as an unexpected bonus, it appears my body is a much, much happier place sans gluten!  It is amazing to me that I have suffered nearly my entire life with debilitating stomach issues and it turns out much of it could be attributed to that little bastard gluten.  It is also very cool that a good few of my newest friends, whom I truly adore, are also gluten free!  This really helped to give me better understanding and pave the way into learning the ways of GF living.

The real point of this post is to share with you a recipe for the yummiest oatcakes you will ever have.  This recipe comes from my good friend K, who adapted it from a Canadian Living recipe to make it GF.  I have used her recipe lovingly and have since adapted it a little myself.  I promise, if you have never had an oatcake or you have and think that a GF oatcake is going to suck,  you will fall instantly in love with these delicious little cakes.  Without further adieu......

GF Oakcakes

• -1/2 cups (375 mL) Bob's red mill rolled oats 
• 1-1/2 cups (375 mL) either Gluten Free Pantry french bread mix or all purpose GF Flour (see below)
• 1/4 cup (60 mL) granulated sugar
  
• 1/2 tsp (2 mL) baking soda
• 1/2 salt
• 3/4 cup (175 mL) cold butter
• 1/3 cup (75 mL) ice water

Preparation

In large bowl, combine oats, flour, sugar, baking soda and salt. With pastry blender or 2 knives, cut in butter until mixture is pebbly.
Sprinkle water, a little at a time, over dry ingredients while pressing with fork to form a ball. Add just enough water to hold dry ingredients together. Shape into 3 balls and flatten each ball. (Wrap each portion in plastic wrap and refrigerate or freeze at this point if making ahead. Bring to room temperature before rolling.)
Place dough between two sheets of parchment paper and roll out to desired thickness.  I tend to make them on the thicker side, about a 1/4 inch thick.  Use whatever cutter you like to form your cakes, I use a little dog bone cutter, just for shits and giggles. At this point, I sprinkle beautiful coarse grain silver sugar on top of each cookie, cause it looks pretty and tastes yummy.
Transfer cakes to a baking sheet covered with either parchment or silpat (greased works too) and bake in 350°F (180°C) oven for 15 minutes or until crisp and golden. Let cool on wire rack and store in airtight container.  


The GF flour recipe I use is one I found on Gluten Free Girl and the Chef's blog.....it is fabulous.  Here it is:
200 grams brown rice flour
150 grams sorghum flour
50 grams potato flour
250 grams sweet rice flour
150 grams potato starch
100 grams arrowroot powder
100 grams cornstarch

Weigh out each flour, toss them in a container, make sure the lid is on tight and shake that bad boy up. Done. A kick ass GF flour blend.

I sure hope you enjoy these little yummies as much as my household does.  They are truly a staple now. woof!

reminder. happy but hard.

I found myself poking through some old pictures and videos today after getting the news that Mylo's genetic testing all came back negative.  No Fragile X, no Prader-Willi, those were the two big, scary ones we were worried about.  No, it seems it is only the devil we know that we are dealing with.  Autism.

The good news got me to thinking about a month period of M's life, I think he was about 8 or 9 months old where he was grooving right along, sitting up, babbling, smiling, making AWESOME eye contact and saying dada.  Honestly, I had forgotten that he did any of that, as it was so short-lived.  I vividly remember him saying dada, but until I watched this video I had forgotten that he used to look at me for more than half a second and give me the most exquisite smiles and giggles. He SAW us, he connected with us, it makes me pretty sad that I didn't cherish it more when I had it.  Had I known then what I know now, I would have held on for dear life. I wanted to show you what our Mylo was like before he slipped away into his private world.  Sometimes he still comes to visit, but we sure do wish we could get him to stay.  Only love.