As suspected

We had our long awaited Developmental Pediatrician appointment today.  Over a year we've been waiting to see this person, the "ONE" who could tell us what Griffin was dealing with.

And, its as we suspected.  Griffin has Aspergers (which they now call High Functioning Autism, or HFA, having dropped the Aspergers Syndrome diagnosis with the DSM5 - the most recent version of the Diagnostic and Statistical Manual of Mental Disorders.)

I feel relieved that we finally know.  I feel hopeful that Griffin is going to have a rich life ahead of him full of all the things ANY person deserves. I feel slightly annoyed that we had to wait that long to hear someone tell us something that we already know, but that feeling will pass. 

So many changes and good things have already come out of the therapy that we're already getting. I wish I had known earlier that those therapies were available to us as a family without the diagnosis, but we're getting them now and that's all that matters.  

Griffin is an incredibly smart kid.  He's reading easily at a grade level ahead of his own.  He is funny,  compassionate (when the mood strikes him) and very creative.  He's going to be JUST FINE.  We now have some more options available to us to give him the guiding hand that he needs.

And for me, that's all it really boils down to, having a kid on the high-functioning end of the spectrum - he just needs a guiding hand.  Maybe just a little more than ANY kid, spectrum or no, needs to be parented. Yes, we need to work with him on things that come naturally to other kids - like making friends.  But, at the end of the day, so what? All of our kids need to be taught things to succeed in life.  Griffin is no different.

I'm exited about the future, about the doors that are opening, about the places that Griffin's abilities will take him. 

“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You're on your own. And you know what you know. And YOU are the one who'll decide where to go...

You're off to Great Places!

Today is your day!
Your mountain is waiting,
So... get on your way!”

Dr Seuss, Oh, the Places You'll Go!

Things are looking up.

So things have been ticking along here, mostly tickety boo these days.  We still have our moments of extremes, but as a whole, things have seemed to be taken a swing for the upside.

(It's always terrifying writing that, like you're going to jinx the whole thing, and it'll go back to Madhouse City tomorrow morning at 8am.)

A few weeks ago, we finally got connected through our Family Doctor, as well as through another local organization called New Paths. We've been seeing a family therapist, as well as been "evaluated for services" by New Path (same thing basically - family counseling but with more of a long term focus.) And around the same time (funny, I have discovered the power of the squeaky wheel!) Griffin was also officially seen by the OT at the school and evaluated.

It's been a crazy month and a half!

We met with the OT today for the first time, after talking to her on the phone a number of times. She's lovely, and inspires a lot of confidence.

Griffin is on the top end of the chart for Sensory Processing  - all the lights, sounds, smells come at him, and he is unable to filter out the "unwanteds" from the "importants," and he's just constantly barraged with sensory input. He also has some fine motor issues, which though they aren't really a problem for him now, they could become an issue by the time he heads into Grade 3 (in one more year from now.) The good news is that also seems to have already developed a number of coping mechanisms on his own, and he's dealing really well with it.

He also seems to have some anxiety issues - he wrestles over decisions big or small, until he is paralyzed with fear - the fear of making the wrong decision. He has a lot of social anxiety too, but as always, he'll talk your ear off if you'll listen to him, especially the adults who take the time to hear his stories.

And his teachers just adore him!  He's wonderful at school, does his work, does what he's asked to do with no avoidance issues or fights.

We're meeting with the OT here at the house in a few weeks, and she is going to set us up with a program to do over the summer, which will be excellent. Griffin and I just had a long chat, and we're going to re-arrange his room on the weekend, make him a little reading corner, move his bed so he can get more fresh air, more light over his Lego table, and so on. The key over the summer is going to be routine, and finding coping mechanisms for when he IS overloaded and just needs to decompress.

We also meet (finally!) with the Developmental Pediatrician in a few weeks, who is the one who will give us a diagnosis, if there is one to be given.  I'm leaning further away from an Aspergers Diagnosis (in my professional, motherly opinion) and now thinking that we're dealing with a Sensory Processing Disorder, combined with some anxiety issues. But whatever - we're getting help now, and that's all that matters.

We ALSO concluded after Griffin's TWO emergency root canals, that maybe he had been suffering from some serious festering tooth pain...something that may have made him cranky and miserable and on edge for the past few weeks. Duh. Things have defenetly gotten better since the tooth repair. 

Coincidence?  There are none.

So that's where things are at.  They're better.  Way better.  I'm not bursting into tears on a regular basis anymore, and neither is he.  There are less fights, less battles.  There is still bickering and fighting and the occasional swing at someone, but on the whole, things are looking up.

Which is a good thing!

Asking for help.

It's been way over a month since a decent update around here.

Very unlike me.

I haven't been feeling the writing thing these days, maybe because we've been feeling kicked in the arse by this whole life thing.

We started out strong in April, but somewhere in the middle of Autism Awareness month (ironically) things went down hill. 

Griffin seems to be plagued by anxiety, and thoughts of self harm.  So much so that it ended us up in Emerg a few weeks ago when I felt like I had nowhere else to turn.  My toolbox was empty, I had no idea how to deal with what my six year old was throwing at me, so I waived the white flag and asked for help.

Turns out that was one of the biggest hurdles that we needed to jump...just to ask for that extra bit of help, because it's come flooding in now.  It's given me back my belief in the "system" and in the family doctor, and has left me feeling a little more hopeful that we can help this kid, MY kid, who can be so sweet and loving one moment and so terrifying and sad and angry and so much more in just one blink of an eye.

We have two appointments this week on Thursday, which can't come soon enough.  Things are SO TENSE around here, and I can't wait for some help to start flowing in.  I don't know what the answers are right now, but I know that someone does, and I can't wait to hear from them. 

Autism: What causes it?

Many people wonder what causes Autism.  There are theories, lots of them.

There is, of course, the vaccine theory, that toxins in vaccines cause Autism.  Personally, I don't buy this one.  My kid was on the spectrum from the day he was born, and vaccines had nothing to do with it. 

A graph showing the rise in GMO's in our food system, overlays almost exactly with a graph that shows the rise in Autism.  This is troubling for me, and in my mind, part of the problem.

There are also those that say that we are just more familiar with the conditions, and more people are getting diagnosed because of awareness.  I buy that as well.

But here's what I think:  I see a lot of me in Griffin, and a lot of Steve.  Griffin got Steve's hyper, bouncing off the walls energy, his love of all things Star Wars, his humor, and his melt-your-heart smile.  He also got a lot from me - his shyness around large groups of people, his sensitive nature, his nurturing spirit...and maybe his temper. So I feel like Griffin got the best and biggest parts of each us, with a bit of a supercharge.

Maybe he doesn't have sensitivities, maybe he has superpowers.

Maybe Aspergers is just the next step in the evolution of people.  Maybe we NEED more people with superpowers in the world.  Super smell, super sensitive, super loving, super kindness, maybe the world today needs that, and these kids are our answer. 

As for the meltdowns?  Well, no superhero can be super ALL the time. It's tough being super.

There's no "cure" for Autism.  But it doesn't need one.  These kids are all awesome, in their unique own ways.  What the world needs, is more understanding.  More awareness.  More tolerance. More realization that everyone is different, and that's ok. More love for our fellow man, no matter what their story is. Even if they live in a box in an alley.  Even if they're losing their shit in the middle of a crowded group of people. Even if they can't speak a word.

Maybe, just maybe, these kids and their Superpowers, will lead the world to that - more compassion, more understanding, more love. 

Nice to think about, isn't it?  Sure helps me get through the rough days.

My baby is changing the world; one meltdown, one hug, one day at a time. 

(As an aside - we've entered to win a Springfree Trampoline for G, who loves to jump as Sensory Therapy - if you wouldn't mind giving your vote to our little superhero, we'd appreciate it!  Voting happens here: Just click here to vote. )

Autism: how we got to here.

I can't remember how old G was when I first decided I/we needed help.  It was just after Corben was born I think, that I took him to a homeopath.  We had taken him to the naturopath for all his sleep issues (which basically boiled down to: he didn't sleep longer than 2-3 hours at a time, until after he was 2) which helped a little bit, but not a ton. I remember sitting with the homeopath, and her asking me why we were there.  "There's just something about him" I said.  "There's nothing wrong with him, he's just different."  I didn't know how else to explain it.

We went through all his sensory issues, his extreme sensitivity to smell, taste, excessive noise.  He's always had tummy troubles, bowel troubles, always been a barfer.  We christened him the pukemeister when he was a few weeks old, he was always throwing up what seemed like gallons and gallons of my precious breastmilk.

He had trouble getting along with other kids.  Was constantly throwing tantrums.  He had huge seperation anxiety - dropping him off at daycare was an epic event.  Every Single Day.  Sleeping was getting better by the time he turned 2, but sleeping through the night was a RARE occurance...he was usually up two, three times.  Falling asleep was an epic event too - it was like he just couldn't shut himself off.  Forget about him going to sleep without someone with him, that was just impossible.

I heard it all - you're spoiling him, you're letting him get away with murder.  You need to sleep train him, let him cry it out, etc.  Sure, I tried all those things once or twice, but they usually always ended up in tears - his AND mine.   I KNEW that it wouldn't work, and I also knew that I wasn't spoiling him - this was my G, this was what he needed.  For better or for worse, the kid needed me to lay with him, for usually 45 to 60 minutes, for him to fall asleep.  So that's what we did.  Until, of course, his brother came along and suddenly it was too much. And now what the heck?  We didn't know.

I was asked about his birth - there was nothing traumatic, nothing out of the ordinary. We went over our diets - we hardly ever fed the kid any sugar, never anything with food colouring, because we thought that's what made him bounce off the walls. Even fruit could send him spinning.  We limited dairy. 

We talked about allergies - the kid had none.  We started using all natural products in our home before he was born - no bleach, no fragranced laundry detergent, no toxic chemical cleaners, no crap in our toothpaste.  It was all natural soaps, shampoos, cleaners, you name it.

It seemed like we were doing everything we should be doing, doing it all right, and yet...and yet there was still this nagging feeling that something just wasn't typical with this kid.  His meltdowns were more than typical.  His sleep issues, gut issues were more than typical.

And yet, in the other times of the day, he was the happiest, cutest kid around.  He was always smiling at people in the stores...until they caught his eye and he played shy.  He picked up sign language at an early age, was crawling and walking and talking at all the right times.  And as he got older, we started to realize just how darn smart the kid actually was.  He had a memory like a steel trap, still does, remembering tiny events and details from months and years ago.  He was dinosaur crazy - could tell you about every kind of dino out there, what it ate, how many "kids tall" it was.  But he wasn't terribly sports inclined.  Couldn't get him to kick a ball, ride a bike (we're still working on that one) or throw anything with any accuracy.

When he got to school age, our troubles got worse.  Putting him on the bus was a nightmare, getting him dressed and out the door was a saga most times.  And then again, some days were like butter. But it was always the tinest things that could set the day awry - socks that felt funny, the wrong kind of shirt, running late and trying to rush out the door could turn the whole day topsy-turvy and end up with one or more of us in tears.

I've sobbed a few hearty and heavy sobs in the past 6 years, let me tell you.  Of course there's guilt - is it something I'm doing wrong?  Why can't my kid be normal?  What am I not doing that other parent's are? Why can't my kid just get along with other kids?  And I'll be honest, sometimes it was downright embarrasing.  When a meltdown happened in a public place, I did everything in my power to hide it or hightail it out of wherever I was in the fastest and most discreet manner possible.  Let's face it - you see a kid losing his shit in the middle of the grocery store, and many people's first thought goes to the parent - why don't they teach the kid some manners?  Why don't they discipline the kid?  I thought what I was doing was right, but often I felt like a failure when I looked at me and my kid through someone else's eyes.

And then finally, when we started talking about moving, and switching schools, I realized that the school up here might not be as lenient about offering Griffin services without a diagnosis.  He was getting an hour a day, most days, out of the classroom to work independently with a special ed teacher. This served to re-ground him, and get him out of the sensory-overload zone that is a classroom full of 4 and 5 year old needy and loud children!  So I went to his Kindergarden teacher and asked about getting him evaluated.  She agreed that it was a good idea, often wondering herself if he might be on the spectrum.  But it was the sweet, gentle, loving and intelligent kid that she knew 70% of the time, that made her think otherwise.  Fair enough.

So here's where we sit.  We've been to the pediatrician, who is sure G has Aspergers, but we can't be officially diagnosed until we see this Developmental Pediatrician - the diagnosis comes from her.  And so we wait, lucky in the way that Griffin is getting services at the school without an official diagnosis.

And every day, we try to do the best that we know how. Parenting a kid on the spectrum involves learning a whole new set of parenting skills.  I've always known in my heart that I was meant to be a mother...I have that in me.  But the mother to a kid on the spectrum?  That's a whole other ball of wax.

We're learning, slowly, ways to cope with the things that come our way.  Some days I feel like we're only at the tip of it, and there is SO MUCH more to learn.  It feels a little overwhelming sometimes. Part of the thing that makes it really difficult for me, is that Griffin can be the sweetest, most gentle, kind soul at some moments.  And at others?  Well, lets just say he's quite the opposite.  It's like parenting a six year old Dr. Jekyll and Mr Hyde.  It's heart-swelling love, and deep sobbing tears, and everything in between...and that can be just in an hour or two! But we'll get there...we've already come so far.

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This month is all about raising awareness.  It's about telling our stories, so that maybe someone can get help with their own story that doesn't feel quite right.  I wish I had done more digging when G was younger - looking back, I think if we knew about Autism and the signs of things to look for, we may have clued in earlier to what was going on.  So my hope is that someone, anyone out there, who is struggling in one way or another, will read this story, or another story that they find as their awareness of Autism grows.  That someone has that "lightbulb moment" that sets them on the road to making life life a little bit easier, and making it all make a little more sense.

Much love,
xoxox

What Autisim means to us

We have known from Day one that Griffin was "different."  We joked from his first weeks that he was bi-polar.  Happy one minute, screaming his head off the next, not sleeping.  As he got older we started to notice other things.  Had we known what to look for, we probably could have had him diagnosed years ago.  As it is, we're on a waiting list to see a developmental pediatrician, who will give us the diagnosis we've all known to be true for years now.  Luckily, both Griffin's previous school and this school has made services available to G in the schools without an official diagnosis - a testament to how obvious this diagnosis is in our mind!

Autism is different for every single person on the spectrum.  You can't find a specific list of symptoms and check off each one for each person you meet with Autism.  ASD, or Autism Spectrum Disorder covers off a whole range of disorders - including "conventional" Autism, Aspergers Syndrome (also called High Functioning Autism), and PDD-NOS (Pervasive Development Disorder Not Otherwise Specified.) The "big" difference between classic Autism and Aspergers is that usually people with Autism suffer from speech delays, or are totally non-verbal.

There is also a long list of other conditions that often travel along with an ASD diagonis - Sensory Processing Disorders, Oppositional Defiant Disorder, ADHD, OCD, seizures, anxiety, bi-polar...the list goes on.  Sometimes it feels like the deck is stacked against us, but there are lovely blessings included with a diagnosis as well.

There is not one checklist of symptoms/traits of Aspergers, but someone with Aspergers may exhibit some of the following:

-Have trouble understanding peoples feelings or expressing their own feelings
-Avoid making eye contact
-Have a hard time understanding body language
-Want to be alone, or want to interact, but don't know how
-Talk only about themselves, or their special interest
-Speak in unusual ways or have an odd tone of voice
-Have a hard time making friends
-Be very nervous in large groups of people
-Be clumsy or awkward
-Develop odd or repetitive movements (called stimming)
-Have unusual and strong sensory reactions
-Have narrow, sometimes obsessive interests
-Have rituals they refuse to change
-Described as being "in OUR world, but, ON THEIR OWN terms"
-Highly frustrated by their social awkwardness/alienation
-Lack effective interaction skills — not desire
-Unable to appropriately respond to social cues
-Described as “odd” or selfish
-Naïve and lack common sense
-Lack understanding of human relations and rules of social convention
-Are inflexible and incapable of coping with change
-Easily stressed and emotionally vulnerable

There are a bunch of things on that list that apply to our sweet G, but there are a few things that stand out strong - easily stressed and emotionally vulnerable, lack effective interaction skills, strong sensory reactions, have trouble expressing feelings - those are the biggies.  Some things we struggle with on a daily basis are clothing choices (Griffin won't wear certain fabrics, all the tags need to be out of his clothing, he won't wear hoodies or anything that is tight around his neck) and food choices (he is very particular about what he eats - texture, taste and smell are heightened) and meltdowns.  Meltdowns are basically a temper tantrum gone to the extreme - the tiniest thing can set off a meltdown.  

The other big struggle for Griffin is socially.  He desperately wants to have friends, but lacks many social skills that children of his age have - he often acts inappropriately in groups of people, saying or doing inappropriate things, partially because he gets easily overwhelmed by so many people, and so much noise.

Its not all bad though.  As a result of their strong senses, attention to detail, and their amazing memory, many people on the spectrum are considered "gifted" in certain areas.  Coupled with their extreme honesty, gentleness, perfectionism, these people, including our sweet G, end up being wonderful, unique personalities with a whole lot to offer the world!  Most people on the spectrum end up discovering a "special interest" of sorts, often something math or science related, which they then proceed to learn everything under the sun about, almost to an obsessive point - but this time it can be a good thing!  Astronomy, meterology, weather, music, machinery, dinosaurs, geography, maps, space travel are just a few of the more common interests that ASD people develop.  Griffin has yet to find his "thing" but I look forward to the day that he does, and he can find that one thing that he shines at!

So that's what life looks like around here.  My hope this month is to provide some education and awareness to folks who aren't sure about what Autism and Aspergers means, and maybe some personal insight for folks that actually know us and our sweet son.  Tomorrow I'm going to talk about all the things that we do "different" around here, to make G's and our lives a little easier - most of them are little things, but things that make a BIG difference to someone on the spectrum.

Happy Monday!
xoxo

Growing up Brothers

My kids are dressed up as the Kratt brothers.  Griffin with his backpack, and Corbie with a little bag that used to hold binoculars.  Griffin has packed his bag with play dishes, food, (real) binoculars, and hot chocolate.  Corben packed his bag too, with one thing - pizza.

These are my children, in a nutshell.

Griffin? Prepared for any eventuality.

Corben?  Mostly just hungry.

They are headed to the North Pole, to look for Polar Bears. 

My children recently have begun to play with each other, instead of just being a pain in the ass to each other.  (Griffin being very sensitive, and Corben being an impish little monkey, who likes to push Griffin's buttons, and knows exactly where they are.)

But they're having fun together, and hanging out together. (Corben has maybe, just maybe, stopped destroying everything in his path?)

It's so lovely to see.

And even as I type this, it's decending into a right before bedtime disaster.  But usually it would have gone here an hour ago.

Now tears, gotta go.

But you get the picture...this is nice!

Some words

Do you ever sit down at the computer and wonder what the hell you're going to write about?

Me too.

However, I also sit down sometimes, and wonder WHERE to start, there is SO much.

Like today.

So I think I'll just start, and see where this goes, m'kay?

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Fall is upon us, that's to be sure.  And with it comes warmer sweaters, and fireplaces on, and more cups of tea, and soup...lots of soup! I love this season, I love the snuggles and the cuddles that it brings, the cozy warmness and extra blankets.  The hearty meals, and the knowledge that these halcyon days of fall will soon turn too chilly to walk outdoors with out hats and mittens, are keeping us holding onto every moment of every day in the sunshine. 

Before we moved here, we used to come for a drive up here in the fall, because the colours were always so beautiful.  The road into the valley is a twisty, turny, tree covered decent that follows the winding river down, down, down into this little paradise that we now call home.  And that road, full of beauty and splendor?  I get to drive it every freaking day if I want to.  How awesome is that? 

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I've often been reluctant to talk about Griffin and the "issues" we've had with him here, for fear that he may someday come here to read it all, and feel somehow that we love him less for all his differences.  However, as I know this is not actually the case, in fact, we may love him MORE for all his differences, and we're conscious to tell him that all the time.  For me, it's also important to discover the words to talk about all this - for instance, I don't feel that "differences" is necessarily the right word.  Neither is "issues." I started to type difficulties...there are certainly those too, but they are not all that this syndrome is about.  Sometimes though, in the heat of the moment, they are certainly the things that stand out.  I'll find the words, it might just take time.

However, it sure has been nice to put a title to this all.  I was fearful of giving Griffin a label, but there are SO MANY other parents out there who are dealing with the same thing that we are, and now with a simple google search, I can connect with them, and go 'OMG, your kid is EXACTLY like mine" and know that we're not alone in all this.  And that?  Is huge.

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Babies are SO tiny. You forget, after yours grow up, and out, and start eating solid foods, wiping their own bums, start talking back, start setting the table.  You forget that they were once that small.  I mean, you remember, but until you hold a newborn in your arms again, it's hard to fathom that something that tiny and that perfect could grow inside and come out of a PERSON.

It's been SO nice to have a teeny tiny baby in the 'hood!

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This kid?  Is crazy.  But we have been having SO MUCH FUN hanging out together.

New new normal

Yesterday my "baby" turned six.

Holy crap, how is that even possible?

Did you know that six is one THIRD of the way to 18?

Does.  Not.  Compute.

Yesterday also happened to be the first day of Grade one.  So much excitement in one day!

Hell, there is SO MUCH "excitement" happening around here these days...

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On Friday afternoon, I went from being gainfully employed at a pretty decent job, to packing up four years worth of work mementos into a dinky little cardboard box, and walking out the door.  (Not without a few tears, I may add.)  It was surreal, and terrifying, and FREEING all at the same time.

I left my job because I am needed here, at home, more than at my job.  My kids need me.  Specifically, my newly minted six year old needs me.  In the presence of only an "unofficial" (but what we all feel is quite accurate) diagnosis, it would seem to be that Griffin has Asperger's Syndrome.

We have always known from day one that something was different with Griffin.  His behavior wasn't typical, and it's been a long road to figure out why.  Thanks to an extra-special teacher that taught Griffin through Junior and Senior Kindergarten, we've finally come to this place of a diagnosis.  We're continuing down the path of getting it made official, but we're looking at about a 12 month wait to get into see the person that can even make that diagnosis (good lord.)  He's on the moderate end of the scale, but he's certainly on it.

So here we are, at the start of a new school year, with a new teacher in a new school.  A new roll for Mama,  a new routine for both the boys.  A new house, in a new community.  And I truly feel that we're in the best possible place that we can be for all of this to go down.  The support of the community here is INCREDIBLE, and is exactly what we need here.  Knowing that we're not in this alone makes all the difference in the world.

I've been researching, reading books and websites, and learning about my son and how to help him.  Because it really is a whole new set of skills that we need to figure out, all of us.  (Which is good, because most days I'm feeling like I'm at the end of the skill set that I already have...I am glad there are new ones to learn.)  There are also big diet changes to be made - I'm just delving into the world of potential food changes that may just help smooth the road.  I am thankful every day for the internet and the wealth of information that is out there, but sometimes it feels like it is SO MUCH and I don't even know where to start.  But I'm starting, and that's what matters.

And in all of these changes and challenges, there is Griffin.

Griffin is incredibly intelligent, with a vocabulary that amazes many adults.  He has amazing perseverance at tasks that he's truly interested in.  He can be so very kind, and loving, and so desperately wants to be loved back...and he is, oh how he is!  We love this kids to bits, and both Steve and I see so much of ourselves in him.  But I compare his behavior to a pendulum - he mostly lives in the two extreme ends of the swing of the pendulum, and rarely hangs out in the moderate middle.    One of the biggest things I want out of all of this, is for HIM to understand who he is.  I want him to know that he is NOT stupid, and nobody hates him (two things which come out of his mouth on a regular basis.)  He only needs to learn how to deal with this condition, so he can thrive.

And he WILL thrive.  I can see the positive sides of this condition already.  Because of their tendancy to focus and fixate on certain things, kids with Asperger's often grow to become "experts in the field" on their chosen topic.  Griffin at 4 could tell you more things about dinosaurs than most adults knew.  He's spent the past few nights assembling two Lego ships that he got for his birthday - fairly complicated pieces of construction, and he sat down and did them both, start to finish, with hardly a helping hand.  He's highly intelligent, and succeeds at most things that he puts his mind to.  This kid is going to be just fine.

So.  It's all about working with the teachers at his school.  Reading and researching and advocating.  And loving, loving, loving the heck out of this kid.

And lots of very deep breaths.

We love you, kid.  We're so proud of you, and who you've already become, and can't wait to see where we go from here!

New {Educational} Digs

My sweet G.  My little man who has had so many miserable days at school.  He was SO excited today, to visit his new school.  I think it might be just what he needs.  It's small, intimate, and filled with love - you can tell just by walking in the front door.  I hope, with all the hope in my heart, that this is a change that does him good.