Wednesday, April 24, 2013

Conversations with a Three Year Old

"I wanta have a baby in dis house"
"Oh yeah, where do you think you're going to get one of those?"
"In da store!"
"Babies don't come from stores.  They grow in Mama's bellies."
"Yup!  Want to see a picture of you in my belly?"
 I show him the picture.
"MOM!!  You ATE me???"
"No, buddy, that's not how you got in there..."

Saturday, April 6, 2013

Jumping for Autism

Friends - we need your help!

We're trying to win a trampoline for our sweet G.  Trampolines are great therapy for kids on the spectrum, not to mention great excercise - here's a little explanation as to why:

Trampolines feel good to children with sensory-imbalanced systems because they can provide excellent proprioceptive (awareness of one’s body positions) input and vestibular (how the body responds to movement through space) motion feedback. Kids with atypical sensory development lack the body’s ability to organize the senses [and] interconnection and interplay of all those senses is crucial to a feeling of well-being in a child. Jumping and balancing on a trampoline can help physically and sensory integrate the body’s different systems.  

Aneesa Usman, occupational therapist and clinic manager at Healthsouth Braintree Pediatric Center in Chestnut Hill, Massachusetts

A $1200 trampoline is not in our budget, but winning one is certainly in our wheelhouse!

I'm asking for your help...I don't do this often, so you've got to know that this is important to me!

Voting takes place through a Facebook App via Springfree Trampolines - these are the best and the safest tramplolines out there, and we'd love to have on in our backyard!

Here is the link to vote - I'd be forever grateful if you'd take a second!

G's picture should pop right up, but just in case it doesn't, you're looking for a picture of my Superhero, in a blue cape and a blue crown - the same picture that's at the end of this post.

Friday, April 5, 2013

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. )

Wednesday, April 3, 2013

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.

**  **  **  **  **  **  **  **

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,

We now interrupt this month of Autism Awareness... bring you some very important news!

See this kid? 
You'll never see a picture looking like this again - we have said our last goodbye to the beloved "soose" (rhymes with goose) after losing (and then finding, but ignoring) the last soother in the place.

So long soose.  I'll miss how you instantly transformed my big kid back into a baby...but since he's not a baby anymore, I guess it's time. 

Welcome to big-boyhood. 

Now about the potty...

Tuesday, April 2, 2013

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!

Monday, April 1, 2013

Happy April

It's been a crazy few weeks, and I am happy to be saying goodbye to March.  March was very full of long work days for Steve, many of them away from home.  Its what must be done, but that doesn't mean I necessarily have to like it.  We have grown to rely on each other so much and function so well as a team, that I find it terribly difficult to be on my own. But that's over for now, so I won't dwell!

As we say hello to April, we're also saying hello to Autism Awareness Month. 

I have to admit, my desire to post lately has been strong, but much of it is related to our struggles with Aspergers. When I moved to this blog, I decided I was going to make it a positive place to be, and for the most part I've stuck to that.  But the truth is, a lot of our days are filled with struggles, and I miss this place as a spot to talk some of them out.

I'm also torn as Griffin starts to get a bit older, with protecting his privacy a bit.  I feel like I don't want to post anything here that he may go back on some day and be upset about.  However, with some careful crafting of my words, I think I can stay true to all the things I feel this blog should be - a place for our pleasant memories, as well as a spot to record those lessons that may not be so pleasant in the making, but are important lessons none the less.

And, the kicker - if writing about our struggles help someone else in the process, then I've done a good thing.

My hope is that one day Griffin CAN look back on this blog, and read what I've written about him and our family, and realize just how far we've come.  I'm hoping to use these next 30 days to find that voice - the right place between "sunshine and roses", and "temper tantrums and outbursts", plus a little bit (ok, a lot) of my sarcastic wit, and some pictures of my ever-so-adorable children, and we should be running at full speed around here before you know it!

Thanks for sticking around!


(If you're visiting for the first time, I'd love to hear from you - who are you, and what brought you here? Are you here for the soap?  The scarcastic wit?  Aspergers shenanagins? Cute Kids? Cause we got it all!)  (If you're visiting for the 81st time, feel free to say hello too!) <3