We Believe in Aaron

Today we have our first transition meeting this afternoon for Aaron new school.

We will be leaving his beloved Coalhurst (which deserves it's own blubbery-full-of-gratitude post) next fall, to start grade 1 (full day...yikes!!!) at our neighbourhood school down the street. 

Remember how terrified I was of Kindergarten? 

Well this is worse. A whole new school..heck new school district! 

I've been a mess. 

I've felt really good about this move, but today as it became real, and I realized if it's this hard for ME to start at square one, what will it be like for Aaron???

Deep down I know it will all turn out. It always does. 

I now I will look back and think how did we get such great teachers and aids, so suited to him? 

And I know the answer to the question: The Lord blessed us. Again.

Because at the end of the day after I've stressed about having just the right words, or paperwork, or photograph or video to transfer the devotion and belief I have in my son to these strangers-- in the end it is Aaron who wiggles into their hearts and transforms their job (however tough) into a privilege.

So even as I get all anxious, I know I'm not alone. As always in our journey there will be supportive wonderful team members, compassionate and helpful friends, amazing better than you could ever expect peers, and my Heavenly Father to hold me hand, as I hold Aaron's. 

You may struggle at times with painful emotions as you try to understand the disability of your child and your role as a parent. Having a child with unique needs, however, can be the beginning of a journey that leads to great spiritual blessings. Draw close to Heavenly Father and allow His Spirit to comfort and instruct you. Trust that God will make you equal to the challenge and will bless you with insight and understanding in making decisions regarding the welfare of your child.                            lds.org disabilities website

Last IPP meeting I felt that I wanted to write up our own little "document", regarding what we believe about Aaron, his roles in a classroom and the real benefits of inclusion. (Yup I totally copied the Articles of Faith!) I want to do another one of things WE KNOW for home based on this talk.

Okay time to be off to the meeting. I feel much calmer know. Thanks!

I get to go to Italy too?!? (A post I wrote a while ago, but saved for Autism Acceptance month)

"WELCOME TO HOLLAND"  is a pretty famous essay written in 1987 by Emily Perl Kingsley, about having a child with a disability. I stumbled upon it pretty quickly after I entered the ranks of special need parenting, and it's been a good metaphor to keep things in perspective and in re-adjusting expectations.

Here's the essay...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

Okay so with that now in your brian, here's my thoughts lately. 

I love "Holland". Some days are better than others, of course.

But I have learned things and grown in ways I can't even imagine giving up.

I truly believe the Lord has special lessons for me, that raising Aaron was specifically designed to teach (I say that realizing we're in this a mere 5 years, with a oodles of lessons yet to come!)

The other "travellers" with me in Holland....amazing, strong, resilient beyond belief. 
Stunning in their dedication, inspiring in their endurance and touching in their hope.

But I spend a lot of time with the people "in Italy" too, and I tried hard to relate. But the reality was that although I knew quite a bit about Italy-- I'd read parenting books, worked with lots of kids, got my Ed degree--- I still hadn't really been to Italy!


I confess, at first (during the poo-smearing months, the beginnings--little did I know-- of sleeplessness, the stress of realizing my child only ate a handful of foods, figuring out ways to communicate with our non-verbal child, all while simultaneously coming to terms with everything Aaron's diagnosis meant to our family's future) I was a bit jaded by other people's seemingly less-dramatic parenting concerns. How could they complain about Italy?!?!
It's like I've looked a the pictures of Italy and thought I "get it" . When I really didn't at all.


But I'm starting to. My little "Italians" give me a run for my money, every single day! 
And there are actually days I think Aaron is my "easy" kid!


The joy that comes from parenting Aaron is much like him--mysterious, sometimes sudden, but also unbelievably solid, in a quiet constant, unquestionable way. It is one of a kind.


The joy that comes from McKye and Levi, is also much like them--just more normal (typical if you prefer), so fun, easy to anticipate and easy to underestimate, too. While more expected and full of cliche moments you've seen hallmark commercialize on a million times,  til it's you and your kid-- kissing that scraped knee or receiving that tight toddler hug-- you can't really imagine how wonderful it actual is.

I'm seriously in love with each of my children. And like all romances, our intimacies seem so exclusive and unparalleled. Aaron my first love, could never be matched. And yet twice now my heart has enlarged and filled to what I think surely must be capacity.

Just recently I was describing to a friend my new found joy in my "typical" kids playing and interacting together. How different it felt. Not more joy just a wholey different  joy.

Right now, my two younger boys are in the tub beside me. One moment giggling uncontrollably in united brotherly bliss, the next screaming, betrayed, infuriated, crying until the giggles take back over, and happiness once again reigns. All the regular ups and downs of being social creatures.

And as water comes splashing out of the tub onto my laptop and I hear my self say, "Stop it!" a ridiculous amount of times to my oblivious children,  Aaron slips in to give me a quick kiss/sniff and runs out. There is difference. 

But the sameness is in the love. The loyalty. The belonging. A family: 

"a strange little band of characters" (Erma Bomback Quote) all on this trip of family life.

Journey tales always need a good interesting cast, don't you think?

And whether we're in Italy OR Holland this is it's quite the trip!

Heck, maybe we're in some random country no one's ever heard of! Every family is different. Every child is different. And while it's fun to relate, and many things about family life can be oh so familiar, the reality is we are the only ones being the moms to our kids, in our house, in our life.

And mine is just for me. 

My trip to wherever the heck it is we are!

Semantics and advocacy: Getting it all untangled in my brain

Shoot! I said it wrong!
Again.


In my mind I'm slapping my forehead.


I'm at a meeting for outraged parents about the latest injustice to kids on the spectrum, via government bureaucracy and of course, funding. (Ben keeps asking me why I go to these...I'm thinking he has a point.)


All the other parents said  it correctly. 


"My son____ has Autism."
"Our 4 year old, was diagnosed with autism...."


But I said it wrong.
"My oldest son Aaron is Autistic."


They probably had to hold back the gasps. 
To think that a parent of a "child on the spectrum" would be so insensitive and so wholly politically incorrect. Egads!
He is not his disability!  They are themselves first!


Okay, okay I get it.


But I'm not sure I totally agree.
At first, it was just grammatically clumsy to me, but I soon realized people had very strong feelings about the correct way to refer to Autism. (Autism in general rouses lots of strong feelings). 


So I learned quickly.


Just like I mastered all the endless acronyms and educated myself on the various therapies, diets, read oodles of literature and first hand accounts of families.  But the term Autistic, still stuck in my semantic network. Even though I dutifully phrased things, Aaron has Autism.


But deep down it still felt weird. And I was only doing it cuz--- well I was learning how to be a
"good" special needs mom. And that was on the list.


When I looked at the "people with Autism" speaking out, they use the term "Autistic" all the time.


And they say it with pride. It's part of who they are.
"My name is Temple Grandin, and I'm Autistic!!!!"
Full online communities of "Aspies" wanting to connect and belong within a community of their peers.



A blogger who entitles their blog  "the autistic me" writes:
I created this blog shortly after I'd been officially diagnosed. I've changed a lot in that time, especially in how I perceive myself and my autistic identity. 




When we describe aspects of ourselves, we don't say we have things, we say I'm creative, I'm artisic, I'm musical...things we are proud of. Things we ARE.


While autism shouldn't "define" him, I still feel like it is such a big part of who Aaron IS.


If you don't "get" autism, good luck "getting" Aaron.








The Autistic Hoya includes on her blogs home page a

NOTE TO REPORTERS, JOURNALISTS, WRITERS, AND BLOGGERS:

If you are on this page because you are writing an article, post, or editorial that mentions me, please be advised that I prefer to be referred to as an Autistic or an Autistic person, and NOT as a person with autism or a person who has autism. You can read more about the reasons at the following:

This article puts it way better than I ever could

Here's a few excerpts:

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am.

But let's think about what we are doing when we use these terms. When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

It felt so good to read that. To have my gut feelings validated, to know I wasn't necessarily saying/thinking things "wrong". (She's very clear later on in the article that she respect others choices of using individual first language, as do I...only fair right?)


When I'd say Aaron HAS autism that's when it sounds like a disease, something to be ashamed of, to "get over"  like a nasty cold, or one day hopefully "beat", like someone who HAS cancer. That the "thing" they HAVE, is separate from them, a threat that needs to be defeated, overcome and cured, rather than understood, allowed, even celebrated.


Instead it's deemed thee enemy. A fight, calling for Warrior Mother's to heal their kids.
And maybe some people just need a clear adversary, something to fight. The schools the government, the ignorant person in the grocery line.


But can we really fault people for not having the same struggle as us? Do we know everything about all the various disorders, situations, challenges they could be facing? Can we really fault them for not knowing as much about autism as we do? We want tolerance, empathy and understanding...
LOVE this quote:
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

So even though I may not fight legislation (and how grateful I am to those willing too)

I fight. 

I fight to stay awake after Aaron's had another sleepless night.

I fight back tears when I see others figure out there's something a little off with that kid at the playground and walk away, curious  at  best.

I fight to bite my tongue and stay off my soap box when we get dirty looks from the woman at the til, cuz maybe she's had as bad a day as me.

I fight to maintain balance in our family life admist the invasion of professionals and programming. 

I fight to not give up in this parenting journey that's not going let up after 18 or so years.

I fight everyday. 

I fight to let the good win, for the love to be enough, for the beauty to sink into me and wash away the hard.

Instead of chasing treatments, I'd like to focus on how we treat each other, because I truly believe THAT is the lesson that special needs gives us. 


In some ways especially Autism.  It's like an intense exercise in empathy. To try and understand someone who's very thought processes and  motivations, are so unique.  To illuminate the requirements for love, and see the inherent worth in us all.


Because my Autistic son, is so worth loving. 




Even having giggle fits in his parents' bed at 3 am.

We all are.

Endowments, Easter Eggs and Experiencing the fun Grandma's Houses

After a week of Autism awareness and some moustache fun, 

Easter hadn't got really planned or prepared for... like at all.

Well part of the weekend was planned.  Ben's brother was going to the temple for the first time, and my brother's fiancé was going her first time the next day. So Easter weekend was full of beautiful reminders of the Saviour and the triumph of the plan that can grant us such perfect hope that "Sunday Will Come".

But as far as all the fun, cutsey kids stuff, I had nothing.

Imagine how thrilled I was to get 

back to Grandma Bretzke's after the temple Friday to find this:

Ben's fabulous sisters,

 had not only babysat the 6 grandkids, they'd managed to have them all decorate eggs too!!!!

Can you guess the fate of the egg Levi's holding?

On the Saturday, they rolled (or because it was MY boys, CHUCKED!) the eggs down the hill too.
Best Aunties ever!!!!

Sunday was out to Grandma Bowen's.

So excited to have a kitty to tortu...play with.

Love his glowy ears

Nothing says "satisfied" like chocolate drool!

In Glenwood, you play in the street.

And it's fun!

Those mountains, that stretch right there: mine.

And when the street gets old, you play in the culverts.

Unless you Aaron and then you play with the gravel....forever, or until someone stops you.

McKye threw his ball in and was to scared to go get it. So, naturally, he sent his little brother in after it.
Who happily obliged.
Not the last of the McKye directed "quests" I fear.

He was sure proud.

Calming it down with Auntie Becka.






I do love my mom's house. I love how she loves the traditional

But is always looking for cute NEW traditions too. 

These darling little nesting birdies, were healthy AND delicious!

It makes me so happy that my kids have Grandma's that are so welcoming and accommodating,

 even to my wild sons. 

That "Grandma's House" whether Bowen or Bretzke will be places of wonderful memories for them...not that they'll have to remember, cuz I take o many darm pictures!

We played games at Ben's Uncle's house later that night, but apparently I was finally all pictured out. It was fun until we realized Aaron have flooded their basement with a water-cooler I was unaware of, soaking the piano on the floor beneath. 

We couldn't get through Easter completely uneventful now could we?

Actually our best Easter moment was during Family Home Evening Monday night.
We'd watch some New Testament videos, and put a cut out Jesus in and out of the tomb and then sneakily moving him so He was "All gone!"


Then, remembering McKye is my hands on/kinetic kid, made up the game "Resurrection."


We laid on the floor with our tongues hanging out "dead", until Mckye called out
"Rrrrrrrrrrrrrrres-ection!!!!!" 
Then we'd jump up and run in happy circles "Yay! We're Res-ected!"


We must have played at least a dozen rounds.


I'm grateful the resurrection is something I have always believed in. Individuals are just to complex and unique to even imagine them just ceasing to exist.


I think of my kids, they could be born a day and you can't imagine life without them. 
I'm grateful I can look those same kiddos in the eye and tell them, I know because of Jesus Christ we will all be resurrected and live again with Him and one another. 


I love the joy, and the triumph of Easter. The assurance that Christ has overcome, and that if we'll but come unto Him, we can every hope and happiness prepared for us.

Moustache Birthday Bash

Remember how on my Light it up Blue post, I said 

my favorite part of throwing a party is taking the pictures??? 

Well thanks to my good friend Amanda, that's exactly what I get to do each time her kids have a birthday.  And man alive does she throw cute parties. 

Watson's latest was a Moustache Birthday Bash!

I did get recruited to make the pin the moustache on the gentleman poster. Handsome bloke, ain't he?

Not as handsome as this little man though. I kinda got obsessed with Levi's cuteness. (Plus other people weren't as excited for me to be snapping pictures of them in fake moustaches....so lots of Levi it is)

Maybe one day we'll have a party free of our fav orange sponsor:)

Cuter on the kiddos, me thinks.

Watson found the mis-placment of moustaches pretty darm hilarious.

Mentos and Coke..ingenious present!

THe dangers of sitting to close to a balloon.

I LOVE this picture cuz I have TOTALLY feel exactly what Amanda is feeling right here...her face says it all.

It all worked out...we got one:

"This sucker is another tricky moustache isn't it?!?"