Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Friday, March 26, 2010

I choose love...and anger...and happiness...for they are all me.

Many of you who have been awesome enough to read my blog have sent me many messages of praise and love.
Thank you :)

I want to point out however, where I am today has been a very long time coming and a journey I am still fighting every day.
I love you all though for the support, and I really hope reading my "blah blah blahs" are helping....helping your soul:)

My mother believes that our souls are everlasting....that it is the driver of our physical lives and that we choose our life here on earth before we "arrive".
My mom is one of the kindest, strongest and beautiful souls I have ever come across.
She cries every time we talk on the phone about Kannon.
She feels so much for the little man and for his daily struggles.
She also tells me that I have chosen this life I am living.
That my soul wanted to experience all that I am going through.
She says that Kannon and I chose each other before we became physical entities....

I believe that we do choose our lives.
This is how I accept what happens to me and what is "thrown" my direction.
I CHOSE to learn about beautiful struggles and tough days by choosing my family and friends.
Life is all about choices...ones that we even may have made before we were born.
Whether this philosophy of life is true or not, it still has a beautiful lesson in it.

Beauty, raw emotion, anger, love, trust, hope....
These all come from experience.
They all drive us to become better souls.
These emotions cannot come at face value and must want to be shared or put out there by our own choice.

Sometimes people think too literally.
Sometimes emotions are hindering and can become psychological resources for corrective action(s).

Then, sometimes you fall in love with something or someone and nothing else really matters.

peace :)

Thursday, March 18, 2010

What they don't tell you about Autism

Pretty much everything!
For those of you out there who don't know Autism, or are just learning about it...
Here are things that I have learned and wanted to share.
These can be great tools to identify Autism within a child, or how to become passionate towards children with Autism.

1. Repeat, Repeat, Repeat after me.
Kannon says the same thing over and over and over again...whether you respond or not.
It is like a broken record, and it can test your patience to the max. He will ask me 100 times a day for the same thing...and usually I have to repeat my answer at least 70 times to him, or else it would be 200 times he would ask.
Or if he is fixated on a certain movie he will repeat lines from it over and over again for no reason.

2. Physical "ticks"
These are the hand flapping, head hitting, tip toeing things.
Kannon flaps his hands a lot. When he's excited, when he's anxious, when it's dark out...
It gives him sensory input that is somehow necessary to him.
Almost like an itch that has to be itched...he has to do these physical ticks to get him through the day.
It can look strange, and it does attract attention, usually strange looks...
These physical ticks are usually one of the first things that indicate to other people something is "different" about my child.

3. Tantrums
These can range from mild to OBSCENE.
They can last 1 minute to 30 minutes.
They can come out of nowhere and be triggered by the smallest of things.
When out in public Kannon will be set off by certain things, noises, light conditions, visual scenes.
Sometimes he will just stop and stare or shut his eyes, cover his ears, move on...
Other times it is almost as though it physically hurts him to have seen or heard these things.
He reacts in a physical manner, and on comes the "tantrums".
These tantrums can be very loud and very embarrassing.
I have learned that I cannot control these.
I have learned that other people are going to look at Kannon and look at me like I am a bad mother for letting my child behave that way.
I have learned to say "oh well"...
It is all part of the deal.

4. Hoarding/Perseverations
Kannon specifically has both of these issues.
He LOVES to hoard things...aka collect, stockpile, stash...
It is like he is preparing for a natural disaster. He HAS to have a stash of goods.
He has bags and bags of things that he is very attached to for no reason.
He stuffs the bags full of random toys, trash, paper, etc.
Then at night, he has to have these bags right next to him...almost like a security blanket.
He panics without his "stuff".
He looks like a bag lady...it's very quirky.
I have found leaves, sticks, rocks in my bed after our walks. He collects things and leaves them as treasures around the house.
It gets interesting for sure :)

Perseverations are the WORST.
This is when the child almost obsesses about something or a specific object.
Kannon switches his obsessions about every month or so.
His perseverations consume him.
Right now it is his bike.
He talks about it all day, asks for it every 20 minutes and will not let up about it.
It absolutely tests every fiber in my body for patience.
However, I can't help but feel so bad for him. He really has no control over this.
He can't help that he loves this certain thing so much and his brain cannot switch it off.
The worst was when he was obsessed with belly buttons.
It made going out in public impossible, he wanted to raise up every ones shirts to see their belly buttons.

5. Texture aversions
A lot of these kiddos have aversions or sensitivity to textures.
ALL kinds of textures....food, fabrics, environment, etc.
Kannon specifically has food issues.
If the texture bothers him, he will spit it out even if it's chocolate.
He prefers to wear long sleeve shirts. He likes his arms to be covered. His therapists worked with him for months on being flexible about wearing short sleeves.
He also prefers no socks...we had to work on getting him to wear socks with his shoes.
Little things like this make every day life a little more difficult at times.

6. Autism has no "look"
This is what I get asked the most....or the most looks of confusion about.
On my website I specifically put a page up where I want people to see pictures of kids with Autism...because bottom line is, they don't look any different from any other kid.
This may sound weird, but people think Autistic kids will look a certain way, like a child with Down Syndrome does.
But they don't.
This is sometimes why Autism is difficult on the parent.
To the public eye your child looks normal yet is acting "different"...."crazy"...etc.
People are confused about what they are seeing.
They expect your child to look different since they act different.
Not the case.

7. Autism is a gift
It really is.
It is challenging, overwhelming, frustrating, and confusing.
But it is also magical, humorous, fascinating and full of learning opportunities both emotional and logical.
It shows me just how powerful the human mind/brain is.
Complex and mysterious.
It is something that is given to you as a parent...without choice or knowledge, like a gift.
It is something that you must accept and open with a happy heart.

I often say to myself that "I won the Autism lottery"...
Meaning, 1 out of 70 boys are diagnosed with Autism.
I got 1 of those 70...
I was somehow chosen by fate, or genetics, or something beyond this world...

How lucky I truly am :)


Friday, March 12, 2010

I knew I became a designer for a reason...

I graduated in 2006 with my bachelor degree in Interior Architecture, AKA Interior Design.
I LOVED every second of school.
It felt right for the first time in my life to be sitting in a classroom.
Too bad 2 months into my 3 year schedule I popped up being pregnant with my first child (Kannon) :)
I never make things easy for myself, even when I don't intentionally do it.
So I went through most of my schooling pregnant.
I was 6 months pregnant with Kalena, my daughter, when I graduated...
I gave my Valedictorian speech knocked up on a stage in front of hundreds, hmmm, I can only imagine what was going through some people's heads.
Whatever...like I have said before, I never take the easy route in life, and quite frankly I find it fantastic to challenge people's perspectives on how things "should" be.

SO, yes, I did it.
I graduated at the top of my class 6 months pregnant with another child at home.
I had many long nights...many long nights.
I think I got so used to NOT sleeping that when Kalena arrived, I was fine with the no sleep schedule.
Maybe that is also why I got postpartum depression after I had Kalena too.
Bottom line, I worked my tail off for that degree, and I loved every minute of it!

That degree was the only one that made sense to me.
I am ridiculous about how my home looks.
NOW, don't think this means I have only the finest furnishings in my home because I DON'T.
In fact Target is one of my favorite places to buy things for my house.
I am just very particular about how my furniture is arranged, how many pillows are fluffed on the couch, and how many blankets I can get on one bed...color coordinated of course.
I love my home.
I love feeling cozy and safe and aesthetically balanced within my environment.
I love colors and textures and how they make me feel.
Considering I spend 90% of my life in my home damnit it's going to appeal to me.

All this being said, however, I don't mind chaos in my home.
I like laughter, ball playing, crayons on the floor, etc.
When you have kids you kind of have to get used to this decor....you don't have a choice unless you are picking up every 10 minutes.

So, I think my talents have been completely utilized to their full potential.
I think my degree was worth every late sleepless night.
I am constantly redecorating due to sharpie marks on the wall and carpet...the furniture must be arranged to hide them all.
I change pillows on my couch every season due to stains, as well as my curtains...but no one else has to know that:)
It just appears as I care enough to change the color scheme of my home every single season.
I also know how to make a room appear as it does not inhabit children....baskets, baskets, and baskets.
They hold everything, you can throw everything in them and they neatly tuck away into nice clean looking shelves.
They hide any evidence of Dora the Explorer books, plastic animals and other child paraphernalia.
The fact that Kannon loves to draw pictures of everything, all of my drawing and perspective classes have come in handy. Princesses in perspective, mermaids and pirates in a room with lush surroundings....um hmm.
I also have all the markers and colored pencils a child could dream of.

Who needs clients in Manhattan Beach?
I have my own world of Interior decorating going on every single day...


peace :)

Tuesday, March 9, 2010

Diseases that start with "A"

Specifically Autism and Alzheimer's.
I have dealt with both, and hopefully will never have to deal with the latter again.

The similarities between the two personally astound me sometimes. I find myself having deja vu every day with Kannon. I find that sometimes it helps me in grieving my father, and others it just makes the hurt deeper.

The blank looks.
The confusion, hurt, and emotional pain I see him go through.
The inability to communicate your feelings on a human level.
The loss of physical and emotional survival tools.
The constant judgement by others and being misunderstood daily.
Lack of friends, social interactions, and shunning of society.
Autism and Alzheimer's.

I don't believe I will ever find true peace with my fathers passing.
His suffering was unimaginable, yet I witnessed some of it firsthand, and his last years on earth were just plain pathetic.
The hardest part for me to accept through all his battles with Alzheimer's was the loss of his dignity. I could never get over that. To see my childhood hero loose it all...that pain will stay with me always.
He was such a strong man in his early years. He loved life, family, and had an energy about him that was contagious.
My house was always filled with friends or visitors...good thing my mother was a great cook, as she always was in the kitchen feeding people.
I loved the hustle and bustle of it all.
I loved hearing laughter and chatter as a constant background noise.
I loved that people seemed to want to be with our family and that they found our home a place they could put their feet up and relax.

Funny how quickly that changed after my father got sick.
People didn't come around as much.
No more pop ins or drop bys.
No more chatter and laughter filling our home.

I know it broke my dads heart.
I saw it all over his face every day while he would sit in his chair looking out our back window to the mountains. I never saw him cry, but I knew he was heartbroken.
After all his years of entertaining people and laughing....he was now silent.
Even though he was sick, he still had many moments of clarity where he knew exactly what was going on...even how sick he really was. I think that simple realization alone pulled him so far into himself that Alzheimer's took him.
And he never came back.
Our home was never the same, and he was gone...inside himself somewhere.
I always thought he was back to the good times in his head...back to when our home was filled with people and parties and food...back to the laughter.
I hope so.

Having a child with Autism can feel the same way at times.
It is never easy to just jump in the car and go do something...anything.
You can't just drop by people's homes to say hi without constant worry your child is going to trash the place or get into something they shouldn't.
People don't tend to really embrace your child either.
They don't just get in there and play with them....they don't swing by your house to chat or put their feet up and relax.
Who can blame them though?
It is hard to interact with an Autistic child if you are not used to them...and god knows no one is "used to them".
I'm a mother who deals with it everyday and I still find myself caught off guard sometimes when I am around other kids with Autism. Autism will do that to you...it never is consistent.
Point being, it is much more difficult to have an "open" home when there is a child like mine in it.
I want more than anything to have people always here...always finding comfort and laughter here. I know it is possible. We have friends who are amazing with Kannon and who genuinely enjoy his company...but it takes patience, and it is not for everybody.
I do consider myself and Kannon lucky that we do have some amazing people in our lives who love him, and find the laughter within him and themselves.

Autism I have found, just like Alzheimer's, weeds out certain people in your life.
Or perhaps it just forces you to live a certain lifestyle that may not be as social, open, or free as one would prefer.
It tends to isolate you.
I hate that.
This is one issue I will fight.
I refuse to believe laughter cannot be part of this all...it can.
I laugh every day with Kannon, and at myself.

I hope my dad is now laughing too...at Kannon and I.
Looking in on our daily adventures of life.
I hope he is proud of me and of Kannon.
I hope he knows what he went through was NOT for nothing...
It made me a better person.
A stronger person.
One who now has some of the emotional tools needed to raise Kannon.
For without my fathers suffering and journey, I would not be able to do the things I do every day for Kannon out of love...out of respect...out of hope...

Just no more "A" diseases in this lifetime please...
I'm good.

peace :)

Wednesday, March 3, 2010

Discovery of the human body...

Oh what a beautiful time in life...when body parts are fascinating.
They are just that too....not "fat" or "stretch marked" or "too small"....blah blah blah.

Kannon discovered his boy tool (aka penis ) when he was about 3ish...
I remember it vividly.
The UPS man is at our door when I see him all of a sudden smirk while looking over my shoulder.
I look back at Kannon who has his pants off and is swaggering about showing his tool off to the UPS guy. Then his tool not being used to all the fresh air decided to go Pee Pee right then and there. Good stuff, but it gets better....
Then about 10 minutes later after I had managed to wrestle some clothes on him I came out of the kitchen to find Kannon with the blinds pulled up at the front window of our house naked with ALL his glory smashed up against the window doing some very advanced hip movements...
Good thing there just happened to be some nice elderly folks walking their dog out front enjoying the show....at least they found it amusing and didn't call social services for child indecency.

Kannon has never done anything half ass...he goes ALL out in a big way.

He put his boy tool on the sidelines for a bit, but has recently realized its presence once again in a big way.
The other day while I was dressing him he looked down and realized his guy was "hiding" in it's shell so to speak...
He goes "mommy it's gone"and freaked out.
He grabbed it immediately and was desperately trying to get the turtle out of its shell...
Good thing that only took about .7 seconds. Some things just don't change for men do they?!
Anyways, he was SO relieved that his boy tool had not suddenly disappeared.
So relieved that he has to do hourly checks on it...
Full on inspections of his junk.
Pants off, pants down and pat down of the concerned area.
Mind you, in our home this is fine...but at the grocery store its not as cute.

He decided today that he needed to put some hand sanitizer on it.
After hearing a shriek from the bathroom I found him with a very surprised look of anguish on his face...but at least he was clean :)
He also wonders if putting baby powder on it will somehow enhance it...like it needs dressing or something.
He is also very skeptical about the fact that his sister does not have the same tools as he does.
He realized this the other day while they were in the bathtub together.
He wasn't sure what to do about it, so he just pointed at her, looked at me and said "why"?
I really couldn't figure out an answer to such a big question...the best I could come up with that he would understand was "because mommy made her that way".
He didn't seem convinced.
In fact I got a bit of a glare...like I was hiding something.

Maybe this is too long of a rant about this topic, but it cracks me up to see how wonderfully new this is to him...even if it is for the second time.
He is truly fascinated with it and is really concerned about "it".
I love when he shows signs of somewhat normal behavior in regards to child development...
He is showing emotion, reaction, and patience that sometimes escapes him in other situations.

Even if it is quirky, and sometimes awkward, I will continue to let Kannon figure this situation out all on his own.
I know he will come to a conclusion someday about the matter...appropriately so...hopefully...