Wednesday, November 27, 2013

Truly Thankful

I don't know if you have been paying attention to the news or the latest FB postings but there was another young man with autism who went missing in New Jersey.

He has been away from his home, from his family, from all that he knows for a week now.

As an autism parent, that sends chills through my spine and worry in my heart.

That is until this morning when my sister-in-law texted me this...

Autistic Teen from NJ Found Alive

New York News

I know this young man is not my child but he is one of the autism community and I have to say, my heart skipped a beat and a relief came over me because that could easily be any of my children and now, he is heading home - just in time to have Thanksgiving dinner with his family.

This is something to be truly thankful for.

There are many things we take for granted in our lives, even the simplest of routines and comforts that we rely on every day.

The one thing we cannot take for granted are the people in our lives.

Whether they play a large role or a small role, they shape our lives and give it meaning.

This Thanksgiving season, really take a look at the people in your lives and how they impact it in a positive way.

Focus on the good things around you and throw the negativity out with the trash.

Our lives are far too short to keep the baggage of what holds us down.

Tomorrow, really be thankful for all that you have in your life - your family, your friends, your home, yourself - yes, yourself.

Don't take anything for granted because it could all be gone in an instant.

Much love to you and yours during this most special of holidays!

Tuesday, November 26, 2013

It's Scary Being Good

Okay, yeah, I know the title is probably making you wonder "Oh boy, what did she do now?!"

Well, you see I was trying to do a good deed.

It's the holidays, people are down on their luck, I have a heart and can't help seeing people in need.

While at work today, a young man - between 16 - 18 came in from riding his bicycle and asked to use the restroom.

He looked decent enough - clean shaven, hair trimmed, he was wearing one of those camel pack things that runners and cyclists use so I said "sure" and pointed to the rest room.

I immediately got on the phone with a friend and told her in "Quedate en el telefono con migo" (Stay on the phone with me) and explained what was going know, you can never be too careful. She knows that if anything happens to me she is to immediately call Mr. Big - she is my lifeline sometimes.

Well, we were on the phone for 10 minutes - I was expecting a pee and go.

The toilet flushed twice and I hear rustling in the bathroom.

Panic and nerves set in.

I look next door and notice that there are people at the salon that is being worked on so I go over and talk my new neighbor and say "I need a man"...needless to say, the look I got was a perplexed one.

I again explained what was going on, while still on the phone with my friend and they agreed to come over to my office with me.

My neighbor is a lady from New York with a much stronger personality than mine so she was the perfect person to be my physical back up. I told my friend that if I don't call her back within 5 minutes, to call Mr. Big.

So we went into my office and my neighbor asked the kid if he was okay - through the door - he said yes and prepared to come outside.

My neighbor and her contractor stood at the front door with me as we talked all things turkey and waited for the kid to leave.

He meekly walked out, said thank you, and got back on his bike.

I closed the door and locked it.

I immediately called my friend and she said that she was getting ready to call me and that if I didn't answer, she was calling Mr. Big...I only had one minute left and she was sticking to it.

I know it might have been a stupid idea allowing this kid to come use my restroom - but I hate judging people because there is more to a picture than what we see but at the same time, I still judged because I became nervous and scared.

Yes, it could have been worse - like a 1000 times worse.

I'm just glad it wasn't.

Monday, November 25, 2013

Why So Blue?

I recently posted about my, you could say, less than satisfied opinion about Autism Speaks's approach to all things autism.

As I was doing my nails this weekend I looked carefully at the color that I chose to do them.

It has been my go to color for as long as I can remember.

It is the color that I and pretty much everyone associates with autism these days.

The funny thing is, that it wasn't the first set of colors that I saw when autism came into my was one of a group of colors that made up a puzzle.

These colors were red, yellow, and blue - they illustrated the different pieces that is the puzzle of autism - that everyone with autism is not the same. Each piece is different in shape and color but yet some how connect together.

Some pieces share the same color but not shape or same shape but not color. Some pieces are the same.

This is the diversity that is autism...there are differences, similarities...but it is still a puzzle that needs to be worked on and put together with care and love and dedication.

The color is blue...according to WikiAnswers (the only way I could get an answer) the reason behind this is because autism affects mainly boys and blue is the most common color that boys prefer. Okay, I get this.

But then why is it that the main shade of blue that is  focused on is the color of Autism Speaks?

The color of an organization that clearly does not speak for our children, adults, and families living with autism.

Who chose that shade of blue to be the color of autism when there is a spectrum of colors that clearly identify the spectrum of those living with it?

Why do I care?

Maybe it sounds stupid or trivial but the fact that a particular color identifies our families and connects them with a group of people that do not truly speak for our population bothers me.

This doesn't mean that I will stop wearing light blue because well, unfortunately it is the color accepted by many autism organizations - especially two of the ones I am passionate about - Train 4 Autism and Surfers for Autism. It is also one of Princess's favorite colors.

I just wanted to illustrate how ironic it is that not only are our lives "spoken" for by this organization, but even our attempts to differentiate ourselves from said organization is still connected to them by this one simple thing...a shade of a color.

Wednesday, November 20, 2013

There is Still Hope for Our Future

I haven't been in the mood to write lately once again...

Its these ups and downs that drive me crazy because they are just like emotions and anxiety, even when the way to work through the insanity is to write.

Make sense?

But then I come across the videos that I saw this morning on Teen Nick regarding the most recent HALO awards and I had to share this with you...

Why was I looking at Teen Nick?

You see, the HALO awards were this past weekend and it featured something near and dear to my heart...


It featured autism through another thing that is near and dear to my heart...

Surfers for Autism

One of the amazing and wonderful volunteers, Miranda Fuentes, was honored as a recipient of the Teen Nick HALO award for her work with the many children and volunteers that connect through Surfers for Autism.

Her inspiration was her brother.

Her smile is infectious at all events.

She connects with the children she works closely with.

She is an inspiration to many people her age.

Her heart is enormous.

I am so glad that she got the recognition that she so deserved.

I am also glad that autism and the wonderful effects of water therapy were brought into the light in such an amazing and public way.

So I recommend you to check out the Teen Nick HALO awards site here and check out the many videos as well as the other honorees and the amazing things that they are doing for their communities.

There is still hope for our future after all...these young people have given me that hope once again.

Monday, November 18, 2013

Stop Speaking and Start Listening

I have submitted this post for the "This is Autism" Flash Blog - because those with autism like my children, like countless children and adults with autism like them...they are not what the loudest voices are screaming out - and together, we will work to re-write this wrong.

Re-Published 11/18/13

It's been a while since I have done an autism related post but this is something that I have to get off of my chest because I can't continue to let others think that they can speak for my children.

You see, I'm a big supporter of all things autism and awareness related.

I believe the more we spread the word the better awareness we have and the more acceptance there will be of our children and adults with autism.

I love that there are organizations out there willing to get our message across and raise their voices to those who need to hear our cry for change.

The thing is that the loudest voice, Autism Speaks, is well - screaming and shouting that our lives, ALL of our lives are, well, hell and that we are merely existing instead of living with our children and family members with autism.

Autism Speaks co-founder Suzanne Wright, in a call to action for a national plan, wrote this piece. I'm not going to put her words on my blog because I just don't care to see them on the digital pages I choose to express myself on. 

If you choose to read the posting, you will see how she paints our lives as mere existences of bodies trying to survive every day through the loss of our children. That our families are torn apart because of this disease called autism. She didn't use those words in exactly the way I've grouped them but that is because she has clever people who proofread her work to make sure she doesn't say the wrong things but guess what - she is.

She is not speaking for me. She is not speaking for my children. She is not speaking for my friends. She is not speaking for many families out there that do not see their lives as merely existing in the day or surviving until tomorrow.

Each family has different experiences. We cannot lump each other into a one-size fits all mentality because if so, we are doing our children, adults, families, caregivers and everyone touched by autism a huge disservice.

And yes, I say touched by autism because that's what we are - we are touched. We are not inflicted, afflicted, diseased, destroyed, impacted, etc. We are touched because those we love touch our hearts and our emotions.

My children are not like your child with autism, or my neighbor or my friend's, they are different - they all are part of a spectrum of autism. We cannot put them as a whole group and expect a standard plan to "fix" them. Especially a plan that does not consider them and their differences.

Yes, there are days that are hard. There are days where we cry and we feel pain. We are human and we have emotions. 

Nobody wants to see their child become frustrated because he can't get the right words out of his mouth to say what he is thinking or feeling. 

Nobody wants to have to clean up after their 9-year old son who has just urinated on the chair because he took your statement of "go pee-pee" literally and actually went pee-pee where he was because you forgot to say "go pee-pee in the bathroom". 

Nobody wants to have to watch their child rock and bang his head against the car seat because he is overwhelmed with some of the simplest of sounds while tears stream down his face. 

Nobody wants to hear their child scream that he hates his life because he is different.

Those statements are my life - those are 4 different children with autism.

But yet, that is not all that they are either.

They are children who can draw amazing pictures with such precision. 

Children who can sing beautifully even though they don't speak. 

These are children that can make you laugh at the silly things that they do. 

These are children that give hugs and kisses and bring light to my eyes.

And yes, our family is a "torn" family as Mrs. Wright would call it but not because of autism. If anything, autism was the one thing that my family was able to find common ground on. It was other things that caused our family to be "torn".

And yes, my children do not live with me, but it is not because I could not "deal" with them - it was because they deserved the continuity and stability that is so important to them and their continued success. 

So Mrs. Wright, how dare you say that you or your organization speak for my children when you clearly do not know them or what my family really needs?

They know what they want, they know what they need. You just have to listen to them. Pay attention to them. They will tell you in their own way. You have no right to speak for them.

There are many other things about Autism Speaks that go beyond their blanket approach to autism. 

There are the videos that they have released such as Autism Every Day or I Am Autism that depict "our lives" as hell and torture. I am not going to post them here because again, I do not want them on my page - if you are interested in seeing them, you can do a YouTube or Google search. One video went as far as having a parent speak about how she wanted to end her life and that of her autistic child but chose not to because of her other child at home. How is this helping our children?

The words and videos that Autism Speaks puts out there as "our voice" places our children and young adults as feral animals and diseased creatures that need to be cured, that need to be pitied, that need to be saved.

No - I'm sorry - my children do not need to be cured, they do not need to be pitied, and they definitely do not need to be saved.

They need to be accepted. They need to be appreciated. They need to be loved.

They need to be able to belong and considered people because that is who they are.

They need to be given opportunities to thrive and grow.

They need to be given resources to help them live every day and use the many talents that they have but are so often overlooked because they are judged by the loudest voices that do not speak for them.

If you really want to know what a life with autism is like - read the many blogs on my "Potential Handbooks" listing. Those are real families living with autism. 

They are enjoying the milestones and the love and the smiles while working through the hard times. 

They are a community of people who work together to support one another and say "you're not in this alone".

Those are the true voices of autism.

So Suzanne Wright and the rest of the people at Autism Speaks - its time to stop speaking, and time to start listening.

Thursday, November 14, 2013

Much Needed Time

Hey Everyone!! I am excited and happy to tell you...

My daughter, my now 12 year old daughter, held my hand!! By her own free will!!

Yes people!! This is AMAZING!!!

How did that happen? Well, let's start at the beginning...

You see, her birthday was last week and in order to celebrate it with her I picked her up on Friday and took her to dinner, some shopping, and a movie.

First when she got in the car, Princess told me she was excited....Yes, you read that right, she was excited. This is the same child that I have been having the misconnections with. I was over the moon happy when I heard her say that.

We went on our way to dinner - there is a Johnny Rockets connected with a Game Day game center. She had never been to a Johnny Rockets before and so this was interesting.

She perused the menu and immediately asked if they offered chicken fingers - typical - LOL

Of course they did and so we ordered dinner and she was all smiles. See....

Look, they even brought us a little bowl of ketchup with a smile.

After dinner we went to have some fun at Game Day.

This girl had an amazing time!!

She played the crane/claw games and was able to score a Minion, a Penguin, and a giant textured bouncy ball.This girl is good!!! Again, she was all smiles.

We tried the dance dance game (well, she did, I didn't) not too much success there but she tried.

Then it was on to some bowling...

Let's just say people, there were 2 strikes in her game. Did I mention how awesome my daughter is?

After Game Day it was off to some shopping.

We stopped into Ron Jon Surf Shop and she found herself this beautiful necklace with a purple flower and a watch that also was purple. She looked at me with her puppy eyes and I couldn't resist so I of course got them for her.

We looked at some other items and we came across a table of Bandeaus and she fell in love with this one...

She told me that I should buy it for myself because I used to wear my bandana all the time but haven't since I lost it during a surfing event.

My daughter knows me! I love it! And so, I did.

Then we went to FYE and she came across a Big Time Rush CD that she just HAD to have and so, I told her that she could buy it with her birthday money. She was hesitant at first because I told her she would have to hand it to the clerk and pay for it herself - that's a big deal - but she really wanted it so I gave her some moral encouragement.

On the way to the register, we came across the $5 DVD bin and rummaged through it and found the movie she has been searching for "like FOREVER!" (her words).

Again, she was told that if she wanted it she had to present it to and pay the cashier herself.

And you know what? She DID IT!!!

Proud momma right here - big milestone for her and she was actually glad she did it.

From there we went to the movies to go see Free Birds - not my first choice - but she wanted to see it (I was partial to Thor or Ender's Game)

The local Minicon place was taking pictures of movie goers in front of the Thor pictures - she was happy to participate.

She even wanted to take a picture with me!!

We did have a conversation before the movie started - she said that this was a great birthday present. She brought up her 9th birthday...the one that happened just a week after her father and separated - she said that she didn't like it. That it was NOT the best birthday present.

That crushed me but I told her that just because we were no longer together, her father and I loved her and her siblings very much and that things are better now that we are not married - I asked if she agreed and she said yes, and she smiled, she reiterated that "still" she didn't like it - but smiled and nudged me as I passed her the popcorn.

She got it off her chest after a long time of holding it in - I was proud of her for this.

I can't believe it, my big girl is growing up!

As the lights dimmed down we settled in and enjoyed the show.

She got cold during the movie and so we cuddled - we CUDDLED people!! This is HUGE!!

At the end of the movie, before we walked out - she told me that she had so much fun and was very happy.

THIS people, THIS, what happened next, is what made my night...

We walked to my car and she went ahead and held my hand.

We haven't held hands in like forever!!

We needed this time together so much. We needed to just be mother and daughter.

Wednesday, November 13, 2013

Just a Few Words

I started writing a post yesterday - a very long one at that about how I was hating myself yesterday because I haven't been able to run in 2 months due to an unknown issue with my ankles. Something beyond my control was causing me to hate myself and the way that I look.

Then I read over what I wrote so that I could publish it today and I thought to myself..."What the fuck?!"

This is what is bothering me?

This is what is plaguing my mind and causing me to act like an idiot around the people I love the most?

Yeah, I was not on my best behavior for part of the day yesterday.

I sheltered myself and kept quiet because I made a mountain out of a mole hill in my head.

I was angry at people that I did not need to be angry at.

I isolated myself and just withdrew and did not know what to say.

Then later in the night after we returned home from dinner I said something to Mr. Big about what was bothering me and after I said it, I laughed at myself at how stupid I sounded. Especially after his reply because it reminded me that what we were discussing was something that never bothered me before and that I let the insecurities in my head get to me.

Something trivial that doesn't even deserve to be mentioned amplified my craptastic feeling about myself that it made me miss out on spending the little bit of time that I have with Mr. Big and just feel like shit about myself.

I let my mind go to a cloudy place where emotion and reason and just plain stupidity came over me and fogged who I truly am.

Then this morning I read this post by one of my favorite bloggy friends Tamara of Tamara (like) Camera and I stopped at these words...

I'm aware of the darkness. I beware of darkness, however, I follow the light and I follow it well. I know how to see its bright glimmer and I know how to feel the warmth that radiates from it.

Wow! Just wow!! These words hit close to home and reminded me that when things get hard and dark for me, I need to remember the positives and focus on them to see me through and get out of the negative thinking going on in my mind.

Earlier I said "Something beyond my control was causing me to hate myself and the way that I look." - well, it is not beyond my control - I can control these thoughts - I will do it.

Beyond my insecurities about myself, beyond my feelings of doubt, beyond any negative thoughts and emotions that come into my head - is the brightness that will lead me out.

I'm going to focus on those very wise words of a very dear friend...

Thank you Tamara <3

Wednesday, November 6, 2013

The Worst Feeling Ever

You know that feeling that you get after you have had a horrible nightmare that feels so real?

You know that feeling that keeps your heart racing, your body sweating, and your head pounding as if it is a ticking time bomb ready to explode?

Yeah, that happened to me last night.

I had one of those nightmares.

The type that you wake up to not being able to breathe with tears streaming down your eyes because if just felt like it had happened right before your eyes and there was nothing you could do about it.

What disturbed me in my sleep?

A nightmare of seeing someone I love beyond words and logic on life support.

A nightmare of a child clinging to dear life with tubes and wires all around to ensure the ability to breathe.

A nightmare of rage and anger at not being able to stop or control what was going on and rescue this precious and perfect little person.

A nightmare of my youngest daughter Baby Girl, on life support, looking like an angel in the deepest of sleep.

There was no logic behind the images in my head.

I can't recall what happened in the moments that led up to my precious child being so ill.

There were no doctors to turn to in this horrible nightmare.

There were no answers.

All I remember is yelling and screaming "You were supposed to watch her!"

When I awoke the image was so engraved in my head that even when I close my eyes now, I still see it.

Her Victorian doll face, her light brown curls covering her pillow, her eyelashes so delicately closed, the lack of color to her always bright cheeks.

It was horrible.

The tears could not stop falling.

I had to leave my room. I had to leave my bed. I had to leave the place where these images came so freely into my sleeping subconscious.

I never want to feel that way again, even in a nightmare.

I never want to feel that way in the real world.

I don't think I could handle it.

There would be no walking away.

I just want to see her smile and laugh and play - that is the only way a child should be.

Tuesday, November 5, 2013

Unbreakable Bonds

Hello peeps!! How are you? 

I take it that you all have survived Halloween and managed to hide the remaining candies from your children if you haven't eaten it already yourselves.

This is only the start of the sugar highs and regrets about calorie consumption!! 

Well, this post is not about candy but to me, its just as sweet.

This past weekend I was driving with the kiddos to my house and as usual, there was swapping snacks and sharing of iPhones. Complaints that "I just got it!" or arguments about who gets to sit with who - even though they always sit in the same spot because strategically, that's the safest for them and my sanity.

Well, as usual, Silly sits next to Princess...and this is what I am writing about...

As we were driving, I was watching these two and my heart just skipped a beat - nothing in particular happened just a realization.

You see, there is something about the relationship between these two - they have this unique bond.

She is 11. She is growing up and going through those awkward and terrifying tween-teen years (she will be 12 on Thursday - help!!) and along with that comes the "I know" and "Ugh" attitudes about life and the people in it - except when it comes to him.

He is 9 - on the outside, on the inside he is more like 3 or 4. He is a loving, smart and funny kid but with the stimming, the scripting, the noises, the flapping, and obsessiveness on particular things, it is hard to make connections - except when it comes to her.

These two children of mine are the perfect blend of sibling love.
She understands him like nobody else. She knows what sets him off and what calms him down.

He looks for her and wants to show her everything he does.

She can decipher what he is trying to say when all I hear is words that do not make sense put together. (Really, he was saying some words together but I couldn't figure out what they were referencing and she immediately knew he was talking about Thomas the Train)

He asks for help directly from her "Help please Princess."

She has the patience of a saint when it comes to her brother, when so many other people don't.

He seeks comfort from her - he lays on her lap in the car when he is tired or pokes her thigh when he is upset and crying so she can rescue him.

I don't know how this bond developed but it has always been there.

She has always been his rock and his solace.

I am so glad that they have each other. 

I am so glad that the love of family is there among the screaming and fighting.

I am a truly blessed momma.