Aware

There is something that has been on my mind lately….finding the right words has proven challenging though. Here is the thing…April is Autism Awareness/Acceptance month. What hit me like a ton of bricks this year though is that while I Love my children very VERY much…There are parts of Autism that I do NOT want to accept.

I am AWARE that Life with Autism is not easy, that there will be days when I just want to crawl under a rock and cry.

I am AWARE that Meltdowns due to sensory Overload are Par for the Course.

I am AWARE that Elopement happens FAR more often than I would like ( Frankly ONCE is one time too many, and was enough to scare the breath out of me).

I am AWARE That My child can’t/wont/doesn’t tell me much if anything at all about His day, His world.

I am AWARE that There are many times ( More often than not) when my husband and I have to decide wich one of us will accompany the girls to their various events while the other stays home with our son.

I am AWARE that most people will never understand autism, and will judge EVERY detail of my life as a result.

And…..

while I am AWARE of all the stuff listed above, that does NOT mean I ACCEPT it all….

It HURTS when I don’t know how to help my child

It Tears me in two when we Can’t do things as a Family

It TERRIFIES me when my child Bolts from school, home, the ball field, in the store…ect.

It HURTS when People look at me like I am a Bad parent, tell me I am a Failure, say things like “He is just a spoiled Brat”

I REFUSE to accept that my Husband or I did something wrong, and that is the reason why we have 2 children on the Autism spectrum.

I REFUSE to see autism as “the end of the world”. My Children, ALL…THREE…OF…THEM are a Blessing. Autism does not define them, it is not ruining my life, or theirs. They are all precious and beautiful in their own ways.

Autism Awareness/Acceptance month may be “Over” for the “neurotypical” world….but Believe me when I say I am AWARE EVERY Day, and while I Love and ACCEPT my children, I REFUSE to ACCEPT the judgement, I Can’t Honestly say that I accept the pain and tears that fall OFTEN ( yes, sometimes Daily)…that are falling as I type this.

Autism Awareness~30 Days of Snapshots 2012: Day 23

Almost a Year ago we Packed up everything we owned and moved. We Didn’t move Far. We Moved because we needed a bigger house. When we moved we left behind something Money can NEVER buy, something FAR more precious than a Bigger house, FAR more Valuable than all the possesions in the world. We Left behind a Circle or Friends who Love my kids. These Friends do not see Disability, do not see age, do not see color, they are just FRIENDS. Yesterday we took the kids over there for a visit, and it was the Highlight of my weekend.

My Facebook Status Yesterday ( Dak got me up at 4am and I was EXHAUSTED): Highlight of My weekend….took the kids over to Visit their Friends on the Court today….Watching Dak PARTICIPATE, Take Turns, and Play Duck Duck Goose on the Trampoline makes the lack of sleep, coffee overdose, and no Nap ALL Worthwhile!!!!! ( and YES I took Photos :P)

This group of kids, with mine included ranges in age from 6 to 14. Two of them are autistic, one of them is fighting Cancer, NONE of this slows them down. When they are together, it’s like it all just fades away. Sure they have moments when they fight…that’s kids for you, BUT NOBODY Messes with them.

If This is our Future, then I would say we are in good hands…because of Kids like these…

.♥Playing Duck Duck Goose ♥

( and yes, Dakman not only took turns, but Participated the WHOLE time, Interacting, laughing, smiling)

Autism Awareness~30 Days of Snapshots 2012: Day 14

Author Note: This should have been published yesterday, but I had to finish the Photos before I could post it

My Facebook Status after Baseball Today: “Home from Dak’s Miracle League Baseball Game. LOVE Saturdays for SO many reasons! I Get to watch My boy play Baseball, I get to spend time with other Parents who Understand the roller Coaster that is raising a Special Needs Child, AND I get to watch my Girls interact with thier Friends who understand thier Roles as Siblings….Miracle League is Truly one of the Biggest Blessings in my Life.”

Miracle League Baseball because “Every Child Deserves A Chance to Play Baseball.”

As a Mom of Special needs children, This truly is one of the Biggest Blessings in My Life.

It has become more than just watching my son get a chance to play baseball…

 it has become something more….

a chance for me to talk to other moms who know what it is like to love a child with special needs….

 it has become a way for my husband to connect with his son…

 to watch them do something we thought they may never get to do together….

It has become a way for my “NT” child to connect with other “NT” siblings who understand what she faces with special needs siblings….

It has become more than just a game, it’s a community, a family, and I am blessed to be a part of it….

♥I will leave you with this Photo…

one of my favorite moments…

Dakota steals home so He can go sit down in the dug out and get a drink

( He used to just walk off the feild, so This is progress  :P) ♥

♥ and In Closing…The Miracle League Song…

I simply do not have the words to Thank all of the people who work so hard every year to make this happen…

The Buddies who volunteer to help the kids who need help…

the coaches…

The Businesses and churches who sponsor teams….

The amazing woman who handles all the coordinating, organizing…

Thank you each and every one for giving parents like me one of the greatest Gifts in the world…

Autism Awareness~30 Days of Snapshots 2012: Day 10

Ok, so My goal to post everyday isn’t going so well this year. The challenges of having two teenagers on the autism spectrum in the house are, well…overwhelming at times. We have seen regression in many areas…behavior issues we have not seen in several years have returned. To say I am exhausted would be a VAST understatement!

Today as I logged in to Facebook, I saw a Blog post that struck a chord with me, Hate the Autism/ Hate the Child?  It got me thinking, and I mean REALLY thinking. I have said in the past that my kids don’t need “fixing”, that they are not Broke, just wired different, and I stand by that statement. Does that mean though, that I LIKE every behavior? No…There ARE things they do that I would change. My Heart aches when my son can’t tell me what is bothering Him, and yet I KNOW something is wrong. And that gut wrenching fear that hits when He decides to take off from school, church, or home…yeah I could live without that. It is no different than when I tell my youngest to stop whining, or some other behavior she should not be doing. I Guess what I am saying is this…I Love ALL three of my kids, in SPITE of Autism, in SPITE of those behaviors that I don’t like. God made them EACH Special, and regardless of their challenges, they are ALL Blessings. There are days when my Patience is SHOT, when I want to scream ” I Can’t TAKE IT ANYMORE!”, when I just want to go off and hide somewhere.

Yes, There are GOOD things loving a child with Autism has taught me…like how to appreciate the simple things, to take life at a slower pace, the value of a smile, a hug….One of my favcorite quotes is…

“You can complain because roses have thorns,

or you can rejoice because thorns have roses”

I have learned that wether it is with my kids, in my marraige, or in life in general If all I focus on is the Negative, I am going to be miserable, but I Can’t ignore the Bad all together either. Sometimes to see the Rainbow, one has to go through the storm first.  This past weekend, my Husband and I celebrated our 16th Wedding Anniversary. The road has not been easy, we have had our share of challenges, fights, and struggles, but we have learned a lot along the way….

Lessons learned in the 16 years I have been married to the AMAZING Man God Brought into my life….

 1.) NEVER fight in front of the kids

 2.) I MUST respect my Husband and Honor HIS Leadership. God placed Him as the Head of Our Household.

 3.) HONEST Open communication is KEY.

 4.) Resorting to name calling and fighting dirty won’t accomplish anything.

 5.) Don’t go to bed angry.

 6.) Even after 16 years, It is still fun to flirt with my husband.

 7.) No Matter how hard things seem, He is always there for me, I can depend on Him.

 8.) Without Trust, things unravel quickly.

 9.) I get more help with the kids if when He gets off work I don’t ambush Him as soon as He walks in the door. Give Him time to decompress first.

 10.) He needs “Alone time” as much as I do.

 11.) Submitting to His leadership does not make me weak, It is what God called me to do, and it actually makes me stronger. (Ephesians 5:22-33)

 12.) He can’t read my mind…If something is bothering me I need to TELL him, without backing him into a corner.

 13.) He worries about the kids as much as I do, He just expresses it differently

 14.) There is nothing wrong with being married for 16 years and still acting like newlyweds!!

15.) Even though I am a stay at home mom, that doesn’t mean I should stop dressing up for my husband.

 16.) I Love Him more today than I did when we met. The road has not been easy, but Walking it with Him by my side makes it all worthwhile.

 Our anniversary is April 6th….

16 years ago a Marine from Alabama and a Marine from Upstate NY said “I do” in North Carolina…

I Love you “Bama”,

For better or worse, for richer or poorer, in sickness and in health, till death do us part

 I am so Thankful God Brought you into my world in the middle of the desert in California!

Autism Awareness~30 Days of Snapshots 2012: Day 3

Snapshots, moments frozen in time…Precious memories…

This is day three in our Journey into what Autism Awareness means to me.

If you would like to start at the beginning…..

Day 1, 2012

Day 2,2012

Last year as we walked this snapshot journey, Our Husky, beloved dog and Friend Passed away and all three kids had a REALLY hard time dealing with the loss…(See Day 12,2011  and “How do I help them to say Goodbye?” )

The Healing Process began when a Friend gave my Youngest a Cherished stuffed animal, lovingly named “Wolfina” who goes EVERYWHERE with her…

The Healing Continued as we spent time on my Parent’s Farm…

surrounded by LOTS of Love and animals

*Helping Grandpa let the Cows out after Milking*

*Dak and Uncle Dave with Uncle Dave’s Dog…Buddy*

perhaps the biggest Highlight of the whole trip ( for the kids anyway) was getting to meet Aunt Hilary’s Horse, Cash…

There is something Amazing and beautiful to watch when my children get on the farm, and spend thier time around the animals. There is a wonderful connection, and I see a different side of my kids, almost like for brief moments in time Autism fades into the background, never completely gone, but it’s like relating to the animals relaxes them….the animals don’t judge, they just love, maybe that is the reason my kids seem to relax more around animals than people, they can just BE…

This past Christmas, after much discussion, and many months of listening to the kids ask for a new dog, and many tears over missing Fang, we decided to get them a pair of Black Lab Puppies for Christmas….

To the Beloved animals that lick tears away, Play fetch, Run, bring HUGE smiles and Laughter….

Our Family would not be complete without you….

You seem to understand when each kid needs to snuggle..

or run and jump…

You make LOTS of noise to let me know when something is just not quite right….

You Protect, Love, Play….all without question or judgement.

Trying to explain the loss of our Beloved Fang to Dak was ( and continues to be hard) but Beauty and Beast have stolen our hearts and are helping heal the ache.

♥Forever in Our Hearts…we Miss you Fang♥

Autism Awareness~30 Days of Snapshots 2012: Day 2

The Special Bond between Siblings….

2 with Autism, one “NT”…

and yet, they love each other….

Look Out for each other…

enjoy spending time with each other ( MOST of the time!!)

 

 *Spinning in circles and Laughing together*

*In thier Safe Place during a Tornado Warning…Keeping each other Calm*

*Splashing in Mud Puddles*

*She is His Little sister…

She is His Baseball Buddy…

She is His Friend”*

♥ They fight often, but they also share Precious Sister Moments ♥

I truly hope that As they Grow they will remember the lessons learned growing up together…

That their friendship will grow stronger….

That they will continue to look after each other and cherish the bonds they have that only brothers and sisters share….

That the compassion and awareness gained by growing up in the “Special Needs” community will stick with them forever…

Autism Awareness~30 Days of Snapshots 2012: Day 1

Last year for Autism Awareness Month I did 30 Days of Snapshots, Inspired by This Quote from a fellow Momma Blogger…

“To me, awareness is a picture.  It’s a montage of snapshots and video clips from the small moments that make up the life of a person with autism.  Littered within this media are the big and small moments; the moments that melt your heart and those that test your resolve; the moments that capture the ordinary and those that frame the extraordinary. They’re the snippets of video that you proudly post on YouTube for the world to see, and those that you preview through the view finder on your camera and ultimately decide to delete because they didn’t quite catch your child at their best.

To be aware of autism one must have that complete picture, because awareness is the sum total of these images.”(From red shoes, Autism Blues)

I LOVE the concept of looking at Autism in this light. Those who know me, know I NEVER ( well almost never) go anywhere without my Camera. It is always ready to capture those moments. If You would like to go Back and see the posts from Last April, They are all Linked down the right hand side under the Title: Autism Awareness 30 Days of snapshots. I will be doing this again this year as well, so lets begin Our Journey shall we?

This year the CDC released “New” Autism statistics…..

Data & Statistics

Prevalence

  • About 1 in 88 children has been identified with an autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read article]
  • ASDs are reported to occur in all racial, ethinic, and socioeconomic groups. [Read article]
  • ASDs are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). [Read article]
  • Studies in Asia, Europe, and North America have identified individuals with an ASD with an average prevalence of about 1%. A recent study in South Korea reported a prevalence of 2.6%. [Data table Adobe PDF file]
  • About 1 in 6 children in the U.S. had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.  [Read article]

*Source: http://www.cdc.gov/ncbddd/autism/data.html

1 in 88

1 in 54

1 in 252

1%

2.6%

1 in 6…

staggering Numbers, but what I want you to know is this…. These are more than just numbers. They are PEOPLE. and behind each child, there is a family…loving them, guiding them, fighting for them at every twist and turn. ( see my Post  1 in 88…not just numbers, PEOPLE ). This year we confirmed that we have not one, but two children on the spectrum….

Although April is Autism Awareness Month, our families live with autism EVERY day….

Autism…Different but NOT less…

Miracle League…Because EVERY child deserves a chance to play Baseball….

This year, like last year as you join me on this 30 days of snapshots journey I hope you will see that…

Autism is not a Label ( Those go on soup cans) but a Diagnosis….

The words “Your child has Autism” is NOT the end of the world, but an open door to look at life in a different perspective, to take things at a slower pace, to cherish the simple things…

That the child in the store kicking and screaming may not be just a “Spoiled brat”, but may in fact be in pain due to sensory overload….

that the frazzled parent trying to calm said child may need a helping hand, and certainly does NOT need you to stop and stare, give dirty looks, or make snide comments like “Can’t you control your child?” or “you should have left that brat at home” ( and the list goes on…)…

April is Autism Awareness month….

what can YOU do to reach out and spread the word….

to help a family walking this journey…

to educate yourself…

Remember people on the autism spectrum do not need to be “Fixed”. They are NOT broken, and do not need to be forced to fit into society’s idea of how we should act, talk, think, look, ect….

They need acceptance, compassion, and understanding…

not judgement, criticism, and prejudice.