Tomorrow is April 1st….

April….Autism Awareness Month….Autism acceptance month….A Month where people who don’t pay much attention the rest of the year turn their eyes on the Autism community.

A month of “Light it up Blue” and profile pictures on Facebook, and the myths, facts, and blog posts fill the internet.

All this is well and good. We need more awareness as a society. We desperately need more acceptance and understanding.

Tonight I have been looking back through posts I have made in Aprils past….reading over things I have written, wondering what I would say this year. To be honest, I am still not sure, will have to take things one day at a time I guess. I MAY do a 30 days of Autism in Pictures again, it’s been a while since I did that, and that was , to me, a beautiful way to showcase what our flavor of Autism looks like. Imagine that, me, a photographer, expressing my thoughts with words and photos. ( LOL)

For now….Here is a one stop list of posts I have written that are meaningful to me as we head into another April, not including the 30 days of snapshots posts, as those are linked off to the right hand side…..

This is Our Autism

“Autism is love, Unconditional, deep love, stronger than any meltdown, bigger than any low. It is a love that keeps me going even on those days when I want to give up. It is a love that enables me to pick up the pieces, calm him down when he falls apart, to fight with doctors, to stand up for his rights at school. It is a love that is like nothing I have EVER known in my life.”

This is Our Autism revisited

“Autism is NOT the end of the world.

Autism IS beautiful

Autism is NOT Despair

Autism IS looking at the world differently

Autism is NOT a disease that is contagious, or in need of a cure. My kids do not need Fixing. They may need help in some areas, and a little extra support in others, but they do NOT need to be cured, or fixed.

Autism is Different, but NOT Less…”

There IS Hope!

“It is a Powerful thing! When someone loses hope, it is dangerous. Hearing the phrase “Your child has autism” Can be a very devastating thing to a parent, it’s true. The road is hard, it is an uphill battle, this I wont deny. There is grief, anger, sadness, days I feel overwhelmed. I cry, scream “Why??” , but I cling to HOPE. NOBODY , not a Doctor, Family members, even strangers, should EVER lead a parent raising a special needs child to think there is “No hope”.”

Aware

There are many others, and as I read through each of the posts I have written, I realized each post I have written is important in it’s own right. some made me smile, some made me laugh, some brought tears to my eyes, reminders of the not so easy days. This has been, and continues to be a roller-coaster of a journey, and I am incredibly thankful for the blessings that are my children. I am thankful God has blessed me with gifts of writing and photography, that I can capture the moments, that I can help others along the way. I have been reminded tonight of why I write, why I need to keep writing.

For now, I need to go try and sleep off this Migraine I have been fighting off all day. I will be back at some point tomorrow…..

 

This is Our Autism…Revisiting a previous Post

Back in June of 2011, I wrote : “Autism is love, Unconditional, deep love, stronger than any meltdown, bigger than any low. It is a love that keeps me going even on those days when I want to give up. It is a love that enables me to pick up the pieces, calm him down when he falls apart, to fight with doctors, to stand up for his rights at school. It is a love that is like nothing I have EVER known in my life.” as a conclusion to a Post titled “This is Our Autism” which was in response to a question a Fellow Autism Momma, Blogger, and Military wife, who also happens to share the same first name as me posed. The question “What is Your Autism?”

I Have been doing a lot of thinking about this again, in light of something that is going on in the Autism community. Suzanne Wright, co-founder of Autism Speaks, and grandmother to an autistic child, took time just this week to call for a National Autism Plan, based entirely on her opinion (which, therefore, is the opinion of Autism Speaks) that autism has “stolen” three million kids, and is making those kids’ families miserable. Here is a snipet of what she has to say….( You can read the full post Here, but PLEASE if You do….Take the time to read the COMMENTS, to hear the voices that are speaking out.)

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  

This is autism.

I am angry, The above comments made by an organization claiming to speak for my children, my Family, and so many others in the autism community has gotten it SO wrong. Am I saying life with Autism is easy? NO! But it is not something that needs fixing, or  a cure either. Yes there are times when my son wanders, and my children climb on furniture, and raid the fridge…..but Guess what, That is Part of having kids! I can remember , as the oldest of 4 kids growing up….Couch cushions strewn across the floor became rocks and if you stepped off onto the floor, You melted in Hot Lava, so we jumped from cushion to cushion, couch to chair…you get the idea.

When my non verbal child wanders, it scares me to death, BUT I have learned ways to keep Him safe, and still allow Him to explore the world We live in. I have learned to read His cues, and He has found ways to let me know “hey, mom, I am done and I need to go home”.

Autism is not, and never will be the end of all hope. My children are amazing, brilliant individuals. My daughter draws the most amazing artwork, a very visual and creative thinker. My son can make my computer do things I had NO clue it could do. They are NOT Broken!!!!! God made them special JUST the way that they are, and for an organization like Autism speaks to take the power it has, and irresponsibly feed the fear and lack of hope that society piles on families goes against everything I have fought for. I am not saying that it is easy, FAR From it. I  sadly lament not enjoying the parenting experience I always wanted and thought I’d have; birthdays, school, church, Dances, Concerts, slumber Parties, any social gathering for that matter, even bowling or going to the grocery store can feel like I’m being beat by this awful disease! I have days when I just curl up and cry, When I listen to friends complain about how their teenager spends too much time on the phone, or breaks curfew, is over board boy crazy, ect, and I look at my daughter who seems to have no interest in boys, didn’t ask for a cellphone until she was 15, and still RARELY uses hers, doesn’t live at the mall. I am Thankful she has a firm grip on who she is, and that she doesn’t look to her peers for acceptance,or approval, but I would be lying to you if I said I didn’t sometimes ache for those “typical mom moments”. There are sleepless nights, and meltdowns, sensory issues, and trials and hardships…But nothing in life is easy, and a little love and patience goes a long way. Sometimes I feel like I mourn the death of the parent I would be as much as the child I thought I’d raise. I know my Husband mourns those Father son bonding moments…Football, Riding dirt-bikes, ect. , and I know that there are things I will never be able to do with my daughter, like take her to see her favorite Boy Band in concert…it’s too crowded and too loud. There are days when I actively plan ways to live longer and take care of myself better because I know I have to be here to take care of my son. No one else will ever be willing or able to do it. Some people have the luxury of money or extended family to rely on, many of us do not. Should we make the best with what we’ve got? Absolutely, but that doesn’t mean pretending to the rest of the world that it’s a “gift” or anything short of an ongoing challenge. They don’t advertise Boot camp as a Glorious Vacation in Paradise, neither should they make autism out to be just something “different than expected”. That would also be completely irresponsible & untrue. Autism is a spectrum, and there is no One autism. It is challenging and some days it seems down right impossible, BUT it is NOT the end of the world.  There was a time when I lived in fear of what tomorrow may hold, BUT I have learned that when I focus on the unknown and worry about tomorrow I miss today’s joys. My children deserve to be loved, and accepted for WHO hey are, not shunned and feared because somebody only hears the word Autism. To say that my family is not Living, that Autism will break me, that my marriage will fail because Autism causes too much stress is fearmongering, and there is NO PLACE FOR IT!

Autism is NOT the end of the world.

Autism IS beautiful

Autism is NOT Despair

Autism IS looking at the world differently

Autism is NOT a disease that is contagious, or in need of a cure. My kids do not need Fixing. They may need help in some areas, and a little extra support in others, but they do NOT need to be cured, or fixed.

Autism is Different, but NOT Less…

So, this is a glimpse at My Family…..and Yes, We ARE Living, ENJOYING the moment to moment. Because Life is not the Breath You take, It’s the Moments that Take Your breath away!

41020080214_3654

DSC_0386 copy

DSC_0079 copy

DSC_0410 copy

IMG_4101 copy

and, one more….

DSC_0018 copy

Because the statistics say we should have divorced YEARS ago…I mean, Dual Military, 2 Children with Autism, Oh, we married too young, yeah, we have heard it all…all the reasons why we would never last, and I am not saying Our marriage is perfect, FAR from it! we have our ups and downs, but Autism has not destroyed our Marriage, in fact I think it has drawn us closer as we work together to make sure our children know that they are NOT broken, to give them the best love and home we can.  We are committed to each other, and to our children. When a mountain comes up, we climb it together. We have weathered many storms together, but To say we are just barely existing, ready to break at any moment, Autism speaks, You could not be more wrong. We don’t want or need pity, or fear. There is no place for fear, Only love, Hope, Joy, and Faith.

1 Corinthians 13: 3-7 {The Message}

“If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don’t love, I’ve gotten nowhere. So, no matter what I say, what I believe, and what I do, I’m bankrupt without love.

Love never gives up.

Love cares more for others than for self.

Love doesn’t want what it doesn’t have.

Love doesn’t strut,

Doesn’t have a swelled head,

Doesn’t force itself on others,

Isn’t always “me first,”

Doesn’t fly off the handle,

Doesn’t keep score of the sins of others,

Doesn’t revel when others grovel,

Takes pleasure in the flowering of truth,

Puts up with anything,

Trusts God always,

Always looks for the best,

Never looks back,

But keeps going to the end.

Dakota~Heart

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♥