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!

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and, one more….

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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

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These are the Moments…

Too often we underestimate the power of a touch,

a smile,

a kind word,

a listening ear,

an honest compliment,

or the smallest act of caring,

all of which have the potential to turn a life around.

 ~Leo Buscaglia

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It’s the Simple things that often mean the most.

This is the stuff memories are made of

The Moments that stick with us Long after childhood….

It’s Nerf Wars with Daddy….

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Blowing Bubbles….

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Splashing in Puddles…

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Sidewalk chalk….

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Digging in the dirt….

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Sandcastles….

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Board Games….

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Jumping in Leaves…

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It’s time spent together, just being together….

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Life isn’t about Fancy Cars, or expensive things, it’s not about the Vacations You take, or how much You spend…..

It’s about the day to day moments…

It’s Legos , Laughter, Leaves , Love, sunshine, sandcastles, Hugs, kisses, bedtime stories,

and yes, even doing the dishes, splashing in puddles, sidewalk chalk drawings,

the moments of childhood that go by so quickly….

cherish each dandelion, each mud coated Hug,

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Time is so fleeting, and is the most precious of all gifts.

Redirect Your focus, it’s not about all the things You can’t do,

its about the things you CAN do.

Things You DO that You think are unnoticed….

Believe me, they Notice. Our children are watching, they don’t miss a thing.

Wedding Reflections

Last weekend on Sunday, July 28,2013, My Youngest brother Got married, and I had the Honor of being a part of the Bridal Party, along with my Husband and youngest Daughter.

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As I sit here going through, and editing Photos from The day, and from Our trip to visit my Family, a few things keep running through my mind.

The Wedding was a Beautiful one, held in one of our Father’s Hay-fields.  The Morning of the Ceremony, However, It Rained. This added stress to the Bride and Groom. I am proud of my brother though. He faithfully watched the Radar, and the sky, and with the help of my father, the decision was made to wait it out, and sure enough, after an hour delay, the sky cleared, and the sun came out.  There is a lesson here. As they begin their married life, Through the years, they will have storms, rain will fall, but if they remember to dance through the rain together, the clouds will clear, and the sun will shine again.

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Another Thought from the day comes from my brother Himself. He posted this as His Facebook Status on Friday, August 2…“FB annoys the crap out of me some days, and there’s days when the only thing keeping me from outright deleting it is family and friends scattered about the country and world…..but I don’t think I will ever get over how awesome it is to see Hilary R. Settle sharing my name  if FB is still around when I’m 50, I’m still going to log on and think that is just awesome….I keep fiddling with the gold band on my finger….It holds a special meaning to me, not only is it my wedding band and a symbol of our love, but it was my grandfathers ring, the history I am wearing on my finger, and the future it signifies….it’s mind blowing, I only hope I can live up to being even half the man he was”

This is priceless. Our Grandfather’s love for Grandma came up during the ceremony as well, as My Other Brother was one of the officiants. What a Timeless example our Grandparents  left for us of a long and lasting love. We are their legacy, and I remember Grandpa welcoming my Husband into the family with open arms, and can only imagine the joy He would have shown at the wedding as David Married Hilary.

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There were many precious memories of the day, as there Usually are with Weddings. Aside from the typical First Kiss, First Dance, Cutting the cake type ones traditionally , There are a few that stand out for me….Like My Parents having all of their kids together for the first time ( spouses included) in a LONG time.

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and all 6 Grandchildren together…

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Watching My Parents Dance….

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Seeing the Love of my Life in His Uniform….

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Watching My Dad dance with His 3 youngest Granddaughters….

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Dancing with My Daddy….

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Watching Dak on the Dancefloor….

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and SO Many more…..

One of My favorite Moments came at the end of the night, as the reception was winding down, and my brother and His bride were getting ready to leave on their honeymoon. My Parents gathered all 4 of us siblings up, and my new sister, and Gave us Our Blessing. This is something they started when we were kids, and I have continued with my children, and it made me smile to hear it from my parents that night, even as a grown up, as we sent my brother and His new bride off to start their Life together. To me it was a wonderful way to send them off, to wrap up a beautiful day….

Numbers 6:24-26 

 The Lord bless you, and keep you:

The Lord make his face shine upon thee, and be gracious unto you:

The Lord lift up his countenance upon you, and give you peace.

Priceless

This weekend was Memorial Day Weekend, and for me it was an emotional one. Memories of childhood raced back to my mind, and I longed for simpler days…for Community Parades, and BBQ’s, Memorial wreath Ceremonies, small town USA celebrating our Nation’s True heros in a BIG way. There are other Factors in place that added to my rollercoaster of emotions this weekend…..Autism, Chaos of the school year winding to a close, kids routines all out of whack, and much more. Lets Face it, I was a MESS this weekend, and the tears flowed freely.

Yesterday, in the middle of all the tears, the ups and downs, the storms raging around me, God gave me a Beautiful Priceless Gift…..

My Youngest wanted to go outside and play in the sprinkler, so outside we went. She was having fun, but was sad that her older two siblings did not want to play with her. This was par for the course, as they are both on the spectrum and are usually content in their own worlds. The next thing I knew, my son came flying out the door in his swim suit, and for the next two hours I watched Him interact with his little sister. I got lost in teh harmony of thier laughter, and relished in the beauty of my youngest two children enjoying the day…together, without fighting, or whining, and of course, I took a Bazillion Photos….cause, well Like my husband likes to say, my camera is my 3rd eye!

When I pulled the Pictures off my Camera late last night, exhausted and ready to go to bed, I found one that captured the priceless beauty of the day perfectly….

There is SO Much I love about this Photo…
the fact that My Princess got QUALITY time with her Big Brother…
who is usually in his own world…
It’s Moments like this that melt my heart,
 that make all my tears worthwhile,
 that remind me that no matter how hard it gets,
 it IS worth every struggle,
 every fight,
every tear,
every sleepless night….
The Giggles and HOURS of Laughter that led to this Photo…
It reminded me that while we may be poor by the worlds standards,
We are rich and blessed beyond measure with priceless treasures that no money can buy.
 I am SO thankful that even in the midst of life’s darkest storms,
God blesses me with moments like this…
a reminder of what is truly important.

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!