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

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.

A Breath of Fresh Air

My Kids continue to amaze me! We just returned from a trip to visit my Family. This summer has been one of Non existent routine, and it has been interesting to watch my Routine driven children learn to adapt.  As much as they thrive on routine, it is I think, important from time to time to show them how to  learn to be flexible, because after all, life in the real world is full of changes, and not everything always goes as planned.

As we loaded up for the long anticipated, yet shortened trip, excitement was high. They could not wait to get to grandma’s house, and their lists of what they were looking forward to varied from one child to the next. With Autism along for the trip, there was, as always, much planning on the part of the adults…my husband, parents and I talked well in advance, planning out as much as we could. The Big event of the trip was my youngest brother’s wedding.

We had already been through one family wedding with autism in tow, so we knew how to prepare. We wrote the social story, we planned escape routes for meltdowns, we had a shadow for the boy, seeing as my husband and i were both in the bridal party, and my parents, being parents of the groom, needed to be free to enjoy the day as their youngest child married His sweetheart.

As soon as we arrived at my mom’s, and the truck was unpacked, The kids settled right in as if they had never left. This was a safe haven, and they knew it. The Boy changed into old clothes and headed to the barn with Grandpa, the oldest headed to sleep…we had been on the road for 20 hours after all, and the youngest settled in with grandma while my husband and I crashed as well. What a wonderful feeling to know that my kids are safe, and that I can rest….this is not something I get just anywhere, and it is something I cherish every time We go to my Parents house.

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The result of my parent’s house being a safe haven was, as always, that my husband and I were able to slip off for some much needed time alone. We had a wonderful escape to my Aunt and Uncle’s Cabin in the mountains, and it was a precious time of reconnecting, of much needed peace and quiet, no kids to worry about. I am not saying I don’t love my kids…they are my world, but anyone with special needs children knows, getting time alone is a RARE thing, and yet it is OH SO IMPORTANT! While my husband and I were enjoying Our Mountain escape, the kids enjoyed time with their cousins, and went to the zoo.

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The day of the wedding drew closer, and the hectic chaos that goes into Visiting from 20 hours away, plus planning a wedding collided in a whirlwind of non stop activity, and yet, the kids continued to go with the flow. Sure, we had a few meltdowns, but no major blow outs. As best we could, my mom and I wrote out what was happening when on a calendar for the boy, and that helped a lot.

We met the lady my mom had found to be Dak’s shadow for the wedding, and there was an instant connection. a Fellow Mom, with kids on the spectrum, this was definitely a blessing, and another worry off my mind.  She came to the rehearsal, and while the Bridal party ran through the ceremony, she helped Dak go through a trial run with His social story, and then helped keep Him , and the rest of the kids entertained at the rehearsal dinner, before taking Him back to my mom’s when it was time for His evening dose of meds.

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There simply are not words to describe the Peace, and relief that comes in knowing that Your children are loved, accepted, and safe. In knowing that you can occasionally catch a breath, and enjoy time with Your spouse without hearing “Mom!!!” or worrying about a Meltdown, or elopement, or any of the other challenges Autism brings.

In the midst of wedding planning, and preparations, there were Family Game nights, and plenty of memories made with Cousins. The Visit went by ALL too fast. The day of the wedding arrived, and My youngest and I headed to my sister’s house with the rest of the Bridesmaids and the other flower girl to get ready. My Husband and my Brother and Dad held down the fort at the farm, while getting ready themselves, until Donna arrived to take over with Dak. I am told He did really well, and when I saw Him at the ceremony, He was listening to Donna, and following His social Story. I am really proud of my kids, and got reminded that, while it may take more planning on my part, special events like a wedding CAN be enjoyed by the WHOLE Family. My Sister in Law even got some pretty amazing Photos of my kids while the Bridal Party was standing in the receiving line…..

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After the ceremony, Donna took My Oldest two on to the reception, while the Bridal Party did the Photo thing. My Brother’s new Mother in Law had outdone herself with activities for the kids at the reception, and they ALL had a BLAST! I was able to relax, dance with my husband, and enjoy the entire day knowing that the kids were taken care of, and we had back-up plans firmly in place if needed, but am happy to say, they were not needed!

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All too soon, Our time was up, and we loaded back up in our truck to head south, to head home. We were all anxious to get back to our dogs, our house, our own beds, and yet, there was this feeling that the trip was too short, that we were leaving a safe zone, and heading back into chaos of getting ready for back to school, work, and every day life. This year got off to a very rocky start, and Our time in NY was a much needed breath of fresh air, and new life into our routine, our lives. Yes, Autism is a part of our lives, but this trip was a beautiful reminder that it is not the end of the world, of just how far we have come on this journey, and of the support that we do have, even if it is 20 hours away. This trip restored my hope, reminded me of what matters most, and pulled me farther out of the depression I have been battling. There is something about returning to the farm, to the country life I was so desperate to leave as a teen, that refreshes my spirit.

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I will leave You with a Final Thought… a segment of Lyrics to a song that has been stuck in my head for a while now….

“I laid in bed that night and thought about the day
And how my life is like a roller coaster ride
The ups and downs and crazy turns along the way
It’ll throw you off if you don’t hold on tight
You can’t really smile until you’ve shed some tears
I could die today or I might live on for years

I love this crazy, tragic,
Sometimes almost magic,
Awful, beautiful life”
~Darryl Worley: Awful, Beautiful Life~

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.

A Legacy of Love, a Lifetime of Prayer

*Note , This may seem scattered and random, and should have been posted in April. For reasons hinted at in “Regaining Strength” , i never finished it, but am posting it now, because…even in it’s raw, scattered form, needs to be said. and besides, since when is grief ever “neat and organized” anyway?*
There is a group of people in my life who never gave up on me…
even through my wild rebellious years as a teenager,
no matter how angry I got, or how far out of control I spun,
They never stopped loving me, never stopped praying for me….
This is for them….
My Grandparents,
My Godparents,
my Mom and Dad ,
my siblings
The entire Jones/ Handy Family ( in my heart my 2nd Family).
I know that without all the love and non stop prayers,
my life would be totally different than what it is today,
and I thank God daily for blessing me with so many people who made sure I had firmly grounded roots,
but still gave me wings so I could soar….
The adults gave me roots and wings…
The kids filled my childhood with Friendship,
LOTS of memories,
They say there are people who leave footprints on your heart…
These are people who have left more than footprints…
This IS my Family, and I am Forever Blessed and Thankful….
Thankful for the Love,
the Laughter,
The memories,
the Friendship,
the Prayers and so much more…

Ok, this is for all you people who avoid the Camera,or hide behind it instead of putting yourself IN photos….
myself included…
There are people who love You who will want Photos of you to look back on when You are gone.
Don’t make them wish they had more Photos to cherish.
Finding myself wishing i had more of two special people in my life, both of whom has already left this earth.
This Photo is the only one I have, that I KNOW of….
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My Goal from this point on is to put ME in more photos with my kids….with the people I love.
This week has been one of reflecting, remembering, rejoicing, and mourning.  On Thursday (April 11,2013), I wrote this on Facebook ” As The Lord prepares to call a Precious Very Special Lady home, My heart cries, and rejoices at the same time. You see this dear Lady is my Godmother, and played a HUGE Role in my life. Her Love and Prayers, even when I was being unlovable are part of why I am the woman I am today……I Can’t help wondering if she knows how deeply she impacted my life. I regret not telling her often enough…and though I can’t make it to NY, I want to say THANK YOU, I Love You, and will never forget you!”
April 13,2013: At approximately 12:30 this morning my Godmother, Janice Handy went home to be with the LORD. She was a wonderful, gracious lady and taught us all very well how to survive in the world, but mostly how to live a life of faith. She fought the good fight, she won the race. She sees Jesus face to face. She was one of the Most Influential women in my Life and I am Thankful and blessed that my Parents chose her and her husband as my Godparents.
She leaves behind 25 grandchildren and 48 great grandchildren, three who predeceased her. She leaves behind a legacy of faith.
My Godfather went to be with the Lord my Senior Year of High school. At approximately 12:30 this morning My Godmother Joined him. When I think about the legacy they left, the Impact they had on my life, I count myself Very Blessed.
To Quote My Friend, Their Granddaughter, Jennifer: “My grandfather once felt that he was going to leave nothing behind for his family when it was his time to pass away. In reading all the posts here today, it is obvious that money cannot buy what he & my grandmother left behind. In the 65 years since the day they married, they had 6 children, who in turn had 25, who in turn have had 48. 3 of these met Jesus before they did. Most of these know Jesus as their Savior. Keith & Janice Handy were successful in passing on their faith and their love of family. What could be better than a legacy like this? I should be so blessed to do the same. “
They Truly Built a Household of Faith.