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”.”

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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…..

 

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Let’s give this another try….

I realize I have not written in a while, 2 years to be exact. that’s not to say I have not been writing, but more that Life has gotten a bit chaotic and messy, as it has a tendency to do. In the 2 years since I posted last, I started on a journey of health issues and a search for answers, my oldest child graduated from High school and started college, my Grandmother; my biggest prayer Warrior and inspiration passed away, and lots of other crazy stuff some of which I am still processing.

In the midst of the madness, the chaos, the upheaval , the rollercoaster has continued, memories, good and bad have been made. I focused a lot on my poetry, and posted several to my facebook page just for it.  I have come to realize I miss writing, and that I need to get back to it. I am returning to a place of doing what I need for ME to keep my sense of who I am in the midst of the madness that is life. I am reminded that when I write, I discover things about myself, about my faith, my creativity, and the world around me.

So, that’s that, and I will be back shortly as I have a post brewing in my head, but wanted to get this out of the way first.

My BellaBug, her dolls, and a DIY day with Mom

My Youngest is as obsessed with American Girl dolls as Her big brother has ever been with any of his obsessions.  She has a growing collection of dolls that have been given to her from some very special people in her life…..This is her “doll family”. Not all of them are American Girl, but she loves them all very much….

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Here she is with Josefina, Isabella, Mary Grace, Molly, Wolfina and Hero bear….These are the ones that take turns going places with her, that are the closest to her heart because of the love that went into how she received each one….

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She is always asking for more furniture and accessories, and let’s face it, the stuff is not cheap. SO I headed to Pinterest and started gathering ideas for stuff we could make ourselves. I figured it would save money, and give me and her a way to spend some quality time together.  Today started like every Saturday, with her wishing she had somebody to play dolls with, so after breakfast we headed to Hobby Lobby armed with a supply list for  3 simple projects I had found on Pinterest…a suitcase, a mailbox, and a desk/chair set.

I didn’t take any photos of the actual crafting process ( yeah yeah I know) because I was having too much fun with my BellaBug, and by he time we were through, my hands were covered in hot pink spray paint, glue, and glitter. All in all it was a Great day, and mission accomplished. My Girl now has some new things for her dolls, and we had a great “Mommy daughter day”, something that was VERY much needed. Between Daddy being in the Military, and being the youngest of 3, and both older siblings being on the spectrum, I often worry that she feels I don’t devote enough time to just her. Today was packed full of memory making, smiles, and quality time with my BellaBug, and I am sure that those memories will long outlast any of the doll items we made today….

Molly with the finished suitcase made from a Plastic Pencil Box….

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Molly checks the mail….

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Mission accomplished…BellaBug and Molly with everything but the desk, which is not finished yet…

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Thank You Pinterest for inspiration that I will actually use, mixed in with all those wonderful ideas I will most likely never attempt! LOL

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

Just a Thought

So, i have been watching the series of Dr. Who episodes with Donna as The Doctor’s companion…I will admit, of all the companions, she has never really been my favorite, BUT i noticed something this time around that kinda stuck with me…..in “Turn left” about what the world would be like if Donna never met the Doctor, she keeps saying how unimportant she is, and how she is just a Temp, and through the course of the episode, and the 2 that follow, we find out just how important Donna is. It just kinda struck me that we may not realize our importance, but to others around us, Our very existence could be world changing…ok maybe not on a Donna Noble saves the universe kinda scale, but it kinda stuck with me because i have many days where I sound like Donna ” Oh I am nothing special” ” I am just a Temp ( well for me it would read mom, housewife)”….just a tidbit from my geeky corner of the world

 

I Just posted the above as my Status on Facebook, and then as my news-feed loaded, THIS appeared…

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I am reminded that it may seem mundane, and everyday, and unimportant to me…but everything i do…from washing their laundry, to finding that lost toy at bedtime…is important to my children, even if i can’t always see it….even if i often feel invisible, like i am “Nothing special”

Maybe just maybe, it really does matter after all

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~

Regaining strength

I have not written in FAR too long. My world seemed to be spiraling out of control, and feeling overwhelmed i lost sight of any positive, of the inspiration and lessons i do my best to look for in the midst of life’s storms. I felt that if i had nothing positive to say, then why write? I am not ready to go into all the details , but the long and the short of it is i was sinking…deeper and deeper into depression. I put my writing on the shelf, and set my camera beside it. Sure, i continued to take photos of the kids sporting events, of the obvious highlight moments, but i lost sight of the every day joys.

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Things really came to a head this past 6 months. Depression took a physical toll, and in May i had surgery. The Physical limitations only increased my depression, yeah i know, vicious cycle. Thing is, as a stay at home mom, its MY job to take care of the kids, and the house, and the grocery shopping, and….you get the idea. well all of the sudden I couldn’t do any of that, and i felt i was failing my kids, my husband, myself.

I am in the process of climbing out of a deep hole, of mending things that have been damaged, and of moving forward. The storm clouds are breaking, and the sun it beginning to shine again.  I am dusting off my virtual pen, and have picked my camera back up off the shelf….

Spiraling downward,retreating inward

hitting bottom,something snaps

a wake up call to stand and fight

a forgotten corner of her mind

a well of strength within she finds

shakily rising, tears falling

cleansing tears of a heart on overload

washing over her like a flood

shoulders back, feet planted firmly

her faith was shaken, her foundation rattled

and yet she stands

another battle wages between heart and mind

This too shall pass

as the storm clouds clear

she stands, scarred but stronger

the rose once again rising from the ashes

~~R.E.B , July 7,2013~~

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