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…..

 

Better than I ever could have dreamed…

When I found out that I was having a little girl, I had visions of Ballet recitals, toe shoes, pink tutu’s, You get the idea. What I got is entirely different, but I would not change either of them for the world.

What I got was one Basketball playing, Book reading, Martial Arts loving artist, and one softball player, well they both play softball, but my Youngest, she LOVES it!. Both love their blue jeans. Both are proud to tell any who will listen that they love Superheros, Lord of the Rings, one loves Star Wars, one loves Star Trek, one is a whovian, both love Harry Potter, and there is so much more. They compare belches like the best of the boys, and sometimes to listen to their conversations about “Natural bodily functions” One would swear they were listening to a couple of boys.

So here we are, we traded Toe shoes for softball cleats….

Tutu’s for slide pants…

and Basketball Jerseys….

and Ballet recitals for Ball games….

and I am loving every single moment!!!

We still wear hair-bows….

We traded Classical Music for Softball chants and cheers…

Leader: We don’t wear no mini skirts
Team (echoes): We don’t wear no mini skirts
Leader: We just wear our softball shirts
Team (echoes): We just wear our softball shirts
Leader: We don’t play with Barbie dolls
Team (echoes): We don’t play with Barbie dolls
Leader: We just play with bats and balls
Team (echoes): We just play with bats and balls
Leader: Sound off
Team: 1, 2
Leader: Sound off
Team: 3, 4
Leader: Sound off
Team: 1, 2 Together: 3, 4!

instead of Pirouettes, we do Lay ups….

and Makeup? who needs makeup when you have eye black….

and the best cure when getting Hit by a softball? Rub some infield dirt on it….

I am so incredibly proud that my girls have embraced their uniqueness, and have found what they love. I am so thankful and Blessed that God has given me the privilege of being their mom.  I LOVE watching them in their elements, and am looking forward to another season of life at the Ballpark, the sights and sounds, the dirt, the sunflower seeds and pickle Pops, the crack of the bat, the friendships made, and the lessons they learn that continue off the field….

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.

The Garden of my Heart

This is How my day began….

 This was My Status on Facebook this morning:  “struggling to quiet the negative committee in my head today…feeling like I am gonna snap and say something I will regret if somebody pushes the “do not push button”…..

From the time I woke up this morning, the Negative committee in my head has been shouting. Reminders of past hurts, Negative things people have said about me, doubts about my parenting, doubts doubts doubts. The kids woke up fighting with each other, and the downward spiral continued. It was like a Big Ominous Dark cloud was hovering over our house. As I sat working through the war waging in my head, combating each negative thought as it surfaced, I found myself standing at a Crossroads….

This was the resulting Facebook Status: “Is it better to lock one’s heart away, to protect it from pain, perhaps to “shut down” or like in Once upon a time, rip one’s heart out to avoid heartache…or to love to the fullest, to experience life with all it’s joys and heartbreaks, to accept the pain and understand that when You let people in, they will at some point hurt you because nobody is perfect. The crossroad has been reached, the paths make no sense. Become a hermit and Hide from everyone?…no, that would surely be death , slow, painful, lonely death. Keep going on the path currently traveled, letting people in, giving and looking for good in all? Not sure that is right either. Too much pain, seems naive. That leaves the 3rd path; Guarded, careful steps. Accepting the pain, forgiving and learning to not be too trusting, without growing bitter and cold. Praying through a Mountain of negative thoughts today….”

Life has thrown many curve balls my way, and more than a few land mines. Things meant to tear down, to break a person, to destroy. There are many reasons I should not be sitting here typing this. The list of reasons why I should be bitter and angry is long. The argument for hiding away from the world is a strong one. Locking my heart away forever, shutting out all but a VERY limited few certainly LOOKS like the best path. That being said, I have learned enough about myself through the course of this journey called life to know that to lock my heart away is not the answer. It would enable bitterness to take root. It would slowly kill the creativity and compassion that I have grown to realize I need.  It is also becoming clear that the current path is not working, in fact it has become dangerous. I have realized I have been too trusting, that looking for the good all the time is  Naive, and there are people who will take advantage, who will use and abuse such trust and kindness. The 3rd path seems to be my best option. It is FAR from the easiest, and in fact it is probably the hardest. It means accepting the pain, and working through it. It means forgiving, and refusing to let the poison of bitterness take root. It means continuing to be a part of the world, to keep giving, to continue to feed the compassion and creativity that I thrive on, while guarding my heart and making sure that I don’t allow myself to be used.

As I continued to work through the jungle of thoughts in my head, The positive thoughts began to regain control of my mind. As I prayed , my focus changed. I began to remember who I am, that I am important, that I am not worthless. I was reminded that I am here for a purpose, and locking myself away will not accomplish that purpose.  I was reminded of the Parable of the bags of Gold.

Matthew 25:14-30 (NIV)

The Parable of the Bags of Gold

 “Again, it will be like a man going on a journey, who called his servants and entrusted his wealth to them.  To one he gave five bags of gold, to another two bags, and to another one bag,each according to his ability. Then he went on his journey.  The man who had received five bags of gold went at once and put his money to work and gained five bags more.  So also, the one with two bags of gold gained two more.  But the man who had received one bag went off, dug a hole in the ground and hid his master’s money. “After a long time the master of those servants returned and settled accounts with them. The man who had received five bags of gold brought the other five. ‘Master,’ he said, ‘you entrusted me with five bags of gold. See, I have gained five more.’ “His master replied, ‘Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master’s happiness!’ “The man with two bags of gold also came. ‘Master,’ he said, ‘you entrusted me with two bags of gold; see, I have gained two more.’ “His master replied, ‘Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master’s happiness!’ “Then the man who had received one bag of gold came. ‘Master,’ he said, ‘I knew that you are a hard man, harvesting where you have not sown and gathering where you have not scattered seed. So I was afraid and went out and hid your gold in the ground. See, here is what belongs to you.’“His master replied, ‘You wicked, lazy servant! So you knew that I harvest where I have not sown and gather where I have not scattered seed?  Well then, you should have put my money on deposit with the bankers, so that when I returned I would have received it back with interest. “‘So take the bag of gold from him and give it to the one who has ten bags.  For whoever has will be given more, and they will have an abundance. Whoever does not have, even what they have will be taken from them.  And throw that worthless servant outside, into the darkness, where there will be weeping and gnashing of teeth.

To lock myself away, to Not use the Talents I have been blessed with, would be the worst thing I could do. I have been blessed so that I can bless others.  The trials I have overcome have enabled me to be there for people facing similar battles. And so, I will continue to capture life’s beauty one Photo at a time, and I will continue to share my thoughts, to write when I can.

This was the Facebook status that came from the shift in perspective:

“It’s not you who creates insecurities in your mind; it’s others who plant that seed. It’s you who waters that seed and allows it to grow.”

It’s about Perspective….will we feed the negative thoughts an allow them to take root and grow? or do we combat them with Positive truths. what we choose to give power to is what will grow and thrive.

{Philippians 4:4-8 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.}

It all comes down to a Choice….Every day, sometimes more than once a day. Will I focus on the negatives, on the hurts, the fears, the doubts? or will I choose to hold on to the positives, to focus on the blessings in my life. If You give something root, it will eventually begin to grow. What will You grow in the garden of Your heart and mind? I choose to weed out the bitterness, resentment, fear, doubt, hate, anger, rejection, jealousy, and make room for love, compassion, peace, hope, faith, joy, trust to grown. Some days , like today, are harder than others. This is after all, a fight.  I am reminded of a couple of quotes…, one I have said a lot recently, to a dear friend…and one apparently I need reminding of tonight….

“Promise me you’ll always remember:

You’re braver than you believe,

and stronger than you seem,

and smarter than you think.”

― A.A. Milne

“I’m quirky, silly, blunt, and broken. My days are sometimes too dark, and my nights are sometimes too long.

I often trip over my own insecurities. I require attention, long for passion, and wish to be desired.

I use music to speak when words fail me, even though words are as important to me as the air I breathe.

I love hard and with all that I have… and even with my faults, I am worth loving.”
– Danu Grayson

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….

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….

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….

Molly checks the mail….

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

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!

and, one more….

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.

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.

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.

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.

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…..

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!

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.

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.

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.

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.

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.

and all 6 Grandchildren together…

Watching My Parents Dance….

Seeing the Love of my Life in His Uniform….

Watching My Dad dance with His 3 youngest Granddaughters….

Dancing with My Daddy….

Watching Dak on the Dancefloor….

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.

Vacation Poem

We Just returned from a Trip to Visit my Family in Upstate NY. I wrote this poem while on the road…It is a whole lot silly, makes very little sense…lack of sleep and coffee probably had some play…Here it is none the less…

 

Clothes are Loaded
truck is Packed
Turn off the lights
Don’t forget to pee!

Kids Crammed in truck
off we go to Grandma’s House
She Touched me!
Are We There yet?
On and On it Goes

20 Hours on the road
3 kids and 2 adults
in our pick-up truck
He took my Pillow!
Mommy I need to pee!

Up and down through mountains
over rivers we go
Headed North to Grandma’s house

Stop for gas
stop for food
everybody go pee!
Now pile back in the truck

Don’t lean on me!
Mooom! She’s squishing me!
The word of the day is Co-exist!

Ten hours down
Ten more to go
Daddy Drives
Mommy Referees

Alabama, Tennessee
Virginia, Pennsylvania
North to Grandma’s house
in New York we Drive

The sun is setting
go to sleep
Mom! I Can’t feel my feet!
Sit Still, Stay in Your seat!

Endless Highway
Rolling Hills
Dad, what state
is that Liscence plate?

Reading books
Playing Games
Hey Look!
I see a Train!

20 hours on the road
North to Grandma’s
Are we there yet?
On and On it goes.

~July 17,2013~

Rachel E. Brown

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.