My husband and I have 7 children (His, Hers and Ours). 2 of our precious little ones have Autism...and a 3rd (the baby) is still undergoing testing. I think a lot about what I'd like to share with people, especially if I can shed light for families who are new to the autism world. And for you naysayers, YES, it is another world! A foreign world, where things of your former world no longer work, or make sense. The air, food, space, touch, site, smell, sound, desire, hope, friendship, mobility ALL becomes different. It's as if you were reaching your foot out to step on the ground and instead of finding a solid surface your foot bounced off and threw your body like a trampoline. All the while, people around you are saying, "just step on it, why are you bouncing, it's easy, you aren't trying hard enough, here fill out some paperwork so you can get an instructor on how to step on the ground??!!" It's humiliating and insulting to a certain degree, to be sure. You are supposed to know these things! They are YOUR children! So what if they speak a different language and bounce off the ground...you still need to find a way to stabilize their life, your life and live in a world of "normal" people.
The ugly truth is, not all people can handle your new reality. I have been completely dumped by friends, just dismissed and ignored. I blame their ignorance and try my best to just forgive and move on but it is very difficult when you can't even address the underlying issue with them. It's like you become a social pariah. If they don't know "what" to say, they just disappear so they don't have to say what is on their mind. It's hurtful and unkind. I'd rather be told what people think of my situation, no matter how hard it is to hear. But then again, I have learned a compassion about others that I didn't know before Autism. A kind of "reading between the lines", that helps me filter my words to whom I'm speaking so I don't do to others, what I so often have done to me. Now look at who I've become, a overly sensitive, critical and closed off person?? Not really...but sometimes...yes, that describes me. I don't blame my children. I don't really blame autism. I just know I've changed because of it...because of the "A" word. But not all changes are bad. Not all changes make us worse. I think a lot of the changes have affected our perspective...our values...and how we rely on God.
People say...You should write a book! People say...You should tell your story!! People say...You should help other families that are hurting because of the "A" word!!! Can I ask one thing about that? How on earth can I help others when I myself need help?
I remember a time when I could sit down and write, cook a meal, vacuum, grocery shop, use the bathroom, call a friend. I can still do those things occasionally, but I almost always pay a price. I have had to weigh out small tasks to determine if it's worth the risk of turning my back or placing my children in another room. Our 2 autistic children fight ferociously, they climb everything and jump off of high places and they don't have empathy. I have made the mistake of doing an everyday thing (like watching a TV program for 30 minutes) and even still, took at break after maybe 8 minutes and have walked into a room covered in feces...and babies faces and hands covered in it as well. Was that worth the 8 minutes of starting a program, that I can no longer finish but now have to bathe 3 children (in a plastic tub insert in our shower nonetheless), and now have to scrub and sanitize the room, open windows and spray so hopefully the house won't reek of poop all night!!!
I love to write. I love to read. Now I don't only not have time...but I never get enough undivided time where I can actually concentrate and accomplish something. Therefore I blog...and in venting and blogging I discover that indeed I can help others by merely sharing.
I now wear a key around my neck. I am known as "The Keeper of the Key's" or "Hagrid" (Harry Potter reference :), and it's because we discovered that our children were figuring out how to unlock the front door. Only solution to that is locking the house from the inside. I also lock doors in the hall and have keys for those as well. And hey, in case you were wondering, that goes against my every instinct! I don't like it. I want my kids to explore and feel open and welcome in THEIR home for goodness sake! It's a terrible conundrum I find myself in. I'm the mom who wants to be home with her kids! One who wants to play dress up and make mud pies and study bugs! I want to plant a garden with my little ones and watch it grow. I don't want an outside job so we can have fancy cars and an expensive house in the rich part of town. Yet, I am here...swimming upstream and doing what I can with my kids in a less than suitable home...and still not able to do the things a stay-at-home mom dreams of doing.
I was telling a friend yesterday that if I let down all my gates and unlocked all the doors to see what my kids would do...they would:
Run the perimeter of the house endlessly screaming, laughing, pushing and talking gibberish.
They would open every cupboard, drawer, door and pantry...all while emptying all the contents. They would climb every shelf, counter, table, chair and bed.
They would jump from one piece of furniture to another and they don't notice glass or breakable items.
They wouldn't stop if I told them to.
They wouldn't care if someone got hurt.
They wouldn't care if they themselves got hurt.
They would keep going.
And going...
I understand. Nobody should let the gates down with little ones running about, right?! Well, in our house...the gates don't stop them, they just slow them down. They can bust through anything.
Now, enough of the hardship talk. Enough of the whoa's!!! Let me tell you another side of this world.
Because of our families new challenge, we are forced to communicate about every detail of the day. What the kids ate and drank, how they managed the bus, what therapy times they had and any small achievements that may have happened. We talk about new ways to rearrange the furniture, how I can manage a trip to the store with certain kids and how another of them might be too hard on that day. My husband checks in regularly to see if there is anything going on that we need to talk about or pray about. Our schedule is strict. Our bed time is early. And our menu is simple. Because of this intense interaction, we ALL know...from the oldest to the youngest...where everyone is physically & emotionally at any point of the day. We don't require a lot of friend outings. They simply don't ask. I can skip some events that aren't crucial because our little guys don't know one way or the other...so there are no fights.
Our kids are still very young in their minds so there is a sweetness about them that most mommy's love to hold onto while their children are growing up and they want wish they would stay small. That is a tender blessing.
Our special kids provide a sense of stability to our home. It's strange but they really do. We don't have to guess at decisions, we KNOW what we can and can't do. It wasn't that way at first, it is something you learn as you are presented with issues that you never had to face with your older neurotypical children. When we are in the moment we feel trapped but in a weird and almost magical way, we are free. Basic smiles and hand movements that others don't notice become a proclamation to my husband in the other room, "HONEY!!! DID YOU HEAR THAT!!!" "PRAISE GOD!!", I hear him reply...and all that because Kaelynn said in a slow methodical voice, "Mama. I want cookie.Yes?'
Did you hear that? A sentence? Our 3 1/2 year old is making sentences!!!
And we carry on...
And we lift our requests to Jesus...
And we take pictures as we go along...
And the journey that takes place is like no other, it sings a song all it's own. A song that angels sing.
A woman's unspoken world emerges when glitter and wishes converge in her dreams. Never let on that the glitter is there...but keep on wishing.
Tuesday, October 1, 2013
Wednesday, June 19, 2013
Summer 2012 - Sounds a lot like Summer 2013
An old post that actual made me laugh...some things never change!! LOL
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When I drive home after appointments with the kids, I listen to music to soothe the pain. I am not happy with seeing psychologists and having to answer "no" to questions about my children that I KNOW I should be saying yes to. I am sick of the paperwork and red-tape involved in regional centers, school districts, medical grievance departments and therapy agencies. I don't get heard when I talk to my children...and they certainly don't answer back. My agonies could go on and on and I try and "hold my chin up" as many of my friends and family have encouraged me to do. My question is, how do you do that when you keep getting "kicked in the chin"!?
Last month was supposed to be the season of all seasons. Our 3 kids that live in Maryland would be visiting and Kyle would be getting time off that #1 he needed very badly but also...#2 he had to save all year so there was never another break along the way. In the short time the kids were here: the vacuum cleaner broke, the new trundle we bought for the toddlers broke, our garbage disposal broke, all 3 babies got hand foot and mouth disease, Kyle's grandmother passed away, my mother started her chemo treatments for colon cancer and our daughter Kaelynn was diagnosed with Autism. This WASNT going to be the season we were longing for. It WASNT our turn to get a break or to have a time of rest. We are a one income family, we don't get vacations, we don't own a house or enough cars. When we planned for the kids to come, we prayed that those things would change so we would have enough room for everyone, to maybe ease some of the stress. That didn't happen. Instead, it was harder. We joke that when our ship does come in...it will be the Titanic.
I am tired of dragging out of bed to put out fires first thing in the morning. Changing up to 18 diapers a day. My children are in therapy each day with various people coming and going and almost always leaving a mess behind or setting my children free when I'm not ready, only so I can chase them through the kitchen and out the back door. Today, Kaelynn was upset and pulled every stitch of clothing out of her and Aidans dresser. Kylie is teething so she cries all day. Aidan has been constipated and when it ends he poops about 6x that day...resulting in a severe rash and sore bottom. Aidan and Kaelynn whine or scream to communicate and then hit me or throw things at me if I don't reply. Kaelynn throws everything off any surface, strips her bed, clothes and won't let me brush her teeth or hair. I hear some of you saying, "that sounds like any 2 year old"! Can I just say...it's NOT THE SAME! Discipline doesn't work. They have no empathy and high pain thresholds. They don't understand what social graces are. They don't feel sad when I'm angry with them. They are like strong-willed children on crack that don't care about danger. Can they be good? Yes, of course they have their moments. It's the day in and day out that just kills my skills...my mother skills, wife skills, cooking skills, cleaning skills...you get it.
Today, I'm twitching....
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When I drive home after appointments with the kids, I listen to music to soothe the pain. I am not happy with seeing psychologists and having to answer "no" to questions about my children that I KNOW I should be saying yes to. I am sick of the paperwork and red-tape involved in regional centers, school districts, medical grievance departments and therapy agencies. I don't get heard when I talk to my children...and they certainly don't answer back. My agonies could go on and on and I try and "hold my chin up" as many of my friends and family have encouraged me to do. My question is, how do you do that when you keep getting "kicked in the chin"!?
Last month was supposed to be the season of all seasons. Our 3 kids that live in Maryland would be visiting and Kyle would be getting time off that #1 he needed very badly but also...#2 he had to save all year so there was never another break along the way. In the short time the kids were here: the vacuum cleaner broke, the new trundle we bought for the toddlers broke, our garbage disposal broke, all 3 babies got hand foot and mouth disease, Kyle's grandmother passed away, my mother started her chemo treatments for colon cancer and our daughter Kaelynn was diagnosed with Autism. This WASNT going to be the season we were longing for. It WASNT our turn to get a break or to have a time of rest. We are a one income family, we don't get vacations, we don't own a house or enough cars. When we planned for the kids to come, we prayed that those things would change so we would have enough room for everyone, to maybe ease some of the stress. That didn't happen. Instead, it was harder. We joke that when our ship does come in...it will be the Titanic.
I am tired of dragging out of bed to put out fires first thing in the morning. Changing up to 18 diapers a day. My children are in therapy each day with various people coming and going and almost always leaving a mess behind or setting my children free when I'm not ready, only so I can chase them through the kitchen and out the back door. Today, Kaelynn was upset and pulled every stitch of clothing out of her and Aidans dresser. Kylie is teething so she cries all day. Aidan has been constipated and when it ends he poops about 6x that day...resulting in a severe rash and sore bottom. Aidan and Kaelynn whine or scream to communicate and then hit me or throw things at me if I don't reply. Kaelynn throws everything off any surface, strips her bed, clothes and won't let me brush her teeth or hair. I hear some of you saying, "that sounds like any 2 year old"! Can I just say...it's NOT THE SAME! Discipline doesn't work. They have no empathy and high pain thresholds. They don't understand what social graces are. They don't feel sad when I'm angry with them. They are like strong-willed children on crack that don't care about danger. Can they be good? Yes, of course they have their moments. It's the day in and day out that just kills my skills...my mother skills, wife skills, cooking skills, cleaning skills...you get it.
Today, I'm twitching....
Tuesday, June 18, 2013
Engloria (The short version of a Scottish childrens book) - by Chella Rivers
Hello readers,
This is a short version of a Scottish adventure chapter book I've been working on for a few years. I tried to publish the "long" version and then shortened it for a competition in a magazine. I thought it would be fun to post the short version as a blog since it's not terribly long to read. If I get a good response, I will post the long version, chapter by chapter. I hope you enjoy it.
Engloria
by Chella Rivers
This is a short version of a Scottish adventure chapter book I've been working on for a few years. I tried to publish the "long" version and then shortened it for a competition in a magazine. I thought it would be fun to post the short version as a blog since it's not terribly long to read. If I get a good response, I will post the long version, chapter by chapter. I hope you enjoy it.
Engloria
by Chella Rivers
Nicola lived in a cold,
smoky cottage near the gate of Sorn Castle.
The fog was always thickest there and seemed to purposely hide the
villagers’ view of the castle courtyard.
Her stonewalled cottage made the bitter chill of winter a painful
enemy. The floors stuck to her cold,
bare feet early in the morning when she stepped out of bed, which was only made
of straw covered with dirty sheets with holes.
Having food in the cupboard was rare and there was barely enough coal to
build a fire. The butt and ben had one
big room that consisted of the living room, a wash area for cooking, a water
closet and a curtained area for Nicola’s bed.
With auburn curls, bright green eyes and fair skin,
Nicola was a perfect picture of Scottish blood. She had one living relative,
Duncan McIntosh, and even though he provided for her, he was evil to the
core. Duncan was the grounds keeper for
Sorn Castle, yet he forced Nicola to maintain most of the chores. The loft was where dreadful Duncan slept off
his whiskey and of course Nicola was subjected to the stench of his filthiness
each time she had to clean up after him.
Late one spring evening, after Duncan had fallen into
a drunken stupor, Nicola decided to spend some time at the River Ayr. At the river there was a stone crossing that was
supposedly bewitched. The legend was told that if
you go under the bridge, you will end up in a land called Engloria and you may
never return. Even so, she continued to
walk toward the legendary stone bridge.
The sky above her was covered in its common grey canopy yet was clothed
in lush green landscape. The water
passed by her as she walked and it didn't look back at her. Everything around her stood still, and the
grass lay flat across the hillside as if it were waiting for the arrival of
someone very important. The canopy above
her appeared to get closer and darker and the air seemed to be getting thicker
the closer she got to the stone archway.
Her vision blurred as she tried to focus on the mystifying bridge
ahead. All the thoughts that went
through her head felt useless and the eerie feeling that took over the glen
suddenly gripped her with terror. There
were sounds in her head that she knew for certain weren’t echoing in her
ears. Black thoughts consumed her
emotions and if it continued much longer she would surely go mad. The fear of it all made her take off into a
full sprint back to where her home was in Sorn.
She jumped over rocks and puddles, dodged thistle bushes and leapt over
fallen fir trees. Nothing could make her
feet move fast enough. She could feel
the baby hair on her neck stand up as she darted in and out of gullies and
divots in the road. She could feel the
force of something evil tugging at her clothing and hair. Underneath the ground was a lurking darkness
that didn’t want Nicola claiming the joy that was just beyond the bridge. Somehow, it knew Nicola and sensed her
abilities. Nicola couldn’t have known
the seriousness of her travels. She felt
as if the ground had started to swallow her feet as she pulled her legs like
taffy from the dirt road. As the forest
passed by her in a swift blurry mess, she could hear the whistle of the air as
it stung her ears. She made an attempt to
go under the bridge and was too scared now to
continue so she returned home flustered and scared. By then,
the fog had swept in quickly from the coast and swallowed the night. As she continued, she looked in the distance
to see the outline of her cottage and feared that Duncan was awake. Being as quiet as possible, she crept through
the dense fir trees near her bedroom window. She took a deep breath and held it in while
she pushed it open. She could feel her
heart beat in her chest. One leg at a
time, she managed to get back in her room without making a sound. Still afraid to breathe, she slipped off her
shoes and scrambled in bed fully clothed.
The lamp from the front room glowed under her
door. She could smell the tobacco
burning in Duncan's pipe. He was up, but
most likely heaped over his whiskey and not aware that she was even gone, which
was just as well. He was a tall thick
brute with a scraggly red beard and moustache.
His nose and cheeks were puffy and splotched with redness since he drank
heavily and carried his anger around with him wherever he went. After a wee bit she undressed and put on her
nightgown and opened her bedroom door to glance out to see Duncan. With one eye peeking through the cracked
door, she looked side to side and suddenly her stare was met with a pair of
bloodshot eyes.
"Where have you
been all night?" he bellowed as he pulled the door open forcefully and
dragged her into the room and on to the floor.
"I haven't had my
supper you worthless little rat! How
many times have I told you that you aren't allowed to leave this house until I
have had my supper?"
As Duncan screamed, a
boiling pot flew across the room aimed directly at her head and she ducked out
of its path. Inside she wanted to scream,
but she sat silently and gazed at the ground as his rampage continued. Lucky for her, he was also drunk and was in
and out of consciousness and he began to wobble back and forth on his
feet. Her ears became numb during his
ranting and her eyes became heavy. Her
mind wandered off to the day's events.
She still wasn't sure what spooked her at the burn. She wondered if it was her imagination. Either way, she needed to try again but this
time she wouldn’t go alone. The one
person that came to mind was Liam McPherson, a lad she had known her whole life
but also kept at a distance. She was
afraid to get close to anyone but maybe he could help her face the bridge. In fact, as she lay there, she recalled that
he told her that he had been to Engloria, yet she never believed him. Tomorrow she would find out if it were true.
Finally Duncan fell back in his chair and passed
out. She got up off the floor, climbed
into bed and closed her eyes. Nicola
knew that tomorrow would be here soon and she needed to rest for another day at
the burn.
The next morning, after
eating a stale bit of toast she found hidden in the storeroom, she dressed herself with
whatever was clean in her bureau. Then
she brushed her tangled hair, wrapped a hair-bob around her locks and left the
cottage. She quickly made her way
through the busy town to find Liam. Maybe
with him as her escort, she could brave the bridge once again. As she came to the edge of a grassy knoll,
she could see Mr. McCombs’s horse and cart in front of the church. Taking a better look, she noticed that there
was a lad seated in the back. She
couldn’t mistake that it was indeed Liam.
His hair and face were messy and unkempt and he wore a red and black
kilt with tall black boots that laced and buckled all the way up his
calves. Across his chest was a sash, the
same print as the kilt and underneath that she could see a long-sleeved white
tunic. On his left shoulder, he wore a
pin that had something written across it and a picture that she couldn't quite
make out.
“Good day sir,” Nicola said
as she curtsied, “Would you like to join me on a grand adventure today? I understand you are familiar with Engloria?”
she added.
Excited at the prospect,
Liam exclaimed with a bow, “Of course, my dear lady! I would be honored.” Nicola let her fantasy
and imagination take over and they set off, giggling as they walked. They paced
themselves shoulder-to-shoulder as they approached the auld brig. Nicola was curious why the evil presence that
followed her the previous day was no longer there, and she wondered if having
Liam with her was possibly the answer. It
was lovely to have him there and it was even better that she wasn’t
frightened. The morning sun reflected
off the water on the other side of the bridge and it sparkled like a sea of
jewels in liquid gold. Their feet sunk
into the ice-cold water and they struggled to balance on the rocky bottom. Each step resulted in sliding and grasping onto
something sturdy. Every time Nicola’s
feet submerged she could feel the water swish between her toes and it made a
gooey feeling run all over her body. The
wet marshy water really was quite gross.
As they reached the last few feet of the covering, Nicola could see a
new world unfolding in front of her. To
her amazement, the landscape looked just like Sorn although there were no
houses or people. The Munroe rose up to
the top of the world and the peaks were covered in fluffy white snow. The meadow they stood in was covered in blue
bells and thick, white flowers called snowdrops that resembled tiny tear
drops. On the outside edge of the
eastern glen there were groves of tall, white fir trees standing neck to
neck. The grass was cheerfully calming
and each time the wind blew the teardrops burst into song. The peaceful scenery seemed to be composed by
a master artist and Nicola knew that there was something special about this
place. Liam pointed out various areas of
land and explained the names of the territories.
"Right there, where the
mountains start to climb is the Lankin Forest, where days and nights slow down
and small mysteries take flight. And to
the right, just south of the burn is, Glen Lomond. To the North is the White Forest and the base
of Whisper Falls,” Liam proclaimed whimsically, while he starred off into the
distance.
Unbeknownst to them, when
they entered Engloria, they cracked the seal and now the darkness and its
leader were already transcending into the meadow that led into the Lankin Forest. Slowly, dark clouds formed above the forest
as the wind picked up speed. They
fearfully watched as the darkness started to close in on them suddenly. Clouds hovered overhead and the air grew
thick and so cold that the puddles that had formed that day became tiny ice
rinks and droplets of water froze in mid air. The White Forest stood still as
the black engulfed the trees and attempted to strangle the leaves of the
branches. Black and grey images, like
wolves that could fly, jumped from tree limb to tree limb, taking out every
thing in their path.
Liam grabbed Nicolas and
hand and said, “Quick, I know a place where we can take cover as the storm
passes by!”
They ran as fast as possible
toward a large rock formation. They felt
cold against their backs and when Nicola glanced over her shoulder she became
very frightened by the storm as it appeared to be chasing them. Hand-in-hand
they went into the cracked mountainside.
The black cloud that followed them had frozen everything in its path,
including the bridge and the Lankin Forest.
They were now engulfed in a marble and stone walkway that towered over
the great valley. The clouds had darkened the path, which offered no comfort,
and in the distance they could hear loud shrieks of a howling animal that
seemed to be in a battle. The sides of
the crevice were vast and the sky was filled with black smoke. However, when they had gone through the
passageway and approached the top of the brae they peered over the glen below
to a brilliant scene. The ghostly clouds
hadn’t made it to this side of Engloria.
The peace was astounding as eagles soared across the heavens
gracefully. Nicola could see a family of
ducks playing in a nearby puddle, and they watched her closely in case they
needed to escape. She wondered why they
weren't in the giant magnificent lake just steps away from them. Nicola got chills all over her and tiny goose
bumps on her arms rose up making her cold suddenly.
Liam and Nicola looked down
into the glen near a grove of trees and then they heard what sounded like a
rush of wind and water coming from somewhere in the meadow below. Clouds were combining together to form some
sort of an object that Nicola had a hard time distinguishing. In between the clouds were speckles of
shimmery water that were transparent and suspended in the sky. The water droplets started to line up in the
form of something. They slowly came
closer together in such a way it seemed they could communicate. As she focused and the formation started to
become clearer she could see that the water droplets had created an enormous
hand in the sky. Nicola was startled and
started to run for shelter as she watched the water spectacle. The last three fingers on the hand were now
tucked into the palm, as was the thumb, which left the index finger pointing
outward. As Nicola hid under a willow tree, she watched in amazement as the
extended finger, which she could barely see amidst the backdrop of the same
color sky, showered a spout of clear, fresh
water onto the valley below. It moved
with precision and functioned as a regular water spigot. It was terrifying yet astonishing all at the
same time. The hand had no body attached
to it as it drifted from shrub to tree and from grassy field to rose bush. It was obviously watering the meadow.
Liam and Nicola stood and
faced the valley. She reached for his
hand as they each took a deep breath of excitement and they walked deeper into
the world of Engloria.
Legends are mysteries that
are passed down from generation to generation.
The people in the legends are those that carry details of the
truth. They are ingrained in the minds
of those who live the story and then live to tell it to others. Nobody who walks the earth wants to become
part of a legend, for then they will step into the unknown depths of a strange
and eerie existence. And yet here they
were, in a world that would turn her belief system upside down. This was the moment they were born for and
they somehow knew this adventure would lead them to the greatest fulfillment in
the history of Engloria.
Friday, June 7, 2013
Why I'm able to Mother with love instead of merely surviving my Autistic children!
Do you ever wonder about your neighbor and their rowdy children? Or look crooked at a family eating at the table next you and wonder why they can't control their child? Stop for a moment and think about the fact that you know nothing about that family unless you have spoken to them. Even then, they may not reveal the truth to a stranger or a person who doesn't need to know their business. When I'm in public and my child is climbing the walls, I don't make a proclamation of "my daughter is Autistic and that's why she's out of control", because honestly I don't need to make excuses (nor do I have the time), I just need to focus on teaching her the right way to behave and to ignore the negative behaviors that draw her too much attention. Does this sound foreign? It did to me also about 2 years ago when we were first learning this new technique of training our children how to interact in a social world when they have no social compass whatsoever.
My life doesn't revolve around Autism, or does it? I find my thoughts gravitate to what ASD is teaching me, or rather, what my children who suffer from ASD are teaching me. I have been compelled to look deeper inside myself than I ever thought I needed to. I've had to remove scales from my eyes about my own heart and how over the years I have naively judged other parents. I escape in my mind to places I've never traveled (for those who know me intimately, it's usually England :), in order to survive those days that make ZERO sense and when my calendar is so full I actually need to be in 3 places at once and they are all equally important. I find I am a person who needs peace and quiet to concentrate on important detailed matters and because I no longer have that quiet time, I'm learning how to create a situation that motivates me enough to finish tasks that ordinary leave me baffled.
I use the word baffled now. Amazing...haha.
When I was in middle school I loved Punk music and I wore ghastly black clothes with chains and spikes. Due to childhood trauma, I also had emotional baggage that today would cost thousands in airport fees! Life was dark, mysterious and hurtful and hence I became those things too. I still find myself wanting to wear heavy black eye-liner and converse! Its comical really when you see who I am now and how I go days on end wearing whatever fits (even my husbands clothes), one would think I have no style of my own or any sense of fashion. But, in the midst of this irony, I have found a profound sense of freedom, after all aren't punk rockers rebellious in nature? Aren't they trend setters and haters of the common fashion world?
Why is she talking about punk-rockers and Autism? Where is all this going?
I am the mother of 7 children. I gave birth to 4 of them and 3 of them were entrusted to me by God. I also have what I call spiritual "adopted" children that call me mom :) They all face challenges in different ways. They have hurts and questions like I did. That is why my life was hard growing up. I'm sorry if this sounds "cliché" but lets be real, I could never understand and have compassion on my future children if I had the perfect upbringing. "There is no "perfect" upbringing" you may say...and I hear ya...but, there are "white picket fence" lives out there. Parents who stay married. Good family and friends encouraging good character. Money doesn't buy happiness but it does provide more opportunities to thrive in sports, education, travel and experiences. Everyone has trouble, yes. But, not everyone has childhood trauma.
Recently, I have uncovered some truths about me that are bringing the last 40 years into perspective. Have you ever wondered why you have encountered various things in life and why others haven't? Why your parents divorced, why you were abused, why there was never security, why you rebelled and tried drugs or allowed people to take advantage of you? I usually don't think about it and maybe I should? I have just moseyed through life and took things as they came, one day at a time. I expected bad things. It was comfortable for me. I made decisions along the way that formed who I am. Some bad. Some good. But clearly there was a reason for all the hurt and I could've crawled into a ball and cried...and there were days that I did. I could've given up. I think often about what Jesus might say if He were physically standing by me in those moments. Probably something like, "what are you doing with what I have given you?" It's a hard question to face. It picks us up and dusts us off as we realize that it is because of His purpose that we pour ourselves out into whomever He places in our lives. Our family, children, friends, those in need and people who have nobody. Who am I to wallow and give up. Who am I to NOT do my best with those He has placed in my life?
Finally it becomes clear if you accept that you aren't in control. All those memories and life experiences have formed you and me into the person who can handle what is going on today. If I'm being more specific about MY life, then I'd have to say that I am able to adjust to change, be flexible, accept craziness, be different, look different, improvise and stand out. That is where the punk-rocker in my shines...lol. And yes, I believe that God allowed ALL of this so that when I had to face the challenge of Autism I would embrace it and fight through the trials with love and tenderness. If I had a great upbringing, I could not handle this, it would be terrifying and I would crumble into a big mess of emotion. I am not perfect and have my moments when I don't think I can take it but God always shows me the way and gives me His strength. I hope I'm not coming across as knowing it all because that is not my intent in any way, shape or form. I am just doing what I do, speaking for myself and from the heart and sharing my own personal experience. Hopefully shedding some light for a mom, dad or care taker who is feeling the same hopelessness with their special situation.
My life doesn't revolve around Autism, or does it? I find my thoughts gravitate to what ASD is teaching me, or rather, what my children who suffer from ASD are teaching me. I have been compelled to look deeper inside myself than I ever thought I needed to. I've had to remove scales from my eyes about my own heart and how over the years I have naively judged other parents. I escape in my mind to places I've never traveled (for those who know me intimately, it's usually England :), in order to survive those days that make ZERO sense and when my calendar is so full I actually need to be in 3 places at once and they are all equally important. I find I am a person who needs peace and quiet to concentrate on important detailed matters and because I no longer have that quiet time, I'm learning how to create a situation that motivates me enough to finish tasks that ordinary leave me baffled.
I use the word baffled now. Amazing...haha.
When I was in middle school I loved Punk music and I wore ghastly black clothes with chains and spikes. Due to childhood trauma, I also had emotional baggage that today would cost thousands in airport fees! Life was dark, mysterious and hurtful and hence I became those things too. I still find myself wanting to wear heavy black eye-liner and converse! Its comical really when you see who I am now and how I go days on end wearing whatever fits (even my husbands clothes), one would think I have no style of my own or any sense of fashion. But, in the midst of this irony, I have found a profound sense of freedom, after all aren't punk rockers rebellious in nature? Aren't they trend setters and haters of the common fashion world?
Why is she talking about punk-rockers and Autism? Where is all this going?
Please let me explain.
I am the mother of 7 children. I gave birth to 4 of them and 3 of them were entrusted to me by God. I also have what I call spiritual "adopted" children that call me mom :) They all face challenges in different ways. They have hurts and questions like I did. That is why my life was hard growing up. I'm sorry if this sounds "cliché" but lets be real, I could never understand and have compassion on my future children if I had the perfect upbringing. "There is no "perfect" upbringing" you may say...and I hear ya...but, there are "white picket fence" lives out there. Parents who stay married. Good family and friends encouraging good character. Money doesn't buy happiness but it does provide more opportunities to thrive in sports, education, travel and experiences. Everyone has trouble, yes. But, not everyone has childhood trauma.
Recently, I have uncovered some truths about me that are bringing the last 40 years into perspective. Have you ever wondered why you have encountered various things in life and why others haven't? Why your parents divorced, why you were abused, why there was never security, why you rebelled and tried drugs or allowed people to take advantage of you? I usually don't think about it and maybe I should? I have just moseyed through life and took things as they came, one day at a time. I expected bad things. It was comfortable for me. I made decisions along the way that formed who I am. Some bad. Some good. But clearly there was a reason for all the hurt and I could've crawled into a ball and cried...and there were days that I did. I could've given up. I think often about what Jesus might say if He were physically standing by me in those moments. Probably something like, "what are you doing with what I have given you?" It's a hard question to face. It picks us up and dusts us off as we realize that it is because of His purpose that we pour ourselves out into whomever He places in our lives. Our family, children, friends, those in need and people who have nobody. Who am I to wallow and give up. Who am I to NOT do my best with those He has placed in my life?
Finally it becomes clear if you accept that you aren't in control. All those memories and life experiences have formed you and me into the person who can handle what is going on today. If I'm being more specific about MY life, then I'd have to say that I am able to adjust to change, be flexible, accept craziness, be different, look different, improvise and stand out. That is where the punk-rocker in my shines...lol. And yes, I believe that God allowed ALL of this so that when I had to face the challenge of Autism I would embrace it and fight through the trials with love and tenderness. If I had a great upbringing, I could not handle this, it would be terrifying and I would crumble into a big mess of emotion. I am not perfect and have my moments when I don't think I can take it but God always shows me the way and gives me His strength. I hope I'm not coming across as knowing it all because that is not my intent in any way, shape or form. I am just doing what I do, speaking for myself and from the heart and sharing my own personal experience. Hopefully shedding some light for a mom, dad or care taker who is feeling the same hopelessness with their special situation.
Monday, April 15, 2013
We live and breathe Autism.
Since 2010, we have lived and breathed autism. Looking back, the shock of hearing the diagnosis for 2 of our children didn't even touch the reality we were about to be thrust into, like it or not, we had to learn as we went...trial and error...sink or swim. We grieved the future loss of meaningful conversation and everyday interactions became more robotic and confusing for us and them. I quickly learned that I needed to focus when behavior interventionists were teaching my children how to express themselves and how to regulate their emotions. If my then 2 & 3 year olds were learning methods, I needed to be on board!
Fast forward to 2011, when our newest arrival came home from the hospital...I was thrown into a tailspin that has lasted over a year. I won't bore you with daily schedule chaos or massive paperwork overload...but let me share my heart. I was quite honestly sinking into a pit of NO control, energy, hope, understanding, focus and my ability to gain some sanity was literally GONE! I watched my babies growing into toddlers who screamed all day to get what they wanted, and if denied access they would climb walls, chairs, shelves, tables, gates, open child proof doors, push out window screens etc. They pealed paint off the walls, smeared poop around their room, banged on doors and glass, removed diapers and clothing constantly, emptied toy boxes, drawers and cleared shelves onto the floor multiple times a day. My life was and is a living nightmare. And let me tell you the difference between A-typical children and those who suffer from Autism. Autistic children do not respond to their name, the word STOP, or explanations of danger almost to the point they appear deaf or they get excited about the concept of being chased or reprimanded and they will pursue their activity with more vigor.
I continued on as before with constant therapy and gave up my privacy, pride, personal desires and peace for a life of work that had no certain outcome. Many well meaning friends and family encouraged me to pursue something for myself, a hobby or activity I enjoy. Well, I love to write and had finished a children's chapter book a few years back and tried to get published without success. I thought, " it makes sense to make some edits and submit it again". Reality kicked in after attempting a few times to sit quietly to write or log into a computer. My dreams or pursuits were a distant memory and the more I tried to achieve them the more frustrated I became that I was failing at it. Hence, my pit was getting deeper. I was facing an empty future of nothing but autism.
I remember a stranger coming up to me when I was in the "fog" of my new reality and she said there was a method of therapy in her country that works better than anything else she has seen and that is "just give them love". Even though I was overwhelmed with "advice" and constant pressure of things I should be doing, or not doing, or trying or needing to add to my list, this comment stuck with me. I knew she wasn't talking about the automatic love we have for our children. The love she spoke of goes worlds beyond that. A love that expresses itself in small opportunities that others miss. It's physically touching, squeezing, hugging, whispering etc...instead of scolding the child so they will calm down. It's going against our natural instinct and putting our own needs aside so the child has the "best chance" to succeed in their fragile environment. Loving them this way causes us to feel, to the best of our ability, from their perspective as a lost mind trapped in a growing body. It sounds crazy and I am sure people who watch me with my children have their opinions. But when you are faced with a potential threat minute to minute, you have no choice but to learn and implement what works, and lets be honest, desperate times cause people to try anything! It's certainly not full proof and everyday without fail, we are on edge and looking for "what's next"...always on guard...all hands on deck!
My heart aches. I want my babies to have friends and to play house or dress up or learn to ride a bike and take swim lessons...writing this even makes me cry. I ask God a lot of questions. I have struggled with His reasons for allowing this to happen to our precious little ones. My husband and I go on dates and look for other outlets so we aren't constantly buried in "autism" related activities and conversations. We pray with heavy hearts, although he tends to be more hopeful than I, we do ask for healing, a miracle, even small miracles like talking or expressing concern and love for others, which we have seen answers to in recent months. Ultimately, we know that God is aware and not surprised and we see him working in our hearts to softens us when we get hard, to mold us to be like His Son, to keep us tender towards sometimes unlovely situations. In closing let me share that Autism has changed our life for good. We will not ever be autism free. We have accepted that and love our children with more openness than I ever though I could have. But we grieve the dreams we had pictured of our future. We wish that this hadn't happened for many reasons but I think the one that stands out the most is we want our children to thrive and love life and without them being able to tell us their feelings or thoughts we can only grasp onto innuendos and wonder if "one day" they will be able to tell us "Mommy and Daddy, your love for us was so evident that everyday we have felt secure and happy because of you, and that has made a life of autism life worth facing".
Sent from my iPhone
Fast forward to 2011, when our newest arrival came home from the hospital...I was thrown into a tailspin that has lasted over a year. I won't bore you with daily schedule chaos or massive paperwork overload...but let me share my heart. I was quite honestly sinking into a pit of NO control, energy, hope, understanding, focus and my ability to gain some sanity was literally GONE! I watched my babies growing into toddlers who screamed all day to get what they wanted, and if denied access they would climb walls, chairs, shelves, tables, gates, open child proof doors, push out window screens etc. They pealed paint off the walls, smeared poop around their room, banged on doors and glass, removed diapers and clothing constantly, emptied toy boxes, drawers and cleared shelves onto the floor multiple times a day. My life was and is a living nightmare. And let me tell you the difference between A-typical children and those who suffer from Autism. Autistic children do not respond to their name, the word STOP, or explanations of danger almost to the point they appear deaf or they get excited about the concept of being chased or reprimanded and they will pursue their activity with more vigor.
I continued on as before with constant therapy and gave up my privacy, pride, personal desires and peace for a life of work that had no certain outcome. Many well meaning friends and family encouraged me to pursue something for myself, a hobby or activity I enjoy. Well, I love to write and had finished a children's chapter book a few years back and tried to get published without success. I thought, " it makes sense to make some edits and submit it again". Reality kicked in after attempting a few times to sit quietly to write or log into a computer. My dreams or pursuits were a distant memory and the more I tried to achieve them the more frustrated I became that I was failing at it. Hence, my pit was getting deeper. I was facing an empty future of nothing but autism.
I remember a stranger coming up to me when I was in the "fog" of my new reality and she said there was a method of therapy in her country that works better than anything else she has seen and that is "just give them love". Even though I was overwhelmed with "advice" and constant pressure of things I should be doing, or not doing, or trying or needing to add to my list, this comment stuck with me. I knew she wasn't talking about the automatic love we have for our children. The love she spoke of goes worlds beyond that. A love that expresses itself in small opportunities that others miss. It's physically touching, squeezing, hugging, whispering etc...instead of scolding the child so they will calm down. It's going against our natural instinct and putting our own needs aside so the child has the "best chance" to succeed in their fragile environment. Loving them this way causes us to feel, to the best of our ability, from their perspective as a lost mind trapped in a growing body. It sounds crazy and I am sure people who watch me with my children have their opinions. But when you are faced with a potential threat minute to minute, you have no choice but to learn and implement what works, and lets be honest, desperate times cause people to try anything! It's certainly not full proof and everyday without fail, we are on edge and looking for "what's next"...always on guard...all hands on deck!
My heart aches. I want my babies to have friends and to play house or dress up or learn to ride a bike and take swim lessons...writing this even makes me cry. I ask God a lot of questions. I have struggled with His reasons for allowing this to happen to our precious little ones. My husband and I go on dates and look for other outlets so we aren't constantly buried in "autism" related activities and conversations. We pray with heavy hearts, although he tends to be more hopeful than I, we do ask for healing, a miracle, even small miracles like talking or expressing concern and love for others, which we have seen answers to in recent months. Ultimately, we know that God is aware and not surprised and we see him working in our hearts to softens us when we get hard, to mold us to be like His Son, to keep us tender towards sometimes unlovely situations. In closing let me share that Autism has changed our life for good. We will not ever be autism free. We have accepted that and love our children with more openness than I ever though I could have. But we grieve the dreams we had pictured of our future. We wish that this hadn't happened for many reasons but I think the one that stands out the most is we want our children to thrive and love life and without them being able to tell us their feelings or thoughts we can only grasp onto innuendos and wonder if "one day" they will be able to tell us "Mommy and Daddy, your love for us was so evident that everyday we have felt secure and happy because of you, and that has made a life of autism life worth facing".
Sent from my iPhone
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