Sunday, March 18, 2012

A Glimpse of Running Away

I remember when I was about seven years old ,I ran away from home. It was a warm, sunny day at our tiny cabin in West Virginia. My siblings and I were industrious, busy bees doing spring cleaning. I was so excited because I had been chosen to spray the Woolite carpet cleaner on the carpet of our family van. I waited eagerly for the time when I got to spray that magical foam all over (I know the excitement would have been to much for you too;) I went for a short walk because I had been told to wait a few minutes. When I returned home I found my opportunist sister had swooped in and stolen my Woolite opportunity. The whole interior of the van was sprayed and gloriously foamy. I was furious with my parents. How dare they?!? I was the one they had promised that job to but they obviously loved my sister more than me. So I jumped on my pink bike with its white wicker basket and headed for parts unknown. It turned out parts unknown were well known to my father. He found me an hour or so later, crying and dejected, sitting barefoot on my bike (for future reference peddling barefoot is uncomfortable) at the pond a quarter mile from our house. He hugged me, loaded me into the car, and brought me home. That night he taught me how to make fried chicken in the kitchen of our tiny, two room cabin in the woods of West Virginia. To this day that evening is one of my favorite childhood memories and cooking with my Dad is still one of my favorite things in the world to do (and I can make some mean fried chicken;).
This past Thursday I desperately wanted to run away again. It was a day from hell, and I mean the actual hell. The catalyst for my break down was the fact I forgot to eat all day. Since I am borderline hypoglycemic, I have to eat or I get a little crazy. However, although the catalyst, my lack of daily nourishment was not the reason for my breakdown. To be honest there were several "reasons" but when you boil them all down they came down to the fact that I am human and not Wonder Woman. Sometimes I forget this. I push on through life, trying to carry burdens for all those that depend on me, ignoring the bruises that life sometimes deals, trying to navigate the stressful white waters of our lives. Then one day that one extra straw falls on this camels back and I break down under the strain of it all. I want to take my bruised, battered self and run away for parts unknown so that I can lick my wounds. I want some one to come and find me, hug me and make me feel special all over again. I long to be that seven year old girl for just a little while.
It is in days like these that God gently reminds me that these burdens were never mine to carry, that I need to abide in Him and He will abide in me, that I am loved and important and protected. On these days God tenderly hits the reset button of my soul and tenderly refocuses my eyes on Him (where they should have been all along). He soothes the troubled waters of my heart, cleans and heals my bruised soul.
I never did run away Thursday but the good news is that I didn’t need to. God is so faithful to me in my times of greatest need. He met my needs right here in the midst of my chaos.
Friends, I don’t know if any of you were falling apart this week, carrying the weight of burdens that you were never meant to carry. If you ,like me, find yourself wanting to run away I encourage you instead to run to Him. God can soothe your troubled waters and heal you’re battered soul so much better than anything else can. I am praying for a better week this week. A week where I keep my focus on him instead of the craziness of life around me. I pray the same for you. Lots of love- Kristine

Wednesday, March 14, 2012

A Glimpse of Literature

I have a deep and abiding love for words. I know some would say this is pretty evident in the sheer volume that proceed from my mouth;) I won't deny that I have the gift of gab but that is not what I'm speaking of right now. I love language, I love the rhythm and meter of a well constructed sentence, I love that the entire emotional experience of a piece can be changed by altering just one single word. I have been known to have goosebumps and get giddy simply over the way a sentence reads. This may make me a bit eccentric....maybe even crazy to some. However, I still love the English language; thus I love literature. I don't mean I have a passing fancy for, or a slight crush on, or a brief love affair with; no I am passionate about the reading all kinds of literature, especially the classics.
My love affair began as a child. We did not have a television until I was 14 years old, so my major form of entertainment was reading. I was so different than other kids my age, the proverbial square peg that could not be jammed into a round hole. My books were not just my entertainment, they were my escape. In them I found the friends I lacked at school, in them I was beautiful and brave, in them I could count on happily ever after or at the very least a hauntingly beautiful tragic end.
It has been very important to me that I pass on my love of literature to my boys. Not just a love of reading (which is definitely a first step) but an understanding and appreciation for classic literature (even if we can't get to the big L love I have for it). My job has been infinitely complicated by two things. 1) I have all BOYS. It's not that boys can't love literature but as a whole they would much rather blow something up in a video game or toss a ball around than sit still and read some "Sappy books". 2) 4 of my BOYS are on the autistic spectrum. Autism is a communications disorder. When my boys read anything they go straight for a literal interpretation. The moon being a ghostly galleon, tossed upon cloudy seas (we'll get back to this in a minute) just about blows their brain gaskets.
Honestly, my boys can't escape the classics. I often just go around quoting some tidbit, not because I'm all that smart but because I just love the way the words of Shakespeare or Keats or Longfellow sound as they trip lightly off the tongue. However, since I have begun homeschooling I have made it a point to quote a little more often. My boys never know when I'll just break into verse. I keep it funny and add all kinds of crazy dramatization but none the less they are being exposed to the classics.
Today my son, Alex, was being a bit overly dramatic about the mention of cleaning. I just started quoting Hamlet's soliloquy to him off the cuff, adding his name in silly spots to grab his attention. After my impromptu performance Alex groaned and said "Mom, stop using Shakespeare against me!!" First, I was delighted that he recognized the piece as Shakespeare (granted it is one of the best known pieces of Hamlet but still I was pleased) but I also never want them to associate literature to something that is forced. I decided that right then and there was a great time for a sneaky literature lesson. After a few minutes, giving them time to move past Shakespeare, I began to recite Alfred Noyes The Highwayman in my most dramatic fashion (Anne Shirley would have been proud......you know Anne from Anne of Green Gables:) At first, they were all busily doing their own thing but three lines in I had a captive audience. They sat and listened to the whole piece, even Benny (my youngest who doesn't sit through anything more than 3.5 seconds long;).
I was bombarded by questions at the end "Why did he call the moon a ghostly galleon when ,everyone knows, the moon is made of rock and orbits the earth and in no way resembles a galleon?" "BTW what is a galleon?" "Why did the highwayman go back and die?" This question Jamie answered with his own commentary "It was to teach you a lesson Benny." Benny asked "What lesson" Jamie shrugs his shoulders " don't know". Alex pipes in "Obviously he was trying to teach you that men do CRAZY things for love!" Thus we had a full fifteen minutes of discussion on Alfred Noyes' poem. I don't think I could have been half as happy if I were dissecting it with experts and peers in a college literature class. My heart was nearly bursting with excitement, so much so I came and immediately penned this blog. After some pretty discouraging weeks in homeschooling and autism departments, it was fabulous to see a glimpse of my hard work paying off. It is these little glimpses that keep me going when at times I feel like giving up and finding a different school option. The road map of our lives is never unfolded all at once. All one can do is walk the path in front of them and wait to catch a glimpse of what is to come. Today's slight glimpse gave me hope. In leaving I give Alfred Noyes classic The Highway Man (it's one of my favorites). Lots of love friends-Kristine


The Highwayman

PART ONE

I

THE wind was a torrent of darkness among the gusty trees,
The moon was a ghostly galleon tossed upon cloudy seas,
The road was a ribbon of moonlight over the purple moor,
And the highwayman came riding—
Riding—riding—
The highwayman came riding, up to the old inn-door.

II

He'd a French cocked-hat on his forehead, a bunch of lace at his chin,
A coat of the claret velvet, and breeches of brown doe-skin;
They fitted with never a wrinkle: his boots were up to the thigh!
And he rode with a jewelled twinkle,
His pistol butts a-twinkle,
His rapier hilt a-twinkle, under the jewelled sky.

III

Over the cobbles he clattered and clashed in the dark inn-yard,
And he tapped with his whip on the shutters, but all was locked and barred;
He whistled a tune to the window, and who should be waiting there
But the landlord's black-eyed daughter,
Bess, the landlord's daughter,
Plaiting a dark red love-knot into her long black hair.

IV

And dark in the dark old inn-yard a stable-wicket creaked
Where Tim the ostler listened; his face was white and peaked;
His eyes were hollows of madness, his hair like mouldy hay,
But he loved the landlord's daughter,
The landlord's red-lipped daughter,
Dumb as a dog he listened, and he heard the robber say—

V

"One kiss, my bonny sweetheart, I'm after a prize to-night,
But I shall be back with the yellow gold before the morning light;
Yet, if they press me sharply, and harry me through the day,
Then look for me by moonlight,
Watch for me by moonlight,
I'll come to thee by moonlight, though hell should bar the way."

VI

He rose upright in the stirrups; he scarce could reach her hand,
But she loosened her hair i' the casement! His face burnt like a brand
As the black cascade of perfume came tumbling over his breast;
And he kissed its waves in the moonlight,
(Oh, sweet, black waves in the moonlight!)
Then he tugged at his rein in the moonliglt, and galloped away to the West.



PART TWO

I

He did not come in the dawning; he did not come at noon;
And out o' the tawny sunset, before the rise o' the moon,
When the road was a gypsy's ribbon, looping the purple moor,
A red-coat troop came marching—
Marching—marching—
King George's men came matching, up to the old inn-door.

II

They said no word to the landlord, they drank his ale instead,
But they gagged his daughter and bound her to the foot of her narrow bed;
Two of them knelt at her casement, with muskets at their side!
There was death at every window;
And hell at one dark window;
For Bess could see, through her casement, the road that he would ride.

III

They had tied her up to attention, with many a sniggering jest;
They had bound a musket beside her, with the barrel beneath her breast!
"Now, keep good watch!" and they kissed her.
She heard the dead man say—
Look for me by moonlight;
Watch for me by moonlight;
I'll come to thee by moonlight, though hell should bar the way!

IV

She twisted her hands behind her; but all the knots held good!
She writhed her hands till her fingers were wet with sweat or blood!
They stretched and strained in the darkness, and the hours crawled by like years,
Till, now, on the stroke of midnight,
Cold, on the stroke of midnight,
The tip of one finger touched it! The trigger at least was hers!

V

The tip of one finger touched it; she strove no more for the rest!
Up, she stood up to attention, with the barrel beneath her breast,
She would not risk their hearing; she would not strive again;
For the road lay bare in the moonlight;
Blank and bare in the moonlight;
And the blood of her veins in the moonlight throbbed to her love's refrain .

VI

Tlot-tlot; tlot-tlot! Had they heard it? The horse-hoofs ringing clear;
Tlot-tlot, tlot-tlot, in the distance? Were they deaf that they did not hear?
Down the ribbon of moonlight, over the brow of the hill,
The highwayman came riding,
Riding, riding!
The red-coats looked to their priming! She stood up, straight and still!

VII

Tlot-tlot, in the frosty silence! Tlot-tlot, in the echoing night!
Nearer he came and nearer! Her face was like a light!
Her eyes grew wide for a moment; she drew one last deep breath,
Then her finger moved in the moonlight,
Her musket shattered the moonlight,
Shattered her breast in the moonlight and warned him—with her death.

VIII

He turned; he spurred to the West; he did not know who stood
Bowed, with her head o'er the musket, drenched with her own red blood!
Not till the dawn he heard it, his face grew grey to hear
How Bess, the landlord's daughter,
The landlord's black-eyed daughter,
Had watched for her love in the moonlight, and died in the darkness there.

IX

Back, he spurred like a madman, shrieking a curse to the sky,
With the white road smoking behind him and his rapier brandished high!
Blood-red were his spurs i' the golden noon; wine-red was his velvet coat,
When they shot him down on the highway,
Down like a dog on the highway,
And he lay in his blood on the highway, with the bunch of lace at his throat.

* * * * * *

X

And still of a winter's night, they say, when the wind is in the trees,
When the moon is a ghostly galleon tossed upon cloudy seas,
When the road is a ribbon of moonlight over the purple moor,
A highwayman comes riding—
Riding—riding—
A highwayman comes riding, up to the old inn-door.

XI

Over the cobbles he clatters and clangs in the dark inn-yard;
He taps with his whip on the shutters, but all is locked and barred;
He whistles a tune to the window, and who should be waiting there
But the landlord's black-eyed daughter,
Bess, the landlord's daughter,
Plaiting a dark red love-knot into her long black hair.

Saturday, March 10, 2012

Just for Laughs

It is no secret that Skiffland runs low in the estrogen department. In a kingdom of 7 people and 2 cats, I am the sole female....yes that's right, even the cats are male!! To say that I am outnumbered would be a bit of an understatement.
A family of mostly males has its own unique issues. For example, I prepare to clean bathrooms as if I'm engaging in chemical warfare. This is a dangerous mission that is not for the faint of heart. I know the odds are that I will go in and never come out or more terrifyingly likely, I will be transformed by the toxic fumes into a deformed super villain. If you ever notice that my eyes are glowing orange or my hair has a green tint, just have me admitted. Please grab the straight jacket I bedazzled just for this scenario. It's hanging next to my wedding gown in my closet. ;)
Another thing that is different in our house is that my boys are pretty much oblivious to the differences between girls and boys (for now at least;) Asperger's and Autism only magnify this oblivion. Once when asked how to tell a boy cat from a girl cat my oldest replied "That's easy! A boy cat will always have a scar next to its right eye." Like I said, oblivious (and don't ask me where he came up with that answer because I have no idea).
Thursday I was sitting down doing school with some of the boys when my youngest, Benny (7), tapped me on the shoulder. He was standing next to me, shirtless. This is the conversation that ensued. Warning: Uncontrollable laughter is likely to occur. Please do not read while at work, in a library or most importantly, during your child's nap time.


Benny: Mom what are these things on my chest? (he was pointing at his nipples)
Me: Those are nipples.
Benny: What do they do?
Me: On Boys they don't do much but on girls they feed babies.
Benny (looks down at my shirt): On girls they are HUGE! I'm glad I'm a boy!! Hey guys, (and he runs off to share his new found knowledge with his brothers)


I love my guys. They make me laugh all the time. I hope you enjoyed this laugh as much as I did. I pray a great week for each of you. Lots of love-Kristine

Sunday, February 26, 2012

A Glimpse of Vulnerability

To be transparent, to be free
To be vulnerable, to be brave
To swallow my own dread and apprehension
To clasp those around me to my true self
To let go of my silent inhibition
To grant you access to my silly self
This is my desire
This is my fear
-Kristine Skiff



There are times when writing this blog is uncomfortable for me. Don't get me wrong, I LOVE sharing my life with you this way. However, being transparent and vulnerable is not always a comfortable thing for me. The fact is that I am actually much more comfortable getting lost in my own little world when things get tough. So much so, that when my friends have not seen a facebook posting from me in 48 hours they begin lighting up my phone with text messages asking what is wrong because they know the only time I'm quiet is when something is going on. If they don't get a satisfactory response they show up at my doorstep to check in on me. First, I have to say I have awesome friends that care enough about me to notice (and believe me I do not take them for granted) but again this places me in the sometimes uncomfortable position of confronting things I would much rather just ignore until I am ready. The past month has been one where I have been forced to face somethings I prefer to ignore, vulnerabilities have been exposed that I thought I had covered in thick armor. I can't say truthfully that I have figured out all the answers. The things I am facing are not simple fix things. There is no pretty princess band-aid that will make these things all better. However, I am learning in a deeper way the importance of friends that speak truth into your life, the importance of being vulnerable enough to share the deepest pains and trials with a select few.
Vulnerability, transparency these things are often scoffed in today's society. Society teaches us only a fool exposes his vulnerability to anyone. Society teaches us our weaknesses are weapons that will be used against us. Society says to obscure our trues selves so that no one has the opportunity to reject us. There is the truth that we should not lay our pearls before swine. We certainly should be wise with who we choose to share our deepest pains and struggles with. Unfortunately for many of us, we choose not to share with anyone at all. Best to be alone than to risk rejection; it's better to keep everyone at arms length where no one can get close enough to hurt us. If you are like me these lessons are hard won. People have used my weaknesses against me. People have broken my trust, people have broken my heart. Even in my forgiveness of others, I have become calloused toward people. If I am going to be completely honest here there are some walls I have no idea how to take down. I am by no means completely arrived on this journey of vulnerability. Indeed, i am taking my own wobbly baby steps. But I know the truth remains that God calls us to a life of transparency and vulnerability, to a life of beautiful brokenness. Some of you read that word brokenness and think of weakness. It is my contention that true brokenness takes incredible strength. To be totally open before God, allowing him to use you in whatever way he chooses, to know that no matter what happens in this life, what hurts you may encounter, that he is able to and WILL take care of you. Yes transparency and vulnerability take great faith. Faith is one of those words some of you will have a hard time reading. Some of you have been wounded by people who use the word faith like a weapon, telling you that if you had enough faith healing would have occurred or money would have arrived or you would have been protected. That isn't faith. That is manipulation. Faith isn't about how much you give or how much you are healed or what car you drive. Faith is a condition of your heart. Faith is having the confidence within your heart of hearts of who God is, of his true character, of his love for you, of his everlasting, unchangeable, always just, always righteous nature. Faith isn't about what you can get out of God or what he can do for you. Faith is about your relationship with an unfathomable God. Faith is about having the confidence to do and be what God has called you to because you know in your knower that God has you in the palm of his hand. And here is where all this comes full circle for me: If I truly have faith in who and what God is I have no choice but to be venerable and transparent to the people He has placed around me.
So this is what God has been working in me personally over the past couple of weeks. I know it isn't funny, or about the family, or about autism but it is about me....the real me that is still learning and growing. Hopefully I din't bore y'all too much but this my heart tonight as I sit and contemplate, in the quiet of the evening. Lots of love-Kristine

Saturday, February 18, 2012

A Glimpse of the plague

The Queens Song of Lamentation
(Yes this is a mite overly dramatic. But I reserve the right to be a smidgen melodramatic after the past two weeks;)
Sickness, Sickness It's everywhere
Stay away; we won't share
Behind the post, locked behind the door
Still it's coming more and more
I look in the mirror, I look to the sea
Sickness, sickness drowning me
Children sweating, eyes a'glaze
I'm so tired, in a daze
Tomorrow comes, Tomorrow goes
Sickness, Sickness flows; it flows
Antibodies join the fight
Someone, Someone show the light
Say that this is gonna end
that tomorrow is again my friend.
Sickness, Sickness it's everywhere
Coming, Coming past my dare


Skiffdom has been under attack. It's defenses have been breached and the enemies have laid siege to the kingdom. The Queen has been fighting a long hard battle for two weeks; desperately trying save her people from the pillages of war. Finally a thick, thick mist has settled upon Skiffdom, obscuring the travelers view of the kingdom. This warrior mist carries scent of linen and kills 99% of all invading armies. It is written in the text of old that whenever the kingdom is under attack, the Queen must call upon the mist of Lysol and the kingdom shall be saved. It is said that once the mist has been called the Queen must journey to the pool of Clorox. From the pool she will draw buckets of the sparkling liquid and wash all the kingdom in it's pungent waters. All linens and garments of white shall be soaked in the waters which will kill any lingering germs and restore the linens to their snowy glory. Thus the queen labors to rout the enemy and bring victory to the Land of Skiff.


I HATE strep with an abiding, deep passion!!! There I said it, I feel better now;) Strep has been the bane of our existence. At least twice a year we fight this nasty, disgusting bug. I'm not sure exactly why we Skiff's are so strep prone. There are studies that indicate a link between high incidents of strep and autism. Whether this is plays a part or not, I can't tell you for certain. What I can tell you is that if strep is within 100 miles of the Skiff household we will get it; not we will probably get it. No, we will definitely , without fail get it. This has made me quite the expert on the treatment of strep in our house. Normally it is taken care of with little fuss or muss. However, this particular strep outbreak managed to take me down as well. This has made for an interesting last week to say the least. As the saying goes "If momma ain't happy; aint't nobody happy". Not only did I get strep but I also developed an allergy to the antibiotics, probably due to its interaction with another medication that I take. On the night I had the reaction (because all emergencies must happen late on a Friday night when all doctors offices are closed. This is the law of Skiffland) I was very blessed to have a dear friend who kept checking on me throughout the night into the wee hours of the morning, even offering to drive me to the hospital (which thankfully was unnecessary). Thankfully, I think the worst is over. I think we are FINALLY on the mend.
Throughout these past few weeks, we have been incredibly blessed to have friends checking on us daily, offering their help in any way, and making us smile. Today as I was out getting my new prescription and my boys tacos for lunch I passed a friend in the parking lot. She waved me over had handed me a necklace through the car window. This just made a nice ending to a really rough week. So this is your glimpse of Skiffdom, plague ravaged but still incredibly blessed. Thanks to you my friends, wherever you may be. You are each a blessing to me. Lots of Love-Kristine

Sunday, February 12, 2012

A Raw Glimpse of a Caretaker

I remember when my boys were babies and we were still brand new to this spectrum thing, I would often look out the windows of my house and see steel bars. Not literal bars but they were as real as the bars on any prison window. Every stay at home mom of small children can at times feel house bound but when you are a caretaker for someone with special needs the reality is often you are chained to your home. A caretaker is not necessarily someone who has a child with special needs. It can be someone who is caring for an aging parent, or caring for a loved one who is fighting cancer, or an invalid spouse. A caretaker is someone who is responsible for the care and wellbeing of someone who is unable to care for themself for an extended period of time. The amount of effort and expense it takes to find someone to fill your shoes for just a few minutes makes the simplest outing feel as impossible as a trip to the moon. People are quick to tell you "Oh honey you need to take a few minutes for you. It isn't healthy for you to be cooped up all the time." After about the dozenth time of hearing this, you just smile, nod and move on with your day. It isn't that you don't want to get out or that you are too stubborn to take a break; the truth of the matter is you can't. Even the well-meaning who offer help soon become overwhelmed and just disappear after handling only a fraction of your daily existence. So now what you’re left with are concerned friends that add yet another layer of guilt on your already unbearable load because you aren't taking proper care of your own needs.
This is a very real problem in our community. Burn out, depression, and loneliness for caretakers makes the day to day life seem overwhelming. Even extended family members have no idea how to help you. The truth is often caretakers feel like Job, abandoned by God and man, except for the "friends" who always are there to point out what you should be doing differently. It isn't that people cease to care but it is heart wrenching. It is often easier to turn our back on the situation than it is to continually be faced with such heartbreak. Even the church is guilty of this. We judge, we rationalize, we get busy but rarely do we stop our daily lives to help.
I spent years in this place. I was so desperate for help that I once wrote a note asking the Mormon missionary girls who were constantly in my neighborhood if they would be willing to babysit my kids (for pay) once a week while I cleaned my house. I stuck the letter on their windshield (they always parked on the street in front of my house). I figured I could deal with a little proselytizing if it meant I could do the dishes without someone getting hurt or melting down. They never came back to my house. I'm pretty sure they were convinced I was some sort of freak or an axe murderer. In actuality, I was desperate. It wasn't that we didn't have a church or family. We did but for whatever the reason, and there were a myriad of reasons, there was no help for to be had.
We have been blessed the past 4 years to be in a community where we are surrounded with friends that are a true support to us. I never knew what it was like to have this kind of support; I didn't know it was even possible. I am beyond grateful for the friends who now walk this road called life with us. But oh how my heart breaks for my fellow sojourners on these roads that are still walking alone. I know your road well. I know how your shoulders ache at the end of the day from the load they have carried, I know how you cry alone in the night (when no one else can see the tears), I know how there are days when you would trade all you had just to go to McDonald's and grab a cup of coffee by yourself. To just sit there for ten minutes without a thing needed from you. It isn’t that you resent what you are doing, it isn’t that you love the ones you are caring for less. It’s just that you are so very tired.
Yesterday I was privileged to attend a conference held through a national Christian organization that ministers to women. I love this ministry and see the huge amount of good they do. However, when I asked if they had any ministry geared for caretakers I was told no. They were very open to hearing my ideas but as of now they have nothing. That answer broke my heart. Caretakers are a large demographic of our society yet they are so easily over looked and disregarded.
So today I am publicly acknowledging a problem and I am asking you my fellow sojourners for your input. Tell me how a ministry could best reach you, how could they lighten your load enough so that you can for one day be around other believing women and be strengthened. Please tell me what this would look like to you. Comment below or if you prefer email me at kristine.skiff@gmail.com. I really need to hear from you. I want to put together a comprehensive plan that details out what is most helpful to you.
To you my friends who are not a caretaker, I challenge you today to look around you. I challenge you to open your eyes to the ones that are easily over looked. I challenge you to give of yourself, of your time, of your resources, of whatever you are able, to make a difference in just one person's life. Those 30 minutes you sit with the children or the aging parent could be a lifeline to drowning person. You have no idea how very much 30 minutes of your time could change the entire week for someone. For me 30 minutes to clean my kitchen would have made a world of difference. I love you all so very much. I do not write this to condemn or to point fingers. I write this because we are called to the least of these and sometimes the least of these are the people we think are the strongest. Sometimes the least of these are the ones who carry the world on their shoulders. Lots of love-Kristine

Saturday, February 4, 2012

My Defense of Neuro-Diversity

I was running late as usual. I rushed into the meeting room, slightly out of breath, and found the closest chair. I sat back and observed the faces around the hastily pushed together tables. Mostly women with a few men scattered in the mix. Many faces were tired, shoulders heavy from having the weight of the worlds they carried on them. These are my fellow sojourners, I thought. These are me only a few short years ago. How I understand the load these precious few carry. How I understand that blessing often comes wrapped in the swaddling cloth of burden. My moment of observation ended as I was introduced. I smiled and added a few details about my life. Then the questions started, questions I love to answer, answers I hope help to unwrap blessing from the clothing of burden and rewrap it in the swaddling cloth of hope. Yes, these are my fellow sojourners and I have an amazing story to tell them. The story of my journey as the mother of children with special needs.
I was honored to be invited to attend a parent meeting put on through our local SEPAC (Special Education Parent Advisory Committee) board. I was blessed to sit on the board before I removed our children from the public school. I know firsthand what a fantastic group of people this is . They have amazing hearts for the special needs community within our town. They would never expect it but I send them huge kudos for the work they do within our community.
I get asked all sorts of questions about our journey. "What doctor do you use?", "Did this or that diet work for your family?", "What is an IEP or an ARD (as they are known in TX)?", "How can I effectively advocate for my child?" The questions are as varied as the spectrum itself.
The truth of the matter is that autism is spectral and every child is completely unique and individual; so what works for me may or may not work for anyone else. However, there are some basics that go across the spectrum. I say it often and frequently: my attitude was the first thing that changed before ANYTHING else did. I had to change my whole view. You see originally autism was something that had happened to us. It was a future robbing, energy sucking, and sanity stealing tragedy. I had to learn to embrace autism. Now many people think this makes me a Pollyanna. I don't know how often I've heard "You wouldn't feel that way if your child was more severe." or "You are not living in reality! Autism is something to fight, to cure. You might as well say that cancer is to be embraced."
Let me clarify. First and foremost embracing autism does not mean that I do not believe in therapy. I believe firmly in getting my children the most help I can to help them succeed in the world. Every child must be given tools to make his or her way out in the world. For a spectrum child, their tool belt must have many adaptive tools. In embracing autism, I accept that autism is lifelong, it does not go away. It is the way my children were made and we will work within the frame work we were given rather than fight against it. Secondly when I first embraced autism my son Jamie was severe. He screamed for at least 10 hours a day. He beat his head bloody if I didn't restrain him fast enough. He did not talk. He was not toilet trained. He broke my heart every, single day because I could not reach him. In this time is when I learned to embrace autism. You see the doctors gave me little hope for Jamie. They wanted me to medicate him to control the melt downs. I said to myself and God "God you did not give me this child without a plan. You knit him together in my very womb. I don't know what that plan is but I do know that Jamie is fearfully and wonderfully made. I know that he is not broken. I love the son that you gave me and I promise to do the very best we can for him. I accept that he has autism. Now please show me how to be the best possible mother to the son you gave me." Let me tell you that is a hard place to come to. To come accept the people in your life the way God gave them to you opposed to the way you want them to be. It was at this point that I was able to truly get Jamie help. You see before I didn't want my son to be labeled. I feared what others would think. However, Jamie being "labeled" was the absolute best thing for him. I was able to get him therapies that helped him to build the bridges of communication he needed. In Jamie's case he slowly became fully verbal. This does not happen for every child, some children remain non-verbal. This however does not reflect upon their intelligence or the plan God has for their lives. If you need proof watch the documentary "A Mother's Courage: Talking Back to Autism” It is AMAZING the huge strides being made within the nonverbal community.
Neurodiversity Rock is the mantra you will hear often in our house. I want my boys to understand and accept that God does not make mistakes. That he created each and every one of us as individuals with a purpose in this life. I have learned more from the least of these than I have ever learned from the learned and great. My life has been revolutionized by this. My family’s lives have been changed and the world in which we live our lives is being changed. God does not make mistakes, my children are not broken and neurodiversity truly does rock.

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Kristine Meier-Skiff. Powered by Blogger.