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 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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