Wednesday, February 28, 2018

A Glimpse of World's Apart

In the past, I have written about the importance of having margin in our lives.  It is so much easier said than done.  I know this is a struggle in all families but it is amplified in a special needs family.
My life consist of driving from one doctor's/ therapist/ case worker's appointment to the next; managing one crisis to the next.  I joked with my therapist that one week I was going to show up to my therapy appointment without a single emergency or crisis from the week before to report.  She literally laughed and said "Yeah, that's not going to happen".  We had a similar experience at church.  Here is a portion of what my husband wrote about it "one of the songs in church this weekend said something about God setting order to the chaos in your life. I burst out laughing, right out loud before clamping my hand over my mouth.. more because of the insanity that is Skiffdom than theology...." Usarian Skiff 2018
I wish our experience was unique to us, that going through life bouncing from one crisis was confined to the four walls of our home.  Though it feels that way at times, the truth is that we are not the only family that is balancing the tight rope between sanity and hospitalization or one paycheck away from financial disaster.  In today's society, we all live life without much margin, running constantly at full steam, praying that our family's train is able to make it around the next bend with out derailing.  The difference in our family, and in most special needs families, is that our trains don't run at full speed, they are always at turbo speed.  We have to keep the engine's of our lives in overdrive, pushed beyond what they were ever designed to do. This leads to more maintenance needs and no time or resources to do said maintenance.  When things start breaking down we are in  another crisis, one that many of you would say could have been avoided had we just......(insert advice we already know here).   However, we were stretched so thin dealing with the prior emergency that there was literally no way, time or money,  to do blah, blah, blah (no matter how small a deal it may look like to those of you standing on the outside looking in at our chaos). So we are judged for not being able to handle the small things that are now big things.
  Our friends and families become overwhelmed just hearing about our lives, so they stop asking. Or  they continue to ask and then become so overwhelmed by what we say, we know that by sharing even a small part of our world, we have become a burden. We know they love us and want to help fix the issues.  But our problems are too big to be fixed by us and they are too big to be fixed by those who love us.  The advice they lovingly give, we have already tried many times.  So we stop answering  when they ask because we hate always being a burden.  Also, we don't have the emotional energy to handle their feelings on top of our own. We have also lost the ability to once again, tactfully say their advice isn't helping ; we don't want to hurt their feelings. 
This life is isolating by it's very nature.  We are always on the go; balancing doctors, therapy, education, more doctors, more therapy.  After that, there are still the regular life things  like homework, school activities, cleaning, cooking, and paying bills, to handle.
 There is never extra money to do the fun things that friends and family want to do.  We know that someone would offer to cover us financially, once again.  But it is hard to always be the taker, always be the one in need.   On the rare occasion that we have the time and money to hang out there is the issue of finding child care, which for special needs kids is not as easy as calling the teenage girl  down the street . Heck my kids are the same age as she is or older anyway. So we just say no to the invitations and after a while we stop being invited at all.
Our lives are lived in space that cannot be comprehended by most.  If we lived life off the grid or in the shadows of society, people would at least have a point of reference.  Instead our lives happen parallel to theirs, similar enough that they think they can understand until they look closer and realize ours is an entirely different world; a different dimension that somehow broke into their reality and set up house in their neighborhood.
We long for connection, to break free of this loneliness so we try to enter their world.  We attempt to go to their churches, shop at their stores, attend their PTA meetings. But it never lasts long.  Their churches are too loud for those with sensory issues, our kids are too old for kids church but too young mentally for youth group. Shopping trips become nightmarish outings of meltdowns and judgementalism. PTA meetings have no place for our kids and they don't address the issues are kids are facing anyway. So we go back to our little worlds until the loneliness drives us out to try to connect once more, knowing the results will be the same.
We come across the occasional fellow traveler, whose world is like ours so there is understanding.  But like us, their train is plowing through life on overdrive, so there is limited time and resources for  more than the occasional meet up.  We find relationships online, our friends become global, and our interactions become a series of 0's and 1's flying across the web. These relationships are real, they are important, but they lack the personal contact that we all need and crave.  It's hard to grab coffee on a whim when you are separated by oceans and continents.
This is what it is to live in our words.  These are the truths we don't share for fear that we will offend, overwhelm or burden most of our loved ones.  Even the things we rejoice in often have an underlying sadness for those we love.  When I become ecstatic that my son remembered to shower and wear clean clothes on his own, they remember how old he is and know this shouldn't be something I'm still having to deal with.  They try to be excited with me but their grief for what could/ should be still comes through.  I however stopped grieving what could be a long time ago. I truly do celebrate what is, even if it is 10 years later than when most people experience it.
When we stop answering texts or messages, we aren't pulling away because we don't trust  or don't love them.  It's just that our world's don't match up anymore. We want to bring more to our relationships than the need for pity, judgement or grief.  Honestly, we also want more from our relationships than those things.  We long for relationships where we all can be real and equal.  It is a real conversation ender when a friend share's the struggles they are facing with finding a good coach for their son's sport of choice; then they ask you what's going on with your child.  I tell them how things are much better and leave it at that.  Being a good friend, they press for details.  I share that his behaviors are more under control since the doctors changed his meds during his last hospitalization.  Then there is an awkward silence. Their struggle is as real as mine.  Their worries about their son getting the right coach so that he can get the right scholarship, for the right college,  are not less valid or concerning than what I am facing with my son.  They are just very different.  Our world's don't align.  We live a life that has no margins; it doesn't even use paper most of the time. Their life stays at least on the page, if not within the lines.
I'm not sure why I'm writing this today, it is more stream of consciousness than my usual post.   guess the rain and our current set of crises have made me a bit melancholy and reflective.  AS always, thank you for reading. ~ Kristine

Thursday, February 22, 2018

A Universe of Love in Pieces

I remember bringing him home from the hospital, wrapped tightly in his brand new receiving blankets, so tiny he could fit in the palm of my husband's hand. He was my first child; the love I felt for him from the moment I laid eyes on his scrawny wrinkled body cannot be described.  Love is too small a word to describe the new universe of emotion that exploded within me in that single second. It was as if every heartbeat that I had now belonged completely to another being.  There was no sacrifice too great; no amount of pain too intense. No mountain was too insurmountable when it came to protecting him.  It was the purest and truest form of emotion I had ever experienced.  There are no real words to sum the expanse and the depth of that feeling.  Every mother throughout history has tried to find the words and failed.  As I looked at the most beautifully wrinkled  alienesque being that  I had ever seen, I whispered over and over "Mama loves you so much.  You are so precious.  I will keep you safe. I love you
I whispered those words through round the clock feedings, through scary illnesses, through first steps,  new siblings, meltdowns, first words, first days of school, developmental problems, eventual Autism diagnosis, long nights of homework, more meltdowns, homeschooling,  surgery, mental breakdowns and eventual mental illness diagnosis.  I whispered those words as I fought for accommodations at the schools. I whispered them as I cried quietly in the night, my heart breaking for his struggles.  I whispered them when I could no longer hug him because the feel of anyone touching him was almost painful to him. I whispered them as he cried for the loss of his dreams of normalcy.  I whispered them nightly over him after his anxiety finally settled and he fell asleep.  I have whispered those words so often that I'm sure to him they are route and hold little meaning. But each time I say "I love you, my precious boy. Mama is here. I'll protect you.",  I once again feel that universe of emotion expanding, trying to reach through my very soul and somehow make the the world understand just what this boy, now nearly a man, means to me.
So what happened I could no longer protect him from his own mind, when his disability threatened his siblings who have their own universes swirling around my soul? What happens when you have to choose the safety of the many over the protection of your precious child, who though almost grown still possesses the heart of a child?  Unfortunately, I know the answer to these questions.  I know what it is to have to shatter your own soul into pieces for the safety of all whom you love.
Our family is a family of unicorns.  All five of my boys are on the autism spectrum to some degree and have various mental health co-morbid conditions.  My oldest child was diagnosed as having Gifted Asperger's (now gifted high functioning autism) in Kindergarten.  He always had major anxiety and OCD tendencies but we were able to manage them.  However once he hit 13, he had a full metal break.  A perfect storm of events coalesced to drive him that point but telling that story would require an entire book, not one chapter.
His breakdown made it so that he could no longer leave our house without severe panic attacks, the simplest things would set off large, uncontrollable meltdowns. We lived years always on edge, emergency meds within reach, waiting for the next thing to set him off.  The most heart wrenching part of this was that my son has always had a soft heart; he would never purposely harm a fly.  But when his brain chemistry would go awry, he was no longer in control of his actions.  Our saving grace was that he was still small enough that we were able to physically restrain him when he was in danger of hurting himself or one of his siblings. That small reprieve lasted only a short time. At 14 he hit a growth spurt that still has not ended; at 17 he was 6'2 and 300lbs.   Still, we were able to keep everyone safe by being ever vigilante to separate the boys when they would start to work each other up, as brothers are want to do. We had them all on a strict regiment of medications to deal with their various issues and had emergency meds on hand to be administered at the first sign he or his sibling was starting to spiral.
It was a well monitored powder keg, waiting to explode.  We could only hope that we would be able to minimize the damage when it finally went off.  Then the inevitable happened and all our contingency plans were not enough.  The powder keg exploded.
It was evening, the most liable time of day in our home because everyone's medications are starting to wear off.  The boys were getting ready to watch a movie and drink hot chocolate.  It was a an ordinary evening.  Nothing seemed amiss.  Then, out of the blue my oldest son and my youngest son were at each other's throats, loudly arguing (about what is still debated to this day).  In a 'normal' family, this would just be brothers being brothers and it could be dealt with as such.  But in our home there are too many variables, too many syndromes and disorders that exasperate one another.  In our home a normal, brotherly, argument can lead to week long in-patient stays on the mental health ward.  My husband and I both moved quickly to intervene.  In the few seconds that it  took us to reach the boys, the argument had become physical.  We separated them, gave them each an emergency med and sent them to their separate bedrooms to calm down.  The plan was once they had calmed down we would deal with whatever had caused the ruckus to begin with. In the past, this plan of action had worked well.  However, on this particular evening, my oldest son decided he was not going to go to his room, that he was too old to be told what to do.  Again, this is a normal thing for teenagers to do, every parent faces a moment when their teenager challenges their authority.  Unfortunately in our home, normal behaviors can become extreme in an instant. This was one of those instances.  When we insisted he go to his room until he was calm, our son began to physically attack his father, my husband.  My oldest is 2 inches taller and 50lbs heavier than his dad.  Restraining him was not an option, he was no longer in control of his actions.  Talking to him, only increased the outside stimulation, pushing him further into his meltdown and he was not stopping.
In that moment I had no choice but to make the most difficult call of my life.  On that night, I broke that whispered promise I had uttered thousands of times to my son.  That night I fractured my soul into hundreds of pieces as I had to choose between the safety of my husband and other children and protecting my oldest from actions he could no longer control.   I picked up the phone and I called the police. While on the phone I informed them that my so was a minor and autistic. I requested a mental health officer come out on the call.  The 911 operator was amazing and passed on all the information to the responding officers.
Three big officers arrived at our home in a matter of minutes.  Thankfully by the time they arrived, his emergency medication had started to take affect. He was still emotional but he was no longer being violent.  The officers were amazing with him.  They talked to him calmly and stayed as he continued to calm.   Instead of being arrested, I was able to bring him to the hospital his psychiatrist works out of.
It worked out in the best possible way but the fact remains I called armed police into my home to protect the rest of my family from my son.  I had made a choice and in that choice, his protection had come secondary to the safety of everyone (including him).
I've only had to call the police about him on one other occasion.  We have been blessed that in both instances we had amazing and caring officers come out.  They understood my son's issues and worked with us.  But both of those situations could have gone very differently.  He could have become more agitated.  He could have had to be restrained. He could have been arrested.  He could have had these things on his criminal record. As a mother, this was the hardest choice I have ever had to make.  It shattered pieces of my soul that I didn't know could be shattered.
Still I would not change the choice I made.  It was the right decision to make.  Sometimes we as mom's cannot protect our children from their actions, even when those actions are driven by  brain chemistry they cannot control.  Sometimes protecting them is outweighed by saving them and/or others.  And sometimes we simply are not enough to do both.  Sometimes that universe of love looks like our heart breaking into a thousand pieces.  Sometimes that love looks like calling the police on your own child, the same child you held within your body for 9 months, in your arms through their growing up years and in your heart , and all it's pieces, forever.

Friday, February 9, 2018

Breaking Bad Theology

I was asked to share my experiences as a child, now an adult, who was raised under the parenting philosophy of needing to break a child.    This request came out of a blog post by The Transformed Wife, that was shared on a FB page for women that I manage link here,(I DO NOT ENDORSE THIS WOMAN OR WHAT SHE TEACHES IN ANYWAY.  Her teachings make me sick)  I struggled to read past the intro statement that she used to share her post on FB.  Here is a direct quote  "Our job as parents is to break our children’s stubborn, rebellious, and sinful will and replace it with a will that first wants to please and obey their parents and when they grow older with a will that wants to please and obey the Lord"

Before I truly begin I need to be clear, the stories I share here happened when my parents were not only young, impressionable, newly saved Christians but they were also young parents.  Anything they did, they did from the doctrine they were taught in a church that they believed was teaching Biblical truth.  This is not a post to bash them, as they are two of the most giving and loving people you will ever meet.  That being said, the church we attended early on in their Christian walk and during my formative years, took what were good Biblical principals and twisted them into legalistic teachings that quickly morphed into an abusive and controlling theology.  Looking back now, I can say with 100% certainty, we were in a cult, not a legitimate church.  Unfortunately these twisted and perverted teachings, have invaded the main stream evangelical and Charismatic churches.  It is because of this that I feel the need to share my experiences.  If what I experienced and learned will save just one child or woman, then I will consider this blog well worth the emotional vulnerability I experience in sharing these things.

My parents were married very young, both having come from dysfunctional homes.  They were saved before getting married, in the mid 1970's during what was known as the Jesus Movement.  Here is a link explaining the Jesus Movement for those who would like more info: link here.
I was born at home, my parents were the original crunchies (home births, homemade tofu, the works. lol).  The church they attended taught that women and children should be submitted under the headship of the man of the house.  Children needed to have their wills broken from an early age through strict corporal discipline. A mother's submission to her husband and the church was judged by how her children behaved.  Though I was protected by my parents,  older, problem children and teens, were brought before the church elders to be "disciplined" by the church leadership.   I learned very early that I was never going to be good enough to avoid punishment.  I wasn't just spanked for doing things wrong, I was spanked for my atitudes or even for what my parents thought were my hidden attitudes and thoughts.  By the time I was a young girl, I literally shook every time my father even said my name (for any reason).  I have amazing parents, my Dad has taught me more in this life about everything from theology to a good work ethic to cooking and art than I have learned from any teacher or professor.  My mom has taught me what true faith and worship look like.  Unfortunately, early on, they were deceived by abusive teachings that were taught as Biblical fact.  I can't count the number of times I was quoted  Proverbs 22:13 "Foolishness is bound up in the heart of a child; The rod of discipline will remove it far from him."  or  Proverbs 22:6 " Train up a child in the way he should go, Even when he is old he will not depart from it." or Hebrews 12:7 "It is for discipline that you endure; God deals with you as with sons; for what son is there whom his father does not discipline?";  all of which I had memorized before I was 4 years old.
The result of these experiences was that I not only had an unhealthy fear of my earthly father, I also was terrified of my heavenly father.  I spent all of my childhood and most of my adulthood into my thirties feeling like a piece of shit person, that was so incredibly sinful and evil that the only way God could deal with me was to discipline me.  I didn't deserve to be loved or accepted because I was sinful to my very core.  When I was abused, well I had that coming because I needed to be disciplined.  Fall down the stairs and nearly lose my babies, well I had that coming too because I must have been being rebellious and needed to be disciplined.  After all, God only disciplines those he loves, right?
When I was 16 my Dad brought me out on an ice cream date and sincerely apologized for the way they had "disciplined" me during my childhood.  It broke his heart that I feared him so much that I felt the need to apologize as soon as  he entered a room or that I would shake when he said my name.  Our relationship started on the long road to healing that day.
It took a long time for me to overcome that fear of authority, especially men, that I had.  
I share this because know there are other young parents out there that are being taught this same bullshit as the way to raise Godly children.  Let me be clear, what you are being taught is unbalanced and is abusive.  The Bible says in Ephesians 6:4 "Fathers, do not provoke your children to anger, but bring them up in the discipline and instruction of the Lord." and "See that you do not despise one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven." Mark 18:10
Jesus loves children.  He encouraged the children to come to him when all the adults tried to send them away.  When the disciples asked who was the greatest in the kingdom of heaven, here is how he responded "He called a little child to him, and placed the child among them. And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven. And whoever welcomes one such child in my name welcomes me.
“If anyone causes one of these little ones—those who believe in me—to stumble, it would be better for them to have a large millstone hung around their neck and to be drowned in the depths of the sea." Mathew 18:2-6
Parents love your children, guide them, listen to them and teach them the way Jesus taught us; lovingly, through stories and sitting with us instructing us in love.  We as parents can not change the hearts of our children anymore than we can change our own hearts.  But we can do real damage to not only our relationships with our kids but also to their view of God when we chose to break them. It's called breaking for a reason.  It is damaging, it is abusive and it is not how scripture teaches us to instruct our children. My parenting goal is to raise healthy and whole leaders, not beaten down and broken down followers who will submit to whatever bully is the loudest.  The only time Jesus broke out a whip and broke anything was in the temple where adults were hypocritically doing things in God's name (defiling the temple) that were abhorrent to God.  He never "broke" his disciples, even when they abandoned him to the cross.  Instead he loved them and showed that love in his forgiveness of them, even in the most egregious mistakes.  Let us use Christ as our ultimate example of  Godly parenting.

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