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I am the crazy mom of five boys.  Four of my five boys are on the autism spectrum. Neuro-Diversity rocks!!!  I cook, I clean, I blog, I breathe.  Yup that is about it.  If you want to catch a glimpse of our crazy world you are more than welcome but don't say I didn't warn you.

Saturday, June 24, 2017

Runaway Bay

The scream bubbled up from deep down in her soul, forced it's way past her throat and finally through her lips.  The sound reverberated through the interior of the truck bouncing from the windshield to the windows and back again.  Still the screams kept forcing themselves out of the depths of her soul.  Onward she drove, eyes dry, screams being torn from the very center of her being.  She drove without purpose or destination. She would drive until the need to runaway, the need to escape the chaos and pain subsided; until the screams could be pushed back down and the pain was buried beneath the sense of purpose that drove her.   She knew she could not truly escape, nor did she really even want to.  There were too many who depended on her, too many whom she loved; it wasn't in her to abandon them.  So she drove on, waiting for the panic to die down, for the feelings of failure to slowly ebb away and finally for the screams to replaced with healing tears.
She came to a rundown town on the lake called Runaway Bay.  The name called to her, the dilapidated buildings resonated with her emotions.  She pulled the truck into the parking lot of an old, abandoned restaurant with an ancient For Sale sign dangling crookedly on one hook.  The restaurant had a small dock in the back.  There she sat in the cold rain and finally the tears came.   She cried out all the pain, terror and anger she had been swallowing for the past week.   She thought back on the events that had led her here, sitting on an abandoned dock the day after her 40th birthday; a birthday that had been lost in the craziness of what had happened in the last week: one kid hospitalized for self harming, one who had physically attacked her after missing his medication and another who was on the verge of hospitalization because of his extreme emotional liability (on the verge as in the doctor started filling out the forms to commit him).  One week and her entire world had been shattered.  The one thing she had taken for granted, the fact she was a decent mother, now lay shattered at her feet like the shards of a broken mirror.  So she sat, she cried and she willed herself to pull her shredded insides back together for the sake of those she loved.  She would face these challenges, she would make changes and her family would not only survive, they would thrive. This is the vow she made sitting on a rotting dock in a town called Runaway Bay.

Today I'm going to write about a subject that is uncomfortable, one that often gets swept under the rug because it's easier to hide the elephant in the room than it is to address it.  Today I'm going to talk about mental illness, what happens when mental illness is not properly managed and treated.   I'm going to share these things because we have faced the nightmarish reality that happens when mental illnesses are not properly treated.  We have had a child who would not leave the house for three years because his anxiety disorders took over his life so completely, one who became so clinically depressed he started self harming and picked up scissors to slit his wrist (all the knives had already been locked away) and a child whose mood disorder was so completely out of control that he was having four and five violent meltdowns a day.  We have walked these horrific roads and if our experiences can save even one family those nightmares, then maybe a little good will come out of this suffering.
I am not new to this whole autism thing. *STOP* Rabbit trail time.  Let me be clear, I do not think autism is a mental illness.  However, many of the co-morbid conditions that often accompany it are.  These co-morbid conditions often get worse in the teen years and require serious medical intervention because if they are not managed the child's education can suffer or worse someone will get hurt.  Our boys suffer from several of these co-morbid conditions including: ADD/ADHD, GAD (Generalized Anxiety Disorder), Social Anxiety Disorder, Extreme Depressive Disorder, OCD, and DMDD (Disruptive Mood Dysregulation Disorder). *Okay, back to your regularly scheduled blog.*
  I have been advocating, therapy-ing, and even medicating our children for years now.  At first I fought medicating them.  I wanted their brains to develop naturally, without psychotropic drugs or stimulants affecting that growth.  I twisted myself into a pretzel to make sure our boys received all the therapies they needed to live a "normal" life.  I advocated hard, alienating myself from the school district the boys were attending in the process.  And for a while all my hard work and the hard work of the therapists and teachers and most importantly our boys, paid off.  They were making huge strides forward.  They were learning how to navigate this world and succeed.  I was proud of all the progress they had made.
Then the teen years hit and all the things that had worked no longer worked.  We tried new strategies and they still didn't work.  Eventually, one by one, I accepted the fact my boys would need to be medicated.  We found a psychiatrist and a psychologist.  We poured hundreds of hours and thousands of dollars into medication and therapy and though we saw small improvements our boys were not really getting better.  But we were doing everything we could, right?
Then the first week of May 2017 happened.  All the things in that story above (plus a few other things) happened that week.  I was devastated.  Let me be clear, our boys were receiving mental health treatment at the time of these breakdowns.  What I did not realize was they weren't receiving the correct mental health treatments.  Sitting in the visiting room of the psychiatric unit, waiting to see our son for the 45 minutes a day we were allowed, my husband and I came to the conclusion we needed to reevaluate EVERYTHING we were doing for our kids. There were no sacred cows, everything was up for change if it meant our boys would get the help they needed
After days of talking and reevaluation we came to the decision that our boys needed new psychiatrist.  That part was easy.  We had already been in the process of changing anyway. We now have 2 different psychiatrist for our boys.  Each one uniquely suited to the boys they see.  All the boys medication regiments have been changed and the difference we have seen is astonishing.  Our house is now mostly peaceful, the boys can actually play together and their meltdowns (the few they have had) are much shorter and are completely manageable.
  Then we had to reevaluate of psychologist.  This was harder because I genuinely love our original psychologist.  She is an amazing person.  But we had to be honest and admit her form of therapy did not work for all of our children.  We could no longer be a one size fits all mental health family.
So we found new psychologist and therapist for three of our children.  One is now in equine therapy which has been amazing for him.  He opens up to this therapist, while taking care of the horses.  This gives his hands something to do while talking and the horses relax him.
Another is with a psychologist who himself is autistic.  He has a completely different approach with this child.  He focuses on this son's strengths and helps him develop plans and strategies to build on those strengths instead of talking about the problems.  He also has this son, who has extreme anxiety issues, in a role playing group with other kids.  The psychologist writes the scenarios with specific therapeutic goals in mind and the kids have a blast playing the games while receiving therapy.
This new way of life means that I am often driving from one side of DFW to the other several times a week.  It is a crazy schedule but I would much rather do a crazy amount of traveling than have crazy, out of their gourds kids.
What does all this mean?  What am I trying to communicate? In all this rambling, I'm not sure what I want to say is clear. So here it is simplified.
1)Mental illnesses are serious and need to be treated as such.
2)They are not shameful and should not be hidden rather than dealt with.
3) In many cases mental illnesses must be managed with medication, not treating them is dangerous and could lead to serious problems.
4)Even if you are treating them do not be afraid to reevaluate and change therapies or doctors if you are not seeing the results you need.  It is easy to let the connection we make with a particular doctor cloud our judgement in seeking a second opinion.
5) One size does not fit all in mental health.  Unlike with a pediatrician, you may need different doctors and types of therapy for different kids.

We have made other changes in how we deal with things in our home as well.  But the largest changes were made in the treatments our boys receive.  The past month has been busy but it has also been much more peaceful.  Change is hard but it is well worth it.
One last thing, though admitting our son to the behavioral unit at the hospital for in patient treatment was terrifying and absolutely the hardest thing I have ever had to do as a parent, it made a huge difference for him. If you have a loved one who is self harming or threatening suicide, please seek treatment for them.  It can literally mean the difference between life and death.

I'm sorry that my last few blogs have been heavy.  I do prefer to write light and funny things but light and funny isn't the season of life we have been in.  I try at all times to be as open and honest as I can in a public forum.  To pretend to be in a place we are not does a disservice to you, my friends and readers.  Thank you for sticking with me even though the blogs have been sporadic at best.  I'm hoping that as our family life continues to stabilize I will be able to devote more time and energy to writing again.  Honestly, I miss it and I miss you all.  As always I send you my love, Kristine

Tuesday, April 11, 2017

My Blue Reality

Today I had a moment; a moment of weakness, a moment of sadness and grief.  To be clear there was no huge tragedy that befell us, not even a small emergency.  All I did was open  Facebook and scroll down my news feed.  I laughed at the usual memes, sighed and scrolled past the political rants, smiled at my friends day to day lives, even prayed for a few who have hit hard times.  Then I came to a post celebrating one of my friend's children being inducted into the National Honor's Society.  Then another friend's child won an award for the athletic achievements.  And another's child had a poem published.  I was so excited to read all these accomplishments.  I have awesome friends and they are raising great kids.  And then I had my moment.  It's a moment that you may be familiar with, if you too are blessed with kids that are special needs or a little different. You are smiling and happy, celebrating for your friends and then suddenly your reality hits in stark contrast.  A reality that is filled with therapy and specialist and more doctors appointments than I can count.  A reality that includes medication schedules and ARD meetings and long calls from the school. A reality that has meltdowns, and failing grades and long sleepless nights.  A reality where leaving the house to go for a walk is cause for great celebration, where lasting through the entire field trip is the equivalent of scaling a mountain and remembering to put on underwear and deodorant are huge milestones.
This month I light it up blue to celebrate neurodiversity and autism.  I have been blessed to be a wife and a mother to some amazing people with ASD (autism spectrum disorder).  There isn't a day that goes by that I don't get the chance to learn and laugh with these boys.
That being said, there is another reality. The reality that has me praying through my tears and signing my son's up for services for their adult years because some of them may not be fully independent.  This is my daily reality, one that is my ever present and mostly accepted companion.
I don't think twice about the fact my 12 year old is incapable of doing an eye exam without me holding his head still for the optometrist.  Or that my 16 year old is watching Sponge Bob and fighting off anxiety attacks while other boys his age are driving and going on dates.  Or that I have to make sure my 14 year old is wearing underwear before he leaves the house.
But every once in a while it hits me like a ton of bricks, when I watch the kids that they've grown up with moving on, growing up and accomplishing things that aren't even on our radar yet; things that may never be on our radar.
Don't get me wrong, I'm excited for my friend's and their children.  I'm so happy to see all they are doing.  I don't envy their achievements. I want to see all the wonderful things to continue.
But there is a reality, my reality, maybe some of you , my reader's reality, that for a moment causes the grief and sadness to threaten to overwhelm.  Our lives are different, our achievements and milestones are on a different chart, our proud parent moment's are hard won and very often delayed.
Ours is a reality of persistence without the guarantee of results. A reality where therapies and medicine replace sports and ballet.  A reality where a hard won C is as exciting as a 4.0
 in other families.
To truly celebrate neurodiversity one cannot whitewash the hard things that come with that diversity.  Truly accepting and celebrating neuro differences is to be honest in our triumphs and in our struggles.  So this year I am celebrating Autism Awareness month through my sadness and grief.  I celebrate our achievements and I rededicate myself to our struggles.  This is my reality.  This is my celebration.  Peace and love to you my friends-Kristine








Thursday, March 16, 2017

Ways to Shame Our Mother by All The Skiff Boys

Today, after my son cursed in front of the landlord (not a simple hell or damn, no he went all out saying words that would cause a sailor to blush) I decided it was time to come clean you, my blog friends.  We all have moments where we wish the floor would just swallow us whole. Unfortunately, in Skiffdom that is an almost daily occurrence for me.  This is a list of the last three months, it isn't all inclusive by any means.  It just hits some of the highlights....or low-lights if you will.  Please feel free to laugh at my pain; I do all the time.



1. Go to school and curse out your teachers.....repeatedly.
2. Go to school and claim the reason your cursing them out is because there is NO food at all in the house.  Then force your mother to explain how you do indeed have food in the house,  you just aren't happy that you had stir-fry and not McDonald's last night....to three different school teachers, administrators and therapist.
3. Go to the doctors and have a huge meltdown....the first time he meets you....and your mother.
4. Go to the NEW doctor and claim you have no healthy food in the house so that's  why you have to eat junk ALL DAY, EVERY DAY.  Then tell him your mom refuses to cook anything that isn't meat related.  Ignore the fact there are veggies and fruit currently going bad in the fridge at home because you refuse to eat them because they don't count as food.
5. Curse in front of the landlord.
6. Loudly claim, at the therapist office that your mother drinks alcohol ALL The Time.  Then ask if drinking red wine in healthy for your heart or does it make you an alcoholic.
At this point, I wish I did drink All The Freakin' Time.
7. Sneak out of the house and walk down one of the busiest streets in the city, in a Santa hat, at midnight, in the freezing rain....to go dumpster diving at Game Stop (after watching a YouTube video about how cool this is), even though you had been forbidden from even thinking about it.  Have two cops bring you home, to your grandparents, and plead your case, claiming you shouldn't get into too much trouble because you are a great kid and you already promised to never do it again.
8. Ask about oral sex, loudly, at the grocery store.....in front of a mother and two small children.
9. Make masturbation jokes in front of mixed company.
10. Make inappropriate sexist jokes, LOUDLY, while waiting at a stop light in front of Texas WOMEN'S University. Cause your mother to get many death glares.
11. Tell the BRAND FREAKIN' NEW Doctor, you are too smart to have to do your homework or pass your classes.
12. Get in arguments in class, with a large Hispanic population, supporting Trump.
I blame their father for this.
13. Argue that Islam is a religion the oppresses women with the Islamic girl in your class who wears a hijab. Have your teacher email your mother that though you have amazingly thought out opinions, it  would be better if you learned appropriate times and places for such discussions.
14. Watch porn while at your grandparents, in your mother's guestroom, causing questions to be raised about her sexuality and proclivities.
15. Cause your mother to write a blog about all the ways you've shamed her and all the best stories can't even be put on the list because they would embarrass you once you've grown some common sense.


Saturday, January 21, 2017

From Riches to Rags: A How to Guide For Going From Middle Class to Homeless in Six Months or Less part 2

At the end of our episode yesterday, we left the Skiff's homeless and separating to live in different states.  Mom and the boys are heading to Virginia to live with relatives. Meanwhile, Dad is staying in Texas for work and trying to find a new home for them.
I wish I could say that this blog would be a lighter and funnier read than yesterday's posting.  I do try to find the humor in our lives, even in the darkest hours.  However, though there were sparks of humor, the next months were some of the darkest nights my soul has ever had.  Our family was in crisis, my sanity hanging by a thread and our marriage was a thread snap away from ending. 
Yesterday, I purposely focused on the financial things that had led to this dark place and only alluded to the effects of that stress on our family.  In order for you to understand the light and grace at the end of this story, you have to understand just how dark the night became.

"I shall not sing a May song.
A May song should be gay.
I'll wait until November
And sing a song of gray.
I'll wait until November

That is the time for me.
I'll go out in the frosty dark
And sing most terribly.
And all the little people
Will stare at me and say,
"That is the Crazy Woman
Who would not sing in May." 

 Gwendolyn Brooks- The Crazy Woman

   

 October 2016
       Shamed: Evicted, Repo'ed and Po Po'ed

Friday, September 30th found me on the road, in a rental van, with all five boys heading to my parents house,  in a complete state of shock.  The past week had brought a whole new meaning to the word "stress".  We had spent that week doing everything in our power to avoid moving.  For the first time in three years our oldest child was back in school, in a fantastic autism program.  It had taken a team of professionals and us 6 months to prepare him for this huge step back into the world of public school.  Three years prior he had a complete breakdown due to his autism, generalized anxiety disorder and teen hormones.  He had such severe panic attacks that he was unable to leave the house most days.  For three years our lives had revolved around therapy appointments with his amazing psychologist,  a medicine regiment that was fit for a 90 year old horse, and little to no sleep.  The fact that he daily faced these challenges and I could not do anything to make it better for him is a kind of hell I wouldn't wish on my worse enemy.  He was the major reason we had moved to Brigadoon, a town with a well known autism program in their public schools.  That he was finally settling into his new school, made the idea of leaving completely unacceptable. When I realized we were not going to be able to avoid the inevitable loss of our house, I met with his psychologist (she's all the boys therapist).  I sat in her office and explained what was happening and asked for the best way to handle telling the boys.  I cannot tell you what an amazing doctor she is.  Not only did she write a letter to the court explaining the reasons us leaving was a very bad idea, she also started looking for other housing for us and stopped charging us for the boys therapy until we could pay. She was one of the amazing people who God used to get us through the darkness.
Unfortunately, the letter made no difference in our circumstances with our landlord.  So we were faced with the reality that we had to leave.  My husband and I spent that last week running the insane amount of errands it takes to relocate a family on little to no notice; withdrawing kids from school,  returning library things, getting the things needed for the trip, taking care of the banking things, etc.
The level of stress was beyond anything I can describe.  This is bad for any family but it is especially bad when you have special needs kids who cannot deal with emotional upheaval of any kind.  Heck a trip to six flags for two hours leads to two days of recovery meltdowns.  The meltdowns were happening fast and furious in our house.  The Friday before I left, it all hit the fan and our oldest had a meltdown on such a scale that he had to be restrained (restraining a 6ft tall, 200+ pound teenager is not an experience I would want anyone to deal with). The noise of the meltdown led to a noise complaint being filed with the police.  Blessedly, it only took them meeting our kids to understand the situation and to offer their help.  But the fact that the police were called to our home, even though the circumstances are explainable, was a level of shaming that this girl never thought she would experience.
The fact I was packing the boys and leaving my husband behind was a huge blow to our marriage.  Even though, I wasn't "leaving" my husband, I was in reality moving myself and all of our kids 1300 miles from my husband, leaving him alone with the cat.  That does psychological damage, no matter necessary it is.
September 30th....driving with a van full of excited boys, who have no idea yet that we are leaving for more than a visit to their grandparents (on the advice of their doctor's we were told to wait to tell them until after we got there and settled in.  It was decided that the level of emotional instability would be dangerous in an enclosed vehicle, particularly in view of the huge meltdown we had just experienced the week before)....trying to make it as normal as possible for them....my heart completely broken and feeling like a complete failure as a mother and wife.......driving halfway across the country to go live with my parents (I hadn't lived home since I was single and a teenager.  Now I was nearly 40, with five kids).  I cannot tell you the amount of shame, guilt and failure that I swallowed and tried to smile through.  I can honestly say that I have never been brought so low within myself.

November 2016
The Holidays....Now what

The next two months crept slowly by; time seemed to stand still as we fell into the semblance of a routine.  Because I had no idea how long we would be in Virginia, I couldn't enroll them in school.  So I tried to do a little homeschooling for the time there.  Being a parent to the Skiff boys is emotionally draining in the best of times.  Being in essence a single parent to them, is beyond anything I can describe. 
A week after we made it to Virginia and once there was absolutely no hope that we would be moving back to our house, I told them what was going on with our housing situation.  My boys are amazing.  They initially handled the news so much better than I could have ever imagined.  But the instability of our situation, being separated from their dad, friends, things and even our beloved Phil Cat weighed heavily on them.  They were on top of each other all the time, in a strange place without their routine, meds (our new insurance took three months to kick in) or even therapists.  I am the emotional stability of Skiffdom.  I am the one that makes it better for everyone.  Everyone needed something from me that I couldn't give them.  I could not make this better.  I could only try to mitigate the consequences.
I tried to keep everyone busy.  My mother very generously allowed me to drive her SUV since I was car-less as well as homeless.  We went to parks.  We went to museums.  We went apple picking. We went to the library.   No matter where and what I tried to do, the meltdowns were constant.  If it wasn't one it was another. I shutdown, curled into myself and cut myself off from pretty much everyone who loved me, including my husband.  If you want a quick way to nearly destroy your marriage, move you and your kids halfway across the country and then emotionally shut your partner out.  It is a sure recipe for marital disaster.  Every time we talked on the phone we ended up arguing over anything and everything.  Slowly the number of calls decreased and we resorted to quick texts.  The miles between us grew with every passing day.
There were good moments that happened along the way.  I was able to reconnect with most of my siblings, friends I hadn't seen in years came to visit me, I met new family and I was able to get to know my precious nieces and nephews.
Thanksgiving my husband was able to come for a few days.  I was hoping that those few precious days would be used to reconnect.  Instead, it just emphasized the large gulf that had grown between us.  The boys enjoyed having their Dad there. But it made it that much harder for them when he left.   He felt abandoned by me.  I felt overwhelmed and neglected by him.   By the time he flew back to Texas, I was almost dreading him visiting for Christmas. I wish I could make this story prettier for you. But that wouldn't be the truth.  The truth was dark and ugly.

December 2016
Ho-Ho-Home

December dawned darker and more lonely than anything I had experienced before.  Still I was determined to make Christmas as normal as possible for my boys.  I did my best to do all our normal traditions, making cookies, drinking hot chocolate out of Christmas mugs while decorating the tree, driving around looking at lights. I went through the motions but it felt empty and lonely without my husband there to enjoy it with us.
A bright spot occurred when my sister surprised us by telling me she and the family had chipped in and raised money for us to buy Christmas gifts for the boys.  The generosity of our family and friends has humbled me over and over again throughout this whole year.  Again, I simply cannot say thank you enough.  To be loved and cared about by so many is one of the most amazing and humbling experiences.  Please know that what you gave or the kind words you said or the visit you made to us during this time was in no way taken for granted.  In fact, each of these things is stored and treasured deep within my heart.
We were working on three months of being in Virginia and nothing had changed in our circumstances.  My husband was busy working both his regular job and still working on starting his own company.  But he had been unable to find us a house.  The reality was we could no longer exist in this in between place.  It was decided that if we were unable to move back to Texas after Christmas, I was going to enroll the boys into school in Virginia and we would remain there until the end of June when school released.  Though unspoken, I believe both my husband and I knew that decision would have ended our marriage.  Our relationship was depleted, with each passing day any sentiment that remained was being twisted by anger and blame.
But God had a better plan.  A week after we had decided on that plan, my husband was able to find us a house, after months of being turned away time after time.  We had a house to move back to! It was small and in a town we hadn't even considered before but it was a place to come home to!!!
I cannot tell you what a relief this was. 
We had been brought lower in every way than we had ever been in our lives together.  Finally, there was a real solid hope.  We could move forward.
My husband moved into our new home the week before Christmas.  He immediately fell in love with the house and the town.  After months of being alone, he was finally home.
He flew to Virginia the eve of Christmas Eve.  We celebrated a wonderful Christmas with my family. The boys had an amazing Christmas, thanks to our family and friends.  And we were able to put all our finances into getting us home. So we began the process of getting packed up to drive back. 
Unfortunately, Virginia wasn't quite through with us.  We all came down with a stomach bug from hell.  We've had a lot of stomach bugs go through the house through out the years.  This is by far the worst one we ever experienced.  After four days of stomach bug hell, we were finally ready to hit the road.
Never have you seen people more excited to get back to Texas.  Pulling into the driveway was like a dream.  I cannot tell you what it is like to finally have a place after having been without a place of your own for so long. The boys loved it immediately.  They are in walking distance to all their favorite things to do.  The house is smaller but the layout actually works better for our family.  And it is so much easier for me to keep it clean because let's be honest, with five boys the majority of housework falls on me.;)
Our financial situation has stabilized a lot.  The insurance from my husband's new company is much better.  Our monthly expenses have dropped dramatically from what they were when we lived in Brigadoon. We do still need to replace the family car but that will happen in time. Right now, we are just happy to be home.
I have learned important lessons throughout this process. I have learned that I cannot do it all on my own. I go to very dark places.  I need my friends, family and most importantly my husband.  I have learned that contrary to my long held belief,  shame won't kill you.  I have learned that if you are willing to share them, the dark and shameful times will bring you even closer to the people around you.  I have learned that our marriage needs to be nurtured.  We have made it a point to spend time reconnecting since my husband came to get us around Christmastime.  Our marriage is in a much better place than it was a month and a half ago. 
Our family, as a whole, is still healing from the past year. The boys  are more settled and happy than I have seen them in a long time.  So are my husband and I.   It will take time to fully recover but we are on the right path. 



 

Friday, January 20, 2017

From Riches to Rags: A How to Guide For Going From Middle Class to Homeless in Six Months or Less part 1

Here it is, the blog I've been pondering, dreading, nervous to write for a long time.  It's also the blog many of you have been waiting for.  The blog that answer's the question, "What the heck happened to the Skiffs?"
I have endeavored to be tactfully transparent in this blog.  Believe it or not, that's not an easy thing for me.  I'm a good southern girl, raised to keep family business in the family and to smile at the outside world while your life explodes around you.  I'm the girl that hates to inconvenience anyone.  The one who apologized over and over to the nurses when I screamed out during labor.  Living the life of Skiff out loud and for real has been a long process of letting go and accepting myself, our little world and the crazy that spins up, like dust storms in the desert, in our daily lives. That said, one thing I have not been transparent in is our finances.  It isn't that I intentionally hid anything; it's just nothing ruins relationships faster than bringing money into them.   I'm a good southern girl and we all know that you don't talk finances in polite company.  So this blog has been the hardest thing I've had to write to date.  During the last four months,  I pretty much dropped off the map in all my relationships.  I had to hibernate emotionally just to survive and to stay strong for my kids through one of the hardest times our family has been through.  I still haven't really begun to process all that happened in less than six months.  That being said, because our struggle became very public, I feel it is only right that I tell the tale.  The very nature of this story means that I will be sharing more details than I am comfortable with but I can't tell you the real story without including them.  Please know my heart in sharing these things is to tell our story of the past year.  It is not because I am in anyway trying to solicit sympathy. This is our story...the good, the bad and the ugly.  We take full responsibility for the decisions that led to this road.  It isn't a pretty story but it is one we are emerging from.



"The woods are lovely, dark and deep,   
But I have promises to keep,   
And miles to go before I sleep,   
And miles to go before I sleep."  Robert Frost


                         January 2016
                         New Beginnings
Standing in the airport, at the luggage carousel, I had no idea how much my life was about to change.  Christmas Eve, my grandmother had passed away.  My husband and I made emergency travel plans to get me back to Virginia for her funeral. I had been close to my grandmother, probably closer than most people.  I  spent many hours with her watching Murder She Wrote, drinking tea, talking and reading....all at once.  It was our way.  Or swinging on her front porch in the early morning or late evening, drinking tea, talking, or just quietly sitting and rocking.  Her last years had been hard and her passing though sad was also a relief of her suffering.  So as I waited for my luggage, I was quietly contemplative about the woman who had taught me about hospital corners, how to wear make-up and how to prank snooty art dealers.  The last thing on my mind was that I would soon be moving away from the home we'd lived in for 8 years and the town that I had a love/hate relationship with.
My luggage finally made it's way to me. I exited the airport and made my way to my husband, who was excitedly awaiting my arrival with good news.  I climbed into our SUV, LuLu, and he drove me to get breakfast, which is our thing.  I sat cross from him and he shared that he had been approached with a job offer.  He wasn't really looking for a new job because he really liked the company he was at.  But this new company offered him a way forward in his career, management. He had maxed out his upward mobility at the company he was presently at.  It had the added enticement of a 20k a year raise, which was definitely a factor in the subsequent choices we made.
While being excited that he had this opportunity, I was also wary.  This job was a 6 month contract to hire, normal practice in the IT field that my husband works in.  My concern lay in the fact we are a family of many, large, monthly medical expenses.  I was uncomfortable with the health insurance the recruiter's offered for the 6 months before he was hired full time.  But with such a large raise, we felt somewhat confident that we could handle any added expenses short term.  After several weeks of negotiation, it was decided my husband would take this new job.  
One of the considerations in taking this job was that we would need to move because of the crazy daily commute it would require.  We originally intended to move in June, after the boys finished the school year.  But after a few weeks, it became very clear that we would need to move much more quickly than originally intended.  I loved the little town we lived in.  I had made so many good friends, people who were now more family than friends.  We were involved in the community and our boys had spent most of they're school careers there.  However, I also HATED the school system.  Fighting for accommodations for four special needs kids, in small Texas town, will make you enemies more quickly than campaigning for Donald Trump.  Since we had to move anyway, we shopped for the best school district we could get in.  It was the driving motivator in choosing the town we eventually landed in.  For the purposes of this blog, that town shall be called Brigadoon, a beautiful living dream that is lost to the mist. By the end of February, my husband had a new job, we had a new town, new house and a new school district.  What could possibly go wrong?
                                                     April 2016
                                           Let the Games Begin

Spring dawned with so much promise.  Brigadoon was practically perfect in every way.  The boys school district actually came to me ASKING if they could please provide more services to the boys.  If you have in any way experienced the Special Education process, you know this is about as common as seeing a flying, rainbow colored unicorn pig.  Actually, I'm pretty sure that you are more likely to experience the colorful unicorn pig than you are to be offered more special accommodations for your special needs kids.
Apart from the school system, Brigadoon was exactly the kind of town I loved.  It was full of eclectic, small town shops and the convenience of  anything I could possibly need within a couple of miles of my house.  I had 3 Chick-Fil-a's within 2 miles of my house and a coffee shop the played blues music and served amazing, inexpensive coffee!  Could any place be more perfect? Ah, Brigadoon, a beautiful dream that fades too quickly away.
Yet, even in the perfection, the rumblings of unrest were starting.  April was the first month we had to use our new insurance to pay for our medical expenses.  Our copay's had gone up by almost double.  And our meds....oh the meds....they had gone up by 10 times what we had been paying just a month before.  Those expenses added to the increase of our housing expenses and travel, more than ate up the raise that my husband had received.  Add that to the fact, the move itself had cost us 10k that was not planned, we were beginning to struggle in a way that we hadn't since we had moved to Texas 8 years before.  But there was light at the end of the tunnel.  If we could just hold on until August, my husband would be made permanent at the new company and our health insurance would greatly improve.  As our biggest financial issue was the medical expenses, this was a huge ray of hope for us.
                                          June 2016
                          The Gremlins Come Out to Play

By the time June rolled around, we were in a bad place.  Besides the above stated issues, all the little things that could go wrong were.  Our washer and dryer broke.  We had four separate flat tires, and the tires weren't even old.  My husband was working his job and doing side jobs trying to hold our heads above the water.  But as soon as we got a little relief, something else would go wrong.  He had a fender bender.  His autoimmune disease flared and he had to miss work.  I got sick. He got sick.  The kids got sick.   We all needed more meds.  It was never ending.  We simply could not catch a break.  The stress was taking it's toll on us all.  We managed to keep the details of our situation away from the kids but they could definitely feel the stress that was swirling around us like a great swarm of locust.  Everyone was on edge and our normal release valves were not an option because the finances simply weren't there.  I withdrew from most of my friends and tried to batten down the hatches and just get through until magical month of August came around.

                                        August 2016
                                      Brigadoon Dies

Once August first rolled around, we were holding our breath waiting for my husband's transition to permanent employee.  The company had a new CEO who had restructured the entire company.  The management position had never materialized and my husband hated the boring grunt work he was currently doing.  But he was willing to stay on, just to stabilize our very precarious financial position.  So we waited. And waited. And waited.  He was promised that the transition would happen but whenever he pushed for details, he was put off until later.  My husband, had several large contracts from his side work, which was blossoming into a real business.  We made the decision for him to focus on those contracts and leave the company that had still not made him permanent.  In hind sight, this was a terrible decision.  But in the middle of the craziness we were faced with, we were not thinking all that clearly. We had no more time to be put off.  We had robbed Peter to pay Paul as long as we could.  Both Peter and Paul were demanding payment and we had nothing left to give them.  
Our rent was late but we could pay it. However, when I went to pay it they refused the payment unless I could also pay the late fees attached.  We didn't have the extra cash so we received a letter to vacate or face eviction.  By the end of September we had a court date for eviction. And no idea how we were going to provide a roof for our kids.  We had voluntarily turned over our SUV to the creditors to hopefully save more money.  That was a hard blow for me personally.  LuLu had been the first decent vehicle I had ever owned.  But even with that payment gone, we were just too far in the hole. 
We did everything we could to save our house but there comes a point when your plane is hurtling toward the ground in a nosedive, that you just can't pull up anymore.  That's where we were; in a nosedive, spinning out of control and having no idea what to do next.  
I cannot begin to describe the stress and panic we were feeling.  We hadn't told anyone what was going on but we finally confided in q few good friends and our families so that they could pray for direction and a miracle for us.  
Our good friend created a Go Fund Me page to raise support for us.  That page and those who gave were a lifeline to us.  We used that money to get me and the boys safely to Virginia. 
The last week of September, we had exhausted all our resources and we decided that I would take the boys to Virginia to live with my parents while Usarian (whom had been hired a new company, with yet another raise....praise God!) waited the two weeks to start his new job, packed the house and then saved money to get us a new place.  We were blessed with dear friend's who opened their home to him during this time.  The plan was that we would be apart about a month or so but it ended up being much longer than we had planned.
I have to take a moment to say THANK YOU, to the many friend's and family who came to our aid during this time.  I cannot begin to express just how much your prayer's, support and friendship meant to us during this time.  Honestly, I don't know that we would have made it through without you all.  There were days to come that it was your words and support that were the only thing that got me through.
I also want to say a special thank you to my parents, who not only opened their home to me and our five kids, they did it with such grace and love.  Three months is a very long time to have an extra 6 people in your home, especially when 5 of those people are teen boys with special needs.  So thank you mom and dad.  I cannot begin to thank you enough.

Tomorrow I will write the ending of our story.  But for now, I'm going to sign off and enjoy the new house my family is in. And the fact we are in it together.  Stay tuned for the journey between there and here. 


Thursday, January 12, 2017

The King and His Beasts

Once upon a time there was a large, crazy family that lived in the Kingdom of Skiff.  The kingdom this family ruled was known far and wide as a land of crazy adventures, where beasts such as autism, auto-immune disease, depression and learning disabilities were somewhat tamed and made a part of the outlandish adventures for which the Kingdom was known.
The Queen, of whom you already know, was married to a King, a handsome and successful man, who had long ago leashed his own dragons of Insecurity and Self-doubt, training and eventually transforming them into beautiful, colorful, winged creatures, whom he named Ambition and Success.  Together the flew through the skies of Skiffdom, quickly conquering their latest conquest and just as quickly moving on to the next.  Ambition and Success had been bred in a cave, high upon Mount Loneliness.  Their parents were the unknown and awkward dragons: Asperger and Ignorance.  They stayed, locked away in in their cave until one day the wise Wizard traded them gold for their weak knee'd, gray and scaly twin offspring.  He promised the old dragons that their children would be his gift to a prince and that in time they would grow strong, beautiful and unique and they would  soar the skies and accomplish great feats of daring  with the prince who would one day be king.  The tired, old complacent dragons could not imagine such glory but gold is the weakness of all dragons so they happily traded their ugly offspring for the pouch of gold coins the wizard handed them.
The Wizard presented prince's parents with the ugly beasts on the day of his birth.  He smiled as he proclaimed "These beasts, ugly and small now, will one day soar the skies bringing the Prince unimaginable success and triumph. But they are young, uncared for and untrained.  They must be nurtured along with the prince for them to achieve their full potential."  The king and Queen looked at the ugly, smelly and weak beasts in horror.  Having no idea what to do with the pair, they ordered them locked away in a dank and dark turret of the castle.  They then banished the wizard from the kingdom and then forgot about the beasts. 
The beasts however, did not cease to be simply because they were forgotten. Instead they grew in the darkness, the lack of sunlight dulling their already grey scales.  The abandonment contorting their already ugly features.  They grew large and unruly, beasts that inspired terror at just a glance.
Unbeknownst to the old King and Queen, the wizard had bound these beasts to the boy prince with a spell. And though his parents had long ago forgotten their existence, he felt their constant pull and heartache.  He would sneak to the turret in the dead of night and talk to the awful beasts.  "Why were you given to me?" he would cry beating his fists against the stone walls until his hands were bloody and he was exhausted.  He would slide down the wall, curl in to a ball and finally drift off to sleep surrounded by the beasts' stench and rage.  The next morning he would sneak back to his room, bathe and go to school. There the other children either ignored the young prince or teased him mercilessly; for no matter how hard he tried he could never rid himself of the stench of the beasts,  It was bound to him just as surely as the beasts themselves were. Over the years, the prince grew into a young man, smart and handsome, yet unaware of his true gifts.  The beasts had long ago stopped growing but they were still the huge, gnarled, ugly beasts of his youth; the most unwelcome and hated gift the prince had ever received,

The time came, as it will for all young men, that the Prince leave his castle and go to make a life for himself, apart from his family.  So he packed his belongings and made the trip to Mount Elim, the last of his training before his life as King began.  As he walked toward the mountain, he would occasionally glance over his shoulder, and following him, like the grim reaper were the beasts of his youth,  He yelled at them "Go away!!! I don't want you! You have brought me nothing but loneliness, sadness and grief."  Then he would continue on his journey.  After a few miles more, he would once again look over his shoulder, to find the beasts still following him.  He looked for the largest stones he could find and would throw them with all his might, and yet the two beasts followed on, steadily, relentlessly and completely unfazed by the Prince's outbursts.

Upon arriving at the ivory towers of higher education, the Prince met many exciting and beautiful people.  Here he was able to mask the stench of his beasts because so many others had brought beasts of their own. So for the first time in his life, he was accepted by his peers.  During the days he learned the ways of the King under men and women of status and renown.  At night he laughed, sang and jousted with his fellow classmates.  And throughout it all, he tried to forget the beasts that waited just outside the walls that circled the Ivory Towers.  At night, while he wrestled with sleep, their despair called to him.  He would cover his head and ears and rock himself back and forth, trying to drown out their haunting cries.
During this time, he met a girl, not a princess, but instead the daughter of a distinguished but poor knight and scholar.  She was a pretty girl, outspoken and headstrong. He could not understand anything of her ways, which were peculiar at best and bordering on insane at worst.  She was from a far away land, where the weather was warmer and the people spoke with strange, drawn out accent.  The shoes she wore had pointed toes and high heels in the back and were entirely unsuited for the cold and frozen climate of Mount Elim.  So the girl, slid around the Ivory Towers, speaking her mind to anyone who was near, and singing as she washed dishes in the kitchen to pay for her stay in the Towers. The Prince was confounded by the girl and vowed to stay as far away from her as possible.  Yet he found himself continually drawn to her.  She was happy, even while being direct and outspoken. she spoke with conviction and compassion, And he found himself more and more seeking out her company and counsel despite his promise to avoid her.
Then one day, after months of being ignored and neglected, the beasts broke through the walls surrounding the Ivory Towers in search of the Prince.  They were as bound to him as he was to them.  They found the prince sitting with the odd girl and pounced upon him with a fervor and fury they bespoke of the neglect and abuse they had endured.  The Prince cried as they ripped at his clothes in their attempt to be close to him once more.  He shrank back into a corner, not wanting the girl to witness his ultimate shame and humiliation.  
Then the attack stopped as suddenly as it started.  Warily the Prince glanced up to see what had drawn the vicious beasts away.  Then he saw her, the odd girl, crying as she gently rubbed the heads of the beasts.  "Oh you poor things! Look at you, so neglected and abused.  Your beautiful colors have been dulled and your wings are torn but you are beautiful, unique beasts.  How could anyone treat you so?"
The prince watched in amazement as the ugly, gnarled beasts, rubbed their heads under the girls hand and began to purr.  And as he watched one of the ugly, dry, gray scales fell away, revealing a breathtaking, shimmering, colorful scale beneath.  The beauty  made him catch his breath, for he had only ever known these beast to haunt him and bring him pain.  That they could be beautiful, was beyond anything in his experience,
The prince was still  ashamed of what the girl had witnessed and had no clue how to respond to such compassion towards his deepest and darkest shame. "These monsters are my burden and shame, gifted to me at birth by a demented and cruel wizard.  Go away and speak of this no one." He shouted at the girl.  The girl sadly smiled at him through her tears "Dear Prince, you have it so wrong. These are unique creatures of beauty and speed.  They only need to be loved and groomed to show their full potential."
"You crazy girl, you know nothing of this matter." He shouted as she walked off into the night. But, even as he raged, he could not deny the beautiful scale that had appeared above the snout of each beast, as the girl had rubbed it's head.  And in that moment, a seed of hope was planted, maybe the wizard had not cursed him.  Maybe there was beauty in the beasts that stood before him.

Time marched on, as is it's way, and the Prince grew into a King.  He married the unusual girl and made  her his Queen.  Though they never again spoke of the beasts that now resided in a stable outside their small castle.  Months turned into years, their lives continued on as several children were born.  The odd, outspoken girl had become quiet and aloof because though the beasts were never spoken of, their stench was a constant reminder to her of the promise and potential that was rotting away in their stables.  And her heart broke a little more each day.

Then one day there was a knock at the door.  The queen answered it, holding in her arms another of their princes, born just a few days before.  In the doorway, stood the same wizard that had gifted the beasts to her King and in his arms were two more ugly, smelly and untrained beasts.  He smiled gently at her and said "These, my queen, are my gifts to your newest Prince.  They may be ugly and smell but if you show them love, patience and compassion, they will grow into beasts of beauty and wonder."  The queen was unsure how to respond.  For though she knew the beasts contained beauty she also knew of the kings hatred for them.
"Wise Wizard, I cannot accept your gift. I know the potential and beauty that lives inside these beasts but the King has only ever known shame and pain because of them.  He will never allow more of their kind in our kingdom." the queen responded.
"This gift is not for you, my queen.  It is for the son that you hold, in your arms, now.  You can neither accept or reject his gift, for it is his and is bound to him as surely as the beasts in the stable are bound to your husband.  You can only choose to train and nurture these beasts or ignore and abandon them.  If you choose to nurture and train them, the road will be long and hard.  At times, you will feel as if you have given all you have and yet they will require more.  Or you can chose to ignore and abandon this gift, as your husband and his parents have done.  One choice will transform these beasts into unique and beautiful creatures, the other will cause them grow gnarled and more ugly. Either way, this gift will stay with your son for the rest of his life.  There is nothing you can do to change that.  So chose wisely queen."  With that the the wizard left and the small ugly beasts followed the queen and her son through the castle, while she cried and pondered how to best train the beasts that were now her son's gift.  
The King returned that night to find his wife sitting by the fire, rocking their newborn son and petting two, small, ugly beasts just like his own, out in the stables.  He roared in anger and grief at the unfairness that his son had been cursed as he was.  His wife simply smiled and continued to stroke the beasts' heads.  "Our son will not know this curse, he will only know the gift."  she stated simply.
"Do as you will." Then the king left the room, tears flowing down his face.  That night, slept in the stables, next to his beasts as he used to do as a child.  He raged at them and yet could not deny that though dulled with time and neglect, the one beautiful scale still sparkled above each of their snouts.

The King watched the Queen as she daily studied and trained his son's dragons.  Slowly, over time, he noticed that they began to stink less and they were losing their listless grey scales.  They were young yet, so it was unclear what color the shimmery new scales would take. But instead of looking hideous, the creatures were kind of cute in, an odd way.
The King began to be drawn to the stables more frequently, and slowly his rage began to turn into compassion.  He found himself treating his beasts the way his Queen was treating his son's monsters. And his beasts slowly began to transform from ugly, smelly and terrifying creatures to majestic and unusual beasts,  The transformation was slow at first, for the beasts had known nothing but disdain from the king; and it took them a while to trust him.  The first thing to change was the stench of rot that had emanated from the beasts.  Over time they began to smell pleasantly of fresh air and woods and of what the King could only describe as freedom. Then, their appearance began to change as well, as more and more grey scales fell off to reveal the beautiful, shimmery, majestic violet, emerald and turquoise scales beneath. Slowly, the wings which had become gnarled and full of holes through neglect, began to unfurl and heal.  
The beasts were not the only things to change during this process.  The King himself began to hold his head higher, walk straighter and grew even more handsome in his confidence.
Then the day came, after several years of work, that the king brought his now beautiful beasts from the stable to live in the castle with he and his Queen.
The servants stood by in awe at the King as he smiled and led the majestic, winged creatures to his Queen, who wept silent tears of joy.  Her King and his beasts had been restored and were now ready to expand and rule their kingdom.
The King and the beasts, would arise early in the morning.  He would tether them to his chariot and fly through the skies, daily surveying and protecting their kingdom.  When he  returned at night, his beasts were a reminder and an inspiration to his son of what he and his beasts could become.

Monday, September 19, 2016

The Art Of Letting Go

I don't know who out there will read this today.  It has been so long since I sat down to write that I fear my fingers have rusted and my keyboard is collecting social security.
It isn't for lack of wanting to write.  Though I do admit to a modicum of laziness, that seems inherent in many of us artistic types.  No, my lack of verbosity has been a hard, self imposed exile. For years now, I have written to you about the ups and downs in the crazy land of Skiff.  The stories have been shared through much laughter and many tears.  However, now the Skiff boys have come to an age where their stories should be their's to share when they are ready, or at the very least mine to share when they grant me permission.  The teenage years are wrought with heartache, turmoil, growth, expansion and self actualization.  To be asked to do that while your mother is sharing your struggles with the world is unfair.

This has left me in a bit of a conundrum.  How does one gain glimpses into Skiffdom, when so many in Skiffdom long for anonymity?  I think I've figured some of that out now.  I will once again be blogging but much of it as it pertains to my children will be in a more general sense.  I do believe there is a great need for information regarding navigating these crazy teen years, especially with special needs children.  I will share what I'm learning and hopefully learn from some of you who are on the same road.  Together, we will survive. ;)
This also provides me an opportunity to share some of the things that I am learning and growing in.  I get a chance to challenge myself to be truly transparent, even in the things I find most uncomfortable; my struggles and failings.  
 My friends, there is no quick way for me to catch you up on the past six months in Skiffdom.  It has been insanely eventful: my husband changed jobs, we moved to be closer to said job. My boys started a new school system (which has been amazing). We had some extreme medical expenses, a car accident (funnily enough this wasn't related to the medical expenses), appliance deaths, our old land lord is suing us for a $20k in damages to the house we lived in for 8 years (damages we dispute. He renowed the house after we moved.).  Through a series of strange events my husband started his own company, he left the "new" 40 hour a week  job to fully pursue growing his business, after receiving several large contracts, more unexpected and crazy expenses and a few failed contracts later, we are now on the verge of losing everything: house, cars, great new school district, EVERYTHING.
I don't share this because I want you to feel sorry for us or because I want someone to magically fix this mess.  Indeed, I did everything I could to hide how bad things had become.  After all, we may be a bit zany but we are responsible adults, who are generally respected and well liked.  We are not the kind of people who end up in these types of positions, or so I told myself.
In fact, had a dear friend not created a Go Fund me account once she heard our story, you still would not be hearing about this.
With the Go Fund me suddenly everyone knew that we were in crisis.  I thought having special needs kids had cured me of my pride issues but I was wrong.  I had to truly humble myself and be vulnerable before family, friends and strangers in a way I never thought I would have to be.  I thought I lived my life in a very transparent and genuine way but I was still holding back some essential truths; truths I found embarrassing.  The past two weeks has been me learning to let go of pride.
I thought my lessons were done for a bit.  After all how much more do you want from me God?
Today, on the way home from the courthouse, I realized my lessons were far from over.
I've never been one to hold material things too tightly.  I was raised in a family where money was always a struggle.  I was raised with plenty of love and strong moral character but we didn't have a lot in the way of earthly possessions.  That combined with the fact that I've moved 30 times in my 39 years of life, gave me a rather different perspective on things. Things are replaceable, people are not" has always been my motto.  So today when I realized I needed to let go of things, I was kind of shocked.  Things aren't a huge deal to me.
Then I realized that the things I need to give up are so much less tangible than a toaster or a chair. I need to give up my insatiable need for security. We live life on the edge in many ways, so many don't realize how much I shroud myself in a blanket of security.  Security of a good job, security of a great school district, security that no matter what challenge arises, my husband and I would find a way to beat it.  The truth is though none of those things are wrong, and in most cases are wise and true, they are not where my security comes from.  Jobs can come and go, no matter what the school district, I will always have to fight for my special needs education, and my husband and I are not able to beat every struggle that arises on our own.  Our security, my security, can not be found in things, even if they are intangible.  My security must be wrapped up in Christ because he is the only one who will never fail me.
This is my lesson to grow in.  This is my burden to lay down.  Lord, give me the strength to follow you into the shadow lands,  knowing that you will never lead me astray,


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