How Long?

How long does it take to "lose one's mind?" I have always felt as though I were half-mad.  I always wondered when I might finally *snap.*  People have said I am strong.  Stronger than they.  I always denied that, because I didn't ask to have these crazy things happen to me.  I simply showed up to life, cocked my head to the side and stood there waiting while everyone else scattered.  That, my friends, is not strength.  That, my friends, is my personal brand of autism.

That's right.  I'm autistic.  And I have never heard a word used to describe me with more relief.

I think anyone would find if they stuck their necks out or if they just allowed these things to happen to them, they would be "strong" too, because what is the alternative?  The alternative is death.  We bend and sway with life or she breaks us in two.

And yet we have fragile minds.  How long does it take to "go crazy?"  Is there a set length of time?  Is it different for every person?  Are there people on earth who can endure everything and never snap?  Are those people stronger than the rest of us?  Are those people more valuable?

I don't know.  I don't think so.  But I will tell you, it took me two weeks to completely lose my mind.

It was February of 2013.  On a Friday our hoped for, prayed for adoption fell through while we were on vacation.  On Saturday we had to take our littles to the emergency room in a strange town.  On Monday we got a call that a couple of kids needed our help.  Since we were licensed as a foster home and we wouldn't be bringing a little boy home after all, we said yes. 

We opened our arms and our door and in walked two kids in desperate need of love and a safe place to recuperate.  In the following two weeks we learned that this particular case was one of the most difficult the case workers had seen.  In those two weeks we had record snows that trapped us in our home for days on end several times.  All state offices were closed, so there was rarely any help available.  We threw our energies at these kids who soaked it up and begged for more and threw more and more loops. 

In that time we learned of a very severe addiction that runs along the vein of my most severe trigger that sent me into a spiral.  I spent the next two months in complete survival mode.  I don't remember many emotions from that time.  Horror after horror washed over.  Despite watching my foster-daughter and step-daughter get baptized on my birthday, (joy of joys!  be still my heart!)  I felt no joy in my heart.  I survived on knowing we were doing good.  I survived on knowing I would be rescued eventually, even if that rescue looked like death.

Corbin spending a week at Children's hospital last March was rough.  But honestly the hardest part was not being able to FEEL the pain.  All I could do was wait for a rare moment alone to cry out and writhe, but I didn't feel much outside of deep confusion and searing anger.  Any emotions I did feel had to be pushed down, so that I didn't freak everyone else out.  I had 5 kids riding on my ability to keep my head about me and I couldn't let them down.

And I fell further into the rabbit hole.  When Allan got transferred to New York I couldn't leave fast enough.  I was terrified but I was so very relieved.  I spent the summer shell-shocked.  Northern New York woo-ed me, and yet I felt almost nothing the entire time I was there.  I was floating.  I was drifting.  I thought I was re-charging, but when autumn came and Allan left, the thinly veiled calm was gone, too.   I think a big part of the reason Disney is such a great memory is that it's such a bright spot amongst so much scorched earth.

***As I was debating publicizing this at all, I confided in a friend that I just didn't want it to sound like I haven't had any happiness in the last year, because I totally have...she described them as the occasional happy dream in a long, hard slumber.  So there you have it.  Straight from someone who has walked with me through this dreamscape ;) ***

And so the question may not be how long does it take to lose one's mind.  The better question for me became "How long will it take until my soul can once again rest?"  Once the kids and I got back to Missouri (because there was ZERO way I was going to be able to roadschool or well, do much but survive, frankly...) I found a PTSD counselor and a physical therapist and saw a dozen other doctors about all my stomach issues...not one helped things get any better until finally it clicked that I "get" Violet because we are alike and I sought out a therapist to confirm my suspicions.  She said the words, "You are pretty Aspie..." and the world looked like there might be some hope again.  But that was back in February...it still took this many more months to feel like I could tackle emotions again. 

How's that work?  Well, desperate for some help with my serious attitude issues, I finally went to a reiki practitioner.  I won't get into it, but basically it's Hippie Dippie stuff and it's right up my alley.  I felt good after that session, but the change came the next morning-at 4am-when my son ran into my room and touched my arm and asked if he could *please* lay in my bed with me.  I told him to go get his pillow and he ran off to get it. 

OH THE JOY FLOODING THROUGH ME for the little pitterpat of my boy.  I felt so much love *finally* flowing through me again and I couldn't believe it.  It was *then* that I realized I hadn't felt REAL joy in over a year.  I had a serious emotional block that I couldn't manage to kick no matter how hard I tried. 

And here I am.   Still living a very stressful life that most find daunting at best, but embarking on another journey.  It's hard.  And it's sad sometimes.  It's also full of opportunities for joy.  And I'm just happy I can feel *all* of those emotions again.  The Red Queen is behind me for now and I'm re-learning how to seize every moment. Re-learning grace.  I feel as if I'm waking from a slumber. 


Finishing and Starting

Wow, it's been too long.  Truth is, we lost momentum.  I crashed and burned after an insane 12 months.  I'm in the recovery phase, but after my own autism diagnosis, it's a long, slow process of discovering just exactly what I can expect of myself reasonably.

Tomorrow will be 1 year from the day that Corbin had his "big surgery."  We were very quiet at that time because we had foster children that we couldn't talk about publicly, but last March Corbin spent a week at Children's Mercy because of a flare up of his dacryocystitis and had the 4th & 5th surgeries of his short life. The 5th was the DCR where the surgeon removed his tear ductwork and replaced it with plastic tubing because it kept clogging and creating a fluid filled cyst.  The disorder is called dacryocystitis.  He had a very advanced case for someone his age and they typically don't like to do surgery on children of his age, but after 3 probes, 3 sets of tubes, a balloon catheter procedure and a small incision to reduce pressure, it was long past time for the DCR.

We have seen the surgeon every 3 months since the surgery for updates and to check the growth of the tear duct and today he said it is officially time to schedule the surgery to remove the plastic!  If he were an adult they would undo his sutures (in his nose) and remove it in the office, but since he is a wiggly, easily traumatized little dude, they will have to put him under for a go in the same day surgery.

Risks are minimal for this surgery and he will recover quickly, but we learned something new today:

Corbin's dacryocystitis was NOT caused by a congenital defect and he will be at risk for reoccurrence for the rest of his life.  The surgeon said it's most often brought on by allergic rhinitis.  Corbin had so many respiratory issues when he was little that it makes sense to me.  We just hope and pray this won't be an issue again for him.

So in one way, we are finally closing a chapter in the string of insanity for our family with Corbin's 6th, (and hopefully final!) surgery in 3.5 years.

We are opening a new chapter by starting an application for an Autism Assistance Dog for Violet.  This can take about 12 months.  By then we don't really know where we will be, but the good thing about a trained service dog will be that we never have to leave him/her behind.  Thanks to the Americans with Disabilities Act, we will be able to take Violet's service dog anywhere, even pet free apartments.  We have researched the benefits and feel that Violet will really do well with a service dog.  I'll announce the name of the organization once our application is approved.

Thank you so much for your prayers and encouragement.  We are doing a lot of family maintenance right now while Allan is away and when  he comes home it looks like we'll be headed back to NY state for a while.  I will try to be better about checking in.



I have a theory.  It's one theory among many.  I'm not anyone special, just someone with a theory.  Like everyone else.  Are you ready for it?  Here it is:

It's about interconnectivity and Autism.  My firm belief is that we have a Creator.  That He loves us and is intimately acquainted with us.  That He breathed His very life into our bodies.  That He loved us so much He sent a way for us to be connected to Himself, always.

We have a daughter who is not unlike other Autistic people in one way-seemingly more connected to God's design...joyful in nature, naturally contemplative and meditative, connected to weather patterns, able to read people to their very souls/intents, inquisitive, creative.  So many things about Autism are different from person to person (as we all have our unique abilities and quirks), but time and time again I read of parents sensing their child has a connection to the Other.  Something so clear to us, and yet so far away.

And why not?  If the God of the Universe breathed His very own life into us, aren't we all connected and in tune with His healing, His wisdom, His great love?

I can see that as time goes on, the world falls further and further from it's design and grand intelligence.  How did they build pyramids?  How did those faces get to Easter Island?  Stonehenge?  How does every culture on earth have it's own account of Noah, the flood and the ark?  We fall further from God and we fail to see so clearly the connections we have to Him, our present home(earth) and each other.  (I will say I believe this is by human choice, not design.  But that's not what this post is about)

So the theory goes, what if Autism isn't something to be feared or dreaded, (I do not believe it is, but our society seems to) but instead is closer to the way we were created to be?  In other cultures, classic Autists-or savants-are sometimes held up as a connection to the unseen realm.  Autism, as I've seen it, is a great paradox.  Which is exactly what God is...intense and yet gentle.  Just and yet forgiving.

What if the supposed rise in Autism rates are really just a falling of the rest of the world...a greater divide between what we were made to be an where we are, so to speak?  What if they feel so alone because they see the great divide between us all and what if they are lonely because they are more fully connected to the great Love that is God and they want to bring all those they love with them?

What if Autism is God's way of bringing more people to himself?  How many people do our little ones touch?  What if their purpose here is to transform those lives they touch?  I know my little Autist has transformed the lives of everyone in our house, quite without trying.  I know she infects everyone she comes into contact with-infects them with visions of joy and beauty and laughter and yet also with a deep sense of the injustices around us.

What if it's not us who should be teaching them how to fit into the world, but they who should be teaching us how to fit with God?  What if they know more about what *really* matters in life than we could ever dream until we drop the walls and experience Love without fear? 


Love, Not Fear

This blog post is a part of the #posAutive, #boycottautismspeaks flashblog.  I jumped on late, but I wanted to get something down, in case anyone wonders since we got Violet's diagnosis how we feel about it.

In November, Violet (5.5) was diagnosed PDD-NOS with Sensory Integration Disorder.  In laymen's terms...on the Autism spectrum.  I had been researching already, in anticipation of the diagnosis, but the weight of the actuality of  a medical professional saying, "yes...she is what you've wondered so long" was heavy.  One night, in our temporary cabin, while Allan was half a world away I sat in the tub, wondering what this meant for our girl.  I had told people "she's still the same Violet" when they asked what this meant and it was true-so why did I feel I was drowning?  Questions burned in my heart: Would she grow up being made fun of by neurotypical kids?  Would her family be her only "safe place?"  What about when Allan and I die, what if her siblings aren't still close with her?  Will she need someone to help her navigate the world? Would she be taken advantage of because of her trusting, loving nature?  Would she be able to secure a job?  Would she find a loving husband and marry?

The truth is, some people find those questions offensive, but I feel they MUST be asked.  And if the answers are no, then the child we believed we would have MUST be mourned.

BUT.  And this is a HUGE but...

THEN we must look at the child before us and let the knowledge wash over us that this child was created in God's image.  He made no mistake when He made Violet's brain.  He made no mistake when He wired her up and He entrusted her to us-to raise her into the person she was created to be.  To challenge her weaknesses and build up her strengths.  To speak life to her when the world (particularly the Auti$m $peaks world) would speak death to her and her family. 

In the few months since her diagnosis, we have spoken openly as a family about Autism and we've come to understand the same Violet in a new light.  Some things are hard to come to terms with, and we must allow each other to feel those soft spots.  But most things are breathtaking and beautiful...to see so clearly how amazing and unique she really is-it has a name!  That name is Autism.  Autism doesn't scare us because it is simply a part of who she is and from the day we found out we were expecting her, it has added beauty and mystery and LOVE to our lives.

We've also met amazing people along the way and I can't wait to build those relationships.  How could expanding the LOVE in our lives be scary?

And we will continue to press forward and learn to spread LOVE and not FEAR.  Just like Jesus taught us.

Click HERE to see the post my new friend, Kelly Green, did on this topic.  She is much more eloquent than I am.  Give me a few years ;)


2014 Begins

The dust has settled from our Disney trip (FABULOUS, and when can we go again!?) and we are now back in the midwest, planted as we seem to get these last couple years.  I do still feel like we are "Runnin' Down the Dream" though, as we've been logging over 600 miles on our car EACH WEEK.  I am really thankful for lower gas prices (averaging under 3$/gallon) and for the space/sense of safety afforded by the Suburban, but that's still a lot of miles/expense.  Soon the girls will go to the same school and that will settle down a hair.

My sister-in-law and brother-in-law purchased me a massage for Christmas and while I was there, the massage therapist talked to me about tension and loss.  I told her I was claiming 2014 as a year for restoring.  See, I did the "top 20 posts of 2013" over on my facebook page and I would be lying if I didn't read them and scoff.  I may have even said a few choice words aloud.  I am not sad to see her go, but I also recognize that it's time to grab my days by the horns and claim victory over them.

What does victory look like?  Some days it looks like survival.  Some days it looks like experiencing flashbacks so horrid I can SMELL my abuser who I haven't even laid eyes on in 20 years and yet still doing the homework the therapist assigned to me.  Some days it looks like taking the time to smile and remembering to give the kids a compliment and learning to forgive myself for only mustering a tiny bit of joy out of a whole day filled with blessings...because each day really is, no matter how my mind can try to deny it. Somedays it looks like 85 peanut butter oatmeal cookies that will look more like 50 when they reach my lonely, tired husband and his comrades.  Today it looks like writing because I need something to ground me.

Victory looks a lot different than I imagined.  Restoration means first being completely destroyed.  I know from living in a house being restored that restoration looks like a lot of hard work and a lot of days of rain when the work cannot be done, but always moving FORWARD and looking for other things to improve.

Something else that looks much different than I imagined is a healthy human being.  See, I would like to believe I'm generally a fun-loving, easy-going person.  I have deviated so far from that person at this point, that I have to wonder if that is really who I am at all.  The realization that is coming is that a person is made up of many different truths.  I am not *always* a fun-loving, easy-going person.  I am not *always* a stressed out wreck.  Who I *really* am is a hodge podge of these many colored days.  That has to be okay.  I haven't allowed that to be okay and I have missed out on a lot of grace because of it.

Something that makes me ponderous lately is how cold and dry it has been in MO.  The cold I shut down to-go into survival mode.  It means layers and yelling at kids who have thus far grown up in warmer climates to remember hats and gloves.  It means 30 mintues of letting the Suburban warm up for the babies so they can safely buckle without coats.  It means being hyper-vigilant of all the drivers on the road with me, in case there is ice. 
The dryness, though, always surprises me.  We are currently in the car so much because Violet is attending a "school" for Autistic children.  She is learning all about social skills our society deems of the utmost important and being drilled with letters.  The school is about 35 minutes from us and on the way there we cross the Missouri river, as well as many lakes and creeks.  Nearly every day the water has been frozen, and yet somehow the beds have become as dry as any Texas lake or creek in late July.  The river is so low we can see many feet of dry riverbed on either side.  When I checked our windchill warnings last week, we also had a wildfire warning, because of the excessive dryness.  It is just so strange to me when I am in the midst my lungs, eyes and fingers stinging because of the intense cold.

It reminds me that when we shut down and go into survival mode, many other things are affected, even though the current sting of that which must be survived is stealing all our senses and wit.  Sometimes I look around and wonder how things got so dried out, shriveled up and brittle.  Here's to a year full of plodding through the work of survival but staying alert to the things which need healing rain, also.  Here's to a year of restoration.

Wishing you and yours all the best in 2014, complete with joy in the moment and healing rains!