Showing posts with label Autism/ Aspergers. Show all posts
Showing posts with label Autism/ Aspergers. Show all posts

Saturday, February 8, 2014

A Glimpse of Acceptance

Come my friends, pull up a chair, while I bend your ear about things unclear
Things of import, things of faith, things of beauty and things of grace
This world, of mine, so precious and dear, I wish to share
Now that you are here
I've waited a while, so let us begin
Here is my story, my friends and kin

That little poem pretty much sums up the way I see this blog.  It is my virtual living room and you are my guests.  I am a story teller, a weaver of tales and my life has given me plenty of thread to weave with.  I'm never sure what each story tapestry will look like as I begin.  I pick out a few threads and just begin to tell you the story that those particular threads are a part of.  I am always surprised what the finished product is. For this reason,  people often have a hard time defining my blog.  Is it about motherhood? Autism? A personal diary? A creative venture, perhaps?  Yes, to all those and so much more.  This blog is a series of glimpses into my life, my family, my heart and my head.  No one glimpse is enough to tell the whole story but if you step back and view all the glimpses as a whole, the tapestry of me will emerge.
I say this to clarify for some of my newer guests.  You are all welcome, I am enjoying our conversations together.

The story I have to tell today is one that is still developing.  The threads are still a bit tangled and I am still working out the knots to see my way clear to the beauty inside.  So bare with me, as I may travel a few rabbit trails, or even get hung up on a brier or two.

I have been very honest about our autism story , if you will.  It has been a huge, life changing, beautiful journey.  I am blessed beyond measure by the boys God has entrusted me with.  However  even in great blessing there can be great heartache.  The trick is to feel the heartache, accept it's reality and move on to the beauty God has.
I have alluded to the rough year my oldest son had in 2013, without giving the details.  For you to understand, I am going to give more specifics.  Paul has always struggled with high levels of anxiety directly connected with both the Asperger's and his giftedness.  In February of 2013, he had an appendectomy.  
This started  full year of spiraling anxiety (though for a long time we didn't know that was what was going on).  He spent months in pain, laying in one position on the sofa, after the surgery.  We sought out specialist after specialist, made repeated runs to the ER, had every test imaginable, only to be told they could find nothing wrong.  We had to remove him from school because he would have major pain attacks almost as soon he got there.  Over the summer he seemed to improve so we decided to give school another try.  We are so blessed to have a middle school that more than worked with us.  They twisted themselves into a pretzel to accommodate Paul but in the end he still could not handle it.  A month after enrolling him I was once again unenrolling him.  It was October, this journey had started at the end of February and Paul was continuing to shrink his world.  He now confined himself to one spot, on our sofa.  His pain-free, safe zone.  Our doctor said Paul needed to be medicated for his anxiety and sent us to a Psychiatrist.  After three and a half months and two medications, Paul is doing much better.  As a matter of fact he is slowly working his way back into school! This is fabulous news.  I cannot tell you how incredible it is to see my goofy Paul coming back after a year of him being completely paralyzed by his anxiety.
Seeing how well this had worked for Paul, we decided to bring Jamie.  As Jamie has entered the pre-teen years he has become much more difficult to deal with.  He still does not correlate his action to consequences and still has a very big problem with any sort of boundary to contain his compulsive behaviors  I wanted to get a another professional opinion.
The Psychiatrist sat with Jamie and I for an hour and twenty minutes.  Jamie did most the talking and she mostly observed and asked questions.  Jamie then left the room and she and I had a long talk.  I expressed my concern about his lack of development in several key areas.  Jamie is so advanced in other areas and has been in therapy since he was about 3.  Most of the time people think I'm crazy when I express concern that Jamie may never be able to live independently.  I think a large part of me wanted to hear a professional tell me I was an overly concerned mom and everything was going to be fine. That isn't the conversation that occurred however.
Instead the doctor confirmed that there were significant developmental concerns that she could see and that unless Jamie built some of these bridges over the next few years, I was correct in thinking he would not live independently.  She also said that his major splintering (he is highly advanced in some areas and has major deficits in others) further complicated the situation.  She was not negative at all and I thought I was prepared for this news, after all I had seen it coming.  Instead hearing my intuition confirmed, broke my heart all over again.
Friends please don't tell me that the doctor can be wrong and that he still has more years of growing and maturing to do.  I know this.  We have already overcome such monumental hurdles that we were told impossible to overcome when it comes to Jamie.  I am not giving up but you need to hear my heart here, this news just about crushed me.  Even I need a moment to feel my feelings, to scream out "This sucks!" before moving on to the business of fighting and forging and finding beauty.  
It sucked that my beautiful, talented, sweet child may not be able to drive or live independently or go away to college. It sucked enough that I broke down in tears in front of a random stranger who was kind to me.  Talk about embarrassing!!  It sucked enough that all I wanted to do was curl up into a ball and cry for two days,  I didn't because life doesn't stop just because your world is falling apart.  
I called my two best friends and they listened to my heart and didn't judge me.  I cried and then I accepted it and began to move on.  This is life folks.  All the time people ask me how in the world I handle five boys, four of whom have ASD, a husband on the spectrum, both my husband and I having lifelong diseases and all the other stuff our daily life entails.  Here it is folks.  Here is the secret.  You grieve, you cry, and then you accept.  Once you accept God's plan, the why of it all doesn't matter nearly as much as the how. How is this going to work?  How are we going to plan for this or that?  In finding the how, you find the beauty of God's perfect plan, his complete provision and his amazing grace  This may read like a Pollyanna reality but it's not.  I have hard days, my heartbreaks.  I know it isn't easy, believe you me.  But in fixing my eyes on what is and not on what I wish was, I have found peace, I have found grace, and yes I have found amazing beauty.         

Wednesday, August 14, 2013

A Glimpse of a Miracle Worker

Once upon a time there was a special little boy.  Though he was born prematurely, he was perfectly formed with a beautiful olive complexion, rosy cheeks and an the sweetest angel kissed lips.  From the day he was born he had an other worldly presence about him; as if  a part of him had remained in heaven to worship with the angels.  He was innocent and frail and beautiful.  His twin brother came into the world seventeen minutes later than him.  Whereas he was frail and ethereal, his brother was handsome,robust, and alert.   Even as a newborn, the stronger, younger twin guarded over him, always looking for him, reaching for him and crying out for his needs.  After an arduous pregnancy, their mother wept tears of joy over their perfection.  They were such beautiful gifts from heaven.
As the boys grew, the younger twin was adventurous and bold.  He loved to test his limits and was independent to a fault.  The older twin, however, remained disconnected from the world around him.  It was as if he was locked in a tower, deep within his soul, waiting for someone with the right key to set him free.
He sat by himself, oblivious to all that happened around him.  He was content but so very far removed from the world around him.  
Jamie 2yrs old

That sweet, ethereal baby boy was Jamie.  His younger, stronger twin was of course Alex.
My pregnancy with them had been very traumatic.  I have written about it before so I will just hit the highlights (or low lights, depending how you look at it).  At 25 weeks pregnant I fell down a flight of stairs while carrying my one year old, Sam, down for breakfast.  Blessedly, Sam was completely unharmed but I shattered my elbow and spent the remainder of my pregnancy in and out of the hospital, mostly in.  The twins were protected but Jamie's sack had a small rupture, that slowly leaked amniotic fluid.  I watched them develop daily (sometimes several times a day) on the ultrasounds that I had.  That was pretty cool. I had many amniocentesis (where they insert a long needle into the sack and withdraw amniotic fluid for testing).  During those tests Alex would move around until he was close enough to bat at the needle to keep it away from Jamie.  What an amazing, amazing thing to watch.  I got to know my boys personalities a little before they were even born!
They were born at 35 weeks.  Jamie was in distress and had to be placed on oxygen. From the moment they were born
Jamie was different.  He never responded to human contact.  He seemed to be other worldly almost. 

As they grew, my concerns for Jamie grew.  He never broke out of that shell.  He remained alone in his own little world.  He started to talk around one years old but stopped by two.  He did not respond to pain, cold, heat, hugs, darkness, tickling, conversation or anything.  He never sought human affection on his own.  Then he started screaming, all day, every day.  He would violently beat his head.  I spent all day holding him, singing to him, counting in a monotone voice (that helped to calm him).  We brought him to his pediatrician, who sent us to a pediatric neurologist.  He diagnosed Jamie with severe autism.  He gave us very little hope that Jamie would ever improve.  He wanted us to put him on heavy seizure medications and psychotropic drugs to manage his meltdowns.  He recommended some therapies but said in his opinion Jamie would probably not respond to them. 

Our pediatrician recommended that we contact the school system.  We lived in a county, in Virginia, that had a very good autism program.  He thought they may be able to help, or at the very least give me a break a few hours a day.  We applied and Jamie was accepted into their preschool autism program.  He was barely three but everyday I loaded him and his stuffed animal onto the special bus.  He was so very tiny.

Then an amazing thing happened.  I met a miracle worker.  Her name was Erin and she completely changed our lives.
Erin was Jamie's teacher but she was oh so much more.  She came to our house to visit and observe Jamie in his home environment.  She had so much love and passion for the kids she taught.  She poured her soul into each and everyone of them.  Under her and her team of amazing therapist, Jamie began to break out of his tower of isolation.  He started talking through stuffed animals.  I will never forget the day he told me "Bunny wants a drink".  It was the first time he had expressed any kind of need or desire verbally!  Later he started talking in the third person "Jamie wants a drink".   
I cried the day Jamie looked up at me, after a meltdown and said "Jamie's broken."  I held him and rocked him and told him without a doubt Jamie was NOT broken, while my heart shattered inside my chest.  
I cried again the day Jamie came up to me and said "Jamie loves Mommy."  I picked him up and held him and rocked him and told him how much I loved him, as my heart exploded with joy inside my chest.
I cried the first time Jamie sang a song with me. There are so many, many moments like these.  Every single one of them was made possible by his teacher, our angel incognito, Erin.
Tomorrow, we will see Erin for the first time in six years.  Jamie is now ten.  He is mostly on grade level at school.  He carries on full conversations, plays with his brothers and the neighborhood kids.  He is an extremely gifted artist, loves music (especially Johnny Cash), plays video games.......all things that the pediatric neurologist gave us very little hope of ever happening.  I cannot wait to hug Erin and thank her for the gift of my son.
Jamie 10 years old



Saturday, October 20, 2012

Autism and Sleeplessness


  from: Wynken, Blynken and Nod  
                     by: Eugene Field
Wynken and Blynken are two little eyes,
   And Nod is a little head,
And the wooden shoe that sailed the skies
   Is a wee one's trundle-bed.
So shut your eyes while mother sings
   Of wonderful sights that be,
And you shall see the beautiful things
   As you rock in the misty sea,
   Where the old shoe rocked the fishermen three:
                     Wynken,
                     Blynken,
                     And Nod.



 There is nothing sweeter than snuggling the fuzzy head of a sleeping baby, or brushing the angelic cheek of your child as they slumber, or even just standing in the doorway of your child's bedroom, listening to their rhythmic breathing and quietly watching them through the soft glow of the night light.  It is in these quiet, unguarded moments, when their usually running feet are still and their usually talking lips are quiet, that we as parents get to reminisce of their yesterdays and dream of their tomorrows.  It is in these moments of peace that we can gather ourselves back together from the craziness of the day and remind ourselves on the particularly rough days that we actually do like these sweet little monsters.
But there is nothing that can drive you to the brink of insanity as a parent faster than a child who will not sleep.  It is in those long sleep deprived nights of rocking, pacing, potty runs, dink refills, even night time drives that you are brought to your lowest emotionally and physically. 
Sleep issues and autism often walk hand in hand.  Believe me when I tell you that we have walked the gamut on this with our guys.  Today I am going to go over a few of the things we have seen with our boys and some of the tricks we have found that worked.....or didn't.

The first year with my oldest son, Paul, was very difficult.  He had to nurse every 20 minutes for the first three months of his little life.  If I tried to get him to take more that that he would empty his stomach.  He just could not hold anymore down.  By the end of three months I was in a state of near delirium.  I put a sign on our front door asking people not to knock or ring the bell because the slightest sound awoke him from the precious few minutes of sleep we got.  This caused some offense to family and friends  who wanted to visit.   At that point , I was too tired  to explain.  After three months we were slowly able to stretch out his feedings to every two hours.  For the rest of the year that was our schedule.  What we did not know at the time is that many of the issues we were dealing with were directly related to autism.  Digestive issues, food sensitivities and allergies, and texture issues are common for children on the spectrum.  Paul was also a very sickly child up until three years old. By the time Paul was 3 we had three other babies, one of whom had his own set of sleep issues above and beyond that of infancy ( more on that later).  Between his feeding issues and sickness, sleep was a very rare commodity in our household.  Sleep deprivation took it's toll on both myself and my husband.  It definitely added stress to an already stressed marriage.  Neither of us was capable of being very rational when we were both so very sleep deprived.
At three, something miraculous happened, Paul started sleeping!!  Not only did he sleep, he would announce he was tired and put himself to bed, all on his own!!!  Oh happy, glorious day!!  I thought our sleep issues with Paul were at an end; that we were finally on the path to sleep filled nights!  Unfortunately, that was not to be.  Around seven years old, Paul started having a terrible time getting to sleep (this is still an issue today).  He would be in tears because he "couldn't get his brain to be quiet".  We have all had the occasional night where our thoughts race.  But with Asperger's it is often multiplied by a hundred fold.  We tried everything to get him to sleep: reading, music, a fan, white noise.....nothing worked.  Finally I did the thing I swore I would never,ever do: I put a TV in his room.  This has helped a lot.  About an hour before bedtime, we send him upstairs to his room and he spends an hour or so watching television.  This gives his brain something to focus on and he tends to fall asleep.  There are still nights that he cannot sleep, especially nights when he is stressed or excited about something ( a big test the next day or a field trip,etc).  On these nights we leave the TV on for him, certain channels only (for obvious reasons), and he eventually falls asleep.  He also has a bedtime routine he has to follow exactly.  Every night when he heads up to watch TV he makes himself a cup of peppermint tea and brings it up.  The act of making the tea and drinking it is a calming routine to him.  He cannot be the least bit stressed or he will not fall asleep.   Calm and routine are of utmost importance to Paul.
Noise is also an issue that still causes sleeplessness for Paul, though not nearly to the extent it has in the past.   Cricket season is very, very rough in our house.  Short of going out and hunting every cricket in north TX there is not much we can do about it.  Paul has had huge meltdowns over cricket noise.  Now he tends to keep the TV on on the worst nights and that gives him something else to focus on other than the crickets.

Jamie's sleep issues have lessened over the years.   When he was first born he had to be rocked asleep.  My husband and I spent hours rocking either him or his crib to get him to fall asleep, only to have him awaken as soon as the rocking stopped.  A baby swing would work sometimes but not always.  His sleeplessness would awaken his twin brother, Alex, and then we were in for a long night.  When Jamie was a toddler, he would awaken with terrible night terrors.   He would fall asleep fine but would awaken in the middle  of the night screaming, thrashing and sometimes running around the house.  I would have to rock him for hours to calm him down.  He was nonverbal at the time.  His night terrors lessened and eventually went away completely as he learned to communicate.  It seems to me, though I cannot prove it definitively, that his frustration with his inability to communicate effectively was coming out in his dreams.   This was a very heartbreaking time for me as a mother, there was little I could do for Jamie other than hold him.  
Jamie sleeps pretty well now.  The only times we have issues are when he is having growing pains.  Jamie has always grown in drastic spurts (he grew 6 inches in less than three months this year).  When these spurts occur it is very painful.  Jamie also has a routine he does every night before he goes to sleep.  He has to set up his bed as he calls it.    He has to have all his stuffed animals (and he has a lot of them) set up in a certain order on his bed, he has to have certain blankets and pillows.  We have also learned he reacts differently to stimulants and depressors than most people.  If we give Jamie Benadryl it will make him hyper (we learned this one the hard way).  When we need to calm him down we will give him some coffee.  It relaxes him very quickly. 

Benny has always needed less sleep than your average bear.  This is also common in kids on the spectrum.  I remember when he was a baby asking the doctor in frustration what was going on.  He was a fabulous old doctor who had delivered everyone and their mother in the Richmond, VA area.  He smiled at me and sagely said "some babies just don't need as much sleep."  This was not the answer I was looking for at the time ;)  However, this has remained true for Benny throughout his life.  He tends to sleep less than other kids but when he does sleep, he sleeps very deeply.  He also sleep walks occasionally.   This has been increasing this year as he closes in on eight years old.   Benny doesn't have any particular routine he adheres to.  He just tends to chat himself to sleep (which annoys his brothers to no end;)

Sleeplessness does not only affect children on the spectrum.  My husband still has real sleep issues.  He rocks himself to sleep.  This was a real issue when we were first married because it made me motion sick.  It wasn't until I understood autism that I had an understanding of the rocking.  He also has very jumpy legs ( Jamie and Paul also have this).  At first we attributed this to restless leg syndrome but research has come to light which links  autism in general and particularly Asperger's Syndrome to this type of lower limb movement.  My husband also struggles with getting his brain to turn off so that he can fall asleep.  He says that when he was a child his thoughts were so loud that they almost sounded like a crowd in his head.  He learned to "drown out the sound of his own thoughts" by rocking.  When he can't rock his whole body, he will rock his head.  

There are many studies that connect Asperger's Syndrome with these movements as well as REM sleep disruption.  I'm including a link to one of them here: http://www.pattymemorial.org/fromAutisticscc/AspSleepNeuroStudy.html .  There are many more studies and they make for interesting reading.

Over all, what I have learned is that with each of my spectrum guys sleep is as individual as they are.  Although not one single trick works for all of them, maintaining a calm and peaceful environment does seem to be essential to everyone. I chose to write about this because a friend requested this topic.  I love it when I get blog topic requests.  The feedback gives me an idea of what you all are interested in reading :)  I hope it was helpful to some of you.  Lots of love  -Kristine 


Tuesday, September 25, 2012

A Glimpse of "er"

This morning the alarm went off at five am,  just like it does every school morning.  Truth be told, I am not terribly fond of the alarm clock on any given morning but today it seemed to beep more shrilly, more loudly and more annoyingly than any previous day.  I trudged to the kids rooms and awoke them one by one.  On any given school day, it takes a few minutes of prodding and cajoling to get them moving but today it took longer and they griped louder and I was proddy-er (yes that is a word....it's my blog and I say so ;)
We made it downstairs and the light was more blaring causing the daily Jamie melt down to be more melting downy-er (again a word....see previous caveat) and the daily Benny meltdown triggered by the daily Jamie meltdown was WAY Benny-er.  Sam was slower, breakfast was wronger, Alex was more purposely annoying-er (Alex is my stir the pot kid), Paul was  Aspie-er.   It was a very "er" kind of day.
Everyday, I try to look at my life through the lens of humor.  Everyday, I try to choose laughing instead of crying. Everyday, I purpose to not let my families circumstances or disabilities define my attitude.  But today was just such an "er" day.  Today, the two months from hell collided with my "er" day and I was in a proper snit.  I dropped Paul off at school,  went home and I had myself a proper pity party, complete with party hats and streamers.  It really is a shame that only the cats were here to witness it!  Those fifteen minutes were the stuff legends are made of.  Then I had to give myself a time out.  "Self" said I "get it together.  This is not the way we behave." "But I'm sick of everything being a fight. The past two months have been terrible!!  I've had this bad thing happen and this annoying thing happen and this frustrating thing happen  AND this completely ridiculously blown out of proportion  thing happen (bad things expunged from the record to save you from reading all my whining;) and to top it all off I have had a very bad day!! (insert foot stomp here)"  I replied.  (Yes, I had a two part conversation with myself.  Don't worry the funny farm is on my speed dial. A friend and I have decided to coordinate our breakdowns.  This way we can share a room;)  "That's it!  You are in time out.  Have a cup of coffee, eat some breakfast, take a hot shower and watch an episode of I Love Lucy.  Take a minute, get your attitude in line and your sense of humor back!" I snapped at myself.  
So that is just what I did.  I spent an hour getting myself together, putting my big girl panties back on and choosing to change my attitude.  Afterwards, I looked back at my morning and the truth is, this morning was exactly like every school morning here in Skiffland.   It turns out the only real "er" in my morning was that I was attitudey-er.   
Since taking a few minutes to reset my attitude and my sense of humor, my day has gone fine. I just needed to refocus on what is important and take the "er" out of my day.   I hope things are well for you my friends.  As always lots of love-Kristine

Wednesday, August 8, 2012

A Glimpse of Morning

BEEP!!!! BEEP!!!! BEEEEEEEP!!!!  The alarm blared its way past my dreams, into my subconsciousness, bringing me startlingly awake.  "ugh" I mumbled as I rolled over and snuggled deeper into the covers.  Seven minutes later we have a repeat performance of the same show.  I deserve a Tony for longest running show, at least three times a day for 35 years running.  The past 13 years the BEEP!!!! has often been replaced with crying, "MOM!!!!", arguing children, or a blaring video game (you have to keep the show fresh and alive;) but the results are the same.  My bed and I are heartbreakingly parted far to soon, our relationship sharply severed, leaving me in a haze that only clears after my second cup of coffee.  I expect word of my nomination by the Tony awards committee any day now!
This morning I awoke to the all to familiar squawks of the Benny bird intermingled with the relentless beeping of the alarm clock.   "Ugh" I mumble, my vocabulary is very limited first thing in the morning.  "We need a less intrusive alarm clock" my husband says (how he has a word like intrusive ready and available first thing in the morning is a mystery to me; a completely unfair, baffling mystery).  "Benny stop squawking and tell us what's wrong." I croak incoherently. "Benny stop making noise and fighting with your brother first thing in the morning" my husband translates.  Benny comes running into the room, crying and squawking, climbs into bed and begins his dissertation of his woes.  My ears are not really awake enough to translate Benny squawk into English, instead all I hear is my brain beating a constant refrain of "Must have coffee!  Must have coffee! Must have coffee NOW!" (we'll discuss my addiction at another time, thank you very much ;)
I grunt enough platitudes to soothe the Benny Bird enough for the hubby to understand the nature of his distress.  The Benny Bird flies off once again.  I try to snuggle down into the comforter for just a few more, precious, stolen, minutes of sleep.  But it is no use.  The day has begun and there is no going back. I slowly make my way downstairs, encountering two more melting down children on my way.  Paul is ranting and raving over Sam's inaccuracy.  Sam is crying and mad over Paul telling him he is lying because he was not accurate.  I'm not awake enough to sort out the details yet. The universe is not playing fair today.  Three children in meltdown mode BEFORE coffee has been banned by the Geneva Convention and The united Federation of Planets (as any Trekkie will tell you).  I send everyone back to their beds and make coffee.  Silence is golden!!  I make breakfast with little interruption. The boys once again begin to trickle out of their rooms and we start the day again.  Let's hope Wednesday 2.0 has a more successful launch!  

Monday, June 18, 2012

A Glimpse of Auditory Sensitivities

Music has always been very important to both my husband and I.  Hubby was raised in a very musical family and was picking out songs on the piano almost before he could walk.  The same is true for me.  I am not sure how old I was when I sang my first solo in church.  It was definitely sometime in early elementary school.   it was only natural that one of the things that attracted me to my husband was his heart for worship and his musical talent.

When I discovered I was pregnant with our first child, it was only natural that he was surrounded with music from the moment of conception on.  Daddy playing keyboard, me singing, CD's playing, music at church....music, music everywhere.  Once Paul was born he was sickly. He had to nurse every twenty minutes for the first three months of his life.  He would spit up all the contents of his stomach if you fed him any quantity at once and he had a hard time maintaining weight.  So he spent most of his days in my arms being rocked and sang to. as I sang my way past the point of exhaustion and marched straight into delirium.  At three months, Paul could finally stretch his feedings out to every two hours.  Yet, still when I held him he became agitated (If I was rocking him, I was singing....singing was just that much a part of who I was.  I even sang in my sleep as a child.  It drove my sisters CRAZY!!!  My mom said when I moved out of the house I took the music with me).  Then,  I began to notice he would become worked up when I played CD's or had the TV on or when were in church or in the mall.  In fact anywhere there was any amount of noise Paul became completely inconsolable.  The music ,that was such a part of our family, disappeared almost completely.  I felt like someone had cut out a large part of my heart.   We tried to find a church that would work for Paul.  But it never failed the noise would drive Paul to meltdown and we would be forced to walk around with him outside.  We stopped going to church.  We stopped going shopping with him.  The older he got the worse it became.
Enter Jamie. As much as Paul melted down to music, Jamie craved music.  The only way to get Jamie to calm down was for me to sing to him for HOURS.  Now I had one child who melted down when there was any music and one who would only stop melting down with complete immersion in  music.  Our family became split.  I would put Paul in the playroom  while I calmed Jamie down on the other side of the house in his bedroom.  Paul resented Jamie because everything Jamie needed was the opposite of what Paul needed.  Jamie is hypo-sensitive so he craves CONSTANT sensory stimulation.  Paul is hyper sensitive to EVERYTHING (light, texture, commotion, etc) but noise most of all.  
Then Paul started Kindergarten and everything just got worse.  He could not attend assemblies (they were too loud), could not eat in the lunchroom ( too loud), could not attend music class (too loud), could not be in a classroom that was loud.........and the list goes on and on.  You have to understand this is before Paul had been diagnosed with anything.  We were in the beginning stages of having Jamie diagnosed.  We really had no idea what was going on.  As I write this blog, I write with the knowledge of hindsight  but at the time I had no idea about hyper sensory sensitivity or hypo sensory sensitivity.  All I knew, was that my house was being torn apart at the seams.
We were super blessed that Paul was placed (by coincidence) with a teacher who had spent 20 years working in special ed and had won national awards for her work with autistic kids.  She had only that year returned to the general classroom.  She recognized the signs of Asperger's in Paul (side note: sensory sensitivities were not the only things going on with Paul.  You can not diagnose autism or Asperger's only through sensory integration difficulties) and encouraged us to start the process of getting him diagnosed.  I had come across information on Asperger's through my research on autism for Jamie and had begun to suspect both Paul and my husband were on the spectrum.  To make a long story short, they both are indeed on the spectrum.  Their specific diagnosis is gifted Asperger's.  One of these blog posts I will get around to the difficulties, failures and successes we have had in educating a child with these two diagnosis at once (often referred to as twice gifted).  however, that is not the point of this blog post........so back to the story.
Our house has continued in this manner for years, Paul needing one thing, Jamie needing another.  It led to deep resentments in both of them.
Today, as I was in the living room, I over heard Paul SINGING along with Rich Mullins in the office and I teared up.  I could only think of the fact a year ago this NEVER would have happened.  This past year, Paul has begun to really expand his borders and his sensory sensitivities have lessened dramatically.  I'm not sure whether it is just his age, or the fact we removed him from the completely overstimulating environment of public school to home school him, or the fact he has made new friends, or a combination of all three but now my son TURNS ON MUSIC!!  He "sings" (at least attempts something that kind of sounds like singing and a cat caterwauling mixed together. Pavarotti he is not;) and his frustration with  Jamie has lessened greatly.
I have been given back music.  I feel like someone has restored a large part of the heart of our family.  I cannot tell you what a blessing this is.
Friends, I don't know if any of you has faced this particular situation or not.  But I am willing to bet many of you have had to give up something that is a part of the fabric of your soul for one reason for another ( you love to run but a bum knee prevents you, you love to paint but paying the bills is preventing you from pursuing your passion. The list is endless)  Let me encourage you that in time God can restore it to you the same way he has restored music to my home.  Lots of love-Kristine

Sunday, May 27, 2012

A Glimpse of Destruction Done Skiff Style

The sun has barely rubbed the sleep from it's eyes, had it's coffee and started its long work day.  Hubby and I are trying to hold onto those precious few extra minutes of sleep that come on Saturday mornings when you have small children.  7 am and we can not put off getting out of bed any longer.   I stumble down the stairs and start brewing that magic elixir of life and alertness.....coffee.  I turn as I'm filling the coffee pot and almost drop it.  I put the pot down and rub my sleepy eyes, surely my eyes are deceiving me.  I blink once, twice and look again.  This is the sight that greeted my still weary eyes.
Jamie is smiling broadly with a pair of scissors in his hands.  "Look Mom, I made the cat windows!!"
He is so proud of his creation.  I'm struggling between the need to cry and the desire to laugh.  I take the scissors and send Jamie upstairs before I loose it.  Then I call hubby downstairs and together we shake our heads and laugh, after a moment of pure frustration.  This is not the first thing Jamie has "creatively" redesigned and it won't be the last.  We call Jamie down and once again explain to him why he cannot destroy the furniture, even when he thinks its for a good cause.  Jamie really doesn't understand what the big fuss is all about.  After all, the cat needed windows in its favorite hiding place.  We take the scissors and throw them away.  New rule in Skiffdom, scissors are disposable tools.  We buy a pair when we need them and then THROW THEM AWAY!!  Just hide them you suggest.  There is no hiding place in our house that Jamie will not discover.  Believe me we have tried!

This incident took place a few years ago but it was a good example because I had photographic evidence;)  Autism and destructiveness often walk hand in hand.  People have judged us quite harshly for what seems to be undisciplined, unsupervised tsunami children running rampant around our home.  The reality is much more complex.  First and foremost, I must be clear here, not all of our children do this type of damage on a regular basis (well Paul does to his clothing but that's another story).  It is almost entirely all done by Jamie.  Secondly, Jamie really cannot control himself.  He does not get it no matter what discipline is imposed.  He honestly does not connect his actions to consequences (good or bad).  Thirdly, he is not unsupervised.  If anything we keep a pretty tight reign on Jamie because of just this kind of thing.  He is nine years old and he is limited to playing only in our back yard and inside our house unless I am right there within touching distance.  However, he is not my only child and he is FAST.....I mean track star fast.    He can outrun anyone in the family by A LOT.  He literally laps his next fastest brother.
Jamie is not intending destruction.  He is a creative soul and has hypo sensory issues.  This means he does not feel sensation the same way that most of us do :pain, heat, cold, just to name a few.  I have example after example where I have had to rescue him from himself.  Whether it is wandering outside in a short sleeved t-shit and jeans BAREFOOT on a 20 degree day ( I caught him in less than a minute and brought him back in.  All the while he was arguing that it wasn't cold at all.)  or not even crying after tripping on a stairs and splitting open his knee requiring stitches.  He kept pulling open the wound after the stitches were in and playing with it.  He is always searching for sensation.  Just this week he tore a phone book to shreds (yes they do still exist), finger painted with spaghetti sauce on my kitchen floor, finger painted the back of my house with mud, and  poured water on bubble wrap upstairs and jumped on it.  My carpet and I were NOT happy.   Jamie is a great imaginative kid,  he just has no concept of what he is doing.  In his mind, he didn't destroy a phone book he was making confetti and throwing a party for his stuffed animals.  The spaghetti sauce was just the perfect medium to express his inner Van Gough and seriously why not paint the back of the house with mud?!?  All of these things gave him the sensory input that he more than craves, he NEEDS.  We are trying to find ways to give him the sensory outlets he needs but his creativity does not like being limited to our simplistic fixes.  Playdough, art supplies, appropriate digging options, and lots of time in the pool or our garden tub (playing in water is a great sensory option for him) just seem to make him crave more "creatively" artistic sensory options.
We have adapted our lives more than most people can even fathom.  We no longer have dressers because Jamie loves to dump out the contents of the drawers  and build with them.  He then tries to climb the towers he builds, best case scenario he breaks the drawers, worst case scenario he breaks himself (both have happened).   Jamie has literally picked apart (with his fingers) 8 mattresses!!  We have finally found a solution to this one, we have bunk beds where the mattresses sit down inside the frame.  He has had the same mattress for going on two years!!!!!
This is not a post to cry woe is me.  Instead this is an attempt to describe what it is to live with an autistic child who is hypo sensitive.  This is our lives, this is the mundane every day for us.  I know there will be many of you who have the perfect parenting solution for this.  Believe me when I say we've tried it.  This has been going on for nine years.  If it has been suggested, written about, lectured about, or even thought about we have tried it.  I truly am not being arrogant, I'm just trying to express one of the many ways autism affects our daily lives.
My Jamie 
I love my Jamie.  I love his creativity.  I love his passion and his sweetness.  I love his love of all things musical.  I wouldn't trade him for anything, not even for a couch without windows. -Kristine

Monday, May 14, 2012

A Need for Release


When I was 17 years old, I had my first taste of living on my own.  I lived in Ocean City, at a mission, where I was doing missions work for the summer.  My roommate, Amy, and I did everything you can imagine.  We  scrubbed, we cooked, we sang until we had no voice, we were clowns, puppeteers and even counselors.  It was a fabulous summer, one of those sweet moments in life that you capture in the amber of your memory.  You take it out occasionally, hold it up to the light, and really look at it. Then you get a quiet pang around your heart because those sweet moments can't ever be relived.
Because the majority of our ministry happened into the late hours of the night, Amy and I had a tradition of hitting the boardwalk rides right before close.  We would scream away the frustrations of our day on the roller coaster.  Even if we only had a croak of a voice left, it was so therapeutic to just let everything from the day go, in the wildness of the night.  There have been many times over the years, that I have longed for a roller coaster on which to scream away the pain and frustrations of life.
Honestly, this past month I could have used a roller coaster right in my back yard.  So many things have happened, so many daily frustrations are building up, some very deep pains  needing a release.  I want to scream and yell and have no one look at me like I'm crazy......yes I have bedazzled my very own straight jacket, just in case that day should come but I really would prefer a roller coaster ride instead of Bedlam.  
For the sanity of my family, I have spent years learning to hold back my emotions.  I honestly, am not even sure how to let it all out anymore.  My guys on the spectrum need my help to deal with their emotions, they certainly can't handle my feelings and frustrations.  They honestly just can't  process them.  I have friends who love me but I have become so accustomed to being closed off I really have no idea how to just let go in front of them.
So you my readers get to ride the roller coaster of my writing.  It is the best bypass of my brain to my heart. 
So here are the things in my heart.  If they make little sense, please bear with me.

My mind is a jumble of thoughts, that I cannot make sense of
My emotions are a raging sea below mere inches of smooth glass
I chain my heart to my head, I will it to be calm

My life is black and white, my heart longs for color
I want to scream and kick and throw myself down
Instead I sit; tearless, unmoving, untouchable

I strengthen the chains that bind me, I reinforce the glass
I am my own jailer, from me there is no escape
I am slowly willing my heart away.

I'm sorry this isn't my normal, light at the end of the tunnel post but it is what I am feeling tonight.  Tomorrow is another day, hopefully a better one. Lots of love-Kristine





Sunday, March 25, 2012

A Glimpse of the Faint Line

It is past time to start dinner and I realize that lunch has yet to be cleaned up. I decide to enlist some help so that I can kill two birds with one stone. “Paul, I need you to do dishes now.” Paul looks from the computer and grunts. Five minutes later “Paul, I need you to clean the kitchen NOW.” Paul looks up “You said I had to do dishes last time, not clean the kitchen!” Me “Paul they are the same thing.” “They are not the SAME thing, Mom” Paul is getting agitated. I changed my tactics ”Paul, you’re right that was not very specific. Next time I will say ‘ Clean the kitchen’. Since I told you to do dishes first we’ll stick with that this time.” Paul drags his feet into the kitchen and starts unloading the dishwasher. I sigh inwardly and am glad that we did not degrade into a meltdown this time. Five minutes later Paul has unloaded three dishes and is now petting the cat. “Paul, put the cat down, wash your hands and DO the dishes” I’m trying very hard not to sound frustrated but I am frustrated. I just want the dishes done. Paul starts to cry. My husband then decides it is time to switch pitchers, maybe he can get through where I can’t. “Paul stop crying, dishes are a job not something to get emotional about. Now listen to your mother and do the dishes.” Paul begins shuffling his feet and slowly unloading the dishwasher. I’ve seen snails move at a faster pace, seriously;) Hubby tries to give him instruction on how to make this job faster and easier. "If you stack the bowls you can bring them all to the cabinet at once rather than one at a time. Organizing your work space will help you work more efficiently. Paul completely freezes up, will not move and is crying hysterically. We have now past the point of no return. We are now in an autistic meltdown, no dishes will be done by Paul tonight. The barest amount of pressure applied and we have lost an opportunity of instruction and growing. The character issues of disobedience and responsibility can no longer be addressed at this point because during a meltdown my boys are completely shut down and can not hear a thing I say. First priority now becomes managing the melt down.



As a mom of spectrum kids, one of my main struggles is determining the line where character training ends and autism begins. This sounds like it should be quite easy, right? If the kids is rocking in the corner and screaming, it is an autistic meltdown. If he is giving you lip about doing dishes, it is a character issue that needs addressing. Oh, if only it were that simple! the scenario above is something that happened at my house just two days ago. Is there a degree of manipulation involved? Absolutely! Are there some serious character issues that need addressing? Of course! Can I just push through the tantrum and move forward like I would with my non autistic child? No, I can’t because it doesn’t matter HOW we got to the meltdown once we are in one. All that matters once we have crossed that line is de-escalating and protecting my child and those around them.
Let me be clear, Paul does his chores without this kind of response most of the time. However, three things went wrong in the above scenario. Three things that are Paul’s known triggers and had I been more focused on Paul and less on getting the dishes done I would have realized immediately that this was not going to end well. Trigger 1) Paul was hungry. Paul is WAY more likely to melt down over nothing if he is hungry. Keeping my kids blood sugar balanced is a very important part of our daily routine in management of our spectrum kids. Trigger 2) I changed my directions to him mid assignment. I KNOW better than this. Paul NEEDS the specifics and only hears what you say. He does not read between the lines at all. This was guaranteed to start working him up. Trigger 3) Hubby gave Paul NEW information mid -assignment. Paul needs time to process information. If you are going to give him new information you have to do it at a time he is expecting it and is not in the middle of something. Having these three triggers combined is explosive every, single time!
The true key to knowing where that faint line exists is knowing your child and being observant of what is going on around them. As the above story illustrates, I am not always perfect at this. There are times I’m so focused on what I need to do that I lose focus of the important things around me.
Friends, this week I am going to endeavour to spend more time focusing on the important things rather than just the necessary things. The necessary things, such as doing the dishes, do need to be done and are, well, necessary; but the important things, like focusing on my children and their states of being are, not to be redundant, they are important. If I focus my time and attention on these things, I will spend less time and energy fighting to get the necessary things done and my son will not end up standing at the kitchen sink in a complete meltdown.
I pray each of you has a fabulous next week. I love and appreciate each of you.-Kristine

Wednesday, March 14, 2012

A Glimpse of Literature

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


The Highwayman

PART ONE

I

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

II

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

III

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

IV

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

V

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

VI

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



PART TWO

I

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

II

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

III

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

IV

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

V

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

VI

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

VII

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

VIII

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

IX

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

* * * * * *

X

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

XI

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

Saturday, March 10, 2012

Just for Laughs

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


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


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

Saturday, February 18, 2012

A Glimpse of the plague

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


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


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

Saturday, February 4, 2012

My Defense of Neuro-Diversity

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

Sunday, January 29, 2012

A Glimpse of a week in Skiffland



I've spent all weekend trying to compose a masterful, deep and insightful blog for you my loyal readers. However, I must be honest this week was not masterful, neither was it deep, nor was it insightful. This week was actually more of a let's just get through it and hope that everyone is standing and sane at the end of it all kind of weeks. This being said, I decided to give you a glimpse of Skiffland, at its best, through my FaceBook post this past week. Hold on to your hats folks, Crazy has just entered the building.

Sunday

"Sometimes I frustrate myself....like when I drive all the way down to Walmart only to discover I grabbed the wrong card before I left (not that such a thing actually happened to me today, 15 minutes ago or anything;)."
Really when I started the week off this way I should have known I was heading for a rough ride.

Later that night
"When I was a teenager I spent a year and half intensely studying British history, along with the history of Scotland and Ireland.....yes I was a nerd and no I had no life. However on the very rare occasion my misspent youth comes in handy. Like tonight when I watched a movie on the Stone of Destiny and actually could follow the plot line. The moral of the story is if you spend a long period of your youth dedicated to studying the history of other countries (I spent 2 years on Russian history) you may not be able to land a paying job but you too can be an informed movie watcher. The End"
Such self actualization should not come at 1 am....just saying.

Monday

"School days, school days....but first a quick pick of the house. While the cat was away, namely me busy blogging Sat and feeling crummy Sun, the mice of this house sure did play;)"
Oh poor me....I was suffering some serious delusions here. In defense of my delusional state this was PRE coffee.

Later after Women's Bible study
"I laughed until my head hurt tonight. I love when I am able to do that:)"
By the way thanks to the ladies at my Bible study! I think that impression I did of an out of control woman laughing so hard she had tears rolling down her cheeks may have saved me a trip to the funny farm later in the week.

Tuesday
"Today I offer a toast to Tuesday. May you be kinder than your brother Monday, smoother than your brother Wednesday and sweeter than your sister Saturday. I raise my mug (read gallon sized bucket of coffee;) to you"

Never again will I toast another day...just saying.

"Today I am renting out one over emotional ten year old boy with a real flair for the dramatic. He will dazzle and amaze you with such classics of the stage as: "You've Ruined My Life! (watch as I stomp up the stairs)" "I Hate Dishes and I Hate You" "There Is No Food In This House that I Like, I'll Just Go To My Room and Starve to Death" "All My Brothers Annoy Me and So Do You" and my personal favorite "I Don't Need To Do School Because I Don't Want To Have A Job...EVER" Yes for a limited time all these and more can be yours for the low, low price of FREE!!! Hurry now and we will include the bonus material of "My Life Sucks." and "You Love all My Brothers More than Me" at absolutely No Charge!!!"
Yup this about sums up my morning well.

By the end of the day
"They're coming to take me away he-he ho-ho."
They never did show up. all I can figure is they saw footage of me laughing at Monday night Bible study and decided I was too great a risk to them.

Wednesday
I didn't even bother with a morning post after the way Tuesday treated me after my kindly greeting.

Later in the afternoon
"We are taking a break midday here at Skiff Academy. They are cleaning their mess up in the playroom. I am taking a shower and making lunch....seems like this is a great division of the work load to me;)"

Not stated in this sweet little post is the reason we took that midday break was that momma needed a time out. After a full morning of all my guys melting down I was done. Time to refocus. Yay me for taking a shower instead of putting my kids in a box a shipping them to grandma. Yup I deserve a gold star for this.

"If I laugh a little too loudly during The Big Bang Theory, it's only because I can relate a little too much"

I think this says all that needs to be said. If you haven't watched the Big Bang Theory please do and then think how my husband said he doesn't understand why Sheldon is funny because to him Sheldon makes perfect sense.

Thursday
Again no morning toast....I learned a valuable, unforgettable lesson on Tuesday

"Today in Skiff corner I see a pile of clean spoons on the end table next to the sofa. Me: Jamie why are you dragging my spoons all over the house again?
Jamie: But they're new spoons and that makes them interesting.
Me: the reason we have new spoons is because you lost all the old spoons. I'm curious why do you like spoons so much?
Jamie: Because they are shiny and I can see my reflection in them. They make the sound all spoons make and I like the way they are smooth not rough like our other spoons ( our other spoons have a pattern on the handle). I love these glimpses into how my guys mind works. He is pretty cool."


This was a pretty cool moment in my week. I love all the cool lessons in life my kids teach me. Here I only take time to look at a spoon as I'm setting a table with it, eating with it, washing it or putting it away. Yet my son took the time to find beauty in what I barely notice. So many life lessons here.

Later in the day
"Two boys sent to their beds in time out, one boy sent to the bath to chill out, one on the computer for reward time, another on a computer for school time. Could someone please send me to naptime?"

A friend very kindly told me if I pouted well enough and complained loudly enough she would send me to bed for a nap. It was a nice gesture but no ap was in the cards for me.

Friday

3am Friday morning
"One Alex with a stomach bug. Poor little guy"

No commentary necessary. I'll let you use your imaginations here;)

Later in the day
"Alex is fine now. I'm not sure what he had but it was fast moving so I'll take it"

Yay for fast moving tummy bugs. If your going to get one this is the best kind to get.

Saturday

"I've got nothing folks. All my wit is used up. Stop by again tomorrow after I have had time to recharge it"

And that folks was my week as seen through my FaceBook post. I have to say it gives a pretty good picture of what went down here in Skiffland. I hope you got a good laugh out of our escapades. Here's hoping for a better week. Lot's of love-Kristine

Monday, January 16, 2012

Bad Behavior or Disability

The end of semester was finally here!! To celebrate our success we all piled into the Skiffmobile and went to the Natitorium ( a neighboring towns indoor swim and gym facility). For nearly three hours my boys flew down water slides, lounged on the lazy river, had water battles at the water fort and swam in the lap pool. What a gloriously fun and exhausting afternoon. By the time we came home all my boys were wore out. After doing some last minute school revisions the boys and I piled back into the Skiffmobile to go to that glorious place of the golden arches.....well glorious for the kids at least. After this last bit of celebration the boys were headed to bed and I was going to relax with the hubs watching some brainless TV. Ahh, the glorious laziness of it all. But alas the best laid schemes of mice and men go often askew as Robert Burns once penned.
Driving down the road, kids mouths munching happily away, my mouth gabbing even more happily away with my dearest friend I get the first text message, which I promptly ignore.....no one interrupts the precious few adult conversations I get. The phone then beeps with an incoming call, which again I ignore. The phone beeps again and with the sure dread of one who looks into their plans blowing up in their face I answer the call. It's my wonderful hubby, he has a flat and has left his spare tire in the garage (don't ask. I don't anymore;) . So back home I swing to grab a tire and hit the road again with tired, no longer happily eating boys.. to be truthful those happy mouths had started becoming quite whiny, especially the youngest of them all, Benny.
Here I must break to describe my wonderful youngest son for those of you who have not had the pleasure of making his acquaintance. Benny is as cute as a button, as sharp as a whip, as popular as a cheerleader, with a voice as shrill as a fire alarm. The more worked up Benny gets the higher and more piercingly shrill his voice becomes. It is now a well established saying in our small town to tell small whiny children "not to use their Benny voice" and it works. The said children immediately change their voice tone. This gives you a small glimpse into our Benny Bird. Now I have to be clear here. Benny really can't control this as he is getting worked up, when he's not worked up we are always telling him to use his "big boy voice".
Back to the story. So after 20 minutes or so I pull up to my husband who not only had a flat but had it on a toll road, which means there is only a very small shoulder and the traffic is rushing by us at around 80 miles an hour, shaking the van with their speed, the noise a consistent roar (this is maxing out an already over tired, stressed-out van full of spectrum kids, which are working each other up even more, which works them up even more......well you get the picture). So hubby grabs the spare from me only to remember why he had put it in the garage in the first place, it too is flat. To make this already too long story somewhat less long the end result is we were on the side of the road nearly an hour getting it all straightened out. My lovely, rare Benny Bird screamed nearly the entire time. By the time we got home I was ready to scream, which I couldn't do because any emotion from me at this point would only be adding gasoline to the fire.
After every one was sorted out I posted a funny update to my Facebook account. For the sake of accuracy I quote "Dear US government forget waterboarding. Just stick the terrorist in a van with Benny screaming at the top of his lungs for an hour. I swear after 15 minutes you will have any information you want, by thirty minutes they will be begging for merciful death, after an hour they will face a higher powers judgement." To be fair, I did not give the back story only this quick blurb. Those who know me best know that I take life with a huge dose of humor. It keeps me sane on days like the one I just recounted. Some people got it and laughed with me, others offered sincere questions and advice, and others responded with the generic, often heard "If that was my kids I'd just beat his a**" Now I'm used to this kind of judgement, it is the judgement that special needs parents face all the time. I don't even get all that worked up over it anymore. However this is my blog and thus it is my prerogative to address it here. I understand that many people view this as simply bad behavior that is being indulged. I also understand that children need discipline to grow into mature, responsible members of society. Anyone who is actually a part of our lives and sees the way we raise our kids will tell you that we do indeed discipline our children. They do not run around the world unsupervised, spoiled brat, heathens. However, when my son is in the middle of an autistic meltdown I will not just beat his a** however much those around me may wish it. I will give him the space and the the tools that he needs to deescalate. Having older children on the spectrum, I can tell you they will eventually learn to self moderate to a large extent. This takes time and patience, just like everything else with all children. However sometimes with spectrum children it takes a little more time and a little more patience.
Thanks for reading friends. I pray that you all have a fantastic week
Until next time, lots of love-Kristine

Total Pageviews

LinkedIn

Kristine Meier-Skiff. Powered by Blogger.