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 


Wednesday, October 3, 2012

A Glimpse of Being Fat

Over past few months I have remained silent as a disturbing trend infiltrated the Christian community where I live.  I have stayed silent out of deference to people whom I respected. I have stayed silent out of concern of bruising others feelings. I have stayed silent because I felt like the last person who should speak on this and I have stayed silent out of fear of losing relationships.
Today I was shaken out of my silence.  My husband posted a link to the four minute response Jennifer Livingston, a  news anchor for a local television station in Wisconsin, made to a viewer who sent a demeaning email accusing her of being a bad role model to young women because she is too fat.  Her response was eloquent and well stated.  I encourage you to look her up and watch it.  It is worth the watch.
 Before I go further, let me say I am over weight.  I know this, I do not pretend that it is not an issue.  To be clear before we continue, I am fat and admit that this is a problem that I struggle with every single day.
This is a deeply personal and hurtful battle that I have fought for most of my life.  I am used to being judged immediately by people when they first meet me by my size.  All my years growing up I had family members make snide comments, "helpful" suggestions, and devaluing statements about me and about my weight.  I have had strangers do the same thing without knowing the first thing about me.  I have had my value in eyes of others, and if I am honest, even in my own eyes, change depending on what the scale has said.  When I was thin my value within my family went up immediately.  People were quick to tell me how glad they were that I was no longer hiding my beauty under so much fat.  If my weight increased then everything and anything bad that happened was because I was too fat; from falling down the stairs and nearly losing my babies to the fact my children have autism...all of it was my fault because I was fat.  I am used to being judged not on who I am but on what the scale says.  For years, I allowed this fact to nearly crush me.
The one place where I felt accepted and loved unconditionally was my church.  I knew without a shadow of a doubt that God loved and accepted me no matter what my size, the color of my skin, how well I did on a test or how much money was in my bank account.  I had people in my church who never made me feel out of place or rejected.  My Pastor only ever displayed to me that God loved me unconditionally. In fact, my Pastor only ever displayed that love to anyone and everyone who walked through the doors to our church.  It did not matter if a person came in disabled, or of a different color, or from a different country, if they came in rich or dirt poor, if they smelled or if they were flat out drunk; my Pastor and the people in my church only ever showed them love and respect.    They did not do this because they were perfect or because they had some special gift.  They did this because that is what Christ has called us to do; to love the unlovable, to do unto the least of these.
Is it important to be fit and healthy? Yes.  Is it important to take care of the bodies that God has given us? Absolutely.  Could I do a better job in these areas? For sure.  
Should I feel out of place in Christ's church because I am not there yet? NO!!!  
I have seen a change in the way we relate to others in the church.  Daily I have friends who only know me from a church setting trying to sell me diet products.  They are excited to share this product that has changed their lives with anyone and everyone in their path.  What I don't think they realize is that in their zeal and excitement they are making some people feel that they are unacceptable the way they are.  That even in church and around Christians they cannot be loved or accepted based upon their appearance.  Is there anything wrong with these diet product in and of themselves? No.  Am I upset because others are finding them useful? No, actually I am excited that they are achieving their goals.  However, Christ did not call us to make people thin or fit.  Christ did not call us to transform lives by the sharing of our dietary supplements.  Christ gave us one simple commission.  Christ has called us to go out and make disciples of all men.  The end, that's it.  When our churches and Christian communities stop seeing this as the goal then we are losing sight of what is important.  
Dear friends, I know I probably have offended some of you by this post.  I am very sorry that was not my intention, at all.  However, I felt very strongly that this needed to be said.  If you are one who is in my shoes, who feels unlovable because of the way you look or how you have performed know that you are loved.    Please know that God's love for you is not dependent upon anything you do, on how well you talk, or what you look like.  God's love is not based on anything you can do or be.  God loves you because you are His creation.  God loves you inexplicably and completely.  I will be praying that you will feel His love tonight. -Kristine


Wednesday, September 26, 2012

The Road Undiscovered-a micro blog

The morning sun is bright, reflecting off the road in front of me.  I squint my eyes against the glare and peer at the endless black ribbon that stretches before me.  It is a beautiful Texas fall day and I find it enervating.  I just want to drive.  I don't want to go any place in particular; I long to go, explore, expand my horizons.  East or west? North or South?  It doesn't really matter.  I want to spread a giant road map before me, close my eyes and randomly put my finger on a spot and just go.
I'm not restless by nature, quite the opposite in fact.  But today is just so beautiful, open and unspoken for.  It begs to be more than just another in a long line of errand filled, task consumed days, seemingly checked off the calendar before they begin.  In this moment, I remember that my childhood was filled with days like this, days of promise and possibility. When did the magic of each dawning day get lost in the minutia of daily life?  I don't know. Somewhere between my teen years and college would be my guess.  We exchange dreams and adventure for routine and stability when we cross the threshold of adulthood.  This is a necessary and expected exchange but for today I glimpse what morning was oh so long ago.
I pull into my driveway, the adult in me has commitments to attend to today but I am grateful for my glimpse of the endless, undiscovered road this morning.  Every day I want to awake with that same feeling of expectation and promise.  One day soon I will make the time to take the road not yet traveled, with all it's undiscovered treasures.  

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

Tuesday, September 11, 2012

A Glimpse of the Surreal

The Road Not Taken
by: Robert Frost
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.  


There are times in life that can only be described as surreal.  This past month has been one of those times in Skiffland.  We went ,in a few days time, from having our feet firmly planted on one path  to, in the blink of an eye, having that path completely disappear before us.  Now, we have to figure out where God is leading us as a family.  To be clear, nothing horrible or terrible is going on.  We are just at a bit of a stop gap right now.  Between a personal situation that affected our family's general direction and a health condition that has flared for my husband, we are praying that God will lead us to the new path he has for us.  Personally, this has been a difficult month.  I don't really like change to begin with, and I particularly don't like change when it comes with no warning and is forced upon me.  I need a little time to get used to the idea, dip my toes in ,if you will, before I am completely submerged.  However, it is in these times that I am reminded of God's presence all the more.  I know that even when things seem discombobulated and out of control to me, God has it all in complete control.  I see more clearly with each passing day the way God uses the unforeseen to draw us closer to him and closer together as a family.  
 God has used the situations of the past month to deal with some deep hurts from my past that I thought were long gone, some of which I had never even admitted to.  To be completely honest, I am not comfortable yet with these things.  I feel raw and exposed.  Part of me would much rather go back to the time where I covered up the pain of abuse with walls of denial and toughness.  But I know that in letting God expose the painful things in my heart, I am allowing Him to heal them and to use them to minister to others who have been through similar situations.  The healing process is painful but it is also freeing.
 My respect for my husband has grown so much deeper this past month.  I have seen him stand up for truth and lead when it would have been easier and more convenient to ignore the issues at hand.  I have seen him push himself physically to provide for our family when there are days that just getting his legs under him is a great effort.  I am blessed to have a man of God who takes both his spiritual and physical responsibilities to his family seriously.
Yes, God uses all things for His glory, even the tough things.  I do not know what exactly He is doing through all this and I certainly don't know exactly where He is leading us but I do know whatever and wherever that is I am excited to see it.  

Thursday, September 6, 2012

Singing, Dancing and Rejoicing

 Let everyone break forth in singing,dancing and rejoicing!!!  The Skiff Boys have returned to public school!!  Seriously, I feel like a million and one pounds have been lifted from my shoulders!  

I have to give a huge thank you to the middle school here in our small town.   Paul was dead set against going back to public school.  We thought long and hard about continuing to home school him because he took so well to it.   In the end, we felt it was important that he at least try to return to school for the social aspects and to be thoroughly reintegrated before high school (I never intended to home school for high school).  I brought Paul to the meet the teacher event at the school a few days before the start of school.  Paul had an absolute autistic meltdown not five minutes after we arrived.  He was crying, flapping his arms and refusing to look at anyone.  We waited to speak to the Guidance Counselor in the hallway for a good twenty minutes, with each ticking minute Paul became more worked up and I seriously considered just withdrawing him then and there.  Finally, it was our turn to sit down and talk to the counselor, for the purposes of this blog we will call her Mrs. Marvelous;)  I introduced us as we sat down, Paul was in no condition to talk at all.  Mrs Marvelous knew exactly what to do.  She didn't try to engage Paul, instead she closed her office door so it was quiet and continued a normal conversation with me.  This allowed  Paul the space he needed to calm down.  After he was calm, she asked him how she could help him if ever needed to calm down again, what were the specific things that would help him, did he mind being touched on the shoulder (when Paul said he preferred not being touched, she was not offended instead she made a note of it).   She then asked him what his interest were and really listened to him, even while he monologued about cats ( this really meant a lot to Paul).   She then asked Paul to give her one day to rework his schedule and to come back for a private tour before he decided that public school wasn't for him.  
We went home and Paul was still skeptical but much more calm.  The next day Mrs Marvelous phoned me. She had reworked Paul's schedule so that he had the classes he liked/ needed.  She even made it so that he could have gym class with a friend who isn't even in his same grade level!!!  Mrs Marvelous then told me that she and the principal had spoken and they both felt that it may be better for Paul to start a day later than the other kids so that he could avoid the first day of school chaos.  I had thought about this very thing but hadn't dared asked, fearing it would be impossible!!!!  Paul's attitude changed in five minutes from being against going back to school to being super excited to be starting school!!!  Anyone who knows Paul will tell you this kind of an attitude change is a miracle in and of itself.  
  Since second grade getting Paul to school has required an iron will, more than once I have carried him into the school mid meltdown.  I actually would call his teachers and ask how he was doing before I would go grocery shopping 15 miles from our house.  I didn't want to get halfway through grocery shopping only to have to rush back to the school because I was called to the school to calm him down or work with him.  This happened several days a week more often than not.  That is how stressed school has made him in the past.  Now Paul awakes excited to attend school. Don't get me wrong,  there have been few bumps that needed to be ironed out in his schedule, but Paul adjusted to the changes and still looks forward to school every day.  I cannot begin to express what a huge deal this is in our lives!  Seeing him smile as he walks into the school building is worth all the stress it has taken us to get to this point.   Thank you Mrs Marvelous and all the other amazing teachers and staff who have made this transition for Paul such a positive one. 

Thank you my friends who stayed with me on this journey and encouraged me.  Each of you has brought a unique perspective into my life.  Please know as always I appreciate each and every one of you.  Lots of love-Kristine

Tuesday, August 14, 2012

A Glimpse of Miss Mary (a micro blog)

Paul made butterscotch pudding at lunch time. I took a bite and was instantly 6 years old and sitting in Miss Mary's tiny living room in WV. I would go visit her almost daily because she was all alone and it made me sad. She always had a bowl full of butterscotch candies and a fresh package of Newport cigarettes on her desk. She gave me the butterscotch candy and she got the Newports. We would sit and watch TV ( a rare treat for me). I never knew if she was 62 or 102 but she was my friend. I moved back to WV temporarily so I could care for my great grandmother when I was ten. I would visit her when I had a chance. That was the last time I saw her. It's funny how our brains work. I haven't thought about Miss Mary in years, yet one bite of butterscotch pudding and I remember every detail.

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