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:
                     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: .  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

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