Behavioral Irony

There are some days when Logan isn't really doing anything out of the ordinary and I just need a break.  We all get like that with our kids, don't we?  Or our spouses?  I love you, but you're driving me nuts.  I love you, but you are jumping on my last nerve.   That kind of thing.  To be fair, a lack of sleep coupled with a massive to-do list contributed to my mood.  So, my husband kept Logan at home with him while I took two of our other kids to run some errands.

Well, something interesting happened while my husband was out with Logan.  One of the things Logan loves to do is shop, and he especially loves home improvement.  He loves bathtubs, shower curtains, sinks, and plumbing parts.  He also, of course, loves vacuum cleaners.  At Lowe's Home Improvement Warehouse, the vacuum cleaners are on their own aisle and they are in a line.  Logan loves this.  They are so organized, in their own little spaces.  Once, at home, he lined all his vacuum cleaners up and proudly displayed them.  He said, "I'm making Lowe's!"  We congratulated him on is hard work and admired each one as if we had never seen it before.  (We had, in fact, memorized each one and might as well have issued a dinner invitation to all of them.  They are that familiar now.)

Anyone who has been in a store like Lowe's knows how big it is.  Several thousand square feet.  Logan and Dad walked all over that store, and soon Logan got tired. There also weren't any siblings around to rival Logan for Dad's attention, so he was very well-behaved.  Dad walked along with Logan and noticed a woman in the store with her son.  This other little boy was very energetic, bouncing around her like a little ping-pong ball.  She finally got exasperated with his behavior and said, "Why can't you be more like that little boy?  See how well-behaved he is?"  And she gestured at Logan.

Yes, I am still laughing about this. And yes, I treasure it, even though I wasn't there when it happened.  But what it made me realize is that we all have our moments, and sometimes we are so busy getting through a difficult situation that we forget to stop and really notice the times that are NOT difficult, even if they don't last very long.  Logan is a challenge to raise.  Every day...and this is not an exaggeration...every single day, there is something that comes up that is some sort of problem, or issue, that needs to be addressed with him. But he is also a wonderful kid and a sweet kid and a very, very affectionate kid with loads of intellect stored in that little noggin of his...and I think we forget sometimes to appreciate those things more than we pooh-pooh all the other stuff.

Of course, when Logan got to the check out counter it was different.  He stood there and noticed the scanner that the checker swipes stuff over in order to get the price.  The scanner was built flat into the counter...you know how those are.  Well, Logan tried to look into the scanner.  Dad pulled him back and said, "Don't look in there!  There's a laser in there!"  And so Logan leaned way over and licked the scanner.

Yes.  He licked it.  Why did he do that?  Did he do it to be funny?  Did he do it to be a smart ass?  Did he do it to gross people out?  Minutes before, he had asked Dad for a lollipop...multiple times.  And Lowe's didn't have any.  Maybe he thought it was a big lollipop-type thingie?  Maybe he just wanted to lick something?  We will never know.  Dad yelled, "Don't lick that!" and got the heck out of dodge.

Hey kid, why can't you be more like my son?  He knows the right way to get attention!  You could learn a thing or two!

As long as he's not crapping in one of their high-end porcelain jobs, I guess we're okay.

Criminy.  Am I blessed, or what?  

Mayday

You know what that picture is.  It's an oxygen mask.  It deploys in front of your face if your plane is going down.

I've mentioned this before.  My father in law always tells me, Take care of yourself.  If your plane was going down, you would put your oxygen mask on first before you put it on your kids, because if you didn't put it on you first, then there would be no one there to take care of the kids!

He's right.

The majority of this summer has been okay.  I've alternated between periods of frantic juggling and total dead time...both of which I hate.  I love a happy medium, and this summer there has been a dearth of happy mediums.  I got an email from a dear friend who I've known for a long time.  She said, Come up here.  I'll take you to get your hair done.  We'll have lunch.

My first thought was, Why is she being so nice to me???


Isn't that awful?  I thought that, and then I thought, What in the world has happened to me, that my mindset has become so cynical?  


So I accepted her invitation and went.  While I was there she told me how she felt after she had her last child.  And I realized for many months, I had been feeling the same way.  Like you are holding your breath.  Like you are running a marathon.  And you forget, almost, what it's like to just walk and breathe like a normal person!

After we had lunch and did the hair thing (and a big thanks to her, she knows who she is)...I felt so...what is the word?  I was so grateful, of course.  But I also realized that I had been ignoring myself.  That I wasn't taking the time to actually take care of myself.  And I think people...not just moms, but dads too...do this.  We become so wrapped up in our children and the drama of everyday life that we forget to stop, and look at ourselves, and ask ourselves, okay, what do you need?  And doing this is not selfish.  It would be selfish if that's what we focused on all the time.  But doing it every now and then is not selfish, it's essential.

So if you are a mom, or a dad, reading this entry...and more than likely, you are....do something for yourself. Do go get your hair done.  Do buy those tickets to see that team you love.  Go get a massage.  Order that book.   Take care of yourself.  Then come back and pick up your kid (or kids) and give them a hug and kiss and feel better.
 

And don't forget to breathe.

Common Courtesy

It's not okay to call someone a nigger, or a faggot.  It's not okay to call someone a wetback, even though here in Texas, I hear that term more often than I would like.  In a lot of schools, children are not allowed to have Christmas or Halloween parties anymore, because someone might get offended.  A little person is no longer a midget.  Need I go on?

So why, if we are so intolerant of these terms, have we become more tolerant of behaviors that push the boundaries of what is acceptable and civilized?

When I was young I was taught that it was rude to stare.  It's rude to stare at people for any reason, and especially rude if that person is in a wheelchair or otherwise incapacitated.  A good friend of mine, over dinner one night, told me about a woman who brought her autistic son into a store.  The boy proceeded to vocally stim...he whooped and made loud noises like a siren.  Everyone in the store, who was in the area, proceeded to stop what they were doing, and stare.

I can't blame people for looking to see where the noise was coming from.  However, after an initial glance, it should have been obvious that the child wasn't doing it on purpose.  Yet people stare.  They've stared at me and Logan, when we're in a store and he does odd things.  How about going about your business, instead, or walking up to that woman and asking if she needs help?  The thought would never enter anyone's mind, in this day and age.

Over the weekend I had dinner with another friend who works in the medical field.  While we were eating lunch a woman approached her and said hello.  The woman proceeded to say that she needed to see my friend soon, and that she was thinking of getting a tummy tuck!  What possesses people to do this?  If you have a doctor...or a lawyer...that you need to see...take my advice!  DON'T approach these people at a restaurant, or a social function, or at church, or any other public place!  They have private lives.  Respect that.  If you need to see them so urgently, call them at WORK, or make an APPOINTMENT like the rest of us!

I read a story in the news a few months ago.  A person was a victim of a hit and run accident.  The person lay on the curb of the street while cars and people passed them by.  This went on for almost half an hour or so before someone finally got help.  COME ON!  Someone is LAYING on the sidewalk.  Obviously, something is wrong.  ASK THEM IF THEY NEED HELP.

We've become a society that turns the other cheek when it comes to helping others and reaching out to others.  We don't want to be involved.  We don't want that ugliness or that complication to touch us.  What would happen if we exercised some common courtesy.  Say hello at the check out counter.  Ask the person how their day was.  Say excuse me if you bump into someone.  Call someone and say, I haven't heard from you in a while.  How have you been?  Offer to help someone who is struggling out of a car or can't open a door.  Simple things.  Common things.  Powerful things.

Church

Today is the Sabbath day.  The seventh day of the week.  The day of worship.  The Lord's day.  The day of rest.  The day you sit on the couch and watch football. The day you go visit grandma.  The day you eat out at some cheap buffet and get food poisoning after because they left the shrimp out too long.  Today is the most stresssful day of my entire week.

Once upon a time, Sundays were a treasure for our family.  We would get out of bed and get all duded up and go to church, eager to see our family and friends and spiritually rejuvenate after a long week of work, child wrangling, chore doin', and errand runnin'.  We would come home and my husband would grill some wonderful meals...my favorite, ever, was the salmon, with the corn on the cob, or something he likes to call an Uber Burger.  The Uber Burger involved a special trip to Central Market the day before and some specific ingredients and it was very Uber.  Or we would make a big spaghetti dinner.

We don't do that much anymore.

Our church services typically run about three hours long.  It begins with a sacrament meeting.  Everyone meets in the chapel, we sing hymns and listen to speakers.  That lasts an hour. After that we have a class.  The kids go to their classes, called "Primary", and the adults go to their Sunday school classes, if they aren't teaching elsewhere. Then the women go to Relief Society and the men go to Priesthood.

Because the chapel is big...it's not huge, mind you...we don't worship in a cathedral...and there are a lot of people talking, and organ music...Logan becomes agitated.  He will often yell or cry out during the quietest times in the service.  This is cause for some amusement, especially when he yells, "I want taco bell!" or "That big kid is not being reverent!"

So, it's really hard for Logan to get through even an hour of this.  We count ourselves lucky and blessed if we can make it all the way through one hour of church.  We have gotten to the point where we bring two cars to church.  If Logan can't handle it, my husband or I will bring him home.  Of course that means one of us misses church, for the most part. I have at least one friend who does not bother to take her autistic daughter to church really, at all...she and her husband take turns.

Well, I especially dreaded today.  My husband is in the military and he was going to be gone this weekend.  I had already missed one or two weeks of church and I was starting to really feel it...so today, I thought, I'll take the kids (all four) and try to get through an hour.

You see, most people just go to church and don't worry about it.  They can sit there and listen, or snooze, or whatever they do at church.  Me?  I want to be there.  I really, really want to be there.  It's just not always possible.

So, my two oldest were tired but they got up anyway with very, very minimal complaints.  Logan was a different story.  He crawled in my bed and pulled the covers over his head.  Whenever I asked him to get up, he would yell, "No!"   All of us were already up and dressed, my feet were squeezed into my heels and I was stuffed into my sausage casing (pantyhose. I hate pantyhose)...and he wouldn't budge.  Nathan, my oldest son, my tween-ager...came into the room and very sweetly tried to talk his brother into getting up.  No dice.  I left the room to get something and when I walked back through the house, there was Nathan.  He had taken a blanket, wrapped up his brother, and carried him to the front room.  I almost burst into tears...it was so tender, and so sweet, and he was so patient and kind to his brother.  We left and throughout the entire service, Nathan held Logan on his lap and whispered to him to keep him calm.  We finally reached a point where Logan got tired of it...and that's when MY brother took over.  He was sitting on the row in front of us, and he reached back, took Logan by the hand, and led him to the seat next to him.  Logan didn't know what to think of that...and because he didn't know what to think he was quiet for the rest of the service.  At that point Nathan reached out and took the baby and held her in his lap.  She had been sitting with her big sister for the most part until then.  Afterwards, Nathan took Logan to his class...and my sister in law and also a good friend kept their eyes on him until he really did have enough and it was time to take him home.

Autism requires sacrifice.  It's a fact.  You sacrifice time and money.  You sacrifice a lifestyle.  You sacrifice dreams and you have to make new ones.  In situations like church or school, it's always a roll of the dice how it's going to go.  It's stressful and you can never approach a situation the way another family would.  You have to make allowances, exceptions, and change your expectations.  You have to plan ahead...a lot....for situations that don't require much thought from "normal" people.  What my children did today-Nathan and Sarah both-I did not ask them to do.  They saw what was needed and they did it.  I am so grateful for what they did and so thankful for them.  If having children is also a roll of the dice...then I got lucky.  As lucky and blessed as one mother could ever possibly be.

Mud-Slinging

Above you will see a picture of my son, Nathan.  He is laying almost on top of Logan.  This was a particularly trying day when they were at their Nana's house.  Logan was really active and Nathan tried to keep  him occupied.  I found out from Nana later that they finally just collapsed on the ground and then she took this picture.

It's hard to be the sibling of an autistic child.  You give up a lot.  When your friends come over for the first time, they realize something is different about your little brother/sister.  Your autistic sibling might say or do strange or even embarrassing or offensive things.  Sometimes you can't have friends over because the addition of a new person into the environment is just too much on a given day.  Your personal belongings will get manhandled and sometimes lost or broken.  There are things you have to deal with that a regular child your age will sometimes never encounter.

Well, it takes its toll.  Today Nathan was playing in the backyard with a friend from down the street.  Logan was in the backyard also.  So was an enormous mud puddle.  I could hear Logan starting to protest and yelling "No" and I walked to the back door and peeked outside.  Nathan was kicking mud on his little brother.  Needless to say, the friend from down the street was sent home and Nathan came inside.

"Why did you do that?" I asked him.  This may seem harsh and strict to you....after all, they are just brothers, and brothers do things like that.  Little boys in general do all kinds of stuff.  But we've talked.  And talked.  About what can agitate Logan, what can tip his moods from great to sour, and we've talked about not provoking.  Hence the question, why did you do that?

"Well, I knew he was going to throw mud on me."

"Did he throw mud on you?"

"Well, I just knew he was going to."

"Answer the question.  Did he actually throw mud on you?"

"Well....no...."

"But you kicked mud on him because you were sure that he was going to do that to you."

"Yes."

Ah.  A preemptive strike. I know you're going to hurt me, so I'm going to hurt you first.  I totally got it.  I even understood it.  And given what Nathan has had to deal with, I couldn't blame him for trying to handle a potential situation.  But.

Remember that movie a few years ago, with Tom Cruise?  It was called "Minority Report".  The premise was that three psychics could foretell the future...they could tell you who was going to commit a murder, or steal something, so the police would come and arrest the potential offender before they actually did anything.  The offender was then placed in a room and forced to watch their would-be crime over and over again.

How often do we do this, to each other?  We decide that someone is going to do something or behave a certain way, and we judge them ahead of time.  We take action before they can.  Is this good, or right?  Is this self-protection?  Or will our actions actually push someone into doing the very thing we are trying to circumvent?

Of course I talked to Nathan and pointed out why he couldn't handle things this way.  As the oldest sibling he always tries to step in and take care of things.  I understand, being an oldest sibling myself.  But I also pointed out that had I not come outside at that moment, Logan may very well have started slinging mud...but only because mud got kicked on him first.  People often rise to the occasion.  Or give you exactly what you expect, and children, autistic or no, are never an exception.

I Done.

When Logan gets really agitated, he gets really loud.

So what, you say.  Most kids get loud.  Kids are noisy.

No.  You don't understand.  I probably need to see an ear doctor.  Seriously.  If you walk to the end of the street...you can hear him. He whoops and hollers.  He screams.  He yodels.  He freakin' ululates, my friends, at supersonic levels.

Well, today, he was doing that.  I can't remember what set him off.  I think he went outside, and there was an issue with a mud puddle.  More on that later.  Anyhow, he got upset and I was having a really hard time calming him down.  Whenever he gets like that, I take him into my bedroom.  I take him in there because the walls are blue and the coverlet is mostly the same shade of blue and the curtains are the same shade of blue, and they are blackout curtains.  I can have him lay down and turn out the lights and then voila!  he's in a low sensory environment.  Did I plan for the room to be all blue?  No.  Given my way, I would have: red.  black.  cream.  And gray.  But that's beside the point.

So he's in there, and he's upset, and he's noisy...and then he starts playing with my hair. (I have really long hair.  It's become a mane.  Something must be done.)  And then he says, "Fix mommy's hair."  By the time we were at that point, I was at my wit's end.  Nothing pushes my buttons like repetitive, high-pitched noises, noises that reach decibel levels previously undiscovered by mankind, noises that I have no control over...and he knows this, which is probably why he does it, at least partly.  But he said "Fix mommy's hair."  I grabbed onto that like a lifeline.  I got my brush and my little son brushed my hair.


Do you have any idea how sweet that was?  He brushed it and brushed it and then he flopped down and said, "I done!"

Logan always says "I done" when he's done with whatever activity he's doing or he's tired of it and can't go anymore.  He said, "I done" and by then he was calm and I hugged him and told him what a great job he did and that made him happy and best of all, the noise had stopped!

There are a lot of days when Logan is difficult to control and it's not his fault.  There are many days when I want to flop down and say, "I done!"  It's true.  Some self-righteous little prig somewhere may read this and think, how can she think  that about her own children???  I've learned not to care what people think, at least for the most part.  I will never be done.  You don't have a Logan in your life, and think of the day he will graduate high school and go on to college and have a life.  You have a Logan in your life, and you just know that life will be a series of moments like getting your hair brushed...like light breaking through the clouds on your darkest days...and you learn to treasure those moments for what they are and wait out the ones that aren't so great.

Locked-In Syndrome

The other day I decided to watch the news.  I don't know why.  I never watch the news.  First of all, it's depressing.  Second of all, I don't have time.  But this time I was watching some sort of news program and it featured a British man named Tony Nicklinson who had been very active in his life.  He suffered a very serious stroke that left him completely paralysed from the neck down.  He communicates using a computer program coupled with blinking and head movement.  He has petitioned the high courts in England to allow a doctor to assist him in ending his life.  He argues that the current law is discriminatory...that other people, who do not share his circumstances, can choose when to end their lives and he cannot.  You can read his story here and watch a news clip:

http://www.guardian.co.uk/society/2012/jun/19/locked-in-syndrome-murder-law


What Nicklinson has is called "locked-in syndrome".  He is, essentially, a prisoner in his own body.  He needs help with every single aspect of his life.  As I read about his story, I felt so sorry for this man...to have been so active once in his life, and to have it suddenly taken away...I cannot begin to fathom it. As I listened to him, I also thought, at least you can communicate.  As soon as I had that thought I shoved it away.  I try to make it a habit not to judge other people anymore.  You can't know what someone's particular situation is like or why they think or do the things they do, and in their own minds, a person's decisions and actions may seem justified at the time.

Can I equate this to Logan, and to autistic people in general?  Some people may say it would be like comparing apples to oranges...the two things are not remotely the same and there is no comparison.  But there are some autistic people who have great intelligence.  They can run, move, climb...pick things up and put things down, create works of art or messes on the floor...but they cannot convey a thought, not the way we do.  When Logan first started going to public school, he was tested.  The school said that they suspected he could do a lot more than he was showing them.  But they had to base their findings on what he was exhibiting and what he was exhibiting was a child who was mentally deficient.  I've observed Logan, at home, when there is not a panel of teachers and diagnosticians watching what he does...and he has sometimes displayed a frightening awareness of certain things.  But he cannot control his vocalizations, and sometimes he can't seem to control his own body. Does this make Logan "locked-in"?  Certainly there are many doors that are closed to him and that will remain closed for the rest of his life.

Do I have locked-in syndrome, as a mother of an autistic child?  When you parent someone like this, there are things you just can't do anymore.  A trip to the local swimming pool, a hike in the state park, a shopping trip at the mall...these are major ordeals.  Why? you ask.  Why does it have to be a major ordeal?  Aren't you making a big deal out of something that isn't?  Why don't you just bring him and see what happens?

I know what happens.  That's why I don't.

Take the swimming pool.  I love to swim.  I love the water.  Given a body of water, especially if it's clear and cool on a hot summer day, I will stay in there for hours and hours.  Logan also loves water.  He loves water so much that he will jump in the water without pausing to consider how deep it is or if someone is trying to swim below the surface.  Autistic children don't have a lot of inhibition when it come to danger, remember?  So we don't go to the pool.  There is no way on God's green earth I can hold on to Logan and a four month old baby at the same time without someone having a near-death experience.  Because the questions that come to my mind are: what if Logan runs away from me?  What will I do with the baby if I have to chase after him? If someone watches the baby, fine...but what if he gets away from me, and I don't get there in time?  What if he jumps off of something he's not supposed to jump off of?  what if what if what if???

Take hiking at the park.  This might be doable.  But then those pesky "what ifs" swarm again...what if he runs away, gets lost, etc.?

Take the mall.  This is probably the worst place I could ever take Logan.  It's big, echo-y and loud.  There are people everywhere.  Lots of stores with lots of textures and smells.  A place loaded with what-ifs and overloaded with sensory nightmares for someone like him.

So do I have locked in syndrome?  There are things I can't do and places I can't go for the most part.  Logan is worth it.  But it does get depressing.  And anyone who says it isn't, is lying.  Or perhaps just trying to stay positive all the time, which is admirable but not practical and certainly not honest.  I miss being able to just leave.  And go somewhere.  Without worrying about it.

We have a chest of drawers in our living room and on the top of it sits "The Game of Life".  At church on Sundays there is a particular person who always comes up to me and says, "Who is winning?"  He sees me struggling with my son.  I don't know if he's amused or sorry for me  or what...but finally, one day, I just stared at him.  I said, "I am always winning."

And I am.

It Makes You Wonder

I have long contended that there is not a link behind vaccinations and autism.  After all, people have received vaccinations for years and years, but autism just seems  to be picking up speed.  However, there is also the contention that autism is actually NOT becoming more and more common...we are simply becoming more aware, and therefore, diagnosis of spectrum disorders is happening more frequently.

Today I read an article on Yahoo!.   You can read the article by following this link:

http://news.yahoo.com/swine-flu-vaccine-may-linked-rare-nerve-disorder-200440063.html

Basically the article relates the findings of one Philippe De Wals of Laval University in Quebec City.  He found that since 2009, of the 4.5 million people who received a vacinnation for H1N1 (swine flu), 25 of them developed Guillain-Barre syndrome within 6  months of getting the vaccine.    According to him, that is about 2 people per 1 million doses.  There were also another 58 people who developed Guillain-Barre who did not receive the vaccine.

Just to clear up any confusion, Guillain-Barre disease is a disease of the central nervous system.  It's an auto-immune disorder, meaning the body's immune system will attack itself.  This leads to muscle weakness, breathing problems, and a host of other complications until death occurs.  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001704/  The preceding website, which cites the ADAM medical encyclopedia, states that "The swine flu vaccination in 1976 may have caused rare cases of Guillain-Barre syndrome. However, the swine flu and the regular flu vaccines used today have not resulted in more cases of the illness."


But what does this all mean?  Vaccines still do more good than harm.  Polio, measles, and whooping cough were practically non-existent in this country due to vaccinations.  Now we are seeing a resurgence of these illnesses because parents are choosing to vaccinate less.  However, the fact that a vaccine may have caused an auto-immune disorder gives me pause.  If a vaccine can be at the root of something like Guillain-Barre, can it also be at the root of spectrum disorders that we are seeing today?


There isn't any real way to know.  Vaccines are a business.  Medicine is a business.  If someone were to come forward with proof that a vaccine did, indeed, cause a once-"normal" child to suddenly deteriorate...can you imagine the repercussions?  Can you say "wide-spread fear and panic"?  Suddenly, NO ONE would vaccinate.  And the companies that produce such vaccinations would suddenly be filing for bankruptcy.


As far as Logan is concerned, whether or not a vaccine caused his autism is a moot point.  He is who he is and this is the hand he's been dealt.  But still, this latest finding makes me wonder...