People In Hell Want Slurpees

My father was a brilliant man.  I always think of him at this time of year.  His birthday is December 4.  He was a brilliant man, a quiet man, and a very dissatisfied man.  He hardly ever complained, but when he did complain, it was about  something he didn't have.  He needed a boat.  Or a bigger house.  He needed more money.  A fancier tv.  A vacation.  A book (sometimes, he forgot and bought two copies of the same one...I confess, I have done this.)  or a faster computer or a different town to live in or a motorcycle...and the list goes on.  He was always convinced that once he had that thing, then everything would be better, and he would be happy.

Today my oldest son came to me in tears.  Logan had spent the morning whooping and keening, and the decibel levels were at times ear piercing.  My oldest was overwhelmed.  He can't stand noise.

"What do you want?" I asked him.  "What would be the magic cure for you?"

"I want someone to find a cure for autism.  I want the noise to stop."

I would be a terrible mother if I told him not to worry, that someone would find a cure and that eventually the noise would stop.  He was asking for normalcy.  I could not give it to him.

"The noise is not going to stop.  And no one is going to find a cure for autism right now, "  I said.  "It's not going to go away. So what do you plan to do about it?"

"I guess I can't do anything."

I touched his head.  "What are you going to do about it in here?  How you deal with this is everything.  Attitude is everything."

Later we went to the store.  I bought just a few essentials.  On the way there I happened to glance at the Wal Mart parking lot.  It was packed.  I went somewhere else.  I thought of all the people in there, rushing around, frantically looking for this thing or that thing because if they didn't find that particular thing, then little Susie or Bobby or whoever was going to be disappointed and upset.  And I thought that was sad.

I could do a whole article on the commercialization of a holiday that is supposed to be dedicated to the birth of a King.  I could go on about the selfishness and materialistic tendencies of the human race in general.  Instead I thought about holes.  Everyone has holes in their lives.  And I think, like my dad, we get fooled into thinking that having a thing will fill that hole for good.  If we can just have this car, or buy our kid that swingset, or own a certain pair of boots (guilty!), then we'll be happy.  The problem is once you fill that hole another one opens up, ready to swallow the next thing you feed it.  At some point, you have to decide that enough is enough, that the things you do have are more than adequate to cover the needs in your life, and that whatever you're feeling...sadness, or anger, depression, bitterness, greed...those things can't be remedied by a thing.  Those things take a special kind of self awareness and spiritual first aid.  Those things take recognition...of whatever is causing that feeling, and then a change of attitude.

I told my son today that happiness is a choice.  So is despair and anger. Some situations and challenges are so difficult to deal with, they cause such emotional upheaval that it takes time to put things back into the proper perspective.  But I would be wasting my time and affecting my children in a negative way if I complained about circumstances beyond my control and went through the day wishing for something I didn't have.  As Daryl Dixon on "The Walking Dead" says, "People in hell want slurpees."  We all want things, and it's okay to want things..it's even okay to be disappointed when we don't get those things....but it's also okay to be happy in spite of the things that are missing from our lives.

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...

Sideshow

So, I've read about this from other "autism" moms and dads, but today it finally happened to me.  I took all of my kids to the store with me  (all four of them...I know...what the?)  Anyhow...we were done.  We were done and it was time to check out (except I checked out a long time ago!)...and Logan did it.  He did the "I'm going to lay down on the floor in the middle of the aisle and you can't make me get up" thing.  For starters, the only reason Logan goes to the store with me is because a) he wants to look at a vacuum cleaner b)he might receive a vacuum cleaner or c) (and this is rare) he really wants to get out of the house.  Today, it was a or b.  We did look at the vacuums.  We said hello to our friends Dyson, Bissell, and Electrolux.  We did not bring one of these friends home with us.  And we made our way to the registers.  Well, Logan got upset, I guess because he didn't get what he wanted or whatever, maybe he was tired...and he laid down in the middle of the main aisle in Wal Mart.

Logan is a very strong child.  Strong for his age, so strong I can barely pull him along when he is resistant.  I marched right over to him, said, "Get up off that floor right now."  Grabbed his hand and pulled him over to the cart, placed his hand on the cart and said, "Don't ever do that again.  Keep your hand on the cart."  And we got our stuff and left.  In the midst of this little melee, my shoe came off, people skirted around us and whispered, and I questioned if indeed there was a purpose for my being on the planet other than to provide amusement for other people.

These things are the not so fun side of autism.  The weird behaviors that cause people to stare or frown or shake their heads at you because you must be some sort of horrible parent if your child is acting that way.  You start to feel...well...like a sideshow.

You know, those carnival sideshows?  There was the bearded lady.  The camel girl. The elephant man.  The man with two you-know-whats.  Sword swallowers and fire breathers and people who nap on a bed of nails and people who throw knives.  How do people behave at sideshows?  They are oddly fascinated by what they're seeing.  It's a feeling of ghastly fascination mixed in with relief that such a fate has befallen someone else and not you.  People are entertained by what they're seeing.  It's a diversion from the normal.  Do they want to look at it all day?  No, they do not.  I can imagine someone staring at the fire-breather,"  Oh wow...I don't know how you do it.  Are you okay? That must hurt! Can I do anything?  Okay, then.  Bye."  I get the same thing from some people.  "Oh, wow.  I don't know how you do it.  You must be so stressed.  Can I do anything?  Are you okay?  Still breathing? Okay, then.  Back to the main show."

You may think I sound bitter.  I'm not..if you hear anything at all, it's frustration.  Every day I hear some sort of complaint from a friend or relative about something.  How their kids annoyed them.  How they don't have enough money.  How work is driving them nuts.  How awful their lives are.  And I think, my gosh.  My gosh, you don't know how to see what you really have.  To such people, I want to take my shoes off and say, "Try them on for a while.  Walk around a bit.  Then we can talk."

Everyone has their own challenges and I think God sends us trials that are uniquely fitted to us and our situations.  He knows what we can handle, and what we can't, and what may be a piece of cake for one person may be the limit for someone else.  For some people, life is one long dance and for someone else, it's just a constant climb.  I beg forgiveness of my friends if they've ever thought I'm callous or uncaring when they've brought their problems to me.  I forget sometimes, what it's like, to be bedeviled by a mundane problem and have that be the extent of my issues.

I will never grow a beard or throw a knife.  I will never breath fire or bend my knees backward like the camel girl.  I will raise four children.  Then I may take a nap.  On a bed of nails or anyplace where I can finally lie down.

We Can't Have Lamps

I have a friend that I recently met through another mutual friend.  She has a child, older than Logan, who is also autistic.  Her mother explained the challenges she and her husband face raising this child...most of it sounded very familiar.  One of the things that came up was the fact that she can't hang pictures on the wall or put a freestanding lamp in a room.  I said, "Yeah, us too."  Reason being, dear readers...our children will knock them off the walls or pull them over.

Now, I'm sure that someday, someone who does not have an autistic child or who doesn't believe in autism (these are probably the same people who don't believe in the Holocaust, either), will say, "Just tell them not to do it.  You need to discipline them."  Heh.  Heh heh heh.  Heh.

It's not that simple, really.  Autistic children are sometimes very single-minded.  They do fixate on objects or ideas...see the entry titled "Autism Brings a Friend".  There are OCD behaviors that couple with autism, there are anxiety disorders, there are a number of things.  When Logan's autism emerged, he started climbing onto the kitchen counter and playing in the kitchen sink.  It didn't matter how many times we pulled him out of there...it could be fifty, one hundred times...he would go right back in there.  And no, spanking him did not work and neither did taking away privileges or favorite toys.  Spanking an autistic child is like turning up the volume on an already blaring radio...it's counter-productive and it doesn't accomplish anything except create more of the same behavior or something worse.  Autistic children do understand privileges...after a lot of repetition.  And Logan didn't have a favorite toy..other than water.

So why is hanging a picture on a wall or having a lamp in the room such a big deal?  I'm sure there are many reasons but one of the major ones is visual stimulation.  I talked before about "stimming"...how autistic children stimulate themselves through their five senses.  One girl made a lot of nonsense noises because, it was found out later, she had no way of blocking the ambient noise in her environment.  It all came into her all at once...and making a lot of loud noise herself gave her one noise to concentrate on.  When an autistic child sees too many things at once...pictures all over the wall, for instance...it's more than they can handle.  There are too many things to look at all at the same time, especially if these are pictures of a person, making an expression.  (The same girl communicated that she never looked anyone in the face because staring at someone's face was like looking at a thousand faces at once...she was that observant of the changes in facial expression and emotion.) As far as a lamp...who knows?  If the child is used to the room looking a certain way, and suddenly, something new is introduced...like a lamp, which, by its nature, commands attention (it's freestanding and gives off light, usually tall and has a wide top)...then perhaps that's why a child would react with agitation and want to knock it down...they are trying to remove the thing that is bothering them.  I have said before...autistic children always do things for a reason.  There is a reason behind the odd behaviors, the strange noises, the aggression and the stimming.  Logan is my personal puzzle.  I will spend a lifetime unlocking all of his reasons...but each time I do...I find a new epiphany and I learn a little more.

Meanwhile...yes...sometimes, we will try to sneak a picture or a lamp into the landscape.  If he doesn't notice, or it doesn't bother him...we'll do it again.  Perhaps by the time our last child goes off to college, the house might look normal?  Baby steps, Bob...baby steps....

They Really Do Grow Up

Next year my oldest son starts middle school.  I've been NOT thinking about it ON PURPOSE.  But, here it is April and we are getting things in the mail from the middle school band, and three days ago I found a note in my son's backpack:  there was to be a meeting for all parents who will have children at the middle school next year. The meeting was for the very next evening.  (Glad I checked his backpack!)

So, I go to this meeting and even though it's for middle school parents, it's being held at the High School Performing Arts Center.  I get there and sign in and get some handouts and a form to fill out for his classes next year, and I sit down in the middle of this huge auditorium, and it's dark and the stage is lit up and the Prinicpal is up there and he starts to talk.

And it hits me.  My son is not a baby anymore.


To my utter horror, I can fill tears pricking my eyes and I sternly tell myself, You are not doing that.  Not here.


But this tidal wave...NO...tsunami...of emotion is just washing over me.  You know how they talk about you get in an accident, and your life flashes before your eyes?  Well, Nathan's life is flashing before my eyes.  This  image of him as a chubby three year old will not go away and I keep thinking, No, no, no, no, NO!  This is not happening, I do NOT have a kid who is about to be in middle school!  He can't be this big, he can't be starting THIS chapter.  This absolutely cannot be happening to me.  But it is.

So I get home.  I call Nathan into my room, I shut the door.  I intend to sit down with him and go over his classes and make sure that it's what he wants to pick.  But instead I burst into tears and I grab him and just hug him and I don't let go.  And I expect him to pull away or just give me a cursory little squeeze or something.  But he doesn't.  He hugs me back and doesn't let go either.  And I said, "I'm sorry....this is stupid mommy stuff...I just realized you're not a baby anymore!"  And instead of laughing at me or making one of his off-the-wall jokes, he keeps hugging me and says, "It's okay."

Yes. He is growing up.  And I am so proud.

World Autism Awareness Day

Today is World Autism Awareness Day.  According to the latest statistics, now 1 in 88 children have the disorder, with the majority of these children being male.

I could write all kinds of things about autism, especially today.  I could write about the need for more education, so that "normal" children understand their peers better.  I could write about the wonderful things our school is doing to help children like my son and things they could implement to improve even more.  I could write about what a long, hard journey it is to raise such a child and I could write about the unexpected joys and pleasures that come from getting to know my son as he slowly progresses in his communication skills and cognizance.

Instead, let me just say that I am so thankful for my son.  There are so many lessons I've learned from him, and so many things that I am still learning through my day to day interactions with him.  I am thankful for the opportunity God has given me to raise such a special spirit...and on those days when I feel like I fall short as a mother, and I look up and say, "Why? Someone else could probably do this much better! Why did you give him to me?"   God has answered, "Because you can."

 

When I Wasn't Looking

Not everything is about autism.

So, my oldest son, Nathan?  He weighed 3 pounds when we brought him home from the hospital.  Yeah, he was early..by about six weeks.  He spent some time in the NICU (neontal ICU) and had an IV and breathing tubes and all that. The thing was, he kept pulling the breathing tubes out.  Over and over.  Finally the doctor said, Fine...let's see how he does without them.  And he breathed.  On his own.  Such a determined little spirit in such a tiny body.

He thrived.  When he was a toddler he was a sturdy little boy, with giant blue eyes and cute little cheeks.  Everywhere I went, women would flock around him and say, "Hello cutie" or "Hello handsome" and make a big deal about him.  You love all of your children, as a mother.  The first is a little different, just because that one is your first...the guinea pig, the trial by fire.

So the other day Nathan comes to me and he says,  Mom, I need some deoderant.

What??? You don't need any deoderant! I screech in my head.  You're like, three!!

But no. He isn't three.  He's eleven, and he'll be twelve in October.  Girls are already sending their friends to him, asking if he likes so and so, he's already starting to hang with his friends in the neighborhood on the weekends more than he's spending time at home.  When I wasn't looking, he grew up a little, and it's only going to go by faster and faster until one day, he'll be calling me:  Mom, I'm coming over this weekend.  I want you to meet someone.  God help me.

But you know what?  I love it.  It IS bittersweet, watching this baby turn into a young man and knowing that I will never have that time back.  But, it would be futile for me to try to preserve those babyish tendencies in him.  It would do more harm than good for me to try and keep him tethered close to me, clinging to the last vestiges of this little boy when this brilliant young man is ready to emerge.  I love watching him grow up.  I love watching the person he is going to become.

But, I'll tell you.  At night, when he's asleep...I tiptoe into his room.  I watch the rise and fall of his chest to make sure he's breathing,  for crying out loud. I smooth back his hair and sometimes, if he's very, very asleep, I give him a kiss.  And I whisper, Mommy loves you.  And if I'm very, very lucky, sometimes, in a sleepy voice, that sounds an awful lot like the little boy he is leaving behind, he will whisper back, "I love you too, mama."

People Live Here

When I first got married and we got our first house, I had a really specific idea of what the house should look like.  It had to have this wallpaper and that shade of paint, and the furniture had to be arranged this certain way.  These particular pictures had to be on the wall and I was never happy, or satisfied, because I always saw room for improvement.

I can honestly say I have lost that point of view.  Completely.  When we moved to the house we're in now, it was stuck in a mid-70's time warp.  The rooms were all closed off from each other, there was paneling lining the walls of the family room, and the carpet was, to put it delicately, freakin' nasty.  I had Nathan and Sarah when we moved in here and Logan was just a baby...his autism had not begun to emerge yet.  I can say that the biggest things we did were put a fresh coat of paint in some rooms, replace the carpet with bamboo due to Nathan's allergies, and knock down a wall between the family room and dining room.  I removed part of the paneling (and now I wish I hadn't), and then things sort of creaked to a standstill.  Logan grew.  His autism emerged.  We were caught up in everything that life threw at us...figuring out what was wrong with our youngest son, parenting all three kids...we were busy.  I slowly let go of the need to have coordinating curtains and throw pillows.  I tolerated the half-finished walls in the family room.  It just wasn't a priority anymore.

The other thing I struggled with was just keeping the house clean.  I thrive on order. When the housework goes downhill, my mood goes with it.  My children were like three little Tasmanian devils, whirling through the day, leaving toys and candy wrappers in their wake.  Clutter piled up.  Dirty dishes and rank laundry seemed to breed out of control and my frustration grew.

Until.

Until one day when my friend Caroline came over for a visit. Caroline...I've mentioned her before.  She lives around the corner from me and she is an honest to gosh child of the 60's.  I love her.  She's sassy and funny and cuts through BS like a katana through butter.  She sat in my living room and we talked about whatever...I don't remember now.  What I do remember is complaining to her that I was stressed, and apologizing for the house being in a mess. I also remember her looking at me like I had lost all my marbles:

"Don't apologize for that!" she said.

"Well, it's really messy,"  I said.

"Who cares?  Listen, this is just how it is!  You're busy!  You've got kids!  Hell, people LIVE here!!"

Oh.  People live here??  You mean I am not trapped in a magazine spread, where every surface has to be kept free of dust, where dishes are meant to be admired and not eaten off of, where the sofa and loveseat and even the gosh darn curtains had better be crisp and clean and smell like roses??

I know, it's stupid. Of course, it's not a magazine spread.  But I had had that mind-set for so long.  That everything had to be perfect.  Listening to her say that, I felt this weight just lift off of me.  And I learned to forgive myself for one more human thing I was doing...trying to raise three kids, one of them a very needy child, and keep things as normal as possible at the same time.

Now we have a baby in the house.  And the clutter and the laundry are piling up again...because Miss Abby, my newest little one...she demands attention.  She likes to be held.  She likes to be paid attention to.  Who doesn't?  So.  I look at the random things scattered and stacked throughout the house...papers and laundry and books and t-shirts.  Empty cups, a package of cookies.  Shoes, not on the shoe rack.  Candy wrappers and random doo-dads.  Our lives, strewn throughout the house in all their glory.  I look at these things and my bad self, the one who likes to give me a hard time and tell me I'm not doing a great job...she stands there with her hands on her hips and says, "What are you doing?"  And I glance at all these things on the floor and the countertops, these things that can wait another day, they aren't going anywhere, and then I smile.  "I'm living, baby.  We all are."

Sometimes You Will Want to Craigslist Them

So, of course you may have noticed that some time has passed since my last post.  Well....quick rundown...our family has increased by one.  Yes, we had a baby, and she is beautiful.  She is well, we are all well, and that, in and of itself, is a blessing.  More on that later.

When I started this blog, it was with the intention of providing a completely unvarnished look at what life is like, raising an autistic child.  I've spoken with other parents, and the relief on their faces when we compare experiences is priceless and also heartbreaking:  Oh, your son does that too??  I thought it was just us!  It's almost as if they are saying, Oh, thank God, we thought we were strange and different.  We thought no one could possibly understand!


So, trying to stay true to that original intention of being honest and providing a snapshot of life with an autistic child, I will now talk about something that parents don't really want to mention:  Sometimes, it really is almost too much.  Sometimes, you feel like you've had enough and that you can't take it anymore.  You wonder, really, if your hair can turn any grayer, if perhaps, YOU need to go to the doctor and get a Xanax, and the question WILL enter your brain, Can we put him on Craigslist?

Seriously, I would never put my son on Craigslist.  I love my son. I've written at length about his sweet nature, his progress, the joy of discovering his blossoming personality.  But I would be lying if I didn't admit that we do have those days, when we forget all of that, because he is simply out of control.

Now, autistic children always do things for a reason. The seemingly random noises they make, the odd behaviors and actions that don't make sense in the "normal" world...there is a reason why that child is doing that.  My husband, just this morning (actually it may have been last night...I have no idea.  Days and nights kind of blur together when you have a new baby!) told me about an autistic girl who learned how to type on a keyboard.  In doing that, her parents discovered that A)she was not mentally retarded and B)she made loud noises to drown out all the other noise that was entering her head...in other words, it gave her just ONE noise to focus on instead of having a whole plethora of sound competing for her attention.  That being said, yes...there are some days when I want to look Logan in the eye and say, "For God's sake.  Please.  Please be quiet.  Please don't say anything.  Please don't yell.  Please STOP MAKING THAT NOISE/SAYING THAT PHRASE/BANGING THAT THING OVER AND OVER AGAIN!!!!"

It doesn't work, of course.  I've discovered, through painful trial and error, that trying to get Logan to stop that particular brand of stimming is counterproductive.  It agitates him, to have his "noise" taken away.  He thinks he is being punished, he screams that he will be good, he threatens to "get" his big sister...and it escalates into an episode of difficult behavior that takes forever to calm down.  In the end, it's easier to let him make noise, say the same phrases over and over and most of the time, bang whatever the heck he is banging on the floor.  And yes, there have been many times, when I wanted to pull out a suitcase and head for the hills just for a day or a weekend, and yes, there have been times when the noise has given me a migraine, and NO, it does NOT make me a bad mother that I feel this way!  Why?  Because,  good people..I am human.  I think for a  lot of parents, especially parents of special needs children...they feel like they can't talk about this issue or admit to these kinds of feelings.  Perhaps they feel it makes them less of a parent, or it reflects badly on them.  We're supposed to be ever-tolerant and patient with our special kiddos, right?  We're supposed to have a well-spring of goodness and love, a never ending supply of gentle good spirits, even in the face of such trying behavior...right?

Wrong.

I am here to dispel that myth...because it IS a myth.  I am sure that somewhere there are parents like that.  I am sure that they are a rare breed.  Where ever they are, I applaud them, and if I ever meet them, I want their autograph.  But I am not speaking to them right now.  I am speaking to the mom who picks up her kid from school every day, who watches her son try to hurt himself when he gets too agitated.  I am speaking to the dad who clenches his jaw shut tight to keep himself from screaming in frustration.  I am speaking to parents everywhere, who have endured the headaches that come from vocal stimming...who have installed a lock on every door and window and still worry that it's not enough to keep their autistic child from escaping into the street...I am speaking to those parents, who, exhausted and heartbroken from dealing with a particularly trying bout of frustrating behavior, break down in tears and question why the good Lord gave this child to them, because they don't feel adequate enough to rise to the challenge of raising such a child, who cry because this is not what they planned on, having this kind of child...but they keep going anyway, because nobody..and I mean nobody...will ever love or understand that child as well as them.  These are the parents I am talking to and I am telling them...you have a day where you want to run screaming into the night, you want to pack a bag and escape for a day, you want to give up and just stop because you feel like you just can't go anymore? I'm telling them, I'm telling you...it's okay.  It's not wrong to feel that way.  You're not the only one.  And I want to say I admire you, because I know that after you cry, or let those angry feelings burn through you...I admire you because I know that you will pick yourself up, and go forward, because that's what parents do.

So...how do I deal with all the noise?  Because with Logan, that has become the main thing that is the most trying in our lives.  The constant noise.  Sometimes, if it becomes too much or gets too loud, I send him to bed.  He doesn't stay in bed.  That's not the point. The point is that we took an action in response to a behavior that we viewed as negative.  More often than not, this will calm him down once he realizes, Crap, mom and dad are serious...I better tone it down.  A smidge.  Sometimes, I mimic him.  He hates  it.  If he's making a particular noise or saying a particular phrase...I say it back.  Depending on his mood, he thinks this is funny or it really pisses him off.  Either way, it distracts him from doing it.  And then there's always the old "redirecting" gambit...trying to distract him with something else so he'll forget about what he was doing.  We use that the least.  And then, when all else has failed and he just needs to make noise and we can't do anything about it...I ignore it.  It's hard to do.  Especially when he gets so loud I can't hear what my husband is saying to me when he's standing right in front of me...but I'm getting better at it.  We all have ways that we cope.  And my hair?  It's not completely gray.  Yet.