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."