Gifts of Autism

I never could have imagined that Autism would give my son gifts.  I didn't want to associate positive things with this hated word.  But, my son wouldn't be who he was if he didn't have it.  He wouldn't have some of the gifts that he has without it, so who am I to wish it changed.

My son is nine years old, heading rapidly to that huge double digit stage.  Most nine year old boys that I know are blood and guts and gore and grossness.  They are looking for snakes to scare someone with, rough and tumble.

Autism has gifted my son with a sensitivity that is rare in children.  He sometimes makes me see the world through a different set of eyes.

Today the boys and I spent most of the day today going back and forth from the "old" home place getting things from the yard.  When we went into the garage to gather a few left behind things, I picked up a box and began screaming.  Inside the box was a baby mouse.  I despise mice.  I grew up in a very poor home, and mice were ALWAYS in my house.  Mice seem to have an affection for me that I have never understood.  Once I woke up with a mouse sitting on my arm.  Another time one fell in love with me and would chase me all over the house and crawled up my leg.  Maybe it is all the cheese that I eat.  No lie!  Ask my family.  My brother finally had to take a broom to it when it chased me up a chair one day and then sat there staring at me.

Anyway, I digress.  So, I pick up the box and am trying to figure out what to do with it.  It has some of my books in it and some soccer shirts.  I pull the shirt up out of the box, and to my absolute HORROR find THREE more baby mice.  I am distraught.  Jackson is entranced.  They are young.  They don't even have their eyes open.  All I can see is ick and gross and MOUSE.  Jackson begins oooing and cooing all over them.  He asks if he can pet them.  He comments on how tiny they are, and how their momma must be missing them.  He asks if he can have them as pets.  I squawk out a NO.

He talks to them as if they are the sweetest little things in the world.  He reaches in and with the tip of his finger pets one of them and it squeaks.  He talks about how they must be afraid because of the noises that they are making.  He tells me that we must place the box back in the floor of the garage so that the momma can find her babies.

My heart began to hurt for the babies and their distraught momma.  As we get back into the truck to leave, he comments about how he will miss the little mice, and hopes that they are okay.

Who looks at a mouse and sees innocence and beauty?  I certainly never did, before today.

What is Autism?

It's been a while since I could post.  We have moved recently, and it has been a nightmare.  For any family moving can be stressful to the max.  For a family with an autistic child, it's somewhere south of you know where. ;)

We began the process months ago, putting our place up for sale, explaining to J that this is what was happening. Preparation seems to work best with him.  Finally, the place sold.  We were keeping our trailer, in the hopes that being in the same home would soften the blow for him.  Then, one day the man showed up at the house to begin cutting down trees.  J FLIPPED.  He could not understand why this man was cutting down trees.  It was NOT his place.  Then we actually had to move in with my husband's parents for a couple of weeks until we could get things moved over.  The complete change in routine (and lack of routine for that matter) led to disaster.  He was going to bed two hours later than normal in a different house, and in a different shower every morning, etc.  His teacher was emailing me about what an awful week he had had.  He had gone backwards, she noticed.  We also noticed at home that he was having more crying jags and meltdowns.

We are now back in our house.  I am hopeful that this will set his routine back in motion, and will enable him to get back to his normal.

What is autism exactly?  Can anyone definitely answer that question?  A link to an article can quickly become a hotly debated topic.  Is it cause by a vaccine?  Is it genetic?  Can it be cured?  So many questions, with no real answers.

I am going to go out on a limb here, and say what I believe.  Now, of course, that doesn't make it the gospel. It doesn't make it true.  It doesn't even make it logical.  It's just my experience with life.  I am pretty sure that autism is genetic.  A blog that I follow talked about how hard it is for many parents of autistics to advocate for their children, because many of them display autistic traits themselves.  That has really set me to thinking for some time.  Even before that, I had my suspicions that this was something that had been passed down through the generations.

For years my brother has been what people have always called "odd, not right, different, weird."  He's always been very unemotional.  He can't process things.  He had tons of ear infections as a child.  He was and still is a loner.  I could go on and on all day about traits that he has that I guarantee would label him autistic.  No one has ever been able to figure him out, but I have a suspicion that I know.  He's not the only one that I could point out these behaviors in, but he's certainly the strongest.

I also don't think that there is any ONE thing that triggers autism.  Some parents feel that the MMR vaccine triggered it in their child.  I think that J's extremely traumatic birth triggered it in him.  He's been this way his entire life.  Nothing seemed to "trigger" him at any age.  He's just always been that way.  I think that it's something in their DNA or their brain that is waiting for something to trigger it.  I think that trigger can be just about anything.  Because I believe this, I don't believe that we will ever find out everything about it.  I don't believe that we will ever cure it.  I do believe as more environmental factors and other things impact our children, the rates will continue to skyrocket.

I had a frustrating incident today. I won't talk much about it here, because I don't want to offend anyone, but it frustrates me to NO end that there are some people that look at my child and see crying screaming brat/baby who can't handle the situation, and look at another child with a visible disability and have a completely different perception.  It's not that he's being a brat, it's not that he's not trying.  It's not bad parenting.  It's not that we aren't trying.  It makes me feel very defeated.

I constantly look for the positive in this situation.  I used to spend a lot of time thinking, why?  Why my child?  Why my family?  Why?  What did we do?  But those are more unanswerable questions.  Why any child?  Why any family?  Why?  What did anyone do?  I can't dwell on that.  This quote came to me, and it fits perfectly.  "It's taken me all my life to understand that it is not necessary to understand everything."  Rene Coty

I know my posts may seem pretty down a lot, and I apologize for that.  I have determined to end every post with a positive, because my son is a great kid.

I truly believe that J is destined for great things.  He seems to have a special affinity for young children.  Every time he sees a young child or an infant he becomes determined to do everything in his power to make them smile and laugh.  As I was standing in the grocery store today, I turned around to find J in the next aisle over, doing everything in his power to make a little girl in the cart smile.  He then turned to me to show off that she was indeed laughing.  THAT is a gift.  I see so many bright possibilities for him.

My heart hurts

I don't want to be overly dramatic, but my heart literally feels like it hurts sometimes when it comes to J.  Tonight we had our first baseball practice of the season, and it was rough.  He did a lot of crying, whining, and fighting with the other kids.  I tried talking to him afterward, and he melted down.  Then he sat in the car and cried the whole way home that he has no friends.  He just doesn't understand how to make friends.  His coaches did an amazing job, I am so blessed that they were so kind to him.

I have so many fears.  Will he reach a point where he stops maturing, and that's the stage that he's at?  Are we going to get to the point where I have to pull him out of sports because he becomes more of a detriment to the team and the other kids than he is learning?

Every part of my soul aches for him.  The kids don't like him.  He knows it.  He just can't figure out why, and how to fix it, and he is suffering.  I can't fix it.  I can't explain to him that he turns the kids off with his behaviors, because he can't understand why the behaviors are wrong.  He doesn't understand friendship.

Will he ever?  I don't want him to be alone and sad.

Pedal, pedal!!!

Did you ever realize just how much coordination goes into riding a bike?  You start out very young with training wheels, you hop on, and eventually you move to no training wheels.  Well, it's not been so easy here.  First off, the place that we have lived has been almost completely and fully wooded, and what isn't is very hilly.  The boys haven't had a lot of flat good places to ride on. With J's complete lack of coordination, having a completely flat place and tons of time are essential.  Therefore, my nine year old does not know how to ride a bike.  I had tried taking him up on the paved road, but he got so nervous at being on the road with the cars that it was not good.

So today, after taking a load of things to the farm, I decided to spend some time working with him after I noticed him careening wildly in the grass and getting frustrated.  I put him on the bike, and then had to spend some time calming him down.  Then we worked on visualizing how the handle bars needed to be, how his body needed to be.  And then we walked.  Rather, he rode, and I gripped the back of his shirt and walked.  I walked back and forth, back and forth, back and forth down the driveway.  Tiny steps.   Tiny steps.

When he actually got a few feet down the driveway with out me literally holding him upright on the bike, I cheered like he had just won the World Series.  After a while, he got tired, and he had a harder and harder time staying up on the bike.  So, we decided that he was tired, and it was time to stop for the day.

I wanted SO badly for him to end the day by riding that bike up and down that driveway like a pro.  But, it's not about me.  He was happy, and he felt successful.  So, we will keep at it.  Tiny steps momma, tiny steps.

I read something today struck my heart.  Another mom who writes frequently was discussing the Salem witch trials with her daughter, and they came to a section about how "they singled out everyone who acted strangely" and her daughter was upset and said that they would have singled out her autistic sister.  She's a smart little girl.  People fear what they don't understand.  As her mom said, "Awareness matters."  It TRULY does.

Stress

Stress is very hard on me.  So, I can only imagine the nightmare that stress is for J.  The therapist has tried visualization strategies and counting with him when he is feeling angry or stressed, which so far isn't working.  With him though, repetition tends to help with things, so I haven't given up hope.

You can always tell about a week in advance when he is going to get sick, because his behavior goes wild.  He can barely even stand himself.  He's often wild, unable to focus, jittery.

Even good things stress him out badly.  When he was younger, holidays were a nightmare.  We didn't tell him about special events until a day or two before, because his behavior would get so wild beforehand.

So, you can imagine that a trip to the ER for an injury, even if it's not his, would cause him stress.  We had to go to have a wound looked at today.  It wasn't his, but he was very stressed out.  I always try to get him to take something with him when we go for something that might be traumatizing.  But today, Diary of a Wimpy Kid wasn't enough to distract him from the trauma of someone he loved with a cut open finger and potential stitches.

Before the visit was over, he was arguing with C over every little thing, and sitting in the chair smacking himself on the head with his book and crying.

But you know what?  Every day that goes by, we learn a little more.  I realize what causes these events.  I look back and look over all the times that things like this have happened and realize THIS was what caused it.  I look at it now without the anger that I used to have that he wouldn't behave.  Now I just now that it's autism rearing it's ugly head.  Every day that goes by, we learn tools for getting better.

Hubs and I talked tonight about how much he's grown and changed and learned over the years.  For example, for years, he chewed on everything in his path.  He chewed literally through his clothes.  He chewed his fingers until they were bloody.  He chewed through those HARD plastic magnets that you put on your fridge, to the point that we had to get rid of them.  Well, he also never ate.  He lost massive amounts of weight.  Well, guess what we figured out long ago?  He was chewing because he was so hungry.  Once we got him eating, he quit chewing.  I've seen him do it once in months.  But guess what else we figured out?  He was chewing because he was so hungry, but he was so hungry because he wouldn't eat.  He wouldn't eat because he wouldn't move his bowels.

What a vicious cycle autism is.  I constantly want to rage against it.  I want to tear it apart and stomp on it!  I want to scream at autism GO AWAY.

God gave us our son for a reason.  He knew that we would love and protect him with every breath in us.

Med changes

Medication changes are always a challenging time.  This hasn't been so rough, but the changes have been so small so far.  I wait with bated breath to see how it goes.  So far, day two of the new med to help him sleep, and it doesn't seem to be doing much good.  But, I am going to breathe and let it take it's course.  Maybe it just takes a while to build into his system.

A new week starts tomorrow.  Every day is a new chance for beautiful things.

The new doc

We spent over two hours waiting in the waiting room for the doctor yesterday, but after meeting him, I see why. He actually came in the room and spent an HOUR with us.  I have NEVER had a doctor do that before.  He was kind, funny, and he has a child of his own who has autism.  We talked about J for an hour.  He wanted to get to know him.  It was incredible.

We talked about each med that J is on or has ever been on.  We talked about his history, what he does, and how he does it.  I am very careful about what I say in front of J, and the doc was sensitive to that.  J took to him.  Even C did.  They were rolling around on the floor, and the doc told them to wax it for them with their shirts, so they rolled around and were loud and crazy, and he didn't seem to care at all.  Grinned about it, even.

Our sons were so similar.  They had SO many things in common that it was crazy.  The doc was so positive about what a bright future that my J can have.  Every time someone tells me that, I hold it in my heart like a glowing little candle.

At one point, J was sitting in the floor, and I saw his shoulders shaking.  He had his head in his hands.  I asked him what was wrong, and he raised up a red, tear streaked face.  He looked at me, heaved another sob, and said, "I don't want to be this way anymore."  It completely shattered me.  He's really starting to realize the differences between him and everyone else.  The doc immediately jumped in and talked about how it wasn't cool to be "just like everyone else" and that his differences were awesome and were something to be celebrated.  He said that "we don't know why God has this plan for us, but he does, and we work with it."  Wow.  Just wow.

The doc talked about how J is full of poop again.  He felt around on his tummy, and could feel that it was bad again.  He said that he thinks if we can get him going daily, his appetite will improve, and that this will help a lot of things.  His son does the same thing.  So, we are going to work on that and we are also going to work on the sleep.  Sleep is so important to a functioning little mind.  The doctor said that those are our two most important things to attack right now.  We go back in three weeks, and he gave me his card and all his numbers, even if I need to call him after hours.

It was refreshing to have not only a doctor who cared to spend the time, but someone who understood exactly what we were going through.  We swapped "war" stories.  :)