Hearts are funny.

Hearts are funny in a way.  They can break a million times.  They can shatter into tiny fragments so sharp that you feel like you can't breath, and that your chest is being stabbed in a million places.  It's funny how your heart can break into all those tiny pieces, but still be whole.  It still beats.

I don't know how many times my heart can break for J.  His brother got an invitation to a birthday party today.  He frequently gets invites to things.  J knows this.  He said, "You know how C gets invited to things all the time? How come I don't?"    I tried to stay strong, and as tears filled my eyes, I said, "Well, kids invite different kids, but you will have your birthday party in January."

He said, "But Mom, that's not being invited.  It's not like you get invited to your own birthday party."

What do you say to that?  What do you say to a nine year old who hangs his head and asks those questions? If you have the answers, please tell me, because I have no idea.  I know he's not perfect, but its devastating to watch all the other kids with their friends.  I want so badly for him to find a friend.  If I could find a genie in a lamp and rub it, my only wish would be that he could be accepted.  I don't want him to change.  I love him the way that he is.  But, I want for him to be accepted by his peers.

The countdown begins

 I keep coming here and writing posts, only to delete them halfway through.  I am constantly writing about my fears, and it gets tiresome.

Another couple of weeks, and it will be time for school to start.  Another year, bright, shiny, and new waits for us.  I think that this year will be better than the last.  Toward the end of the year last year, we changed doctors, and it was a good change.  He made several med changes, actually reducing the meds that J is on, and taking away the ones that weren't doing anything for him.   I won't get into a slam about the previous doctor.  I think that he was doing what was necessary to get through his day.  But it wasn't helping us get through our day.

J got to spend the afternoon with friends the other day.  It was amazing.  He rarely gets invited to anything, and to have someone want him to come over, and spend a whole afternoon with him was wonderful.  Little brother got to go too, and they spent the afternoon at the pool, and then at the friend's house, before heading to VBS.

The next couple of days after it have been pretty rough though.  It was another one of those things that we deal with.  Days before and after an event leave J wound up and really hard to deal with.  That, combined with school getting ready to start has made us all cranky. :)

In my dreams

In my dreams, my town would have a place for parents of children with autism and aspergers to gather today.  Maybe it should be a place for all parents of special needs children to gather, because I think all of us can understand what it's like to parent a child who doesn't fit the mold.  We would have a soda, or coffee and eat little treats and relax with each other.  We would talk about our joys and our frustrations.  We would talk about our fears.

We've had a phenomenon the last few days.  J was playing on the playground while his brother was playing baseball.  David and I were watching when we noticed that he was teeter tottering with a girl about his age.  This went on for SEVERAL minutes!  I was so excited.  They walked around together the ENTIRE game!!!  Most do not realize what a MONUMENTAL event this was.  He even let her talk, and he LISTENED!  I know there's a lot of all caps here, but that's how exciting it was.  He got along with someone for an hour.

He's been working hard on a book that I bought him, working on fourth grade skills.  Jackson is a prime example of why No Child Left Behind makes me angry.  He's been working on this book, and doing a wonderful job on the Math, and most of the English.  .  However, he hit the section dealing with figurative language.  J is a child who does not get sarcasm.  He does not get figurative language.  I don't know that he ever will.  He is literal.  He was working on a page of personification.  Things like fog hugging the ground and stuff like that.  We tried and tried on that page.  It makes NO sense to him.  So, I cannot imagine that he's ever going to be able to test successfully on a test about something that I doubt he will ever understand.  I don't know.  Maybe he can memorize what the things mean.  but I don't know that they will ever make sense to him.  We will see.  He took the state test for the first time this year, I am anxious to see how he performed on it when the results come back.  I'm not anxious because I think the test means anything, really.  I am anxious, because the state will judge MY child's intelligence and ability on one test.

How did I miss that?

Sometimes I have to smile a little over the things that happen in our lives.  We went to the bank the other day, and it has a little play area for small children.  J and his brother set to playing in it.  It's a small table with blocks on it.  I finished my transaction and called for the boys to come along.  Without even turning his head, J gave me one of those "just a minutes" that he is famous for.  As I blew out a sigh of frustration, I decided that I would walk over to quietly try to hurry him along and not make a scene.

As I walked over he again told me to wait a minute, so I decided that I would  The money in my hand was going straight to the contractor anyway, so I was in no immediate hurry to pay a bill.  Finally, he was finished.  He was determined that he put every block over on the side with the numbers, and then put the numbers in order, together.  all the 1s, then the 2s, then 3s, etc.  Then, he had to go down the line and read each one out loud to me.

As I listened to him do all of this, I thought to myself, how did I ever miss the signs?  I had to chuckle a little to myself at that thought.

Things have been pretty mellow the last few weeks.  I say that and the world will come crashing down, lol.  His doctor continues to impress me with his caring and ability.  I think that we struck the jackpot with him.  He has completely readjusted J's meds.  Took him off of the things that weren't working and were doing no good.  He takes the time to research, and to do what's best for Jackson.  His previous doc just kept piling meds on him with no real attempt to see what was working and what wasn't.  We would go in and when I would try to explain what was going on, he would up a med and walk out of the room.  But, summer is flying by and fourth grade is approaching.  I don't know how he feels about it, but I am terrified. :)  He will have a teacher that I feel will be wonderful, but the older he gets, the harder it seems to be.

Today is not good.

Today is not going to be a positive or upbeat post, so if that's what you are looking for, walk away..  I don't mean that in a hateful way, but I feel like my heart is shattered into a million little pieces tonight.

J has been involved in sports from day one.  Ever since he was old enough to join baseball and soccer (which is mostly the only sports around here) he has been on a team.  He has loved it, and he has excelled at it.  He zips up and down the soccer field, and he lives for it.  He was an amazing catcher, with strong hits.

But it's all over.  A switch seems to have flicked in him the last year that has turned him from a sunny, happy child into a sobbing time bomb waiting to go off.  I have literally sat at every single baseball practice and game holding my breath, praying that it wouldn't ignite, just this once.  Every single time he has exploded into a crying, sobbing, heaving mass of self-doubt and self-loathing.  I don't know how to make him stop.  I don't know what to do.

We have been to therapy and been to therapy.  We have changed the meds, we have seen the doc.  Doc says drama will more than likely always be a part of his life.  How is he supposed to lead a life like this?  Is it hormones starting to kick in?  Will he always be like this?  Will he be able to be an adult on his own?

Every time he strikes out, or even just hits incorrectly, he stomps off the field into the dugout and sobs like his best friend just died.  Even being walked is not good enough.  We can't encourage him without him freaking out more.  We can't be stern.  We can't do anything with him when he gets like this.  He even did this at practice when something didn't go his way.  Then, because he wasn't on a normal bedtime schedule, the next day was rough.

Tonight he was sobbing that he wanted to quit and was hysterical.

So D and I made the decision to pull him out of baseball.  It was about more than I could bear.  It wasn't that I am such a huge sports fan.  But I have had dream after dream for my son die an agonizing death.  I have always been happy because soccer and baseball were something that I could count on.  Something that he could do.  Something that made him seem a little more part of the group.  Something where he could feel like he was part of something.  Now that's gone.

He's already changed his mind about quitting, but it's just too much.  It's too much to put him through.  The thing that used to make him part of something has turned into something that makes him even more different.  It's too much to put his coaches through.  It's too much to put his team through.  It's too much to put us through.

I sit on that bench and every single time he breaks down, I want to do the same thing.  I want to cry and stomp and sob right along with him.

This is not how it's supposed to be.

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.  :)

Meltdowns

The meltdowns take it out of me.  I wish that I knew how to put a stop to them.  I wish that I knew how to stop them and handle them better.  I wish that C didn't have to witness them.  Today he melted down after I asked him to make his lunch for tomorrow.  He cried, screamed, ranted, and raged for about 20 minutes in his room.  I simply think that the day had been a lot for him.  He kept saying that he had been trying very hard to be good for me all day long.  I think that in itself is hard for him, so when he gets home, he can blow up.   I had a great meeting with his teacher today, and have some questions to ask the therapist.

Therapy

My MIL and I talked yesterday about how beneficial therapy is, and how she wishes more people would get involved in it.  I agree.  I think it would be awesome if more people could have that person to just talk to, let things out with, and learn tools from.  I could use major stress management tools.

J had a therapy session last night.  Hubs and I decided that he would do some one on one time.  The other times that we have gone, we have all gone in as a family.  Little Bro has been a major attention and discipline issue the whole time, and it feeds into J's behavior.  So, after a few times of this, we decided that she needed to spend some time just learning about J.  J was okay with it.  So, he went back with L.  C and I (after he got done whining) sat and read a book during this time.

It was a very good move.  The therapist was able to work on several concepts with him.  They worked on tracking.  J does not track with his eyes.  He tracks with his whole body, if he tracks at all.  He struggles to look people in the eye anyway, so to follow their movement with his eyes is nearly impossible.  He moves his whole body.  He also doesn't track when doing things like throwing or catching a ball.  They worked on that, and we were given some tips for working on that at home.

They also continue to work on social norms.  J just doesn't "get" any social cues or rules that other kids are learning by now.  He doesn't catch looks, doesn't understand most facial expressions, and is pretty clueless when it comes to "proper" behaviors.  The therapist is working on the basics of learning those.

They also worked on friends, what friends are (he couldn't tell her) and how to level people.  For example, if it is someone that just says hi to you in passing, then they aren't a best friend, and so on.

They worked on competing norms.  How the rules of sports apply and sportsmanlike behavior.  How it isn't the end of the world if you are the goalie and someone scores a goal on you, or if you miss a goal.

They talked about anger, and how to handle it appropriately.  They talk about this a lot, and I am hoping that this will help with the meltdowns.  I have begun to notice that Walmart is just too much stimulation. Every time we go in, it results in a huge meltdown in the middle of the store.

The therapist says that he has a lot to work on, and really, he does.  I feel frustrated, because I think about how far along he could be if someone had listened to us in the first place.  But, I will deal with it, because that's all that I can do.  I know that we can work on these things at home too.


I saw a beautiful quote on the tv at the therapist's office yesterday.  The girl in the movie Soul Surfer said, "I don't need EASY.  I just need POSSIBLE."  Hubs and I feel that way

I will also leave you with a funny.  While driving to get J yesterday from a program, C says, "Mom, should I tell the therapist that she has the bad word at the end of her name?"  Let me tell you folks, it took me a while to get that, even longer to quit laughing, and a long time to explain to him how that worked.  LOL!

A new routine

The Hubs and I have decided to go a different route with J.  To make mornings easier, we've decided to use more of the evening to accomplish the next morning's tasks.  We are also going to work VERY hard to not let anything break our routine.  So, this evening Hubs went to do chores, and the boyos and I came home.  With no tv or radio or anything to be distracting, we quietly did homework, got showers taken, clothes picked out for tomorrow, and lunches fixed for tomorrow.  Then, the boys ate dinner and went to bed.  Yes, I said they went to bed. By 6 pm.   J doesn't sleep at all, so I know that he won't sleep, but at least he will be having some down time.  The youngest one however, will sleep and I know that he needs a few extra hours.  I am hoping that by doing all these things in the evening, we can keep down the huge amount of fussing and fighting that they do in the morning.

I think that it is important too, that we get a routine down and we keep it.  It seems like the older that the boys get the harder it is to maintain that routine.  But with J, it just doesn't work to break it.  One later night spent out grocery shopping or doing anything throws him off for days.  If we do have to break the routine, then I need to work harder to get those things done in the evenings before I go to bed.

I am ready for all the fuss to be over with.  This move is driving me crazy, partially because I know it's so hard on J.  The man who bought the place has been so sweet and kind.  I am so grateful for his patience with us in this.  I am also grateful that we will be near an extra set or two of hands.  I think that it will be not only us helping MIL and FIL but them helping us as well.  To be able to just go outside and do the chores while the boys are working on homework, or settled in for the night is going to be so amazing.  It will be just so much less hassle.  On those days when they are staying at home, for one of them to be able to just come over to the house instead of getting them up at the crack of dawn, would be amazing.  It's good to know that we will have someone to depend on, I don't know what we would do without them.

I called the new doc today.  I had to do a questionnaire, and the doc had to read it over, and he will approve us or not.  I am a nervous wreck.  If he even can help J, I have to get past the approval process first, which I never dreamed of.  So, I will update on that and see how it goes.

April

April is Autism Awareness Month.

Help us light the White House Blue this April the 2nd.
Light the White House Blue

Let your voice be heard.  Help our children.  Help my J.

Thank you to another friend of mine who gave me a blue light bulb.  My house will be lit up blue during the month of April.  I plan to order more light bulbs, and I will also be purchasing a pin to wear every day during the month of April.  If you are interested in a pin, let me know, I will order more.

Ah HA!

It is amazing those things that come up now that I go, "ah HA!"  THAT'S why J does that!

J has a tremendously weird sense of smell.  The child can smell something that no other human being on this planet should be able to smell.  It usually drives me absolutely crazy, because usually he's complaining about something that smells.

He fixates on odd things to worry about.  Today, it was storming a lot, and he got very worried that the electricity would go out.  He became fixated on it, searching the house for a flashlight that he could hold in case the lights went out.  Of course, wouldn't you know it, we couldn't find one anywhere.

So, as he paced the floor, wondering where our flashlights were, I looked over and saw a candle on the coffee table.  Eureka!  I asked him if I lit a candle, would that calm him down?  I explained that if I lit it, then if the lights went off, something would be already on.  He said it would.  As soon as I lit the candle, he immediately calmed down and went on about his afternoon.  I never heard another word about it.

Today

I am extremely frustrated with one of the docs that J goes to.  Hubs and I have both discussed it, and feel like he is a doc that has brought us pretty far, but now isn't working for us.  I feel like he is severely overworked, but that's not my fault.  We have been going to him for some time.  The time before last, I took him, and the doc complained at us about how many patients that he had.  He told us that next time we would have to come to another clinic that he goes to, and he wanted to know where we went before we began coming to him.  I have never complained, and have volunteered to go to every clinic that he goes to.  He goes to five that I know of.  He really made me feel like I was wasting his time.

There have been multiple times when I have sent Hubs to go with J, thinking that because of culture differences, maybe this doc didn't respect Moms.  It seems to have no impact whatsoever.  Hubs is just as frustrated with the results.

A typical appointment goes like this.  The nurse calls us back.  She weighs J, takes us into a room, spends a few minutes taking down whatever we can get her told, and then she sends us back up front.  The doc calls us back, (he never remembers J's name, though we've gone to him for SEVERAL years, every few weeks) and he sits and reads what the nurse typed into the computer.  He then takes away a med or ups a med, and walks out of the room.  Typically, this lasts less than ten minutes. 

I am TIRED of feeling like this doctor is doing us a favor by seeing us.  My child is not a number.  I want to know when we go in that he is doing everything that he can to help him.  Yes, the doc is busy.  I get that.  But, my child is just as important as anything else going on. 

He doesn't listen to us.  I am tired of it. This last time, Hubs took Jackson in.  For years we have been telling the doc that J does NOT sleep.  We have tried to get him to help us in some way other than piling on another med, because the meds don't make him sleep. He told us to take him to an ENT and have his tonsils and adenoids checked, and take him to have a sleep study for apnea.  Um, ok.  Don't get me wrong, I am willing to do whatever tests we need to do to find out what is up with J.  But it was a suggestion so FAR out of left field that I couldn't even believe it.  I strongly doubt that a tonsil issue is causing J to overpower the meds that he takes at night and stay awake.  And if he NEVER goes to sleep how in the world are they going to test him for apnea?  I want to figure out what is going on though  If the meds aren't helping, I don't want him taking them.  And in the end, is it just an autism issue that is never going to be resolved?

I have been talking to J's therapist about this, and the therapist has suggested another doc to try.  I am pretty sure that it is something that we are going to have to do, but Lord I am so tired of having to deal with this.  Will I end up going to someone who is just as bad?  Who knows. 

I have learned one thing over the years though.  I cannot sit around and just wait.  Doctors have let us down time and time again.  I have to be proactive at all times.  I just wish that there were a manual of things to do.  Autism is so different for everyone.  No two kids are the same.  It is frustrating and heart wrenching.

Autism

It's such a small word for such a huge diagnosis.  I read a quote today from Aaron Likens that said, "If you've met one person with Autism, you've met ONE person with autism."  How true.  My J is like no one else in the world.  

He's sweet.

He's kind.

He loves to read.

He loves to yo yo.

He is obsessed, literally, with all things electronic.

He feels safer lying under things.

He stays up all night most nights.

He is more than a word-Autism.

He is more than his diagnosis.

I am going to use this blog to vent, talk, gather research, and just do what I do.  There are days that I need to celebrate, and there are days that I need to cry out to God.  

Right now I am completely overwhelmed with the information that is out there.  This place will help me organize it.  On this journey, I hope that you and I can both learn together.  Laugh together.  Cry together.

He is more than just his diagnosis.  He is my son.