Monday, June 27, 2011

It's all about perspective

Christian is a talker.  And when I say talker, I mean the kind of talker that I sometimes want to wear ear plugs.  The child goes on and on and on and on and, ok you get the picture.  He asks a 100 questions an hour, and sometimes I think he likes the sound of his own voice.

I heard something that really bothered me last weekend.  The boys and I are walking around the store killing some time, so we don't have to go back to our un-airconditioned house, when I hear a woman tell her child she wishes he would just shut up and some other words that I won't repeat. 

I look at Christian, who is looking at the display of Pillow Pets, telling me that he likes this one and that one and that Caleb this and that and I think, why would anyone wish their child would not talk?  Why would you not want your child to fully express themselves?  It is a gift that you should treasure.

Caleb didn't fully speak until he was 4.  He had a lot of problems with his speech and was non-verbal until about 4.  The speech therapists didn't even think he would have speech at one point.  But he did, and even today it is very immature for his age.  But it is a gift that we treasure.  When Christian started talking, I was amazed and I still get a kick out of his range of vocabulary.  He says some of the most amazing things.  When I'm talking to people or his doctors, I tend to get the oh well that's typical speech.  I have to stop them right there.  I have had to point blank say, I don't know what a typical child is, Christian is my first and I am truly enjoying it.

So, if I could say anything to that woman in the store who was yelling at her child to shut up it would be this:
Lady be grateful for your child's ability to speak.  You have no idea how hard it is without that.  You should always treasure their little comments, even if they are not something you want to hear.  A child's voice is a miracle and should be treated as such.  Answer all his questions, because you never know when that voice could disappear.  You never know if you may never hear a sound from your baby's mouth.

Treasure your children's words.  Treasure their questions, even if they drive you crazy.  They truly are a gift that you would never understand until you didn't have it.   

Friday, June 24, 2011

Just have to push harder, fight harder...that's all I can do

The last year has been hard for us.  Deployment, health problems, lots of fun stuff, but we've gotten stronger as a family.

The fight to push harder, fight harder is going to get harder.  Caleb's appointment with his doctor this week was disappointing, and crushing to me as well.  I have poured therapy down that child for years and years.  But unfortunately its not doing what we want it to do. 

The news we received was that Caleb has regressed significantly and is getting more 'autistic.' Yes, I put quotes around that word, because I don't use that word.  I don't like the implications of the word 'autistic.'  It's like saying Autsim is all he is, but it's only a piece of him. 

We have to get a complete and new re-evaluation of Caleb.  That will be done, either next month after we've finally gotten into a developmental pediatrician, or when we go back to see her in December.  Let me tell you something about waiting lists while I'm at it.  Caleb has been on a waiting list for a developmental pediatrician since we moved to Colorado.  That's 2 years people.  Just imagine trying to see your doctor and needing to see your doctor now.  There is such a high need for doctor's who can do this stuff.  I wish there were more!

After hearing the news, my mom was with me and was trying to draw me out of the funk I was in.  I can't explain it.  It's hard for even me to express the amount of crushing feelings I am having.  Part of me is screaming with anger, saying why didn't I do more, push him harder.  Part of me is sobbing with grief, as I am watching my little boy slowly slip further and further into himself.  The biggest part of me is resolved to try even harder.

Most of you who do know me, I am a fighter.  I don't back down from a fight.  When people told me Caleb would never talk, we got him to talk.  You tell me my child won't do something, that's like a challenge.  And I love a challenge. 

The biggest thing I ask is for you to pray for us.  I could really use that right now.

Friday, June 17, 2011

Deployment is ending. So what have I learned on this journey?

My husband is coming home.  It's only a matter of weeks or days now.  I am very excited, but it's also given me some time to think about the last year.  This year has been hard, really really hard.  In fact, there were days when I wanted to throw up a white flag and surrender.  But you can't do that.  You have to go on.  As an Army wife, we have to stay strong for the soldiers overseas, our families, and ourselves.

But it's not always easy. 

There are those days where I wanted to sleep in, where my husband would take over, get the kids ready for school and say, just hang out in bed.  Yeah right...that didn't happen for a year!  And I'm ok with it.  You sleep when you can.

Then there are those nights when you have to mentally tell yourself to stop thinking about all the bad things that could be happening.  What happens happens.  You have no control.  I stopped watching the news.  Except when the government threatened to shutdown.  I should have never watched that.  It just made me crazy.

There are also the nights when you feel so alone.  You want to curl up to your husband and tell him how much you love him.  There's no one there but an extra pillow and you and your thoughts.  Those thoughts compile on top of each other until you're just bursting into tears.  Sure, I'm not a touchy feely person.  But there are nights when I just need a hug or want to be held by my husband.  When you have to miss out on that for an entire year, it takes its toll.  It sucks. 

But you know what I learned?  I learned that I can take just about anything.  I had a good support system, thanks to my two closest friends, Linda and Sueanne, who helped me the most throughout this!  They always listened whenever I needed to talk.  My family was pretty helpful as well.  I don't always get along with them, but we do ok. 

Then there's all the craziness that I had to endure.  From my health, to my kids constantly getting sick or going to the emergency room, or dealing with my son's possible loss of hearing.  I have managed to deal with it all.  This deployment has made me a stronger person. 

I am very glad it is over and cannot wait to have my reunion with my husband!!!  We're counting down the days!!!

Friday, June 10, 2011

Another obstacle my family endures...yet we muster on.

I lost a little of my hope today.  I usually look on the brighter side of things.  I have been through worse.  Today I felt blindsided.  Today was Christian's final hearing screen.  This was supposed to be the last hearing test we were to deal with after all the ear infections, after all the ear surgeries.  THIS WAS IT!  I was excited.  We were done!  We got to the hearing clinic early, as expected with all military appointments, and waited for the hearing screens to begin.  The right ear was perfect.  Then, the left ear showed a big flat nothing.  When you put the ear thing (I'm not sure what it's called) in an ear, the ear drum is supposed to show a little curve, kind of like a lumpy bell curve.  Christian's left ear registered nothing.  It was flat-lined.  The doctor's eyebrow raised, she re-administered the test.  That set off warning bells in my head.  CRAP...this is not good.  Another ear infection, I thought.  Maybe it's nothing.

Then the additional testing began.  She looked deeper in his ear.  She was looking for something...something that I didn't understand.  I thought we were finished.  I thought he was in the clear.  Finally she was done.  Christian was such a pro throughout the entire screening, turning his head, laying still, and doing whatever she asked.  I was very proud of him.

The results are not good, she said.  There are two things that could be going on.  First possibility (the one I'm praying for) is that he's blown another hole in his ear drum from an ear infection.  That can cause hearing damage, but we'll cross that bridge when we get there.  The second possibility is that he has complete and total loss of hearing in his ear.  That is what stunned me the most.  I'm not ready to believe that.  I know there is some great technology that we can get for kids with hearing loss, but after all this time, after all these surgeries to preserve his hearing.

I sat in the car, not really sure how to react.  This battle isn't over for me.  I will be damned if I give up without a fight.  Even if it turns out he has complete hearing loss in that ear, we will fight on.  But I'm still horrified, devastated, and in shock.  I am scared.  This is a new thing for me and I don't know what to do.  I honestly felt completely without hope for a few hours.  I wanted to scream at God and yell.  People tell me all the time, God only gives you what you can handle.  I'm like seriously?  How much more can I handle?  It's one thing after another after another after another.  I feel like an egg with so many little cracks.  One more crack and I am going to explode all over the place.

I pick myself up, call a few people, who help put my mind at ease.  I can deal with this.  I am in shock, but I can deal with it.  I am a strong woman, who has been given a life that not many people could handle, and yet I muster on.  I must pick myself up off the ground and hold myself up for my children, my husband and my family.

The initial shock is over and I have in my head what the plan of action will entail should the unthinkable happen.  Hearing loss isn't the end of the world.  It sucks, but it isn't the end of the world.  Please pray for my family as we walk this very nerve-wracking journey. 

Monday, June 6, 2011

Branching out of my comfort zone: Trying New Things

This is really hard for me to admit.  And it makes me feel like a bad parent.  I don't like trying new things with my children.  I don't like taking us out of our comfort zone of what we do for 'normal' activities.  So far its worked for us for the last 9 years.  But I got to thinking, I am really making a mistake.  My kids are missing out on experiences that they'll never get back.  I am missing out on those experiences.  I don't like blaming Caleb for not trying new things, this is all on me.  I am scared of what will happen with him when we do it.  Don't get me wrong, I am proud to have a child with Autism.  It has given me a calling that I never thought I would ever find.  But it does have some drawbacks for us as a family on occasion.  We can't just up and go do things whenever we want.  We have to prepare.  Those preparations can take on the upwards of hours, days or weeks, depending on the situation.    

I got invited to take Caleb and the other boys to a baseball game.  I'm not going to lie, my instincts SCREAMED no.  But with all the thinking I had been doing lately, I decided, let's give it a try.  And I prepared him for several hours.  I showed him the stadium, I talked about what a baseball game was, I talked how we would have a picnic lunch.  He was prepared.  About an hour before we left, it set in for him.  "I DON"T WANT TO GO!"  He screamed at me.  This is normal for him.  He gets very upset when being taken out of the comfort of his home or put into a new situation.  He goes through phases.  First we scream, then we get very antsy and beg not to go, and finally he accepts it and pouts.  

We got to the car and I keep hearing him ask me, can we go home?  It is nerve-wracking and breaks my heart that this is so hard for him.  It's just a baseball game!  I hear my 4 year old son Christian reassuring him, Caleb, its going to be so fun!  That child is so good at helping calm him down.  There are days when I don't know how I could be so blessed with such a mature child. 

We get to the ball park and the moaning and groaning begins again.  He doesn't want to get out of the car, it's too hot, I want to do this and that.  Again very typical Caleb when he's upset or thrust into a new situation.  But we soldier on.  We meet up with my friend Linda and discover we can't bring food inside.  OOPS!  So it's an impromptu picnic!  We grab a seat on the ground and pull out our lunches.  Caleb is very happy to remember I have packed his favorite: PB&J.  Christian doesn't really care, he just wants to go inside.  Cole is more interested in eating rocks. 

So after we've had lunch and gotten our sunscreen on, we get inside, get our cool new piggy banks and programs.  We find our seats and have a seat.  We didn't realize it was going to be SO hot.  It was 98 at the warmest part of the day.  Glad I packed lots of water, the one thing they allow you to bring in.

We made it to the top of the 7th inning before we felt that the kids had had enough.  That's an incredible amount of time for Caleb to be put into a situation like that.  The stadium was fairly crowded, it was hot, and it was a very over-stimulating situation for him to be put in.  AND I have never been more proud of him for how he did.  He really was interested in meeting the mascot and we chased him a few times to try and get his autograph.  We'll try again next time. 

This really taught me that my son can do more, that I can expect more.  But more so I learned that I don't have to be afraid of what can happen in a situation like this.  I can deal with the stares, I can deal with the snickers, I can deal with the name calling.  I am not afraid.  I just need to be less afraid of the unexpected, which is something I have yet to master. 

Below are a few highlights from the game:

Lesson for me: Don't be afraid to try new things, what happens will happen!