Shock Waves

Twin Sister has been in the hospital for four days now.  She's doing better and scheduled to release early this week, but we are still all on edge wondering if she'll be able to stay stable once she's home.

The biggest change has been medication compliance.  She's taken her meds every time without a fuss.  I just hope this will continue here.

Here on the home front, things have been less positive.  Right now, the hardest thing to deal with is how this hospitalization has sent shock waves throughout our entire household.  Each of the kids is reacting in his or her own way.  And it all came to a head yesterday.

My oldest daughter is angry.  She refuses to speak, won't go to see her sister or talk to her on the phone.  She resents the time we're spending at the hospital as well as the time we're not taking to be with her.  Yesterday, she blew.  Years of taking a back seat to our ongoing issues have taken their toll.  We're trying to help her through this, but I'm afraid its an uphill battle.

Big Brother had one of the best two week stretches we can remember.  The meltdowns were fewer and far between and my funny, happy boy started to make an appearance.  Then yesterday, we saw some major regression.  Another hole in the wall, lots of bad language and the inability to handle even the simplest of chores.

After one of his episodes he yelled, "I know, I don't belong here.  Just send me away."

With that the lightbulb went on.  Twin Sister's stay has brought back too many bad memories of his own time in the hospital.  Him, not knowing how to handle this rush of feeling, acted out.  After some conversations, he was finally able to admit he was afraid of going back himself.  So after much reassurance, he is doing better this morning.  Lets hope it lasts.

Our little guy has also been showing signs of stress.  Hitting, kicking and yelling have all increased.  And for the first time that I can remember, he doesn't want to be left at preschool or the hospital nursery.  He wants me close at all times.

Its amazing to me how fragile equilibrium can be and how this, in turn, brings on some major emotional upheaval.  I just hope that, like other shock waves, we will see a gradual lessening over time.

Where Everybody Knows Your Name

I am happy to report that Twin Sister has settled in nicely.  She was scared yesterday, but showed some signs of happiness when she was visited last night.  And this morning, she called me to proudly tell me she had breakfast -- and took her medication -- without a fuss.

That said, I'm still reeling from emotion.  If you've never had to hospitalize a child, let me tell you, its an amazingly tough situation.  In order to keep both you and your child from freaking out, you find yourself normalizing things that should never be normal.  You calmly explain actions that, in any other context are considered shocking.

For me, one of the most disturbing things is the familiarity.  I've had two children hospitalized for over four months in the last year.  And this has led to a unique problem.  From the ER to the inpatient unit, they know us by name. 

This was utterly surreal.  Walking onto the unit seemed as natural as breathing.  We were greeted with knowing smiles and lots of hand shakes.  I heard "I remember you" way too many times.  Why, it was more like a high school reunion than a hospital admittance.  As we made our way down the hall, I was totally prepared for everyone to turn around and shout, "Norm!" (Yes, I'm dating myself yet again.)

Being popular in high school or at a bar is one thing, but when it comes to placing your child in a psychiatric ward -- not so much.  And for the professionals, I have an odd request.

Don't try to make us feel at home.  It really isn't helping.   Instead,  look at us with total shock and disbelief.

"You couldn't possibly be here."

"These kind of things happened in your house?  No way."

And for God's sake, even if you remember me, I give you permission to feign ignorance.  "Who are you again?"  would be wonderfully refreshing.

Funny, I can't seem to bring myself to pick up the phone and tell those around us of our plight.  That's because when you have one child hospitalized, people can chalk it up to the illness.  But make it two kids and you start getting the looks.  The ones that seem to say, "What the hell is going on in that house?" I've seen this more times than I can recall.

Luckily this time we have our in-home team.  They have our back.  They can attest to the fact that we're not beating our children or causing them severe emotional harm.  Its actually the other way around.

Don't get me wrong.  I love our children dearly.  But as we desperately reach for some normalcy in our lives it is that much more important that we don't belong. 

What's Fear Got to Do With It?

Defiant, oppositional behavior.  Extreme perseverations.  Relentless and intense rages.
So what's fear got to do with any of this?  Apparently a lot.

As we struggle to understand Twin Sister's issues, one thing remains clear.  She suffers from lots and lots of anxiety.  Chances are she always has.

OK, that seems simple enough.  As I think about this, I realize I've always put anxiety on a lower plane than other illnesses like bipolar.    It just didn't seem as extreme.

So when our team began thinking my child is suffering from just anxiety, I kept asking.

Yeah...but can it cause all this?

Their professional opinion?  "Hell yeah."

That's because anxiety is a funny thing.  It breeds fear.  And fear, when left to its own devices, can wreck havoc on everything in its path.

It can cause a body to repeatedly kick into overdrive.  Fight or flight is ever-present.  The sufferer can never relax, never let down their guard.  This leads to chronic edginess.  More importantly, it allows irritability to rule.

This in turn takes its toll on the body.  Physical manifestations can include anything from chronic headaches and stomach troubles to senses that have gone totally haywire.

We saw all of the above this morning.  Twin Sister was getting ready for a field trip.  She was so excited.

But with that excitement came anxiety.  And fear.

Was she wearing the right outfit?  Where were her favorite shoes?  I could see it build as the morning progressed.  She pushed through and was almost out the door when the bottom dropped out.

She had to take her meds.  We've always had issues with medication compliance, but this particular morning it sent her over the edge.  A meltdown ensued that lasted over two hours.  One that left our house in shambles and our nerves frayed.

And it is with great sadness that I tell you the following -- my girl is now in the hospital.

Right now, I have a whole host of emotions stirring around in my head.  I know this is for the best, but my heart is still heavy.  Right before I left her -- crying and scared -- she told me, "Mom, I wish I wasn't this way."

I have no answers, only tons and tons of questions.  Not to mention a healthy dose of fear.  So I will sign off to collect my thoughts and simply ask for your prayers.

Accentuating the Positive

Jen from Autism, the King and I, had a post recently that really got me thinking.  Instead of tackling one of the many issues surrounding an autism diagnosis, she talked about the many positive aspects of her son.

You all know that the last year has been a rough one.  For such a long time, our ongoing crisis made it hard to focus on Big Brother's many wonderful attributes.  But I'm happy to report that now things are different.

We have seen a steady improvement over the last few months.  While he still has troubles regulating his emotions, the meltdowns are shorter and do not happen as often.  He's doing well in school and genuinely likes his environment.  But the biggest blessing of all is that we have finally gotten are wonderful boy back.

For over a year, the medications took their toll on him.  They dulled and depressed him.  Now off almost all of them he's a different kid.  A fun, smart and compassionate one at that.

I love his sense of humor.  He is sly and witty and comes up with the best lines. 

This child also is able to show an amazing amount of compassion.  When his twin sister is struggling, he's the first on the scene trying to help her out.  These days, instead of worrying about his dealings with his younger brother, I often find them both in his room -- with him patiently allowing the little guy to play with his prized Transformers collection.

But I think most of all I love the way his mind works.  He never ceases to amaze me with the concepts he grasps and the inventions he creates or plans to create. 

So for my son, his disability no longer defines him.  He is a great kid who just happens to have autism.  Thanks Jen for helping me to remember this.

Yet Another Game of Diagnosis Roulette

When is bipolar not bipolar?  When its post traumatic stress disorder instead.  Wait.  Did I say PTSD?  What I actually meant was Reactive Attachment Disorder.  No.  That's not right. Its definitely Generalized Anxiety Disorder.  Yep.  That's it.  With a little ADHD thrown in for good measure.

Confused?  So were we.  The above is the Reader's Digest version of our dealings with the professionals over the last few months in regards to Twin Sister.

For the last two years, we've been operating under the assumption that she was bipolar.  At least that's what we were told.  But then, questions started to arise.

Why didn't she respond to any of the meds?  Why weren't any of the tried and true interventions working?

Good question.  Now if someone could just answer them, we'd be OK.  But, to say that Twin Sister's been struggling lately would be an understatement.  She is constantly in a hyper-vigilant state.  Always on edge and extremely defiant.  The littlest setback or disappointment can and will send her over the edge.  And how.

Until our in-home team arrived, no one really appreciated how bad things could get.  That's because when my daughter is in a good place, she is sweet, charming and considerate.

At home?  Well...lets just say it can look a bit different.  And now that the team has been eye-witness to a few meltdowns of epic proportions, they've chimed in with their thoughts.

While she has never been through a major trauma, they began to suspect PTSD.  The next theory was RAD -- even though she was not neglected as a child.  The latest is that instead of bipolar, she may actually have an anxiety disorder.

This does ring true, but I have to say, I'm just waiting for the next diagnosis to come along.  I'm also exhausted by the emotional roller-coaster ride we've been taking.

But let me say, I don't blame the professionals.  I understand that diagnosing mental illness is not an exact science -- especially when it comes to kids.

That still doesn't stop me from feeling like I've been put through the wringer.  I'm also pretty confused.  If we could figure out the whys to the behavior, maybe just maybe, we would know how to help.

Right now, we're in crisis.  At any moment she can blow again.  We've called the psychiatrist only to be told that they won't be able to do anything for her until at least Monday.   After all, tomorrow's her day off.  We wouldn't want to interfere with that now would we?

Actually I think it has more to do with the fact that there are no open beds in the State.  At least not at appropriate facilities.   In the meantime we're bracing ourselves for another rough weekend.  All the while, we'll be praying for a miracle.

A Star Is Born

Most days, I wonder if my kids listen to me at all. This is especially true for my complicated ones. On those rough days, it looks like things like caring, giving and empathy have completely gone out the window.

But then something happens to make me realize they usually take in more than meets the eye.

My kids are big KLOVE fans. If you're not familiar with it, it happens to be a radio station that plays contemporary Christian music. Big Brother is by far the most smitten. Every time we're in the car he asks me to turn it on.

And if I happen to talk? Well that's when I'm told, "Mom, please. I'm trying to listen to the song."

I'm OK with this because, I really don't want to get in the way of him and his worship.

Well it turns out KLOVE is now running a contest. They're asking for song videos from kids. And the winning video will get an all expense paid trip to Camp Electric -- a music camp in Nashville, Tennessee.

When the twins heard the news, they both ran to their rooms to start prepping. Now, I've told you before that Twin Sister is an awesome singer. But Big Brother? Not so much. So I wasn't sure what to expect.

Then he burst into my room and sang me the following:

Jesus gave us everything,
Jesus gave us life.
So come on along with me to help the planet he gave us.
If you dig a little deeper
in your heart you will find Jesus and love,
So stop being selfish and dig out that love.

Tell your friends, tell your family
that we are going to change the world -- one step at a time.
Take care of the body he gave you.
Don't think only of yourself, but think of others.

You should think about Jesus,
He sacrificed his life for us.
He will give us light in the darkest hours.

So help the world, help the animals,
and don't disrespect him.
Always lighten up his heart.

I guess he's been listening after all.  This week we'll work on video taping this and sending it in.  Who knows, we may have our next famous songwriter in the making.

With that I'll sign off knowing I am one proud momma today.

The Return of Thankful Thursday

I realize its been a long time since I've done a Thankful Thursday post.  This week, it's easy for me to find material.

Today I am very thankful for our in-home team. We've had them in our home for almost four months now.  I know someday I will have to say goodbye, but right now I don't know how we'd make it without them.

They have helped us weather some pretty nasty storms. They do everything from provide therapy, rides for the kids, clean -- why they even helped me clean out my basement.  And if you've ever seen my basement, you know that this is no small undertaking.

Most impressive of all -- they do it with heart.  Our lead therapist is amazing.  She's helped us navigate doctor's visits, insurance companies and now she's working on funding for summer programming for Big Brother.

Although things are still rough, at least we have backup.  I'm amazed at how each person in my family has the opportunity to grow from this experience. 

So today, I thank God for this wonderful blessing.  Until next week....