Description:
Life in the Midst of Asperger's Syndrome, Early Onset Bipolar and General Chaos.
Contents:
Switching Gears
I'm a skeptic by nature. And years of following one dead end after another in an effort to help my kids hasn't helped.
That's why, when our in-home team introduced us to the Beyond Consequences intervention model, I took this information with not one, but several rather large grains of salt.
That said, I've tried to keep an open mind. But that hasn't stopped me from doing my due diligence. I researched the the model and the people behind it. I also checked into possible critics and spent a lot of time perusing the website.
While the press was all quite favorable and the general model seemed to make sense, I have to admit, I was taken back by the somewhat hard-sell nature of the site. I am always wary of unscrupulous and unqualified people trying to make a buck on our miseries. I also used be in advertising way back when, and I can sniff out a sale pitch a mile away.
So when things are presented in a salesy way, red flags start shooting up everywhere. After all, this isn't laundry detergent we're talking about -- its our lives. And in the end, I didn't want to invest any time or effort into a strategy that's main purpose is to make money, not help others.
Since we didn't have the money to buy the books or travel to the conferences anyway, we just decided to pick up whatever tips and hints we could from our therapist and team.
That was until Saturday. Both my husband and I attended a free one-day seminar in our area. Yes, it was a bit hyped at times, but we really liked what we saw and heard.
The basic premise is a sound one. Focus on the relationship with your kids, not the behavior. Sounds simple, right? Well, its a little harder than it seems. You see, most of us have grown up on consequences. Act nicely and you get attention. Act badly and you don't.
This model advocates looking past the behavior and to the heart of the child. What is going on within them to cause such drastic measures? It also promises that once a child is heard and knows he or she is loved -- and once the relationship is repaired -- the behavior will change.
While Beyond Consequences was originally built around children who were adopted or had other traumatic backgrounds, but I am told it also works well with kids with mental illness and autism.
Again, this is wonderful, but a huge paradigm shift, especially for anyone familiar with standard autism treatment. So much is based in behavior modification.
So now we will embark on looking at things differently. I'm afraid of failure yet again, but will give it a shot. I'll keep you all posted as to how it goes.
Tag, You're It!
I've always said that the twins tag-team us. When one is having the hard time, the other is doing well and visa versa.
On the positive side that means that we rarely have both of them in a bad place at once. But the downside? We never seem to get a break from the meltdowns, rages and crises.
If I look back over the past couple of months, this seems so very evident. After Christmas, Big Brother was having one of the best spells of his life. The meltdowns were decreasing, he was showing more confidence and was really happy.
At the same time, however, Twin Sister was cycling downward -- and fast. This ended with a hospitalization in January and a long, hard look at her diagnoses.
Fast forward another month and Twin Sister is most definitely on the upswing. While the edginess and anxiety is still there, the new meds and interventions are helping. Whohoo!
Not so fast.
As soon as we think we're out of the woods, Big Brother begins his slide. The slightest demand or setback has him reeling. He is not in control of his emotions or his actions. We have to be ever-vigilant as to his triggers and situations that might send him over the edge.
We're dealing with it, but it is so exhausting. And in the back of my mind have to wonder -- will the day ever come when both of them are in a good place at once? I am going to hope and pray that this can actually happen.
In the meantime, I'd better catch up on my rest so I can face another hard day.
And Now For An Update...
Wow! I didn't realize how long its been since I posted last. Things here have been busy.
Not much has changed in my world. Some things are going well, some are not. We are still tired, over-committed and broke. But there are some pretty big positives I would like to share.
The first bit of good news is that Twin Sister is doing much better. Since her hospitalization she has taken her medicine regularly and, more importantly, it seems to be helping. While she still has a lot of anxiety, she is better able to control it. I can't tell you what a relief this is.
I'm also happy to report that our insurance company has stepped up to the plate -- big time! We met with our case manager and the medical director at the end of February and they really came through. After hearing our story and our progress, they decided to extend our full-time home care at least another month, then will allow part-time care until the summer.
Since summer is traditionally Big Brother's most difficult time, they are even going to pay for him to do a summer day camp, specifically for kids on the autism spectrum. And if that wasn't good enough, they're even willing to throw in some respite funds as well.
When I heard all of this, I thought I had died and gone to heaven -- or at least a to different state. Colorado funding does not usually allow for these type of things. But what everyone in the room decided is that these small interventions would in the end be much cheaper than yet another hospitalization. Ah, I like they're thinking.
Right now, the only bad news is that Big Brother is once again struggling with his anxiety and aggression. We have several new holes in the walls and he is becoming increasingly violent. Considering how well he was doing, all of us were pretty surprised by this regression. That is until we looked at the calendar.
It was just about a year ago that he entered the hospital for a month-long stay. It was a bad time and we think that on some level he remembers this. After one of his blow-ups, he usually screams, "That's it, just send me back."
And that's when I tell him he's not going anywhere. We'll work together and figure this out. Some days I don't know how we'll make it, but we will all the same.
Do You Want the Good News or the Bad News?
Let's start with the good, shall we? I'm pleased to report that Twin Sister came home from the hospital on Tuesday. We are all happy to have this hospitalization behind us.
Things have been rocky over the past few days, but she is trying so hard to keep it all together. I think the medications are helping, but its still too early to tell for sure. We're all going to try to catch up on rest and get on with our lives -- something that sadly gets put on hold during an inpatient stay.
But as one stress eases up, another quickly takes its place. We just heard that our insurance company will be pulling the plug on our in-home services at the end of the month. And the state funding that was supposed to replace it is now on hold due to the dismal state of Colorado's finances. While the funds may be released next month, there is now a waiting list and no guarantee if and how much there will be available.
I am very scared by the possibility of having to go this alone, yet again. The support we've received is the only thing that has gotten us through the last four months. And with things still in a very precarious state, we risk losing all the progress we have seen without the proper systems in place.
But I'm going to try to remain positive and keep the faith. That is after I get some much needed sleep.
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. |
