Raising Complicated Kids

Is it Over Yet?

noreply@blogger.com (Accidental Expert) — Sat, 31 Dec 2011 01:33:00 +0000

Let's face it. 2011 wasn't the my most stellar year on record. If you've read this blog for any length of time, you know it basically sucked.

It began on the heels of the hubby getting laid off from his job. Then came that fateful day in January when I had a surprisingly major run-in with a seemingly harmless patch of ice. Who knew it would lead to two surgeries, almost a year spent on crutches and a fetching boot becoming the mainstay of my wardrobe?

Issues on the home front added to the fun -- health problems, money problems and a mold infestation to top it off. Needless to say, this series of unfortunate events caused a huge amount of underlying stress.

And you all know how well our kids handle stress.

Major upheavals in routines created a perfect recipe for disaster. And disaster we had. Rages and meltdowns increased almost exponentially. Unfortunately our ability to handle them did not.

We ended up exhausted and spent -- both literally and figuratively. As far as I'm concerned, this year couldn't end fast enough. I've basically been ready to usher in the New Year since about March.

As we head into 2012, things are starting to look up -- even if only marginally. The hubby has embarked on a new career. My leg is slowly starting to heal. And Big Brother is showing some signs of improvement.

While there are still many major hurdles to clear, I am hoping this upward trend will continue. A girl can dream, can't she?

So to 2011 I say bye-bye. And to all of you I wish a happy and prosperous 2012.

O Holy Night

noreply@blogger.com (Accidental Expert) — Sun, 25 Dec 2011 01:49:00 +0000

When I was young, we lived in New York, where one of our big family traditions was to go see the annual Christmas Show at Radio City Music Hall.

We'd get all dressed up, take the train into the City, then wait in a line that, as a kid, looked like it stretched across the whole of New York itself. I remember standing there in the cold and the smell of the street vendors' pretzels and chestnuts. Damn they smelled good.

But given my parents were just a bit frugal, I was denied. Repeatedly. Every single year. I'm not bitter, really I'm not.

This was, however, just a minor setback to an overall awe-inspiring event.

One memory in particular was etched in my memory. No, it wasn't the Rockettes doing their dancing and kicking thing. Or the spectacular orchestra. Not even Santa prancing across the stage.

My absolute favorite Christmas memory of all time was when the theater would go dark and quiet, and a beautiful operatic singer would perform her rendition of O Holy Night as the nativity scene -- complete with live camel and other manger animals -- was reenacted onstage.

I know the show has changed a bit since then. Mind you, these were the days before political correctness. It was still called the Christmas Show, not the Holiday Extravaganza. There were no synthesized remixes or pop influences, just a big lady with an equally big voice. It wasn't as flashy, but to this day this visual captures the essence of the season for me.

Tonight, I'm ripping a page out of the big lady's song book. Because at the center of all the gifts, the wrap and all the feasts lies a little baby. Born to nothing, yet he changed the world forever.

So on this very holy night, I'd like to wish all of you and your's a merry and very blessed Christmas.

Patience Young (And Old) Padawan

noreply@blogger.com (Accidental Expert) — Sun, 18 Dec 2011 23:09:00 +0000

We're a family of tried and true Star Wars geeks. Many pearls of wisdom have been gleamed from this epic tale, as evidenced by the multitude of sayings we've hammered into our kids, over and over again.

But at present, the above is by far the most popular.

At least once a day, you can hear us uttering these famous words to one of the kids. Call it our attempt to battle the epidemic that is instant gratification. But it goes deeper than that.

The last two months have been filled with upheaval. There was Big Brother's traumatic escalation. No sooner did he stabilize (yes, he has been pretty stable now for about a month), Twin Sister began to crumble. It all began with the fateful tonsillectomy and her subsequent refusal to take any meds. That lead to her inability to handle the slightest upset, a three-week ragefest and even a short hospitalization.

At the same time, our family has been getting some sizable levels of support. This includes a therapist coming to our home, where she works with kids, and also has taken a close look at our family systems in the hope of figuring out some ways we could switch things up a bit.

Remember when I said having a kid with autism makes you deal with your own shit? Boy has that one come back to bite me. Each one of us has had to take a hard look at how we've been doing things with concepts of personal accountability, being present in the moment and chaos containment being bantered about.

Yet the one that keeps getting driven home goes back to Yoda's famous words. Patience is paramount: with myself, with the kids and with the healing process in general. Mind you, this whole waiting thing isn't my strong suit.

I'm a take-charge kind of person. I like to fix things. I'm at my best when I can do something. Anything. As long as I can see the results. Fast. When that doesn't happen (which is most of the time), discouragement rears it's ugly head.

I also have a wee bit of difficulty holding my tongue. Yeah, I can tell you're shocked.

When something is wrong, I tend to hit it head on. Not a bad trait, but unfortunately my timing sucks. That's because I usually feel the need to do this immediately. No time like the present, right?

Wrong.

I'm slowly learning that a little time can go a long way. That some distance allows for rationale thought to seep into even the most enraged brain -- both mine and the kids. And while my family can attest to the fact that I haven't exactly mastered this yet, I'm trying to letting them have their space to figure things out -- sans the ongoing commentary from yours truly.

So far this little Jedi experiment has netted some promising results. The more I step back and give them space to think things through on their own, the more they pleasantly surprise me. I guess they've been listening after all.

Don't get me wrong. I'm not totally backing away. I'm wrapping this emerging patience in a solid layer of boundaries and expectations. Ah, but these are topics for another day.

Today, I will focus on the journey. Now I'm under no illusion of reaching that big stable patch in the sky. Not by far.

My kids are always going to struggle. They will always have issues with things like perseverations, rigid thought processes and emotional regulation. We will always have to modify our environment, our lives to suit their needs.

And even though we may never reach that illusive normal existence, I'm still getting the feeling that somehow, someway, it will be OK.

Will Someone Please Shut This Lady Up?

noreply@blogger.com (Accidental Expert) — Wed, 14 Dec 2011 20:35:00 +0000

I have a confession to make.

I'm what one might call demanding. I tend to be extremely vocal and am not particularly skilled at accepting no for an answer.

I'm also fairly intelligent, articulate and a smidge outspoken. I've been described as a squeaky wheel on steroids. And for those organizations that know me -- educational, insurance and mental health included-- I have a solid reputation of being a royal pain in the ass. It doesn't help that I've been known to utter the phrase "just do as I say and no one will get hurt" on more than one occasion. This usually leads to the agency-at-hand acquiescing in some way just to shut me up.

The funny thing is, I make no apologies and have no remorse. Not. One. Little. Bit.

That's because while the above traits could be considered the makings of one hefty character flaw, this particular skill set comes in handy in the raising of kids with special needs.

A recent article in the LA Times lends credence to my point. It concluded that warrior parents -- basically those who were more adept at making a stink -- get more services. Conversely, those that don't have the awareness or the confidence to speak up, don't. It's a sad fact that autistic children coming from disadvantaged families get shafted when it comes to getting what they need.

I have seen this firsthand. Because of our financial situation over the last year, we became part of the public healthcare system, namely Medicaid. If you think your private insurer is bad, Medicaid is ten times worse. Things that most insurance companies won't bat an eye at are summarily denied. Mind you, these aren't things like cosmetic surgery or other frivolities, but basic health services.

This is even more pronounced when you have a child with a developmental disability. As I covered in an earlier post, Colorado Medicaid came out on record and said, "We don't do autism." If the child has an autism diagnosis, they will not pay for behavioral therapy. So many families turn to public mental health centers for help.

There they are often met by professionals with no training in autism and too few resources. As a result, they will given therapies that are not only ineffective, but can also do more harm then good. Many times, whatever meager services are offered will be yanked away too soon because they cost too much.

As a result, there's a good chance the kids won't show improvement and will be deemed out-of-control and placed in a residential facility. These placements -- lovely, state-of-the-art facilities (NOT) meant for kids with serious emotional disturbances -- only add fuel to the fire, causing the child to regress even further. The cycle continues until the child finally ages out of the system and is either left to their own devices or placed in yet another institution.

I had an exchange with my daughter's psychiatrist last week that brought this home. We were discussing how some of my daughter's severe behaviors looked very spectrum-like. Not surprising, considering my daughter's diagnosis is PDD-NOS, yet remembering this was a pesky detail that slipped the doctor's mind. Yes, confidence in her decisions was abounding at this point.

But wait. It got worse.

When I asked for her recommendation on how we could handle the behaviors, she gave me an answer that still haunts me. She basically said that there was nothing that could be done. Kids with autism don't understand consequences and as many of them reached adolescence the only thing to do was do place them in a facility.

Yes, this came from a professional. Are you freaking serious?

Mind you, she is a nice woman -- one who is truly trying to help. She may be well intended yes, but informed? Not so much.

When I ever-so-politely pointed out the error in this logic, I was told that while this statement might not be true for the general population, it was the trend when it came to autistic kids on Medicaid. The reasons stemmed from things such as the parents' own untreated mental illness or lack of resources to deal with the issues.

While I know better than most that placement is sometimes warranted, it is most definitely not the norm. Not even close. I think it is unconscionable that someone would advise otherwise.

I know this. You probably know this. But what about the families that don't? The ones that take this as truth because the doctor said so? What becomes of their kids?

And that leads me to the following question: How many kids are being thrown away as a result of professional ignorance and/or the lack of resources that can truly help?

No matter what the exact figure, it's too many in my book. This is just not acceptable. So me and my little warrior gene are sitting down at my warrior laptop to do what we do best. As I write, I fight. I'm shooting my mouth off yet again in hopes that some of my comrades-in-arms will join in to make a collective stink. Maybe then, things will finally change.

If It's Not One Thing It's Another

noreply@blogger.com (Accidental Expert) — Tue, 29 Nov 2011 03:08:00 +0000

I'm dating myself yet again I know. But as the events of the day unfolded, I kept having these creepy visions of Gilda Radner spouting out this classic line over and over again.

First, I almost made it...the whole 30 posts in 30 days. I was so close. I even posted on Thanksgiving. But a whole week at home with the kids caught up with me by Friday. So did a birthday party with 11 six-year-olds and sheer exhaustion.

I think I landed myself in bed by nine each night. In most cases, the kids were up later than I was. So all those great posts...the one on Black Friday, the Stinker's Birthday party and an evening out with friends...are all useless drafts sitting in my Blogger dashboard.

That's why I was really looking forward to today. All the kids back at school would give me some time to catch up. I had a list a mile long and was raring to go.

It was a great plan, really. Maybe someday I'll actually get to use it.

Instead, I got hit with not one, but several fun surprises. I don't want to bore you with the gory details, so here's the Reader's Digest version of the last 12 hours:

One of the kids went out to the Hubby's car yesterday to retrieve a lost item out of the trunk and promptly lost his key. Did I mention it's his only key? It's one of those expensive, computerized contraptions that you have to get from the dealer. We kept meaning to get a copy made, but somehow, we kept getting sidetracked. Go figure.
This morning the key was still nowhere to be found, leaving us one car and about twenty errands. So me and the hubby spent our only alone time in months going to my physical therapy, waiting in line at the DMV and hanging out in the kindergarten pick up lane. How very romantic.
I think the hubby's cell phone may have run off with the key, because it hasn't been seen either. Therefore we spent a good part of our day ransacking every room trying to find the happy couple. Considering the current state of my house, this could take a while.
Our stove decided to join in on the fun. As dinner was cooking last night, it up and quit on us. I'm jealous because I've been threatening this for years. So after we're done taking the one working car to the car dealer and the cell phone store, we'll be swinging by the appliance store to find a replacement.
I got a call from Grandma's rehab facility. I guess they don't take too kindly to her trying to fire her physical therapists or arguing with the doctors about her orders. She may be asked to leave and they were wondering if we might be able to take on her care. If you knew my mom, you'd understand why it took me a while to stop laughing hysterically.
While this was all going down, our kids thought it might be fun to see just how far they could push mommy and daddy before they went completely bonkers. Although we're holding our own after a couple of meltdowns, a tantrum and some good old fashioned teen angst, the night is still young...

I'm now signing off to go to bed. If tomorrow is anything like today, I'm really gonna need to rest up.

I'm Thankful for Turn-Arounds

noreply@blogger.com (Accidental Expert) — Fri, 25 Nov 2011 05:05:00 +0000

Remember yesterday when I said we had a calm, relaxing day? Well, I typed too soon.

Last night, Big Brother quickly became agitated when I asked him to turn off the computer. One thing led to another and he was once again whisked away to Grandma's hour for the evening to chill out. Even after he left, the stress this meltdown caused was felt by his two sisters. Much of the evening was spent working through their own struggles with his behavior and how it affected their lives.

So when he and the hubby walked in this morning, I was hoping it would be with a new attitude in tow. We really needed a break. Yet the festivities continued. Everyone seemed on edge and ready to rumble.

I was beginning to wonder if I'd have anything to be thankful for today.

Holidays are always tough. This is rather ironic because all of us look forward to them so much. But many times this same anticipation-- mixed with disrupted routines, large gatherings and increased pressure -- gets in the way. Sometimes, its just too much to handle.

Late in the morning I had to run out to run a quick errand. When I left, things were tenuous and as I pulled up into the driveway I was pretty nervous about what I might walk into. I was fully expecting WWIII to have erupted in my absence.

But someone must be looking out for us, because what I walked into was a calm, happy and organized family ready to head out for the day.

We ended up enjoying a wonderful Thanksgiving feast with several dear friends. We ate way too much, talked about everything from football to politics to religion (with no heated arguments I might add), and the kids had a blast. Yes, it was a good day indeed.

So it looks like I have a lot to be thankful for after all. I am thankful for a gorgeous day. I'm thankful for my family and friends. But most of all, I'm thankful for turn-arounds. That's because these show me that even when things are bad, a silver lining is never far away.

Six Times the Thanks

noreply@blogger.com (Accidental Expert) — Thu, 24 Nov 2011 00:57:00 +0000

I'm not big on surprises. I like things well thought out, well planned out and then some.

It was a little over six years ago that I got one of the biggest surprises in my life. My oldest was eight and the twins were six and finally in school full time. For the first time in years, I had free time and was loving it.

And this was when I found out I was pregnant with my youngest. As far as surprises go, this one was about as big as they get.

First, we thought we were done. I had just the year before given away all the baby stuff and we had mentally prepared ourselves to move on. Second, I had three kids in 2 1/2 years, and although we didn't know it at the time, we were also in the middle of special needs central.

Third, I wasn't one of those I-love-being-pregnant kind of gals. For me, the usual glow you see from an expectant mother took on a lovely green hue.

My previous pregnancy with the twins was no day at the beach. I had severe morning sickness that lasted all nine months and landed me in the hospital on several occasions. As it turned out, my pregnancy with the little guy was even worse. I ended up in bed most days unable to get up or care for my kids.

The icing on the cake was the fact that right smack dab in the middle of this all, we received Big Brother's diagnosis. All those years of meltdowns, sensory overload and social issues were finally encapsulated into two little words: Asperger's Syndrome.

So now, in addition to being sick as a dog, I was also gripped with unrelenting fear. Being ill was soon trumped by the endless worry of how I would be able to take care of my newly-diagnosed son AND a newborn. I didn't know if I had it in me.

Then it happened. The Little Stinker entered our lives. From the moment I laid eyes on him I knew I couldn't imagine the world without him. And that was six years ago today.

He is truly my Thanksgiving baby. Through him, I've been lucky enough to see the world from a child's eyes one more time. And what a blessing it's been.

My youngest child is a true force of nature. Precocious, wicked smart and appropriately named, he can be quite the stinker. When the house is quiet, well...we all know something is very wrong. More often than not we'll find him concocting one of his famous creations, which usually consists of new arrangements for my furniture, a mountain of legos, the food in my refrigerator or all of the above.

It is a sad fact that all too often, given the craziness of our household, our youngest has had to fend for himself. But not today. We spent the day doing his favorite things, eating his favorite foods and opening lots and lots of presents. Everyone cooperated. I'm pleased to report there were no major meltdowns and no rages. Just a nice relaxing day.

So to my young son, I wish a happy birthday. You have been such an amazing joy to all of us and for that I am truly thankful.

Wordless Tuesday

noreply@blogger.com (Accidental Expert) — Wed, 23 Nov 2011 04:56:00 +0000

Saw this in the Denver Post today and just had to share. This is life in Colorado for you!

Clarence Rides Again

noreply@blogger.com (Accidental Expert) — Tue, 22 Nov 2011 01:38:00 +0000

It's been quite some time since Clarence has graced the pages of this blog.

"Who the heck is Clarence?" may be the first words to come to mind. But you've probably already met. After all, who hasn't seen It's A Wonderful Life?

You may have thought this bumbling angel was just a quaint character conjured up by some Hollywood types way back when, but to me he is very, very real. And he and his friends have the uncanny knack of knowing when I'm at the end of my rope. That's when they swoop down, sprinkling just enough hope and happiness to keep me going.

Many moons ago, I wrote about how Clarence and his cohorts touched our lives. A couple of examples can be found here and here. Well guess what?

They're baaack. And how.

Not that they ever left, but the magnitude of the blessings I have seen in the last few weeks has been downright amazing.

Once our plight became public, the calls started coming. These were followed by emails, words of support and many, many prayers.

But it didn't stop there. Next help came in other, more tangible forms. Meals, gift cards and even some cold, hard cash showed up just as we needed them most. Add to that the bumped up support from the professionals around us and life is finally looking a touch more positive these days.

The last year has left me feeling so very isolated. I truly thought no one could understand and worse yet, that they didn't even care. How could I be so wrong?

In the last month, I've seen an outpouring of kindness and empathy I didn't know existed. We no longer feel alone and abandoned. Instead, we're feeling loved and blessed. So to all those who have reached out and touched our lives, I thank you from the bottom of my heart. You and Clarence make one hell of a team.

When Minor is Major

noreply@blogger.com (Accidental Expert) — Mon, 21 Nov 2011 04:43:00 +0000

If you ever have a teenager that needs their tonsils out, I have one piece of advice.

DON'T DO IT!

It was supposed to be simple. A straight forward procedure to help Twin Sister with her sleep apnea. She would have the procedure done, spend a night in the hospital and take a couple of weeks to recover.

If it were only that easy.

First, there was the pain. From what the doctor told us, this surgery is a lot harder on older kids than it is on the little ones. And they weren't kidding.

For the first couple of days, my girl was in too much pain to swallow. This made it hard for her to eat. We expected this. But what we didn't anticipate was her unwillingness to take any pain meds. She also wouldn't touch the ten gallons of ice cream I stocked up on before the big day.

As the pain got worse, so did her anxiety. This made the pain worse. So much so, she wouldn't even drink. By day four, we were getting worried. In the first week, she lost 10 pounds.

With the help of the doctor, a couple of nurses and a whole heap of bribes, we finally got her to take in some nourishment. But medicine was something she still couldn't handle.

This led to some unintended consequences.

Ten days after surgery she is now medication free. She is off her anti-anxiety meds and her mood stabilizer. And this is a scary thing.

Even with the medications, she has been anything but stable. And now?

Luckily she is starting to do a bit better. We've had a few minor incidents, but overall, the last few days have been quiet ones. Hopefully the following week will be the same.

Oh, the Quiet

noreply@blogger.com (Accidental Expert) — Sun, 20 Nov 2011 03:25:00 +0000

Today was a pretty calm day. Wait, did I just say that?

Yes I did. Too bad I've been too under the weather to fully enjoy it. Instead I'm coming down with the nasty bug that's been going through the house. So I spent the first half of the day running errands and the second half in bed. Dang, and I had such grand plans too.

Good thing everyone cooperated and was well-behaved. Everyone except the Little Stinker that is, who has strep and was in rare, rare form. Luckily he crashed and burned early, and was found face down in his bed by 5 pm.

Hopefully this virus will be short-lived and I'll get able to get up and running again tomorrow. But right now, I'm basking in the quiet that I know won't last long.

Over the River and Through the Meltdown

noreply@blogger.com (Accidental Expert) — Fri, 18 Nov 2011 19:03:00 +0000

Over the years, we've seen our fair share of professionals. We've employed psychiatrists, psychologists, BCBAs and social workers. It was through their expert guidance that we tried a virtually endless number of techniques. Token economies, point systems, cognitive behavior therapy, you name it, we've tried it.

All have met with limited success. Some have actually done more harm than good. We'd pretty much given up.

Yet somewhat accidentally, we've stumbled on a behavior modification intervention that has netted astounding results. One that wasn't developed by a PhD and didn't require a sizable monetary investment. Brilliant in it's simplicity, it could be summed up in one word.

Grandma's.

For those that are just tuning in, we were forced to take some desperate measures about ten days ago. You can read about them here. These included packing our bags, splitting up our family and bringing my complicated two to my mom's house for a major time out.

Here we enjoyed a surprisingly calm visit. Everyone eased up and chilled out. We would have stayed longer, but Twin Sister's tonsillectomy required the melding of our household so she could recuperate in the comfort of her own home.

Even after everyone was reunited, things remained fairly even-keeled. Why we didn't have a major meltdown in over a week. It may not sound like much, but personally, I can't remember the last time this happened.

Then yesterday hit.

Big Brother was home from school sick, I was running to and fro to different happenings, and I'll admit there wasn't much oversight. When I finally came up for air, his eyes took on that glazed-over look that usually comes from too much computer time. So when I asked him to transition from his game and take a nap, he quickly became unglued.

This is where we'd normally start to sweat it. Where I would become upset and disillusioned because could only watch as my son wrecked havoc throughout our home and among his siblings. When visions of 9-1-1 and emergency rooms and doctors would dance through my head.

But not yesterday.

We had Grandma's.

The hubby quickly whisked Big Brother away and to Grandma's house they went. Yes we had a pretty ugly ten minutes as this all went down, but within another 10 minutes of leaving our house, our boy was calmer, our house quiet and no one was hurt. A peaceful, uneventful evening was had by all.

This morning, a very different child entered my home. Well-rested and happy, the remainder of the day has gone well. In the meantime, we once again sent the message to the rest of the family that we were doing something and that their safety mattered to us.

My only hope is that my boy can generalize this event and realize that acting out is no longer acceptable. Only time will tell, but in the meantime we made it through another day -- without police, crisis team or ER involvement necessary. And that, my friends, is cause for celebration.

It's Not All Me -- A Follow Up to Yesterday's Saga

noreply@blogger.com (Accidental Expert) — Fri, 18 Nov 2011 01:30:00 +0000

You may be surprised to learn that I am a horrible public speaker. I fumble for the right words, mix my metaphors and fluster very easily.

I think that's why I took up writing. It allows me the time and space I need to organize my usually scattered thoughts. I can write and rewrite until they come out as intended.

Yet even then it's not always perfect. As I re-read my post from yesterday, I realized I needed to clarify some things. I did not want to give the impression that I singlehandedly took on the system. That it was me against the world.

In reality, this is far from true. There were several, very important people (and a higher power) that definitely had my back.

Before yesterday's meeting, I spent a lot of time in prayer. I prayed that the right words would leave my lips, and that God would touch the hearts and mind of the others in the room. I prayed that whatever decisions were made would be guided by His hand.

I am convinced that whatever I said yesterday did not come from me. As in everything, His plan was playing out and I was just an instrument.

Also, my words were not alone. My husband may have not said a lot (and this might have to do with the ever-so-slight issue of him not being able to get in a word edgewise -- Sorry honey!), but as usual, what he did say was dead on and to the point. Everyone in the room took note of that. I don't say it enough, he keeps me honest and he keeps me sane. He is truly my rock.

Lastly, I need to acknowledge the other professionals in attendance. I may not agree 100% with their assessment of the whys of our situation, but they are definitely on our side.

It would be an understatement to say they have gone above and beyond the call of duty to advocate for our family. And as the services we are receiving were listed off yesterday, I realized the amazing amount of support they are giving us.

Mind you, this is coming from a county mental health center, so these people aren't raking in the big bucks. They are truly in this business because they have heart -- and lots of it. Through them, we have seen more professionalism and results than from the majority of "experts" we've hired along the way.

To sum it up, yesterday was a real group effort -- and in my mind, this team definitely rocks!

A Whole Lot of Finger Pointing Going On

noreply@blogger.com (Accidental Expert) — Thu, 17 Nov 2011 00:20:00 +0000

Today was the day. The BIG day.

This morning we had our fateful meeting with the county social services representative.

The meeting started like most other meetings. Introductions, situational analysis and each professional's take as to why my son and our family was in such a state of ongoing crisis.

That's always fun.

Because inevitably they bring up the curious fact that Big Brother only acts out at home. This is usually followed by a collective hmmmmm.

OK folks, I'm getting tired of this. Has anyone read Tony Attwood? Have they never heard of the whole Dr. Jeckyl and Mr. Hyde phenomenon so common with many our kids? Guess not. Instead they spend their time looking for some hidden skeletons in our closet to explain this supposedly perplexing behavior.

Next, they went on to the fact that our house is chaotic.

Yet another No-Duh moment in my book. But again, others in the room approached this fact with some degree of wonderment.

It amazes me how blind a group of seemingly intelligent folks can be. Maybe that's because I think the cause is a pretty obvious one. Start with four kids (including two on the spectrum with big behavioral issues). Add in little to no meaningful support for the last 13 years. Stir in long-term unemployment and a mom that can't walk. Let sit for eight months or so. Congratulations! You have just mixed up the a big ol' batch of chaos.

So when the room was done raking us, our parenting skills and our children over the coals, cards were laid out on the table. The social services guy was quick to announce that their mandate was to serve families where abuse and neglect were present. Because we're not abusing our kids, they had little to offer.

And this is how I came to blow my top. I proceeded to let loose a whole heap of frustration on my poor, captive audience.

I laid out our story. How we had been trying to get help for years. How time after time, we were passed off or how, when services were approved, they were yanked away too soon.

We were a problem that belonged to no one. The county saw it as a behavioral health problem, thus passed the buck to the mental health system. The mental health system could not claim us because we were dealing with a developmental disability, not a mental illness. Everyone pointed fingers at everyone else, leaving us with a big fat zero.

I then proceeded to tell them how my family made for great headlines. How soon, someone would get hurt and everyone would wonder how this could happen -- especially considering how the system had been aware of the problem for years and refused to act.

I reminded our friends that, although guidelines and criteria existed, so did exceptions to the rule. And how there should always be room in everyone's budget to do the right thing.

I'm not sure what changed, but after my soliloquy (as the Hubby called it) there was a shift. The social services guy began to listen and take notes frantically. The others in the room shook their heads in agreement.

Thus started the age of reason. A productive conversation ensued, brainstorming began and ideas were discussed. Of course, no decisions were reached but I think we got their attention. At the very least, they know we will not be so easy to write off.

Only time will tell if the powers that be were swayed enough to take action. But whatever happens, I know we've done everything we can to advocate for our kids.

Just Call Me Gimpy

noreply@blogger.com (Accidental Expert) — Wed, 16 Nov 2011 02:06:00 +0000

If karma exists, I must have messed up royally in a former life. Or maybe it was this life and I've just blocked it from my memory. Either way I'm screwed.

My visit with the new orthopedic surgeon didn't exactly go as planned. I thought this would be a chance to get a fresh set of eyes looking at the X-rays, CT scans and reports. I was hoping to get an honest opinion on how my leg was progressing and do some problem solving as to what we could do besides wait or have more surgery.

Turns out the new doc knows the old doc. It also turns out that she not only knows him, but happens to be one of his biggest fans. The first half of the appointment was spent singing his praises, while the second half was dedicated to the reasons I should go back to him. Even the residents chimed in. If I didn't know better, I'd think I'd died and gone back to high school, where I was forced to spend eternity with a bunch of really annoying cheerleaders.

So, in essence, I waited a month to drive an hour to see a doctor that wouldn't even give me the time of day. Again, just like high school.

I'm just left asking what I did to piss off the universe so badly? How could one person's luck be so bad?

What I heard from the new doc was eerily familiar. Either my leg will heal or it won't. Yep, it took a doctor to come up with this one. The recommendation was equally as brilliant. "Just do what you're doing for a few more months to see if things kick in. If it doesn't heal, we'll just do more surgery." Oh yay.

And in the meantime...who needs to walk anyway? It's not like I have four kids, a house and a life I'd like to get back to or anything.

There was another slight glitch. My leg is currently home to a couple of plates and a bunch of hardware. And while these are strong suckers, they're not meant to support a broken leg for -- oh -- ten months or more. This means that there's a good chance that while I'm trying to walk, I might just break a plate. This would be a bad thing. It gets me on the fast track to the ER, more surgery and more months off my leg.

There was one positive about my visit. I did get the name of another specialist and I called to make an appointment as soon as I got home. Too bad I can't get in until the end of December.

So while most might think that karma is good and zen and all that, I'm pretty sure it's evil and basically out to get me. Wrong or right, my current plan is to trick out my cane. It looks like we're going to be together for a long time to come.

Rambling On...

noreply@blogger.com (Accidental Expert) — Tue, 15 Nov 2011 01:34:00 +0000

OK. I've started this post about ten different times and can't come up with a cohesive idea. So instead, you will need to suffer through my stream-of-consciousness (commonly known as rambling) thoughts.

I'm. So. Very. Tired. I think I'm coming down with the resident nasty-bug de jour. Chills, aches and nausea have entered the building. I so don't need this right now.
I'm. So. Very. Scared. Met with the therapist and psychiatrist today. We're set for our meeting with social services on Wednesday and it looks like everyone is recommending an out-of-home placement for Big Brother. Oh crap.
I'm. So. Very. Confused. Even though I'm starting to see cracks in the facade, we've had a really good week, behaviorally speaking. No major meltdowns to speak of. Yes, we've been down this path before and even though I know it won't last, I keep holding out hope that maybe things could be different this time. Thus, my resolve in The Plan ain't what it used to be.
I'm. So. Very. Broken. It's been over ten months and my stupid let just won't heal. Tomorrow I have yet another appointment with a new specialist to see what they recommend. Just to let you know, my current (soon to be former) doctor is recommending yet another bone graft surgery -- without trying to find out why it isn't healing in the first place. No thank you.
I'm. So. Very. Broke. A year without income will do that to you. And, with two birthdays and Christmas right around the corner, I'm sweating it. I'd consider hitting a bank, but my get-away would be seriously compromised by my current inability to walk.
I'm. So. Very. Sad. To figure out why, just review all of the above.

And that about sums up my day and my state of mind. Hopefully for me and everyone tuning into this blog, my mood will improve tomorrow.

There is No Magic Bullet

noreply@blogger.com (Accidental Expert) — Sun, 13 Nov 2011 18:31:00 +0000

It's no secret that I hate meds. With a passion.

I hate the fact that there is little to no research available for children.

I hate that my kids are used as human guinea pigs and that the long-term affects to them and their developing brains is still unknown.

I hate that many doctors prescribe many potent meds without much thought -- that they gloss over the possible side effects.

I hate the side effects themselves. How they cognitively dull, tire, nauseate and worse.

And I hate the fact that finding the right medication or combination is anything but an exact science. It's more like shooting in the dark.

So you may be surprised to learn that both my kids are on one or more medications right now.

Now before you go and judge me (didn't we just cover this in my last post?), here me out.

The fact of the matter is when it comes to kids and behavioral issues, the science, the diagnosis and the treatments are still in their infancy stages. Even if the diagnoses may fade (At one point, my daughter's seem to change like the days of the week), the issues are real. Very, very real.

I know there are those out there suggesting that kids are being over-diagnosed left and right and that America is producing a whole generation of zombie-like children whose behavior issues are the result of bad or overindulgent parenting.

I'm here to tell you that if these families exist, I've yet to meet one. (and I know a lot of families with special needs kids.) Instead, the people I know have agonized over this decision. They've spent countless hours weighing the pros and cons of all the options and are trying to make the best choices given the information at hand.

For our situation, meds are a necessary evil. They offer no magic bullet, but give us a little backup. They help to delay my kids' overtaxed systems going from 0 to 100 in a millisecond. With medications on board, we buy a little time. That may not sound like a great benefit, but when dealing extreme behaviors that can threaten everyone's safety, it's an invaluable tool.

I know medications aren't for everyone. Believe me, I wish they weren't for us. My only advice to others considering medications for their children is to do your homework. Don't rely on the doctors to tell you everything. Instead ask questions, talk to other parents and Google, Google, Google.

Most importantly, don't let the critics get you down. If you decide to go this route, throw the guilt out the window. In some cases and for some conditions, medications are key to a successful treatment plan. But just like so many interventions for our kids, we don't know if it will work until we try. And at the end of the day, it's your willingness to do whatever is necessary for your kids that is important.

This post was written for the S-O-S Research Blog's Best of the Best. Check out Edition 12 of the series here after November 15.

Shame on Me

noreply@blogger.com (Accidental Expert) — Sat, 12 Nov 2011 23:30:00 +0000

Lots of calls have been made over the past week. Family, friends and acquaintances were all apprised of recent events.

The most common response?

“We had no idea it was that bad.”

Even the professionals chimed in.

“Why didn’t you tell us?”

“How come you didn’t report this?”

Actually, we did. But that was long ago.

We told family first. Oh how quick they were to discount our fears.

“It’s normal kid’s stuff. They’ll grow out of it,” they said. Or, “Come on. It can’t be that bad.”

Then of course there was the advice. This mainly revolved around the presumption that our disciplinary tactics were just not firm enough.

As the kids grew and things got worse, we began to tell the professionals. They took copious notes, asked questions and gave simplistic advice – all confined to our 50 minute sessions of course. When our time was up they would nod sympathetically, leaving us to fend for ourselves until the next week.

In the meantime, if we called to report this or that, they did what they did best. They referred us to the nearest emergency room. After all, we wouldn’t want to disrupt their evenings.

Once at the hospital, we again began our tale only to be told on more than one occasion that things were just not bad enough for help. More sympathetic nods, but the message was clear. It’s your problem, not ours. Have a nice day.

It got to the point where we could no longer hide our children’s differences from the other families in the school pickup line. Too many days of me showing up with puffy eyes or a worried look gave hints that all was not right in paradise.

As we began to disclose diagnoses and behavior to the other parents, there was initial sympathy and concern. But as time passed and our situation did not, the sentiment quickly became one of avoidance and impatience. Again a message was sent. This is a family with issues. Run away.

As days turned into months and months into years, a funny thing happened. We stopped speaking the truth. It was just easier that way.

For one, it was too painful to bare our souls only to be met with disbelief, discounting and disdain. So we said things were fine and went about our days.

We also had this pesky yearning to hold onto some shred of privacy. The revolving door of intake forms and family histories makes one long for the days of relative anonymity.

And then there was the shame. I know the hope is that, in this day and age, the stigma of mental illness and behavior issues would be lifted, but I think someone forgot to tell the rest of the world.

Judgment was everywhere we turned. Not just from friends and family, but from the professionals we so desperately turned to for help.

Intellectually we could put this aside and seemingly ignore the naysayers. We could boldly proclaim how it no longer bothered or affected us. Yet somewhere inside it remained, stubbornly hiding in the deep recesses of the brain. And the more we felt, the less we said.

These days the veil of embarrassment is lifting. We have no more energy left for this useless emotion. All hands are on deck, focusing on healing our family and helping our children find their place in the world.

But to all of those scolding us for not speaking up sooner, let me make this perfectly clear. The problem isn't us not speaking, it's that no matter what we said, no one bothered to listen.

Game Plans

noreply@blogger.com (Accidental Expert) — Fri, 11 Nov 2011 21:38:00 +0000

Talk to any special needs parent and they've got a plan. Chances are they have several. They have the OK-We're-Going-To-Do-This plan. But they also have an almost infinite number of alternate scenarios based on an equally infinite amount of variables.

This is where we diverge from our "normal" counterparts. Most parents can employ sayings such as "we'll play it by ear" or "let's see how it goes" or we "hang loose." Just so you know, you will never, ever find any of those entering our vocabulary.

Instead, we map out every event and every outing. We're going to the store. If my child does not have a meltdown we will do A. If a meltdown ensues, but is short-lived we'll do B. If all hell breaks loose and we have to cut our loses, we'll to C. The list goes on and on.

Since our kids thrive on routine and predictability we simply can't afford surprises.

Yet this relationship is a love/hate one. Because without fail, one of our variables changes, and of course it is the only one we didn't account for. This in turn sends each one of our contingencies tumbling down like a house of cards. Chaos is not far behind.

Yesterday was no exception.

Twin Sister's surgery was scheduled three weeks in advance. At the time we were told she'd be spending the night. Thus the coordination began. Twin Sister was prepped. Repeatedly. Rides planned, sleepovers arranged. Why every minute of the day was accounted for.

So imagine my surprise when the surgeon came to me after the procedure and announced there was no need for an overnight stay. We could go home that very afternoon.

My first response? No way in hell. You're screwing with the plan.

First there was the fact that my beautiful orchestration was being messed with. I'd have to rearrange carpools, trips to the store and playdates on the fly. Did he have any idea what he asking?

There was one other slight issue. Anyone with a child on the spectrum knows that flexible thinking isn't their forte. Add to that some pretty significant anxiety issues and switching up plans -- especially major ones like this -- is ill-advised. Repercussions are sure to follow.

So when the nice nurse told Twin Sister she was ready to go, my girl blew a gasket. Her worry gene kicked in and she began to fluster. Even after I disclosed her diagnosis and the issues around transition, this rather dense lady kept pushing.

And the more she pushed, the more my girl reacted. I'm sure there would have been some screaming involved if she had a voice. It wasn't until I finally put my foot down and ~~demanded~~ suggested we spend the night anyway, that things calmed down. I know they must have thought I was crazy, but it won't be the first or the last time for that.

So after an uneventful, yet sleepless night in the hospital, Twin Sister is resting in the comfort of her own home tonight. Everything went according to plan.

As for me, I'm going to get some rest before the next round of organized chaos begins tomorrow.

Say Ahhh

noreply@blogger.com (Accidental Expert) — Thu, 10 Nov 2011 18:39:00 +0000

Right now I'm sitting in the hospital with Twin Sister.

No, it's not what you think. This was a planned event and we're nowhere near the behavior health department.

She's in surgery right now, having her tonsils and adenoids removed. I'll be with her all day and will be spending the night.

Children's Hospital in Denver is a awesome facility with all the latest amenities, maybe with the exception of comfortable beds for adults. It does, however, have wi-fi, so I'm doing a little happy dance right now.

The timing of this procedure may suck, but the upside is that it's giving us another unanticipated yet much-needed break from the action. Big Brother has been securely placed at a friend's house overnight. The Little Stinker is playing with one of his favorite friends in the whole wide world. The Big Girl is off doing teenage girl stuff and the Hubby has some downtime to help him fight off a bug.

That leaves me to worry about nothing but getting my girl in and out of surgery and recovery. It also gives me lots of time to sit and think and write.

Meanwhile, our experiment continues. Last night the twins and I had another quiet evening at Grandma's. There was a moment or two when I thought things might escalate, but they were able to pull it together. Thank God. The plan is to keep them both there while my girl recuperates or until we hear from the county. This could take a while.

It seems my theory is holding. Given a quieter environment and some undivided Mom time, we've seen a small transformation in my complicated two.

First, we haven't had a major meltdown since Monday. OK, I know my bar is pretty low, but for us this is a big improvement. I've also witnessed laughing, joking and some smart-assing that hasn't been seen in these parts in a very long while. Well, the smart-assing isn't exactly new, but you get my drift.

And this is giving me much to chew on while I'm parked in the waiting room.

Why the big change? Can Big Brother turn around enough to avoid an out-of-home placement? And most importantly, is it possible to modify our own environment enough to help this along?

These are all questions that are yet to be answered, but it looks like we have some time. I finally got a call back from social services today. We'll have a meeting with all the professionals next Wednesday to try to determine our next steps. No rush or anything. After all, it isn't like anyone's safety has been in jeopardy.

In the meantime, I guess I'll bide my time by serving up lots and lots of slushies and ice cream shakes at my house.

Positive Feedback

noreply@blogger.com (Accidental Expert) — Wed, 09 Nov 2011 21:43:00 +0000

I am happy to report that our first day of our new arrangement went well. Big Brother, Twin Sister and I spent a quiet, relaxing evening at Grandma's House.

Yes, there was initial whining and a few tears shed at the prospect of spending a few days away from home. And the kids almost revolted when they found out that my mom's house had no Internet connection. Come to think of it, I'm having a hard time with that one too.

But all in all we enjoyed an evening of relative calm -- one that has not been seen around these parts in quite a while.

This lack of connectivity to my virtual community will definitely cramp my blogging style over the next few days. But I'll do my best to keep you posted.

I'm just happy that, however small, we had our first success.

Desperate Times Call For Desperate Measures

noreply@blogger.com (Accidental Expert) — Tue, 08 Nov 2011 20:51:00 +0000

First, let me start off by saying how much I love my kids. They are smart, funny and capable of so much.

That said, desperate times call for desperate measures.

Sunday was one of the worst days on record. Tensions have been running extremely high lately and everyone got in on the action. Big Brother and the Big Girl were at each other's throats, almost literally. I had had it up to my eyeballs with Twin Sister's oppositional behavior. Even the Stinker and the Hubby reached their limits.

It became increasingly evident that if we were to continue down this path, someone was going to get hurt. We still have not heard from social services, so are basically on our own until the powers that be make a decision.

So after much soul-searching, I decided to take matters into my own hands.

Enter in desperate measure #1.

My mom fell a while back and broke her hip. She has been in rehab since and her house is now empty. With the help of my sister, we devised a plan that would have me staying at my mom's house with the twins, while the hubby held down the fort at home with the other two.

The premise a simple one. Everyone needed a major time out. Everyone needed a little time to heal. So until a solution has been reached with social services and the powers that be over Big Brother's placement (they still have yet to contact us), this arrangement would give everyone some much needed space.

Our therapist supported the arrangement and came over in the afternoon so we could inform the kids. We made it pretty clear that this was not a punishment, but a chance for us to regroup and recover.

And now for desperate measure #2

As expected, Big Brother did not take the news well. Actually, this might be an understatement of epic proportions. He quickly became agitated and aggressive, threatening everyone and everything in his path.

We had two choices. Let him get his way and calm down or hold the line and ride out the storm. We chose the latter.

When the storm became to great for us alone, reinforcements were called in. The police showed up a few minutes later.

To make a long story just a little shorter, the fine officers got our boy to the local hospital where he was quickly pronounced just fine.

Yeah, I know. Once again we witnessed the Colorado mental health system at it's finest. Our therapist's report, the police report, our report, all ignored as the intake "professional" spent all of five minutes with my son and presumed to know all the facts.

So that brings us back to desperate measure #1.

It's no big secret that my son get's his stubbornness from me. And although the mental health system let us down yet again, there was no way I was going to allow him to get the message that he was off the hook. I also didn't want to give the other kids the impression that their safety didn't matter.

So last night, Big Brother and the Hubby spent the night at Grandma's. Today, I went to the store, packed my own bags and will be doing the same, at least for the short term.

I have no idea how this will play out. That's because I have no playbook and there is no manual to give me step-by-step instructions on how to deal with my uncontrollable, autistic child. We're left to write the book on the fly, and each day offers a new experiment in extreme parenting.

To all of you, thank you for your continued prayers and virtual hugs. I'll keep you posted...

Short But Sweet

noreply@blogger.com (Accidental Expert) — Tue, 08 Nov 2011 05:10:00 +0000

I absolutely love it when the time changes. I mean, who wouldn't like more hours in a day? I usually take this chance to get many lingering projects done.

Unfortunately fate had something different in mind. It was one of the worst day on record with lots of excitement, tons of action. Wouldn't you know it. A day I wish would end happened on the longest day of the year. Just my luck.

Well today we felt the after shocks of the activity, but since I'm just now able to settle down, I am too tired to go into details tonight. So stay tuned tomorrow for the continuing saga....

Autism Support, Colorado Style

noreply@blogger.com (Accidental Expert) — Mon, 07 Nov 2011 03:11:00 +0000

After a couple of days spent trying to take my mind off the issues at hand, I'm back to reality today. And one of the biggest realities is the level of support (or lack thereof) available in my fair state.

Autism support and Colorado are not two words normally found in the same sentence. That's because, as I've mentioned here, this state's track record for supporting its own is dismal at best. My fellow Coloradans are real big on the whole "it's your kid, deal with it yourself" attitude. This is seen election after election, as aversion to taxes wins out over helping thy neighbor.

Just to let you know where we stand:

Colorado ranks 51st in the nation for special education funding
It ranks 50th in the nation for available psychiatric hospital beds
We're right up there as 48th in the nation in funding for autism treatment
Topping it off is the fact that we have the highest out of pocket costs for treatment of autism in the nation

What's more, an autistic person cannot even qualify for the miniscule pot of funds available unless they meet some pretty restrictive criteria. Basically, a person in the state of Colorado is not deemed to have a developmental disability unless they have an IQ of less than 70.

It matters not that many brilliant autistic minds can't remember to eat, bathe or handle other basic life skills on their own. Or that the money spent now is a mere pittance of what it will cost to support the growing number of autistic kids as they reach adulthood -- especially those who, with the proper early interventions, could have been contributing members of society.

Even the legislation that's been introduced to help has been half-assed at best. The Health Insurance Mandated Autism Treatment Act -- HIMAT for short -- was supposed to turn the tables on supporting those on the spectrum. Yet the loopholes are so many, it's barely worth the effort. I also find it ironic that the same government that passed the legislation exempted state and federal insurances from the law. Colorado Medicaid has been so bold as to go on record as saying, "We don't do autism."

Yeah, we got that. The problem is, no one does.

There is no autism support available on the state level. And the waitlist for the federal programs is about 5 years long. That's why we're now at the mercy of our county social services department. The one that normally handles abuse and neglect cases. Yep, that's where we stand.

Alas, we're in a sad state -- both figuratively and literally. Colorado may be colorful, but smart? Compassionate? Even logical? I think not.

To all of you in more forward-thinking places, be thankful. For our fellow Coloradans in similar positions, we feel your pain.

And Now For Something Completely Different...Life Lessons By Monty Python

noreply@blogger.com (Accidental Expert) — Sat, 05 Nov 2011 20:32:00 +0000

Over the years there have been many influential people in my life. Some good, some bad, but nonetheless, all have somehow changed me forever.

Lately I've noticed something peculiar. As things in my life go from bad to worse, certain messages keep playing over and over in my head.

And the source of this inspiration is a surprising one Why, it's my old friends Monty Python. Believe it or not, the wisdom of six chaps from across the pond has done much to keep me going.

So today, with the help of my hubby -- the Supreme Monty Python Aficionado -- I am sharing some of the deep, meaningful insights this irreverent bunch has unwittingly given me:

No matter how bad things get, there's always room to look at the
bright side of life
Some days, its OK to just run away.
Never, ever give up. You can always manage to muster up the energy to
take another hit.
Stick to your guns. After all, indecisiveness can really kill.
How to survive meetings with schools, doctors and other forms of the
Spanish Inquisition.
The finer points of debate and argument.
That it's a waste of time to reason with idiots --especially ones selling parrots.
And finally, that Lumberjacks are sexy beasts.

Most importantly, these cheeky bloats have taught me not to take life too seriously. And how when life gives you nothing but lemons, it's time to go get yourself a good supply of Spam.

The burning question remains. How has Monty Python changed your life?