30 Hours of Chaos

Kaleb's phrase of the day:  "Oh thank you Mason!  Now go get it!"  as he throws Mason's ball to get him to leave his trains alone!  The sad part is, it worked!

At around 1:00 am on September 21, 2010 I went into labor with The Monster Man's baby brother, Mason.  He was born at 2:15am.  Kaleb's diagnosis appointment was just over 30 hours later.  I checked myself out of the hospital - but 10 minutes too late to make the appointment, so my mother had to go in my place.  

From what I can tell, that day was one of the worst of my mom's life.  Until that point, she had never really seen Kaleb in the throws of a bad meltdown.  She'd seen small ones, and rarely in public.  When they arrived at the Easter Seals to meet with the psychologist she was caught completely off guard by the events that followed.  Kaleb immediately went into panic mode, and began to destroy anything and everything in his path.  The Easter Seals were prepared for this, and had set up an area for him, since this had become pretty commonplace at that point.  For them, but not for my mom.  On top of him throwing, hitting, kicking, screaming, pulling hair (his, hers, and the doctor's), and just having the worst episode she had ever seen - a doctor was telling her that he had moderate to severe autism.

To this day I wish so badly that I'd been able to get out of the hospital just ten minutes earlier.  I would give just about anything to be able to go back and spare her that pain.  At the same time - being the first time she'd ever seen Kaleb like that, she really began to understand what I was talking about.  By the time she got to the hospital to pick us up, Kaleb was calmed down, but she was far from it.  

Kaleb's official diagnosis was Moderate to Severe PDD-NOS with some pretty big sensory issues thrown in there for good measure.  After all the time leading up to that day, I wasn't really shocked - but it certainly stunned everyone else that knew him.  

After the first week home with Kaleb and the baby (Kaleb just pretended the baby wasn't there for nearly a month), I began steps to work with an organization called Child Find in order to get Kaleb enrolled in preschool.  While it seemed early to be putting him in school, Early Steps stopped working with children once they turned three, and we needed to get Kaleb into preschool in order to continue his therapy.

This, of course involved more meetings, more evaluations and tests, and more meltdowns.  We had decided to hold off on putting him in school until after the holidays - because life was just too hectic and it wouldn't be a smooth transition (not that there are many of those in The Monster Man's life to begin with).  So, we continued to work with his therapists, make sure that he was happy, and look to the future.

Let the Games Begin...

Kaleb's phrase of the day:  "No!  I'm playing!"  Yeah, nothing productive happening in The Monster Man's world today - except maybe a bath... bubbles:  Mom's best friend :-)

Kaleb's autism evaluation began in the spring/summer of 2010.  He'd been receiving therapy for well over a year, and his therapists and I all agreed it was something that had to be done.  Even if everyone else in The Monster Man's life felt that it was absurd.  Unfortunately, things weren't getting easier over time.  The meltdowns had become more violent, and he'd become stronger.  Me getting a bloody nose wasn't something that happened every now and then - it was routine when Kaleb began to panic.  Concussions?  Yep, had those.  Some seriously injured fingers and black eyes?  I had them covered.  Normally, I would take his meltdowns on with no issue.  We had different methods for different degrees of pandemonium.  Sometimes, the therapy swing I'd had hanging up in the house for months was the absolute ticket.  Sometimes, it was just pinning him down, throwing a blanket over us, and taking slow deep breaths until he began to calm down.  Sometimes it was all out war - him throwing things he shouldn't have even been able to lift - me bobbing and weaving.  

Then there were days when the war was fought silently.  The 8 months of poo-smearing.  Days when I was cleaning his poo off of the walls, floors, toys, bed, and television.  Many times with a putty knife.  Or the time when he body slammed his mirrored closet door and shattered it.  Or getting a hold of a marker somehow, stashing it away, and then coloring on himself, the dog, the walls, and everything else he could get his hands on  the second my back was turned.  Locking himself in his bedroom, forcing me to learn how to pick a lock (this was when the door knobs got replaced).  Stripping naked and running outside when I went to the bathroom - hiding naked in the neighbor's back yard behind a bush while I flew into full on panic mode.  This was when the latches above each door leading outside were installed...

But now the fight was different.  I was pregnant, and couldn't tackle him like I used to.  Now I was worried about containing him for fear of really getting hurt.  And at the same time, things around the house were subtly changing (baby items being brought in, rooms being rearranged, and so on).  Which only escalated his meltdowns.  So, back to the evaluation.  I probably owe the Easter Seals a lot of money.  To replace broken furniture, shredded files and paper, destroyed toys - and many injured therapists.  All through the summer we went to different evaluations, sometimes taking more than three hours (after the meltdown ended, so usually it was an all day affair).  Speech, OT, PT, Behavioral, Psychological... everything.  It was rough.  It was rough on me, and it was way worse for him.

I generally left the Easter Seals in tears - and so did he.  But it had to be done, and I was determined to make sure that it was.  Throughout all the summer, Kaleb also had a major regression.  For a few months I was able to spot him getting ready to panic, and if I said "Buddy... MARCH" he would take a couple of deep breaths, go into his room, go to his safe spot (under his bed for a while, then his closet once I installed curtains instead of doors), shut out all of the other sensory input happening throughout the rest of the house, and gain control of himself again.  It was amazing.  I could tell just by the difference in his demeanor before and after how much better he felt when he realized he was in control of his situation.

One day, POOF!  That was gone.  Just like the snap of a finger.  One day it's there, the next it isn't.  It broke my heart to see how panicked he would get when he couldn't control what was happening.  I hated more than anything that I couldn't fix it.  That wasn't the only regression (poop-casso made an encore appearance for a few months), but it was the most significant.  

We finally had an appointment, on September 22, 2010 to get his results.  He was either getting diagnosed, or everyone was right and I was over-reacting.  I went into labor at 1am on September 21.

Deny, Deny, Deny...

Kaleb's phrase of the day:  "Look Mommy!  It's the Clubhouse!"  (although, clubhouse sounds more like "cook house!).  Mickey Mouse has taken over, when it isn't Scooby-Doo, that is.  I guess we're getting ready for Halloween! 

Last time I wrote Kaleb had gone through a nightmare at the hospital, and I was contacting a neurologist.  I was able to get us an appointment for the following week to go over the results for the MRI, EEG, and address my overall concerns.  So, I packed up our "contingency bag" (like a diaper bag, but bigger, and with a lot more 'keep Kaleb happy and distracted' items.  As well as snacks.  A lot of snacks.) and we headed to Orlando to meet with the new doctor.  

Kaleb did surprisingly well for most of the visit.  Though in great part that was because of all the toys around the room that helped keep Kaleb distracted from the neurologist (good thinking doc!).  After watching (and trying, but failing to interact with) Kaleb for a while, and having me answer a hundred thousand questions, the neurologist asked me a question I never saw coming.  

"Has he had an evaluation for autism?"

Yeah... after I was able to wipe the stunned look off my face, and make my brain stop screaming "WHAT?!" I managed to choke out a laugh.  My response, with the laugh was "Uhhh, no.  You can't be serious.  Look at him!  He doesn't have autism!"  Yes, I was wrong, and yes, I was in denial, but all I could think about was how smart, sweet, funny, and just spectacular he was.  The only encounter I'd ever had with autism was the movie "The Rainman", and I don't even think I watched the whole thing because I never cared for Tom Cruise!

After letting me laugh like a lunatic for a second, Kaleb's new neurologist told me that they found nothing out of the ordinary with his MRI or EEG.  There really wasn't anything to be done by them.  So, I was given a written recommendation for speech therapy for Kaleb, told to get him in to see a developmental pediatrician, and call if anything changed.  Out the door we went - while the part of my brain that wasn't paralyzed by the word "autism" was wondering what the hell just happened.

We went home, and I went to work.  I spent a week calling every single develpmental pediatrician in the state - I started off within an hours drive of us, and ended up calling down as far as Miami, and right up to the Panhandle.  The closest I got was a doctor with a waiting list that was only around 16 months long.  Yeah, 16 months.  You read right.  By the time I called a doctor's office in Jacksonville that was associated with CARD in Orlando, I was in absolute hysterics.  The girl told me how long the waiting list was for new patients and I went crazy.  I'll still be amazed if she could understand even half of what I was saying.  Did nobody get it?  A neurologist told me my son my be autistic - that could not WAIT 16 months!  She promised she would do all she could to get us bumped up the list, but I lost hope with that avenue.  It was more than two years later when they finally called us with an opening (though the developmental ped. is amazing, so at least that's a plus now).

At the same time I was trying to find a speech therapist, and I struggled just as much with that.  Nobody had any funding, nobody could take new kids because they could barely afford to keep the ones they had.  Meanwhile, I'm still telling everyone in the world that there is "Just no way he's autistic.  It has to be something else.".  Eventually (with the help of my aunt, who had wandered the path before I did) I found the Early Steps program, and got Kaleb in for an evaluation.  They not only recommended speech therapy, they recommended occupational therapy.  I couldn't imagine why, but I figured, hey, what could it hurt?  His new therapists came to the house once a week to work with him for an hour each visit.  And they were amazing.  There's no other word for it, they were just amazing.  His occupational therapist probably saved my butt.  

After a few months, she sat me down and very bluntly told me that he had major sensory issues, and at the very least had SPD (Sensory Processing Disorder).  She gave me some resources to check out, and left me to do my research.

It wasn't long before I started to put two and two together.  The more I read, the more I understood.  Kaleb absolutely did have some major sensory issues, but it wasn't just that.  Autism wasn't seeming so far fetched anymore.  At least not to me.  By the time I began to shake my denial, everyone else in our lives decided to hide in theirs.  I was over reacting - I was seeing things that weren't there - I was being over protective.  But the truth of the matter was, I was finally seeing clearly.  

By the time I learned I was pregnant with my second child, I had come to terms with the fact that Kaleb most likely had autism - and I began the process of getting him evaluated.  Since I couldn't get him into a developmental ped yet, a local resource, The Easter Seals, set up the evaluation for me.  That story is one for another day.

Hospital Horror Show

Kaleb's phrase of the day:  "Happy Birthday!"  He's beginning to sound like Frosty The Snowman!

So, where I last left off, Kaleb, AKA The Monster Man, was having what his doctor suspected were small seizures.  We had a bad experience at the emergency room on a Saturday night, but had an appointment on Monday to get him an MRI and EEG.  Kaleb's MRI appointment was at 3 o'clock in the afternoon.  We were told to get there at 9am, and he was to be cut off from food and drink beginning at 11am.  

My mom, Kaleb, and I arrived at the hospital armed to the teeth with all the things we hoped would keep Kaleb happy.  We had his favorite DVD's, his favorite books, toys, cars, puzzles, as well as pajamas, diapers, and other such things.  After filling out the necessary paperwork, we were put in a room on the children's floor.  We spent some time just occupying The Monster Man while waiting for the doctor.  

Everything went pretty smoothly up until the time came to put an IV in Kaleb.  It's hard enough to keep him still, but having a bunch of strangers standing around him while he was laying on a table was not an easy thing to do.  The nurse inserting the IV managed to collapse 4 different veins and ended up putting the IV in Kaleb's foot (which I learned later is unbelievably unsafe).  By the time the ordeal was over, all three of us were crying.  

We had previously discussed our sedative options with his doctor - when Kaleb was just over a year old he had a massive ear infection that landed us in that very hospital twice in one day - it was a traumatic experience, and he was forced to take medication (Tylenol or Motrin, I don't remember now) to bring his fever down - and since then he refused to take any kind of liquid medication.  It had to be in the form of a tablet he could chew, or I had to sneak it into his juice (and if he caught me putting an antibiotic or  Tylenol in his cup he would refuse to use that cup for a week or more).  Since he wasn't allowed liquids, the doctor had agreed to get him a tablet to chew.  When the time came to give him the sedative for the MRI, a doctor informed us that there had been some form of emergency, and they had to give the tablet to someone else, so The Monster Man either had to take the liquid, or they would have to give it to him through the IV which would mean us spending the night in the hospital.

Needless to say, I was both confused and angry - how can a big hospital have only one sedative in tablet form?!  I agreed to try and get him to take the liquid sedative, but told them to be prepared to give him the sedative through the IV because odds were low that he would take the liquid.  When I tried to give Kaleb the sedative he had a gigantic meltdown.  His main nurse soon lost patience, and, along with two other nurses, held The Monster Man down on the bed and tried to force the sedative down his throat.

Kaleb was so determined not to take the sedative that he gargled it when they poured it in his mouth.  Eventually, he had to take a breath, and when he gasped for air, he sucked all of the sedative into his lungs.  He then began to choke, and I snapped.  I grabbed the nurse in charge, (not so nicely) pulled her away from my son, and explained (that's the word I'm using, because it's the nicest one I can think of) passionately that she needed to get out, and stay as far away from my child as possible (there may have also been some threats regarding jobs and law suits, and other such things...).  

After spending what felt like hours calming Kaleb down, he was finally willing to sit in his stroller and watch a DVD.  About ten minutes after his show started, he began to cough.  I could hear his chest rattling and was concerned, so I sat him up.  About the same time, the doctor entered the room and stood in the doorway watching.  Kaleb managed to cough up a good bit of the sedative that he had inhaled, but immediately started to choke on it.  My mom and I were frantically trying to help him breathe, when he started making gagging noises, and threw up all over.  For a few more seconds he continued to choke, until the vomited the rest up.

The entire time this was happening, the doctor stood in the doorway asking what he could do.  My mother finally shouted at him to HELP - seeing as how he was supposed to be a doctor!  He then turned and went to get a nurse (do I even need to express how frustrating this was?).  The nurses then brought in towels and a clean robe to put The Monster Man in - then everyone stood back while my mom and I both tried to calm him down, clean him up, and clean the rest of the mess that had gotten everywhere.

I was then informed that we had two choices - stay in the hospital overnight and try to give him the sedative later, or go home and try again in a couple of days.  Well, I would be damned if I was going to put my poor child through that ordeal twice.  I told them I would try to get him to sleep in the hopes that we could do the MRI anyway.  Eventually we were able to do so.  Watching my small little boy in that big, loud machine was terrifying, but they managed to get it done.  

We were then told to take him home (by now it was after 5pm), put him to bed, but wake him up at midnight, and keep him awake until his EEG appointment at 9am.  Exhausted, shaken, and angry, we left.  My mom went home to eat dinner, and get a change of clothes, and I took The Monster Man home and put him to bed - no small feat after the day he'd had.  My mom came to our house around midnight, to help me stay up with The Monster Man until his morning appointment.  

Needless to say, that was a long night for everyone.  We arrived at the hospital at 9 the next morning, and when we got there the technician said to me "Why is he awake?".  I thought my head was going to explode at that moment.  I responded by telling her I had been instructed to keep him awake.  She then told me he had to be asleep so they could run the test.  So, for the next two hours, I walked The Monster Man up and down the hospital in his stroller to get him to fall asleep.  Eventually, he did, and we were able to do the test.

That afternoon, when we arrived home and I put him to bed, I called a neurologist The Monster Man's sleep specialist recommended to make an appointment.  

And so it continues...

Seizures - In the Blink of an Eye

Kaleb's phrase of the day:  "Mommy!  Ribbit!  Mommy is a frog!  Hi frog!  Ribbit Ribbit!"  Evidently Kaleb has convinced himself that I am a frog, even though he's the one jumping all over the place.

In the Spring of 2009, two major events took place.  The first - Kaleb finally said "Mommy".  I'd been waiting over two years to hear that word, and he finally said it on Mother's Day!  I was so happy to think we were finally making progress.  Then, something else happened to make me question that progress.  I began to notice The Monster Man doing something strange.  He started blinking.  Now, I know that sounds strange, so let me explain.  The Monster Man would be in the middle of doing something; eating, playing, dancing; when out of nowhere he would freeze and begin to blink rapidly.  Then just as quickly as it started, it would stop, and he would pick up exactly where he left off like nothing had ever happened.  

Over the course of a week I noticed him doing this more and more throughout the day and it began to worry me.  The episodes would last anywhere from 30 seconds to a full minute, and I was unable to find any common cause for them.  On Friday I finally called the pediatrician and made an appointment to get him checked out.  

The Monster Man had two episodes during the appointment, and his pediatrician called in two other doctors to examine him - a worrisome event in and of itself.  After having The Monster Man examined for nearly two hours, by three different doctors, and a few hushed conversations outside our door, the doctors all piled into the room to discuss what they thought was happening.  The Monster Man's pediatrician opened by asking me if we would be willing to stay in the hospital over the weekend.  Well, there's a good way to freak someone out!

They told me they thought The Monster Man was having seizures, and wanted to get an MRI and an EEG done.  However, the earliest they could have the tests done would be Monday.  They didn't think The Monster Man was in any sort of danger, but they would like to be able to observe him over the weekend.  After discussing it for a few minutes, I decided not to make The Monster Man stay in the hospital.  The pediatrician made me promise to take The Monster Man to the ER if anything changed, and made an appointment for the tests on Monday.

The rest of Friday was uneventful, a few minor episodes, but nothing new.  Saturday, however was a different story.  Around lunch time on Saturday, The Monster Man brought me his sippy cup and pointed to the fridge, wanting more juice.  I took his cup, and turned to fill it.  When I turned back to him holding out his cup, he was in the middle of another episode.  When he snapped out of it, he looked at me in surprise, and then began screaming.  For almost an hour he was inconsolable, and I could not figure out what happened.  

When the same thing happened a few hours later, I packed us up and headed off to the emergency room.  We waited to be seen for nearly an hour, and when the doctor finally arrived he was brusque, and pretty rude.  I explained what had been happening, and that The Monster Man's doctor insisted we go to the hospital at the slightest change.  The doctor barely looked at The Monster Man, and cut me off while I was explaining what had brought us to the hospital.  

He told me The Monster Man was probably having seizures (well, I already knew that), chances were they would never figure out why or be able to stop them, but they really weren't a big deal, we would just have to learn to live around it.  I was stunned.  All I could think was "What kind of doctor ARE you??".  He then told me to go see a neurologist, since The Monster Man didn't seem "normal" and should be checked out.  By the time we left the hospital I was fuming.  But that was only the beginning of our problems with that particular establishment.  

Random Intermission

I started this blog with two main objectives in mind - the first was to tell The Monster Man's story, the second was to talk about life with autism.  With this post I may be straying a bit, though it certainly still relates to life with autism.
I, as a mother of an autistic child, am SO beyond tired of (well meaning) people in my life asking about things I did or didn't do while pregnant; asking about my diet and the diet of my children; asking about my views on vaccination; or suggesting absurd 'causes' for The Monster Man's autism.  So, I will sit here and state my stance, maybe vent a little, and feel better for it!
No, I did not take prescription medications while pregnant (unless you want to blame my prenatal vitamins).  Yes, I vaccinate my children.  No, I do not believe that food dye plays a part in my child being who he is.
I firmly believe that The Monster Man is who he is because his brain formed a little bit differently.  Do I think there could be a bit of an environmental influence?  Of course I do.  Do I think there is a genetic influence?  Absolutely.  Do I think I could have done something different to change the outcome?  No, I absolutely do not, nor would I if given the opportunity.
There are too many people in the world who don't do enough thorough research and just jump up every time they see the word "Autism".  They mostly mean well.  They mostly think they are being helpful.  As a parent, it is NOT helpful.  Don't you think I've done the same research?  Don't you think I've read the same article, the same study, looked at the same results?  The first thing I did when a specialist mentioned autism was laugh.  The second thing I did was research.  The internet, the library, other doctors, therapists, and specialists.
Yep, welcome to the vent portion of the blog.  I honestly appreciate the well meaning questions, comments, concerns and emails.  I am grateful that you care enough about my child to pass those on to me.  But every now and then, yeah I've had my fill.  Right now, while finding the cause for autism is a huge goal, and finding the cure for autism is a bigger goal - my main focus is life with autism NOW.  How do I make life for everyone involved better?  How do I make it less stressful?  How do I make it less confusing?  While the big picture is the cause of and cure for autism- the real problem for me at the moment is the awareness of the people in my community, the understanding of the important people in my life, and the best way to show my love and appreciation for The Monster Man and the 3 other people (yeah, I count myself as one of the 'other' people), and 1 dog; in my home.
My concerns are not about vaccines causing autism - it's about the fools who are stating autism as a reason not to vaccinate their children against DEADLY, CONTAGIOUS diseases.  Nope, not worried about food dye because it hasn't changed in the past 50 years, yet autism has.  Nope, not worried about prescription drugs because there are too many to count, and it is absurdly unlikely that every woman on the planet that gave birth to an autistic child was taking the exact same medication.  See my point?  Either focus on the autistic needs of your community, or look at the numbers on a large scale.  This is becoming an epidemic.  It is more prevalent than juvenile diabetes, childhood cancer, and childhood aids combined.  Yet it only gets 5% of the government funds they do.
Stop worrying about the vaccines your kids need for school, and start worrying about the kids in your community who are getting laughed at, picked on, or bullied.  Instead of focusing on things you cannot change yourself - look at the things you can.
Autism is not a death sentence.  It's just a new pair of glasses you have to wear.  And while they may not always be rose-colored, they do show colors you never would have seen otherwise.

How The Monster Man Got His Name

Kaleb's Saying of the Day:  "Give Mouse Cookies!"  We have read "If You Give A Mouse A Cookie" probably 30 times today.  Early on I came to an epiphany:  Kaleb is like the mouse, and I am like the poor little boy behind the mouse cleaning all of the messes!

Today I'm going to tell you how Kaleb got the nickname "The Monster Man".  Kaleb's first birthday party was incredible, so many people gave him such wonderful gifts - I felt like a very lucky Mommy.  We held his birthday party almost two months early because Kaleb's dad was going to be overseas, and I wanted him to be able to go to Kaleb's birthday party.  Since Kaleb got so many gifts, and was too tired to open them all, I kept some of them wrapped in a closet, to give to him as his real birthday approached.
One day I brought out a present and gave it to him to unwrap.  It was from a good family friend who also made him a beautiful quilt for his baby shower.  It was a little red barn with four little animals, and some letter blocks.  Kaleb seemed to be really excited about it (in fact, he actually still plays with it to this day) - what I didn't realize was that he wanted the box it came in.  When I took the barn out of the cardboard, and got up to put the cardboard in the garbage, Kaleb had his very first meltdown.
Boy did that take me by surprise!  Up until this point Kaleb had thrown a few minor fits, but nothing like this!  He got all red, screamed for about two minutes, then knocked the barn over and continued screaming.  I gave him the cardboard, but by that time the meltdown was in full swing and there was nothing to do but let it run it's course.  The screaming probably lasted a good twenty minutes, but as any parent knows - when a child is screaming like that, each minute feels like an hour.
Then he just stopped.  Just like that - it was almost as if he flipped a switch in his brain and went from total chaos to total calm.  He went over to the barn, put it upright, and sat opening and closing the door for nearly an hour.  I called my mom, and exclaimed "Kaleb just had a monstrous fit!"  She asked what happened, and I told her.  She said something to the tune of "Well, that's different.", no kidding!
From then on, I started to notice a difference between Kaleb having a normal fit, and Kaleb having a meltdown (what I was by then calling Monster fits).  With a normal fit, if I gave him what he was screaming about, he'd be perfectly fine, but with a Monster fit once it started, there was no stopping it until he decided he'd had enough.  Over time, the Monster fit name turned into Kaleb being The Monster Man.  Whenever a meltdown occurs, it's The Monster Man rearing his head, it's Kaleb - it's just not Kaleb!    Of course, I had no idea how bad a meltdown could get, that came later.