Sunday, August 24, 2014

Honey, Why is your mouth Glowing?





Many people do not know that autism can come with a variety of other disorders.  In fact, the autism diagnosis alone just lets us, the doctors, parents and therapists know that there is a social-emotional disorder, but tells us little about the real nitty, gritty of what each individual suffers from.  Now, with the new diagnosis tool that's available we can have a little better understanding of what each person suffers from.  For instance, my oldest has moderate to severe autism - not affecting intelligence, with OCD, ADHD and sensory disorder characteristics.  My youngest has moderate autism - not affecting intellegence with ADHD, sensory disorder, moderate OCD and pica.  There are many other disorders that can arise with autism that we are lucky as of yet to not have experienced, like autism which affects intelligence, seizure disorders, mood disorders and so many others, but as you can see, no two people with autism are alike due to the wide variability in how it can effect each and every person.  Autism is like a fingerprint, no two can ever be alike.  And so when you have two kiddos both with autism in one house, each having their own difficulties it can be a little overwhelming....and a little disgusting.  

As I mentioned above my little one had pica.  If you are not aware of what pica is, its when you eat non-food items.  It is often very well documented in pregnant women who are lacking nutritional elements and hence have a desire to eat things like dirt and clay to gain the vitamins and minerals.  It is not so common in autism, but hey, normal is not what the house of crazies likes to do anyway.  And although all blood work shows that he is not lacking in anything, he still will munch, nimble and down right each pretty much anything that is not nailed down to the floor.  And so my little one likes to eat things that are well.....weird, disgusting, and unusual to say the least.  So why keep in this little treasure a secret when I can share our stories that would even make Andrew Zimmerman from Bizarre Foods cringe with disgust.

Now I can list all the unusual things that Mr Muncher eats, but what fun would that be, so instead I will give you a little story with our top most yucky moments.

#3.  Since I just wrote about our new addition of chickens it seems fitting that one of our top stories involves the chickens.  Now you may not know that chickens love bugs, but they do.  And in fact, you can buy them dried meal-worms as treats.  It didn't take to long for our little one to find the bag when mom and dad weren't looking and taste one for himself.  Unfortunately for us, he absolutely loves them.  In fact, he loves them so much that we have to hide the bag and keep it up high so that he can not get them.  And so when we are out feeding the chickens we have to do it when the baby is not around or he will eat their food and treats.  You probably can see where my story is about to go here in a a sentence or two.

So the other evening when we thought the coast was clear, we got the bag out and started to give the chickens the meal-worms as a night time snack.  All of a sudden, the kitchen door swung open and the baby immediately saw the feast on the ground, yelled, "Oh boy!" and went running towards the chickens.  As he dove onto the ground to get his fair share, he was pushing the chickens out of the way who were trying to protect their much beloved treat.  My husband grabbed the baby by the waist who was bent over shoveling the meal worms in two handed and now crying because daddy was removing him from his too beloved snack.  As daddy spun the baby towards me, my cute and adorable toddler had a worm hanging out of his mouth and in the most graceful way possible....I nearly hit the ground from passing out.

#2.  We love being outside  and especially love to go for hikes and so it is not that surprising that as we are out and about our youngest does his own version of buffet feasting.  He has been known to eat dirt, grass, sticks, rocks and leaves on most of our adventures, but by far the most disgusting is when we come across animal ummmm, presents.  That's right, our number 2 most disgusting pica moment comes when our little one found a pile of deer droppings and decided that it look like a nice hike snack.  When we hike the baby loves to be in the lead and we let him go a good bit a head of us because its the one place where he can be independent.  So when he bent down we really didn't know what he was doing until we got up on him.  When we did actually see the action taking place, yelling and screaming took place, a race to get to him and the scrubbing of his tongue with wet ones.  I was so scared he was going to get some disease and am still convince that our son needs to be wormed at least twice a year.

#1.  For me by far, the most disgusting thing our son eats are stinkbugs.  He loves them.  It makes me nearly vomit every time he comes and sits on my lap and a whiff of stinkbug comes from his mouth.  But it has become such a regular occurence that is cannot take the #1 spot.  So instead, #1 came at the beginning of this summer when the nights were getting longer and mommy and daddy let boys stay up later to catch lightening bugs that were beginning to come out.  This was the first year that the baby got the hang of catching them and we showed him how to open his hand and blow and watch as they fly away.  The boys were having a great time running around the yard catching bugs and it gave Daddy and I some much needed time to sit down and relax.  So when the baby came running towards us and there was something on his lips I really didn't think anything of it until I realized that that something was glowing.  "Hoeny, why is your mouth glowing? Did you eat a lighting bug?"  Next thing, our baby went running squealing in delight and we were quickly on chase.  When we finally tackled him, not only were his lips glowing, but so were his teeth and tongue and so it was undeniable...my baby ate a lighting bug and was now glowing.  Silver lining here....at least we could see him in the dark.

And so, there you have it.  Our most disgusting pica moments!  If anything tops these three I will be sure to post, but lets all hope that I don't do that anytime soon.  And so watch out Mr Zimmerman...my baby is coming for your job!



Thursday, July 31, 2014

One little, two little, three little chickens. ..

After 35 years, I still need to wear a dunce cap every now and then.

As stated in the last post, this has been the summer of unfortunately situations.  Everywhere we turned, in every part of our family, our lives have been touch by bad news and bad vibes.  To say the least, its weighed on us all and affected us all.  If you are a family member reading this, you know what I'm talking about.  If you are a stranger out there in cyber world, all I can say is cancer, alcoholism, mental health issues, autism woes, teenage pregnancy, and just plain ole' bad luck wrapped in a perfect lil' package, tied neatly with a bow, was throw at us and exploded in a matter of months.  (And there was no receipt to return this nice gift....I looked.) We are surviving, but boy it has not been fun.  And when you are down on your luck, you start to look at things in a whole new light.  If you have been  down this path then you know exactly what I'm talking about.  Those moments when you look out at the world and wonder why everyone else is moving along like nothing happened, when your whole world just got turned upside.  Those moments when you wake up in the morning feeling okay until you remember the event/s that just happened the day before and your stomach drops yet again.  Those moments that just take time to heal and that supposedly make us better people in the end.  These are the moments that make you slow down and analyze life in general....and makes you say hmmmmmm.

During those hmmmmmm times, I decided that I needed a hobby.  Something to take my mind off of everything.  And after some soul searching I found just what I was looking for...chickens.  Yup, chickens.  Bet you couldn't have guessed that one, it was a shock to my family to say the least, but it was exactly what I needed. And who knew how amazing they could be? They are something that are mine (although my oldest also loves them and takes care of them), something they makes me laugh (seriously, these girls are hilarious) and something that provides a need (eggs anyone).  And while this blog is also my hobby, I am not forced each day to take time out to write on it, where as if I don't take the time to feed and nurture my flock, their feathers will get ruffled in not so nice a way.  And so everyday, I have to do my hobby.  I have to stop from the crazy and go outside, in the fresh air and take care of my chickens.  And so far its been awesome and I would recommend to anyone in a slump or going through a rough patch to pick up a hobby.  And although I highly recommend chickens....they may not be for everyone.  And as I sit outside, even now, enjoying my one hobby and watching my other hobby peck away, it makes me think of what other things in life could be simpler.  More enjoyable.  More peaceful.  More....well hell, fun!     

We all sort of put fun on the back burner when life gets crazy,  but fun is what reminds us who we are,  what we live,  and what life is suppose to be like.  Look at little kids.   They run around life happy and having non stop fun,  because they are not weighed down with all the shit. And so when life gets crazy,  I'm going to go out have some fun, change my life to make it better and then make an omelet in the morning. 

Tuesday, July 1, 2014

When life throws you lemons the size of watermelons.

I haven't written in a while.  Actually,  a very long time.  Life got too complicated and to stressful to even get a chance to vent or rant.  I have been lost in a sea of stress and overwhelming dread and when life seems to throw these watermelon sized lemons at me I know one thing. ... it's time for a change.

I've always believed that the world seems to send you little messages when you are doing the wrong thing.  Drive to fast for too long and you pass a really bad accident that makes you pause. Next,  maybe you get a ticket to warn you to slow down.   Keep if up and you will probably wreck..... life warned you.   Well my life seemed to be speeding by to fast with my family nearly being the victims in a horrible stress filled accident.  There have been many,  many tickets along the way that I sort of brushed off until the big one hit a few weeks ago.  Will I share,  maybe when the times right but what I can say is that the heard you universe loud and clear.

And so it's time for a change.   Details of that to follow soon.   Many more posts to come as well.  And trust me. ...I have some doozies.

Hope I haven't lost to many readers in my absence and hope this post finds you well!   Keep checking back for the house of crazies will be returning shortly!

Thursday, February 20, 2014

Delusional, Dreamer or a Delusional Dreamer?




I have to say that I am writing this in a daze.  These last few weeks have been crazy busy between doctor's appointments, therapies, me starting back to work/school at WVU part time and many other things in between.  It actullay feels like time has passed on around me as I have stood still.  So many things I have on my to-do list are still there: to do.  It's frustrating and mind boggling all at once.  In my head, when I make plans "to do" whatever, it makes perfect sense and absolutely achievable, but in reality, is it?

This issue really came to light today when I had a nice meeting with my doctoral adviser this morning.  She wanted to discuss my time line to finishing up my PhD.  (If you didn't know I have been working on it for the last 5 years in the field of geochemistry.)  When I entered into the doctoral program I was a single white female with a dog.  Five years in, I'm a married mom with two kiddos on the spectrum, three dogs and two cats.  Needless to say, my life has changed.  And with that comes the reality that maybe I can't finish this doctoral thing.  Many, many times during these life changes I have come to a cross roads with my education:  should I complete it or should I wave the white flag?  Each time I say, yep, I am going to do it!  I am doing this for sure!!  I CAN do this!  I love this stuff and I have done so much and achieved so much, how could I stop now!  My husband says do it!  I will support you!  My family the same.  Yet days, weeks, months go by and I get nothing accomplished.  So am I delusional?  Am I just dreaming of another path my life could have taken?  Will I just not let go of my life before? Or can I really do this?

Now if you are pumped up on the" if you think it you can achieve it" jargon, then yes, I can do this.  But let me shed some light on reality.  Reality is five out of seven nights a week I get less that four hours sleep.
Seven nights of the week I get woken up at least twice for some reason.  Reality is my boys never stop.  And I mean NEVER STOP MOVING.  If you are a parent of an hyper active spectrum kid, then you get this.  If you are not, give your toddler a 2 liter bottle of Mountain Dew, with a huge chocolate bar, and two cans of Red Bull and you got yourself a hyper active aspie.  Reality is mom is main runner in the house since I only work/school part time, and hence is the doctor/therapy/appointments driver.  Reality is I still have clothes that have been dirty since Christmas that still have yet to be washed.  In essence, I can't keep up with life, how can I possibly finish my dissertation?  I have to be delusional.

And I think I am.  Actually, I think I'm a delusional dreamer, because today I heard myself say, yes I can do this, yet again.   Do I believe it? Sort of.  Does my adviser believe it? Sort of. It's just I have been saying it for so long and time keeps moving on and yet again, I feel like I, myself am standing still. It would be a dream to finish but is it really possible now?

The truth is I set out to do this education thing in what feels like a life-time ago; when things were a little easier (actually a lot) and there were less demands on me.  Now its different.  Before I planned on going to a school where I could teach and do major research, publish awesome papers and be a "rock" star scientist.  Now, I doubt I will be able to work full time for many, many years and would have to probably choose between research or teaching.  And so as I went through my day today in my zombie like tired state, I kept thinking of this meeting in the back of my head and wondering if this is even a reality or a dream that I need to give up on.

And so I asked myself this question: What would Oprah Do?  Yep, good ole' Oprah.  Don't laugh, we are the graduating generation from the school of Oprah.  When I asked myself the Winfrey question, I pictured myself on a couch next to Oprah answering her amazing "aaa-haa" pivoting questions that would let myself come to the right decision.  She would help my find my reality.  My zen.  And when I was done with my interview I would look into the cameras and say.......

I'm an idiot.  I am a delusional idiot, but I am pushing forward.  I am going to trudge through this as un-pretty, as un-organized and as un-timely as it is....darn it, I'm doing it.  I'm not giving up until they literally kick me out of the program and say, enough's enough.  I set out to do it and I'm going to show my kiddos this mom is awesome.  I think this sadistic, merciless dream, that I have started and am determine to finish, has quickly developed into something much more meaningful than a degree.  Basically, its turned into a big ole' middle finger to the obstacles that many times made me think twice about finishing.  It will be a shout out to autism to say, take that autism.  This family will take you on and laugh at you as we continue on in life successfully.  It's a "how about that" to all those who think that I can't, won't, or am stupid for thinking that I can do it.  And it will be a major, major victory for me to do something for just good ole me.  If I never do anything with it afterwards, its okay.  I still did it.  And so delusional dreamer I may be, but its what I am sticking with for this moment.  And fingers crossed, some margaritas down the hatch, and a whole lot of hope, I will someday soon I will be writing a victory speech on here.

And maybe when I'm done, I'll make the kids call me Dr. Mom!  ;)


Thursday, January 23, 2014

So we are not a family of Asperger's and bipolar??



If you remember back to your high school science days (sorry to make you do that) you may recall some fun loving terms like theory, law, and hypothesis.  These terms that we had to memorize and regurgitate on a test were an attempt to get us all to understand one basic concept; Science if forever changing and constantly evolving.  There are only a few thing in science that we think of as a Law, or something that will not change with time.  But these things are few and far between as science advances and integrates its disciplines.  This evolving process is not just true for chemistry, physics and geology, but for medicine too, and with that come some confusing diagnoses, a non-stop trail of different doctors appointments, and the notion that you need to keep an open mind if your family member has a chronic issue. 

Yesterday, I took my son to a leading group of doctors in the Pittsburgh region.  I took him to the Autism Center of The Children's Institute in Pittsburgh which is an affiliate of UPMC Children's Hospital and works in conjunction with multiple universities including University of Pittsburgh, Carnegie Mellon, and Stanford to name a few.  As with any doctor, if you Google the name of their leading physician, Dr Faber, you will see a plethora of love/hate articles about him from multiple different sources.  You will see some people swear by him and the practice and others who swear he is the devil in disguised.  I can't tell you why that is, but I wanted to do is to tell you why we decided to try it out, our experience, and some information that we learned. 

Dr Faber's center is a team of medical doctors that tries to address autism from every angle possible.  They do things like genetic testing, auto-immune responses and processes, brain structure, nutrient levels in the blood, heavy metal concentrations in the blood, overall health and a magnitude of other things. The idea is that autism, like many other conditions, is not just a "mental health" brain issue.  It's a fully integrated disorder that can be multi-faceted.  What the hell am I saying?  Well, we parents of autistic kids know that our kids can be very, very picky eaters (Shout out to Operation IFO).  So then, maybe they are not receiving all the key nutrients they need to have a healthy immune system.  If they do not have a healthy immune system, then he can have under lying illnesses like runny noses, sore throats, etc that can then make some of the symptoms of autism highlighted.  In other words, everything interplays and is connected in the body. 

This interacting thought process completely make sense to my husband and I.  As geologists, we look at the geological processes as open systems that are influenced by everything.  For instance, the continents move, this affects the ocean currents, which affects the weather, which affects the erosion rate, which affect the continents moving, so on and so forth in a cyclic pattern.  So for us, addressing autism in this manner is a no brainer.  Are they trying to cure Autism? No.  They are trying to better understand all the process of the body that are being affect and address them so that our kiddos can have the best chance possible.  This is the why we decided to give this place a try.  Because it was the only place we could find that looked at autism in this light.  But with every positive there is a negative, right?

Pittfall...there is a nine month to a year waiting list to see a doctor in this center.  Why?  Well because they are in such high demand and because they literally are not like any other doctor's office I have every been to. Each appointment is slotted for two hours.  That's right.  You will be in their office for at least two hours and if your appointment goes over because you have questions or something else comes to light, do worry.  There is an hour gap between appointments for just this reason.  Tell me the last time you saw a doctor that did that.  But of course that means they can not see as many kids in one day.  But for me that's okay.  It means that they really get to know you and your kiddos and your family.  I can tell you that I did get our appointment in four months though.  I managed this because you can get signed up for their cancelation list, which I did.  If another family has to cancel then you can take their appointment if the time works for you.  I also called every other week to see if there was a cancellation, and sure enough I happened to call and there was a cancellation that worked for us and in we went.

The other reason as to their long waiting list, is much like our family, if you have a family with multiple kiddos on the spectrum they try to get them all the siblings in to see them within a month time frame.  That way all of the offspring with be receiving therapy/treatment at once and to not offset each other.  They feel that if one is getting help and another is not, then behaviors, illnesses, etc can be transferred back and forth.  Kind of makes sense, right?

Another pitfall, which is truly all in how you look at it, is they sort of expect you to follow through with everything they want you to do.  This can be a wide array of things like blood testing, MRIs, OT/speech therapies, wrap-around services, ABA therapies, diet changes, supplements, etc.  If you don't then they really can't say what they feel like the whole picture is being portrayed.  For us, this makes sense too and is no problem but for many posts I have read to other families it is too much.

So that is who they are and why we went....so what did we learn.  Actually, its too much to state in one blog and I will continue to write about things as we go, but I first want to share two huge things that were unraveled for us yesterday. 

If you are in the autism community, I am sure you have heard of the new diagnosing tool DSM-V or DSM-5 changed its criteria for diagnosing autism and the reasons why people love it or hate it.  This new system eliminated Asperger's, PDD-NOS, classic autism and other such varieties of autism, instead there is only autism.  Just one big ole classification of autism, with a classification of either mild, moderate or severe.  If you are like me, this whole notion confused the hell out of me.  So, my son/sons no longer have Asperger's?  What does this mean and why then does he have this long list of other thing under his autism diagnosis?

Thankfully, this was explained in detail to me yesterday so I can fully understand my son's condition.  Why they changed it was in a attempt to address that each kiddo with autism is completely different from the next.  One might have sensory issues, the other not.  That in essence they are trying to eliminate the cookie cutter approach to the treatment of autism because it doesn't work.  Just because one child as Asperger's doesn't mean that he will have sensory issues and vice versa.  So instead, based on verbal standings, social interactions, obsessive conditions, and other such things, they can diagnose autism and then state the underlying conditions.  For instance, my oldest son has mild autism, with tendency for ADHD, obsessive compulsive, sensory issues, and high cognitive ability.  Does he have ADHD, no not necessarily, but this is how his autism expresses itself.  Does he have obsessive compulsive disorder, no, but his autism presents like that.  Advantage to this system, that no matter where my son goes, to this family doctor, to his OT specialist, to his school, they will know exactly the things that affect my child with one diagnosis, where before they just knew he had autism and figure out the others stuff on their own.  Once it was all explained, it made more sense I honestly understood what autism looks like for my child better than I did before.  I wanted to share this with you because I figured I couldn't be the only parent out there that was confused by all these changes.

The next thing that was extremely eye opening to us was that my husband may not have bipolar disorder.  A yeah, that's right, he might have autism and in fact it is quite likely that he has had undiagnosed autism his whole life.  Part of the process that this center does in genetic testing.  Now let me explain there is not a gene for autism, but instead there are genetic conditions that can really be expressed when autism is found.  For instance, there might be a deletion of genes that is hereditary that causes the body to not produce melatonin, certain hormones that control pain and fatigue and other things like that.  My son has NEVER been able to sleep for more than two to four hours before we started to give him melatonin.  He can run non-stop for hours and never get tired, and has an extremely high pain tolerance.  Remember the knife cutting stuff?  All these things can point to the fact that get might lack certain genes that make the body produce the hormones to allow his brain to recognize he is tired, sleepy, etc.  So what does this have to do with my husband?  Well, if it comes back that he and my other son have this deletion of genes, then it was passed down from one of us.  In adults, this deletion of genes with autism causes for a "bipolar" like expression.  Extreme uncontrollable anger, lack of sleep, obsessive nature on certain things almost like a mania, because the body is not producing the correct hormones that it needs to tell the brain what it should be doing.  And in undiagnosed adults, a high percentage of them are miss-diagnosed with bipolar or manic depression.  What?  That's right, it is extremely likely given my son's symptoms that if he lack these genes, which were probably passed down from my husband who struggles with the same issues, and more than likely my husband also has adult autism.  Now, they are NOT saying that autism is genetic, well not at least entirely.  Having the deletion of these genes with some other factors probably allowed the autism to be expressed.  Confusing, right?  It took the doctor an I about ten minutes of round and round questions for me to get this completely understood, so don't feel bad.  But the big deal for us is, after a few short questions my husband's bipolar disappeared and the recommendation of him to be diagnosed with autism happened.  In other words, I walked in the doctor's office with a blog name that made sense and walked out with a blog name that's one big fat lie!  And for us this makes sense.  I can't tell you how many times we have talked about how much my husband is like the boys or the boys are like my husband, we just never knew the whys and how's of it.  Now we are unlocking those and might have some really awesome answers shortly.

What a day!  It was not what I was expecting on multiple levels, but we walked out with a positive experience and have already gotten our baby an appointment to see them soon.  Whether you believe in this stuff or don't, its always good to know what's out there and to keep an open mind, so I will continue to share things we learn on this journey.  I didn't want to include in all in one post, but I also got a good list of dentists who are specialized in kids with autism around the Pittsburgh areas that I will post and share, a detailed lists of genetic tests that can be done and all the other things that we are learning about brain structure, etc.  Knowledge is the key to anything and what's knowledge if you don't share it!

So about that my blog name....we can't decide to change it or keep it, but I can tell you one thing, margaritas therapy in my home is LAW and isn't going anywhere!

Wednesday, January 15, 2014

If one, then why not two....



I have always been one of those people who think if you have one of something then why not just have two.  I really have applied this concept seamlessly through all aspects of my life.  If I have one chip, why not two.  If I have one dog, why not two (to keep each other company of course).  If I have one cat, well two has to be better...it worked for the chips and the dogs.  So then when it comes to autism if I have one with it, then why not two. 

For a couple of months now we have noticed a few things about our baby that have been a little bit of a red flag.  Most of the time, we did exactly what we did with our aspie, we blamed it on anything we could think of.  Oh, its just the terrible twos.  Oh, he didn't sleep well last night.  Oh, he must be hungry.  And every other excuse you can think of.  But as the excuses started rolling of my husband, our parents and even my tongue, I felt like deja vou all over again and I knew I had to start looking at the obvious.  Fact was, baby was showing signs of autism.  Fact was, our in home therapist saw it and helped us in her ever so sweet way by putting up with all of our "is this normal" questions and helping us get our heads wrapped around the possibility of having two on the spectrum.  And although one would think that since we already have one aspie, then it wouldn't be too emotional with getting the other one diagnosed.  But to be truthful, it was harder. 

Unfortunately and unfairly we just assumed that our baby was going to be the "normally" one.  We took this on faith because the original doctor that diagnosed our aspie told us that having another aspie is like winning the lottery, chances are slim to none.  (But now we know that its actually the exact opposite.  Chances are higher if one boy has Asperger's and the younger siblings are boys.)  And so to see our baby start to struggle and do "odd" things was actually unbelievable at first.  "But the doctor said it was really not a chance", when we would question something.  And "he's just mimicking his brother", when we would question something else.  It just can't be.  It just can't.  But it was.  And really the things he was/is doing was undeniably happening.  Here's a list of a few so you can understand why it was so glaring to us even when we wanted to be blind.

  1. Every morning he wakes up immediately wants to get dressed with his snow boots, then go into the bathroom while I get ready to line up lotion bottles in a basket on counter.  Then he lines up the toilet paper rolls.  Same routine everyday, never changing.
  2. He has no interest in toys except for trains.  And he only builds them and rebuilds them and pushes them around.  Other toys he just throws or ignores.
  3. He eats anything and everything.  Pencil erasers, stinkbugs, springs, marker tips, toys, etc.
  4. He hates loud noises. 
  5. He cries uncontrollably if something he watches on TV goes off.  When I say uncontrollably, I mean for hours on end asking for the same show.  Tantrums can last up to 3 hours until we give in or I take him for a car ride.
  6. He is the clumsiest kid I know.  He falls walking.  He is so used to us asking if he is okay that he states, "I'm okay!" before we even ask.
  7. He is extremely smart.  He is two, knows his colors, shapes, body parts, alphabet, numbers, trains, and is starting to read.
And so when it was time to be diagnosed, when we couldn't deny it anymore, I fell into a bit of a depression.  I didn't know how I was going to do it.  I didn't know how my husband, our family, and our aspie was going to handle it.  And the idea of ever being normal just went flittering away.  But then I started thinking, what the hell is normal anyway.  This is our normal.  When you know no different it is your normal anyway.  And we handled anything.  We got through worse, we can get through this too.  And so, I started feeling better.....oh and the anti-depressants I got put on probably didn't hurt either. 

And so, if one, then why not two......