Autism Awareness

A parents worst nightmare: having your child die before your own death.  It's the natural sequence of things and doing the opposite goes against the grain. I  can not imagine the severe unquenchable pain, even if the child is no longer a child.  However, for parents with a child with special needs or special abilities, we sometimes hope for the opposite.  I know that as Aiden's mother I am the only one able to provide the care and understand he needs.  My worst nightmare is that I will pass before him, no matter his age, and he will end up homeless, abused, neglected, taken advantage of, or institutionalized.  I'm not saying I do not hope he lives to be 80 years old. I just hope that I am able to be 100 or always at least 20 years older than he is for as long as he is.

And to this end my reason for everything I do revolves around me being around longer (i.e running my ass off and eating right), providing for him should the worst happen (i.e nursing school, continuing my education, eventually putting moneys aside for his care).  We had an exercise in ICU class the first day, in which we had to write down all the reasons we chose nursing school.  It was supposed to be 10 reasons.  I came up short with only 6, because my reasons have more to do with providing for my children and making sure Aiden is taken care of after I am gone.

Its really easy for many to say "Well, just make sure he knows how to take care of himself." And while that is the big picture aim and focus, the extent to which he will be functional enough to take 100% care of himself is unknown. His progress is our only indication of possible independence and to what degree.

This leads me to a few misconceptions about Autism. 
1. A child with Autism doesn't have a "look".  Its not something you can see from appearance alone. So saying "Well, your child doesn't look autistic" has no real meaning and is not comforting.
2. "Give me a few minutes with him and I will straighten him out."  Contrary to popular belief, Autism can not be spanked out of a child.  Usually techniques of working with a child such as spanking, yelling, taking something away, will usually not work in a child with autism.  It may, in fact, create a bigger problem.  When spanking Aiden, he actually thinks you are trying to kill him and will react equally aggressive back.  He is extremely sensitive to sound and yelling may cause him to become frustrated and react aggressively.
3. Another popular belief that is untrue comes from the idea that children with Autism are retarded.  My son's IQ was tested in two ways, once with verbal instruction, second with out verbal instruction.  He scored 60 on the verbal instruction IQ test and 110 on the IQ test with out verbal instruction.  Meaning my son is not "mentally retarded", he does have problems with communication.  That is not to say that in the most severe forms of autism, mental retardation my accompany the condition. However, on the whole it is two different impairments.
4. Another popular theory is that autism is created out of an unloving environment, in which the parent does not pick up or interact with the child from a very young age.  Of course as a parent, I would naturally disagree, but regardless of what you think about my parenting abilities, autism is not just a behavioral issue.  Those with autism have other physical symptoms to include intestinal distress, seizure disorder, and sleep dysfunction.

So what is autism:

Autism is a spectrum disorder that affects the way the child perceives the world around them and the way they interact with others. (Autism Speaks, 2011)  Many have trouble being able to think about what another person is thinking.  This is why having the ability to lie is actually considered a milestone and many parents jump for joy (secretly) the first time their child lies to them.

Sensory dysfunction is also a characteristic of autism.  I call this Aiden's special abilities or super abilities.  Aiden has very acute hearing and as a young child the ringing of a bell would cause him to cover his ears.  He also is acutely aware of smell.  He would at a younger age lay down to smell the floor after I had mopped.  He is the first person to notice an unpleasant smell and he may become angry.

Ritualistic behavior and repetitive behavior are also Hallmark signs of autism.  Aiden would spend hours watching opening and closing the gate to his favorite toy castle instead of playing with the toy men that came with the toy.  Another one of his favorite things used to be running a car back and forth on the floor over and over again watching the wheels move (the other name for this behavior is stemming).

These children do not usually grow out of autism and then will be considered adults with autism.  The goal is to progress up the spectrum as much as possible.  Its not so much the stage at the time of diagnosis, but the progression exhibited by the child.

I promise I am going to tie in running and here is how.  I urge everyone to support their local chapter of the Autism Society.  Funding across the nation is being cut from class rooms everywhere, to include those that specialize in Autism.  Research relating to Autism receives only 5% of the funding compared to other less prevalent childhood disabilities. (Autism Speaks, 2011)

This month is autism awareness month.  I encourage you to go to the autism speaks website and lean about autism.  Be understanding of those with Autism (if you see a child throwing a major tantrum, laying down kicking and screaming on the supermarket floor and the parents look just lost, the child just might have autism). Lastly, sign up for your local Run of Autism and support your local autism community.

Stepping off my soap box, I just want others to understand this disorder.  I wouldn't wish this on my worst enemy, however, with rates as high in 1 in 110 children the chances that you may know someone with autism or have a child with autism is extremely likely.  I also want to say that if you read the symptoms of autism, we all have little quirky behaviors that people don't understand. And in this way we all have a some "autistic tendencies".

Autism Speaks. (2011). Facts about Autism. Retrieved from http://www.autismspeaks.org/whatisit/facts.php

Bataan Memorial Death March Marathon 26.2 miles

I started back running approximately 6 weeks ago! To go from 1.5 miles and 2 miles with out stopping to running a full 13.1 miles the week after my first half marathon that I had walked partially, then two weeks later finishing with my team 5th place of 26 on the Bataan Marathon is just unbelievable.  It is such a high and I just wanted to write it all out before I forget all the details.

5:30pm- The night before the big day I tried to go to bed because I knew I needed to wake up at 12:30 am to be at Josh's house by 2am so that we could be at White Sands Missile Range before 4:30am when they would close the streets for the race.

9-12pm- Ron came to bed and I needed water this woke me and the nervousness creeping in kept me from falling back to sleep. Finally at 12 I went ahead and took a shower getting ready.

2pm- Josh's house. Sam was already there and Josh fed us as we waited for Johnny.  Everyone was sleep deprived and also excited. I found out I probably got the most sleep of everyone even with only 3 to 4 hours of sleep.

3:30- We arrive at White Sands.  Its super cold outside, much colder than when I left my doors in El Paso. It was almost 70 degrees at midnight where I live so I had dressed in shorts and a tank top knowing it was going to be probably fairly hot during the run.  We show up and its very cold and very windy. I have no idea how cold just that being outside for only a few minutes would cause me to shake and shiver uncontrollably.  The boys look for a way to sleep in the car until 6:30 formation.  I was to excited for sleep.  I was very aware that I may never experience anything like this again and that I was sharing it with some of the most awesome people I have ever had the experience to know.  So many thoughts going through my mind at that time.

6:30- Formation and I'm not sure how long we were out there.  I was beyond freezing.  Between the National Anthem and the speech about the Bataan Death March Survivors maybe we were out there 45 minutes or an hour. Honestly, I just can not recall because it was to damned freezing.  My whole body was convulsing.  I just wanted all of us to huddle together to create warmth, but those boys and their space issues and anti touching policies meant I was out of luck!  We met up with our fifth member, BJ and his girlfriend at this point.  A very cute couple. They looked warm all cuddled up together! It was adorable.

7:30ish- We start running.  The adrenaline was rushing through my veins and it was warm and nice.  I'm not sure what flying feels like, but it must feel similar to that feeling.  I felt light on my feet even though we were running in sand box sand. Weaving in and out of people. We ran 4 miles effortlessly only stopping because I needed sunscreen. 

9:30ish- Not really sure of the time at this point.  But we ran another 4 miles effortlessly.  Our team was still together. We stopped for Johnny to get his blisters treated.  I think the part I started loving at this point is the fresh oranges and bananas at the water spots. Probably the best thing I have ever had when running. 

10am- We are running on the road now, leaving the dirt behind. We are already seeing some of the top runners on their returning trip. My stomach is starting to bother me. I thought maybe I ate to much and drank to much right before running.  This is really on my mind and it seems like everyone is ready to talk instead of listening to music.  At first keeping pace with out music was very hard and just over all I started to hit a wall.

Mile 10-15 Not sure what time it is but I'm just done.  We are in deep sand and up hill. The path is going around a mountain or something.  I have fallen back with Josh who also has blisters.  I can't keep up with Sam and Johnny who are now running at least a 10 minute mile pace.  I see them up there and I keep trying to catch them just to have them leave me again.  Josh and I walk and run some. Definitely walking up hill, trying to run down hill.  BJ and his girlfriend had also stopped running and had started walking.  They did the whole thing hand in hand by the way.  I was thinking that was really neat and that I haven't had a "honeymoon" phase on that level in a very long time, at least since Ruidoso.

Mile 17ish- I'm not really sure what mile, but we met at an aid station catching up with Johnny and Sam. After resting for a little while to let BJ and his girlfriend catch up to our group, I decide I feel like doing some running again.  I think by now we are out of the sand at least for a little while so I start running and Sam joins me.  Johnny falls back with Josh and I felt bad that I had left Josh after he had helped me get through the hardest part of the race and the wall that I had hit, but I just wanted to run.

Mile 17ish-Mile 25- Just Sam and I.  We ran about a 10 minute mile pace for a while. He pushed me up hills and everything. We got to talk alot, which I of course I love to talk.  The road ended and it became sand again.  The same sand as the beginning of the marathon, except that I was no longer effortlessly floating over any of it. I was sinking with every step.  We ended up walking most of it, with short bursts of jogging here and there. We stoped at a couple water stations just to get a drink and kept moving.  Finally we were at the water tower.

Water tower:  We sat out there for about 45 minutes waiting for our team mates. By this time I knew I was severely sunburned, but did not comprehend the extent.  I was focused on being so close to the finish line, watching people pour past us as we waited. We sat on the other side of a rock wall which offered shade, talking some, but mostly exhausted.  Finally all our team shows up. BJ hand in hand with his girl friend again.  He looks to be in some pain but also very determined.  We have a mile to go and the plan is to walk until close to the finish line and then run it in.  BJ is holding walking pace at almost the same pace as a slow jog.  As we get closer he picks it up and starts running at a fairly fast pace. 

26.2 Miles- We, as a team, cross the finish line running.  Approx 7 hours 30 minutes out there in the sand.  We take lots of pictures, but we don't hang around for long.  Sam had been up for 30 or so hours by this point and needed to get home.  Overall, I felt good and it wasn't until I got to Josh's house that I realized the extent of my burn. I had totally missed my shoulders when we had applied sunscreen at the beginning of the race. 

Today is Tuesday and looking back at this whole thing.  I just feel so grateful for my friends that helped me through this and basically held my hand through accomplishing my goal.  I am acutely aware of how little time I have with them, before we graduate.  I am so proud of what we accomplished even though I wasn't able to run all 26.2 miles.  Bataan was a very hard course and I think for what it was we did great.  I look forward to finding the motivation with in myself to do a few solo marathons.  Its really hard for me to keep the determination when I am doing something solely for myself.  When nobody will know what I have done but me.  Nobody to impress, nobody to be encouraged by except for myself. 

I will, however, hopefully always remember my first marathon and the great people who were beside me.  Thank you to Sam, Josh, Johnny, BJ and his girlfriend (sorry I forgot your name ).

Moving my running blog

I just want to post the few posts I have from my other blog. There isn't very many enteries but I just found the last site too difficult.

March 9th 2011 : 13.1 Miles

   
    Two years of running and I finally completed my first Half Marathon.  Granted I have been in better shape then my current condition, but sometimes thing just do not always work out exactly as planned.  Last year I had done all the right training only to injure myself two weeks out from my journey.  That injury hit me hard and I gave up running for a time thinking I was just not the right type of person. 
    Long story short, 3 weeks before this marathon, with urging of a friend and after only keep up with a moderate exercise routine for the last several months, I registered for this half marathon.  In a very short time I went from running only a mile or two to running 8 and then jumped from that to the 13.1 miles.
    To say the least it was hard. The first 7 miles I ran at a 10 min/mile pace which is very fast for me. Around the 8th mile, I could no longer hang at that pace and at the turn around there was a strong head wind which forced me to walk.  My foot immediately began hurting when I walked and by the time I realized how much walking had hurt my foot I could no longer run on it.  The result was a torturous last 4 or so miles that I walked much more than ran.  All in all my time was 2 hours and 50 minutes.
    I was disappointed at myself initially, as I felt I had let myself down by walking so much.  But a couple days later now, I have change my prospective and see this as only a starting point from which I can only progress.
    Later this month, I will be participating in the Bataan Death March full marathon held each year at White Sands Missle Range.  This will be a team event.  I am excited to participate in this with two of my best friends Sam and Josh from nursing school.  It should be very interesting if nothing else! Keep a look out for more on that!

One week to Bataan:  March 21, 2011

    Spring Break is over! Today will be my first day back at school.  Training over the last two weeks has gone pretty well. I ran a complete 13.1 miles about 1 week ago. Didn't stop once. Yesterday I was hoping to run 15, but stopped at 10. To date I have not gone over 13 miles and by the end of the week I will be walking/running 26.2 miles. Pretty worried about it, but also excited. My biggest concern at this point is not sustaining an overuse injury.  I look at running as gift each day I get to go out there.    
     My challange this week with school restarting will be again finding a balance between finding time for school and finding time to exercise, while still factoring Ron's school and time with the kids and dogs. Its a juggling act to say the least.  The nice part about it is that in a couple short months 7th semester will be over and I will go into 8th semester which is basically an internship of sorts.