Thursday, April 30, 2015

Autism Awareness 5k 2015

On Sunday, April 12th I had the pleasure of running in the 3rd Annual Autism Awareness 5k.  I ran this race last year as well.  Each year since its inception the course has been at a different location, and I think they may have found a winner this year.  It starts near the track at Bucknell University and is a double loop around campus.
My hubby is such a good sport!
Also new this year was the addition of fun family activities.  So my husband brought the kids to play while I ran.  There was a DJ playing fun music, including many Disney favorites!  There was also dancing, face painting, and bubbles (my kids' favorite!)
Dancing Queen!
My fellow autism mom, Kristen, was running again this year too, and I hoped just to keep her in sight for a chance of getting a new 5k PR.  I'd have to beat my 23:09.  I ran a pretty good race, but didn't manage a PR.  While I don't have an official time, my Garmin gave me a 23:11.  So close, bummer, right?!  But there was a heck of a hill and it had to be run twice, so perhaps on a flatter course I'll stand a chance.
9th Overall, 4th Female Overall
The event was organized by Bucknell's BRAIN Club with help from a few of ADMI's Advisory Council members.  Proceeds from the race would benefit ADMI.  I feel like this is one heck of an event that will only keep getting better.  Runners and walkers and strollers welcome!
Perhaps the best part about the day is the feeling of belonging.  I feel that many people there had a connection to autism.  Its so nice to find a place where you can let loose and relax.
We run for CJ!

Tuesday, April 28, 2015

Autism Aware- What Is Autism?

Autism Awareness Month continues!  So far we've talked about my son's journey to diagnosis and treatment.  But what is autism?  What does it look like?  For starters, I'm going to tell you that Cullen's autism is not going to look like your nephew's autism, or your kid's classmate's autism, or anybody else's.  There will probably be striking similarities in some areas, but stark differences in others.

Autism is a complex developmental disability that typically appears during the first three years of a child's life and influences that child's ability to communicate and interact with others.  Autism affects every child differently and to varying degrees of severity.  It is characterized by difficulties in social interaction, difficulties in verbal and nonverbal communication, and repetitive behaviors.  There is no known single cause for autism.  Current statistics released from the CDC earlier this year state that an estimated 1 in 68 children (1 out of every 42 boys and 1 out of every 189 girls) are diagnosed with autism in the U.S.

That is a very brief, clinical sounding definition.  I'll admit, I spend much time on the internet, especially lately, reading blogs written by autistic people.  I stumbled across one about What Is Autism from Nick Walker's Neurocosmopolitanism and I really think its spot on.  His text below:

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.
Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.
According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.
Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.
The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.
Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.
There is just so much that I like about this definition.  It talks about how there are physical differences in the brain, that it begins in utero, that it has a "pervasive influence...... throughout the lifespan," that it produces "distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing," that there are commonalities but that autistic people are vastly different.  If you believe this definition, as I do, that means you agree that people are born autistic and that there is no cure, but that this is not the end of the world.

So what does Cullen's autism look like?  How does our home life differ from yours?  To be continued...

Saturday, April 18, 2015

Autism Aware- Our Journey to Treatment

My son Cullen was diagnosed with autism in July 2013, and getting to that point was nothing short of a trying journey.  Figuring out what to do next seems to be a continuation of that journey.

My son was receiving speech therapy during the time we were waiting to be evaluated by the specialist.  He received half an hour with a speech therapist and one hour with a teacher every week.  It wasn't nearly enough, and it wasn't a simple speech delay with which my son was dealing.  Please don't misunderstand me, Gail and Michelle were phenomenal and I will be forever grateful for the role they played in our lives.  But I now know that Cullen needs intensive Applied Behavior Analysis (ABA) therapy, and we'll get back to that, but first, wrap-around.  

Unfortunately, the status quo in our area seems to be "wrap-around" services.  I'm going to be upfront about our experience with wrap-around and tell you it was not good, and I'm very bitter about the whole thing.  First of all, Cullen had to be evaluated by the agency's psychologist.  Keep in mind that he had already been evaluated and diagnosed by a specialist who in his report indicated Cullen would benefit from ABA-based therapy.  But we went through with the evaluation.  Then, after the evaluation, we learned that because of Cullen's insurance, we would have to use a different agency.  Cullen then had to be evaluated again by the different agency's psychologist.  So three evaluations all in support of ABA-based therapy.  It seemed like a tremendous waste of time and resources to have two more evaluations.

I'll spare you the drama that came with the TSS (therapeutic staff support), the BSC (behavioral specialist consultant), and the agency in general.  But long story short, our TSS was only reactive to negative behaviors, and was never, ever proactive in developing positive behaviors.  Cullen doesn't display negative behaviors often (ie hitting, elopement, self-injury, etc), so we wasted a lot of time and resources on a completely ineffective agency and overall got the feeling that they could not possibly care any less about Cullen's success.

So the lesson here is to always question the status quo.  I had done my own research.  I knew ABA therapy existed as a separate entity and suspected that it may be more beneficial than "wrap-around," but I just went with the flow.  Question the status quo.  But sometimes that is hard when you don't know what you don't know.

This all took a lot of time, but I'm happy to announce that we ended our services through the wrap-around agency and began actual ABA therapy with Verbal Beginnings in November 2014.  Our BCBA (Board Certified Behavior Analyst) has been an angel and just what this family needed.  Since November, our BCBA among many other things has been in Cullen's classroom, has taken us on field trips to the dreaded public restroom and barber shop, and has included me, Aaron, and Maggie through it all.  It feels as if we're all learning a little bit more about how Cullen sees the world and how to speak his language.  I wish we had started ABA therapy from the very beginning!

Haircut Time!
A little about the above picture collage- Cullen used to get his hair cut at a stylist's salon.  He did okay at first, but he started to resist.  As he got bigger and stronger we grew worried about him getting hurt.  So we bought clippers to do his haircuts at home.  Aaron would hold Cullen on his lap and I would clip his hair as quickly as I possibly could, Cullen trying to get away the entire time.  As you can guess, haircuts didn't happen all that often!  We worked on haircuts at home with our BCBA, practicing and using copious amounts of positive reinforcement until we felt it was time to put our work into real life practice.  We spent two hours at the barber shop, but there were no tears or meltdowns and even though he didn't get a perfect haircut, I feel certain when we try again in a couple weeks that it will go even better.  

So for now this is where we are and the family seems happy.  I know we won't get to keep our therapist forever, so I'll have to be on the look out for what's next very soon!

Disclaimer- This post is based upon my own experiences and opinions.  I'd like to think that somewhere a family is receiving great services from a TSS and BSC.  I'd just urge you to pay close attention and remember to question that status quo.

Wednesday, April 8, 2015

Autism Aware- Our Journey to Diagnosis

Cullen was born in the summer of 2009, my first baby.  My husband and I were overjoyed, and Cullen is total perfection.  
Seven Months
Life is crazy with a newborn.  The days and nights are long but the months seem to flash by you in a moment.  Before I knew it, he was nine months old and I was expecting again.  Our daughter Maggie came in the winter of 2011 when Cullen was just 18 months old.  Cullen was so sweet and gentle to his little sister, and Maggie, like her brother, is total perfection too.
Eighteen Months
But it was about this time that I was growing concerned about Cullen's lack of speech.  He could make known to me his desires, but when compared to his peers, he was noticeably behind.  I talked to his doctor.  "Boys develop slower.  He's fine.  He'll catch up."
Two Years Old
By his next well-child appointment he hadn't caught up, and I felt he was displaying a few odd quirks, so I reiterated my concerns.  But "boys develop slower and he'll catch up."
Three Years Old
Later that year we moved back home.  We set up with a new physician's office about the time Cullen would have been two and a half and Maggie now a year old.  I spoke of my ongoing concerns about Cullen's speech delays and a referral was made to CSIU (Central Susquehanna Intermediate Unit) for a speech therapy evaluation.  It was probably May 2012 until the evaluation happened.  I talked to the CSIU teacher about my fears that this was more than a simple speech delay, that this might be autism, and she agreed.  She helped set us on the right path, explaining that if therapies and services were going to be covered we would have to apply for Medical Assistance, but that it would only be approved if Cullen did in fact have a disability.  So he would have to be evaluated by a specialist.

At this point we had moved again to our current home and started up with another new doctor.  I simply requested a referral to a specialist for Cullen and that request was granted.  We were placed on a waiting list to see a neurodevelopmental pediatrician, and the wait was long.  So we were kicked back to a pediatric neurologist who we met with in January 2013, Cullen now three and a half and Maggie two years old.  Yes, even the wait for the back-up doctor was long.  This doctor spent about fifteen minutes in a room with me and my son, asked me some questions, then determined, "Your son does not have autism.  In a year's time, he will be normal."
Four Years Old
But I knew he was wrong.

So I called to find out where we were on the neurodevelopmental pediatrician's waiting list and learned that we had been taken off it when we got the appointment with the neurologist.  I couldn't believe it.  I felt really hopeless at that point.  If early intervention is so critical, then why am I the only one who thinks this evaluation needs to be prioritized?!  The staff at Geisinger's Autism & Developmental Medicine Institute (ADMI) were sympathetic to our situation and said they'd do all they could.  We weren't expecting to be seen by the specialist until February 2014, but by God's great mercy Cullen was seen at ADMI in July 2013, right around the time of his fourth birthday.  Cullen was evaluated by a professional team of specialists over the course of several hours.  Then we came back a different day to meet Dr. Thomas Challman, the neurodevelopmental pediatrician.  Dr. Challman spent nearly two hours with us that day, interacting with Cullen and asking me questions no one else had ever asked me before.  And I just remember thinking, "Finally.  Finally someone hears me."  Before we left, Dr. Challman said the words I had suspected for nearly two and a half years, "Cullen has autism."
Five Years Old
I know this story has a tone of sadness, regret, and frustration.  But I share it to highlight a really important fact- you are your child's voice.  If I had been more assertive, more insistent, maybe Cullen would have been evaluated at eighteen months.  And if he had, therapy could have been started much, much sooner.

If you are someone reading this with concerns about your child, I hope that you learn from my mistakes.  Speak up.  Ask for a referral, a second opinion, an earlier appointment, whatever it is that you think your child needs.  And don't stop asking.

So we have our diagnosis.  For a moment, I breathe a sigh of relief because I finally have an answer.  But then it comes, the question, "Now what?"

There are so many resources available online, it is truly overwhelming, and sometimes impossible to decipher fact from fiction.  I wholeheartedly trust and respect the caring professionals at ADMI.  Their website has links to resources as well, but keep in mind that the internet is not a replacement for a conversation with a real, live healthcare provider.

Tuesday, April 7, 2015

Autism Aware- Prologue

April is Autism Awareness Month.  Did you know?  How aware are you?

My son has autism, so I am acutely aware.  And while I'm far from an expert on the subject, and my experience is limited to only that of my child, I'd still like to share our experience.

I'd like to share with you the beginning of this journey, what Cullen's autism looks like, what goes on in our home that might be a little different than yours (and what is the same), and what is next for us.

This is way too much to be covered in just one post, so I'm going to spread it out.  Hopefully by the end of April you will have greater understanding.

So here is our story....

Love & Joy

Monday, April 6, 2015

Mile Run Trail Challenge Half Marathon 2015

One of my goals this year is to complete the TrailRunner Magazine Trophy Series, a really cool series consisting of five races: Mile Run, Hyner, Rothrock, Dam Scramble, and Dam Half.  All challenging, incredibly fun races!  The Mile Run (Tiadaghton) Half Marathon Trail Challenge is an event hosted by Jeff Miville and Integrity Sports.  You take the Mile Run exit off of I-80 and quite literally the only thing there is Mile Run Road and a DCNR parking lot at the trail head.  It really makes you wonder why the exit exists at all!  The race is 13.55 miles long with a little over 3000 feet in elevation gain.  Some areas are quite technical.  Click here if you're interested in reading the course description.

The start is less than thirty minutes from my house, so my friend Dennis and I planned to leave around 9am for a 10am start.  Aaron was volunteering for the race so he left around 7:30.  I started seeing a lot of facebook buzz about I-80 being closed.  Then Aaron called to confirm that and said I would have to take the back road.  I should mention that temperatures decided to be sub-freezing and there were random, heavy snow squalls in the area.  However, Dennis and I stuck to our plan to leave at 9 and still got there in plenty of time since we knew the back road.  They did delay the start by half an hour to allow for some late arrivals.  I could not believe how much snow had fallen there because there was nothing at my house!

Packet pick up was a snap and we had time to kill.  So we hung out in the car for a while.  We spotted our friend Sayard and took the photo op!
Dennis, Me, Sayard
The race starts in the parking lot and goes left down the road, around a cone, then back up the road to the trail.  This was something new this year to try to space out the runners a little bit more before hitting the single track.  I think it worked pretty well.
And we're off!
Dennis and I had previewed the course two weeks beforehand and the snow was DEEP!  Thankfully, I'm glad to say that while it had not totally melted, at least not on most of the course, it had melted enough that running in it wasn't terribly difficult.
Preview Two Weeks Out
My goal for this race was seriously just to not get hurt and not take all day.  Well, mission accomplished!  I enjoyed the run and the beauty of the trail as well as the companionship of my fellow runners.  What moments of the race that stick out most in my memory include the long, long slow climb after the second aid station where Amey Johnson told me it would be getting easier, the creek crossing where I tried (in vain) to keep my feet dry, and of course, running under I-80 in the frigid, ice cold mountain water, then through eight inches of mud for 50 yards, before tackling the toughest hill of the day back up to the finish line.  In my opinion this race is a little tougher than the Dam Half.  There are three aid stations, all well stocked and manned by friendly volunteers.  The finish party had soup, burgers, hot dogs, and beer.  I placed 10/50 in my age group (F 30-39), 142/380 overall, with a time of 2:42:13 (12:23/pace).
Out of the Tunnel, Into the Mud
I changed my clothes and met up with Dennis for some post-race grub.  And we were freezing.  I was planning on waiting for Aaron to finish up volunteering, but I'm really glad I didn't.  He didn't get home until 5pm that night!  Thankfully Dennis was able to give me a ride home.  Good event, good people, would definitely do it again.
My awesome friends kicking some A!
Most photos courtesy of See PA Run- thanks Bo!