Calling for Action

I came upon this article  posted on my Facebook wall this evening and, naturally was outraged.  It is a story of a 23-year-old man with Autism who has a life-threatening heart condition.  The only treatment for this uncurable condition is a heart transplant which he has been denied because of his Autism.  Yes, his Autism.  He is not a smoker, nor a drinker.  He has not acquired this disease because of any lifestyle choices he has made.  It is genetic condition he inherited from his father who died from this when he was only 27-years-old.

This is absolutely unacceptable.  To deny him a necessary treatment of this nature because of his Autism is blatant discrimination.

I am posting the link for the petition here.  If you are every bit as appalled by this then please sign it and spread the word.

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Loving Loving Lampposts

I feel I really need to “give a shout out” to what was quite literally a life-changing documentary for my family, Loving Lampposts.

First, let me give a brief history about life before we watched it.  On a physical developmental level Joel seemed to be moving along at a rate that was appropriate.  Medically, he has always been very healthy.  He’s never experiened any instances with seizure activity, allergies to foods or other environmental agents, or any of the stomach/intestinal problems that strike some children with Autism.  He also did not respond negatively to any of his vaccinations, other than not liking the process of getting the shots, of course.  Behaviorally, he was almost always pretty easy going, he smiles and laughs and plays with toys, etc.  He is very affectionate with us and always has been.  In these areas, there never was a cause for concern.

However, there were other behaviors he exhibited that were highly unusual.  Joel has only ever spoken a few words in the five years since his birth, but he isn’t silent by any means.  He squeals, hums, blirts out sounds like “gah” or “choo choo,” clicks his tongue and other kinds of noises.  At first, we didn’t really worry too much about the delay in speech because Will was a late bloomer verbally and now we cannot get him to stop talking.  Ever.  There were times, and Joel still does this every now and then, when he would be sitting by himself not interacting with anyone and start laughing as though he had just seen or heard the funniest thing.  I am talking about full on belly-laugh giggling.  We didn’t really know what to make of it and certainly didn’t think there could be anything “wrong” with a child laughing, right?  Who starts to worry when their child laughs?  I remember one time I did sit down to my computer and googled “child laughing for no reason” and one of the things that popped up was Autism-related.  I quickly closed my eyes to that because Joel didn’t have Autism.  I mean, you saw the previous paragraph, right?  There were no Rainman signs or symptoms in Joel, so, that was just ridiculous.  Another thing about Joel is the constant stimming.  He flaps his hands, he spins, he walks around on his tiptoes, he “dances,” etc.  I mean, from the time he wakes up in the morning to the time he goes to bed, he is in near constant motion.  It sometimes makes me dizzy.  When Joel isn’t moving, he is occupied with something.  I’ve mentioned on this blog several times his fascination for shiny things and anything that can be ripped, torn or shredded.  He loves my cooking utensils.  We have had to put child safety locks on all the kitchen drawers to prevent him from pullng everything out.  On occassion, I will purchase measuring cups, slotted spoons, strainers and similar items and he is every bit as excited about these “toys” as Will is about his Legos, action heroes, and toy cars.

Even with all of these behaviors, or “quirks” as we called them, we were still in a state of denial about the situation.  We always expected that he would “snap out of it” and start speaking and “normalize.”  What can I say, denial ain’t just a river in Egypt.

One night about a year ago I was the only one awake and decided to watch something on Netflix.  I was flipping through the New Releases and found Loving Lampposts and thought it would be pretty interesting because I’m a psychology major and that was right up my alley.  I think there was also a tiny part of me that wanted to watch on a more personal level, but that was a very small part.  After all, Joel DID NOT have Autism.

You can find the trailer here.

I got through the first 20 minutes or so into the movie and was enjoying it in a pretty detached manner.  None of it really pertained to me or our household.  I didn’t recognize any parallels to my own life until the audience was introduced to an Autistic adult who works with Autistic children by teaching them through music.  My true epiphany, and I’m not being dramatic, that is what it was, came when we, the audience, see him interacting with a little boy who has Autism.  This little boy was smiling, squealing and stimming exactly the way Joel does.  It felt like I had been knocked over the head when I saw that.  I remember thinking, “Oh my gosh, THAT is Joel.”  I watched the rest of the movie thunderstruck.  I didn’t wake Husband when I went to bed.  I just worked things over in my mind.  In the morning, I had him, Maya and Will sit down and we all watched it together.  From then on, we have made Autism Awareness our number one priority.  Not just for the community, but for ourselves.  I cannot tell you how much time I have spent reading and researching everything on this subject and I am just getting started.

One of the things I appreciated the most about Loving Lampposts is the attention given to how Autism is viewed by the public as well as by those who are actually affected by it.  They emphasize the point that you can either be on a mission to cure or “defeat” Autism or you can accept the diagnosis and embrace what makes these children and adults so special and unique.  Husband and I decided to take the “acceptance route.”  We are not on a mission to find a cure, nor do we expect there to be one in our lifetime.  If we are wrong and a cure is found, then we would carefully weigh our options.  If Joel is able to have a say in it, we would let the decision be his to make.  It is our job as parents to support our children emotionally, physically and mentally as much we can.

This does not mean we reserve any kind of negative judgement toward other Autism parents who do hope to find a cure.  Everyone handles this diagnosis differently and making the choice to accept or defeat is just part and parcel of moving forward.  After all, forward motion is just what is needed to help spread awareness.

As for our extended denial, I will always regret this.  We were aware that something was going on, but we let our fears cloud our judgement.  Sure, we are making great strides with Joel now, but we have lost some valuable time.  That is why this blog is so important to us.  If our story can in any way affect the outcome of another child, then it might not have been in vain.

speechifying and awareness

(Edit: Major faux pas on my part.  I was completely unaware of the Wordless Wednesday” phenomena.  I promise to be completely wordless next week.  *Side note, I think Husband is really excited about the idea of me being wordless and will probably try to convince me to have wordless Mondays, Tuesdays, Thursdays, and so on as an “at home activity”.  That being said, here is my post for today, words and all.)

I don’t know if it has already been mentioned, but Husband and I are currently full-time college students (better late than never, right?) and are taking a summer session oral communications class which means a huge portion of our grade is based on our ability to give a speech.  Yikes!  Actually, we are almost finished with the semester and, I’m happy to inform, we have both survived unscathed and neither of us have fainted or embarrased ourselves in that fashion.  I don’t know about Husband, but despite the nervous shakes and queasiness, I have enjoyed giving my speeches.  Like any mouthy Autism mom, (I’m not ashamed to admit it) I took the opporunity to talk about Autism awareness for my informative speech, and about the importance of vaccinations for my persuasive speech.

This has been a positive experience on a couple of levels.  For starters, ever since I gave my informative speech, several people in the class have approached me and told me their stories about grandchildren, children of friends, etc who have Autism, or are suspected to have it.  Ever since my son was diagnosed last year, I have had very few experiences with being able to talk to others about this and the face-to-face dialogue is so refreshing.

One thing I’ve noticed is that even though we may differ on opinions about medications or whether or not Autism is a “disease,” we share a commonality.  Take away the controversy over vaccines and all the other sensationalism we encounter in the Autism community, we do have one thing in common that outweighs all those other things and that is our love for these amazing, beautiful people in our lives who just happen to have Autism.  I have really enjoyed the opportunity to be able to connect with others in these situations; to be able to rejoice in the triumphs together or shed a tear about something that hurts.

I was also very excited when I wasn’t the only one who chose to speak about Autism or Autism-related causes.  One very nice lady in our class made a speech today about her grandson who was diagnosed at the age of five with Aspergers.  Since his diagnosis, he has made some amazing breakthroughs, including wanting to see a fireworks show for the first time this year after a lifetime of being terrified of the event.  I was really moved by her speech and her love and pride for her grandson.  Also, a young woman in the class mentioned philanthropic work her sorority does in the name of Autism Speaks.

I hate to sound like a gushing dork, but I feel really pumped about this awarenessy-ness.  Sure, our class is pretty small by college standards, but no one is an island and each of the people in class will hopefully take what we have talked about to heart and share it with others in their lives.  It is a powerful thing to be a part of that.  To consider how my research (and boy, have I been doing that!) will benefit others.  I highly recommend this activity and the feeling that comes with it to others.

It’s an Autism thing…

I very reluctantly started “Facebooking” in March of this year and, despite my best efforts, have actually enjoyed the experience.  It has allowed me the opportunity to connect with individuals from my personal life I don’t usually have the opportunity to chat with, including some of my fellow classmates.  It has also provided me the opportunity to get updates on politcal, philosophical, scientific, etc. topics that pertain to, or interest, me.  Naturally, I have joined several Autism groups through which I’ve been able to keep updated on new things in the Autism community.   One of the things I’ve come across is a meme that says, “It’s an Autism thing, you wouldn’t understand.”  For some reason, that one kind of rubbed me the wrong way and, I’ll tell you why.

As an Autism parent, I feel it is my duty to be an advocate for my child and the best way to do so is by spreading awareness.  Informing someone that they couldn’t possibly possess the level of empathy to understand a particular reality in our lives is not only mildly insulting, it also shuts down any kind of communication.  I don’t care how complex the subject may be, I will do whatever it takes to help someone understand.  If I do so respectfully and politely, I will have increased my chances of not only spreading a little bit of awareness to that particular person, I will also hopefully have inspired them to also become an advocate for Autism awareness.

Keep in mind, I do understand there are instances when some people, for whatever reason, just aren’t going to understand or even try.  There are people out there who feel that Autism is a label that is misapplied, that these children “just need some good old-fashioned discipline,” or that we, as parents, are just trying to get attention.  This misinformed outlook is all the more reason to get this information out there.  If we want them to understand the complexities of Autism, then we need to be ready to extend some understanding as well.

Hi I’m James. …

I’m the other half of this parenting team. I’m 37 years old. I work as a scrub tech at a local hospital and I’m a full time student. Now that we’ve been properly introduced let’s get to the important stuff.

So I woke up at about 0600. Since I work the weekends there are a couple of days that I really don’t have a routine. I’m on top of my school stuff so some mornings I just get up and wander around the house. At 0645 I heard Joel moving around so I got him up for a pull up change and as soon as I was done with that he wanted to cuddle. I picked him up and we moved to my chair and this kid fell asleep for a good 2 hours. The reason I’m bringing this up is because Joel is a rather wiggly little boy. The majority of the time he’s really resistant to staying in one spot for any prolonged period of time. So when he does something like this I really enjoy it. Other that that we’ve had a pretty good day mostly consisting of getting ready for family on the 4th.

So I think we’re going to try potty training. If anyone has tips and tricks for potty training a 5 year old, non-verbal kid with autism please feel free to share. For now were just taking him periodically and sitting him on the pot. We will see how this goes.

Oh and some really cool news from a friend at work. This friends daughter races dirt bikes avidly and is joining a team called teamautism. She wants Joel to be her “riding buddy” and he will be displayed on her bike as such. We’re pretty excited.