(Not so) Typical Tuesday: Autism Awareness in Three Examples

What is Autism Awareness?
It is being aware of what Autism really is and knowing that, even on an otherwise ordinary day when a person with Autism would otherwise blend in with all the neurotypical people in the world, Autism is part of the overall picture. Below are three real-life examples that actually happened in my home. All three examples happened earlier today:

1) Trini--who is one month from her 5th birthday--is acting cute and charming. She has counted to 19 (minus 15 of course) and has identified all the letters on a paper on the fridge. She has poured her own juice and has dragged the stepstool over to the fridge to look for lunch. But the doors are very swing-able, and instead she begins swinging on them back and forth.

When I stop her gently and place her feet on the ground, she falls to a heap and starts screaming "HUNGRY!" repeatedly. I offer her several lunch options and get either a "No!" or several shouts of "HUNGRY!" She kicks the wall and begins to dump things onto the ground and fling books out of the shelf.

I have been in this situation many times, so I start the intricate dance of damage control: ignoring and calming all while praying this incident does not last an hour. It doesn’t. This time we are lucky and it lasts only twenty minutes.  Then this same child asks me in a full sentence, “Can I have chiken nuggets?”

If you were not witness to the twenty minute meltdown, you would swear my child is “normal.” And while I could show you many other subtle reasons why my child has legitimate reasons for her diagnosis of Autism, if that is all there was, I might be inclined to agree that her little quirks are no big deal. But the meltdowns from nowhere do exist and raise the Family Emergency Level to Defcon1.

2)Amelia has Aspergers. She thrives with the routine provided by the structure at school where  the rules and consequences are laid out. And though we have done behavior charts and other methods of positive discipline, family life does not always lend to the same type of structure. And at times she does something wrong that was never in her list of infractions.

Today she comes home and begins to color. After she finishes, her sister Kristin realizes Amelia has defaced a picture drawn by Kristin’s best friend as a gift. It cannot be repaired or replaced. Since Amelia’s main offense to her siblings has usually been to call them names, our solution is most often to have her write an apology.  But I feel in this situation something else needs to be done. I feel she should do an act of kindness for her sister. Because I will not accept just a sorry note, she throws a tantrum very similar to the one I describe above with her little sister. The difference is that Amelia uses more damaging words than damaging actions.

She also has other issues related and co-morbid problems. Like her sister, these alone would be minor issues, but when added to the big picture, it becomes a big challenge.

3) My son Josiah is a responsible and courteous eleven year old that is rapidly approaching his twelfth birthday. He is also on the Autism Spectrum. The DSM IV would call it PDD-nos, the DSM V would call it simply Autism Spectrum Disorder. Other than some co-morbid learning disabilities, he appears “perfectly normal.” He has obsessions, but more than just one or two, plus he can be persuaded to talk about other things.  Sometimes he does not get social cues without a bit of explanation, but he understands once that explanation is given and does show empathy.

His issue today is rigidity. As a rule, he cannot eat lunch unless he eats breakfast first. He cannot eat breakfast if he does not get dressed first. He is also very particular about his clothing.  It has to feel right and fit a specific way. Today the day was delayed by a couple of hours because he had no clean clothes, and to get the basket out of the car would require him to re-wear something he wore yesterday.  That idea repulsed him until I told him he could take a shower as soon as he got back inside.

Years ago he would react to more things in more severe ways. Today it is less frequent. But it is still frustrating for both of us.

So what is Autism Awareness?
It is being aware that there are many children like mine. My children are on the Autism Spectrum. Sometimes all the pieces make them appear neurotypical, and sometimes all those pieces fit together in a way that shows they are definitely on the Spectrum. That is what Autism is, an existence of inconsistencies with variables at both extremes.

I love Trini, my Autistic daughter. I even love her Autism. The same is true regarding my other two children on the Spectrum. But I am grieved by people who think that saying, “She looks normal to me,” is a compliment. It isn’t. Being Autistic isn’t what it looks like on the outside, it is how you operate on the inside. And even if my children could blend into a crowd as well as Waldo in his famous books, if you look carefully you will find them: my uniquely challenged, uniquely special children.

So if a parent tells you their child has Autism, don’t deny it or downplay it. It is the same as a parent telling you their child is blond or tall for their age.  And the parent of an Autistic child wants to be able to be open about it. They want to smile with you when those factors make their child endearing and get comfort when those factors are hard to handle. Autism Awareness is understanding that it is not a paradox to say that Autistic people are both normal AND different. Autism Awareness is believing it when people say that they (or their child) is on the spectrum. It is supporting those individuals and their family no matter what it looks like.  In the end, Autism Awareness is loving someone with Autism.

Theological/Thoughtful Thursday - Valentine's Day Controversy?

As a believer in Yeshua (Jesus) I am used to the discussions that come up every Halloween, Easter, and Christmas about the observance of holidays with pagan roots. But I think last year was the first time I heard anyone object to Valentine's Day.  Actually, I have heard plenty of people object to Valentine's Day because they were single or felt sorry for singles, or because they object to the commercialization of the day.  But objecting to it on the grounds that it was "pagan" (a catch phrase that I feel is overused and that I would like to explore in more detail later) is rather new to me though the same arguments are made about the holidays I mentioned above.

I am fascinated with the origins of holidays, customs, language, and culture in general, however the roots of something do not play much of a part in my decision to participate in a certain part of a culture.  I respect those that see things differently, so it is not my intent to convince someone to observe something that doesn't feel right to them, but I would like to explain why someone who "claims to love God" can particpate in something with pagan roots with a clear conscience.  (We can save the discussion about judging my claims of faith for another day.)

On a Christian message board I frequent, someone asked how other members observe Valentine's Day, whether it was religious or cultural to them and if the origins concern them at all.  This is what I responded:

I am interested in the roots of everything (I am the type that gets fascinated by the origins of words and how they evolved over time.) But that is an academic pursuit. Unless the holiday was mandated by God in his Word, it is just another day and I can make that day whatever I want it to be. (In fact even the Biblical ones I cannot fully observe as one would have in Bible times, so even they have been adapted both by culture and my own family. And I know that if I have to do it one day late or not do much this year, that is fine, my relationship with God has not changed in the least.)

Therefore I do not let the fact that the things that are part of our cultrue came from a blended hertiage. I am more concerned with how our culture is currently observing them. And even that is not my main motivation for celebrating a holiday in a certain way. My main motivation is to do something that pleases God and blesses my family today.

So what do I do with Valentine's Day? I use it as a reminder to appreciate all the people in my life that are special to me. The older my kids get I can explain who St. Valentine was. I can also explain other influences on how the holiday came to be what it is, but in our family, it means loving one another.

There is a blog that delves into many topics that concern Christians.  The conclusions the author comes to are not those that are most often heard in the mainstream evangelical world.  I really appreciate his perspective on holdays, so I would like to quote a small portion of what he said about holidays in a Halloween-centered post.  Please take the time to read the rest for yourself.

I do not own the calendar. If people want to celebrate family on the day that I celebrate the birth of Jesus they are allowed. There is no “objective” meaning to Christmas (as evidenced by the fact that December 25 was not chosen because it was the date that Jesus was actually born as well as the fact that it wasn’t celebrated for the first several centuries of the Church), it is a cultural phenomenon. I celebrate it because it means something to me.

http://jbyas.com/2012/10/30/why-christians-should-celebrate-halloween/

While I am fascinated with the intellectual debates regarding cultural celebrations, I  really do not care whether one chooses to observe a holiday or not, but hopefully this sheds a little light on why my family does things the way it does.  Maybe that sets us apart, or maybe that makes us one of the masses.  It doesn't matter to me.  I just know that my kids love the fun of Valentine's Day and I like an extra excuse to tell people I appreciate them.  So I will end with the same greeting I put on Twitter today:

Valentine's Day is for all loved ones, not just lovers. So love and warm wishes to everyone who makes my life a little brighter.

No, I Did Not Abandon This Blog

I have not forgotten about this blog. The fact is, there are always blog posts floating around in my head.  I had this great idea about how to format and organize my posts on specific days, but I never have the right thought on the right day.  So, in true ADHD fashion, I have posted nothing at all after a strong start. 

This little post is to explain my great format idea and vow not to be beholden to it if genius stikes again. To be honest, I am actually quite pleased with my ability to both cover all the topics I desired and do so through the use of alliteration. So at the very least I should post my idea so you can all marvel with me. (And yes, I am exaggerating.)

 Set Apart Sundays  A day when I focus on some way in which I either feel a little bit like an outcast. And that is not always a bad thing.  Maybe I will describe a time in which I deliberately took a road less taken.  Or perhaps I will discuss what it is like to not quite be understood to be who you are.  This is a rather open-ended day since it is the whole subject of my blog.

 Mommy Mondays This is my time to describe what it means to be a parent.  It is also a chance to share some of the funny stories collected on my journey.

(Not so) Typical Tuesdays
What does it mean to be neurotypical?  What does it mean not to be?  Exploring the many diagnoses my family members have and advocating for awareness in all areas of mental health and developmental disorders.

Writer's Wednesdays
Here I will share news of things I am writing, give reviews of things others have written, share links to other great blogs and sites, and offer writing tips I have collected.  I will also feature other writers that might want to share a guest post.

Thoughtful Thursdays/Theological Thursdays
A chance to delve into deeper thoughts. Political, theological, philosophical. Here I will explore the things of God and man.

Fan Girl Fridays
Everybody has something that interests them: a show, a movie, a book, a sports team, a band. But some of us take our fandom to greater heights.   I am a Fan Girl.  I am pre-disposed to obsess over the media that interests me.  This is my place to do so proudly.

Sanctified Saturdays
Sanctified is another word for Set Apart.  If I write on this day, it will be a day of reflection.

So that is the framework.  But I expect to fill this blog with wild cards of all sort.  And I promise my next post won't be half a year later.

The One Where I Start a Blog

Yes, this is a lazy first title, but I just spent an entire night sitting up in bed with my laptop googling words and checking thesauruses to find the title that most perfectly (and concisely) fits who I am, who my family is, what this blog is all about.  I keep trying to fit one more word into it, but overall I like it.  I am trying it on for size, or taking it for a spin around the block (to use another metaphor) before I then use it to create a personal email.  The point of saying all that is I have no energy left to put into a title for just ONE DAY.

I will do my best, however, to not use titles like today's as a rule.  First of all, that gimmick is sort of the intellectual property of the writers of Friends.  Doing it once as a nod to a great show is enough.  Second, the grammar is already killing me.  I really wish it said "The One in Which I Start a Blog."  I think.  Wouldn’t Mr. McCandlish, my AP English teacher, be proud that I still care? (The man had a shirt hanging in his classroom that read "If you don't give a damn about the comma, what DO you care about?"  I have been tormented over my comma use ever since.)

 The other thing I will not make a habit of doing is rambling as I am now.  This post will give you a good idea of my "voice", (Does the comma above go inside the quotes? Curse you McCandlish the English teacher!!) and I think that is important before I delve into topics that could be quite serious. I have been misunderstood for being harsh, judgmental, and many other things that no one ever assumes when speaking to me in real life.  I have become convinced that, this too, is McCandlish's fault.  I speak with most of the locally accepted grammar errors and colloquialisms,  but was taught to write well.  Therefore my writing often comes off more seriously than my intent.  So when you feel temped to hate me, shift the blame to the curmudgeon who trained me.

SO WHAT ON EARTH IS THIS BLOG ABOUT ANYWAY?

I am glad you asked! (See what I did here?  I am acting like we are in a conversation.  Clever, eh?)
Since I took eight hours to come up with a title, I suppose I should unpack it for you.  I just hope I can put it all back together when I am done.

 1. This Blog is About Me
Aren't most blogs?  Mine is no different, except I have no time - nor desire - to make this a journal of my life. It is about what interests me and affects my life.  It is more specifically about my perspective on things, why I have that perspective, and how that affects my interactions with others and the world around me. 

 What I have found is, that in more areas than one, I am not quite in the mainstream.  However, I am also not completely independent or recognizably counter-culture.  I could almost call this blog Somewhat Set Apart, but there is more to it than that.  This blog is where I am, it is the place where I can live freely set apart.

2. This Blog is About My Children
Again, this is not so much to recount their experiences in softball and scouts, but to share how our unique family is perceived by others

•There are many of us.  The minute you realize every prize package is for a family of four, you know you are set apart.
•We homeschool and we have kids in public school.  This is the first of many issues where we straddle a line that has divided many.  And we feel like we are living in no man's land.
•Some of the children are on the Autism Spectrum.  Autism by nature sets you apart.  Regardless of one's ability to communicate and interact with the general population, a person with Autism is wired differently.  Also, the minute a parent receives a diagnosis, they are asked to choose up sides: neurodiversty or cure?  You also have to field questions and comments from people who are ignorant of what Autism Spectrum Disorder is. Finally, we have high functioning children, which means we are not fully immersed in the services and world of the child with greater challenges.  So both parents are somewhere on the outside of both the neurotypical worlds and the world of Autism support.
•Some in the family have ADHD.  Again, our brains are wired differently.  And even at our very best, when we even outshine the "normal" people we have to do it in a way that makes no sense to the outside world.  (Plus once you have proven success, they have no idea why you cannot replicate it tomorrow.)
•One of my children has a mood disorder.  In her own words she feels she has to deal with problems much different than others do.  Her diagnosis is often invalidated by people who only see one side of her.  And this child is often on the sidelines even with a busy extra-curricular schedule.

3. This Blog is About My Faith

This is not a devotional.  I am not saying it can't happen, but I am not setting out to write a daily inspiration for people.  This is about how I am set apart in various ways because of my beliefs.

•I am a believer in Jesus.  The word "sanctified” means set apart.  I am set apart to do His will.
•I worship in a Messianic Jewish context.  The Jews were God's chosen people, set apart to bring the Messiah to the nations.  Studying God's word from a Hebraic standpoint sets one apart from most of Christendom - and we are oft misunderstood. Loving the Biblical (and just cultural) traditions that are rooted in Judaism while affirming that Yeshua/Jesus is the Messiah set one apart from Jews.  At times one feels like a bridge, other times like a lonely island.  In addition, I am pretty sure I am a gentile - yet I am drawn to the Hebraic Roots of my faith and identify with Israel.  Depending on the commentator that means different things as far as my participation, but it makes less sense to others than does a Jew who worships Yeshua.
•I don't toe the party line.  I will say I am conservative because I take the Word of God very seriously. And that means, as long as the context makes sense, I take things that are said at face value.  However, I do not take what teachers say at face value, and I am willing to look for myself to see if even mainstream doctrines might not be correct.  Sometimes it is tradition that has been proof texted.  Sometimes two seemingly opposite understandings are derived, and I will no longer assume that the "underdog" side is the heretic.    I also have detached myself from much of evangelical culture.  Sometimes I feel they can be too set apart -but that results with me being once again on the outside. 

4. This Blog is About Parenting and Discipline
I put this separate from my "children" category for a reason. This is an area I am passionate about. I believe this is one area where many have followed the status quo without even pondering that there could be something better out there.  Yes, I said better.  But I am talking about the method, paradigm, and tools - not the parent.  And with anything in life, ideals are only as good as their ability to adjust to variables.  Sometimes ideal in a certain situation is the exact opposite of a general ideal.

 But on topic.  I believe that parenting can be done gently and without punishment.  (I will clarify later.)  I believe that attachment parenting -including things like breastfeeding, baby wearing, and sleep sharing- are important.  Obviously these things set me apart both in the Christian and secular culture in North America.  But I am mainstream in most of the rest of the world.

5. This Blog is About Alternative Lifestyles
I look fairly mainstream.  I eat fairly mainstream. My health practices are fairly mainstream.  But my philosophies are more alternative.  I am making baby steps to become more natural in my lifestyle.  That is often called crunchy (like granola).  I am just mildly crispy.  Some of my choices do not even ping the neo-hippie radar, but they make me seem a bit odd to most suburbanites.

 6.  This Blog is About Being Honest
I am not very political, and I do not use Facebook as a place to lobby.  I stay out of most controversial conversations in real life as well.  It is part of my personality to not want to offend anyone - ever.  (That is, of course, impossible.)   I realize sometimes others might be encouraged by my point of view.  So in areas where I am passionate, I am not going to hide that to spare feelings.  Of course I will use tact and love, and I am still not going to comment on every news piece.  I will just give my take on those things that reflect my true nature and passion.

So there it is in a nutshell.  (If that nut was huge.)