Saturday, January 30, 2010

Before I Knew I Was An Aspie, My Puzzle Piece Never Fit

While I was in bed last week with some obnoxious form of stomach flu, I had a lot of time to contemplate my life, the paths I have taken, the roads less traveled, the blockades barely crawled over, the stumbling blocks I never did climb and my childhood as an undiagnosed person with Autism / Asperger's Syndrome.

Growing up, I always felt different than my peers, uncomfortable in my own skin, a puzzle piece that didn't fit.  I didn't know about Asperger's Syndrome until my littlest was diagnosed with Autism at age 2 and my oldest was diagnosed with AS at age 8 so growing up, it was flying without a parachute diagnosis-wise.

These are some of the reasons / self-justifications I felt like such an outsider:

1) I was adopted.  -- This made the most sense.  Although my parents were / are amazing loving human beings who I will always consider as Mom & Dad, I was missing a biological connection with my birthmother and birthfather.  In fact, when my birthmom found me when I was 18, puzzle pieces in my life did start to fit together... it just wasn't the fit I was anticipating.

2) I was an only child.  -- As such, I didn't have older / younger brothers and sisters to play with and show me the ropes socially.

3) I was smart / had a high IQ / genius (you know the drill) - When I was young, I was pulled out into special programs like Mentally Gifted Minors (MGM) & Gifted And Talented Education (GATE). Because I was already one of the youngest in my class due to my birthday being in late November, skipping grades wasn't considered a good social option. (Thank goodness for that because I already was way behind socially!)  As a female who supposedly had a propensity towards math, I was pushed into advanced classes, although quite frankly, I enjoyed my writing and drama classes far better! 

** In the future, I'll talk about how I deliberately tried tanking certain classes to try and draw attention away from myself... or perhaps as a cry for help.  I'm wondering if other Aspies did/do this? **

4) I was a tomboy. - I liked bowling, kickball, baseball, nation ball, tennis and hanging with the boys.  I did play with girls too in elementary school but for the life of me, I can't really remember what we "did" when we played....  I'm thinking we played together but I still sort of played individually.  Does that make sense?

** Incidentally, although I had an affinity for sports, bowled in college and even toured professionally for a short while with the Ladies Pro Bowlers Tour, that doesn't mean I don't have other coordination and sensory issues!  I never could do a cartwheel or handstand.  I had trouble tying my shoes growing up, twisted an ankle, knee or two at least once a year and to this day, I still often lose my sense of equilibrium!

5) I was overweight - Oh man, this is a big one... I was a very picky eater as a young child.  My favorite food was peanut butter sandwiches (no jelly).  I liked my food plain.  (Still do.)  I didn't drink anything carbonated. (Still don't, except an occasional alcoholic drink.)  Vegetables were not my friend.

** Emotionally eating became my vice and my disorder when I did not feel good about myself.  I can remember as young as middle school starting to binge eat.  I did it away from my parents.  It continued through college.  My weight has been a struggle for as long as I can remember and although I am now 120 pounds lighter than my heaviest, I still have a long way to go before I reach where I'd like to be.   I no longer binge but I fight the emotional eating almost every day of my life.  I wonder how many Aspie girls / women are like this and probably men as well?

6) I was naive / uncomfortable when it came to talking about the body / sex - I cut health class in high school because I couldn't listen to the talks about the birds and the bees.  The first time I ever cut class and it was for that, what a rebel!  I subsequently cut class because I couldn't bring myself to put my mouth on a dummy for CPR training. That totally freaked me out. (Still does!)  I didn't get why then. 

** Now that I am an adult, I want to be able to help other girls, young women and their parents in this area.  My "innocence" in school (how can one be so "smart" and yet know "nothing"?) led me to many awkward social situations in my college and early adult years with guys / men that I could not fathom how to deal with other than on a purely academic level.  (i.e. when I smiled at a guy, I didn't realize I was flirting.  I was the queen of sending and receiving the wrong signals.)

Apparently I came into my own "attractive" wise at some point in my late teenage years although for the life of me, I didn't see it then.  In college, among other awkward social situations with guys, I found myself sexually harrassed by a university professor and also became the victim of a stalker who caused so much havoc for me, I eventually felt forced to leave school.

After leaving the university and trying to make it in the "real world", I became a survivor of both rape which took my virginity (I was dating someone 4 1/2 years at the time and as a result, my relationship dissolved because I could not deal with the pain) and date rape subsequently thereafter (when I still didn't know how to say no.)  Although I would like to believe it was not my fault, my naivety and trusting nature with men and not being able to read appropriate social sexual cues may have been a contributing factor.  (It's hard for me to type this, please bear with me...)

My nagging suspicion is that there are more female Aspies / Auties in this quiet club than anyone ever talks about.  I want so much to find the courage to be able to speak publically to the Autism / Asperger's community and be able to have this topic explored....  to talk with parents... to talk with teens and young adults....  There is so much unspoken... but I am willing to share if it will help others....

~~~~~~~~~~~~~

I am going off on a tangent now... lots of memories just flooded through me and I'm having trouble processing where I want to go.  That happens a lot!  It's so easy to start writing about one topic and then get sidelined by another.  I'm tempted to delete this whole posting....

But right now.... in this moment....
I will leave it.

I believe God wants me to share of myself so that I might be able to encourage and help empower others to do the same.  If I share some of my thoughts and stories, however uncensored, unedited and painful they may be and tell them without worrying about mistakes, typos or editing, perhaps then my Aspierations of letting my light shine and being the person I was meant to be will come into fruition.

~~~~~~~~~

I think the point I was originally leading towards when starting my list of reasons why I felt like such an outsider was that I knew something about me never seemed to connect with most of the world but I could never pinpoint exactly what that was until I learned about Asperger's Syndrome and Sensory Processing Disorder.

Although the label doesn't define me as a person and dictate my goals and dreams, it sure explains a lot.  I wish I had known about it growing up because I had a lot of deep depression, self-hatred and emotional eating that might have been able to be prevented or treated at a younger age. 

As a Mom of two boys on the spectrum, I can now use my insight to help them along their paths and it certainly isn't too late at age 42 for me to make positive life changes as well.  I can be a better person, a finer wife, a more understanding mother, a kinder daughter and hopefully a better friend to the very few that I consider close.

I realize this has been a bit of a ramble but if you've made it through this far, THANKS!  What you are seeing is a caterpillar beginning to come out of her cocoon and transform eventually into a butterfly....

Until next time...

Come As You Are....
  Let Your Light Shine....

Tuesday, January 26, 2010

Recovering From The Flu - Back Into the World of Blogging

Hi Everyone!

It's me, Karen from Aspierations.  (Like it would be someone else?  Perhaps the Easter Bunny?)

I'm sorry I haven't blogged in a number of days. I got into a fight with a giant bug last Thursday night.  I think his name was Stomach Flu although he knocked me out before I could be formally introduced! 

For the past few days, my attempts at blogging between hallucinatory dreams and trips to see if all the bathroom fixtures were still intact have mainly consisted of thinking about writing, analyzing my writing (and everything else that came into my racing mind), writing 100 blogs in my head 68 times each, visualizing the screenplay for a murder mystery I've been writing in my head for years, watching the story come to fruition and gross billions of dollars, walking the red carpet (and not tripping), accepting my Academy Award (for both writing and acting) and thanking my husband, kiddos, parents, God and my Aspierations for making it all possible. (Yes, folks, Nyquil Nighttime Cold & Flu medication can be pretty powerful stuff...)

From time to time, the realization would hit me that I hadn't actually "done anything" in terms of putting fingers to keyboard, so further attempts to blog consisted of dragging my aching body down the hall from my bedroom to the office to sit at the computer where I would subsequently look at the computer screen.  Sometimes I'd even turn it on.

During the times that my AOL welcomed me to inform me that I did indeed have mail (and why wasn't I answering it?), it occurred to me that the letters on the screen made me quite dizzy.  As such, my valiant attempts at blogging would generally end up in me stumbling back down the hallway to the bedroom, trying not to bump into the walls that tend to throw themselves mysteriously in my way and then landing in my bed and crashing. 

I'm back at about 80% and wanted to thank everyone who left kind and well wishes on my twitter account, Facebook account and email. (Hey, when you have a virus, why not use viral marketing to spread the word?)

Now that I feel comfy with my bottom planted to the computer chair, I have emails and work stuff to catch up on but I wanted to make sure I got in a little personal blogging too.  My husband John from Life and Times of John Krejcha has been so awesome these past few days while I've been sick.  He really stepped up to the plate to help me out and I feel so grateful and lucky to have a man who doesn't mind doing that kind of stuff.  I tend to freak out a little bit when I'm sick and long for the days when my mom would make me chicken soup.  (Smells, tastes, sensory stuff are already a challenge for me but when I'm sick, it just seems to amplify.  I'm sure the Asperger's doesn't help.)

Our boys have been amazingly well-behaved as well.  Not too many meltdowns and lots of time playing with each other and their Daddy.  What a blessing!  Unfortunately, Justin and Ryan also recently went through a spell of sickness but fortunately, theirs didn't last too long and now they seem to currently be back to their chipper selves.

I have some work to catch up on but hope to be back to personal blogging again at Aspierations within the next 24 - 48 hours.  The positive thing about spending so much time in bed is that I was able to do some really interesting self-analysis and I came up with a lot of interesting future blog topics I'm looking forward to sharing with you.

One of those topics has to do with how I think that Aspies and those on the autism spectrum tend to naturally migrate towards others on the spectrum as well.   I also think that there are a LOT more adult women and men that are in their 30s, 40s and above who are not diagnosed but many will become aware as / if they have their own children.

I have a lot to share about this from personal experience growing up and as a Mom, I'm watching it take place with my boys now too.  Interesting stuff.  I look forward to hearing other perspectives too.

Feel free to say hi, hello or whatever!  Anonymous or not, it's all good with me!
Karen

Saturday, January 23, 2010

This is not a day to be sick!

Hello Aspierations blog readers!

I have been wanting to keep up the trend of writing here on my blog so that I will make a consistent pattern and hopefully attract a readership.  Unfortunately, I was busy with Count Your Beans work stuff on Thursday (gotta try and pay the bills) and then both Friday and today, I have been sick.

This is not a day to be sick!  I have so much to do.  So little time.  I know we all get 24 hours in each day but I often feel like I could use 36. 

I'm not a very good sick person.  Smells, tastes, textures, sensitivities to light and sound... all these things become magnified exponentially when I'm not feeling well.  Typing at the keyboard isn't a good thing.... which of course, I'm doing now against my own better judgement.  Dare I say, I probably get a little grouchy and emotional too.....

Our oldest son was also ill yesterday and today.  Our youngest stayed home sick from school on Thursday.  So something has been going around our house, we just haven't figured out what.  I'm guessing some sort of stomach flu.  It has been up to Super-Hero Husband to keep things relatively sane around here.  Thank you, John!  You're a true blessing!  I'm sure it has NOT been easy for him.  (As I type this, he's downstairs unwinding by playing Mario Kart Wii.... guess Mario & Luigi aren't just for the little boys anymore!)

I was hoping that typing a new blog entry would allow my mind to focus and stop racing in so many directions.  As I lay in bed most of the day, I kept thinking about how I recently had admitted to "the world" (well, the online world) that I was an adult female with Asperger's Syndrome.  I'm not sure what I thought would happen as a result, but it was nice to see that the world did not end.  No-one sent me flowers, a box of chocolates or a gift certificate to the spa but I honestly didn't expect that either.

I suppose I could have used a hug, an encouraging note of support or a "we still love you unconditionally no matter who you are".... but then again, I have the feeling that at this point, not too many people have read my blog that I personally know.

I would like to write soon about what it's like for me to be a woman with Asperger's Syndrome and what it was like for me growing up.  I'd like to share also what it's like to be the parent to two wonderful boys (10 and 3) who are on the autism spectrum.  We share many similarities and many striking differences. I'd also like to share my vision for Aspierations .... for it is way more than just this blog. 

If you have any questions for me, please feel free to ask.   This year I'm all about "Come As You Are" & "Let Your Light Shine" so I will try and answer as truthfully and insightfully as possible.

For now though, it's back to bed.  This sick thing is no fun at all!!

Best wishes,
Karen

Wednesday, January 20, 2010

A Typical Dinner with 3 Picky Eaters on the Autism Spectrum

The last two nights as I was sitting at the dinner table with my husband and two sons, I was checking out the  eating styles of our family.  Usually we have one or two water glasses spilled per meal despite all good efforts and best intentions.

Awhile back John got smart and placed towels underneath the chairs of our boys at the kitchen table. This indeed was a valiant effort and we can proudly say that a full 28% of spills are now caught on the towels!  (Hey, it's a start!)

Here is how a typical dinner in our household would look to a casual observer:

John does all the cooking because someone (not naming names but happens to be the house female) doesn't like weird smells and textures.  More often than not, the boys are not eating the same thing as the parents. As such, John gets to prepare 2 or 3 different meals per night.  This would help him hone his cooking skills, except as you'll see, he's the only one in our family currently embracing variety.

1) John (hubby & neurotypical) eats everything on his plate as well as leftovers from everyone else. Mix, match, whatever.  It all ends up in the same place... (his philosophy)  He uses salt and sauce and doesn't care whether his food touches.

2) Karen (me, an Aspie with sensory issues) eats one plain food at a time and takes sips of water in-between. No condiments for me. From time to time, I eye John's plate to make sure no offensive smelling food will be added.  (My husband tends to like a lot of stinky stuff and my sense of smell is like a bloodhound.  He can eat salsa downstairs and I'll be ready to gag upstairs.)

Unacceptable Foods & Drinks:  Most vegetables, sauces, condiments, anything spicy, anything not plain, anything with carbonation, coffee, cocoa and tea

3) Justin (our oldest, who has Asperger's Syndrome and sensory issues) has his food separated and as usual, it will be yellow or beige, crunchy, bland or plain.  If we're lucky, a divided plate will do.  More often than not it is cheesy noodles on one plate, corn on another, cauliflower on a third.  Separate forks for each!!  Should any of his foods accidentally touch or should there not be the right amount of cheese on each noodle, that portion of food would be "ruined" for the rest of the meal.  In fact, his whole meal might be ruined. 

Acceptable Foods for Justin:  Pizza (Pepperoni only - won't eat crust), McDonald's Chicken McNuggets (only brand), Dad's Cheesy Noodles, his Gram's Macaroni & Cheese, chips, Cheetos, Rice Cakes, Pretzels, baby carrots, apple, Old Spaghetti Factory spaghetti with mizithra cheese, Olive Garden breadsticks, white rice, toast cut into 4 equal triangles (but he won't eat the crust) Cheez-Its, M & Ms, chocolate ice cream.

Unacceptable Foods: Almost everything else, especially if it is a meat, sauce or is non bland.

4) Ryan (our youngest, who has autism and sensory issues) is sticking his hand in his water glass and pulling out ice to eat with his hands. Occasionally he picks up a fork, tries to stick it in some corn or other food item and pretend to eat.  Then he goes back to eating ice chips. Occasionally he will touch another food, sniff it or lick it and if it isn't to his taste, scream "YUCKY!!!!!!!!" and throw the food or plate across the table.  Ryan's aim is quite accurate and more often than not, the offending food item lands on John's plate.  To my chagrin and Justin's, John subsequently eats the "YUCKY" food.  Ryan giggles.

Acceptable Foods for Ryan:  It used to be almost anything so long as it wasn't hot, too warm or had fat on it.  In the past couple of months, he has gone from eating a variety of foods to not wanting to eat at all.

Unfortunately, Ryan is very oral and is always trying to place inanimate objects in his mouth instead of food. We are constantly having to watch to make sure he doesn't stick something in his mouth unsafe. Chewelry sometimes helps but he has to be redirected many times per hour.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

That's just a quick glimpse of a typical dinner at our table.  I plan to talk more about our odd eating habits in other blog postings but this is something I've been thinking about posting and I wanted to get it out into the blogosphere before I got distracted by something else.

When I was at a newly formed Autism Support Group meeting about a month ago at Ryan's preschool, the moderator asked what kind of topics we'd like to hear about or get help with.  One mom called out "getting my child to eat healthy foods" and every other parent except one raised her / his hand in agreement.

It seems like there are a lot of us picky eaters out there and it starts at a very young age.  I will share my own personal confessions of a picky eater in an upcoming blog because this is something I've struggled with since I was in preschool and when I was in junior high, I developed an eating disorder (compulsive overeating) which I am proud to say that I have recovered from (for the most part) but still deal with daily since after all, food is one of those things we need to stay alive!
If you feel like sharing (anonymously is cool too) , what have your experiences been with eating and food variance?  Are you or your child on the spectrum a picky eater?  What has been successful for you in trying to introduce new foods?

Monday, January 18, 2010

The Outing of A Gal with Asperger's Syndrome - What Did I Do?

Welcome to the second post of my Aspierations blog! 

I'm going to let you in on a secret.  I'd been wanting to make my first post for months but I was too anxious, too scared.  The fact of the matter is that this is the first time I am officially outing myself as a person with Asperger's Syndrome.

Am I ashamed of having AS?  No.  BUT, I'm not exactly sure how to deal with the potential response from family, old friends, business customers and aquaintances who might happen across this blog.  It's one thing writing to people I have never met.  That's a heck of a lot easier than pouring out my heart, baring my soul, allowing myself to be vulnerable and realizing that someone I actually "know" is possibly going to read this.  I don't have the best social skills, after all....

You see, I'm 42 years old and I've been living with the mask of a neurotypical (NT) my whole life.  That doesn't mean I ever felt like I "fit in" but it means my life history is a culmination of experiences where I often found myself "acting", following memorized social scripts and trying to assimilate into a world where I often felt like I was an outsider.  Being high functioning academically and having an entrepreuneurial spirit, I was blessed with a skill set that allowed me to found my own business. 

Workwise, that is where I am at today, working from home full-time running an online collectibles business called Count Your Beans Dolls and Bears (check my business blog) with my husband and raising our two children.  It's a good thing too because although I found traditionally defined "success" in the corporate world of the Silicon Valley, that lifestyle and culture was just NOT for me. 

Most people who see me will probably have no clue I'm an Aspie, unless they are possibly on the spectrum as well.  For most of my life, I think I did a pretty good job of appearing to "fit in"on the surface.

Maybe people who know me can shed some light.  Did my plain hamburgers and picky eating tip you off or was it my "unique" sense of fashion?  Was it the fact I always felt more comfortable with guys than gals?  Was it that I could memorize facts with ease but could never keep my desk and room organized? My interest in numbers, patterns, statistics and individual sports?  My clumsiness and awkward social graces? Or was it the fact that I was a quirky goofball with an odd sense of humor?  Feel free to comment in the comments section if you want.  I'm able to laugh about it... well, most of it.  Some of those 80s outfits I wore were just atrocious.

I'm sure there will be family and people who grew up with me, bowled with me, worked with me, perhaps even dated me that are never going to believe that I am on that wonderful and amazing entity called the Autism Spectrum.  Once they read more about it, they'll realize that not only am I a shining spectrum member but some of their teachers, friends, co-workers and perhaps family members are too! 

When I grew up, Asperger's had not yet been defined.  When we heard in the schoolyard that someone was autistic, it was someone whose characteristics were more prominently defined.  Think "Rainman"... Of course this is not how it is defined today but that was an earlier stereotype.

I was a tomboy and hung out with the boys during a lot of grade school.  I had a few girl friends in elementary school but a couple moved away and I didn't know how to keep the others once I got into junior high.   As I got older, I got involved in acting and other creative pursuits.  I was athletic and I bowled, played tennis and liked individual sports.  I lived in the Silicon Valley of California and was totally into computers and video games too.  (Shocker, I'm sure...)  In retrospect, I realize that a number of the people that I assimilated towards in friendship as I got older are quite possibly somewhere on the spectrum themselves.  When you hang out with people that are kind of quirky too, your idiosyncrasies become a lot more "normal". 

At any rate, I didn't fully realize I was an Aspie until just last year when I attended the Autism Society of America conference with my husband, John, my oldest son, Justin (10) and my youngest son, Ryan (3).  Of course in the 100s of hours of googling and reading research about autism since our kiddos were diagnosed with Asperger's Syndrome and Autism Spectrum Disorder respectively, I had a pretty darn strong suspicion I had Asperger's Syndrome as well.  I just had not processed, accepted and embraced it.  I was not ready at that point to be who I was or let my light shine.

Today I am taking that next step on the journey.  Although I was not a particularly religious person growing up and didn't attend a particular church, my parents had excellent morals, wonderful and kind spirits and I was brought up believing in and respecting God.

It was after I attended the Autism Society of America conference last July that I felt what I can only describe as a "calling" from God.  For perhaps the first time in my life, I felt that I was being directed to something bigger and better and that vision was Aspierations -- Come As You Are, Let Your Light Shine.  I want to help empower those on the spectrum and those who care for and love them.  I want to make a difference in this world.  When I was attending seminars at the ASA conference, it hit me hard that there were not a lot of adult females that were speaking publicly about their lives on the spectrum. As such, there were probably many more women out there living undiagnosed and wondering how to make sense of their lives.

I hope to be one more voice... a candid and encouraging one, a humorous and fallible one, an honest and inspiring one.  Although this post is probably more serious in tone than my normal writings, I tend to try and use humor and compassion when sharing anecdotes and reflections on life. 

Thank you for reading this!  I'll try not to make all my posts so lengthy.  It's something I always need to work on.  As my Dad would always say when opening up my holiday cards to him and seeing my handwritten sentiments, "what are you trying to do, write a book?"  Well maybe that too!

If you'd like to follow me, I invite you to do so!  Feel free to comment too. I'll try not to take it too personally!

Karen

Saturday, January 16, 2010

Welcome to the Aspierations Blog

Come As You Are ...
    Let Your Light Shine ...

Hi!  My name is Karen and I welcome you to the Aspierations blog!  I am the loving Mommy of two amazing sons on the autism spectrum and the wife to one patient and caring man, John.  He's neurotypical (not on the spectrum) but in this household, that means he's the one that is atypical!

Our oldest son, Justin (10) has Asperger's Syndrome and our youngest son, Ryan (3) has autism.  Both kiddos were diagnosed a month apart in mid 2008.  I will be officially diagnosed as an Aspie in 2010 and I came to the realization of my Aspieness back in 2009 when our family attended the Autism Society of America conference in St. Charles, IL.  (More on all that later!!!)

Although there are a lot of amazing people online and in the physical world talking about Autism & Asperger's (many of them female bloggers), I think it's important that there be even more positive female Aspie role models that speak to the Asperger's / Autism community and the world at large about what it is like to:

A) be on the spectrum (including glimpses, challenges and triumphs of the past, anecdotes from the present and desires for the future)

and

B) simultaneously parent children on the autism spectrum who have their own special needs (often conflicting with other family members), dreams and aspirations

Although I have my quirks and idiosyncrasies (such as the need to edit this first posting a gazillion and one times because it wasn't "just right"), I have been blessed with many gifts and talents as well.  Does that mean my life is a piece of cake?  No way!  Does it mean I'm feeling sorry for myself about it?  No way! (Well, sometimes... I am human, after all!)

My hope is that my blog will help inspire, motivate and empower my fellow journey travelers to come as they are wherever they are this point in time and to let their light shine and know that although they may often feel alone, there are others out there who can relate to what they might be going through.  I will try to be a positive and uplifting voice but an honest one as well.  I find looking at my life with humor and laughter is a lot more empowering than grouching and complaining, although you may see me do that too just to mix things up a bit and see if anyone out there is paying attention. 

If you are a parent, relative, caregiver, teacher or friend to someone on the spectrum or like me, you are on the spectrum yourself, please stick around!  I will be blogging frequently about my journey (past and present) and sharing anecdotes, resources, humor (yes, we Aspies do have that), musings and contemplations.

I look forward to sharing with you and maybe getting to know you as well...   Please feel free to leave me a witticism, feedback or musing in the comments section of my blog postings but if you don't, that's cool too!

Thanks for stopping by!
Karen