Easy Prey

Easy Prey

If children with social issues are a prime target for pedophiles, an Asperger’s kid is a pedophile’s dream.  This topic, as disturbing as it may seem, is a growing concern.  No longer is the pedophile just the weirdo on the playground or the deviant family friend or relative.  Don’t get me wrong, I am not trying to minimize the role they play in destroying the childhood of victims they choose.  I am trying to call your attention however, to the newer forms of communication and interaction these “people” now have access to.

We have seen it on the news repeatedly.  The dad who purchased the Xbox 360 and unknowingly let pedophiles into his home, to chat with his sons.  Teens are “friending” these people everyday - did you know you can make up an account, attach a picture and “friend” away?  There is NO accountability here, no verification of identity.  I have warned my children specifically about chat rooms - under no circumstances are they allowed to chat with anyone.

Opportunities abound in seemingly trivial websites, for example Warrior Cats RPG.  For those of you who aren’t sure what Warrior Cats is, it is a series of books written by Erin Hunter, each series an adventure involving fantasy and an animal world - primarily cats.  The website is a seemingly innocent extension of the book, allowing for play and not much conversation.  What I was not prepared for was the backdoor chat room I happened into, much to my daughter’s dismay.

I had noticed that Molly had been spending significantly more time in her room glued to this website.  For those of you who don’t know, one MAJOR flaw with the iPad is there is no capability for parental controls - any that are even attempted can be easily switched off in the general settings.  Recently though, she has been more private regarding her iPad, closing it when I enter the room.  I dismissed this behavior as a need for privacy.  My comfort level with this behavior quickly left when she became more and more focused about needing to get on the iPad at a certain time.

Last Wednesday I walked into her room and she was in the usual position.  Sitting at her desk engaged by whatever was on the screen at the moment.  When she saw me she snapped her iPad shut and asked me very defensively “what are you doing? Don’t look at that!”.  She then proceeded to get overly defensive and anxious wanting to log off (reaching and grabbing at it) of what she was doing so I wouldn’t “ruin” anything.

What I found was a conversation between Molly and someone else that to me had red flags all over it.  I was reading and thinking that somewhere a 50 year old man was sitting on the other end asking Molly how old she was and telling her he really liked her and wanted to be her friend, that he understood her............. I had and continue to have such a sick feeling in my stomach whenever I think about it.  In a best case scenario this person was actually a 13 year old, but I believe I found a predator who was doing his best to “groom” his next victim.  He was feeding on the child who doesn’t belong, feels different and has few if any friends.  He was isolating her and letting her know that he was there for her and really liked her - it is heartbreaking and disgusting, but he was effectively reeling her in.

Molly and I had a long discussion regarding this.  Allegedly, it hadn’t occurred to her that this was chatting.  I asked her if she had told him anything else besides the fact that she was 13.  Going back and reviewing their conversations I am hopeful that she is telling the truth.  She said she definitely didn’t tell him her “real” name, where she lives or any other information.  I used this as an opportunity to scare my daughter with facts regarding this type of individual and what and how they operate.

I told my very literal daughter that 1 in 3 women are sexually assaulted as well as 1 in 6 boys (and those are only the reported cases).  I also went on to explain how he targeted her, exploited her areas of weakness and in doing so how he was able to gain her trust and friendship.  Some may argue I went too far, but I felt (and still do feel) that the more information a child has to defend themselves the better.  I went on to explain what these “people” do.  I told her how they will arrange to meet with the child and then I also filled her in on all of the unspeakable things they do.

When I first took the iPad away she was in complete panic.  She was angry, volatile and threatened.  She couldn’t understand what I was doing and why I would want to disrupt her  Warrior “friendships.”  Post-explanation her demeanor was much different.  Molly was of course horrified to learn that there are people out there who would actually harm others on purpose and some for pleasure (my naive little one).  I literally had to take apart brick by brick the wall this “person” was trying to put up between her and the world - looking at each conversation and letting her know what this person was doing.

In hindsight, The Protecting God’s Children that I was required to watch in order to be a CCD teacher was a huge blessing.  This multi-day workshop was a mandatory part of church volunteer and Catechist training.  I sat through the movies that featured convicted pedophiles detailing how they would “groom” their victims and how they were eventually successful in their efforts.  All of these “people” had the same criteria they would search for in choosing their victim.  They looked for socially isolated, lonely, children who needed someone to form a bond with them.

As horrifying as this was to discover, it could have been a lot worse.  What if I hadn’t taken it away when I did?  How many months, weeks or days would it have taken for this person to continue grooming and retrieve confidential information?  

I write this post today hoping that all of you are monitoring what is going on in your home.  The Wii, Xbox, computers and social media are just a few of the newer outlets for these “people” to be able to reach out to your child.  You still need to be on guard for the “typical” pedophile and I think most of us are adept for spotting the adult that doesn’t “belong” to a kid at a public outing or those who are looking at the children in a way that just gives us the “creeps.”  Take a look at what your child has been up to.  It may seem radical, but remove computers and iPads from bedrooms.  I sleep better at night knowing that the access has been severely limited, but I still wonder...................

I would love your thoughts.

PuzzleMom

Then and Now

Thomas Jefferson, George Washington, Albert Einstein, Charles Darwin, Marie Curie, Temple Grandin, Bill Gates, Alfred Hitchcock, Sir Isaac Newton, Jane Austen, Jim Henson, Hans Christian Anderson, Michelangelo, Mozart, George Orwell, Beethoven, Thomas Edison, Henry Ford, Mark Twain, Warren Buffett.............

All are excellent role models and additionally have either been diagnosed with Asperger's Syndrome or high functioning autism.  Obviously, those who lived earlier in history displayed many of the characteristics and traits present in the modern day diagnosis.  The abundance of positive role models that exist and the volume of written materials help to support the theory of the "gift" and not on "fixing" them.  I recently checked out an abundance of materials written by Temple Grandin, Molly and I are reading them together.  Dr. Grandin's advocacy for autism and animal science are especially beneficial as Molly would like to be an animal conservationist someday.  Thankfully our zoos have amazing programs for the future conservationist as well and she will be spending a week learning about the animals, preparing their food and embarking on feeding (no pun!) her most high interest area.

I do wonder however, what life must have been like for these outliers who were noticeably different and probably ostracized by most of society.  I am looking forward to reading more of Dr. Grandin's book and what it was like to be her.  With my interest in historical figures, I do have to wonder can you be forced and bullied into assimilation?  A recent meeting with a therapist left me wondering (not for the first time) if I have Asperger's as well.  She mentioned that if we hadn't been tuned into Molly's idiosyncrasies she could have very easily fallen through the cracks and just been labeled  "a socially awkward, bright, young girl."  Hmmmm..........

Again, I wonder, is it possible to be forced or to choose to assimilate?  This is not by any means a poor me synopsis!  Everything happens for a reason, although at times it can be extremely painful, I truly believe this.  I was extremely awkward as a young girl and had merciless bullies.  One in particular used to pick on me to no end and make up things when she ran out of what was wrong with me.  I also remember a boy asking me why I walked the way I did.  I remember wondering what he was talking about? I made a mental note, discovered my arms didn't move when I walked and practiced my new gait.  My family was intolerant to my peculiar behavior and my teachers were useless - I actually had one who repeatedly called me "motormouth" in front of the entire class.  Did I consciously choose to make the shift in my behavior and assimilate?  Was my awkward stage that much different than everyone else's?  I remember a big shift in my ability to make and keep friends when I was in High School.  As in the books that we are reading helping with social cues that most with Asperger's don't recognize is the unfortunate fact that appearance is a large part of the internal judging of peers.  After a long bout as a chubby tomboy (yes, I ATE my feelings!)  I emerged eager to try on fashionable, beautiful clothes and also transform myself.  What is funny is that although I knew that I was smart, I was often labeled a flake.  Looking back on it now, I wonder if perhaps I was missing the meaning of what was being said as it didn't translate to literal meaning.  Actually being able to participate and socialize with a neurotypical social group may have been just what I needed to assimilate, although always feeling different on the inside.

What worries me the most though, for my daughter and other children and adults with Asperger's and High Functioning Autism is the desire to self medicate.  It took me a very long time to realize that I did that.  Through my teens, after college and beyond I often drank too much and enjoyed it tremendously because alcohol temporarily made me feel more normal.  I can look back on it now and use it as a life learning experience which will certainly allow me to share and teach others before they make the same mistakes.

As I mentioned before, I do believe everything happens for a reason.  Can some choose to assimilate and mask their eccentricities?  Yes.  If I do not have Asperger's I definitely have many of the traits that I passed on to Molly in particular.  Just ask my college roommates (YOU KNOW WHO YOU ARE!) about my aloofness and rude behavior when I arrived at school.  I continue on this voyage knowing that everything I have been exposed to on this wild ride - the bullies, the friends, successes, disappointments and a new found passion for advocacy will all be beneficial in the long run.  I do have to mention on a final note that I am so proud of Molly.  She embraces who she is and unlike me feels no need to assimilate.  She would not, under any circumstances remove her Asperger's - it is a part of her.  As painful as it may be to have the social struggles she endures, she has a very positive self-identification and confidence.  She still wakes up every morning eager to start the day and would prefer adorning her sensory friendly clothes in which to do so.  We recently attended a funeral and spent quite a bit of time trying to find something for her to wear that was both comfortable and appropriate.  I smiled as my little girl who has not worn dresses in several years put on a dress, two days in a row, and looked beautiful at that!  Would it last?  Would she suddenly transform? Of course not, but I wouldn't change a thing!

Gluten is like crack

I know that saying gluten is like crack may seem a bit preposterous to some of you and others will quickly dismiss diet as having anything to do with behavior, but some of you will nod your heads quietly in agreement knowing exactly of which I speak!  


Before the diagnosis, when Molly was 7, she fell off of the growth charts and began breaking out in hives regularly.  The hives were located all over her body and at times, alarmingly, her lips would swell to animated proportions.  I tried the elimination diet (removal of dairy, wheat, sugar, etc.).  I questioned every perceivable exposure and chemical that we came into contact with.  Another brick wall and doctors not offering any answers - just Benadryl &  epi-pens.  I began researching once again, this time symptoms as well as behaviors.  The Celiac foundation (www.celiac.org) had an abundance of information and many of the characteristics of what I was noting with Molly.  I removed gluten immediately.  For those of you who are new to gluten free or thinking of trying it, gluten can be found in:

• wheat
• rye
• barley
• malt
• modified food starch 
• hides in natural flavors
• glucose syrup
• oats (that are manufactured on machines that also process the above items)
• any items that share equipment with items found in ingredients above.

We have a running list of things we have tried - all are sensory tested and approved which is why we recommend (see list below)!  Soy sauce & broths/stocks are some of the trickiest items in the beginning as they both utilize wheat when not necessary as a filler & preservative.  Going gluten free may seem  a bit daunting, but with research it can be done with little inconvenience - there are so many more options available today than even 5 years ago!


There was a remarkable difference as soon as gluten was removed from Molly's diet. The hives and diarrhea that were my main concern immediately ceased. I had read that gluten sensitivity can affect mood/behavior but was not putting any stock in seeing benefits associated with this aspect.  Within 48 hours much of her hyperactivity and other strange behaviors (animal noises and others) were gone.  On a more detailed level her focus increased remarkably as well and diminished anxiety and increased social abilities (although certainly not neurotypical - but an improvement nonetheless).  I mentioned the removal of gluten to my then pediatrician who thought it may be a good idea to give her the blood test for Celiac.  The results came back negative, but they are only accurate in 7 out of 10 cases.  The doctors then suggested I re-injure her small intestine by exposing her to gluten again for 6 months and then having her re-evaluated and scoped.  No thanks!  I followed up with a pediatric gastrointestinal specialist who agreed - with our Northern European ancestry (Scottish, Irish & Dutch) better to just reap the benefits than injure, our course of action would not differ anyway.  Did I mention that she immediately began thriving as well?  She started putting on weight (finally) and jumped back on the growth chart.


Gluten products are such a mainstay of American culture that at times I have caved.  Allowing her to indulge in gluten inevitably reinforces our decision - always resulting in upset stomach, hives and behavior much like a pinball active in the throws of a pinball game.  It is a huge deal to a "tween" who is trying so hard to fit in and has to differ in diet as well.  She can't go to the lunchroom and order what everyone else is having (which is gross by the way, but our school district doesn't entertain the thought of changing its "healthy choices" to actually be healthy & nutritious).   I'm not asking for an abundance, just some healthy choices for those who are gluten free aside from nachos and ice cream and the occasional protein smoothie.  I am amazed and a bit ashamed of our society when I look at European lunches that are provided for their students.  The selections are undeniably healthy and lack all of the preservatives and chemicals our students eat on a regular basis.  The old adage "You are what you eat" should make Americans cringe.  There is a reason that European countries no longer accept our genetically modified, pesticide rich exports.


Upon choosing a gluten free diet for Molly, I soon became a frustrated mom trying to find good foods for my daughter and coming up empty handed.  I began experimenting with different brands, liking very little and loving even less.  After many trials and errors (just ask my family!) I developed my own flour by mixing white rice flour, long grain rice flour, potato starch, sweet rice flour, tapioca starch and xantham gum (yes, it is for sale!  See our website for further info: www.sugarmagnoliabakingco.com).  Unlike some of the mixes we tried initially it imitates cake flour and isn't grainy at all.  I also began a baking company - selling both GF and regular goods.  We are still formulating recipes and will be trying to release our cookbook "Gluten Free with Sugar Magnolia Baking Co." within the next year.  We also found a great way to donate money to Autism Speaks by selling our puzzle piece cookies.  For every dozen cookies that are sold $5 will be directly donated to Autism Speaks.  Although we will feature other philanthropies Autism Speaks will always be listed.

It is worth noting that there has been a reported incidence of "leaky gut syndrome" associated with Autism.  I know many who are on a GF diet, some also remove dairy and are GF and CF (casein free). Removing casein can be remarkable, especially in those who struggle with communication.  I will never understand those who are so quick to dismiss diet as having a role in their child's/client's development, especially neurological.  In the very beginning, I questioned the role diet/supplements may play, asking a well-respected pediatric neuropsychologist his thoughts - he dismissed, even chuckled a bit at the mention. I am not stating that your child will be "cured".  I am however, stating that there are proven benefits to eliminating certain aspects of your child's diet that could be hindering their development.  As in the Autistic Community as well as in the Neurotypical society 

"You are what you eat!"

Good Gluten Free Finds:

You will note that most of these are snack foods - we substitute many of these when not eating fresh fruits & vegetables or other non-boxed food!

Please note: Always check labels! Companies are always making changes!

ALL SCHAR PRODUTS (except crackers) - this includes pizza crust, bread, pasta, etc.

Trader Joe's Rice mac & cheese

Trader Joe's chicken tacos

Trader Joe's Taquitos
Annie's Rice mac (close 2nd)

Bell & Evans Air chilled chicken breast tenders
San-J organic tamari (wheat-free soy sauce)
Pamela's GF pancake/waffle mix
Yoplait yogurt (most flavors)
EnviroKids Panda Puffs cereal
EnviroKids Leapin Lemur cereal
Vans Frozen Waffles GF
Costco rotisserie chicken
Pacific chicken broth
Pacific roasted pepper/tomato soup
Quinoa pasta 

Bionaturae pasta (I buy this in cases from Whole Foods) - best yet!
Mrs. Mays products (any that are gf)
Mi-Del chocolate chip gf cookies
Mi-Del Ginger snaps
Ians cookie buttons cinnamon
CheeBee Rolls (frozen)
Kinnickkinick chocolate doughnuts (frozen)
Tostitos organic chips
Glutino frozen pizza
Trader Joe's GF granola
Kinnickkinick frozen pizza crusts
San-J szechuan sauce
Glutino lemon wafers
Boar's head pepperoni

Not enough love

There is not enough love to go around.  I'm not speaking of myself but in what I observe in everyday life.  The lesson that I try to teach to all of my children (in particular my Aspie) is to be nice to EVERYONE.  No, you do not have to like everyone but yes, you do indeed need and have to be nice.  It would be unrealistic to think that you had to like everyone or that everyone had to like you, this is something I learned much later in life, but what an epiphany it was!  Too many of us approach life like we are stuck in a traffic jam.  I often laugh when I see someone that I know and they are annoyed by another driver, the facial expressions and physical gestures that emerge paint a new portrait, amazing the things we see when the thought is no one is looking.


I have NO tolerance for meanness.  I used to, before Molly was born.  It bothered me a bit but not nearly in the same realm as it does today.  I am the teacher or parent in the room who nips bullying in the bud and will use it as a life lesson.  We should learn to accept and appreciate the uniqueness of others.  I heard somewhere (I can't for the life of me remember where) - "True character is defined by how you treat someone who can do absolutely nothing for you" -  I have adopted it and made it one of my life tenets, a  few others are listed below.  We do have a growing list that we keep - most are Christian based.    I was once told by someone in no uncertain terms that her family was "the most religious" in the family.  If Catholicism and Christianity are measured merely by Parochial tuitions and not by everyday actions our society is in some serious trouble.


Bullying takes place in many ways, shapes and sizes.  It occurs on the bus when things are thrown at someone or intimidation is used.  Hurtful comments that are made with the intent of making someone feel bad is bullying.  But bullying also takes place in many other forms - not just in teenagers, but adults as well.  Just as bad as the girl who looks at others who are different and quirky and labels them "freaks" are the family members who do just as much damage to their own flesh and blood.  We went to a family gathering at Christmas and to say there has been a family riff on my husband's side would be an understatement.  The kids were very excited to get to their aunt's house and see all of their cousins and their aunts & uncles.  It didn't take long for Molly to look at me and say "Mom, why aren't they here?  I bet they just don't care...."  I made up something on the spot that this part of the family had made other plans first and perhaps they would be there later.  How do you explain to an eleven year old that we drove 5 hours to spend time with family, but her cousins and aunt and uncle couldn't drive 15 minutes to spend time with them?  My husband just went home again recently for my nephew's graduation from high school and again, they didn't show.  Molly didn't ask this time, she interprets  and internalizes everything extremely literally - I don't think she will ask again.


It is one thing to be not nice.  It is another to set out to deliberately hurt feelings.  There will certainly be parties that all of us will not be invited to or that we really wanted someone to attend our own and they couldn't make it - to think this would not happen would be unrealistic.  To deliberately set out to instill hurt in others is inexcusable.  Who has a birthday party for their child and thinks even for a moment that is okay NOT to invite their grandmother?!  


What I do expect however and deserve is common courtesy.  I expect family relations to be safe-havens for my children.  I want them to look forward to trips to visit with family members.  The positive in all of this is that life is full of lessons.  We know how we would like our children to treat everyone.  We know that today we are setting the examples for our children, they will model our behavior towards friends, family and strangers.  Does Molly or my other children understand this unraveling of the family?  Probably  not, as an adult I am not quite sure I grasp it either.  My answer to the original question Molly asked, would probably be no, they don't care.  There is nothing we can do, we can move forward and be sure that we don't treat each other that way and that when we grow up we certainly don't think it is EVER okay to treat your parents or your siblings like that.  We are family and we won't let anyone separate us.  If you have someone in your family with whom you would like to make amends - please do so - we all know life is too short and there are no guarantees.  To my family - I love you all & am grateful every day for your support and love!  Until next time...

1. Live honestly- Be honest with yourself, true to your heart and be straightforward with others. Be honest with others, but take care not to harm them with words they may not be prepared to hear. If you don't have something NICE to say, keep it to yourself.

2. Live authentically- Live what you love to do. Find your passion and take time out of each day to pursue your dreams. They may not come overnight, but given time and persistence if you follow your heart, your dreams will become reality.

3. Think positively - don't dwell on the negative in life.  Find the positive in each situation (even if it's really difficult), and positive things will come into your life.

4. Take time to relax- Being type "A" all the time can take it's toll on the mind and body. Take time for yourself to unwind. Do something you enjoy and calm your mind and spirit. Be peaceful for awhile.

5. Give of yourself, don't expect anything in return and it will come back to you ten fold. Practice random acts of kindness and you will be surprised where it takes you.

6. Keep your body and mind moving.  Nothing is worse than stagnation.  Exercise your body and mental power.

7. Value your family- Take the time to love and appreciate them, for you never know when they may be gone.

8. Trust your intuition- Follow your gut instincts and listen to the little voice inside your head. Chances are that it is there for a reason.


9. Don't judge- You never know where someone is coming from unless you have walked a mile in their shoes. Keep an open mind, an open heart and a welcoming smile.


10. Don't hold resentments- They will eat you up inside. Work to solve issues rationally. If they can't be solved, put them out of your mind and move on. Life is too short to harbor grudges and animosities.

Our next topic will be 

Gluten Free for me!

Who am I?

When I decided to start this blog, I felt it important to address the feelings and issues that arise with everyone within our family - not just our Aspie. So let's begin with ME.

Who am I?  I seem to have gotten lost in the shuffle and lately that fact has been extremely disturbing.  I have fallen into that black hole of caring for everyone else and not taking any time for myself.  I have volunteered for everything under the sun involving the kids.  I am in the process of handing over the keys to all of those activities and have begun to say NO for next year when asked.  I must admit, it feels good (guilty, but good) to say no.  All of the time that I have been putting into making everyone else's life better can now be spent making my own life (translation: my family's life) better.  Sound selfish?  Maybe it is, but it is certainly time.  Once upon a time I was grateful to take the time to work on myself - especially physically.  I was in relatively good shape, golfing, spinning and strength training several times a week.  I was in a good place, physically and emotionally.

Somewhere along the way, whether due to the fact that we have moved several times or just the fact that life goes on, I got lost.  I have sat and pondered my identity quite a bit lately, soul searching.  I just finished my masters degree and have diligently been looking for a job (to no avail).  My frustration level has been running high and I have been easily irritated.  I felt it was time to take a good look in the mirror.  Why did I let myself get lost?  What am I going to do to change this?  Time to get busy!

Time to get back to the gym.  Need to dust off those spinning shoes!  Yes, unfortunately with irregular exercise and a home based business that is a bakery I have gotten a bit squishy and added SEVERAL extra pounds to my body. There's a healthy, athletic, spiritual, dynamic person under here and I need to get her up and running and out of this neglectful rut.  The benefit?  While taking time for myself, Molly and I can take yoga classes together, lowering both of our stress levels :)

The gym is really just the first step of my upcoming metamorphosis.  Small steps..........

Take time for yourself.  Do not feel guilty about it.  A healthy, physically active mom is a GOOD mom, what better way to set an example for your kids than by living it?!  Get your hair done.  Have a massage. Go out to dinner with your husband/wife.  Read a good book.  Cook a great (healthy) meal.  Give back to yourself first and foremost, if you don't realize how important you are, why should anyone else?

I'm worth it.  It took me awhile to realize it once again, but I AM worth it and so are you!  Jump in and recommit to yourself - you are not alone & it is never too late to get moving!  Join me.

Telling your child she has Asperger's

I guess perhaps we should start with how not to tell/explain to your child that he/she has Asperger’s Syndrome or any other disability.  If many of you watch Parenthood, which is one of our absolute favorites here is a clip from the show when Adam and Christina tell Max that he has Asperger’s: 

http://www.nbc.com/parenthood/video/ep-218-the-runners-stumble/1307085

I may have practiced that one before I sat down to tell him.  We had already told Molly at this point, and after watching this clip it was one of those rare instances where I felt I should pat myself on the back (these moments are especially rare lately).

For many denial is a way of life.  They somehow don’t see the problem or choose not to.  Our experience has been different.  Molly started life just as most other children do.  I had a normal pregnancy, delivered her at 40 weeks and breast fed her until 14 months.  She was alert and all developmental milestones occurred early.  She has always been curious and as I mentioned before just has a joie de vivre!  The only characteristic I would note looking back - her sensory issues have existed for as long as I can remember.  I just wasn't aware of what was going on, as she was my first child, that was just Molly.   When she entered school as a kindergartener life started to change.  

Suddenly odd behaviors started to emerge.  Strange animal noises were present at inappropriate times as well as many anxiety issues - these became significantly noticeable in first grade.  I had the benefit of being a first/second grade teacher before she was born and as such was very familiar with “typical” behavior for this age. Something was “off” and we searched high and low, hit brick walls, had several misdiagnosis and by 4th grade still nothing.

I was struggling trying to help her and failing miserably.  The only way that I was succeeding was providing her with a safe place and trying to focus on her strengths.  As I have said in a previous post I felt that she had so many of the characteristics of Asperger’s Syndrome (apart from her brilliant sense of humor) that I started purchasing books and reading about it, searching for tools.  Luckily, Ms. L. at school had also observed Molly’s behavior and called.  Legally, school specialists are not allowed to diagnose.  She proceeded to ask me if there had ever been a diagnosis for Molly.  I shared with her that she had had a misdiagnosis of ADHD (which she does actually have as a co-existing condition) but that I had always felt she had more of the characteristics of Asperger’s.  Ms. L. then proceeded to tell me she was so glad to hear me say that as she felt as though (with her experience dealing with these kiddos at school) Molly had those characteristics as well and the sense of humor characteristic is actually a misnomer.

I immediately called and scheduled and appointment with a notable Pediatric Neuropsychologist and Molly and I were put on a wait list for an all day panel of tests.  While we waited for the results I was reading several books at once, looking for some help and suggestions.  Luckily, falling asleep is a troubled area for Molly.  At this point I would normally go in and lay down with her for a little while trying to help with some of the anxiety and quiet her day.  It was at this point that I took out the book Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family. I had left it in her room hoping that she would read it on her own time.  After a few days of suggestions I grabbed the book and jumped on her bed.  Laying there as we did many nights we started discussing the day and I brought up Asperger’s.  I told her that I thought she may have it, but regardless of the diagnosis she has many of the characteristics and as such maybe we would find the tools to help her inside.  

I went on to explain (before we opened the book) that Asperger’s comes with strengths and challenges.  We started with the strengths focusing on her math and science abilities, her strong vocabulary and her amazing writing and reading skills and that these have all been fairly effortless for her.  Our discussion moved to discuss other kids at school who need help with math and other subjects, they try and try but just can’t seem to grasp it and need additional help in the classroom and at home.  She knew several kids in her class that needed these type of interventions.  We then addressed the issue of her struggle with social norms and friendships.  A lightbulb went on.  “Oh I get it!” she said.  “I am really good at those things at school, but have a problem with the social part!”  Explanation complete.

The book is a story about Adam and takes the reader on a journey of what it is like to be him.  It focuses on his high interest areas, upper body muscle weakness and many other similarities.  I read through it that night and I will never forget the look of peace on her face.  She was so relieved to hear that other people felt just like her, that she was not alone.  Which is exactly why I write this blog for those of you who feel you are, you are NOT alone.

Don't Judge Me

People watching becomes a continual ritual when you have a child with Asperger's.  Whenever there is a social gathering I ALWAYS worry that some sort of meltdown or inappropriate response will trigger a reaction from adults.  It's not Molly so much that I am worried about but the continual disappointment at the way others handle situations with children who have special needs.

The fact is that most people don't often show common courtesy regarding their body language in relation to situations of annoyance.  If any of you have been to a local school board meeting, there is never a shortage of rolling of the eyes or the shaking of heads - all by board members sitting at the BIG table for all to see. This unfortunately is something we run into frequently.  I am amazed and saddened by reactions of adults on a regular basis.  I have been amazed in a positive way by people who are warm and seem to take it all in stride, thankfully most of my friends are like this and were way before the diagnosis.  Pleasant surprises are always welcome, the disappointments are, well.......disappointing.

Unfortunately family is not exempt from showing their displeasure and unfortunately are also vocal.  Diagnosis or not shouldn't you attempt to know a child, specifically a niece or nephew, grandchild or cousin? Knowing what motivates them, their interests and other aspects, also not being on the spectrum comes in very handy when monitoring facial features and body language to see how tone of voice affects a child.  When you raise your voice and scream at a child and their face contorts with fear, that is not a good thing.  My children are terrified by one of their Aunts and her disciplinary choice - screaming to get control.  Another similar reaction from a family member at Christmas as the stimulation was high and excitement uncontrollable - a brother in law who would grimace and roll his eyes at Molly's behavior (also someone who suggested repeatedly that we "smack" the behavior out of her when she was younger).  Don't get me wrong, not all family encounters are bad or full of drama.  Sometimes we have no inappropriate behavior - or we do and a family member will pleasantly surprise us.  I have another sister-in-law (a specific case of no diagnosis needed, just get to know the child!) who has always made an effort to get to know Molly and as such knows to lower her voice and talk with her about things she likes.  She also knows, whether it is innate or researched, to focus particularly on her high interest areas.

It has become increasingly simple to narrow our group of friends to those who sincerely care and don't judge.  We had an incident recently where Molly was interacting with a group of younger kids and didn't stop what was becoming inappropriate (children going into the upstairs rooms at a friends house).  Unfortunately with most social situations Aspie kids have to learn after the fact how they should have handled a specific situation.  This ultimately leaves inappropriately handled scenarios, sometimes very inappropriately.  Social norms are placed on these kiddos and they are expected to act their age.  Which, by the way is something you NEVER say to an Aspie!  Molly took the fall for that one as she was the oldest and how do you explain?  To most it sounds as though you are making excuses, so we offered the learning experience to Molly and had her write a note of apology.

What I would like you to take away from this entry is DON'T JUDGE ME!  Don't judge me in the grocery store when my child is having a meltdown.  Don't look at me like I am a terrible mom!  Do the same for others too - if you see something going on don't give the look of disapproval - you have no idea what is going on with this situation or family.  Maybe the child is not really a spoiled brat and just has issues that you could not possibly comprehend.  Either give the mom or dad a knowing, supportive smile or just ignore and move on.  Comments, glares and stares are unwelcome and uneducated!  No, not everyone needs to know the diagnosis of your child - that should not be the defining factor in how you and your family are treated when a meltdown or some other episode occurs.  We have made certain those who spend a significant amount of time with Molly know the diagnosis and suggested some reading for them.  Sort of getting off track here, but Can I Tell you about Asperger's and All Cats Have Asperger's are two good places to start.  My hope is that by reading this edition of our blog you can find some empathy for the parent attending to the meltdown or other inappropriate action at Costco or the grocery and you don't cast judgment.   Thanks for reading!

The Gift

Yesterday was "shine a light on autism" calling for recognition of the autism epidemic (that's right, it is now officially an epidemic as it affects 1:88) in our country thanks to Autism Speaks.  The Bean in Chi Town was shining with blue light last night - how cool is that?  Merchandise Mart also displayed blue lights at the top of their building for several days. We are very grateful, but we've a long way to go.

It's been quite an adventure thus far.  I'm sure it will be full of even more jokes, drama, laughter, tears, bickering and frustration in the time to come.  You may be thinking that these characteristics are totally "normal" - whatever that means. This is our "normal" and I will be sharing our triumphs, challenges, frustration, pride and more in support of autism awareness and parents and families who often feel isolated and alone.  You're not alone!  I can't tell you how relieved I am to hear/see other's stories and know that these things happen to other people too!  Onto The Gift...........

We have known that Molly has Asperger's Syndrome just going on 2 years.  It's funny, I had always thought she had so many of the characteristics of Asperger's but all of the literature I read discounted having a sense of humor.  The descriptions were universal in stating that a sense of humor (due to the literal nature of their interactions) needed to be absent and Molly is FUNNY!  Unfortunately, this misnomer got in the way.  I will get into the way we presented her with the information down the road - I wouldn't want to bombard you with too much information all at once!  To make a long story short we knew that something was "off" and struggled to find an answer - I was so grateful when we finally had a diagnosis and could actually begin to help her. All of the things we have tried that have worked/not worked will also follow - I've a feeling I won't be running out of anything to share anytime soon!

Molly is often down on herself.  But amazingly she wakes up every morning happy to see the world and most importantly to go off to school.  It has taken her awhile to form a group of friends, but thankfully she has a really nice group and even goes into town with them on Friday's after school for ice cream or whatever the treat of the day is.  If asked what she would change about herself, surprisingly enough Asperger's does not come up, gluten intolerance is the key changeable offense.  I don't know many who have her natural ability to see the beauty where others see nothing.  She is kind, sweet, funny, quite possibly the most empathetic person I know and so smart!!  As with other Asperger's kids people have always been blown away by the early vocabulary (complete, intelligent sentences by 12 mos.).  She also has a natural affinity for math, taking HS algebra as a 6th grader - her homework is something I stay away from.

Early on after the diagnosis I sat down with my other two children and we had the conversation regarding home being your "safe" place.  We had always discussed this in other aspects, but it was important to let them know that their sister may be feeling a bit out of sorts and there is of course the "label" factor.  It was actually several months before I heard my son taunting her and telling her she was reacting a certain way because she had ass-burgers (note: he is not a mean child, they push each others buttons like crazy).  She looked right at him and said "My Asperger's is a gift isn't it mom?!" with a proud unwavering knowledge as she has heard me tell her this repeatedly.  I do believe Asperger's is a gift.  Molly has taught me to look at things differently.  I see the beauty in things I never would have noticed before.  I thought I had patience before, but now I have it tenfold.  Don't get me wrong, there are of course days when I want to rip my hair out and yell at the top of my lungs due to frustration or temper tantrum, but those days only make me appreciate the good ones all the more.  Comments are welcome as well as any questions you may have.  I will be posting weekly and would be more than happy to share any information I have or forward you on to a resource that I find invaluable.  All of these will reveal themselves in upcoming posts.  Thanks for reading!