Friday, February 26, 2010

A Trip To The Pediatric Dentist with our 2 Boys on the Autism Spectrum

I have a confession to make.  It's been awhile since I've personally been to the dentist.  Admittedly, I've had some apprehension.... well, a lot of apprehension.

Why? A few reasons:

1) The SMELL -- There is something about a dentist's office that just doesn't smell right to me.

2) The LATEX GLOVES -- Hate these... the smell, the texture, the taste (not that I eat them but occasionally I recall a taste of latex glove hitting my tongue)

3) When I was young, I had to have 4 of my teeth pulled out at one time.  The age of my mouth was always behind where it was supposed to be.  My teeth refused to meet their milestones and finally, the dentist ended up having to yank them out.  I don't remember this being a pleasant experience, although in retrospect, the happy gas wasn't all that bad!

4) Braces & Headgear -- The braces weren't so bad but I HATED the headgear!  

5) I don't like someone sticking their hand in my mouth and scraping around.  But then again, who does???

6) I had a moody orthodontist -- Some days he was really nice and other days he seemed really grouchy.  I always remember him having to say "OPEN" multiple times.  Even though I tried to keep my mouth open, it just sort of reflexively shut when something foreign and unappealing went inside.  Admittedly, I tried very hard to obey and follow rules and when I had headphones on and was watching the TV overhead, it made things a lot easier.  I'm not sure why it seems like they always had soap operas rather than cartoons but this gave me a chance to observe adults doing what looked like very silly things so it wasn't really that bad.

I have to say though that despite my apprehensions, I've been blessed with a healthy mouth.  I've never had a cavity and I always remember my orthodontist telling me as a kid that I had "special spit".  That was fine with me because the less time he spent time in my mouth poking and prodding, the quicker I could get my toy from the toy box and get out of there!

As an adult, I have to say, I sometimes miss that toy box!

At any rate, as I was initially saying, it's been awhile since I've been to the dentist.  My husband also has a real apprehension for going.  Dare I say, I think he is a lot worse than me.  He's not sure why.  His Mom worked for a dentist for many years and he thinks that might have something to do with it. 

John hasn't been so lucky with the "special spit".  In the time I've known him, he's had cavities and fillings and caps and other stuff I thankfully have never had to deal with.  I can understand why HE doesn't like to go to the dentist because it's always bad news and it's always an opportunity to open the pocketbook further.

When it comes to our kids though, we have to remember to put our fears aside.  I recently found an excellent well-established and friendly Pediatric Dentist Practice for the boys here in Vancouver, Washington and both Justin and Ryan had their first dental appointments on Wednesday with Dr. Peter Lubisich and his dental assistants.

The place was very kid-friendly from the moment we stepped in.  Justin's last dentist was in California and this was Ryan's very first visit.  This was also their first dental appointment since each had been diagnosed on the Autism Spectrum.

We had called in advance to make sure that the dentists were experienced in working with kids with special needs and it turns out, they've had a great deal of experience.  We were welcomed warmly when we arrived, filled out paperwork for each boy and watched as the boys were led back to a game room area complete with X-BOX video games, cars, trains and other activities to keep them occupied.

I was worried about how Justin (10) would do since he doesn't like a whole lot of stuff in his mouth and has very particular food tastes.  He likes Aquafresh Toothpaste but would he like what the dentist offered?

I actually thought Ryan (3) would be okay with the "mouth" part of the exam because he, unlike his brother, enjoys almost everything going into his mouth.  I wasn't sure how well he'd do on following directions but given that he recently sat in a barber chair by himself for the first time for his first official "big boy" haircut, I thought maybe things would be okay.

It really couldn't have gone much better!  The dental hygienist was amazing with the boys.  She met with us first to hear our concerns and to go over the special needs of each boy.  She asked us for tips and techniques and I shared that if Justin is given a play-by-play of what is going to happen, he will respond much better than to be surprised.  With Ryan, one had to be careful he wouldn't swallow the wrong stuff.

Both boys did a great job sitting for x-rays, cleaning and a full exam.  Justin was not keen on the grape gritty toothpaste (I recall a YUCKY horrible banana toothpaste from my days as a kid in the dentist's chair) but he handled it all like a trooper and John and I were so proud of both Justin and Ryan.

We met with the dentist afterwards while the boys were back to playing with the X-BOX and cars and Dr. Lubisich was kind, professional and I felt that I could trust him right off the bat.  Two of his adult sons work together with him and I think it says a lot about a family that the three of them all enjoy dentistry and working with kids.

As it turns out, Justin is going to need orthodontic treatment at some point in the next couple of years. This really isn't a surprise and I've prepped Justin for this with stories of my own childhood braces for a few years so that it wouldn't come as a big shock when the time is right.   We were given a consult to an orthodontist in the same building and we'll be seeing her in the near future.

Before we went into the appointment I said a lot of prayers because quite frankly, I knew that there was a LOT that could go wrong.  Thankfully, a LOT went right! 

Here they are with their new toothbrushes and new toys from the Toy Box!  (Glad to see that tradition is still around...)



I would highly recommend the Drs Lubisich Pediatric Dentistry practice if you're in the Vancouver, WA area.

John and I even got a new referral for ourselves.  If the kids can do it, then so can we!!! 








Friday, February 19, 2010

Parent Check & Connect Meeting - Thoughts about Autism / Aspergers Prevalance Ratios

Last night I attended a Parent Check and Connect Meeting at our oldest son's elementary school.  It was for parents of children on the autism spectrum whose kids were participating in the school's Social Skills class. 

The meeting was from 6:30 p.m. - 7:30 p.m. which was fortunate timing because I wanted to get home and check out the latest installment of Survivor 20: Heroes vs. Villains with the family. (It's about the only time of the week that John and I actually watch a prime time show at its scheduled time rather using Comcast On Demand or TiVO for a 1:00 a.m. "after the kids have fallen asleep, our work is done and I need some down-time before I can fall asleep" viewing.)

John and I are big CBS Survivor buffs and we have watched every season since the beginning.  Justin has too, although he was an infant in Season 1.  Ryan watches with us but mainly for the theme music!  The rest of the time he plays with his cars on his floormat!  If you want to check out some of our Survivor commentary, check out my Karen's Cornucopia of Creativity Blog or the Life and Times of John Krejcha blog.  Weekly updates, good times!  
 
Okay, I digressed.  If you're a die-hard Survivor fan, you'll understand! 

Back to the meeting.  I went by myself since kids aren't invited to the meeting and one of us had to stay home with Justin and Ryan.  Respite care is very hard to find for us and it is rare that John and I ever get out.  Now that Ryan is almost done with his potty-training (just wearing diapers at night), we're getting brave enough to think about babysitters again.  In fact, we even hired one of the neighbor girls for a couple hours on Saturday while we attend Justin's Cub Scout Blue & Gold Banquet at the local elementary school.  I would have loved to bring Ryan but last year he was quite a handful including one amazing sprint away from Mom onto stage during the boys' award presentations and well... it was a bit embarrassing to say the least!

Justin graduates from 5th grade in June and goes into middle school in the Fall. John and I are trying to make sure the transition for him is as smooth as possible.  Once a month the elementary school offers a class in the evenings for parents to help keep us connected with what's going on at school with our kids and so far the topics have been very interesting and applicable.  Last night's meeting was about Strategies for Organization -- Preparing for Homework and the Real World.  (I will blog about this later as there is a whole lot to be said here!)

Needless to say, there are big changes from elementary school to middle school and I think we're all feeling the anxiety even though it's still 6 months away!

Justin has a diagnosis of Asperger's Syndrome and from what I understand, his particular Social Skills group consists of a few Asperger's boys and 1 or 2 with High Functioning Autism. (These are the ones that are mainstreamed into regular classrooms during the day.  They have special center based classrooms as well but I don't know of the numbers there.)

In Justin's school, there are approximately 125 children in 5th grade and I know of at least 4 boys diagnosed on the autism spectrum, 1 that is not diagnosed but all signs have pointed to that he should be (we know this boy and his family) and at least 1 or 2 kiddos who fit into the ADHD group.  I'm not sure about the girls but I know that girls are often underdiagnosed or not diagnosed until later on.

Earlier this year, the CDC updated their website with new research results showing that the average total Autism Spectrum Disorder prevalence in 2006 (children born in 1998) was 9.0 per 1,000 children, which translates to one in 110 children.  Here is a link to that information which has been quoted on many websites and in a lot of new literature about autism.

My oldest son's elementary school may be an anomaly but 5 in 125 is a 1 in 25 ratio...  (and I was being conservative with that 5 in 125 number.)  I am curious to hear from other parents what kind of ratios they are seeing in their schools?
Our youngest son is in an amazing preschool that specializes in working with children with development disabilities or delays.  They have done so for 20 years, although recently they have had funding challenges and we have heard rumors that the school is potentially in danger of closing down if additional funds aren't secured.  Apparently they have been seeing an increase in autism prevalance over the past few years as well as they watch graduates from the state's Birth to 3 program transition into their 3 - 5 year old program.  Ryan just started this preschool last Fall and has one more year before he will hopefully transition to Kindergarten.  I hope the schools will be ready for this new wave of children.

I have a strong suspicion with so much more emphasis being placed on early diagnosis and Autism Awareness that there will be a higher percentage of kiddos diagnosed on the spectrum in 2010 than there were back in 2006 when the CDC study looked at those born in 1998.  My two sons were born in 1999 and 2006 so their classes / peers would not be included in the most current research statistics.

I've attended around eight relatively informal autism support group meetings here in Vancouver, WA for parents of kids on the spectrum in preschool through elementary school.  Each time there have been at least a dozen attendees, sometimes a couple dozen.  Many attendees have more than one child on the spectrum.  Some of the kids were born in WA, some in CA, some in OR, some in other parts of the country.  This is the upcoming wave of students that aren't yet in the new statistics.

As economic times are tough and more and more educational services get cut, what kind of services will be available for our children?  The health care industry refers us to the school system.  The school system refers us to the health care industry.  Even parents with the greatest initiative find themselves running around in circles.

I want to advocate for my boys.  I want to advocate for myself.  It often feels overwhelming trying to be (in no particular order) Super-Mom, Attentive Wife, Devoted Daughter, Business Owner, Provider, Autism / Asperger's Advocate, Devoted Daughter, Family Connector... oh yes and Aspie too...

The topic of Organizational Skills that was discussed at our Parent Check & Connect Meeting is one I definitely could use some help with.  I'll be blogging about that soon!

Best wishes for a great weekend!
Karen

Wednesday, February 17, 2010

Justin, Ryan & Karen are Autism Heroes with Racing for Autism

Last week I saw a posting in one of the Autism related groups at Facebook from Racing for Autism. Racing for Autism helps raise money for Autism Awareness and is the brainchild of Ray and Julie Halleran.




Here is what the post said:

Let's make 2010 a great year for Autism Awareness! Honor your loved one by having their name proudly displayed on our racecars. We want to make the greatest statement possible with as many names as we can get. Please visit our website for more info at http://www.racing4autism.ca/

Our two sons Justin and Ryan were both diagnosed in mid 2008 on the autism spectrum with Asperger's Syndrome and Autism / Autism Spectrum Disorder respectively.  I thought this would be a very cool way to show our support for Autism Awareness and to remind my children that in the eyes of their parents, grandparents and family, they are indeed Autism Heroes.

I wrote to the Racing for Autism group and received a quick and friendly response from Julie Halleran who is a co-founder of Racing for Autism and one of the drivers as well.  She and her husband, Ray Halleran have a beautiful daughter named Alexis Halleran who is autistic and non-verbal. She provides the inspiration for Racing For Autism.

Our 3 1/2 year old son Ryan is a HUGE fan of cars, Cars and CARS! It is a very special interest of his. Our 10 year old son Justin is a HUGE fan of Mario Kart Wii which is a racing game. The whole family has spent many of our Family Friday nights racing against each other and we've watched with amazement at how much this game has shown both Justin and Ryan's ability to focus and improve their hand / eye coordination. 


Julie responded very quickly to my email!  She let me know that they were pleased to include both Justin and Ryan and she even offered to include my name too since I am also an adult on the autism spectrum with Asperger's Syndrome and they are looking to raise awareness for both children and adults.  The boys thought it was really cool for Mom to be included so of course, I said yes.

Julie asked for a picture of us to include on the Autism Heroes page of their website.  Here is a photo of me and the boys:


Here is a link to pictures of Alexis Halleran and other Autism Heroes on the Racing for Autism website.
There is a very nice slideshow which shows the names, ages, pictures and geographic locations of other Autism Heroes throughout the world. 

Ray and Julie Halleran firmly believe that Racing for Autism is and should be about the people and families affected by this disorder. To that end, names of people diagnosed with Autism Spectrum Disorders are proudly displayed on the race car, each printed on an individual puzzle piece ─ the universal symbol for autism.

Last year Racing for Autism also collected donations in the weeks prior to and during Targa Week, and later a cheque for $11,000 was presented to the Autism Society of Newfoundland and Labrador.  In 2010 they are planning to go bigger, better and beyond! 

Here are links to donate or become a sponsor. There is also additional information on their website.

Julie mentioned that as of now, they are still currently accepting names to be included on their 2010 Racecar so if you know of any children or adults on the spectrum who might like to be included, please check out their website and Facebook group for details!

Ryan and Justin are so excited to know their names are going to be on a real RACECAR and that mommy has been included too.

Here are a couple other family photos to show you how much the boys love cars and Mario Kart Wii.

This is Justin's Mario Kart Spiny Shell car that he and his dad, John Krejcha did for this year's Cub Scout Pinewood Derby. Justin is a Webelos II and John is his den leader.



Ryan LOVES his Hot Wheels and Matchbox cars.  He lines them up daily and loves to make parking lots.  We have used his special interest to help him with counting, colors and identifying car names.  We noticed about 6 months ago that Ryan has an amazing ability to identify car makes and models of all the vehicles in our neighborhood. 



Here are pictures of Justin and Ryan on their ATV!


Thanks again to Racing for Autism for allowing our boys to be included as Autism Heroes!

Sunday, February 14, 2010

A Valentine's Day Love Letter from & to My Husband

Happy Valentine's Day Aspierations blog visitors!

Today I have something very special to share.  It is a love letter from my husband, John.  He is an amazing, strong, passionate, funny and kind man and I find it incredible on a daily basis that he loves me despites all my quirks and flaws.



I was so touched to see this love letter from him today.  It brought tears to my eyes.  It gave me hope, It give me strength.  Seeing his thoughts in writing was very powerful.

The irony about this is that he was typing it online to his personal blog at the EXACT same time that I was typing one to him on my Karen's Cornucopia of Creativity blog.  We were both working in opposite ends of our office oblivious as to what the other was doing.  Amazingly, we posted our love notes just a minute apart from each other.

Now neither John or I are particularly known for public displays of affection, however this year since we both started getting into blogging and since we are both learning so much about loving and living with Asperger's Syndrome and Autism Spectrum Disorder in our family, we both had a strong feeling inside that we wanted to tell each other as well as to the world about the strength of our love.  We have gone so much in the past couple years in our family physically, emotionally, financially and spiritually but through all the ups and downs and twists and turns, our marriage has become stronger.

Valentine's Day has often been hard for me in the past.  (Understatement!) In a future blog, I'll tell about how V-Day as a kid, teenager and young adult was quite confusing.  It definitely didn't have the same meaning it does for me as an adult and a Mom.

For today though, I am proud to post a link to both my husband's love letter to me and my love letter to him.  If you read them, that's great.  If not, we totally understand!   I think we're both doing this for ourselves, for our children and for each other as a symbol of our love.

http://johnkrejcha.blogspot.com/2010/02/i-love-you-karen.html  <-- link to John's letter to me

http://karenkrejcha.blogspot.com/2010/02/happy-valentines-day-to-john-krejcha.html   <-- link to my letter to John

Happy Valentine's Day to John, to our sons, Justin and Ryan and to everyone out there!
Love,
Karen

Thursday, February 11, 2010

Aspie Quiz Online - My results as a woman with Asperger's Syndrome

In my quest to learn more about myself, my children, autism and Asperger's Syndrome, I was spending some time on Google and came across a site called Aspie Quiz.

The goal of this test is to give a reliable indication of autism spectrum traits in adults. It is not to be used as an official diagnostic tool but certainly those that score high on the Asperger's / Aspie side might do well in seeking a professional diagnosis. At the very least, there may be some other comorbidities going on. In my test there were 145 questions.

Being curious, I took the test and I wanted to share my results here.  I am also doing this because there are still those in my "inner circle" who are having a very hard time believing that I am on the autism spectrum or have Asperger's Syndrome.  I tend to "mask" well when needed and although I may appear "high-functioning" (for whatever that is worth), the reality behind closed doors includes challenges in daily living of a very complex level.

For those like myself who enjoy graphs and pictures, here is a visual representation of my results:



My Aspie Score was 158 of 200
My Neurotypical / Non-Autistic Score was 64 of 200
My Results: You are very likely an Aspie

Aspie Talent - 9.5 out of 10  (High score is related to giftedness)
Neurotypical Talent - 4.2 out of 10
Aspie Compulsion - 9.8 out of 10 (High score is related to OCD)
Neurotypical Compulsion - 2.0 out of 10
Aspie Social - 9.5 out of 10 (High score is related to ADD/ADHD, Bipolar and ODD)
Neurotypical Social - 1.1 out of 10
Aspie Communication - 4.8 out of 10
Neurotypical Communication - 2.1 of 10
Aspie Hunting - 3.9 out of 10
Neurotypical Hunting - 4.0 out of 10
Aspie Perception - 9.4 out of 10
Neurotypical Perception - 2.7 out of 10
Environment: 8.9 out of 10

I asked my husband to take the test as well.  His chart looked almost the opposite of mine. 

I would be interested to see the scores of family, friends, acquaintances and other fellow spectrum travelers. Please note that the test is for adults and not for children.

If you want to take the test, the link is here.  There is some smiley face assessment before the real test that appears to be unrelated but the actual test itself is 145 questions, so allow about 15 minutes or so to answer.

If you take the test and feel free sharing with me, just let me know!
Karen

Tuesday, February 9, 2010

Autism and Asperger's Syndrome Underdiagnosed In Women? Oh yes, I think so!

Hello Aspierations blog visitors!

I read an article earlier this evening that I wanted to share just in case you haven't seen it yet.

Autism and Asperger Syndrome underdiagnosed in women, researchers say - Times Online

I am encouraged to see that this information is out there to discuss and I am looking forward to reading what other professionals, caregivers and autistic individuals think about the topic at hand.  For what it's worth, I do believe that future studies will support this assertion.  I would hope that such studies would help improve acceptance, awareness and advocacy for women on the spectrum to get the supports that they need.

In my own case, I was not aware of my own Asperger's / Aspieness until after my youngest son was diagnosed with autism at age 2 and my oldest son was diagnosed with Asperger's Syndrome at age 8. 

That isn't to say that I didn't know something was different about me.  If you read my blog posting, Before I Knew I Was An Aspie, My Puzzle Piece Never Fit,  I was acutely aware as early as elementary school that I didn't fit in with my peers but for most of my life, there was other "reasoning" that I used as a potential explanation / justification for why I felt like I never belonged.  (i.e. I was adopted, gifted, shy, tomboy, an only child, etc...)

Many people who are on the autism spectrum also have other health issues and comorbidities.  A few that come to mind that I have read about or experienced myself or with my children are sensory processing dysfunction, depression, bi-polar disorder, PTSD, anxiety, eating disorders and obsessive-compulsive behavior.  Of course not all people who have these comorbidities are on the autism spectrum and not all people on the spectrum have these comorbidities but for many, these are not mutually exclusive.

I am sure there are many women out there, especially those in their mid 30s and above who do not know about Autism / Asperger Syndrome but are wandering around life with a diagnosis of one or more of the comorbidities above.

Perhaps they attribute that comorbidity as to what makes them feel different, not knowing the underlying issues they might be going through on a daily basis are of a much more complex and interwoven nature.  Would a diagnosis of Autism / Asperger's make a difference?  For some I think it would literally be a lifesaver.  The peace of mind in knowing ... the "A-HA" moment... knowing there are others out there walking a similar journey... being able to understand one's past and present better.... that can often spell out hope for the future.   I know it did for me.

I welcome the opportunity to participate in research of adult women and/or Moms on the autism spectrum and I encourage other ladies to as well even if it seems scary or counter-intuitive.  Autism is a spectrum condition and presents differently from male to female, from person to person.  That being said, the more data out there to pull from, the more that people know about us, the more potential to identify certain traits or characteristics that might help those with autism or Asperger's Syndrome have a better quality of life for themselves, their children, their spouses and their extended circles.

I am all for a better quality of life for my children, myself, my husband, my parents and those in this world who identify with someone on the autism spectrum.

If anyone knows of any ongoing research studies, please feel free to let me know!

Until next time,
Come As You Are...
  Let Your Light Shine....

Saturday, February 6, 2010

One Aspie Mom's Thoughts & Aspierations on Acceptance & Empowerment for those with Autism Spectrum Disorder

I am currently on an ongoing quest to understand myself better, to learn more about Asperger's Syndrome and Autism Spectrum Disorder and to use that knowledge to create a better world for myself, my two boys with ASD, my husband (who doesn't have ASD but does have dyslexia), my extended family and the circle of people that I come into contact with.  By sharing my thoughts, opinions, feelings and life experiences, I also seek to be a positive role model for others in the autism community

To give some perspective, I have two sons who are now 10 and 3 1/2.  Our family moved from San Jose, California to Washington state in the summer of 2007 when our boys were 7 1/2 and 1.  My husband John and I were seeking a better life for our children and real estate pricing in Washington was way more reasonable than the Silicon Valley where I grew up.  We eagerly looked forward to the opportunity to work from home (I co-own an online Dolls & Bears Collectibles business with my husband) and raise our children in a safe and loving environment.  We had high aspirations.  (And now we have high ASPIErations too... ergo the name of my blog!)
 
When our youngest was about 18 months old, he began losing his words and it seemed like almost overnight that he became quiet (except for grunting) and non-verbal. Other social behaviors regressed too and both John and I noticed Ryan would take to spinning in circles, sometimes fast, sometimes slow.  He would smile as he did this.  For the most part, our happy little guy would still seem cheery when I would get down on the floor with him but there was less spark than before and less eye contact.  He used to wave a lot but that stopped and when it rarely did occur, it would be backwards. There were other things we noticed as well but the first big sign something was wrong was the change in speech.

After a variety of doctor's appointments testing speech and hearing, Ryan was brought in for an extensive evaluation with a group of doctors and this team of Kaiser professionals in Portland, Oregon diagnosed Ryan with Autism in June 2008.  For me, the diagnosis was a bit of a relief because with all the research I had done online, I suspected it.  For my husband, it was a shock.  (It was shocking to me too but not in the same way.)

Of course, like many parents, we started reading everything we could get our hands on.   John called me the Queen of Google way before the search engine became popular.  If I was the Queen before, than who knows what I would have been afterwards?  (Alright, obsessed comes to mind!) I spent a LOT of time during those days reading about autism and developmental delay and jumped right into the stage of trying to do everything I could (simultaneously of course) to try and create a better life for my son.

It very soon occurred to me that our oldest son, Justin was exhibiting a lot of different traits of a higher functioning form of autism called Asperger's Syndrome.  He was 8 and all I could keep thinking at the time was how could I have missed this before now?  In retrospect, there were signs, I just didn't know how to process or read them at the time.  Justin was diagnosed at Kaiser with AS just a couple months after Ryan.  I soon learned that because of the way many AS boys meet milestones, it is actually rather common for boys to not be diagnosed with Asperger's until they are around this age, especially if they are the oldest child in a family, only child in a family and/or their parents also exhibit similar traits. 

This was a very overwhelming time for our family.  Both John and I decided to disclose the Autism Spectrum Disorder diagnosis of each boy to our parents and extended family and we found that almost everyone tried to be supportive in his / her own way.  Although there was some initial denial (it was easier to see Ryan's autism than Justin's... unless you lived with them both), some confusion, many mixed emotions and some awkwardness, it made sense because just as we were going through cycles of grief, so were the people we shared with. 

It took almost an additional year and lots of reading, reflecting, an Autism Society of America conference and a lot of prayer for me to come to terms with admitting and accepting the fact (which seems so obvious to me now) that I also have Asperger's Syndrome.  

Honestly, it explains a lot and I do think that in the near future, many more women will be diagnosed.  I talk about that in my previous blogs, Before I Knew I Was An Aspie, My Puzzle Piece Never Fit and The Outing Of A Gal with Asperger's Syndrome, What Did I Do?  I am still coming to terms with it all but I realize that I am on a life journey. Although I'd like to have all the answers now to many questions in my life which have confused me, I need to embrace the process.

I find myself encouraged, empowered, hopeful, confused, depressed and overwhelmed all at the same time.  I am hopeful that a better understanding of ASD will allow me to be a better person, parent, wife and daughter.  I am however discouraged when I see that there is a lot of dissention and anger among arguing factions within the greater autism community. 

I suppose I should not be surprised about the latter.  After all, each of us is a unique individual, autism is a spectrum disorder and people are bound to be passionate (even to a fault) about their advocacy.  I just wish that "the Autism community" (and I use that term very loosely since there appear to be many factions) would find ways to get along better and work towards the common good.

I'm not a Pollyanna thinking everything is hunky dory and coming up roses but I think a positive attitude towards acceptance of who we on the autism spectrum are, where we are in the here and now is important.  While I heartily advocate for a better life (mentally, physically, emotionally, medically, financially) for myself, my family and others with autism, I also believe it is imperative in the here and now to practice unconditional love and empowerment for ourselves and our loved ones on the spectrum.

I know what daily hardships and lifelong struggles are in living with autism (diagnosed and undiagnosed).  I know the hardships of parenting two children who have autism and often very conflicting needs.  I know and care about family and friends who very likely are also somewhere on the spectrum and do not realize it. 

However I am not naive or arrogant enough to think that because I know what I do from my perspective that I subsequently know your daily hardships, your particular situation and what is personally best for you or the person you are advocating for.  Autism is a spectrum condition and even if you know one person with autism, you only know that one person.  Autism is quite complex and boys with autism often display quite differently than girls.  Although there are generalizations that can be made about parts of the condition, there are many intricacies to it and comorbidities which truly make the disorder unique to each individual.  In our family of four, three of us have ASD. We all share some similarities.  We all have many differences.  This can be said for those not on the spectrum as well.

I do not know your particular situation because I am me and you are you.  We are each the sum of all our life's experiences.  I welcome those who visit my blog and follow my journey to comment positively or constructively.  You may agree with what I say, you may disagree.  I just hope if you disagree that you do so respectfully.

I will try hard not to overgeneralize or talk in absolutes.  I will try to choose my words carefully when talking about such passion-provoking topics as cure, acceptance, disability, neurodiversity, advocacy and cause.  I would like to keep an open mind and an open door for discourse.

I am a person with autism, however it is not a label which defines my life.  That being said, it is a part of who I am and who my children are and I am motivated and inspired to do everything in my power to advocate for a better quality of life for myself and my children.

My mission with this Aspierations blog and my future complementary website is to promote acceptance and empowerment to those on the autism spectrum and those who support them.  It doesn't matter to me whether you are on or off the spectrum.  It doesn't matter to me if you're male or female, tall or short, young or more mature, green, red or purple (although I admit, purple is my favorite color); I wish for you to find a way in your life to let your light shine and for you to be accepted for who you are, where you are.

Is this idealistic? Perhaps.

I'd like for it to be realistic.

We are all flawed, however in my opinion, we all have the potential to offer something positive to this world.  I do believe in God and although I usually keep details of that personal relationship between me and Him, I do believe that there is a reason that I am here and although in my deepest, darkest days, I may have fears and doubts about many things, I have faith that the challenges and triumphs, trials and tribulations, failures and successes that I go through in my daily journey mean something.

Thank you so much for taking the time to read this.  I welcome your comments if you're so inclined and I encourage you to come back to my blog again and share in my journey.

Karen

Come As You Are ~
  Let Your Light Shine!

Thursday, February 4, 2010

HOORAY for Bouncing! Hooray for the Big Boy Bed!

Our youngest son Ryan was diagnosed with Autism shortly after he turned two.  I will share the story of his diagnosis and the Asperger's Syndrome diagnosis of his older brother Justin in a different post.   Today, let's go just a little lighter!  (If you've read my previous blog posting, Before I Knew I Was An Aspie, My Puzzle Piece Never Fit, you'll know I shared a lot of personal heavy, deep and real stuff and I'd like to set a lighter, more cheery tone for tonight's posting.)

Ryan is a VERY active little guy!  He loves to be in motion and uses spinning, jumping and running in circles to help regulate himself.  Unfortunately, he also seems to know no fear so it often feels like we're in constant motion trying to make sure he stays safe!

When the end of the day looks like this one, it has been an amazing day, indeed!


So active, so fearless....  and yet so cherubic as well!

As with many parents of kids on the autism spectrum, our boys often have a very hard time falling asleep.  Our oldest son who is 10 has some real challenges with this.  We are trying melatonin supplements and it does seem to help sometimes.   (For now, we'll take SOMETIMES as it is certainly an improvement!)

Staying asleep is a bigger issue for our youngest son.  It is really rare that he goes through a night without waking up at least a few times and he's currently 3 1/2. 

However.... last night... for the first night in I don't know how many months, Ryan slept through the night.  I would like to attribute it to our amazing parenting skills but chances are that our little energizer bunny got tuckered out through energy exerted bouncing on his brand new BIG BOY BED.

HOORAY FOR BOUNCING!!!


Yes, the BIG BOY BED complete with CARS sheets, CARS pillowcases and an amazingly comfy Snowman comforter is now THE place to be in the house for all those who are 3 1/2!

Ryan had been falling asleep in our office recliner chair for about a year before being placed in his previous bed (a crib / daybed) that he had almost outgrown. (Yes, we tried many many things to get him to fall asleep first in his own bed but we went with what worked and besides, the recliner in our office IS a pretty darn awesome chair!) 

John and I had an epiphany that if we got Ryan a big boy bed like his big brother's (who he happens to ADORE), maybe, just MAYBE, it would encourage him to fall asleep in his room and (dare we ask too much) maybe even sleep through the night.

Tonight is night # 2 in the Big Boy bed



Ryan has already planned a sleepover with Justin for Friday night


Now I realize that sleep issues in this household are far from being over, but when sleep is a premium and you don't get enough of it, you really, REALLY appreciate it when you are able to get a good night of uninterrupted sleep.

Here is hoping that night 2 in the Big Boy Bed will be just as blissful as the first!

Thanks for stopping by! 
Remember to let your light shine!

~ Karen