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!

4 comments:

  1. Excellent, inspiring, look forward to coming back! Thanks for such a well thought out and well written article.

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  2. :)
    I
    Stumbled onto your blog via another. Aspergian mom myself having Asperger's...but am also a single mom who has 4 children 24/7 with not much outside help...ok non-existant for the most part, pretty sure all 4 of my boys are on the spectrum as well. Ben the 7.5 yr old has asperger's but I aslo think the older one jake whos 10 and was dx w/adhd has asperger's too- i know he does...and the 3.5 yr old definately does...as you know they all differ...but my 5 yr old is different from the others in some ways but is more quiet than the others...anyway I'm rambling. Just wanted to say hello and look fwd to getting to know you!

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  3. Hi Artsiejavagirl!
    Thanks so much for visiting Aspierations! I'm so sorry for not saying hi sooner. I didn't do much blogging in December but now I am back.

    I look forward to getting to know you as well. It sounds like you could use some extra hands! I know how challenging it is being a mom to two kiddos on the spectrum and being a traveler myself. I can't imagine being a single mom to 4 and also having Asperger's. Blessings and strength to you! Hope this New Year will provide you with blessings, happiness and the opportunity to be able to relax and take care fo yourself as well!

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  4. Hi also, anonymous! Although I've been blogging almost a year, I have to say that I'm still learning about how to go back and find messages on previous posts. I hate to think that I made anyone feel bad by not responding. I do appreciate your visit and hope you will stop by again in the future!

    Happy New Year!

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