Sweet Study in a Strange new Wonderful The Aspergers Birthday Party

One of the most endearing memories I have my journey with my son into and through the forest of developmental delay called Aspergers was a birthday celebration couple years ago for his 13th birthday. 

To back track so that the memory makes sense to others, I'll interject that we're very fortunate because our son is in an incredible program through his school in which he and other children with Aspergers, Bipolar and other similar disorders spend time together and learn about socialization and emotional regulation.  They've been together for a while and are a tight-knit group.  They're very good friends, brutally honest to one another, and fiercely protective of their friendship.  While they can't always recognize appropriate socialization in themselves, they're getting there – and they recognize in one another what they're learning about life and A rare thing in the Aspergers or Bipolar childhood.

So for the birthday celebration, we had told my son he could invite some friends for a birthday celebration of his choice.  He chose to invite three other boys to see a movie: Lord of the Rings.  It was his 13th birthday, and my husband took the boys to the movie.  Wanting the boys to feel big and grown up, and not like "dad" was hanging over their shoulder, my husband told the boys "guys, you can sit wherever you want in the theatre.  You don't have to sit with me."

In a text book study of Aspergers black and white thinking, to my husband's utter glee and amazement those sweet little (okay, not so little) Aspies took him literally at his spoken word - and went and sat "wherever they wanted" in the theatre.  One sat at the very top, one sat at the very bottom, one over to the left and down several rows, and one stayed and sat right next to Troy.  

In hindsight why should we have been delighted and amazed at their interpretation – after all, it made perfect sense from the Asperger way of thinking).

After the movie, they all got up and walked out together and played video games for hours, laughing and having a blast; not giving where they sat during the movie as much as a second thought.  This was as normal as the sun shining, and my husband was the odd man out for not getting it.

The incredible lesson here is that while the Asperger child's way of thinking might not conform to what you might initially consider as normal, you're wrong. 

It's perfectly regular and normal.  So many of the losses I have mourned for my son have been my losses, not his.  He is a totally and completely happy and well-adjusted teenager with quite a different perspective on what it's like to be a teenager compared to what I envisioned for him when I held him in my arms as a tiny baby. 

But that's just it – those were MY envisioned fantasies.  He's A-OK and it's only me who needs to adjust my definition of normal.  :)

V IS FOR VICTORY

This is a journal entry of mine from 2/13/2003. 

A little good news sharing here…

Hubbie called me yesterday at work to tell me we got a letter from Taylor's school (yeah, first reaction is g-u-l-p!!!) but it was good news!

It is a letter of invitation to a dinner honoring Taylor (and other students) for academic achievement – for those students on the principal's honor role for two or more semesters in a row. There's regular honor role and then principal's honor role (don't cha know…)

I of course sat at work BAWLING (tears of joy of course). If you would have told me two years ago – a year and a half ago even – that Taylor would be as far along as he is and doing so very, very well.

For those who haven't been around for the past several years to know about our past – my son's past, for those with kids who aren't stable at the moment… Please, please know that there's always hope.  My son was hospitalized four times in an 8 months period of time.  He almost failed fourth grade and he DID fail fifth grade. (I'm getting sniffly again)…

I sent Taylor an email at school (care of his teacher and asked her to print it off and give it to him) all decorated (with a huge flying hippo in a tutu and hearts all around him – hahahaha – Mooooom!  How embarrassing!) with huge words of congratulations.  Last night when I got home from work I was just GUSHING over him.  He was shrugging me off saying 'awe mom! Stop it – you embarrassed me to DEATH at school today with that email!" I love it! YAY Taylor!

Taylor was 12 diagnosed with Schizophrenia, Bipolar, Asperger's Syndrome among many other things.

My sister, Dawn passed away August, 2000 at the age of 29 after struggling 4 years mightily.  Having been diagnosed with a brain tumor, going through a traumatic brain surgery that resulted in loss of all motor function, struggling to learn it back; and then later chemo & radiation treatment that ultimately damaged her internal organs causing a slow, continuous failure of her lungs and eventual death.  I wrote this the day after she passed away to try and put into words what I was feeling at the time.  It ended up being her Eulogy and really changed my life profoundly...:

I have been wrestling with trying to come to terms with Dawnie's struggles and her fate for many years now. I'm not all the way there, but I am making progress every day. In my struggles for an answer, I've come to many, many personal realizations about what makes me tick and what drives me forward.

Mainly, I'm driven by the idea that every single thing, every encounter, every occurrence in our lives happen for a reason. I feel that there is something to be gained, enlightenment, growth (be it emotional or spiritual), laughter to be had or shared, or lessons learned - with EVERY experience we have and with EVERY person we encounter in this journey called life. I do not believe in coincidence.

There are some momentously hard times in life, but I find that in every single situation, with introspection and hindsight, I can answer to myself the "why" I feel it happened or at least the "what" that the experience gave me. There is a reason for everything. Rather than lament in the pain, I choose to instead churn it around and find my "why" or my "what" it has taught me or brought to my life.

To me, Dawnie has always been an angel. Those that knew her know I'm not making her out a martyr in her death. From the day she was born she has always been the kindest, gentlest, most giving soul I've ever met. Unchanged in her most difficult times with this illness, this lady was an absolute testament to the spirit of life and living such like I've never encountered.

Anyone lucky enough to have known her is nothing less than blessed. With all the adversity and suffering she endured, and we all know it was abundant, Dawnie never lost her optimism, her grace or her sense of humor.

I did not see her wallow in the self pity she deserved a good swim in once in a while. I never saw her offer anything but her sweet smile and disposition to anyone she encountered. Last, I never once saw her loose faith - in her beliefs, in herself, or in the power of life, love, and living. It was simply not her nature to dwell on the sorrow.

To her, the cup was 100% full - forget that half empty / half full debate.  Even in the midst of her struggles – her physical and emotional pain - Dawnie would say "God can take me when he's ready, but until then, I'm here to LIVE."

To me a poignant statement which completely sums up what Dawnie gave to me, and taught me about life and the true spirit in which I believe we are meant to live it and encounter others. Surely more than I could have otherwise learned in a lifetime.

Her will, her joy, her unconditional love for others and her zest for life was all encompassing and it taught me the person I will always strive to be and the life I will always strive to live.  That is what her illness brought to my life. That is my "what". I'm still struggling with why, but I have faith that Dawnie will bring that to me as well.

Her joy and love will survive with me and with my family and with all of you. I resolve to never forget and always remember how precious each day is - and each microcosm of each day is. I see everything differently now down to each blade of grass and each beautiful sunrise.

That, my friends, is what drives me. It is no coincidence we all endure the pain that we do in sweet Dawnie's death. It is the most bittersweet and loving gift I could ever hope to receive and it has been given to me by my loving sister. My forever angel, Dawnie.

I hope you take her gift with you in life as well. Never forget, and always remember.