danielleQ to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012

I stumbled upon this blog project that's happening today called "Autism Positivity Day". It came about, as the website says "A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”.  The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad.  She wished she could have answered.

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search."

As a result, "We are asking every blogger in the autism community to write a message of positivity to #IWishIDidntHaveAspergers.  So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand."

Well, hi. I am a blogger. And I am part of the autism community I suppose, though I don't know if I think of it like that. I am just me, we are just we. Let's start with an introduction.

My name is Danielle. My blog is about all sorts of things, creative things mostly, photography and scrapbooking, food sometimes, family sometimes. Of my three kids, my daughter Sienna, the eldest child at 8 1/2 years old, has Aspergers. Ash, my 6 year old son, has high-functioning autism (the main difference in diagnosis is that Ash has had receptive and expressive language issues from an early age as well as the pragmatics and other elements). My husband, who is 35, also has Aspergers, diagnosed after the kids as a result of reading about Aspergers and recognising himself in the descriptions. Our 2 year old, Cedar, has a developmental paediatrician keeping an eye on him. We are an interesting family, for sure, we have a lot of love, and we have a lot of things to be grateful for.

I don't know who you are, and I don't know why you wish you didn't have Aspergers. It's such a sad thought, and though it may seem to be so logical to you, please don't wish yourself away. While not the sum of your parts, Aspergers is a part of who you are and comes with a beautiful flip side to the challenges you are feeling. I don't personally have Aspergers, I can not claim to share your experience, but I can tell you what I know to be true.

My daughter is so adorable. She is quirky, passionate, creative and fascinating. She looks at things in such interesting ways and is intrigued by details that others don't even notice, or possibilities that never occur to the people around her. I sometimes watch her and see, behind those beautiful eyes is a brain working overtime, seeing so much, absorbing so many nuances of light and sound and colour. She is a work of art. Every day she experiences fear and anxiety, and every day she feels love, excitement and joy. There is at least a moment of everything, and I admire her every day for the way she just keeps on being her amazing self, she is just so much of herself regardless of the perspectives of others or the words of those who don't understand. I feel her pain and sorrow, I experience her warmth and I embrace her enthusiasm. She loves me so much, and I am blessed to know her deeply every single day. She is an incredible girl and she has Aspergers.

When I was a super-emotional and sporadically depressed teenager, I often thought about the depth and intensity with which I experienced things. The black is so black, emotional pain echoes with physical force. When it hurts, instinct tells us to wish the pain away. But knowing that the flip side of that deep experience of life is infinitely valuable, and a kind of balancing force to the difficult side - to see beauty in unique ways, to experience positive emotions with equal intensity, has always been worth it. I would not sacrifice that which makes me who I am, with all the beauty and pain, to be less of myself, for the sake of less intensity of being, because I wouldn't know how to be that person. I don't know how to want that. No one who loves you would want that of you either.

Sometimes it feels natural to wish it away, the core of who you are, to want it to go, and that is the pain speaking, I know. But you have the power to remember, to recall and re-focus. Remind yourself. You are amazing. You have gifts and spirit and a unique view that is irreplaceable. Aspergers gives you strengths and individuality which are awesome possessions. You possess them. Your strengths and interests, they are yours. And they are part of how fabulous you are. Even when you don't feel it to be true, reach out to those who love you and be reminded.

Ash, my middle child, is so fantastic. Along with his bewilderment at much of what goes on in the world comes infectious enthusiasm and eagerness to embrace the people he comes across, in all their variety. He shares his love of pirates with all he meets, and was saying to me just today "I don't know why I like pirates but I just love them so much" while we discussed the relative merits of treasure maps, ships and swords. He has a smile to light up the day, and experiences the ups and downs of his emotions with dramatic intensity. So many days are the "best day ever" for some small detail he has such appreciation for, even if it disappears minutes later. He embraces things that other people would barely notice, or just shrug off. Where other boys are embarrassed to display themselves so honestly, Ash is abundant in personality and quirky uniqueness, jumping out of his skin to just be himself, regardless of what anyone else might think. To worry about that just never occurs to him. The negatives of his autism are vastly outweighed by the power of what a fantastic person he is. He works so hard, and feels so much, everyday. I am blessed to receive his adoration and beautiful warmth in each day that I know him. He is amazing. And he has autism.

While a positive message, this is not a rose-coloured glasses post. Life is full-on for these kids. They spend their days trying to decode the world around them, and sometimes this doesn't work so well. Things get broken, others don't understand, they don't understand and their hearts are damaged piece by tiny piece when people say hurtful things. They take people at face value, they take words spoken very literally, and are not always rewarded for their open trust. They worry, they fear, they cry. But they always win. They remain passionately, intensely themselves and they remain incredibly loved and supported by their dad and I. We wouldn't want anybody to change who they are inside. Because they are brilliant human beings.

I don't exactly remember meeting my husband, as we were on the fringes of one another's radar growing up. I remember getting to know him on the Wednesday bus home from school, when he would also be on the bus on his day off from work. He would be returning home from Adelaide, where he would have bought at least one new drum and bass cd. He spoke passionately about his music, and shared his love of beats with me. He would comment on the Shakespeare plays I'd be reading for my English studies. We would talk a little and then a little bit more, and then we wouldn't stop talking. At other times, too, and so it grew. I always found him interesting, and loved that he was different from other people, just as I felt I was, though in different ways. Now we've been married for 13 years.

Ben is incredibly intelligent, and technology is his area of expertise and passion. Just as he counted the beats per minute of every song while making mixtapes when we were young, he pays attention to each technological detail around us. We laugh at some of his quirks, his 'Sheldon chair' and microwave rotation calculation, just as we laugh at the paint in my hair and, well, pretty much whatever. He has travelled, learned new things, adapted to new jobs and gotten to know new people again and again. In parenting, he observes and embraces and considers how best to support these amazing people we are caring for. And he loves me so much, so much that even after all these years I feel self-conscious about inspiring his devotion. But I don't doubt it.

Aspergers? Yes, it's there. It's here. It's part of our home. Regardless of autism, or because of it, I don't know. But I do know three things: I am never bored. We have love. And I am grateful.


Anonymous said...

Beautiful Danielle, absolutely beautiful, Thankyou so much for sharing.

sylvia said...

One of the most beautiful posts you have ever written. thank you so much for this. Every family has it's quirks, it's ups and downs, it's very unique setup. And your post encourages me to embrace it and live it.

Debbie Smith said...

Danielle thanks for sharing such a wonderful post about autism .....we're similar to you in our family ...... One little 3 yo boy with autism and a little 4yo girl with aspergers and YES it's good to be quirky. We work hard to negotiate and build upon their understanding of this world. And so there is much more to appreciate as they learn and grow. You'vesex pressed it perfectly in this wonderful inspiring post thanks for writing and sharing this! Hugs xox

small forest said...

Danielle, what an awe inspiring post. The resounding thing, for me, was to keep reading about the love!
Your heart seems so full and whoever it was that needed to connect will feel all of that and more when she stumbles upon here.


Ps. I remember you hinting at the microwave rotation theory. Its a good one! x

Joanne said...

No one in my immediate family has Aspergers or autism but some of my friends and their children do. This post has deepened my understanding and appreciation for them. Such a beautiful, heartfelt post.

Cass said...

Amazing post! You're a lucky girl :D

Anonymous said...

I opened your blog by chance I look occasionally. So good to see positives about Aspergers. My daughter has it. She is wonderful as well as so challenging.


lusi said...

Hi lovely,
It has been too long! I LOVED this post. Our Elijah as you know was diagnosed with autism 4 years ago. Zippi our 3 year old has also been diagnosed with autism. Brett is a self diagnosed aspie (our psychologist agrees) and little zeeki is in an early screening program with early markers present. 3 out of 5 kids in the spectrum and a hubby makes for one incredibly full on life (very similar to yours no doubt!)
I have been changed so greatly by these amazing people in my life. I believe I am a much more compassionate and empathetic person because of autism. I appreciate the small details my little ones pick up on that I would have otherwise missed. I laugh at crazy phrases repeated many times over from movies that are quoted verbatim. I see and hear and feel the world differently. I am more resilient, determined and have learnt to become their advocate when I, not unlike Moses, was convinced my speech was not adequate. And just like he, Yehovah has given me the tools, courage and strength I've needed to continue to walk on.
I think of you often DQ.
With love and much understanding,
Lusi x