A few years after DDR’s spectrum diagnosis I wrote another piece about the thought process DH and I had to go through to simply allow DDR to be DDR. (If you’re new to my life, you can’t begin to understand the issues I have with controlling everyone and everything.)
Following is that piece that was for the most part very positively received. And again, much of my thinking remains the same. She was eight when I wrote this and now that she is on the brink of becoming a teenager – some of the circumstances are obviously different in her life and need to be addressed differently. But the tenor in which we approach new challenges or situations is still that DDR needs to work with her quirks rather than try to fix them.
I understand how blessed we are to have her as she is. This is our experience and I don’t expect anyone else to feel like I think they are less because their child who is also a high-functioning autistic doesn’t act like mine. I’ve said a lot that anyone diagnosed with Asperger’s has their very own Syndrome and I could not begin to understand them unless I was in their shoes. Whoever you are – You do You.
I’ve been musing on this for almost four years now. I don’t pretend that you are at all interested in my thoughts on the matter – so please feel free to stop reading at any time. I would like to get another opinion out there – one that I have seen pertaining to other children – but not to my own. Some of you know that our daughter is diagnosed with Asperger’s Syndrome. I don’t like to tell people who I don’t really know because I dislike having to deal with their particular reactions to it. Most of these reactions are very kind and consist of things like they see nothing ‘wrong’ with DDR and I should not worry about the label of her being on autism spectrum. These reactions, though very nice, really have nothing to do with how I feel about her diagnosis.
DDR has been ‘different’ since she was born. Looking back, her focus was evident from the moment she could make shapes out and her frankly sometimes annoying determination to see things through shown when she started putting her hands in her mouth. She began flapping her arms as soon as she could stand – a trait that has yet to lessen. She walks on her tip toes quite often and she dances like Elaine on Seinfeld – and she really loves to dance. Other’s eye movements bothers and distracts her, so she doesn’t like to make eye contact. She learned her ABCs before she was 18 months old. She memorized books by the time she was two. At seven years old she was tested at being able to do some 7th grade math – though she can’t tell or show you how she arrived at her answers – she just knows the answer. I’m pretty sure she could talk for 20 minutes straight without having to take a breath. I’m also pretty sure she controls the ipod and what it will play next with her mood. She is courageous – man oh man – she’s got a lot of moxie. She can be really sick with her head in the toilet with the best attitude and comfort ME about her stomach virus. She doesn’t like the bigger coasters at Disney, but insists she goes on them at least once per trip because she’s ‘going to be a teenager someday.’ She’ll stand up in front of any amount of people and sing crazy off key and LOOOOVE it and be sure that everyone else LOOOOOOVES it. She’s had an invisible light about her since the beginning – a certain something that makes people happy without much effort on her part. One of my favorite memories is when she was 20 months old being sitted at the DVC model home and I had to come out of the sales pitch to change DSI’s diapers. Every one of the Disney employees at the center was around her listening to her read a Dr. Suess book with their mouths wide open – one of the ladies asked me to spell DDR’s name to her because she wanted to write it down and note that she met her once. She was certain DDR was going to change the world for the better and in some grand fashion. You could say that I am certain of that too. I’m certain it’s going to come out of her amazing imagination that allows her to already write long chapter books and make believe with real fairies and fashion whole songs out of two words that she likes the sound of together and write jokes that are actually funny and also write comic strips that are dark and esoteric and deep.
What I am about to say here, I want everyone to realize, is MY experience. I don’t question any other parent who has a child who is also on the spectrum and what therapies or medications they choose to give their child. What I do like to think I know is that every manifestation of spectrum is wholly individualized to that child. I like to say that DDR has DDR Syndrome, not Asperger’s. Every other child I’ve met who has been diagnosed shows totally different traits than anybody else. So please know, that those people who get to work with their children in much more intensive ways because of where they are on the spectrum have my utmost respect and, though I fear sounding like those who talk to me about our diagnosis, my awe. I only know what we get to do with DDR – not what others feel and experience.
When people try to comfort me about DDR’s diagnosis I generally thank them without going into all of the reasons I would not have her any other way. That’s easy, but it is disingenuous. I would like to explain that she is what autism looks like. That they need to change their mind about what autism looks like. The outward symptoms of some spectrum children can distract those of us who are not steeped in it to the different ways each person communicates. Us people off the spectrum are somewhat arrogant when we think we can teach these children how to communicate like us or rather that it is most important they they do communicate like us. Some of them we can teach , some we can’t, some – like my daughter are really interested in it – some aren’t. What we should all be interested in is learning how THEY communicate. It’s not all the same, and it’s easier said than done, but I firmly believe it is the next step in the evolution of these children and their children, maybe even all us humans. Am I nutty and naive for believing that? I don’t care. I know how much DDR is capable of – and it’s more than I am – and I feel a great responsibility to uncover it. Not change it.
Her therapies at school and many private ones seem most interested in changing how she relates to people and who she is. Having her make eye contact. Pausing to let other people talk. Understanding that she has to write essays a certain way because once she gets to college she’ll have to do it a certain way. Managing her priorities a certain way because when she is a grown-up everyone will be expecting her to prioritize this way. I could go on. Some I agree with, many I do not – just like any parent raising any other child. Being home, I have the luxury of time – being able to research what is being done with people who are a bit like her – being able to sit with her interventionist and questioning why these things need to be done – rational talks with her therapist about what other people do and why we won’t do it – discussions with professionals about medications or other options. What bothers me most is how even these well meaning, educated professionals all refer to her ‘disorder’ and it makes me crazy. She is no more disordered than Albert Einstein, Thomas Jefferson, Steve Jobs, Helen Keller, Emily Dickenson, or Jim Henson. Stop with the ‘disorder.’ How can we expect her potential to be fulfilled when our approach comes out of wrongness? You’ll never see me use the word disorder.
What we mostly focus on now is her regular pragmatics lessons. DDR in particular is not invested in communing with people the way we try to teach it with pragmatics. Don’t get me wrong, she loves her pragmatics courses and applying her learning to the social stories she writes. But, on the other hand, she is very interested in having friends to commune at. It sounds a little selfish when looking at it from my or possibly your perspective – kind of like it’s her way or the highway. But when she is in sync with another friend, generally her brothers, an adult or one who is also on the spectrum, the scenarios and various bits of play they come up with are the most loving, joyful minutes you are ever going to witness. I can’t help but thinking that I am watching God. It’s the only way to explain it for me. That is how I imagine God – creating love and joy. And when she is allowed the time to be able to sync up with another, it is awesome.
I have to get over my fear of giving her that time. She has been met with silence and awkward stares at times. Generally she has not noticed or cared – recently she did when she was pointed to and laughed at by kids at her camp for singing a capella the Kelly Clarkson song “What Doesn’t Kill You Makes You Stronger” and adding her special moves to it on the raised platform at lunch. When she was tearfully telling me about it, I wanted to crawl into a hole and die after I punched every kid at that camp in their stupid, ignorant faces. But I didn’t. I knew to ask her if she would do it again because I knew her answer would be ‘yes.’ It was. And I got to explain to her that those people pointing and laughing did NOT sing and did NOT dance , that they never would and that they were being cowards. I got to tell her that she lives life so in the present that I often find myself there with her and that she has made me a better person because of it. That when I am not with her, I remind myself of her bravery and that it makes me brave.
And it was when I first got to tell her that her special brain which she already knew about, does in fact have a diagnosis that goes along with it. And it is a wonderful diagnosis – one that many people would be better for having. Just like some people are gifted with perfect pitch or athletic ability or great comedic timing, she is gifted. She has what you or others would deem weaknesses, but they are the foundations of her strengths. And to change them, would change her. I am blessed. I have a child that is a high functioning autistic. She is frustrating, loud, intelligent, creative and beautiful. Do not cure her – it is part of who she is – and I am privileged to watch and learn.