Getting real...

This week, we returned to the geneticist, and received some 'good' news.

The news? Nothing to see here. Nothing genetic of note going on in Billy.

 On one very important level, this is great. Nothing better than a clear result.

On another level, it's yet another annoying autism story. And here's why. The geneticist made the decision, without giving us any of the details, to do an array for anything vaguely autism related.

Sensible decision, given the fact that Billy is autistic? Maybe.

Autism is not the reason we went to the geneticist. We went there to investigate why Billy (who is autistic) has immune issues, chronic GI issues and now seizures. The emergence of the triumvirate, as life (and lifestyle) determinants, is the reason we needed to seek background information from genetics. The concern, from all concerned, was that an overarching genetic condition may be causing these things to emerge.

The identification (if possible, and if it is there) of an overarching condition would be handy for a few reasons.

The first is obviously that we might be able to treat/manage said condition better and prevent health crises. While Billy is clearly not bleeding from an artery constantly, he is generally no where near robust, and new challenges emerge with disquieting regularity. It would help all of us to know a little more about why and how to respond.

The second is that it would be handy to have a medical information framework that may guide decisions we make (and Billy makes in the future) about everyday life. At the moment, we are working blind - trying things suggested by doctors, trying things suggested by other parents in similar conditions, trying things suggested to improve his overall health. Some things have a positive effect (probiotics, superfoods, some supplements), others have a spectacularly negative effect (PPIs, some laxatives). It is imprecise and occasionally quite distressing.

The third is less specific. It's about the feeling that we are a part of some bizarre window in history, where a generation (and maybe those that follow) are falling like flies. It does not feel OK, that we are surrounded by autism. It feels frightening. A reason, would soothe some of that fear, in an odd kind of way.

In proudly presenting us with a clean slate, the geneticist was clear that he was only able to provide information in his neck of the medical woods. He is all about the biological hardwiring, other doctors handle the other areas of body information.

He did, however, kindly offer me some advice and reflections on autism and how it impacts on Billy. He said Billy was clearly autistic. He suggested autistic kids need help with their social skills. He noted that while Billy's behaviour was very calm, it was in no way appropriate for his age.

Uh huh. O.K... In the moment, I looked blankly at him, thanked him for his efforts and left.

It took me a couple of hours, and a few conversations to work out what had just happened.

So, I'm drafting an email to him, in an effort to help both of us avoid the potential of me returning to his building and tripping him in the hallway out of sheer frustration.

Dear Dr Genes, 

Thanks for seeing us. Apologies for the fact that we had to hide in that empty room because your long, thin, shared waiting room was so chock-a-block with babies, their strollers and their siblings that Billy had an immediate panic attack (despite wearing the industrial ear protection he got from the Formula One Grand Prix site).

 It is a relief that none of the genetic syndromes commonly related to autism are present in Billy. 

Given that we came to you relatively unconcerned about the origins of Billy's autism, the results we received from you will go a small way towards us feeling more confident about making decisions with and for him in the future.


From my layperson's point-of-view, it may have been more useful if you had, perhaps, done the array for the combination of GI, immune, seizures and not just for autism. This is what we requested, but I understand that perhaps costs are involved, or the search for a needle in a haystack is impractical for another reason.

I also suspect I am not always the clearest in my communication with the medical profession. I suspect this, mainly because of the amount of unusual decisions that are made in response to my requests to gain some insight into Billy's health. 

I'm going out on a limb here, but seeing as how you finished our last appointment with a resolute 'so, we've reached the end of our search', I'm guessing there will be no love lost in the receipt of the words below.

Your job is genetics. I have no doubt, you are deeply skilled and that you know the field of genetics as well as it can be known. 

While I'm certain your intentions are absolutely honourable, I was surprised that your feedback came with advice on autism related behaviour management or social skills.


It was also surprising to hear statements that started with phrases like 'all kids with autism need...', and 'all kids on the spectrum have...' from you. This is not because I do not want advice about Billy, far from it. I came to you for that. I don't want to hear those phrases because that kind of stuff makes for shallow headlines and coffee shop conversation, not medical guidance. Especially not from a geneticist.


All kids with autism have different needs. Kind of like 'all' kids.

Billy has a speech therapist. He has an occupational therapist. He has a psychologist. He has a neurologist and a gastroenterologist. He has a nutritionist. He has teachers supervising his education. They help with the behaviour, the learning, the diet and the social skills. 

We have a solid program in place, that respects and embraces his disability, and we feel confident we are managing as well as we can, right now.


I was really hoping you could have helped with his health. But, I guess you can't. You can't see past the autism, which is (oddly) not our concern in relation to our interaction with you.


For what it is worth, you are not the only one who will receive a letter like this one. Dr Poo 1 & 2, Dr Immune, a couple of paediatricians, a few GPs and a whole legion of interns and nurses will get (or should get) one too. 

(A noticeable few members of your profession will get a mysterious box of chocolates with all the good stuff artfully arranged on the outside, to symbolise their refreshing mode of thinking.)


To all of you getting this one, though, I'd like to be clear on paper (as in person, I am not getting it clear at all). 


We'd like to know why our son is sick. If that helps us understand more about autism, great, but first, help us understand and manage the sickness. We need detailed, reliable information on that.  If and when we can get the illness under control, you can offer your opinions or your reliable research (they seem to be interchangeable) on autism generally. 

We have no doubt, given the experience we share with many others in autism world, that autism and illness are inextricably linked. We also understand that we (and you) do not know how, nor do we know enough about autism broadly, to unravel why so many autistic kids are so specifically and similarly sick.


We understand it, but we do not accept or condone it as an ongoing modus operandi. We are happy to work on this with you, however we can.

I need you to hear, that from our perspective, it doesn't seem fair for doctors to use a lack of understanding of autism, to justify not investigating why autistic children are sick. It is not OK, as a parent, to have someone say, 'Oh yeah, lots of autistic kids have seizures', as though we should not be worrying about our own kids' seizures because lots of other kids have them too. Especially when, as with the immune issues, the GI issues, the sensory issues, the hearing issues etc, they are described as atypical on every piece of diagnostic paper we have, and no long term treatment plan is offered. 

This is not about us coming to you and asking you to make the autism go away. This is about us asking you to be a doctor. 


We need you to help us with our whole sick child - including the autistic bit. You can't expect us to choose one or the other... the burden is too heavy, and the risk is too great. Big picture, we also need you, as all families living with autism need you, to give a crap about how it all fits together. For now, though... please treat him.


For what it it worth, we do not need a geneticist's ideas about education and diet. Unless of course, you are also willing to hear my views on waiting room organisation. I have a few thoughts, but figured it is not my place to share them with you.

Thanks,

Valerie


Now, the question is, can I afford to send this, if I want ongoing medical care from any of these people... ?

If I do, I'll be sure to post their replies here.

Chewing gum and imaginary friends...

It's been a while between posts, mainly because we have been ramping up to (and recovering from) an MRI for Billy. It's over, it's all good (screaming babies, long waits and a bit of spectacular vomit notwithstanding) and we've got a few more procedures to go before we have a neuro follow up to find out the results.

In the other times, we've been high and we've been low, as befits the rollercoaster life.

Very briefly, the first low involved Billy being rejected for an anxiety course. We paid people $155 to be told they could not meet his needs. I'm a bit miffed for a number of reasons, but really they're all superficial. The $$$ sting the most, though the fact that the course he was being assessed for was an autism specific adaptation of a Cool Kids CBT Program sucks too. But, whatever... we'll handle it.

The highs have involved kiddie nirvana - school holidays. Sleeping in, catching up with friends and making stuff. Billy has become very, very big on making stuff - playdough creatures, lego, puppets. He's got all of us finagled into the production line, and it all has a special theme.

TV commercials.

Seriously, we could hire this kid out to market research companies. There is no product-related rhyme or reason to his commercial loves. They range from cars to mobile phones to chewing gum to cleaning chemicals. He recognises some logos from kilometres away, and has a semiotic decoding skills I could have used in first year university.

Right now, we are deep in the Extra Chewing Gum 2012 Food Creatures campaign. Really deep.

We have drawn food creatures, made food creatures out of every perceivable medium, acted out the food creatures adventures, scripted new campaigns and shot out own commercials (with Billy directing and providing voice over. Because Billy has a photographic auditory memory and YouTube is YouTube, we have also mastered the art of re-enacting the advertisements in Finnish, Spanish and French.

I am enjoying this one slightly more than the Optus Animal ads, the Save Louie the Fly campaign or the McDonalds burger choices obsession.

We could put a lid on his TV commercial love, for sure, and there will come a time when we work gently towards that. But, for now, on holidays, it is all joy. His joy. Secretly we're not having a bad time, making stuff with plasticine and playing Director of Photography (when we are allowed).

He is happy, we are happy and even though it's not what the other eight year olds are doing, we don't really care. Given the fact that we work in TV, we're figuring he will gather some useful skills as well as have a hell of a good time. He is who he is, and we love who he is. This is our version of standing on the soccer field sidelines, yelling at the ref.

Which leads me back down to another low. Are you feeling the rollercoaster action today?

I have been a part of an internet group for most of the time I have been in autism world. They are a stunningly strong willed, diverse, vital group of smart women. They were the inspiration for and the corporate knowledge of The Autism Experience, and I would be lost without them. This week, a discussion about neurodiversity drove a long term member from the group.

My views were a large part of her decision to leave the group, and I am far from proud of that. I hate conflict with a passion, but not as much as I hate the divisions ripping autism world apart. It's feeling more and more every day like as autism parents we have two choices - you are with us or agin us. The 'us' changes, depending on your views on things like vaccines, the environment, therapy and neurodiversity.

This feels like smart political maneuvering, but poor practical behaviour.

I don't know whether my child was 'born with it'. I don't even know what 'it' is. I'm looking and looking and reading every damn thing I can, and as soon as I think 'yeah, that's it' some other study comes out and I'm in factual purgatory again. I don't know what my son will be capable of when he is an adult. I don't know from one day to the next whether he will be well or not. I have one doctor saying, 'it's the hand that God dealt him' and another saying 'let's try this trial of unconventional medicine'. I've got a kid who can spell 'discombobulated' but can't work out that 15 is less than 150.

I'm not able to sign up to one of the factions, when I've got zip-zero surety of what's going on, what's causing it, what could help it and whether I'm chasing rainbows or not. It is not helpful being told I have to drink the Kool-Aid, or risk being alienated by the Mean Girls.

In the day to day challenges of dealing with our kids, and the gripping social need for the autism community to advocate publicly, I think we have genuinely lost the line between reality and political rhetoric. As a community, we have factionalised. We have organised. We have sloganised (clearly, I do not work in advertising).

This is brilliant for the passionate folk who are at the forefront, lobbying government, sharing their knowledge, selling their books. But for the majority of parents who are dealing with their tweens unfortunate pooping issues, their kids' suicide attempts and their schools' lack of commitment to disability law, the slogans don't always match up.

I don't know much, but I do know this.

Autism does not make me less of a parent to my child.

I will not be told that my view as a parent is null and void because I am not autistic. I know him, deeply, and autism does not invalidate that knowledge. Many people with autism may bristle at the word 'disability' and its connotations of 'less than  able'. I embrace the word disability, for one reason only. It brings with it, an acknowledgement of my son's needs in broader society. It says, out loud, that he has special needs, that he is unique, that he cannot experience the world equitably without people shifting their focus and changing their behaviour.

He is not to be infantilised, not to be pitied, but does need to be respected and actively accommodated. Respect is not lip service. Acceptance is not just a word. Awareness is not just about t-shirts and coloured lights.

My son needs people to be quieter. He needs them to speak slower. He needs visual reinforcement to understand what is being said. He needs to be given space - actual physical space, and time. He needs people to listen to him carefully, and to learn to decode his behaviour effectively.

None of these things can happen without explicit discussion of what we know of him, and the conditions he lives with. No amount of 'different, not less' (as much as I love the meaning of that phrase) is going to help him if he is lost on the street. It's not going to stop a bully from tripping him up for being a freak. It's not going to help him sort the coins in his pocket into the right amount for a bottle of water at the shop.

For that, right now at eight years old, he needs us. And we will stand beside him as long as it is necessary. If I can work out a way to unnaturally lengthen my life, I will, and it's not because I am a control freak. It's because I am a mother.

I love the impact autistic people have in society. I have learned a huge amount from blogs and books and conference presentations, delivered by autistic people, in autistic voices. I wish nothing more than that my son's voice could contribute to that impact. Right now, though, he is sick and his voice is not heard. If his treatment so far at the hands of at least one educational institution is anything to go by, we are a long way from his voice being heard.

The idea that my support and love is somehow degrading my son's chances to contribute to the world, because I am not autistic, is insane to me. As an NT mother, I do not hate my autistic child even a little bit. I do hate the struggles that autism and its co-morbid health conditions (or 'unlucky strikes' as some doctors like to call them) brings to his existence. It is not all cool inventions and excellent moody photographs of trains, as much as we all wish it was. The world has changed, autism has changed. The evidence of that lies in the bewilderment with with we are viewed by the medical fraternity.

Acknowledging the difficulties of raising a child with autism may be inadvertently offensive to people who have the capacity to be offended by such things, and for any offense, I apologise wholeheartedly. But for those parents who share the journey with us, and for those legions to come behind us, those acknowledgements are (unfortunately) deeply necessary.

I'm not suggesting we advocate the driving of cars into walls, not by a long shot. I am suggesting we are rational in our explanations of what may, or may not be on the cards. Promising that early intervention will smooth every single ASD toddler into a pre-schooler full of quirky genius, is setting a growing generation of parents up for the worst kind of fall. In fact, it's likely to leave them with such a sense of failure and loss, that the hateful sentiments expressed in Autism Speaks 'I Am Autism' and 'Autism Every Day' could gain (not lose) traction.

As autism parents, we play the same role as any parents play in our children's lives. Autism influences that role, massively, but it does not negate it. In our lives, Billy is himself, our son, autistic, tall, funny, a lover of trains, animals and TV commercials.

We are supposedly on the 'easy' end of the spectrum. We know many, many families who are not. The idea we are degrading our children by advocating with and for them, is nonsense. When it becomes evident that a bridge has been built between Billy and the world (by him, by us, by shiny green pixies from the planet zorg), we will happily and proudly watch him walk away.

Until then (if or when he meets the height requirement for this rollercoaster ride), it's plasticine and YouTube and the occasional internet drama. For everyone.

You are walking on my kid...

**This post is replicated at Hopeful Parents, as is a post on the 6th of every month. Unless I am abducted by aliens or inefficiencies.**

The combination of autism, the internet and the times is becoming more interesting (in the Chinese proverb sense) all the time.

On one edge, are the service providers, advertising to a growing market that their approach is the key. Within that corner, there’s Early Intervention saying ‘do it now, or the window will close’, the biomed practitioners with deeply attractive recovery narratives, and peak bodies who offer comfort in watered down statistics and blue light campaigns.

On another, there’s the neurodiversity camp. Adults (principally) living with autism, presenting passionate, articulate arguments about the validity of life as an autistic person, often countering the ‘cure’ debate.

Over on another side, there’s the political lobby. An equally passionate, deeply confronting approach focussed on vaccine safety, environmental triggers, systemic societal issues, the exposition of shocking instances of abuse and neglect. These guys, in my mind, hold up a mirror for us (whether we want to look or not), and create a lot of very necessary controversy.

And there’s the parents, like me. All on our own journey, informed by our own experiences, what we read and what we observe around us. Some of us, more noisy than others. Most of us deeply disquieted by what we see, how we live, what we find. Some of us have a foot in one of the above camps, some have a foot in all camps, some have no affiliations at all. All of us (I'd speculate) have a deep desire to make the present and the future a little less crazy for our kids.

Some days, it is hard to know where to look.

After much personal wailing and gnashing of teeth, I might have come to some resolution here.

I'm thinking… the diversity of perspectives in autism world, is reflective of the diversity of autism. No two autistic kids are identical, so, it's unlikely reaching consensus on anything related to their lives is going to be easy.

So, I should look to Billy. 

Look at him and see what he needs, as a human being. I should not limit myself, and therefore limit him, to one perspective or another. I have not joined a cult, I have  a child with autism.

To the aforementioned four horsemen of the autism apocalypse, I say this (borrowed from Billy’s namesake WB Yeats, and his poem ‘Cloths of Heaven’).

I have spread my dreams under your feet;
Tread softly because you tread on my dreams.

Please be respectful of myself, my child and the validity of our journey. Please don't tell me how to parent. Please don't assume you are representing me or him. We have our own voices, and they may differ from yours. 

It cannot be my place, or anyone else’s (ideally) to invalidate anyone’s path. We are all correct, and no-one is correct. In autism world, unless I am missing some vital memo, there is no correct. We have no absolute cause, we have no cure, we have a bunch of hypotheses (which has to be hopeful, not a cause for division). 

Right now, I’m watching impressive people around me crash and burn with anger. I’m feeling it myself, and the pointlessness of my anger is disquieting. All this passion we are all feeling is based on what? Our fears, our hopes, our dreams; for our children, for each others children, for future children.

So, I’m taking WB’s advice to heart. I’m going to focus on treading softly. I do not want to crush my kids’ dreams, my dreams or anyone else’s dreams.

There might be a way to slow down the autism numbers in someone’s head, or a way to make school work better for ASD kids or… a hoverboard.

Who wants to crush that?

It's unattractive, but I'm going there...

I can't remember who it was, but some very clever autism blogger once said, 'When certain people say, "I don't know how you do it", in reference to parenting a child with a disability, you know what they are saying inside their head is, "Man, I'm glad that's not me."'

It's almost impossible to say the 'right' thing to me in relation to autism. I'm not sure I've ever heard anything (especially anything from folk who do not have a child with a disability) and thought, 'Wow, I agree with that.'

I am a boiling pot of 'no', in relation this disorder. Especially in April, and especially when new diagnosis rates for the USA are released, and there's been a huge increase. Again.

I'm like a hungry toddler.

No, I don't agree it's absolutely caused by this or that or the next thing.
No, I don't think it's just quirky, a little accelerated.
No, I don't think it's the price we pay for our sins (don't get me started on that one...)
No, No, No.
Stamping my feet.

Here are the yeses. Let me make these clear. They are easy.

Yes, I love my son.
Yes, I think the world should be full of diversity.
Yes, I think people who are autistic should be here, supported, celebrated, well treated.
Yes, I have met some outstanding people on this journey.
Yes, my life is enriched by it, them, the experience.
Yes, I'm making lemonade, omelettes and all sorts of circumstantial foodstuffs that are magical and wonderful.

And here comes the but. Actually a few buts. (I so want to write 'butts').

But... I'm being honest here. I'm not blaming. I'm not trying to offend anyone. I'm just giving voice to feelings I mostly don't share (probably for good reason). You can think what you want. I do not believe my feelings negate the reality or validity of anyone else's.

But... I'm saying this today because I'm disquieted by the feeling that I'm expected to celebrate something that (as a friend said today) makes my kid struggle with everyday experiences. And we are on the lucky end... the challenges that many other ASD kids live with, would fell all the dudes in the Trojan Horse, all at once.

But... I am not grateful that having autism in our lives has meant my parenting journey doesn't often resemble the one I thought I'd be taking, or the one I see others on. In fact, I am borderline angry. Give me enough wine, and life induced stress, and I am downright morose.

But... We don't seem to do much acknowledging that the silver lining isn't always visible. In autism world, we say these things quietly to each other, and I can't imagine a better time than autism awareness day to say them out loud.


Here goes.

 - I feel tricked. I look at pictures of Billy as a tiny baby, bright faced and full of wonder. I look at my face next to his, basking in the potential of the life we were about to share. Flash forward to now, and I remember logging each new worry like an entry in a Visitors Book. Only these visitors didn't sign out.

 - I feel betrayed by all the people who told me not to worry. I want to get in a time machine and go back and give them t-shirts to wear. The shirts would say, I was right. You were wrong. Don't say what you said to me to anyone else. Instead please say, I hear you. Google autism. And have a bottle of red handy.

 - I feel so tired thinking about doctors and nurses and teachers whose knowledge base is miniscule compared to mine,  and whose directions I am duty-bound to follow. I'm so tired that I could bottle my sweat, sell it and solve the world's insomnia issues forever.

 - I feel sad that a fair percentage of the joy of motherhood is accompanied by klingons of fear and judgement and frantic, compensatory thinking.

 - I feel disappointed that the trivialities of parenthood - birthday parties and sports and sleepovers and BFFs have been lifted out of easy reach. Also, I feel a bit miffed that popular cultural representations of parenting, family, childhood, education rarely reflect our experiences and so are less attractive. Those of you who know me IRL, will understand how this bites. Popular culture was my BFF.

 - I feel devastated that the option of grandchildren is pretty much gone, as is the rational thought of another child (should I choose to focus on the now, and not the impossible-to-predict future... another favourite piece of advice from others)

Most of all, I feel powerless in the face of autism in 2012.

We live in a world where people, for reasons I do not understand, tell me to minimise my concerns. On all levels. Every day. Maybe they think they are protecting my mental health (let me be clear - they are not). Maybe they are right and I am wrong (if that were true, my mental health would be even less at risk). Maybe they think it's all too hard (lord knows, I do).

It does not feel good that more and more kids every day are being diagnosed with autism.
It does not feel good to be told to be quiet and acquiesce in the face of a diagnosis.
It does not feel good to not know what to do to keep your child healthy, calm or functioning.

The lack of credible guidance doesn't make me do a happy dance, either.

I had a baby. We had a baby. One baby only. We made the same choice that the other 87 families made, and we got the 88th position bonus. That's the only difference in our parenting journey, at the business end.

It's OK, to me, that people are glad they are not in the same position we are. I am here, and so it is. I do not lament that it's me and not someone else. Nor do I think I am 'special' and so chosen for this task by some godly recruitment company.

The reality, in my mind, is that we are all in the same position. It is impossible, in my mind, to be living on the planet together and not share responsibility for the state of said planet and its inhabitants. We are all responsible, and therefore, involved.

It's just that on days like today, I do not feel like celebrating.