Mother guilt and autism

by Benison O'Reilly on Saturday, July 24th, 2010

I thought Seana was back in Australia last week, but now find out it’s actually this coming week. I must say that taking four children – including one on the spectrum – on an extended overseas holiday by herself  (her husband was working) was very brave of Seana, although she may prefer to substitute another adjective for ‘brave’!  I know she has plans for a couple of blogs, so stay tuned.

A couple of weeks ago I wrote about our parenting skills being judged by others, those who don’t know the  sheer hard work and never flagging commitment required to raise a child with an ASD.

Thus it was timely to come across this blog  Proving You’re a Good Parent from the New York Times. It was written by Liane Kupferberg Carter, the mother of an 18 year old boy with autism. In it she describes how she found herself explaining to a representative of the court why she should retain guardianship over her son.

It is probably less upbeat that most of the posts on our blog, but it’s so beautifully written that I thought it important to share. It also goes to the heart of mother guilt. Seana and I are currently collaborating on a book  about perinatal anxiety and depression and its surprising how often mother guilt raises its ugly head. We women seem to judge ourselves so harshly. When you have a child who doesn’t live up to society’s expectations that guilt can become an even heavier burden.

Anyway, it’s impossible not to be moved by Ms Carter’s story. Please read.

On a brighter note,  we’ve had the good news that we will soon have a bright, shiny, new, standalone blog for the Australian Autism Handbook,  with enhanced features and a much-needed  search function. Watch this space for updates…

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The perils of being an autism parent

by Benison O'Reilly on Wednesday, July 7th, 2010

‘Unfair, unfair, unfair.’

This, apparently, was my husband’s catchcry as a child, according to his family. He was a child who railed against anything he thought unjust.

These words came to me yesterday, when I was victim of the most unfair criticism I have ever received in sixteen years of parenthood.

I was in the bank with Joe, feeling stressed and hurried. I had half an hour to  get the  banking and shopping done before I had to pick up Joe’s 16-year old brother from an appointment a couple of suburbs away. Whilst I was filling out a bank deposit slip, and simultaneously being harassed by an overzealous charity collector, Joe discovered a laminated cardboard sign that belonged to the bank. There was certainly nothing remarkable or valuable about the sign but— for reasons unknown—Joe liked the look of it and took it.  I was just about to exit the bank when I heard a middle-aged male customer call out, ‘Hey that doesn’t belong to you. Bring it back!’

Looking down, I noticed Joe had the sign and told him to put it back, which he did without protest.

And…

as we departed the bank I overhead the said customer say to the teller, ‘I’d don’t blame the kids. It’s the parents’ fault.’

Unfair, unfair, unfair!

Poor old autism parents—we can’t win. I generally prefer not to tell strangers about Joe’s diagnosis these days. It’s really none of their business. (The name ‘Joe’ is a psuedonym, by the way). He has high-functioning autism, can talk and behave himself reasonably well in most situations. However, he is impulsive, by virtue of his ADHD co-diagnosis and he has lots of obsessions that can appear odd.

However, if I don’t reveal my son’s diagnosis he gets labelled a naughty child and I get called a bad parent!

I was in too much of a hurry to confront the man about his ill-informed judgements yesterday, but when I told my 16-year old about it he said he would have happily punched him in the nose.

I wonder what the man in the bank would say if he knew that:

* when Joe was diagnosed with an ASD I gave up my career to run a 35-hour a week ABA program for him

*my husband has worked hard to earn the $150,000 + we have already spent on Joe’s therapies

* when Joe was five my husband and I flew to the US just to attend an autism conference on a new promising treatment

*five years after diagnosis, Joe still attends weekly speech therapy and fortnightly occupational therapy sessions, in addition to his swimming lessons and soccer

*my husband takes Joe camping every holidays and bike riding every weekend

*we adore our son more than words can express.

I am not asking for a medal, or even any special recognition, for this. I know autism parents who have done much more for their children, at considerable cost: sometimes with remarkable effect, other times less so.

I also know that a vast many parents would do more if they had access to the money and services their beautiful children deserve. Seana and I know how fortunate we are that we were able to afford the Rolls Royce of autism therapies—that’s why we support organisations such as Autism Awareness, which continue to lobby government for better funding and services for people with ASDs.

All autism parents love their kids and want to do the best by them, regardless of their circumstances.

Parenting is never easy. I have two typical children and often feel I don’t do enough for them, that I let them down. But parenting a child with special needs raises the bar just that much higher.

My all-time, ultimate hero parents are those who cope with the day-in-day-out slog of caring for a child (or children) with significant disabilities—whether autism or otherwise— and do it with patience and good  humour. There are no better parents than these wonderful mums and dads and they deserve our awe and respect.

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Merry Christmas from the authors of ‘The Australian Autism Handbook’

by Benison O'Reilly on Thursday, December 24th, 2009

Seana is down the coast with her family and hopefully nowhere near a computer screen, so I will pass on Christmas greetings to our readers on her behalf.

I was planning a weightier contribution today, on the latest CDC prevalence data from the US, but I’ve decided that can wait until next week.

One of the many pleasures I’ve had this Christmas is the sight of the attractively decorated Christmas tree in my living room, surrounded by brightly wrapped presents.  When Joe was younger he would constantly remove decorations from the tree, attracted by their colour and shine. He’s always had a few visual stims. As a consequence our tree always looked like it had been decorated by someone who had consumed too much of the Christmas punch!  We also couldn’t put wrapped Christmas presents under the tree, because young Joe assumed all gifts were for him and would rip the paper off them just as quickly as I could wrap them.

Now the attraction of Christmas decorations has passed (although not completely the visual stims) and he can read the cards on the presents and know they are not for him.  However, I got him to help to wrap the presents for his younger cousins, so that he would know they weren’t toys that would interest him, just in case!

Progress with a child on the autism spectrum can be measured in many ways.

Anyway, we hope that you have a wonderful Christmas with your relative with an ASD and that 2010 is a good year for you all.

Best wishes,

Benison and Seana

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Walking beside

by Benison O'Reilly on Thursday, August 27th, 2009

Last week Seana and I were at the Asia Pacific Autism Conference (APAC) 2009 at Darling Harbour, Sydney. Over 1600 delegates, both professional and parent, attended. It was a packed agenda, with visiting international speakers such as Eric Fombonne, Francesca Happé, Patricia Howlin, and the now Brisbane-based Tony Attwood, as well as professional contributors to the Australian Autism Handbook: Robyn Young, Jacqui Roberts, Deb Keen, John Wray, Natalie Silove and Katrina Williams.  Seana and I plan to report on some of the keynote presentations in future blogs.

However, following on from last week’s blog about The Horse Boy, as he’s been come to be known as, about I wanted to talk briefly about the Autism SA conference Seana and I attended in late May. I witnessed a fascinating presentation by two bright, articulate and funny women who had both been diagnosed with Asperger’s syndrome in adulthood. In each case diagnosis seemed to have brought relief and some explanation as to why life had proved so challenging and difficult up to that point.

At the end of their presentation questions were called for. I asked how, as a parent (a quite interventionist parent at that), I could best assist my son and not cause him unnecessary stress and anxiety. The advice I received was this:  just as long as I was ‘walking beside’ my child and supporting him in his endeavours, my parenting was welcome.  It was being dragged along and forced to do things they found very hard that had caused these women their greatest struggles.

I thought about my son, whom we are always exposing to new experiences.  There might be a couple of grumbles at the time but definitely no distress, and once he is over that initial reluctance (like at a recent visit to a laser skirmish centre), he seems to genuinely embrace novelty.

So I think we will keep on challenging him, just making sure we are walking beside him, not dragging him along behind.

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‘Australian Story’ and autism mums

by Benison O'Reilly on Tuesday, August 11th, 2009

Welcome to the inaugural blog for the Australian Autism Handbook. The timing is auspicious, thanks to this week’s Australian Story (ABC TV), featuring Ian, Nicole and Jack Rogerson.

www.abc.net.au/austory/

Nicole, a good mate of Seana’s, in particular, for several years, is actually a contributor to the Where Are They Now? chapter in the AAH.

One of the comments Nicole makes in our book is:

I appreciate that everyone carries their own personal expectations and what they consider to be a level of success. I am sure some days people look at Jack with me and think ‘oh that poor woman, she’s got that disabled child’. Whereas, I think I’ve got the best autistic kid in the world.

I thought this an interesting observation, because for any who knows Nicole the last thing she inspires is pity. She’s a human dynamo, a gifted public speaker, and an unflagging advocate for early intervention.  She also hosts a great party and laughs a lot.

Autism is often portrayed negatively by the mainstream press, and for some families affected by severe autism maybe that is the reality, but our family life, like the Rogerson’s, is overall pretty good.  

Recently I was taken aback when some people expressed in both word and deed that they felt sorry for me. Maybe to them I was just the poor mother of Joe, the boy with autism, but I certainly never think of myself that way.  I have many identities:  I am a wife and also the mother of two fine, young, typically-developing boys. I am daughter, a sister, an aunt.  I am pharmacist (although I don’t think I’ve dispensed a medicine since 1992). I am now a writer.  I am a tuckshop mum, and a soccer mum. I am a theatre goer, and a gym goer, and a member of a political party. Yes, autism is a passion and interest of mine but I don’t feel in any way defined by it.

So I hope I speak for many parents of children with an ASD when I say, don’t feel sorry for us, or, for that matter for our children. We don’t want pity, but I think we’d all appreciate some extra understanding and support.

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