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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Ten Things Every Child with Autism Wishes You Knew (or occasionally need to be reminded about)

by Benison O'Reilly on Sunday, January 10th, 2010

I have mentioned before that I go through stages when I steer clear of books about autism. Sometimes it’s because of work commitments (I have two other writing projects at present) and sometimes it’s just because I want to read for pleasure.

Anyway I’m on holidays right now and decided, as penance for all my partying and overindulgence in December, to forgo the trashy novel and tackle an autism book that has been sitting on my bedside table for months, staring at me in an accusatory fashion, as if saying, ‘You bought me. Why don’t you read me?’

I don’t know why I kept avoiding it — it’s such a slim volume, a ‘knock it over in a couple of hours’ book.  It is, as you may well have guessed, Ten Things Every Child with Autism Wishes You Knew (Future Horizons, 2005), by American author and ASD mum Ellen Notbohm.

Well, I’ve read it now and can give it the big thumbs up.

My only qualification is this:  it’s liberally sprinkled with anecdotes of success relating to Ms Notbohm’s own son, who I have to say comes across at very high functioning, and I imagine this might grate for some parents of children with more profound disabilities. (It even grated a bit with me – it’s impossible not to compare). I’m sure many of her son’s achievements came about as a consequence of Ms Notbohm’s wonderful committed parenting, but I’ve known equally committed parents who have not been fortunate enough to witness these outcomes.  I think the book would be stronger if she used anecdotes showcasing a greater range of children to illustrate her points.

However, it’s a minor quibble.  It’s a warm hearted book from a warm hearted ASD mum, who preaches acceptance and understanding. In my opinion the most important of her ten ‘things’ are these:

• *I am first and foremost a child. I have autism. I am not primarily ‘autistic’.
• *Please remember to distinguish between won’t ( I choose not to) and can’t ( I am not able to).
• *Please focus and build on what I can do rather than what I can’t do.
• *If you are a family member please love me unconditionally.

I wish more parents and educators would embrace Ellen Notbohm’s philosophies, focusing more on what children with ASD ‘can-do’ instead of ‘can’t-do’.  The latter approach is probably setting many young people up for self-esteem problems.

Not that I’m claiming perfection on this point; on the contrary the book was a timely wake-up call for me after I lost my cool with Joe for being too scared to go on most of the rides at the (very expensive) fun park we attended the other day. When he insisted on playing 18 holes of minigolf in the baking sun before we left I should have celebrated his interest in and perseverance at the game, rather than grumble on about being hot and tired.

So, if like me you’re bit of a jaded ASD parent, I’d recommend you get hold of a copy of Ten Things Every Child with Autism Wishes You Knew to remind yourself what it’s all about. I’m planning to stick a couple of inspirational quotes on my fridge when I get home.

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