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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Two Useful Teachers’/Professionals’ Resources

by Seana Smith on Thursday, June 17th, 2010

I’ve heard of some terrific learning resources recently and want to share here two which are particularly useful for teachers and speech pathologists.  They’re also of interest to families too, so do read on.

1.   The first is the Jill Sherlock Memorial Learning Assistance Library.  This is a library which provides resources and equipment to schools and families all over NSW for their children with learning difficulties.   The library is run jointly by the NSW Department of Education and Training and the Jill Sherlock Memorial Trust.

On its website it describes itself thus: “This state facility provides resources to teachers, allied professionals, parents and others who support the teaching and learning needs of students with learning difficulties in the context of syllabus and curriculum requirements.”

For teachers and for parents this is a very handy resource, you can browse the catalogue online and can also get in touch to ask advice of a specialist librarian.

http://www.sherlocklibrary.det.nsw.edu.au/

With apologies, I have to admit this library is for those in NSW only, but I thought it’s worth telling everyone about – maybe there are similar libraries in other states.  And if now, why not?  Time to pester the your Dept of Ed into setting one up!

2.  Social Times The second item comes from the USA, from the Autism Aspgerger Publishing Company. This is a magazine called “Social Times” which is produced nine times each school year and which deals with the sorts of social issues our children need to practise.

The magazine is aimed at teachers and others who are running social skills groups.  You need to buy it in batches of 10 copies.

The writing is gaimed directly at young people, the magazines are bright and colourful, they wouldn’t look out of place at all to young people.  Topics include:  Giving and Receiving Compliments, What Does Embarassment Mean?, Body Language- a Must Read, Fixing Social Bloopers and Giving the Right Gift.

These magazines seem a marvellous resource, do have a look at the website which has heaps of information and a free downloadable copy.

http://www.asperger.net/social_times/index.htm

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