Adventures and Obsessions Overseas

by Seana Smith on Monday, July 26th, 2010

Many thanks to Benison for  holding the blog fort whilst I have been in Scotland.   I’ve been visiting my family and my husband’s family with the four kids, and introducing the twins, who are now four, to their Scottish family and heritage.

The twins and I will fly home tomorrow and Tom and his almost-11 year old, and very long-suffering brother, took the train to London today and fly home from there on Tuesday.

This visit to Scotland marks many milestones for us all and there have been many occasions when I’ve reflected on our ASD journey, where we’ve been, where we are now and where on earth we are all heading.

Firstly, it is amazing that Tom and Dexter have been able to fly to and from Australia without their parents – who’d have ever thought it?   They were well looked after by Qantas as “unaccompanied minors” and thoroughly enjoyed the flight over with all its movies, computer games and kids’ meals.

In London they are staying for two nights with our dear friend Jo, she was one of Tom’s ABA therapists and was his shadow at school as well.  In all she worked with Tom for five years, and, once faded out of school, she went overseas and has been in London for a few years.

I’m so grateful still to Jo for her calm and soothing personality, which helped me so much as she was helping Tom. Jo was terrific at making sure Dexter felt involved in Tom’s therapy and so he feels as warm towards her as we all do.

I must say that I really wouldn’t be happy to send Tom off on trains and planes alone, but he’ll be fine with Dexter, who is much more streetwise.   Likewise, I wouldn’t send Dexter alone, but feel he’s Ok with Tom who is a huge boy whom few would mess with.   Just hope they don’t lose the mobile phone.

Similarly, I wouldn’t really be happy to send them to stay with anyone but Jo.  She knows  Tom well and was keen to have them to stay.   Tom’s incessant talking and puppydog enthusiasm, plus his endless demands for money, junk food and musical instruments will not faze her.  We trust.

Musical instruments!  Don’t talk to me about them!  Never let it be said that Tom doesn’t have some flexibility in his obsessions.  He has discovered a whole new raft of them on this trip and all very culturally appropriate.  These include:

* the bagpipes… he talks about them incessantly and is desperate to learn.  He did get to blow a set and was delighted; me less so.  Other musical instruments obsessed over include banjo, ukelele, guitar and, bizarrely, the sitar which is not very Scottish at all.

* golf, the national game.  This is not a dreadful obsession to have, in fact it’s a handy one and I did manage to let him play a few times.  It’s just the going on and on and on about it.

* Irn Bru, Scotland other national drink, a fizzy pop par excellence.  Both my big boys loved Irn Bru, such a pity it has Sunshine Yellow colour in it and carries its own health warning about its effect on the “activity levels and concentration of young children.”

Anyway, be grateful for small mercies, Tom hasn’t yet obsessed about those other Great Scottish Drinks, whisky and Tennants Lager.  Nor has he taken up the tradional Scottish pastimes of chain smoking and eating bulk saturated fat.

His mother however may indulge in a wee dram before leaving the land of her birth tomorrow.

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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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On dancing frogs and physical clues to autism

by Benison O'Reilly on Saturday, July 17th, 2010

Some of you are probably old enough to remember the old Loony Tunes cartoons, featuring Bugs Bunny, Daffy Duck and the crowd.

There was one particular cartoon that used to drive me nuts. It was about a down-and-out homeless guy who discovers a box, and inside the box is a singing, dancing, high-kicking frog. Dollar signs appear before the tramp’s eyes (his luck has changed!) and he starts heading off to various casting agencies, frog and box in hand.  But the frog only performs its routine for him and when anyone else is around it simply sits in the box and says ‘ribbit, ribbit’ — as frogs tend to do.

Eventually the guy gives up in despair and tosses the box and frog away…only for it to be discovered by another down-and-outer, to repeat the process over, and presumably over again.

It’s almost unwatchable.

The dancing frog has become a metaphor in our house for the child who refuses to perform for the crowd. And of all our children, Joe is the most notorious dancing frog.

It happened again this week. Every six months we toddle off to the paediatrician’s for a check up — the same paediatrician who diagnosed Joe way back in February 2004. Back then Joe was so disabled—completely hyperactive and very autistic, with no play skills and virtually no language. His developmental assessment suggested a very low IQ.  The situation looked bleak.

Now, despite the autism, things are much better.  Academically Joe’s maths and spelling are age appropriate, and his reading and handwriting are just a bit below. His language improves on a daily basis, so much so that I sometimes wish he’d talk less.  He can ride a bike, swim and play soccer.  He loves play dates with his friends.

I took his impressive school report along to show the doctor, which is just as well because the chatty, interactive boy of five minutes earlier proceeded to ignore the doctor, avoid eye contact, and disappear into an autistic trance.

‘He’s not usually like this,’ I said, ‘Normally he never shuts up’.

Yeah, yeah, I’m sure the doctor was thinking.

Why do I have this desperate desire for people to see Joe at his best? To see that he is not so different from the rest of us?  Probably it’s just for my own pathetic gratification because— at this stage at least—he couldn’t care less.

I should let go. After all he is not a trained seal, nor a dancing frog.

Speaking of things medical, I stumbled across this interesting paper the other day. It’s entitled ‘Morphological features in children with autism spectrum disorders: a matched case-control study’. Basically a bunch of Dutch researchers got 224 children on the autism spectrum (mean age 9.7 years; 4:1 males/female ratio) and some matched controls (typically-developing kids of the same age) and looked for physical signs that distinguished the kids on the spectrum from their typical peers.  They classified these physical signs as major abnormalities and minor variants. The latter  are ’slight morphological deviations’ that have no serious medical or cosmetic significance but may be  useful indicators of disturbed development. Of these minor variants, minor anomalies have a prevalence in the normal population of ≤4% and common variants a prevalence of >4%.

The children with ASDs were statistically more likely to present with major abnormalities, minor anomalies and common variants, including:  dull facial expression and open mouth appearance  (these were the only two major abnormalities detected),brachycephaly, facial asymmetry, webbed toes,  hyperflexible joints,  prominent ears, attached earlobes, clinodactyly, flat feet, high palates and abnormal hair whorls (’cowlicks’).

What is most interesting is that none of the kids on the spectrum in this study had an intellectual disability (defined as IQ<70),  yet they still displayed physical signs of ‘difference’ – subtle, but present nonetheless. It adds further weight to the genetic basis of ASDs.

And the sixty million dollar question is: Does Joe have any of these signs?

Yes. He has both hyperflexible  joints (although his father, who is clearly not on the spectrum, also has these) and he has some degree of brachycephaly. The latter was actually commented on by a doctor when Joe was a baby, but I just assumed it was a consequence of encouraging him to sleep on his back, a precaution introduced to reduce the likelihood of SIDs.

Still he remains a very good looking boy, with a slightly odd shaped head. I just hope he doesn’t go prematurely bald.

The study is published in the Journal of Autism and Developmental Disorders as a free access article,  so you can read it yourself if you so desire.

http://www.springerlink.com/content/ck441558236×33w7/fulltext.pdf

By the way, in case you’ve been wondering about Seana’s recent silence on the blog front, she has been ferrying her brood of four around Scotland for a few weeks, visiting the relatives.  We look forward to her return next week.

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Importance of choline for pregnant and breast feeding women

by lisaguy on Saturday, July 17th, 2010

Hello everyone, today I want to tell you about a really important nutrient that all pregnant women should know about – Choline.

Researchers at the University of North Carolina have recently found that choline plays a critical role in fetal brain development, especially with regions associated with memory. If a mother’s diet is deficient in choline, a baby’s brain will develop too few blood vessels, putting a child at risk of memory problems and learning difficulties.

Choline is an important nutrient related to the B vitamin family. Egg yolks are one of the richest sources of choline, each yolk containing 126mg of choline. Other good sources of choline include soy beans, peanuts, spirulina, broccoli, wheat germ, potatoes, milk and beef.

Choline is essential for healthy brain function as it is found in the myelin sheath that insulates nerve fibers throughout the brain and body, which facilitates rapid transmission of electrical impulses. Choline is also used to produce acetylcholine, an important neurotransmitter involved in memory storage.

Pregnancy and lactation is a critical time for brain growth and development, and therefore the need for choline is increased. It is also important for pregnant women to have good choline levels as it helps prevent neural tube defects (together with folate). Maternal reserves of choline can easily become depleted during this time so it is recommended that pregnant and breast feeding mums regularly consume foods rich in this important nutrient.

The recommended dose of choline for pregnant women is around 450mg per day. Because choline is also necessary for milk production, the recommended daily intake for lactating women is 550 mg/day.

Wishing you all good health. Until next time, Lisa.

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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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