The Boo Files

28th July 2009. Second Year in Saplings. Sportsday

 Glenroe Farm, 2008

 Dublin Zoo 2008?

 Brisbane 1999

 Ballarat 2010

 Singapore Zoo 2010

Hamleys Dundrum, Irish Autism Action Fundraiser 2008/9

 

Stephens Green Shopping Centre, Dublin 2009

 

 O2 Grafton Street Samsung Autism Fundraiser 2009

(From when I did promotions and Social Media for Autism Ireland)

 Hamleys Triceritops 2009

 Devils Glen, Wicklow

Mao Dundrum 

 

Army Soldier Facepaint by Hamleys Girls in Dundrum

Product Review time - Boy meets G-form X-Protect iPhone 4/4s cover from Zismo

This week I tried out an alternative to the Otterbox Defender iPhone cover which I have been in love with since I first bought one 2 years ago. After 15 different types of case, and 3 very expensive repairs of 1, Glass screen 2, inner LCD screen and 3, BOTH (Liam was acting out the scene from Phone Booth where Colin Farrell smashes the handset of the phone)

I finally had a case that could be literally thrown down the stairs (and has been)

So I was intrigued to see this the link to this video on the Zismo Facebook Page 

"The folks at G-Form have brought the fury once more with a brand new case for Apple devices with a death-defying test in the hockey arena......blah blah blah...
These slim and lightweight cases act like armor to safeguard your iPhone when you need it most by momentarily stiffening to absorb over 90% of the force from an impact, and then immediately returning to their natural flexible state
This case is being released in two forms, the first being the X Protect..."

Okay, sliding around on the ice being hit by a Hockey stick is one thing, but I don't think the makers of G-Form X-protect have ever met my son:

 Yes. Those are bite marks in the hard shell cover of the Otterbox Defender Series for iPhone 3Gs

The screen and shell remain intact. And the iPhone inside is also safe and sound, especially within the silicone cover that goes over the top:

Yes, that is a ding in the integrated hard screen protector that is now a feature of ALL Otterbox Defender covers for iPhone/iPod Touch and now iPad 2/3. (the integrated screen protector is a feature, not the Ding)

You see biting, dropping and dinging is a daily occurrence in our world. And while they were not designed to be used by highly energetic autistic children; the Otterbox Defender series stands up to a lot of what they can dish out.

The same cannot be said for the new "G-form X-Protect iPhone 4/4s cover" sample supplied by Zismo in Sandyford

While I am sure it would be a wonderful cover for your average clumsy punter, without integral screen protection and a shell case, it is more husband than child proof cover. (and as husband's phone is very often high-jacked by children, maybe not even that)

So for now I am sticking with Otterbox Defender.

Disclosure: I get all these covers for FREE! from Otterbox Ireland and Zismo. I also took part in a Case Study which resulted in Gracie and I appearing in a printed Advert for Otterbox.
I blag free covers all the time to use with the iPads and iPhones that are donated by the generous public as part of the Grace App sponsored "iPads4autism_ie" campaign run by my friend Val.

All of the covers are available to purchase in Ireland from Zismo of Sandyford, 12 Sandyford Office Park, Dublin 18. Or go to www.zismo.com 
Everywhere else try Amazon or Ebay.
Zismo also gave me a bunch of charger cables to use with the donated devices too. For FREE!

And for the benefit of my potentially litigious readers:
If you choose to buy an Otterbox Defender you do so under your own free will and judgement. If anything happens it is your own responsibility and you do not have the right to leave a mean comment blaming me. Will not cause weight gain, irritability, hair loss or underwear staining. May induce gadget love.

Using the power of ABA

My beautiful girl has beautiful hair

However, as anyone with a daughter knows, it is pretty high maintenance. Cutting it short would be pointless as she would not tolerate a hairdresser and short hair has to be cut regularly.
I would not do it myself as I think that it would be unfair, I mean just because she has autism, doesn't mean she has to look like her Mum cut her hair.
And it suits her long, as my friend Joanne often says; it gives her a certain Catherine Earnshaw quality. Although if Gracie was crying at the window I am pretty sure that Heathcliffe would have no choice but to let her in.

So Bronte heroine look aside, the hair has to be brushed regularly.Gracie does not like this. It has been a lifelong challenge which used to involve me chasing her around the house. As she got older she has got a lot cuter*, and now tries to style me out of the way by putting on hats or hair bands before she comes downstairs. However, thanks to the power of ABA; we now have her doing this:

Which is thanks to this:

A special token board created by the Educational Director at her school Saplings, along with a program for tolerating an unpleasant activity in return for a highly motivating reward.

After the lovely spring weather we had last month, Gracie developed her usual hay-fever. She gets sore eyes, a runny nose and if we leave it untreated, welts on her face like hives. Very uncomfortable. Last year we tried nasal spray but she found it so adverse I could not get near her to do it. And I don't want to be forcing her anymore; she is a young lady and deserves better. So I tried oral medication which interfered with her behavioural medication. Could not risk that again.

So this year I decided to leave it to the professionals, and they came through. After 2 days of using the spray in school, she was able to tolerate first Daddy and finally me getting her to take a sniff of the nasal spray twice a day in return for treats like crisps or chocolate.

Gracie 3

In fact, it worked so well she was getting out the nasal spray several times a day over the Easter break, in order to earn the treats.
That had to stop before she over-dosed. But I decided to use the same powers to let me do a few strokes with a hair brush, in return for a token.

It is a win/win. If she won't co-operate, she eats less junk food. And if she does..

She looks beautiful.

Thanks to Katie and the wonderful Anne-marie at Saplings Rathfarnham:  A very groomed little girl.

Take a Parachute and Jump

So it is World Autism Awareness Day and here I am without a blog post.

I am feeling very autism aware as Grace decided last night that she needed a Letterland phonics Video which has been out of production for about 15 years. So I had a small girl stomping her feet saying "I want AAY, BEE, CEE, PURPLE, VIDEO" and then putting on her hat and coat and demanding to sit in the car until 2am.
Today, when we were all a bit calmer, I helped her to make this sentence using google images:

so we were able to work out exactly what video she wants and where it is - School! 

which doesn't reopen for another 2 weeks. Ebay it is then.

Autism Awareness for me is about making everybody else in the world aware that we exist, we are here to stay and you better get used to us. It's a chance for family, friends and acquaintances to catch up and realise that their sister/brother/son/daughter needs them to be aware of autism and perhaps be a bit more supportive. It is about being accepting and accommodating to the autistic people in your life.

Is there anything you can do to make life a little bit easier for a family with autism?
*Plan the next family celebration in a venue that would allow the parents to relax a bit knowing that their autistic child is safe and comfortable.
* Find out the last time they had a night off and offer to babysit.
*Ask before buying presents if there is any important equipment they really need and are perhaps saving up for. (iTunes gift cards are always welcome in this house!)
*Make your own home a bit more welcoming, put away breakables, set aside a quiet space with a video and/or wifi access, buy the foods they like, hide the foods they cannot have and keep the front door latched so Mum and Dad can catch a break without worrying... Well?

For me, it is also a day to spread a message of being "aware" of the signs of autism and taking the next step to diagnosis.
Autism is a developmental disorder and can manifest in a huge variety of delays so it can be difficult for professionals to spot, until a key milestone is missed. Parents however usually have a niggling suspicion, somewhere in the corner of their mind that things are not quite right. They might keep trying to talk themselves out of it, like I did. For example:

"I was a late talker, I didn't say a word until I was 2, so he will be fine, he is just like me"
Well, you actually had great imitation skills and were babbling away at 18 months. Your Mum was just too busy with your older sister to notice or write down any of your wordish sounding sounds. Your child is not saying anything. Get Help)

"Isn't he lovely the way he leads me by the hand everywhere, he is such an affectionate child"
He is leading you to get things because he is not learning to imitate sounds to make requests and leading you is quicker and easier. Get Help.

He doesn't look up or answer when you call his name, but that's because we always call him Boo!

I really said this to a childcare worker who was trying to hint to us to get a referral.  It took a while to sink in but Bill finally managed to convince me to go see the GP, then the Public Health Nurse where we got a referral to a paediatrician and began our trip down the road to today.

It is scary, you don't want to go down that road, it feels like if you start the process that you are wishing a disability upon your child, that you aren't loving them enough to be able to fix them.

But its no help to put it off and ignore it. If it looks like a duck, it sounds like a duck and it walks like a duck - then you are doing no harm making an appointment to see someone who can confirm what you fear and get you on the right track towards getting help. The Developmental Delays are there to be addressed, whether you take the steps to getting the right help or not. Getting a diagnosis is the first step to overcoming those delays with the right help.

And yep there are times you will feel like you are falling, that the future will be hopelessly daunting, that you will not be able to cope. - All I can say is don't look too far ahead, and whatever you do don't look down. Just take the parachute and jump, there are thousands of us here to make it safer for you and when you need it, we won't let you down.

For more information in Ireland www.autismireland.ie
For more information and support everywhere else, post your links below!

Niamh's Legacy

In the next few days I am going to write a long article about Niamh Cadogan. At the moment it hurts too much to think about it for too long. I have been looking at her emails she sent me, which included a lot of photos and this one just made me smile. I think we were both trying to get Liam to look at the camera and say "cheese" and he just kept on saying "Camembert" in his deep teenage voice and playing with the iPad.

This was the day she came to Dublin with the Munster Lions Club for the judging of the All Ireland Lions Club Youth Ambassador. I brought her 2 props; one was my giant "iFoam" with the Grace App on it and the other was Liam, my 14 year old son who sat and played with the iPad while Niamh and I chatted to William from the Lions club and her mum Jean.

While I adore and cherish both my autistic children; if I ever get a bit of time off I have to confess that the very last thing I want to do is meet other people's autistic children.
(forgive me friends but it is the truth)
And yet over the course of a pot of tea and 4 chocolate chip cookies, Niamh demonstrated the same empathy and patience for Liam that she had obviously learned from her own autistic brother Stephen.

One by one she coaxed each of us to give up our cookies and give them to Liam, while at the same time discussing her project and the small part I played in it, for the benefit of William from the Lions.

She won of course. xx

Niamh Cadogan

22nd June 1994 - 19th March 2012

Film4 Friday June 15 2012

War of the Worlds 2005
Friday 9:30 on Film4

What is your A-number?

Guest post from my lovely friend Taz who used to blog at tazzymania about her experience with adopting twice! and how her lovely little boy Button; just happens to also have autism. Taz is the epitome of Love Stretches - her love for her kids goes twice around the world; and I believe she is planning to go again.




Taz and I agree on how us Autism Mammies tend to have a little touch of the bug ourselves. And we think it is a power for good. She kindly agreed to do the Dr Simon Baron Cohen tests online - to assess ones Empathy, Systemizing and Autism potential. Or as I like to call it, "Whether you should choose the furniture in the flat-pack store, or assemble it" I will disclose my scores at the end. Thanks so much Taz. I am so proud to know you. xx

"Before I get started on this blog, I feel you should know something about me. I love tests! Not
exams, but tests. The ones where the results don’t really matter. In my teenage years the first page
I turned to in my Jackie or Just 17 magazines was the one with the test about “Is he more than just a
friend?” or “Which hairstyle suits your personality?”. If it has an a, b, c or d answer I’m all over it!

So when the lovely Hammie suggested I do a guest blog reviewing the Simon Baron-Cohen
Empathy and Systemizing Quotient tests, I jumped at the chance. Since Button arrived
flapping and spinning into our lives, I have recognised quite a few autie and aspie traits in
myself (not to mention the rest of my family!). So I was interested to see how I would score.

The tests can be found here and consist of a series of 60 statements, to which the respondent must answer one of the following:

•

Definitely agree

•

Slightly agree

•

Slightly disagree

•

Definitely disagree

The first test is the Empathy Quotient Test, which contains questions such as:
 “I find it hard to know what to do in a social situation” and "In a conversation, I tend to focus on my own thoughts rather than on what my listener might be thinking”.

The average score for women is 47 and for men is 42. People with AS have an average score of 20. I
scored 45. Go me! Nicely average on the old empathy so!

Next came the Systemizing Quotient Test. Sample questions her would be: “In maths, I am intrigued
by the rules and patterns governing numbers” and “If I had a collection (e.g. CDs, coins, stamps), it
would be highly organized”

The average score for women is 24 and for men is 30. People with AS score an average of 40 – 50. I
scored 27. Again pretty average, but veering towards the higher end!

My last test was the Autism Quotient Test. This is the biggie!! The questions include “I tend to have
very strong interests which I get upset about if I can't pursue” and “If there is an interruption, I can
switch back to what I was doing very quickly.” The average score for women is 15 and for men is
17. People with AS would typically score around 35. I scored.....wait for it....31!!!
I knew it! No wonder I can relate to Button so well.

Doing the tests was a bit of fun, but it’s also confirmed what I have believed for the past few years. I
have definite Aspie traits (as do my brother and father in my opinion!) and whether I had biological
or adopted children, autism was destined to be a part of my life. Button is truly the baby boy I was
meant to have.
"

This is not a picture of Dr Simon Baron Cohen. 

*I scored 37 on both systemizing and empathy. So I get to choose the new futon, AND assemble it.

Letter to the Editor - With Love

Dear Sir

I would like to offer to write a detailed response to the Examiner's Feelgood article of 3rd February which was published with respect to the role of the author as a "parenting expert' and the subsequent editorial response which said that he had a right to an "opinion."

(click on the highlighted words and you will go straight to whatever link I am referring to)

As the first article clearly set out to influence through the authors noted 'expertise' and made reference to a soon to be published book; I think it is only fair to give a right of detailed reply to someone who has spent 14 years studying autism parenting first hand, who has written thousands of words on the topic of day to day life with autism and who has made it their lifes work to give people with autism the ability to communicate independently.

I am talking about myself of course. As the creator of the Grace App for autism - a means by which a person with a speech disability can communicate their needs and interests independently in a way that they control, which is universally understood, I think I have some credibility when it comes to evidence based interventions that improve the lives of people with Autism. 

As the mother of a 12 year old and a 14 year old with severe autism - that is AUTISM not "autism" in inverted commas, I live my life trying to be as close to my children emotionally, socially and practically. We do everything as a family in a way that suits their needs and interests and will cause them as little anxiety as possible. This was illustrated to any one who watched us as family in the RTE documentary series "Life With - Autism" in October last year.

My husband and I have long acknowledged our own autistic tendencies. I am a great systemizer and scored highly in the Simon Baron Cohen online test that will form part of his long ranging study. I also scored highly as an empathiser?! 

So we can't all be put into convenient boxes when it comes to defining why we had 2 severely autistic children.
As for the theory of engineers and mathematicians "causing" their children's autism; my husband and I both worked in sales for years and I ban my husband from helping with self-assembly. While I am handy with a cordless 9 volt and adept at assembling flatpack, I am a rapacious multi-tasker. So your dam or bridge or Air-bus maintenance might be delayed while I put on a wash, hoover the kitchen and then have a quick check of facebook while my noodles are in the microwave. 

All things considered, I am actually quite comfortable with the idea of people with a gift for engineering or numbers having the propensity to have children who are diagnosed with autism. But I think it is a case of confusing what came first - the chicken or the egg.

Because I think that many engineers, architects and maths professors probably have a tinsy touch of autism in their own neurology. Autism can be extremely challenging to live with and I do not minimise the anxiety experienced by the autistic themselves or the families of children who are severely affected.
However, it can make you absolutely brilliant at focusing, at systemic planning, at visualisation of a completed project from a blueprint or lines of html code.

Bill and I have two nephews with autism/aspergers, we also have some relatives with dyslexia, dyspraxia and hyperactivity.  I find it really difficult to communicate when in a room where there is music playing AND people talking as I can't separate the sounds. I can't tell when people are being two faced or bull-shitting me and I'm baffled by office politics. All that scrambling to take credit for success when it was someone else's work - it would not feel right to me.

My husband as I said is not handy with flat pack furniture. He is a liability when it comes to putting up rails or hooks but he will tell you everything you need to know about bird life and their categorisation. He also believes in the Met Eireann online weather mapping and will deny it was ever going to rain, even when I am drenched to the skin dragging the washing in from a downpour - because it wasn't on the chart.

He had an extremely limited diet as a child,  didn't taste a tomato until he was 23, but when he joined the wine industry he could pick out a corked wine from 10 feet away - which is something very few people can do. 

So we met, we put up with each other's little foibles, we got married and pooled our genes and then we had not one but two children with full on, capital A- autism.
We used to both work in Sales, but not so much now as the role of caring for our growing son and daughter takes up a lot of our time and it has been really difficult to find meaningful work that supports our need for flexible carer's hours.

So why was the publishing of the original article so potentially harmful?
Firstly there are people out there, who believe that our kids are being over diagnosed with a mythical disability and that parents like us just need to cop on and stop wasting the state's time and money. These people vote and will re-elect a government that is cutting disability allowances, special needs assistants and access to home based help and respite.

Even worse; some of those people who will read the article as "proof" of what they have always thought, might be the neighbors, aunties, uncles and grand parents of children who are not developing at a typical rate. Who have not said their first word by 24 months. Who do not make direct eye-contact, who line up their toys in rows, or collect unusual objects obsessively, or who may be engaging in sensory seeking behaviours like flapping, head shaking, twirling or even self-harm.

The last thing these children and their parents need is some gobshite saying that all the above is the result of their unloving parenting and that they do not deserve a referral, diagnosis, qualified intervention and access to support infrastructure and help. Because the judgement actually starts at home. When your child is not meeting their milestones it is always so easy to blame yourself.
"You didn't eat the right food during pregnancy, you didn't breast feed, you breast fed too long, you didn't make your own gm-free organic babyfood, you went back to work too soon, drank too much coffee.. .blah blah blah"
That self-blame cycle can really slow you down but it is even worse when you have unhelpful relatives willing to agree with you. 

Blame does not equal acceptance. Blame slows you down, it makes you susceptible to conspiracy theories, snake oil cures and expensive quackery. Repeat after me: This was NOT your fault. This was nobodies fault. You can no more hold yourself responsible for your child's autism than you can for your husband's uncle's male pattern baldness or your maternal grandmother's disproportionate big toe. 

(we have so far missed out on the baldness but Gracie got the weird big toe)

If you are thinking there is an "epidemic" of autism - then read this article published by the National Autistic Society U.K. that demonstrated the 1/100 rate has actually been around for a long time.

If you are wondering why I am so comfortable with a scientific, genetic explanation - then read this link to the Trinity College Dublin neuro-psychiatric genetics and autism study that Bill, Liam and I have been contributing video observations, data and tissue samples to for almost 10 years. (Gracie is not good with Doctors or testing so they had to do without her involvement)

Bill and I actually competed ferociously to have the highest score on a set of visual language tests.

Professor Louise Gallagher who supervises our involvement in the study thought we were hilarious (the need to win is a very Aspie characteristic)

So the casually posted "opinion" of someone purporting to have an expertise could have far reaching consequences for families already struggling to accept Autism, and to make ends meet in order to provide some kind of quality of life for their children.

I'm here to try and counter that "opinion" as a working "expert" in the field. 

My Family, with extra Autism Goodness baked in.

To hear more - you could listen to this podcast from Wednesday when I was on the Newstalk Radio. The Author of the article declined to contribute.

A posting from the Autism Ireland Facebook Page

I'm really sad to be sharing this article today as it feels like I have stepped into a time warp that has taken us back to the 1950's when Autism was blamed on so-called "refrigerator mothers" whose coldness towards their children caused them to be developmentally delayed and socially withdrawn.

I will go on record as saying that I am a refrigerator mother; that's where I keep the Prosecco baby! Which I need after reading articles by self pro-claimed parenting "experts" who conveniently have a book to sell and some private speaking engagements to promote their extremely outdated agenda.

Read it if you can - it is best to be properly informed when you need to counter a damaging and troubling argument. Then go to the Autism Ireland page for links to a discussion about the article including an email address of the newspaper that published it. It is apparently an opinion piece so the cynic in me wonders if it is a deliberate attempt to stir up controversy and get subscription clicks for the paper. Disturbingly I found out today that he lectures on "interpersonal communications" and "parent mentoring" at University College Cork. So potentially there is a student being indoctrinated with these ideas right now.

My blog friends like Sharon and Madam Poulet have covered this story very eloquently already and I encourage you to visit and read their response. If only as a sweetly reasoned sorbet to cleanse your brain palate of what follows. My thanks to Jen of Autism Ireland for transposing the print article which has yet to appear online.

"Core Connection" - an article in printed edition of Irish Examiner 3rd Feb

by Irish Autism Action on Friday, 3 February 2012 at 19:28

by Tony Humphreys

Do not read this if you have had a difficult day/week!

A team of researchers at Cambridge University is currently exploring the connection between high-achieving parents, such as engineers, scientists and computer programmers and the development of their children. Professor Simon Baron-Cohen, who is the director of the Autism Research Centre at the university, says there are indications that adults who have careers in areas of science and math are more likely to have autistic children.

In studies in 1997 and 2001 it was found that the children and grandchildren of engineers were more likely to be autistic and that mathematicians had higher rates of autism than other professions. What is shocking is that Dr Baron-Cohen and the team of researchers are one: assuming that autism is a scientific fact and, two: missing the glaringly obvious fact that if the adults they researched live predominantly in their heads and possess few or no heart qualities, their children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity.

After all, the deepest need of every child is to be unconditionally loved and the absence of it results in children shutting down emotionally themselves because to continue to spontaneously reach out for love would be far too painful.

Children's wellbeing mostly depends on emotional security - a daily diet of nurture, love, affection, patience, warmth, tenderness, kindness and calm responses to their expressed welfare and emergency feelings. To say that these children have a genetic and/or neurobiological disorder called autism or ASD (autistic spectrum disorder) only adds further to their misery and condemns them to a relationship history where their every thought and action is interpreted as arising from their autism.

It is frequently the case that it is when these children go to school that their emotional and social withdrawal of eccentricities are noticed, mainly by teachers, who themselves can struggle with how best to respond to these children. An unconscious collusion can emerge between parents and teachers to have these children psychiatrically assessed so that the spotlight is put on the children and not their adult carers' own emotional and social struggles. Regretfully, the relationship contexts of the childrens' lives are not examined and their mature development is often sacrificed on the fires of the unresolved emotional defences of those adults who are responsible for their care.

It is important to hold to the fact that these carers do not consciously block their children's wellbeing, but the unconscious hope of children is that other adults (teachers, relatives, educational psychologists, care workers) that when they are emotionally and socially troubled, it is their adult carers who often need more help than they do.

Indeed, my experience in my own psychological practice is that when parents and teachers resolve their own fears and insecurities, children begin to express what they dare not express before their guardians resolved their own emotional turmoil.

A clear distinction needs to be made between the autism described by psychiatrist Leo Kanner in 1943 and the much more recently described ASD (autistic spectrum disorder, often referred to as Asperger's syndrome). The former 'condition' was an attempt to understand severely emotionally withdrawn children, the latter concept, which is being used in an alarmingly and rapidly increasing way, is an attempt to explain children's more moderate emotional and social difficulties. Curiously - and not at all explained by those health and educational professionals who believe that autism and ASD are genetic and/or neurobiological disorders - is the gender bias of being more diagnosed in boys (a ratio of four to one). This bias is also found with ADHD. Surely that gender phenomenon indicates the probability that boys are reared differently to girls and that due to social and cultural factors boys respond to the troubling behaviours of their adult carers in ways that are radically different to girls.

What is equally distressing is that, as for ADHD, a whole industry involving research, assessment, screening, education and treatment has been developed, despite the absence of any scientific basis or test for either the originally 'detected' autism or for the broader construct of ASD.

Sami Timimi, a consultant child and adolescent psychiatrist and two colleagues rigorously examined over 5000 research articles on autism and ASD and found no scientific basis for what they now refer to as mythical disorders. They outline their findings in their book 'The Myth of Autism' (2011). The conclusion of their indepty studies is that "there is no such thing as autism and the label should be abolished".

The authors are not saying that the children are not emotionally and socially troubled. What they are saying is - and I concur with them - that focus needs to be on the relationship contexts of these children's lives, and to take each child for the individual he or she is and to examine closely the family and community narratives and discover creative possibilities for change and for more dynamic and hopeful stories to emerge for both the children and their carers.

Dr Tony Humphreys is a consultant clinical psychologist, author and national and international speaker. His book 'All About Children" is relevant to todays article. 

What else can you do? Join Twitter and use the hashtag #ilovemyautistic to refute the myths with examples from your own life
eg: "@lisamareedom: #ilovemyautistic son because he cracks me up! And laughing every day keeps me young"
you get the idea. Now go forth and counter!

xx

edited to include: a lovely summary of our #ilovemyautistic tweets on @DrSom 's blog