be careful what you believe

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There is so much out there on the internet; you need to be very careful what you take on board. (Image courtesy of zdiviv at FreeDigitalImages.net)

A short while ago a well-meaning friend shared a post with me on Facebook about, among other things, how to cure autism (and ADHD, dyslexia and dyspraxia). Her comment to me was that the article made interesting reading; and that it did.

 

I am not a huge fan of Dr Google, or Dr Facebook either for that matter. The problem is, anybody can post any old crap with the guarantee it will reach a wide and often very vulnerable audience; people who are searching for answers because all they want to do is help their loved ones.

This is not a bad thing.

I will admit right now, I did not read to the end of this article because the first few paragraphs made me see red for the amount of misinformation and blatant preying on emotion they contained.

The article started by citing all of the doctor’s credentials, plus her background and personal experience with her own child who had autism. (Notice the use of past tense here; the first step in drawing on vulnerability and desperation.)

The article went on to say:

When we start the GAPS treatment at the age of 2, 3, 4, up to 5, you give your child a real chance to completely recover from autism …

Completely recover from autism!! Right!

She then goes on to claim the following:

(Dr … is) convinced that autistic children are in fact born with perfectly normal brains and perfectly normal sensory organs.

Apparently, autism is caused because children do not develop normal gut flora from birth. This results in the child’s digestive system becoming a ‘major source of toxicity’. These toxins then flow into the blood system and head straight for the brain. And herein lies the kicker:

In children who were not breastfed, I see the symptoms of autism developing in the first year of life.

And so starts the blame game. This is particularly jarring because I have had numerous suggestions made to me over the years, by ignorant people (including some in the medical profession) that it must have been something I ate, drank or did (or didn’t do) during my pregnancy which caused Geordie’s autism. And no — although we tried, he wasn’t breastfed. I am so glad I did not read this article at that time.

Alternatively, I have also been accused of poor and/or indulgent parenting which creates his behaviours.

Sorry … but, anybody who thinks like this … just fuck off! 

Later on in the article, she proceeds to rail against bottle feeding, and against vaccinations. Danger!!! There are so many red-light moments in this piece of writing; sadly there are so many articles like this, and worse, out there and surfing the internet is a great way of finding them. Don’t!

If you want informed, practical, well-researched information on autism and asperger’s there are, in my opinion, two people who should be your go to people: Sue Larkey and Tony Attwood.

I have just watched a 30-minute webinar produced by Tony Attwood in which he talks rationally, and in language we can all understand, about asperger’s; he talks about diagnostics and gives great examples to help us know what it is like to have asperger’s. I have been living this syndrome for 11 years now, have been to multiple courses and have done a lot of (informed) reading — but I still had numerous a-ha moments when listening to Tony speak.

Google the two of them; it will be the best googling you have done for a long while.

I also need to add here that I do not, in any way, hold anything against my friend who shared this article with me. She was doing her own searching to find information about ADHD, came across this article and shared it with me because it was ‘interesting reading’.

And that it was.

** As I have quoted from the article, I am obliged to reference it. Please note, this is not a recommendation to read it, but if you do can I implore you to have your logical hat on, not your emotional one. Please also note, that what I have written here is my personal opinion based on my own experiences and the feelings aroused from reading the article. Some of what is said in the article may actually apply to your own child, just not to mine.

Gaps Nutritional Program: How a Physician Cured Her Son’s Autism  Dr Joseph Mercola ((1997-2017) Mercola: Take Control of Your Health

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How Jamie Oliver helped beat a food obsession

When Geordie was in Kindergarten he contracted a particularly nasty bout of gastro towards the end of the year. It lasted for nearly a week. He was vomiting constantly and couldn’t keep anything down.

This would be a horrible experience for anyone, but for Geordie it was the beginning of the worst, and most dangerous, obsession he has ever developed:

an intense fear of eating (lest he become sick again)

Once he became well enough to be able to eat again — he couldn’t.

Geordie would cry and cry when we tried to get him to eat. When we did manage to get food into him, it was the tiniest amount. Often, he would be crying so much he couldn’t swallow the food anyway.

He was petrified; it quickly got to the point where when he knew dinner was ready, he would start to shake. He thought if he ate anything it would bring back the gastro. The only thing he was comfortable eating was apples. (I have no idea why apples were considered safe, but other fruit wasn’t.)

Gradually, I managed to get him to eat some other foods, but still only tiny amounts. He needed to see that I had prepared the foods and that I’d washed my hands and the benches were clean. Eating out in a restaurant became impossible. School canteen lunch orders were a no-no. Party food — don’t even think about it.

Geordie’s ribs started to poke out — front and back. His clothes hung off him. He was really solid as a baby and toddler (think chunky thighs and chubby cheeks), but now we could see bones.

To add to the food issue, he also became concerned about the personal hygiene of others. I remember a couple of occasions when he lost it because he saw someone (a total stranger) neglect to wash their hands after using the toilet. He wouldn’t use the computer keyboards at school in case the child before him hadn’t washed his/her hands.

Around about this time, we started watching (and recording) Jamie Oliver’s 30 minute meals TV programme. Geordie loved this programme, watching two episodes in particular over and over and over again. We bought the book, but Geordie wasn’t keen to cook anything out of it.

After a couple of months of food battles and watching Geordie’s weight continue to drop, we managed to get a referral to a paediatrician.

Sadly, it took a while to get through to her that Geordie couldn’t (not wouldn’t) eat. I had to keep a food diary detailing what he ate. Then, after looking at a week’s entries in the diary, she gave me a referral to see a nutritionist — so I could learn how to feed my son properly.

That’s when I lost it.

I ranted at her for around 20 minutes. I didn’t hold anything back. I told her that if she couldn’t get her head around autism and the mindset it carries, then I would need to find a paediatrician who did. How dare she!

She got the point.

She put Geordie on anti-anxiety medication and gave us a referral to a psychologist.

There is a certain stigma attached to having your 6-year-old on antidepressants and seeing a psych. Mother guilt is awful. I needn’t have worried. Geordie’s school, and our friends and family, were fantastic. They all just wanted to see him get well again.

We made an appointment with Sally (the psychologist). This was our turning point. Geordie clicked with her immediately — she was amazing!

At one point I mentioned the Jamie Oliver show to her and she grabbed that. I don’t know what she did, or how she did it, but after two sessions with her, Geordie asked if we could cook the Spinach and Feta Filo Pie from the book. Then we did the Curry Rogan Josh. I didn’t actually need to open the cook book because Geordie had watched these two episodes so often he knew the recipes by heart.

He ate both of these meals with gusto.

Then we started poring through the rest of the book, selecting meals to cook together. We bought more of Jamie’s books (we now own all of them). Geordie started putting on weight. Later that year, he was the only student in his Kitchen Garden class at school to know what turmeric was.

I know there were many factors at play in Geordie’s gradual recovery, but I give credit to Jamie Oliver for a huge part of it.

I’ve become a bit of a fan actually. In his Naked Chef days, I thought Jamie was a bit of a tool. Now though … well, don’t pass any negative comments about him around me … just saying.

From start to recovery, this obsession lasted nearly 9 months. Looking back at his Year 1 photo, it is shocking to see just how skinny and unwell Geordie looked. It is heartbreaking.

Some parts of the obsession are still there: Geordie will not order food from the canteen; he is reluctant to eat party food unless he knows who has prepared it; and in Year 4 he developed emetophobia (the fear of vomiting or of someone else vomiting). But,  while he is still quite skinny, he eats normally and we can now go and eat out at any restaurant (hooray).

Obsessions are not something we, as parents, can control. We cannot stop them from happening. The only thing we can do is be aware of them, and alert to when we need to seek outside assistance.

Thank you Sally. And thank you Jamie Oliver. Together I believe you may just have saved Geordie’s life.

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The book that was the turning point in Geordie’s recovery from his food obsession. Jamie’s 30 Minute Meals.

noticing things

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Image courtesy of Stuart Miles at FreeDigitalPhotos.net

A couple of days ago a quote popped up on the Autism Speaks Facebook page.

Children with autism are very observant so they will notice everything, including your attitude toward them.

— Trevor Pacelli

This is so true for Geordie.

Over the years we have learnt, sometimes the hard way, that although Geordie appears not to be listening, he is. In fact, the times he appears the busiest, or the most absorbed in what he is doing, are the times he hears and sees the most.

Hand in hand with this is Geordie’s keen sense of character. He either likes a person immediately, or he doesn’t. There is no in-between, getting to know you behaviour. You are either IN or OUT.

A lot of this, I believe, has to do with a person’s initial interaction with Geordie. People who are ‘in his face’, forcing eye contact, speaking in high-pitched or babying voices or who question him incessantly — without fail, they are OUT. If, on the other hand, people are chilled, don’t pressure Geordie to respond, don’t talk about him like he isn’t there and stay out of his personal space — with very few exceptions, these people are IN.

This is something that is very hard to impart. There are two things I desperately want people (particularly his teachers) to understand about Geordie:

  1. It is not about YOU. Geordie’s behaviours are NOT a reflection of whether or not he ‘likes’ you, but your reactions to his behaviours will influence this.
  2. If you really want to engage with Geordie, you need to wait until he invites you in to his world, his space. If you pressure him to conform, you will never get in.

Even as a baby, Geordie seemed to have this innate sense of personality. There were some people he would happily go to. Then there were others who he wouldn’t have a bar of. In one particularly extreme case, a friend of mine could not even walk into the room without Geordie screaming. If she looked at him, or tried to pick him up he would be inconsolable for ages. These days, he has better control of his emotions, but little else has changed.

I am very open with people about Geordie’s diagnosis. For me, it is important that people don’t label Geordie as naughty, spoilt or anti-social. As far as I’m concerned Asperger’s is not a label — it’s an effective way to explain Geordie’s behaviour without going into reams of detail. However, the range of understanding about Asperger’s and Autism is as broad as the spectrum itself. And it is this understanding, or lack of, that Geordie picks up on best.

She doesn’t get me.

These four words have been used by Geordie about people who: think his diagnosis is an excuse; get upset because Geordie won’t talk to them; and who constantly pressure Geordie to join in because it’s fun.

Not everybody will get Geordie. He knows this. Very few people get on with everybody they meet.

Most students (and adults) with Asperger’s who I have met are the same; it takes time to get to know them, to build trust and to be allowed to experience their world.

This rule applies to everyone though, Asperger’s or not.

Stand back, give the person some room.

Try to understand who they are.

Give them time to see who you are.

 Be open-minded if and when you are allowed to enter their world.

 

 

Sobering moments

I have written previously about the fixations or obsessions that many people who are on the spectrum can develop. In Geordie’s case, he has had several over the years — many of which have stemmed from fears. The three worst ones are as follows:

Loud sounds:

For a short period when Geordie was barely two, we would fight a constant battle to get him outside.

Why?   The noise made by a helicopter flying overhead was so loud to his ears it was painful. This one experience developed into a roughly 6-month fear of going outside, lest it happen again.

How did we figure it out?    Another helicopter eventually flew overhead, Geordie lost it.

Why did it stop?   I have no idea. One day he didn’t want to go outside, the next day he was fine.

House is going to burn down:

Again, for a relatively short period of time, Geordie was obsessed with checking our in-floor vents before the heating was turned on. If we didn’t check them all, there was a meltdown.

How did we figure it out?   Geordie eventually told us why he was so worried.

Why?   At some point, Geordie must have heard a discussion (from us or at school, I don’t know) about house fires and the importance of keeping air vents clear.

Why did it stop?   We tried going along with it at first, but then had to go ‘cold turkey’. I held him (restrained him actually) while his father turned the heating on. We sat there for a couple of hours and proved there wasn’t going to be a fire.

If I eat something I am going to get sick:

Towards the end of his Kindergarten year, Geordie landed himself a ferocious dose of food poisoning. He had a week of vomiting. After this came the fear that eating something, anything, was going to make him sick again. He barely ate anything for months and got scarily skinny. Life-threateningly skinny. It is all well and good to say, ‘Why didn’t you just make him eat?’ My response now is, ‘I challenge you to try to make a child with Asperger’s do something they are fearful of. Good luck! If you succeed, I want the formula.’

How did we figure it out?   That’s a no-brainer.

Why?   I have no idea. My only guess is that the gastro made him feel so bad, he was petrified of it happening again and had associated the illness with food and eating.

Why did it stop?   We took him to a paediatrician (who, for the record, made me feel like an incompetent mother who didn’t know about nutrition). She put him on anti-anxiety meds and referred him to a psychologist (who, for the record, made me feel so much better about myself). After a year of anti-depressants and six months of psychologist visits, we finally took Geordie to a restaurant for the first time since he became sick … and he ate.

I have to add here, this was an extremely long road to recovery, and some elements persisted far beyond the success of the restaurant visit; it took Geordie another year to agree to use the school computers (because someone who hadn’t washed their hands might have touched them) and he still will not order food from the school canteen because he doesn’t know who has prepared it.

And right now?

This is where the ‘sobering moment’ comes in. Geordie’s current obsession is that I am going to leave him, or die.

He is older now, and is able to better control his fears and obsessions, but occasionally they overwhelm him.

Late last year we were attending an awards ceremony and, out of the blue, Geordie started to cry. It was uncontrollable, heart-rending crying. He would control it for ten minutes, then start again.

How did we figure it out?   It took several hours of crying, talking, questioning and guessing, and skin-to-skin contact for Geordie to finally tell me, ‘I kept thinking about what would happen if you died.’ Then I cried.

Why?   Again, I am only guessing, but this came shortly after my grandfather’s brother died unexpectedly. We had been talking about how surprised we were (despite his age, he was in fine physical and mental form) while Geordie was in the backseat of the car. We’ve also had a string of deaths in the family (and of friends’ parents) in the last couple of years.

Why did it stop?   It hasn’t yet. I think we’ve only just begun, the crying in a public place was just the beginning. Right now, he needs to know where I am going, what I’ll be doing and when I’ll be back. He needs to sleep with me … every night. If I get out of bed at any point, he is instantly awake. Going to school is not an issue (touch wood) because, as I said before, he is older now and better able to control his fears. I now know for a fact that he doesn’t like me going dragon-boating because he is worried we will capsize and drown.

Where to now?   I honestly don’t know. Every fixation and obsession is a new, and often steep, learning-curve. We have to ride it out and watch for signs (that are not defined) that the obsession is becoming debilitating. A return visit to his psychologist may be on the cards in the not so distant future.

How is any of this different from the experiences of a child who doesn’t have Asperger’s?

Agreed! A lot of ‘normal’ children experience the same fears. The biggest difference is that, for Geordie, his fears often become obsessions and often become debilitating. There is rarely any reasoning or rationalisation that can be done. The obsessions can go on for months, or even years. Sometimes they are compounded with new fears. And, when we think we’ve overcome the hurdle of the latest one … BANG!! … a new one hits us in the gob.

Why do I write about this?

First and foremost, I write about our journey because it is cathartic for me. Writing helps me sort through the jumble of ideas in my head. Sometimes I reread what I have written and say, ‘What an overreaction!’ Sometimes I see a clue that I have previously missed. Either way, writing things down is useful.

The other reason is that someone else might find my experiences and thoughts helpful. Or they might share what I have written with someone else who is experiencing something similar. Or they might know a child who is going through the same thing and themselves become more tolerant of the child and his/her parents.

Despite everything that Geordie goes through, despite the low and frustrating moments, despite the ever-present stress … I would not have it any differently. Geordie is my shining light.