falling into Lourdes


I have just watched an interupted version of "After Thomas". A movie of the week made by Utv about a little boy and the impact that a dog had on his family and ultimately his autism.

Interupted because my own little girl with autism was dancing in front of the kitchen t.v. in perfect harmony with the lead character "Kyle" the 6 year old with ASD. Irony runs rich in our house as my Bratty girl put on a DVD "The Best of Ernie and Bert" and I decamped to the living room to try and watch it there. After a negotiation with Boo who was watching Sky Movies; I got back on track to see the puppy being brought into the room and placed in the Mum's arms.

It was very moving. Firstly to see how accurately they had researched "Kyle's" behaviours but also for the friction between his parents. Dad wanting to have a life. Mum totally stressed but not willing to go for the residential option that they were investigating when I tuned in. Been there man!

I think that is one of the great Taboos of the Autism world. The marriage breakdown potential. There is a tendency to think what does not break us makes us stronger. Not true. Whatever weaknesses were there in the partnership are going to be magnified by the pressure of raising a child that does not fit the expectations of what you planned together when you first talked about "trying for a baby" HA!

But that is not what this post is about.

This is about what I like to call the "Lourdes Syndrome".

For those of you not living in a Catholicentric country; Lourdes is a place in France where Our Lady; Mary the mother of Christ, appeared to a girl called Bernadette and taught her some prayers. Google it if you want to know more as they have a website.

Now it is a place of pilgrimage for the sick and disabled.
Millions of people travel there every year with their carers in order to be cured.

Whether you believe in it or not; truth is that the belief of those who go there, does result in a cure or at least a remission in symptoms for many. Call it faith or positive thinking it works; for some.

I don't have a problem with Lourdes. What I would have a problem with is someone who refused conventional treatment for their condition; say an operation to remedy a heart defect; and instead went to Lourdes. Do both is my opinion. If you are well enough.


I see the Lourdes equivalent all the time in Autism land. Parents who believe fervently in the Gluten free Diet, or Bio Meds, or one of the multinational intervention programs that just happen to cost €25,000, or Listening therapy or super multivitamin infusion therapy or swimming with Dolphins.

I am not saying that any of these treatments are particularly harmful to the well being of the child concerned. Some of them do a great deal of good. Especially when parents have invested so heavily in them that they spend extra time focusing on the child.

The harm comes when a parent decides that this is the ONLY thing that they have to do to ensure a "cure".

That's right. They make such a heavy emotional investment in the "treatment" that they ignore the most basic common sense management strategies for seriously disruptive behaviours.

I have personally been subjected to 45 minutes of talk from a Father of a boy with autism about his son's "poos"; who at the same time told me that he could see no reason to use applied behavioural principals at home to manage his son's outbursts.

Nope, sadly, as far as this Dad was concerned it was "all about the gut and The ILLNESS" of autism and simply taking away a reinforcer until the behaviour ceased was not going to be considered. That was for the school to deal with.
Yowie Kazowie. What a nutter I thought to myself.
Then I went on my journey and continued to pursue a scientific applied intervention for my beautiful kids while they continued with their state sanctioned education of 1 teacher to 6 wild kids.

(I say that with love, I know they are not wild but when you put six kids with varying presentations of autism and in a small room with 1 direct teacher and 2 assistants; Well, what do you expect?)


I have come many across others who fervently believe in one of these "cures".
My original "sponsor" in this green isle was a GFCF and "defeat autism" proponent who offered me NOTHING in the way of information about services; but a fervent belief that baking her own ham was going to cure her son.

6 years later and that boy still has autistic behaviours to beat the band.

But I sure have learned a lot about what is possible.

Again, when we first arrived in Ireland my inlaws told us about a collection in the little seaside town in which we now live. All of the locals had rallied around to raise €30,000 to enable a family to travel to Massachussets to attend a course in therapy and then come back and create a treatment room in their house.

A similar collection had been held for another child on the spectrum to attend a Dolphin therapy centre.
6 years later and this pleasant little town still doesnt have an autism specific classroom, let alone an ABA school. Imagine if the energy of the those parents and the community had been applied to getting a school?
I wouldn't be driving a 100 kilometres each day for a start.

I appreciate how engaging working with animals can be. I have experienced how fascinated they are with kids like mine. Bratty had a bonding session with Dolphin at a Waterpark in Southern Spain one year. They were squeaking at each other over the rail and I had to hold on to Bratty's leg to keep her from jumping in. And a giraffe once took a particular interest in Boo in an Open Plains Zoo. Boo was flapping away like 90 and this gorgeous thing stuck its considerable neck out over the fence to watch him; seemingly fascinated.
It can also be a distraction from the focus and intensity of autism to be around animals in a therapeutic setting. They really can help everyone connected with the child both physically and emotionally to cope with the condition.
But I loved reading an article in a women's magazine last year that said in a lot of cases the "swimming with Dolphins" thing was not only a waste of money, it actually annoyed the Dolphins!

As for the GFCF diet, by all means if it works and you can cope with it then stick with it. No one needs to have a farty gut AND autism.

What I do not get is why anyone would think this is the ONLY thing they need to do.
I am annoyed when a vulnerable parent, having invested all their savings in Homeopathy, Aromatherapy or €5,000 worth of sound therapy that was going to "open up their child's vocal chords which were damaged during birth trauma"; does not then have the emotional energy or financial ability to invest in anything else.
Like an augmentative communication system that will enable them to teach their child to request their needs and not indulge in inappropriate behaviours. Or a parent/child speech therapy course or even to pay a home aba tutor to observe and tailor a step by step self care routine.
Simple stuff, that that is available on our own fair shores at a very reasonable price.


That is when I have a problem with it.


But I am quite guilty of slipping into the Lourdes trap myself from time to time.


And this dog thing has really got me going;
What if? and
Maybe if we had?
Or if we do get a dog could it give us back some kind of normal life
By doing well,
just about everything that we are having to do ourselves for the kids at the moment.
Like getting Bratty to go to bed and stay there. While I go back downstairs and watch Sunday evening T.V. with my husband, like normal people.

And will it help me to walk up the street with Boo without having my shoulder dislocated.
(think of the Fatboy Slim video for "push the tempo" and that is what a walk with Boo is like)


And before we have even completed the application process the idea of an assistance dog has become a "Lourdes" ideal for us.
I have started to put so much hope into this "next big thing" that I am falling in Lourdes.


Anyone else feel this way?


Please email me on hammiesays@gmail.com


xx


Comments

Anonymous said…
I think I must be very naive,I had no idea people still thought like this.
I saw this attitude when my sister had MS and sat in a wheelchair with people telling her they could cure her and she could walk again.Everyone we met had heard of a therapy that would be a 'cure' but that was over 12 years ago.
Perhaps it is just human nature to search for 'cures' or it helps people tune out from the real hard work you have to put in as a parent to learn how to handle different behaviours.
Thankfully people do not barrage me or my son with cures.
I have to admit I use alot of alternative therapies for my son but nothing I would not use for myself.The sole purpose being for relaxation not for cure.I would certainly never hand over thousands of scraped together dosh.I have lots to say about the people that come up with the cures and cash in,but then they might put a spell on me.....
Hammie said…
You are right, parents are very vulnerable in the early stages, but soon wise up. With regard to the people who want to "cash in"; yes it is despicable. And I apply that to any underqualifed "behavioural therapist" who goes around charging a mint for their "services"; But! I also think that some of the snake oil salesmen actually believe in snake oil themselves. Even if it flies in the face of all evidence, even if the benefits are so minimal as to be unobservable to the rational eye; they must rationalise it somehow in order to sleep in their beds at night.

As for our own government's ability to deny the benefits of a therapy with years of published evidence and peer review; well, Mr Hammie put it very succinctly when he compared it to the Multi-national Tobacco companies trying to cover up the evidence that smoking causes cancer.

But as we say in the trade, the Truth will out.

You sound like you are doing a great job with your son. Thanks for getting in touch, Hammie xx

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