Thursday, 19 May 2011

The paediatrician appointment

Melatonin. The sleep drug. We might just be getting somewhere. At last!
The paediatrician has agreed to write to my GP and tell her to prescribe it.
As I am 'CC'ed in on any letter sent out to others I will know my GP will have been sent a copy, and when she does I shall be ringing and ringing until she has read it and moves this whole debacle along to a proper conclusion, and one I have been asking for for such a long time.
As for everything else I needed to discuss with the paediatrician, we covered all bases. Nothing was left unsaid. She wrote tonnes of notes. And I fully trust that everything she said she would do, she will, and without me having to nag and moan.
Baby W was in the papoose and fell asleep so I was able to concentrate wholly on our meeting which made a big difference. A good morning all round!

Wednesday, 18 May 2011


Well after over a year of J having B/O after exercise or a lot of stress, he is now showing signs of hormonal activity on his face, or rather his nose. I spotted ( sorry!) a crop of blackheads on the end of his nose and small red spots around the bridge yesterday morning.
He will only be nine years old at the end of this month as well, so it is all rather earlier than expected.
However it probably explains why he has become so hyper and manic with moods swinging from happy to screaming within the space of a few seconds. Those pesky hormones are striking up a storm inside of him and because there is no way I (or anyone) can explain what he is feeling / why he is feeling this way, and he can not convey it to me, we are just going to have to ride this storm until the testosterone settles down again - so I've block booked out the next nine years to deal with it!
I am seeing the paediatrician again tomorrow, and as I trust her implicitly ( as she has so much knowledge, experience and understanding of autism and it's wide spectrum) to offer me the best advice on coping with J and also on how I can reduce the stress for him.
As for the sleep issue I am hoping this will not be sidelined and blamed on puberty as I am not waiting nine years for them to allow puberty to complete!
There is no point in getting one of those books written for children on the cusp of puberty, which explains all about their bodies and the opposite sex. I had one of those given to me aged ten and I remember reading it aloud to my friend, but miss-read one word, which to much embarrassment to me we both referred to something by the miss-reading pronunciation of it for at least a year! So if I couldn't get it right, I certainly know J will not.
I do consider myself lucky that J is a boy however as I do not have the worry and anxiety over the most major aspect of puberty for girls - periods. I would want my daughters puberty to be delayed if it was starting this early, or something administered to stop the period appearing altogether (such as some of these jabs used for birth control).I am so glad I do not have this to worry about on top of everything else.

Tuesday, 10 May 2011

We have a start

We have an appointment with the paediatrician - hurray!
As it was only a few months ago we last saw her, and it is not usual to see them more than once a year, I had to approach my key worker at the local disability team to see how I go about it.
Luckily for me I have a good key worker, thankfully, and she told me to leave it to her to organise. I did. And she came back within days with an appointment for only two weeks time.
The paediatrician office secretary had said that there were no appointments until July at least, but my key worker explained to the paediatrician directly why I was desperate for an appointment, and so she has made a special booking, not on her ususal working day, to just come out and see me. I am very grateful, and will tell her so!

*The issues of sleep (or rather lack of) and the no can do attitude from my own GP surgery and everyone around us.
*His genetic appointment which has been delayed for a while now.
*He has developed a foot problem. The same it appears that I suffer from, and have spoken about in a     previous blog entry. He has the same outward symptoms as myself, and mine started at around his age too.
It is a physical disability that has no real medical help for. You just learn to live with the pain and the seized up foot muscles.

*His behaviour has gone down hill not just at home but at school too.
*Constant head banging.
*Mock crying followed by hysterical laughing.
*Sniggering (at nothing whatsoever).
*Blowing raspberries (when he is stressed).
*Forgetting simple things such as where he has put something down, not one minute before.

The boy needs help in getting to sleep. He obviously has little or no natural melatonin which is common in autists. And to be told by the medical profession he can't have it prescribed (when a few of my friends children have done / still do)  but can be prescribed an anti histamine (which supposedly has a side effect of drowsiness - it did'nt) is really getting me down. You can buy melatonin is America from supermarkets. In Britain you have to jump through hoops. Battle through rediculous red tape. Talk to clueless GPs. Cry. Beg. Plead. And then do what I am now doing and saying "enough"! No more BS. No more sleep diaries. HE NEEDS MELATONIN. Otherwise I will be talking to my MP and discussing the issue of negligence not only towards my autistic son, but to my other two sons, myself and my two labradors.
Wish me luck.

Sunday, 1 May 2011

Dr Crapola promises a cure

Sometimes when I Google autism and have not specified a particular search I find myself being bombarded with 'cures', therapies, courses and miracles ('for only $99.00' (£70) ).
There is no cure for autism. There really is no such thing as a miracle concoction of vitamins and minerals and secret additives that will reverse autism. Yes, there are vitamin supplements that may help with certain behaviours associated with autism such as hyper activeness, lack of concentration etcetera, but these are not cures and for a lot of the children there is no real noticable effect on the original reason for trying them.

There will always be someone who knows someone whose brother was working with this woman, whose mother's next door neighbour's friend had a sister whose child had autism, and with some magic liquid with which the marvellous parents bought on the internet, their little Johnny was cured. I may just hazard a guess here, but if this is true, and Chinese Whispers and tall tales included, then maybe little Johnny did not have autism at all to start with.
Some children are expected to be brain surgeons by the age of three and when they are not perfoming as well as mummy and daddy expect, or a diagnosis happy paediatrician who dishes out willy nilly a verdict after only one meeting, an easy one to label the child with is autism. Now I am not belittling autism at all or the diagnosis process or parents who are worried and trying hard to find out if autism is what their child does really have; more so I am talking about a certain minority of pushy parents who can not accept their child is not the leader in their nursery class and excelling at quantum physics by four years old. This child is labelled quickly but then, as time progresses, and they naturally catch up with their peers, (and after mummy and daddy have spent money on cures and treatments not recommended by the NHS) little Johnny is declared cured. 'Eureka! It worked! Pity those poor un-educated fools who will not pay for the same cure for their child.' This tale is then told and re-told, and bits added or subtracted to suit the story teller and the subject and there we hear of the miracle curing of so and so's little Johnny.

Back when we were attending the weekly session where J was being assessed whilst he played with a handful of other children, also being assessed, us parents were invited (with no option to say no!) to attend a course in learning more about autism, the impact on our children, the ways we can help them and understand them more.
We were shown videos of parents from various countries in their home setting, dealing with the day to day life of an autistic child. I was struck by the difference in how these parents dealt with their children. Some parents had flash cards, constant banter and nagging of their child to speak and copy words, noisy, unrelenting teaching and therapy sessions ; whereas the other parents were calm, they were softly spoken to their children, they played at their pace and did not talk about the latest intervention that claimed it would radically change their child.
I found it quite sad to see these children, lost within their own world, being made to act 'normal' and trying to almost bash normailty into their heads with the constant round of therapies.
To me a therapy is something relaxed and calm, not someone almost yelling words at me, flashing cards in quick succession in front of my face, and not letting the child be themselves.

With the rise and rise of the internet there are thousands of forums for parents to join. There are sub groups tailored for a specific genre, and within a forum I came across for mums there was  a sub group for special needs children. The majority of the posts created were related to autism. Questions about autism. Links to autism. Suggestions. Then there was someone posting links to supposed cures. She was replying to a fellow mum asking about how to help her autistic child aged four. I looked at the links and they were all about how all we need to do is re-programme the childs brain. It involved  an intensive course which to me looked too much for a neurotypical adult to cope with, let alone a child whose world is already so scary and so confusing.
When I replied that there is no cure, that these false promises were laden with a hefty price tag, a very dodgy 'doctor' ( we have learnt that anyone, for a fee, can obtain a certificate on the internet and become a doctor of X or Y, usually something obscure and non-commital, such as Dr of Modern Scientific Generic Crapola) , I was told I was doing my child a diservice by not trying everything to cure them. But, as was my final response, I was doing the only sure fire, guaranteed thing I could for my child, to make them happy, secure, safe and loved ; I accepted them. I accepted they had autism. I accepted that as of this moment, no cure had been found. Yes there were advances in discovering why autism occurs and more advanced diagnostics, but, there is no cure.
I left the forum after that, never to return to see the endless bile and spiel promising something that would not come forth.

Rather than tar all therapies as a con I am adding that there are a lot of  out there that are popular and safe and make no claims of being a cure, rather a positive effect on these children. Light therapy, music therapy, animal therapy, swimming, dancing, sports, singing, art, tactile, and sensory. These all sound lovely. No yelling in your face like an army sergeant, looking at quick changing images, being made to sit still and obey.

The one valuable thing I learnt from this course I attended was watching a video clip of how a child with autism and a child without react to a screen showing one flashing white dot. The flashing dot went on for a few seconds and then was joined on the other side of the screen by another flashing dot. The non-autistic child switched their view to the second dot that appeared whereas the autistic child did not. They had not noticed the second dot appear. I learnt how J sees his world. How he does not see something that appears so obvious to us, non autists, and how we need to appreciate this and accomodate it within our lives.

Instead of packing your child off to some latest cure that you have paid handsomely for, a cure that is filled with so many promises and big flashy words, go and buy some child safe fairy lights, fix them up somewhere safe, and let your special child look at them, twist them, admire them in their own way, and see how happy they are. If fairy lights are not their thing, find something, fun, non pressurised and safe for them.

A happy child is an accepted child.