Saturday 26 November 2011

Unwanted hand gestures

J has a very funny little habit that causes me to worry.
He sits in the very back of my car - I have a 7 seater.
When I am driving I have noticed he hand flaps a bit, arm wiggles and generally looks as if he is doing rude 'signs' to other drivers!
I am now on alert and constantly telling him to put his arms down.
Tha last thing I need is some testosterone fuelled road rager thinking my car is annoyed with him/her and takes it upon themselves to turn on me.
A lot of people will realise it is not an adult sitting there and may pass it off without much thought or care, but I have witnessed a child of about 4 giving one of the more popular hand signals in this country (make a kind of fist and move left to right) to a motor bike rider who dared to be in the way of this 4 years old fathers white van that almost hit him as he pulled out of a side road in front of him. The bike rider was narrowly missed by the careless van driver, but instead of the van driver apologising, his 4 year old gives the hand gesture! And to top it off, the front of the van had a female passenger and two other children in it, all with no seatbelts on and the 4 year old almost hit his head on the dashboard! The slang term 'chav' sums up that van and it's occupiers quite well really!

Friday 25 November 2011

Catching up

It has been a while since I blogged, but I have been ill after an operation and have felt very low and tired. Caring for the children and trying to get through the pain have been my main priority.

I have found out that I can get my own GP to refer for an ADHD assessment. Whether that will be anytime in the next 5 years who knows, but at least I am in control of something, and not just having no choice but to leave it all to others, hoping they get a hurry on and sort it for me.

The melatonin is still working its magic.
I still keep the dosage on the low side as I don't feel he needs the full 6ml prescribed.
He has taken to sleeping back on the top of the stairs again. Curled up and sleeping away.

Head banging is still in full force. "Banginy head" is what he says now just before he does it and then "no banginy head" after. Or "you're welcome". Learned phrases.

He drew this picture the other week. I did'nt take much notice of the detail until someone pointed out the tears on the faces. It was then I realised the "sad face" noises J had been doing ( full on boo hoo hoo crying -very dramatic but just that, drama. He was doing it for fun.) were being copied into drawings by him. I think he has been learning emotions at school hence all this "ahuh ahuh ahuh" noises and the put out bottom lip.





 

Wednesday 9 November 2011

Cuebunger anyone? Oh and the results are in.

Cuebunger. That is what J has been requesting this week. He means cucumber.
So we are up to him eating peas, carrots, a little bit of sweetcorn when it is corn on the cob and not tinned and cuebunger.

I have all the results back from the genetic tests and he has 'passed' them.
I thought that would be the end of it, but we have been asked, as most parents who have been through the same are asked, to join a genetic programme that swabs your saliva and stores it in a huge database of other children 'without diagnosis' and test it for either really really rare genetic conditions which were not tested for before or look for new ones which have yet to be found.
I have been told a diagnosis can take up to a year to come through, and even then it may be years before they find it if it is going to be a 'new' one.

I have joined SWAN - Syndromes Without A Name.

The geneticist is adament he has a genetic condition and she was really surprised he did not have SMS.

So even though J has the autistic label, it is presumed he has an undiagnosed syndrome that as with a lot of learning difficulty disorders, is similar to autism and its traits, and so it is easier to give the label so that we can then qualify for help.