Hi Guys.
I am mum to two children (7 and 5yrs).
When my youngest was about 18mnths old I really got the feeling that things weren't quite right. (he was 10 weeks premature and so I had always been vigilant)
The tantrums were a real force to be reckoned with and went beyond any realms of reasonable behaviour. A trigger time was when I had to collect my eldest from school, along with any incident which involved breaking with agenda.
After many trips to the health visitor etc I finally broke down in the GP's office begging for help, whilst my youngest built a fantastic tower out of bricks. I was offered antidepressants. I declined the offer and was eventually pacified with a referral to a paediatrician.
After an hour the paediatrician told us that our child has aspergers syndrome. The next two hours were spent doing an in depth assessment. We knew nothing about aspergers at that time, but as things were explained a few things started to make sense.
I managed to get onto the Early bird programme and had fantastic support from the Educational Psychologist up until my boy started school. It has spiralled fantastically downhill ever since. I have spent the last two tears battling and getting nowhere.
My son has a sensory stimulus problem which results in inappropriate behaviour.
The school wouldn't acknowledge any problems to start with - my boy is very high function, and so dazzled staff with academic ability, which meant that they would not recognise his social problems. I was helping in school and could see the behaviours which I had worked so hard to address before he started school, ignored.
The Senco at the school would not listen to me at all and dismissed my concerns. I tried to get a referral to clinical psychology. When the school doctor contacted the school to get some background info - the senco told them that my son had no problems whatsoever. Thus ended his first year at school.
When he went into his second year, the change of routine coupled with no preparation to act as a damage limiter resulted in my boy's behaviour escalating. The school still would not accept that there was a problem. In desparation I had to ask parents of his favorite children (ones he was most fond of touching) to write letters of complaint into the school. That was probably the hardest thing I've had to do.
The school reluctantly wrote an IEP which wasn't worth the paper it was written on.
I eventually had to involve the school govenors to get the school to listen - which is ridiculous considering my son has a diagnosis.
I met a very helpful ASD outreach worker at the school on my request. She was the first person in nearly two years who not only listened to me, but agreed that my son's behaviour although subtle - is a significant problem. She recommended desensitisation therapy via occupational therapy.
My GP duly made the referral. I had a letter last week from the 'patch team' who have never met or assessed my son. They informed me that the Occupational therapists don't want to get invoved, and that they recommend he should be seen by clinical psychology as drug trherapy should be a consideration.
Those of you who have made it this far through my ranting - I thank you for persevering.
I am coming to the end of my tether now. I am exhausted with meeting brick wall after brick wall. My husband leaves the dealing with drs etc to me, but has just started to realise that I am getting burnt out.
If anyone has any ideas they would be most gratefully received. Have just got the name of a clinical psychologist in london who specialises in ASD from the NAS. Just trying to fathom whether we can afford to go private.
In the meantime I love my kids dearly. It would be nice to have some time to focus on the good bits for a change. The constant battle gets to my eldest sometimes - especially as she puts up with the comments at school from the other children.
Apart from all that things are peachy
