Friends Relations Countrymen

So where was I? Oh yes, Sam had just been given a diagnosis of ASC - Probably Aspergers and it was now time to tell our family and friends. We hadn't shared our concerns with anyone apart ftom one cousin and the health visitor so we were not looking forward to telling the world.

As it happened it wasn't as bad as we feared, although a few people said that they had been worried about Sam but didn't want to say anything. Ok, they were not to know that we were already seeking specialist advice so it would not have made any difference to getting him diagnosed as early as we did but had this not been the case then these worries could have been the spark to get the ball rolling.

It is never easy to tell someone that their child is possibly not the same as their peers and some parents would likely react angrily or be in denial if you raised the issue - it could even lead to the end of a friendship. 

Sometimes being so close to the situation means you don't always see what is staring you in the face and it is helpful to get another view - Someone who gives you a heads up isn't doing it to be horrible, it is because they care and they want you to get the correct help as early as possible.

It is a shame that those around us didn't feel that they could raise the issue without causing unnecessary stress.

If someone takes the time to tell you something may not be right - they have probably been through a whole load of soul searching before they said anything so be gentle with them as they only want what's best for their friend or family member.

In between speaking to the health visitor and then seeing the paediatrician Sam started at the nursery of our local primary school. In the beginning it was a nightmare which involved daily telephone calls from the school to relate exactly what Sam had been up to. We then had a meeting with the SENCO and they decided to put an LSA with him to mitigate some of the behaviour issues.

The LSA who was assigned turned out to be someone who I went to school with although we didn't know each other very well. She has now become a very good friend to all of us and although she only worked with Sam until year 2 the effect was little short of miraculous.

She laid the groundwork for the subsequent LSA's throughout primary school who then made sure that Sam was fully included in school activities and after school clubs.

Shortly after the school put these measures in place Sam was given his diagnosis and the funding went a long way to making his time at the school as pleasant as possible.

Sam got Disability Living Allowance until he turned 16 and now gets Personal Independence Payments and because of this it allows my wife to claim Carer's allowance. This helps immensely as she has been unable to work because she needed to be able to go to the school at short notice if any problems arose.

When Sam was small my wife's status of carer was only useful to get the allowance but now, in this new autism savvy world it comes with a range of other benefits. The most useful of these is that most places do special deals for carers. This usually consists of free entry for the carer to most attractions around the country if you show them proof of being a carer. This has saved us a huge amount of money when on holiday or just on days out.

Most places don't advertise the special rates but you only have to ask and the majority will be happy to help.

Sam always had trouble queueing and some of the queues we've been in were enormous. On one occassion we were queueing for the Natural History Museum in South Kensington when Sam suddenly announced he needed the toilet. Do you think we could find one in the vicinity? As a last resort, and screwing up all my courage, I walked to the front of the queue and asked if it was possible to take my autistic son into the toilet inside the building if we then came straight back out and rejoined the queue. Absolutely not replied the security guard - if I let you in you can stay in - there is no need to re-queue. He fast tracked the 3 of us through the bag search and pointed out the toilets before telling us to have a great day in the museum. What a very very nice man.

Now we're not the type of people to take the micky so we don't use Sam's condition to immediately jump to the front of every queue but it comes in really handy when the act of queueing is likely to cause a meltdown. We had a similar situation at Paignton Zoo and they opened a seperate till so we could avoid the huge crowds queueing for 200 yards back up the hill.

Sam doesn't like theme parks but I'm reliably informed that many do fast-track wristbands to allow disabled children to go straight to the front on rides that are likely to have long lines of people. 

If you are planning a day out or intending to visit attractions on holiday remember to ask for carer's rates and if your child really can't queue then they'll be someone about who will be pleaed to rush you through - The level of autism understanding at places of interest is so much better than it was a few years ago so make sure you take advantage of it.

If you find any of this useful then feel free to let me know on Twitter (@kevin_cannon) or by email (torchwood1968@gmail.com)

If you would like to send in your own experiences then I'd be glad to include them or if there is anything you'd like me to cover then just get in touch. Follow my blog with Bloglovin