May 2010 Member Q&A: NickyB (Nicky)

Hello everyone. I am looking forward to your questions :D

In the meantime, in answer to Elena's questions:

1. What's your story - how are you involved with autism?

My son, Stuart (now 7), was diagnosed when he was 4 with high-functioning autism. We had suspected someting was wrong from an early age, as he was developing very differently from his older brother, Matthew. I have since thrown myself into learning as much as possible about the condition and how I can best help my son.
We have just been through the statementing process, which was very stressful, and we have finally secured him a place in an ASD unit from September. I am very keen now to help other parents, and also to challenge the education system with regard to special needs, especially the process for getting a statement and the lack of places in special schools.

2. How did you find talk about autism and how long have you been with us?

I must be honest, I can’t actually remember how I came across talk about autism, but I have been here pretty much from the start. It has been a huge privilege to meet so many great people and too see the forum grow over the last year or so.

3. What is your top tip to pass on to someone whose child has recently been diagnosed with autism?

No matter how prepared you are, hearing a doctor/consultant actually say that your child has ASD is a shock. Give yourself time to let it sink in, and remember you are not alone.

4. What has been one of the most difficult encounters you've had with regard to autism?

Actually, that was fairly recent and I have posted about it in the ‘rant room’.
Stuart had a meltdown on the bus a few days ago, just as we needed to get off. I tried to reason with him while the bus driver patiently waited, but he wasn't going to budge. I realised we were going to miss our train if we didn't hurry up, so I made the decision to pick him up and carry him off, kicking and screaming, whilst also struggling with my bags.
Obviously I was the centre of attention with lots of people staring and tutting.
That doesn't really bother me as I realise most people have no idea what's going on and just see a badly behaved child kicking his Mum!
Then, as I struggled down the bus, someone said 'retard' very loudly. Then a man said to Stuart  'you - behave'. Then someone else said 'you need to give him a good hiding'. It was as if that first comment had opened the floodgates. I got him off the bus and then turned round and suggested (politely!) that a little understanding wouldn't go amiss. The bus driver was great and asked if I was OK.
As I say, I understand that people are going to stare and I would be a hypocrite if I said I'd never done that myself in the past, but I was very shocked by what they said.

Looks like we still have a way to go in changing attitudes!

5. If you had to describe autism in no more than 3 words, what would they be?

Enlightening, Challenging, Enriching (if that’s actually a word!!)

And just for fun:

1. What would your dream holiday be?

Oooh there are a few places I’d love to see. I guess if I had to choose it would be the Canadian Rockies. I love the idea of the unspoilt scenery and the sheer scale of it.

2. If you got stranded on a desert island, what 3 things would you take?

Well I’d definitely take this photo (click me) ! I’m not sure I’d need anything else but I guess I should really take my hubby and kids!

3. Tell us something that you really enjoy doing.

Apart from my family, my other great love is music. I love to play the piano and clarinet and  I sing all the time, much to the annoyance of my hubby and boys!!

Nicky x

Hi amberlight :)

Blimey, that's a good question!!

I guess for the long-term, the best way to change attitudes is from a young age. If the parents have the kind of views that those people an the bus have, there is a fair chance that any children growing up around them are going to be infuenced by that. The school Stuart is going to in September is an autism unit attached to a mainstream school. There is also a unit for physically disabled children and those with severe learning difficulties. The children from all of the sites regularly get together, so the mainstream children will (hopefully) grow up with fewer prejudices than those who don't have this kind of opportunity, and the children who are in the units will also benefit from the social interaction. In an ideal world, all mainstream children would take part in this kind of 'reverse inclusion'.

In the short-term it's difficult to think of what could help. I think there are a lot of people who are scared of any kind of difference, so again I guess it's a question of showing them that people with ASD are just that - people who happen to have a condition which can make things difficult sometimes. Some of the programmes currently on TV are helping with that - although they have to be very careful as to how they portray people.

Personally, I have always told anyone who will listen about Stuart's autism. Some of my friends were very surprised as they didn't see anything different about him. Sadly, some of them also distanced themselves from us - I think probably because of that fear of difference - they think they have to change how they are with us for some reason, and aren't quite sure what to say.

I don't think I've actually answered your question after all that (maybe I should be a politician lol!). I guess all we can do is to keep plugging away and try to get people to think for a minute before they judge us or our kids. A slow process, I think!

Nicky x

Thanks Claire :)
I am constantly amazed by Stuart's attention to detail. For instance he has noticed that on some newer models of Volswagen cars, the headlights have a little 'VW' logo on them!!!
He is always coming up with these sorts of observations, and I have found that it has made me slow down and notice the little things more. That, along with a greater understanding of people's differences, would be the most significant things I've learned since having Stuart.
Now, I defy you to walk past a Volkswagen without looking at the headlights!!
Nicky - Community Champion

Hi Tracy :)

Stuart's current shool have actually been brilliant with him. They have been very flexible in their approach, and are willing to try anything which may help him. Thay are also very open to any suggestions I have. I am aware that this is quite rare, and other people have more battles with their children's school than I have. They have a very high proportion of SEN children, and although that stretches their resources, I think it's also made them very aware of all the issues the kids have, and has also meant that most of the staff have had at least some basic SEN training.
The reason we have moved him is, despite their considerable efforts (and ours!), we don't think that mainstream is the place or him. That is where I think the current system is wrong - there is almost an obsession with keeping SEN children in mainstream, and consequently there are very few special school places (27 in our area, covering 3 very large towns and surrounding areas!)

So, to answer your question, no I haven't lost faith in the mainstream system, and I believe it works for the majority of SEN children, but I also feel that there needs to be much greater flexibility in the availability of special school places. It is such a long-winded and difficult process to get a special school place, and it really shouldn't be so hard.

Here's hoping the new government (assuming we get one sorted out soon!) will address this issue urgently.

Nicky - Community Champion

Hello Elena and welcome back :)

I haven't played my clarinet for years - it's not something you can just pick up from time to time is it? It's surpisingly hard work to play but a beautiful sound. Right, that's it, I'm going to get it out and dust it off now! As for the piano, I do play most days but not lately, as it's horrendously out of tune :o Perhaps we should start a Talk About Autism band?!

We're taking Stuart to see his new school on Friday - I am just hoping that he likes it!!

When he was first diagnosed, I found support mainly from friends and family, and also from forums like this one. Where would we be without the internet? The Family Liaison Officer at Stuart's school has started a support group for families affected by ASD. It's called TAPS and is open to anyone, whether their family member is diagnosed or not. I have been helping with it, as I know the FLO well from working at the school myself. It's been a bit of a slow starter, but more people are coming every month now. There are a large number of children in this area with autism and related conditions, so hopefully it will go from strengthy to strength.

Personally, I don't think you can ever have enough help and support - I know some people find it hard to ask but i am always very happy to accept (and give) any support possible.

Nicky - Community Champion