It has been another very busy month for express. We have had lots of meetings and networking opportunities. We have met with like minded community groups and professionals who would love a space in our hub - so we really need to make this happen. Please fill in our survey www.expresscic.org.uk.

We have had another coffee morning where we met lots of lovely new parents. These are developing into regular parent to parent support groups. We even had some grandparents come along too. Our next one is already booked and we have an OT coming along to offer advice.

We had very successful meetings both with our business mentor and with the Council. We really feel that we are making progress and we even have a three year plan :)

Still lots to do and offers of support always welcome!

The Autism Show proved to be very informative and we came away with some fantastic ideas for our hub. Mmmm just need the funding... It was great to meet some of our Twitter friends.

We have had birthdays, family gatherings, transition meetings and what seems like innumerable non-uniform days at school. We have scraped through relatively unscathed!

Just to make you smile - have a glass of wine, we are!

May has been another busy, mostly productive month. Where to start? We had another meeting with some supportive Council staff, let’s hope all staff involved in the process fully embrace the idea of ‘Community Right to Bid’. We have a long way to go with the Council yet but we are optimistic that we can work together to achieve our goal. Really it’s a ‘win win’ for everyone involved! What really has to be taken into consideration is the community and social value of express.

We have met with the NAS and are exploring options of partnership working to provide services and support . Our aim has always been to unite the expertise available and pull resources together. With this is mind we are also working with Dimensions and other local organisations.

Our meeting with the founder of Hao2 opened up opportunities of visualising our hub. Hao2 is an organisation that provides access to employment, training and business opportunities for people with autism via innovative 3D virtual world solutions.

We are meeting lots of lovely young people with autism and their parents and we are consulting with and listening to what people want. As we are reaching out to the local community and local businesses it is evident that there is support for express and what we are aiming to achieve.

We were delighted to have been invited to meet with the lovely Stephen Unwin at a special evening of ‘A Day in the Death of Joe Egg’ at The Rose Theatre, Kingston. Stephen has been very supportive of us and has helped us build up strong links with the theatre. We also had the pleasure of meeting Ralf Little whose performance as Bri was compelling. Sorry Ralf – we may have had one glass too many of red by the time we spoke to you!

Then came a day of meetings. A very successful and productive day. Firstly, we met with Ed Davey, our local MP who really shares our vision and fully supports express.  Then we had a meeting with our panel. We are very lucky to have such an enthusiastic panel with lots to contribute. We are grateful for their commitment to express and for the tasks they have taken on. This was followed by a meeting with our business mentor from the Cranfield Trust. A mentor is what we need – there is so much to do and so little time!

We are also very excited to have been contacted by a casting agency to help find a young person with high functioning autism or Aspergers to appear in a main supporting role. We wish lots of luck to those we have introduced. We feel that it is very important that autism is accurately represented in media and film. It would be amazing if one of our supporters was successful!

Never a dull day at express....

All this while still working, caring and dealing with general (or not so general) family life. We are lucky to have supportive families. Thank you.

May has seen Bank Holidays and half-term. For some a rest, for others days filled with dread as routines are changed. For a light-hearted guide see My Son's Not Rainman Blog

Family talk....

C is high functioning and with him his autism is certainly a hidden disability, so much so even people who know him well will always question how it affects him. If you don’t see it – it is hard to believe it. C does struggle with his diagnosis and to look at him you wouldn’t know the places he goes to or the things he says. C is a ‘hider’ he will do all he can to be the same as everyone else and this concerns me as he gets older. I am concerned that he will be easily led as he is a follower and is vulnerable as he lacks the social imagination to consider the consequences. That said, we are doing all we can to prepare him to be independent with his transition to a new school. His autism may make things more challenging for him but we are always working on strategies to help him. We are very optimistic that his new school will be aware enough to know that the child they see may just be coping and that they will need to get to know him to understand him and bring out his potential. Talking of bringing out his potential, with the right guidance and motivation C can achieve what he aims to – he is now the proud owner of his much deserved ‘brown and white belt’ in kickboxing. The structure, routine and discipline suits him. It also means on kickboxing training nights he sleeps very well!

I’m also pleased to report that C got through SATs week relatively calmly – it was the anxiety before that caused him more stress. Once again this was reserved for us at home. Just a few more dents in the furniture...

As a family we have also been worrying about my brother’s care home assessment. We are reassured that this is just a financial exercise but it is still an anxious time as we are lucky that he is very happy and settled. On his home visits he will definitely be one of our regulars at express as long as we have tea and toast on tap and his favourite music playing.

********************

For T, some interesting developments in socialising. T joined an after school drama club, and whilst verbal he is not conversational or considered 'high functioning'. However bizarrely reading, memorising scripts and intonation is his thing! So he asked to be the narrator – bet that surprised everyone J - but the member of staff running the group is fantastic with him and in general! So narrator he became woo hoo proud and slightly scared myself to be honest! But more developments to come as one day well into rehearsals the lead player was off sick – Who would play the character??? Up pipes T with all the lines so he gave it a go and......... success in fact I was told other members of staff were rounded up to come and listen and watch! He was so good they made him understudy!!! Never underestimate.....

On another note we had the very rare occasion of a child coming to tea! Ts excitement was palpable for the entire weeks run up and school commented how excited he was especially on the day of the big 'date' – it was wonderful to see the child interact with T, her understanding and patience with T was very touching and heart warming to watch.

********************

Just to make you smile... I was given the grand title of “Best remote finder EVER” by T this week as momentous disaster was averted when said remote was retrieved...... In addition when a requested APP was not purchased the next day I was told “You need to learn to say yes” – I think we’re ready for some comedy roles next!

What an amazing month we have had, where to begin...

We started off the month with a coffee morning to mark WAAD - World Autism Awareness Day on 2nd April. Thanks to everyone who came and to Rose Theatre Kingston for being our hosts. The day started off great, lots of enthusiasm and support for express, lovely to see the community coming together.

The day got even better. We are delighted to report that our nomination of an asset of community value has been successful. It was especially poignant to hear the good news on World Autism Awareness Day. We are now working with our local council with the goal that express, as the first community group to nominate an asset of community value in the borough is also successful in acquiring it for the benefit of the community as a whole. We feel this is a fantastic chance to develop long term support for young people with autism and their families in the community. After consulting with families it is very clear that there is a strong desire and need for express and our vision. Our first introductory meeting with the council went well, now to prepare our bid. We have a very busy time ahead and all offers of support are welcome.

express also attended the Inclusive Jobs Conference hosted by This is Our Community. What an inspirational day, the speakers, the staff and the fellow attendees. An opportunity to work together.

Our Comedy Night - 'My Son's Not Rainman' - proved very popular and we sold out the cornerHOUSE two weeks prior to the night. It is a testament not only to how good John Williams show is but also the strength of our community. We were overwhelmed on the night with support and good wishes. The auction turned into a frenzy of donations, and in total the night raised £3,000! Thank you to our sponsors, the cornerHOUSE, John Williams, Tom Deacon, Sion James and all those who attended. We had a waiting list for tickets so demand for another night is high, watch this space...

We are also delighted to be able to tell you that John has agreed to be a Patron for express.  John has always supported us and we absolutely love his show. A must see!

We attended a public meeting for The Rise School. If you haven't heard about the school please do look them up. www.theriseschool.com Their proposal is fantastic and supported by Ambitious About Autism and Dimensions. Please please The Rise School come to Kingston!

Talking of Dimensions - we are also very pleased to say that we are receiving support and guidance for our project which will be invaluable in taking things forward.

Not forgetting we also had the school holidays this month, and a trip to the Natural History Museum proved very positive. We used our icount cards to avoid nightmare queues and the staff were clearly autism aware although some members of the public still need to be reached. A few stares and tuts... perhaps we should have queued with them to speed up that awareness...

A trip to the theatre to see The Curious Incident of The Dog In The Night-Time was a much needed break. The show is absolutely brilliant and innovative, it brings autism awareness to the West End. Fantastic that the show won 7 (prime number ) much deserved Oliviers! Another must see.

On another note a confusing letter from school was received regarding our IEP review meeting this term. "Would I like one now or wait until the end of year transition meeting?" Hmmmm review targets when we have the chance to address any issues and support progress or wait until meeting ineffective... Which do you think a parent would choose?

Along the same lines having had a few years break from professional input as supposed to be getting from statement (just not happening), we are now back on the therapy trail! Expensive, emotionally draining but always hopeful of seeing some results, progress is moving forward, whatever your pace.

It's amazing the range of expertise parents are expected to have, legal, medical, therapeutic, educational, financial, etc etc

Just to make you smile... when your son is bored and stressed in the shoe shop waiting his turn to have his feet measured (apparently he doesn't need to be there), don't ask questions... He was hanging upside down from the chair, so I asked 'do you see anyone else upside down?' and he replied 'yes, everyone!' Well I did ask...

Our pursuit of premises continues....

We have now nominated an asset and are waiting to hear what will hopefully be a favourable outcome. As a CIC we fully comply with the criteria to nominate and the asset has been a community site as far back as records show so we can't foresee any issues but you never know....

We are also pleased to have had a very positive meeting with the Cranfield Trust and we look forward to receiving the benefit of their expertise. In addition we have put together an Advisory Panel for Express to include parents/carers, professionals and young people with autism to ensure we are consulting with the community that express will be supporting and using all expertise available. The parent panel members represent young people with autism across the spectrum and age ranges. 

For those of you that know us you will know that our children are at different ends of the spectrum and they are both lovely unique little individuals (as are their siblings). Whilst they have their differences and face different challenges they do however share the most common trait - anxiety. This shows itself in various ways, for one person this can sometimes be very challenging behaviour and for another this may be the need to know what's next and to be told when things are going to change. This can also manifest in withdrawal from the situation and if you're not autism aware you might miss it.

This month saw the arrival of the long awaited school trip to PGL! 

For the one going this meant the build up of anxiety about what to expect, what he would be doing when he got there, what the food would be like, who would be in his room, how would he know what clothes to wear, what would he be expected to do and the biggest worry would be how would he ask for help? These might seem like the normal worries of a young child going on their first school trip but believe me when I say the worries, anxieties, behaviours are so much bigger for a child on the spectrum, however high functioning they 'appear' especially when their biggest fear is not being seen to be different.... I am pleased to report that he enjoyed the experience and took part in all the activities and we just dealt with the 'release' when he got home. The effort to hold it all in while he was away was exhausting. Only in the safe environment at home could be just be...

For the younger sibling with autism this meant his brother and his class teacher 'disappearing' from his life for a week. His class therefore had various staff (teacher/supply/student) in place resulting in his timetable not always being followed. Result = one very upset little boy, it must have seemed to him that his whole world was turned upside down. Thank goodness he has a supportive 1:1. Needless to say it felt necessary to suggest in the home school diary that autism awareness training for all should be a requirement. - There's always that one day course that seems to cover everything you need to know about autism :) As a parent you never stop learning...

Our comedy night on Friday 19th April at the cornerHOUSE is proving to be very popular so if you are planning to come book your tickets now as we don't think we will have any available on the door! Buy your tickets here.
We are meeting some lovely people who are doing some great work in the community and it will be a pleasure to all work together. We were also touched to have received a very kind donation which will help to fund the coffees at our WAAD coffee morning at The Rose Kingston on 2nd April. 

Just to make you smile - "baby frogs come from frog spawn!" Oooh very good bit random but still, and what are baby frogs called? Slight pause and "Froglets!" Well we think that's a far better name :)

Well we have had weeks of ups and downs, meeting after meeting and at times our patience has been tested to the limit! On many occasions we have used our mantra 'and breathe'....The more support available the better surely?

We have met with some very supportive autism parents, some inspirational professionals and some autism cynics (in this day and age it is hard to believe that we are having to explain the many guises of autism - but then again it is the 'hidden disability').

We have met with like minded people who want to see express a success in the community and who have been willing to share information and offer advice. We have also met with obstacles from unlikely sources...

Our search for premises goes on. We have identified a potential site and this has led us into the world of 'community right to bid'. This legislation is so new and appears to be open to interpretation which is leading to email 'ping pong' with the local Council. Not sure who's advising who but we'll get there hopefully. Luckily we have some great supporters and advisors. All further support is very welcome!

So let's get fundraising! You can support us at www.localgiving.com/charity/expresscic either by donating or setting up a fundraising event. We have one lovely volunteer who has offered to jump out of a plane for us - any others?

Our next fundraiser we have planned is a comedy night with 'My Sons Not Rainman' at the CornerHOUSE, Surbiton on the 19th April 2013. We are so excited. This is an Edinburgh preview and having seen it ourselves we can say that this is one not to be missed!www.mysonsnotrainman.com/what-people-say . Further details to follow.

On another note we have had the dreaded IEPs to deal with. For those of you who don't know, these are 'individual education plans' where you have the opportunity to go into school and meet with the SENCO, teacher and any other support staff to review and set targets. This could be very useful and we all have different experiences. However to be told that your diagnosed autistic child is 'the least autistic child I have ever taught' is one of those 'and breathe' moments we referred you to earlier. A triple A moment, (not referring to the UK economy) ie. Autism Awareness Alert. Enough said. However this is a very useful link

www.autism.org.uk/living-with-autism/understanding-behaviour/behaviour-common-questions-answered/different-behaviour-between-school-and-home

Hope your half-term and going back to school was uneventful in the nicest possible way.

Just to make you smile - autism can be surprising when your previously tactile defensive child decides to tell someone in no uncertain terms 'hey! I want that!' when he is referring to a python round his neck. You can only stand back and be amazed and stand well back is what you do ....

Trying to get the message out about express has taken us into new worlds this week. Two Mums who couldn't announce raffle ticket winners at their own fundraiser (thank you Keeley!) have now given newspaper interviews, a radio interview and are launching into arranging a comedy evening fundraiser. Look out for details soon!

We do still need lots of support and are looking to the local community and particularly local business to offer their skills. You can also support express at www.localgiving.com/charity/expresscic or get your thinking hats on and let us have your ideas for a fun fundraiser.

We are meeting some lovely and inspirational people through express who share our vision and want to see express in the community serving up coffee and support very soon!

If you haven't already please do make sure you complete our survey http://www.surveymonkey.com/s/B2VLHK8 if you are a parent/carer of a young person with autism in the SW London area. That includes extended members of the family too!

Just to make you smile - apparently if your young autistic child takes a DVD from his older sibling it's fine because he did it 'because of the moonlight'. Now you can't really argue with that...