Mookamoo

Hi - Hope this might be of interest to some. Suffolk Family Carers are offering a Free Wellbeing and Resilience Session for Parent Carers of children or young people with ASD There are a few places left on this free session for parent carers. It is being run by Sue Ryder as part of a joint project with Suffolk Family Carers and is aimed at increasing the emotional resilience of parent carers, focussing on their own wellbeing. Wednesday 6 July, 10 am - 12 noon Garden Room at Red Gables, Ipswich Road, Stowmarket, IP14 1BE Booking is essential as places are limited. Please contact Suffolk Family Carers Link Worker, Rachel Crooks on 07342 080022 for further information or to book a place, as soon as possible

For us it was when Ethan was a about 3 years old. The normal toddler tantrums were a lot more extreme and unreasonable that our other children and his peers. It was then we started looking at what was different about him. There is ASD in the family, so it didn't take long to read up on the behavioural aspects, most of which fitted him - especially the need for routine and the issues we had when the routine was broken. He eventually got a diagnosis of Aspergers aged 5. After a fair few bumps at Primary school with a less than understanding headmistress , we are fortunate that is now at a very good school and in mainstream education - and thriving. He is almost 11 now and we know we have adolescence to get through but he is amazing to be around.

My Wife was diagnosed with Irlen. 2 children in our family - one with a diagnosis of AS and one without were also diagnosed. We did it through our 'normal' optician, (http://www.patrickandmenzies.co.uk/visualstress/index.html) not an Irlen centre so it was cheaper, plus they gave us some money off the frames. The main cost seems to be that they have to send the lenses off to be tinted. Another problem is that they mentioned you could need a new set of lenses whenever your hormones take a change, such as puberty, illness, menopause etc. It has made a big difference - my wife can now read without getting over tired and one of the kids now now sit through a whole TV programme without having to bounce around.

http://www.sciencedaily.com/releases/2010/...00609131637.htm If nothing else it seems to continue to disprove the vaccines theory

Can't help you with the socks but we had a similar thing with pants. We swapped to boxers for a bit and found it helped as the main problem was his trousers touching his skin.

Hi The West Suffolk Branch of the NAS are doing their annual stint at the International Kite Festival at Rougham. There will be a rainbow 'comet drop' to raise money and then all the members (and visitors!) are all doing a display at about 2pm on the Saturday and Sunday. Its good fun and you get to meet other ASD children and teens and the parents get to meet up. More details and directions are here: http://wsnas.blogspot.com/2010/05/kite-festival-details.html

Hi The West Suffolk NAS are having a get together at the The International Kite Festival Rougham Airfield in Suffolk. Anybody interested in meeting other famililies or others with a diagnosis, come alone. They will have a big tent and kites. http://wsnas.blogspot.com/2010/04/come-and...-our-first.html

Hi Anyone in Suffolk who would like to come to the cinema, the West Suffolk branch of the NAS are having an Autism firendly screening of Nanny McPhee 2 All are welcome, including siblings and friends. The volume is turned down, the lights are turned up, you are allowed to bring in your own snacks and best of all the place is full of autism aware families who don't tut when people get up and wander around or vocalise what is going on. http://wsnas.blogspot.com/2010/04/wsnas-au...-screening.html

Good luck Michelle. Its short notice - but you do have the right to bring someone else with you. A grand parent or friend who might help?

We go to the run run by the West Suffolk NAS http://wsnas.blogspot.com/ Not sure when the next one is. The best thing is that no one stops an tuts when DS gets up to walk around or verbalises what is happening on screen. We love them.

Just thought I would share a recent experience. DS has been doing very well at our local school and is now in year 4. However this year his Headteacher and class teacher both left (they also shared the SENCO role). The new head has come in and has been a challenge to say the least. She removed most of his established procedures, for example, when he felt like a meltdown was coming he was able to go into the head's office and count the Tesco vouchers. The new head deemed this not acceptable as she might be having a meeting (that didn't worry the last head). After many months of grief (and with the help of some out reach services) he now has a 'dark den' he can go to. Anyway... I had a call from school to say DS was to excluded for 'Assault of a Teacher'. What transpired, and this is the official version of events, not just my take on it, is that he had some Lego in his hand and felt like another child was laughing at him so threw it at her. He missed and hit the teacher. He was excluded for 3 days. Now this was his first exclusion and we felt is was too harsh and took advice. We sought the opinions of the County Exclusion Officer (part of the local government) and the Head of the Governors. Our point being, there was no intent, no pre meditated action (the Lego was already in his hand) and it happened at a point of acute anxiety (they were due to go on a school trip the next day and no one at the school had done any preparatory work with him). I also spoke to friends who are SENCOs and learning support teachers. All said if it was an exclusion (which was debatable) it certainly should not be for 3 days. I also found the guidelines on this excellent website : http://www.ace-ed.org.uk/ It states the exclusion should be for the 'minimum time possible' for up to 1-3 days. The reason the head gave for the 3 days was 'it is always 3 days' and 'it will give him time to come to terms with his actions'. Both reasons are nonsense. The fixed period is not 'always' 3 days and a child with ASD will not be able to 'come to terms' with his actions. He had forgotten all about it an hour later. 3 days also allows for no escalation (if the first offense carries 3 days - what if he does it again?) We challenged the exclusion period through the Governors and have got the period reduced to 1 day and the head has added a explanatory note on his record admitting the lack of intent to 'Assault a Teacher'. This we thought a good outcome as we are going through the statement process at the moment and the exclusion, although not ideal on his record' will help him get provision in the future. I share this in the hope that others out there who think they are being given a rough ride can look for help. Contact your local County Exclusion Officer. Heads are scared of them. Contact the Governors, heads have to answer to them.

Hi Anyone thinking of home learning this might be of interest. http://www.icanyouknow.co.uk/

Hi It looks like you are doing all you can to help him do his homework by researching and spending time with him, but perhaps there needs to be a shift from homework being a negative experience to a positive one. Getting the school to punish him on your behalf will get you nowhere in the future and is just passing the buck. We have developed an sort of quasi-reward system that works for us. All our children have morning jobs and DS's job is to empty the dishwasher. This is something he doesn't enjoy but he knows he gets pocket money by way of a reward at the end of the week for 'helping' and 'trying hard' etc. If he has extra homework or spellings to do, we will trade his dishwasher job for spelling practice in the morning before school. He is also allowed 30 mins 'screen time' on school nights, ie internet games/PSP/Wii. If there is a bit of homework that needs doing and he does it without complaint, and does his best, he can gain extra screen time. He will often want to homework in order to generate screen time. The boundaries are also quite clear. No 'screen time' at all until the homework is completed - or at least attempted (there are some evenings his head is not in the right place and it becomes obvious that pushing him will just cause distress, so it is left for another day - which he and us agree to.)

There should be a school governor responsible for special needs - speak to them if you are unhappy with the Head Teacher.

Sounds a bit wrong, but we have a number of dog toys we use. (we don't have a dog...) No worries if they get chewed.

Lidl is good for random cheap items. Bit his and miss with what they have but we have picked up a few things like clockwork lights and cheap toys. One thing (which I can't remember where we got it) that is great for DS to calm down is an iPod pillow (A pillow that you plug your iPod into). That way he keeps his head on the pillow and has a break.

We will be starting a drop-in session for teens and adults on the autistic spectrum and for carers to meet each other on Tuesday 27th October at the Friends Meeting House, St John’s Street, Bury St Edmunds. Teenagers are welcome from 6.30 until 7.30 with a carer to accompany them and adults from 7.30 until 8.30. During the adults session there will be the opportunity to go to The Bushell pub if you wish to. You are welcome to drop in and say hello at any time. The first session will be getting used to the building and collecting ideas about what our members would like to do during future drop-in sessions. Refreshments will be available. If you have specific needs that you would like us to know about before the evening, please let us know by e-mail to westsuffolknas@google.com or by calling our branch mobile. For info visit our blog > http://wsnas.blogspot.com/

Fantastic work - really crisp. So are you a Nikon or a Canon?

There will be a Autism Friendly Cinema Screening in Bury St. Edmunds Suffolk nvite extended family and friends to come along too...we are hosting our first Autistic Friendly cinema screening at the Hollywood Cinema in Bury St Edmunds and we want a really full cinema! It will cost £3.00 each to come in. The lights will be left on low, the volume will be reduced, you are welcome to get up and move about if you need to and those with restricted diets can bring their own preferred snacks and drinks. Pop-corn, snacks, ice-creams and drinks will be available from the kiosk as usual. Date: Saturday, August 22, 2009 Time: 10:00am - 12:00pm Location: Hollywood Cinema Street: Hatter Street City/Town: Bury St Edmunds

We have an iPod pillow which means DS at least stays still long enough to try and sleep.

Hi All Here are some links I hope might be of use to those in the Suffolk region The West Suffolk branch has now been launched and we have had a Gala Reception to introduce the branch to the great and good of the west Suffolk region, including the Mayor, Chief of Police and various heads of great organisations all of which made pledges to help those with, or those caring for, people with ASDs. Here is a link to the blog - which has some nice pictures of the events an will have details of all our further events West Suffolk branch of the NAS Blog Here is a link to our Facebook group which will also have details of the events, but will also allow you to contact other members. http://www.facebook.com/group.php?gid=98967015795

Hope to see you there Steve If you need one of the half price entry leaflets - it can be downloaded from here: http://www.crooksdesign.co.uk/kiteflyer/

DS has nothing in his bedroom apart from books which he can help himself to and read quietly. Having a TV and toys is just too much stimulation. He is older now and we have bought him an iPod pillow so he can listen to music quietly. He shares with his brother and things on the whole are OK. Good luck!

Hi There is a new branch of the West Suffolk NAS starting up for all those in this part of sunny Suffolk. We are having a launch at the Rougham Kite Festival (pardon the pun..). 16th May at Rougham Air Field 2pm is when all the ASD kids/young adults will be flying rainbow coloured kites in the main arena with the help of the Suffolk Kite Flyers - who have been quite fantastic in their help and support I might add. More info can be found here: http://www.wsnas.co.uk Website is a not finished yet, but has the main info up.

Ethan used to struggle during group activities - and still struggles during assembly. For him it is just an issue of sensory overload. Too many faces, too much expectation about not shouting out, sitting still etc, too much expectation about having to be in one place for so long. The more anxious he gets, the more he wants to pace around and find a quite space. If we have had a special assembly, or class play etc it will drain him mentally and he will just shut down after school on the sofa. He is 7 so its no wonder you have problems with an under 4.