Tuesday 24 October 2017

**Fantastic Night Out,Frustrating News and a Scan Date***

Spirit FM Local Hero's Awards

This was such an amazing night out, we were made to feel special right from the very moment that we arrived.
It was a real pleasure to meet Danny ,Wife and team from Knights fencing,  they made perfect companions for the night .
I almost felt like we were at the Oscar's everyone was so dressed up and looked amazing . Even Stuart and Simon scrubbed up pretty well.


We enjoyed a 3 course meal followed by entertainment courtesy of Martine McCuthon.



Then it was onto the awards part of the night ,there were so many amazing and inspirational  people present, it restores your faith in humanity . We always hear such awful things on the news , it was lovely for a change to hear positive news about our community's unsung hero's.  I do struggle to feel that way about myslef though.

It was especially lovely to meet the Wiggingtons,the family that won the Bravery award. Tyler's Trust had not long done a box for little Daisy and family, it felt really special meeting them and it was quite emotional .


My award for Parent of the Year was the last one to be presented. As many of you know I am more than happy for Tyler to be in the spot light rather than me . By the time it came to my award I was a tad nervous to say the least .

As Tyler had made a joint nomination with my sister Karen and family friend Lisa he came up with me. This may not sound much but in view of how difficult this was for him ,it meant the world to me. He was using a wheelchair for most of the night , as we walked up everyone could see just how much effort was involved and everyone started to stand up and clap . Tyler was his normal cheeky self and was giving out little waves to everyone .

It was really emotional and that was before I heard the video nomination . Tyler's words were so heartfelt and they meant the world to me, better than any present . When Karen's and Lisa's words were added lets just say I didn't have any mascara left!!!
A huge thank you to Sally,Simon,Stuart,India, Robyn and everyone at Spirit who worked so hard on this . Its a night that I will never forget.


It was incredibly special to receive this award, although I am sure that any parent in my position would do the same . It also helps to highlight some  of the    issues that families in our position face.
The evening was even more special as Craig and I celebrated our 10th wedding anniversary .


Not too much difference ! I cant believe that we are at 10 years , Craig has been my rock through everything, so here's to the next 10 .
Courtesy of Bognor Motors we had won a camper van weekend , so straight after the awards we took off for friends in that . A truly special weekend all round .


Back to Reality

I had managed to switch off for the weekend and found it very hard coming back to reality.


We have encountered a further difficulty in getting Tyler the help he needs . This time with education . The situation is very complicated but basically Tyler is to have a college education in the 6th form of his old school.

This has been in the planning for months and months and we have had endless meetings . Unfortunately on his first day (for 2 years) the teacher turned him away .

Basically she felt that there had to be a TA in the room at all times. Tyler has an Education Health Care Plan which protects education until a young person is 25. This is how funding is obtained for extra support such as a Teaching Assistant. However for the plan to kick in a young person must be well enough to attend a full time course.

Tyler is only able to attend very part time, so the plan cant kick in , so the support cant be obtained, the result being no education for Tyler.

At a local level everyone has been doing everything that they can but they have hit this red tape and cant seem to find a way round it . Meanwhile yet again the weeks are ticking past .


I am going to be raising this issue with as many people as I possibly can. This wont just be affecting Tyler and it  is an issue that needs addressing desperately. If it isn't the system is condemning a whole group of young people to a life on benefit.

At present we are on the hunt for a very part time TA who may be able to help us out. I must mention Helen at the council though who is helping to save my sanity over this .

If anyone can help me raise awareness of this issue please do get in touch . It seems so unfair to me that there is obstacle after obstacle in getting even a basic education . Tyler had already accepted that he would need to change course as the media had changed from module based to exams. It really does make me so angry .



Onto more pleasant things ...........


Together For Tyler

We were thrilled to go over to the Appledram centre last week , where we collected sponsorship money from the team who had raised over £700.! It was organised by the lovely Lillian who had herself had a brain tumour at the age of 2, thanks guys.

Up and Coming Event s

Family Fun Day Sat 28th Oct Barnham Community Hall.

Please do come along and join us for what promises to be an amazing day. There is football,food,entertainment , all sorts of things to keep you busy.

You could also come along to give Tony a cheer who will be best part through his 10 x 10k races in 10 days .


Thank you to Julie who has worked tirelessly to organise this .

Halloween Event Windmill Monday 30th October.

Come along and join us for Halloween fun , fancy dress comp for the kids,treasure hunt,raffle,tombola ,refreshments. 

See Stuart McGinley from Spirit and 

Stepehen form the Observor 

go head to head on eating a cake on a string .      


Moving into November

Wed 29th Spirit FM Quiz night Bognor Football FC

Thur 30th  A quiz with a difference , come to find out more .

It would be lovely to see you at one or all of these events.

With all this going on I really really hope that we can instruct the surveyor before Christmas , but we are not there yet , so please help if you can .
It is the kindness and support of our local community that keeps us going when things get tough.


Lunch Date with Ben .

I had arranged to meet Ben in Portsmouth for lunch. I was absolutely amazed on the Sunday in question when he just walked into the lounge! I didn't realise just how much I was missing him until then.
He is throwing himself into his studies and this year he is able to enjoy the whole uni experience.  
We had a lovely meal at the Harvester and I dropped him back to his house share . Hopefully we can repeat the experience soon.

Tyler's next scan date is through, which I need say no more about . Hopefully it will be good news for Christmas.

Please do get in touch with any thoughts,suggestions etc 

Jan 
Avery proud mum

janice.ellis2@btinternet.com



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