So about 3 years ago now I wrote a blog post called “How it all began..” . As we approach our 5th birthday I thought it was time to revisit that and bring it up to date.
Many of our members have been there right from the very start but as we have grown so much in the last couple of years, there are so many new families who regularly ask questions about how we started so hopefully this will help.
In early 2011, my son had had his Autism diagnosis a few months, and I felt really lost and alone. I didn't know any other parents with a child on the spectrum, the mainstream school situation we were in at that time was dreadful and friends tried their best, but, just didn't understand. Not being able to find what I needed at the time, in terms of support that was accessible to me, I turned to Facebook. I have always been a Facebook girl, so one afternoon I decided if I couldn't find what I needed I would do it myself. So I started a Facebook group.
I needed something that I could access when I had time, and was convenient, I
remember thinking there has to be a few parents in the Ashford area like me. Well that was an understatement! Since his initial diagnosis of Autism in 2011 my Son has since been diagnosed with ADHD, Epilepsy, Hyper Mobility and Sensory Processing Disorder.
The group started small, but steadily grew. It was while I was pregnant with my second child, that those on group asked about regular face to face meet up’s. So that was what I set about doing, not as easy as you would first think, as I was told a few times an ASD specific group wasn't needed in Ashford and it should be pan disability. Well I disagreed and it certainly wasn't true from the members of the group at that time, and still isn't true today. Eventually I met with the Children's Centre in Ashford, they were amazing, and without them we wouldn't of got started. So with a venue sorted at The Willow Centre, our monthly support group meetings started in June 2012. After a suggestion from a friend that a website might be a good idea, I spent the summer putting one together myself, that was launched in the September. I am always quietly proud of the website, not because it's the best in the world, but because at the time it was something I thought I couldn't do.
For the first year the group ran entirely out of my own pocket, the costs weren't high but they were starting to add up. So just before Christmas of 2012 we began
fundraising for the first time, and were able to have a small kitty to start the new year.
ASD Ashford has always been and to date still is unfunded. All that we do we do by the fundraising efforts of our wonderful members and local community. From a Firewalk to Cycle Rides and Fetes.
As group grew it became clear we needed a base, and I needed to reclaim my bedroom. We eventually moved into a small office at International, but after just 6 months we faced eviction due to it being sold. Ashford Borough Council assisted ourselves and the other charities on that floor to relocate. We have a lovely little office now in County Square Shopping Centre, this has enabled us since January 2015 to offer a drop in on a Tuesday, people can stop off for some advice and info, use the resources or to just have a cuppa. On a Thursday we offer our 1-1 appointments, to help with things like diagnosis, form filling, assistance with EHCP’s to name but a few. As for the other days I am often supporting at appointments/assessments, school meetings, organising group meetings or running training days. Although our Facebook group is still very much at the heart of the group, we are now able to offer much more to those families and Carers in our community.
Our training days run regularly throughout the year on various Autism related topics. Just over 2 years ago by a serendipitous moment I was introduced to Austin Hughes by one of our mums, I remember her saying you have talk to Austin! Well I did and a few years on I still am. Austin delivers all our training days to parents and professionals, last year we trained just over 500 people. I am delighted to say that in 2014 he became our Patron too.
Advice and support is offered through many forms, social media, email, it's also not a 9 till 5 Monday – Friday service, that's something I feel passionate about.
Some people assume there's several people running ASD Ashford, and that's a natural assumption.
Although I am very blessed in the last year to have a few good people around me who I am able to rely on to help especially with organising events and group meetings, as well as being able to ask their opinions on things, day to day it is just me.
We have come a long way in our nearly 5 years, thank you to everyone who has supported us this far.
Hi - my name's Rose, I have 3 sons and 1 of them is autistic.
Family life living with autism can be very hard and there is very little help for families who live leading very challenging lives,
My son has recently leant to ride a bike- because of his additional needs we NEVER in a million years thought that he would actually learn to cycle- but - with the help of Occupational Therapy he has which we are all thrilled about.
Yesterday he announced from NOWHERE that he would like to do a bike ride for charity to raise money for autism......
At which point I knew I had to arrange for this to happen-
now- I'm prepared to cycle this on my own and donate to the group and it will have been worth while but what would be absolutely amazing is if we can get the community involved and really make this happen and actually raise enough money to keep this amazing charity comfortable for a short while.
It is only funded by donation and the wonderful people are all voluntary and literally work their guts out to help others.
So - I thought seeing as I’m suggesting you come and ride your bike or walk with us and donate your hard earned money and use your precious family time I... thought I ought to explain a little more about the community group that I’m asking for some valued donation for.
Its called ASD Ashford Support Group
ASD standing for Autistic Spectrum Disorder.
As I'm sure the majority of you know my son, Fynn was diagnosed in 2011 with Asperger’s Syndrome.
This was a bitter pill to swallow despite knowing that his development wasn’t that of a neurotypical child but came as a great relief as it was finally being recognised that my child was going to need a lot of extra help as he grew and developed, no one could tell me HOW that development would progress, if at all.
Scary times if I’m honest and we are really still in the very thick of it - No cast iron guarantees that he will live independently in the future, or work, no sure answers how he will progress academically or on a social level, NO LIFETIME REMISSION from autism, that’s how you’re made- end of story.
Anyhow- I digress …Post diagnosis we were sent packing with a couple of leaflets with vague information, and – that was it….. no further plans.
We managed for a while as when Fynn was younger it was less apparent that he had difficulties but as he has got older the gap between himself and his peers has widened and the un-knowing public eye doesn’t tolerate a tall 10 year old throwing a huge temper tantrum in public.
Without putting too finer point on it , life has- at times been pretty much unbearable and cards laid bare has almost broken us.
However, on a much more positive note– with the help and support from Fynn's brilliant school and having stumbled across the community support group ASD Ashford we have made and continue to make progress.
Sam Leaning who runs the Ashford ASD has a son on the spectrum and therefore has her own huge personal struggles running her family life (I hope you don’t mind me saying that Sam) however she works tirelessly VOLUNTARILY to help other local families with all sorts of issues.
Of course every family has so many differing needs but the team at ASD Ashford know where to go to begin starting to make others family life that little bit more manageable- often MUCH MUCH more manageable.
Some of the help they offer is to point parents in the right direction for beginning the long and laborious task of getting a diagnosis, they offer advice that is otherwise nigh on IMPOSSIBLE to gain- guiding parents through enough red tape to tape up the empire state building 3 times over –
They run informative and educational training programmes for parents and teaching staff to raise awareness run by the best possible person who EVERYONE should meet – the 1 and only Austin Hughes who is a patron of the group.
They have an online Facebook group that parents are able to come together and support each other and regroup whether that be for advice or just to let off steam, there’s always someone that can offer an ear and there have been some tragic cases where children have been massively let down by our system and not received anywhere near the adequate care they deserve.
There is a MINISCULE support network for mental health care in this country –
I am in total admiration of this community support group who works for no personal or commercial financial gain.
They are funded purely by donations and fund raising and without the most valuable support that you’re making through coming along on the bike ride and by wonderful donation will struggle to continue with the basic expenses that they have to cover which is office space and basic running needs.
So without further a do Ill shut up but I just felt I needed to explain a little more for people who haven’t really understood what the support group is or how vital it is to so many local people.
The key words I think are
Wow- once I started writing this I didn’t realise it would flow out like that, If you’re still with me thank you for reading and THANK YOU from every bone for hopefully coming along on the 1st November and offering your hard earned money and time to helping raise some pennies for a great cause.
Many Thanks, Rose and Fynn xx
You can donate to sponsor Fynn here at his GoFundMe page.
You can support and the Facebook event here.
Life was pretty much normal
until one morning Jai was 4 years old eating breakfast before nursery Eiley was a baby. As I sat across the table I looked up to talk to Jai, instantly I knew what I was seeing. I had seen 100's of seizures at work and knew he was in a seizure. Our world didn't crumble nor fall apart not too sure why maybe the fact between us we had over 20 years’ experience in the care sector. We set about getting a diagnosis and supporting Jai we were given an amazing consultant who still supports us 5 years later. Jai and Eiley grew up surrounded by epilepsy
and for Eiley and then Logan born when Jai was 6 epilepsy remained part of life and accepted it. Jai even wrote a piece of work about his epilepsy and became proud of having it wearing dog tags.
Then epilepsy challenged us all with regular seizures blue lights into hospital, extended seizures, things became scary for everyone with a 5 day stay in hospital after a are rare reaction to his medication his epilepsy seemed to get control of all of us.Jai became fearful and anxious at school surrounding his epilepsy I decided to give up work as he was in and out of A&E and I was called to school at least 3 times a week I had to be there for him and also his siblings who were witnessing more than any child should. Eiley decided from a young age that she wanted to become a Doctor or nurse to help Jai and make him better. She is a great support for Jai and talks to him when in a seizure and calls for us if we are in another room. Jai's epilepsy has evolved he used to have absence seizures now he has many more, tonic seizures when unwell, complex partial, focal, absence and more recently he has started having nocturnal seizures. As a Mum this is the scariest we sorted out an anti-suffocation pillow to reduce the risks of SUDEP (Sudden Unexpected Death in Epilepsy) we didn't sleep properly each night for ages worried about him. I have to say epilepsy effects all of us when out on family trips, holidays, meals out we watch for his triggers (which are vast) to reduce the risk of a seizure and often when he has a seizure and we have to stop what we are doing Eiley and Logan get upset understandably. That’s where Granny comes into place she comes out with us on trips days and we even drag her on holiday with us! I made this promise to Jai when he was young "Nothing will stand in your way in life, if we need to I will hold your hand and smash through things in your path"
The scariest moment of our lives!
Jai was almost 9 years old and was in a swimming lesson everyone knew he was epileptic and the life guards were always aware where he was. His swimming teacher was amazing and watched him
closely, as he swam to the edge of the pool I saw him go under then saw 2 swimming teachers dive in the water I have never ran so fast in my life to get to him. The "CODE BLUE" alarm was set off and the pool cleared when I got to the pool his teacher had his head above the water and life guards were in the water
trying to support him, as I ran past I saw the look on his sister Eiley's face the fear will haunt me forever. They dragged him from the pool as we were watched by terrified children and parents Jai took forever to come round that’s what it felt like actually it was only a few minutes but time stood still. I scooped him up as soon as I could and carried him to the first aid room still to this day I am not sure how I held his weight I was like jelly shaking and he was so heavy. He was ok and recovered well was checked over and we were told about dry drowning, thanks to his teacher and staff for their quick response’s. While getting him dressed it dawned on me Eiley she had witnessed it all my god the poor thing must be terrified I stood and watched her finish her lesson giving her thumbs up whenever she looked me. This is now one of the proudest
moments of my life. The swimming teacher told me while all this was happening Eiley remained calm and a boy much older than her had said to her "That boy is dying" instead of panicking she turned to him and said in a calm voice "Don't be so silly he is having a seizure he has epilepsy he's my brother" she went on to
explain a few things to him about epilepsy. She was 5 at the time we had always
been honest with her and told her not to fear epilepsy, it had worked. She said after the only thing she was scared of was the code blue noise and the children screaming. Jai had some time off swimming and true to his word of not letting epilepsy stop him he returned to his beloved swimming. He was calm and comfortable me I am still a nervous wreck I watch him each week and with any whiff he may have a seizure I keep him out of the pool. He has had another seizure since this but his teacher saw the early signs and got him out of the pool onto dry side. We could not thank the staff enough they saved our sons life!
People have asked us as parents why we allow him to swim as it is a risk! Jai is 9 years old can make
some decisions for himself he has ASD and struggles with many things in his life swimming is his comfortable place and he is amazing at it. We call epilepsy the E MONSTER we don't want it to control Jai nor our lives. We gave him the choice to not return and he said "Why should I?" that made me realized yes why should he be stopped from doing anything in life as long as all risks are assessed and he wants to do it who am I to stand in his way?
Jai is an unbelievable boy he has courage and strength, he will have regular seizures at school have a rest
and get back on. We are a positive family and epilepsy has taken its toll on us over the years but we always find a light at the end of the tunnel, we have to if Jai can we certainly can. He says the bonus of having epilepsy he gets to have more time off school and when he has blood tests he gets a toy! On national
Epilepsy Day he will be challenged to his limits. One main trigger is anxiety we need to travel early in the morning to Kings College in London on a busy train surrounded by people he will find it hard and due to his ASD will be anxious it will take every piece of him to do this trip and we know he will be exhausted.
Something simple as a trip to London to most children would be exciting and fun. It’s taken weeks of planning and preparation behind the scenes not only due to his ASD but because the anxiety WILL cause a seizure. He is feeling good at the moment about it but is very aware of his epilepsy and what OTHERS think.
Epilepsy Nursing Team Kent
Here at ASD Ashford it has been a busy week and we wanted to share our exciting news with everyone.
Nearly 2 years ago now Austin Hughes, came down and delivered some training for ASD Ashford parents.
Since then he has been coming down regularly to train and support parents from the group.
He has become some what of a household name, and been taken to the hearts of many of our families.
It is with great delight that today I can officially introduce Austin as our new Patron.
To coincide with this exciting day we took the opportunity to reveal our new logo.....and we couldn't let any of this pass by without an excuse for cake!
Well it's that time of year again, where did the last 12 months go? It's been a busy month here at ASD Ashford, so thought I would do a round up of the highlights.
On the 4th December ASD Ashford officially opened it' little office. This will act as a base for all our resources, there is a computer and printer that can be used as well. The office will be open twice a week for drop in's, Tuesdays and Thursdays, 10 till 2pm. We also have a kettle for those that just want to stop by for a cuppa and a chat! At our opening ASDA came along and presented us with a cheque for £100 after we collected the most green tokens in our box at ASDA Ashford. Thank you to everyone who put them in for us!
On the 10th December I was very honoured to be asked to attend The House of Commons by Anna Kennedy Online.
It was a wonderful day, and brilliant to watch Anna and her team present the findings of their survey regarding Autism Diagnosis, which received 2000 responses in just over 4 weeks! To read more about it and to see the survey results follow the link. Everyone at Anna Kennedy works tirelessly to raise Autism Awareness, and make things better for us parents, so a big thank you from us at ASD Ashford for all your hard work. If you would like to help further you can do so by signing and sharing the latest campaign.
The office will be open over Christmas, the office will be open on the 27th December, 30th December and the 3rd January 10 till 1pm. All contact details are on our contact
So all that's left to do is wish you all a Happy Christmas and all the best for 2014!
Thank you for all you support,
Back at the beginning of 2011,I first met a lady I now call a friend.
This is the first thing of hers I read, and I remember thinking then "I like this woman already!". The other day she laughed when I said I still had her original blog post printed off in a folder of very early ASD Ashford stuff.
The sad thing is, that as you read it back now, you can't help but think what's changed....
Why is it that when you think you have it all under control, it all goes pear shaped?
Kindly shared with permission from Debs Asplands blog Choas in Kent.http://chaosinkent.com
Our box is filling up nicely!
We have a few days left, if your in ASDA, to pop your tokens in.
Thank you to everyone who has been voting for us! :-)
We will be holding our next group meeting on Friday 25th October at the Willow Centre on Brookfield Road, Ashford.
10.30 till 12.30.
If you haven't been before, be lovely to see you. Remember we support families who are still going through the diagnosis process as well as those with an official diagnosis.
Pop along if you can,
Well after weeks of hard work fundraising by the Beaver Inn and all its customers, and the children counting down the days, and hours, the day was finally here, we were off to Legoland!!
What an amazing day it was! The sun shone and the traffic was kind.
All the children were so amazing, and over came many challenges to enjoy the day, but armed with symbols and brilliant T.Shirts from Lazy Cow Printing they coped brilliantly!
One of the big hits of the day was definitely the coach, or more specifically driver Pete, Bovy Tours did a wonderful job kindly providing the coach for the trip, and Pete has made a lasting impression on the children, if he ever needs an extra job he could do a good trade babysitting! Already I have had requests for him to go round to play and one even wanted him to take us on another trip....to Vegas!
But on a serious note, there are so many people that helped make the day happen, firstly to the customers at The Beaver Inn who all donated there hard earned cash. Premier Foods for their support. Sharon Harris and her daughter for the lovely candy floss that the children enjoyed very much! Martin Riccard for feeding everyone, and to our photographer for the day Roberta at Red Hot Chilli.
and last but not least...too all the families and children at ASD Ashford who continue to inspire me everyday.