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 AUTISM awareness VOLUNTARY support LOCAL families 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.
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