It is important that we all contribute to the UK Disability Survey if we possibly can. It seeks the views of disabled people, carers, parents or as someone with an interest in disability issues.
“https://disabilityunit.citizenspace.com/cabinet-office/ukdisabilitysurvey/”
| Felicity Ellacombe writes ‘Lucinda and Gilbert are running for Fred in the Royal Parks Half Marathon on the 11th April. This will be the first fundraising event we have been able to hold for a year, due to Covid. Both of them will be running in their home areas instead of through the Parks. If you would like to support them here are the links. https://uk.virginmoneygiving.com/LucindaMarsdenBorer https://www.justgiving.com/fundraising/Gilbert-J-Ellacombe Our families have been having a tough time during the pandemic and sadly we have not been able to help them very much. Lucinda has described the problems very clearly in one of her recent posts.’ “Many autistic children with complex needs keep their lives rigid and routine-led to help them feel in control of a world they do not understand. Families have suffered greatly during the pandemic because their autistic children/young people, often with very little speech and learning disabilities, do not understand why they cannot stick to the routines that help them feel safe. If you have autism with complex needs – and will never understand what a virus is – you think it’s your mum, dad or caregiver stopping you doing all your usual activities. Can you imagine the impact of this on parents (the majority of them single) for months on end trying to cope with their children’s pain and lack of understanding every single day alone with no break – often sleep deprived? Many neurotypical people will have mental health issues due to Covid, but at least they know why it’s happening and what a virus is. I will be thinking of a particular person as I run/walk/stagger. Many of you may have read about the despair of a friend Olga Voronina/Freeman who loved her autistic son with complex needs SO dearly, but was taken to the brink during Covid. I will be thinking of Olga, my Fred and all of the families who’ve suffered so much during Covid – and continue to do so. Every donation goes straight to the families via The Fred Foundation and nothing is swallowed up by admin costs. Not many charities can say that.” x |
Our 2019 accounts are now available below. You can also find them and more details on the Charity Commission web site.
You may be one of the people in isolation having to use Amazon to get things you need. It is annoying when you would rather support smaller companies. However, there is a way you can get Amazon to stump up some cash for your favourite charity. Amazon have come over all charitable and started something called Smile Amazon. Here is how it works.When you want to buy something via Amazon instead of going to their normal page amazon.co.uk – go to https://smile.amazon.co.uk or use the ink belowChoose your charity – The Fred Foundation – just type in that name and you are set up.
You shop as normal but Amazon will donate 0.5% of the net purchase price (excluding VAT, returns and shipping fees) of your eligible purchases, to the charity.You can choose to download a preference which will always open up Smile Amazon. This helps you to remember to use the correct page. It takes 2 minutes to set up and if you remember to shop this way we will get some money. We appreciate it is a tiny amount but if all our supporters do it we may get a significant amount, and we are such a small charity that any money is useful!It is about time Amazon gave something away so please do remember to switch.The Fred Foundation page on Smile Amazon
In light of all that’s going on around the world right now, a message to all of the parents and caregivers out there who have autistic children (or children with other special needs)…I see you
To all of you worrying about what to do tomorrow with no school, knowing how unsettling this complete break from routine can be, with no idea of when it might change again. Who know that their child just isn’t going to understand, and that the next few weeks and months are going to be full of meltdowns – I see you
To all of you whose kids schools are open tomorrow, who are being judged by others trying to figure out why your child gets to go to school and their’s doesn’t. Who are agonising over whether to send them, scared of the possible health risks, but trying to balance it with the health risks of being at home for an extended period – I see you
To all of you desperately searching online and in the shops for the few particular foods that your child eats, or trying to find the right nappies for your teenager, and are panicking as the shelves are empty – I see you
To all of you trying to figure out how you’re going to get your child to wash their hands as often as you’re being advised to, but whose child’s sensory system makes it incredibly difficult – I see you
To all of you worrying about what happens if your child gets the Coronavirus, knowing they won’t understand, and refuse to take any medicine. Who are scared of what might happen if they have to take them to hospital, and maybe even getting forcibly separated – I see you
To all of you who are petrified of what might happen if you catch it, if you get ill, if you have to isolate or end up in hospital, or even worse, die. Desperately worrying about who will look after your children and how they would cope without you – I see you.
To all of you trying to figure out how you get through the next few months with no school, no respite, and being a carer 24/7. Worried about the impact this time might have on your your kid’s mental and physical health, and your own mental health – I see you.
Know that you’re not alone. There’s thousands of families just like yours all over the world having these exact same thoughts.
Realising that, reaching out and speaking to others living similar lives will make this scary period that little bit easier. You’re not alone.
You’re stronger than you know and we’ll get through this… I see you ❤️
By Melissa Collins-Porter
For this year’s autism awareness month, I’d like to honor and celebrate the siblings. They love their brothers or sisters fiercely, yet quietly endure being dragged to therapists’ offices and doctor appointments and get used to only Mom or Dad coming to their events because one has to stay with their sibling. They often are forced to concentrate on homework amidst what reasonable people would call total chaos. From a young age, they have an awareness that at some point, they will likely become caregivers to their sibling. They may feel guilt about the fullness of their own lives (friends, sports, activities, travel, independence, college) in contrast to that of their sibling. They may feel pressure to be “the quiet one,” “the good one,” “the easy one.” They have become used to cancelled plans, destroyed or lost personal items, and giving up their own preferences to appease their brother or sister. They tirelessly stand up for their siblings when people ask questions, stare, or use “autistic” as a pejorative at school. Underestimate them at your peril, because they grow up to be extraordinary adults and you want them on your side. This one right here is my hero.
The writer is a filmmaker who lives in Southern California.
amazonsmile_logo._CB469832382_As with most charities we struggle for money but I have found an easy way for you donate without donating!Amazon have come over all charitable and started something called Smile Amazon. Here is how it works.When you want to buy something via Amazon instead of going to their normal page amazon.co.uk – go to https://smile.amazon.co.uk or use the ink belowChoose your charity – The Fred Foundation – just type in that nameAnd you are set up.
You shop just as normal but Amazon will donate 0.5% of the net purchase price (excluding VAT, returns and shipping fees) of your eligible purchases, to the charity.You can choose to download a preference which will always open up Smile Amazon.It takes 2 minutes to set up and if you remember to shop this way we will get some money. We appreciate it is a tiny amount but if all our supporters do it we may get a significant amount, and we are such a small charity that any money is useful!It is about time Amazon gave something away so please do remember to switch.The Fred Foundation page on Smile Amazon
