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THANKS SO MUCH GUYS #Fredland50….whilst everyone having a nice lazy bank holiday weekend sipping rose etc…….

0 Comments | This entry was posted on May 29 2016

They did it!

“105,456 steps. 53.87 miles. 21 hours 39 mins. Thanks for all the support and donations @SMG_London #Fredland50”
TWITTER.COM|BY TOM MACKENZIE

Come on guys – Doing it again for The Fred #Fredland50

0 Comments | This entry was posted on May 27 2016

As you can probably tell from this photo these guys are totally amazing and are now on the train to The Lakes They’ve raised £2,000 already on this escapade, and well in excess of £5,000 on their last three fundraisers!‪#‎Fredland50‬.

Renuke Manodha Samarasinghe's photo.
Renuke Manodha Samarasinghe with Tom Crichton and 3 others.

4 hrs · London ·

Bags packed, bellies full, legs prepped (not), T-Mack’s game face on, Lakeland50 we are comin’ for you! ‪#‎Fredland50‬ find out about our challenge here – http://bit.ly/Fredland50

Lakeland 50

0 Comments | This entry was posted on May 27 2016

The team from Mediavest have decided to complete another challenge for The Fred Foundation. last year they staggered through the 3 Peaks Challenge. Here is what they have to say….

“So… after about 40 miles of walking and 3000m of ascent last year coupled with sleep deprivation, body’s breaking down and the Welsh weather (see it all here: https://vimeo.com/139697919) it would be foolish to attempt a seemingly longer, physically more demanding challenge this year.

But that is exactly what we are doing. Introducing The Lakeland 50.

50 miles. 3100m of ascent. 24 hours. All in the picturesque setting of the Lake District. Starting at Dalemain House and walking 50 miles to Coniston, it’s the UK’s premier ultra trail challenge and has been described as “one of the greatest ultra running and walking challenges in Europe” so it should be a breeze.

If signal permits we’ll be keeping everyone updated on P Dog moaning about his weak muscles, Sam’s shit chat and Tom Crichton’s sleep deprived animal spotting with #Fredland50.

Any donation, no matter the amount, will make a difference. “Please donate here: https://www.justgiving.com/lakeland-50-shades-of-pain

They are on the train up there right now. Good luck  Tom M, Tom C, Sam, Punesh, Renuke & Rob.

Thank you

0 Comments | This entry was posted on May 01 2016

Thank you, thank you for all your support for Lucinda running the Marathon and of course especial thanks to Lucinda.
As the money was coming in I was going through our waiting list and offering families help. Some of these families had been waiting a year! Here are a few of their reactions and thanks to you.

First of all we are overwhelmed and overjoyed in equal measure that The Fred Foundation are able to help us.

Your email has been like a Godsend and at our lowest point miraculously funding could be available to carry us through this difficult time.
So for that we sincerely thank you. Your timing could not have been better.

The people and the organisations who have helped during this time should be aware that their contribution has made a significant difference and Sam would not be the boy he is today without their help.

Oh my God Felicity, can’t believe your email, don’t know how to thank you…it’s amazing!!!!
I was so busy last couple of days, just now seen your email, wow speechless. Thank you ever so much.
God Bless…

FANTASTIC news thank you so much. :-)

I had to fight for my son. He needs ABA. Two years of fighting for ABA. Then without funds I literally felt as though I was in a battle and I had no sword. After all ABA tribunals are evidence based. As I almost gave up,cornered with no options. The Fred Foundation gave me £2000. I heard “you must fight on! do not give up”.
A million thank you’s is not enough. I am a fighter and I could not do this with out your help.
Dear Felcity!!!! omg!!!

I am in the process of lodging my appeal and I run out of funds!! You really have made my day!!! Honestly you have no idea what I am going through!!!

Thank you so much!!
Please keep thinking of The Fred Foundation

https://www.justgiving.com/fredfoundation

Thank you

Cheer her on!

0 Comments | This entry was posted on Apr 23 2016

If you are attending the Marathon in London tomorrow, please cheer on Lucinda if you see her. She is bib number 52983. You can download an app to see where she is . Of course you can still donate to support her as well via the Virgin Money site.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=fredfoundation

We might pass the £15,000 mark as we are very close!! Thank you so much if you have already donated. Over the coming weeks I will be posting the comments of the families who directly benefited from your donations, so ‘Follow’ our site and you will alerted to the posts.

Marathon news -help us reach £10,000

0 Comments | This entry was posted on Apr 18 2016

LONDON MARATHON TRAINING SO FAR– BY FRED’S MUM http://uk.virginmoneygiving.com/fredfoundation

I did my last longest run a couple of weeks ago early on a Sunday morning. Moving silently and carefully around the kitchen, getting ready to go I heard a voice behind me, “what’s happening what’s happening?” It was my autistic son Fred whom my creeping around had still woken up.

His terrified faced, eyes welling with tears, all 6ft 3 of him completely naked, made my heart break anew at his vulnerability. I guided him back to his bedroom saying, “Daddy’s in bed, twins are sleeping, Mummy’s going for a run don’t worry darling”.

He got back into bed and then said even more desperately, “What’s happening, what’s happening? Mummy say!.” I repeated it back exactly as I had said it before. “What’s happening, what’s happening?” only came again.

As I repeated back exactly the same explanation a number of times, now close to tears myself, I thought I can’t do this 22 miles today. I’m not in the right frame of mind. Then, he seemed to quieten and lie back and I went.

I began to run, turning to look back at his bedroom window. His pale face was watching me through half-opened curtains and I waved. He didn’t draw the curtain back across until I had gone. I doubled back to check. The curtains were closed.

Now you might think oh well he just didn’t want her to go out like any young child.

My son is 17 and his autism means he just doesn’t understand the world. If things don’t happen in exactly the way he expects them to (and mainly you’re guessing at that all the time because he can’t tell you) then he feels utterly petrified at the uncertainty. Still a little scared boy, a boy who makes routines out of routines.

I know all of this, all of the time, but, seeing his pain doesn’t get any easier. God knows who will care for him after I’m gone is a constant in my head and today his naked vulnerability gets to me more than other days.

I turned my music up very loud.

Later…..back at home thinking ‘how the hell do I run 26 miles on the day after that 22 nearly killed me’, this note pinged up on my donation page.

8.04.16 GOOD LUCK WITH THE RUN AND THANK YOU FRED FOUNDATION FOR ALL THAT YOU HAVE DONE FOR OUR FAMILY WITHOUT YOU JOEL WOULDN’T BE IN THE SCHOOL AND GETTING THE PROVISION HE HAS BENEFITED FROM SO MUCH.

Better do it then.

http://uk.virginmoneygiving.com/fredfoundation

Why support us?

0 Comments | This entry was posted on Apr 17 2016

I am sure you get many requests for money from Charities far and wide. Why should you support us? Here is one letter that I received from a mother we recently gave a grant to.

I got an email on a Sunday morning as I calculated my personal funds. As a single parent with three young children one with autism.
I found ABA by doing research, out of desperation. Who could help my child?! My GP had no answers, the doctors who diagnosed him had no answers. All they could talk about was speech delay and he didn’t even get one to one speech therapy. My sons behaviour had turned our lives upside down. A simple visit outdoors or visiting friends became impossible. I had no one to turn to. I could not afford ABA. However we needed it. It answered all the questions I had. The consultant became my saviour. As a mother I almost became depressed. My son would have two long meltdowns. I had no idea what to do. With ABA we slowly got a life again. ABA is and was vital for our family. I had to take funds from my other children, no days out, no birthday parties and clothes all from charity shops. I also reached a point where I could no longer afford ABA tutors. I put my young daughter with a childminder £6 per hour and ABA tutors start from £10 per hour and I started tutoring my son. The pressure became too much.
I had to fight for my son. He needs ABA. Two years of fighting for ABA. Then without funds I literally felt as though I was in a battle and I had no sword. After all ABA tribunals are evidence based. As I almost gave up,cornered with no options. The Fred Foundation gave me £2000. I heard “you must fight on! do not give up”.
A million thank you’s is not enough. I am a fighter and I could not do this with out your help.
Thank you for believing in us, my son is not disabled he is different.

We try and give sufficient funds to allow a family to pay for enough ABA so that they have the irrefutable evidence needed to persuade the LEAs to pay for the service themselves. A good number of families have succeeded thanks to our help. Fred’s Mum is running the marathon this year and on our Justgiving page we spotted a familiar name – a family we had helped some time ago. Here is what they said –

16.04.16 Good luck with the run and thank you Fred Foundation for all that you have done for our family without you Joel wouldn’t be in the school and getting the provision he has benefitted from so much.

We regularly run out of funds and have a long list of families waiting for help. We are the only charity doing this job although a much larger charity Caudwell Children often helps our families as well. We have virtually no administrative costs so the money you donate goes straight through to the families.Please consider donating to us today.

Help us win £25,000 through MasterCard/Virgin Money

0 Comments | This entry was posted on Apr 15 2016

http://uk.virginmoneygiving.com/giving/mastercard/?stop_mobi=yes

It took a serious accident for my autistic son to get the help he needed

0 Comments | This entry was posted on Apr 15 2016

From the Guardian – link at the end

I had been trying for two years to gain specialist support, but it felt like the whole care system was broken
smashed mirror
‘Glass and blood went everywhere when my teenage son removed every fragment of the window he had broken with his bare hands.’
I don’t wonder how the accident could have been avoided, because I know. The way everything was at the time, I don’t see how any parent or carer could have avoided it other than by marching to the council offices, handing their child over and saying: “Here, you do it now. I’ve asked for help repeatedly and you’ve given me none. I’ve had enough.”

The accident happened in the holidays. As usual, my autistic child and his siblings were stuck at home inside. I could no longer keep them all safe on my own outside so it was better not to go out. This had been going on for a year.
When a mother walked out on her kids, I stayed up all night to save the family
My teenage, 6ft son, playing with a tiny plastic ball and with absolutely no idea of danger, smashed a large window in the house. Glass and blood went everywhere as he removed every fragment of glass from the window frame with his bare hands. His OCD and repetitive behaviours associated with autism meant he couldn’t stop until the task was finished. We had an ambulance, police, the works. A psychiatrist left his clinics to come over. We were now an emergency.

Unfortunately, it all started in the wrong postcode. Mine.

Before the incident we had spent the best part of two years trying to get a referral, first with social care and then child and adolescent mental health services (Camhs). Things were getting worse because my autistic child’s anxieties and OCD behaviour were increasing as he hit his teens. He was hitting out, constantly ripping books and posters and destroying our possessions. I was desperate for specialist help.

For exhausting, torturous month after month it became a waiting game. Ringing the surgery, my GP trying to reach someone for me, nothing happening. Our appointments took place in our car in the surgery car park so my son wouldn’t run inside, rip everything off the walls and, basically, run amok.

Eventually, the Camhs wheels started to turn. I was asked to meet a nurse with my child, who turned out to be an assessor who obviously hadn’t read any of the previous paperwork or his statement of special educational needs.

I then asked Camhs to help me with social care as I was getting nowhere with them. All my emails were ignored. I was close to breaking point. No help from Camhs, no help from social care, and no help from school. A succession of assessors (who asked how to spell “EpiPen”), visits from inappropriately trained occupational therapy professionals, and a care assessment omitting my son’s life-threatening allergies.

In the end I was given an appointment to see a clinical psychologist. She was mortified, as was the psychiatrist when I eventually saw her. They begged me to complain as they couldn’t change the assessment process; one said they were unable to change anything even though they were on the inside. I was told by one of these professionals that I had to choose where I put my love: my autistic child or my other two children.

My family was just another accident waiting to happen.
Even after the incident, nothing happened until my child’s school said they couldn’t handle him. A meeting was held with 19 people round a table looking at my photos of the utter destruction of the house, agreeing what had been patently obvious to anyone who could be bothered to listen. A few weeks later the council agreed for my child to go into residential care at the school of my choice.

So what have I learnt? Carers are neither recognised nor remunerated properly for the difficult work they do – parents are not supported to do the job the state wants them to do, which is to save it money. Husbands and wives or partners are not supported to stay together and cope.

Professionals and social workers are told to save money by their managers at all costs. The training and support isn’t there for social workers either, nobody stays, there is no consistency, and it feels as though the whole care system is broken.

My advice to social workers and other professionals would be to remember that you have a duty of care, try to reply to emails and calls from desperate parents, even if it’s to say in a sentence that you’ve received it, you are too busy to reply now, but you will write back later. Caring is a very, very isolating job and that email reply makes all the difference.

It seems to me it is better for the local authorities that parents and carers don’t know their rights or how to complain. But exhausted carers shouldn’t have have to scrabble around trying to find out how the system should work.
Autistic people are more likely to die early. Research is needed to find out why
My advice to parents is to remain calm and proactive. I have been told by a GP that to be seen to be not interacting with services, if you get them at all, lays the blame on the parents. What for, their child’s severe autism? And crucially, email, email, email. Even if you get no response to calls you’ll need the trail later on and it provides a valuable record should you ever want to tell your story.

We’ve had a kind of happy ending, as my child is now as happy as he can be. He is in a residential school with people who are trained in complex autism who can meet his needs, and he has care during the holidays so he can return to us. But it pains me that it took nearly two years to get him there and that every child does not have the kind of experienced care he has now. In the end, my family was just another accident waiting to happen.

This new series aims to show what working in or using social care services is really like. If you’d like to write for the series, email socialcare@theguardian.com

Join the Social Care Network to read more pieces like this. Follow us on Twitter (@GdnSocialCare) and like us on Facebook to keep up with the latest social care news and views.

 

 

http://gu.com/p/4tbcg/sbl

AN ARTICLE ESSENTIALS MAGAZINE ASKED ME TO WRITE FOR THIS MONTH’S ISSUE p.39.

0 Comments | This entry was posted on Apr 12 2016
Lucinda Marsden Borer's photo.
Lucinda Marsden Borer

If you cant read it please go to the Fred Foundation Facebook page and click on that version.