Summer holiday? Not for us
The school holidays are a time when most families catch up on sleep, take a trip abroad, or maybe just enjoy a break from their normal routine.
Not so for us. When you have a child with severe autism, the school holidays are often when the real work begins.
Our son is now 17, and has severe autism and a learning disability. He is an extremely active young man, likes the outdoors and has no sense of danger. He would think nothing more of running into the middle of the road and needs two people supporting him at all times outside in the community.
All this means that we are basically working a 24-hour shift. I can never take my eyes off him for a second. Without school to break up the day, it can be enough to bring you to breaking point.
It’s also difficult for my other children. Often we can’t go out as a family because of his needs, so they end up on Instagram, watching as their friends whoop it up in the big outdoors.
So short breaks, where your child spends time with a support worker to give you a rest, are essential for parents on many levels. They are provided by local authorities and charities, and they are an absolutely vital lifeline for parents of children with a severe learning disability.
Having access to short breaks for my child means I can take my other younger children out of the house and spend time with them, or even do something as simple as drive them to a friend’s house. After all, it’s their school holiday too.
I didn’t even know short breaks existed until my child was 13, even though the professionals around us knew I was struggling. No-one had told me.
When you bear in mind that 85% of marriages of families with autistic children break down due to stress, it’s shocking that many parents aren’t even told what support is available.
We’ve been accessing short breaks for four years now, and I haven’t had any problem with the commitment and genuineness of the people caring for my son, although I have been worried at times about their lack of autism experience.
However, I have been extremely stressed by the administrators ‘above them’ in the office. There is always a mass of paperwork to fill in, which feels like a box-ticking exercise. To say that the authorities are working with parents to shape the activities is totally tokenistic.
I have even had a call from the service provider saying my son wasn’t suitable for the scheme, as he wasn’t into team-building. I felt like they had completely missed the point, that we were being penalized for having a child with complex needs.
I have also found that some of the sessions on offer just aren’t accessible for children with complex needs. We were offered an all-day session at the bowling alley, for example, which was far too much for my child – or any child! – to cope with.
The only real success I have had were with two breaks supplied by two amazing charities. One was on a farm and the other was at a theme park, and they were run by bright volunteers who looked after my boy and loved the activities as much as he did! It was perfect for my son.
Sadly, demand totally outstrips supply and you only get to go once on these kind of breaks.
The world of a carer of a disabled child is about many different things, but I have found that processes seem to come before people. The system is impenetrable, and it seems like the biggest concern is budgets, not people or families.
I don’t think there’s much “I wouldn’t have it any other way” or ‘celebration of quirkiness’ going on here and I’m glad – not for this poor family – but it’s the truth for many who get no help or the right support and it needs to be out there.
We have recently given out a number of grants to families.The money all came from the donations you made towards Lucinda running the Marathon. Here is a thank you we have already received.
Thank you so much for our recent grant. This money has helped us secure a place on the R. S. workshop being run by my ABA therapist in November. It has also covered the last 2 sessions and the remainder is going towards an intensive Summer ABA
Programme to get Rob out of nappies before school and expand on his talking as he has started using vocal communication. I am over the moon with his progress. Thank you.
Click on this link to read more https://www.theguardian.com/society/2016/jun/14/brexit-nhs-health-social-care-disabled-people-eu-referendum
Alongside the economy and immigration, the NHS has emerged as a key battleground in the EU debate. That is because the leave campaign decided early on to deploy the health service as a core argument in their plea to voters. Leave leaders Boris Johnson and Michael Gove have said consistently since campaigning began in April that Brexit could free up up to £8bnextra a year to spend on the NHS.
Leaving the EU would not, however, provide more money to spend on the NHS, according to the Institute of Fiscal Studies. “Rather, it would leave us spending less on public services, or taxing more, or borrowing more.”
Labour has dismissed the leave campaign’s claim of a bigger NHS budget as “misleading, simplistic and complete and utter nonsense”. Its own analysis concludes that a post-Brexit economic slump could force the government to cut the Department of Health’s budget by £10.5bn – the equivalent of every hospital in England having to shed 1,000 nurses and 155 doctors.
People don’t believe us when we tell them what families have to go through to get the correct provision for their child. This article highlights the problem very nicely so please do share.
THANKS SO MUCH GUYS #Fredland50….whilst everyone having a nice lazy bank holiday weekend sipping rose etc…….
They did it!
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.
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, 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.
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
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.
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.