Anna and Kathy at The Autism Show last year
Passionate about the cause of improving the lives of those with autism and their families and carers Patron of Anna Kennedy Online ,author Kathy Lette said.
“Autistic people may not contribute in conventional terms but that doesn’t make them a less valuable person and it’s up to us to help them flourish, starting with stamping out the bigotry that excludes people with disabilities from mainstream life. I hope the novel I’ve written “The Boy Who Fell To Earth” helps de-stigmatise the condition. It’s a celebration of eccentricities and idiosyncrasies and being different. I am pleased to be involved with Anna Kennedy who is so effective at helping those with autism and their carers. Like Anna, I want to help promote tolerance, understanding and acceptance. Because trying to cope on your own when you have a child on the autistic spectrum, is as effective as standing up to Voldemort with a butter knife.”
Anna Kennedy Online was launched three years ago by Anna Kennedy OBE Tesco Mum of the Year ,founder of Autism got Talent and Pick of the Day BBC 2 VIdeo Diary documentary ‘Not Stupid’ ,where Anna shared the story of her two sons with autism and who fought tirelessly to get them a better education. As part of her struggle Anna founded her own school Hillingdon Manor, which is now largest school for children with autism in UK.
Kathy will be presenting some of the acts on Autism got Talent on May 11 at Mermaid Theatre in London.
Please read Kathy Lette’s article on Mail on Line https://www.dailymail.co.uk/news/article-2301287/If-onions-make-vegetables-make-happy-Thats-kind-endearingly-quirky-question-mother-faced-daily-autistic-son.html#ixzz2P0NMwzwC
Yes…….I admit it I’m a Jazz fan! Don’t worry though, I’m not about to lecture you on the work of the Dave Brubeck Quartet (unless you really want me to of course…..hmmm I just detected the Anna Kennedy “Get on with it Austin” look lol)
I want to take a slightly different angle with this article but one that I feel is VERY important.
‘Pressure’ in all forms is a very powerful force. In nature we witness ‘pressure’ when a volcano finally blows releasing all that stored up inferno of energy. ‘Pressure’ surrounds us in different forms each and every day, A car tyre requires an amount of ‘pressure’ to work properly and water runs through our taps thanks to the ‘pressure’ that pushes it along.
‘Pressure’ can sometimes be a good thing. It can motivate people to do better within their role in life, but, all too often ‘pressure’ can have a very negative effect on each and every one of us.
How many parents reading this have had those days even weeks when everything has JUST GOT TOO MUCH AHHHHHHHH!!! You try your best to make life as accessible for your child or relative on the spectrum as you can. You put up with all the dark moments. Side comments are thrown at you. Objects are thrown at you. Things that are valuable to you are damaged. You have another ‘care plan’ to read. Another letter to write to the school who don’t understand why they act the way they do. Clothes that you worked hard to pay for are torn and ruined within minutes. Looks from people passing you on the street. Comments heard from others close to you that don’t understand the meltdown you are dealing with. The blunt literal comments. No thanks. No help. No sleep. It all builds and builds and one day BANG!!
Now, I’m glad to report that on the whole we as human beings don’t tend to explode! But that doesn’t mean we don’t feel the effect of all that pressure. When it blows it makes it hard for us to stay in control and everything seems harder. We may just walk away in anger and then hate ourselves even more for walking away. Our understanding and ability to do things in a rational manner is impeded when under supreme pressure. Someone that is calm and having a great day can deal with that meltdown that comes along a lot easier than someone who really is at their wits end. The calm person will reach an easier conclusion quicker because they themselves are not adding to the problem of the meltdown. Someone who is tired, exhausted, anxious, angry, frustrated will take longer to reach that same conclusion for a meltdown because they themselves are adding to the situation. A child/person having a meltdown has no ability or reasoning of what someone else is feeling at that moment in time. They are the one in crisis and they need help/support at that moment in time so they need and expect us to fully understand what is happening. If they see the person with them is agitated and angry that adds to how they are feeling…… ‘I need help so why are you stressing….why shout when I’m having the meltdown’ there is a great loss of stability when having a meltdown so it must be a comfort to them that the person with them ok may not have the answer to solve the situation there and then but they are calm and in control, you feel safe knowing they are there. If your having a meltdown and the person with you has lost it as well then that ‘comfort’ isn’t there, extra panic and anxiety sets in ‘I don’t feel safe’.
So what can we do? We can’t change or solve ALL those problems and experiences we have to face, BUT, maybe we can change how we get through them?
If I shake can of fizzy drink the reaction inside means pressure builds up. If I ask someone whether it is inevitable that the drink will ‘explode’ out when I open the can I think 95% of people would say YES. If I did open the can straight after shaking it those 95% would be correct. So what happens if I don’t open it straight away? If I just give it 1 minute before I open it. That small amount of time changes everything that is about to happen. The reaction within the can stops and the pressure eases. Now, when I open it, those 95% that said YES are suddenly proven wrong and the small handful that actually stopped to not presume it was going to be opened there and then but thought ‘hmmmm its not inevitable that it will explode out because the time you open it makes a difference’ are proven to be right.
This resting of the fizzy drink can is something we can all replicate in ourselves. A holiday or break would be the greatest thing but we know that is not likely to happen so we need to help ourselves where we can in any little way.
It is never easy for anyone caring for, or looking after, a person on the spectrum to have time for them self. Moments are there but I think all too often we miss them or don’t see them. Just a couple of minutes, even only 1!!, can make a huge difference to what we are doing and how we are feeling.
One afternoon in a residential home I was working in we had one lad who at a certain time each and every year showed a heightened pattern of challenging behaviour. This afternoon in particular was in the middle of this period of time and I was working with him. He had become so aggressive that it was not an option to just take him out for a walk as he often did in an afternoon. He was obsessing over things and the trouble was you wouldn’t know what it was going to be until it happened! So for example he might suddenly obsess over a particular colour and want to be close to it or want it as far away from him as possible. This was a big and very strong young adult. If he wasn’t happy with something then it was leaving the building in any way he could get rid of it and the same would happen if you were out walking. If he saw something he didn’t like then he would very likely smash into a house that may be being passed or shop or vehicle to get it and get rid of it and you could not stop him. So, for his own safety and that of others at times when there was only 1 person assigned to him he would have to stay in. On this afternoon he suddenly decided that he hated newspapers……great…..they were everywhere! Two of the other residents were folding up papers with their support workers ready to go and do their paper round and another one was sat with a pile of old newspapers because he liked to sit and fold them up. Nothing else would do, he HAD to have newspapers to fold. If you know someone is going to have an issue with something you can ensure it is not in their environment but with him suddenly taking against things there was no warning. There was chaos! I was getting hit…thumped……pushed and all manner of things in trying to distract him into leaving the others papers alone. This on its own I could handle, it’s not nice but hey that’s the job. While this was going on and I was trying to get him to have a nice relaxing soak in the hot tub one of the other residents who was new and had a history of being very volatile and could bite anyone near him etc went into a pre-seizure state of mind where his attitude became unsettled. The two getting ready for their paper round were sent out with their staff so there were less people around and a ‘low arousal’ environment could be put in place. The only problem was the member of staff with the ‘new’ resident hadn’t experienced behaviour like this so began to panic. With her panic setting in the resident she was supporting picked up on this and started to lash out more and more even chasing her around. The poor lady ended up hiding behind me. So now I have two very strong adults both with heightened behaviours. Somehow I managed to show the other member of staff how to best react to these things and after having earned myself several more wallops soon had one in the hot tub and one on the garden swing. Both were smiling away as if nothing had ever happened and content with the moment. It was 6pm and I was on a double shift so had already done 10 hours and had finished late the night before with little sleep as I was on sleep in duty and had done 14 hours each of the previous 4 days. I was tired and drained. Soon the others returned and also a group that had been off clothes shopping. Within that group was a new Deputy Manager who had gone out with them to see how they all were in different environments. A great manager not relying on paperwork alone but happy to get her hands dirty to see how things really worked.
Arranging the main meal for the evening could be a stress as a number of residents had different requirements and then…who is going to listen to what ……who has the television on….what they have the television on etc all this chaos some would struggle to get through as shift leader but I always coped with no issues……..except for this day. I was irritable and kept mishearing things, I was snappy with other staff, I started to do EVERYTHING because I thought others weren’t doing things right. Being tired and dealing with the 2 violent guys had taken a lot out of me putting me on edge without my noticing or being aware of it. This is a recipe for disaster!! Luckily the new Deputy Manager was watching all this go on as she mucked in. She stopped to ask the member of staff that had been with me all afternoon what had happened and she read the shift report up to that time. After gathering this info she walked up to me and said ‘Austin…..have a fag break’. I looked at her puzzled and said ‘but I don’t smoke’. Her reply was simple ‘I know you don’t smoke but your having that break NOW’. Pride sets in and of course I said I was fine nothing to worry about. Inside your annoyed because you think ‘hey I’m a tough person and nothing stops me’. The lovely Deputy Manager could see me obviously having these thoughts and said ‘Austin, you solve things and deal with things for us because when you are at your best your dynamite….but right now you are tired and not at your best and I just want you to go and switch off for 10 mins and then come back’. Begrudgingly I did as I was told. I sulked for the first minute and felt pathetic…….then I relaxed a little…..I watched some birds……could see the sun going down. When I walked back into that building Yes I was still tired Yes I was still stressed but the ‘Pressure’ within me had just been eased so I was back to being me….stable and in control. I was the fizzy drinks can that had been shook and kicked all over the place but rather than let it build and explode someone had waited a minute before opening me.
Ok you cry so why are you boring us with what happened to you? Simple, too often I think people give advice or suggestions without ever having ‘been there and done it’ also people point fingers at others. They mean well but in picking fault they make people feel bad. I give the example of myself so I can say to you all I AM ONLY HUMAN. I’ve been there, I’ve slowly felt that control slip and chaos set in, I’ve let it all get to me, so I don’t give suggestions as someone that ‘thinks they know better’ I give them as someone that has learnt for himself from his own failings.
Now I know as a parent you can’t just say ‘oh excuse me for 5 minutes’ and walk off but you can work together. Give each other, when you can see you are both stressed, those 5 minutes to go and walk away while you stay carrying on and then swap round. In those 5 minutes you can do whatever you like lol Cry, Scream, feast on ice-cream if it helps! But whatever it is that does help DO IT. Just take those small few minutes to pat yourself on the back and say ‘WELL DONE’. All parents and relatives of those on the spectrum do amazing things and yet you rarely tell yourselves that.
Even as a single parent you can do the same. It’s not just about walking away but about just finding a minute to think something different. If you are tired….frustrated….at the end just keep doing what you are but say to yourself ‘Hey I’ve done really well here’ ‘Everything is going to be OK’ Give yourself support and comfort. You’ve dealt with all these things before so remind yourself ‘hey we’ve got through this before and will again now’. Even if someone is having a full blown meltdown ensure they are safe but while there just take that moment to gather your thoughts because I PROMISE you it is easier to deal with everything with that little bit of control than when it has all drained from you.
Every night when you go to bed, which I know for many of you may not be for very long! Just tell yourself before you get into bed ‘Well done, you did great things today’. On the Rare occasion you get to have a cup of tea parents ENJOY IT!!! If the chance is there to sit down then do it! Take a load off those feet and your head for just few minutes. Those minutes I spent outside gave me the strength to get through and allowed me to remember I CAN DO THIS. Despite my hard work and the extra hours I put in that still doesn’t compare to what a parent does because even if it was just for a few hours at night I got to walk away. I might still think and worry about those I worked with but they weren’t always there needing me. A parent lives, breathes and exists under that umbrella of Autism 24 hours a day…….7 days a week….52 weeks a year……10 years a decade….on and on and on.
Autism in all its many different forms can be challenging, difficult and often cruel to those that are on the spectrum. Those people would struggle to get through life and achieve the simplest things they do without YOU. Every child needs its parent, BUT, every Autistic child needs its parent and that love, stability and comfort more than anyone else can ever comprehend. You do and put up with things that the majority of other people could never imagine handling so find that time for yourselves no matter how short and stop and think….
“ I’M PROUD TO BE ME…..”
(Written by Austin Hughes of AKO)
Act Now For Autism is a core group of people passionate about the future and well-being of children and adults with autism and associated conditions in the UK. Act Now For Autism are campaigning against aspects of the Welfare Reform Bill, specifically the WCA, Work Programme and the impact of the changeover to Universal Credit and PIP. We are ardently campaigning for advocacy to be offered to anyone who has to have a face-to-face assessment.
As a Co Founder of Act Now for Autism and Tesco Mum of the year,I handed a letter to The Prime Minister at No 10 Downing Street on 4th March 2013. Please see a copy link https://autismcampaigners.blogspot.co.uk/2013/03/ignored-and-ineligible.html?showComment=1362471139670
Please read his response:
Anna Challenges David Cameron.
Prior to the interview, Anna, who was recently awarded an OBE for her services to autism, turned to social networks to find out what issues parents of those with autism most wanted to quiz the Premier about. Within an hour she had received over a hundred suggested questions from concerned parents. The following is an edited transcript of Anna’s interview with David Cameron:
Anna: “I feel an awful lot of pressure from parents…We’ve formed a virtual [online] autism community. We are supporting each other and parents are very angry at this moment in time. What they are saying is: Why does accessing services for simple education and care have to be a constant battle? It’s bad enough getting a diagnosis. It seems like you are almost being penalised because you have a child with autism.
“Why is the system so difficult? The parents are so anxious, they feel vulnerable, they are worried about their children; they are worried about them becoming adults. It seems that fewer and fewer services are available for them.”
David Cameron: “Were most of the questions about the process of getting a statement?”
Tesco Mum of the Year Anna Kennedy.Anna: “…you’ve got local authorities that write these statements that are not worth the paper they are written on. It’s woolly word bingo. You’ve got things on there that they say they’d benefit from – well I’d benefit from winning the lottery!
“What I say to you is, these parents that don’t really know anything about the statementing process, they read these statements and they think I’m going to get speech and language therapy regularly, but as long as they get it once a year that’s regular. I have regular Christmas dinner. It needs to be specified; it needs to be quantified. I know that you’ve got the new care plan coming together and you’re saying that health, social services and education are going to be working together; I’ve seen no evidence of that, so what action are you going take?”
David Cameron: “You are absolutely right, I think the process of getting the statement of special education needs has been…very confrontational and also it hasn’t taken into account enough health needs and social needs and that’s what this new reform – it’s not in yet, we haven’t introduced it properly yet – should deliver. That when you’re getting your statement, rather like the Passport [to care] we were talking about, the person responsible for health and education…they’ll all be sitting there together so when you get the statement it should include everything. It’s not perfect because, in an ideal world, you’d probably have the statement done by someone completely different to the local authority because in the end the local authority is both the provider of the statement and the provider of the services. We can’t do that now, but I think this new process of having health and social care more involved will be better and I hope this new process is going to be more streamlined.
“And also we address something, which is more difficult, but nonetheless which needs to be said. I think part of the problem in Britain is that we have so many children who are specified as having special needs and actually what we need to do is focus on the ones that really do have a special need, that have a learning disability, and really making sure we help them. I think we’ve been too slack at saying some children who have got problems with reading, for example, have got a special need, whereas sometimes they just haven’t been taught properly. So I think the more you can focus on the most needy, the better you can do for those people.”
Anna: “I’ve spoken to parents where they’ve waited months and months for an appointment and the consultant paediatrician says this child’s got some autism traits. It’s like saying you’re a little bit pregnant. You either are or you’re not.
“You’ve got parents who are waiting and because they don’t have the passport with the diagnosis they are not getting the support they need. The children are stressed at home, their parents are stressed and their siblings are suffering. These parents need someone to sit down and say, this is what autism is.”
David Cameron: “That’s true, you’re the expert, but isn’t it difficult with autism because there is a spectrum. I’m always struck when I see parents with autistic children because if you’ve got a severe learning disabled child, you’ll often find those parents in one group saying we’ve got a special school, we’ve got to save this excellent school. With children with autism, you have some who want special schools for autistic children, some who want mainstream provision with help for autistic children. The spectrum is quite big. I don’t know whether you find this with your school, but that does make it more complicated.”
Anna: “You have got children who can cope in mainstream schools; then you’ve got children like my own two sons and it just wasn’t working for them. Angelo didn’t even get the chance, because they said they couldn’t even meet his needs, and that was when he was just starting school. I shouldn’t have had to re-mortgage my house; I shouldn’t have had to set up my own school. I’m glad I’ve done it because I’ve discovered strengths I didn’t even know that I had.”
David Cameron: “When you first had your children and you were looking at where to go to school, did you find you got a good explanation of what was on offer? I think this is a real problem.”
Anna: “No. I was told by Hillingdon the ball was in my court and it was up to me to find the right type of school. At first, I was told my kids were the only kids in Hillingdon that had autism, which made me feel really isolated.”
Prime Minister David Cameron.David Cameron: “We have changed the rules about this and this was based on my own experience. You’ve got to make sure that parents are properly told about what is available. The presumption should be choice. It should be the choice for the parent, looking at the evidence, looking at what’s available to make a choice about the child.
“There used to be the presumption heavily in favour of mainstream schools and that meant – interpreted by some local authorities – that they didn’t tell you about what was available. When Ivan was born they didn’t tell us about the school that he ended up at. They didn’t even tell us that it existed. We had to find out about it separately and that’s nuts.”
Anna: “The thing with autism is that there are so many different strategies – I think I counted about 17 of working with children with autism. Parents wonder, which one do I choose? What’s going to be the best one for my child?”
David Cameron: “Isn’t that inevitable because we haven’t got to the bottom yet of some of the causes and what the effects can be?”
Anna: “I think the thing is training – consistency in training. I think that is what a lot of mainstream schools are crying out for.”
David Cameron: “The Government is putting money into the National Autism Centres, so we are funding this research, but there are different approaches and I don’t think we can totally legislate for one while it’s still uncertain.”
Anna: “What are the Government’s priorities for children with autism? Parents need to hear something because they can’t see the light at the end of the tunnel.”
David Cameron: “Help the parents make the choices. The approach this Government is taking is much more trusting of the parents, saying you should have more choice in safe special schools, stop the closure programme which we did. And then to put more power in the hands of parents whether it’s through individual budgets and direct payments so you’re in command.
“We are changing the statementing process to make it more inclusive of the things other than education.”
Anna: “I think that for some parents that’s too much pressure because you have to deal with the diagnosis. To be honest with you, I don’t know how I’m not on the floor because I sleep three to four hours a night because of my son Angelo.”
David Cameron: “How old is he now?”
Anna: “He’s 20. I’ve had to set up everything myself, including a vocational college for 45 adults. I didn’t even go to university; I just about got ‘O’ Levels. It’s the passion for my boys and listening to other parents that drives me on.
“I’d like to ask one more question, if I may, for adults. The disability living allowance is going to be replaced by personal independent payment. What’s the Government going to be doing to ensure that adults with autism will not be at a disadvantage when being assessed for things such as ATOS, work capability assessment, disability living allowance? Again, parents of adults and adults themselves who are affected are very anxious.”
David Cameron: “I can understand the concern about it. Basically, disability living allowance has been a good benefit. It’s not means tested. It’s based on your disability, not your earnings, and it has worked for many people. I think the problem with disability living allowance is that – as you know, you’ve done it, I’ve done it – it’s an enormous form you fill out…
Anna: “You need a degree to fill it out…”
David Cameron: “…It isn’t really reviewed and assessed properly and it isn’t really based on a proper medical check. And so personal independence papers which we’ve put together listing very carefully to all the disability and medical organisations will be much more based on what your capabilities are and what your medical diagnosis is, and will be properly reviewed.
“Now this is not about cuts. The money – DLA and PIP – the money’s going up, not going down, but there will be proper assessments. Because sometimes people on DLA have just been left on it for year after year after year. So what I‘d say to people is, of course change makes people anxious but actually it’s better to have a system that properly assesses you and then reassesses you on your need rather than a very, very complicated form.
Anna: “I’d just like to give you a letter, if that’s alright, from 12,000 families of adults with autism; all they’re asking for is an independent autism advocate, that when they go through this process of ATOS, that there’s somebody there. Because some of these adults come across as more able than they are.”
David Cameron: “What it’s meant to be is checking out what you are capable of doing, which doesn’t necessarily link to your medical condition. There are people who have a physical disability but who are have incredibly fulfilling work lives because they’re able to do all sorts of things. So we should be looking at what people are capable of. I also think the whole issue with ATOS and work capability assessments, because someone is disabled or someone has stress or someone has other conditions, we shouldn’t write them off; we should be asking, what can you do? Because, actually, even if you can only work for a few hours a week or you’re only capable of some sorts of jobs, it’s much more fulfilling to be able to do something than actually to be written off that you can’t work.”
Anna: “I understand what you’re saying, but have a read.”
David Cameron: “But I will have a read of the letter.”
Anna: “Thank you.”
Anna Kennedy OBE