Where have I been?

I have considered that but only very fleetingly. In truth, things have really been rather a struggle.

It is so difficult to find the right people to employ for Zach. It may be a mixture of Brexit and Covid but there does not seem to be an appetite for this type of work.

Its a tough job, emotionally and physically (we like Zach to do plenty of activities and exercise) which has poor reward both financially and recognition wise. It’s certainly a job which takes a strong, resilient and very dedicated character.

There are however wonderful rewards.

Despite constant recruitment Zach’s team is down to one permanent member of staff and one part time. This is making life difficult and uncertain as Zach requires 2:1 support. He also needs a BCBA (Board Certified Behaviour Analyst) on the team to keep standards and consistency high.

The stress of this takes it toll on everybody. I worry constantly about whether Zach is getting the support he needs, making the progress we know he can make, doing enough exercise, learning life skills and eating good food. Coupled with that I worry whether sessions will be cancelled which really throws Zach and of course means it is difficult for John and I to go about our daily lives.

The staff struggle has been going on for a long time now and it is not improving which has definitely added to my mojo going missing. It is hard to wake up feeling positive when we are totally unsure of what is going to happen that day/week and what does or doesn’t happen is totally beyond our control.

I lost my dear Dad in March, he was 98 years old and since last Summer had been losing weight and becoming weaker. Not eating and becoming less mobile. It was hard to witness and know what was coming. I know how lucky we were to have my Dad for so long, we lost my Mum at 95 so I do count my lucky stars but at the same time that doesn’t make the loss any easier.

Every time the phone rang for months my heart was in my mouth and during the last weeks of his life he sadly kept falling as a result of his determination to get to the bathroom despite not having eaten anything but a Bourbon biscuit or two for days.

Dad had a peaceful death in hospital on a ward which was very caring and kind. I miss him and for some reason feel like I have lost my Mum all over again. Having spent so much time with Dad in the last months of his life there is a big hole left.

My anxiety every time the phone rings has gone, and Dad is at Peace but it has certainly contributed to my feeling of things being sad and difficult.

In memory of Geoffrey H Bruton 29/07/1924-03/03/2023 who almost made it to a full century.

We are incredibly lucky that Hertfordshire is helping Zach purchase a 25% share in a beautiful brand new house, very close to us and in the town which he has grown up in.

This of course is great news however trying to find a suitable provider to support Zach in his new home is proving incredibly difficult. We need a company who will provide a small team who are well versed in ABA or PBS. I have been in touch with many providers now and am yet to find one which looks suitable and provides this type of support.

Many providers seem to provide support in a property which they own, this isn’t something I would consider for Zach. His home needs to be secure and belong to him. He won’t be a visitor in his own home.

We also found a clause in our ‘Property and Affairs’ Deputyship* which said that we could not purchase property on Zach’s behalf. Anyone who has had dealings with the Court of Protection will know what a long and drawn out process it is waiting for deputyship, filing the right forms, in the right way, all signed in the right place. We are still waiting for our amended Deputyship to be granted and time is really marching on.

Last week I found out the house will be completed three months before the date which we were originally told which puts even more pressure on.

I have decided to try to document on my blog our journey with Zach’s transition into his new home in the hope it may help others doing similar things and that it helps me rationalise and balance in my own mind what is happening.

I would be very interested in how many other families are struggling with support staff for their loved ones. Our loved ones deserve the very best, as everyone does when it comes to care and support and it just doesn’t seem to be there. We all need to work together to try to solve this massive hole in support and care. Without the skilled and knowledgeable workers there is none.

Our enterprise, Spectrum of Misconception is being neglected as a result of all these things which is a shame as we have some amazing new products in the store and also coming. It just feels like one thing too much at the moment but having worked so hard to gather interest and orders I really don’t want to let it collapse.

Please take a look at our website if you have a moment, we are always very happy to receive your orders.

We have a number of events coming up so check out the ‘Events’ part of our site, it would be great to meet some of our present and new customers.

*A property and affairs deputyship is a legal appointment made by the Court of Protection in England and Wales. It is granted to someone who is responsible for managing the financial affairs of someone who lacks the mental capacity to do so themselves¹. The role of a deputy is an important one that carries a great deal of responsibility. They step into the client’s shoes, and ‘become’ them for all financial purposes. A property and affairs Deputy will involve themselves fully in every aspect of the client’s life that will have an impact on both their personal and financial situations¹.

You may have noticed, or you may not that my blog posts have been few and far between. There are a number of reasons for this. I would like to be able to tell you it is because I have what will be a riveting podcast coming out very soon but unfortunately that isn’t it.

World Autism Awareness Day 2nd April 2020.

This year’s World Autism Awareness Day is going to be different to any other since the very first in 2007.

The impact of Coronavirus has been massive to all of us, changing the way we live our lives to keep one another safe and to support the over stretched NHS. As we have all seen in the media, not everybody has been able to adapt to these changes or have chosen not to and these are neurotypical people who do not want their lives and routines disrupted.

For us as a family, and for many others in the exact same situation Zach is totally dependent on John and I. Without us he would not manage, we cannot be ill. We need Zach’s home life to be as it was before Coronavirus and that includes smiling a lot, laughing, cooking, cleaning, looking after Zach’s personal care, taking Zach out in the car and for walks.

Like so many other people we have nobody except Beam who we could ask to take care of Zach if we were seriously ill. There is also the isolation period which would be incredibly difficult to cope with. Please see my previous post about a day which Zach spent at home.

I am also a Community Nurse, going into other peoples homes at the moment is not something which I am keen to do especially when I have a 22 year old son who has autism and complex needs at home who is dependent on me.

Imagine having autism and being told that everything you do on a day to day basis is going to change and not understanding the reason why.

You also have to stay 2 meters away from everyone! Try telling that to someone who has little or no concept of personal space.

Most people who have autism find change difficult to cope with, especially when their routines are deeply entrenched and can be the very thing which keeps their anxiety at bay. The predictability of having one or two things through the day which you know are going to happen are very reassuring.

Lets add to that, all of a sudden you aren’t being given the brand of breakfast cereal which you have been eating for the last 6 years without missing a day. The cereal you are being given looks completely different, you can’t bring yourself to eat it so you go without despite being hungry.

I am not sure how widely known it is that people who have autism very often refuse to substitute their chosen brand with a different brand of exactly the same food. Without the Coronavirus it can be extremely difficult sourcing the exact food item needed, imagine what it is like now!

Branding is so important to some people who have autism, its usually about the way the food presents rather than the taste as if it looks wrong it is highly unlikely it will ever get tasted.

Zach’s day usually has either golf or bowling involved and has done for quite a while now.  It is important to Zach that these activities happen, he goes to a variety of bowling alleys and places to play golf. Suddenly all these places are closed and Zach doesn’t know why? His support team have taken him to show him that these favourites are closed and locked as they did not want him to think that they were open but he wasn’t going.

We are very lucky that Beam are continuing to support the young people they work with, at a time when their lives have changed beyond recognition they are at least seeing the team who support them day in day out.

Zach’s team are being creative and finding new things to do with Zach during the day, he now has some exercise equipment at his base so he and they can keep fit.

Obviously just because Beam Team are Superheroes doesn’t mean that they are immune to this awful virus so correct procedures with isolation and being extra careful apply! Thank goodness for Beam!

A massive concern if all support stops is that it maybe like going back to the beginning when things start again,  the new norm will be staying at home and people who have autism often don’t like change. (sorry I’m repeating myself here!)

It seems strange that just a couple of weeks ago carer’s were being called ‘unskilled workers’ and they are now being applauded by the very same people for continuing to work despite the crisis we all face.

I am sure I have blogged before about the fact that this country (and every other I imagine) could not run without the expertise and support this sector of the workforce supply.

If those in Government consider working in a care environment to be an easy job I would like to see them walking a day in the shoes of someone delivering care. Not just to those who have autism but the elderly, physically disabled, those who have dementia, long term illnesses, mental health illness just so they can find out what skill is actually required.

Its for this reason that Spectrum of Misconceptions World Autism Awareness Day message has taken on something of a different meaning certainly, the Beam Team ‘Can and they do’!

The Coronavirus Bill is a huge blow to those who have autism and complex needs, along with the vulnerable needing Continuing Health Care and those who have mental health illness.

Although the first couple of paragraphs of the bill are about ‘our NHS’ (which Government have been neglecting for as long as I can remember and I have been a nurse for 30 years) they draw the reader in to feel it is for the good of everyone and then BOOM! it takes us back years by telling us that many parts of the Care Act of 2014 will no longer stand, that really frightens me.

Coupled with the Coronavirus Bill,  initially NICE (The National Institute for Health and Care Excellence) suggested that the NHS Clinical Frailty Scale would mean those who have a disability should not be considered for a priority bed as they would be marked as frail on admission.

Zach is anything but frail!

Fortunately they have now back tracked on this but it comes as a massive blow that it was even written and agreed in the first place.

That some of the very people who have been told to self isolate would not be considered important or that the quality of their life is worth saving is a very stark reality.

This World Autism Awareness Day on 2nd April please remember that although we are all going through tricky times (and I absolutely recognise there are many other groups of people struggling as a result of CV19) those who have autism and their families are going through a particularly difficult time, when their every day life already sometimes feel impossible.

Spectrum of Misconception have sold plenty of the T-shirts we have especially designed for World Autism Awareness day and we want to thank everyone who has supported us and will be wearing their Tee tomorrow (its just a shame that they have to stay at home!). Here are some modelled by our customers.

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Our message is still ‘I can and I will’ but maybe has a subtitle of ‘it’s just much more difficult than it was a few weeks ago’!

 

 

Life, stranger than fiction.

It is certainly true that life can be stranger than fiction but our norm is what we live by and we often forget that others may regard it as a little bit crazy!

On Sunday Zach had a day at home with us. He likes the odd day doing what he fancies and being in charge, it doesn’t matter how hard we try to redress the power balance, we live by Zach’s rules.

The day starts with me being told to get up, usually pretty early.

I come downstairs and sit at the table, Zach doesn’t like me going into the sitting room and there is a ritual which has to be performed if I do.

The ritual involves me being sat on the sofa and all the cushions thrown on the floor, I am then pinched on the cheek a few times. Not the worst but not the best so I do try to avoid it where possible.

How does Zach know I am in the sitting room? Because some of the floor boards creak and he always hears them and is up out of bed like a shot….

I have a number of pyjama tops which Zach likes me to wear, all various shades of pink and he takes me to change my top about every 15 minutes. Its not easy being tired and grumpy in our house as it all needs to be done with a smile!

Due to the pressures of being micro managed and not allowed to move unless told to I usually nip out for a few hours just to try and hang on to the last crumbs of sanity I  have.

It goes like this, all three of us go out for a drive as requested by Zach, the route determined by Zach. When we get back to the house, John and Zach always have to go for another drive, a longer one which means I should have time to shower, dress, get my bike out and nip off to see my Dad.

I come into the house and charge up the stairs for my shower, wash the bits that count and quickly dry myself, I am up against the clock! Drag my clothes on my still damp body and take a quick peek out of the bedroom window and ……they are back!

They have only been gone about 10 minutes, I charge downstairs and go out of the backdoor, locking it behind me. I have shoes, clothes but my hair is wild underneath the hat I wear to avoid getting my hair pulled and no key, phone or bag.

 

I stand out of sight behind our shed and listen….they are coming into the house and not going for the usual walk!

Zach will usually go upstairs to relax and play music but I can hear him downstairs, listening to Mika. I can hear John upstairs as a window is open so I bide my time and clean my bike (which hasn’t been done in about 3 years) as I find it hard to be idle and just do nothing!

I keep peeking around the corner of the shed to see if I can see John to let him know I am there, I see Zach dancing around eating his breakfast, I dart back, fortunately he doesn’t see me.

My mind wanders back to when my Nursing Tutor told me he thought I should join up to one of the armed forces the Army, Navy or Royal Air Force. He thought that because I liked sport and it would be ideal for me. What he didn’t realise is that I didn’t want to live a life being told what to do by someone else….hold on…

So there I am, feeling like I am surveying the house, staking out while I clean my bike. I knew I wasn’t right for the Armed forces.

We have a woodshed which has slats just next to the shed and as it isn’t full I could squat down by it and peek through the slats to see into the kitchen. John usually spends time pottering about in the kitchen on a weekend morning, just not today it would seem.

After what felt like an eternity, I can’t hear Zach’s music anymore and I think he may have gone upstairs but I don’t want to blow my cover so stay hidden behind the woodshed. I peek through the slats and see John in the kitchen bending over to put washing in the machine.

He turns and he sees me, he looks a bit alarmed. I signal to ask if Zach is upstairs and he silently nods. He unlocks the back door and passes me out the bits I need and off I go.

Fortunately its a windy day so I can (possibly) excuse my hair to anyone I see.

I pedal off down the road feeling victorious!

I have a nice visit to my Dad, he talks to me about his days in the Royal Marines and I think he would have been proud of me this morning.

When I get home I know what will happen and am ready for it.

Zach will ask me what is happening tomorrow and I will tell him that Maggie and Paul are coming to get him in the morning and he will tell me to go to bed to make the morning come more quickly.

I am back in my pyjamas which is what Zach requires and have to change my pj top a good few times before the day is out. I sometimes rebel a little and try to get downstairs but Zach comes to find me and sends me back to bed.

Around 5 O’clock Zach passes me my uniform for work, I start at 6 but am sure there is stuff I can do on the work intranet while I wait.

Work over, and I am prompted to get back into my pj’s and get into bed for the final time today.

With the exception of being stuck outside in limbo between going out and staying in, it was a normal day.

Life, stranger than fiction? I think so.

 

 

 

That was the year that was….

 

Pretty difficult to say the least!

I hope everybody reading this had a good 2019 and I wish you all a very Happy New Year.

There were high’s as well as low’s to 2019 for us,  which is at least a good thing.

Our Social Enterprise, Spectrum of Misconception did really well selling autism awareness Christmas cards.

The very lovely Malini Croxson who is an artist from Hertford did the illustrations for us, they were warm and beautiful images which conveyed a powerful message regarding autism as well as being Christmas in an image. Mal was wonderful to work with and we were thrilled with the end result.

We had the cards by late September so were ready with plenty of time to start selling, we had some of the cards which Laura Dixon did for us last year left so sold them too.

The cards flew and once again we are very grateful to everybody who ordered and sent a message with their card regarding autism.

Zach did brilliantly, he is involved with putting the orders together, making up the boxes, packaging the cards, and then taking them to the post office.

We used a small local post office in Sele Farm and the staff were very helpful and quickly got to know Zach.

Around the second week in December ‘Mind the Gap’ the shop and café at Hertford North Station started selling the cards for us. Zach’s support team often drop in there on their way to and from work so have good banter with the guys there. We were really grateful for this extra exposure and hope we can get them in there earlier next year.

We have sold 2500 cards this year which is brilliant in just our second year. Zach once again stepped up to the challenge and with the expert support from his team did everything that was asked of him.

An absolutely massive thank you to all who have supported us and continue to do so, you are the kindest and the best.

Zach really enjoyed taking around cards and a small gift to those places he visits regularly. One for his hairdresser, Bobbie at Cut Loose, the security guard at Tesco’s Hertford, the guys at Mind the Gap, and for staff at trampolining and golf that he goes to very regularly.

He then chose me a beautiful bunch of flowers from Tesco and came home with a beaming smile on his face as he thrust them into my hand. There was also a Christmas card (Spectrum of Misconception of course) signed by him, it was lovely.

So that was all great and to be honest a very welcome distraction from other things.

My beautiful Mother passed away in September, she fell in August 2018, went into hospital with a broken wrist and never walked again (She had walked half a mile the day before the fall).

The care at the hospital was pitiful and I just had to get her out of there so she went to a local nursing home that my Father could get to every day. Unfortunately they didn’t walk her either and despite regular physio and me and other family members attempting to get her moving she spent the vast majority of her days sitting in a wheelchair which was only made for occasional use.

I didn’t miss many days visiting in the year she was at the home. I worried for her welfare. Boring days spent sitting in a wheelchair wasn’t what she was used to, Mum loved being around people who were chatty and cheerful. Some were, but plenty weren’t.

I went to the residents meetings to ask about trips out, activities and so on. There was a shiny brand new mini bus parked outside but I think she went out twice. I couldn’t get her into the car anymore because she was panicking when mobilising being so used to the wheelchair

Dad visited almost every day, they would sometimes sit and hold hands and nod off to sleep just as they had at home.

While Mum was well and the weather was fine we would walk down the lane and chat about the birds and flowers. On a Friday I was her only visitor and we would do something like play a game, do a jigsaw or I would give her a manicure or other beauty treatment. Sometimes we would listen and sing to music, sometimes dance with me holding her hands and moving the wheelchair in time to the music.

I will always treasure all the time I had with my Mum, she was 95 and I feel so lucky to have had so much time with her in my life. Mum was always so appreciative and enjoyed and got joy from such simple things, her face would light up when she saw me arrive.

Mum stopped eating, she had been suffering terribly with gingivitis (bleeding and inflamed gums caused by bacteria in the mouth, caused by not having teeth cleaned!) I was doing thorough mouth care every time I went in,  a very good friend who is a Dentist had visited and told staff what they needed to do but it didn’t improve.

She was losing lots of weight and the GP told me that Mum was dying, which I sadly knew but it was still hard to hear. The GP told me this with Mum in the same room, I winched in pain for Mum being present to hear this. Hearing is the very last thing to go when somebody is very unwell and it was both unprofessional and clumsy of the GP to do this.

The next two days were the brightest Mum had been in weeks and I like to think it was a middle finger from her to the GP. We talked and laughed and enjoyed the Summer weather.

From there things went downhill though and I was spending most of every day by Mum’s side doing what I could to make sure she was comfortable.

It was a terrible struggle for me, as a nurse who has spoken up for so many patients over the years, making sure they had the care they deserved and were pain free to be having to do it for my own Mother.

My heart is incredibly heavy in the knowledge that the expertise of care that was needed was not given. Care Homes must not be afraid to use end of life medication to ensure comfort and peace for those in their care and their families. They must also ensure that carers are aware of the need for extra care to be given to palliative patients.

Mum passed away on the 26th of September, just over two weeks after her 95th Birthday. In the final week of her life I know, that Mum knew I was with her, she would still put an arm around my neck when I kissed her and also smile at me right up until the morning of the day she died.

I am finding that I am struggling more now than I did when she first died, the longer I go without being able to put my arms around her, the first Christmas, and now a year in which she has not lived but I am sure time will heal and I will find ways to keep busy and keep smiling as Mum would.

Elderly care, since I have been involved in some capacity, which is now 36 years (scarily) has never been what it should be. However I am increasingly upset and concerned when I visit patients who have had a stay in hospital and have not been got out of bed at all because there isn’t time. Short cuts are constantly being taken with some of the most vulnerable members of our society. It is, as it always has been the people who are least able to speak up for themselves but these people deserve respect and care just as the rest of us do.

They haven’t always been elderly, they have lived and worked, raised a family, travelled and some including my Mum been in a World War. They are people, someone’s Mother, Father, daughter or son.

The other big change is that after 11 years of volunteering with the charity Mudlarks I have for a number of reasons finished. I have enjoyed almost all my time doing things with and for the charity and the way it has grown over the time it has been running is amazing. I miss the team I worked with at the café and being part of that but will move onto pastures new, I am not sure which pastures yet but I am sure I will find something! I wish Mudlarks ongoing success, the café which I loved so much is moving to a new building shortly and will only improve I am sure.

So all that is left is for me to apologise for my sombre post, I hope I haven’t dampened your spirits too much. I know that my spirits will lift once I have my new goals and interests worked out.

In memory of my wonderful and incredible Mother, Peggy Margaret Bruton 1924-2019, never to be forgotten.

 

 

 

 

That was the year that was….

 

Pretty difficult to say the least!

I hope everybody reading this had a good 2019 and I wish you all a very Happy New Year.

There were high’s as well as low’s to 2019 for us,  which is at least a good thing.

Our Social Enterprise, Spectrum of Misconception did really well selling autism awareness Christmas cards.

The very lovely Malini Croxson who is an artist from Hertford did the illustrations for us, they were warm and beautiful images which conveyed a powerful message regarding autism as well as being Christmas in an image. Mal was wonderful to work with and we were thrilled with the end result.

We had the cards by late September so were ready with plenty of time to start selling, we had some of the cards which Laura Dixon did for us last year left so sold them too.

The cards flew and once again we are very grateful to everybody who ordered and sent a message with their card regarding autism.

Zach did brilliantly, he is involved with putting the orders together, making up the boxes, packaging the cards, and then taking them to the post office.

We used a small local post office in Sele Farm and the staff were very helpful and quickly got to know Zach.

Around the second week in December ‘Mind the Gap’ the shop and café at Hertford North Station started selling the cards for us. Zach’s support team often drop in there on their way to and from work so have good banter with the guys there. We were really grateful for this extra exposure and hope we can get them in there earlier next year.

We have sold 2500 cards this year which is brilliant in just our second year. Zach once again stepped up to the challenge and with the expert support from his team did everything that was asked of him.

An absolutely massive thank you to all who have supported us and continue to do so, you are the kindest and the best.

Zach really enjoyed taking around cards and a small gift to those places he visits regularly. One for his hairdresser, Bobbie at Cut Loose, the security guard at Tesco’s Hertford, the guys at Mind the Gap, and for staff at trampolining and golf that he goes to very regularly.

He then chose me a beautiful bunch of flowers from Tesco and came home with a beaming smile on his face as he thrust them into my hand. There was also a Christmas card (Spectrum of Misconception of course) signed by him, it was lovely.

So that was all great and to be honest a very welcome distraction from other things.

My beautiful Mother passed away in September, she fell in August 2018, went into hospital with a broken wrist and never walked again (She had walked half a mile the day before the fall).

The care at the hospital was pitiful and I just had to get her out of there so she went to a local nursing home that my Father could get to every day. Unfortunately they didn’t walk her either and despite regular physio and me and other family members attempting to get her moving she spent the vast majority of her days sitting in a wheelchair which was only made for occasional use.

I didn’t miss many days visiting in the year she was at the home. I worried for her welfare. Boring days spent sitting in a wheelchair wasn’t what she was used to, Mum loved being around people who were chatty and cheerful. Some were, but plenty weren’t.

I went to the residents meetings to ask about trips out, activities and so on. There was a shiny brand new mini bus parked outside but I think she went out twice. I couldn’t get her into the car anymore because she was panicking when mobilising being so used to the wheelchair

Dad visited almost every day, they would sometimes sit and hold hands and nod off to sleep just as they had at home.

While Mum was well and the weather was fine we would walk down the lane and chat about the birds and flowers. On a Friday I was her only visitor and we would do something like play a game, do a jigsaw or I would give her a manicure or other beauty treatment. Sometimes we would listen and sing to music, sometimes dance with me holding her hands and moving the wheelchair in time to the music.

I will always treasure all the time I had with my Mum, she was 95 and I feel so lucky to have had so much time with her in my life. Mum was always so appreciative and enjoyed and got joy from such simple things, her face would light up when she saw me arrive.

Mum stopped eating, she had been suffering terribly with gingivitis (bleeding and inflamed gums caused by bacteria in the mouth, caused by not having teeth cleaned!) I was doing thorough mouth care every time I went in,  a very good friend who is a Dentist had visited and told staff what they needed to do but it didn’t improve.

She was losing lots of weight and the GP told me that Mum was dying, which I sadly knew but it was still hard to hear. The GP told me this with Mum in the same room, I winched in pain for Mum being present to hear this. Hearing is the very last thing to go when somebody is very unwell and it was both unprofessional and clumsy of the GP to do this.

The next two days were the brightest Mum had been in weeks and I like to think it was a middle finger from her to the GP. We talked and laughed and enjoyed the Summer weather.

From there things went downhill though and I was spending most of every day by Mum’s side doing what I could to make sure she was comfortable.

It was a terrible struggle for me, as a nurse who has spoken up for so many patients over the years, making sure they had the care they deserved and were pain free to be having to do it for my own Mother.

My heart is incredibly heavy in the knowledge that the expertise of care that was needed was not given. Care Homes must not be afraid to use end of life medication to ensure comfort and peace for those in their care and their families. They must also ensure that carers are aware of the need for extra care to be given to palliative patients.

Mum passed away on the 26th of September, just over two weeks after her 95th Birthday. In the final week of her life I know, that Mum knew I was with her, she would still put an arm around my neck when I kissed her and also smile at me right up until the morning of the day she died.

I am finding that I am struggling more now than I did when she first died, the longer I go without being able to put my arms around her, the first Christmas, and now a year in which she has not lived but I am sure time will heal and I will find ways to keep busy and keep smiling as Mum would.

Elderly care, since I have been involved in some capacity, which is now 36 years (scarily) has never been what it should be. However I am increasingly upset and concerned when I visit patients who have had a stay in hospital and have not been got out of bed at all because there isn’t time. Short cuts are constantly being taken with some of the most vulnerable members of our society. It is, as it always has been the people who are least able to speak up for themselves but these people deserve respect and care just as the rest of us do.

They haven’t always been elderly, they have lived and worked, raised a family, travelled and some including my Mum been in a World War. They are people, someone’s Mother, Father, daughter or son.

The other big change is that after 11 years of volunteering with the charity Mudlarks I have for a number of reasons finished. I have enjoyed almost all my time doing things with and for the charity and the way it has grown over the time it has been running is amazing. I miss the team I worked with at the café and being part of that but will move onto pastures new, I am not sure which pastures yet but I am sure I will find something! I wish Mudlarks ongoing success, the café which I loved so much is moving to a new building shortly and will only improve I am sure.

So all that is left is for me to apologise for my sombre post, I hope I haven’t dampened your spirits too much. I know that my spirits will lift once I have my new goals and interests worked out.

In memory of my wonderful and incredible Mother, Peggy Margaret Bruton 1924-2019, never to be forgotten.

 

 

 

 

Spectrum of Misconception

Its that time of year again, time to share a very special message.

Spectrum of Misconception is our Social Enterprise, set up to give our son Zach the opportunity many of us take for granted, to experience work.

When we set up the enterprise we wanted to make it relevant to Zach and so we came up with an idea which as well as giving Zach work experience also educated people about autism.

Autism is extremely complicated and varies so much from person to person. How many times as a parent have I had someone tell me ‘oh yes, I know someone like that’?  I can tell you, it is many! Have I challenged everybody who has ever said it? No!

To explain the vast spectrum would be like unravelling a never ending ball of string because there are so many differences.

We wanted to bust some of the most commonly held myths about autism, to share messages which would raise awareness of autism, to let people know that not everybody who has autism comes from the same mould. The only thing most people with autism definitely have in common is the label.

Our Enterprise was entirely funded using Crowd Funding and the very generous support of dear friends. We feel a massive responsibility to make the enterprise a success and to keep it going, we hope that we can expand and offer more people who have autism and complex needs the chance to gain work experience.

How can you help?

You can order some of our wonderful Christmas Cards. The cards are unique. We asked a local artist Malini Croxon to illustrate them this year and she has really captured our concepts. Both illustrations carry subtle autism awareness messages related to the image and a festive greeting.

Zach’s role in the process is packing up orders and taking them to the post office where they are weighed and passed through to the staff behind the counter.

 

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This is a challenge for Zach but he is doing brilliantly at getting boxes ready, packing up the correct orders and in the Post Office. He is helped with all this by his wonderful support team.

We hope to receive your order, for us there is no more important message than to raise autism awareness and understanding.

Find us at http://www.spectrumofmisconception.com

 

 

And the weather looked so nice…

It’s a bright and sunny morning, blue skies and it should make me feel cheerful. We haven’t had too many of these lately.

Every morning Zach is collected by taxi, this has happened since he was 4 years old, that’s nearly 18 years ago now.

The taxi was originally needed because the schools weren’t within walking distance, when you have a child who has additional needs they don’t go to a local school, they go to the closest appropriate school which can be quite some distance.

We have had a variety of drivers and escorts. There is always an escort who is responsible for Zach’s welfare while he is in the taxi.

We have had some drivers and escorts who have totally got Zach, and plenty of others.

Because someone drives your son to and from school every day does not mean they understand autism or your son.

They see your child lashing out for what they think is no reason, what they don’t know is what happened before your non verbal child lashed out.

Imagine a day where everything seems wrong for somebody who the importance of everything being right is paramount.

The wrong breakfast, they weren’t the right porridge oats. They were smaller and a different colour. A different escort in the taxi, she didn’t know how to put the harness on and she smelt different. Your class supervisor wasn’t in the classroom today, she is always there and usually greets you with a big smile and high five, the person there today wasn’t smiling at all. There was nothing for lunch which you liked, your 1:1 tried to make you eat peas, don’t they know you don’t eat anything green. You had swimming in the afternoon and you got to the pool to find the pump was broken and you couldn’t go in, swimming is your favourite activity and you were really looking forward to it. It’s nearly home time and you are looking forward to getting home and just chilling out and pleasing yourself. Everyone else has left school and your taxi still hasn’t arrived. The taxi finally pulls into the school gates and it is a taxi driver who talks about you as though you are not there and when you are getting in to the taxi he speaks sharply to your 1:1 and you lash out, you have had a day of being told what to do, of changes which you don’t like or understand and this feels like the final straw. The only way you can let somebody know that your day has been terrible is your behaviour.

This is what having autism can be like. For the non verbal the inability to let somebody know you are struggling with all the changes to your day, that having food you don’t like put on a fork and held under your nose repulses you, the smell of the escort was really offensive to your nose, the different person in the class room upset you, you like smiley people and people who are warm and friendly, you love swimming, the pool was there, it had water in it, you just don’t understand why you were denied your favourite activity, you were hungry all morning after not eating your breakfast, being hungry  makes you feel grumpy, you wanted to go home and your taxi was late and then the driver raised his voice and you really don’t like people arguing or shouting.

This isn’t a real day but it easily could be and how some of the world perceive that lashing out.

We have all had days which don’t go well but we can usually talk about it through the day, understand why things are not as we hoped and express how it makes us feel.

This morning Zach’s escort who we all love and has a brilliant relationship with him was off work because she has had an operation. Obviously we all understand that she needs to recover but Zach doesn’t understand where she is.

Zach’s taxi driver recently changed, the driver we had for a long time has left. The current driver talks about Zach as though he isn’t there.

The car has changed, and the harness which is used is not the right one for this vehicle. The harness is made for a people carrier which is what Zach used to travel in to school. This makes it very difficult to do up the harness so usually the escort gets in the back with Zach and helps do it up.

I have tried talking to the driver about the harness being the wrong model for a car but he tells me that it isn’t. I have looked at the manufacturers website and it clearly states this harness must not be used in a car. I have let the Council know that Zach is being transported in a harness which is not only unsuitable but he would also be trapped in were the car to get shunted from behind.

This morning Zach became escalated while having the harness done up and the taxi driver told me Zach should be put into care.

It is hard to imagine feeling that you have the right to tell somebody else that their child should be put into care.

What does he think would happen if Zach was put into care? Does he think that because Zach was behind closed doors everything would be okay? That Zach would no longer feel anxious at change and all those things he can’t control?

The driver says he knows all about autism as he has driven a taxi for 15 years carrying young people to and from school.

It’s hard to know what to add to this post, I am pretty sure I don’t need to conclude with my feelings.

Autism never has a day off, the smallest changes can cause anxiety and panic. And I am really not keen on Zach’s current taxi driver.

 

 

Looking back, keep moving forward.

Saturday was miserable, rain, rain, and more rain. I decided to go into our loft and have a sort out, just the kind of job to be saved for a rainy day.

I found many things I had forgotten that we had, many of which should have been thrown away without actually ever making their way to the loft.

Anyway I started sorting, charity shop and bin.

I came across a file which was full of information about Zach going back to when he was first diagnosed with autism at 2 years 8 months.

I decided it was time to clear some of this stuff out, we just don’t need it anymore. I was looking through to make sure that I didn’t throw away anything which we may want to refer back to. What I read made memories come rushing back of some really difficult times, things which I knew were being done to my son and was powerless to stop.

Zach’s first school was a local Severe Learning Disability school. It was the choice! The only school available.

The nursery at this school was such a loving, nurturing environment, the staff were so professional and keen to help the children.

Things quickly changed when Zach left the nursery. We were investing a lot of money in PECS ‘Picture Exchange Communication System’ to help Zach to communicate. He was very quick to pick it up and extremely capable.

School didn’t seem to be using it with the exception of snack time, imagine if the only communication efforts you could make were to ask for food and drink. It is tokenistic at best.

Despite me working hard to have a good relationship with school I was frustrated that more was not being done.

Zach spent some time in the autism base where he seemed to be happy but when he left the base things very quickly went down hill at an amazingly fast speed.

We limped along, I looked at other schools, I wanted Zach to enjoy school and to learn, I didn’t feel that was happening. He would melt down almost every evening when he arrived home having been trying to hold it together all day.

I approached education about him moving school but was told the school were meeting his statemented needs, I didn’t feel they were.

I wished I hadn’t read some of this stuff on Saturday, the memories are some which I did not wish to revisit, but at the same time having watched the recent Panorama programme about the systemic abuse at Whorlton Hall in Durham it is so easy to see how those who have autism and complex needs end up being sectioned and sentenced to a life of frustration, anger and disappointment.

The document I found which hit me hardest was a report which was written following Zach coming home with marks and bruises on his torso, front and back and finger bruises on his inner arms. Zach was 10 years old then, he was a tiny boy at 10. The report made me feel heartbroken and intensely angry at the same time.

Zach’s crimes that day included trying to take instruments from a box in the music lesson, he was told to sit down, he did that for 30 minutes! That is a very long time for Zach and he then got up and returned to the instruments. After sitting for 30 minutes Zach deserved a massive reward, but no he was repeatedly told to sit down again and then someone held his school shirt to keep him on the chair. Staff seemed surprised that Zach’s reaction was that he began to aggress to staff. He had done what he was asked to do but that wasn’t enough, there was no positive reinforcement, no verbal praise just an expectation that he would continue to comply with no reward.

He was then restrained.

The day continued in a similar vein, reading it is hard, knowing that my boy was reaching out to staff at the school, trying to build relationships and all his efforts were rebuffed.

The day was full of sitting, assembly, music, then an achievement assembly. He was restrained again in achievement assembly after becoming unsettled. Allowed out into the playground where he wanted to take his school shirt off, he was repeatedly told he must wear his shirt, then allowed to take it off for 10 seconds and was then told to put it back on! All these mixed messages would confuse most people, imagine trying to comply when the message is so unclear.

He was then taken back into assembly and tried to take his shirt off again, was taken out again, then back in, then back out!

When the car crash of a day was at it’s end Zach was led to the transport by two staff who were restraining him.

At the end of the report it says that his mood had not been good all day….which was surely no surprise to anyone.

I still remember that day, he was happy to be home and went outside to the trampoline. It was a boiling hot day and he took his shirt off and I saw his little body marked and bruised and couldn’t quite believe what I was seeing.

We should have called the police, it should have gone straight to safe guarding but I phoned the school and was told by the Headteacher that Zach had, had a very difficult day….she was telling me.

The incident was heard at a County Council pre-safeguarding hearing. The Head Teacher was invited to explain, she apparently claimed all the injuries were inline with what you would expect when using that method of restraint. They accepted this despite it being totally inaccurate. Neither Zach or I were invited.

The next morning the transport arrived and I opened the door to take Zach down to it and he shot off as fast as he could, running up the road away from the school bus. I kept him at home, I just couldn’t bear to put him through another day at that school.

Zach did go back to school after this incident but not for long, we were fortunately near the end of term and in September the Head temporarily excluded him very shortly after his return, she eventually permanently excluded him, much to my relief.

I am probably a nightmare parent, I will fight for my son to receive the correct support, in the best environment possible. I will aim high for him to live a happy life where he is treated with respect and given the dignity we all deserve.

I knew that the way the school had excluded Zach was unlawful, I knew that they hadn’t been complying with his statement and I knew that they hadn’t followed correct procedures to try to help Zach within the school.

There were autism experts available to give the school guidance but the school would not reach out to those experts. The school was using Teaching Assistants as teachers, young people straight out of University. The school just didn’t understand autism and complex needs or that functional assessments and positive rewards are needed.

The school had a battle of wills going on with a 10 year old boy, they wanted to control Zach and he didn’t want them to. They took away his only method of communication, his PECS book because they said he was using it to gain control!

Can you imagine having your voice taken away as there was a danger you might ask for what you wanted?

Zach did not learn anything positive at that school, the wonderful work the Nursery team put in was quickly forgotten. What Zach learnt were great avoidance techniques, how to get out of doing something he didn’t want to do.

The school sent so many mixed messages it must have been hard to understand what it was that he was actually meant to be doing.

We appealed against the exclusion, which went before an independent panel. The panel found the exclusion unlawful, they found the school had failed Zach in many areas while he attended. We asked that he was not reinstated even if the extra support was put in place.

Since Zach’s exclusion in 2008 a number of other young people have been excluded from the same school, all have autism and complex needs. The school clearly learned nothing from failing Zach, all these young people deserved to be listened to, to be allowed to communicate and grow and learn.

I suppose I felt the need to write this post after watching the panorama programme as the behaviour of the staff at this school was inflammatory to Zach. The school totally and utterly refused to believe that they were in anyway implicated in the way in which Zach behaved.

I have kept these records, they are a reminder of why we fight with everything we have to make sure that Zach is continuing to learn, to live a good and happy life and allowed to express himself.

Positive Behaviour Support is teaching Zach better ways to communicate his likes and dislikes and to give him choice. Zach’s team fully recognise that he is intelligent and needs to continue to learn and acquire new skills as we all do, we just need to be given the right opportunities to allow that to happen.

 

 

Change needs to come, now!

It seems an age since I added anything to my blog, there are many reason’s for that and  the main reason is that I never seem to get to sit down for long enough to have the time.

Anyway I am grabbing an hour or so right now, before it goes missing!

It doesn’t seem long ago that we were all aghast and disgusted by the treatment of vulnerable adults who have learning disabilities and autism at Winterbourne View and this week we saw that, despite the government saying things would change, it is clear that there is still a long way to go.

The Panorama program on Wednesday evening showed Whorlton Hall in Durham. People who had been sectioned, put in this secure unit supposedly for their benefit were being repeatedly abused both physically, verbally and emotionally by Care and Nursing staff.

It was a tough watch for anyone, the vile employees who seemed to get a kick out of exerting power over those who could do nothing about it and could probably not reiterate it to their family and those in a position to do anything about it, was so shocking. Some of the staff, in-fact all the staff in the documentary showed no regard for those in their cares dignity, feelings or did anything which may help their circumstances to improve.

These units are meant to be for those in crisis not for people to live in for years and months but they do, I am guessing part of the reason for that is that their psychiatrist and treatment team see little improvement which is hardly surprising.

It would be very interesting to see the application forms of those staff shown in the documentary, what experience they were bringing to the job. It was highlighted that many of the staff were agency, although some agency staff are very good there is a lack of consistency which is vital to those who have autism and LD (learning disabilities) and you never actually know how good agency staff are until they arrive. Often they are dead wood, floating around just making up the numbers. In that sort of environment this is worth nothing.

I would never suggest that working with people who have challenging behaviour and autism is an easy job, it takes an incredibly special sort of person who can go back to work smiling and positive day after day when progress can be scarce and slow, aggression towards them is high and the hours are long and anti social.

These special people need paying for the work they are doing, they need to receive a salary which recognises the difficulty and responsibility of their job, there needs to be recognition of them doing a job that very few can do well and stick with.

If you put someone in a job like this who does not have the tools which they need to make a difference the outcomes should be obvious, Panorama showed this and some. Not only were the people clearly not able to apply tools which had been developed to de-escalate and calm people they were clearly doing whatever they could to cause distress and high intensity escalations. These people were not fit to work in a job which had contact with any other living being let alone the most vulnerable people.

Something which I find equally disturbing is that there must have been staff at the hospital who were trying to do a good job and probably cared very much about the patients but they must have been aware of the abuse and emotional torture which the patients were being put through which makes them complicit in my opinion. 

Last year Hertfordshire held a Conference which was informing providers and those working with people who have autism and associated disabilities about Positive Behaviour Support.

The overall aim of Positive Behaviour Support (PBS) is to improve the quality of a person’s life and that of the people around them. This includes children, young people adults as well as older people.

Positive Behaviour Support provides individualised support for a person, their family and friends to help people lead a meaningful life and learn new skills without unnecessary restrictions.

It helps people to remain in their own homes, communities and close to the people that they love.

Positive Behaviour Support is based on the principles of ABA (applied behaviour analysis). It is as the name suggests a positive intervention, it has fantastic outcomes and it can change the way people live their lives.

Following the program I contacted Zoe and Danny who I worked on the Conference with and asked if we could kickstart the Counties drive with PBS. Our aim is to have a Hertfordshire Positive Behaviour Support Community both for Professionals and for parents and carers.

I got an immediate response and we are meeting next week to make plans.

If we can get the support right for people who have learning disabilities and autism and complex needs there is far less chance of them being sectioned and ending up in a ATU.

Imagine in 2019 people are still being sectioned for having a disability, totally shocking.

There are various petitions going around after Panorama demanding change. If you are someone who signs petitions or someone who thinks they are a waste of time please take a few minutes to go to Change.org and search ‘End the abuse of autistic people & people with a learning disability in inpatient units‘. If you saw the program I am sure you will feel compelled to sign.

Local government need to commission more expert services who have a deep understanding of autism and related learning disabilities. The cost will be greater short term but the gain most importantly will change lives and secondly long term with financially pay off.

The cost of sending people who have done nothing wrong other than have a disability and needs which are not being understood is huge, thousands of pounds a week and that week turns into months which can then turn into years.

A local home which is run by a national charity and should and could be a nice place to live has a constant stream of agency staff who neither seem to be bothered or care about the residents, the outcome of this should be obvious to anyone and everyone.

When asked about this the regional manager said there was a recruitment problem!

Good staff need to be valued, invested in and applauded for the difference they are making, offered career progression and on the job opportunities to further their relevant studies and training.

None of this is rocket science.

Parents will drive themselves to a nervous wreck to keep their children safe, then their adult children safe because there is so much distrust of the quality of care providers.

We need places in local communities for people who have autism and complex needs to live, places which are suitable and well thought out.

We need to ensure that at the same time as working to bring people back from Assessment and Treatment Units there is also work going on to stop people going in the first place.

Failure is not an option for these people because failure can end up looking like Whorlton Hall.

The Government, local authorities, people who work with vulnerable adults all have a massive responsibility. Change needs to come and fast.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Challenging Behaviour Foundation

I spent most of last week on a training course with the Challenging Behaviour Foundation in Chatham, Kent.

The Foundation was set up by a wonderful parent whose 9 year old son was sent 270 miles to a 52 week a year residential school because those involved in his care and education were struggling.

The new school which Vivien’s son, Daniel was sent to were using what we would now call ‘Positive Behaviour Support’ and it was quickly realised that her 9 year old shouldn’t have to be 270 miles away from his home, this could be done anywhere.

Vivien set up the Challenging Behaviour Foundation in 1997. The purpose of the charity was and remains to be ensuring that people who have similar needs to Daniel and their families can access information and support, in the right place and at the right time.

The Charity started with no resources other than a driven Mother (the best resource!).The Charity has grown and is known across the country for the good work  they do, both advising and training professionals and helping and supporting parents to achieve what is right for their children.

To find out more about The Challenging Behaviour Foundation please go to their website https://www.challengingbehaviour.org.uk/

The training course I was on, was so that I can become a Community Champion for the Challenging Behaviour Foundation in Hertfordshire.

The course was challenging itself, not least because I had to go across the Dartford Bridge and back under the tunnel each day which gave me plenty of time to ponder the stories from other parents and a family trainer which were so horrifying to hear.

The consequences when things go badly wrong for our children are those which will change and impact lives forever.

Why do things go wrong? ‘There is always a reason for behaviour’ Tony Osgood who is a Senior Lecturer in Intellectual Disabilities at Tizzard University told a room of parents when he was delivering a talk at the Partners in Policymaking Course I was lucky enough to attend in 2009.

We heard lots of speakers over the 10 valuable months the course ran, Tony Osgood was one of the speakers that really resonated with me. It was so enlightening to hear somebody talk about positive approaches which could be taken to avert behaviours from becoming challenging and change them into something more acceptable.

Why doesn’t every school, Social Worker, Youth Worker, GP, School Nurse, absolutely everyone who is in a position which may mean they come into contact with a young person or adult who has complex needs and behaviour which challenges have a access to a Behavioural Psychologist they can make referrals to, just imagine the difference it could make to so many lives!

People who have behaviour which challenges adopt those behaviours because a need is not being met, very often that need is communication. Those in a position to help those people can either find ways to meet their needs or ignore the behaviour until there comes a point when they can no longer ignore it as people are being hurt, put in danger and then things start to go horribly wrong.

There is no shame in asking for help! There is no shame in admitting that a situation you find yourself and your child in is just not safe anymore.

There is shame however in Professionals not asking for help, for professionals to do what they have always done, which will sadly mean they get what they always got (and so did the children and families they were meant to be supporting).

There is shame for services so closely guarding their budget that they are not providing the correct support that some of our children need. I totally accept that services are facing cuts year on year and that is tough, the problem is that things will never get better unless services look forward. Something which may cost them a lot of money in the coming years may save them thousands in the long term. And putting the financial aspect aside will massively change peoples lives, which is after all the most important and valid argument anyone could have.

The Challenging Behaviour Foundation offers a wide and varied selection of resources which can be found on their website. They also offer training for parents and professionals. There is a newsletter and parents can also email questions which other parents can answer to help solve problems. They have family support workers who work with families and offer good advice.

I am now a fully trained Challenging Behaviour Foundation Champion, I am proud to fly their flag! I will be going to local events to let people know who are in a similar situation to us that there is an organisation which will help them and signpost them to the wonderful staff at the CBF.

The Challenging Behaviour Foundation have been shortlisted for funding from the National lottery’s ‘People’s Projects’. If you have a few minutes please vote for them, they stand to get a £50,000 grant which will help them deliver vital training to families.

Please find information below and vote, vote, vote!

Our project Learning Disabilities – Supporting Families has been shortlisted for funding from National Lottery’s the People’s Projects.

If we got this funding we would run challenging behaviour workshops for families throughout the Meridian East region. The workshops have already been delivered to many families, who have told us how helpful they were. Now we want to reach more families who we know are struggling or in crisis.

Our workshops will give around 500 of families the skills and knowledge to understand the reasons for the behaviour, and how to prevent it or respond to it safely.  They really do make a long term change to the person and their whole family’s lives.

Please vote for Learning Disabilities – Supporting Families now, to make a difference to families’ lives.

Voting is open from 1st April until 15th April. You can vote from anywhere in the country and you can vote in more than one region, but you can only vote for one project per region.