thezachproject

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.

Attitude is either the lock or the key.

We are at that time of the year again when our social enterprise, Spectrum of Misconception becomes busy with people buying our unique Christmas cards.

What makes them unique?

We set up the enterprise to fill a gap in young people who have autism and complex needs lives. That gap is experience of work. Despite searching and approaching charities we couldn’t find anyone who was willing to allow my son, Zach to experience some experience of work. Granted we don’t all like work, but we should have the chance to come to that conclusion.

We wanted to help people understand autism and the complexities of the spectrum a little better through our enterprise.

This is how Spectrum of Misconception came about, we now have a small team of young people who are involved, experiencing work and they all seem to enjoy it.

What do they do? When your orders come in they are allocated through the team, they then pick the correct cards from their stock, pack them and either post or deliver them. They make a fine job of it. Sometimes the wait in the post office is a bit much for any of us and they have managed this admirably.

We are lucky to have worked with some fantastic artists since we started and the artist we are working with now, Leila Nabih never fails to deliver.

We are probably an artists most difficult customers, we give them a concept which we would like to be conveyed through illustration. We have had some beautiful and clever cards over the last 4 years and this year is no exception.

This year we want to share our concepts with you.

Santa’s Magic Key

Our message behind the illustration for this Christmas Card is that

‘Attitude is either the lock or the key’

We know many of the people on our Spectrum Team are highly perceptive.

Most of our team are non-verbal and so are excellent at picking up how someone is feeling be it happy, sad, stressed, angry, disinterested, the list could go on. They just know.

My son Zach picks up instantly whether someone likes him or does not.

If someone is stressed or in a bad mood. He, like so many other people who have autism and complex needs loves to be with people who are smiling, laughing, happy and include him.

Rapport is something which is sometimes instant or can need working at, but good rapport is like potted gold.

We love the message, someone’s attitude can be the make or break of a good day, week, or year.

Be the person whose attitude unlocks people’s potential in every aspect of life.

We are all like Zach really.

Find our website at http://www.spectrumofmisconception.com and share a little autism awareness with your Christmas greeting this year.

We are live!

It has been a really strange year, I am sure I do not need to tell you that! Many of my friends have undertaken big projects around the home, decorating, knocking down walls and transforming the garden.

I haven’t done any of that, however our house has been full of shiny, sparkly Christmas bits since early July.

I decided to start making Christmas wreaths earlier this year, with the idea that I would accumulate some stock to sell at all the sales I had in my diary close to the festive period.

Due to the current situation all those dates have been cancelled, however the wreaths are selling very well after sharing on social media. All the money from them goes straight in to the Spectrum of Misconception bank account.

Zach delivering a wreath to one of our lovely customers, Pia.

Spectrum of Misconception is a social enterprise which was established 3 years ago with the aim of giving Zach and other young adults who have autism and complex needs work experience.

Something which it is highly likely they would never have the opportunity to do anywhere else.

Our mission is to raise autism awareness and to help people understand the complexities of autism. It is such a massive spectrum, people have autism but that is by no means all they have. They have their own characters as we all do and I think this is sometimes forgotten.

This year, I am so excited to have three young adults who have autism and complex needs joining Zach at the enterprise.

I am very proud to introduce our team!

It is what Cormac and I hoped for from the beginning, and we hope that Jack, Donald and Akintade are just the beginning of our expansion.

I also thrilled with our products for Christmas which can be found on our website http://www.spectrumofmisconception.com.

We have stunning new Christmas cards, illustrated by Leila Nabih who is a very talented artist living in Hertford.

Leila was so interested in the concepts which we suggested for the cards and worked really hard to depict them. We just love her illustrations and hope you do too.

The concept for this card is that what one person finds delight in, that same situation may make another person feel incredibly anxious.

Many people who have autism have sensory processing difficulties and this card certainly illustrates what looks magical may also be a frightening experience for somebody else.

The concept for this card was that we don’t all fit into the same size box. We shouldn’t feel less than anyone else if we don’t fit in, it is what makes us stand out.

Many people who have autism attempt to conform to what is considered ‘normal’ this can cause them extreme stress and anxiety.

The concept for this card was to embrace difference. We are all the same but very different.

Another artist we have been lucky enough to work with is Molly Sidebottom. Again we discussed the concepts with her and then she came up with some great ideas which look fantastic on our gift wrap and tags and the new products we have for sale this year.

Mind the Gap is a store at Hertford North Station, the family who run it could not be more caring, they also do a great line in banter.

Their business has been hit hard by lockdown as so many previous commuters are now working from home. They have adapted to the situation by selling more convenience items.

They are once again selling our cards which is really kind of them. Zach dropped them off one evening with Joel and Shauna.

Replenish_Refill is a zero waste shop in Hertford. Its on Railway Street where the old Mudlarks cafe was.

You take your containers to refill food, herbs, spices, tea. coffee, toiletries and cleaning products. They also have a great supply of Lifestyle and home products in store, along with bits which will make fantastic gifts. They stock artisan baked Sourdough breads (which is very yummy) and other baked goodies too.

They will have one of my wreaths in their window when its time to get the Christmas bits up so please keep a look out for it.

The team are already packing up orders and sending them out. It may not seem like much but for them it is a great achievement and something they and we are really proud of.

I hope you will enjoy visiting our website and find something that you like.

Spectrum of Misconception is working hard to keep moving forward, raising Autism awareness and helping people understand the complexities of autism.

http://www.spectrumofmisconception.com

Be the reason someone smiles today…

The Lovely Laura Kenny in our t-shirt, she is always smiling x

I am ashamed that this is my first post of 2021! I naturally have some excuses as to why this is….

Last September I was lucky to be accepted on BILD’s (British Institute for Learning Disabilities) Positive Behaviour Support Certificate Course. It was the first time that parents and non professionals had been invited to take part and I saw it as a great opportunity.

To find out more about BILD go to http://www.bild.org.uk

I have always had an interest in Human Sciences, Zach is supported using a combination of ABA (Applied Behaviour Analysis) and PBS and I am on the Positive Behaviour Support Community of Practice Steering Group for Hertfordshire which all seemed very good reasons to take up the challenge.

Unfortunately the course start date coincided with the busiest time of the year for our enterprise, Spectrum of Misconception. We had two new and very welcome team members, Aki and Donald and so there was greater need to be well organised and keep on top of our orders.

I did find it pretty stressful doing the course up until Christmas, splitting my time between it, the Enterprise, Christmas preparation and the usual day to day chores made me more snappy than usual! However since Christmas I have been able to relax more and enjoy absorbing the information and understanding more about why things are done the way they are and the massive difference that PBS can make.

I was invited by BILD to join the PBS Alliance Communities group, it is fascinating and inspiring to hear what is being done around the UK to ensure that PBS is embedded in support workers practice.

It is also alarming to know that abuse and mistreatment is still happening all these years on from Winterbourne View, something which although it happened in 2011 the residents from the period will still be experiencing PTSD and live with behaviours associated from their vile mistreatment for many years to come, maybe, sadly forever. A school in Wales had a brave whistle blower come forward, reporting mistreatment and abusive practice at Ty Coryton link: bbc.co.uk/news/uk-wales-57404837.

I was asked to present at one of BILDS online Webinars, the title being ‘Mum knows Best’, just don’t tell John that. It was difficult to pack all that needed to be shared about Zach’s journey into a short period of time but I hope I managed to convey how we have turned around what was an awful and bleak situation into something which is wonderfully positive and evidence that with the right support and attitude things can turn around and improve to give a life that is rewarding, full of quality and happiness.

Don’t misunderstand me, it will never be easy. We have had a bumpy ride but my goodness, how my boy has flown with the right people and a consistent measured approach supporting him.

As a result of all my studying it was hard to get on top of things with Spectrum of Misconception. Our aim for this year was to have products which we could sell all year round. The team really enjoy doing the packing up, delivering and posting and sometimes request to do it even when we have no orders.

Leila Nabih, a local illustrator who we love working with did some stunning designs for us, which we have used for gift cards, wrap and household goods. We discovered Wonky Candles, they are a family run business who make candles and wax melts. Both son’s Tom and PJ have autism and complex disabilities and we wanted to sell their wax melts as we feel such affinity with them and they smell amazing.

We missed World Autism Day this year, there was just too much going on for Cormac and I to promote and put the effort in which we needed to, to make it a success but we hope that we made up for that with our campaign for Learning Disability Week which was in June.

We are always looking for quotes which jump out at us and give us a concept which we can work with. One which just did that was ‘Be the reason someone smiles today’. Although I am thinking of Zach in relation to this statement I could be thinking of almost anyone. Zach is incredibly perceptive and if his staff are happy, bubbly and fun he will smile all day. A smile is a universal language and needs no words, we all know what it means.

The theme for Mencaps Learning Disability Week was ‘Friends and relationships’ so we asked our friends and families to send virtual ‘Hugs from Home’ via video to people that they love and have missed during lockdown. We had the most wonderful videos and photographs to share on instagram and facebook.

Leila designed us some great t-shirts with our message on, just seeing them makes me smile! Laura Kenny who is incredibly busy getting ready for a very different Olympics to the ones she is used to did us a ‘Hug from Home’ video and she and Jason also modelled the t-shirts for us.

Our great models, George, Mr Smiles and Jason Kenny all looking good!

She is such a lovely warm person, always smiling and has time for everyone. Please give her and Jason a cheer at the Olympics, they will certainly be getting a massive cheer from the Spectrum Team!

So I feel a weight has lifted from my shoulders, my blog is live again and I hope you enjoy reading it.

Please take a look at our website, we have items which will make great gifts. http://www.spectrumofmisconception.com

Until the next one 🙂

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’!

World Autism Awareness Day 2nd April

Spectrum of Misconception commissioned Dublin based artist Shauna Harrison to design a T-Shirt for World Autism Awareness Day on 2nd April 2020.

We gave her the message which we wanted to send on that day, its a bold message, loud and proud.

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We know that with the right support everyone can make steps forward and achieve and its is really important to me that people are aware of this.

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At Zach’s first school which was the local SLD establishment the Headteacher just didn’t seem to recognise that given the right tools everyone can achieve.

They had one approach, which they didn’t always implement but that’s another story.

For the pupils who didn’t respond to that approach there was no alternative, because they had autism no thought or consideration was given to their feelings, confidence and self esteem.

If they became angry or upset as a result of being a spectator rather than a participant, they were labelled as being disruptive, challenging and difficult.

The gradual wearing down process continued until the pupil exploded and then there was no going back!

I can still remember the Head Teachers expression when I told her that Zach was very intelligent, she looked astonished and then said that everyone thought their child was intelligent in her well practised and over used way.

My rationale for not contesting this statement was that I realised that there was absolutely no point in rationalising with someone who never thought she was wrong.

I had expended lots of energy trying to get the school to be more inclusive in the way they taught and communicated.

Imagine having to expend energy trying to persuade a Severe Learning Disability School to be inclusive.

Did the school learn from their mistakes?

No, they blamed the pupil, the parents and anyone other than themselves. They seemed to think they were doing us a favour by allowing our unteachable children to attend, they weren’t going to learn anything but they might get the occasional pat on the head.

Our T-Shirt message is to let the World know that they shouldn’t and mustn’t write people who have autism off.

It’s a dream I accept, that person centred planning will become just that, and there will be needs assessments rather than resource assessments.

That each unique person will be given support which is measured, adapted to meet their needs and has really positive outcomes.

Positive outcomes mean the person is happier, less anxious, and more willing to work with the support that has helped them achieve.

The long term benefits are massive for the person, their family, the system and the exchequer.

I hope that you would like to share our message on the 2nd April, the designs are wonderful and colourful. Great to wear anyday, not just the 2nd April!

Please follow the link to order your T-Shirt.

All your orders will be packed up and posted by Jack or Zach who have autism and complex needs because they can and they will.

http://www.spectrumofmisconception.com

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.