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!

th superhero

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.

th hair

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.

OIP pjs

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.

OIPTM6FHLMN fam photo

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.