It’s been busy!

One of the things my blog is meant to be about is life, so it is a bit of nuisance when life gets in the way and there aren’t the hours in the day to do some writing!

The last couple of months have been a struggle.  My poor Mum had a nasty fall, resulting in broken bones and a miserable hospital stay.

As a student nurse the ‘Activities of Daily Living’ were what was drummed into us and the importance of ensuring that these needs were met during a hospital stay. It was hard to witness the lack of personal care and the malaise shown towards patients who were elderly. Modern medicine is great but if we are to keep people living for so much longer we surely need to offer services that reflect the interventions used to achieve this. Life must have value to and quality. We cannot treat people as though they are no longer important once they reach a certain age.

Mum is now in a nursing home and my Dad still at home in their flat. They have been married for 69 years and it seems very sad so I am spending a lot of time beetling between them and trying to ensure they see plenty of each other.

While all this has been going on we have had Zach’s 21st Birthday Party. It was so great to see so many people who have been such a big part of our journey all in one place. The look on Zach’s face as more and more people he cares about arrived was a picture. Thanks so much to everyone for coming, you are all fabulous!

 

There has also been plenty of work going on with the ‘Spectrum of Misconception’. We cannot thank you all enough for your generosity and support with our crowd funding. We have the first illustrations for our autism myth busting cards and we also have a great logo and a Christmas card.

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Our logo is based on the triad of impairments which are often referred to in relation to the autistic spectrum.

Triad of Impairment is used to describe the main features of autism. These are social interaction, Communication and language and rigidity of thinking.

The triad of impairment will tell you all about the most negative aspects someone who has autism may have. I am sure I don’t need to explain the meaning of our logo!

We are now working hard to get the Christmas card out in a timely manner so that it isn’t too late for those who want to buy it. I know some people are incredibly organised and buy cards early so  I can’t bank on everyone being like me and buying, writing and posting my cards on the last day of posting.

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Our Christmas Autism Awareness message is….Autism comes in all shapes and sizes! It will be on the inside left cover, so subtle but lets hope the message hits home.

We have all we need for the packaging so can post cards out to online orders. All our packaging and products will be environmentally friendly and recyclable.

Our Christmas card is a beautiful design which has a very subtle autism awareness message. We wanted our card to be able to sit happily alongside others whilst raising awareness at the same time. I hope you will love it as much as I do.

We have a face book page and have been working on the website. I am pretty much totally useless with anything on a computer so am waiting for expert support to make them look as interesting and professional as we want them to be.

Please keep an eye out for our Christmas Card design and if you would like to order some let me know, I promise it will be ready as soon as possible.

The website (when it goes live) is at http://www.spectrumofmisconception.com and the facebook page is Spectrum of Misconception.

I look forward to hearing from you (fingers crossed!) 🙂

 

 

 

 

 

Fingers crossed for humanness!

Work… it’s one of those things that we often don’t really feel like doing.  I am a Community Nurse and I often don’t feel like going to work but once I am out there visiting patients I am fine, I enjoy my job. I have been a nurse for over 25 years and it is part of my identity and who I am.

Freud said ‘Love and work… work and love, that’s all there is.’ And ‘Love and work are the cornerstones of our humanness.’

Imagine if you never got the chance to work, there was never going to be a job for you.

This is the case for many adults who have learning disabilities. In 2015 just 6% of adults who have learning disabilities were in paid employment.

Many people who have LD are very capable of work and would enjoy a job.

Having a learning disability means you are marginalised by society. Despite it being 2018 the world is still not inclusive.

When you think about jobs, the majority will have a social aspect to them. You are part of a team and you are valued by the rest of the team. This helps our self esteem, we all like to feel useful and appreciated. A job helps prevent social isolation.  In turn ( I do hear some of you saying your job is really bad for your stress levels, I promise!) this helps our mental health and boosts our feelings of self worth. All very important for over all wellbeing.

Despite Zach being non verbal, having autism and complex needs he could work with the right support.

A few weeks ago we decided that the exercise equipment we had at thezachproject was no longer needed, he regularly goes to the local gym which is far better for him than using the equipment on his own. We gave the equipment away and were left with an empty room.

I had a few thoughts about what we could do with the room but none of them were very inspirational. I asked the Beam team if they had any ideas.

Cormac Duffy who is the operations manager came back to me with the idea of a Social Enterprise so that Zach had the opportunity to contribute to the world of work and once set up we could get other young people involved.

To say I was excited is an under statement, poor Cormac had to spend an hour in the car with me rambling on about what we might do. I then sent a mass of texts with what were probably pretty useless ideas! I was buzzing.

I spoke to a friends and family asking if they had any ideas and began to piece together what seemed like a plan which has a great USP!

We now have the idea for Zach’s social enterprise, it is something which he can be totally involved in and will enjoy doing. It will play to his strengths and abilities.

You may wonder what Zach will gain from having a job. His life at the moment looks quite busy with learning life skills, leisure activities and pub lunches however we are all entitled to dignity and dignity comes with work, being included and contributing to the working world.

We have much work to be done before the project is ready to roll, business plans, decisions about what the product will look like and where we will sell it but we are already planning and on the journey.

We need a start up fund and if you feel able to contribute we would be very grateful indeed. We want our product to be as good as any out there, if not better! We need a fund to achieve this.

Please follow the link if you feel inspired to contribute 🙂

JUSTGIVING.COM and search Rachel Saysell

 

Thank you xxx

 

 

 

What is the 2nd April all about?

April is World Autism Awareness Month. The United Nations deemed April 2nd World Autism Awareness Day 11 years ago.

The idea being to raise awareness, they committed to promotion of full participation of all people who have autism and ensuring they have the needed support to be able to exercise their rights and fundamental freedoms.

Sounds good so far.

I wonder however, what this is supposed to mean to the thousands of people who have autism and their families who struggle every day to meet the needs of someone they love who has autism and all the complex issues which come with it.

I remember thinking when I was maybe less cynical it was a good thing but how has it changed people’s perception and what difference does it actually make, how far have we come since the first World Autism Awareness Day?

 I am autism weary. It was never going to be an easy journey but with a massive increase in the prevalence of autism, 1 in 150 and despite being 11 years on not very much seems to have changed.

World Autism Day has somehow become a celebration of autism, but as a friend asked ‘why would we celebrate autism’. I don’t see many friends who have a child who has autism throwing a party. Autism is at best difficult and at worst wrecks families and lives.

Over the last 11 years there has been far more in the media regarding autism. Many of the public have an inkling about the triad of impairments but have little understanding that not everybody with autism is the same.

It is so rare for the media to share anything other than moderate autism. The exception is the horror stories of Winterbourne View and Mendip House to name two. Other than these grim headlines people who have severe autism, behaviour that challenges and complex needs are never mentioned.

What we can do to stop the vile abuse of power and violence to those very vulnerable people living in such establishments which I am sure sadly still exist, is let people know more about them and stop them leaving the communities they grew up in and make them visible.

If there is something in the news or on television friends and family eagerly ask if we have watched it. I have to say I see enough autism in my life.

The A Word which is a drama recently shown on the BBC portrays a cute little boy who has autism. All our children were cute when they were young, autism or not. What about people who are adults who have autism?!

Children grow up and it may come as a shock but adults do have autism, you just don’t see them very often!

 Channel 4 recently showed a program called ‘Are you Autistic’ which was hosted by young ambassadors of the charity Ambitious about Autism. I’m not suggesting life is easy for these young people but they are all able to communicate and indeed present a television program.

I emailed Channel 4, I applauded them for airing a program about autism but I explained that they were just reinforcing public perception of what autism is.

Their response was that autism is such a wide issue and they couldn’t possibly cover every aspect which was the reason they chose to cover this particular aspect.

My response (I do always like to have the last word, as my poor husband knows only too well) was ‘What is massively disappointing and sadly predictable with all the media coverage of autism is that despite it being intricate with so many different avenues to discuss it is always the same aspects which are shown and discussed.

I hope that Channel 4 will be brave enough to make a program which is not just a reinforcement of what is already the majority of the public’s perception of autism’

I don’t expect they will.

How about World Autism Awareness Day instead of encouraging people to change the colour of their lightbulbs (which is never going to bring about change! Who even thought of that?!) sharing facts and figures about autism over the month of April.

Engaging with broadcasters and media who are willing to bring something different to the table and share with the public what autism at both ends (and in the middle) of the spectrum look like.

The more complex aspects of autism, perpetual anxiety, the difficulties with transition, the lack of suitable services, gut problems, what happens to people when they leave school and have nowhere to go to continue to learn, lack of peer groups, social isolation the list is endless.

What can be done to help people who have autism and are struggling in a public place, why getting out and about is as important for people who have autism as any of us, what can be done to make it easier to do this.

The Equality Act, Disability discrimination, the Care Act, the Autism Act and all the other things written in law which are ignored far too frequently. Empower those who have autism, parents and carers!

Engage with retailers, food chains, employers, towns and cities to make them more autism friendly. Ask sports centres, clubs and recreational facilities to provide inclusive activities. To make reasonable adjustment without families and carers feeling side lined and excluded.

World Autism Day and month should not be about celebration, celebrating autism is something of an oxymoron to me but should be about encouraging change and helping those who have autism have a life which we are all at ease with.

 

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Zach’s fingers are crossed for change and progress!

 

 

 

 

 

 

 

 

Planning ahead.

I haven’t posted for some time, I have had plenty to post about but it is more of the same, brushes with the law, the public intervening when Zach escalates in public. I don’t want to keep repeating how tricky it is accessing the community for adults who have complex needs until I have something positive to report!

I am in Manchester! A few weeks ago the Challenging Behaviour Foundation informed readers about a conference here, it is for those living with or working with learning disabilities and it is called ‘Fulfilling Potential and Supporting Better Lives’. The CBF were offering 5 complimentary tickets to the conference and very kindly gave me one.

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Fair to say, I’m not here for the view!

It feels like the right time for me to come to a conference about this. One of my goals this year is to make some headway with setting up a Transition House. The purpose of this would be to start the process of Zach beginning to start transitioning to what his life will be in the future, a life where he has independence from his parents.

Initially Zach would just visit for a few hours at a time to build up familiarity and explore the house and hopefully feel comfortable there. We would gradually build up the amount of time he spends there. Transitioning is especially difficult for people who have autism, they upset expectations and routine and therefore cause extra anxiety.

Zach will always need 24 hour a day support but at home although he does a little to help he is pretty much the King and John and I are his minions! In the Transition House there will be expectations that he will help with the running of the home which will definitely come as something of a shock 😮

At the moment Hertfordshire doesn’t have anything like this to my knowledge but I hope that they will be receptive to the idea.

Tomorrow there should be a wealth of  information about other such projects which have been successful and I really hope to go home with fresh ideas and confidence that this is something I can do!

It seems bizarre that I am here in Manchester to try to garner some ideas for Zach’s future when I am already worried about how he will cope without me at home tonight, and how I will cope not knowing how he is coping!

Fortunately John is on hand and is hopefully putting the finishing touches to Zach’s dinner at this precise moment!

I went for a wander to check out where the Conference is being held and as I put my hand in my pocket felt a slinky and a scoobie string, it made me smile! Anyone who knows Zach will know these are synonymous with him 🙂

 

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 Manchester is nothing, I’d go to the moon for Zach! xx

 

 

 

 

 

 

(Not quite) Back on the chain gang!

Once upon a time in a life miles away from this one I was a cyclist. I grew up in a family of cyclists, six of us went out every Sunday almost without fail.

My parents wanted us to have a sport we could do as a family, it was a toss up between sailing and cycling and as they had both been cyclists before children arrived cycling won the toss.

Charlotte and I were very young, Charlotte was in a little child seat  on the back of the tandem with my Dad and Jo, I was on the tandem with my Mum while Sophie was on her own bike. As we all grew up there were various other combinations until we were all on our own bikes.

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Cycling was something which we did but when I was very young I am not altogether sure I particularly liked it! It seemed that we would go out for miles, meet other cyclists who my parents then seemed to spend forever chatting to and we went in all weathers except torrential rain. Charlotte and I secretly expressed our pleasure to one another when we were lucky enough to get a rainy Sunday!  Clothes were nothing like the kit cyclists wear today, we went out bundled up in itchy Arran sweaters and about three pairs of socks…it isn’t sounding like too much fun is it?!

Once Charlotte was four we could visit Youth Hostels which was lots of fun, we met other families at the hostels. One family I remain in contact with to this day. We went on to go on a number of cycling holidays with them and for many years spent Boxing and New Years Day with them, now they were fun times.

The anticipation before reaching the hostel was always great, wondering what it would be like and we stayed in hostels of all shapes and sizes, some were certainly nicer than others. Some had a Warden who gave us a warm welcome and the hostel at Houghton Mill had a Warden who my Mum always ended up arguing with!

I am not sure quite when my absolute love of cycling began but from about the age of 12 I like my sisters and parents, was hooked. I did enjoy other sports too, Cross Country running, swimming, netball and gymnastics but cycling was always the priority.

All my sisters and I raced with varying degrees of success, Sophie was very good at time trialing when she was a school girl and junior, Jo was doing very well on the track when she very sadly died suddenly at 18, Charlotte was a great all rounder and she could sit on almost anyone’s wheel.

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Me, well I never really had that need to succeed, I was fine in training and could grit my teeth and sit on for miles but when it came to racing when the going got tough the tough got going while I headed back to the race HQ! My real love was track racing and I probably showed most potential there but a couple of face plants, broken bones, concussions and a very good friends Campag pedal leaving a life long scar on my left eye meant that I lost my confidence and would never sit on a wheel closely enough to really be in the race!

Cycling was such a massive part of my life and despite stopping racing in my early twenties I continued to cycle to some degree until I had Zach.

I dabbled at a few other sports. I found running less time consuming when I was working so did that for a while, in the late 80’s went to a really hardcore aerobics class a few times a week, thong leotard (who invented them!) sweatband and leg warmers up in situ!

I also did a class called Work out for men, it was at a local sports center and in a massive room. It was a mixture of men and women and every week without fail a very hairy man would find his way next to me, I have nothing against hairy men or women but this mans sweat used to fly off him onto me. Sharing sweat with him felt way too intimate!

When I was pregnant it was my plan that I would be out running within weeks of giving birth. Things certainly didn’t go to plan, an emergency caesarian after a marathon labour and John having to go back to work the day after Zach and I were discharged from hospital didn’t help. I couldn’t even drive for six weeks let alone run.

I have attempted to return to exercise in the last 19 years, a brief go at Netball when I pulled my hand string so badly I could barely walk for two weeks, runs (actually not quite jogs) in the dark when nobody could see me, fair weather gentle bike rides never more than 10 miles.

When we moved to Wellington Street we found that the very steep stairs which lead from the bottom of Bengeo to the top were a very good aerobic workout so I decided that each evening I would run up and down them 10x! Ten very quickly became 5 and when a commuter walked past me while I was running I decided that I could find better things to do with my time!

A few months ago I went to see my GP about a pain which I have had in both my thumbs for some time. The GP requested a number of blood tests including cholesterol, Rheumatism and blood sugar. The results showed my cholesterol is higher than it should be and that I have Rheumatism.

Six weeks ago I decided I would go out on my bike three times a week every week in an attempt to get some degree of fitness and get my cholesterol down. My bike is an old but nice MTB, I have had it for over 20 years. I thoroughly enjoyed feeling my fitness increase and find myself not struggling so much up the hills, increasing my mileage and average speed.

I loved seeing the countryside and wildlife, imagining myself to be some sort of Snow White character(!) talking to the rabbits and birds as I went along. Cycling is giving me some head space to stop worrying about what I need to be doing for Zach and thezachproject.

I had mentioned to John that it might be nice to pick up a second hand road or crossover. As the third of four sisters I have only ever had one brand new bike in my life which was my 20 + year old Raleigh Team Titanium MTB.

Imagine my surprise when I came home a couple of weeks ago to find a beautiful shiny cute little road bike (it has to be little for me!) My initial reaction was that it is too nice a bike for me and for what I will be doing on it, I also felt some degree of pressure to ride it!

It is without doubt the nicest present I have ever had and riding it is fantastic. I feel like I am flying even though I am only just about hitting evens. My mileage and average speed are going up and I want to ride my bicycle!

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Getting the balance right between being the parent of a young person with severe disability and getting some time out for yourself is tricky and up until now I haven’t been getting it right. I have quite stupidly felt a degree of guilt when I take time out for me but with things going well with thezachproject and my health suffering now is definitely the time to start.

Thanks so much to Senova Cycles of Hertford and of course to John for sorting out the best bling I could ever have wished for. I no longer feel guilty about having such a wonderful bike when I am a plodder I just look forward to the next time I can get out on it 🙂

 

 

 

The way forward?

I’ve been quiet for a while, there seems to have been a lot going on.

We had a bumpy few weeks when Zach first moved into Water Lane House, but thank fully he seems to have settled in now. He has two new Beam team members, Poonam and Enrico and he seems very happy that they have joined thezachproject.

A couple of weeks ago we received the good news that Health had agreed to part fund Zach’s support. The news came after 14 months of form filling and chasing the elusive funding for young adults with severe autism which is Continuing Health Care!

Before we started the process I was sure that Zach met the criteria so I pushed to have the assessment done. I am very pleased that despite occasionally feeling like I was having my teeth pulled we pursued it.

Zach is the first young person with autism and complex needs who is not in a hospital setting in Hertfordshire to receive Continuing Health Care funding and it feels like a real victory, not just for Zach but for all the other young people in a similar situation who will hopefully now be able to use Zach’s funding as ‘case history’.

I spoke to Zach’s Learning Disability Nurse, Faith last Thursday and she was thrilled that we managed to secure Continuing Health Care for Zach, we are very grateful for all the work she and Beam did to help us secure it.

Hertfordshire social services are going to meet to plan how this could help bring people similar to Zach, who have been placed out of County back to be closer to their homes and families.

The manager of Beam, the CEO and I met with a Commissioner from Hertfordshire to discuss commissioning Beam in Herts. It was a strange meeting! We had been asked to meet but there didn’t seem to be an agenda. Anyway it was interesting to hear what the Commissioning teams in Herts are concentrating on at the present time.

The Transforming Care Commissioning team are working on bringing people who have been placed in long term out of county and in county hospital placements back to the community. My thoughts are if the commissioning team and social services got together they might see that there is a way to stop people being sent to these last resort places in the first place! Although I understand that bringing people back into county is a very good thing, I think there should be a dual strand of work being done to prevent further people being sent the same way…..who would then need to be brought back into county….and so on and so on!

My personal opinion is that all commissioning teams should be fully aware of the Transforming Care agenda and working towards that so they are always moving the young people forward rather go back to go forward…does that only make sense to me?

Transforming Care focuses on five key work strands of activity-

Empowering individuals – giving people with learning disabilities and/or autism, and their families, more choice and say in the care and support they receive.

  • Getting the right care in the right place – ensuring that people are receiving high quality care and support, with a focus on supporting people in their local communities.
  • Regulation and inspection – tightening the regulation and inspection of providers to drive up the quality of care.
  • Workforce – developing the skills and capability of the workforce.
  • Data and information– making sure the right information is available at the right time, and continuing to track and report progress.

When we talked to the Commissioner at the meeting it was clear that if Beam become commissioned in Herts they would be another service provider, a name along with all the other names of companies who provide support. What social workers and commissioners would see is that they are a little bit more expensive than other providers and so they would not usually be their first choice of provider.

In our experience when the wrong agency is commissioned to provide support things can go horribly wrong and before you know it the whole family is hanging over that very steep cliff edge again with the agency having pulled out because the workers they provide do not have the knowledge or expertise to support someone with complex needs.

This is so important and Beam absolutely do this for Zach! – Getting the right care in the right place – ensuring that people are receiving high quality care and support, with a focus on supporting people in their local communities.

This may sound like a party political broadcast (and there are more than enough of those at the moment!) for Beam but I feel so strongly about what happens to all young people who have severe autism and complex needs who fall through the net time and time again and do not get the chance to have high quality support so do not meet their full potential and are therefore unable to have a rich and fulfilling life.

 

Ambitious about Autism have had their college ‘Ambitious College’ officially opened by the Minister for Vulnerable Children and Families, Edward Timpson MP. It is great that the dream parents at Treehouse School had has now come into fruition.

I along with many other parents at Treehouse School thought that this would be where Zach finished his official education. It is hard not to feel let down by the charity and organisation when I see press articles suggesting that Ambitious about Autism are ambitious about ALL young people with complex needs and autism. Last year when Zach left Treehouse School he was not the only student who was refused a place at the college the charity had opened and that we as an extended family had contributed money towards. John’s sister Caroline had a big party for her 50th birthday and rather than have presents for herself she asked for donations to Ambitious about Autism to go towards the college where she thought her nephew was going! I am absolutely sure many other families also contributed to make sure the college was a reality too.

Despite my disappointment at Ambitious about Autism no longer being a charity for the most severe and complex people who have autism it is great that London now has a college. I hope that the students who attend are happy and learning.

For Zach I think that not being accepted by the college was a good thing, at the time it certainly didn’t feel like it but he could not be in a better place and with a more committed team than he is! Go Beam and Zachie 🙂

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Tough times.

I don’t usually share our most difficult times with Zach.

When you are battling with the authorities for the support needed, all that is focused on are the most negative aspects as that is the only way to get the message across. It doesn’t matter how old Zach is I always feel like a traitor and as though I have betrayed him.

When I was still green I was desperate that people realised Zach’s potential and wanted them to know what he could do, not what he couldn’t. However small the steps forward were I wanted people to know and like any other parent I was proud of him. However I quickly realised that this wasn’t the way to get support.

Zach is having a particularly tricky time at the moment and the most difficult part of it is that we don’t know what is causing it. It must be so frustrating not to be able to express your feelings and not be able to make other people around you understand why you feel anger and upset.

Zach is supported by a fantastic team in Beam ABA Support, they take data during each and every session and analyse the data.

A definition of Applied Behaviour Analysis from Wikipedia:-

ABA is an applied science devoted to developing procedures which will produce observable changes in behavior. It is to be distinguished from the experimental analysis of behavior, which focuses on basic experimental research, but it uses principles developed by such research, in particular operant conditioning, classical conditioning and social learning theory.

ABA uses ABC which is

Antecedent-what happened before the behavior

Behaviour-what is the behaviour

Consequence-what happened as a result of the behaviour

The ABC can show both positive and negative behaviours.  Positive behaviours need to be positively reinforced whilst negative behaviours need a different approach which is carefully tailored to the individual.

After almost two weeks of Zach escalating frequently at things which would not normally bother him both John and I are feeling very desperate.

The Beam team are absolutely wonderful and seem able to take it all in their stride, though last night something happened which was a first for us all.

I was going to Laughter Yoga which seems rather ironic now! Zach was going bowling at the local leisure park with two of his support workers. When Zach left home he was happy and bouncy, he loves bowling. I don’t think it is the actual activity he loves but the vibrant environment, but it is certainly near the top of his list for favourite activities.

When they arrived at the leisure park Zach was reluctant to get out of the car and shortly after leaving the car he had a high intensity escalation. It being the school holidays there were lots of people around.

Most of the general public have not ever seen someone with autism having a full on escalation. Naturally they don’t understand what is happening. A crowd grew around them which is the last thing needed, space and a clear safe passage to a place of safety is needed. The place of safety last night had to be the car.

A number of people asked if there was anything they could do to help while others demanded to know what was going on. So while the Beam team were trying to safely get Zach back to the car they were being followed by three men who wanted to stop them to find out what exactly was happening. To remain calm and polite in that situation takes exceptional strength but they managed to.

Zach was still escalated when they reached the car and the group of men who followed them were still there, there was also somebody on a bike following them. The team were feeling uncomfortable about being followed by a group of men and the next thing that happened was a police car came steaming into the car park followed by another three and pulled up next to the car.

The team were questioned by the police about who they were, what they were doing. They had to give my name and number. It became obvious that people had thought that Zach was being abducted.

It was a first for Beam to be questioned by the police and a first for us all the police being called. Obviously we all found it both concerning and upsetting.

When I went to bed I lay thinking about it. I can quite easily see why those who do not have sufficient support do not take the person they care for out into the community. It can be so daunting to receive unwelcome stares and comments when you are struggling to keep a lid on things and everyone safe.

If you have time please read the article this link file: http://medicinetimes.info/2016/05/08/my-son-has-the-kind-of-tas-aout-term-life/ it describes our life pretty well.

I posted the article on facebook and some body commented that not many people have autism this severely, sadly I think the fact is that not many people who have autism so severely are seen out in public.

Every morning I try to have positive thoughts about the day ahead, hoping that Zach will have a good day, two weeks feels like forever when your child is having such a tough time. I am a natural optimist but it can wear very thin at times like this.

It is fair to say the benefits of Laughter Yoga were cancelled out pretty quickly.

Today is another day and Zach went off happy, I have everything crossed that this will be a good day for him and all around him.