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.

 

 

 

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Looking back, keep moving forward.

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

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

Anyway I started sorting, charity shop and bin.

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

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

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

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

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

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

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

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

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

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

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

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

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

He was then restrained.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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.