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

 

 

 

 

 

 

Happy New Year!

Happy New Year everyone, I hope you all had a merry and bright Christmas.  We have slid into a New Year relatively unscathed! I hope it is a great one for you all.

2017 was an up and down year for us and thezachproject. We found out in December 2016 we needed a new base as Mudlarks were losing the use of Scott House so the first two months of the year were spent in a massive frenzy knocking on doors until I found somewhere suitable. Our current premises is great and has been one of the successes of last year.

 

My one disappointment with our current base is that it is really only big enough for Zach, it is still my goal to find a base which can have multiple users. The base would be for people who are currently in ‘no mans’ land, they like Zach cannot access current services because of their complex needs yet need a base, inclusion, activities and a peer group. A fulfilling and satisfying life.

The other morning I woke up after a very vivid dream (I have a dream!) when part of a large local sports centre was being sold off for £159,000 and that was going to be the base……anyway I’ll keep doing the lottery!

We had plenty of ups and downs with Zach’s behaviour over the year and his new supervisor worked tirelessly to try to find ways to satisfy Zach’s rituals without it descending into an escalation and challenge for everyone involved. Beam ABA Services continued to support Zach and us as a family and I thank our lucky stars (if there are such a thing) daily that he has such expert committed support from them.

To contact Beam ABA Services Limited if you are looking for expert support call -020 3886 0640 or email contact@beamaba.com

Becky who owns Art Explorers in Hertford started working with Zach in September and she is one of the big hits of the year! Zach has art with Becky every week on a Thursday morning, I am so pleased to have found her! She is so tuned in and switched on and Zach really looks forward to her sessions. She has given so much thought to the sort of activities that Zach responds to and gets satisfaction from. It is so refreshing to have found Becky, I had seen her posters around town for the classes she runs with young children and just on the off chance contacted her. She had such a ‘can do’ attitude from the off set, she is smiley and cheerful (which goes a long long way with Zach) and enjoys the sessions herself too which is a real bonus.

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To contact art explorers you can email artexplorers1@gmail.com, I can’t recommend her enough.

We are still looking for a drum teacher, Zach had an electronic drum kit for his birthday and we would love a drumming Becky if anyone knows someone who is patient, enthusiastic, smiley and happy who may be interested 🙂

One of the downsides of the year was the almost frequent contact we had with the police. In November one Sunday evening when Zach was upstairs and John and I were watching the Strictly Results show (it’s just how we roll!) there was a knock on the door. I opened the door to find a policeman asking after Zach’s welfare. I invited him in and he told us that a member of the public had reported seeing Zach and his support team in Stevenage on the Friday afternoon. Zach had escalated and been escorted back to the car and the member of the public had reported his team were repeatedly shutting the car door on his legs and laughing and joking saying that they mustn’t leave any bruises on him.

I was astonished when he told us this, Zach had just had a great weekend, he was happy and cheerful and certainly had no bruises anywhere.

After a long chat with the Officer he was satisfied that the member of the public had not given an accurate account of what actually happened, but the police had reported it to Social Services and on the Monday morning I had a call from social services who then visited Zach at his base and spoke to Zach’s supervisor, the matter was then referred to safeguarding.

Fortunately due to the diligence and professionalism of Beam recording and taking data after the Safeguarding meeting the matter was closed. However it didn’t feel very nice knowing that if the meeting did not go well, or if there was not a clear report concerning the incident that the outcome could have had a very negative consequence for us all.

I am grateful to members of the public who look out for the vulnerable and act if they are alarmed by something which they see but to report something and embellish what happened could have caused an out of control snowball for us! I like a bit of snow but….

When a person who has autism escalates it is not pretty, it is an uncontrolled mess! Zach’s team are all qualified in Team Teach which is safe and causes no harm or pain. It is alarming to witness, it is chaotic and frightening and what is happening could easily (and has) been misinterpreted but the alternative of public escalations is them happening somewhere out of sight because the support team are not confident to take him out in public……Zach loves going out and about and that isn’t something we can ever let happen.

I had my broken ankle in September which put a lot of extra strain on John. We were however overwhelmed by all our wonderful friends, although I would rather not have broken my ankle to have this affirmed. Zach was an absolute star when I was in plaster and was very gentle to me, who says people who have autism don’t have compassion!

Laura and April gave up having Zach overnight in November due to a change in their circumstances so I need to explore our options and find the best solution for us all before this year gets too old. I need a plan, then I need to get the plan agreed and make it happen. We are very grateful for the support they gave us as a family.

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Cora and Daniel still take Zach out for the first two Saturdays of every month. He has a great time with them and positively jumps with glee when they arrive. He has been to some new places and some which are old favourites and always comes home happy and content from their trips out. They have been taking Zach out for some years now and we feel very lucky to have them, they are really wonderful, kind people. They both work full time but still give their free time to us, we really appreciate them.

 

‘Get Set’ was a great addition to Zach’s weekly activities, it is an initiative by The Three Rivers District Council and designed to increase accessibility to leisure activities for adults who have disabilities. They have a number of different activities over the course of the week including dance, games, trampolining, drama and horse riding. To find out more about what they offer contact 01923 776611. It is a shame East Herts District Council don’t have a similar offer.

My last mention in this post goes to Hertford Theatre. It is a lovely little theatre and I have had conversations with Ben who is the front of house manager about doing more for people who have disability at the theatre and he seems keen. The theatre runs its own pantomime every year, this year it was Rapunzel. The production ran from the beginning of December to January 1st. On the 28th of December there was to be a relaxed performance, we and many other families I know purchased tickets and looked forward to the one relaxed live production of the year.

On the 28th December due to cast illness the performance was cancelled! What a massive disappointment. It may have been unavoidable but still such a shame that our children missed out on the experience of live performance.

Today I went into the theatre and got a refund on the tickets. I asked if they were going to put anything on instead as a relaxed performance. I was shown two shows between now and April. While I applaud that they are having performances which have British sign language and audio description it is quite alarming that this was regarded by the theatre as being a relaxed performance!

Disability comes in all shapes and sizes! One size does not fit all and I am pretty sure that Zach would not be very interested in a show about Afghanistan and post traumatic stress disorder, it doesn’t sound quite as much fun as a pantomime!

 

 

The A Word and other such things…

The Beeb possibly thinks it is being radical and right on airing a television drama about a family with a young son who has autism on a prime time slot.

We had Chris Packham tell us all about his life with aspergers and the difficulties which he has faced as a consequence.

He also touched on the use of Applied Behaviour Analysis in America. ABA is used here to excellent effect and this needs to be recognised.  Zach learns using ABA delivered by Beam a specialist ABA provider and there are whole schools of pupils learning using it right here in the UK. People need to know that!

I have many friends who have family members who have autism to a similar degree as the child in The A Word and who have aspergers and I am sure that they can relate to these programs and identify with the drama and facts.

I can’t bring myself to watch these things!

So many people have asked me if I saw The A word or the Chris P documentary, I didn’t. I am guessing that people think I would be interested in them because they are about autism but they aren’t about my son’s autism or many other young people I know who have autism. They don’t relate in any shape or form and I can almost not bear that people think they do.

For some reason (and I know I have blurbed on about this before) families who are living with someone they love who has severe autism and challenging behaviour are rarely, if ever acknowledged by mainstream television.

A few years ago the lovely Louis Theroux filmed in America one of his documentary programs on Autism and a school which was helping pupils who have challenging behaviour and difficulty coping with daily life. One of the reasons Louis gave for filming in America was that there has been a massive increase in Autism in New Jersey. News flash Louis, it isn’t only America!

I watched this 2012 documentary with interest, I can remember it graphically showing young people who have massive anxiety and communication difficulties in full melt down at home with their struggling families and how well it portrayed the stress and despair for those families and young people.

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Louis Theroux and his 2012 documentary ‘Tough Love’

 

 

 

Autism and complex needs is a recognised term for describing what Zach has. The complex needs covers just what it says.  Daily challenges which change on a weekly basis so just as quickly as Beams expert team of behavioural psychologists get a handle on one behaviour, Zach decides to change to another equally challenging behaviour just to keep them on their toes.

Repetitive behaviours which come and go, throwing things out of the bathroom window has recently re appeared in Zach’s repertoire. Expensive skin creams and cosmetics need hiding again.

With colder weather most people want to keep their windows shut and the warmth in, Zach has started opening the bathroom window as wide as it will go. If I ask him he will close it but I am not always aware it has been opened until I feel the wind whistling around the house.

Zach has also started turning lights off when he leaves the room which is great unless you are left sitting in the dark!

None of these things are the end of the world and as with every aspect of life we have to pick our battles, so what if my bare mineral eyeshadow which I have yet to wear disappears out of the bathroom window, or John is standing in the shower naked and wet before he realises there is no shampoo or soap in the bathroom as it has all gone the same way as my eyeshadow! These things are a minor inconvenience and we learn to live with them very quickly.

We never have any toilet paper in our bathroom, it is kept in a special secret place because our back yard was covered in more loo paper than a whole litter of Andrex puppies as Zach sees toilet paper and it immediately gets thrown out!

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Very cute! The toilet paper on its own is less cute and much less so when it has been raining and is strewn all over the back yard!

 

We are used to compromise in our house and in our lives which is usually fine unless we are being pushed very hard by other aspects of life and it can seem especially tough.

The most difficult thing by far is the challenging behaviour, that is something which no matter how often it happens we can never become used to. Zach’s challenging behaviour at home has decreased since Beam started working with him, they offer consistency and have given him the tools he needs to be able to communicate which is fantastic.

Even though the challenging behaviour has decreased we still both are victims of the aggression which Zach feels when he is excessively anxious, tired, hungry, unwell or maybe just feel incredibly frustrated.

Would people tune into a drama about a family living in Hertford with a gorgeous son who throws things out of the bathroom window and switches lights off leaving his family in the dark? The likelihood is that they wouldn’t and I entirely understand that.

But why do organisations such as The National Autistic Society react as if it some major coup to have The A Word on television?

Sadly its rather like Rain man all those years ago, Tom Cruise and Dustin Hoffman in what was a nice film but led many people to think that anybody who has autism is a mathematical genius or has some other amazing talent.

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Nice film but it was just a film!

 

 

Although the National Autistic Society do some good work they are mainly geared towards families such as the one portrayed in the Beeb’s offering about autism. We are members and there is so rarely an article or campaign which is relevant to our lives I often wonder why we bother.

The Challenging Behaviour Foundation is a charity which was set up by a parent, they share excellent advice and information and is far more useful and relevant to us.

www.challengingbehaviour.org.uk
Louis and Chris if you are reading this and fancy finding out about Autism and Complex needs please do get in touch, I know of many people who could contribute and want their family members to be better understood by the general public.

Broken bones and lessons learned

Six weeks ago today I was in recovery following surgery to my right ankle. Ironically I had fallen off my bike after skidding on mud on the way to be first aider at Mudlarks River Swim.

I feel that I have learned a lot in these six weeks, much I have learned is valuable but I think it would have been easier to learn in a less painful and inconvenient way.

One of the very first things I noticed was that I really did not like being the patient. Most of us find asking for things difficult and consequently in hospital I tried to ask for as little as possible, about the only thing I asked for was to use the toilet. Depending on the nurse I sometimes felt as though I shouldn’t have asked for that!

Most of the staff I encountered were lovely and kind. Its a long time since I worked in a hospital setting and even longer since I worked on a ward and I certainly don’t envy them. Twelve hour mixed shifts meaning they could do a couple of days, then a night or two with one day off then back on days! That can’t be good for anyone both mentally and physically. I haven’t done nights since 1998 and I wouldn’t want to do even one for a large sum of money! They used to exhaust me, I couldn’t sleep in the daytime, I couldn’t eat in the night time….consequently they were great for weight loss but that was about all.

I observed the nursing staff keenly, it was interesting as a nurse for over 25 years to see the difference their personalities, tone of voice and expressions made myself, and other patients feel. I knew which nurses I hoped I was like and the couple I really hoped I wasn’t!

Nursing has changed a lot, it was all about the importance of the activities of daily living when I started out, eating, sleeping, personal hygiene etc. On my third day in hospital a Sister asked me if I wanted a bowl so I could have a wash, I hadn’t been offered this by the nursing staff before so responded with a yes please! That was the last I saw of the Sister…. Fortunately John, Laura and April had been visiting so made sure I got a wash and to clean my teeth but what about the elderly patients and people with speech and memory problems and no visitors? It was a shock to me that things have changed so much.I

t was great to get home and to see Zach. I had been anxious about how Zach would respond to my leg being in a cast and me being pretty much immobile but he has done so well and been incredibly patient with me. For the first four weeks I couldn’t get up our stairs and a friend had very kindly lent us a single bed which was in our lounge. Zach was so excited the first time I got upstairs (on my hands and knees) and that a little normality had returned.

John, Laura and April have been absolutely amazing since my accident, as have Beam. Laura and April immediately increased their overnights with Zach to give John a break. Zach has been having a great time with them.

 

 

He has been to see tribute acts, The Carpenters and ELO and last night saw the real Beautiful South, he has enjoyed going for a drink at the local pub (soda and blackcurrant), pub meals, trips to the supermarket (always a favourite) and has adapted really well to extra nights. John has been working full time, doing almost all of the caring for Zach and looking after me and he looks worn out, I am hoping once I am back to full strength he can take some time out.

Knowing how much pressure John has been under both at work and at home I have tried to minimise what I have asked for. Before I could get upstairs he was responsible for bringing my clothes down and I didn’t feel I could complain at the strange assortments that appeared. I only asked for the bare essentials and sometimes not even them and I am guessing that this is what people who are dependent on others feel like, guilt for asking and not really too sure about they get sometimes as it wasn’t what they asked for at all. Despite trying to ask for things in an undemanding way…would you mind, when you have a minute I could tell that John was understandably tired out and probably did mind and felt that he didn’t have a minute at all!

We have steps up to our house so I wasn’t able to go out unless there was someone else with me who had the time to help. I have spent the majority of the last six weeks in the house as a result and it has certainly made me have an understanding of how adults and young people who have disability and have to wait for someone to take them out feel. For me it has only been six weeks but I have missed events I wanted to go to, beautiful Autumn weather which I would have loved to be out in and my liberty.

Liberty should be a human right but it isn’t, there are people whose only crime is to be disabled who rarely leave where they live and the frustration they must feel can only be imagined, no wonder there are unwanted behaviours which are often not linked to the fact that they have so little choice in their lives.

Boredom began to bite!

I have spent six weeks making things to sell for Mudlarks at Christmas and have had lots of friends visit and take me out but I have known that soon (fingers crossed) I will be able to please myself again when I go out and where I go. Those of us who have choice are very lucky.

Today I have had my purple cast removed, my skin is shrivelled but my gorgeous friend gave me a very expensive voucher which will get me a few pedicures which will cure the problem.

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My surgical wound has healed and the wound where the bone almost popped through is healing nicely. I am allowed to weight bear 20/30% on my bad leg and the wonderful scooter which my friend Jane suggested has been packed up and returned.

It is going to be small steps forward but I am on the way, thanks to everyone who wished me well, it was so lovely to have so many messages, flowers and kind thoughts. xxx

 

What’s going on ‘ere then?

Tomorrow is September and that seems to have flown around, thezachproject is a year and a week old which really doesn’t seem possible. Like all years it has been full of ups and downs, we have lost some lovely staff from Zach’s Beam team but we have also got some great new staff. I have started thinking about the next steps I need to be taking to ensure Zach’s future is the one I am sure he needs.

The last couple of weeks have been interesting. On Zach’s first day back at Water Lane House after our holiday he was going into Hertford town centre with his team when he became upset. This was by Hertford Theatre, he escalated quickly and was very vocal but his team had it under control. Suddenly they heard someone shouting ‘oy what is going on over there’ and two policewomen ran across the road to them. They started shouting at Zach, getting in his face wanting to know his name and what he was doing. Zach’s support team explained and would they mind stepping back and giving them space but they continued in the same vein. Obviously their unwanted input made the situation far more difficult and they seemed totally unaware of what an adult with autism who is struggling to cope may look like. When they finally got the message that Zach could not tell them his name as he is non verbal and that there was nothing untoward going on they asked if there was anything they could do to help! That might have been a good place to start!

I felt very upset when I heard about this. It is the third time this year there has been police involvement, we have never previously had any and I have been wondering why. You will have read in my previous (or you might have done) posts that I am concerned and mystified about why many adults with severe autism do not seem to get out into the community and I wonder if this kind of thing has happened to them too. It would be easy to avoid this happening again by just not taking Zach out, that would be a sure fire way to stop it. .

If the police can’t recognise the signs of autism how can we expect the general public to? Surely part of police training involves working with people who have learning disabilities and the do’s and the definite do nots! Shouting in some-ones face is never going to end well….imagine if as a result of them shouting at Zach he had injured one of them or one of his team! His autism would have been blamed!

I emailed the police and told them what I had been told about the incident and said I was concerned at the lack of awareness of the police and the way they had conducted themselves. About 20 minutes later a very nice lady telephoned and was very apologetic, she asked questions about the incident and I suggested she called Zach’s support team to get precise details. She left a message saying she was sorry it had happened on one of their phones….I am not convinced that steps were taken to avoid it happening again!

The following day I was at work in Mudlarks Garden Café when on the other side of the street two female police officers chased and caught a young girl. I don’t know her age but I would guess late teens. The girl wasn’t resisting them and was just standing when they started shouting in her face, what was her name, what was she doing and before you knew it the girl had become upset and was put in handcuffs! I was so tempted to go across and tell them I didn’t think much of their shouty approach and that if they were close enough to my face that I could feel their spit I would probably need cuffing too. They called for back up and two more female officers arrived….they were there for some time with this poor girl and I really felt for her. Before they moved off one of the officers came into the café and in passing said the girl was having some family problems! Wow

I am fully aware of police cuts. Those who are in the force and victims of crime who do not get the support they need as a result of these brutal cuts have my support and sympathy however if the force needs to make any more cuts I can give them a hand in choosing a couple who need putting out to pasture!

The following Saturday we went to McDonalds with Zach. Like many people who have autism Zach loves the golden arches and the uniformity of the food. Zach had a massive escalation in the car and we were put into a position where we couldn’t move the vehicle. It was probably McDonald’s busiest day of the week and we were stationary in the drive thru’ and nobody could get past us. One of the staff must have let the manager know and he came out and stood back from the car and in a calm quiet voice asked if there was anything he could do to help, could he call anyone for us? When we said no thank you he just said ‘take as long as you need and let me know if we can do anything’ and went back inside.

It seems rather ridiculous that the manager of a fast food restaurant has far better skills at communicating with someone in a difficult situation than the police. Whether a person has autism or not, shouting, raised and aggressive voices will only make a tricky situation worse.

To my friends in the police force please excuse my rant but if you see your Hertford colleagues please give them a refresher in disability awareness 🙂

 

 

 

 

(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 🙂

 

 

 

Where to go, what to do?

Last night Zach went to a Youth Club in a town about 15 miles from home which is for young people with learning disabilities.

He has been there before and has enjoyed playing the drums and listening to music and has even struck up a friendship with one of the other young people there called Charlie who loves music too. He sings and Zach drums.

Last night Zach became very upset whilst there and remained upset for a long time. As the support team did not have a driver I drove. While waiting for Zach to calm down one of the youth workers came over and sat down next to me and said ‘we don’t want Zach to come anymore’. I hope she doesn’t use the same delicate approach when speaking to the young people she works with!

I absolutely understand that Zach being escalated is disconcerting for all around him and it may have been upsetting for the young people at the club but it is just another place which we have been told is not suitable for Zach. The youth worker told me that ‘it is a learning disability’ club, so I said ‘well Zach has learning disabilities’ but I wasn’t going to argue or try to suggest that we should try again. Zach has been excluded, banned, and banished from so many places now that it is like water off a ducks back to me.

Where in our society are the adults with severe autism? I don’t encounter any, (other than in my job as a community nurse in a residential setting). Once people with severe autism and complex needs seem to reach a certain age they suddenly disappear.

There are two things I can think of

  1. That peoples autism becomes less severe with age (which isn’t even worth mentioning)
  2. That people reach a certain age and then live in a kind of twilight zone where they no longer get taken out in public (surely this doesn’t happen?)

But I honestly don’t know where they all are! Everyone has seen the young child who has autism having a meltdown in the supermarket but where are the adults who still struggle with these day to day things?! If anyone knows the answer to this please message me, I would love to know.

I would also like to know where young people who have autism and complex needs are supposed to go to meet their peer group.

Hertfordshire offers a service called Youth Connexions, their role is to offer youth groups (like the latest place to ban Zach) support, information, to help find work placements and suitable educational opportunities up to the age of 24 years.

To say I have been under whelmed by what they have offered us is an understatement! Zach’s Youth Connexions worker could not suggest a single activity, was not able to give me any information or suggestions of work experience and in fact told me he didn’t think he could help in any way! Not very inspiring, he did ask me to let him know of any activities other young people might be interested in!

So what is Hertfordshire ‘The County of Opportunity’ offering in way of….well opportunities for those who don’t fit nicely into the Youth Connexions ideal?

I spend a lot of time searching for activities which Zach will enjoy and will be able to take part in. Some of the ideas I come up with work, while others fall flat but I will keep searching. I want Zach to access the community and still be accessing it when he is 30, 40, 50 and more but one thing is for sure, if he is shut away now with nowhere to go and just John and I for company he certainly won’t be!

Social skills are something which some people who have autism find tricky, new situations and places are something people with autism may try to avoid.  Lack of understanding of expectations and predictability cause massive anxiety and we all try to avoid that!

If there are no safe places for people like Zach to go, to learn social skills and experience different situations and find out that some of them can be good and fun then what? They disappear as adults, their support workers may tell you ‘it makes them anxious to go out, they don’t like unpredictable places and don’t know how to behave in public’…I am sure you see what I am getting at here!

Zach will keep trying new things, doing things which have been tried and tested and getting out and about. If I betted I would put money on further bans but you can’t bake a cake without breaking a few eggs and I want him to keep on baking cakes!