The Wonderful Mr Saysell

Today is our wedding anniversary, 17 years of married mayhem!

I probably don’t mention John as often as I should in my blog.

He is an absolutely vital part of our team of three! And I know this is a cliché but has been a rock during the whirlwind our life has been since Zach’s birth.

I may be perceived as a strong person but I have had many wobbles since our first concerns about Zach and autism. I initially found being different very difficult. I think the main reason for that was that I didn’t want people to judge Zach, or stare at him or think that his behaviour was odd. For that matter I didn’t want people to judge us or stare at us, I don’t think I especially minded if they thought I was odd.

I felt isolated and lonely and very sad. We tried so many different things to help Zach and his autism and none of them worked because there is no such thing as a magic wand. I went along to support groups and tried to meet people in a similar situation to us but I still felt the same.

I started to have panic attacks which were usually about what might happen, rather than what had happened, because when it did happen it really wasn’t that bad but my head and heart were in a bad and sad place. It wasn’t the life we had expected, and it was very hard to change our expectations, to hear what other peoples children were doing, and what they were doing, that we were unable to do.

We had a break planned to my parents in Spain. We had to set off at some horribly early hour and drive down to Gatwick where we had booked a carpark which was miles away from the airport. We had to get a bus to the airport which made me feel travel sick and by the time we actually got off the bus I could feel the panic bubbling away, getting worse and worse. As we approached the check in desk I pleaded with John that we went home but he obviously wanted to go on holiday. Whilst waiting in the queue to check in I passed out, I think that is the first and last time I passed out due to anxiety (I am not complaining, it was more than enough) We got to Spain and I spent the entire week on the verge of melt down, Zach was happy and cheerful and if I was worried about him coping with the change of environment it was a wasted worry!

Eventually my fear of having a panic attack meant that I became terrified to leave the house. How John managed I will never know. He worked full time,  did all the shopping and took Zach to playgroup every day and picked him up. He took Zach to all his appointments with Doctors and speech and language therapists whilst I stayed at home a quivering wreck.

John did this for about a year until I felt strong enough to start going out and about again. Anywhere that we went the agreement was, that if I needed to go home we would and I think that the knowledge that I knew John meant this allowed me to become more confident over time.

For the next few years I would occasionally have a wobble when times were extra tough (I can’t just say tough as times are certainly always that!) and eventually despite the cost being £125 an hour John sent me off for Cognitive Behavioural Therapy and since then I am happy to say that although I do on occasion feel pretty desperate about things I don’t have the awful sense of foreboding that you have with anxiety attacks.

Although I am far removed from the person I used to be before autism entered our life, when it comes to being Zach’s advocate I am back to being confident and self assured and will battle on until I am the last (wo) man standing if need be.

John and I are both very different from the people we were when we met, our lives have changed beyond all recognition. We all expect our lives to change when we have children but when you have a child who has autism or another disability your world becomes much smaller. People blame the autism but it is often inability to accept the autism which has limited a number of relationships and only the very good friends remain.

Our anniversary today has been as our whole life is, unconventional! I called into see my parents with a great big bunch of flowers as they have been married for 67 years which makes our 17 sound like a walk in the park! and then we went to do some jobs at Zach’s new base. We shared a Waitrose sandwich for lunch. While I am typing this, John is vacuuming  a trail of granola up which Zach has spread around the house.

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The reason for this blog post is to say that although today wasn’t special, we didn’t do anything remarkable to mark the day I know I am very lucky. John is a great husband and a brilliant father. Zach and I are both very lucky to be on his team 🙂

Happy Anniversary John, we love you.

 

 

 

I am very pleased to announce..

thezachproject is in its new home and it is a great space! Zach has taken to it like a duck to water and seems very happy in his new surroundings.

John and I, with the help of some very kind friends got the keys on the last Thursday in February and painted every room, put in new kitchen units and made it Zach’s own ready for him to start using just 6 days later. I felt like we were on 60 minute makeover(except that it obviously took longer than an hour)!

We still have some jobs to do and changes to make but I am pretty pleased with how it is all looking and thrilled that he enjoying being there.

While we were still uncertain where we were going to go after we left Scott House we held an open morning at thezachproject. We invited along 0-25 professionals and County Councillors who had been kind enough to get on board with our search for a new hub.

Cormac and Mary from Beam ABA Services came along to meet our visitors and chat to them about what they were doing with Zach and how they differ from conventional care providers.

An amazing and wonderful outcome of the open morning was that Sue Darker who is the Operations Director for Learning Disabilities and Mental Health told us that she would like Hertfordshire to Commission the service working with Beam and with me Co-producing. It is a very exciting and thrilling idea that Hertfordshire, which before thezachproject had nowhere suitable for young people like Zach are now interested in commissioning the service and making it available as an option.

Those of you who have read my blog will possibly remember the difficulties we had selling the idea initially to the powers that be. It was unknown territory to Hertfordshire with the added uncertainty to them of using Beam ABA services who were not a known provider. Had it not been for the expertise and tireless work of Beam thezachproject would not have worked. I had an idea but it would have been almost impossible to get it off the ground without them.

Cormac and I will be meeting with Sue and commissioners in April.

Another massive pat on the back goes to Hertfordshire because they are one of only two local authorities to signing up all of their special schools to The National Autistic Society Accreditation programme. It was really good to read this and it would be great to think that they may go on to sign up all Hertfordshire schools and not just the special ones! One step at a time though…. 🙂

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A rant…

Sometimes it just seems impossible to keep a brave face on things.

We are having no success in finding a new base for Zach and I am having to explain over and over again to very well meaning people about Zach’s autism and needs.

Explaining this is never easy, it sometimes feel like I am beating myself up every time I have to do it, especially on a day when I am having to explain multiple times.

I don’t expect ‘Joe Average’ to have any in depth knowledge of autism, the autistic spectrum and the fact that people with autism maybe are or maybe aren’t also physically disabled, but Zach is definitely physically 100 % able and stairs are definitely not a problem…that seems to surprise some people.

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Disability is a word which has so many different connotations for so many people, mostly people are thinking of somebody in a wheelchair and probably look far more sympathetically on that person than they do to the person who is struggling with sensory overload and trying to make themselves understood loudly!

Then there is the word sympathy. Sympathy has its place but that place isn’t making me feel as though my life has been ruined because my son has autism. Empathy is much more appreciated and practical help! It is far easier to be sympathetic as that just involves making what are considered to be the right noises and having people tell you how wonderful you are because you evidently love your child and don’t want to send them hundreds of miles away to a residential placement….’it would mean you could get your life back’!

Well he is my life! He is my career and if he is happy we are happy! I don’t want to be told how wonderful I am because I love my son! He is my son, it would surely be far more of a surprise if I didn’t love him!!

Now I’m not saying I NEVER want to be told I am wonderful (John Saysell, please take note!) but I just don’t want it to always be in the context that I am wonderful for being a mother!

I am lucky to have Zach, I adore him and love him like most mothers, I don’t want to be constantly talking about the bad bits, I want to tell everyone about the good bits!

Sorry for the rant, this morning has been particularly challenging with phone calls to people who through no fault of their own have little or no experience with autism….

Tomorrow evening I am going to have my first experience of laughing yoga and boy! do I need it….however when I say my first experience it isn’t true, I’m always the giggler at the back of the room!

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No Email Ping-Pong here!

I wonder if the saying ‘watch pot never boils’ has a similar 21st century saying…something like ‘glued to your outlook, inbox never pings’….or something 😮

We have just 48 days left in our current hub for thezachproject and my glass half full feeling this evening is that we aren’t any closer to finding a new place.

It isn’t through lack of trying I am emailing madly, phoning and knocking on doors but the old…you never phone, never call etc  applies.

I have asked for advice from some people who have a lot of savvy with this kind of thing and I am following there advice but my goodness why can’t anyone pick up their telephone, open their door or ping a blooming email my way!

One of the local County Councillors has really engaged and I met with him on Monday, along with Diana Eden another parent. We hope that Sam will be able to share the hub with Zach with his own Beam team. Dr Andrew Stevenson was very generous with his time and keen to listen to what we had to say, and he wants to help us. On Friday I am meeting with our MP who I hope will also be on board.

Today I spoke with the local paper about our situation, the reporter seemed quite insightful, I hope it is a positive article which garners some interest. He did ask me to let him know if we get any response….it will be in your Hertfordshire Mercury tomorrow! We were  asked for some photographs, simple for Zach, not so simple for John and I. I searched my computer for a family photo, not a single one and John then searched his and found one of the three of us on a carousel at Butlins, I wasn’t really sure that was what the Mercury were after, I did have a few of Zach and I wearing bizarre head gear over Christmas,  maybe not quite right for this.

 

I visited the Community Voluntary Service which is based in Stanstead Abbots and met with Fay Turner who is the services manager there, she is a lovely lady full of ideas. We chatted for a long time and she mentioned an empty space in central Hertford which sounded very interesting. It has been empty for some years apparently and belongs to East Herts County Council, I have contacted them…still no ping!

Last week I was completely sold on the idea that we buy the biggest portacabin there is and then we have a permanent base which is ours….however where are we going to put that massive portacabin?! Then John suggested we purchase a barge…..I think we were losing the plot slightly by that time. Maybe if we had a space the portacabin could work, it would be a good starting point until the project grew and we needed a bigger space.

People have been very kind and thoughtful making suggestions about places we can look and people we can approach but one of the absolute requirements is that we are within walking distance of a mainline station so members of the team can get here, and the other is that we are close to a community so that it can be accessed. Both these requirements immediately make the building/space we are looking for worth a lot of money!

I have emailed and phoned Commercial Estate Agents, the same one a number of times about different properties….PAUL WALLACE but it always goes to answer phone and I have not had a single reply to my emails.

Today I emailed various Directors, Managers and Commissioners from Adult Care, Zach’s own social work team and County Councillors and District Councillors and our MP to invite them to an open morning at thezachproject. I do think that people don’t understand what we need to re-locate which is actually just a physical space, close to railway, community with WC and kitchen amenities.

I don’t think the people who approved funding for thezachproject fully understand what it is we are doing so I have invited them all to come see for themselves. Still no pings! Cormac the Manager of Beam ABA Services London and Mary who is Zach’s programme supervisor have agreed to come along and talk to the powers that be about why thezachproject is working and what exactly it is that they do.

When John and I were at Scott House on Sunday afternoon having a tidy up and trying to find stuff we could get rid of I thought about all the hours of work, careful thought and planning we put into this wonderful space which Mudlarks gave us and on the one hand it makes me sad that we will soon be dismantling all we have done but on the other we have proved that thezachproject is working, that Zach is learning and accessing the community.

Please do let me know if you hear of anywhere that you think maybe suitable, and if you lie awake for hours at night use that time wisely and try to solve our problem please….is it just me that does that?

Any suggestions, ideas, thoughts will be much appreciated. 🙂

 

 

 

 

 

What Christmas means to me…

Christmas is probably not for most parents with a child who has autism, quite what we thought it would be.

As a child I loved Christmas, my Mum always used to buy us the most wonderful and unusual presents and I can remember the thrill of opening them on Christmas morning. I loved the stocking fillers my Dad found in Covent Garden and Neal Street, I loved Christmas dinner and all the family being together, seeing friends and that general feeling of goodwill to all men, it was a happy time.

As I grew older through my late teens and early twenties the meaning of Christmas was lost, it passed in a haze of over eating, alcohol and hangovers! (I guess (and hope) I’m not unusual in this!) My parents moved to Spain when I was in my very early twenties and we no longer had a family home in this country which meant that Christmas was no longer a family event, we did see each other but it certainly changed things.

And so in my early thirties having my beautiful baby those memories and the magic of Christmas came back and I wanted Zach to experience the happy times I had as a child.

I probably went over the top (some might say I always do!) but I made the house look beautiful, the tree was big and covered in pretty trinkets and baubles and Zach’s pile of presents was like a small mountain. My disappointment at Zach’s lack of reaction at his first Christmas was probably far less than I felt the following year and the year after that….

All those carefully chosen presents and the hope that this year Zach may rush downstairs with excitement etched on his face in anticipation of  the gifts he was going to receive and tear the paper off them and play and engage with the treasures he found. It would be fair to say that this has never happened. Obviously the disappointment that this never happened was mine and John’s, Zach wasn’t bothered about presents especially in the early years. In those years our disappointment was huge, it became more and more difficult to find presents that Zach might just like, it was usually very hit and miss and I found myself spending more and more in desperation that he may actually like something!

As the years have gone by we have learnt a lot about Zach (obviously) and what Christmas means to Zach. Although Zach does now like opening presents it usually takes him well into the New Year to finish opening his, this year he didn’t even look into the big red sack which holds his bounty. I did manage though to persuade him to open two presents yesterday 🙂 he was vaguely interested. We realise now that what he really likes are all the little stocking fillers, and although I usually do spend a small fortune we don’t need to. I am going to see if I can get him to open a couple more presents later today.

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Christmas certainly hasn’t always been an easy time of year for us and we have still in recent years had tricky festive periods which have certainly not made us feel festive at all.

Christmas has become possibly one of Zach’s favourite times of year. He loves seeing the decorations going up, not because of the sparkles and shine but I think because it signals the start of a time when we are all relaxed and happy and spend quality time together without having to rush off to work or other appointments, he is simply happy for us to all be together. He enjoys seeing family and friends, a room full of people laughing, chattering and smiling. Zach loves people who smile and are happy, it doesn’t matter what time of the year it is, this is something which makes him very happy.

As a result of Zach’s love of Christmas, even though it has not been what we expected John and I love Christmas. It is a precious time and for all the right reasons.

Christmas for many people who have autism is a terrible time of year. For those who live their lives bound by routine, find it very difficult to socialise and dislike surprises it is very difficult. People with autism often have much heightened senses and so the lights and noise at Christmas can become over whelming to them causing sensory overload, resulting in meltdowns, aggression and more. Some families just do not celebrate Christmas so stringent are the demands of their young persons autism. It can be a time when the different lives we lead are even more pronounced and it can be a very miserable and sad time.

I often think that there is much that we ‘neuro-typical’ types can learn from people who have autism. Material possessions are completely unimportant and although Zach loves technology he isn’t bothered about whether his current tablet or computer is the one with the highest definition, pixels, the colour or cost. He forgives instantly and loves unconditionally. He shows incredible patience when he is trying to communicate what he needs or wants. He is content with so little, just happiness, smiles, family and time.

So for us as a family, Christmas is a very special time. We have changed our expectations (plus Zach is of course now 19) and we know that the presents are way down the list when it comes to why Zach loves this time of year. We still buy presents for Zach, but we know that it will take him a while to get round to opening them, some will be hits and others will be complete misses! But that doesn’t matter, his contentment at this time of year is something money can’t buy and it makes us feel the same way and count our blessings.

 

 

Still stumbling through the woods..

After a long period with no blog post from me, due to despair and general exhaustion bought about by the difficulties of trying to beat the system I would like to be able to tell you all that we are out of the woods however…..

We have funding until April but have received notice on Scott House! Mudlarks have used the wonderful Scott House for the last three years as a base and it has been a brilliant base. We have had many events there both in the house and in the beautiful garden but the Landlord has sold it to a developer and we need to be out by early February.

We have worked so hard to make the rooms we have at Scott House to be a great environment for Zach to learn and relax in and it feels rather as though we have just got it as it needed to be and we need to be on the move…however we are very grateful to Mudlarks for giving us the space and we now know that what we have set up works, we just need to find another space for it to work in!

If anybody can think of a suitable space please let me know, we need a space close to a main line station, and close to the community as it is vital for Zach to continue to be able to access it. Our budget is very small, but if you have any ideas please let me know.

Mudlarks will also need a new base, preferably with storage, parking and accessible. We would love to share a building with Mudlarks again but if you know of anywhere which may be suitable for them please also let me know.

In other news a friend and I have started a monthly disco for young people with additional needs. We have called it ‘Zambo Dance Nights’ and it is being held at Hertford Theatre, The Wash, Hertford SG14 1PS. The room we have is perfect for our young people, it is a large space with glass windows looking out onto the rushing water of the river Beane going through the weir, so very sensory.

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We have held two so far and they have both been great nights. One of the things I am really enjoying is the unbridled enjoyment on all the young peoples faces, nobody is bothered whether they look cool or not and that includes the parents and support workers :p

Bradley Clark who goes into Scott House every Tuesday to do DJ’ing with Zach has been providing the music and lights which every one has enjoyed. We have use of the theatre foyer which is a nice area and the bar is open for refreshments.

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Our next event is:-

The Zambo Christmas Special

21st December 2016

7.30-9.30

£5 entrance and support/parents go free

web address is http://zambodance.wixsite.com/zambodancenights

It will be a great night with loads of cheesy Christmas tunes! If you can make it please let me know, we do have a limit on the room so if your name is on the list you are definitely coming in.

Here’s hoping someone knows of somewhere wonderful waiting to have lots of life breathed into it! 🙂

 

 

 

 

 

 

 

Here we go again.

Zach has apparently completed three months of thezachproject and the process of applying for funding has started again, at least we think it has.

I contacted the transition team regarding this some weeks ago and eventually it seemed the wheels had started turning and there maybe just enough time BUT there was, we are told, a glitch in that somebody thought something was something else and so it was maybe not submitted to panel in time…..which means that we are once again stressed and strung out.

It has been explained to us that we will probably have to reapply for funding every six months, it is a pretty painful process to have to go through. We are at the mercy of a panel who have never met Zach, have never met or contacted the expert providers who deliver Zach’s support and have never spoken to us. The panel in their wisdom probably wonder why Zach needs what they regard as expensive support and would we are told, like us to use a cheaper provider….if the panel want to get in touch with me I would love to tell them why this wouldn’t work and how we have seen it fail time and time again in Zach’s life.

Because a person has autism and is non verbal does not mean that they should not be entitled to a good quality of life. Containment is not giving a quality of life, for instance two very nice girls used to come to support Zach, they said that they would take him for a drive and that is just what they did. They took him for drives and didn’t ever get out of the car with him because they didn’t have the necessary tools to be confident to do so. Their lack of understanding that Zach isn’t like every other person they have ever met with autism, that he is primarily Zach who has autism, not Zach who is autistic. There is a very big difference.

What would be very refreshing and incredibly astonishing is if our local authority gave thezachproject a real chance and decided that they would support what we are doing. They would review the carefully collected and graphed data that the BEAM ABA Services team collate and they would meet and talk to BEAM about what they do which is different to other local providers and then they might just think…..actually this could really help a lot of other young people with severe autism and complex needs in Hertfordshire. It is offering a bespoke and highly individualised package of care which includes the young person learning, accessing the community and also gradually having the tools to regulate their behaviour. The providers have high aspirations for their clients and they really want them to achieve the goals which they set and then when they do achieve them, they set another goal. They problem solve, adapt behaviours into something which is acceptable and good. They provide positive behaviour support, they are highly trained and they are all people who have chosen their job, rather than the job choosing them (which is quite often the case for some people who go into care work).

Hertfordshire could become trail blazers for providing top quality support for all the young people that the current available services don’t seem suitable for. And what they might find is that although it is expensive, over that young persons life time they cost less because the longer they receive the expert input the more able they become and the more likely that they will be able to remain living in their own community rather than being shipped off to some where miles from home where they are once again living a life of containment.

I am writing this as we wait to hear whether thezachproject made it to panel today and whether panel agreed to give us another six months or refused to fund Zach.

We are well aware that social services don’t have a bottomless pit of money but until there is a viable alternative, that offers the same service, with the same expert team of workers there is no option.