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.
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!
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. 🙂
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….
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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.
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.
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!
is now this!
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.
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.
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.
I can’t believe the flying start it has got off to. Zach goes off every morning looking happy and he is doing so many activities and getting out and about in the community each day which he really enjoys.
John and I have been regular visitors to Scott House on the weekends doing little jobs and finishing off stuff that was started which we didn’t have time to finish and I am guessing that we will need to keep doing that and adding things which we think of along the way.
One of the scary things is that Hertfordshire Social Services only agreed to fund it for 3 months initially, they want proof that it is working and that Zach is benefitting. I go through moments of panic about this, especially as we are a month in and also moments of clarity when I wonder what else they maybe able to offer which would meet Zach’s needs, be person centred and effective in the same way and realise that it probably doesn’t exist!
From Wikipedia- Person-centred planning (PCP) is a set of approaches designed to assist someone to plan their life and supports. It is used most often as a life planning model to enable individuals with disabilities or otherwise requiring support to increase their personal self-determination and improve their own independence.
PCP is accepted as evidence based practice in many countries throughout the world. It is most often used for life planning with people with learning and developmental disabilities, though recently it has been advocated as a method of planning personalised support with many other sections of society who find themselves disempowered by traditional methods of service delivery, including children, people with physical disabilities, people with mental health issues and older people[
James who is Zach’s transition support worker is visiting Scott House next Thursday to see thezachproject in action and will hopefully be able to report back positively.
I am already thinking about what will come next for Zach…I don’t like to let the grass grow under my feet!
My hope and dream is to purchase a large house with maybe six bedrooms, large downstairs living accommodation too and a big garden. The house would be used for adults with learning disabilities as part of their journey towards semi independent living. The house would have all that our homes have, a well equipped kitchen and so on. The adults would visit the house regularly for short periods of time, maybe two nights to begin with and increase as their confidence grew. While at the house they would be supported 1:1 or 2:1 with their own support worker and learn daily living skills. It would be in effect I guess a sort of halfway home between home and semi independence.
To do this I need to either win the lottery or find an investor, I need to give it some serious thought.
It was Zach’s 19th birthday last Friday. I felt we all deserved to celebrate, the second half of the year has been hard work, battling against the authorities and then setting every thing up. Zach has taken to his new setting with aplomb and even had some Reiki healing (his first ever foray into this very relaxing therapy) on the morning of his birthday with Sarah Perrett who is a reiki master and also does amazing crystal massages, on top of these skills she is warm and friendly, calm and very smiley!
For anyone interested in getting in touch with Sarah for treatments themselves her contact details are 07519 178766.
She can also be contacted through Natural Health which is based at Old Cross in Hertford. Natural Health is run by Julie Goodwin, over the years the shop and centre has just got better and better due to her passion and vision. Sarah is one of any number of therapists who practice from the treatment rooms there. The shop also offers a huge choice of supplements, food and all things natural. It is an Aladdins Cave with staff who know the products very well. There is a branch of Natural Health in Welwyn Garden City which is now open 7 days a week.
Natural Health are contactable on 01992 550101 or Hertford@naturaltherapycentre.co.uk.
For years I found Zach’s birthday a very tricky day, it bought back memories of a traumatic birth and also of hopes and dreams which we had for our son before the reality of autism kicked in. That isn’t to say that I no longer have hopes and dreams as they are very much alive but they have changed, what I want for Zach in his life is for him to be loved, fulfilled, safe, happy and to reach his full potential and keep learning.
Presents are a funny one for someone with autism. Over the years Zach has grown to really enjoy opening presents but when he was young, his pile of carefully chosen and lovingly wrapped presents would often go unopened for weeks. I would try to cajole him into opening them, giving them a shake or lifting the corner but they were completely blanked and if anything my efforts made Zach ignore them all the more. Every birthday and Christmas I would wrack my brain for something he would like, and go to great lengths to get whatever caught my eye and although I knew it wasn’t a personal slight it was hard.
Zach went to a mainstream playgroup which was local to us, he was largely ignored by the other children as we were by the parents with the exception of one little girl called Molly. Molly befriended Zach, she lived and still lives (when she isn’t at uni) at the bottom of the street we live on. Molly really mothered Zach at playgroup, she took him under her wing and made sure he was okay. Sometimes Corrine and Molly would come round to see us or we would see them in the street and Molly would watch Zach and then say ‘I think that he wants….’ Molly had a heart of gold and was the only child to invite Zach to her birthday party of all the children in his class. Molly still always has a beautiful smile and friendly word for Zach when she sees him, it means a great deal.
As the years go by and we see other young people of Zach’s age gaining independence, excelling at sport, planning their future, with their first girlfriend, getting exam results, learning to drive and then going off to University it really hits home hard how none of this will happen for our son. Although for us these things aren’t easy we have to learn to cope with them (this can certainly be more difficult at some times than others) and congratulate our friends and neighbours children for their achievements while they do the same about Zach.
Last year for Zach’s 18th birthday we had a big party. We hired a lovely village hall and invited all the family and Zach’s favourite people. We had a brilliant DJ who we gave a list of music which would go down well with Zach and had a big bouncy castle outside.
Zach absolutely loved the evening, he knew that he was the star turn and that everyone had come to wish him a happy birthday and he relished in it! Maybe we should do that every year!
As we have with birthdays, we have also come to know our Christmas will not be what we first imagined when we had a son. When Zach was tiny we lived in West Sussex in a small village and every year the rotary club would make a sleigh for a Father Christmas to ride and go around the whole village seeing all the children.
I have always loved Christmas, seeing friends and family but it is a really magical time for children. All the glitter, anticipation and wishes and of course the magical man himself, Father Christmas. When I took Zach to see the villages Father Christmas I felt really emotional, thinking of all the magical things I could do for Zach and how special Christmas would be now we had a son.
You can only imagine just how hard those first Christmas’s were! One year as novices in the autism world we decided to hide all Zach’s toys that he played with and loved in the boot of the car so that on Christmas morning he would surely play with his new toys……the toys didn’t stay in the boot long!
Christmas is though, possibly Zach’s favourite time of the year. He likes us having friends and family around, he likes the sound of laughter (yes! we only laugh at Christmas in our house, and that is only if we have company 🙂 ) and I like to think he likes the efforts I make with decorating the house. He attacks his present sack on Christmas morning and almost without exception ignores the expensive gifts and goes straight for the stocking fillers.
Life isn’t always what we may have thought it would be, sometimes it is easier to accept this than others when we just yearn for some normality in our lives.What we all want is for our children and ourselves to be happy and I guess to live in some sort of peace. There is no point in inflicting norms on our children which they do not understand or relate to.
Zach’s birthday this year was a good one, we are happy that he is happy and I guess it is hard to ask for more than that. 🙂