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.

 

 

 

 

 

 

 

 

 

One month….

 

thezachproject has been live for a whole month!

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.[1] 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.[2] 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.

Have a great weekend everyone 🙂 x

Something to celebrate…

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.

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Ignoring the expensive stuff and going 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. 🙂

 

 

 

 

Stuff you just couldn’t make up!

I don’t have much to report to you on The Zach Project, we have received the draft copy of Zach’s EHCP which hours of work went into and wonder whether it is fit for purpose because it is totally aimed at Ambitious College….anyway I am going through it with a fine tooth comb while John is doing a comparison of costs to demonstrate that the The Zach Project is financially viable.

In the meantime last Wednesday Zach bit my mobile phone. The screen shattered and the camera lens, I imagined it would be easy enough to fix!

I found a place nearby and was told that it needed a new screen and also a whole back as the camera lens is incorporated in that, making the cost £100. The nice chap in the shop said he would get the parts in and it would be a few days.

On Easter Monday Zach bit his ipad and the screen shattered into lots of pieces.  We have tried just about every robust case on the market and have yet to find one that is totally Zach proof. I have a large box in the loft which is full of cases which have not been up to the job, I could probably open my own shop selling ipad cases which are tough, just not that tough!

Zach’s latest ipad and we have had a few, is an ipad air 2 which before this morning I didn’t realise is not straight forward to replace the screen on making it rather expensive. The ipad was purchased last October so is not quite 6 months old.

Apparently the cost of a new screen is £200! and the shop would need to get a screen in as they don’t stock them. Zach is on Easter holiday and I was grasped by panic when I was told it would take a few days! Zach’s ipad is an integral part of his down time at home.

The chap in the shop said he would buy the ipad air 2 from me, he would give me £100, the cost of my replacement screen and back of my mobile phone, which he is still struggling to locate parts for.

Put on the spot and with Zach being on holiday I decided to go to John Lewis and buy a bog standard ipad air (which the cost of replacing the screen is just £50)

The bog standard ipad air was £379. When I got home from John Lewis I checked our home insurance policy to find that our excess is £150 as I was still struggling with selling the ipad air 2 which cost £479 for £100! However as I said it was going to cost £200 to fix, sorry if your head is reeling with all these figures.

Despite having at least 4 brand new cases in the loft, not one of them fitted!

I cobbled together one of the old armor-x cases (which cost £60) and had to pad it out with bubble wrap to accommodate the ‘air’ aspect and Zach was very pleased to see it when he came in however…….

In the last 6 months we have purchased

1 ipad mini (for Zach to use at home as a communication aid) @ £219

An Armor-x case for the ipad mini @ £60

The Armor-x case screen protector was not sensitive enough so

A Griffin protector case at £52.00

An ipad air 2 @ £479

An Armor-x case @ £67

The Armor-x case then ripped so

2 x Otterbox defender @ £92

1 x Beetle defender @ £18.70

Repair to my Samsung mobile @ £100

An ipad air @ £399

and I just had to order a new case for the ipad air at £49

Bringing us to a grand total of £1535.70

It is a well known fact that bringing up a child/young person with Autism or another disability costs 3 times the amount it costs to bring up a mainstream child/young person and I am pretty sure these figures were calculated before the advent of ipads and mobile phones.

And so that is another nail in the coffin of my extension, I almost hope that John doesn’t read this as it will be at least another two nails in that coffin if he does!

I am hoping that in my next post there will be no more Apple/Samsung related stories and I will have more news of The Zach project for you 🙂