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. 🙂