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.

 

 

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