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.



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.


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.


Our next event is:-

The Zambo Christmas Special

21st December 2016


£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! 🙂