It has taken me a while to want to write as I feel I am inside a Sci-Fi novel as a character and there are millions of us all in this same book.

So where do I start?

We were so lucky to have a short break in Dubai in January spending time with our friends who live there, however watching the news and reading the papers we could see something was kicking off but did not really take the news in or comprehend what was actually taking place in China.  When we boarded our plane back to the UK there were a number of Chinese nationals onboard with face masks on and still, I thought WTF?!

The last time I saw the boys was in February and that feels like a lifetime ago.  Jared and Jack have coped incredibly well and that is because they have an amazing care team supporting them twenty-four hours a day.  These unsung heroes are there all day every day trying to fill each new day with things to do, and to engage and interest them can be a challenge for anyone, but knowing that your sons have short attention spans, can be prone to having an anxiety attack or a seizure and need immediate assistance from someone who is not their Mum or Dad can be challenging, but not for these people caring for my sons, they have become Mum and Dad filling in when we are not there, and calming and reassuring them when they do not fully understand what is going on must be incredibly difficult.  Jared has some idea of what is going on in the world because unfortunately he does watch the news.

Jared’s care team showed him how we could FaceTime each other which has been brilliant and we do this weekly and seeing Jared has helped me knowing he is safe and secure in his home he shares with his care team and the other three boys he lives with.  We normally have 15 minutes of laughter via the link with my husband Dave being silly and Jared calling him names – his favourite being plonker!  However, he did become extremely anxious one evening after watching the news and proceeded to try and FaceTime me over the course of 4 hours along with all his other Facebook friends who were then texting me to see if Jared was okay.

Jack seems to have actually coped a little better, even though he is non-verbal it would seem he has managed to stay in a ‘happy place’ mentally and again this is because of the brilliant care provided in his home setting.  So, I would really like to big up http://www.cavendishcare.com and @Mitchells Care Homes Ltd.

So how have I been……

Each morning feeling as if my throat is sore, or I have a cough, or I have a fever – actually I have none of these, but every day I wake up and think is this it am I getting the virus today, all irrational thoughts, but how many people are thinking like me?

My own mental health has been a challenge, and my feelings are extreme at the moment.  You almost feel a physical pain and it’s like losing a piece of yourself.

I am constantly thinking will I ever see all my sons, my Mum and Dad, and my extended family again.  If I die no one can come to my funeral – why am I thinking like this, I won’t be alive to know anyway!!  I know my spirit will carry on, but no one will be able to say goodbye to me.  I know it’s me grieving as I have had my normal life taken away and a good friend sent me a link which is an extremely good read and makes you understand that the discomfort you are feeling is a form of grief.

https://hbr.org/2020/03/that-discomfort-youre-feeling-is-grief

So, some facts on mental health…….

One in 4 will experience a mental disorder in their lifetime

Our happiness curve dips to its lowest point between the ages of 46 – 55, I think its longer?

Unlike previous generations we are now talking about it – thankfully.

Anxiety can come out of nowhere it can bite you big time on the backside and leave an impression that will stay with you forever.

Don’t feel afraid, talk, ask for help if you can, do not be alone in coping with these feelings, by talking you will be amazed how many others are in ‘your’ boat or are feeling just like you.

Depression is incredibly common – I don’t mind being common!

Feeling blue is pants, although blue in spirit world means to protect, just like the NHS.

Constant bad news and negative reporting every day, even when on the news they said the numbers seemed to have slowed……. Good news?  No, the reporter then said do not believe this?! The news reporters then discuss the rise of mental health problems in our society and how the news is affecting us!  Jesus what is wrong with the press they are actively contributing to my mental health state.  And the latest bit of news – Ministers were warned the ‘stay at home’ messaging might have been too successful today amid fears ‘coronaphobia’ could stop the country getting back up and running – you could not make this up people!!!!!!

Facebook is also full of fake news so that I am now on it for 30 seconds before I have had enough, and Messenger and WhatsApp where you are sent ‘funny’ jokes, songs or films to watch but they are not funny.

So, what have I been doing to curb my own anxieties?

I absolutely love cooking, so I started a little business cooking and delivering freshly cooked meals to the elderly and families in and around where I live in Saltdean, Brighton just as COVID was exploding into our world.  I thought it might be a non-starter, but I now have a list of customers who are ordering weekly and this has helped my mental health a great deal.  Knowing my customers now rely on me to bring them freshly prepared meals is stopping me from completely breaking down and Dave my husband says he can tell I am in my ‘happy place’ when I am cooking as I always have a smile on my face.

So, the future……

 I am incredibly scared that when the lockdown ends it will it be too soon, and should we wait a little longer to ensure that we are actually all safe?  I would rather wait knowing that when we can finally be ‘free’ again we will be safe, our children safe, our families and everyone else safe.

What will we learn from all this time on our own?

Will the world be a better place, or will we just revert back to how it all was, not thinking of others, and still too much time spent on our phones and other gadgets?

Will it make us all better people?

Will we be kinder, more tolerant, grateful, happy with ourselves and others?

Everyone keeps saying we are all doomed with our economy but the whole world will be, we can start by supporting small local businesses, and being grateful for those that have supported our communities in these awful days we all had to endure.  Our local butcher, fishmonger, fruit and vegetable shop and the local pharmacy.  These people have all been incredible and have also provided home deliveries to people who are vulnerable and self-isolating – these people are stars.

And our NHS, well what can I say, on a personal level Jared has been in the ICU on more than one occasion and also the high dependency unit due to his seizures and thankfully has not needed their medical assistance during these strange times.  The strength, composure, support, vulnerability and sheer determination the NHS have shown us all during this crisis has been incredible and when we say THANK YOU every Thursday evening at 8pm by clapping outside our houses it just isn’t enough.

And finally…..

Thank you Captain Tom Moore for just being you, I don’t know you but feel I do as watching you walk all those steps for the NHS and wanting to raise £1k and who ended up raising over £32million you are truly a legend.

So, I like to end with song lyrics and one of my favourite bands the amazing @Foo Fighters with the @Live Lounge Allstars.  This song has been released as a single, with profits from UK streams and downloads going to Children in Need and Comic Relief to help British people affected by the coronavirus crisis.  Profits from international listeners will go to the World Health Organization’s Covid-19 Solidarity Response Fund.

Times like these

I’m the one that drives away
Then follows you back home
I, I’m a streetlight shining
I’m a wild light blinding bright
Burning off alone

It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again

I, I’m a new day rising
I’m a brand-new sky
To hang the stars upon tonight
I am a little divided
Do I stay or run away
And leave it all behind?

It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again

Thank you for reading me, stay safe, stay well, be kind.

What happens when I die?

Oh gawd I hear you say, what a thing to discuss so early on in 2020.

However I do think about this a lot.

My sons with Fragile X Syndrome/Autism/Epilepsy and Anxiety Disorder are extremely lucky as all three of them are in either supported living, sheltered housing or a care home.  When I say care home, it’s not full of elderly people, its Jack living in a cottage with two ladies with 24 hour care – and we are so grateful for all the support each of the boys receive.

I started thinking about how the boys care teams would explain why they cannot see me anymore and how this will be managed when I die?  How will it be handled?  Will Elliot my son who does not have this shitty disability be left to try and explain to his brothers that Mum has gone to be a star in the sky?

A star in the sky you ask??

Jared gets quite fixated about people who die – usually someone famous, although we have had special people in our lives who have died so trying to explain to him what happens has been quite difficult.  However telling Jared that when a person dies they become a star in the sky has helped him enormously to cope with this sometimes difficult conversation.  He often sits outside in the dark looking up at the sky, talking away to himself and saluting upwards.  When I have asked him what is he doing he says he is talking to the stars and praying, and then reels off everyone he is talking to, including Nan’s, Granddads, Ayrton Senna (his favourite racing driver) and our special friend Ronnie – whom he adored.  All these people have been gone for some time but Jared still has them all in his heart.

Jack on the other hand cannot comprehend initially with what he is being told, it takes time for Jack to think about what is being said to him and then he gets it!

Many years ago he was living in a large house with ten other young adults all on the Autistic Spectrum with other complex disabilities.  One of the boys from the house managed to escape and jumped from a motorway bridge and died.  Staff discussed this terrible tragedy in front of Jack assuming he did not understand – he did.  This led to having a direct impact on Jack’s mental health, and his well being spiralled out of control and led to him having a breakdown – he was 25 when this happened.  The reasons for him having the breakdown are complex but perhaps if medical and psychological help and support had been given when this dreadful accident occurred he may have got through this awful period in his life, but there was no support.

Jack being non-verbal and with extreme anxieties, I feel anxious myself thinking how his complex needs will be managed.  He absolutely loves coming home for his weekend visits so if they were to suddenly stop would he have another breakdown?  How will this all be communicated?

Recently I came across this website https://booksbeyondwords.co.uk/ebooks/when-somsbody-dies?  Books designed for people with learning disabilities all in a picture format.  Baroness Sheila Hollins initially produced pictures to explain to her son Nigel who has a learning disability and had communication issues (he did not speak until he was eight) and was going on an adventure holiday.

By producing pictures of what he was going to be doing he then felt more in control.  Thirty years on, Beyond Words has distributed or sold 100,000 copies of its 57 titles, which cover everything from relationships to surviving abuse. Each title involves 100 learning disabled people as advisers or authors. There are 60 associated book clubs with 350-400 members. https://www.theguardian.com/society/2019/jun/04/sheila-hollins-learning-disability-care

I know that we have all been producing pictures for our sons and daughters with disabilities to enable them to understand and communicate what is going on in their world, but I did want to reiterate how important this visual tool is to them.

So back to my first paragraph – I have decided that I need to live to at least 150 so that I can ensure that all my boys know exactly what is happening to me.  If I do get an illness that is going to be lengthy at least I can explain what is happening to their Mummy, but if I go suddenly………………………….

To the well organised mind, death is but the next great adventure.  J. K. Rowling

To live in hearts we leave behind, is not to die.  Thomas Campbell

Happy New Year everyone and here’s to a very healthy, happy 2020

My Mum is a carrier of Fragile X Syndrome, my Grandpa was also a carrier who passed it onto my Mum and she passed it to me…… now sadly, Mum has the onset of Dementia.

My Mum has always been a free spirit and has always been a bit of a nightmare too, especially when my sister and I were growing up.  It was easier for me as I was nine years older but sometimes for my sister it was tough not having our Mum around.

One of my earliest memories of me and my Mum was sitting in Hyde Park together – she was so beautiful, and always got the stares from men, she also revelled in it.

When she was 41 she was diagnosed with pre-cancerous cells in her womb so decided to have a hysterectomy as she had now left my Dad and was living in Oxford, the owner of a pub and guest house with her partner John and did not want any more children so this was an easy decision to make.

In 1979 when you had this op you were advised not to do anything for at least 12 weeks, not my Mum, she decided to tour around Spain in a campervan with friends just 4 weeks after having major surgery.

Years later, my Dad and Mum started seeing each other again, first of all going out for a meal then they had a few holidays together and then my Dad asked my Mum if she would like to get married again – so they did!  Mum and Dad got remarried in 2001 and I am not saying that they fell in love all over again but they were happy and content with each other which to me is very important.

Sadly Dad had a stroke in 2006 and Mum became Dad’s full time carer as he had been left incapacitated with no language or the use of his right side.  Mum cared for Dad until she fell whilst walking and broke her leg so we had no option but to put Dad into a care home where he still is, and Mum has been visiting him every week since until……..

It all started at Christmas, Mum who is now 81 had come to stay for the holidays, within 10 minutes of arriving asked when she would be going home.  Another 10 minutes went by and the same question was asked.  Mum then continued to ask this same question over and over again during her stay with us and whilst I thought it a little strange parked it to the back of my mind as the boys were home and over Christmas it’s always an anxious time for us all.

Thankfully I had already made the application to become Mum’s Power of Attorney for both health and finance and without this the implications of trying to manage Mum’s affairs and speak with health professionals on her behalf would have been so much harder.

Mum continued to show signs all was not well when in early spring she decided to drive to see her sister, a 40 minute journey by car, two hours later I received a call from my cousin asking if we knew where Mum was as she was due to have lunch with her and the family and she had not arrived?  Another two hours passed and I managed to finally get hold of Mum by phone, she said she had got lost and then decided to drive home again, forgetting to let her sister know.

I then kept getting phone calls, I am not talking one or two, Mum called me sometimes 12 times a day.

My purse has been stolen!

She contacted the police each time, and I am not sure what they made of all the calls.

Her purse had not been stolen she had just placed it somewhere and then could not remember where she had put it.

Another call – my car has been stolen? 

Where were you Mum?  I was in the little supermarket and when I came out my car was gone?  Are you sure you did not leave it somewhere else.  NO!!!!!  I am not stupid I know exactly where I left it.

We had to report the car stolen.

A week passed and we were trying to piece together her movements, we remembered that Mum had gone to the post office so we checked the local carpark nearest to the shop and there was her car, safe and sound.  I then took her car keys as I was extremely concerned that she would drive and cause an accident, she was not happy with me, which is a slight understatement – she screamed and swore at me down the phone every day saying she was perfectly fit to drive but then never remembering she had called me just five minutes earlier each time.

I am now really worried……

So I got Mum a doctor’s appointment and in early April off we trotted to see the doc and see what he had to say about her memory loss.  Mum kept asking why we were seeing her doctor and I explained as gently as I could that as she was forgetting things it would be a good idea to get her checked out.  The doctor ran a few tests linked to the Dementia memory test assessment and it was clear that Mum had a problem, including not knowing what day it was, what year we were in or family birthdays.  The doctor then did a blood and urine test and we returned home until we heard more.

Within 24 hours we received a call to say her calcium levels were extremely high (it’s called Hyperparathyroidism) which could cause the memory loss (delirium) and also the risk of stroke or heart attack.  Within days Mum was admitted to hospital and it was clear her calcium levels, were rocketing due to the very random conversations we were having but we were also worried that this was the start of dementia too.

Mum spent two months in hospital with the medical team trying to get her calcium levels down and because it was quickly established she would need full time care a battle also commenced with social services.

So here we are from when Mum went into hospital in April to now the end of August.  Mum is in a wonderful care home who specialise in Dementia care which is just five minutes from our house in Saltdean.  She has her own ‘proper’ front door and a small room but with only 20 residents and a wonderful care team on site she is overall happy and more importantly safe.  I can visit anytime I want and she can have her very elderly dog Duffy (16 years old) to visit as often as she likes too – so perfect.

We still have telephone calls only now she asks where her house keys are.  She doesn’t need any as the front door is locked otherwise I am sure she would escape.  She also asks how she is going to pay her hotel bill as she has no money, which in a way is another compliment to her care home.

Mum is fantastic in the mornings and this is when I go to see her and take her out, however in the afternoons her memory fails @dementiauk.org call this ‘sundowner’ when the brain becomes tired and then the memory fails.  Mum has also taken to swearing……. What more can I say as she never used to do this but apparently this is also common with Dementia patients, unlike me who does have a ‘potty mouth’.

Interestingly, out of everything she has forgotten the one memory she does retain is my Dad, and she worries she has not visited him and talks about him all the time.  It’s unfortunate that Dad is in a care home in Hounslow so we cannot visit every week but we did visit today and both were so pleased to see each other, sadly both cried when I said it was time to go home to Mum.

Another interesting piece of information – My Mum’s sister also has Hyperparathyroidism so I wonder if this is related to @Fragile X Syndrome. https://www.nhs.uk/conditions/hyperparathyroidism/

I mentioned earlier about applying for Power of Attorney for Mum and I really urge everyone to think about this – not when you think you are getting old, but now whatever age you are.  It really does make life so much smoother when dealing with banks/building societies, pension companies etc.  Sadly none of us know what’s around the corner and if you have an accident that leaves you incapacitated or a stroke/heart attack your loved ones will have so many problems trying to arrange everything for you. Since the Data Protection Act was update in May 2018 it is now a minefield so I urge you all to just get on and do it.  http://www.ageuk.org.uk

You know I like to end my blog with either a poem or song lyrics, so this is for my Mum who loves this song and for all other parents, sisters, brothers and family members who have been diagnosed with Alzheimer’s/Dementia.

Midnight
Not a sound from the pavement
Has the moon lost her memory
She is smiling alone
In the lamplight
The withered leaves collect at my feet
And the wind begins to moan

Memory
All alone in the moonlight
I can smile happy your days (I can dream of the old days)
Life was beautiful then
I remember the time I knew what happiness was
Let the memory live again
Every street lamp seems to beat
A fatalistic warning
Someone mutters and the street lamp gutters
And soon it will be morning

Daylight
I must wait for the sunrise
I must think of a new life
And I mustn’t give in
When the dawn comes
Tonight will be a memory too
And a new day will begin

Burnt out ends of smoky days
The still cold smell of morning
A street lamp dies, another night is over
Another day is dawning
Touch me,
It is so easy to leave me
All alone with the memory
Of my days in the sun
If you touch me,
You’ll understand what happiness is
Look, a new day has begun

Songwriters: Andrew Lloyd Webber / Trevor Nunn / T.S. Eliot / Zdenek Hruby

 

I love celebrating a birthday, whether it’s mine, Dave’s, the boys or family it’s a great way to spoil someone with gifts you know they will love….. hopefully!

However parents with Autistic and Fragile X children will know that celebrating a birthday with them can be a challenge.  For a start they really do not like the ‘Happy Birthday song’ so don’t even attempt to sing it unless you want a meltdown or slamming doors, or worse a punch because your child is trying to get away as quickly as possible.  We have celebrated many birthdays where it’s almost been silent because we don’t want to get the boys even more anxious than they are.  THAT song has triggered many anxiety attacks over the years so we just don’t sing when the birthday cake comes out.

Buying presents is another headache.  I mean what do you get a man that still loves Thomas the Tank Engine, Toy Story and other Disney films, but also loves motor racing.  The one thing that we do love in this house is the Apple iPad, it has been a revelation to Jack and is also a great teaching tool.  He will often repeat a sentence from a film and is now using words appropriately when I ask him something, such as:

Me:  Are you ok?  Jack:  Yes I’m okay thanks!

I know there are debates on seeing children using iPads in restaurants or looking at their parent’s phones but for me they have been a life safer.  If I am standing in a queue with Jack I will give him my phone which immediately calms him down and can stop an anxiety attack.  We have two iPads in this house, one that was a gift to me quite a few years ago and one that my friend Rebecca gave to Jack as a back-up.  We could do with at least two more to ensure that when the battery runs out on one we have another one ready to be used but they are so bloody expensive it’s never going to happen so if you have one spare please do let me know!

Jared likes a party, he likes dressing up and having a good time and we have celebrated those milestones – 18, 21 and 30 with family and friends, and he has enjoyed himself, but no birthday cake or ‘that song’.  With Jared in particular we have to constantly reassure him that he is going to have a great time and that it’s only his family and friends that he is seeing so we know once people arrive he will have a fab time.

I remember on his 18^th birthday Jared had decided he wanted a ‘Scottish’ themed party as he was obsessed with Scotland at the time – don’t ask me why!  He wanted everyone to wear something tartan and all the men to wear kilts.  On the day in question England were playing in the world cup and it had gone to penalties, Jared was very anxious and decided he wanted to ‘cancel’ the party because we had lost our match on penalties.  He stomped upstairs and I followed and told him I was going to send everyone home but he did need to put his kilt on so I could take a picture.  Well he did and then guests arrived and he absolutely had the most amazing time ever.  This is the only time I have seen him a little drunk, as we had made Pimms and he thought it was Ribena…….

Another funny moment with Jared was when we had all gone to Texas to stay with our friend who was living there at the time.  July 4^th (Jared’s birthday) is a holiday in the USA and we had gone to a BBQ with live bands, Jared asked why there was so many people there and we told him it was because they knew it was his birthday, he believed us and thought it was amazing so many people had come to see him… but no song!

Jared and Jack both have their birthdays in July and Alexandra was also a July baby, so for me it’s a time for celebration and also reflection, mourning my baby girl who never grew up.

So no Happy Birthday song, no cards for Jack – he puts them straight in the bin, and I am still trying to think what I can get them both.

If I could choose their song then it would be the Beatles…..

You say it’s your birthday

It’s my birthday too

You say it’s your birthday

We are gonna have a good time……

https://www.youtube.com/watch?v=Cs5vUfddkT8

 

 

 

 

 

My daughter Alexandra died 38 years ago today, and I still think about her every single day.  My daughter was beautiful with the fairest skin, the blackest hair, black eyes and rosebud lips.  For anyone who has lost a child the ache in your heart never leaves you, it remains in one corner and the ache never goes.  I often wonder what she would have been like if she had lived, I never think of her as disabled although if she had survived she would have been severely impaired and in a wheelchair.  However for me I see this grown woman with long black curly hair, independent, a free spirit and loved by all.  Many years ago I heard the words to a song and have always wanted to sing them to her – although I am an appalling singer I think of her when I hear the words so today for you Alexandra my beautiful angel these words are for you and all our babies who are beside you in the clouds……..

A few facts – Epilepsy is a common condition that affects approximately one in 103 people. It is usually diagnosed in childhood and in people over the age of 65, but it can affect anyone.  Jared did not develop this condition until he was 18, and the first one he had went on for over 2 hours and he was put into an induced coma.

The only visible symptom of epilepsy is recurrent seizures, and these are caused by too much electrical activity in groups of neurons in the brain. How a person behaves during a seizure will depend upon the area of their brain that is affected.

There are two main types of seizure – generalised and focal.   Generalised seizures involve large areas on both sides of the brain, whilst focal seizures affect a specific region. www.epilepsyresearch.org.uk  www.epilepsysociety.org.uk

Jared has to cope with many things in his life, living with Fragile X Syndrome, Anxiety disorder, Autism and Epilepsy but this does not stop him from living life to the full.

These past few weeks have been particularly challenging as Jared has had two spells in hospital.  The first, 4 weeks ago when he had what is called cluster seizures, (having a number of seizures within a few hours).  Unfortunately when he arrived at the hospital he was very poorly as he also had a very bad chest infection and they also discovered he had a liver infection too.  However we can still find a funny moment even when we are extremely worried, as Jared was asked how much alcohol he drank because of his liver infection!!  The most Jared has ever had to drink is a very weak Pimms nothing else…..NADA! 

Four days in hospital is a long time in Jared’s life as he hates being there.  The constant requirement to tell everyone who is looking after him that he has special needs and how they manage this can be exhausting.  He does carry something called a personal passport which details everything about him, his likes, dislikes, his disabilities, and what drugs he takes on a daily basis.  Jared is extremely fortunate that he lives in a house with 24 hour care and therefore has one of his care team staying with him during his time in hospital.

Many years ago one spell in hospital resulted in me making a formal complaint.  The nurse who was looking after him refused to give him his drugs, why I asked, well he might hit me?!  Why the hell would you think that?  Jared is the sweetest, kindest man you will ever meet.  Yes he ‘fires’ everyone in hospital but that is his way of saying he does not want to be there, but has he ever lashed out, no.  I can appreciate that some adults with special needs have mental health issues as well and explaining to an adult who is also non-verbal can be challenging, but please do not tar all adults with disabilities with the same label.

Thankfully hospitals have come a long way in managing and caring for adults with disabilities and I am thankful that we have the NHS who on the whole provide a wonderful service whilst staying in hospital.

So this week unfortunately Jared had another spate of cluster seizures during a 24 hour period, 5 in total and one lasting over 12 minutes.  Being rushed into hospital at midnight and then receiving a call to say where he is, is frightening as you debate with yourself whether you should make a 20 mile journey and be with him and then the guilt sets in.  I know he had someone with him, I know they love him and want to make sure he is okay but I did beat myself up over this and continue to do so.  Thankfully, after running tests and all coming back negative, Jared was allowed home the following evening.  They have now upped his drugs and I think I can hear him rattling as he is now taking 7 a day, but he never complains, he is always smiling, and continues to pull Dave’s leg about the footie.

I think my anxieties from Jared having epilepsy stem from his sister Alexandra also having this, and which eventually killed her. Jared is prone to having seizures during the night when he is asleep and this gives me nightmares. I know he has a monitor in his room but I always have that ‘what if’ moment and it never leaves you.

I do want to say a massive thank you to Jared’s care providers http://www.cavendishcare.com a wonderful company who provide excellent care with a family feel in each house.  Jared has an exceptional life at his ‘other home’ living with three young men and the care team who ensure that all the boys have their days filled with activities, fab holidays and great days out.

Today its Saturday and just 36 hours after Jared went through hell, he is now chilling and waiting for the rugby to come on. So happy weekend everyone.

http://www.fragilex.org.uk  |  http://www.autism.org.uk  |  http://www.mencap.org.uk  

It’s that time of year when all parents of disabled children and adults become anxious not knowing whether this year they will enjoy the festivities including the lights, presents and visitors.

It is difficult to explain to Jack that it is not Christmas in October when the stores start putting up their Christmas displays, how do you explain to a non-verbal man that he has to actually wait another 11 weeks before he gets presents?

I always remember one year when Jared and Jack were 10 and 8 we were approached by Sky News who wanted to do a story on us as a family about how we cope with children and their disabilities at Christmas.  I thought it would be a lovely article highlighting the struggles, anxieties and sometimes meltdowns we face so agreed to do the article.  The first problem was they wanted to film us in November with our tree, decorations and presents on display!!  I patiently explained this was never going to happen as Jack in particular would not understand that this was in fact ‘make believe’ and would have to wait another 6 weeks at least before Christmas arrived.  Eventually we compromised and at the beginning of December the film crew arrived to film the report.  On the day I was interviewed we discussed the challenges we faced as a family with special needs children at Christmas time.  The boys on the day were troopers and Jack was actually on his best behaviour, with a little bit of bribery by letting him watch Thomas the Tank Engine, which he stills watches to this day and he is now 28.

I am always amazed by Jack though, when you think the meltdown is going to come it doesn’t, and in his own way I think he enjoys the idea of Christmas.  He always goes on the hunt for presents as soon as he returns home looking for anything with his name on which we hide as one year he managed to find the presents and then proceeded to open all the ones with his name on.  What is particularly astonishing about this is we have a Jake in the family and also a John but he left those presents untouched.

Juggling how we all sit around the table is another stressful challenge for me, as Jack wants to eat on his own, Jared wants to be near to us but not beside us, and Dan, well he has a chat with himself so that he can cope with sitting in close proximity to his family.  The boys arrived home yesterday for the Christmas holiday and we somehow managed to get everyone near to each other for dinner without any upsets and it seemed to work so fingers crossed for Christmas lunch.

It may take Jack two days to open his presents because he has a system, he shakes and feels each one then decides whether it is something he wants and will then open it, other presents are discarded and eventually he may open them or given a little help from one of his brothers.  Jared on the other hand will open everything in a rush and then sit and admire his new presents and Dan will open his when no one is looking at him as he really does not like the attention.

So I am prepared, everything is wrapped, the food is prepped and the wine is chilling, so all that is left to say is have the most wonderful Christmas, thank you for reading my blog,  and happy New Year.

Oh and one piece of advice, if it all gets too much, go into the bathroom or a room as far away from everyone as possible, take a towel scream into it, have a quick cry take a deep breath and then you will feel so much better.  Alternatively drink more wine!

You yourself, as much as anybody in the entire universe, deserve your love and affection….. Buddha

Last year I was asked by Jared’s house to put together his end of life care plan, and was initially shocked to be asked to do this when my son is still a young man.

How can I even think about this?  It’s not something I want to do or even give breath to but it has to be done at some stage.

Questions raised asked for best friends, favourite family members and support workers names, burial or cremation, and where would Jared like to die?!

So it then got me thinking…..

I hope that I go to another world (dying sounds so cold and final) before my sons so who will tell them that I have gone? 

How will this be handled?

I would hope that it is handled with dignity, kindness, and lots of thought and care.

However there are some common myths when considering telling a person with learning disabilities that someone in the family has died.

They won’t understand

They don’t experience grief

It would upset them unnecessarily to be told this news

In reality they do experience grief and my son Jack is proof of this.

Jack used to live in another care home and sadly one of the boys he lived with died. The young man was the only boy that Jack would like being around and would often sit on the boys bed to watch him play a game.   The death and what had happened to this young man was discussed in front of Jack (not intentionally) but unfortunately it clearly affected him greatly and I believe was the beginning of his downward spiral of having a mental breakdown.

I believe his way of expressing his grief was to become more anxious, irritable, with challenging behaviour, changes in his sleep pattern and eventually becoming aggressive towards me in particular.  I now feel this was his way of trying to tell me how he was feeling and crying out for help.

So how do we tackle this sensitive subject?

As Jack is non-verbal this will be difficult.

Jared has a good understanding of dying and he has had people in his life who have died during the past few years and I have talked openly with Jared about this.  I have always spoken about there being a better place in the sky where we all go to, including our animals.  Jared will often have a discussion with me where we talk of Nan and Granddad playing cards with Ayrton Senna (his favourite racing driver) and our dogs who have died playing with his sister Alexandra in a beautiful garden where the sun always shines.  If all this sounds cheesy I don’t care as when my time comes if his brother Elliot (who will probably have this task) can say this to him I believe Jared will be sad but will understand I am with everyone that I have loved and lost.

So whoever does get this job, please don’t do the following…..

Mummy has gone for a long sleep and won’t be waking up – I can imagine both Jared and Jack never sleeping again!

I’ve gone to a better place!  Jared and Jack may think I am coming back from ‘this better place’ at some stage!

Keeping everything from Jack may cause another breakdown, but how to tell Jack is the million dollar question?

And…… I still haven’t written Jared’s end of life care plan.

As Buddha says

Understand that you own nothing,

Everything that surrounds you is temporary,

Only the love in your heart will last forever