Just another ordinary day

This morning began just like any other with Jack bursting into our room demanding to know where his underpants were, we go through this every single morning like I’ve hidden all his pants deliberately or am wearing them all in bed . Find several pairs of his special seamless pants ( he has decreed that ordinary pants are ” too squashy ” and will now only wear afore mentioned seamless undergarments) of the 5 colours that he was presented with he made his choice. Crisis averted. Ian appears with a much needed coffee which I gratefully receive. We go through our well rehearsed morning routine like a formula one pit crew , scrubbing and dressing uncooperative people whilst fielding ridiculous questions . I manage to shower with just Lucy , cooper the kitten , Gwen the dog and a toy tiger that cost £135 last Friday watching me . After I had dried my hair I noticed that the top I had ironed now had a large stain on it , I am unsure of the origin of said stain which had appeared in the ten minutes it had taken me to shower, I suspect it’s the Diet Coke that Jack was drinking but I learned a long time ago not to sniff anything in this house. I curse silently as I rummage around for a passable garment to wear to work, I briefly wonder if I could get away with wearing an old Halloween costume or my wedding dress ( the second one obviously as the first one wouldn’t fit over one leg now) to work. Thankfully I found a dress that was ironed .

Jack then began a minor riot when he couldn’t find his bag , we pulled the house apart until Ian mentioned he hadn’t actually seen the bag since Friday ( it’s that chaotic here no one noticed) today is Tuesday . Managed to track down the missing bag, one of Jacks support workers had it in the boot of her car. Jack is happy that he knows the whereabouts of his bag , he’s not so happy when I suggest that he take a Star Wars shopping bag to school, poor sod was probably thinking he would look like Roy Cropper. The school transport arrived, kids waved off, time to get to my first meeting.

My day was going really well, I was having lunch with some colleagues at an Italian restaurant as a farewell meal for one of my lovely work mates, when my main course arrived I noticed that all of my cutlery had been cleared away with the plates from our starters , I asked the waiter if I could have some more , he looked at me as if I had asked for a grilled stoat on a bun but non the less he arrived with clean cutlery and a lecture on how my small cutlery was for my starter and my big cutlery was for my main course ( his words) I tried to explain that I knew what cutlery to use but gave up, I mean this guy was looking at me like I was from a cave and quite unused to the concept of eating irons. Half way through lunch ( and being watched by the waiter who by now was surely convinced I was going to steal my knife and fork ) I received a text from Proudfoot to tell me that his Dad had taken a fall and cut his head, they were waiting for an ambulance, I called him and he reassured me that Proudfoot Senior was ok but shaken ( he is fine now ) but he is 90 so of course it’s a worry . The rest of my day passed without incident .

Upon my arrival at home I was delighted to find the ridiculously overpriced seamless socks I had ordered for Lucy had arrived, I am really hopeful that this will put a stop to her trying to flush her socks down the toilet at school. I then remember that it’s pancake day and have a minor panic , thankfully the kids have had pancakes at school so I feel less like Miss Hanigan . I ignore Lucy’s repeated requests to smell her finger , especially when she tells me it’s been up Alice Coopers bum! Jack FaceTimes his Dad as he does every night, I overhear him telling his Dads partner she is going grey, she tells him she’s had her hair done , he replied with “you should ask for your money back ” I silently cringe and decide to shower Lucy as this constant sniffing of her left index finger is starting to bother me.

After both kids are clean, medicated and in bed I collapse on the sofa with a blanket and a bottle of wine , I finally manage to say hello to Ian and we catch up on our day. We are both exhausted. No doubt we will be in bed by 9:30 hoping for a peaceful night, so that we can do it all again tomorrow. Continue reading

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You have to laugh, or else you’ll cry

Life with Smith Lemli Opitz syndrome ( SLOS) is tough, make no mistake. It is also incredibly funny. Jack and Lucy make us laugh every day . After a ridiculous incident recently ( I forget what it was) I said to Ian ” you have to laugh” , he smiled and said ” you do, or else you will scream …..in your sleep”

This morning Jack asked my Mum to go home, she asked him why he wanted her to go home and he said ” because you live there” with a perfectly serious face. A few years back he was in the car with my parents, My Dad was driving and Jack was in the front passenger seat, as they pulled out of our close my Dad asked Jack if there were any cars coming , Jack gave a very emphatic No. obviously my Dad checked himself, well because you would be a bloody idiot to believe Jack . Anyway there was a ruddy great juggernaut bombing up the road. My Dad said ” Jack! There’s a great big lorry coming” , Jack looked at him and replied ” you said cars” … well he did.

When Jack was about 12 we were travelling to London in the car , on our way to Great Ormond Street hospital . Once again Jack was sitting in the front passenger seat while I drove, Ian and Lucy were in the back. Jack had a camera and was happily snapping away, however he had the flash on and cars kept slowing down thinking they had driven through a speed trap. He was trying to take a picture of a passing Asda lorry as they were his favourite at the time and he asked me to step out so he could get a clear shot, I was doing 70 and overtaking someone at the time.

Very often when we go out Lucy licks people that we stop to speak to whilst Jack sniffs them , one of my biggest fears is that one day he will move on from sniffing and be asking them to ” put the lotion in the basket” . I’ve mentioned before that Jack has hyper mobility, he can bend himself like a pretzel, on one occasion we had his legs behind his head ( God I wish I could do that) and was inspecting his bottom. I asked him what he was doing, he responded with ” looking up my boiley hole” – well of course you are Jack .

Yesterday we had a meeting to discuss Jacks future, he leaves school in a few months. Each of the professionals that had discussed Jack said he was hilarious, and he is. They also said he was charming – and he absolutely is. That sense of humour and wonderful personality will carry him through life. I mean , you have to laugh ….

Purple socks

Today is Jacks Birthday, he is 19 today.

I’ve written about his birth and formative years in previous blog posts so I wont bore you with that again. However for me Jacks Birthday is always a bitter sweet experience, many of our precious children with SLOS have so many health struggles, and I am painfully aware that some of our precious SLOS family have lost children to this often cruel syndrome , so I am truly grateful that Jack is a healthy adult . I am also painfully aware that he is an adult with many challenges.

When he was born I had so many hopes and dreams for him, I was excited to see the person he would become and what he would achieve. Would he be a Dr? Would he join the military like so many of my family? Would he be a good husband and father? I couldn’t wait to find out.

As Jack grew it was fairly obvious that he was not developing as other children do . And very slowly my aspirations for him changed. Little by little I had to change the goal posts to fit with Jacks development, while most parents are struggling to get their child into the school of their choice I was struggling to support Jack to learn to walk , to ensure he had enough basic signs to get the most basic of needs met . Worrying that if he did get that elusive place at a special school that he would cope, that the staff would be kind to him, that they would be able to feed him , that they would learn what his little noises meant. But most of all that Jack would cope with being so vulnerable in a scary world.

When I asked Jack what he would like for his birthday he said that he would like some purple socks. Nothing else. Of course we bought him the socks, but we also bought him lots of other expensive presents which he liked – but not as much as he liked the purple socks.

Today we celebrated Jacks Birthday according to what he could cope with , he wanted a coffee in Costa , so we went to Costa where we met some friends , Jack loved it. When Jack was a baby never did I in a million years think that he would celebrate his 19th birthday that way, I envisioned worrying about him as he spent the day and night drinking with a large group of friends as I had at the same age , I envisioned one of us collecting him and worrying about him vomiting in the car. It never crossed my mind that my biggest concern today would be keeping him as calm as possible and hoping he didn’t have a toileting accident.

This year is a big year for Jack as he will leave the safe world of his school and move on to day services for adults with disabilities. It will be a huge adjustment for all of us , he won’t be going to university as I had thought he would when he was born. But that’s ok, our expectations have changed. Sometimes purple socks are the best thing.

A day in the life

People often ask me what my life is like. So today I made a conscious effort to try and note the events of the day, so here goes ( God I feel like Adrian Mole)

6am woken up by Lucy , the Christmas cow and a Furby. Lucy loudly announced ” Ive done a poo” ( inner voice saying swear words) Deal with said poo whilst Ian lets the dog out and makes a coffee. Jack wakes up and barges into the bedroom announcing ” my bed is wet” f*****g great as we only have one washing machine at the moment, make mental note to chase up the washing machine repair guy whilst stripping soggy bed.

Jack starts to guzzle pop, warm Jack not to drink so quickly or he is going to be sick, too late he’s vomited all over our clean bed, feel like crying as I strip the bed and once again remember that we are down to one washing machine. FML . He’s just had his Valium so check vomit for the tablet, yep it’s there looking smug ( quickly wonder if it’s gross to fish the Valium out of the spew and re administer , decide that of course it is bloody gross , give my head a wobble and get more Valium ) . Wash and dress Lucy, jump in the shower. Rushing about trying to dry my hair and get dressed while all the while reassuring Jack that it isn’t snowing outside as he has seen on the news that it is snowing in Scotland , take him to the window and show him that it isn’t snowing but he’s not entirely convinced. In fact by the time I’m ready to leave the house I have said that it isn’t snowing 27 times. . As I left the house I noticed that my foot was sore, couldn’t really work out why so just shrugged it off and got in the car .

My journey to work was uneventful as I gradually made the switch from stressed Mum to professional person. Enjoy a good old sing in the car ( thank God no one can hear my dulcet tones as I sing along to Jimmy Somerville , yes I am that old ) Work is actually my sanctuary, no one bites me there and I can actually finish a cup of coffee before it goes cold. One of my lovely colleagues went out and got my lunch for me as I was in too much of a hurry to bring anything from home, wrote a report for Welsh Government among other things and then left work to attend a funeral. It was difficult as the funeral was at the crematorium where my Dads funeral was held 5 weeks ago, make a mental note not to cry and failed spectacularly. Discover that my foot has been sore all day because I have sodding cat litter in my sock. Back to work for another 2 hours.

Arrive home and Jack is screaming up a storm , can’t get to the bottom of what is bothering him but I am thankful that he sees his psychiatrist tomorrow. Remember that I need to go shopping , lucy is out so I persuade Jack to come with me, he of course can not possibly leave the house without FaceTime with his Dad, frantically text Mark and ask him to FaceTime Jack, he’s just leaving work but thankfully FaceTimes Jack straight away. As we are travelling to the shops we listen to ” The Rug and Bone man ” sing Human on repeat. When we get to the shop Jack decides that he can’t possibly leave the car without my faux fur scarf, we walk around the shop with Jack wearing the furry garment and attracting some strange looks but I’m used to that now. Jack decides that he is royalty or some sort of celebrity as he greets everyone he meets, now I wouldn’t mind if he just said hello but he stops and gets everyone’s life story , not in the slightest bit bothered that I need to shop and get home while all the while keeping up a steady stream of reassurance about the f*****g snow . As I’m walking around B+M I remember the puke covered bedding and the broken washing machine so buy new bedding ( feel quite cross that we have a king size bed as it’s always the hardest to find) also buy the dog a new bed as the cats have stolen her existing bed. Of course my ludicrous purchases don’t fit in the bags that the shop have so juggle it all the way to the car, it starts to rain which sends Jack into a panic , offer reassurance about the bastard snow again.

As we travelled to Tesco Jack asked me where I had been today, as I’m listing where I have been I mention the crematorium, jack immediately asked ” crematorium? Is she nice ? Who is she? ” try to explain that it’s a place and not a person whilst scolding myself for mentioning the place. So after I manage to convince Jack that we should not invite my new friend crematorium for tea we managed to do our food shopping without incident. Well apart from the moment when Jack realised his cousin Rhys wasn’t working in Tesco at that particular time ( he had gone home) and had a minor shit fit by the bananas, but no one got hurt so we won’t mention it .

Arrive home and try to carry the shopping into the house, of course a bag broke so I’m left juggling a dog bed and trying to stop a tin of custard rolling into the road, I ask Jack to call Ian but he just ignored me and went into the house closing the front door behind him , and of course it started raining again. Thankfully Ian is aware how difficult it is to get stuff into the house when the kids are there so he automatically comes out to help. Lucy has arrived Home and needs to be showered,as always there was an Oscar winning performance from her but no one got bitten so I will count that as a win. Wait 20 minutes for Lucy to roll around naked and make silly noises on her bed. Talking of beds, the dog hates her new bed and is barking at it downstairs. Try to engage Lucy in conversation by asking her what is wrong with Fox the wolf ( Fox is actually a toy husky but we won’t be pedantic about it) Lucy replied ” he’s dead. Alice Cooper shit him” quickly moving on I ask her what she has decided to name her new toy dog, apparently his name is werewolf….. well of course it is.

Manage to wrestle both children into bed, after they have taken all of their medication . Reassurance given about the bastard snow again. Finally put my pyjamas on , cant be arsed to cook any of the food that I have bought today so decide on a take away. Pour glass of wine and try to relax, wondering what tomorrow will bring

Evolution

Darwinism is a theory of biological evolution developed by the English naturalist Charles Darwin and others, stating that all species of organisms arise and develop through the natural selection of small, inherited variations that increase the individual’s ability to compete, survive, and reproduce.

Carer means a person who provides or intends to provide care for an adult or disabled child

At first glance the two statements above seem completely unrelated and probably a little bit random. But for me, and I am pretty certain many of my fellow carers , the two are intrinsically linked. My journey as a parent to two children with Smith Lemli Opitz syndrome( and all the joys and challenges that brings)  has seen me evolve from a person who had very high standards for literally everything , to a person who uses the phrase ” but did anyone die?” as a yardstick for the daily catastrophes that are my life.

I came to this realisation a few days ago whilst showering Lucy, I think I have mentioned in a previous post that showering Lucy is like a task from the Krypton Factor, or probably more accurately that old TV programme Its a knockout . Now Ian and I are totally used to this daily trauma ( and trust me when I say it is quite traumatic) of wrestling a 5ft 11 stone uncooperative person into the wet room, undressing her and then hosing her down whilst taking a zone each and washing her as quickly as we can without any of us getting injured, she bites and punches it you get close enough or stand still for too long , and as I am usually the one washing her hair and cheeky bits I am the one most likely to get bitten . If I see her mouth open I jig about like Michael Flatley , holding a sponge and the shower head and trying to avoid her nashers . One day last week after we had performed our carefully choreographed routine and Lucy was calm and happily wrapped in a towel , I looked at Ian and smiled, he smiled back and said ” babe , its like being a f*****g zoo keeper” and we both laughed and got on with the next task. It was only as I drove to work a few hours later that I really thought about it, I mean this stuff is not normal, but it is normal for us. Equally when I see Jack going into his bedroom with a pair of rubber washing up gloves and closing the door, I make a mental note not to disturb him, I mean no Mum wants to see *that*.

When Jack was a baby I had all these plans of how our lives would be ( see earlier blog post) never once in that plan did I envisage that I would ever say to my 18 year old son “stop waving your knob at the dog” or “get your finger out of your bum” or to Lucy ” stop licking the window” ( yep some people with learning disabilities actually do that , who knew?) or “stop licking that lamppost”. But I say these type of things almost daily , neither Ian or I bat an eyelid at it, in fact we actually say these things as a passing remark when we are on our way to deal with an equally ludicrous situation elsewhere in the house. We think nothing of looking on YouTube for a video of a mobile phone inside a washing machine or a dog opening Christmas presents ( I mean who the f**k actually posts this shit?) and will even interpret for visitors who don’t know Jack and Lucy speak what crazy stuff they want to find on the internet without finding it odd or even considering that they would be completely bemused by this sort of thing. This is our reality.

However it hasn’t always been this way , when Jack was a baby I stressed and worried over the slightest thing. I desperately tried to feed him organic food and encouraged him to try and fit pegs into holes , he had other ideas and would clamp his mouth shut like a vice at the organic puree and stick the wooden pegs up his nose instead of the carefully crafted holes. I’m perfectly aware now that this was ridiculous , but at the time I so desperately wanted him to be “normal” that I put him and myself through this stress. Eventually it dawned on me that this stuff was our “normal” , yes most people don’t sit up at 3am feeding their 3 year old chocolate custard because its the only thing he will eat , and he hasn’t eaten for 2 days. I got used to the judgemental looks and comments from the Stepford wives and the stories of how their breast fed , quinoa eating two year old could recite the alphabet backward, at that stage I was just happy that Jack hadn’t put anything up his nose that day or shoved a crayon up the cats arse. I was evolving.

I honestly believe that the majority of Carers didn’t start out the way that they are now, they weren’t always fierce warriors fighting for the best support for their loved one, or  an expert on the condition of the person that they care for, it has happened out of necessity , to survive in this difficult and confusing world of caring , they have evolved to survive.  I never know how the children will be when they wake up, I go to bed each night not knowing how many times during the night I will be woken up, each morning when we hear them stir Ian jokingly sings the theme from Jaws , as truly we don’t know what will be coming through our bedroom door .

However we get up each day and just get on with it, as I have said before – there is no plan B. And whatever life and SLOS throws at us ? we will adapt and evolve.

Dad

I’ve prevaricated for weeks over writing this blog post , I don’t want to upset or depress people, yet I feel I need to get it off my chest in order to move forward ( bit of local authority jargon there) . Not to worry my blog posts will be back to talking about poo and other ridiculous SLOS related things soon, but for now I need to write this.

As many of you know I lost my Dad quite unexpectedly on December 1st 2017 , it was a shock , it’s still a shock . It doesn’t feel real. I mean how can my Dad not be here? He’s always been there, dishing out advice ( well mainly lectures that began with ” now I’m not lecturing you” before a really long lecture) , or reminding me of the time I accidentally threw a £5 note in the bin back in 1990. But always, no matter what I did he had my back, he made excuses for me when I was being ridiculous and was my biggest supporter. I work in local government but to hear my Dad talk I was more important than the Primeminister. He was without a doubt the funniest person ever, he loved nothing more than holding court whilst regaling people with his hilarious stories about his younger days or his time spent in the RAF, people gravitated toward him as he was always so upbeat . He was kind, I mean really kind, always ready to help those in need , always on the side of the underdog. Him and my Mum had known each other since they were 6 years old, he was the boy next door, they grew up together and had been a couple for about 50 years. They eloped in 1971 just before my Dad joined the Air Force , I’m sure their lives were made complete when I arrived at the end of 72 ( I mean I’m a legend so of course that was the case) . My Dad had a dreadfully abusive childhood so he and my Mum made sure that my childhood was perfect , I never wanted for anything, always felt loved and secure. I have wonderful memories of fun times, walking along the beach and sitting on my Dads lap watching the light on the lighthouse. Brilliant Christmases . Both my parents scrimped and saved to ensure I never went without, that I got to university , that I could buy my first house, I didn’t buy my own car until I almost 30 .

My Dad was also one of the toughest people I knew , he wasn’t afraid of anything or anyone. No one was ever in any doubt as to what he was thinking , in 2016 some idiot tried to rob him at knifepoint which didn’t end well for him, my Dad battered the guy and took the knife off him ( the guy was in his early 20’s , my Dad was 66) , my Dad was mortified that the local press described him as a pensioner.

On Sunday October 29th my Dad was admitted to hospital as he had been unwell with what we thought was a chest infection. When I arrived at A+E and managed to fight my way through the drunk people I was told that my Dad did have a chest infection but also his kidneys weren’t working too well . I’m laughing now as before I arrived my Dad was being uncooperative ( he was confused and agitated) but when I walked into his room he said” oh shit now I’m in trouble” as he knew I was as tough as him and would tell him off for being silly. He spent a week in hospital receiving treatment and was soon well enough to come home. He was still very weak but in true John Collins style he fought very hard to get back on his feet. However 2 weeks later I arrived at their house to find him looking dreadfully unwell again , he and I argued because I wanted to call a Dr, in the end I just ignored him and did it anyway. Back to hospital he went. He seemed to be doing really well, although at that stage we thought that we were looking at long term dialysis which would be a bit of a nuisance but manageable. However this time he wasn’t bouncing back so quickly , he grew more thin and fragile, he stopped asking to come home. On Thursday 30th November I got a call at work, his Dr told me that he wasn’t doing as well as he had hoped , they were starting a new course of treatment but there was no plan B this time. I felt as though I had been kicked in the stomach. I rushed home to speak to my Mum and put her in the picture, we both cried a lot but reminded ourselves that he was as tough as old boots . The following morning December 1st I had a call from the hospital asking us to go straight over, which we did. My Dad looked awful but was still his usual chatty and bossy self, at 2pm a Dr asked to speak to me alone, there in a stock room ( everywhere else was full) they told me that there was no coming back from this and it could be months or weeks. I cried, the lovely nurse who had been looking after my Dad cried with me and the Dr hugged me. I pulled myself together and returned to my parents. My Dad looked at me and said ” don’t worry my darling, it’s not my time to go” I lied and said I knew that.

As the day went on he kept sending my Mum and myself away, telling us to go home as he was fine. Each time we left his bedside he deteriorated rapidly and the staff called us back , each time we reappeared he told us to go. The 4th and final time we reappeared he took his oxygen mask off and said ” now you two are taking the piss, go home” A straight talker to the end. I won’t go into the final details as it’s a family matter and my Dad was intensely private. But it felt to me that just like that he was gone. It had been one month since he was first ill, 7 hours since I was told he was very very ill. He was 67.

When I went to the chapel of rest to deliver some photographs to the undertaker he told me that my Dads coffin was in the next room , of course I had to go in to make sure it was ok, the coffin was sealed as per his request. I couldn’t help but think how tiny the coffin was, my Dad was 6ft tall. I sat there crying and wondering how all that love, that kindness, that wonderful personality could fit in that tiny box?

Telling Jack and Lucy was one of the hardest things I’ve ever done. My Dad idolised his grandchildren, we are a very close family and he was a huge part of all our lives , Jack broke my heart on Christmas Eve when he pleaded for Grandad to be allowed back just for Christmas.

My Dads funeral was exactly how he would have wanted it , a humanist service with music that he had chosen. We walked into Donovan ” catch the wind” as it was an important song for him and my Mum, we played ” keep on running” by Spencer Davies because when my cousin and I watched Top of the Pops in the ’80’s he would always joke with us that modern music was awful and where was Spencer Davies these days? At the end of the service we left to the song ” always look on the bright side of life” as he wanted everyone to go out smiling . Everyone that attended told us that the service ” was very John” . The wake afterwards was also very John, ironically he would have loved it, he would have been keeping everyone laughing with his funny stories.

For now we are trying to get through each day , sometimes it feels like I’ve a huge weight on my chest and I can barely breathe, other times I can be doing the most mundane task when the ugly crying starts. But mostly ….. well mostly I just miss him. So John Collins wherever you are now, here’s to you 💙

Who Cares?

Today I attended a conference where Professor Luke Clements was the key note speaker. Now Ian and I love this guy, he is the champion of social justice , he has been instrumental in the production of some key pieces of legislation for Carers. His talk today was inspirational, his passion shone through. He made a very good point about our society and the way that we as a society punish dependency, that we place a high value on self sufficiency and autonomy . Our society as a whole looks down their nose at people that need help and support.

Until I had Jack and Lucy I was probably the same, the world of health and social care was nothing to do with me , it was something that happened to other people. Then bam!! Overnight I became a Carer.

Now for most people a Carer is someone that is paid to deliver care to someone , the people that we see wearing a uniform , knocking on the door of our older neighbour. These people ( who do a great job and work bloody hard by the way) are not actually Carers, they are paid care support staff or paid care workers. The term Carer legally belongs to people like me , people that provide unpaid support to someone with an illness, disability, fragility etc who couldn’t manage without this support. Now we do this out of love, some people do it out of a sense of duty but mostly it is driven by love.

However that does not mean that it is easy. In fact caring for a loved one is bloody hard . On Monday for example Lucy was awake at 3.30am ( people with SLOS are notoriously poor sleepers which I may have mentioned a million times before) . Then there was the frantic rush to get everyone medicated, showered, dressed and ready for school . No mean feat when Lucy decided the shower was obviously made of Molten lava and the best way to deal with this was to flop about on her tummy like a seal escaping from a hunter on dry land, oh and I should mention she was shitting as she flopped about on the wet floor of our wet room. She bit my leg as I tried to wash her ( I should have mentioned that she reacted to the sponge as if it were wire wool) , then there was screaming, more flopping about and pinching as I wrestled her into a clean nappy and a dressing gown with a zip up the front as she has a tendency to flash at the neighbours. Meanwhile in our bedroom Jack was vomiting all over our bed because his anxiety is really bad at the moment, I coaxed him into the shower trying my best to distract him by singing silly songs while all the time panicking that he would end up sectioned again and making a mental note to phone his nurse, I dealt with the hundreds of questions about the future and things I can’t control as best I could while all the while keeping up my steady stream of reassuring platitudes, singing the silly songs and trying not to break down and sob because it’s just so f******g hard. Of course I never break down and cry because I’m a tough old bird who has this caring malarkey under control. I then arrived at work with a smile on my face because I don’t tell people how tough it is , and I am always genuinely happy to be at work.

I know that our situation is not unique, there are people fighting much tougher battles than us. There are people caring for a parent or partner living with dementia, there are people watching a loved one at end of life , all the way putting their own wants and needs to one side so they can continue to care.

Tomorrow is Carers rights day, of course it won’t get the recognition or high profile that something like Children in need did, there won’t be a telethon where celebrities tell us sad stories and urge us to donate money . Instead there will be people like me all over the world battling on . So tomorrow if even for a minute think of the 6 million people in the UK that care.

Its been a bumpy ride

Its has now been twelve weeks since Jack was sectioned, those twelve weeks seem to have flown and the circumstances surrounding his traumatic admission seem like a lifetime ago. Now I am not sure if it is because I have tried desperately to block it out or if it is because we have been working so hard to get back to some sort of normality.

I genuinely believed that the most difficult part of this whole episode was Jack being in hospital , and while that was absolutely horrific and brutal, his journey back to health has been really difficult too.

In the early days Jack cried  a lot as he struggled to process what had happened to him, he followed me literally everywhere and sought constant reassurance that I wouldn’t leave him . I took leave from work as we tried desperately to reassure him while all the while being terrified that he would end up back in hospital. The help that we were promised from mental health extended clinical service never materialised , so it was down to us once again to take charge and get Chan rehabilitated. Now I should point out that neither Ian or myself knew anything about mental health rehab but we do know Jack so I just started taking him back out into the community as we had always done and hoping for the best .

This is where the bumpy ride really starts. One of our first outings was to the GP surgery to collect a prescription, straight forward enough right? Yeah not so much as it turns out, we arrived and collected our prescription easily enough , however Jack decided that he wanted to stay at the surgery and assume the role of meeter and greeter, when I disagreed with his new career choice and tried to get him to leave he took a dive that Christiano Ronaldo would have been proud of . He lay in front of the reception desk ( all 6ft of him) screaming bloody murder. Now I am pretty sure that there is an approved technique for dealing with this type of situation, but I don’t know this technique so I tried a tried and tested Port Talbot technique and said ” get up you bloody tit”, I’m fairly certain this is not a recommended technique as theorised by E Emerson et al but it worked for us. On another of our outings Jack was feeling  unsettled and vulnerable in Aldi so he grabbed a little old lady whilst crying hysterically, as I tried desperately to extrapolate him the old doll started to panic that he was trying to steal her purse , FML.

We decided to try Swansea for a shopping trip , we went into a designer shop as Jack wanted underwear. When they were not immediately apparent Jack physically grabbed a man that worked there and demanded to know “where are your pants?” Again I should point out that Jack is big and loud so I am pretty certain that the guy crapped his pants whilst I desperately tried to explain. On to the next shop, Debenhams the department store to buy make up , all going well until Jack turned around to speak to the lady standing behind us in the queue. Now unfortunately the lady had gone a little overboard with the old make up and her eye brows looked like they had been drawn on with a bingo dabber, Jack said ” hi (pause) oh I am sorry about your face love”, it was difficult to tell if she blushed but I most certainly did.

The following day we went out to a supermarket to print some photographs and do some shopping , pretty safe right? Well on that day the printers weren’t working and Jack lost his shit , started crying and shouting and ultimately headbutting the screens. We attracted  a lot of attention whilst the security guard quickly made his way over to us, we made a quick exit. However our outings started to become less fraught as Jack adjusted to his new reality, his new meds slowly started to work and things became a little easier. The outbursts are far less frequent now, well apart from this week when Jack took a fancy a nasty faux fur coat in a shop , I said he couldn’t have it and he started grabbing the coat whilst shouting ” I am f*****g having it” while I walked away and pretended I wasn’t with him , oh and on Wednesday he decreed that he was going to sleep the night in Tesco because I wouldn’t buy him full fat Pepsi.

Through this bumpy ride I have felt like giving up many times, it just seemed too difficult and so incredibly overwhelming . However where my babies are concerned that is never ever an option . The hard work is now paying off as Jack is so much better , he is laughing and smiling again. I mean things are never going to be “normal” but normal is boring anyway.

Labels

I have noticed recently that we as a society are obsessed with labels, everything and everyone has a label. I think that people are comfortable if they can label someone and fit them neatly into a box . If you look at the picture of Jack, Ian and Lucy most people are happy to label them, so they see Jack as a young man who has SLOS, Autism, a learning disability, bi polar disorder . Ian as a wheelchair user, and Lucy as a young lady who also has SLOS, a learning disability, ADHD and a propensity to bite. Yet they are so much more than these labels . Jack is a handsome, charming, funny, witty young guy who loves fashion, has participated in a fashion shoot , likes music and sings in a choir. Ian is my husband, best friend, the person who keeps me sane ( ok so maybe he’s not great at that part) , a former nurse practitioner, a retired project manager, a former Aikido instructor and keen scuba diver. And Lucy, well she is the cutest person I know ( yes i know she’s a bit bitey) , she loves heavy metal music especially Alice Cooper, Ozzy Osbourne and Disturbed, she loves animals but not cute fluffy animals! Oh no our Luce loves tigers, grizzly bears , wolves and well basically anything that will kill you in a savage attack . Anyway my point is that labelling people isn’t always terribly helpful. As many of you know I am very much an activist for Carers rights and recognition , in 2004 I travelled to the House of Commons and spoke about how it felt to be a Carer. How so many Carers sacrifice big parts of their lives to look after someone that they love and how we deserved better rights. I cried when I was present at the House of Lords when the Carers Equal Opportunities Bill became an Act, it became law. However I am starting to feel that people are starting to see themselves as labels and not individuals and losing their identity because of it. I find that particularly in health and social care we are obsessed with labelling people , the professionals are labelled and defined by their job role, patients are labelled by their diagnosis or the difficulties that they have and then the families are labelled as Carers. At times it feels as though with these labels battle lines are drawn. I hear people say ” no one cares about that Carer” or ” social services won’t help” . Now as a person with a foot in each camp I really do understand these feelings and frustrations. I feel frustrated when I’m struggling to get the support that Jack and Lucy need, but equally I feel frustrated that at work we are not always able to give families the help that they want. I can’t tell you how many sleepless nights I’ve had and will probably continue to have both as a Carer and a professional working in Social Care. Ian is always telling me I can’t change the world, but I would like to think that by reducing the amount of labels we use it might be a start. I mean I didn’t get my label of being a force of nature by just sitting on the sofa 😉

Acceptance

Earlier this week one of the other wonderful SLOS Mums that I know posted that her beautiful 4 year old son had been invited to a party , we all shared in her excitement and I will admit to having a huge lump in my throat when I looked at the photograph of her gorgeous smiling son . Now you’re probably wondering why a child being invited to a birthday party is such a huge deal, so let me try to explain. For most people with children the endless rounds of birthday parties are a living nightmare. You have to spend a fortune on a gift, transport your offspring to a hall, fast food place, swimming pool etc where they bounce off the walls and you are forced to make small talk with people that you see at the school gate and probably have secret nicknames for ( like always in her jamas woman) , the kids then return home all hopped up on sugar , sometimes there are two parties in one day and you wonder how you’re going to get through it all. But when you have a child with a disability they don’t tend to get invited to parties , unless of course it’s to the party of another child with a disability. People don’t generally want a child there who is petrified of balloons or who may get over excited and do something socially unacceptable. Similarly as the parent of said child it’s quite uncomfortable to try and make small talk with the other parents you vaguely know whilst your child is sticking a cocktail sausage up their bum. However when your child is invited to a party with mainstream kids you feel a sense of elation that your special child is being accepted.

Most people really want to be accepted by their peer group and by society , I am so relieved that I have reached the stage that I no longer give 2 hoots what people think of me ( not that I did much anyway) and our kids are no different .

When you are the parent of a child or children with a disability you learn to accept your new way of life gradually ( see earlier blog post on this) but you also learn to accept your children and the many weird and wonderful things that they do and say . For example Jack and Lucy sniff people , they lick people and objects ( the biggest lie I’ve told my kids is that people don’t like being licked) . Earlier this week Jack and I were walking behind one of our neighbours, the lady in question seemed to be having some sort of issue with her underwear and or bottom as she was having a good old rummage as we walked behind her, Jack of course found this hilarious and I had to work really hard to stop him shouting after her. Anyway she stopped and sat on a bench so we had no option but to walks past, I held me breath as we got to the bench, Jack immediately said ” Hi ( ladies name) why were you picking your arse? ” . He once shouted after the same neighbour to ask where she was going , she replied that she was going to the dentist . I should add that she only has one tooth at the front, like one big pickle stabber. Jack looked at her mouth and said ” why?”

Last week Lucy was laying on the floor in Tesco talking to Ozzy Osbourne as people stepped around her . Both kids break wind loudly in public and belch like you wouldn’t believe. They always say pardon me but still we have had some odd looks. On one occasion lucy and I were sitting a rather posh tea shop, lucy piped up with ” mam I farted” so I said ” and what do you say?” To which Lucy replied ” it’s smelling” . We learned to accept these things many years ago but I understand for other people it can be a tad disconcerting.

We are so very lucky that we have close family that accept and adore Jack and Lucy, they also have family members who haven’t seen them in years and never ask after them or even send a birthday card , they have no idea what they are missing. We have wonderful friends who choose to spend hours here enjoying the chaos and laughing along with us. We live in a great community where almost everyone knows Jack and Lucy, I never worry when we are in Port Talbot as almost everyone is amazing with the kids. They are accepted and I truly know how lucky we are.