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.


Things can only get better

Remember that song from the 90's "Things can only get better"? Yes I know its a cheesy song but it has become my mantra recently. Let me attempt to explain why……….

As many of you know Jack has struggled with ill mental health for many years, horrendous outbursts and self harm have become a way of life for us for the past six years, and like everything else we have just dealt with it. When you have a child with complex needs there is no plan B, this is your life and to an extent you just get on with it. Of course there is support out there and we are very lucky to have an excellent social worker for Jack, a brilliant school, a school nurse that we all love , fabulous support workers , a really understanding employer and of course our trusted family and friends who are there no matter what. But for the past year things have been bloody hard.

Jack and Lucy have a truly wonderful paediatric psychiatrist who has always been at the end of a phone, she has laughed with us and cried with us. However as Jack was growing up she was limited by clinical governance as to what she could prescribe for Jacks increasingly deteriorating mental health. We waited in anticipation for Jacks 18th birthday when he would transition to adult psychiatry and the medicine that could make a difference. The magical first appointment day arrived, unfortunately I had undergone abdominal surgery and despite my best intentions I was unable to attend, so Ian and our good friend Billy took Jack along, they were told that Jack would be observed over a period of time before any changes were made. I was really disappointed and called the new psychiatrist myself, another appointment was made and Jack was seen again. At this appointment he screamed and shouted and used words that would make a sailor blush, and so began the slow process to change his medication.

Nothing really changed, if anything his behaviour and moods got worse. We were back and forth to appointments for the next five months and all the while we watched our beautiful and precious son become a person that we didn't know. He screamed for hours, he threw heavy furniture around like they were made of matchsticks, he developed an almost super human strength, he screamed for hours, he called us the most unimaginable names, I think he actually invented a few new swear words, and the worst part – he hurt himself. He really hurt himself, blood poured out of his mouth as he repeatedly punched himself in the face, he bit huge chunks out of his arms ( you could literally hear the skin tear) his clothes were often covered in blood. And when this stopped he sobbed for hours. All the while we just kept on going with little sleep, it was relentless.

July 3rd began just like any other day, Jack screamed the place down like he had done recently whilst he was getting ready for school. I went to work as usual but had a horrible sense of foreboding ( call it mothers intuition), at lunchtime Ian called me and told me that I needed to come home as Jack was very unwell and the psychiatrist was on his way to the house. I came home and found an incredibly distressed Jack, within 20 minutes the learning disability nurse arrived shortly followed by the psychiatrist. We were told that Jack needed to be admitted to a psychiatric facility 35 miles away from our home. Ian hastily packed a bag and we travelled to our destination. I really don't remember much about our journey except that Jack was eating crisps, the first thing he had eaten in 24 hours.

We arrived at our destination and were shown in. Ian and I were bundled into an office by a taciturn nurse who didn't introduce themselves, offer us a coffee or tell us anything about the facility. We sat down and he started to take a medical history, I dutifully answered the questions and then became aware that everyone was staring at me whilst a young student nurse proffered a box of NHS tissues. I was crying and I hadn't even realised, I looked down at my top to see that it was soaked with tears – I mean how do you cry that much without noticing? Jack appeared at the window to the office and asked me why I was crying and what was wrong. Of course that made me start to sob, it got worse when the nurse got up and closed the blinds so that we could no longer see Jack. Very quickly the paperwork was completed and we were bundled out of the ward.

I will never as long as I live forget the sound of my baby screaming for me as the ward door was locked behind us. Ever!

I don't remember the journey home. I am told that I vomited in the car park and howled like a wounded animal all the way.

We got home and tried to act like nothing was wrong in front of Lucy, Ian did a much better job than I did. Then came the phonecall to tell us that Jack had tried to leave the ward and had now been sectioned. Neither of us ate or slept that night , we drank endless coffee and chain smoked. The following day we went up as soon as Lucy had gone to school , we found Jack laying on the floor, his hair was a mess and he hadn't been shaved, he was silent apart from asking to come home, his jaw swung wildly like a person who was on a comedown from drugs. The television set droned away in the corner and some clown had decided that playing "Bridge over troubled water" was a good idea. Once again that pesky sobbing started. A well intentioned member of staff said " don't worry love, soon he will settle and not want to go home" and that was precisely the kick up arse that I needed. Crying was helping precisely no one.

When we got home I rang every contact that I had, I sought advice and Ian did the same.

I must state at this point that the outpouring of love and support that we were receiving was simply overwhelming, we couldn't keep up with the 500 odd messages that we had received via social media, the calls, the cards, the flowers, wine and gifts for Jack and Lucy and the various offers of practical and emotional help. The people at my work were also amazing, lots of texts, offers of help and assurances that I need not worry about work and to concentrate on my family.

However our mission was to get Jack to a place where he could come home. The ward was OK but very much like an institution, rigid times set for everything, no stimulation, I heard phrases like "toileting" that I thought had gone out with the Ark, two of the nurses were lovely but the rest were not at all keen on us being there and asking questions. They wouldn't let us see Jacks room until I asked them what they were hiding and mentioned Winterbourne , in a way I wished I hadn't seen it as it was like a prison cell. Jack tried to open the wardrobe to show me where his clothes were and the door was locked, in fact everything there was locked. The first day I sobbed all the way home, the second as far as Bridgend, until after a week I could manage the whole 35 miles without crying at all.

As the week progressed we kept asking questions such as why Jack wasn't allowed a drink because lunch was in 20 minutes ( his top lip was stuck to his teeth he was so thirsty) , we challenged and we fought. Until finally we had a multi disciplinary meeting, Jacks amazing social worker had returned from annual leave early to be there for our family, the wonderful school nurse was there when she really didn't have to be ( I did nearly lose my composure when she produced multiple copies of Jack happy and smiling at the school Christmas party and said "this is the Jack we know and love, lets get him back to that") the two lovely nurses from the learning disability team were also there along with the manger of the mental health team who we had never met until that day. But they all played a blinder. They reinforced the support they could offer Jack and talked about what a loving and supportive family Jack has, I should mention that Lucy didn't notice that Jack was gone for 48 hours. A plan was put in place and for the fist time in nearly a week I felt better.

Jack continued to improve but so desperately wanted to come home, we wanted him home. Then 7 days into his 28 day section we were told the section was being lifted and Jack could be discharged the following day. My wonderful family worked really hard to finish decorating Jacks bedroom ( he had trashed it when he was very unwell) in time for him to come home. I drove up early the following morning and when Jack asked if he could come home it was the best feeling in the world to be telling him yes. We both hugged and cried. We quickly gathered his belongings and I drove us home.

Our baby was finally home.

Things haven't been easy since his discharge from hospital, his medication is still being adjusted, he is incredibly clingy and follows me everywhere, he wont go out unless its with someone he trust implicitly as he is scared he wont be able to come home again.

But we will get there, as D:Ream once said "things can only get better" and I have to believe that.

Moving on 

When you become a parent you prepare yourself to raise your children until they reach adulthood and then set them off on their journey into the big wide world. You mentally prepare yourself and dream of the day you pack them into the car with their belongings and drop them off at the university campus of their choice, you will worry that they will drink too much and not attend lectures, hope they won’t live on pot noodles and remember to ring home occasionally. But when you have a child or children with a disability the goal posts change dramatically. You hope that at 18 your child has mastered toilet training or not shouting at their coffee in Costa because it’s too hot ( while we are on that subject, I apologise to the man who witnessed Jack screaming ” ha ha f**k you , you burning bast**d ” at his coffee 2 weeks ago) Anyway I digress. I’ve been Jacks Mam for 18 years, it’s been a rollercoaster, it’s been bloody hard, it’s been fun , it’s also been completely exhausting . Jack is a complete sweetheart , he makes me proud everyday, he can also be a complete arsehole because he’s a teenager! He and Lucy argue a lot, you parents out there with more than one child will understand what I mean . It’s like sibling rivalary on steroids , he pokes her and she throws a Furby at him, he screams and I dive like a ninja in between them often getting hit, pinched or bitten in the process. Then there’s all the personal care to deal with, the medication etc , the list is endless. 

Anyway, when Jack turned 18 I started to seriously think about the future , how long could I keep doing this for? Many of my friends had asked me about taking a break and I always gave a glib response about having one night off a month which was fine. But secretly I yearned for a break. I last went on holiday on August 25th 1996 , I’ve sat with friends as they discussed holiday plans and pretended that I didn’t miss holidays , I even did some press around this subject two years ago for a Carers charity. It’s also a bit of a joke among my colleagues that I never go away. One of my dreams is to attend the SLOS conference in America in two weeks,the chance to meet friends who are like family and hear the latest research,  we have tried desperately to make it a reality but sadly it isn’t going to happen this year. As part of Jacks transition to adult services he was allocated a new social worker, we have been incredibly lucky that the new social worker is great , they have taken the time to get to know Jack and us as a family , to help us figure out what is important for our wellbeing and to explore ways that we could continue supporting Jack and have a life outside of caring. But I will admit when they first mentioned respite for Jack away from home I was ever so slightly mortified. I’m his Mother , I look after him and Lucy , it’s what I do. How would he cope without me? How would I cope without him? What would people think of me? Would they say I couldn’t cope ? I should add here that I have worked for and with Carers for 13 years, I plan services, write policies  and arrange services for people just like me that will allow them to have a life outside of caring . I advocate that it is extremely important to look after their own wellbeing, but do I take my own advice? Do I hell. 

After lots of discussion with Jacks social worker where I am sure they must have thought I was a little crazy with my million and one questions and outpouring of emotion we arranged to arrange a local respite facility. I of course had decided that I hated it before we arrived. The day of the visit I snapped at poor Ian all the way there, I had a vision of a dreadful place ( even though I really knew better) but I was pleasantly surprised. This place was amazing, the manager was a warm and friendly person, the staff had a great attitude , the facility was amazing . I left feeling much lighter and positive. Soon tea visits began, this wasn’t plain sailing as in his second visit Jack decided that I was leaving him at an internment camp or something and screamed the place down, I sobbed all the way home and stressed for the two hours that he was there. I needn’t have worried as when I went back Jack had charmed everyone and was reluctant to leave. After a few more tea visits it was time for him to stay the night. 

Now , we were committed to this new stage in our lives, I was confident that Jack would have fun and be well looked after.. so , why was I gulping down the lump in my throat as I purchased new toiletries for him to go? Why did I literally sob as I washed the new red towel and pyjamas that he would take with him? And on the morning that he left why did I fall into Ian’s arms crying until I thought I would never stop? 

He had only been there 30 minutes and I wanted to ring them to see how he was. I managed to last three hours before I dived on the phone. To my relief he was doing great! The staff loved him ( how could they not right?) and he was having fun. I felt guilty as I realised that bed time was a little easier with just Lucy to settle, Ian and I were sitting down at 7:30 pm, we had a conversation, we laughed, we were in bed and asleep by 9:30pm

When I rang the respite centre at 7am staff reported that he had been great, he had slept well ( which he doesn’t do at home) and was happy and calm , he went to school with a big smile on his face. Ian and I had a relaxing day at home until it was time for the kids to come home from school . They came home happy. Jack had taken the whole thing in his stride. Somewhat rested, I was ready to take over the reins again . We had all survived and actually benefitted from the experience. 

I still feel a little guilty,  but I keep reminding myself that you can’t pour from an empty cup . Spending a night away from home was fun for Jack , I mean when I was 18 I often stayed out and ….. well my mother reads this blog so I won’t say anymore. He needs some more independence and we need a break. So he’s booked in again for two weeks time. 😉

And then they came for me…

Unless you’ve been living under a rock recently then you will know that we are facing a general election on June 8th 2017. This fills me with hope and terrifies me in equal measure. I am hopeful that things will change yet terrified that they won’t or that things will get worse. 

Before having Jack and Lucy I didn’t really care much for politics, I always voted but gave little thought before putting my cross in a box. In my ignorance I believed that the people that needed the most help would get it, I mean we don’t live in a third world country right? So when we needed to find support for Jack when he was around 3 I fully expected to be able to access it easily, we collected the forms to claim a disability benefit for him and when we opened them I nearly cried. You need a PhD to complete these forms, you have to provide huge amounts of evidence to prove that your child can not walk , can not eat, sleep etc. You simply can not say that they can’t do this stuff, oh no ! You have to collect evidence from every single professional involved in their care ( no simple task when you have a complex disability) and send it away along with the very lengthy form. Then you wait for someone who has never met your child and knows nothing about their syndrome to make a decision on whether they are entitled to financial support . When Jack was awarded Disability Living Allowance we were ecstatic , yes that’s right, we were ecstatic that someone we had never met had believed us when we were telling the truth. I thought in my naievity that was the end of that, but it wasn’t sadly, we had to go through the same thing every few years . Fast forward 15 years and Jack at 18 had to go through claiming Personal Independence Payment (PIP) a very helpful person at the DWP suggested he may grow out of his syndrome . Then there is the further indignity of being called to a face to face assessment where a total stranger with a medical qualification totally unrelated to your disability will make you perform a variety of tasks to try and prove that you don’t have a disability and or are not ill. If by some chance they believe that you are telling the truth they will allow you your benefits , but can review you at anytime and make you go endure the whole hideous process again. 

Under our current government people like Jack and Lucy have really struggled, we also face Brexit a decision made by most voters based on xenophobia , ironically the very people that voted to leave Europe will be among the hardest hit when European funding is withdrawn. 

People that know me in real life often joke about my left wing views, I have been accused of having views left of Trotsky but I own that. Having lived with Jack for 18 years and fought countless battles for him and Lucy I have seen first hand what government cuts look like. I have worked for and with Carers for 13 years, I have watched people crumble under the pressure of caring for someone that they love. Yes I am acutely aware of what suffering looks like . I also know that our country is not in great shape, but taking vital support from  the most vulnerable members of society is not going to help. In fact as people are further oppressed and can no longer cope then it places a further burden on an already strained economy. 

So before June 8th read, research and educate yourselves. The proposed cuts may not apply to you or someone you love right now , but none of us know what is around the corner. 

Of course 🙄

I find myself saying ” of course” about 100 times a day. It’s always followed by – he did, she did, they are or other variations on the same theme. It’s either said or thought in a sarcastic or resigned tone and followed by an eye roll. 

Jack and Lucy say and do ridiculous things on a daily basis, I now expect it and not a great deal surprises me anymore. For example today alone we have had ” maaaam Jack is peeing in the shower again” I should clarify that he wasn’t actually taking a shower at the time, he was just peeing into the shower. And ” maaam lucy is eating her snot again” I suppose it makes a change from her trying to eat Jacks hair wax. 

Last year the kids were in bed when there was an almighty banging sound resonating throughout the house, we immediately jumped up and started bleeding radiators and checking pipes. The noise continued, I was looking up the number for the plumber when Ian shouted down the stairs ” it’s ok, it’s just Lucy kicking the crap out of her radiator” , my first thought ” of course it is” . On the subject of plumbers , we did actually call one last year as our downstairs loo was broken, he dismantled it and then called us to say that he had found a whole toilet roll, a hearing aid and a collection of toys down there. We weren’t even surprised.  On another occasion a washing machine repair man came to find out why one ( yes we have more than one) of our washing machines was flooding the utility room, he called Ian and said ” I’m a bit confused mate, it looks as though someone has bitten a chunk out of the rubber seal” – of course they had. 

And who can forget the time I called Ian to tell him that Jack and picked a huge hole in his duvet and was wearing it like a poncho. 

Or the time that Ian called me to tell me that whilst he was bending over to wash Jacks feet in the shower Jack had shoved his knob in his ear ( Ian’s ear, not his own because that would be weird 🙄) 

Or last Christmas when I was changing Lucy’s nappy and was a tad mystified to find tinsel, I asked her what she had been eating, her response of ” the Christmas tree” just made me roll my eyes and think the usual response. I mean who doesn’t like a festive themed shite? 

Jack has hypermobility , on one occasion Ian told me that Jack was upstairs with his knees either side of his head and was looking up his bum hole. Of course he was. 

Today has been a particularly tough day, the kids have waged war on each other every single time they are in the same room. Ian is nursing a new collection of bites and I have a really sore back and a swollen thumb from Lucy wrangling. We are both exhausted and I’ve had a few moments today when I’ve thought to myself ” I can’t do this anymore” . Lucy is now in bed and Jack is much calmer without his arch nemesis to irritate him, I’ve had a glass of wine and am listening to old music as a way to relax, Ian just returned from the shop and asked ” Kath, I just heard you singing Hey Jude on the top of your voice from outside” my reply? ” of course you did” 🙄

WTF is the matter with people?? 

If you know me in real life then you will know that I am a really open minded and tolerant person. I’m a live and let live type of person. I won’t judge you on your job, ethnicity, sexuality etc , but I will judge you on whether you are an arsehole or not. 

Today Jack and I were in town, we were having a great time. In every shop the staff knew Jack and were really happy to see him, we made new friends too which always happens. Jack is the friendliest person that you are likely to meet , he talks to everyone, he compliments people and dishes out hugs with gay abandon. People always tell us that he brightens their day . We had just finished having coffee with our friend Nigel and were on our way home when a woman pushed past Jack and made him lose his balance , she was trying to push to the front of the queue in a bakery. Jack immediately apologised even though it wasn’t his fault and the nasty old trout started shouting at him. Now I’ve been Jacks Mum for 18 years so am sadly used to some people’s ignorance and will always try to calmly explain that Jack has a disability, but today I totally lost it. I wiped the floor with her, I threatened to do all sorts to her before she walked away looking sheepish. I was still upset when I got home , and as soon as Jack went out with his support worker I burst into tears. 

I mean WTF is wrong with people? 

I get that some people are a little wary of Jack – I mean the guy is huge and very loud, however just a quick conversation with him will tell you that he really is a gentle giant ( his sister Lucy on the other hand looks angelic but will f**k you up , make no mistake) but surely there is no need to be unpleasant? 

We get lots of funny looks from people when we are out and about, I mean it’s not everyday you see a family having a drink in Costa with fox the wolf or a fat bird carrying a Christmas cow into the hairdressers, for the most part we are oblivious to the staring as it happens so frequently, which I guess is really sad. Why do people feel the need to stare? Mind your own business and go about your day. We were at a museum once and Ian told one family that the exhibits were over there and pointed in the opposite direction to our little family. 

It’s not difficult people, if you see something that you don’t understand then educate yourselves, ignore it, accept it or f**k off. But whatever you do , don’t stare or make ill conceived remarks. If you see us in Port Talbot then come and say hello, we don’t bite. Well Lucy does a bit …… 

What happened? 

I think it was John Lennon that said ” life is what happens while you’re busy making other plans” and this morning I finally understand that quote. I mean I always understood what he meant as an intellectual exercise but until today I didn’t really feel that it applied to me. 

To put it into context, I moved a box of old photographs ( I can do that now after that stupid hernia repair) and an old photograph fell out. The photograph is of me aged 21, I was at university and ready for yet another night out, I’m relaxed , happy and smiling . I didn’t have a care in the world. Jack immediately recognised me but followed it with ” what happened ?” I just laughed and said ” life mate” . But as I was showering Jack I did think to myself , yeah what happened? 

When I look in the mirror I don’t recognise the old trout looking back at me, last week I accidentally looked in the magnifying side of the mirror and almost screamed. I mean I know I’m getting on a bit but I had quite the surprise when I clocked the ” laughter lines” around my eyes, I mean surely nothing is that fecking funny? 

I thought back to my younger self. Kathy Collins was what my dear Nan would describe as a hell of a girl, there is nothing that I wouldn’t drink/ smoke/ try, these days my idea of risk taking is sneezing without clenching my pelvic floor. Gone are the days when I would be on my way to a job interview, bump into my mate Kev, end up in the pub and turn up to the interview as pissed as a fart ( obviously I didn’t get the job) these days I’m a responsible adult. 

Having Jack and Lucy made me grow up pretty damn quick. I know that parenthood makes the majority of us grow up quickly but when you have a child with a disability I think you reach a level of maturity that you didn’t think possible. Don’t get me wrong I still laugh at childish things but for the most part I’m quite sensible these days. I have two children who depend on me for literally everything, they are in no way and never will be independent. But that’s ok. 

My days are spent cleaning people up, feeding people, negotiating with people who make impossible demands ( I would be a great hostage negotiator I think) measuring out and administering medication , dressing and undressing people and carting the Christmas cow and fox the wolf everywhere we go. 

Before I had children I decreed that my children would not control my life, would only eat organic food and never have a tantrum in public. Let’s all take a minute to laugh about that 🙄

Sometimes I feel that in the middle of this heavy caring responsibility that I have lost myself. I mean I am a parent carer, a wife, a daughter, an employee, a friend, a cousin ( I’m an only child) and somewhere in the middle of that I am an individual. I always feel guilty that I don’t give enough time to people. I am constantly exhausted . 

Having kids like mine is not always the best for your self esteem. Jack is always telling me my hair needs dying, he touches my face and tells me I have a beard like santa, recently he pulled up my top in Tesco and started singing ” jelly belly” of course my hands were full so I couldn’t really do anything. Lucy is forever shaking my belly and shouting ” wobble wobble ” . But then they tell me they love me and I’m the best mother in the world and I immediately forget the rest. 

As I sit here typing this whilst wearing my reading glasses ( because I’ve reached the age that I need them) listening to Lucy being a growling bear and thinking of all the funny things the kids say and do I realise that Kathy Collins is still in there somewhere , I mean the kids have got their eccentricity from somewhere right? 

Holidays SLOS style

It’s Easter Sunday today. For most families holidays like Easter and Christmas are an opportunity to relax with family and friends, to enjoy a delicious meal and celebrate whatever traditions they associate with that particular holiday. 

For us holidays are met with a degree of trepidation. We never really know how Jack and Lucy will react on the day , with that in mind we don’t really make too many plans and just try to go with the flow. 

We have had some truly bizarre holiday celebrations. There was the year that Jack was terrified of his presents on Christmas morning and wouldn’t open a single one , he screamed and sobbed whilst hiding behind his Grandad. For a few years we had to provide all and any gifts in a bag that he could easily see into. Thank goodness that passed. Now Jack and Lucy have reached a stage where they absolutely love Christmas, they love the build up and the anticipation but sometimes the day itself is simply too much . A few years ago half way through opening his presents Jack actually went into shock, like proper shock. Luckily Ian is a nurse  so was able to help him quickly. 

Jack and Lucy have never eaten a traditional Christmas lunch, but one year Jack had a guitar off Santa, now I should clarify that Jack doesn’t know how to play the guitar but he is incredibly enthusiastic , so whilst the whole family including grandparents sat chatting and eating ,Jack walked around the table strumming the life out of his guitar whilst singing ” hound dog” in one tone – it truly was like being serenaded by Satan or being subjected to the entertainment in a questionable restaurant . We all ate our lunch shouting over the racket and ducking as Jack swung his guitar manically . He was wearing a white Elvis style jumpsuit all the while. As Jack was torturing us with his music , Lucy decided it would be a great idea to sit at the table and place metal cars inside her toy washing machine. I noticed that Proudfoot senior discreetly turned off his hearing aid at this point. Well he is almost 90 and doesn’t need that at his time of life. 

For the last 18 years Jack has wanted an Easter egg but has always point blank refused to even consider eating it. Lots of people with SLOS really struggle to eat and Jack is right up there with the best of the food refusers. But today he asked me to open an Easter egg and scoffed the lot!! Of course I cried and sent the video to everyone I knew. 

The rest of our day was probably a little different to other people’s. There was no fancy family lunch because the kids get a bit overwhelmed and we haven’t had time to cook one. Lucy decreed that she would not be leaving the house today and Jack really wanted to go to Porthcawl fair. So Jack and I went to Porthcawl to ride on the crappy ghost train ( he keeps his eyes shut all the way around and I have to cover his ears) and then spent ages watching his favourite ride whilst shouting ” pay at the pay box if you would like to ride” ( damn you echolalia) while people stared at him. Lucy has eaten her body weight in Chocolate today so her nappies will be a delight tomorrow. 

However once they go to bed Ian and I will enjoy a bottle of bubbly and some Gammon that we chucked in the slow cooker this morning. Yes it isn’t a traditional Easter Sunday but there is nothing traditional about us. Oh and Jack ate an Easter egg – did I mention that? Happy Easter folks ​

Taboo 🤐

There are certain things that we never ever discuss in civilised society, there are certain topics that are not deemed acceptable in polite company and most certainly not for discussion at the dinner table. There are things that Ian and I discuss everyday without batting an eyelid that would make most people quite unwell, and we only feel safe to discuss them with certain friends that work in health and social care , certain family members and of course parents of children with disabilities. 

For us no subject is taboo. 

I felt compelled to write this post as for the past 35 minutes I have been removing lumps of poo from pubic hair ( not mine I hasten to add) with the aid of olive oil and cotton wool ( thank you to a fellow SLOS mum for that great advice) in the end I had to resort to my trusty scissors, which of course prompted a huge meltdown, threats of violence and inevitably getting bitten. But it’s all sorted now, clean nappy and happily in bed.  The  whole cycle will begin again tomorrow. 

When you become a parent you accept that changing dirty nappies and providing high levels of care, you expect that this will last for a few years until your child acquires a degree of independence . However when you are a parent of a child with a disability this continues for many many years and sometimes for the rest of your life. But no one outside of our world ever talks about it. 

Jack is always getting compliments on how smart he is, and he is. He is always perfectly groomed. To achieve this look takes a lot of hard work , the morning routine is taking off last nights nappy , showering him, shaving him ( not easy as he literally doesn’t stop talking) , cleaning his teeth, drying him, putting on his deodorant , dressing him, styling his hair and applying aftershave, putting on his shoes and socks and he is cat walk ready.  Then I start with Lucy, she however is not co operative and is terrified of the shower, so it has to be done quickly whilst she screams bloody murder. If you don’t watch her she flops out of the shower on to her tummy and bounces across the bathroom floor much like a sea lion on dry land. Of course the Christmas sodding cow is also in the bathroom whilst we participate in this pantomime. After fighting her into her clothes , which I imagine is how it feels to wrestle a greased octopus with a prepencity for biting , finally  I can then shower and get ready for work. 

I can’t even begin to talk about shaving Lucy’s underarms. 

As my children were growing up I was under the misguided apprehension that the level of personal care required would reduce. This makes me laugh now. I have been changing nappies for 18 years, clearing up poop and getting dribbled on. It’s a way of life now. It just takes a lot more baby wipes to clean up a teenager. 

Tonight Jack was on the changing table getting ready for bed and he was tired and irritable, he hit himself in the face and I think in the morning he will have a thick lip, I think Ian may have one too as he received a kick in the face for his trouble. 

I’m going to stop rambling now and drink some wine as in the morning it will be back to nappies and winets. Cheers