MAKE SURE TO LEAVE YOUR IMPRINT WHERE EVER YOU GO< BE YOU> never give up!!
I still have every letter I ever wrote my hubby from the day after we first met, everyday I would write another one for him, they kind of fizzled out once we married and ended up being a slightly longer birthday or special occasion message, I have to ask people to tell me if I am annoying. this is my I can’t be any other way I am a pretty expressive person thier all in a memory book with all the important moments of our dating and married life. I think I had two from him which I still have one I always carry with me. If I talk to people I really want to get to know them though,
The week with Hayley here went very well, we have been doing our you tube videos just more of a one on one conversation it really has helped with my nerves a lot but not as entertaining as the dance videos they are upbeat and high energy, just a shame they cant be on there.
I will pop links up in a moment, I have done something to my leg pulled a muscle in the thigh or something which is a pain hopefully the pain will go quick. I got my letter through to take with me for vaccine so will try and book a slot after Hayley’s zoom tomorrow.
Niko is setting up Hayley’s laptop ready for me to take to her house for her zooms next week, she has a morning one tomorrow 9.30 going to teach dad how to do them on laptop when I am not on duty saves me going over there on my time off if he can do it.
Any way just short one tonight having trouble focusing , have a beautiful evening.
Much love Faye xx
Share's welcome, new authors can do with a little help to get thier work out there
Hi what an amazing few days it has been for us, I am on a path to teach my kids what is achievable if they persevere and keep trying, to push the boundaries of there set routines and set out a new path of discovering just what they are capable of if they believe in themselves and have faith in where life is taking them. I am big on not hindering their growth while at the same time supporting their needs. I want to continue teaching them life skills while they are focusing on their education getting an Keeping a job when you do have complex needs is challenging I know this through my work with Hayley but having an education and the academics for them i hope will vastly improve their chances of eventually working and living a fully independent life. This is becoming more of an important topic to our family due to Niki transitioning to adulthood share is 21 in march. Jake will be 16 in February so milestone birthdays.
But Niki her biggest issue at the moment and I think it maybe an issue for many with EHCP’S that are staying on in further education is the Financial support which is through the universal Credit. Not classed as a child any longer once they reach 20 and not classed as an adult in their own right either that year black hole where the system is failing them. as You know we applied for it for Niki back in March just before that date of her 20th birthday because before we were entitled to claim child tax credit for her we wanted to apply then to make it a smooth transition we never realized how difficult and stressful and complex that would actually be.
What the system actually puts people through needs a big overhaul. I will share what the issues were just so that if anyone reading is about to have a child hit that stage and still in education not because they are lazy but because it is important for their needs to be supported in the education environment till they either have learn the skills they need or the complexity of having more then one coexisting thing hinders their ability at the time to get and keep employment at that stage. First was the pip reassessment which was done by Phone consulation and having spoken with them honestly about how Niki is affected both by her diagnosis and her physical issues she has with her hypermobility and joints which pop out sometimes and her anxiety issues about being out and about, they upped the mobility to high rate as well as her already high rate of care , then the advocacy appointment at your home to be able to deal with the forms and to have financial control until they have learnt the money skills needed to be able to manage it themselves. for us right now that’s a goal we are working towards, for Niki it’s the difference between Want’s and needs. that part was easy the actual applying happened days before the lockdown occurred the first time so they had a copy of her education plan her diagnosis’s hospital reports They also wanted a letter from doctor about niks needs which i got then when i supplied it to them they wouldn’t accept it so had to go back to the doctors to get a fit for work note explaining why Nikis disabities affected her ability to work right now .first we got help from citizens advise to
See what we would be able to apply for the options were Income support credits only because she hadn’t worked before so hadn’t yet paid any national insurance stamps. We were told at first once you get that it will change over to Universal credit. But at the Job center they said no we had to apply first for Universal creadit this was after weeks of being pushed between the 2 different departments,
So the application for UC went in and after about five weeks they closed it with the reason being Niki was in education still, so then the citzen advise helped us apply for the income support credits only, this gave us another big issue they were asking for a three month fit for work note and would accept the six month one we had already supplied for the uc claim we had to go back to the doctors to try and get a three month one for them which the doctors would not give us because she still had three months left on her privious one. so I had to phone up the income suppot people to let them know I couldn’t get one they were giong to stop her claim but agreed because of covid to extend it before I would have to get another one. complex isn’t it this stystem they also sent out a form for a health assessment which took ages to get everything copied again and wait for the new diagnosis letter to send all info off together. also put in a madatory reconceration for universal credit we hadn’t heard back about the mandotory reconcideration. On September the 24th my wedding anniversary
It was supposed to be such a relaxed day but started real complicated I got on a conference call with UC myself and citizen advise just to see if there was any feed back because I had been trying for days only to be put on hold given multiple numbers to phone backwoods and forwards between departments trying to get some feed back but had no success, so Citizens advice got through on business line they told us that it had been turned down because of the health assessment and fit for work hadn’t been processed we then had to end the call and phone the health services to see how long it would be before we would get an appointment they said they could tell us when and there were over a 100000 waiting , we explained Niki’s situation and that we had been sorting it out since March we asked if they had any idea of when this would happen. to be honest it was my limit point of frustration I almost lost it infact I did cry just because it gave me so much anxiety and because I wanted the day to be peaceful and special. I Couldn’t contact UC via journal because they locked us out, and because her case was temporarily closed. Some how i managed to salvage my anniversary day and gain control of my emotions again. To be honest I never before suffered with anxiety till we went through diagnosis of the kids it was very traumatic experience. by this time the fit note from doctor had run out so we had to apply for a new one and supply it which then meant citizens advice again had to do a conference call with me because again I was being passed between departments. I couldn’t get update through asking through journal still locked out. we managed to get them to leave a direct message for the person handling Niki’s case. They phoned back about 48 hours later with this reply great news we had some up scaling training and Niki’s case was one they got brought up, we are putting it back into be reassessed and Niki should receive some money while they are waiting for health Assessment to be done. we will get back in touch soon she shouldn’t be left in hardship while she waits for it.
also a couple of days after that we were allocated a disability specialist who phoned to talk us about supporting us with the calm we chatted about Niki and her Needs and then I was informed I would have to do all the health assessments forms again once its approved. I told them we had all ready done them and were waiting for appointment. she said they would have to be done again when they asked. Bare in mind I already had given all hospital diagnosis doctors notes her EHCP , her Letters from college about her course and she already had an health assessment don’t by these people for her pip in march. fast forward to december on advice from citizen to put in a formal complaint about Niki’s claim and to contact a disability legal expert .
I phoned UC with the Number they gave me to make the formal compliant to they refused to accept it but said I would have to go through Niki’s case manmager who has now been changed to someone I have never even spoken too and also leave a message in niki’s journal to say I phoned to make the complaint, they said i would be contacted in 48 hours . no call back and no journal entry. The person who had been supporting me since march for Niki;s claim was no longer working at the citezens advice. I had to phone there phone line and explain it again thankfully they have kept records of this whole prcess and logged every step of the way.
After speaking to them around the middle of december and them opning up a face to face meeting to help me write the formal complaint and also copying in the MP at Houses of parliment to see if we can just get some feed back and her journal reopened for contact puporses. we were asking them to rectify and back date all money owing to her and get her case approved. as we were told first it would be bacdated to her 20th birthday then they changed their minds and asaid from when she was awarded the credits only income support.
Having recieved a reply from MP saying togive it a couple of weeks and if i havent heard anything back to get back intouch with them for help. I stiil have had not even an acknowlegement that they have recieved it, or no journal entry with any feed back. so the fight for her rights continues. but here is another perspective her cousin who is 18 without a disability applied 6 months after her and recieved it with in five weeks the difference is ability to work due to her disabilities and her legal document saying she is entitiled by law due to her disabilities an education till she is 25. why do i fight for her education and these courses she is doing because the system saw her excluded multiple times, they saw her have to change schools three times she lost years of education and had to retake her exams four times before getting a pass. she was assulted kicked and puched in the head while culed in a ball on the floor and left with concussion by another student in school, and had to take her exams in a place where the person who did that was walking past the window where she was taking them because she only was excluded for three days. she was left with crippling panic attacks.
Now my daughter is thriving in a safe and calm inviroment doing a course she loves and is accademically thriving, by learning about early years which she already passed last year and going on to this years course in health and social care she is not only learning about others she is learning about disabilities she is learning about self care and she is learning about a system that is ment to protect vunerable people. she is learning about abuse and she most importantly is learning about self abuse and neglecting yourself. she is still suffering form anxiety and depresiion but she is giving education her all she stiil has very bad sleeep issues but she gets up for online class, she has routine that helps her. she is learning valuble skills to give her the best chance of not being on benifits for life but getting into a carer she can help make a big chang to bring her experiences forward to bring better understanding to how it feels for someone with coexitsting issues. In 2 month it is going to be a whole year since the claim went in.
So if we look back at what I said about the amount of people I was told was waiting for that much needed health assesment before there claim could proceed over a hundred thousand, How many of those have advocates or are alone trying to get vital suport, how many of those have the assessment and get turned down and have to appeal all the way to the courts , how many of them are living with just pip, and bringing up families. and you meet this doctor for maybe an hour, and you never no the day you go maybe one of your better days and your based on that for your entitlement instead of consultants who see you recular specialist who montor your health doctors who see you when you struggle, mental health proffesionals who would be working with you if there lists werent so long. Add pandemic an no teacher time accept a few online classes.
while also living with depression anxiety tourettes, joints they give way not seing you family or boyfriend for a year the social skills you were just beggining to develope before the pandemic put on hold cause you can’t meet up with the friends you just made.
What I want to see in the future moving forward is further development of the EHCP to cover the years between 20-25 to add the benifits into the policy to stop our young adults suffering finatial hardship whist having to cope with many dibilitaing things.
Niki was one of the first people to go onto the new EHCP system when it first begun around 2014-2016
Her diagnosis came just after her plan was in place when it was started up and after enitial issues because of how many needed to change to the new sytem we were supposed to get one person handle it so we did have to keep telling everything over and over again to different people, I had real high hopes for thios to be a collaborated process that developed more over time, and yes getting them Education and health care plans for my kids has been the big difference it is support that has to be put in place , its accontability when needs aren’t met, its extra funding for schools to meet them needs with the objective for those with education to be given the same oppotunity to schooling as thier peers without needs. Its the opotunity to impact the whole families life, it the future towards living an independant and forfilling life if it is possible and we should always hold out hope even if i won’t happen for some. it is acceptance, adjustments and acknowledgement that their lives matter too. they have the same rights as everyone else.
I though long and hard about writing this because I dont want to have all those feelings flood through me again that I felt way back but at least i have had that oppotuninty to feel even a little tiny bit of what my kids live through every day. You dont make change by sitting quite and burying all that stuff it is only in sharing and bring it out in the open that others can begin to see a wider perspective of a systemic problem Diability , Black lives matter, Gender equality, Diversity is thier its every where we can ignor it embrace it and be brave enough to stand up to it it and change it. not through distuction and violence that will never solve the issue it just passes it down the generations as a neagtive thing but be brave enough to wruite it speak it and find soloutions to systemically change it. you have to have an open mind to here anothers perspective and whether you agree or not not do to others what has been done to you 2 wrongs don’t make it right. you just have to look out side yourself right at this moment in the world and see exactly what society has become and it isn’t good.
If you lead with compassion care and love yes maybe an idealistic point of view but you can make a difference one person at a time that person goes on to the next and so forth.
Sorry I waffel sometimes but I am feeling more impowered the more I write , the more I talk to others the more I share. I am soaking up the essence of people I meet and they are showing me that people are real good underneath if you just listen and see passed your perspective.
My Youtube is beginng to develope now it is a lot less scary doing the videos than I thought it would be infact i am finding it is empowering me more.
Here is tonight’s one gainging Hayley’s persective on friendship.
Playing with digital and genral goofing around ending blog on a positive
He cracked a smile , I may have jabbed him wnen he pulled silly faces though.
Yep that seriously woman you forgot again look after I told him I defo packed all the decorations away.
There is one thing about my hubby he is brutally honest with me which I like sometimes and sometimes I want him to zip it and say nothing. Early we were just talking about the online stuff god help me I said your right and was going to talk a bit more but he ended the converstaion where he wanted it to “YOUR RIGHT”
The other day I was late and rushed to get dressed just as I was about to leave he woke up and just huffed, he hated what i was wearing my skinny jeans wiuth big boots. the look he gave ment go change you look like a chav. I think i spoiled his view for the more polished look he has become used to seeing. I guess i just got used to making more of an effort everyday now. Taking time for myself.
Toomrow its and early start Jake has to go into school for his Hospitality and catering exam at 8.30 in morning the last of the mocks 90 minutes long.
Anyway much love Faye xx
Share's welcome, new authors can do with a little help to get thier work out there
Good evening , how are you all doing oh yes the lovely photo capture above by Markus Winkler on pexel.com a great capture because it shows the word review, something all authors and pretty much any business hopes to get. I have had a few for my book and so far it has been real positive, I have another copy I am sending off to one of my contacts in Germany who is an inclusion officer so yes I think I am beginning to get my book to some more targeted audience who may find my book what they are looking for. another of my friends should receive her copy any day now and another real kind friend is reading it. I am working on some give away’s just to maybe increase my reviews, and get more feed back about it. I will be using the first addition copies I have for that because I have them in stock at home for author signings that were non existent last year due to lockdown. really the book is only just starting to get out there more. after many setbacks along the way. The first publishers going into liquidation, then having to get the print run copy back off them. That was a big nightmare to get through seems so very long ago now. at the time it really did have such a negative affect on my emotions I had such high hopes and with the kids help raising the funds for it and so many kind donations to bring the book about i kind of felt I let them all down, But the reality is that it was just one of those things it wasn’t something we knew would happen, they had been I business along time. still I am not the kind of person to just give up on what i believe in so the story continued and as most who have followed the blog from the beginning will know it republished in 2019 as second addition and was also converted into an eBook.
I continue to work on building author platforms connecting with others, building the social media foot print as a author and blogger and for the book. but what i have enjoyed the most is talking to people I have made some lifelong friends , met other families with very special kids. slowly beginning to build the You Tube channel for my work as a carer and for all things to do with family and books and yes more books are on the way i am just teaching myself adobe indesign so I can work on book formatting and practice layout.
I can say without a doubt even though it was super tough that it was the best thing to happen in my life at that time. I forgot I am so much more then I thought I was at the time I have realy held myself back on a lot of things because I got comfortable where I was. now I see outside that warm cosy comfy place is something more beautiful than I could ever imagagined, life outside four walls, outside my town country not outside my grasp anymore. I am on the ladder to brighter possibilities, focused, excited, and ready to work hard for it.
On the way meeting others with their own story to tell, and as much as I like writing now I love reading too maybe my book will hit there collection as theirs have touched my heart and will always be apart of my collection.
The thing I love about books is that it gives you a big insight into the author who wrote it a little peice of their mind and soul, books leave this mark on you to want to learn more, they can inspire you to make changes to your own life or they can just help you lose yourself in the moment. The more you read the more you want to explore choices out side what you would normally go for and suprisingly I have loved every book I have read over my life time. they make you feel many different things. I think when I just wrie when i am not to excitable and super happy I can really fine tune my work. I am a little more of an irratic writter when i am super pumped up, that’s when i find i make the most typo’s or have trouble focussing. Night time i find it better to write less distractions. so before I do the catch up of my first week back at work I will put links to book again. when things start to unlock and open up again Will finish setting up a shop on here so it is easier to directly order the book. i stiil have lots to learn before i can get that up and running but it is coming soon.
There is only a couple left in stock on amazon at this moment and they have a deal running so great chance to get it at reduced price. although you may want to get it from your own countries amazon store.
Paperback
Or you can download the eBook version through, Kobo. link below if you prefer a digital book and more of an online book reader.
Last week was a slow ease back into work mainly because of Covid and my different Christmas bubble so was more precautious wearing mask and social distance but this week we got through that with no infections so Hayley is back with us for the whole week so we get to see her smiley face again.
Last week with Hayley was all about her zooms with the day center, she uses my computer for them there were quizzes, friendship meetings, zoom bingo her favorite. and a scavenger hunt. Having routine for Hayley is very important and has kept her learning and really brought her out of her shell she is really advancing on some of her learning and she was able to see the numbers on the screen and find them on her card with only a little help she knew when she didn’t have a number. the visual prompts and patterns help her remember things.when things are part of her routine they become set in her memory you cant add things in if you only do them once other wise she will expect it the next week at the same time. she cant tell the time but there are certain things she follows that give her prompts for when things happen like she knows when her program Coronation street finishes it is time to take her medicines. she has menu’s she cant read but she knows that on Thursdays she has fish cakes for dinner. There are always ways to adapt learning to fit the individual’s needs.
Friday was back to work with Tommy and the other kids, we had a sit down meal together Faye’s restaurant I took orders from them. I would rather make something they will eat then waist food , the girls choose mac n cheese their dad and Dylan had some of the Greek Pastio I made with salade . we followed up with some games before I took them home, I missed them all as much as I missed Hayley while I was off over Christmas, so my plan with work as move forward over the next few weeks is double shifts with Hayley so she with us all next week then she will go home and the next week I am off till i have the kids on the Friday after so, I am keeping the work support bubbles Separate.
It was a lot of fun to be back with them all.
My little Tom all the he got so tall now
Most of my videos with Hayley and my family will be on my YouTube as and when we do them That’s why I added the YouTube subscribe link, but this one with Tommy was sweet though.
Jake’s had a real good week back of online learning a very positive return . Niki had her welcome back last week but she to will be learning from home starting next week. been a lovely week with my family too.
Any way Good night , sending wishes for good health and peace and lots of love to you thanks for reading
Much Love Faye xx sleeptime for me double tomorrow
Share's welcome, new authors can do with a little help to get thier work out there
Are yes good old fashioned scrabble something we have introduced into our home again, Great capture from Emris Joseph, completely sums up most of 2020, and the beginning of the New year, The passed year certainly has given us all mixed feelings, a roller coaster of Emotions going into 2020 the hopes I Had have been achieved well most of them any way the rest will get there in their own time. I learned along time ago not to put to much pressure on myself, Firstly it isn’t very productive secondly sometimes taking a longer route to the end result is better. I set myself little achievable goals and work my way through them.
New years resolutions are not my kind of thing they used to be then I would get fed up with the goals I set and forget about them within a month, Do You find you Tend to Reset the same ones Every year? always with the hope this year you might have the will power to stick with them.
My resolutions kind of started in 2016 and still am working towards them now, and it is a new year and I look back at what I have accomplished since then and I think thank goodness I kept going.
lets talk about some of the ones the majority of us set, is normally a weight thing this year I am going to eat healthy, This year I will get to the ideal weight, this year I will drink less this year I will quit smoking the list is almost endless of what we want to do. How many have achieved it they probably is a lot that do and there most defiantly is a lot that don’t if were honest with ourselves. It’ a bit like them faddy diets you do well your motivated and you do make it to your goal weight and then you begin to relax and say oh one treat won’t hurt, or I will just have one take away, a pattern of behavior and so the cycle begins again. by the end of year your back to where you started and looking at making those same resolutions again. Sound familiar what ever the goals this pattern of behavior most of the time continues.
So how about we think differently have a longer goal take a slower journey you find if you lose weight real quick the is a high probability you will put it back on quick too
For me it was the other way I needed to put on weight and only this year I am reaching the weight I am supposed to be and it is staying stable. so from 6st 1 now up to a health 9st 1 it has taken four years. I really notice the difference in my health, I notice the difference in how my hair grows, my nails, my skin is no longer dry.
So how can i show a continued longer plan is not only better and healthier option but also becomes your new habit. that sticks and is sustainable. I hold myself accountable every day through photos.
Here is a before and after Four years apart. I really hate how I let myself get that thin, or that I was so busy that I forgot the most impotant thing self care, That isnt the way to be if your a mum or a carer lets be truthfull our kids learn from us the people we look after learn from us. How can we expect to build thier confidence while Not working on our own.
You can see the difference right, Well every day I would take a photo and i dint notice the change at first not for months i was a slow prossess but after a while and lots of motivation from friends and family to keep it up I began to notice the change subtly at first , my skin wasn’t so dry my hair was begining to grow my nails werent brittle i got my apitite back and began to love food a lot, it wasnt always photo’s of myself though it isnt a vanity thing, i would cook meals and set the table and light candles, you can probally see that if you been following my blog or other social media for a while. So how come we never notice before we let ourselves get to that I will say dangerous unhealthy way, we ignore people around us, yes sometimes the truth hurts but do you really think your loved ones Friends collegues are being mean when they point things out or give advise ? because they don’t care or do you think its because they care and they try to help you but just can’t get past the barriers of denial we all get when we wan’t to avoid the truth. Personally i like being toldexactly how it it because I am one stubborn lady and I will go out no matter how long it takes and achive it just to prove I can. Being Stubburn is sometimes veiwed as a weekness I think it is one of my biggest strenghs it gives me fight and that kick up the backside I need on more than one occation.
The other thing is before I could blend into the background, Now its begining to not be possible to do that just because every thing fits me better now and dosent hang on me like a bag of old rags and because I feel healthy I want to wear my nice clothes again, especially dresses.
So what else yes the book wrote it and published it twice, despite things going wrong I had a good cry dusted myself off and carried on. Everything to do with the after parts of the book I work at every day. When you read the book it isnt writtten in a negative way, It is positive while talking very gentally about some important issues of awarness. you get to see the start of something that will have a beautiful future a healthy future, even in the challenging times.
New years Eve was great relaxed and ended in lots of laughter. Also I have been trying out new lighting I brought for Niki and Jake for christmas for we they do their social media stuff.
Game playing, music listening, mucical instruments, Face timing family and a good old fashioned happy new year knees up with just the five of us. Us adults even took it in turns to get an hour power nap before the new year came in. Oh and video messages for Hayley
Video for Hayley , Getting older so forgetfull with words somtimes
Jakes improved so much with his playing all self taught
.New Year came in with plenty of fire works from the neighbours gardens
The kids wanted me to go out the back of house instead of front Jake almost dragged me there . lol
Oh and warmer clothes when i say i like to wear dresses I like to wear them for dinner like going out for a meal just at home. Lockdown dinner party but I also love to equally go put on some clothes I can veg in too.
New Years Day
I don’t know what happened wether it was the sad mum dancing in the kitchen but some how i pulled my shoulder, couldn’t move it at all so spent the day resting it also got me out of cooking handed the kitchen over to hubby he always cooks most days over christmas period anyway, Besides I reminded him I am on holiday off work. it was a delicious dinner.
Those real bad Cracker Jokes lol
We watched a movie with Kids , then crashed think we were all tired.
On to yesterday Was the very last day and night with Josh here so really wanted to stay out the way and let the kids have most of day and evening with Josh, I had a mission to find his missing sock that always disappears when the washing gets done. I here about the phantom sock eater its always lived in my house. sometime he gives the back in wierd places like down the back of a radiator or under the pillows ocationally a couple of odd ones end up in my handbag or car, or is it them elevs up to mischief , well i found the misssing one sat down to drink my coffee and this happened.
yep I am a proper numpty sometimes all though I did find it.
Today our Josh went home had to get back for work and we have to get back to school and work here too. I will miss him lots not sure when we will see him again in person all depends on lockdowns again but for now he is back to phone calls and face time and we go back to our privous bubbles for work.I am so going to miss him stretched out on the sofa, and his and the kids play fighting and playing music together.
Any way good night sleep well
much love Faye
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