Hi all hope your keeping well, Today’s been a big challenge started off beautifully Jale woke early not quite as early as me, Seems school run mode kicked in I woke up at 5.30 had all the washing done and kitchen and dining room all sorted before Jake even woke up, I even picked some fresh flowers from the garden for the table.
Jake looking pretty smart in his new grown up six form style, still wearing his face masks when outside our house. But glad my kids are both double vaccinated before school went back.
Niki doesn’t return to college till the 13th of September so still some time to get herself super prepared and ready. First though sleep patterns Jake has been totally exhausted after school and has ate and slept almost as soon as he got in, since he returned yesterday. He was so excited this morning he was very stimmy before and eager to go back so much so he was trying to get me to leave at 7am. That didn’t happen way to early to be at school he got their at 8 so he could have a little time before school starts just to get used to his surroundings and be relaxed in school environment. So this morning it was too Jake off then on to pick Hayley up and drop her at the day center she was their for the whole day today. And I Had free time to cook.
I made Greek food haven’t got all the pictures yet because the meal didn’t happen tonight as expected but tomorrow will be different.
Preparation time took the longest but had the music playing while I was in the chef zone
Greek meatballs, (Keftedes) home made Tzaziki, I also made a Greek salad and homemade chips with some pitta. I made an alternative veggie meatballs just changing the meat quorn mince and Meat free pork sausage shallow fry them and adding all the same other ingredients, I let it sit in a bowl in fridge for thirty minutes this helped with them sticking during the rolling and a little flour before shallow fry them. I left the lemon sauce off them menu will add when I make more tomorrow.
I did make some for the kids and for the first time Jake ate the meatballs with all the ingredients added and liked them some that made feel happy, that he liked them maybe another safe food to add to his list.
For desert another Greek cake, Revani now that turned out so well. It was super yummy
Some Greek dishes are new some I have done before and some instill wish to try and make.
Today inbound out who are great friends I can really talk too.
I am going to look at this day as one of them days you wish you could forget parts of and focus on the beautiful parts of the day.
Go to my little imaginary island, yes I find that helps on tough days to imagine you on a beach or something just sitting with the stunning view. It gives you a chance to process things and center yourself. I give myself little pep talks ❤
That’s it for today Tomorrow I have more stuff to share now though sleep early start good night.
Much love Faye xxx
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Good evening Hope who ever is visiting this blog and reading this post is doing ok, it’s so easy to write a blog and then just get on with your life but I am always thinking about the people who give up thier precious time to visit and read what I write. PLease Excuses the link video link that isn’t working having some tecinicle issues awaiting support hopefully i will get to remove it and edit it out after publishing. maybe it was to big a file. also had to renew buisness plan though it did it automatically after I changed to monthly payments.
What brings them back again. Sometimes I get a littles writers block more this year maybe it is just that so much has gone on and so much is changing constantly life is suddenly beginning to get back to that full schedule, only it still isn’t quite the same as before the pandemic. Before we had pretty rigid routines for everything thing. Times and places were the same even down to when shopping was done we have a few more weeks till the schools and colleges go back here I am not going to quite know what to do with myself when everyone is out of the house. I will have more time to focus on writing.I love it so much though. So now I have to stop procrastinating and just write from the heart.
First I am going to start with saying the children passed thier exams you know I think not having that pressure of exams and performing on the day and all the anxieties that go with it I think has definitely worked in my kids favor they have always been better in class then exams. they have had a real confidence boost which will take them in to the new academic year on a great start. knowing that they are more then capable of receiving and achieving great grades.
Niki is going on to level three Health and social care this term the second year of her 2 year course her college phone and made sure all her needs are added onto her provisions next term and they have actually added her walking stick into that now she finally has the go ahead to take it in with her. we are still waiting for her pain management assessment and appointment.
Jake is going into 6 form and is studying business studies, film studies, Geography and music EPQ, he wants to do the music one on the emotions around music and song writing , what they make you feel think ,this is very good for him firstly because of his emotional regulation and understanding that but also for understanding others perspective.
He really gave such thought into what subjects he choose and his reasoning behind them, for him they are the best choices. something he finds enjoyable and easier , something that helps reduce his anxiety and understand more, something that will challenge and stretch his mind and something he has difficulty with. All these thing will bring his skills and resilience up. Jakes nose has healed from his op to repair the break, he also has had his second vaccine, so will be good for school, the nose op was a success and its healed straight now the swelling has gone and he is happy with how it looks. we are having issues getting him to wear his glasses, since they have been changed but again I think it is more to do with what others make him feel when he wears them super self conscious. we are still waiting for the neurology appointment for him migraines.
Little celebration treat flowers for them both and Pringle The bubbly we are saving for another time.
We were being so silly of results day , the fact the kids are proud of themselves is the best feeling Jake said if thier weren’t cars about he would of actually skipped down the road. but I was trying to capture his big smiley he had but he kept ducking just as the camera captured the moment he was laughing so much.
Whatever Life brings next for them. I have full faith in hope in my heart that this is the beginning of something special for them , a more in depth scene of self more understanding of themselves, more strength to get them through the anxieties and struggles they may face love all around them to flourish and support and continued understanding into thier health needs.
Out and about First thier was my Great Nephews $th birthday party His mum made it a day to remember it was beautiful going to the outside garden party and even Spiderman turned up to give the birthday boy a surprise visit and ride in his car. All the kids and adults loved it. his sweet reaction of running into Spiderman’s arms all the kids chasing the car down the street. then coming back and waiting to take turns sitting in the car for a photo, while i can’t share all the photo’ I have picked a few of my favorites with my own family to share.
There was games find the super Hero’s the older children hid them round the garden, there was whats the time Spiderman, Niki did a little spider web on all the children and adults that wanted it’s faces. Uncle Tony was on build a bat cave as he brought it for Noah was very humorous watching him spend an hour and half putting it together, my Jake gave him a hand Noah lost interest in watching the process after 5 minutes and played dinosaurs vs super hero’s with me . What he didn’t realize is that while we were playing i had actually got him to tidy his toys neatly for his mum to have less work after the party finished. He reminds me of Jake when he was little thier interests at that age are the same. Like Jake he could name the dinosaurs easily he even sorted them in to meat eaters and plant eaters pretty good going for a four year old. He did tell me off when i tried to ask him in a random order what thier names were made me start in the right order at the beginning of the line. He got his uncle and uncle Tony dancing to Zorba the Greek with him. before putting on the baby shark show multiple times you got to love kids when they want to show you something.
My hubby and his brother had us all confused it is so funny how much a like they are my hubby is the big brother when Tony first came in with his back to us I really though it was my good job I didn’t go an pinch his butt or give him a big hug, lol It was nice all the boys and Ellie were all together again its been so long. It was a real beautiful day.
Night out with Grandad
As Grandad wasn’t able to be thier for Niki 21st birthday because of lock down he took us all out to karaoke to celebrate her exam results and birthday we took a little cake, got all dressed up and had super fun.
I love the Picture of me and my Dad
A clip from Niki Singing bless her .
I got up too excuse the voice but I find it really relaxing to sing, it also helps me get over that stage fright a little They gave us these little covers like face mask to put over the mike we all got a fresh one at the start of the evening.
We gave Hayley the Job of organizing the surprise birthday cake with the staff she even managed to keep the surprise from Niki this time never tell Hayley what you do as a uprise she always reveals it.
Moving the blog on to Hayley now she is such a great person she is really very funny and sassy, she is learning so much lately and is really becoming out spoken standing up for herself making her wants heard I think this intense time I have spent with her over the last year and a bit has been so good for her just that full on one to one time, getting her the tablet and laptop making our YouTube channel and experiencing so many new changes a long the way.
Her speech is getting clearer she isn’t mumbling as much, she does still repeat thing you say , and still will play out all conversations when she is sitting alone, her Zooms with the day center have stopped now replaced by in person three full days 2 half days so back to all 8 sessions a week. this how ever means another change to my working hours but it is more or less back to pre pandemic hours but that good though.
Always smiling the pair of us.
Work with Tom and Holly
What can I say that were on a different planet this Friday when I turned up both were in happy excited moods,
Tom and me made a video for my my his Nanny who is in hospital at the time of recording she has been poorly for a week but thankfully is home now and the doctors are going to manage her care, which is a good Job as they have an increase of ovid cases at the hospital where she was and although she is double vaccinated she is at high risk of getting very poorly if she should catch it. plus she really doesn’t like being in hospital the food for her has not been accessible to what she can and cant eat, and because the ward opposite hers at the beginning of the week had a case of Covid she had to be moved she hated being put on the older persons ward, the screaming kept her a wake it isn’t good for recovery if you cant eat or sleep. she has always had a fear of hospitals anyway.
Tom was really cute he was laughing we danced and read Horrid Henry he wanted the story about Horrid Henry getting an injection, Toms 12 now so after allot off discussions with his specialists and his doctors his mum and the consultant decided tom should have his vaccine he has now received his first Jab he should get his second in about 10 weeks now. watch how he engages when you talk to him.sorry video hi side ways i haven’t figured out how to change it when I don’t take video in landscape.
After we played a little together and sang songs tom and the elves had a conversation together he was really trying hard to talk.
I played the usual night songs to Tom after we read together and then left his room five minutes later he was asleep, then it was Holly.s turn for a bit of crazy time to get rid of some of her excess energy.
She is as crazy as me we are both a little hyper but i have found with holly a burst of physical activity before she has to go to bed really helps her settle down quicker .
I find phone timers really affective for this game you have to find different poses to get into in that 1o second time space to catch the great shot. we do things like balance and push ups or just different excessive when she wasn’t screaming with laughter we got some great shots for her memory book.
Then we snuggled on the sofa for ten minute calm down time.
See what I mean totally goofing around. Tom and Holly slept all night. I sat and had a quite cup of coffee in the morning and I totally sent this selfie to hubby
Tom woke up about 7.30 so we start his morning routine choosing a song to start the day, while that is playing in the background we choose his clothes this time he chosen blue shorts and T-shirts and he also choose blue socks with a red stripe. he is pretty good at getting the colours matching. next is running bath while i get him ready and the hoist under him, I set his clothes and medical cream and new dressing to go round his peg. Tom is prone to infections in and around his peg so making sure it is clean dried and has the medical cream on is very important part of helping that get resolved quick he does have oral antibiotics but he had already finished them the day before I was on duty. I work every other Friday night with Tom and his sisters. Although the last few times Ellie toms big sister hasn’t been thier. Using the hoist is a god send especially when bathing now Tom is heavier and taller lifting him is not an option. I feel sorry for all those families that don’t have hoists. Tom Chooses his bubble bath body wash / he loves having his hair washed and likes it when you make it spiky. He absolutely loves to splash me too he thinks it is funny.
Next it is hoisting him out the bath so i can put the changing mat that is attached to the bath it is a full bath size one have his clothes and towel ready. and cream for his massage. it helps relax his arms and legs and make them loose . He has been having painfully arm spasm’s the last month. I dry him first then start his massage neck shoulders down his arms hands and fingers then repeat the same with his legs until they are loose put his bottoms on make sure his tummy around his peg is dry before applying the cream and dressing. and getting his t-shirt back on and hoisting him in to his peapod chair. Give him his inhaler with the nebulizer. Its great to do that before you try to feed him so he coughs up anything that layed on his chest over night. he can’t just cough like us some times you have to oat his back to help it come up. he wasn’t as rattly this time on previous times when he was smaller I found it affective to lay him over my legs with his head slightly low and genitally pat his back it used to help him bring up a lot of stuff off his chest. Gave him his meds via peg. and tried to get him to eat some porridge he has been off his food a little his dietitians are working on a new plan for feeding when he refuses to eat they did trial the manual pump but it kept making him sick so they recently stopped that and a decision is in the process of working what will work for Tom. His mum then sat with him while I just cleaned Toms bathroom and a bedroom and therapy room i like to leave thongs clean for when the next carer arrives to take over.
That is all for tonight Wishing you a beautiful evening
Much love Faye xxx
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Good Morning, hope your having a beautiful start to the day.
Different post today and while it shows my book , This post is about the people reading it.
In Honor of my beautiful friends from Uganda
Yesterday I received these beautiful photos from this beautiful family from Uganda, Sebba, Sarah, Hilary, and Joshua, We have been talking and sharing photos of our families for year’s. So it was such a gift yo be able to gift them a copy of our book. We share our happy moments with each other and have talked about many things over the years, we shared birthday photos. When the children have been poorly we shared both of our publishing Journeys. Me with Emo The Emotional ElF And Sebba with his book Windows of Uganda. Now I asked their permission before sharing these photo’s with you all and while I love promoting and getting my book out into the world. I would love to help the also get theirs out there because it be if it’s them more as a family and for a community of strong women, so with this post I would love to share both the link to their book and to their foundation. I am very fortunate yo live in this country and for the massive support system here and all though it’s floored In many ways as is frustrating to negotiate for families with additional needs, we are in a blessed position compared to this beautiful family and the women of Uganda. You probably No by now a lot of the work I do involves caring and education and spreading a kind and uplifting and positive out look in support of all families everywhere. I am passionate about children emotional and mental health. So if you have something to spare by their book or donate to their foundation imagine the good it would do for them and their community read their story. Because all they want is to empower mothers to start all businesses so the children can get an education. I am happy yo get my book to other families one at a time I don’t write for reward only for very good causes and to make even just one family smile for a moment. They loved the book and said I was an inspiration but they are the ones who are inspiring those smiles through every day have made them feel like family.💗😁
Wishing you a beautiful day 😁 I did want yo share the link for the foundation here but it isn’t letting me do that, but you can support by buying their book.
Much Love Faye
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Lots to share since the last blog and our oldest son came for a visit, its so surprising how his two weeks home have gone so very quickly and he left on Wednesday to return home and have a few days rest at home before returning to work. we loved having him home and getting to spend time with him. Trips out to town Hayley joined in
Hayley loved the Lego paw patrol selfie stands, she also wanted to choose a new dress for Josh’s birthday dinner that weekend, Mum and dad and Hayley came and my sister in-law niece and great niece and nephew, unfortunately some of my family were not able to make the garden BBQ but what an amazing day it was fun Family music and foos, the weather looked like it was going to be terrible so we put the gazzebos up and hoped for the best and apart from a very heavy shower it was a dry and lovely day, so much laughter singing and dancing .
Preparations went on in the days running up to last Saturday this is the bit I love the most playing hostess, the cooking the adding the little touches, I love being around the kids they bring your house alive.
The boys helped thier dad in the garden get it all tidied and the extra pairs of hands putting the Gazebo’s up were very much needed.
Time to get all dressed up before the guest arrived
We just got finished before mum and dad arrived then my sister niece and her children, OMG they have grown so much in this time we have been apart, smart funny thier personalties are so amazing Little Molly and Noah.
The way they danced Little Noah doing Zorba the Greek, and salsa and Molly putting on a little musical theater show now she is a budding actress in the making and it’s amazing when Greeks get together after time apart how listening to Greek Music brings you out all emotional, you just feel it in your soul every one got to take turns in choosing the music. Little Noah choose Superman song and Spiderman we were doing all the actions together.
Our beautiful Mum
I love these guys so much.
This was before the huge down pour which I absolutely danced in Jake followed everyone else stayed absolutely dry under the cover.
The rain was so cold but refreshing,
No Party is complete with out a little dancing old school. the kids joined in you can tell they love old school type of music Hayley also likes a great dance.
It was such a charming relaxing day I hope going forward to have more of my family come and enjoy our garden and music, and our hospitality. because we just love having them here.
Moving on to the New week I had to take a couple of days holiday from work as I had to take Jake back to walking to have his nose looked at again they booked him in to have it reset on the Monday telling us it would be done under gas an air it was booked in for Wednesday the day our josh was due to go home they ran a Covid check on Jake on the Monday to make sure he was clear for the op and i took one at home so I could accompany him to the hospital.
We had to get up at 5 am to make sure he had something to eat as he couldn’t after 6 am, understandably he didn’t sleep well the night before he had anxiety. so after he ate i sent him to go have a sleep this way he wasn’t awake thinking about what would happen at the hospital, when we arrived they weren’t not going to let me stay because he is 16, but i should them my negative result and presented my vaccination card and explained he is autistic and has anxiety disorder so they did let me stay with him we discussed the op with Anesthetist and surgeon who said they should of told us it would be with gas and air it was to dangerous to do that way. To be quite honest I wasn’t sure if they meant for Jake or for them because he is autistic and has anxiety, and he is a tall boy . we spent the time from when we arrived till he went up stairs which was about 4 hours sitting in a corridor outside the waiting room as i was with him we weren’t allowed in waiting room. He has never hurt anyone ever. still normally I would be allowed in the room until he is asleep but they didn’t let me in their it was horrible sending him down for his op like that I wasn’t allowed in recovery with him either spent the time sitting on the floor outside recovery waiting for them to call me to pick him up. I can’t fault thier work with Jake although we almost had a moment before op when a second surgeon came down and said to Jake thier is only a 20 per cent chance he would like how it looks . Jake almost changed his mind about having the op. I don’t think they really have an understanding of the impact of their choice of wording can have on an autistic person or even someone who has a fear of needles.
Jake did say they treated him like a king in recovery bringing him toast ice-cream and his favorite biscuits, he did have low blood pressure all day which is something that he lives with. so a successful op for now just waiting for a week till the supports on his nose comes off to see if it made a difference. Their was one thing though that bothered me a lot and that was his discharge papers it mentioned the op and one of his other issues have been resolved then for some reason they wrote his autism had been resolved which is far from the truth, what by snapping his nose back in place his autism just suddenly resolved. Maybe it should have been autism has been diagnosed. That’s his records that I have to send off for his support to be put in place. I am defiantly going to put in writing I want that changed. Do they realize how many barriers there are to support services which is the reason people go through diagnosis in the first place.
So yes that’s the only issue I had with Jakes care not the physical care but just wording on the reports And the fact they have these great big visible signs in thier entrances with the sunflower lanyard and saying thier a hospital that supports invisible disabilities even some of thier staff were wearing them. Believe me my son doesn’t like the fact he is autistic because of the way others treat him because of it he shouldn’t be made to feel ashamed of it or that he has to hide it because he is also laybled as high functioning and masking is hard work and exhausting pretending to be something to make others happy at your own expense is never something anyone should feel they have to do because it doesn’t help with thier anxiety to do that or thier depression.
Jake obviously wanted to get home before His big brother left so they didn’t keep him in the recovery long and he was fine to be released I think he must of expressed he wanted to go home to them I cant be sure though I wasn’t thier with him.He spent the last hour with his brother snuggled on the sofa before I dropped Josh to train station
Thursday Jake was sleeping and relaxing I went back to work with Hayley and the evening was my hubbies turn to watch Jake, I had a mum and daughter evening pre booked Niki brought tickets for us to see he friend perform is a pub in Brighton. So Niki planned everything from the outfits we wore yes she played dress up mum in her quirky little style and get mum to colour her hair pink. She has been asking for my hair to be pink since she was 8 and as she starts her new course at college soon she had to have her hair back to her natural colour so she got to express herself through me. it was a very bonding moment she done my make up to.
she wanted us to look a like but in opposite colours , Niki loves her COS Play it really helps with her anxiety to create characters I think since becoming an author I am willing to just go with the flow creatively she has written some amazing stories as well.
We caught a train to Brighton had a snack when we arrived and made are way to meet up with the band at the bar, it’s an amazing little place.
The clothes were appropiate for the evening, and if we hadn’t dressed up we would have been the odd one out.It was the best night I have got used to the music now as it pretty much plays all the time in my car when Niki is in it.
It was her friends first gig and maybe her last she didnt enjoy it but i dont know why she was so worried i thought she did an amazing job and she got a round of applause and cheer from everyone i wont show the phtotos we got of her because she is very perticular of her phtos that go online She doesnt like how she looks in photos . what are wwe doing to our younger generation that they feel so self concious. It bothers me that so many are affected . We have a lot of work to do as a society to change this thats why I like to empower other people to be themselves, I know my kids are the same.
Me I just wear what ever sometimes I wear make up but I am happy without too, also I am not afraid to been seen looking a mess to, I am super comfortable in my own skin.
Niki was like Mum we have to get a bathroom selfie all the ladies do that on a night out , lol.
We stuck to orange juice although a glass of the good stuff would have been nice but we were some where we hadnt been before and they didnt have what we would normally have on a night out.THere were four bands playing on the night I felt like a teen again when they signed my hand after we booked in they do that so if you go out you just show yopur stamp to get back in .
Candy Fox was the first singer and my daughters friend and where she has this new style from.
Second was Katja Macabre was second up got the floor jumping her first gig since lockdown and what a show she delivered here is the Link to her official page and where you may find her music.
Again I like to share the offical links for you to check out we didn’t manage to get PHoto’s because we were by this time at the back of the room as we went downstairs in the interval to sample some of the vegan food they had on of it was Amazing my daughter loved it said it was the best she ever had.
The Pipeline in Brighton is definatley a place to go for a night out friendly werlcoming it is small but thaty adds to it’s charm. the prices very reasonable. it is definatley somewhere i would be happy to have an evening out at again Me and Niki wore our mask most of the evening when people were in close proximiny to us, but taking them down occationally for photo’s or if we were in a space with others.
The link above is for the independant restauraunt /bar if you love rock
We even got to sign our names on the wall. My daughters other name for when she cos plays is venus.
First time my daughter got me to do a tik tock ewith her in a Train staion but that I will keep for just her .
Her friends boyfriend was going to walk us back to train staition but he left early so me and Niki made are way back earlier and missed the last band as Niki doesn’t like the dark as she has trouble seeing in it so really was a good job I was with her or she would of been pout in a vunerable position of making her way back herself at night. while I love her friends they do tend to say one thing and change things at the last minute so it’s hard totrust others with my daughters saftey. over the years this has been a big issue.
Friday was back to work mostly i was oncall for hayley as and driving her to and from her daycenters she had friendship club on one side of town in the morning so i dropped her off then pick her up at lunch time feed her and take her to her next session she did arts and crafts in the after noon made a beautiful h For hayley had the mickeymouse colours it is for her gym wall at home
After that session ended it was pick her up then drive over to pick dad up from shopping and take them both home before coming and cooking the hubby and kids dinner before my night shift, I get about two and a half hours between finnishing work with Hayley before going to little toms house for the night shift.
He was in an amazing mood his dad took his mum out for dinner so it was me Tom little Holly and Dylan we played a game of piggy in the middle had pillow fights obviously tom just watched and laughted on the pillow fiught but holly she is brutal with a pillow. then we played some games Guess who first.we used hand to communicate with tiom 2 choices left for one answer right for the other and he looks at which one depending on his choice. then Dylan joined us Holly and Dylan against me and Tom playing the tipping point. Tom was suppossed to be on my team but was trying hard to verbalised his answers for the other team i was ganged up on but me and tom one.he stayed up till 9,30 with us didnt want to go to bed I Just got him settled in his room when mum came back he went to sleep very quick and i spent the next hour watching a hero movie with Holly and Dylan before sitting in Tom’s day room the others wetn to bed. It was nice to see they have finally got his hoist back as it went off to be fixed .
Was a fun filled evening. This morning i went in to Toms room he was laughing but had his eyes closed pretending to be a sleep, i said good morning Tom i know your awake are you going to open your eyes and show me your beautiful smile. he was really laughing I helped him choose what he wanted to wear for the day then gave him his bath while he listened and we say along to his favorite music. I gave him a massage to help ease his muscles got him ready and gave him his meds.before handing him over to his other carer who arrived .Tom has been having traetment for an infection in his preg so his mum called the nurse out this morning as it stiil was red and it seemed to be causing him discomfort. he did not want to be in his vchair this morning once he was dressed he asked to lay down.
After i left his mum phoned and said he had to go to hospital the nurse had been out and she couldn’t change his feeding peg so he had a trip to hospital to do it. He is home again now .
My mum phoned she still has pain from her fall last weekend which on multiple occations i told her to get checked out, she said “I am your mum you can’t tell me what to do”. to which I replied act like it and practise what you preach. she did phone and as she couldnt move to get to car for hospital they sent an ambulance they didnt take her in though if its a broken rib they can’t do anything anyway so they uped the pain meds she is on. hopefully it will heal quick, so both Tom and Mum are at home and i can finally relax. its been one topsy turvy week.
have a beautiful weekend
Much love Faye xxxx
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