#caring #family #Music #Backtogether #hospital #creativeart
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.
https://www.facebook.com/KatjaMacabre
Her band mates on the drums and Guitars were wow. so much talent , but yes I loved her show.
next up was Princess Alice Manor
https://www.facebook.com/PrincessAliceManor
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.
https://www.thepipelinebrighton.co.uk/
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