#emotions #caring #longweekends #space #family #friends
Hi how are you all keeping? Big hair change for me occasionally I have changed my hair to a darker colour on an impulse but this time I think I am going to keep it, I think they are getting over the shock of me not being blond now.
You know when your family likes routine and doesn’t always adapt to sudden changes its hard when your a more spontaneous personality like me. trying to tone myself down a little maybe then, I won’t get some unwanted messages.
It’s damn tough being a woman sometimes you put up with some unpleasant behavior, I would normally ignore it but this week it really got to me a bit, maybe it was just a combination of things that have been happening this week, feeling a little rough because of the second dose of vaccine, the fact there was a major incident at my daughter college while I was miles away from her thank god she wasn’t there and that the person was apprehended by teachers but this is the first time we have had a gun incident any where near our kids school, what bravery from the teachers or this blog could have been a very different one. It defiantly has caused some sleepless nights here, I spend most of my time helping my kids with there anxiety especially around schooling, You spend so much time reassuring everything is ok when they read things online, you never expect there anxieties or worry’s to come true, I mean how do you explain to them that it was an isolated incident when you never really know it is going to happen until it does, we discussed it a lot Jake had a lot of questions, he was coming out of his school at the time , for the first time in a long time his Grandad was picking him up and I was not there, police helicopters lots of police cars. I had literally just had my Jab and was getting back to my car to drive home at the time, My Mum phoned to ask if Niki was alright and I got messages coming through, after the first thing I did was just sit because it made me have the shakes, I had to give myself a mental shake because the reality was my daughter was at home safe with her dad, and my dad had my Jake.
Next I phoned home to see if they had heard and if the kids were ok, I just wanted to here my babies voices, and reassure them I would be home soon. Thankfully the roads were clear.
Then you think about all the parents who have lost there babies through gun and knife crime, your heart breaks a little the families that have lost loved ones through Covid and wars it makes you not like some sides of humanity. I wasn’t affected so much by vaccine this time just a little more tired then usual and an arm that felt like it had been sucker punched. all gone now though today I felt a lot better.
So also it highlighted that kids with special needs will need more support in the what would happen if’s.
Jakes perspective worried me a little there school had previously talked about school lockdown situations I ask what he would do and instead of saying stay in his class which is the procedure he said he would run as fast as he could to the year 7’s to protect them because they would be traumatized, out of all the years he choose that year group, and i am wondering if that is because he went through bullying at that age and wants to protect them from harm.
I am having a little trouble getting him to understand he needs to stay put and keep himself safe in his class and that it would put others at risk if he were to leave, and that is what adults are for.he was staying as he is year 11 he has a duty to look out for and set a good example to those younger them him. I know this is just a part of Jakes thought process and it is very different sometimes, defiantly something i will talk to his support staff about.
I tried to explain just how much his life matters to me and his family, he still said if it was a choice between the kids and him he would sacrifice him. Just how are we as parents supposed to process that, who ever said autistic kids have issues with empathy and compassion really don’t know anything sometimes they are so passionate it is harmful to themselves.
Lets talk about another issue I have had to deal with this week Universal Credit, my goodness they are the hardest people to communicate with,So you know after a year long battle I had for Niki to get her on it and to get her award for limited cappaity to work done, finally she was awarded it in april and we had a month backdated instaed of the year since she first applied, well i still have this appeal to do for the rest of the backdated money and thankfully it is being heard by a court and not the department i put a complaint in against, well the appeal forms are almost comleted but now her award has finally come through you would expect it to run smoothly, it didn’t her next payment was minus the limited cappaity money, So I left a note in the journal for them to ergently look at it and sort it out still the next morning no reply, so i phoned pointed out that she had been awarded it and asked why it wasn’t there. they said they couldnt put me through to the coach but would leave a message with the coach and they would phone with in 48 hours, did they phone absaloutley not, so i phoned again and i must admit that call left me really shaky, and more than a little upset, for once i told them they were incompitant and what they were doing was extremly bad for peoples mental health, I hate how you go to these departments for support when your at your most vunerable time, and they cause so much heart ache and stress i wish i earn’t enough to never have to rely on this unjust system for people with disabilities. I am the most polite and calm kind person but asking for help is very hard it’s embarrassing and people look down at you and make you feel so demoralized. It does pay to keep that pressure up on them to sort what they are entitled too, because by Saturday it was how it should have been. and done before her money is due if i left it to them they would have kept me waiting weeks to even reply. Never be sorry when you are an advocate you have others well being at the first and foremost if you upset others on the way to make sure they get the correct support and help for there needs. because honestly your just a number to them they don’t have to live with the consequences of there mistakes you and those you support do.
Still you can see even with that all going on behind the scenes i love to be positive and smiley, I don’t always feel it the that is the truth.
Work with Hayley
Last week was more walks with her day center more zooms more games menu planning, she even managed to lose 2 lbs which she was very happy about, I gave her a make over on Friday, and she finally got over my hair colour change she got cross at first , She said no your not dying it brown leave it blond. We did YouTube to she is loving them. although we were both feeling more tired this week.
we look so misrable but just been a long week we were happy.
Work with Tom, holly and Ellie on Friday night and Saturday morning was great, I love them so much.
Tom was a happy little chappy and he had not long got back from his pre meds his next operation is coming up to have the pins out of his hip and his hamstrings cut again , i hate that he has to go through surgery again. Mum mum has had her second Jab and is traveling down to have Holly and Ellie while Tom and his mum go to hospital, i am so looking forward to seeing her it has been a year.
Holding my breath to get a smiley photo with Tom, he likes smiles the rest of time I had my mask on. I have one more shift before him and his family go into lockdown for ten days before his operation. We did a lot of singing together he was signing while I bathed Massaged his legs and dressed him, while he ate his breakfast and meds. He slept very well on Friday he had a long day traveling to and from hospital, he had an awesome week at respite at school, but almost put them on lockdown when his temp went up but his Covid test was negative thank god. They got some weighted blankets they are very good Holly liked it she wanted a cuddle was heavy her and the blanket. Ellie was a sweetheart too was nice spending time with her and talking together.
The Docking of the dragon mission to the space station
Wow what an amazing experience watching that was a friend sent me a link to the live footage and i wasn’t disappointed, watching it at the same time as my friend in different parts of the world, made it all the more special a memory I won’t forget, Hayley was with me as well the first time she has seen anything like this she enthusiastically counted down, you feel that excitement and anticipation of this the apprehension of will it be a success, and amazingly it went with out issue, the views from the camera truly remarkable and full of detail, your heart beating fast the adrenalin that must run through the astronaut at that blast off. I was cheering with all of them when it docked safely, my family has always been interested in space and astronomy and what lies beyond our earth and solar system the miracle of the unknown it draws you into always wanting to learn more, they make you think about the possibility of other life out there, somewhere, what would it look like , would it be an advanced being, what they may look like. heck there have been so many movies and shows about it i always makes you think of things like that i guess that is why they sell out when they come out.
I have had this weekend off work and still have tomorrow off too so have rested plenty today was Greek Easter this year we mixed ours with the English Easter, simply because we couldn’t celebrate with our Greek family this year, its not the same with out all being together, so i just made my hubby’s favorite food, we listened to Greek music and ate a meal together with the kids.
Seriously getting a picture with my Jake makes me laugh so much look at that little kinda smile yes his hair got so long now.
Anyway goodnight wishing you a peaceful new week ahead,hopefully sleep will come easier tonight, we shall see if my kiddos go off early or take ages.
MUCH LOVE FAYE XXX