Wishing you all a beautiful Saturday, hope the insperation for you blogs comes easy and you continue to spread, your writing with the world . Have a lazy weekend here so hoping to be able to sit and catch up on some blogs I haven’t had time to read lately.
What I love about blogs is the different styles techniques and personalities you get to see through the written word I don’t know about you but I think reading has helped my writing improve a lot
Keep up the fantastic work.😁❤️📚📚📚📚
Share's welcome, new authors can do with a little help to get thier work out there
Great photo by Rachel Claire, finding time to write with a busy schedule is hard sometimes, I have had a little less time to do it then I would wish for, but I am sure as the year progresses and things slowly begin to open and as we come out of lock down that time will increase certainly getting a lot of paperwork out the way has been a gift. I have been a little bogged down with forms it somewhat dampened my passion for writing a little, to many words swirling in my head.
Paperwork aside it’s been a real busy few weeks, since return to school, we are now doing home Covid tests which thankfully still negative, I am due to have second vaccine at the end of April as well as my Niki and Hayley. Jakes pip forms are done and returned and i think i may have missed out his sleep issues been trying to get through on the phone to ask if I can get that added but have had difficulty getting through.
I am back on Monday to Friday day times with Hayley now starting this week and as long as we don’t go into another lockdown this will continue until she has her second jab then we will start her out in community with day center staff, We had an issue with meds we had to sort out at the beginning of the week, and Hayley had a blood test today or was supposed to have. I get that people get sick and have to take time off what was a bit frustrating though was receiving to messages this morning reminding me to not forget it it and to make sure we wore mask so we turned up with a couple of minutes spare only to be told it was counseled it thought maybe I read the messages wrong because they said they sent a message in the morning letting us know it was counseled as I left and got back in car with Hayley the text message came over literally five minutes after her appointment time. So defo not my mistake.
Hayley’s had zooms all week one a day she really loves them and catching up with her friends from the day center.
Hayley had some time off her tablet this week we have been doing some Easter arts and crafts I took her for a walk to get some supplies, we have used the Wii for a sing along, made some more YouTube videos.
I am also back on all night shifts with Tom and Girls every other Friday, which I am loving.
What else has been happening some fun times Mothers day was amazing i was a little pampered and had an amazing mothers day.
My mother’s day start with me being woke up with coffee and pancakes hayley was with us for a very short while it was my last night shift the night before.
Very yummy pancakes they were. then it was gift time. not big gifts but they were perfect and had me laughing.
See so sweet and the two for the price of one ice scrapers were the thing that made me smile most,
They improvised with the cards as they couldn’t find mothers day ones but loved there chioces. my oldest son Josh phoned and we had a beautiful long chat.
As you can see I find great pleasure in m y family they always bring a big smile to my face and so much love to my heart.
The Next big event was Nikis 21st birthday was impossible to keep some of the decorations secret as she finished college early the friday before and i was working the evening shift with the kids so had to prepare before I went to work, My hubby cleaned while I did the decorations. The extra pair of hands really did come in handy.
The kids were at ours for a couple of hours on the friday so they got to sing happy birthday to niki and she had a cake her friend from college brought her,
The decoration pink niki’s favorite colour at the moment,
We put on our party dresses always love an excuse to dress up, Before pressie time We played her childhood favorite song as she came in. Big bear in the big blu house childhood happy memory and throughout the day we palyed songs from the year she was born.
Excuse Jakes face mask the worst thing about them is they sometimes can make spots worse and he was embarressed by them. perfectly natrual part of the teenage years but makes kids self conciuous
She loved her gifts that arrived on time she has a few more still to arrive though. I love the reaction to the present her big Brother got her
Then we had a lovely meal before an evening of Karaoke and Bingo.
We got a little emotional at the last song of thee night, such a beaughtiful song and some how the perfect one to end the night reprsentative of your kids growing up.
A real tear jerker for us parents and it seems my daughter too.
We realy tried to make it the best birthday concidering we are in lockdown her boufriend is in another country and they havent seen each other for about 14 months and her family couldn’t be here.
We carried her birthday over to sunday by getting her photo’s printed off then I made her a birthday memory book.
She also got her anime costume she wanted for her birthday present from her boyfriend.
One day last week she had a Tik Tok go a bit viral we did together which was a great surprise it had mixed reactions some people are really unkind but the beautiful messages of support and realting by many people and kids that shared things. my daughter handled the negative comments well and asked others not to have a go at the people who are mean because she wants to spread kindness and awareness that everyone grows at there own pace and thats ok.there were many people sharing that they were autistic too, some realated to the message of not being able to read a clock and tie shoes, As a mother it is very hard not to jump in and give them a talking to but as Niki says she is an adult and needs to be able to stand up for herself and beilive me she has was well mannored polite and handled it with the humour the video was ment to be. Finding her own voice is something I am hoping I am helping with I definatley ecourage and support her being herself.
She enjoyed it so much she asked me to dress up in her costume and do it with her it made her laugh role reversal, and I am up for joining her in her world. it was alot of fun.
Proper goofing around she laughed when I kept doing her signiture pose.
Good night ,much love Faye xxx
Share's welcome, new authors can do with a little help to get thier work out there
Hi all how are you today, wow I haven’t written on here for a while since my last big blog just after Valentines day, accept the short post the other day, things get real crazy here sometimes work, family, and all the necessary paper work that comes with having a family with additional needs.
I am going to start blog with the challenges first then go on to the positive stuff. which I most definitely prefer to write about.
This last year really has come with issues of transitioning to adulthood, let me tell you something about that as parents we think once you get that diagnosis and support in place that overwhelming feeling and more knowledge you are handed with makes thing much better less complex that is defiantly not the case, you reach that transition place and keeping and getting services and support is even more of a battle field, i have found this with my kids and my work. The day center Hayley has been going to for most of her adult life will not be reopening to many of the adult’s with special needs. this was something that was planned way before lockdown, and lockdown gave them the opportunity to sneak the closer in without any notification to the clients or families, as well as the now decision to not provide transport and to re-access how much of the small benefits will be taken off them to pay more into there own care. They are changing it to more community based settings different hubs and community halls for which families will now have to drive them to. for now we still have zoom meetings for Hayley but as they open up more it is hard to know the impact it will have on her, Hayley has loved that day center she has loved the staff and friends, her boyfriend attended there so she got to see him quite a bit. If it was a whole day in the same place its 2 journeys , if it is different places in morning and afternoon , how does that really work for families without transport. I know it will bring many challenges for me because I already have 2 different school runs and they finish almost the same time. they all get worried if i am even a couple of minutes late.
Niki’s UC claim has finally been awarded and for now she has limited capacity to work, the backdated money is a challenge to get back they did back date it a month, but not to when the first application went in last month, and as of now although she begins to get the first payment in April and the official complaint was acknowledge in January they have yet to give me a reply to complaint, also I now have to fight for the back dated claim through the appeals court we no access to legal advice other then the judicial law at the time they turned down her First UC claim that said it was against the law to not do a fit for work assessment on disabled students in education and as Niki was in receipt of high rate PIP at the time, she fit into that category so they therefore acted unlawfully towards Niki, I really don’t know how long this will take given how long they take to answer. There are just so many barriers and complications accessing information, getting through to people appeals mandatory reconsideration. they give you the wrong info and advice so much so you repeatedly have to supply info again and again, while I am not moaning about it , if I don’t share our experiences of what we really go through as families or advocates, we really cant highlight the barriers and injusteses we face on a daily basis.
Mental health Support is another area thats problamatic , getting my kids to talk to us about there emotions and mental health is one thing getting them to speak to others when they can be completely non verbal with people they don’t know is something different, We made a tiny step forward with that as far as niki goes her annual health check she mentioned to the nurse she was struggling, she made a list of things she wanted to ask and showed it to the nurse, who then went to discuss with the doctor, we recieved a call back first we deblt with getting her another assessment for her hypermobility as her joints have been popping out again, we are waiting to speak to the phisio next week she also has to have some bloods tests to, all to do with that, then the doctor asked if I wanted a referal for her to speak to someone about her mental health, I asked the doctor to hold the line while i spoke to her and asked, her reply was no they will lock me up and throw away the key, see sometimes barriers are the anxieties around going to speak to someone about it , my daughter can read very well she has friends with mental health who went and were admitted to hospital. this puts her off even talking about it outside our family. She was really beginning to suffer alot over this last lock down, not only with her depression her tics have been bad aswell. her sleep has been all over the place. Her college work piled up a little. However she did speak to her teachers about it apon her return about it and has mostly caught up with her work while she was there that in school teaching time really making a difference,
Jakes been up and down too, sleep all over the place but I think now that first week of school is done and routines and structure come back they maybe be able to see things through different eyes. I think everyone has struggled a lot no matter who they are during lock downs but for special families it is way more complex. to stay most families have been left without support and services would be the truth, i will honestly say other then support through school and day center via online we didn’t have support the truth is it is the only support we have had as a family since diagnosis.
March has seen some lovely times for Hayley her Daily zooms, arts and crafts our YouTube cooking and dancing Dad has Finished decorating her room so when she goes home Tomorrow she will get to see it all freshened up,she is very excited. Self care some reading and Games Hayley loves Cards Bingo and Deal or no Deal, we even started having some walks round the block for exercise.
Tom, Holly, Ellie, Dylan
Been having the most amazing shifts with them, they have been through a lot over lock down.
There is a girl in the Elves holly loves diving in the middle of them .
The last couple of shifts with the kiddo’s
Toms 12th birthday wow my best little buddy turned 12 years old yesterday, we had him over for about an hour with his dad yesterday to celebrate his in my bubble, Preparing for Tom’s Birthday with Hayley the kids were tired from school.
Plans Changed for them so that’s why it was at mine.
He was a little tired from school and having had his sleep meds but was able to have his pressies and cakes before going home to bed.
Jake helped his dad change the breaks on my car he got a little lesson on how to do it, was so nice to see him go outside for a while in fresh air.Niki helped with food shopping and realized just how much it costs, she got to use the self scan, and we just have been spending quality time together.
Then there is the cooking of Greek food, not every day but a few times a week.
Stuffed Tomatoes and Aubergines
Today I made some new things for the first Time
Not bad for a first attempt have too adjust the recipe just slightly then it will be perfect.
Book Marketing that is beginning to make progress got the book out to more places, also met some other authors one especially i met just the other day and we exchanged copies of our books for each others opinions but also because even though our books are for the same audiences they are very different and unique books that may help other families in some way. because of our journeys have many similarities, I would not of met so many other parent carers or parent authors if I didn’t write Emo the Emotional Elf.
The authors Name is Ali jeferies
It is called Dear Parent Carer, THE THINGS I KNOW NOW I WISH I KNEW THEN, that one sentence there is very relatable to most parent’s I think and while I have only just begun reading it and what I read so far is great and the topic of supporting her family with mental health issues a topic very close to my heart and a fellow parent carer herself I really felt it very easy to have a conversation with her, about our families and some of the struggles we have been through and how her kids and mine find the thought of seeking mental health support, when I told her about what Niki said about locking her up if she talked to some one as a parent she could relate to that with her child.
You have no idea how becoming an author and writing helps us personally and in turn our families.
I am still in the middle of reading another book aswell which has me captivated and learning new things completley different style of book which I love and The author Joe Maddox has an amazing way of mixing facts about the space program and his life and passion for collecting space memrobilia he has the largest collection.
But also a caring and loving heart, a very gifted man.
Our family has always loved anything to do with space and science some of our favorite times have been at the science museum in london.
My Oldest Sons Photo’s he captured.
This is my favorite shot of his. he took it with his camera he brought last year around his Birthday time.
Before I say goodnight i am going to share the links to My book Emo The Emotional Elf
Paperback , also avalible on Barns and Noble, Foyals , Amazon, Waterstones, abrilis, Blackwells, or you can find links on Good reads.
Hi everyone , things have been so busy here for the last couple of weeks, my Brian is so full of annual reviews appointments and appeals, not much space for creative writing but will be back shortly after I get these forms and things completed.for now though Have been working on our you tube with Hayley as well. With the kids now returning to school properly for test of week and double shifts with Hayley. Time is a little limited.
For those celebrating international woman’s day yesterday hope it was how you wished it to be.
Share's welcome, new authors can do with a little help to get thier work out there