#emotions #families #caring #birthday #returntoschool #paperwork #bookmarketing #YouTube #spaceandscience #DearParentCarer
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.
Good night bit of a long blog but it’s been a while .
Much love Faye xxx