#Caring #family #Emotions #birthday #study #EHCP

HI everyone , hope you been keeping well.

Why did I choose this Photo by Naveen Annam , I guess you could say it is because life as an advocate is like one big tunnel each light is a step you have to take just to source and sort the things you need for the people you support, Sometimes its like one long huge never ending tunnel. Just when you reach that very first stepping stone your list gets piled with more paperwork, calls , appointments. many times it is baby steps forward and big leaps back to the beginning step again.

Ultimately decisions are really out of our hands and are in the hands of politicians Really having a grasp and understanding of what is needed to support the most vulnerable people of our country , everything from money to education, disability laws, inclusion, There are many things they get just so wrong and much has to be done to affect change right at the very top.

I definitely sign a lot of petitions for change in the disability, Education and family sector. It is hugely important as an advocate to actively put our selves out their it is our families we fight for.

Well we had Jake’s EHCP annual review different this year due to covid, and all done via phone call and email, it was positive, I mean we agreed his EHCP needs to be maintained a few minor things taken off more things added really for Jakes post 16 education, just checked it over tonight for final check before school sends it off. I am thankful that is now out of the way for another year.

Niki’s UC claim is still a mine filled but we heard today, that she has a good case and it will be sent back to decision makers, You know if I had none this was going to be a big challenge I would of brought it up and had it added to Niki’s EHCP I mean why it isn’t part of the post 16 plan for our kids with EHCP is beyond me. Maybe the disability groups, solicitors, support services and even the EHCP people and politicians should maybe have a chat about this, I mean covid has showed us just how vulnerable families are with out proper support and how it has a major impact on families.

Niki’s Laptop is broke and as soon as her Uc is sorted thats the first thing we are going out to get for her, in the mean time her college has kindly lent her one so she can do her course work, so thankfull to them for that, they are also looking into whether she can use her walking stick at the college I asked them to look into it again as it really helps her for her hips and knees.

So many families are struggling without support that is vital for them. It really gives me writers block having to deal with some of these things, this year especially I haven’t written my blog as much, not because I haven’t got lots to write about their is always lots to share but sometimes it all gets muddled. I love to look at the bright side of things optimistically and write more about the positive side of our family but we go through an awful lot I don’t write about. I don’t want people to think our lives are perfect, easy and unaffected like other sen families because thats not the case. some days are better than others we are more able to cope with the tougher days together in our own way.

Jake has started new medicines for his migraines , and this elimination diet is causing him anxiety, the next few weeks we also have mock exams for him so, think thats going to be take one day at a time but like all kids that have to go through thier Gcse’s this year and next year they really have lots so much time in their education. That it most definatly will be a challenge for them and the schools to deal with, add to that disabilities and anxieties and it won’t be easy.

Thats the tough bit over with now to the bit I love the most, the fun stuff.

Hayley’s Birthday

Niki helped with setting up the decorations for Hayley’s surprize dinner, and helped making the Cake and poster, Yes Mickey and Minnie Mouse themed Hayleys obsession and special intrest.

While Hayley went on walk on her birthday morning with day center staff i had the task of blowing up ballons and finnishing off preperations and going out to get her some pressies.

And a giant Minnie Mouse ballon.

My hubby helped Prepare the dinner, keeping hayley out of our kitchen when she got back from the walk was challenging, we got dad to come over for dinner too,she was un aware as i told her dad couldn’t come because of covid rules the shocked look on her face said it all the surprise made her day. Dad is part of our bubble and thier were only six of us thier and Niki and Jake didn’t get to close too him, maintained thier distance.

My kids are autistic so socially distancing is not an issue for them they do that anyway.

Hayley got new clothes From mum and dad she loved them, Mum lives in another area so could not be with us and she is also extremely medically vunerable to covid so is still in issolation. But with Nikis help we got her on face time so she could be a part of the surprise and watch hayley do her Cake and open herf presents , we really wanted her to feel like she was with us.

Hayley Loved her cake, and birthday dinner she squealed several times her face when she got another Elf for her collection.

She called her Hayley Elf .She left with dad about 7.30 to walk home with him. so a very successful and happy 49TH birthday for her.

Going to have to write the next part of blog tomorrow as its late here have to be up for school run and work tomorrow.

Good Night , lots of Love faye xxx

#work #Weekend #caring #emotions

Hi , hope your weekend has been relaxing, mine really has.

Before I get on to talking about the weekend Fridays double shift was so much fun, Hayley in the day time and the kids for the night yes plans had to be adapted because normally I would have tom but he had to go to hospital with his mum for the evening. Because his SATs dropped but he is ok though and was sent home later that night. His sisters stayed with me and we had super fun together.

Hayley

We had a shopping and creative arts day, as well as music, and online learning.

Shopping at the Local Hobby craft together for supply’s , Hayley went all Halloween style given this is the month where many peoples creativity comes out . Orange, greens, purples and black are the colours Hayley choose. we made a selfie frame together Hayley choose what to put and where to put it on the frame.

We still have some of the things to do next week after her birthday on Tuesday.

Face mask and hand , I wonder how she will decorate these.

Hayley loves art , she definitely likes routine and this has become a huge part of our routine while the day center is closed.

She did and awesome Job.

Even The elves got into the frame.

Hayley choose a bit of Elvis while we worked, you know its funny but Hayley likes things the same all the time but through covid even though she goes back to her specific songs, Her love of music and memory for words is growing, I have loved introducing her to old style blues, R&b ,opera, country, fast upbeat songs and slow emotional ones. It is that little bit of recognition first the eye brow raises then the corner of her mouth then she stops what she is doing for awhile, if it is really upbeat she will get up and dance, it really makes her laugh to do that, she gets others joining in to. There are also times she is engrossed in her colour by numbers on her tablet and with out knowing it she is singing along.

Musicals remind her of her drama club, plus My Niki plays them a lot so it is something she likes listening to with Niki.

Tom-Holly and Ellie

So the original plan was for me to have all three of them so Mum and dad could spend some time together. I was due to start work with them at 7pm after I finished with Hayley, if your a special needs parent you know that plans can change unexpectedly and you have to get your little one to hospital for check up because of their complex needs, I got a call just after half 4 the district nurse had been out to see Tom and she thought it was best he get checked over by the hospital. thankfully my kids had eaten and my hubby was here.

I got to their house, to pick girls up popped into see Tom couldn’t believe his excited little squeal when he saw me bless his heart, had to leave the room while nurse was changing his peg, so he wasn’t too excited.

Tom’s Mum and dad had to take him to hospital, and the girls dropped Hayley off with me and then we came back to my house.

Ellie wanted too cook her and Holly chicken and mushroom soup, she did it so well, holly wanted to set the table we lit candles and she put some rose petals and hearts, she also wanted to use my Golden glasses like a little sister celebration.

Sibling bonds are so important in a special needs family, because they have to watch out for each other a lot more then children who don’t have a special needs sibling. It can sometimes be so hard for them. their is always so much to consider for days out together, even just a simple walk can be a military operation and can be stressful for everyone, just because of basic things like changing facilities, food, who goes on what ride or who waits with Tom. Because of Toms disabilities their is just so much he cannot do but would love to, you see it in his eyes.

we had fun movie night Niki and Jake loved spending time with them as much as they enjoyed Niki and Jake.

We talked a lot to about Tom and we had fun they were very happy when they knew he was going home from the hospital.

You know I got all the elves out for Holly once I set up her bed, they are our go to place to get people relaxed happy and to talk about worries.

As soon as holly saw them she dived right in and then jumped into my arms for a big hug, she told me she couldn’t find her Emo book so we got a spare one out and both signed it she said she will put it on her shelf with her football trophies. she wanted a picture buried under the elves with her book.

My favorite photo’s , Holly then git the books and note pads and began writing her own story, about a unicorn bless her I told her I would help her publish he stories she can write little ones and we could put them into a book. She has a such an amazing imagination she is also very fond of my Emo he is such a unique Elf. it was amazing having the kids at mine again.

They Choose Scooby doo 2 to watch and we had milk and biscuits, they did take a while to sleep but once off slept the whole night.

The morning was super fun baths and getting everyone up and dressed.

Mums kitchen was very busy, orders were coming in one after another Holly and Ellie wanted toast first then bacon sandwich, Niki and her dad opted for boiled egg and soldiers, and finally Jake come down Mum can i make Pancakes, some wanted milk some wanted water, some wanted tea and yes mum and dad Needed that morning hit of caffeine. The room was filled with laughter and giggles till suddenly everyone disappeared out the room and left me with the washing up. Got to love it when they do they thank goodness for the dishwasher, yes I know its the hight of laziness but I couldn’t live without it, life gets so busy it takes some of the work off my hands, plus the majority of the time my hubby loads the dishwasher as I don’t do it the way he likes, but having seen posts about that before i Know its not only my hubby’s pet hate, how dishwasher is loaded.

The children’s Mum and dad come to get them at 11 and that was work over for another week. Me I got the whole weekend off. We finished the shift with lots of laughter.

I had a rush of energy so took Niki and Jake to Town, They spotted the Christmas shop before me, they Just said go on mum get it over with, lol they know i get inspired and distracted if I see anything Christmas so they wanted to get it out the way first.

How can I not feel inspired it is what started the whole Emo journey, and how I became an Author, one Elf with the cutest smile capturing my eye one November day and I was lost in this Happy place, it is a bit like that Gloria Estefan song I wanna see Christmas through your Eyes.

Here is the link if you haven’t heard it before.

You know she Wrote this song for her child.

The words so meaningful to our family too, more so since I wrote the book at Christmas 2016, I was listening to this song as I wrote every night.

Christmas 2016 was just after my kids diagnosis of them being on the autistic spectrum and we had been through such an ordeal together it really did bring fun back to our family and took us back to a time before all the stressful process.

We had new family members, and one huge family gathering, it was beautiful all the children together, food, music, games laughter. Missing them all now since we are not allowed to see each other, just makes me glad I captured it all then. I spent the rest of the day Saturday napping and snuggling with Niki and Jake joined us after a while too. today has been pretty much the same just lounging around, little bits of pottering around preparing for the week but just simply peaceful.

Well that’s it for tonight , Tomorrows a new week back to work and school. and so it all begins again.

Goodnight sleep well much love Faye xxx

#Emotions #caring #family #exams #childrensbook #Christmas #elves #autism #anxiety #mentalhealth #Health #Bookmarketing #EmoTheEmotionalElf

Hi everyone, hope your week is going well.

Why did I pick this photo for my blog well because first its stunning and secondly it shows this long corridor Life is sometimes like a corridor it can go in a straight line to where you want to be or it can twist and t urn along the way. or have many doors which takes you to different place. A different perspectective. It can make you view things through others eyes.

Caring no 2 days are the same some are easy some are harder some are filled with laughter and some with tears but they are always filled with love and care. Writing too its like its all planned out in your head before you begin then you stop start get distracted go down a different route before you remember what you wanted to write in the first place.

Work with kids last Friday

Masked up this time as little Tom just came out of hospital, the little sweet heart was in for a few days chest infection again. Had to go through a covid test but thankfully it was again negative. Because of Toms disability he gets them quite a lot he can’t cough enough to bring it off his chest, his SATs drop low and temp always goes up. This time he needed a little help with oxygen and some suction to help clear his mouth. he had antibiotics and a Nebulizer too. He is the bravest young man even when he is uncomfortable.

You know it is a very hard time for everyone but parents or families with complicated health issues and disabilities, it is very intense that protective instinct to keep them safe.

Toms such a happy chappy, always smiling his laugh melts your heart he is so loving and cheeky and very determined.

Holly she has bounds of energy very in tune with her feelings, wise beyond her years. not afraid too express her feelings. she has this creative imagination and her facial expressions show her feelings well.

Ellie and Dylan did their own thing Dylan wanted to watch a movie and Ellie wanted to do her own thing but popped in to the room from time to time. The dogs even were in their own favorite spot.

The video of us having fun .

It was a great night at work. finished a little earlier because Toms dad needed me to drop him at hospital the next morning.

This blog has been such I work in progress, I kept meaning to finish it but have just laid down after work to tired to write. lost a little of my creativity and flow.

But This evening i am full of energy and back in the writing mindset.

Hayley

Hayley is such a joy to work with she is so Funny, doing videos with her has been so funny, just to see her confidence and personality grow more and more every day is a true blessing. together we dances do creative arts, learn all kinds of new things , experience all things new to her whether its trying new foods, doing something new like using a washing machine with help, writing a new letter, or learning new technology. She is very empowering to me too always telling people proudly I am an author and about my book. Our videos are like a pantomime sometimes, and I never edit Hayley she is just perfect, and sometimes that authentic thing about Hayley is she never thinks or worries about what others think of her she speaks her mind.

Sometimes i think that a good thing you never have to know where you stand with her if she doesn’t like something she tells you , if she loves something she says it loud and proudly.

Right now she is working hard on losing some weight, she said “I am so proud of me. I love myself, I am awesome” maybe we should all take a leaf out of her book. she has so much self confidence. She is always willing to try.

What else can I say, except I am going to make sure she has a beautiful birthday next week, I cant believe she will be 49 Years old, we are having to do this birthday without Mum being here because its to much of a risk for her. But dads coming over with her for a surprise birthday dinner its also good I still got lots of decorations. and I am going to find her a Mickey mouse ballon, in fact maybe I will do a Mickey Mouse dinner party for her and a Mickey Mouse cake. I just by writing this have all sorts of ideas now how to make it special. Can’t wait to blog about her birthday now.

Niki , Jake, Josh

My kiddo’s Niki has settled back into college very well, we are going to finally be painting her room maybe next week its going to be a work in progress just because of her studies and we have 2 days a week she is out for the whole day, we want her not to have to stress when she is studying.

She is also developing her own sense of identity and things with her tom are still great, she is learning lots and smiling a lot more lately.

My high light of the day is hearing from my mum and my Josh I miss them so very much.

My Josh had his very first driving lesson we were talking about it on the phone today, I love our chats and catch ups I know I don’t have to worry about my Josh he all grown up but I still do a mums prerogative to do that.

Jake has also settled back into school well, now the its lots of mock tests and study coming up. He is saying it is stressing him a little and sometimes he puts a lot of pressure on himself, but I think its amazing he is now just doing his tests and his grades are changing just by being able to do them. yes anxiety has being really difficult. I actually think he is more resilient them he gives himself credit for.

We had Jakes EHCP meeting the other day and it is the first extremely positive one getting them them small changes fine tuned setting up provisions for after he finishes his GCSE’S.

Making sure he has the right exam provisions , being prepared if he has heightened anxiety as the time nears to them, having his recent medical report added. So their is an understanding of his medical things and if they may bring complications.

You know I spent ages writing the Parent’s feed back form and went to save it and lost it, much has changed over the years, before it would of left me full of anxiety and stress having to redo it this time instead of panicking try to remember what I wrote , I switched off the computer and did not go back on till the morning got it finished and sent about a minute before the meeting, do you no what it was the best decision I ever made. I was able to have everything fresh in my mind and was able to speak calmly without stuttering. people don’t take you serious if you stutter or talk real fast. It is something I am working hard on.

Weeks of school Return to school runs, cooking cleaning and working.

Lots of music dancing and goofing around.

This is my life as busy and stressful as it can be sometimes it’s also amazing uplifting and real as it gets.

Book Marketing

Gosh I got to find a way to do this better , I do believe in my book as much as I believe in the kids and those I work for. I really got to try hard to get some more reviews and reach more people I have done the social media side of things , constantly build all my pages used every bit of advise. spoke to I don’t know how many other authors marketers joined writing groups engaged in others post shared other work. I am not giving up on it. and it is sometimes a little frustrating I mean with things not open like they used to be the ability to do book signings is some what lax.

Would the next step be running a questions and answering author day on my author page be the next step. My only worry about that is whether people will sign up to it or join and really be interested in the book or just waste my valuable time? My time is so limited I have to factor rest in somewhere. Do any of you authors who also blog contact radios or news outlets yourself or shops direct? This is my thoughts i am leaving you with for now. I have much to think about over the next few weeks. Once Halloween is over Jake has his mock exams then I can really focus on book sales.

Paperback

Digital Copy

https://www.kobo.com/gb/en/ebook/emo-the-emotional-elf

Have a beautiful evening Much love, Stay safe Faye xxx