Emo The Emotional Elf #author #christmas #book #elves #emotions #selfhelp #children #autism #anxiety #mentalhealth

Hi all how has your day been?

Falling over in public 😀😱

Yes that was me today, I was food shopping with Hayley and Niki when I just passed this fridge section, fell on me my knee, Niki was looking for where I went , “hello I am down here”

My knee wasn’t to badly hurt but it made my hip hurt for a while. It is better this evening though.

We finished the shopping Niki said mum I shouldn’t laugh but it was like one of the cartoon moments when you slip on a banana.

Got home with about 20 minutes to spare just enough time to get Jake to kungfu school, he did great today.

After I picked my dad up from shopping and dropped him and Hayley home. Before returning home to my house and getting cleaned up before work.

Got all the ironing done and everyone fed before the girls arrived for the night.

Fun night’s work

We had so much fun the girls spent some time with Niki and Jake tonight Holly and Niki making unicorn book marks out of hammer beads, while Ellie and I looked at my dresses in my wardrobe while having a chat about how she wants to choose things to wear that suit her. I got a little sense of her personal taste and have talked about what is good for her age and what is not so good. She is such a lovely girl and really pretty, and smart. I want others to treat her with respect value her for smile and brains and not how she looks.

Ellie

She came with makeup a little to heavy which she took off after mum and dad left. Then I talked to her about the right time to where different types, the really heavy stuff should be for party’s and if she must where some just some lighter almost not there colours, which a much more suitible for her age. To show her how those darker shades actually look I let her do my makeup how she would normally where it. Then we took pictures.

It was nice giving her one on one time, I think some time it is hard for her being an older sister to a child with disabilities and a younger sister she loves her brother and sisters alot.

She also loves her big sister next and misses her too.

That’s been my day, the girls are asleep Jake is in his room sleep I hope comes soon for him, and Niki is the same not asleep yet.

Me I can finally put my feet up for the night, and wait untill my kids sleep too.

Holly

Holly wants to have tracking tags put on the elves because she said Thier very special like me , how sweet is that, she was telling me all about school and that she is learning about Pompeii, and division witch she loves.

She talks about how she wants to play with some kids at school but they won’t play with her, and that her teachers are sorting it out for her.

Never underestimate the power of bringing toys into help kids talk about emotions it really does work, it doesn’t have to be Elves it could be something they are personally interested in.

Have a beautiful evening all.

All my love

Faye xxx

As you can see lots of fun,story time jokes, songs and long talks about all sorts of things.

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Emo the Emotional Elf #author #christmas #elves #emotions #autism #anxiety #mentalhealth

Hi all how has your day been?

Not much snow here at this present time, although a few small flurries.

Hayley and the appointment with her nurse.

Hayley had her yearly check up today when really well, we discussed her blood test results we will be having more done in middle of Feb, vitamin d , bone density because of the 2 broken wrists she had earlier in the year, and a check on her liver again Hayley doesn’t drink Amy alcohol because of her epilepsy meds. Blood pressure is good heart good.

Having Willi prader is hard for her to keep weight down because she gets hungry sometimes and if someone offers her food she will say yes she has put on a little weight, about 9 pounds, so we are going to re-work her set menus and when we have her review at day centre make sure she is not eating what she is not supost to eat.

I have had a good long chat to her about it and she is going to help with the menu, learn to say no to others when they offer, good in practise but not in reality because she can be sneaky with food. I thought she may have tried to sneak food this evening because she was making a cup of tea but for some reason had her bag with her not something she usually does.

Change for Hayley is hard and she can get very angry over food. Still she is noticing she has to make better choices.

She is learning to save some money at the moment. Which is good.

Jake’s birthday is on the 5th

Jake will be fourteen of the 5th of February , We got him presents sorted and I will be making his cake this weekend his theme he chose is marine biology so any thing to do with that.

His Like for all types of sea creatures started quite early but became his want as a future career when he was in year 6 at middle school.

He had a real lovely teacher, she sent him a letter introducing herself and told him a little bit about her favourite things she liked and that was sea life animal like Turtles.

So we went to see some and then did this whole project to carry in on the first day back, he loves doing creative projects. It was the first time a teacher understood his school anxiety.

She would also give him little writting projects to do, he used to leave little challenges for her to answer in his books.

That year Jake had a lot of school refusal and very bad sensory issues. It was one of his most difficult times.

How far he has come since then is so huge.

Niki voulenteering at her old school

This has boosted her confidence so much, she is able to connect well with the students because she has a deep understanding of what it is like to be them.

She has been getting us all to join in with her Tick Tocks videos she loves doing them to her surprise even her dad joined in. Made me smile so much.

Tommy

I love working with little Tom just like he likes coming to stay with me. Bless him he face timed me tonight and was so happy and he was laughing. I asked him if he missed Emo his little face lit up when I popped Emo’s face on the screen.

Tomorrow I am looking after his sister’s for the night so that means lots of fun.

The week is ending

It has been a long week with many appointments to get through. It gets a little tiring sometimes so I have a lot to do this weekend to get our home ready for Jake’s birthday his Nan is coming down for a couple of days weather permitting.

It will be great to spend time with mum again.

Book

I can’t remember if I spoke about the

again, but we spoke again yesterday to liquidators they are now saying the minors and digital version should be ready by next Friday, I am hoping they stick to thier word this time.

That’s all for tonight hope you have a peaceful rest and feel refreshed for the weekend.

It’s a month for birthday’s here

It is not only Jake’s , but my great nephew Little Pat and his big sister my great Neice Rose, they are the politest sweetest children ever. They are also very cute 😀💗

Many thanks

Faye xx

Emo the Emotional Elf #author #elves #christmas #book #emotions #anxiety #autism #mentalhealth

Hi all hope your day has been good.

Still no book news from liquidators 😞

I just want to really get on with it now, it has now been a few weeks since we had the meeting with them in which they promised to send a copy of the minutes of the meeting, and sort out the digital copy , an InDesign copy. Not to mention no feed back about the money we put a creditors claim in for, I haven’t even revieved the royalty payments for the books that have sold yet.

What the book has brought to my work!!

It has brought laughter, trying new things helping those I work with talk about thier feelings, a willingness to engadge with thier learning, and a want to learn more.

It has encouraged them to think about health and fitness. To smile so much more.

That is just those I work with.

My Family

my family have got so much more out of it, the wider family talk more about what has affected them, Huntington’s is no longer a taboo subject, like autism, anxiety, and mental health.

I mean I have been very vocal about all these topics for sometime now and if we didn’t have these things in our life the book may never of happened.

I like to think of my book as the most positive thing to come into our lives at our most difficult times.

That has set us on a more vibrant and positive journey, more able to cope with any more health issues we have to deal with along the way.

Working with Hayley

I have seen so much change in Hayley more so in the last couple of months.

I have definatley noticed a change for the best in her memory lately maybe now she is not so sad about the losses of friends and family it is easier for her, or maybe she see’s my Niki and Jake doing well with Thier learning she wants to try hard like they do she definatley looks up to them, and always wants to no how they are doing at school .

Hayley new a few numbers but was not able to say them in sequence so we have been learning her numbers with little jigsaws. A couple of weeks ago she could count up to 5, yesterday it was 10 and today it was 15.

Every time I got her to show the kids what she learnt she surprised me with a little more. By the end of the day up to 18 without any prompts.

The alphabet I think may take a lot of time but I won’t give up trying to teach her it, we have started reading to her just some of the books I used to read with Niki and Jake when they were little she joined in with me her pig and duck noises were brilliant.

Niki’s Feelings today

She is still processing the doctors information from yesterday, but was at star at having her blood tests done today, she has come so far in getting over her needle phobia now the anxiety is still there but she just gets on with it. We are taking it day by day. It is on her mind but she is focused on her school work and plans for her education and future. She has developed some lovely lasting friendships over the last 2 years, and has her third year anniversary of when her and Tom got together coming up. If I would of listened to all the advise I have been given over the last five years about her I would have been wrong.

Jake’s day at school

He spoke to and sorted out the issue with the boy from the other day, i am still going to keep a close eye on the situation to make sure it does get worse but I am truly happy to be led by what he wants and backing off so he learns more resilience to these things.

he is still earning lots of positive points at school, mainly for achievement and respect and perseverance, I am not surprised as this is my son and he always knows these are important things.

Homework again he has been working hard, we are learning that some times it is not the work he struggles with but the way in which it asks questions before he wouldn’t let us help him. But now we read it to him just a sightly different way and them he gets it much easier.

Hayley’s blood test results

Well the call from the doctors we have been waiting for all week came through and her liver function test have come back high again as it has for her last couple of tests, so she needs to have them taken again in the middle of February and if they come back high on the next test they will be looking at performing a scan. It could be to do with the medicines she is on for her epilepsy,

She still has her yearly check for her learning with the nurse on Friday plus her yearly review coming up at the day centre.

AS you can see there are many things being a carer for work and being a mother and carer for my kids, to do no 2 days are the same this is our life we are just all better at it now.

My hubby Nik

I am so thankful he is around and it was good to talk over whats happening with Niki’s health with him, because we do each have an opinion on these things he makes me look at things from different perspective, he points out things i may not think of and i point out things he may not know.

Oh and he scraped the ice off my car this morning, made the kids smile.

He also cooked dinner for us all as I was working with hayley and sorting the children. I am lucky to have him as a husband sure sometimes i could quite easily become frustrated with him, but then he does things that remind me why I truly love him so very much. we both like to prove we are right both stubborn have the same kind of sense of humour, each of us knows the other I think better than we know ourselves and both of us dont like to admit that. I think we challenge each other, I wouldn’t of liked to be with someone who agreed with everything I say and I love that he stands his ground with me I can be some what temperamental sometimes.

That is pretty much our day today, so good was some learning still to do on the medical front but as always, we are a family of get up and give it a go, never give up hope type of people.

much love

Faye xxx

Strike a Pose
lunch out

Emo the Emotional Elf , #author #emotions #elves #autism #anxiety #mentalhealth #pcso

Hi all, it has been one of them days you wish the news you got was good.

Niki had her appointment today and the diagnosis was confirmed pcso I think this is one I have been dreading the most, like many before the anticipation of noing but not officially not Infront of your eyes in black and white not words you can take back.

As a Mother and a female this is a hard thing to have to tell your 18 year daughter, how much it will affect her well we are doing everything we can to minimize the affect, and my daughter may be autistic but that doesn’t mean she doesn’t want children of her own one day, and is more than capable of being an awesome mum when the times right.

As if she hasn’t been through enough already, seeing her so upset really broke my heart noing I can’t control this diagnosis or take it away.

She is already making the changes to her diet and excersize’s every day, so this will hopefully keep her in the safe zone as far as weight goes, she came out of the doctors room ok, the doctor wants to check her adrenal function before starting treatment, we went to have it done and were told it can’t be done till the morning, she appeared on till then. Then the process of what the doctor had said set in, she was crying asking why her why does she have all these things, you know I am glad she was able to realease all that emotions, I have been waiting for it since we first got the news about the pcso diagnosis. The treatment they are talking about is the combined pill and Metformin. But before she can go on the combined pill because of a large family history of blood clots we have to make sure it is safe for her to use. I know my daughter is strong and can handle this but she is also a young who is autistic, who does also have tourettes, generalised anxiety and is prone to depression. Life seems some how very unfair to her.

If I could have it instead of her I would . But I can’t all I can do is talk openly and stand through this difficult time and make sure she has an informed and explained fully to her not to me , but to her everything she needs to know to a way she processes it.

Right now this is how I am dealing with by writting, I know a loss of a child and I know what it feels like as a woman when ferlity and having children comes into question. This is something the doctors didn’t go into today as they still have to rule a few other things out first.

Now is time for her to take her time to let it sink in and weight for results to come back, in her own time is the important thing now.

I told her never give up hope for everything she wants in life. Never tell yourself you can’t

Many thanks

Much love

Faye

This is our life and many of Niki’s diagnosis have been invisible till now.

Now they are not we can work with that.💗💗

Emo the Emotional Elf #author #emotions #elves #book #autism #anxiety #mentalhealth #schooldilemmahelp

Good evening all, how was the rest of your Monday.

School dilemma !!

So as you know from the last post I mentioned Jake’s school phoned saying he was complaining of tummy cramps well, on his part he managed the rest of the day, so that was a great thing he persevered through it.

My dilemma is as I was waiting in my usual spot just inside the main. Entrance where Jake expects to see me ,I noticed him moving towards his tutor when another student approached him to show him something on his phone they the. Walked away and he went into his class.

When the bell rang as soon as we got out of the school building, Jake said to me some boys had been saying that his friend had been saying things behind his back, Jake asked several times what but they waited to the end of the day to show him a conversation between his friend and a group of four other boys. The group of boys had a falling out over something silly and the boy who Jake normally gets on well with said ‘ stop being a Jake retard, spastic, disabled’ Of course Jake was confused as to why a friend would say this really offensive thing about him. I why the others who have been not so nice to other autistic students, I have been wondering if this is why his anxiety has been a little more over the last couple of weeks and why the return of the tummy cramps.

Getting to the dilemma do I as a parent go to school and speak to them to get them to monitor the situation, before it starts getting nasty again and have an impact on Jake’s learning because I am not happy that this goes unaddressed and have seen how quickly this turns from low level teasing to much more?

Why are his support workers not picking up on these things ? They know the support Jake needs is with feeling safe in school and making sure they pick up on these things that can easily exasperate his anxiety and have a huge impact on his ability to learn?

Also I don’t want the school to say here comes Jake’s mum complaining again.

Or do I let Jake speak to them and say it happens again he will report it.?

Do I quitely without Jake noing speak to the support workers to keep a close eye on things without mentioning it to Jake.

He Just wants to do his work and make some friends that are not crule.

Jake knows first hand that it starts with one person, then becomes a small group taking it in turns to say mean things. This is what caused his anxiety and school refusal as well as physical assults. In privious school and this school.

The subtle signs he has been showing that maybe something is going on again I pushed to one side but after today I don’t think it is something that should be ignored. 9×out of 10 when he does talk it gets worse .

So this is my dilemma,? If you have any tips please share by leaving a comment

Jake is so much stronger than he was but that is because the anxiety has been lessoned by not having to deal with pretty crule behaviour of others.

I have said I will let him speak to the not tomorrow and see of he can make him see what he said was not nice. But that I would speak to school of it happens again.

This is the very reason Jake does not have social media yet not because he is not a sensible young man but because of how others behave towards him.

Many thanks

Much love Faye

If you have been in a similar situation what would you have wanted your parents to do.

Emo the Emotional Elf #author #emotions #elves #christmas #book #autism #anxiety #mentalhealth

Good morning hope your weekend was lovely , ours was very quite and relaxing,

Jake

Jake was a star and got all his homework done by Saturday such a big improvement in his engagement to the homework process.

He does still have issues not with the work itself but with how the questions are asked, he sometimes says they make no sense.

There is a new school app we have all started using as teachers, parents and kids, I like it so far and so much easier to access then privous ones. The thing I like the most is the positive points system now instead of little or negative feed back Jake gets to see what positive point he has earned.

18 points for achievements, 11 for respect, 4 for persiverance a 2 for self confidence. Thinking about it like that and seeing no detentions or negative points is really good for building his self-esteem back to where it should be. This is all of the things he also learns at kung fu so, having that in his life has really helped as well both can lead to a different mindset.

Niki

Niki is doing well at college she has mocks at the moment for maths, and she is trying hard hopefully the exam anxiety won’t be to strong and knock her confidence. She also has her new specialist appointment at the hospital tomorrow.

Phone calls from school

We had a phone call this morning Jake has been complaining about his tummy again, it has been cramping on and off for a couple of weeks, I just think it is the same issues he always has with them. So just monitoring it at the moment, they wanted to know if Jake should come home, when these situation occured before I would rush and pic him up, but today I want him to persevere as long as possible.

He has been saying he is feeling more stressed then usual at school so maybe his anxiety is making it flare up again. I shall see but the chances are we will get another phone call to pick him up In an hour. I would be pretty surprised if we don’t.

Trying new foods

Every day we try to encourage Jake and Niki to try new foods Niki pretty much each well but as a vegatarian.

Jake’s still extremely selective but we have about 10 different things in a day. Yesterday we introduced Yorkshire pudding and corn on the cob , he did eat half the Yorkshire pudding. The sweetcorn is another thing entirely both these new things were on a separate plate, to his good foods and safe list, we could see he really did want to try but he kept staring and thinking of reason why he wouldn’t like it, this time and we have tried many times before he did sink his teeth in, it made him gag, then we new it was a no go it is the juices, smell and texture. His brain told him he wouldn’t like it then he thought it his body reacted then it again told him he can’t , eating disorders come in Many forms getting over them is not so easy. When it’s controlled by the mind.

Book

Still nothing to share yet still waiting to here back, Something, anything I can work with.

I am ready to go when I get it back, ready to do all the hard work,

In Getting it back out there like it was before the publishers liquidated it is horrible to see everywhere starting to say not available, I still remember the first Google search I did and it showed up on many website I will ,never forget it was 3am in the morning I was on a night shift all the children were asleep, I saw it and the first person I wanted to tell was my husband poor thing I woke him up squealing excitedly down the phone.

Still that is all for now.

Have a great Monday 😀💗

All my love

Faye xx

Emo The Emotional Elf #author #elves #emotions #anxiety #autism #mentalhealth

Hi all, how was your day today?

The reason I always start my messages the same. 😀

Most of my posts always start with saying good morning have a lovely day or something similar, there is a very logical and special meaning for it something which is carried into the book as well.

The reason having children who are autistic and who have anxiety, the morning routines of going to school in the past was like a battle field, that is definatley not an exagerration, I had one child who the school put on part timetable and those were days when she wasn’t officially or unofficially excluded and one child who was a school refuser.

Both were having bullying issues at at school which then came home with them and that stress and anxiety they took out on each other sometimes.

They were close but also were temperamental with each other, now I normally like to not talk about that trumatic time for us all because we have all come so far since then.

The reason I mentioning it now is because it was always so intense the school journey, it was never just drop them off and go home it became very complicated, the anger they felt made the anxiety and thought of school to much for them.

There is definatley a difference between Autistic meltdown and a kid having a temper tantrum.

It wasn’t like this when they were at first school but middle school and up wards, I guess that’s really where many kids become more socially aware of differences this is where our journey through diagnosis started and was an upsetting time for us all.

So the reason for the morning hello’s is very simple before it was a nobody speak to anyone situation no goodbyes, Now it is an important part of starting our day with a very positive routine it has taken a while to get here but we made it.

I will say good morning to them, they may grunt a reply till they are fully awake, I repeat it while getting them to hurry along and go through the morning routine,They used to be so stressed out they never said goodbye to there dad just slam the door shouting. Goodness no’s what our neighbours thought, we would get to the car and they would argue over who was having the front seat, because of course putting them together was a big no-no. I always would say to Niki “have a good day” she used to reply “i won’t” 9 times out of ten she would be right of course but that was our new life at that perticular time. Jake would cling and say please mummy I am not safe there, please don’t make me go.

Do you get a little glimpse of what it was like, fast forward to now when I say good morning they say it back even if they are still tired or grumpy, they say goodbye to there dad, Niki usually from the door Jake with a hug , the car journeys have become fun with laughter Jokes and sharing and taking turns who sits in the front.

I say have a good day as they get out and now they both say I will try, and there days have been so much better

The importance of something so simple can have an impact on the rest of the day, a I will try mindset better then I won’t, they certainly share there days with us, a break down of there whole school day if Jake comes out and says it’s been a bad day I ask him to tell me the good bits first then by the time he gets to the not so good bits he isn’t as stressed about them as he was earlier a way of leaving them feelings out of the car or our home.

Our home is so peaceful now. So that is the reason, it is so hard to explain what it was like then to now and all the stuff in-between and behind the scenes to keep things more of a positive outlook, but it is a lot harder then dealing with melt downs and refusal behaviour to communicate.

There are so many things we have done and tried and worked at different points, to cope or improve our days it wasn’t just me as a mum, it was my husband my oldest son , Niki and Jake themselves and obviously our nearest and dearest friends, families colleagues.

Without there support would we still be where we were, i honestly feel apart of something very special is about to occur in our lives we are building a support network of kind caring people around our little family and the results so far have been outstanding. Now it is our turn to give back and emotionally support others so kids get the help they need, parents feel empowered to to continue in meeting there children’s needs, and maybe use some of the things we share with thier families that have worked for us.

We know we are not alone, and neither do you have to be.

Many thanks

Much love Faye xxx

Have a beautiful weekend