Yesterday’s trip

It started so early Jake set his alarm for 5am we were going to leave for the journey to Birmingham comic com convention.

The kids woke up early I tried to ignore the loud buzzing and flashing red light which came from Jake’s Spiderman alarm plus the loud banging of the doors and cupboards as the kids were getting ready.😁

Sometimes they have no concept of time, the fact our house joins onto our neighbours and they want a weekend sleep in. On a plus note they didn’t have to be repeatedly called which for me happens every school day. Now I know just how annoying it must be to them 😂.

We are always over prepared our own packed lunches not only saves the meltdowns over what foods when eating out but saves money too.

The first aid kits stocked with all sorts of plasters bandages, and things incase of emergency. Pain meds , medicines that are now part of Niki’s daily routine.

Water bottles many , changes of clothes, the dress up outfits. Made to the best of our ability, have to be very specific , get it wrong and anxiety will be high.

The oil,water,tyres, checked and a full tank of petrol all done the day before to insure a smooth as possible journey. I am hoping the kids cope in the car for such a long drive and to be honest they were angles and were even helping with reading the road signs and Sat Nav.

I am so glad I paid for priority parking it was so close to the event entrance that when I need Jake to get some air when he was getting over anxious with his costume and the crowds. We just went and sat in the car for a while had a drink and some food let him chill before returning.

Niki had Tom so they independantly

Went round the event and messaged and met us a certain spots to just say I am cool, it was after all her birthday choise.

It was a lovely day out and getting to show Niki and Jake where Thier big brother lived was great aswell all meeting up to go to together.

Here are some pics from the event

Even superman has to get money from cash point.

Fabulous memories made, Jake even one a computer competition, he one a Minecraft sword. 😁

It also made him feel great when others asked for a picture with him he loves Tokyo Ghoul ,infact he has just finished reading the first books.

We ended up leaving here at 6.20am and arriving at my oldest son’s in Birmingham about 9.40 with only short stops on the way.

Journey home was great aswell leaving at about 6pm and arriving at 9.30 we stopped at the first service station everyone was hungry but no Mc D’s so had to drive about 100 miles before we stopped to eat. Couldn’t wait to get home for food. Hungry young people’s .

We were all so tired from the day we crashed as soon as we got home, I said to Jake turn alarm off we can sleep in, it’s Sunday and no school tommorrow.

But this morning 8am that same loud buzzing and bright flashing red light woke me up. Didn’t wake anyone else just me. I can never get back to sleep once I am awake doesn’t matter what time. I guess I should look at it positively as I was awake all my washing and ironing has been completed another tick off the list of things to do, even managed to dry to loads on the line out side instead of using all the electrical in one go. Yay me 😀

Sunday Home work Grr hegerty maths

Anxiety causing, Jake has been trying bless him, I tried and let me say my mind went mush how these kids cope with these online maths lessons 😰

One phone call to big brother and Jake understood it. Me however am not a fan of online homework apps don’t always work or the way they put the questions makes it more difficult.

It isn’t the first time Jake has had trouble trying to use this app.

He much prefers the old sheet sent home style finds it easy to do for some reason he has spoken to his teacher explaining his difficulty with it and also we have written letters aswell.

I was speaking to another mum at the school the other day who son is also autistic and has alot of anxiety with the online homework app. So it isn’t only Jake. That it causes anxiety for.

Maths used to be something he enjoyed from a young age his favorite subject. But now the cause of a lot of his anxiety.

Back to discuss it with his maths teacher to see if we can find a better solution for Jake’s sake , it is hard for him to face the teacher the next day if he doesn’t understand something he feels very embarrassed by it.

Any way that’s all for today

Speak soon

All my love Faye 💗😁

Niki’s birthday was a little difficult, I got myself in a bit of a state, the thing is the last couple of months have been really full on. Lots more hospitals doctors bills.

For ever good thing that happens something pops up to throw me off course.

It is what it is though her presents were late , seeing her sit there with just a couple of token presents and her presents from Jake made me feel so guilty.

Thankfully I managed to put a smile on face for the kids.

Must apologise to my parents and hubby and oldest for venting to them.

It’s understandable that sometimes I am a little under prepared. Just not like this year.

It is why I have made a tough decision to put the release of book off temporarily till I have sorted the important things out first.

I was ready and excited , and slowly getting through list of things , having that overwhelming feeling again is a bit of a wake up call to take a step back and revaluate everything.

The book was writing to take anxiety away and bring some sunlight and laughter back to our family, and it worked the book is evidence of that.

Special times shared with our family to strengthen bonds and get people talking again.

But recently the stress it has caused since the publishers went bust and siezed trading, I think everyone picks up on the tension I feel. That’s not a good thing in an autistic family it’s unsettling and that is just not what I want.

I am not saying it’s going to be easy to put it to one side because it isn’t it’s something I don’t want to do because it helped me smile, that is truly what I beileve made the difference.

The author event is still going ahead and I am going to be speaking and hopefully selling some books there then maybe I will have some reviews by the time I am ready and have more time on my hands. Hopefully also a little bit of savings to carry it forward and give it my all.

That’s all I have for today I have a long drive tomorrow.

We are off to comic con I was silently hoping I could get my hubby to come but it’s a big no-no for this, but he did help make the tenticals for Jake’s outfit , plus I have a day with Niki ,Jake ,Tom and my Josh.

Good night all

Love Faye xx

Hi all how are you Today.

Busy day

Been so busy, preparing for Niki’s 19 😱😱😰 yes I am in shock my girl is a woman growing in confidence, independant, fiesty, only occasionally temprmental, smart and beautiful.

She grow up before our eyes seems like only yesterday she was celebrating her proms and 16th bit three years have passed since we started sharing our families story.

We have packed some pretty amazing things into those three years as well.

I haven’t got much to say tonight as I. So tired. Not long finnished setting up for her morning birthday surprise.

Her present main present hasn’t arrived yet so she has a few small token ones to open in the morning.

The worse thing I think is when your kids hit them double digits the presents they want change and what once filled your whole table is either in envilopes or they are tiny.

I hope she isn’t dissappointed had to let her in on the fact there will be more to come as the week goes on.

So for now I will share some of my favorite moments of my Niki ,

Goodnight all sleep peacefully.

Much love Faye XX 😀😀❤️

Hi all how is your day today,?

Today was the day Tim arrived Niki was bubbling with excitement and nerves, “what if he don’t like me” you know simple reminders like he has travelled all day , a long journey to visit you you bet he still likes you.😀

These are slightly hidden anxieties Niki has another one this evening when I walked ahead to car it was a little dark but I wasn’t far in front she ran and jumped in the car “what if someone kidnapped me” I am her it would never happen. She is very head strong an independant but still these little things worry her still. Maybe it’s because her eyesight or just she doesn’t like the dark I am not sure could even be a combination of both.

It happened at the shop the other day when I went in to get something for dinner she waited in the car, right opposite the shop I made the mistake of sitting down while I waited I could see her she couldn’t see me.

When I got back in the car she said I was about to phone dad to come I couldn’t see you. It had suddenly gone a little darker outside but was only half 4in the evening.

She will get a bus home in summer but come winter mum can you pick me up it’s dark and I’m cold.❤️

Others don’t neccasserily see this and even though she is 19 on Wednesday.

We are not fully over some of these anxieties.

Still it was such a lovely sight when thier eyes met across the crowded airport, the smile that suddenly appeared Niki’s cheeks Turing a slight shade of plum.

I was trying to think what to get Tom for his birthday as he not long turned 21. Very tricky but the ticket for the comic con and then something I concider special a key to our home only my hubby myself and our children have one, because it’s a trust thing. Giving him trust to our home and that we trust him with our girl. He earned it easily from the moment we met him. He fitted in to our kind of wacky family.butost importantly he has brought my daughter out of her shell and installed a confidence In her the was lacking during her really tough school years.

She really is blossoming into a beautiful young adult.

Jake is still having pains in his chest and getting breathless but is trying to work through it with a pain killer to take the edge off pain so he can cope at school think it isn’t going to go away that quick.

He is happy that Tom is here to still hovering around close to his sister, spent the evening in his room, think he just wants to be the protective brother. There bond is strengthening to where it was before diagnosis,they are more aware of what triggers each other now so back down before it gets to far. That takes time, though and a heck of alot of patience.👌🏻😀

The book

Moved even further down the list of re-publishing should not be very long now, but I have to get places to remove the last edition first because it is unavailable because publishers are not allowed to trade now they have liquidated. I have a deeper understanding now how much work it actually takes from all sides to publish a book. I really want to make sure I don’t all the eyes and cross all the t’ s this time before it goes live.

I took a short course on self publishing today and aced it which means my brain is actually retaining the info it needs even if I think it has, plus it doesn’t hurt to get someone you trust to check over things, my hubby did this for me today, he is so intelligent anyway, so I value his input alot.

It will be a little nerve racking to see the book dissapear even if it is for. Short while.

Tom and Mum

My lovely mum is down as well she is looking after Holly and Ellie, while little Tom has his op , he settled in well at the hospital and tommorrow is the op day, going to be hard not to thinking about him being on the operating table. Realy not nice for his mum or dad to considering what caused his disability in the first place.

The adaptions to thier home so it meets Tom’s needs are almost complete and other than he will be able to sit at the kitchen table or counter and join in with the others.

Amy way that’s all for tonight.

Many thanks Faye

Tonight was so beautiful to see the moon In all its Glory, the way the clouds lit up to see a glimpse of what it was trying to hide . The picture unfortunately doesn’t show the whole view, the white glow broke up by the grey shadows which looked like a shocked face , trying to say oh.

A halo surrounding it, looking so close but so far at the same time.

I was glad to be able to share that beautiful sight with my hubby, him taking a photo for me.

Utter stillness In the air, a silence except for the sound of the phone’s camera clicking noise as I gazed at the screen on the phone, “there” I said.

I have watched many programs that have sharper clearer pictures that show the details our photo doesn’t show but they never can compete with seeing it first hand with your own eyes.

I have learnt to appreciate details around me whether it’s the moon a slug climbing up our recycle bin.

The first buds of flowers grown with care.

The first eruption of vegetables my hubby planted in our small vegetable patch.

The way he painted the play house. I often wonder why I forgot to notice these little things for so long, and how other things took more control over my thoughts.

Buy in all fairness our life has been so hectic over the years, taking one day at a time was all I could really do.

No 2 days the same , different situations, and demands. Life is sometimes not our own to just breath, to be free of outside Influence and constraints.

Thier are so many things to regret not doing in the past, that maybe sometimes now we feel maybe to late Todo but reality is that anything can change at a moment’s notice.

The boundaries are life we put Thier ourselves sometimes to protect our weary souls, the essence of who we were, who we are now right at this moment. Something silently in the back ground saying do reach to far don’t go for different or beileve in the new, we crave stability and surface normality.

What is out there is unknown territory could be bad but even more importantly could be amazing.

I am Open minded about things I can’t see I have a sense that gets really heightened at many different times,

Is it intuition or deja vu sorry if some things are still spelt wrong. I sometimes get the feeling I have heard a conversation word for word before not just the conversation but the visual that goes with even the tiny little details.

It happens more then I would like to say, maybe I just live In a very repetitive world. I have a Sence just before the phone rings of who it will be and if it is something good or not.

I feel it sometimes I say to my hubby I don’t want to answer the phone but 9 times out of ten I will, and it is confirmed.

How can one glimpse of the moon bring these thought into my head and a tingling in my heart.

maybe it is simple just 2 words. Seperated but intertwined at the same time. (LOVE, HIM)

My thoughts are there a lot. They don’t diminish as we grow infact it seems to draw me closer and deeper each day.

I am such a soppy person, but it makes me free, freedom to express self without constraint, Without fear,

Very much like before I was married to him. What drew me to him I’m the very beginning.

Hi all how is your Sunday going ?

I am so relaxed today got to spend one on one time with Jake we went to get birthday presents for Niki he chose such perfect ones for her, he even helped me choose an outfit for the author event, which was sweet.

It was funny when he said not that one mum he said mum listen you have your chooses I am here to give you dad’s perspective on what he would think looks nice on you, I love that. Sometimes I am unsure what is good or not. I tried it on when I got home to show the all and as my hubby turned round Jake have me a big thumbs up with that cheeky smile.

I kind of like plain colours, Jake likes flowers on dresses but I choose a love pink. I am not really big on wearing jewelry other than my rings my hubby. Brought but got a little bit of bling to just cover the colour bone still a little to thin there for my liking .

The best thing is I have now got up to a healthy weight 8st 9 it was hard to achieve and took 2 years. But better than 6st just really starting to notice the difference over the last couple of weeks.

We also spent some time in the local book shop so Jake can choose some more books, was a hard choise for h so we stopped in Thier delightful little coffee shop and discussed it a little more.

With it being St Patrick’s Day today and having Irish family members Jake choose some new props for the elves.

We also got the outfit for Jake to wear to comic con next weekend. Have to add the finishing touches .my self as we couldn’t order the official one in time.

This week ahead

Our Niki’s birthday week, can’t believe another year has passed do quickly 19 wow my little spitfire is all grown up, tomorrow her boyfriend Tom is arriving from Holland she is so excited he will be here this year to celebrate with her and we are all looking forward to having him stay again, he is an important part of our Niki’s life he treats her well and they have such a beautiful friendship as well as dating.

My husband is my best friend too, it’s great to have that person who is totally honest with you good or bad doesn’t lie. Straight up and direct this is important for strengthening things.

Any way wishing you a beautiful Sunday much love Faye xxx

Hi all hope your weekend has started off great❤️😀

Red Nose Day , it’s a funny one this year something set up so positive to help others yet not advertised like it normally would be due to Brexit dominating the news or the papers.

Many schools who used participate with the kids getting excited to dress up and take part in helping to raise money for really important causes.

Such a shame I hope they raised as much as they normally would if not more, We took part in our own little way.

Then I though it was time to sort my hair out back to natural colour less maintenance, always been difficult to go back dark because little Jake always new me to have blond hair, he used to say “mum I won’t be able to fined you in the playground”😀 bless him but he likes it so it’s all good.

Night shift

Work last night was super fun, the kids were AWSOME , seeing little Tom open his new books and reading them to him was the best thing ever he loved them all we got through 3 last night before he went into a deep sleep.

Holly and Ellie were so relaxed and enjoyed the selfies they like the filters.

We got up to all sorts of mischief

The other side not so obvious of work☺️

I am just one of Tom’s carers and it isn’t all just fun little Tom has cerebral palsy in four limbs ,he also has a little peg in his tummy for medicines and nourishment. This young man has had Botox in his legs, and this week will have an Operation to lengthen the ligaments in his legs, it round the clock care. He has epilepsy and has been having seizures. It’s physio and always having to upgrade his equiptment so it fits his needs.

It’s learning new technology so he can communicate and live as normal life as possible. It is hospital appointments and unexpected stays there.

But he has this truly marvolus happy personality that melts your heart.

His smile just is warm and giving.

Home

This morning we finished reading all the new books. He was laughing so much.

Holly was already for football this morning naturally gifted player and really dedicated to it too

This morning on returning home to my own little family the house was so quite the kids and hubby fast asleep,

I used my time wisely before they woke and brought the tickets for comic con next weekend we are all so excited, obviously there is a little of extra we have to do for planning this year because of the long journey a d the fact that it is a busy place to go due to the kids anxiety and sensory stuff But I already planned a head and pre-booked a parking space really close. It is a huge must for us as they can tired irritable at the end of the day and it will be a long journey home too. They are so much older now and I am Prepared plus my oldest son will be there too as it is on near him 😀😀

PPI

I have put in my forms for this through I company and it it not really a pleasant experience , for a few reasons they ask you to remember details from many years ago I a can’t even remember where I put keys sometimes, and I am not the best at talking on the phone it gives anxiety I get so flustered I can’t get my words out. Plus they speak fast and read from a list it feels like you are being interigated I anwsered the to the best of my knowledge. Let me tell you they are as pushy as those selling the policies. Feel Pressured alot same as when I took it out. Sometimes I just need a little extra time to process facts. Also my brain likes to lock away things I find unpleasant , just letting me remember the good, these last few years so much information has been given to me I haven’t had time to store it in an organised way.

I just wanted to have a peaceful Saturday.👎😡

Anyway that’s all really for today

Have a good one I Going to chill now