Hi guys through out the writing and publishing my son who is autistic has been creating his own little Emo the Emotional Elf world, to become involved and spend more time with each other, i am entering his world and he is entering mine, we have built up this little connection that is mine and his,

Niki and me have the same connection through her special interests it is individual to their own little personalities  and likes it has brought us closer as a family to an understanding of each of our strengths we spur each other on and push each other out of comfort zones.

The video i am adding Jake created and put together all himself, it has taken many hours and months to put it all together well really he has been working on it since we started raising funds for the book, and it is with my families support and love we created the book.

Hope you Enjoy his little video

much love Faye xx

Getting the screen shot a bit of a pain with my phone kept switching off 😀😀 really wanted to shareas, a bit of as it gave me a bit of a boost,

Have a beautiful day

Faye xx

Hi all what a weekend this has been family reunions, my Niki away for the week with her boyfriend and his family, so super excited to have Niki home tommorrow and her Tom to stay with us.

Jake has really missed his big sister a lot he keeps asking if she is ok and saying how much he misses her.

They have Thier ups and downs with each other both being an annoying sibling sometimes but that is part of life and growing up. They always have each others back and always want to know each other is ok when their not together.

Got a first review on one of the places selling the book. Which was an AWSOME surprise and one that will forever be etched in my heart.

So Thanks Niko, it is very much appreciated and loved and means more than you will ever know ❤️

Jake has been invited to visit his Nanny’s house for a long weekend and is super excited about it. Nan has plans and places to show him.

This week me and Jake have been using this colour by number app on my phone taking it in turns to complete them a little on the addictive side though we love puzzles but have to complete it in one go or it drives us crazy.

My dad is going to come with me for a drive to Pick Niki up a bit of company and a shared journey gets him out for a while as well, Jake will be avidly waiting for his sister’s return.

Jake’s sleep pattern has been all over the place lately tonight he wanted his sleep meds which we haven’t used for a while maybe a few days just to get a bit of sleep will help.

He is still doing his excersize’s the physio set for him. So hopefully when we go back in a month there will be a marked improvement especially his back and legs.

The letter from the physio for blood tests should arrive at the doctor’s soon so that challenge can be faced and if he is infact vitamin d defeciant we can deal with it quickly.

Niki has been on her treatment for that and her folic acid treatment for nearly two months now she is due a blood test again when she gets back to see if that has improved.

So it is always all go in our house, work is great as well. Life is pretty relaxed at the moment a couple more weeks till I have to start getting ready for returns to school.

The thing I want most now is to just carry on the way things are moving one day at a time over coming challenges with the kids not for them but by Thier side, and even if them challenges don’t happen one day we try again the next and the next. We always get Thier in the end even if it takes a few twists and turns or ups and downs.

It’s good to just write and say what you feel at the time it certainly helps me a lot.

We watched the movie Ready player one was kind of awesome we all enjoyed it a lot we enjoyed wrestling for the pringle pot and the best part of the couch you know the bit that dips down where we all fight to sit as it is perfectly sculptured to how we want it. Their was no phones just us and a great movie.

Such a fantastic way to be on a weekend, before busy scedual seemed to see our weekend over taken with catching up with chores we were to busy to do in the week, now we try to do a bit each day so weekends we can relax more.

We have been watching some comedians, listening to music reading just generally so much more chilled .

Any way that’s all for today I have to travel tommorrow so should just try to sleep hopefully it will happen quickly now I have cleared my brain for the night.❤️

All my best wishes to the other bloggers

Authors, friends and family,and connections

Faye xx

Hi all hope your day today has been a good one, ours not so good very challenging with Jake`s hospital appointment today.

It seems that we still get passed around and very little support when it comes to doctors some appointments better than others, part of our journey is not only about the autism and anxiety, but other underlining issues that can be very debilitating to my kids.

Jake has been seeing a heart specialist for a while now  and although it is nothing life threatening it still has a major impact on his life, so a few months ago after another visit to the doctor, they thought the pains in his chest and arm were not linked to his palpitations but to his muscles so sent us to physio but still keeping a watch on his fast heartbeats. so Jake started his physio about a month ago. and they are working to get balance in his muscles by experiences which his is doing daily. while at the first physio appointment she mentioned that Jake`s legs were showing signs of vitamin d deficiency, and suggested i spoke to the doctor to have blood tests, which i did only to be told i would need a letter from the physio. So i waited till his next appointment yesterday  about the letter and told the physio she was a bit shocked that they wanted a letter from her but said she would send one. i am sure the doctors think i am just asking for the sake of it but that is not the truth i get told one thing by one only to be told another thing by another it is baffling and confusing not only for me as a mother trying to manage my sons symptoms and keep him trusting the doctors he has to visit. now i have to wait weeks for this blood test to be sorted.

Jake has vaso vagal syncope he gets palpitations and eptopic beats which scare him and give him anxiety, please excuse if i spell these wrong. so we had this letter from the heart specialist to take Jake to a&e or call and ambulance if they last longer than 20 mins. so maybe they can catch them on the ECG trace and the last visit to A&E they said it was sinus tachycardia, then he was fitted with a 7 day holter tape , which after a couple of weeks the doctors sent a letter to say that yes it did pick up the faster beats and the eptopic beats but it was perfectly normal. i thought that was the end of it but no they sent me another appointment months later to discuss the results i assumed months of unnecessary, worrying to be told basically you may grow out of it in your 20s  and we are not going to do any more monitoring we will see you again before your 16. three years away. why did they write it did pick up the fast heartbeat and the eptopic beat on the letter then why not say in the letter we wont be seeing you again it would have saved my son from unnecessary stress and anxiety,  now we hadnt seen this doctor for a while and normally she gives you a chance to talk and ask questions i tried to speak to her about the results of the physio,

Because the were relevant to some of the pains Jake felt that was part of the reason for his referral to them in the first place, but she just kepted speaking over us like we were a nuisance and wasting her time, i wanted to ask if infact my son is deficient in vitamin d would that be something that would add to his symptoms of his vaso vagal.

To say i was extremely emotional, when we left is an understatement i could see the anger and hurt in Jake¬s eyes again i mean he has only just started being able to speak for himself about what it feels like for him. I wanted to get him away from that bad atmosphere as quick as i could but the car park had other plans i payed my ticket went to the barrier and it wouldn`t let me out had to continually press the buzzer which noone answered with a lot of cars waiting to get out behind me. in the end i had to phone a number good job my phone had reception as normally it doesn`t at this hospital. only to be told to move my car out of the way so others can get past and wait until someone came, buy this time i am stressed my Jake is stressed, the emotions got the better of me i am trying to stay calm for Jake`s sake the guys says you have to pay again it didn`t register, go to pay again and realise i left my card in the other ticket machine, see what i mean about how stressful just a simple appointment is especially if they could of written in the letter they weren`t going to see us again. Got my card and left had a real good cry.

You know the doctor said three times today we are not saying your lying well the fact that their tests showed the fast heart beat and eptopic means we weren`t so why imply it three times, the tilt table he had at the beginning which was positive we all saw it we were all in the room.

Now we have know mental health support for his anxiety no support for his physical symptoms. this is our life it has been for all these years now this is why i wrote the book to say what it is really like to be isolated without support for not only our family but many other autistic adults children and their families.

It is a big raising awareness of lack of understanding and support, i am a mum who values my kids needs for the correct support and that they are given a chance to communicate how they are affected by their difficulties my son maybe verbal but it has taken so long to give him the confidence to speak up about how he feels for it to be, dismissed as nothing again it is not nothing to him.

 

 

Hi all hope your day has treated you well, mine started with a face time call from Niki she was waiting for the toy shop to open, this is the first time she has been away and not been in constant contact, connectivity is not great where she is staying. kind of a weird feeling but she is coping well with that, she is having a wonderful time. i am so pleased for her. Tom and his family have accepted her for who she is which is something i love a lot. to us Tom is just a part of our family he makes Niki so happy.

Jake and me went out today and braved the heat, we had fun, got to choose some new books for Jake as well he is reading Tokyo ghoul so we got number 10 and 11 today.We also got the fourth Dark mouth. This series of books is what change him from fact books to reading  it gave him something he could do if his anxiety was bad and he needed space or if he had trouble sleeping. he really enjoys Reading. some books he reads to himself and some we read together, one i perpetually enjoyed was Radio Boy that one i could barely stop laughing enough to read it out loud.

I got a little into that one my hubby had to tell me to slow down, i just wanted to get to the next funny part.

My brothers a superhero , and the ones after that were fantastic too, when choosing books for Jake when he is not with me , i always like to read the back, and obviously the title and how the book cover looks,

I am still waiting for the first reviews of my book to go up I guess it is always a tense wait for new authors, until then it is just a matter of keep doing my little blogs to keep my book out there, the weather here has been very stifling, dont get me wrong i really love the sun and it is great for  it to be sunny especially in England in the summer, but it is a really humid sticky heat.

Jake`s  has his physio Tomorrow his posture has improved all ready he is realy working hard on doing the excersizes every day,  his back has been a bit painful but he is persevering with it. He is growing so very tall so quickly now,

my mind has just suddenly gone blank so i will say good night for now

have a beautiful day or night which ever it may be for you

Faye

 

 

Hi all hope your week has started off well, It has been very relaxing here but quite without our Niki, miss her little noises and musical`s and texts can you bring me some milk, (mum, mum,mummy, mother) or the drops of her phone on the floor.

even the times she calls because she has got stuck somewhere all these little things that make up her personality, they are just so her.

I found selfies of her on my phone, a reminder of her beautiful little smile and pictures with the obligatory tongue sticking out or peace finger signs.

After she left, i spent a little time setting up my author page on amazon ready for people to leave reviews i am quite eager to interact with people this way am open to any reviews they all matter, even ones from family,

Here is the link if you want to check it out

https://www.amazon.co.uk/Emo-Emotional-Elf-Faye-Farmer/dp/1912333562/ref=olp_product_details?_encoding=UTF8&me=

hope that link works let me know if it doesn’t still a bit of a newbie on tech but i am slowly teaching myself and figuring it out while i go.

Jake has a few hospital appointments this week physio and heart specialist, pretty sure by the end of the week we will have obtained the blood test form as well, fingers crossed for that, he is still at the moment willing to try a blood test.

They haven`t been successful before other then sitting in a chair, this is anxiety for you , you never know when it is going to come, and although i do believe it is important Jake has this blood test like the physio said because his legs are showing signs of vitamin d deficiency, i will never force him as that will just exasperate the fear of blood test, we are working on him making the decision for himself, so he feels in control of his anxiety and what happens to his body.  I mean he is still a child but he is also a teenager that will one day make these decisions for himself the only time i will have to go against that is if it is an emergency or he is at risk. we had that before and a little gas and air was used before it was so much less stress full for him in that emergency situation.

Yesterday was spent listening to music with my hubby Jake was doing his own thing popping in every once in a while when a good tune came on dancing or just to give us random hugs. we all just spent time together in the evening watching more super hero movies, i so love these small simple things in life.

I love the way my hubby`s eyes light up when he talks about his DJ days, the corner the cheeky grin when he gets really into the story or the song, the way he uses his hands to demonstrate how he used the mixers and records, his hand moving to and throw like a metronome. or the way he really gets in to the beat and shimmies his shoulders, shakes his hips. He even spins sometimes. we played so many different genres, and yes their was even some spice girls, Micheal Jackson, Luther Vandross and Madonna, amongst many more. some real soul and reggae Bob Marley (one love) such a great song. i prefer this music not keen on the clubby music that makes you feel like your being hit on the head to the beat, all though my hubby likes keeping up with the current music trends.

My hubby over the years got to work with many artists, from Ray Lewis, from the drifters, he actually lent my dad a pair of shoes to get into a night club they were going to once.  and always talked to us after he did a show where my hubby worked as a DJ a very down to earth person always with a smile. and many other famous artists.

You just cant beat old style mixing with records, his party sets were legendary. i met him threw one of his nights, and i was hooked the minute I laid eyes on him been that way ever since.

Josh my oldest i love our chats we talk about many things health and fitness health medical stuff it is something that flows easy,  but it is the ability to talk and debate many subjects with Josh that keeps our brains sharp he is an awesome young man he is so intelligent funny he makes us laugh so very much.

That`s my update for today. The book is progressing every day, a bit like our family good things take awhile and a lot of love and nurture to become great things, slow and steady wins the race.

have a beautiful day

much love Faye

 

Hi all what a beautiful day today has been, today started early for me any way woke up at 6.30 the kids and hubby still asleep, had to catch up on the house work as we had guests coming.

Got what I had to do done before Niki woke at 8.30 we had to make a quick dash to town to see if we could sort her glasses before she went on holiday.

Not much joy in getting them fixed plus because she has turned 18 now and her eyesight hasnt change much the first optians couldn’t do new frames on her NHS voucher. They wanted £110 just for frames which to pull out of know where is kind of hard. So we went to the new optians who done her eye test and managed to get her new ones made up.

They just won’t be ready for two weeks, so fingers crossed they last till she is back without them she can’t see.

Niki had her boyfriend and his parents and brother come over from Holland for camping trip which she got to go spend ten days with them before her and Tom come back here for a week.

She was so excited waiting for him at the gate she jumped into his arms when he got here.

We put on a barbaque and ate outside under the gazzeboo, and just chatted for a while it was such a beautiful chance to get to spend time with Tom’s family as he has become so very much apart of ours .

Jake even joined us at the table, which he can’t always do but wanted to impress them too he looked so smart he wanted to make a good impression as he knows Tom is important to his sister.

My hubby Niki cooked the meat while I did potatoes and salade.

After saying goodbye to them we just relaxed the three of us, Nik had a nap as he still has a nasty cold Jake was talking to his Minecraft friends, while I got down to some work making an authors page on Amazon, these little things my hubby tells me about that I would never of thought of myself being a new author really helps. Sometimes I wait a while before doing what he thinks will be good, because I can be a stubborn person who needs time to digest and process facts before I actually take his advise, I always seem to get to a point where I want to withdraw back inside I guess that is a self preservation thing.

Now I have done it I love it, I just hope tommorrow when I look at it again  tommorrow I hope there is not much  editing to do.

My hands just type from the heart, my eyes don’t always see,.

This evening we have all just been relaxing watching super hero movies. First time I have seen a big green Hulk bottom 😂😂 the kid in me found it funny.

I think in our house we have seen all super hero movies multiple time they never grow old.

For me watching a movie and reading a book is enjoyable first time round, bit when you watch and read again you pic up things you missed the first time round.o drive my family nuts asking questions through films I always want to know the ending first some times I do that with books too not so much any more but before I did.

When I read a book I can never put it down when it is finished.

I guess that is all for today a very calm relaxed day for us all.

Not long heard from Niki she is having an awesome time so far. I guess the house is very quite without her popping in the room to do musically’s or dropping something on her floor, or even her snack dashes.

Hope you all have a beautiful weekend 😀💖

Much love Faye