The EEG

I havent posted in a while. I have a lot to get my head around. I will forever be grateful for the amount of support and well wishes i have recieved through Instagram and the blogging world.

So Junior had his EEG.

We had lots of questions to answer again. Most of them ones we had already been asked.

We explained we think Junior had another seizure which we described in detail and also the two absenses we think he may of had. I also explained, that i feel im going crazy, that i may be looking at something which is not really there, or reading to much in to it.

Junior did really well and tolarated the Nurse putting all the wires on his head. He followed instructions well, open and close your eyes, keep them close, open them, blow this windmill, look at flashing light. He kept as still as he could. I didnt notice anything unusual during the test apart from his leg twitching a lot during the blowing exercise, again i dont know if im looking into it too much.

Im so glad we took advice from a fellow blogger and took a hat, his hair was a mess! And Junior has a need for perfect hair! not a good mix.

The test didnt take that long overall.

We took Junior for a walk around York, had a Mcdonalds and a trip to Lush to choose a bathbomb for a relaxing bath when he got home. He settled on a little butterbear.

We also have managed to get a sedative for Juniors MRI which is due soon. What a carry on that was. The Dr originally didnt want to prescribe one, until he took a proper look at Juniors notes and must of realised, he wont keep still.

This journey in equal measures is going too quick, but also at the same time its going too slow. I really want answers, but equally im scared of the answers. Junior will still be Junior, i just worry about his future.

“Your Son definatly has a disorder”

IMG_20161011_175308.jpgHearing them words, even when you think you are expecting them, knock the wind out of you.

So many feelings.

Elated, a proffesional sees what i see, im not going crazy. Im not a bad Mum after all. We are finally going to get some answers. An officially diagnosis. We will get help.

Sad, because what does the future hold? Junior is upset with me. This appointment was the first time, ive spoken openly in front of him.

Confused, we have always been told that Junior more than likely has ADHD and Asperger. The paediatrition isnt sure, although he thinks there may be some ASD there. Junior doesnt tick every box! I was only just coming to terms with ADHD and Aspergers. Now we are back to square one. Comfused, what will happen next?

Everything is coming all at once. So many tests. Millions of repetitive questions on family history. So many unanswered questions, are they trying to find blame? Point fingers? Trying to figure out if im just a bad parent? Theres too many appointments. I feel trapped in a whirlwind.

I can only imagine how Junior might be feeling. All i can do is answer his million and one questions.

I have never felt so nervous in my life, we are awaiting so many answers. We have so many questions.

I have to figure out how to explain it all to Junior.

First things first though, we will hopefully know by the beginning of November if Junior has Epilepsy or not.

This is one long journey.

We can finally see a light. Im not sure if im ready for the answers yet though…..

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Just a Mama wanting answers…

IMG_20161002_175757.jpgi feel im lost in a fog. Everythings hazy.

It could be the lack of sleep.

Since Junior had his seizure, and speaking to the Epilepsy Consultant, im so scared that Juniors night time jerking and twitching, is actually seizures.

In my last post i wrote about how quick everything was going, it was a whirlwind. Now it seems to be the complete opposite. It feels times slowly ticking by, almost stopping.

Im impatient you see. I want answers. Google, and YouTube arent giving me the answers i want.

I find myself studying Junior all the time, every twitch or jerk he does, asking if hes ok. He goes quiet for a minute, im shouting his name, for him to respond. I feel like im going crazy. Every phonecall while hes at School or im at Work, my heart sinks.

Im obsessively watching the small clips of Junior i have managed to film so far. Looking for clues that its all in my head. That its just normal sleep twitches and jerks.

Deep down though i think i know the answer to my own questions.

It breaks my heart. Im holding out hope it was a one off, until he does have the MRI and EEG. Until the consultant has viewed the footage. Six weeks feels like a Millenium away. Lightyears. I feel like im going crazy.

Ive only just started to come to terms, even grieved possibly, with the fact that Junior has Aspergers and ADHD, maybe even SPD. Now we have Epilepsy thrown into the mix. I have only explained the Epilepsy to Junior. I dont know if im just been selfish. Over thinking and worrying too much. Isnt that a Mothers job though.Maybe i need to take a step back. Stop researching. Take a leaf out of Juniors book and just carry on with life. One day at a time.Wait until we get appointments and results, and cross that bridge when we get to it.

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The First Seizure

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Thursday the 29th September started off as any other day. The usual morning. Tantrums, attitude then breakfast club at school. Nothing was unusual.

I went to do my car theory test and passed, i was beyond happy and phoned to tell everyone the news. I went home, made my lunch then sat down to eat.Β Then the phone rang. I saw it was School, i rolled my eyes, and thought, whats Junior done now.

If youve read my previous posts, or follow me on Instagram you will know all about Junior and his behaviours.

School informed me they need me to go up their asap. Junior feels sick and appeared vacant.They didnt want to tell me too much on the phone. I phoned Davie (hubby) at work to let him know, im picking Junior up early. He said he was leaving work, and wouldnt be long. I got to school in 10 minutes. Junior was a funny colour and appeared confused, he kept looking at me, then around the room. He was silent, only nodding his head when i asked if he was ok. He was very still. These are all unusual behaviours for Junior.

I spoke to the Headteacher privately. Junior had gone to his office to speak to him. Junior had a funny feeling in his stomach, then his throat. Junior had gone vacant, then dropped to the floor, been lowered by the teacher. Junior then jerked and his face twitched. He was then incontinant. The whole seizure lasted 20 seconds.

We went to A&E the it was a rush of doctors and nurses. Doctors shouting for an emergency paediatric consultant and a bed on a paediatric ward. It was all a whirlwind, so much happening in such little time, it was so overwhelming. There were no beds, we had our own side room, after all tests had been done, Davie arrived then we got the good news his heart was fine. His obs had picked up. After 4 hours we moved upto the childrens ward. Junior had an overnight stay, with Daddy. We spoke to a Epilepsy consultant. From my family history and my severe migranes they diagnosed that Junior had a Focal Onset Seizure. He also told us that there wae a likelihood of it happening again. We recieved some brief training and told us Junior has to be strictly supervised at all times. He also mentioned Junior has most likely had many small seizures and they have gone unnoticed. I mentioned Juniors night time jerking, face twitching and gutteral noises. I always thought it was Juniors body shutting down for the night, after been hyper. The consultant thinks they may be seizures, and to record them. We are awaiting an appointment to see a Epilepsy specialist and we are going to York for a MRI and EEG.

It all seems to be moving so fast. Its all so overwhelming and feels surreal. Ive been reasearching and googling non stop. Nothing is telling me this was a one off. Its all so scary and new at the moment. Its hard to focus on anythig else.


I do know i have a super brave boy, who is taking this better than i am πŸ’™

Energise York

Yesterday we visited Energi Trampoline Centre in York. I did briefly mention this in my last Blog post.

I did mention the hellish Coach journey.

The actual centre was well worth it though. We went to the Autism Friendly Session. When we arrived the lighting had been turned off, as had the music and the hand dryers in the toilets, also the amount of people allowed to the session had been reduced. The Staff are all Autism aware.

Junior chose to take his ear defenders ‘just in case’ but they werent needed. It was quiet, even with lots of excitable screeching from the Cubs.

When we arrived we purchased some ‘special trampolining socks’ which the Cubs happily put on, and havent taken off in 24 hours. The Cubs got given the option to wear wristbands or not. My Cubs chose to and now wont take them off. We then watched a brilliantly made video about ‘rules’.Β IMG_20160825_184457

 

The actual centre was brilliant. The sessions last for an hour, but honestly that is more than enough bouncing time. The Cubs litrally bounced off the walls. Climbed rope and dived in the foam pits. When my Cubs did break the rules, the staff told them in a firm but fair way, then letting them know the rules are for safety.

 

 

The session ended with the Staff prompting the Cubs 10, 5 and 2 minutes in advance, then telling them the session was over. They usually use a speaker system, but dont during Autism Sessions. When Junior went missing at the end of the session the staff handled it brilliantly, they even handled Juniors meltdown brilliantly, getting access to his locker (it wouldnt open) quickly.

The cafe was reasonably priced, the staff were friendly and the tables and floor was clean.

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All in all we had a brilliant time, and would go back again. I would highly recommend this place.

*i have in no way been payed for this review. All opinions are my own, and i am not connected in any way to Energise.

Adulting

I have tried to take a step back from blogging, and social media.

I have come to the conclusion that i need to blog and spend time on social media. This is my outlet. My support system. I need social media as much as i need a cup of coffee in the morning.

I never ever in my lifetime imagined that adulting would be like this!

You see one of my main problems, (which im well aware of, but cant help), is i plan everything, i mean everything in my head. If it doesnt go my way then i sulk. Thats just me.

Adulting and Parenting is like that. I had this little fairytale, my life planned out, mapped out. It never happened that way, not one little bit. Im not dissapointed i love my Cubs to death. I love my Hubby to death, most of the time (all of the time really).

At the moment i cant help but feel stuck. Stuck in the sense, that Junior is out of control. Stuck that i dont have a life, and i dont know what direction to go in. Im not even sure i enjoy my job anymore. I seem to be penniless all the time. Everyday is a constant battle. The Cubs fight. The Cubs argue. The house is a shit tip (Always the same in the Cubs holidays). I cant see my friends, they always have an excuse (they just dread meeting up with my wild Cubs). Just when i feel me and the Hubby are getting on we start to bicker. Thats another thing added to the daily stresses. Everyone else seems so care free, while i feel stuck drowning in this fog, the light at the end of tunnel growing smaller, not bigger.

I dont blame other people for the way i feel now, ive realised that my feelings are down to me. I need to worry less and enjoy life more. Im sick of been moody, sick of been stressed. Its days like this i wish neverland was real.

The most important thing is though is enjoying my family more. Getting to the light at the end of the tunnel. Been less moody with the Hubby. You only get one life, its time i start living it now β™‘

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Our Reality

 

 

image.jpgThis is our reality.

Junior got angry. I couldn’t explain to him what was going to happen throughout the day while I was at work. He destroyed the trampoline. Juniors speciality as you might want to call it, is destroying things. I honestly don’t think at the time it’s always intentional. He regrets the trampoline now though. This our 4th one, and definitely our last. Yes we do try to stop him, but it’s not always possible.

This is the part I struggle with most the violence and destructive behaviour.

Tonight Junior really hurt my arm and foot. The toughest part is he literally couldn’t give a fuck. None at all. He’s just concerned about himself. He turns it all around, so the attention is all on him. I told him he hurt me. His response he ripped his tshirt and ran upstairs screaming and shouting “you’re gonna kill me”.

Two minutes later he’s back downstairs trying to discuss what Van my best friend just bought?! And people wonder why I think I’m going crazy!

Dont get me wrong. We have had some great days. The families who also go to YCF (a support group) have been faboulous. The trips have gone well. Well as well as they can go, but no judgement is passed.

One thing that I often sit and wonder about is do things get easier? Surely there will become a time when the good days will outweigh the bad?

There is one thing I do know though, I love all my Cubs, so surely we can work through this. ❀️