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.

Alone and drowning

 

 

Have you ever felt like your failing your child?

This is how i feel at the moment. I feel overwhelmed. Like im drowning.

I mean on a day trip today with a support group, after one too many meltdowns from Junior, i cried, i mean i held my hands up and said “i cant do this anymore today”, it just became too much. Does that make me a bad parent? Or just human? Surely we all have a breaking point.

Its these low points when the Cubs are in bed and im alone with my thoughts, going over and over the day. Nitpicking at what went wrong. Trying to pinpoint the moment before the meltdown, any possible triggers. Its these nights that mentally exaust me, but i cannot sleep.

Dont get me wrong its not all bad. Junior had some good points today. He interacted with others well. Even at one point was kind, and allowed another child to wear his ear defenders. Yup you read right, he actally shared!!!

Even though we were in a group, i still managed to feel alone. This is a feeling that surfaces the most. Nobody wants to be around Junior. Sometimes i dont blame them, but hes my Cub and i will defend him to the end. How can one person feel so many different emotions. I dont want to adult anymore. I dont want to feel stressed, angry, sad or like a failure anymore!

I just want a full 24 hours or even 12 hours of pure care free happiness, as a family is that too much to ask. Or is this me been selfish?

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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. ❀️

Consistency & progress

imageI often sit and wonder, will my life contain any consistency? Junior and Alfie crave consistancy, but Junior is so unpredictable. He can go from 1 to 100 in 0.1 seconds. I can’t always see a trigger. Am I blind? Is there a trigger? I’m mentally exausted. It’s as if I get sucked into a false sense of security, that we have finally made progress.

We went on a trip to Dalby Forest yesterday with a support group we have just joined. We had a good day, a better than good day, he smiled had fun and the other children actually got him. Junior only had two meltdowns during the trip, nobody judged, nobody stared. After Junior punched me I got asked if I was ok, and that was it. The support was amazing. The feeling was amazing that Junior could be himself and nobody mentioned his screaming, loudness and social inappropriateness. It was all too much at the end of the day and ended in an epic meltdown, to which he fell asleep to.Β image

I thought today we be good. How wrong was I? We have had meltdown after meltdown. I don’t know if punishing him for hitting his brother helps or makes things worse? If when I tell him off for swearing, am I making it worse? Tonight Juniors gone to bed screaming, saying “I hate you Mum” I don’t know if he knows how much he affects me, or if he does it because he knows it gets to me? After all the positives we have had I feel like we have taken a massive backwards step. It seems it’s just getting harder and harder as he gets older, and the summer holidays don’t help.

But after all tomorrow’s another day. I must stay with the positives.Β image

Appreciation

Today I feel bad. I feel bad for complaining about my Cubs, for complaining about Juniors behaviours, for finding motherhood hard. I have just read a blog on Facebook, about a Mum who had lost her child. I’ve come across a few of these blogs lately. I cannot even begin to comprehend what they are going through. Yet I still find myself getting so cross with the Cubs, and wishing for just a hour alone. How I can wish this? when there are Parents out there, who just wish for an hour with their child again, just a moment to hold their child.

This has put my day in to perspective. Yes we may have had a stressful day. Junior may of screamed most of the day during filming (we filmed for a water park TV ad). He may of flooded my bathroom, refused to eat his tea, fought with his brother and just talked himself to sleep talking about cars, and the filming droid they had during filming, resulting in me having a headache. The other two cubs can be heard talking to each other in bed, when they should be sleeping. But do you know what this is my life. I’m going to stop wishing it was any different, because it’s not going to be. We need to embrace Juniors behaviours more, find ways around things, recognise triggers more. We need to do more as a family. We normally do when Hubby’s here, but I don’t like to take them out on my own. Meltdowns aren’t pretty, let’s be honest.

we all need to be more thankful and appreciate what we have. After all nothing lasts forever.

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