On Thursday 14th April Squidge celebrated her 4th birthday. Here are a few photographs from her sp...

On Thursday 14th April Squidge celebrated her 4th birthday.

Here are a few photographs from her special day...



















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As I sit and write this it is only 9am and I have no idea how I am going to make it through the rest...

As I sit and write this it is only 9am and I have no idea how I am going to make it through the rest of the day.

In fact, all I want to do right now is climb back in to bed and tell today to f#%k off.

My children have broken me.

I'm not sure what I have done to deserve such horrendous behaviour from them, but I figure I must have been a very bad person in a previous life.


Okay .... so I'm being a little dramatic harsh.

It's not ALL their fault. 

I'm guessing that being sleep deprived and completely stressed isn't helping me manage the situation very well.

But it feels like their behaviour is spiralling out of control .... and I have NO clue what to do about it.


From the moment Roo stepped through the door after school yesterday I knew she was going to be 'difficult' to handle.

She gets herself into these moods, and once she is in them it doesn't matter what you try to do, or say, it is impossible to get her out of it.

She cries for/about EVERYTHING.  
She screams.  
She slams doors (to the point where she has actually knocked my bathroom door off of it's hinges).
She gets herself into a 'tantrum' and rolls around the floor.
She throws things.

And she is incredibly stubborn.

She went to bed in a tantrum last night, and it started again as soon as she opened her eyes this morning.

I made her some breakfast and she refused to take it from me.  
So, I left it on the table next to her.  
The result? .... She sat and cried for almost an hour because I wouldn't physically hand the bowl of cereal to her.

She refused to get it herself, even though it was literally inches away from her.
Then she refused to get dressed.
And then she wouldn't let me brush her hair.

She's only like it at home.

Everyone else always comments on how lovely she is. 

So what am I doing wrong?




I can imagine that there are quite a few of you reading this and thinking "that child needs some serious discipline".
But here in lies the problem.
NOTHING WORKS.

I have tried 'time-outs', giving extra chores as punishment, sending her to bed early, taking away the things she likes the most, technology bans etc, etc, etc.

It has ZERO effect on her.

I have even tried looking at things from another perspective and have tried to find ways to be more understanding, and I tried to create a place for her to go and calm down.

I purchased a tunnel tent for her bunk bed and got her some sparkly heart fairy lights and fluffy cushions.

I created somewhere safe and relaxing for her to go when she was stuck in one of her meltdowns.

It didn't work.


I don't give in to her tantrums.

The result? .... She cries for several hours at a time.

It's making life miserable, and I am finding it increasingly more difficult to keep calm and not lose my temper with her.

I don't know what to do to make things better, and I'm not sure how much more I can take


I eventually managed to get her dressed and ready for school this morning only for Squidge to then decide that she was going to refuse to go to school.

She threw herself on the floor and screamed.

I don't know if you've ever experienced a toddler in a tantrum, but they have this unique way of making their bodies completely limp and incrediby heavy.

It was impossible to get her to leave the house.


It was the straw that broke the camels back, and I am that camel.


Luckily Daddy D was still home, as he is starting work late today.
He took Roo and Little Man to school in the car for me so they wouldn't be late, but I have had to keep Squidge home.

The only other option was to make everyone else late for school.

She is only attending nursery at the moment (which isn't compulsory) so even though having to give in to her and keep her home is not ideal, it isn't the end of the world.

The biggest issue is when this happens and I am here on my own and we have to walk to school.

If Daddy D hadn't been here this morning I don't know what I would have done, or how I would have been able to get the other children to school.


I feel so stressed out by everything at the moment.

I know I have focused on Roo in this post, but it's not just her.

I am contending with all of the medical issues that are happening at the moment, while trying to deal with extremely challenging behaviour from several children, and all while not really sleeping properly.
It is all making for an extremely short tempered, exhausted me.


I could quite happily just sit here and cry this morning.

I feel like I am failing.


I will try to be 'better' tomorrow.  

But today?

Today I am broken.

Missy x

Every night I am laying in bed, wide awake, and struggling to get to sleep. And then, when I do fi...

Every night I am laying in bed, wide awake, and struggling to get to sleep.

And then, when I do finally manage to doze off, I end up waking up every other hour panicking that something is wrong.

I convince myself that one of the children are up and needs my help, or that Squidge needs to be checked in case she has had a seizure in her sleep and choked on her own vomit.

I can't switch off my mind.

And the days are exhausting.

I am competing with Boo's behaviour, which is increasingly getting harder to manage as he is reaching puberty.  
I am trying to deal with Roo's 'attention seeking' tantrums.  
I'm trying to keep the 'terrible trio' (Little Man, Squidge and Bubba) occupied and happy.  
And I am constantly on edge and worrying that Squidge is going to have another seizure.

If she is in another room and doesn't answer when I call her then it causes an instant panic and I have to run to make sure she is okay.

The last time she didn't answer when I called her I found her unconscious at the bottom of the stairs.

I feel stressed ALL of the time.
Which is exhausting in itself.
But now the stress is stopping me from being able to sleep.
Which is making the exhaustion even worse.

I am becoming irritable and short tempered.
And it is a never ending, vicious circle.



The good news is I have been able to get Squidge's blood tests brought forward by a week after ringing the hospital and explaining everything to them and how much it is effecting us at home.

At least that is one less week to wait before the referral can be put through for a neurological assessment.

In the mean time I remain on edge, and unable to sleep.

Here's hoping we get some answers before I start to look like an extra from The Walking Dead. 

Missy x

Please don't take this post the wrong way. I'm ALL for people raising awareness of Autism,...

Please don't take this post the wrong way.

I'm ALL for people raising awareness of Autism, and what it is like to live with it, but for the people who are living with Autism (or with someone who has been diagnosed) it is SO much more than just one day/one month.

It is every minute.
Of every day.
Of every month.
Of every year.
For the rest of their lives.

Sometimes it is exhausting.
Sometimes is heartbreaking.
But it is also exhilarating!

It makes you see the world in a completely different way.
You find new strengths inside of yourself.
You find yourself capable of coping on the smallest amounts of sleep.
You become accustomed to finding new ways around things and new ways of seeing things.

Every single day is different.
Every single day is a learning curve.
But NOT every single day is hard!

I have a child. (Actually I have 6 of them.  I know... I'm insane).
He has Autism.


Autism isn't who he is.

He is just a child!

A child who processes things differently to other children.

The biggest thing I want people to know (and that I want my children to know) ?
That different is NOT bad!
In fact .... Different is GOOD.

Yes, sometimes things may be a little more difficult.
Yes, it can be frustrating (and heartbreaking) to see those struggles.
But everybody struggles at some point in their life.

I want my child to know that he can doing anything that he wants to as he grows up.

I want him to know that anything is possible.

If he wants something he can get it.
It may take him a little longer.
He may have to work a little harder.

But NOTHING IS IMPOSSIBLE.


Of course, raising awareness is important.

It helps to end the stigma that surrounds 'invisible' disorders like Autism.
It helps people to see a little snippet of what families like mine are coping with every day.
So, by all means, raise awareness.

Show your support.

But while you are raising awareness of these disorders, can I ask something of you?

Can I ask that the biggest thing you become aware of is the people?

Living, breathing people.

People with thoughts and feelings, just like you.
People who want to be treated just like everybody else.
People who have the right to be respected and valued, just like everybody else.
People who deserve to be given the same opportunities as everybody else.

It can be very easy to be lost in amongst all of the facts and figures that are thrown at us at this time of year.

But it is so incredibly important to see the person... not just the disorder.

Missy x
.


Last night Squidge had another seizure.  It wasn't as severe as the last, but was still just...

Last night Squidge had another seizure. 

It wasn't as severe as the last, but was still just as terrifying. 

The worst part of it was that I didn't know it was happening. 

During her last seizure her big sister CJ had been with her when it had started, and we had been able to observe her during the whole thing. 

This one was different. 

My parents were visiting, the children were playing, and everything was pretty ordinary. 

I called Squidge to come and get changed, but she didn't answer me. 
Thinking she was upstairs, I continued to call her name but got no response. 

Then I saw her. 

She was at the bottom of the stairs 

She was unconscious. 

Her lips were blue. 

She had vomited. 

We moved her onto the floor and my Mum put her straight into the recovery position. 

Luckily it wasn't as severe this time. 

She started to wake up a lot faster and although she was quite vacant afterwards she started talking a lot faster than she did after her last.



didn't call an ambulance this time. 

When she was taken to hospital after her last seizure there wasn't a lot done. 

She had a blood gas performed and was observed for a little while, but they sent her home and told me to see her GP for further investigation, which we have done. 

I'm still arguing with myself about whether or not I should have taken her to hospital last night. 

She recovered quickly and has been fine today but it is really playing on my mind. 

The vomiting that happens before the seizure and loss of consciousness is completely silent!

There is NO warning. 

What if it happens during the night?? 

I am keeping a diary of what happens during (and after) her seizures in the hope that it might help the doctors get to the bottom of it all. 

I am calling them seizures, but the truth is we don't actually know what is happening. 

We do know that she is also having vacant episodes at school as the teachers raised concerns with us at her last parents consultation. 

We have been given an appointment for Squidge to have a full set of blood tests, and then the doctors will decide whether or not to refer her to neurology. 

The blood test isn't for another month!!

I'm not sure I can wait that long. 

I am on tenterhooks ALL of the time, wondering when her next 'seizure' will be. 

One thing I do know ..... If Squidge has another seizure/episode before she goes for her blood tests then I will be taking her to hospital and refusing to leave until I know what is causing it all. 

I am so incredibly worried for my baby girl.

Missy X