Nothing lasts forever

One piece of advice I would love to share with others is, make sure you capture the memories. Sounds simple, we all take photos, but it’s more than that. Take photos, take videos but more importantly, write things down. We live in a world of digital technology, however, we often don’t use this to the best of our ability. With baby number one, I was obsessed with taking photos. Fast forward to baby number 3 and the novelty had worn off. By the time baby number 4 came along – well, who’s that? (Sorry Jazz, I did capture the toilet picture though!) Also, be mindful of what photos you take. Aiden was a grumpy baby and I was so desperate to capture him when he was smiling that if you were to look through his photo album now, you would have thought he was the happiest baby alive. This is lovely to see and of course they are memories I will always treasure but, it doesn’t truly reflect his journey. There are also those special times when little ones say very funny things or pronounce words or phrases in such an endearing way. In that moment you think you will remember them forever and for a few weeks you do, but after a few years have gone by and more children come along our memories get confused and even fade. I can’t remember what I did yesterday net a lone what Aiden said 18 years a go. I really wish I had written more down. We have our phones glued to our hands now days – put a folder on your phone for each child and just capture those memories because you WILL forget.

Aiden still says phrases now that make me smile – while watching the tv he’ll say, “can you fast forward that back?”

“Do you mean rewind Aiden?”

To which he replies – “yes, fast forward it back.”

He’s said it so often that this phrase has become normalised in our house , the other kids say it and I even find myself saying it sometimes!

One day that sticks in my mind, we were in the car, and Aiden was having a bad day. As usual we were treading on egg shells around him. He seemed to have calmed a little and asked me to turn the radiator up. I thought it was odd as it was a bright summers day, but I went with it, anything to keep the peace and the mood he was in I wasn’t taking any chances. A few minutes later but in a much louder and more aggressive tone Aiden blurts out “I said, can you turn the radiator up?” So as instructed, I wack it up to full blast. By this time I was beginning to sweat and I had to open the window through fear of passing out. Then without warning, he loses it completely, full meltdown head banging, shouting at the top of his voice, screaming, crying, and yelling on repeat “turn it up, turn it up! Seriously, I can’t win, I tried to reassure him that I had done as requested but it was’t enough! Not knowing what else to do and needing to stay alive whilst driving, I turned the radiator (or heater as we know it) off! His screams were ear piercing so turned the radio up full blast to drown out the noise and with that he miraculously stopped! I glanced round and he was happily dancing along to the music! (His mood can switch within seconds) We arrive peacefully at our destination and all was silent.

Aiden says “Mummy are you deaf?”

“No, why?”

“Because I asked to you nicely to the radiator up but you didn’t and when I shouted to you, you did it and you turned it up really loud!”

Finally the penny dropped!

“Aiden, do you mean the radio?”

“yes, the radiator!”

If only I could see inside Aiden’s head I would have been able to save so much heart ache.

I remember that one because it caused him so much distress. Generally we remember the bad memories but there are so many funny moments and happy times that I’ve forgotten.

Capture the memories, the good, the bad and the ugly – because nothing lasts forever.

Yummy Mummy at her Best

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Yes, I hear you! “Please tell me, you didn’t go out like that Vicky?”  I could lie, but the truth is, I did – the more worrying part is that I didn’t notice until I was already out!  My children however, including Aiden, noticed instantly and were mortified!  “Mum you are so embarrassing.” What could I do? It was freezing, in fact, there were flurries of snow in the air, and more embarrassingly, my ankles were probably hairier than the fluffy boots I should have put on, so there was no way I was taking those precious holey socks off!   Suck it up kids, Mums are made to be embarrassing and today is just one of those days.

The reality of this slight misdemeanour is what I find more frustrating.  Why am I not that Yummy Mummy who bounced back into my size 10 jeans after having a baby? (ok, maybe a size 14) Why don’t I leap out of bed in the morning radiating beauty? (Yes, I Know, your beauty is within!) Why don’t I have the time to go to the gym, do my hair and apply my perfect Kylie Jenner make up before I leave the house?  (Um, probably because I don’t own any, but that’s not the point!)

I’m amazed at how our priorities change throughout our lives.  Pre-children, I would spend hours in front of the mirror, doing my hair and makeup and I would love going shopping each week for a new outfit to wear at the weekend.  I would never wear the same outfit twice if I was with the same group of friends and our conversations would revolve around clothes, brands and makeup.  Now, the thought of shopping sends shivers down my spine – after years of torturous shopping trips with a screaming child on sensory overload, that delightful baby managed to crush any ounce of joy out of ever walking into a shop again – And he has the cheek to call me embarrassing!  I wish I had videoed his antics so he could see just what he put me through in his younger days!  

Now a days, I would just be grateful for one outfit to wear out at the weekend that I haven’t bought from that well-known boutique Georgai – otherwise known as Asda- George! And I’m sure many of you reading this are thinking – I would just love to go out at the weekend, and I don’t care what I wear!  My children are older now and I am lucky enough to have wonderful parents who make excellent babysitters.

The point is, life is so busy that we put ourselves right at the very bottom of the priority list and this is OK for a short period of time, but it is not sustainable forever.  Of course, our priorities change – we have to keep another or multiple little humans alive. This is a massive responsibility, but you also have to look after yourself too.  Our children need a healthy and confident Mummy or Daddy to care for them.

We all have our insecurities and we all aspire to be something we’re not.  We don’t need to be that perfect Yummy Mummy, but we do need to take time out for ourselves.  Even if you can’t go out on a weekend ‘yet’ – your time will come. Have a bath, do your hair, put on your best Georgai outfit and invite your friends’ round for a well-deserved glass of wine and adult chatter.

Children will take take take thats what children do! Children with additional needs will take even more! You need to remember who you are, you need to feel confident and healthy so you need to take the time to recharge your batteries and reboot your system – You can’t give what you hav’nt got!

How do you know when it’s time to recharge? When you wear socks with your flipflops out in public!

To label or not to label?

I think this is a very personal opinion and your view will completely dependent on the journey you have taken.

However, for me, I was incredibly grateful for that label, even though, at the time, it truly broke me.

Deep down, I knew from the moment Aiden was born that there was something different about him.

As he grew that difference became more apparent and it felt like I spent my life making excuses for him.

‘Sorry, He’s just tired’

‘Sorry, I don’t think he heard you’

‘Sorry, he doesn’t understand’

These excuses changed after my acceptance, to:

‘That’s just Aiden!’

‘In Aidens world it works like this…’

‘Aiden just has his own set of rules’

The hardest part was trying to justify everything he did or we did because of his behaviours.

Really what I was trying to do, was gain acceptance from others.

Without a diagnosis we had no answers or reasons for his or our behaviour towards him and more importantly, we had no guidance as to whether what we were doing was right.

His label of Autism felt like a massive relief! A relief that I wasn’t going mad, a relief that there was a reason to his extremely difficult behaviour, a relief that there was a reason for his differences. It was also a relief to know that I could now learn to understand him and that ultimately, I could learn how to help him.

However, with relief also came an abundance of guilt and grief. (Which has never gone!)

Guilt – what did I do to cause this? Also, guilt about how I’ve dealt with his behaviours up till that point – maybe if I had responded differently, I wouldn’t have caused him so much distress.

And grief! Well this is complex, because nobody has died. However, the feeling you get after retaliation sets in, that your child and your relationship with your child is never going to be the one you had planned and it is said to be the same feeling as grief!

These feelings then create a cycle which leads back round to guilt again! You feel guilty for feeling like that! ‘I just wanted a ‘normal’ child!’ You envy others with their ‘perfect’ children – because they have the life you had planned! That doesn’t mean you don’t love your child (on the contrary, I think I love him even more!) but you grief for that something that you never had and will never get and feel guilty for even thinking it!

But without that label I think I would have gone mad. I would not have known where to start with helping to support his needs because according to society he didn’t have needs and I would not of been able to grow in my ability to understand him.

It is easy to be caught up in the negativity that surrounds a so called ‘naughty’ child and it is easy to forget how this negativity affects not only their, but your self-esteem.

Professionals say you don’t need a label to access support! That is utter nonsense! Without that label Aiden was a ‘naughty’ school boy struggling to fit in to a mainstream school. I was a bad parent and I was ousted by other parents within my community.

With that label Aiden became a complex little boy who needed specialist provision. He was given access to therapies and social support to enable him to fulfil his life ambitions and to achieve an education and future he deserves. Other people had a name for his behaviour (I won’t say they understood) but with that label their was a degree of acceptance because there was a reason for his behaviour.

They say school days are the best days of your life!

However, for many this is simply not the case and for the parents of these children, school and especially the playground can be a cruel place!

A powerful, yet sad poem, written by a Mum desperate for her child to be accepted.

Your staring is wearing

Your push and your chairing, your meetings of minds

The whispers and nods, your neat lives and neat bobs

Think I don’t notice?

Don’t see you, don’t focus.

I see. And I hear those playground murmurs

Smiling behind veneers of conceit.

Stealth in your voices while you look at your feet.

“There’s the psycho, the sociopath,

The monster in miniature.”

Scum in small shorts. ‘Ignore him don’t play’

I do hear what you say.

Get rid of the fractured who don’t fit the frame.

No reason required. Sweep up the shame.

When the school gate opens, spits out and spills

You think I can’t hear your litany of ills?

My supernova. My fierce firebrand.

Running and spinning, laughing and loving

Life without walls and days without falls

From social, emotional unwritten rules

Struggling to find my face in the crowd

Anxiously seeking some calm in the loud.

Escape route planned, out on licence.

Autism invisible. So is your ignorance.

Different, extraordinary, born with a story.

Wired for sounds with supersonic hearing.

Clever beyond measure. Sees detail and treasure

In corners, small spaces. His mind at the races.

What makes us human, separates mankind?

The need to be loved and nurtured in mind

That’s you, that’s me, we’re a new generation

There is no zero in tolerance. Celebrate difference.

Because a power in unity, a strength in sharing

Means finally, just maybe, we’ll all get to caring.

Anonymous

Do you feel like you are failing?

Sometimes it feels like you spend your days chasing your tail, only to remember you haven’t got one!

On those days when you are ready to give up, just remember how far you’ve come!

Sometimes I think ‘What have I actually achieved today?’

Yesterday was one of those days! So I decided I would write it all down in black and white – Somehow that makes it real and often enables me to see the good as well as the bad!

THIS WEEKS FAILS

1) The kids had to eat breakfast at school some days – they hate that and they are not shy in letting me know!

2) The dog didn’t get a walk everyday – that means no exercise for me either!

3) I didn’t submit an essay on time – not because I hadn’t done it but because I thought I had when actually I hadn’t – Mum brain!

4) Fast food has definitely out weighed any healthy food.

5) School reply slips have been sat in the ‘to do pile’ and are still there – I’ve received the polite reminder phone calls – you know the ones!

6) I forgot about a dental appointment for one of the boys.

7) The boys missed 2 treatments.

ACHIEVEMENTS

1) Three 3,000 word assignments were handed in on time! Whahooo

2) All four children went to school/college everyday – there was a time when this rarely happened.

3) The children were happy because they were being fed fast food – and at least they were fed!

4) I attended 5 appointments for the kids.

5) I collected medications – my house is practically a pharmacy!

6) I completed the accounts – this is a major task and one I’d been dreading!

7) I went to work.

8)I created a chill out den for Jazz.

9) The boys did 22 treatments – which makes the 4 they didn’t do not seem so bad!

10) Mums taxi was well and truly running.

Actually, it’s not been such a bad week after all. We often have high expectations as a parent, we all want to be that perfect parent, so when things don’t go to plan our emotions run high, tiredness kicks in and guilt plays a huge part in making you believe that you have failed.

When times are hard focus on the positives and what you have achieved. You’ll be surprised!

No one is perfect!

BEAUTIFUL INSIDE AND OUT

Being a Parent is the toughest job in the world! Being a Mum to children with additional needs, I believe, is even tougher but it also the most rewarding job in the world! This was my Christmas present from my beautiful little girl, Jazz! Aged 11 (and severely dyslexic). She is my baby and sibling to three big brothers, two with Complex needs! This little girl has it tougher than me because she is a just child yet dealing with the same crazy life. Siblings often end up being Young Carers and miss out on a typical childhood and have to grow up so fast! This girl is beautiful inside and out – this girl keeps me sane! Thank you Jasmine ♥️ #mummyblogger #disabilityawareness #autismawareness #sensoryprocessingdisorder #pda #parenting #dyslexia #bekind #love #family #autismmom

Those quirks that make me smile

This weekend we finished taking down the final Christmas decorations – back to work, school and college tomorrow. 😩

 

So let me tell you about our house at Christmas thanks to Aiden.

 

The outside of our house resembles a tacky toy land combined with a crazy cable city! Aiden loves Christmas lights – and once we had grasped the concept that Aiden didn’t play with toys, we came up with the idea to buy him a new Christmas light every year! Little did we know that this would still be a top present on his Christmas list 18 years on. I’m not moaning, it just makes me smile, and I know there are far worse things he could be obsessed by! Actually, this ones one that his Dad has the time consuming delight of putting up and taking down, so I happily sit back and just smile. As you can imagine, in true autism style, this is a planned and very important date in the diary every year! (It even warrants a days holiday from work for Simon!) Every light has to go back in its exact position each year whether it’s working or not! Yes that’s the most frustrating part! He refuses point blank to get rid of any of them, even when they barely work so, tacky toy land becomes even tackier and the cables that dangle everywhere serve absolutely no purpose! 😂

 

Aiden can’t read or write but amazingly has the memory of an elephant when it comes to the Christmas light display so we daren’t sneak one to the tip (where it belongs)!😂

 

Something else that makes me smile is his love of Christmas jumpers! He wears a different one everyday all the way through December and completely rocks it!

 

The other obsession of his is sellotape! Yes, a little odd, I know but that why I love him! Having PDA gives Aiden the great skill of taking control so, Aiden has claimed the job of displaying the Christmas cards that we receive, and god help anyone else who dare to touch them.

 

What can possibly go wrong!

 

Well nothing too drastic however, the cards do end up literally laminated (with sellotape) to my banister! Aiden gets through rolls and rolls of sellotape! I thinking about asking the company to sponsor him! I think he enjoys the sound it make as he unravels it. He also has to ensure every single edge of each card is covered.

 

Here’s what made me laugh even more. When Christmas cards land on the doorstep, or the kids bring them home from school, Aiden opens them and instantly vacuum packs them to the banister so I never have any clue who they are from. (Thanks, if you ever sent me a card). I rarely send cards but I do have a select few, generally they are for the older generation who live away. This year, feeling righteous and ultra organised, I had stupidly placed the cards that I had actually written on the table and asked Simon (hubby) to post them. Assuming he had, I thought no more of it, until today, when we had the humerus yet difficult job of taking them down! Not surprisingly, Aidens not in control of that job! Aiden, not being able to read, had obviously reopened these cards thinking they were for us and added them to our shiny display! I’ll certainly be struck off those peoples Christmas card list next year! Thanks Aiden 😂😂

WHERE’S MUM?

Today is a study day for me. I’m attempting to do a degree course in special education, I’m in my second year. The fact that I actually passed the first year is enough for me to say I’ve achieved but I’m hanging on in there, only a year and a half to go. Being dyslexic makes it really tough (oh and being a mum to four, and working and being a generally lazy character) but it’s a subject which is close to my heart and I’m hoping my determination will get me through. Thankfully it’s not the same determination that I’m using for my New Years diet because that’s already failed! Or maybe it is and that’s why I failed – it’s a good excuse, so I’ll go with it.

 

Anyway, back to my point, which is today’s title – Where’s Mum?

 

How the hell am I supposed to write an assignment when all I hear is this phrase every 30 seconds? Ok, that’s an little exaggeration, but that’s what it a feels like! How dare I go upstairs

and not be at their beck and call! I haven’t left the country, I haven’t even left the bloody house! 😂

 

Just to clarify – I haven’t even left them on their own, they are with their perfectly capable dad.

 

I love my kids more than anything in the world but sometimes they are like my shadow and that sometimes is always when I really need that time out.

 

Key times when they suddenly appear is: Study time – they desperately need Mums taxi and they need it now!

 

Bath time- that relaxing time when you just want to sit and chill – yep, there they are, they have something really important to tell you, that just can not wait!

 

When the phone rings – again, they instantly need to ask you something or they decide to play with the noisiest toy they own – that’s a great time for electric guitar practice!

 

Adult conversation time – you know those times, a friend comes round for a private chat and your delightful children creep out from their bedrooms where they’ve been perfectly happily and entertained but all of a sudden couldn’t possibly be in there any longer! They are soooo bored they can’t think of a single thing they would rather do, than sit on you!

 

Although I have to say the most annoying time for me is when I go to the loo! We have 3 toilets in our house but no that’s not good enough, obviously they need to use the one I’m in!

 

I know they just need to know where I am and what I’m doing but seriously sometimes I just want to scream!

 

(The pics are of a AAC Book I made for part of my course, many of the kids I work with are non-verbal.)

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