Thursday, 27 August 2015

Autism Mums Night Off....

Last month, myself and a few of my autism Mums went to a charity ball which was the brainchild of a fellow parent carer *excited face*

Everytime me and my ladies got together, we always talked about the ball and what colour we would be wearing so none of us wore the same colour or even worse the same dress!!!!!

Just like most Mums, we dont really have the opportunity to go on many evenings out as it's not as straight forward as organising a babysitter for our children. Our children need specialised sitters with the right knowledge and training and that does not come easily or cheap!

Personally for me, I do more than okay. I have my wonderful wonderful Mum who is amazing with DS. I can leave him with her and go off with an easy mind. There's also DS's Dad, and my partner.

Some of my other Mummy friends aren't as lucky as me :(

Anyway for the night of the ball, all children were in safe hands whilst we met up and trotted off to the ball.

It was lovely to get all glammed up, drink champagne and have an enjoyable evening in the late Summer sun :)

All we did was laugh, laugh, laugh and dance which is just so awesome for the soul! :)

We made a bit of a vow that we would get together and do more stuff like this much more often which we have done already!

I'll leave you with the pics of the night which show just what an amazing time we all had.......

Thursday, 20 August 2015

Carers Centre Fun Day....

I am delighted at having been asked to write in a column for my local Carers Centre newsletter.
I didn't even have to think about and said "yes" instantly :)

The team at the local Carers Centre are a tremendous bunch! They work hard at gaining funding so carers like myself can enjoy things like relaxation nights and spa days to name a few.

Every year the centre organises a fun day for families with disabled or/and children with special or additional needs can come along with siblings, Mum and Dad and have a day of fun.

The beauty of this fun day is that everything is free! Even the lunchtime barbecue offering delicious juicy beef burgers and sausages! Drinks are free too  - Mum and Dad can grab themselves a tea/coffee anytime they need one.

You see, the peeps at the Carers Centre recognise that many families with a disabled child have some sort of financial constraints. For example, like my own situation, I came out of work as my caring role intensified so I could care for DS which meant I lost my income. My story isn't unique to me either, I know many families that had to come out of work or drastically reduce hours to fit around their caring role and that's what's so great about the team at the Carers Centre. Not only are they aware of many situations like this but they also GET it! :)

Another aspect of the fun day that I was thrilled to see when looking at the site map was a quiet chill out area.
In previous posts, I have made it no secret that DS is very sensory and it does not take a lot to overload him resulting in us desperately searching for quiet area and spaces so he can calm down and collect himself.
I am ALWAYS ALWAYS feeding this back to places we go to how they need an area like this! It's probably my top feedback point everytime!

The funday was great and in the most perfect location within Cheshire! It wasn't ram-packed full of families either, just a nice number of families so you could move around the site easily and freely and access activities.
Around lunchtime, DS was showing signs of needing that quiet chill out area, so we went off to it.
It was far away enough to be away from all the noise and families but at the same time close enough to join back in with activities of the day whenever he was ready!
He was that happy in this area that we decided to have lunch here too :)

At the end of the day, I couldn't believe that we had managed to stay for it all! Even my Mummy friends expressed how surprised they were to see DS still there happily playing as it's literally never happened before! I am convinced that the reason was because he had that quiet chill out area! :)

It was such a great day and I felt that we had really accomplished something big by him being able to stay to the end - just 'wow'!

As I have said before, I am big on giving feedback everywhere I go, both positive and developmental but the feedback I left for this day was not to change a thing for next year!

A wonderful and enjoyable day was had by us and I hope that you and your family enjoyed it too - already looking forward to next year! :)

Sunday, 19 July 2015

Our Summer Bucket List....

I can't believe how fast the school summer break has come round again!
I remember sitting down last year, armed with a mug of tea as I started to write my thoughts of the pending 'monster' break.

I wouldn't say that I am a particularly emotional person but I have to confess that I find myself getting a tad watery eyed at the end of every year.

I think it.s because the end of the school year is just another reminder how my boy is growing fast! Too fast!

Also, he is always nicely settled into his class with staff and children before being thrown another spanner by being uprooted to another class, new staff, new children = too much change = too much stress!

I know, I know, I can't stop this from actually happening but what I can do (and have done) is to liaise with school for us to work together to make this difficult transition for him as easy as we can.

School have been fab with this! :)

They've listened to my concerns and fully co-operated with my requests, so I now have in my possession actual photographs of each staff member in the class he is going to as well as the classroom itself.
I am really hoping that this will make a difference to the little guy and make him a little happier when he starts back at school.

I will be talking to him about this and showing him the photographs about a week before school re-starts but for now that is going to be shelved into a corner of my mind along with new uniform, school shoes and the school run.....

Right now, it's holiday time so I've come up with a Summer holiday bucket list.
I hope to do as many of these as we can depending on his mood, what sort of day he is having and the good ol' British weather!

Here is our list:

1) Head to the beach whenever Mr. Sun comes out to play! :) Take our fishing nets, bucket and spades and packed lunch

2) Find a pretty and safe wild swimming spot and go for a dip! Check them out at:

3) Eat chips on the seafront with a bottle of retro style Coca-Cola

4) Camp in the garden. We do this a lot in Summer. Pitch the tent in the garden and even cook our tea on the camping stove. The rules are to only enter the house to use the loo!

5) Agree to a second night of camping in the garden!

6) Practise our bike riding skills as much as we fancy on the front of our house :)

7) Try and convince DS that NO, we cannot live in the tent forever!

8) Explore rock pools for sealife and cool treasures

9) Still trying to convince him that sometimes sleeping in REAL beds in a HOUSE is much better!

10) Play chase and tick

11)Make biscuits and decorate them - DS loves the sensory feedback of flour :)

12) Manage to get him to sleep in the house for one night on the condition that the tent stays up and we sleep back in it the night after!

13) Invite a friend over to play and create a picnic in the garden.

14) Make a den on a rainy day and watch DVDs from it with cool treats and drinks

15) Fill the paddling pool up and pop in a sachet of 'Gelli Baff' which will turn the water into a blue lagoon or red, green depending on which colour you go for.
We love this and use them in the bath for a great sensory play experience.

16) Invite DS's favourite family and friends round for tea/BBQ

17) Visit the Zoo.

18) Visit the Safari Park - the monkeys are our favourite animal :)

19) Have a fab time on holiday!

20) Swim in the local pool.

21) Make daisy chains

22) Make some play-dough and use different food colouring for different colours

23) Do some pavement chalking - I have some cool chunky chalks that I got from a charity shop that's perfect for this.

24) PARENTS ONLY - Try to stay mentally sane and hide in bathroom when need a quiet cup of tea or a glass of wine! :) :)

25) When things go wrong or not to plan, try not to get too hung up about it. I learn from it and try to move on with the attitude that tomorrow is a whole brand new day! I expect some ups and downs

Hope you all have a good holiday and it's as stress/meltdown free for our stars as possible!

Signing off for a week or two.........xx

Wednesday, 17 June 2015

When Someone 'WOW's you out of the blue....

This week, my Mum and I made a little girly date with each other.
Girly dates usually involve some sort of shopping, a nice meal and a glass of wine :)

As I live only a 20 minute train ride from Liverpool and as well as it being the city my folks are from, this is often where we end up!

When I'm out and about, I tend to bring DS  a little something back. It's so funny watching him poke his head into any shopping bags I have as soon as I walk through the door looking for his little 'treat'.

As DS is a very sensory boy who loves to smell things - the stronger the smell the better!
I decided to pop into Lush on Whitechapel in the city centre for the most smelliest bath bomb I could find!

Now before I proceed, I just want to make it crystal clear that this is not a review post of any sort.
I have not been approached to do a product review or have i accepted any payment for this.
This is a genuine honest post all in my words and views about something that I am genuinely thrilled about! :)

So whilst I was in the store concentrating on smelling the most smelly product that they make with all my senses going to my nose, I nearly didn't notice the young smiley assistant approach me!

Apparently, my Mum had been gabbing the leg off her all about DS.(she does this often!)
What he likes, dislikes etc so she had come to find me.

Caitlin explained that her sister was also autistic and as we spoke I started to recognise subtle clues that she was an autism sibling which made me smile.

It never fails to warm my heart how every autism sibling I have met up to now really do have something very special about them.

They ooze warmth, understanding, empathy and lots and lots of patience with a beautiful caring nature within them!

Talking away to Caitlin, it became clear that she also possessed all of these lovely qualities too!

She talked about her sister and what she liked as well as asking about DS but without being instrusive. It was clear that she was trying to gauge what sort of sensory stuff he liked so she could help us as much as she could.

Caitlin took me to a product for children. It was like playdoh but for the bath.
She explained that it was a shampoo, bodywash as well as just something to play with.

There were lots of different colours as well as different ingredients, I opted for the blue one because it was the strongest smell which was  Moroccan Chamomile Oil.
They are £5 each which I think is good value considering the good size they are :)

Caitlin explained that I wouldn't be charged today as it would be a gift as a gesture of goodwill to DS! That certainly has never happened before!

I left the shop feeling completely 'wowed' by Caitlin. Her understanding of autism was refreshing compared to me usually explaining sensory needs to blank faces and glazed over eyes! :(

I left the shop lifted and smiling from Caitlin and curious to know a little more about her sister and her experience growing up as a sibling to her...

Walking through my front door later on that day, I told DS that I had a surprise for him.
He excitedly jumped up and down whilst he unwrapped the gift.
He loved it! :)

It never really made it to the bath as he played with it at the kitchen table, modelling it, then smelling it then modelling it again - it kept him occupied for hours!

It's definitely a must buy for us now and with me being so blown away about it, I just had to share it with you guys! :) as well as talking to someone with a deep understanding of autism, well that doesn't happen as often as it should...(I'm sure you will agree!)

So a big thank you to the lovely Caitlin  - if you are reading this then I apologise if I have spelt your name wrong! xx

Wednesday, 27 May 2015

How to have an Autism Friendly Birthday Party...

This month was DS's birthday!
I love the time of year of his birthday  - May is such a beautiful month and brings the promise of Spring.
My own birthday is exactly 3 weeks after Christmas and if I'm honest, I've never particularly enjoyed it.
The weather is cold, bitter and often frosty or icy. For many birthdays, I've been full of cold and everyone is skint after Christmas and New Year.
I remember many a birthday walking home from school with a scarf wrapped around my face and it going dark. It's become something of a running joke between me and my Mum of me asking 'why on earth did you choose to have a baby in January'? She gives me a different humorous reply everytime I ask her! :)

So with all this in mind, I was determined that when I come to have a baby of my own that he/she would be born during a nice time of the year.

So DS was born during May. I had aimed for May/June so was very happy with that.
It means that his birthday is usually a sunny day and warm enough to play outside with at least one of his presents being an outside or garden toy :)

This year I decided to try something different. I decided to host a birthday party at home but not just any party. This was going to be an autism/DS friendly party.

So I got to work with booking a huge garden bouncy castle, I ordered several food platters, balloons and bought the cake.........and didn't invite any children.

That's right.

No children.

It was a child-free birthday party.

Reason: Well DS is noise sensitive and struggles to tolerate crowds. Children of course produce noise. Screaming, shouting, laughter, squeals etc. All stuff that must feel like nails on a chalkboard to him :(

Another thing is that the only children that DS knows are his classmates and in DS's mind, they belong to school only and certainly not in his home.
You see to him, people have their place. There are clear lines to where people belong.
For example, Mum belongs at home, teacher and children belong to school.
He does not expect to go into school one day and for me to teach him just as much as he doesn't expect to come home to his teacher having tea in our house or the children running around his garden!
So classmates are a no too.

Instead the guest list consist of just a few of his favourite adult family members and he loved every minute of it.

The only child that did attend was my partner's son C who is a similar age to DS.

C has pretty much grown up with DS and has been around him for a good number of years now. He has a good understanding of him, knows when to interact with him and knows when he is best just getting out of his way! DS enjoys seeing him and seemed pleased when C arrived with his Dad :)

The day was sunny and went tremendously well! :)

A few days before the party, I bought the birthday cake but as I was unloading the shopping from the car (with the cake) DS spotted it and wanted it there and then.
I gave it to him and he did this........who said that you have to eat your birthday cake to enjoy it eh? :) :)

He peeled off the icing and then squished the sponge through his fingers like play-doh.
The sensory enjoyment he was getting out of it was lovely to watch and I let him play with it to his little heart's delight :)

So for the party, I bought another cake and expected him to do the same thing (which would of been absolutely fine) but he didn't.

So this party wasn't your usual children's birthday party but that doesn't matter.
What does matter was that it was enjoyable to DS and he was the key focus here.

We are not a 'normal' family and to be honest, I wouldn't want us to be.
DS had an awesome time at his party and a fab sensory experience squishing and squashing his birthday cake. It was his cake so he was free to do with it as he wished :)

Would I do it again? Definitely! All our parties are going to be like this now obviously depending on DS's needs.

But also, myself and the family thoroughly enjoyed it too. I was relaxed and happy as I knew that my Superstar boy was.

My tips for organising an Autism Friendly party are:

*First off, shake your head of any thoughts of a conventional birthday party or what a child's birthday party 'should look like'. Model your party to whatever your child will enjoy even if it means that it looks nothing like a party! It doesn't matter but your child enjoying the day and experiencing their birthday day being fab is!

*Shape the day to the needs of the child (as much as possible) including food, guests etc..

*Create a room or corner for the child to go and have a break or chill out if needed. Make sure siblings know that is a no go area even if it's just for today.

*Only invite family members that the child has a good relationship with. I have no family members that unintentionally tease or wind DS up. If I did then I simply wouldn't of invited them.

*Accept offers of help. I didn't faff with making sandwiches and popping mini sausage rolls in the oven. I ordered several party platters so I could relax and spend time talking to DS about who was coming and what would be happening. If you decide not to do this option then accept offers of help from family and friends to get things ready.

*Relax. Our children are like emotional sponges. They soak up any emotion we are experiencing or feeling. So if Mum is stressed and anxious then it's likely Junior is going to pick up on it and get stressed and anxious. Stay cool, calm and collected then so will our little birthday boy/girl :)

*After the party, make sure the rest of the day and evening is very low key and stimuli.
Your child is likely to have taken on a lot during the party and may be grateful of having a low noise and stimulation rest of the day. After DS's party we kept the TV and radio off and made sure we kept our voices lowish.

*Lastly, enjoy! Enjoy the day celebrating and playing with your child. As DS is my only child, I mentally mark the day of having been a Mum for X amount of years. It's a lovely feeling.

Hope this gives you some ideas or food for thought when planning and organising your own little Superstar's birthday parties :)

Saturday, 9 May 2015

A&E Play Day - Yes really!!

A while ago, DS gradually became unwell.
He went off his food and became 'just not himself'
Thinking he may of been coming down with a virus or something, I kept a close eye on him and checked we had plenty of Calpol in the medicine cupboard in case it was needed in the next coming days.

The day after, DS was distressed. He was crying and looked angry.
Watching him closely at how he was behaving, I came to the conclusion that he was in pain.

I quickly called 111 for advice and possibly a ambulance as by now he was screaming with pain :(
I was immediately transferred to a nurse who asked me to place my fingers on a certain part of DS tummy which I did. He then screamed even more and crunched over in agony!

I remember screaming down the phone what had happened and how much more pain he was in.
The nurse told me to get him to hospital straightaway as he was showing signs of appendicitis.

Within 1 minute DS was bundled in the car with my Mum in the back with him and I raced the 40 minutes drive to the hospital, no doubt breaking every speed limit along the way! (oops!)

Mum texted Daddy on the way who said that he would be waiting for us when we got there.

Arriving in the hospital, I rushed up to the desk to check him in whilst Daddy cuddled DS and reassured him. We were then shown to a private room and waited sometime to come and examine a very distressed DS.

To cut a long story short, 4 hours later we were still in that room and no-one had been to look at DS.
I was probably seen as a 'lunatic Mother' as I was forever marching up to the desk and asking/demanding/raising my voice at why he hasn't been seen. The answers I kept getting were 'he is next' (he was next for 3 hours but never got seen) and 'we're really busy'

Now I generally admire the hardwork that NHS workers do but I have to say on this occasion, my son was let down by the staff at this hospital.

In the end, we ended up walking out as it was now more the waiting in a small room that was causing DS to be so upset and distressed (I communicated this to them) and we left at 11.30pm with a sleepy DS.

To say I was livid at how ill we had been treated in there would be the understatement of the year!
I think I breathed out fire on the journey back home.
I put DS to bed and then sat at the kitchen table with a cup of tea furious at how they had massively failed DS and how I wasn't going to let this go!

The next day DS still wasn't right so we took him to a Children's hospital which was about a hours drive away. They were fantastic and he was examined within a hour of us arriving :) He was actually examined in a sensory room there which I thought was great!
The Doctor was marvellous, listened to me and as I knew him best told me to tell her if he found anything uncomfortable as she examined him.
I'm really big on giving feedback, so I gave glowing feedback on this visit.
Thankfully serious stuff was ruled out for DS which was a mega relief for us.

Now that I knew DS was okay, I turned my attention to the previous hospital.
I put in a major complaint and requested a meeting.
The thought that another autistic child could possibly go through what my son had gone through filled me with dread and I knew that I couldn't just leave that to happen without even having attempted to do something about it!

The meeting day came. I met with the head of A&E and the head of the PALS.
The meeting went much better than anticpated as both persons were lovely, warm and concerned and yes it was admitted that yes my son had been failed that night.
So I asked how could they assure that something like this wouldn't happen again and I was quite satisfied with the answer.
Another point I raised was that I was concerned that my son would have a negative association with the hospital whereas before this he was fine at coming in.
It was suggested that DS came into the department for a 'fun visit' and a walk around the whole department (where possible of course). I thought this was excellent idea and agreed to it.

I was also asked if I would help the staff make the department autism friendly which I'm only too happy to do :)

Taking DS in again was easy, he seemed to be okay walking through the same doors we did that night when he was in agony which I was really pleased about.

We we're met by the lovely heads of departments and we walked through the bays, DS tried out some of the beds and pressed lots of buttons on machines! :) He loved it!

He was even given his favourite chocolate by a doctor and taken to a bay with lots of toys and a bubble tube!

The only place we couldn't visit was resus because someone was in there.
We met lots of the staff and I asked lots of questions as well as educating them about DS and some common things about children with autism which they seemed to take on board :)

Eventually, it was time to go so we said our goodbye and lots of thank you from me and off we went with a happy boy who I'm confident to say has no reservations about visiting hospitals in the future :)

Saturday, 21 March 2015

Shared Parental Leave....

The first I heard of the goverment's new Shared Parental Leave policy was when an email dropped into my inbox about it.

From April 2015, parents will have greater choice over how they share time off work to care for their child. Shared Parental Leave allows working couples to share up to 50 weeks of leave and 37 weeks of pay in a way that suits their work and family needs. For example, parents can take time off together or they can tag team, stopping and starting leave and returning to work in between if they wish.

I would imagine that this new policy will really be beneficial to some new parents, especially if Mum is the higher earner or if it's a critical time within the workplace.

It's also great that Dad can share care of baby and do his share of the main caregiver which is likely to strengthen a good bond and connection between father and child.

For me personally, this is something that I wouldn't of taken advantage of when DS was born.

For one thing, I exclusively breastfed DS for the first six months of his life so going back to work would of been very difficult.
Of course, I could of expressed my milk for his Dad to give to him but to be honest, I wasn't very good at expressing and would struggle to get a full feed into a bottle. I could do a few ounces really easily and then it would slow down. I remember mentioning to the midwife who said it was normal and that my baby was the best pump I would ever have for my milk.
I used to go to a weekly breastfeeding group where all breastfeeding Mums would meet with our babies (ran by a health visitor who had breastfed her twins). We talked about our boobs and babies all afternoon! We were like a little sisterhood :D I will always remember one new Mum who produced lots and lots of milk - waaay too much milk for her baby so she donated it to the neo-natal at several hospitals for premature babies - how fab is that? :) The unit would come to collect her breastmilk once a month which in that time she had filled her freezer as well as her next door neighbours freezer with milk! haha :)

Another thing was that when I breastfed baby DS, I enjoyed the time we cuddled up for a feed and how it bonded us. I would of struggled to have to limit that special time for us both.

Another reason why I personally wouldn't of used this policy was that after having DS, I was no way mentally ready to start back at work.
I took 1 years maternity leave and even after a year, I wasn't really ready to go back.
I remember being close to tears so many times having to leave him of a morning for the drive to the office and always raced back home to see him!

These were personal reasons to me and my family and as I say I can imagine that this will be very welcomed by many new parents.

More on this

What do you think of the new shared parental leave, is it something that you would consider?