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?

Thursday, 12 March 2015

To my Mum....

With it being Mother's Day this week, I really would like to dedicate this post to my Mum and I will explain exactly why.

Coping with a child with a disability or a condition requires support in some form or other and what better support is there than family support?

Now I completely understand that this isn't a option with every family but in my circumstances, my Mum is my main support.

My Mum has always been my number 1 fan. She has encouraged and supported me in everything I have ever done and every decision I have ever made - even if she didn't personally agree with it.
Thinking back now, there must of been times that she was fearful of a decision I had made but she never ever attempted to talk me out of anything. She just made sure I was aware of all the facts and 'maybe's' and then supported 100% with what option I had decided to go with.

She is my mentor and my 'go to' for advice or if I want to hear someone's else opinion on something - I go to her.
She is my best friend <3

As a child, I always thought all Mums were like mine but he wasn't until I got to around 11 years old and I suddenly realised that no, not all Mum's are like mine!

I've never heard my Mum raise her voice, she is a lady, kind and so so so funny! Her quick wit and comedy is one of the many things I love about her! Growing up, I would often have uncontrollable tears rolling down my face and not being able to breathe through laughter from a funny story of hers!
That still happens now!

I can honestly say she makes me laugh in someway every single day! How fab is that?! :)

Mum was with me when I pushed DS into the world - I could never ever imagine her not being with there with her soft calming influence.

As a new Mum, I remember her commenting how exhausted I was so she would often take me and Baby DS back home and send me to bed to  my old bedroom to sleep whilst she cared for baby DS.
Mum would just bring him up to me for feeds and then take him back again when he was full so I could go back off sleep. Dad would bring me a cup of tea up when they heard me stirring so I could relax for even longer!

As you can imagine, DS loves her. When we stay over, DS insists on sleeping in the same bed as her and from the next room, I can hear them giggling and Mum kissing him and her telling him how much she loves him and how proud he makes her.

Mum has dropped everything so she can be there for me and DS and I know she loves spending time with him. She has even attended courses and workshops on autism to gain a better insight on the condition so she can help DS to develop further - very often, she has been the only grandparent on these courses.

She is a very special person in mine and DS lives. Mum gives us her support, her unconditional love, her friendship and her time and energy. She knows how much we value her and she knows how appreciated she is.

Mum keeps me sane, she keeps DS happy and I just wanted to thank her for being the best Mum consistently for the last 36 years! We are both very lucky and bless to have her.

Wishing all Super Mums like mine a lovely and very happy Mother's Day! :)

Friday, 20 February 2015

Half Term Smiles....

I am always surprised at how fast half term comes around!

I'm not sure if things slow down for me that week or not as my weeks are pretty hectic anyway ( I have no idea how I found time to go to work!)

When I see that I have a 'day off' in my calendar, I get quite excited about that and always arrange for something nice that day - even if it's just a soak in a lovely hot bubble bath midday (this girl knows how to live, eh? ;))

This week has been a busy week too but in a very good way! :)
DS and I have been able to spend lots more time together and with him being able to tolerate a little more noise than he used to, then we've been testing his boundaries by taking him to family restaurants which he has dealt with quite well (relatively quiet ones).

Our highlight this week has been taking him to a gym! :)
There is a disability centre sort of near me which is a great resource and one that DS and I access quite a lot.
Within the centre is a huuggeeeeee gymnasium :)
The staff provide classes from all ranges but unfortunately for us, they are quite structured which DS wouldn't be able to understand or tolerate.
A while back I went along to watch a class and within 2 minutes of watching, I knew that he would struggle in it so I asked if I could hire the gym exclusively for us.

I was met with every kind of 'No/Can't be done/' there was but because I wasn't satisfied with the reasons, some of them even made no sense! I pushed and pushed, I questioned every reason they gave me and even gave them reasons why as a disability centre, they should!
I was willing to pay the staff that had to accompany us as well as the cost of the hire of the gym until they said "yes"! :) :)

So we made a date and a few weeks later we went along (which was this week)
DS broke into a big grin when he realised he was going into the gym which I can't describe how beautiful that is to see and how warm and fuzzy I go inside <3 <3 <3

As I predicted, DS went straight for the trampoline and bounced for ages wearing a big smile.
The staff were great with him! (I've emailed glowing feedback as well as my thanks!)
Even when he climbed onto the big trampoline that he wasn't supposed to go on, the staff surrounded him for safety and allowed him to bounce away which I was both pleased and impressed with!

We spent a full hour in there which went waaaaay too quickly! :(

It's days and moments like these that I know I will remember and cherish forever and when I see his beautiful little face lit up and beaming, then I know that all the fighting, the pushing and the exhaustion has all been worth it! :)

Hope your half term has gone well too.

Monday, 19 January 2015

For the love of Bread....

Well since 2015 DS has just seemed to mature and go from a little boy to a young man practically overnight!

His behaviour seems to have matured and getting him out of bed in the morning is like trying to coax a teenager out! Seriously though, its been breathtaking to see him like this :)

We love weekends, Saturdays is my fave day out of the week because Saturdays are Mummy and DS day! Yaay! :)

Every Saturday, DS and I will huddle up together in my warm huge bed.
I will have a cup of tea, DS will have fresh orange juice.
I will have my laptop and DS will have the ipad and although we are doing our own thing, we are cuddled up happy, content with me kissing his head every 5 minutes!

We will get out of bed probably mid morning then we will do something fun such as go to a play barn or a sensory room or swimming...or if a miserable day and DS doesn't want to go out then we'll play indoors and make dens, play chase, hide 'n' seek......

However this Saturday, I decided to bake some bread :)

I got on with mixing all the ingredients into dough and started to knead.

As I was doing this, I glanced towards the kitchen table and smiled at DS who was sitting eating a snack and watching me knead with interest.

Now DS has never really showed any interest in baking (other than cracking eggs) so I tend to do it when he is at school or busy playing.

DS wandered over to take a closer look at the dough, I asked him to touch it and try kneading it.
He immediately kneaded  and then pushed his half eaten rice cake into the dough! :D

I added a few sunflower seeds but DS was adamant that the whole packet of seeds should go in so they did! (well, who am I to argue with the boss!)

He helped me grease the tin and helped me put the dough into the tin (after he had made holes in it, put it back in the bowl, played with it, stretched it etc....) by this time I was laughing so hard!

He loved playing with it and helping and was so funny that we were both really enjoying it :)

I put the dough to one side and DS asked for a bowl of his own. Intrigued, I handed him one and stood back to watch what he was thinking....

He cracked the rest of the eggs, put all the sugar in as well as the whole block of butter and started to mix (even left the egg shells in there ;) ) by this time I was really laughing and he was laughing because I was! As he was mixing he was saying "put it in and mix" which I was stunned at and more stunned that he knew what to do!

After about a hour of playing, he climbed down from the worktop covered in flour, eggs, sugar and toddled off. The kitchen looked like a food fight had happened but I couldn't stop smiling at how much fun we both had had.
As I started to brush up the seeds and rest of the ingredients from the floor I decided that I am never going to bake again without him.

In theory, my bloomer bread with sunflower seeds should of been a absolute flop but it turned out extremely well and tasted delicious!

Since new year, DS is just 'wowing' us all and he loves Mummy and DS day just as much as me!
Just when I think I couldn't be any prouder of him suddenly I am!

That sensory hour just cost me some eggs, flour and sugar and some time tidying and cleaning up afterwards but it was just so worth it for the enjoyment he got from it.

Can't wait to see what this little Superstar 'wows' us with next.....

Sunday, 21 December 2014

All I want for Christmas....

I love Christmas for its magic and the lovely generous Competitions I have come across during the festive season :)

The fabulous M&Co are running a blogger competition about my wishlist for Christ mas and I felt I had to oblige! (of course)

As a parent of a child with autism, if you're anything like me then you're probably stressing over wether 'Santa' has got your little one enough or in my case too much which could possibly overwhelm him that I forget about little old me!

For a change, I thought it would be nice for me to drop some (strong) hints for what I would like! ;)

Here are a few things that I would be simply thrilled to find wrapped under the Christmas tree. (hint number 1)

1. LBD £44.50 - Every girl needs a LBD and I love the sophisication of this one! This would be perfect for a Christmas & New Year party which I tend to go a bit 'all out for' 

2. Beautiful Underwear £16.00 -  I will admit that I am a pretty underwear addict!
Like a magpie, I'm drawn to pretty bra and knicker sets and have a drawer full! 
I absolutely love this due to the neutral colour not to mention the gorgeous pearl detail! I must have these Santa!

3. Matching briefs £7

4. Duvet Set £22 -  I didn't realise that M&Co did homeware but when I spotted this festive little beauty, I was sold!
I love clean, fresh bedding and this ticks all the boxes. The fact that it is also reverse the pattern is a added bonus!

5. Pinecone Heart Wreath £7 - I love nature and decorating my home with unusual things so it comes as no surprise that this little beauty caught my eye. I love that it glistens and I would probably pretend to my friends that I crafted it up myself during a afternoon! hahaha!

My wishlist totals £96.50

Tuesday, 16 December 2014

O' Christmas Tree, O' Christmas Tree....

So the magical time of Christmas is upon us once again.

It's this time of year that my mind is always cast back to the Christmas of 1985.

I was 5 years old and Christmases were my life! I would think about Christmas even at the height of Summer and would often say to my Mum on a hot day whilst sucking on a ice lolly what I would like for Christmas! Mum would mutter something like "okay love, you'll have to see what Father Christmas brings" whilst turning the page of her magazine without looking up from it.

Christmas was lovely as a child and  I have very fond memories of my brother and me creeping down the stairs in pitch black darkness to see if 'he had been' but the Christmas of 1985 was something pretty amazing!

That Christmas I was greeted with a huge three storey Sindy house complete with furniture, car and caravan! I couldn't believe that these wonderful toys were mine! I felt like there should of been twinkling lights behind it or that I had just won the bonus prize of a gameshow that I sometimes watch on our oak effect bulky TV set! (remember we're in the 80's here!)

I was absolutely doll mad so this was heaven to me! The house was that big that I needed to stand on a chair to play with Sindy on the roof terrace and the top floor of the house. This was by far the best toy I had ever had and  gasping to my 11 year old brother how great it was, he responded with a grunt whilst he excitedly put his new Adam Ant record on his new record player followed by some 'Puss Cat, Puss Cat' lyrics blaring out of it!

That Sindy house proved to be a great investment by 'Father Christmas' as I played with it for years and years. Of course more Sindy dolls were added to collection over time followed by Barbie too (I never did get Ken as my Dad didn't think it was ethical! hahaha) until one day whilst playing I realised that I could see the roof terrace. I wasn't standing on anything and I could actually see the top of the house! That's how many years I played with it.

I think there may have been some slight concern at how long I played with dolls but nothing was ever said to me, it's just something I sensed. I remember breaking up from primary school and was going to be starting High School in the following September. Suddenly I wasn't comfortable to continue to play with them seeing as I was nearly a 'High Schooler' and plus my friends seemed to have moved on from them so the decision was made by myself to put them away.

As a parent and as someone who loves Christmas I would love to go Christmas mad at home!
However with DS, we have to play Christmas down a little as it can be way too much of a sensory overload for him.
In the early years, I struggled a little with this. As a big Christmas fan, I use to feel like I had a load of Christmas bubbles inside me wanting to burst out but I had to continually fight to keep them inside.
Of course, now that we have low key Christmas, I find it much easier and I've actually become to prefer it. (could also be an age thing!!!!)

DS has taken a very big interest in our Christmas tree this year resulting in him reluctant to leave it to go to school or bed!
Last night, DS and I camped next to the Christmas tree and within minutes his eyes were closed.....which makes me think "Oh no! What have I started"??!
Fingers crossed that I do manage to sleep in my own bed sometime during December! :):)

Wishing all my readers and families a lovely Christmas regardless of how it's celebrated!

Merry Christmas! This post is my entry into the Tots100/Little Tikes 12 Days of Christmas competition