Tuesday, 20 December 2016

Afternoon Tea With Father Christmas At Wyevale

I am not sure we have ever taken Grayson to really see Father Christmas since he was little.

It was always the logistics of it, the fact many Winters we have been in hospital, that the toy given would not be suitable and honestly as he really didn't like the whole process and would get stressed.

So when Wyevale contacted us to have Afternoon Tea with Father Christmas initially I decided not to take Grayson, then I thought about it and had a read of their website and they were priding themselves on being an experience for ALL to enjoy.

So with that I booked a ticket for Grayson and I am so over the moon we did.

In advance I was asked if we needed  wheelchair access and I told them it would be needed for a child to sit at the table. When we arrived there was ample space and not only that they checked that the table position would work for Grayson for the whole experience of the afternoon, telling us all the plans to make sure nothing would be too much or unsettling.

Grayson was actually asleep for the first half hour or more so when his food came out it was kindly taken back to the kitchen and when he woke they simply brought it still nice and warm. Nothing was too much trouble, we asked for a bowl that was done, extra butter, a plateful was brought out,they even checked they could find suitable textures of foods for him to enjoy.

When Santa arrived he spent extra time talking to Grayson, understanding that Grayson could not respond, but still giving him the time to be part of his day.

When it came time for Grayson to go up and meet Santa they made sure it was as easy as it could be. They made space to bring up his wheelchair, but in true Superhero style he strolled up and sat with the big guy himself, even having a tug of his beard.

After every child had been seen Wyevale make sure to allow enough time for every family to come back up and have some photos with Father Christmas, it was lovely to not feel rushed or pressured as we tried to get that perfect family shot.

Final Thoughts

If you are looking for an experience to see Father Christmas that works for all children then I seriously suggest Wyevale. You can either book Breakfast or Afternoon Tea.

The toys were suitable for all ages from Newborn to 10 and what we liked even more was that the children get to choose their present from Santa's sack so Grayson did not end up with a toy non suitable. He got the softest little bunny as he currently loves to have a cuddle.

Wyevale even said that we could contact in advance to notify them of a toy that may work, how is that for a perfect day out.

*PR Sample

Wednesday, 7 September 2016

Sending An 8th Month Old To School...

It's that time of year again, all the kids are heading back to school and our Superhero is actually well enough to return.

Addison, Grayson's sister returned to Year 1 on Monday, I had the most awful butterflies, sending them to school I find so hard, but after a while they subsided, as lets be honest she will be OK and if she wasn't she would make pretty sure I knew about it when she got home.

In fact she did, she rung me at work so excited to tell me of all her adventures, it was wonderful.

Today though wont be like that, today I send my Superhero for his fourth year at school, today I send a 7 year old with a corrected age of 8 months old.

Think about that for a minute, think back to your children when they were this age and imagine sending them off for 6 hours a day completely out of your care.

It doesn't feel right does it ? Even now 4 years on it doesn't for me either, today I am thankfully at work, it allows me to stop panicking just a little, it stops me worrying if he is crying and wishing he was at home, it stops me worrying if he will fall over and get hurt, it stops me worrying if he will eat enough, or will the person feeding him understand his tells as it is not like he can tell her, well I lie I am still worrying.

The school try to help, I am not the norm, some of the parents don't worry but I have small panic attacks, they let us come in yesterday and see his new classroom, meet the 7 members of staff who will be with him, only one is not new to him. They showed us his new playground, it is special but noisy so I worry how he will do.
They share with us their plans, they listen to my worries and in theory it will go ok.

Grayson's school have changed their set up, Grayson is now in a class of children similar in ability, a class of at least 9, ranging in age from 7 to 10, hopefully that will work, hopefully he will feel at peace with them all and hopefully the ladies who look after him will build a bond with him and see that he truly is a beautiful boy on the inside and out.

First days are hard, for everyone, not just the kiddies.

First day at Special Needs School

Friday, 26 August 2016

4 Years Ago Today, I Had My Head Shaved....

I cannot believe it has been 4 years since the first Grayson's Great Funday.

I never forget coming up with the idea 5 years ago to shave all my hair off.

I wanted to raise awareness for Grayson and SWAN UK, to show the world that there are a spectrum of children out there without a Diagnosis, whose families spend every day living a "What next ?" life.

When I spoke to some of my online friends about it they suggested making it more than just shaving my head, I should invite people to come see and that was when Grayson's Great Funday was born.

I remember 4 years ago doing my hair for the last time, it was a mammoth task so I did it the night before, I took one last picture, shared online and the support I received was unimaginable.

I was not prepared for how many people would turn up on the day, it was one of the proudest days of my life.

Nearly 200 people turned up to watch my hair be shaved from my head, the papers came and asked questions, learnt more about SWAN children, people laughed, bounced on bouncy castles, had their faces painted and just enjoyed a good FAMILY DAY OUT.

Then at 1pm we got ready, I didn't feel nervous at all, I had butterflies in my stomach from excitement and more because I knew I would have to say some words in front of everyone.

My parents did not want me to do it, but no one could understand I think just how important it was for me.

After over 3 years of being Grayson's Mum it was so important, my way of showing him (even though he didn't understand) that I would do anything for him, anything to show the world how truly amazing he is/was.
I think if I am truly honest now, looking back, it was a release for me too, a way of excepting who he was and the life that had been chosen for us all.

My hair was so long and thick that we couldn't put it in one ponytail per the request of Little Princess Trust (who I sent my hair too), instead we put it in 4 and then people paid between £50/100 to cut one of those ponytails off.

Then my lovely friend Emily took the clippers to my hair, it was amazing how long it took, as I said I had a crazy amount of hair, but it also felt like a big weight was being lifted off, literally and figuratively.

It followed with people touching my head, taking photos, hugs and so much love, I finally after half hour snuck away to the toilet to have my first look, for a second my breath was taken away, I looked weird, it wasn't my reflection, I had always had so much hair and now this person in front of me felt so alien. Then as quick as that I smiled, this was a new me.

It changed me shaving my head, as people, women especially we hide behind our hair, using it like a comfort blanket, mine was now all gone, I was exposed to the world and it was great. I had a new found confidence, I felt beautiful and so proud of what I had done.

With the help of family and friends we raised £3,200 that day for SWAN UK, Grayson and Cerebra, an amazing amount of money, what we did also though was make the front page of the papers and had interviews across local radios, we raised so much awareness, it introduced me to more people in our situation and it let families know that SWAN UK existed.

Grayson's Great Funday did run for a second year but then due to Grayson's detrition in 2015 we had to cancel future dates. But I think now is the time to plan something new, it's time for me to show the world once again that awareness is key.

So thoughts another Funday or a Superhero Ball.....

Wednesday, 29 June 2016

The Tubie Diaries

Next week Grayson will return to hospital in London for an operation, we don't know yet whether we will be in for 3 days or 13 but what we do know is when he leaves he will have a PEG feeding tube.

What's a PEG ?

Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate (for example, because of dysphagia or sedation).

This will not at present be Grayson's only source of food supply, we are still going to be feeding him orally, but the tube is likely to be used each and every day.Back in January when the decision was made that he needed a tube just to keep his organs from failing I started a series of videos on YouTube called the Tube Diaries, part 2 has just gone live today and is below.

We thought this may help someone in our situation at a later date, as well as give an insight to the people on line who continue to love and care for Grayson.

I would love to hear from families who have tubes with any tips or tricks I need to know, I think parents always seem to know more than Doctors and Nurses.

I am also thinking of doing a Q&A video for anyone who may have that burning question, if you do please leave them below or ask me on line.

Thanks for the continued support.

Tuesday, 19 April 2016

Product Put To The Test // Hamster Bags

The one thing we all know is a massive problem when you go out and about with a child in a Wheelchair/Special Needs Pushchair is storage for all the things they need.

Grayson is currently in the Ormesa Bug and it comes with no storage as standard, yet he comes with needing a huge list of things including

  • Nappies & Wipes
  • Change of Clothes
  • Blanket
  • Chew Toys and Fabric Toys
  • iPad
  • Meds
  • Food
  • Drink
  • Bibs
and more and this is before his feeding tube is installed when then we will have a pump and all the other gumph to go with it.

So when I was contacted by Hamster Bags to see if there product would be of any use I jumped at the chance. Initially they sent them for me to use on Deacon's Pushchair (review coming on Innocent Charms Chats next week) but I was more intrigued how they would work for Grayson, let's be honest he has more stuff.

They simply are bloody brilliant. They fit any Pushchair, no lies, I have 4 in my house and they work on all, I have also tried them on a couple of other SN ones and they fit, the only thing I haven't got to test them on is a standard wheelchair.

They Velcro on in 3 places and then you simply un clip when you want to take off and the Velcro loops stay on. 

They hold so much, we used them whilst away on holiday last week and I did not take Grayson's usual huge backpack just these as they can also be un clipped and you can carry over your shoulder like a bag.

I had all of the above in ours, plus 2 lightweight jackets for the other 2 and a change of clothes for Deacon.

They are totally wipe clean and have several zip pockets so you can put things like you car keys, or the emergency bib somewhere easy to find.

I can not say a bad word against them, what more they are available in 3 colours and for a pair are only £24.99 including FREE P&P.

I do not think Hamster Bags had ever thought about them being used for Special Needs families, but that is the beauty sometimes isn't it that mainstream products work even better for us.

Make sure you head over and check out Innocent Charms Chats this week as there will be a review and even a chance to win a pair of Hamster Bags there.

Raising A Superhero...

Back in 2009 when we realised our life with Grayson was not going to be the norm we felt so alone. Family would try to support us but really no one knew what it felt like to be a parent in this situation.

I turned to the Internet on many occasions looking for help and guidance, it was not overly easy to find.

Fast forward 7 years and the Internet has become a place parents of Special Needs children can find much comfort and support, Facebook for all it's negatives has a massive plus in that it allows groups to be set up in a blink of an eye for people to come together and share stories, to feel less alone, especially in the early hours when you really feel helpless and like there is no end in site.

I have been there, I won't lie alot of the time I still am, I am not sure the journey ever gets any easier, just easier to live with. You find ways of coping, it becomes your norm and you find people to help support you through that new normal.

Grayson still remains Undiagnosed of his underlying condition at 7, not for lack of trying, but by all accounts the top Doctors in the UK say he is Unique, the only child so far in Europe like him.

SWAN UK made life easier for us in that we found other families back in 2011 who like us have unique children, back then there were not many of us, not because there are not many undiagnosed children in the UK but because SWAN was still not heard of.

Thankfully in the past few years with the help of the families and great advertisement they are now helping so many families in the journey and that is amazing.

So why Raising A Superhero - well it gives Ashley (Grayson's Dad & my better half) and I somewhere to vent, to chat about our journey as a Special Needs parent without getting lost in my main blog between bedlinen and the newest fashion trend.

It gives us somewhere to share with you the things we have learnt in our 7 years, as honestly the best advice I have ever recieved has been from other parents.

But also we want to make RAS a place where other families can talk, raise awareness, vent, scream about their journeys too, as all of ours are individual, no disability is ever  to small or non important.

We will also have a few experts coming by and sharing their little helpful insights, as well as some people we have met along the way who have been touched by Grayson and other Superheroes like him.

We want it to be the place you can come to for info, advice and maybe something to laugh to.

Raising A Superhero is not easy, actually raising a child is not easy, but that doesn't mean you can't find ways to make it easier and more fun.