Monday, 27 March 2017

Finally A Good Day For #PurpleDay

Not only was yesterday Mother's Day it was also #PurpleDay. A worldwide day to raise awareness and money for people with Epilepsy.

Since Grayson overcame the death sentence he was given last year he has been trying his absolute hardest to come back from living with so many seizures. It has not been easy as some of the damage will never correct itself.

Up until now when we leave the house at weekends or in the holidays he is barely ever awake, his sleep at night is massively lacking and unfortunately his Sensory Processing Disorder has only been heightened by the Epilepsy drug that saved his life.

So to deal with that he goes to sleep when out and about, a coping mechanism his brain has decided works best.

But yesterday for Mothers Day and Purple day he stayed awake, for nearly the whole time we were out, he sat and ate lunch with us in the cafe and then after some iPad whilst his brother and sister played in a local gardens he decided to even take a short walk out of his wheels.

I do panic the whole time he is out, especially after another head injury at school last week, but Daddy held on tight and he did brilliantly, even letting go to go and feel the leaves, something I have not seen him do for over 18 months.

It may have only lasted minutes but that was his way of making my day special and for him to say once again to Epilepsy - YOU WILL NOT WIN NOW!

Photo Taken By Ash @ The Ideal Scenario

Saturday, 11 February 2017

Saving The Day And Money, Asda Day And Night Pants

I can not believe I have been changing nappies for over 8 years. In that time I have changed in excess of 18000 nappies for Grayson alone. 

I have come to think of myself as a little of a nappy expert. 

We have used nearly every brand on the market at one time or another. Plus some which aren't. I've used everything from newborn to pull-ups and all in between.  

What I have learnt over that time is 

1. They cost a small fortune, we all can't wait for that saving on our food shopping bill each week once they are potty trained. 
2. The cheapest nappies are not always too good but at the same time the most expensive are not always the best. 
3. Do buy what works for each child individually. No matter the cost. 
4. Buy in bulk, it does save money. 
5. You will at one point always run out of nappies and have to use a towel, tissue, something that works whilst you get to a shop.

Grayson thankfully is funded 70% of his daily nappy usage from the NHS. But that means the other 30% is funded by us, now considering he uses roughly 2500 nappies a year, that is a lot of nappies we have to buy. When we never thought we would be. 

Up until a year ago it was not too much of a problem, Grayson is quite tiny compared to an average 8 year old so I would head and buy 6+ Little Angels nappies (by far my favourite brand). But then as he grew and gained weight that was no longer an option. 

So I headed to an incontinence website and found the nappies Grayson has from the NHS. It all was very easy until I saw the cost and worked out how much that extra 30% would be, over £400 a year. 

There had to be an alternative!

That's when Asda kindly agreed to send me some of their new Day & Night Pants
Aimed at children who still need something to help build their confidence as they learn to stay dry, actually quite a normal occurrence in children going into to school age. 

Asda Day and Night Pants Review for Special Needs Children

They wondered if the Day and Night pants could work for children like Grayson. 

What a lot of people don't realise is not all disabled children are funded nappies from the NHS, so not only was I happy to test them for Grayson, but I wanted to see how they would for children in our network who are trying to make the transition to potty training just at an older age. 

The first thing I noticed was how the Pants had the usual Little Angels quality I have come to love. Some cheaper nappies can feel quite harsh on children's skin, these feel just as their younger nappies do, nice and soft. The elasticity is in all the right places. I have found some pull ups in the past are not very snug around the legs and this can cause them to leak, this is not the case, the Day and Night Pants come with the double flap system. 

A review of Asda Day and Night Pants for use with Special Needs Children

So quality wise they were good, but what about cost ? Would they show me a saving from Grayson's special needs nappies ?

Well for the same 30% of nappies  I would pay around £290. That's over £100 saving and trust me for us every penny is really needed. 

I also like the fact I do not have to worry about remembering to order them online, I just have to head to my local Asda. 

For me Asda could market these to special needs families, I certainly know a few who are using them and are pleased that the option is there, but we have all agreed being in only packs of 10 is not ideal. 
I understand that this maybe enough for many families who are using them at the later stages of training but I am sure packs of say 30 with a slight bulk discount would still sell just as well and certainly would make it better for families like mine. 

But either way they will be going in my trolley each week.

Do let me know if you give them a try, I would love to know how you get on.

*PR Samples

Friday, 20 January 2017

Matchstick Monkey, Can It Work For Aggressive Chewers ??

So for those of you that don't have them, I should explain what an Aggressive Mouther/Chewer is ?

For many disabled children Mouthing/Chewing is just a form of stimming. They need the sensory feedback that comes from chewing non-edible objects.

It is not something they can control, for Grayson if he didn't have a toy or fabric to chew he will find something else, sometimes furniture, worst case he has bitten through his fingers.

Every year Ashley and I spend approximately £250/300 on toys for Grayson to chew, it is not something we can stop so we just like to give him the safest options. Over the years Grayson flits between wanting to chew fabrics or toys so we always have many on hand.

For years Sophie Le Giraffe was a favourite but he can chew through those within a week, it just isn't cost effective.

There are many Special Needs chew toys on the market, some he likes, some don't last and some are just too hard.

Like a baby wants, it needs to have a certain amount of flexibility for feedback but also not to break his teeth.

We have spent the past few months with him using swim toys, they work well but I wont lie they are not discreet and that is quite important for a lot of Special Needs families when out and about.

Matchstick Monkey 

So when I heard of a new British teething toy called Matchstick Monkey I had to give it a try.

Full review of Matchstick Monkey teething toy for special needs children

They kindly sent us a grey monkey out, although the product is designed with teething babies in mind they were very interested to hear how we would get on from different perspective.

Why a monkey?
My daughter has always been a little bit obsessed with monkeys. She is always carrying one around, small, tall, thin, fat - if it is a monkey she would love it. Having small hands it was very important to make something easy to hold. This is when the Matchstick (skinny) part of Matchstick Monkey was born. The perfect teething toy / applicator for pain relief products Made from soft, safe silicone with handles that are thin enough for your little ones to hold and use from a young age Perfect for small hands looking for something to hold with ease.

 Our Thoughts

When I first opened the packaging I loved the size, not too small that he could choke but not too big it was in your face. It is a modern looking toy, up with the times, designed perfectly for being held and not too soft.

I gave it to Grayson and initially he chucked it away. Then I left it by the TV (his favourite place to stand) and within 5 minutes it was in his mouth.

I have shared a few times over on his Instagram Stories just how much he loves it. He not only stims with it orally (he loves the bobbly bit designed for teething gel application best), but he also loves it for hand stims, constantly revolving it between his hands and because it is made of lovely soft silicone it doesn't rub on his skin.

Review of Matchstick Monkey teething toy at Raising a Superhero

Grayson has been mouthing the Matchstick Monkey now for over a month and not one bit of damage, honestly I am HUGELY shocked, I was worried it would not last with his grown up teeth but I was wrong. What I also love is that if he drops it just put in the dishwasher or give it a wash and good as new.

As a Mummy to a 8 year old I love the design for not only babies but also for grown Special Needs Children, it is very discreet and can come in muted tones or nice bright colours depending on your choice.We shall be buying the red as it will help with Grayson's vision problems.

Matchstick Monkey teething toys review from Innocent Charms Chats

No Worrying

There is no escaping the news at the moment if you are a parent with teething toys such as Sophie Le Giraffe holding mould. 
If you are worried then Matchstick Monkey is the way to go, the toy is solid silicone with no holes for dribble to get in, thus no risk of mould near your children, as I said it is also super easy to keep clean.

For £10 we love the Matchstick Monkey and I will be recommending them to Special Needs families as well as friends with young babies, it does everything and more in what you want from a teething toy.

*PR Sample

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.