Reminders of “Come What May”

Yet again Facebook had thrown up another one of those “On This Day” pictures. Yet again my emotions were mixed.

The now year old photo is a beautiful one. A photograph capturing a lovely moment between Father and Son. The Photograph was taken by myself and at the time exact time I snapped the shot I was truly all wrapped up in the emotion of the moment.

It is just that looking back at the photo it reminds me why this photo was taken, not ‘Why did i take a beautiful photo next to a beautiful fountain’ I mean it reminds me why we were even there?

The reality is that this photograph was taken in Regents Park. We had decided to take some time out and have a walk around the park to try to clear our heads after a very long and stressful hospital appointment. The appointment was at The Royal Orthopaedic Hospital London. We were there due to a newly discovered ‘problem’ had shown up via Owen’s annual hip x-ray.

The majority of children with Cerebral Palsy develop spasticity, in which their muscles tighten involuntarily, causing stiffness. Spasticity in the muscles around the hip places abnormal forces on the hip-joint, eventually causing the hip to dislocate from the socket. It is therefore very common for children with Cerebral Palsy to develop hip disorders over time.

Owen’s left hip wasn’t fully dislocated but had moved slightly out of the joint. This is  called “Hip Subluxation” also called a “Partial Dislocation”. 20171026_164604410829793.pngAfter a day of waiting for a more senior consultant to see us it was decided Botox, or a lesser operation to release the tendons would not be beneficial. Major surgery would most likely be needed. Owen was not in pain and at the time was not affecting his quality of life so they and we agreed to leave it for now as the hip was only slightly “Out” and it may well just stay in the same, slightly “Out” position. They said major surgery is on the cards but not at that present time.

In ambulatory children, hip dislocation can be a detriment to walking. In non-ambulatory children, sitting balance, skin breakdown and diaperring can be hindered by hip dislocation.
We have towards the end of this current year noticed a difference in Owen regarding his tightness in his leg muscles, his legs are crossing more and he just doesn’t look symmetrical. We are really fearful what our next upcoming ‘hip’ appointment will reveal. We are trying to prepare ourselves for the likely fact that Owen will need major surgery to correct this, But I am currently also not trying to think too much about it as it sends me in a complete panic.20171026_1650381087182585.png

This year of waiting, hoping and seeing has been hard. Owen is non verbal and we worry we will miss him giving us clue that he is in pain. Every time he has a period of unexplained crying or seems in pain I fear it is his hips. Recently he has quite a lot of illnesses, At the start of them I never really know what they are about, but I am always on full alert whether he is in pain due to his hips or whether his bowel malrotation has re-appeared (despite having surgery to fix it). It is strangely a relief that it was the beginnings of another familiar chest infection that made him so upset. The feeling of relief is short-lived as you then start to panic that this chest infection will be THE bad one. Despite Owen being out of school more than in school this last term with sickness bugs, chest infections and feeding issues we do feel extremely lucky that all this was treatable at home, especially after hearing some recent really sad news. We are always forever thankful and never take anything for granted.20171026_164919160483415.pngHaving said that the thought of having another hospital stay is playing heavily on my mind. It is a fear that never goes away. Living with the thought that at any moment for many different reasons you child could end up in hospital means you can never fully be free.

I realise to some this blog post is almost a year too late, I have been sitting on my worries regarding his hips for a year now. I sometimes, when I have no answers find it is easier just to keep your worries to yourself. I almost feel like by not telling people I am protecting them. The fact I may need support and comfort does not come into it. My whole focus is Owen and trying to do the best for him.  I hope what ever the outcome of the very near next appointment, it will be what is best for Owen. I fear the truth of what that may mean for him, But I know whatever it maybe I will be by his side every step of the way.  “Come What May”

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Why ASDA Know That Mum’s Are Always Right

So if you follow my Facebook page you will have seen I recently posted a little tease about an upcoming Changing Place local to me.

Well here I can reveal the location of this Changing Place will be…

(Incase you haven’t guessed from my title)

ASDA Watford!!!!!!

As a mother of four, Supermarket shopping is no easy task. This is made harder with a disabled child and a complete lack of facilities. For both of those reasons this is why I always do grocery shopping online. Nowadays Supermarkets now are like mini shopping centres. You can buy anything from bread and milk, to TV’s and PC’s all while picking up a brand new outfit or having a bite to eat in their cafes. Being restricted to just shopping online or just limited to popping in means you get to miss out on so much of what Supermarkets have to offer and in turn they miss out on your cash.

So how did it all come about???

Over a year ago, I contacted ASDA and sent them my usual information trying to ‘convince’ ASDA that toilet floors are not good enough and Changing Places is far better. ASDA were very pleasant to work with and took my views as a parent/carer on board. ASDA said they were “Very keen” to install Changing Places and were planning to “Roll them out across the country.” ASDA did however state they could not tell me the timeline of when my local store would be getting one.

Fast forward to last month. I went to my local ASDA with my children including my disabled son to get the children’s last minutes bits for school. Let’s just say it didn’t go to plan and we ended up just buying whatever was in the basket and rushing home.

A few weeks after I noticed ASDA were doing alot of building work so I emailed ASDA to ask if they were putting in a Changing Place facility also explaining about my previous trip which left us exiting early. I got the reply they were refreshing the toilets but NO Changing Places were to be installed. Not happy with this, I emailed a formal complaint to the CEO.

I very promptly recieved a reply. It was rather shocking to read the reason why they were not installing Changing Places. It was because The Official Changing Place Campaign advised them against doing so. Can you believe it? ASDA told me they were advised as Watford had a number of Changing Places in town
one being 1.2 miles away ASDA didn’t need to install. How can a campaign like Changing Places, whose sole purpose is to get Changing Places installed, give such damming advice?

As a parent/carer campaigner for Changing Places. I have helped get Changing Places in my local town of Watford Hertfordshire. These include Warner Bros Studio – Harry Potter Tour, Watford Football Club and Cassiobury Park. I do this because I believe Changing Places should be as readily available as much as your standard disabled toilets. I put all of my very rare bits of spare time into campaigning to get businesses, attractions and just basically anywhere suitable to install. I just feel so deflated and that all my previous efforts were going to waste.

I wish I can say this is the first time this has happened, but sadly not. I have had the same response from Tesco and John Lewis. I also know others that have been told the same.

Luckily for me, despite Changing Places advising otherwise, ASDA listened to myself a parent/carer and a valued customer and decided to go against advice from Changing Places and just do the right thing. ASDA now are going to install Changing Places as part of the current building works.

Campaigning for Changing Places takes so much time and hard work. I often think about giving up, But the bottom line is (no pun intended) my son needs them and I can’t just sit back and do nothing, especially after I have seen the positive results of my hard work. So for now, I will take a little break from campaigning while I think what my next steps will be and just look forward to the opening of yet another Changing Place for my town which I know will not only be a great benefit for my son but for the wider community.

I am very grateful that ASDA for just doing “The Right Thing”. ASDA showed a great “Commitment to customer service”

“Making sure we have the correct facilities in place to meet all of out customers needs”

ASDA listened to one Mothers voice whose son needs these facilities, who lives with the upsetting and degrading effects of not being able to access such facilities on a day to day basis. They listened to a Mother over the so-called ‘experts’. You can’t ask for more than that. I hope I have not put any campaigners off from keeping up with their hard work. I hope I have still managed to encourage other Parent/Carers also ask for the “Correct Facilities” despite my difficulties.

Inclusion and Accessibility should not be seen as a extra but as a given.

NHS Nascot Lawn Respite Children’s Respite centre ‘Saved’ as Lennon’s Legacy.

 

SAVE NHS NASCOT LAWN CHILDRENS RESPITE SERVICE’S PRESS RELEASE

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NHS Nascot Lawn Respite Children’s Respite centre ‘Saved’ as Lennon’s Legacy.
On 28th September 2017, parents of NHS Nascot Lawn children received the welcome news that Herts Valley Clinical Commissioning Group has set aside their decision to cease funding respite service at NHS Nascot Lawn.
Lennon Ruffles was a patient of Nascot Lawn who sadly died on 3rd August 2017. Lennon and his family played a vital part in campaign to ‘Save Nascot Lawn’. Lennon’s Mum, Nikki said: “We are overwhelmed by the news this morning, had Lennon been able to communicate, his dying wish would have been for Nascot Lawn to stay open, for all his friends.”
A judicial review was due to take place at The High Court, Holburn on 3rd and 4th October. At the judicial review, the High Court was due to decide whether or not the decision made by Herts Valley Clinical Commissioning Group to withdraw the funding to NHS Nascot Lawn had been taken legally.
Irwin Mitchell, the legal team acting on behalf of parents, are still working through an agreement with Herts Valley Clinical Commissioning Group’s legal team, but the commissioning group has confirmed that they will now carry out full family and public consultations before they make any decisions about funding in the future.
Parents received letters back in June informing them of Herts Valleys Clinical Commissioning Group’s  decision to withdraw funding to NHS Nascot Lawn and that the respite centre would be due to close on 31st October 2017.
Since then, parents launched a campaign to ‘Save NHS Nascot Lawn’ which gained considerable media support from both radio and television stations, including the BBC and ITV and a great deal of newspaper coverage from local newspapers including The Watford Observer and Herts Advertisers. Parents also received backing from local councillors, including Mark Watkin, Nigel Bell, Asif Khan and Sara Bedford.
15,000 members of the public backed the campaign through a public petition with many more sending messages of support on social media. The campaign was even mentioned in The House Of Lords by Baroness Sal Brinton, who went on to arrange a meeting with parents, Lord O’Shaughnessy, the Health Minister and herself at the Department of Health.
Parents would like to thank everyone involved in helping to turn around Herts Valleys Clinical Commissioning Group’s decision to cease funding. They also wish to express their excitement and happiness at the decision, but do so cautiously. Parents have still not heard a response from Herts Community Trust – the service provider, and the staff at Nascot Lawn are still unaware of where they currently stand. Herts Valley Clinical Commissioning Group can of course now undertake public consultation in regards to the position of NHS Nascot Lawn, and if and when that happens, the campaign will continue to need as much support as possible.

#SaveNascot #NascotArmy #ParentPower #LennonsLegacy

Please keep signing and sharing our petition below

https://www.change.org/p/save-nhs-nascot-lawn-children-s-respite-services?recruiter=224336991&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

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Let Me Play – A Summer Of Inclusive Fun

Looking outside it is very clear, that unfortunately Summer is now well and truly over. The early dark evenings have arrived, I have swapped slip on shoes for boots. Ice cold drinks for Steamy Hot Chocolate, BUT before we enter the full swing of the Autmnal months I thought i had better get in there quick with a blog that updated you all on all things inclusive play that I have been working on and as a family we have been enjoying through the Summer months.

As a family we are always looking at ways to make sure Owen is fully included in every day family life as possible.  We are just like any other ‘normal’  family (hate the word Normal… whose normal anyway) We love Family days out together, Be it to The Zoo, Seaside or just to one of our Local Parks.

I have always felt lucky living in my home town of Watford. Many of our parks are of a high standard. Growing up here and also now as a Mother of four I have spent more hours than I could even count having fun in parks.

Owen is a massive Thrill seeker, his favourite piece of equipment at our local park is the Nest Swing. You should hear his squeals of delight mixed with his proper belly laugh as you push him to go very high and very fast. (Much to the worry of his Twin sister Florence) The unfortunate thing is, that this is very popular piece of equipment especially with the older children, so queues often form while Owen is having his much loved turn. Once Owen has had his ‘go’ There is not much else for Owen to do.

In the heart of Watford is the much loved Cassiobury Park. http://cassioburypark.info/  Cassiobury Park has played a big part of my childhood. It is lovely to see that it has become a big part of all of my children’s childhoods too.16681749_10210372724147746_7483984388105075141_n

As you may or may not be aware, Cassiobury park has undergone a big £6.5million restoration project.

The project included;
*Renovating the lovely Cha Cha Cha Café, We have lots of lovely times here. I fondly remember bringing Lilly each week here for her Hartbeeps Music and Movement Class. Also who doesn’t love a Latte while watching there kids play.

*Moving a bandstand from the top of the town centre back to it original position in the park.

* Renovating the Paddling Pools and building a great big Hub Building which now will include a Changing Places Toilet.

* Adding some new Inclusive play equipment to the main park.16864136_10210372726947816_5322957120991351166_n

The above did not arrive with out a little work and push in the right direction

Starting from the early stages of the planning and building more than a year ago. I have constantly been in contact with Watford Borough Council to raise awareness of the need for ALL parks to become Fully Inclusive. My first response prompotted me to believe much work was needed, Watford Council replied stating that  “ALL Watford Parks are already Fully Accessible”

Now seems to perfect time to explain the important difference between Fully Accessible and Fully Inclusive, As the two are totally different things.

 Fully Accessible Playground; All parts of the play space can be reached or entered into. For example the playground surface should be one that a wheelchair or walker can move on.
What this means for us is I can push Owen easily around the park. So you can see why just being accessible alone is just not good enough as what fun to be had, being pushed around watching all the other children have fun and play.
 A Fully Inclusive playground takes in account not only physical equipment but incorporates the emotional and social benefits of play. These types of playgrounds take into account children with physical disabilities as well as learning or developmental disabilities.  In additional to accessible floor surfaces you may find Accessible Swings, Wheelchair Swings, Play Panels, Sensory Walls, and Sensory Gardens

According to Landscape Structures, a leading manufacture of inclusive playground equipment, an inclusive playground “… can offer many opportunities for children to further develop physical, cognitive, sensory and social skills. An Inclusive design includes a balance of play experiences to build all these skills.”

So you can see why I believe a Fully Inclusive Playground is much more important than just being accessible.

Things didn’t get much better very quickly, During the works on the top park I found the devastated sight that Watford Council had ripped out all the current inclusive play equipment including a Wheelchair roundabout  and replaced with nothing Inclusive at all.

Below is an extract from a previous blog detailing what I found.

As we reached the Cha Cha Cha Café, at first glance I didn’t see it.  Even though it is not finished, I thought How ‘beautiful’ the new Café garden looked. We continued to walk around the fenced off area and my heart sunk. Previously just behind the Café was a park. This park hadn’t really changed that much in years, but was a particular favourite among those with toddlers and younger children.

 *It had two great apparatus with slides, one in the shape of a fire engine which you could pretend to drive.*A little playhouse.
* Baby swings – With the aid of a special adapted seat from Firefly called the GoTo seat Owen was able to enjoy his first  swing. I remember it greatly, such a milestone. Such a special moment to see both the Twins swinging together.
Unfortunately Owen is too big to use the GoTo seat on baby swings. I had a trickly moment a while back when Owen went into full body extenstion and I nearly couldn’t get him out. This is so sad and he really did love the swing. Just look at that little face.Owen also loved the Wheelchair Roundabout,  The musical play panels and the Microphones where you could call down to the other person waiting at the second one at the opposite end of the park.
But all this was now GONE!!!
NOW Instead stood a little Wooden Obstacle course and Standard swings.  There was also a sandpit, Owen loves Sand Play but could not access this.

After an array of sent emails along with lots of research and information, I began to feel rather more positive when The Section Head / Parks, for Open Spaces and Projects at Watford Council got back in contact with me. I felt he really took on board what I had to say.  He really looked in detail to all the points I had made and read all the research and information I had sent. He then came up with a number of suggestions regarding Inclusive Play in Watford.20170601_155545.jpg

  • At my Local Park they agreed to install a more suitable Swing Seat in place of one of many standard seats. Which Owen now loves. Also they took a look at the Wheelchair Roundabout that I reported was a little slow and hard to push.
  • In the Cassiobury Cha Cha Cha café, they said they will make small scale improvements, such as Chimes and Sound Tubes. These small improvements will be all inclusive and can be shared also with a sibling.
  • Down at the Main Park by the pools is where the more dramatic changes took place. The Main Park is where the Pools are being refurbished and where the Changing Places toilet facilities will be built as part of the new Hub building.

I was told….

      “… There may be an opportunity to refresh the play area 
      here and seek funding to expand the offer here. This
      could include a wheelchair swing unit here…”

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Which has well a truly happened… all apart from the wheelchair swing due to the overwhelming price of such an item. They have agreed if money does become available or money can be raised they would be very keen to add the Wheelchair Swing at a later date.

Below is a link to their website all about Playgrounds.  It also gives you an email address for those locally who also want to see some changes or have some ideas.

https://www.watford.gov.uk/directory/11/parks_open_spaces_and_playgrounds/category/72/categoryInfo/3

Also with regard to the new splash pools.20170601_151938.png

As you can see we very much enjoyed these new facilities over the summer.

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I still haven’t worked out the best way to enjoy the splash park without his wheelchair seat getting soaked. So it was a back breaking day for me, but worth it to be able to see all four children having fun.

We also did use the new Changing Place, unfortunately there was trouble with lighting it only flashed on for a few seconds at a time. The pool attendant couldn’t be more helpful and apologetic and stood by the door to keep it open to give me some light and to give Owen some privacy from passers by.  I think we will put that experience down to pure bad luck. I have personally had so much great feedback from other users of the Changing Places Toilet there.

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Nice view behind a bin

Unfortunately not all Watford Council events were as successful. After a Consultant appointment I decided it would be fun to bring Owen and the girls to the temporary big screen on the urban beach at the top of town, it was only a few minutes away from where we had been. The unfortunate part this year, was access was to the beach in a wheelchair was not possible. I did try lift Owen out of his chair and sitting him with me, but then we got a bit stuck trying to get him and myself back out of the deckchair. Owen was then due his feed which he needs to sit in his wheelchair for. It was a shame as Cbeebies was on the big screen and I knew Owen would of quite happily sat there watching Teletubbies during his feed whilst Lilly and Florence continued to play happily in the sand. After a little while of bad views, Owen and myself got fed up and had to cut short the girls time on the beach.

A picture of the girls enjoying the beach and one of Owen in the dedicated Wheelchair Space too far back and off the beach.  I am now worried the ice skating event they hold in the same place annually will no longer be wheelchair accessible as it was last year, we will wait and see.

Previously in another blog I mentioned about Watford Councils controversial plans to knock down two adventure playgrounds and club houses to make way for new adventurous play parks. My local one was a big disappointment, All was built was large climbing frame and slide. My girls were far from impressed. They have had no real interest to go to that one despite being only 2 minutes from our house. The girls also mentioned as there is nothing there for Owen they would rather go to the other park a few more minutes way where there is stuff for Owen to play on.

wp-image-1103570449The other site where the second new Adventurous Play Park has been built is close to my Mothers house. After driving pass it a couple of times I had to admit it looked pretty impressive. I had also been told my the Council this new park had new Inclusive Play Equipment, so on my next visit to my Mothers we all decided to take a walk up there to check it out. It was a lovely warm day and the children hurried ahead in anticipation. As soon as we entered we were met by a little Inclusive Play area, which was great (Apart from a few flaws that i will come on to later)

wp-image-2122925183What I loved best was that the Inclusive Play equipment was also scattered about the various paths that we all enjoyed exploring. We even had an “I’m a Celebrity Get Me Out Of Here” moment as I dared to push Owen across the “Wibbly-Wobbly” bridge, Owen found the bumpy ride more than hilarious as we chased Florence across.

Now the flaw I mentioned earlier. There were  two pieces of equipment that were designed for children in wheelchairs but just did not work. Owen could just not reach the music beaters to play each of the music boxes. One reason being that the chain they were on was too short and the second was because they were hanging upside down, the angle you would need to position them so the beaters was impossible for Owen and his range of arm movement. This was very frustrating. We took photos in view to email both the council and play equipment provided later.

The equipment was installed by a fantastic company called Inclusive Play .http://www.inclusiveplay.com/ I posted the picture on there Facebook page and they very swift to reply apologising and asking for my email address and for more details. I sent all the details plus photos. Quite soon after I had a reply that that were going back to the designers and see if any thing could be done. A few weeks after that I received a really positive email to say they have come with an alternative design to fix the beaters in a more accessible position and from now on this is how they will be manufactured. Inclusive Play have also said they will retro fit the ones at the park i visited.

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Above is a picture of the new design.

All I want is places, companies and events to do is show that Owen is welcome. Owen deserves the same chances and opportunities as any other child.

All Owen wants to do is what other five year olds do… and that’s PLAY!!!

 

 

 

 

Bittersweet Memories

Today’s picture on Facebook’s timehop was the above one.

The first picture taken of my family as a family of six. Sweet you think. But each time I see the picture I think about different thing related to it.

Firstly it was the first picture of the Twins we put on Facebook… We waited a while after their premature birth at 28 weeks to even announce they were born. We were so caught up in our own little bubble that letting other people in, wasn’t even on our radar. I wasn’t really a big Facebook user then either. Obviously after they were born we let everyone close know, some were watching the London Olympic Opening Ceremony while waiting by there phones eager for news that the twins were safe, to others, also joining the rest of the country watched the ceremony were in ignorant bliss that dramatic events were unfolding woth us during that Friday night in 2012. It was a complete bombshell that they were going to be born soon, we didn’t know until a couple of hours before hand that they were going to make their unexpected early appearance. It was a complete medical emergency situation.

Like I said before after they were born not much else mattered to us, so we were in a complete bubble. To be fair us, As well as us unintentionally pushing people away, many people decided to run for the hills. So for us this picture was a big step in welcoming our babies to the world and welcoming babies back in.

Now taking the picture itself was no easy task. Both babies were relatively settled at this point Owen on CPAP and Florence was doing well on just nasal prongs. It was rumoured that our little time of Florence and Owen being in the same room was coming to an end. Owen stayed in the intensive care room longer than Florence so they had not been reunited in the same room in our nicked named ‘Skelton Corner’ together for long. But Florence was doing so well she would soon be moving from high dependency to the Nurseries. The Nurses had an idea that would be the first chance and maybe a last chance ‘in a while’ that this photo opportunity would and could happen.

Alot of careful planning from many, many Nurses was involved along with the careful moving of incubators, equipment wires and tubes, it took so long that the lunch break of some the Nurses involved were cut into, but they really didn’t seem to mine and were determined to get this photo.

It is a lovely photo, I especially love the pride in the big sisters, Bethany’s and Lilly’s faces. I, myself have a huge amount of pride for all my four children when I look at this picture.

I also can see the worry, sadness, exhaustion but happiness in mine and Alex’s eyes.

The weeks following this picture, were the toughest weeks we spent in SCBU. Florence continued to flourish in the Nurseries, But for Owen as always, more battles were there to fight. We ended up back in the intensive care room. These were the truly dark days. I often wondered during those days and there after whether when the Nurse said it was the ‘First Chance’ we would have to take the photo and maybe the ‘Last Chance in a while’ we would have to take it, whether the ‘in the while’ was just added for our comfort. Maybe the Nurse wanted to take it, just incase the worse happened and this would be are only family of us as a six?

Certain memories and thoughts always plague me, especially around this time of year when we live through the dates of these certain events that shaped how things became.

But sometimes the best medicine is to simply look back, appreciate and then remember how far things have come.

And of course treasure new memories.

We will be forever thankful to the Nurses for taking this picture. More importantly we are forever thankful for all they did for us to enable us to keep taking photos of our family, All six of us.

Much Love.

One Perfect Day

Yesterday we came back from our week away in Perranporth Cornwall. It was great. It was so lovely to get away and just what we needed.

I could blog forever about each and everyday of our holiday, But for now, I just wanted to share our favourite day. Our Perfect Day!!!!

This was a trip to the beach. It wasn’t our first trip to the beach, But our previous trip wasn’t as easy, as fun or relaxing as the one that happened on Thursday. Don’t get me wrong it was good, but not perfect.

Our girls like to explore as do we, but carrying Owen around the beach is back breaking. On the Sunday Alex and myself took turns to carry Owen. We tried to explore to caves and rock pools but Owen was just to heavy. As Owen can’t hold take any of his body weight it is not simply the case of him holding on to you, his legs were too tight to wrap around my hips. His head control is not great. Sometimes he goes so stiff it is like carrying an ironing board. When excited or upset Owen tends arch his back making him near impossible to hold, But we do. Owen is also a bit of a monkey and thinks it is hillarous to try to hang upside down. This is another way to hurt your shoulders and back. We often suffer from ‘Owey Shoulder’ as we call it.

So on our ‘Perfect Day’ we hired a Beach Wheelchair. We called up before we left our cottage to reserve one and picked it up from the car park on the beach. http://www.perranporthgardenscharities.org.uk/index.html

We used the firefly goto seat for postural support.

https://www.fireflyfriends.com/uk/goto-seat

With the help of the Beach Wheelchair which we nicknamed ‘Owen’s Monster Truck’ we had the most Perfect Day.

Owen enjoyed exploring the rocks.

Owen enjoyed going fast over the bumpy sand.

Owen explored the cliffs and went under arches.

Owen met the lifeguards.

But most of ALL Owen loved going into the sea. Owen loved the sound of the sound of the waves crashing. He giggled so much.Owen loved watching his Big Sister’s bodyboard, finding their screams of delight hilarious. I loved how I could watch all my children have fun at the same time without worry or without pain.

Most of all I loved this moment… Florence holding on to the chair whilst jumping over the waves. Both laughing and screeching together. This too me was truly perfect = One Perfect Day!

#SEND30DayChallenge Day 8 – What’s in your ‘Go Bag’ ?

Day 8 of the #SEND30DayChallenge is “What is in your ‘Go Bag’ ?

A ‘Go Bag’ is like a grown up version of a Baby Changing Bag, filled with the essentials for any trip or errand outside of your house.

This is a list of the contents of Owens ‘Go Bag’

  1. Nappies/Pads
  2. Wipes
  3. Spare clothes
  4. Spare bandana bibs
  5. Spare/Emergency Mic-key button
  6. Extra extension set, syringes
  7. Ear defenders
  8. Paperwork including proof of disability and campaigning leaflets
  9. Iron man or Spider man action figure – this is his ‘comfort toy’ which he loves to hold, press the button and hear the noises ****
  10. ‘Emergency’ Maraca – Second comfort toy (When the action figure fails) Owen loves to hold something in his hand and sometimes chew. This is perfect as he loves the sound also.

We also have to take other bags and for a day out lots of other bags and equipment.

Mainly alongside Owen’s Go Bag we take his abbotts rucksack with his feeding pump in. Plus all the items needed to go with this including; Owens feeding pump, milk, water for flushes and incase of needing an emergency button change, extra milk syringes, medicines, spare extenstions and giving sets and the pump charger.

****We have been questioned by a professional whether the spider man (this case iron man) is a suitable toy for Owen. Shouldn’t we just stick to something special needs and not force a mainstream toy on him. Owen has lots of toys both mainstream and special needs and for whatever reason Owen has chose this toy as his comfort. He also loves to watch the spider man and avengers cartoons on a Saturday morning… so there 😛 Sorry for going off topic.

It would be interested to see what is in everybody else’s ‘Go Bag’

Saving Nascot Lawn Children’s Respite Service Is Our Only Choice

So Monday was the night, The night we have been working towards for the best part of a year – Owen’s 1st Overnight stay at Nascot Lawn Children’s Respite Service.

At times we was not sure this day would come; Firstly because our request had to go to a two panel meetings but after the second Owen was allocated 1 night per month. Owen then had to undertake ‘alot’ of tea visits to get Owen used to going back to Nascot Lawn after his beloved Day Care Sessions came to an end over a year ago when Owen started FB_IMG_1500569164784school. I was worried Owen would not remember Nascot Lawn he was unsure and a little confused as it felt familiar but all so different. I was also worried Nascot Lawn would not remember Owen, in hindsight this is ridiculous, As when we went back for our first visit the staff told me they were delighted Owen was coming back and had missed him immensely, they joked (I think) that all the staff were fighting over what ‘team’ Owen would be in, as they all were so keen to look after him. When we left that first meeting, we couldn’t get out the door for all the staff wanting to say hello and give Owen a lot of fuss. Next time I had a long meeting without Owen to get his care plan just right. The staff member knew Owen so well it was not a one-sided conversation, and her discussing Owen in a familiar way really helped out me at ease that he would be of course fine. Next came the many Tea Visits which they patiently allowed Owen to go at his own speed until we all felt ready for a full overnight stay.

After hearing the news that Nascot Lawns was said to close Nascot called asking if I still wanted to go ahead with the 3 planned Overnight stays? I said yes immediately, We all had put in so much work at this point, Owen was ready!! I also was worried that if I refused we would just be struck off some list and we would get no further support. Another part of be did it out of defiance, The powers that be have not won yet, we are still fighting to keep it open and saying no would be like admitting defeat. Later I did question my choice though, am I putting Owen through all this for nothing? But I think that’s more of my own guilt rising than truth.

So Monday was here, His school transport bus came to pick him and his rather large bag as they would be dropping him off to Nascot after school, they would also pick him up from Nascot in the morning to take to School. I would not be seeing Owen from Monday morning to Tuesday after school. My emotions were all over the place, but I managed to hold it together.

After picking up the girls from school, instead of rushing home to meet Owen’s school bus we went to the park, the girls were thrilled to join their friends something we never do. Not only because we have to meet the bus, Owen tends to feel overwhelmed. I then feel overwhelmed trying to calm and look after him, while also trying to look out for the girls, help Florence on the climbing frame or Push her on the swing. Sometimes I wish I just had another pair of hands, someone to help me. Owen does accessible play equipment, but he hasn’t quite got to grips with that he can not go on this forever, if we stop spinning him on the roundabout, pushing him on the swing he goes into full melt down then we have to leave. But on this hot Sunny Monday afternoon the girls played as long as they wanted, even Beth came to join us. We ended up staying at the park till just before dinner time. It was great and something many people, and I used to take for granted.20170717_162158

Another unusual thing happened, I fed the girls and then managed to make dinner for Alex and Myself to eat at 7pm not the usual 9pm or after, when we have tended to all of Owens needs, still awake but calm. At 8pm my mum came over to watch the kids, so get this? Me and Alex went out for a couple of hours on our own!!!!

Don’t get me wrong, I am not blaming Owen for all the things we can not do, we have truly accepted this is just how it is, but it was nice, just for a little while to enter the other World the one where people typically live. It was so easy and I had so much time. Probably too much time to think.

I missed Owen deeply, I worried that he wasn’t with me, did he miss me too? No one knows him I do! The guilt got to me. It was not easy and I felt sorry for Alex that night, this was our time, But i wasn’t much company, my head was elsewhere. Maybe it was me that needed more tea visits.

The next day I stared out the window awaiting the school bus that would bring Owen home.  He arrived full of smiles and giggling frantically, I knew he was happy to be back. I read his note-book from Nascot, he was fine – obviously he would be. He needed one to one care to enable him to have lots of reassurance and cuddles. He watched Mr Tumble and spent time in his favourite the sensory room. He had a fantastic time. Owen was a little sick after a feed ( ongoing reflux problems) and didn’t go to sleep till 10.30pm, waking up gain at 2.30pm for cuddles and reassurance then up for the day at 5.30pm. At first I thought oh no, then I snapped at myself this is just Owen, this is his normal. (Hence why I look so tired all the time) so this was nothing to worry about at all. Owen really enjoyed his time and I was glad.

I feel silly feeling so guilty and anxious about Owen going to Nascot. I know I would not let him go if I wasn’t 100% sure that he would be safe,  looked after in a way I expect and cared for. The fact that it was such a success fills me with sadness, Nascot Lawn really can not close. We got a glimmer of hope, on how our family life can improve, how our marriage will survive, how we all will cope, recharge and rest and in return Owen had a truly fantastic fun sleepover with his friends.

I’m not sure what will happen if Nascot Lawn does close. We are uncertain if we will be offered anything else. At the moment due to Owens age and medical needs there is no alternative. Even if there was, I very much doubt it would be a match for the truly amazing Nascot Lawn with all their kind and caring staff. Before this we have to undergo an assessment to see what they say are our needs are? This frightens me, every aspect of our life with Owen will be closely scrutinised, I know I can not hide behind my normal mask of ‘I am ok’ .. ‘I do not need help’ Sometimes I wrongly believe asking for help is a sign of weakness. The whole idea of being assessed by strangers who we have never met before makes me feel so stressed. I wish mine and other families didn’t have to go through this added stress and the uncertainty that it brings. Most of all I wish HVCCG would see sense and work out a way to keep Nascot Lawn Childrens Respite service Open.

This is why we need to #SaveNascot

Please help us by signing and sharing the petition below.

https://www.change.org/p/save-nhs-nascot-lawn-children-s-respite-services?recruiter=224336991&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=share_petitionFB_IMG_1500569152216

Save Nascot Lawn Children’s Respite Services

Above is a previuos post about Nascot Lawn which explains exactly why Nascot Lawn is so important.

Thank you for reading.

 

 

 

#SEND30DayChallenge – Day 7 – 5 things I’d change about the way you see my son

20170621_1704441. The first one is easy – PITY!!! My son does not want your pity. He does not feel he is less than any of us, so pitying him is far from helpful, in fact it is damn right insulting. the awkward exchange when someone sees your sons disabilities and stops there, not looking beyond, not looking to see your boy. This is mainly followed by the participate cocking their head to the side and muttering “Oh bless” at times this is followed by “At least he is happy” which they say pretending this is to bring comfort to myself, But you know well and good this is more a mask for their own confused feelings to cover their own awkwardness and feelings of pure pity.

20170630_1435462. You just don’t see him. At times I wonder if my son has borrowed Harry Potters invisibility cloak. Many people talk over him to me, Talk to his sisters but ignore him completely, Basically talk to everyone but him. This is just as bad even when you are talking about him, or saying complementary things about him. Guess what he likes to hear them himself. He is just such a sociable boy and just loves attention. It is ironic that many people ignore him and talk to his sometimes painfully shy twin sister, who also would rather you talk to her brother. He calls out for attention, Nothing is more hurtful than watching him get frustrated when he realises he is being ignored.

20170521_1625363. He doesn’t want to be treated like a baby! He may be developmentally wise younger than his years and his disabilities restrict him in ways that obviously frustrate him. But he is in no way a baby. He can’t walk, talk, move or express him self like his peers, but he tries. We and all his ‘team’ truly believe his understanding is much greater than he can show us. How frustrating must that be for him, How frustrating must it be people him just do not realised he is willing and able to understand and end up treating you like baby? It may take a little more work to understand him, and come into his way of thinking, but I promise you once you enter his world it is magical, you will not want to leave. On a similar note he doesn’t want to cradled or held like a baby either, being cradled is very frustrating for him. Owen likes to be, as much a physically possible, in the middle of the action. This is where you can hugely help to support him. Any way cradling him at this size, with his tendencies to go into extension and throw his body back in frustration, is pure painful for the holder.

20170707_1106514. Quite similar to the above point – Just because he is non verbal does not mean he has not got a lot to say. He in fact has more than a lot to say. He may not have the words but he has facial expressions, body language and some sounds to get his point across. If you take the time to learn these you will be rewarded tenfold. Also he is trying all different sorts of communication using all sorts of technology. At the moment he is working on communication switches.

5. Lastly I do not have to justify my son’s existence. We didn’t choose for him to be born so early, to be so sick to result in him having damage to the brian. I have been trolled about this very subject. I have been told my son is a drain on society, and has no quality of life and much, much worse. I have often been in tears when hearing the baby Charlie fight for life, obviously mainly because i feel for Baby Charlie and his family, but silently because I heard many people discussing the case describing someone who can not talk or walk are just existing am not living. This is beyond hurtful. I can promise you now, My son lives life to his fullest, he exceeds all that is expected of him, He gives 100% each day. He is the happiest child i know ( though like us all has his moments) You can not say that about many people.1478949460774

#SEND30DayChallenge – Day 6 – A Letter to the PM

 

Dear Prime Minister,

I am writing to you regarding my complete despair from the frontline of the cruel continued cuts you keep enforcing. I fully appreciate you will tell me all  “Cuts do need to be made” and “Cuts are happening across the board”  But these endless cuts seem to viciously attacking the most vulnerable in society and their families.

I am a mother of four and also an Unpaid Carer to my beautiful four-year old son who has a severe disability and complex medical needs. I am an unpaid and under valued member of society. Your persistent execution of cuts to the many services we need reflects this. Myself, My family and many other families in similar circumstances are being forced towards crisis point.

73% of Carers said they feel that their contribution is not understood or valued by the Government

Unpaid Carers save our “Government” over £56 billion a year, we earn way less than the minimum wage, being only entitled to just £62.70 per week Carer’s Allowance for a minimum of 35 hours work – the equivalent of £1.79 per hour.  If us Carers only had to ‘work’ 35 hours a week?

A spokesman for the Department of Health said: “We are committed to improving social care, which is why we will consult later this year and put it on a stable footing for the future.”

But the above can not be further from the truth. Consultation later in the year will be too late….

On Friday 16th June, Myself and many other families across Hertfordshire received the devastating news that the Herts Valleys Clinical Commissioning Group would be stopping their £600,000 a year payment to support Nascot Lawn Children’s Respite Service. This is because YOU and Your Government are forcing them to make funding cuts. Nascot Lawn will therefore close on 31st October 2017. Herts Valley CCG did not consult with parents, staff, children, the children’s medical team, or anyone involved in the care of these complex children. They have said it is the responsibility of Hertfordshire County Council to fund Nascot Lawn. Hertfordshire County Council are refusing to fund Nascot Lawn (even though the have millions of pounds in the bank for ‘unforeseen circumstances’)

So what is Nascot Lawn and why is it so important to save?                                             Nascot Lawn Childrens Respite Services provide regular overnight respite and care for children and young adults with severe learning and physical disabilities with additional complex medical needs. A day care service for children under 5 is also provided.

Nascot Lawn allows Parents and Carers to take a much-needed break, Confident in the knowledge that their child is receiving the highest standard of care by familiar staff. The staff are made up of an experienced team of qualified Learning Disability and Sick Children Nurses and trained Health Care Support Workers. The staff strive to meet all children’s and young adults emotional and physical care needs along provided them with activities that they enjoy.  Many of the Parents and Carers see the staff as an extension of their families. Nascot Lawn is described as ‘Home from Home’. It deeply saddens us that the well-loved Staff face losing their jobs also.

Hertfordshire County Council want to re assess the needs of the 77 children that currently have Nascot Lawn named in their care packages, before the end of July.
Even though they have all already been assessed in order to receive their allocated days/nights at Nascot Lawn. Hertfordshire County Council will send members of their 0-25 SEND team to assess us – people who have no medical training, and probably very little medical knowledge. Hertfordshire County Council will not be able to offer us overnight/weekend/holiday respite as the 3 other children’s respite centres in Hertfordshire are NOT equipped to take children with a medical need. Therefore the most needy, vulnerable, medically complex children will go without. Our families – who are already struggling and teetering on the edge of not being able to cope will not be receiving the vital help the need in order to carry on. Herts Valley CCG and Hertfordshire County Council are having a bitter dispute. And our children – the most vulnerable and needy in our community are caught in the middle.

Looking after a loved one can be enormously rewarding, But it can also be both utterly physically and mentally exhausting.  Without vital breaks provided by Nascot Lawn Respite Services, Carers can often reach breaking point where they can no longer continue and their own physical and mental health deteriorates as a result.

On the NHS Nascot Lawn website itself they quote

“ This care enables families to continue to look after children with very complex needs in their own home”Research by Carers UK which surveyed seven thousand Carers nationwide found

What is more vital than that?

Research by Carers UK which surveyed seven thousand Carers nationwide found the following

  • One in four unpaid Carers has not had a day off in five years.

  • 40 per cent of unpaid Carers have not had a break in over a year.

  • 69% of Carers said they find it difficult to get a good night’s sleep.

  • Many Carers are being pushed into mental and physical ill-health themselves as a result.

  • 46% of carers reported suffering from depression because of their caring role.

  •  1.4 million people provide over 50 hours of unpaid care per week.

  • Some 6.5 million people in the UK provide unpaid care by looking after an ill, older or disabled family member, friend or partner

Heléna Herklots, chief executive of Carers UK, urged the Government to improve support for carers, warning:

“Without access to breaks, carers can quickly reach breaking point….. Carers are struggling to get a break because appropriate support for their loved ones isn’t available or services they rely on are being cut or charged for.”

So us devastated Parents and Carers are fighting to save Nascot Lawn. We are all well aware there is no other facility else like it in Hertfordshire so this is our only choice.  We amongst many other plans of action have launched a petition to save the centre. This has been widely supported and has been signed by over nearly 14,000 people – This will be presented at a Hertfordshire County Council meeting on July 18th.

Find our petition below

https://www.change.org/p/kathryn-mason-chief-executive-officer-nhs-herts-valleys-ccg-chair-nicolas-small-save-nhs-nascot-lawn-children-s-respite-services?recruiter=224336991&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

Watford Borough Council is now officially opposed to the controversial closure of NHS Nascot Lawn following a Council meeting on the 11th July 2017 and was pleased that the motion was supported unanimously

Watford Constituency Liberal Democrats Website says

Our local CCG is facing up to £45 million worth of budget cuts, however, before the election the Conservatives pledged an additional £8 billion in real terms over the course of the next parliament for the NHS.

Yet just a week after the election result was confirmed, over 60 families received letters telling them that a health care service that they truly depend on, delivered by the NHS in Hertfordshire, would close on the 31st October, leaving them with little or no alternative provision.

http://www.watfordlibdems.org/support_savenascotlawn

At the same meeting Labour Councillor Asif Khan called upon the MP for Watford and fellow 11 Hertfordshire MPs to ask the Department of Health, The Chancellor and you yourself to find the money to save Nascot.

http://www.watfordlabour.org.uk/save-nascot-lawn.html

We are hoping the MPs step up and make you see these cruel cuts need to stop. If not then maybe I may make you see how deeply these cuts are hurting families like mine.

Our children need Nascot Lawn to stay open. Despite what Hertfordshire County Council are saying, they have not been in touch to reassure If they listened to us parents they would understand why. Please try putting yourself in our shoes, providing specialist medical care around the clock with no break – you wouldn’t expect your nurses to do this so how can you expect us to.

It is time these cruel cuts came to an end and you supported the vulnerable and those who give everything to support those they love and care for in an increasingly difficult climate. Carers matter. But more importantly our children matter.

Below is a link to our Facebook page where it is plan to see the volume and devastating outcome of many families who need this service. Underneath that I have added my favourite quotes from the page

https://www.facebook.com/savenhsnascotlawnchildrensrespiteservices/#

Our Children cannot communicate or express how they feel,  Our Children who have no understanding of this awful situation. Us Parents who are already tired and on their knees because they care for their children 24 hours a day 7 days a week. Parents who battle daily for the children’s needs. Parents who don’t even have time for their other children and partners.

We are an army and we have been underestimated.

Special needs parents know how to fight! And they fight until the bitter end for their children. This isn’t just a job for us, this is our lives and our children’s lives we are fighting for. We can’t go home and forget, it’s not an option.

Shame on you Herts CCG, Shame ON you Herts County Council

 

And Shame on you and your Government.

 

Yours Respectfully

Sheri

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