Inclusive Playgrounds Let Owen Play!!!

What happens if you leave your straps at home... just use your Twin sister as a wedge

Inclusive Playgrounds Let Owen Play

Last Sunday all six of us (oh and the dog) decided to go to Cassiobury Park to have a look at the Grand Opening of the newly restored Bandstand.


During our time there my Husband took to Facebook to share his disgust and upset of seeing first hand how the newly built playground was totally inaccessible for Owen. This post got a bit of attention and support, so I thought it would be a good idea to expand on this.

My Husband's Face book post

Just in case you didn't see my Husbands post or you were unaware this in a nutshell is what this is all about.
 Cassiobury Park is currently undergoing a £6.5 million restoration. 
In a previous blog post I detailed how as part of it an old but accessible park which included a Wheelchair Roundabout and other sensory play equipment was demolished and a small inaccessible park was currently being built in its place.

I have previously been in contact with the council, who may improve the other playground in the park to be more inclusive. After the weekend I felt another email was in order to gain an update on any progress and developments which have taken place regarding this.

Here is a extract of that email. 

I just want to start by thanking you for installing the bucket swing at Callowland. We made lots of use of it during the summer holidays. Owen loves it.  It has been very popular and we often had to wait our turn.  I have to say I do feel lucky living so close to Callowland as it is by far one of the few truly accessible parks around.

I would also like to congratulate you on the wonderful achievement of restoring the Bandstand at Cassiobury.  We were there for the Grand Opening last Sunday and have to say it looked perfect and was lovely to see it being used.  Owen enjoyed listening to the brass band very much.

Unfortunately our day was spoilt as we walked over to the Cha Café and new playground. Owen has three sisters who were keen to take a look at the new park.

Now totally finished I was made even more aware of how inaccessible it was.

It still deeply upsets me that you have got rid of the Wheelchair accessible roundabout as well as the other sensory equipment and replaced it with totally inaccessible play equipment.

Now it has been fenced off the area seemed incredibly tight and a small path that didn't really lead to anywhere was really hard to push Owen on. Taking Owen in his wheelchair to watch his sisters play we felt incredibly in the way. The hardest point was when Owen got upset just watching. His understanding is not great. I am not really sure how I would explain why he was left out anyway.

Luckily his sisters sensing Owens upset decided we would leave.

We walked down to the main playground just so Owen could go on the only piece of accessible play equipment in the park.

I know in your previous email you said as work begun by the pool area there may be an opportunity to expand the play equipment.  I was wondering if there was any further update on this?

I hope Cassiobury will eventually be a park for everyone to enjoy.

I will let you know what response I get from this.
Thank you for all your support regarding fully inclusive playgrounds.
Please get in touch if this effects you also.

Love this picture of just a pair of Cheeky 4 year old Twins doing what 4 years old do best.. Having Fun Together.

First Day of School!!!

After 6 long weeks of fun September seems to have come around very quickly yet again .

Today was all of my squads first day back at school. As the four of them go to three different School's it is unusual for them to all go back on the same day. 

Last night I was feeling the stress of having four lots of uniform and school bags to sort. I had a niggling feeling that I had forgotten something important mixed with a whole load of other emotions.

I hope you like our 'Back to School' photos from this morning. Social media is full of them. I love seeing everyone all looking smart in their uniform.
I know others will be sick of them and probably find some memes to illustrate that view.

Last September I didn't get to take 'Back to School' photos.
Florence started Nursery a couple of weeks into the term. Due to Owen being in Great Ormond Street after his Ladds Procedure Operation to correct his Malrotation of the Bowel and complications from his newly fitted Gastrostomony tube I ended up sadly missing Florence's first day at Nursery. My sense of sadness and guilt weren't help as she was very anxious going to school, even when I was back there were often tears in the morning. Pre-School was a disaster.
But over Florence's time at Nursery her confidence began to grow and by the end of the school year she skipped happily into class.

Last September, Owen still hadn't secured a Nursery/School place at a Special Needs school. He eventually started his fab school the following January.

Deep down I am always going to be a little sad about the fact they have to go to different Schools.

This morning though was eventful. Florence was over tired from her night time antics. But we made it in time to take the obilgatory Back to School photos before Owens School bus came and picked him up.
He was particularly smiley as he got on the bus and off he went.

After Owen had left for school that's when Florence's nerves kicked in. She kept asking me over and over if I was going in with her. We watched a little of cbeebies then had to go.

Florence held my hand tighter and tighter the nearer we got to school. Typically it was raining for the first day back of term so we were also struggling with umbrellas and I was trying to calm and reassure Florence.

I went in with her and helped her find her peg, led to her classroom and told her it was time for me to go. She seemed ok so I just turned around and walked out.

On my way back from taking Lilly to her class I peeped inside  Florence's classroom to see her settled at a table doing some sticking. What a relief.

Owen came home on the bus at midday. He was laughing his head of at the bus assistant Mary and was further excited as he got inside. In his book his teacher wrote. ' Owen was on top form today.... we can't believe how much he has grown..'

A little while after I got a call on my mobile. My heart skipped a beat as the girls school flashed up. It was the school office telling me Florence had bumped her head in the school playground and was in first aid with an ice pack. They reassured me she was ok and it was just a courtesy call.

Soon it was home time. Owen was very excited to go and pick up the girls.
Florence came out looking a little dishevelled, one of her plaits was undone and she had a hole in brand new tights and red sauce down her top. Lilly later told me she must of had the pasta for dinner. Which I guess is one way in which I will find out what she has eaten. She was a little teary, obviously very tired and wasn't really in the mood to talk.
When home she was slightly happier and told me she enjoyed her day at school, she played with her friends and ate all her dinner up.

Lilly also said she had a fantastic first day back at school. But is tired as her classroom is now upstairs.
Bethany came home and said her first day was okay, which for a 13 year old is good.

All in all I think it was a successful first day at school for all.
Now for the rest of the year.

Our Trip To The Eden Project

I just want to share our experiences of our fantastic day out at the Eden Project  during our Family Holiday to Cornwall last week.

It was a very wet Tuesday morning and the radio presenter on the local radio station confirmed what we saw out the window. When Cornwall says it's raining it means it is really raining.

The first thing we did was drive over to the nearest town centre St Austell to pick up some extra waterproof rain jackets and extra umbrellas.

Then we travelled to the Eden Project.
We had pre booked the tickets so was all ready the roll.
It was just after lunchtime so all the disabled parking was full up. That wasn't such a problem as there is a fully accessible shuttle bus service that shuttles everyone from various car parking stops to the main attraction.

As soon as we were at the main entrance we were pretty much greeted with the visitor toilets including a great #ChangingPlaces facilities. Which we were happy to use through out our trip.

We sat and had Cornish Cream Teas then went off exploring.

The whole place seems to be completely disabled friendly. All the easy access routes clearly sign posted. In the Biomes we found signs to easiet, quicker routes which were great, esoecially when we all got a little too hot.
Outside there were lifts to save you going down the steepest on routes also. Everything was great.

We all particularly loved the summer exhibition 'Dinosaur Uprising'.
We watched and petted a 'real dinosaur' Owen loved this and chuckled and giggled away. Owen loved getting a turn to pet the dinosaur.
Florence who was a little scared of the dinosaurs watched from a far.. till she gained courage to stand next to Lilly and wait for her turn to stroke the dinosaurs.  Unfortunately as the dinosaurs turned it's large tail hit her across the face causing her to run off and lose her place'
(She wasn't hurt btw just shocked that a dinosaur got her)

Inside the Dinosaurs Uprising exhibition was brilliant. There were prehistoric scenes with moving and roaring dinosaurs. Owen eyes couldn't open any wider, he let out squeals of delight and the loud Roars.  Owen just simply loved them.

Having a big diverse family made up of a teenager, a soon to be tweenager and 4 year old Twins one with sensory needs and the other with profound physical and sensory needs, it is hard to find a day out that can suit us all.
But we definitely found this at the Eden Project.

Highly recommended for all.

"Let Owen Play" Part 2 - The Response

Just a quick post to give you all an update with regards to my last post "Let Owen Play"

After writing my last post "Let Owen Play"  I decided it would be good to share, tweet and email to anybody and everybody I deemed influential, helpful or interested.  I am very happy to report it had a big response from fellow campaigners, local people and organisations. Feedback given was, they all supported the need all for a more Inclusive play park.

The big news is I am feeling rather more positive after being in touch with The Section Head / Parks, Open Spaces and Projects at Watford Council.

I felt he has really took on board what I had to say.  He really looked in detail to all the points I had made. He then came up with a number of suggestions regarding Inclusive Play in Watford.

• It has been agreed to look at my Local Park and to install a more suitable Swing Seat in place of one of many standard seats. Also to take 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 will now 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.

      These small changes would lend themselves to make this
      Garden/Park more of a great little Sensory type Garden.

• Down at the Main Park by the pools hopefully more dramatic changes will take 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..."

So all in all I think that was a good first response. I will obviously be keeping a close eye on things to make sure these things happen. I will continue to blog the progress of this and I am ready to fight if things do not happen, but for now I just have to wait and see.

I just want to end by thanking everyone for all their support .

Thank You

Let Owen Play

 

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 Watford. Our parks were always of such a high standard. My children have had so much fun in many of them. As a Mother of four I have spent more hours than I would like to think about in Parks. 

Owen is a massive Thrill seeker, his favourite piece of equipment (Out of two which he can go on) at our local park is the Nest Swing. You should hear his squeals of delight mixed with his proper belly laugh. He loves to go very High and very fast.
 The unfortunate thing is, that this is very popular piece of equipment, especially with the older children, that once he has had his 'go' There is not much else for Owen to do.


Cassiobury Park in the heart of Watford played a big part of my childhood. I am so glad that it has become a big part of all of my children's childhoods too.As you may or may not be aware, Cassiobury park is currently undergoing a big £6.5million restoration project. 

The project includes;
*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 town 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. (This itself was in the balance at one point due to costs, but now after a lot of forwards and backwards tweets and emails and phone calls I have been assured this will definitely be going ahead.)


I have been asking Watford Borough Council for many months now if they have any plans to make Watford Parks Fully Inclusive? They responded by saying that ALL Watford Parks are already Fully Accessible.

Let me just mention that Fully Accessible and Fully Inclusive are two totally different things.

Fully Accessible playground means that 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.
Wow 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.


I just wish Watford Borough Council were on board with this idea.

This week there has been,  

The Green They are planning to build a builders yard on.

*Protests over the Council closing two supervised Adventure Playgrounds (which act like a youth club for many older children and young teens.)
* Planning permission has been agreed to put a builders yard on the Green by my house.
*Farm Terrance Allotment holders whose fight went all the way to the High Court to save their beloved Allotments got served their eviction notices after losing their last battle with the council.
 

Things personally for us took a turn for the worse this week when we all decided to take a walk down to Cassiobury Park, while Beth was at her dance Class. We was keen to see the progress and to mainly enjoy a lovely walk during a very rare, warm, dry day.

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. 

Owen's 1st time on a Swing

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!!!

Instead stood a little Wooden Obstacle Course and Standard swings.  There was also a sandpit, Owen loves Sand Play but could not access this.

I was so upset,  I couldn't see anything Owen could play with or on. 
 As the girls ate their snacks (also something else Owen can not join in with) I sent an array of tweets and emails.
 I still haven't had any replies regarding this. My Tweets and Emails continue to go on ignored just like my Sons needs to play do.

At the moment I have no idea if whether or not this is it? Will more equipment that my Son and others like come?

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

All Owen want is to do what other four year olds do... and that's PLAY!!!

My Guest Blog for My Changing Place

Guest Blog

Let It Go!

Written by mychangingplace on June 21st, 2016June 21st, 2016. 0 Comments
                    

https://www.facebook.com/mychangingplace/photos/a.1032479136806304.1073741827.1032477613473123/1060623327325218/?type=3     

As part of Learning Disability Week one of our fellow campaigners Sheri Skelton gives an insight into just how inclusive a Changing Place facility can be.  Many people understand the need for Changing Places facilities for people with severe disabilities.  But what of the other groups who may benefit from the use of these facilities.   


As many of you are already aware, my main drive behind my persistence for change regarding toilet facilities is my nearly 4 year old son Owen.


Owen’s Cerebral Palsy means he is unable to potty train like his twin sister Florence. He is currently getting on the big side for using Baby Changing facilities and the future we face, without such facilities as Changing Places is to change him on the toilet Floor.

Florence has no medical diagnosis, but has some Developmental Delays, Learning Delays and Sensory difficulties. She is under a Paediatrician for these, but at the moment it is a case of wait and see. Florence also sees a Speech and Language Therapist and is supported at Nursery.

Florence is ‘almost’ fully toilet train during the day. It wasn’t plain sailing and is all very new.
One of the major hurdles was she had a major fear of ‘letting go’.
We tried everything.. bribes, sticker charts even changing some of the words to the Frozen song “Let it Go”. Despite pressure from Nursery I just knew Florence wasn’t the sort of girl that can be pushed. Eventually we had the break through. One time she was so bursting as I suggested sitting on the potty she forgot herself and ‘Let Go’.
Thanks to her YouTube obsession with ‘Surprise Egg Opening’ Videos we managed to encourage her to keep going with the promise of Kinder Eggs. Gradually we replaced eggs with stickers.

For my Husbands recent Birthday we took a family day out to Brighton. We decided to keep her nappy on to save accidents while travelling. (although on this trip we discovered Florence gets travel sick)

We arrived and started walking towards the beach past the Pier. Florence announced she needed the toilet. I knew there was a toilet on the Pier (admittedly I had forgotten how far down it was) so I dumped the picnic basket and other bags by my husbands feet grabbing Florence in one hand, My eight year old Lilly in the other (as she decided she needed to go too) and hurried through the crowds towards the toilets.

Lilly was now bursting, so went into a cubicle. I told her not to lock it as I would be outside. It was then obvious, most likely due to her earlier upset tummy, a toilet cubicle wasn’t an option for Florence.
We were then met with her first Nemesis The fold down Baby Changing Table. “Its wobbling…. I falling” she screamed. Florence has a masters degree in tantrums and decided to show her skills while 3ft in the air.
I simultaneously tried to calm her, clean up the ‘poo explosion’ which meant a full changed of outfit and keep an eye on Lilly’s toilet door.
Florence calmed down just enough to hear the flush of someone else’s toilet. “its loud it loud”. I managed to calm her once again.

Lilly had finished and I was just about to put Florence shoes back on, Then it happened… The arch enemy of the public toilet, The ‘Automatic Hand Dryer’. (I generally plea with people not to use it while we are in public toilets till we leave, but with all the drama I hadn’t a chance). I scooped up a petrified screaming Florence and her shoes, then found a bench outside.

It was then sitting on the bench, holding Florence tightly as she muttered incoherent words between sobs. I had a thought, “What if we had used a Changing Places Toilet?”
That whole meltdown could have been avoided.
A Changing Places Toilet would have had a big adult sized bench, No risk of her falling off. There would of been no unexpected flushing of toilets. No ridiculously loud automatic hand dryers. Lilly could have been doing her business without me worrying if she was going to be locked in or walked in on by a stranger.

I can not be the only family who would benefit from a toilet facility like this. What about others whose families members with such sensory issues or have a learning disability?

Mencap – The Voice of Learning Disability say;

“There are around 250,000 people in the country whose basic needs are not being met by standard accessible toilets”

“Standard toilets do not meet the need of the thousands of people including 40,000 people with profound and multiple learning disabilities (PMLD)”


I thought of a friend of mine whose boy has Autism. Before he was toilet trained at aged 7 she had change him on toilet floors. Now he is toilet trained she still has trouble when out and about as he hates public toilets. She describes public toilets as “Sensory Overdrive Hell”. Others can find the openness and overcrowding of public toilets distressing. The noises and smells can also be overwhelming. My friend often uses disabled toilets with her son. But feels that because his disability isn’t of the physical type many people pass judgements. She feels like a cheat. She also has had negative comments from strangers regarding this.

But what if…

The only option wasn’t either Standard Disabled Toilets (to suit some disabilities) or Baby Changing Facilities? (for well just Babies)
What if their was toilet facilities that could suit every bodies toileting needs?
What if toilets such as Changing Places and Spaces to Change were not only seen as an expensive, excessive, elective addition, But as the standard.

A Fully Inclusive Toilet could be used by those with Physical Disabilities, Learning Disabilities, Parents with toddlers, Elderly people the list is endless.
In addition if places wanted to add further toileting facilities as a plus i.e. Baby changing rooms, Baby feeding rooms, Basic Disabled toilet they could do.
Fully Accessible toilets should be the new standard.

Shouldn’t this be what  everyone is aiming for?

Happy Fathers Day 2014

Note;
JUNE 2016: Just re read this draft... It didn't make the light of day 2 years ago.  Maybe it was all too raw still.
Today I am able to share this. 

                                   
Note;
JUNE 2014
Not sure if this blog entry will make the actual blog, but as it is Fathers Day today it got me thinking and that led to writing. The problem is this post is more about my husband Alex, when he found out I was writing about him he wasn't keen on me posting it. I told him I would finish writing it, then I would read it to him and he could decide whether I should post or not. So if you are reading this the answer was YES I could.



                           Father's Day 2014



I always knew Alex would be a Great Dad, But we both underestimated the lengths a great dad would have to go to become an Amazing Dad.

Looking back at when we first became parents its like looking back at two very different people.
Obviously we were younger. We were first time parents. We made some mistakes and worried too much over things that didn't need worrying over.
 But we always did and continue to have the same views on parenting. We are nearly always on the same page and always deal with things together.

We recently both spoke about how we have changed or 
evolved and both agree we can pin point a particular time when that change took place.
 Finding out we were having Twins was the start of it. The memory of that day still makes me laugh.
 Alex was wearing a Superman top,  Alex went so pale and quiet with just plain panic in his eyes. Despite the massive shock we were happy.
 A week later at second scan that feeling changed, we had some news that made us look at things a different way and we had to make some really most serious decisions.


 After the shock of delivering the twins at 28 weeks, as well as dealing with fears for the twins life, Alex then had to deal with his fears about myself as I became poorly. He must of felt so split and so alone.

When I was finally able to see our babies, I was surprised  how well Alex was coping. How he had made such a personal link with the Doctors and Nurses. This was immensely important and it set the tone for the rest of our stay. Alex tried to understand every bit of medical jargon they threw at him. If he didn't understand something he would question it until it was made clear.

During this same time I have to admit I felt a mess. I felt poorly, weak and in pain. I felt useless.
When we was able to do the babies cares Alex stepped up first. I was so frighten of hurting the babies.  The alarms put me of even undoing a nappy change, as even a small movement could set them off. 

 Alex was confident. Alex supported me so much on my first visits, With Alex's gentle guidance we both soon became pros. With his help I found my way back to some sort of myself. I finally felt I had regained my role as a Mother.

We then worked together as a team.
We knew when each other had a moment when words were too hard too find and wanted peace.
We knew when the other was on the edge of breaking and we found the strength to hold it together for the both of us, We knew if the other wanted time out and would suggest going for a "walk" which often meant doing a couple laps of the car park till we could pull ourselves together again.

Our experience changed us, it may not be noticeable to others but we notice each others changes.. it has made us better parents and people for sure. It and has given us the strength to deal with whatever the future may have for us... one day at a time  .

Family life can be busy, stressful and tiring due to lack of sleep for two years and generally not having enough hours in the day. Most nights when Alex comes in from work our house is full of craziness... either happy hyper crazy or babies crying kids arguing crazy, whatever it may be Alex gets in grabs a baby from my arms and mucks in. 

So really all I wanted to say is HAPPY FATHERS DAY ALEX xxx

Reflection And The Need Of Change

Reflection And The Need Of Change

I don't think it is a coincidence that when I look back through my Facebook post from earlier this year I find my 'Owen starting school' post running parallel with my first 'Changing Places' posts.

As Owen started his very first term of afternoons at his Special Needs School, I wasn't really expecting the rush of feelings of loss and redundancy that I got.

For 3 1/2 years not only had I been his Mother, I had been his Carer and his Advocate.  Now I was handing over part of that responsibility to complete strangers for the first time. 
Having given up work to be Owen's full time carer. I felt that a part of my heart and of myself was being ripped away. I also felt unsure of how I was to fill the void.

Now do not get me wrong, I had plenty of things to do. Florence was at Morning Nursery,  so in the afternoons spending one on one time with her has been fantastic. But even that had it's limits, Florence loved her afternoon naps so no matter what ideas I had for us to do together, most of them were left undone.

I also still had a barrage of appointments to attend. Always things to do at home. It was just that housework and daytime TV were just not fulfilling enough.

With Owen starting school it really hit home that Owen was growing up. What became blatantly obvious was having a growing disabled child, opened up a completely new range of problems from a accessibility point of view. This was most evident on family days out during the festive period.


One of the major problems we have encountered is toileting. Owen can not use a standard disabled toilet, he still needs his pad to be changed. 
The trouble is he is getting too big for the typical baby changing units. Especially the small fold down ones. On these Owen legs go off the end. Not surprisingly as they are just meant for babies. 

What makes nappy changing even harder than just his size is the nature of the disability. Due to his type of Cerebral Palsy he has high tone in all his limbs, meaning they are tight and rigid. Adding to this the fold down tables wobble, this frightens him. When Owen gets upset he arches his back, uncontrollable arms flying everywhere. I have to hold him down in one hand, trying to calm him, while changing his nappy in the other. It is a nightmare.
If you really unlucky amongst all the drama you will accidently set off one of those Automatic Hand dryers.

The thing is there is a solution. The solution are call Changing Places or Spaces to Change for small areas. Both consist of Bench and Hoists facilities.
Great you think problem solved.
But no wait... no one wants to install these facilities there is just bout only 850 in the whole of the UK.
The more I looked into it the more I realised what a major problem this was.  I just did not understand why people were not jumping on this idea to install them where ever they were needed.

The more settled Owen became at school, the redundant feelings slowly faded away.
My need to do something positive was still at the fore front of my mind.
I needed to be pro-active in my want of change. 
 I have learnt as a special needs parent, you have to be willing to put up a fight for things you want for your child.

I read locally they were building new changing blocks as part of the local Cassiobury Park £6million restoration project.
I thought I would send a little tweet asking whether they were including Changing Places Facilities into the project.
to the right was my answer. 
I shared it on social media. The reaction was crazy. I was inundated with personal stories, pleas for help from other parents and offered support from a 14 year old boy who had just successfully campaign for a wheelchair swing in his local park who said he too needed these facilities.

Fuelled by a mix of Coffee, Anger, Frustration and  just wanting to do something positive for others this is where I would start.



http://www.mychangingplace.co.uk/

 

 

 

 

 

 

So that's Owen's first week (3 afternoons) at Nursery. Apparently he has settled in well & starting to enjoy himself.
He still got alot to get familiar with.

I finding the "letting go" & letting someone else take care of his needs hard. But like Owen I'm sure I will get there in time.
...
Having twins in two different nurseries at two different times was never going to be easy... It is at times physically & emotionally straining, With appointments for both coming up, makes me feel like I need a clone.

Florence also is finding the new routine hard to get her head around.

But all in all we are really proud of how well our brave determined by has settled in and can't wait to see what happens next. X

Flourishing Warriors Year In Review

 

 I know we could say this about a few years but 2015 has been particularly tough.
Here is a little review of what 2015 had in store for us. I have purposefully missed of all Owens routine appointments and therapies, but even so it will be a long read.

Jan - Settling into our new home, Lilly started new school. Owen spent most of January with chest infection after chest infection. Owen was measured for splints

 Feb - Owen received his leg splints.
Owen was diagnosed with Cortical Visual Impairment (CVI) and therefore registered as severely visually impaired.

 March - We started visiting Special needs schools and started the whole EHCP process.
Owen had a videofluoroscopy (swallow test) as was shown to have an unsafe swallow.

 April - Florence started Pre-School, which didn't go to well she had real separation anxiety. We did enjoy a fun Easter with family.

 May - It was agreed with Owens Community Paediatrician for Owen to have a Gastrostomony, so was put on the waiting list.
Owens Auntie Zoe did a Parachute Jump to raise money for Nascot Lawn Children's Respite Unit. She raised more than £500 which they brought a new squiggles mat with as that was one of Owens Favourite things.

 June - We had a EHCP meeting where all of Owens team came together to discuss his needs.
We attending a Neuro-Vision clinic at GOSH which was very helpful.

 July - Owen & Florence sadly said goodbye to EYSDC (Opportunity class) & Florence said goodbye to Pre-School.
Owen & Florence turned 3 and celebrating with a Superheroes and Princesses Party with their Gorgeous cousin Amelia who also turned 3.
Owen received his Snappi Wheelchair.

 August - Owen had a radiology Investigation in preparation for his Gastrostomy insertion the following month.

 Sept - At Owens pre-assessment for his operation we were told they found following his radiology investigation that he had Malrotation of the bowel, which is something he was born with, which was a ticking time bomb in case it developed into volvulus which is life threatening. At the already booked surgery date a procedure (Ladds Procedure) was performed to correct this as well as his feeding tube insertion.
Unfortunately a day after home Owen developed complications which lead him to be re-admitted for nearly 2 weeks more.
Amongst all this Florence also started Nursery, and when we were all home she settled in well.

 Oct - Was a lot of new visits from Community Nurses and dieticians. 

 November - A hearing test, eye test & we found out Owen got our first choice school.

 December - Admission meeting at Owens new school. Owen received weekly input from the Herts Visual Impairment team which will carry on at school. Lots of handovers from Owens old Therapists to his new School Therapists.
We sadly said goodbye to Nascot Lawn day services.

So what a year!!!
Would it be hard to believe it was also a very enjoyable year too. Here's to 2016 and many new adventures it may bring.. hopefully with a little less stress and more cheeky smiles.
Happy New Year From Us ALL xxxx

Merry Christmas 2015

We spent most of Christmas on the road travelling between families

Cutie Lil Florence on Christmas Day

Auntie Laura & Owen wearing their Christmas PJs



Merry Christmas

Florence was a brave but timid snowflake in her first Christmas Play

December 2015 - A sad Goodbye to Nascot lawn

Today was Owen's last ever day session at Nascot Lawn, it was really sad to say goodbye as they have been amazing.

Nascot Lawn came a little while into my special needs journey,
It was suggested to me while at Opportunity Class by a visiting Physiotherapist.
    
Nascot Lawns is a Children's Respite Unit. We had an opportunity to apply to attend a day care session one day a week.
 I decided it was a good idea not because I needed a break or because I was struggling, but because I thought I would be good for my very clingy boy to get used to being in others company, especially as in the near future was school. Another reason why I agreed was for Florence, it would be nice for me to spend some quality time together in a more mainstream settings. That's exactly what we did. We had great fun at soft play, trips to the café and girlie shopping trips.

Our referral went to panel and after Owen was accepted. 
On our first visit I was amazed by the place, they had all the equipment. They also had an incredible sensory room. Elaine the person in charge of day sessions was very proud to say was fundraised by themselves, she then showed me what looked like a cupboard old one was. Most of the all the staff were amazing. They were so caring and knowledgeable. I knew Owen was in more than safe hands.


Nascot lawn was my first experience of Owen being left alone somewhere with all & all his care & therapy taken care of by someone else. It took a bit of getting use to. The first time I left him I cried all the way home. I called my husband he said its a great place Owen will be ok. I knew this so I answered "But what about me?" that's when it hit me,  without Owen I felt lost.

It took time for my guilt of leaving him to fade, My pride and my acceptance that sometimes I am allowed to have a break.
 

This picture shows his Christmas decoration he made while there.





 

 Happy Halloweeeeen from the Skel'e'ton family

 

 

 

 

 

 

Spooky goings on in the park

 

 

 

Halloween feast at home