You Don’t Look Disabled…?

I haven’t wrote a post in while, I didn’t know what to write and realistically I didn’t have time to write. Some days I get so many strands of ideas but they never come to much because I don’t feel they are full blog worthy. I need to learn how blog better, to blog more. I am also aware that this post may seem like a bunch of ramblings.

I do enjoy reading other peoples blogs. Recently I have read alot of blog posts about those with ‘invisible disabilities’ feeling or experiencing that others not believing they actually have a disablitily. This can be when accessing a disabled loo or parking in blue badge even though they are fully entitled and have displayed a blue badge in their car. This is upsetting and so wrong. It did get me thinking about the ways people perceive those with either non visible and visible disabilities. Is there really much of a difference in the way you are treated?

In my own experience of having a son with severe physical disabilities and some disabilities that are not so visable we have our self experiences similar circumstances. It seems that even being in a wheelchair is not proof enough.

The Summer Holidays have shone a light on how much we as a family have to somehow prove my son is disabled

Constantly having to justify your disability be it ‘visible’ or ‘invisible’, be it a physical disability or a chronic illness in my eyes it is simply not on. It is just not nice and sometimes the way in it is done can feel degrading. I often wonder what the questioners must think? Do they seriously think I would lie that my child is disabled? Who would do that? I guess some people must do… Am I naive in thinking otherwise? there must be a real need for these constant checks. Although I still reckon far more people have disabilities than those who actually lie. So if that’s the case why ‘punish’ those that have.

Last time we used a Changing Place just saying he was disabled and needed to use one was not enough to gain entry. I constantly find myself going into my now well rehearsaled spill of diagnoses normally reserved for meeting new medical experts. I don’t think it is necessary to relay all this to ‘Fred’ in his office through the intercom. Then for ‘Fred’ to make a judgment whether you are worthy of entry. Popping to the toilet for everyone else is just plain easy but for others it is a full on mission. Firstly finding a Changing Places Toilet is near impossible with a little over a 1000 across the whole country. When you think you struck gold and found one the next mission is to gain entry. Hunting down a key, explaining to ‘Fred’ why your son needs Changing Places and no not the baby changers, can take 200x more effort. How is this equality. Yes I know many of you will say “Oh I rather they check then let any one in….” but checking can feel humiliating, your privacy truly invaded shouting out my son is doubly incontinent is just not nice at the age of 6, But what about when he reaches say 16 . I also wonder how an adult with a colostomy feels relaying this personal info over an intercom.

Maybe for the sake of fairness everyone should be scrutised to use every customer or public loo… Can you just imagine “Why do you need to use the loo madam” “Erm I really need a poo!!!!” See it just would not happen.

Owen is only 6 so at them moment he is in a ‘Snappi’ from Wheelchair services and I guess can be mistaken for a typical (large) buggy by some. Though his head support is a little bit of a give away.

On one of our days out there was a small peroid home to around my two younger girls wanted to go in, as did their Dad. We up to the door where two members of staff were dressed in period costume to greet everyone. My eldest and I wasn’t sure if we wanted to go in but I joined my Husband and walked up pushing Owen, My thoughts were to take a picture of the dressed up staff and the kids in front of the beautiful house. As we rolled up to the door, before we had chance to say hello we got told we was not allowed in with a buggy. I said it was a wheelchair not a buggy. The man insisted we could not come in due to the age of the House so buggies were not allowed in. I again told him it was a wheelchair and my son was disabled and therefore could not walk. The man and lady then told us in that case if O needed a wheelchair they had their own which we could use. but if we did need a wheelchair they had their own we can borrow. With Owen sitting comfortably in his own highly supported, especially adapted chair I started to get irritated. I started to explain that there own chair probably being a standard wheelchair would not be at all suitable for his needs. He would simply fall out. I could sense my girls wondering if again their mum was again going in ‘Warrior Mum Mode’ unfortunately they have witnessed this enough. After a few whispers they said if we could wait they would call their Manager. It was a hot day. I saw a nice shady garden next to the house, Owen would probably moan all the way round the house anyhow. So I suggested Alex went in with Lilly and Florence while me, Owen and Beth would look around the now even more appealing shady garden.

The garden was just as nice and pleasant as it seemed, we were again chilled.. That was until a lady started shouting at us. Not hearing what she was saying both mine and my eldest my first thought was maybe we was not allowed here.. or maybe not with a wheelchair… But she introduced as the manager and apologosed for the way her staff treated us, of course we were welcomed in the house they even had lifts we could use. She explained her staff had never seen “such a chair” pointed to it in such confusion like it was a spaceship. I thanked her but said as our family are probably half way round now we didn’t want to bother. I told her maybe her staff will learn from this and not to be so quick judge. I felt I had been accused that I was lying my son was in a wheelchair just so we didn’t have to get him out of a pushchair. In that moment it hurt.

As a family we do not want special treatment we just want fairness.

Maybe when my son is older, maybe his disabilities will be more obvious and less questions will be asked? OR maybe this is it, we will constantly have to prove worthy of assistance and accessibility. If that is the case than visable or non visable disability it does not matter the fight for true accessibility and full inclusion goes on and that fight really should be together.

I would love to hear your stories on the subject.

Young Carers And The Summer Holidays

https://www.actionforchildren.org.uk/news-and-blogs/press-releases/2018/august/three-quarters-of-young-carers-feel-lonely-during-summer-holidays/?utm_source=twitter&utm_medium=socialorganic&utm_campaign=&utm_content=july-youngcarers

I feel for my girls during the Summer Holidays, with their roles as Young Carers (something that I was not ready to accept they were till recently out of my own guilt. Admitting they were Young Carers meant I was some how failing them) they can not simply do they same activities as their friends, go the same places all the time and have the same selfish and carefree attitude that many kids their age have torwards the six weeks of ‘fun’.

I try not to burden them with Caring tasks, but they naturally help out. When Owen is upset they try and cheer him up, I ask them to keep an eye on him if I have to leave the room and to shout if his reflux hits again. They mainly have to sort themselves out between them if I am in the middle of something I can not pause.

But that is not what upsets me the most. It is more the fact of all the things they can’t do. Even a simple trip to the park can end in disaster if Owen is not in the right mood. I have tried to counter this. Owen seems to calm with his music on, so have been playing his playlist on my phone when out and about and it has been working. I Just brought Owen a little bluetooth speaker that can clip on to his Wheelchair we are yet to try it out.

Next week Alex is off work. We are not going on holiday this year so we wanted to plan lots of great days out. This was my task this morning. Yesterday I asked for beach ideas and many came up with some great ideas, some even had beach wheelchairs who many will know how much fun Owen had in these last year while in Cornwall.

This morning, as I am planning a day in London I was looking at train and Underground Stations with total no step access from entrance to train. The TFL Journey Planner said there was no such routes so I looked into each station, though I didn’t get much further than my home town. The lift a Watford Junction to the main platform to London is broken, on further investigation it seems that this needed lift has been broken for over a year. Instead of simply fixing the lift they now have a strange scheme of getting a taxi to pick you up from the front of the station drive around the back to the car park and getting you on the platform through a back way. This just seems wrong and stressful.

As I am only one pair of hands they have to step in and help with Owen and with each other. I have no other support on a day to day basis in the Summer Holidays. That is one of the reasons I am currently looking to employ a PA for Owen just a few hours a week just for that extra pair of hands. Yesterday the strain of lifting him and doing probably too many activities on the floor and up and down again took it’s tole on my knee ( Old injury from running in Feb) & I spent the evening miserable and in pain. It made me worry with a EVER increasingly growing boy.
*On another note we look like we are a tiny step closer to get Hoists fitted and the Bathroom extension done. As a visit was planned from a building company who will be completed the works along with a hoist company – though this was cancelled due to the boss being ill (one step forward to steps back)

I am really hoping that we can get to do some fab things on Alex’s week off and it all goes as smoothly as it can. I think we all deserve this at the very least. Especially my three amazing girls and my amazing boy.

*** Just to add before I go, I know I am guilty of posting lovely fun filled pictures on social media… but just make sure you know this is just a snap shot. The best photo of the day. A lot of hard work and planning has gone into being able to take such a photo and a little bit of luck. Please during the Summer Holidays do not feel pressure or guilt that your Summer Holiday pictures do not live up to those of others.

Remember….

Comparison is the theif of joy

Find the joy in your day no matter how un flashy it maybe.

End Of Year Reports

20180720_1521504682166889211062430.jpgSo that is it, another school year done and dusted. How can it be?

The end of the school year is rather emotional for many, their little ones moving up from reception to year one, key stage 1 to key stage 2 or that really scary transition from primary school to secondary school.  All I have had experience of, and having four kids with ages spread out from 5 to 15 many a milestone I have still to come again and again.

I still battle with this time of year and as a reminder of what I mean Facebook did that delightful thing of bringing up a past status from “On This Day”

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This was when I was 27 weeks pregnant with the twins. I had already been told I probably wouldn’t last my whole twin pregnancy and I would most likely deliver early at the end of September. In my mind this mean’t I had a whole 6 weeks to relax and spend some quality time with my two eldest daughters before the chaos of the twins arrived.  Little did I know this was not to be. The next week during a scan which we all as a family of four went to we found all was not well… I won’t go into it as I have written in depth about it before on here, (link at bottom if you want to read about it)  but it resulted in the Twins being born at 28 weeks.

Fast forward 6 years….

20180715_1541328730416143238659520.jpgOwen has left his beloved Rabbits Class and is moving into Ladybirds. This is his first move at school and although we are anticipating some slight teething problems at the start (Owen does not like change, new places and new faces) I am positive with his new-found confidence he will settle in fine. He has come on so well this year in so many areas, like I said his confidence has gone up and some sensory issues have lessened (although some new ones have appeared) He is communicating much more proactively be it by his facial expressions, vocalisation ( He can say the word “Hi” & “Hello”too) or by his communication switches, this is something we are going to work on over the summer holidays. He is bigger and stronger, His vision has improved (Something a horrid doctor said would not happen, but Owen has proved otherwise) we are excited to see where he takes us next.

20180622_1213227314081973764993179.jpgFlorence started the year worried about school, clinging to my arms at the door with teachers trying to convince her to go in. She started to realise she found things harder than most and this knocked her confidence a little. With support she has made progress and her confidence has gone up.  I now stand at the end of the path and she now skips in with a beaming smile on her face. Florence still has trouble with her communication and this is one of the things that really frustrates her. She will continue to receive support in all the areas she struggles with in year 2 and I hope with her determined nature she will continued to make great progress.

One thing that makes me sad is the emphasis on attendance. Obviously I agree that a childs attendence at school is important but reading on Florence’s report that her attendence has “room for improvement” is sad. As an ex prem she seems to have a lower immune system than that of her older sisters, probably also adding that due to the young age of the class that maybe basic hygiene is not up to scratch, she seems to just pick up any bugs going, most of the time this just manifests itself as a high temperature for 24 hours. Florence also has paediatric appointments to attend so this is something to take into account. Luckily Owens SEN school are far more understanding, I would hate to imagine Owen’s percentage. Unlike florence who when catches something has a high temperature for 24 hours, Owen takes on average up to two weeks to get better. Hence why I am really strict (and sometimes get cross) if someone is or has been ill coming into contact with Owen.

It is hard at times to see others celebrating grand achievements academically, not that I begrudge them doing so I do the same also, But when you know your children are going down a totally different path or maybe more of a bumpy path it does give you a slight pang of sadness I guess that things are not that easy for your child despite how much as a parent you try and help them. But as a proud parent you have to look for and give merits where they are due.

Born early at 28 weeks they had to learn themselves how to breathe, then how to feed “breathe suck swallow”. They are so strong, determined and fought so many battles that they have already achieved miracles and because of that fact no school report can match up to that.

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Posting of Old Blog Continued – The Doppler Scan that changed everything!!!

The Beginning

 

Superstar Sibling

A bit of a different post, this one is about Owen’s 2nd eldest sister Lilly.

Last Tuesday night Lilly took her Promise to become a full Girl Guide. She was so excited and very confident in doing so Lilly also had a glowing school report. Her school report stated she “Works hard & made good progress”

But what also shone out for me was the teachers report of her “Showing great kindness & care… in particular giving wonderful support to new member of class” Her new friend has cochclear implants and Lilly readily assists her friend without a second thought, just how it should be. She is always on hand to stand up and support all her friends.

I have a half written blog about teaching my children the importance of kindness (I promise I will try and finish it soon) but sometimes it is children who teach you these things and many an adult could learn alot from her.

Lilly is such a Sunny girl but with a FIERCE passion for doing the right thing. I glad her teacher noticed this.

Paper Memories

Having a clear out and came across a piece of old crumpled paper.

It was my list of names i had on me as I went to the hospital to be monitored for the last time at just 28weeks. As you can see the meanings behind the name is important to me. Also gives you a clue why my blog is called what it is.

Later that afternoon not long after having been told I was going to have to deliver (emerg c-section), I got that bit of paper out and alex and I with the two girls also sitting on the end of the hospital bed set to finalize their names.

I had just been told by the neonatal consultant they would be rushed straight to NICU. I felt so strongly that as I could not be at their immediate side I did not want to send them up to the unit alone and nameless.

So between the four of us, we decided on the twins names. I wrote it on a tiny scrap of paper and made Alex promise that he would make sure everyone in NICU knew their names.

My mum soon after came to take the girls and I was rushed upstairs.

So on 27th July 2012 as everyone else was settling down to watch the Opening Ceremony of the London Olympics.
Owen Harvey and Florence Ella were born.

The Cruel Twist In Our ASDA and Changing Places situation.

You have probably already seen my posts on both Facebook and Twitter regarding me feeling completely outraged and disappointed regarding the lack of Changing Places at my local ASDA Store Watford.

https://www.facebook.com/flourishingwarriors/?ref=br_rs&hc_ref=ARSuiVMZocD8qs0dNpvMr9kSsngreUZ7cLGWTB-I-0E5diSN0MEkXt9SlfkqProlkZA&fref=nf

https://l.facebook.com/l.php?u=https%3A%2F%2Ftwitter.com%2Fflo_warriors%2Fstatus%2F991351168092827649%3Fs%3D19&h=ATNbnyyv34vP7tV0freMx_YQ81PbMHvV1r2JPebYUo-o55UxlYOyLIuDdyKfGdB3CupuES6qDDAcFu8qieFcyHWI1yhYDGYwxI9fj9MQ56_mdPMnpQ

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To enable me to write my Formal Complaint I wrote down a timeline of events and correspondence, I thought it maybe of some interest to share just to outline how long I have been asking for Changing Places at my local ASDA store.

This is just a shortened down version of the main points and is not including all the auto responses, Twitter and Facebook posts;

*I first approached ASDA on 7th June 2016 outlining the need for Changing Places. As I didn’t get a suitable response I then again wrote to my local store and the C.E.O at the time Andy Clarke.

*On the 23/06/2016 the ASDA Service team responded on behalf Of Andy Clarke stating they were looking at installing Changing Places in ALL stores, but it was something they could not do over night. I was assured they would contact the planning team to try and speed things up regarding getting a Changing Places Toilet in my local Watford store.

*On the 22/09/2017 I noticed my Local ASDA was undergoing a major refurbishment. A perfect time to install a Changing Places facility that they said they would given the opportunity. I wrote again to my Local store and to Asda online making sure a Changing Place was in the plans.

*On the 26/09/2017 My local store got back to me confirming that as part of the major refurbishment the toilets were getting a revamp, BUT NO CHANGING PLACES were to be installed.

*On the 09/10/2017 I sent Sean Clarke the then C.E.O of ASDA a formal complaint regarding the lack of Changing Places in the refurbishment plans and therefore not making any reasonable adjustments.

*10/10/2017 ASDA Executive Relations responded and confirmed they would now be putting a Changing Place Facility in the Watford store as part of the refurbishment.

*11/10/2017 This was plainly confirmed in another email from Executive Relations.

*25/04/2018 a whole 6 months after confirming a Changing Places would be installed I asked both my local store and the ASDA Service Team where was the Changing Places?

*26/04/2018 ASDA Service Team email me back to confirm they have spoken to the Store and said they were told the refurbishment of the toilets and Changing Rooms have all taken place and all is now open.

*26/04/2018 I ask again whether they truly mean a Changing Places with Bench and Hoist facilities.

*27/04/2018 ASDA Service Team confirm work has all stopped at the Watford Store and the Changing Places is there.

*27/04/2018 I call Customer services in store myself, speak to a lady who has been liaising with the ASDA Service team and she confirms a Changing Place is there. I ask her has she seen if a Bench and Hoist are in the room. She admits she has not looked in. I ask her to go and have a look behind the door and call me back as I do not want to take my son to an ASDA store thinking there is a Changing Place only to be found there is not. She hangs up but fails to call me back.

*30/04/2018 I go to the Watford ASDA store myself armed with my son’s radar key and open the door to find NO CHANGING PLACES.

*03/05/2018 A second Formal Complaint is sent.

 

 

screenshot_20171012-1403311226401997.jpgThe fact that ASDA has been aware of the Changing Places campaign and has indeed installed in a few other stores shows that they have anticipated the need for such equipment and facilities and have failed to make adjustments in anticipation of a disabled customers need within their service and within my local store. This is particularly true as they have just undergone a major refurbishment where the Toilets were revamped.  This would have been the ultimate time to installed a much-needed Changing Place toilet.

 

20180501_092352200575943.jpgWith sharing on social media I have had so much support so thank you. I have had qutie a few comments regarding the pictue I took of the Standard Accessible Toilet which is there and how ASDA Doesn’t even seem to get that right. Comments like It is too small for their Power Wheelchair, The Flush is way too high and most distressing is that the Red Emergency Cord does not reach the floor. If ASDA can not get the basics right no wonder they are struggling to get their head around how Changing Places.

Some of you my recall a previous Blog Post in which I praised ASDA for “Doing The Right Thing”

Why ASDA Know That Mum’s Are Always Right

Not only do I feel outraged and dissapointed for my family, I feel disappointed for all the local people who were so thankful that a Changing Places was coming to their local Supermarket. I am left feeling embarrassed and deeply sadden that what I said was happening, a sure thing,  may not be happening at all.

Lesson learnt – “Do not believe what you are told unless you yourself physically see it.”

 

 

 

 

 

 

 

 

 

 

How Preparing To Tube Feed Saved O’s Life In A Unexpected Way

It was one of those mornings when you pop onto Facebook and on their “On This Day” feature an old post from 3 years ago popped up.

I read it and realised how much had chamged since then. I remembered that a few weeks after this post the news was completely different to how I thought it was.

Below is the original post from 20th March 2015

After a long day I am finally sitting down to update on Owens videofluoroscopy. Too be honest it wasn’t the best result. Eating yogurt type foods Owen coped well, although he sounded wet after and didn’t cough to clear the xray showed he swallowed it safely. His thickened milk however was a cause for concern as the xray showed a small amount went down the wrong way towards his lungs. The reasons behind this need further investigation and they will look closely at the video in slow motion to fully understand why. Will then recieve a detailed report. Until then the plan is to further thicken Owen’s milk and only let him have small sips at a time, all that have seen Owen eat will understand this is no easy task as he loves his bottle and hates stop gaps (he gets very upset and sometimes holds his breath) but we are very committed to gently work on this. We understand that this is not the worse result we could of had. Thanks for reading and hope you have a lovely weekend.

Today I wrote an update on Facebook about what exactly happened afterwards till now. I thought I would share it here also.

***** Felt compelled to write this post after the old post popped up on my timeline*****

On closer look the results were infact much worse than originally thought.

The hard decision we made was to go ahead with Owen having a Gastrostomy (feeding tube in his stomach) I felt like I was failing him.

The waiting list for Surgery was long. During this time we had many a scary episode. This proved the need, but didn’t make me feel less like a failure. Owen was rapidly losing weight also.

***** THE FACT IS THAT THIS SAVED HIS LIFE… in more ways than one….
During the pre admission process it was found that Owen had a potentially life threatening condition. He had Malrotation of the bowel. In the most simplest of terms it means intestines, bowels are not fixed in the right place. It is a condition he was born with. The life threatening part is if it becomes volvous (twisted bowel) if this is not treated as a surgical emergency it is life threatening. We were in shock, we felt it was a ticking time bomb and felt extremely lucky to have found it in time.
Obviuosly surgery to correct this (called a Ladds Procedure) completely overshadowed Owens Gastrostomy which was still going ahead to be done at the same time.

Surgery went well. When asked the Surgeon said the bowel had some kinks in it, it had probably twisted at some point to a slight degree, but had untwisted it self. It was a miracle.
Recovery went well, despite a few set backs due to his gastronomy at the time.

Three months after surgery Owens temporary Malcot tube was changed to a Mic-key button ( a different type of feeding tube)

Coming up to 3 years on, we have never looked back. It was the best decision we ever made. (Even without the fact it highlighted his life threatening condition)
Almost immediately we saw rapid improvements not only in weight gain, but in progress and happiness.
We find it really easy to manage all aspects of the mic-key button.

At the moment Owen is totally tube fed for all his needs. Due to reoccuring Chest Infections he can not have anything oral at all, he just can’t cope. We are finally ok with this. Owen still loves the social aspect of dinner time and joins us as a family at the table while having his feed. He gets to play toys at the table and join in with all the family madness.
Some people feel cruel eating in front of him. But he doesn’t even seem to realise he is missing out on anything, so I guess it is just that person’s problem of coping woth their own guilt more than an actual problem.

Tube feeding is now just part and parcel of our family life. Things do have to be planned around his feeds. We do have to cope with stares of strangers from time to time…. especially if my bag spills over and loads of syringes roll around me. Or if they catch me attaching his extenstion tube to his Mic-key button…but their look of horror amuses me now. I am just feeding my child.

It is funny how an old post can remind you of how things were before. Show you how far Owen has come and how far you have come as a parent.

Owen thriving today

Is There Such A Thing As Hospital Anxiety For Parents?

Hospital Anxiety – Is there such a thing? I personally hate hospitals. We are so lucky that we haven’t had many hospital stays compare to others, but we have lots of hospital appointments.

  • Some appointments are just routine – Mainly myself updating the professional.
  • Some appointments are positive appointments where we hear some good news, or will find something to new to try or the best ones where we celebrate progress.
  •  Then we have those appointments, the dark ones where you find out bad news. You may receive yet another surprise diagnosis to add to the list

Those dark appointments are the ones that haunt me during sleeping hours. They overwhelm me on the days leading up to the next appointment. These dark appointments shadow over me and almost suffocate me when sitting in the corridor or a waiting room.

20171108_1418361317746550.jpgI hate hospital corridors. The smell of hospital seem some how stronger in those corridors. What don’t I like about corridors? I have spent far to many hours walking or in some cases running up and down corridors. When the Twins were in NICU walking down the long corridor to the unit made me feel sick, not knowing what you may find, what the day would bring. Or rushing down the corridor after an emergency situation. Walking back up the corridor was equally as painful, leaving your babies behind was heart wrenching. You sit full of apprehension in those corridors (or waiting room) for your child’s name to be called. The worse is being put back out into that corridor after a new development is found, waiting for a higher professional to confirm or explain a further new diagnosis. You sit there in shock trying to comprehend what you have been told, while prying eyes of strangers stare at you, as you fight back tears to keep it all together.

I hate losing myself in front of professionals. In my experience if you do that, then the Doctors treat you differently. They fear those tears. They stop being so blunt, they try to sugarcoat information in fear of having an uncontrollable parent on their hands.  I do prefer bluntly honest Doctors (But obviously compassionate and kind too) who say it how it is. These Doctors seem to also like plan. I cope much better when a plan is in place. I am a girl who likes a plan. Unfortunately Owen is a boy who likes to surprise us (Not always in a good way) who seems to always have a twist in the tale. Some days we feel ready for this or just pretend we are. Being strong in those moments is exhausting.

So as Thursday approaches, The day of Owen’s upcoming Hip abductors release surgery, I am feeling all the anxiety start to build up in my body to the point of eruption.

20171108_144345736746725.jpg*****Just to note    –    I will blog about this surgery and experience in some way ,at some point. I also truly realise that Owen’s Hospital anxieties totally trump mine and will also write about that too. I just wanted to take a moment to address my own anxieties because a) Writing  helps me b) Maybe someone else may benefit from me sharing this. Also I am not putting my anxiety on a par with those who have a medical diagnosis of  Anxiety.

 

Trying to break down what I am most worried about may help me keep it under control. 

  1. Obviously the main worry is the operation itself. Owen going under anesthetic. When he was tiny he didn’t cope well with this and went to ICU. I am trying to draw strength from his last Operation which was Major Surgery to fix his Malrotation of the Bowel (another shock diagnosis) as well as his Gastrostomy Insertion. Here he didn’t end up in ICU but to HDU. Knowing he is in a good place health wise, he has put on all his previously lost weight must be all good. Argh!!! even writing all this is making me anxious. Maybe writing before the event is not the best choice. I leave this here for now.2. Getting home. I always seem to be jinxed about getting discharged. I don’t mean when we are not ready to go home. I mean the period between when the Doctors say we are ready for discharge and the actual official discharge happening. We always seem to have delays. We are either waiting for something to happen i.e To be signed off for Feeding Pump Training. The doctor forgetting to sign the discharge form, Or something else is not ready like Equipment not being ready for home, waiting for medicines to come through. The equipment not being ready may play a major part in a delay of us coming home this time. I spent most of yesterday trying to make sure this won’t happen.3. Sleeping overnight at hospital; Those chair beds are not comfy,  Lights out a 8am, You have a poorly child to look after in very hard circumstances, You can’t leave his side as you are not only his parent but his carer and advocate. Owen’s hospital anxiety and his sensory issues go through the roof when he is in pain which is very upsetting. You also pray for nice staff. I have to say I normally get on so well with all of the staff that look after Owen and they do indeed make my stay so much easier. They are on the whole amazing, But you always do get that one.

20180203_095402_001547724542.jpgAs a Mother to four, I hate to be away from my other three girls. I always feel like I am letting them down and my heart completely feels split four ways. Organising child care can be stressful and always takes so much time and planning, despite however much is planned it still always feels all up in the air. I know my girls benefit for their routine to be as normal as it can be. With all their clubs this is a hard task. This time however Lilly (10) has been particularly upset about her brothers upcoming Hospital stay. I have had a chat with her school and they are going to arrange some counselling for her. I think this maybe a way forward in general.  It is easy to forget how hard it must be for them to have a sibling with special needs. They all have to endure so much on a day-to-day level that when changes like this come in I do worry how the extra stress of it all will affect them.

I am not sure I can write much more on this, in fear of working my head into a complete frenzy. I will keep you updated on our stay.  I am sure you all send your best wishes to Owen.

 

Sunny day’s and Inclusive Play

So Saturday was the first sunny weekend we have had in a while. The big girls were having a sleepover at their Aunties.  Alex was working in the morning and I was home with the Twins. On the way home Alex called and decided that we was going to abandon our boring plans and go to the park instead. The weather was so good and we hadn’t really been out for a while as a family, partly due to the weather, myself being ill in January and now my knee injury (Which is a lot better now, thanks for asking)

We went to my favourite park, the park of my childhood and now the park of my children’s childhood Cassiobury Park in our home town Watford Hertfordshire

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The Lion King Tree

20180217_1401531172133640.jpgA couple of years ago my relationship with this park was under fire. A grant from the lottery was going to be spent making great improvements to the park. Unfortunately at the time the improvements didn’t include any thing inclusive and therefore did not meet my families needs. I found out the original plan to install a Changing Place Toilets was to be scrapped due to budget cuts. Our beloved “toddler” playground with a wheelchair accessible roundabout in along with other sensory play equipment was ripped out without a plan to replace like with like. It was heartbreaking.

So here is where my campaigning journey began, it was personal. It was a learning experience. It was a journey (if you pardon the x-factor type pun)

I have visited the park many times, all through my campaigning, the building works and even visiting after completion. But today was the first time I had fully appreciated the magnitude of my campaigning work. (I have documented much of this journey on my blog before)

img-20180218-wa0001197705541.jpgWe arrived at the park and after putting Owen in his chair from the car realised Owen (really) needed his nappy changing. previously we would have had to either change in the back of the car, on the grass or on the toilet floor. Not today, today we simply carried on and walked towards the newly built Hub building which housed the new Changing Places toilet. In case you go, it is locked but the Lovely “Daisy In The Park” cafe also housed in the hub have the key. This took a matter of minutes to retrieve.

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Thumbs Up For Changing Places

Sometimes when a new Changing Place is opened a Grand Opening  takes place, usually including a picture of whoever has campaigned for it to be open and usually giving the Changing Place thumbs up. But not with this one. Today was the first time while using it I remembered to take my own ‘Thumbs up” Changing Places picture. As you can see it is not entirely perfect. “How lovely” I thought it would be to take a picture of the Twins. Florence did manage to do the thumbs up, But as you can see Flo was having a particularly diva-ish day. On the way to the park she did tell us she wished she could travel by helicopter. Owen wasn’t really in the mood for photos at that moment either. I mean just having you nappy changed is not something to look excited about. I think he just wanted to get back outside and play.

So Play? Another one of my small achievements.

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Using your Twin sister to wedge you in because lack of a harness has become our thing (Which they will soon outgrow)

The council had added on to the current main park with more Inclusive Play Equipment.  The council had replaced the ripped out wheelchair roundabout with a brand new one now placed in the main park. Unfortunately I did ask for a Stay in Wheelchair Swing, but this was not to be in the budget. I have got assurances that if the money was raised there was room left for one to be installed. At the time, way back in June 2017 I was all ready to start a fundraising campaign for one, But that was until the closure of my son’s beloved respite centre Nascot Lawn came to light. My energy was then thrown into campaigning to try to #SaveNascot I started a petition and got a little swept up in it all. At the same time our own home adaptions works were again in trouble. I thought my fundraising efforts may have to go into my own cause rather than a public one. I know us Special Needs Mums are supposed to have unlimited resources, but I didn’t really have the energy to take on something else. (If anyone out there wants to sponsor a Wheelchair Swing or fancies starting fundraising for this please feel welcome to.)

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Look how happy he is…. he loves having fun just a much as any other 5 year old.

I did feel a tinge of deflation while in the park that despite my best efforts it was still not enough. Apart from the Wheelchair Roundabout, the bucket swings and a couple of sensory items Owen was still nowhere near equal in the amount of fun that could be had. Until places plan from a wheelchair users perceptive, till they ask them what is needed this will never be put right. It pains me that the message of inclusive playgrounds still has not got through. It angers me how many parks are still updated but yet still are non-inclusive. As just one Mum I can’t campaign for each and every park, just like I can’t campaign for each and every building to have a Changing Place Toilet, But I will do what ever I can.  My fight for inclusion, accessibility will continue. I hope for some more positive results soon to make days like yesterday simply easy.

 

Let Owen Play!!!! (part 1)

Let Owen Play!!! (Part 2 )

How Things Can Change

Let Me Play – A Summer Of Inclusive Fun