The Girl She Was Always Meant To Be…

8 years ago, my beautiful daughter, Flossie, made her arrival into the world. I knew that my world had changed, she was the one that made me a mum. I jumped into the new world of baby groups with relish, we wiggled and giggled, made new friends, watched as their babies achieved their milestones and waited for my daughter to do the same. And waited, and waited, and waited…

My daughter, for her part was doing her best, trying to sit, but unable she spent hours upon hours upon hours doing the equivalent of baby abdominal crunches, her legs hyperextending before her. It was not until the 6-9 month health visitor check that it really began to be obvious that Flossie was unable to do things that many babies less than her age did with ease, and we were finally referred to a paediatrician. On examining her, he said that it was likely that she would have physical and learning disabilities, but we would need to watch and wait to find out how severe these might be. She was labelled as having global development delay (an umbrella term for a child that is not meeting their milestones), this would be the only label that she would have until she was 7 years old.

We were offered no support at this time, we were left to walk out of the appointment into a whole new world, no leaflets, no contact numbers for people we could speak to, it was very much a case of being very much left to fend for ourselves…

We began to get more and more appointments. Flossie was already under the audiologist as she consistently failed to pass the standard hearing tests (she would be making too much noise, or she would pull the earplugs out, or be too unsettled to try). But now we were also seeing the physios, occupational therapists, we had portage early learning for a few months, speech and language therapists. She had tests done, she was prodded and poked, bloods taken none of which provided a satisfactory answer as to why she was missing her milestones. We were eventually seen by a geneticist, who took pictures, and gave us information regarding the Deciphering Developmental Disorders (DDD) project. We were given sample pots to spit in and sent them off. It would still be a few years before we would get a result, and there are many families out there that are still waiting.

Whilst all this was going on, we still attended the playgroups. People started asking what was wrong with my child (the phrasing of this still bothers me today, I would turn it round and say, Do you mean what condition does she have?). To which then I would have to explain that we had no diagnosis, but that she was delayed in meeting her milestones and was still undergoing tests. People were surprised that the doctors were unable to give us answers, and often would give us their own opinions…

Life continued, the tests diminished. We welcomed another child, Ben, into the world. We discovered a support group, SWAN UK that supports all those families who have undiagnosed children, who have been incredible in letting us know that we are not alone, and who gave us the opportunity to meet other families who were in exactly the same boat, and going through the same challenges. My daughter remained a SWAN (Syndrome Without A Name), for another couple of years.

Then last year, the almost unthinkable happened. After waiting for 7 years, we finally got a diagnosis. We were called in to see the geneticist. A result had come up from the DDD study. Flossie was diagnosed as having Baraitser-Winter Syndrome. There were only 50 documented cases worldwide at that time, and of those some have a different variant to Flossie.

So has a diagnosis changed anything? Not really. We have a label. But because it is so rare, we still have no real prognosis as to how this will affect her in the long-term.

We know that it occurred spontaneously in her (de novo). But,she remains the same girl as she was the day before we got the diagnosis. A happy little girl, who loves horse-riding, Brownies, the wind in her hair and the sand between her toes, she is the girl with the infectious giggle. The girl she was always meant to be, who we love to the end of the world, and always will.

I wrote this blog for SWAN UK as part of Chromosome Disorders Awareness Week in 2018. Please check out their website, they are an invaluable charity who support families with undiagnosed children who have suspected genetic conditions.

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Making A Promise…

Flossie has been in the Brownies for about a year now, and recently it was her turn to make her Brownie Guide promise. For most mums this would have signalled a week of getting their daughter to memorise the Brownie promise and law. But how to achieve this when your daughter is not only non-verbal, but also doesn’t do Makaton…

While Flossie is getting better at communication it is mostly on her own terms, tugging at our trouser legs is generally a big hint that she wants to be picked up, or if she’s in her wheelchair, she’ll get hold of our hands and pull them towards her. If I give her a choice of puddings then cake is always her favourite, followed by jelly and as a last resort she’ll eat fruit puree (I really can’t fault her for this, I would make the same choices!). But making a statement of intention or a promise is beyond her capabilities, but we did kind of make it happen…

I borrowed one of her communication switches from school and recorded the Brownie promise onto it, and put a picture of a Brownie Guide badge on it to signal what this was for. The night before I introduced her to it. She thought it was quite funny and kept pressing the button which meant that it kept stopping and starting, I actually began to worry that her promise might take about 10 minutes at the rate she was going!

On the actual night though, all went to plan. Another Brownie skipped round the circle of the group with me and Flossie in tow, we stopped at the leader, Flossie was span round in her wheelchair, and then she pressed the button, cocked her head and listened while she received her Brownie Guide badge and officially became a member of the Hedgehog six. One very proud mummy here and a lesson for the other Brownies who will have learnt a little more about communication devices.

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Dear NHS – Please Provide Toilets That My Daughter Can Safely Use

Dear NHS

Disabled toilets in the main are completely inaccessible for my daughter, she is unable to maintain a sitting balance and is incontinent which means that she requires a changing bench and hoist in order to be toileted. She is just one of approximately 250,000 people in the UK for whom this is an issue.

The majority of hospitals and other health care centres do not cater for people like my daughter when they are visiting out-patients departments, or visiting friends and relatives. Usually only a standard disabled toilet is provided, this means that often the only option for her, and others like her, is to be changed in an inappropriate place without appropriate equipment, thus leaving her and myself open to acute injury. While this is definitely a health and safety issue, it would be against all advice given regarding moving and handling techniques if she was an inpatient in hospital.

The Equality Act of 2010 states that reasonable adjustments have to be made for disabled toilets to be accessible. I would say that it is never reasonable for a disabled child, teenager or adult to have to be laid on a public toilet floor to be changed which is often the only option available to them and their carers, other than leaving them sitting in their own body waste for prolonged periods of time. It certainly flies in the face of infection control protocol, can contribute to pressure ulcer formation, and delay healing when pressure ulcers are already present. It means that the most vulnerable members of society, who are likely to be frequent visitors to health care settings due to their pre-existing conditions and who are often also immuno-suppressed are being treated as second class citizens with a lack of dignity and respect because they are unable to fulfil a basic need, that the rest of us take for granted, in a safe, humane and timely manner.

I’m asking you to look at what facilities you have for outpatients and disabled visitors at your hospitals, clinics, GP centres and other health care settings. I’m asking you to consider installing a Changing Places toilet (with changing bench, hoist and enough space for carers) at the earliest opportunity, suggested as best practice for healthcare settings such as hospitals, health centres & community practices under BS8300/2009, and now also mentioned in HBN 00-02.

Please remember that you have a duty of care, not only to your inpatients, but to outpatients, their carers and their significant others. Please help provide Changing Places toilets, for the dignity and respect of outpatients and visitors at all your healthcare settings.

For more details regarding Changing Places toilets please click this link

http://www.changing-places.org/

Yours sincerely

Lorna Fillingham

Please sign the petition.

My 7 year old Disabled Child is NOT a Baby

This might be a weird thing to have to declare, but it seems to be something that I have to tell people on a regular basis.

“My daughter is 7 years old, she is NOT a baby” 

Although my daughter is a wheelchair user, she is obviously not baby sized. Granted she is small for her age, so you might actually think she is 5 or 6, but certainly not a baby.

And yet, wherever we seem to go, whenever I ask if there is anywhere that I can change my daughter’s nappy (she has severe learning disabilities which means that she may never be toilet trained), we are nearly always directed to the nearest baby changer. Often with a maximum age or weight that my daughter exceeds, and which is therefore too dangerous for us to use.

Ideally what we are after is a Changing Places toilet, with adult changing bench and hoist. My daughter could safely have her needs met there, but there are currently only 1060 registered Changing Places facilities in the whole of the UK. A situation that I am trying to change, you can sign and share my petition here.

Changing Places toilet facilities have been recommended in British Standards in large public buildings since 2009. Yet I have been directed to baby change facilities in recent times at a huge shopping centre, at a museum that was renovated at huge cost last year, and still as of yet there is no Changing Place toilet facility at our local hospital where my daughter has most of her appointments. It really is time for change. Please do sign the petition, and if you’re on Twitter then please retweet this tweet to your MP asking them to support the Changing Places campaign. Thank you

A Modern Christmas Carol…

It was a cold and wintry night as Scrooge sat in his counting house counting out all of his money. He’d made profits last Christmas as all the major retailers had. But Scrooge wanted more.

In the corner Bob Cratchit slaved over the paperwork. His thoughts were at home, where his son Tiny Tim was ailing. The daily struggles of having to carry and lift their disabled child were taking the toll on his poor wife at home. The family were particularly struggling when they went out, as even at the big shops there were no toilets that provided for Tiny Tim’s needs. Tiny Tim needed a Changing Places loo, with a changing bench and hoist, without these he had to be laid down on the toilet floor and have his nappy changed. This was no good for Tiny Tim or his mum. Mrs Cratchit’s back ached everytime she had to lift him out of the wheelchair, but her heart ached even more. “Surely someone must care and put an end to this situation”, she cried. But her cries went unheeded, even though she spoke to the business owners, they all chose to turn a blind eye. While Tiny Tim’s health turned from bad to worse and any germs festering on the toilet floor could be the end of him. Tim was also beginning to feel that he was worthless, surely he deserved better than this…

Bob plucked up courage, cap in hand with head bowed, he walked over to his boss. “Please Sir”, he stuttered. “Please would you install a Changing Places toilet, in your very large store?”. Scrooge stared him down: “Bah humbug! I will do no such thing. Why should I spend our huge profits on your disabled child? Now get back to your work you snivelling wretch”.

Bob returned to his desk, tears rolling down his cheek, he felt beaten, no-one would listen to their situation, NOBODY cared.

Evening drew in. Bob went back to his family and told his wife that he felt he had let her down again. In his huge mansion Scrooge retired to bed.

The clock chimed midnight, and a ghostly chill fell on Scrooges bedside. The Ghost of Christmas Past turned his steely eye on Scrooge. “You don’t need to provide these toilets, people with disabilities rarely come out shopping, no-one needs to provide for them. Whatever will they think of next electric wheelchairs?”. He wafted out. Scrooge tossed and turned and drifted back to sleep.

Another hour passed. The curtains blew and the chill once again took over Scrooges bedroom. “I am the Ghost of Christmas Present. There are a lot more people with disabilities visiting us these days, all these mobility scooters and electric wheelchairs seem to have made a change, and they all have money to spend. I think though that this year we will make a token effort with the Changing Places toilets. Just put one into one of our many stores and say that we’re trialling it, that should fob any whiny Cratchits off, lets put it at the other end of the country though, we don’t want Bob to feel that he’s achieved anything”. With that the Ghost of Christmas Present chuckled to himself as did Scrooge.

Now traditionally, a further ghost visits. But in this story, the future is down to you. A lack of appropriate toilet facilities for disabled people in the UK affects one in 260 of the population. The situation Tiny Tim and Mrs Cratchit found themselves in is happening in towns and cities all around the UK every day. Currently this means that people with disabilities are being changed on toilet floors or in the back of cars, or left in soiled pads for prolonged periods of time or quite simply are unable to go out at all. Ikea and Wetherspoons are the only businesses that have committed to providing more Changing Place toilets in their premises, that would have enabled Tiny Tim to use the toilet in a dignified and humane way. If these businesses can do it, then so can others if they care enough.

In total there are only 9 supermarkets with Changing Places toilet facilities in the UK, many large shopping malls also don’t have these facilities. Campaigners are fighting for change. Up to now businesses have chosen to turn a blind eye to the inhumane situation that their customers have found themselves in, despite repeated requests for them to provide these facilities. You can help bring about change. Please sign these petitions, calling for supermarkets, shopping centres and other retail outlets to provide these facilities. The more awareness, the less that we can be ignored.

Petition calling for Changing Places toilets to be compulsory in shopping centres and other large public buildings.

Petition calling for supermarkets and other large retailers to include Changing Place toilet facilities.

Make everyone’s Christmas a happy one, Thank you x

 

 

Lucy At Home

Even Our Hospital Doesn’t Have A Toilet That We Can Safely Use

My seven year old daughter needs the loo, nothing unusual there, we all do on average 4-6 times a day, more so if you’re a small child. Most places we go there is a loo that we can use, if there isn’t a public toilet available when we go out, then we nip somewhere to eat and use their loo while we’re at it. Pubs, cafes, cinemas, supermarkets, theatres and shopping centres all provide toilets for their customers. I mean who would visit if they didn’t? There would be an uproar! However they do not provide toilets for my daughter.

 Even my local hospital doesn’t provide a toilet that my daughter can safely use.

Now I bet you are thinking that I live in a 3rd world country, but no I live in the UK.

My daughter happens to have physical and learning disabilities. She is a wheelchair user, unable to stand or walk unsupported. In order to have her continence needs met then she needs a Changing Places toilet facility, which has a standard toilet but also has a hoist and adult changing bench. Currently I can lift her out of her wheelchair, but one day that will change, she is only going to get bigger and heavier. Currently I do a risk assessment on the baby change facilities available, will it take her weight? Do I risk putting her on there? Can I risk leaving her in a wet nappy if I don’t think it will take her weight? And some days I have to just have to grin and bear it, kneel on a public toilet floor, lift her out of her wheelchair, stand her against me and hope that her legs don’t give way and change her nappy that way. Luckily she does have some muscle tone, otherwise it would be her laid on the toilet floor…

There are an estimated 250,000 people in this country who have the same problem as us, along with their families and carers. People who are living with cerebral palsy, motor neurone disease, who have an acquired head injury or those whose mobility has suffered due to cancer. Children, teenagers, adults and pensioners. Many with low immune systems, or with invasive equipment such as feeding tubes and catheters. Their carers having to use manual moving and handling techniques that are considered too dangerous for nurses and paid carers to use in hospital, and yet there is little choice out in the community for carers, paid or unpaid. For those that are unlucky enough to be too heavy to lift, then the choice is to sit in an incontinence pad for hours at a time, or not to venture far from home.

For those that would say I would never lie my child on a toilet floor. Remember this. There are just over 1000 registered Changing Places facilities in the whole of the UK. Many towns and cities do not have a single facility that my daughter can use. There are only a handful of supermarkets in the whole of the UK with these facilities, we all have to shop and even with the power of internet shopping things get forgotten and are needed.

Last year there were less than 40 hospitals in the whole of the UK with a registered Changing Places toilet facility, obviously this is somewhere we would love to avoid visiting but sadly is somewhere we have to visit on a very frequent basis. It means that when we are visiting outpatients’ departments or visiting relatives, there is simply nowhere that we can “go” with dignity.

Not one single person on this planet can opt out of the need to use the loo, and when nature calls we all have to answer.

I want my daughter to be able to live a very happy and fulfilled life, to truly be a part of her community. She already is a member of her local Brownies, she loves horse riding, she attends mainstream as well as SN school. She loves going to the theatre, to country fayres and just being out with her friends and family.

But I worry constantly that she is slowly going to disappear from her community, all through the lack of toilet facilities that she can use.

One day she is going to be to heavy to lift, one day we will just not be able to manage anymore.

I have written to to the Prime Minister to various Government departments. Change is very slow in happening…

My own council have been very supportive and have increased the number of Changing Places facilities in the area from 2 to 9, with more to come with new developments and renovations.

I have written to every council in Great Britain asking them to do the same, I have emailed every hospital trust in England asking them to include these facilities for visitors to their hospitals. I have a petition calling for Changing Places facilities to be included in new large public buildings, please sign and share it.

Inclusion means much more than building ramps. If we’re going to have an inclusive society at least build the very toilets that EVERYONE can use, don’t let the most vulnerable end up on the toilet floor…

How can you Help?

If you have had similar problems when visiting hospital then please make a complaint at your local PALS office and also share your views with Healthwatch .

Please contact your MP if there are a lack of facilities in your area.

Sign and share this petition

Above all, please don’t think that you wont be listened to, the more of us that speak out, the harder we are to ignore…

Eureka, Children’s Museum – Where Inclusion Happens…

Well, we have had a fabulous day out today. It didn’t look promising this morning. Ben had a full blown sobfest when we mentioned that we were going to a museum (he loves museums, he just wanted to go to our local one…). He was also upset that it wasn’t yet Halloween, another full week to wait for that one mister… Anyway, all of that commotion aside, we set off on a journey down the motorway, to Halifax, home of Eureka, the national children’s museum.

Ben had never been, Flossie last came on a school trip a couple of years ago. We were directed to the disabled parking, and found it was free for blue badge holders (yay!). We joined the queue to pay, which didn’t take too long to go down. Admission price paid (essential carers get free admission), we hired a set of ear defenders for the day for Flossie, which Ben immediately requisitioned for himself and then we started our visit.

We entered the Soundscape zone, where several individual sound stations were located, all wheelchair accessible. Everything had lots of buttons, nearly all of these buttons made a noise or lit up lights, Flossie was in a very happy place indeed. The more popular machines were impossible to get close to, it was half term, it was full of exuberant kids, we did come back later in the day when it had calmed down a touch and got to have a full, proper explore.

A small walk away, we explored the water fountain, and found a hurricane simulator. Well we couldn’t turn down that opportunity, Flossie LOVES the wind in her hair… Col and Ben chickened out, we ventured in. I was quite glad that I carried Flossie in as in the end I used her as a wind shield, while she buried her head into my shoulder and giggled… Out we tumbled, looking flustered!

Then we sent the kids to work. Time was spent on the tills in the shop, then around to the cars and mechanics department where Ben took the wheel off a car and Flossie did a bit of driving. Into the bank where Ben used the CCTV cameras to search for the rest of us. All good fun, but the most important thing was that Flossie was able to participate too, it might have been in her own way, but there was no obstacles in getting her wheelchair into the places we wanted, and that included the cars on this particular floor.

Round to the cafe for dinner, and then to the Changing Places toilet, with adult changing bench and hoist, to get Flossie sorted. These type of facilities are extremely rare in our public places, but they are the only type of loo where Flossie can be sorted with dignity (so Thank You, Eureka, for including one).

Upstairs we went to the All About Me section. We stretched to find our arm span, and stood tall to find our height. We watched a couple of short films which as well as the usual verbal and visual content also had British sign language interpreters. More buttons to press. Lots of interactive stuff to show how our bodies work, how babies grow, how senses work. Fabulous stuff.

Further down the corridor there was a craft session on, we didn’t actually get involved with that but they had rugs on the floor and treasure baskets so it was an opportune moment to give Flossie some rollaround time out of her wheelchair before moving on again.

Into the bedroom, into the sensory tunnel, stars on one wall and an infinity mirror on another. Very, dark, I initially thought that Ben would refuse to go through, but then he made us go through about 5 times. Stopping only to play by a huge water tray. Flossie could access this too, and enjoyed splashing, and it was a good 5-10 minutes before she leaned far enough over to get her face into the water (it’s a Flossie thing…), at that point I quickly moved her away and showed her water where she couldn’t actually get access to it at a “how your toilet works” exhibit.

Back along the corridor to the Spark Gallery. Again very dark, but lots of interactive light and art things going on, Flossie was in her element again. Back to the lift, past a bat on stilts (yes, you did read that right, lots of Halloweenie stuff going on too this week…). Downstairs, in time for a bit of a monster show at the theatre. A gunky, gross exploration of the skeletal, cardiovascular and gastric systems done in a way that the kids loved.

Back to the cafe, another quick explore, a stop at the gift shop and then time to go home after what has been a very enjoyable day.

First point to note was that it was VERY busy, and therefore VERY loud. Sometimes this bothers Flossie, sometimes it doesn’t. Today she was mostly OK and I think that was mostly due to the fact that she was kept occupied for so much of the day. Ear defenders are available and it did get quieter as the afternoon wore on. We were able to access everything, it really was one of the most inclusive venues that we’ve ever been to. Thank you Eureka, we will be back!

If you’ve read this blog, then please sign and share this petition, calling for Changing Places toilets to be made available in larger public buildings, thank you.

 

A Day in Scarborough

The weather forecast was promising, enough for me to get the bags ready the evening before. Blue skies and sunshine in the middle of October, the seaside beckoned. We decided to head North. Scarborough was calling…

Kids fed and dressed. Off in the car. 90 minutes later we landed. As we headed down the seafront in search of a car parking space we were greeted with smoke billowing from a nearby chip shop. Knowing that the road might get closed off anytime we hastily parked up. Unloaded, and made our way onto the beach where there were already a number of people gathered watching the ensuing spectacle. Ben though, was pretty much more interested in building sandcastles, Flossie, more interested in eating the sand, and so we had to sit her back into her wheelchair pretty sharpish. Attention was drawn again to the fire, as the fire engines arrived, and as a fireman was lifted up on a platform to start to douse the flames. Slowly, but surely the fire was brought under control…

We left the beach, found a comfy seat, got fish and chips from a shop a bit further down, and ate while we fed Flossie. Tummies filled, we took a ride out on a pirate ship (not wheelchair accessible, we carried Flossie on). Only about 15 minutes, but Flossie loved the wind in her hair and we got lovely views of the castle on the nearby hill.

A further walk, and then another opportunity to see Scarborough from another point of view as we carried Flossie onto the Ferris wheel at the small fairground. Even Col faced up to his fear of heights with this one, although he did have white knuckles from gripping the bars on the ride. Again though the kids loved it, and it was truly one of those days when the sun bounced off the waves in the sea, and was reminiscent of a day in summer rather than the middle of Autumn.

Quick time check, and the realisation that we would have to be quick if we wanted to take a trip up the cliff on the funicular railway (and lets be honest, it’s not a trip to Scarborough until you’ve done this particular journey…!). We caught the tram at the Central Tramway which was established in 1881 and is surprisingly accessible. The carriage we were in was very full, but we got Flossie in there, in her wheelchair, and we actually followed a lady on a mobility scooter into the carriage. The journey itself only takes about a minute, but certainly beats puhing a wheelchair up a hill! We had a quick look around at the top and then made a repeat journey down. Back to the car and a small journey to Peasholm Park.

Now Peasholm Park took a bit of finding, it wasn’t particularly well signposted, we kind of aimed for what we thought was the right direction and hoped for the best… We did find it though, and again parked up for another 3 hour stint.

Peasholm Park is modelled on the Willow Pattern plates, all pagodas and little bridges. First stop was a cup of tea, as we were parched. Then the usual problem, Flossie needed toileting. I knew there was a Changing Places toilet (with loo, adult changing bench and hoist) somewhere in the vicinity of the park but when I looked at the Changing Places toilet map I inwardly groaned, it was further than I thought and looked to be in the midst of a warren of streets and I had no clue as to where I was in relation to it. Flossie needed sorting. My Radar key wouldn’t work in the disabled toilet, so I have no idea if that solution would have been better than the one I was forced to use. I had to use the baby change facility in the ladies toilets. It was in full view of anyone entering the ladies toilets. I was mortified.

I had to change Flossie here, in full view of anyone entering the public toilets…

We got sorted, in what was perhaps the quickest nappy change on the planet but still at least 3 people saw our situation. This whole crisis could have been averted if Changing Places toilets were provided in the public places where tourists such as ourselves visit.

We went back out into the fresh air, and carried on with our day. The rest of the day went fabulously well. We took a turn around the island in the lake in swan shaped motorised boat (We lifted Flossie, in her wheelchair onboard). We saw a heron and squirrels, and then heard a train blow it’s horn in the distance, so of course that had to be checked out and we had a lovely little journey on the minature railway, which had 2 wheelchair accessible carriages that you literally just wheeled the chair into. The ride took only about 20 minutes each way, but we never turn down a trainride!

Access on and off the train at North Bay Railway was so easy.

We found a little cafe and stopped there for tea, and fed Flossie too. We used the loos there, and found that there was a much more private babychange facility there so wished we’d known about that earlier. Col and Ben had a quick go on the waterchute and then it was time to head back to the car. We want to return as it looks like there is so much more to explore at Peasholm. I will be emailing the council about the need for Changing Place toilet facilities at the park though….

If you agree that Changing Place toilet facilities should be included in our public places then please take the time to sign and share this petition, thank you.

 

 

 

 

 

Exploring Art and Fountains – A Day in Hull

One of those days where we really only had made vague plans, the weather forecast kept changing – heavy showers, no rain, light showers. So with some trepidation we opened the curtains this morning, and decided to go for it. Bags packed, medicines drawn up (as we were planning a full day out), kids dressed, fed and out we went…

Through the countryside, stopping at the signals for a train to go past (we have a game where we have to guess the number of carriages, today I won…!). Drove along by the River Humber as the geese flew overhead, over the Humber Bridge and into Hull.

Our first stop was the Ferens Art Gallery, it’s a while since we had last been and last time we had been thwarted from reaching the upstairs gallery as Ben had declared it was time to go outside. This time we were pretty much thwarted from seeing anything in the downstairs gallery as Ben’s main ambition was to go to the fountains in Victoria Square, however we persisted and saw some fabulous stuff. There were interactive tablet screens that the kids could draw on (and I’m delighted to say that Flossie in her wheelchair could reach them and participate too). We looked at the work by the Turner Prize nominees, I was especially impressed by the slavery teasets done by Lubaina Himid (particularly potent as the slavery abolitionist William Wilberforce was from Hull). There was no way that Ben was going to sit through a 20 minute film by one of the entrants though, and it was Flossies dinnertime so through to the cafe we went. Food ordered, staff were very friendly, Flossie fed.

And then the only downside of our visit, sorting Flossies toileting needs. No Changing Place toilet facility (with adult changing bench and hoist) here, I had checked and knew there was a facility open at the Guildhall, but had no idea where that was in relation to the art gallery. I therefore did as I usually do in these circumstances and decided to go and try to change Flossie on the baby change. I struggled more than usual, the baby change was not located in the disabled toilet, it was in a small accessible cubicle in the now unisex toilets. I therefore had to lift Flossie out of her wheelchair and carry her into the cubicle in order to change her nappy, leaving her wheelchair outside. It was a tight squeeze to get both of us in there, but we did manage.

Back to the rest of the family and more explorations in the children’s gallery, well I was very impressed. An interactive sensory floor, loads of mirrors, books to read (including a childs book in braille), a dressing up box and a light table. Loads of things that kept both our kids occupied and let Flossie have a good roll around and time out from her wheelchair.

We then ventured upstairs and found a part of the exhibition which drew most comments from Ben, there was a short film and a couple of pictures by the artist Spencer Tunick… “Mummy, why have those blue people got no clothes on, wont they be cold…?!” “Mmmm Probably!”, “Mummy, they’ve all got blue bottoms!”

We’d had a good visit, but now it was time to go and get some fresh air, so we headed out into Victoria Square and danced among the fountains. The weather still not hugely warm, but perhaps our last chance before the colder weather does arrive…

We did later use the Changing Places toilet facility at the Guildhall, it’s 5-10 minutes walk away from Ferens Art Gallery, very pleasant building, huge facility. More details on the Changing Places toilet map here. Hull is trying to address the need for Changing Places toilets with facilities opening soon at Hull New Theatre, Trinity Market and The Venue. I have emailed Ferens Art Gallery to see if there is anything that they can do to improve the loo situation there, as it was a really tight squeeze for us, and if it was a parent with a disability trying to change their child it may well be impossible. Obviously my preferred solution would be an adult changing bench and hoist in the pre-existing disabled loo…

If you feel, like I do, that Changing Places toilets should be included in all large public buildings, as they are built or renovated, then please take the time to sign and share this petition, thank you.

 

3 Cheers For Boiled Eggs!

Now this is going to sound a little sad, but I’m celebrating today because boiled eggs are on the menu, all cooked and ready, for when my little minions are home from school…

Now while they are not quite haute cuisine, what boiled eggs means to me is that tonight I shall not be cooking 3 separate meals. I’m sure my pre-mum days would have judged my current mummy days, as some nights it is just too difficult to have us all eating the same thing.

Flossie had several admissions into hospital this year because of issues with reflux. In order to try and avoid a major operation we have cut out various allergens from her diet. She no longer has dairy, soya, any nut based milks or celariac. Added to this she needs a soft diet, which is neither too tough to chew nor puree (because we do want to challenge her into chewing something). So often stews, casseroles and pastas are on the menu for Flossie. We do a lot of batch cooking and freezing in this house…

Ben, on the other hand, will not eat food if it is touching something else or is mixed up. Stews and casseroles are definitely NOT on his menu. But give him his due, he does love fruit and vegetables, so as long as it’s not touching he is generally fine. Although like most 4 year olds he is willing to change his mind about what he likes to eat as often as the wind changes direction.

And me, well due to Col’s shift patterns we often have a big dinner at midday, so by the time it gets to teatime all I want is a sandwich, so that’s me sorted this teatime too…

3 Cheers for boiled eggs…