We want to visit you, can you help us?

Are you one of the tourist attractions, shops or businesses that I have been in touch with regarding providing a Changing Places? Did you reply to me? Or did you ignore me, in the hope I would just disappear?

The fact that I am getting in touch means we want to visit you, we want to come and spend a day as a family at your venue. We want to come and spend money in your cafe, gift shops and ice cream stalls. We want to come and make memories with my family.

When I say family, it is not just my husband and the two boys who will visit if you have a Changing Places, but their older siblings, their significant others and Nanny, Granddad and Uncle Woo Woo who all come out with us. I have worked out that at the one Norfolk attraction who refuses to answer me, that would be £167 just for us to enter there without the added extras mentioned above and this is just our family.

The ‘Purple Pound’ is worth £249 billion. A large percentage of this sits in banks, making them richer, because people don’t have the opportunity to get out to spend it and just stay at home. So those of you who think it is not worth doing, you are wrong.

I am getting in touch with you for my sons and my health and dignity. Without a Changing Places I have to change my son on a disabled toilet floor which means having to lay him on the floor as he is unsteady on his feet and then me either bending over to change him or me getting on the floor to do so, both aggravating an already damaged back OR laying him in the boot of our car in a middle of a car park, whilst trying to preserve some sense of dignity while the general public are walking past and again aggravating my already bad back.

And lastly, I don’t bite, I have been in touch with quite a few businesses in Norfolk. The majority have replied and I have made some good friends who see the importance of looking after all customers. Some don’t have a full Changing Places yet but they are doing things to work towards that by providing a height adjustable changing bench, or a bench and ceiling hoist, not perfect but on their way to including everyone on their day out with them.

I just want to help you to help us.

If you wish to get in touch you can find me on Facebook ‘Changing Places and Space to Change Norfolk’ or ‘Me, My Boys and Loos’. Or search for the ‘Norfolk Loo Lady’ on Twitter or Instagram.

The Importance of Parent and Child Spaces

Have you ever parked in a Parent & Child Bay? Did you wonder if you were inconveniencing anyone by doing so?

Parent and Child Sign.

My two autistic sons have no spatial awareness or danger awareness,  Currently they are not entitled to a blue badge because they can walk over a certain distance even though this is in pain for my oldest son.  It also means, that if we don’t have a parent and child space in a supermarket or retail park, it is quite likely we will drive back out again.

Now I am not a lazy person, I wouldn’t even care that the parent and child spaces were further from the store to deter people who don’t need to use them.

I deliberately bought a car with sliding doors at the back so when the children get out they wouldn’t hit other cars. This would have been great thinking if I didn’t have two children who insist on coming out ‘Mummas side’ when we park, another autism trait in regards to routine. You see, I don’t want my sons to damage peoples cars. Between buying my car and parking in parent and child spaces, I am really trying not to let that happen.

Let’s not forget my sons’ lack of danger awareness.  Having that extra space gives me the opportunity to put them in their pushchairs or trolley without having them sit in the road.

So until the companies over here decide to make their parking spaces bigger, or the Blue badge rule comes in so I can park in disabled bays, I will continue using Parent and Child Spaces.

Please have a little consideration

 

The Accessible Gem of the Norfolk Coast

Sorry I haven’t written for a while, between the children’s appointments, our annual holiday and the C word it has been crazy in the Spagnola house.

I have always been proud of Cromer, I have been lucky to have it in my life for as long as I can remember even though I was born and brought up in the Runtons, Cromer has always had a special place in my heart. My earliest memories of going in the International stores (Shoezone) and going upstairs to the Rusts Cafeteria (above Boots) with my Great Grandma and lime milkshake in the Tudor restaurant with my parents after shopping in town, very happy times, the town has moved on, but I love Cromer no less.

Another thing I am proud about Cromer is the people, after a visit to the supermarket or a stroll through town in the summer I often return home to my husband or children saying, “Do you know everyone?” I love how when things get tough the town pulls together, I love the people who bring the community to life, for instance, all the volunteers who spend their time making this town great through the events they organise and run.

Cromer rocks!

Recently something has made me even prouder, when I started on my accessible loo work, I was the only one, I started writing emails to all the large businesses in Norfolk, I got in touch with many campaigners from all over the country. And then the North Lodge Car Park plan was brought to the surface, I was happy that NNDC added a Changing Places to the plan, and even when it was eventually shelved I had people and even the local town council saying that, even though they were against the car park they had wholeheartedly backed the Changing Places.

We have some awesome cafes in town that have backed The Honeypot which has an accessible toilet with hoist and bench, even though they can fit a wheelchair in, having the Space to Change within a 5 minutes walk means that people are able to stay in town longer and use them. I have already mentioned Henry’s Coffee Shop, but The Old Rock Shop Bistro, Cafe Main and Coffee Therapy and Blue Sky Cafe need a special mention,

In the next couple of weeks  I have meetings as to how we can get Cromer more accessible and inclusive

This is an exciting time I am looking forward to see what 2019 brings.

The Honey Pot Cafe

In 2017 whilst manning the Mobiloo  at Cromer carnival I met a lovely lady called Pauline, she came to see me as she had heard we were there and wanted to come and check Mobiloo out, Pauline is the Mum of the ‘boss’ of Allcare Community Support which is a company in Cromer that have respite & residential services and helps by giving their members life skills promoting independence, it really is an awesome set up. It is fair to say that Pauline was impressed by the Mobiloo and said “we need this permanently in Cromer”.

Little did I know what was to become of our conversation.

October 2017 I was contacted by Pauline again saying they had found a premises they were interested in putting a fully accessible toilet in could I come and have a look. She didn’t have to ask me twice. When I first arrived at what used to be a ladies clothes shop in Cromer it was difficult to see how this would work but with a bit of imagination it started to look like it could be done next stop, get in touch with the company I knew that could help.

Closomat had always been helpful with my campaigning so seemed the obvious choice to get in touch with to have a look at what was needed, they sent the awesome Kelvin to have a look. To say sorting this toilet caused a few problems, with builders and installers, would be an understatement. I thank all involved with this for their patience.

After

The Space to Change is an accessible toilet providing a ceiling hoist, a full size, height adjustable changing bench, a sink and the piece de resistance the Closomat Palma Vita toilet, that has a wash and dry function so those who cannot wipe are able to clean themselves independently.

Roll onto the 30th June it was finally the day for The Honeypot and the awesome Space to Change to be opened, I know how hard all the staff and users at ACS had been working to get to this point it was great to finally see the finished article, to say I did’t shed some tears would be a lie, it was a happy vibrant time and I was honoured to be able to cut the ribbon.

Finally we had a permanent accessible toilet in Cromer.

The thing many people don’t understand is that the cafe is there only to pay for and keep up the maintenance of the Space to Change, it is in no way competition for any other cafes in the town it serves lovely homemade snacks, cakes and hot drinks but due to space available it isn’t in the market to compete with some of the more well established cafes in Cromer, although it is well supported by local businesses and Henry’s Coffee and Tea Store is one of it’s friends and they understand the need for The Honeypot and especially the Space to Change. Owner of Henry’s, Philip Search, is well aware that even though his coffee shop is large enough to accommodate wheelchairs it just isn’t big enough to facilitate a Space to Change, what can happen though, is that locals and visitors alike now have the option of having a coffee and homemade cakes and if they need the loo, the Space to Change is just up the road making the town more accessible and bringing in a good chunk of the purple pound. You don’t even have to use the cafe if you need to use this toilet. Another misconception is that it is only for disabled folk, it is open for everyone to use, go and have a look and check it out.

I have yet to mention the thing that has my boys excited to visit and that is The Honeypot’s Lego station, it is lovely to sit and have a quiet coffee whilst the children are entertained, the boys love to build and line up, not just the Lego but the children’s chairs that are provided, oh the joy of autism! It makes having a coffee out a pleasure, I joke that I could leave them and they wouldn’t notice.

On the 14th November I received this blog from someone who had been able to spend a day in our wonderful town because of The Honeypot.

http://www.facebook.com/theinclusivehome/posts/2241581939420130

Please pop in check out this gem in the ‘Gem of the Norfolk Coast’.

A visit from our local MP Norman Lamb and County Councillor Tim Adams.

 

The Mobiloo Invasion of Norfolk

via The Mobiloo Invasion of Norfolk

The Mobiloo Invasion of Norfolk

In late 2016 a member of our local carnival committee got in touch to ask if there was a mobile version of a Changing Places that could be used at Cromer Carnival, I got in touch with a friend of mine who told me about Mobiloo, and here is where my association with Mobiloo began.

Mobiloo is a Changing Places on wheels. It has a height adjustable, adult sized changing table, a ceiling hoist, toilet and sink and a tail gate lift to get people into the vehicle.

After much arranging between myself and the Cromer Town Council we decided to have the Mobiloo up the top of Runton Rd car park, just opposite the toilet block. This was so that anyone visiting Cromer that week could use it. It was to be open from 9am-9pm everyday. I was lucky to have some awesome helpers that week allowing me to have meal and more importantly my own toilet breaks, I cannot thank them enough.

We were very lucky to have some awesome sponsors to help with the Mobiloo being at Cromer Carnival 2017. These were Henrys Coffee Shop, The Rock Shop Bistro, Bann Thai, The Copy Shop, Morrisons, Masala Twist, Cromer and Sheringham Rotary Club, About With Friends and Cromer Academy, great to have so many businesses caring about access and inclusion in Cromer, it makes me so proud.

Picture above from Cromer Carnival 2018.

That week I met some amazing people, people who could see the benefit of having Mobiloo at the carnival, foster carers, social workers, teachers of SEN (Special Educational Needs), even a gentleman whose wife had to take their son home halfway through the week due to not having these kind of toilets available and of course all the users and their carers. I decided to have a ‘guestbook and below are just some of the comments we received:

‘Used Mobiloo today, brill, should be more of them, so needed’

Followed by

‘What an amazing toilet ‘At Last’. ****** who is 22 years old and this toilet gave her dignity in going to the toilet, I have been a carer for 15 years and this is just amazing. Well done to all who were involved to provide this much needed facility’

There was so many more comments along these lines but this last one is quite special and I shall tell you why afterwards,

‘Great facility for such a lovely week here in Cromer. However, every town should have a permanent ‘Changing room’, I also think, in my opinion, it should be provided by the council, NNDC take note. Thank you Emma and I will help get a permanent changing room anyway I can’

I had a conversation with the Mum of the lady who runs a local support group for adults with various learning disabilities and this was her comment. this was where The Honeypot in Cromer started from. The Honeypot is a cafe that has a smaller version of a Changing Places on site, it provides a changing table, hoist and a snazzy wash and dry toilet. It means that Cromer is now a lot more accessible to the people who need these facilities, it fact it was recently mentioned in another blog of someone who was able to bring her family here for the first time (More about The Honeypot in another blog to come soon).

Norman Lamb MP, Norfolk County Councillor Tim Adams and I with Mobiloo at Cromer Carnival 2018.

I digress, well as you can tell having the Mobiloo at the 2017 carnival was a huge success so much so it has visited Cromer another 4 times since including the Cromer Carnival 2018 and will be here in the 1st December 2018 for the Christmas light switch on and again on the 1st January for the New Years firework display, and all funded by Cromer Town Council who should be commended for jumping on board with the Mobiloo.

Another exciting step with the Mobiloo in 2018 was that after conversations between myself and the National Trust Equality officer we had the Mobiloo on the first Tuesday of each month from May to September at Blickling Hall meaning that we spent hours somewhere we had never been to before as a family knowing it was available should we need it, and also that I spent more money that I probably should have ;).  As this was another success there has been confirmation from the NT Equality Officer that Mobiloo will be back again 2019 and not only that Mobiloo will be attending NT Felbrigg Hall for four dates.  And, Mobiloo attended the popular Repton Revealed at NT Sheringham Park.

Mobiloo will be attending the Thursford Christmas Spectacular for two dates and  attended the Spring Fling at the Norfolk Showground and the Royal Norfolk Show in 2018 and have been confirmed again for 2019. for these dates and any others please follow the link below

https://www.mobiloo.org.uk/events/

Next stop Norfolk’s very own Mobiloo *Fingers crossed*.

 

 

 

 

 

 

 

Bastian

Whilst Mason was still quite young and before we realised that he was autistic we decided he needed a sibling, and 2 weeks before we flew out with all the children and my brother to America we found out I was pregnant.

Bastian arrived just over 6 months later, he arrived over 3 weeks early as my waters went before I was due to have a planned C-‘section. He weighed 6lb 12oz.

It was around this time we started getting all the referrals for Mason, as time went on we kept a close eye on Bastian and he was a very different child to Mason, I know that you shouldn’t compare but it was hard not to. He hit all his milestones and seemed to be thriving. It wasn’t until he hit the 18 month marker we started to become concerned, he started jumping and flapping and eye lined play a lot, he liked to walk on tippy toes and his language was evidently delayed.

We were referred to the same paediatrician that Mason had first seen, the one who told us there was nothing wrong with him. I gave him the benefit of the doubt but came out with him telling us there was nothing wrong apart from a speech disorder. as soon as I got home I made an appointment to see the GP asking for a second opinion and the day we were due to see Dr Steele I was ill and couldn’t go, so Mike took him with my parents.

i would like to point out at this moment the only good thing that came out of the meeting with the first paediatrician was that he referred us to Portage. Our Portage worker has become invaluable to the boys and also me as someone to sound out to and  discuss

Around February time we had a visit from the Nursery Nurse at Community Hospital, and she sounded quite what she had seen with Bastian so I started to doubt myself, “Was he just copying his brother”, Was he ok and we were being over sensitive after Mason’s diagnosis?” etc (there was lots of etc).

We had Bastian’s ADOS in July, an ADOS is where a professional watches your child play, interact and eat to see it they are exhibiting autistic behaviours. Now both of the boys caught us out as we thought they did really well and in both cases we were wrong.

Fast forward to October, we were scheduled to see the speech and Language therapist on the 23rd and the Paediatrician for follow up on the 26th. The SALT happened to be the marvellous lady who sorted us out with Mason, she left with me suspecting that she agreed with us and that Bastian was indeed autistic.

On the 26th October I dropped the boys off and headed to Norwich on my own, Mike was at work so I was going to get the news on my own. I Had spent the past 24 hours working myself up to argue Bastian’s case, I had video recordings and pictures, by goodness I would come out of there with a diagnosis for him if it was the last thing I did, in reality I walked in and approx 10 seconds later she said ‘Bastian was put before panel and we have decided he has autistic spectrum disorder”, well that took the wind out of my sails,

So here I am, Mum to two sons with autism and, do you know what? I wouldn’t have it  any other way.

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Toilets, Irony and Me.

My earliest memory of panic attacks was when I was around 7 years old, of course I had no clue what a panic attack was and can never remember those words being used together until I was a lot older.

Everyday was plagued with worrying about my toilet habits.

School was horrific, at Junior school, it was worrying if I could get from home down to the bus stop and then the horrendous bus journey “What if I need the loo?” and the bus journey was around 10 minutes. hardly a voyage. Then once at school….Could I get through the day without having to ask a teacher in front of my peers if I could use the loo….How embarrassing. And don’t even start me on school trips, having to travel somewhere new inevitably had me throwing up the night before accompanied by dreadful diarrhoea which, in turn, exacerbated my panic attack which in turn made me feel sicker now I know that my panic attacks caused IBS…talk about chicken and egg.

My junior school years is where I was first bullied when I was at my lowest ebb and felt like I had the world on my shoulders and it continued all the way through the rest of my school life. 

Junior school’s panics continued to high school except they were exacerbated  As a 7 – 11 year old you could ask about going to the loo and it was very embarrassing but it seemed forgivable at that age at 11+ years you should be able to ‘hold’ it in and with my bully in most of my classes I didn’t want to give them any other reason to make my life miserable.

School assemblies were the worst having to sit in a hall with the whole school watching on there was NO WAY I was going to get away with nipping out to the loo without the whole school knowing, I can’t remember what year it was but it was the year we sat at the end of the hall where the entrance/exit was, I made sure I sat on the end so I could leg it if needed and because of this confidence I rarely needed to leave in fact I can’t remember ever having too.  Fifth year was the worst, sitting along the back wall on show as the responsible older children that the younger years looked up to, I can still feel that weight of expectation battling with my panic attacks.

And then we come to exam time, having to sit in a hall for over an hour, maybe 2 and not being able to leave  until the paper completed equalled hell to me. I never confess to being the next Einstein but I know I wasn’t stupid, my problem was that I wasn’t sitting there looking at questions and answering them the best I could, I was sitting watching the clock counting down the minutes that I could get the hell out of there. 

College wasn’t too bad apart from the bus trip there. Buses were the pits, they have no toilets didn’t you know but trains, like my friends were using meant a lot more money.

I missed many lessons at college because of having to get off the bus in Aylsham because I was having a panic attack regarding needing a loo, or getting to college and going to the loo, not getting to class in time and feeling ashamed to tell the tutor why, yes toilets pretty much screwed up my education.

School/college wasn’t the only place my panic attacks would surface I missed many a day trip, concert and family days out because my panic attacks would surface the evening before .

I still have the occasional panic attack but they are few and far between, learning to drive was one of the best things I did, I still have a spare pair of trousers, knickers and a toilet roll with me in case but I am in control and as an adult I very rarely have to explain myself.

I know in this day and age if my panic attacks were recognised I would have probably had additional help all through school and I may have left with better GCSE results, but hindsight is a wonderful thing.

And the irony, my friends laugh that of all the things I could campaign for it had to be toilets! They have screwed my life up for long enough, but, I refuse to allow them to do the same to my boys.

Look out world Emma LooLady Spagnola and Changing Places are coming after you.                                                   

 

 

 

Milestones……..

Mason was an amazing baby, didn’t cry much and days soon rolled into weeks then months, it was at around 3 months we realised Mason wasn’t rolling over and as months went by we realised he wasn’t meeting his milestones. Mason didn’t roll over till he was 6 months old, didn’t sit up till he was 1 year old and didn’t walk till he was 20 months old. We, very naively, put it down to him being the younger child with grown up siblings, but that didn’t explain the rocking and flapping. It was when Mason’s speech didn’t develop that it finally kicked in that there was something ‘wrong’ with Mason.

I called our Health Visitor and she agreed to come and see him and do his 2 year check early,so when Mason was 23 months old the wonderful Jo came to the house and put him through his paces and asked me a multitude of questions, I remember sitting there thinking “maybe he isn’t so bad after all” then Jo showed me the results, at that time there was a graph with black, grey and white boxes, white was reaching milestones, grey a little behind and black significant concern, all Mason’s ticks were black apart from one in grey, obviously I had no idea how bad he  was, I remember being a little relieved because clearly I wasn’t imagining things but obviously very worried as to what was wrong.  Jo immediately referred him to community paediatrics, Speech & Language therapy and the paediatric opthamologist. Jo left telling me that the wait for these services was long, 16 weeks minimum GREAT!

Within 2 weeks we had his opthamology appointment through and the following week we were up Norfolk & Norwich University hospital having his eyes tested, all came back fine, I was truly impressed at how quickly that appointment had come round and was waiting for the next 2 appointments, to say we were lulled into a false sense of security would be accurate.

Ten weeks later (Yeah I know) I got a letter from community paediatrics saying they had just received our referral and we would be in the 16 week waiting list, now to say i was shocked would be an understatement, so I phoned Jo asking when she gave the referral to our GP and she said 2 days after the assessment, so I called the GP and asked what the hell was going on, after a few days and many phone calls it turned out that the referral had been put on the GP’s desk when he was on holiday and then he and others had proceeded to put more stuff on top so he had only found it the week before and sent it in, I demanded they got it sorted out and less than 2 weeks later the GP’s had managed to get Mason an emergency appointment.

We turned up at the Jenny Lind dept at the Norfolk & Norwich University hospital ready to have our appointment with Dr Reading (Holy crap that is a whole different story) and after watching Mason for 10 minutes and listening to all our concerns he declared that he thought there was nothing wrong with Mason and that was that although he did refer us to a nursery nurse to come and visit us at home, the wonderful Sue Farrow, blessing in disguise. We came out feeling flummoxed but happy we still had the speech and language appointment and hoped that it would show something up but how long would that be.

The following week we attended a playgroup for children with additional needs that Jo had told us about and completely by luck the speech and language therapist who we were waiting to see was there, she spent 15 minutes following and observing Mason when she  proclaimed she would be no good for him and promised to pass us onto the speech & language therapist that dealt with autistic children! There it was, for the first time the A word was used.

We visited the SALT that Janette had recommended a the children’s centre, She was amazing and a great help to me and from that appointment we got a new paediatrician and we were well on our way to a possible diagnosis at the first appointment with the paediatrician, Dr Long, she decided that Mason needed to go to panel………..

Mason…..

It was December 2010 when we found out we were pregnant again after an easy pregnancy, aside from being the size of an elephant and the obvious miscarriage worries we came to the giving birth part.

After a 60 hour labour with Georgia followed by an emergency C-section and Jack’s tremendously quick 2 hour birth I was unsure of what was going to happen so we planned for another Vbac (Vaginal birth after a caesarean). It was a good plan until we were told the baby was lying back to back and was a big baby, hmmmm this was going to be interesting.

I went into labour on Saturday the 18th August 2012 and, as with the older 2, i had a latent labour, there is nothing latent about it, still blooming hurts, we had our first visit to hospital on that morning and were sent home as I was only 2 cm dilated the longest Saturday and Sunday ensued and eventually we arrived back at the hospital, due to lack of sleep we, why am I saying we, I was offered, that’s better, a sweep to see if anything would happen well shortly after my Midwife left the room I went into full on labour, bouncing on a birthing ball and breathing on gas and air was not the easiest of feats but I was managing quite nicely until she arrived back and wanted to check on me and get me on that bed, I was 8cm dilated, but the baby was still back to back, I had no labour pains in my stomach but I felt like my back was about to break.

Shortly after I managed to turn over as my back on a solid bed wasn’t helping, at this point I was completely out of control and I was very aware of telling them the backache was “F****** killing me” (First and last time I have ever sworn in labour) and here is when it went crazy. So I was propped over the back of the bed when something kicked off, the baby was in distress and they needed to do something quick.

When I went onto have Bastian I had the same midwife, she recognised me because I was the lady whose babies trace was so bad she had never seen a child born alive let alone not have to go to the NICU with that trace.

I was asked to sit on the bed with my feet on the arm of the chair to have an epidural there wasn’t a chance in hell I was able to do that as I told them so, I was then able to lay on my side to have it done and within a short time I was being whisked to the theatre, Casualty style to have a c-section.

When we arrived I was then relatively comfortable and was shortly after joined by my husband looking like a member of the surgical team, I had to look twice before I realised it was him. Not long after I was opened up and Mason arrived 9lb 2oz, very blue but forcibly telling everyone he was not impressed by his entrance to the world.  I thought that was it, but nooooo I lost 1/2 of my blood supply and couldn’t go anywhere until that was sorted, it was touch and go for a hysterectomy by all accounts. Once I was sewn up I was told Mason had to go to be checked over in the NICU but he was back within 15 minutes. And we were wheeled back to delivery suite, where i found out that I needed 2 blood transfusions still makes me feel giddy and around 36 hours later we were allowed to go home.

I have seen posts and comments on social media asking if your autistic child was a preemie, or born late and could that be the reason their children are autistic and I would be wrong if I haven’t thought about the horrendous way Mason came into this world and if it didn’t play a part. but back then we were oblivious to what was coming……..