The Proud Place

We visited the proud place for the first time this weekend. Usually going to a new place involves hours of me researching the location online, in reviews and on Google street maps. This time was different.  When ai looked at the information for the event we planned on attending it included a section about accessibility as part of the main information sheet. Not hidden in a menu or drop down part of the screen, actually clear for all to see with the date and time for the event. I was able to confidently mention this event to my family knowing for certain that we would be able to access it. No questions asked. 

Such a refreshing approach. 

Despite this, on the day I was nervous. That is based on previous experiences elsewhere though. The old 'yes, we are fully wheelchair accessible, we just have two steps to get in' or ' oh, it shouldn't have listed us as accessible' was on my mind.

We arrived in the rain, parked in a nearby disabled bay and found the whole place easily accessible. The front door was a bit tricky with It being automatic but also on a buzzer intercom system but once we were through that it was all open plan, easy to get around and people were very accommodating. 

When there was a breakaway meeting I chose to attend in a smaller space I panicked about not fitting in the room. A volunteer simply moved chairs and steps out of the way to make space for my chair. I didn't even have to ask.

When they came around taking food orders (which we didn't even know happened) they had a gluten free vegan option available. We told them our extra needs with food and all were no problem, easily accommodated. We were actually able to eat food that other people were eating, at the same time and in the same place. That really blew my mind. I thanked the kitchen volunteers and told them how rare that was and their answer was simply that they try to be as inclusive as possible with food. 

If you have a transgender person in your life I whole heartedly recommend the proud place to you and to them. Look them up.

(No photos due to people's personal choice and because unfortunately transpobes choose to exist)

 

Graveyard Squirrels

On the advice of my carer, my husband and I went to our local grave yard to walk my little dog Bella this weekend. There were so many old graves, obviously from rich families of the past. Some graves were sinking near trees, cracked, lifted up off the floor and falling over. There were small graves the size of a shoe box, huge graves so tall I wondered how they were still standing and everything inbetween. Some were for multiple people in families, children, babies and adults too. Some had verses, pictures, crosses and windows on. Some stood straight up and others lay flat with railings or raised stone details marking their borders. One was decorated for Halloween.

My carer says the squirrels nest under the lifted gravestones.

We parked up and got out of the car. Before we had even put the ramp away there were atleast 7 squirrels gathering from near and far across the way from us. People obviously feed them, not just us. They were all over the graves, trees and grass, leaping like newborn lambs towards our car. Everytime we stopped along our walk the same thing happened. At one point two squirrels had a quarrel that alerted my poorly sighted dog to their presence. 

Later on in our walk amongst the gravestones from long ago and more recent, my husband stopped and patiently waited for a squirrel to feel confident enough to eat out of his hands.

I videoed the squirrels for my children to see, a nice thought that even in death you aren't alone. Even if you feel your loved one is abandoned in a far away cemetery there will be company for them. 

We have already been back there once and plan to make it a regular area to walk Bella and maybe ponder life ourselves.

Coronavirus diary

As a diary goes, this is more of a summary of our daily life since the coronavirus lockdown in the UK which began on March 23rd 2020.

We have three children who all have autism of one form or another. Two of them have pathological demand avoidance, a particularly tricky form of autism which means any demands made or inferred cause them anxiety and distress. This often results in avoidance behaviour and is exhausting on the best days. During the lockdown we have removed all possible demands because the space we would require for calming from a meltdown simply isn't there.

One of our children has asthma which the NHS haven't classed as severe because she hasn't been hospitalised for several years, but any hayfever or cold means she has weeks of coughing and using her nebuliser before any signs of recovery are seen. She misses out on a lot due to this. So we are keeping her self isolating for her own safety. She understands and is OK with it, although she is missing her best friend terribly.

Our eldest and youngest children, who both have PDA, are struggling with the changes in routine. Day/night are blurring into one....to the point I strongly challenged them both to sleep out in a tent last night with the aim of the circadian rythym resetting a little. Our eldest refused, saying he could just open his windows and didn't need to sleep in a tent- totally missed the point of the exercise but the demand was too much so we left him to it and focussed on our youngest. She loves a challenge and usually responds well to them if worded correctly.

It turned out she fell straight to sleep and slept well all night in there, but my husband barely got any sleep and slept all morning instead, after abandoning the tent at 6am and returning to his bed.


Day to day we have been trying to have meals together and free time, with suggested time fillers and avtivities in between. With the weather being so warm and dry, they are all enjoying hours and hours of trampolining outside each day. They are also taking time out when they need it, watching youtube videos and listening to music on ipads and alexa devices.

Every day has been essentially the same, with different activities suggested, or with me starting different activities that the children then join in with.

Getting shopping in has been difficult and stressful as, not only do we have the autism related diet preferences and packaging needs, but also a lot of allergies and intolerances to different ingredients in food. Because of this we cannot use any of the general boxes from the supermarkets, but need to try and get delivery slots, failing that a clock and collect slot. They seem to go quicker than they appear online. I have stayed up past midnight to get a slot before and then not been able to get back in to edit my order until right before delivery, by which time most of what I ordered was out of stock.

The plus side is that we have been taking out dog out for a local walk most days. Our eldest babysits the youngest (we are fully contactable, local and know they are safe) ehilst we spend around an hour following the local accessible footpaths and walkways, finding new nature filled areas.

We have made varying types of slime, cooked meals together, had the usual conversations that go off tangent following the children's questions and discovered boredom busting websites. Netflix, amazon prime and sky have been used to excess for evening entertainment and tiktok has been updated far too many times by my two eldest too.

We are in week 5 now apparently- i have lost count- and I cannot see how we will leave the lockdown without a second wave of the virus spreading, but we need to trust and listen to the powers that be and hope for the best.

Stay safe x

Wheelchair travel abroad

My first time flying as a wheelchair user has gone pretty smoothly up until this point (so far so good).

I am sat in my seat on the plane to Turkey, ears popping continuously for the time being, one child either side of me and my husband is sat with Miss G across the aisle.

We have around a 4 hour flight and then a private transfer arranged to get us from the airport to our hotel.

Travelling through the airport with three children with autism has worried me hugely, let alone the added issues of needing a wheelchair. Recently there seems to have been a lot of publicity around lanyards with flowers on that are supposed to be a magic key almost for people who need extra assistance at an airport. Despite this I know we will all have to queue at some point, all have to go through security and all have to get on a plane when told to and sit where we are told to. And stay on the plane.

We arranged for special assistance when we made our holiday booking, printed out the airports guide for children with autism and watched their video guide online too. We answered questions, allayed fears, and made things as easy for them as we could by suggesting simple clothing and shoes, getting them a new carry on backpack each and leaving plenty of time for their bags to be checked through at home.

When we got to the airport we left our car at valet parking and made our way into the terminal building to find the special assistance desk. A man from there (not wearing the yellow jacket it mentions in the guide) took us to check in, where a lovely, friendly lady weighed our cases, put labels on our suitcases and on my wheelchair, and wished us a good holiday. We then returned to special assistance where two ladies (one in a yellow jacket but one in an orange one) took us through fast track security, bypassed the duty free smelly and bright shopping and showed us where to be when the gate opened forty minutes before our flight time.

The paperwork for the children, and the video guide covered the security procedure clearly for the children. Other than a few nerves about walking through the security arch, it all went smoothly. I had to wait and be patted down by a female worker, but I had expected that. She swabbed my hands and some other people had to remove their shoes. The workers there were all very friendly and helpful and made it as stress free as possible.

Once through into the departure lounge, the search for allergy friendly food and drinks began. We managed to locate fruit and vegetable pots, crisps and drinks in one shop then salads and a coconut yoghurt in a second. Not too bad for us. Miss A even had some soup (which we then carried around for the rest fo the time in said area until we had to get on the plane).

We ate our food, picked up some magazines and found the sensory play area for the children where they could also watch the planes out on the tarmac.

I had booked for Miss A to have a mini manicure at the departure lounge, something for her to look forward to. She set her heart on a light blue colour and they thankfully had just the right shade there. Phew. She did incredibly well sitting still for her manicure whilst the lady chatted to her about her flight and holiday. She has wanted a manicure for a long time but I have been unable to find anywhere that will see a child.

It was then time for us to be taken to the plane. Two special assistance staff appeared and took us through the queues to the plane. I was amazed at how many people there were who didn't move when asked to by the worker. I was glad I had the second worker pushing me so no blame for any bumps or bruises lay with my family.

It turned out there was another lady with a wheelchair on our flight too. We were all taken out to the plane and waited for the baggage truck to move for the ambulift to be able to load us on. The rest of my family climbed the usual stairs to board, whilst we waited. It all went very smoothly with no hassle. I was asked if I could walk to my seat once on board, and embarrassingly said no. It was alright though. They had an aisle wheelchair which I transferred onto and was wheeled to my seat in, with everyone along the way gawping. I didn't care though. I had made it onto the plane to my waiting family.

The flight itself was as smooth as the departure had been. We had already agreed we were going to eat our snacks and buy drinks on the plane, but then someone said they had a nut allergy half way through the food service (seemed odd to me) so we were all asked not to eat anything with nuts in whilst on board. Do I be that one who caused someone to have a reaction? Of course not. With all our allergies and intolerances I know what a nightmare it can be. But also I know if they had a nut allergy I would have told cabin crew when boarding the flight, not when the food trolley had already served half the aircraft. Still, that was that.

The 'are we nearly there yet?' got really really tired after an hour of the flight. I tried encouraging Miss A to watch one of her downloaded films or programmes, listen to music, colour her magic colouring book, sleep, draw, read her new magazine..... Nope. Nothing I suggested was an option until she decided it for herself (PDA to a tee). It felt like a very long flight.

My seat was meant to be by the window so others in my row would be able to get out to use the toilet. Mr J wouldn't move when I boarded though so I was sat in the middle of the three seats. This meant he had to literally camber over me to get to and from the toilet. Great. Plus he took great joy in leaning forward, thereby blocking the entire window with his head. This constantly annoyed Miss A.

When we got to the airport in Turkey, I was last to leave the plane as I waited in my seat for the staff to come and help me get down the aisle in an aisle chair. Two men appeared to do this for me, taking me directly to my waiting wheelchair. Then through the passport checks (where the maze of ribbon barrier and posts were moved away for me) and out to our private transfer.

The driver drove so carefully and slowly, dodging every pot hole, bump and crawling over speed bumps to avoid any pains. I was glad of this but also wanted to get to the hotel.

As a side note, we were on a three lane road, the equivalent of an A road in the UK, and there were children rollerblading down the hard shoulder incredibly fast, heading directly for a pulled over lorry. Then a car passed us with a lady sat in the front passenger seat holding a toddler on her lap. They think nothing of a family of 5 getting in an average taxi. The safety standards on the roads here are very very lax compared to at home.

Since arriving here in Turkey, nothing has been too much trouble for anyone local. I have noticed that people talk to me rather than to the person pushing me here. They have a lot of respect for my husband, having seen him getting me drinks and plates of food, and I have to only look at something for someone to appear from nowhere to get it for me.

I have been lifted in my chair to get up steps, slowed down on downward slopes to the beach and had people make me drinks without me asking the chefs have pushed me through the dining hall for me to select food and waiters have moved chairs, fetched food and drinks, all without me asking. In fact, often with me saying I am OK.

We ventured into a local bazaar yesterday. I had researched it before getting here. I knew where and when it was, how long it would take to walk or drive and what the streets were like. So I was fully expecting the narrow cobbled streets, the hundreds of local stalls selling their home made wears from food to shawls, lemonade to jewellery. Whilst I am saddened by my food sensitivities, I think in this case it is a benefit to me because I loved baclava. The crunchiness combined with the sweet honey... Yummy. But now I have to stick to dipping fruit in honey instead. I don't know how my husband has resisted the baclava here.

Our taxi to the bazaar arrived and the driver put two seats down at the back for the wheelchair, waited patiently for us to all get in, then loaded the wheelchair for us. The same happened when we arrived five minutes later, and on our return journey too. Here it feels as though they just see a wheelchair as an extension of the person who they will help however they can. They don't seem to view it as a problem or an added difficulty that needs fixing.

The bazaar is a local market for local people on the whole. It isn't the typical tourist market where men try to sell you jewellery and leather whilst plying you with apple tea. We found mainly women on the stalls, selling home made goods. We found lots of hand made jewellery stalls and a lady who crocheted clothes and toys. This was the ideal opportunity to pick up gifts for those back at home.

A quick wander around the town after the bazaar saw us at a marina and buying candyfloss for the children before catching a taxi back to the hotel, laden with gifts and goodies.

Our best find was the cafe where the owner spoke pretty good English. He really made the effort to make us all feel welcome, especially the children. He even explained ayran to me when I asked, chatted about where we are from and moved furniture around for the wheelchair to get in without us even asking or trying.

It was so hot down in the bazaar that the cool outdoor pools of the hotel were calling our names as we sat down for a quick light lunch before answering their calls with a splash and a sunbathe.

I have mastered the art of getting into the pool from my wheelchair and back again now. It isn't my usual wheelchair though and I have removed the footplates to make it easier to turn around and manouvure in general, but I can do it. I have hurt my back, shoulders and left arm doing this all week but there is no way I was just going to sit there and not get into the pool.

It is our last evening here now, we are being picked up tea time tomorrow for our journey home again, and I feel sad. Sad because of the weather changes and how beautiful it is here, but mostly because I know I am going back to living in one room again and being spoken over instead of spoken to.

Accessible cycling

I never thought I would be able to ride a bike again when things started to get really bad with my health. After all, I can't stand up or walk, so how could I possibly expect to so something as complex as cycling. Except that today I did. I went cycling with my whole family.

We used a local charity who hire bikes out to people to encourage equality. They have a variety of different types of cycle available by the hour by a beautiful, level lake and carers are free. I went and had a chat with them a few weeks ago to ensure they would have something I could use and finally had a good enough day today to go ahead and brave cycling. In public. I was well prepared with a hoodie on to be able to cover my neck if needed, hand supports, an arm sleeve, incontinence knickers (how sexy) and both ankle supports on.

My youngest and eldest, A and J, can both ride a bike. J had a new bike today from a local company who refurbished bikes, but A wasn't feeling like riding hers with stabilisers today so was driven around in a bike trailer.

G cannot ride a bike and will not ride a bike. She has previously ridden tricycles for children with additional needs and does pretty well on a pedal go kart, but as soon as she saw the tricycle today she instantly reacted badly. I spotted it early enough to stop her running away completely. No amount of coaxing or calm persuasion was helping so we decided the fewer adults around the better. I had reserved a two seater side by side bicycle with seat backs and asked for my feet to be strapped down. This was the bike with the trailer attached for A. Then J had his new bike to ride and G was booked onto a special tricycle. It ended up that we had two of the two seater bikes, one as planned but for me, J and A, then my husband and G  caught us up on a second one.

G had a seat belt on to feel more secure and, like me was on the left side so was not in control of steering or braking. I pedalled most of the way around because I found it made my tremor less obvious and also is better exercise than just sitting there. I had my side in first gear so my muscles didn't cramp up or fatigue too quickly. J was doing most of, if not all of the work, and made a big deal of that too. After a lap of the lake we swapped over a bit... My husband and J swapped places so I coukd ride a bike with my husband. G was reasonably happy with that as long as we were in front setting the pace. I managed three laps in total before the pain in my back and neck was too much. Myself and A were taken to the cafe whilst G and my husband continued on their two seater and J rode his new bike around the lake. We saw moorhen chicks, a Swan sat on her nest, ducks, Canada geese and white geese as well as a lot of dog walkers and families out enjoying the sun.

It turned out we had planned things perfectly as within ten minutes of us all being in the cage together the heavens opened and it didn't only rain, it hailed. My husband had to go and rescue J and A from the play park and we retreated to the car park to feed the geese and ducks from the car. This always works well because those who want to get out can do, I can stay warm and dry whilst getting some lovely photos and others can choose what they wish to do. Plus the birds get fed very well. Now we are on our way home with A asleep in the back of the car, J's bike hanging on the bike rach at the back of the car (I keep checking in the visor mirror to see if it is still there!), G looking very unimpressed because she didn't bring anything to do in the car and me trying to stay awake (hence I am writing this now). We will be back to cycle again soon. If you think you can't cycle again I woukd encourage you to look in your local area because there were so many different types of bike available. Bikes you wheel a wheelchair onto for others to cycle you along. Bikes for two people like we had with the seat backs Bikes for two people side by side with a large bucket type seat on the front The bike trailer we used A range of different sized bikes and tyicycles A hand bike with a wheelchair attached Really something for most people I think. I literally just had to hold on to the handlebars today, anything more was by choice.