Written as a mum, wife and carer. My three children have autism, two with the PDA (pathological demand avoidance) profile, one with the high functioning autism profile, all three also have sensory processing difficulties on top, and my eldest daughter has selective mutism too. Life is full of fun, challenges, professionals and to say we are busy is an understatement.
Sat in the boot area of my motability car, strapped into my wheelchair, which in turn is strapped to the car. My daughter, age 11, has left through the side door and run up the side of a mountain with limestone fossils, surrounded by hills and dales, caverns and narrow roads.
My husband has gone to pay for the car park and then I (being mum and seeing all the dangers) asked him to check on Miss G. As he started heading back towards her she started heading out on a bit of a cliff edge. My insides flipped, hoping she woukd recognise the danger as she edged further, clutching her Teddy. Then she sat down on the grass, waving at us down here in the car park.
My husband decided to head yo after her, just in case. There is a large tree here in the worst possible place for those of us stuck in the car. I lost sight of both of them for quite a time before the reemerged above the tree, around two thirds up the hill.
Then, after refusing to leave the car, Miss A decided it now looked fun and she wanted to join them.
Watching my little seven year old crossing the car park, through the country gate and heading up the rocky hill alone felt all kinds of wrong. But I needn't have worried. She is very physical and in no time she was with my husband and Miss G, posing for photographs which I expect will appear on my screen any moment. I have already had a few of Miss G and the amazing view they have up there.
I, meanwhile, am realising why you Shoukd never leave a dog in the car. I am stuck. I can't open a door or window and there is no one to ask. I don't want to spoil their time up there and have tried banging on the windows to get the only other people near me to help, but they didn't even look up, so have to just wait. (I know it hasn't been done on purpose at all, just no one thought because, well, it hasn't always been our family normal)
It sounds like a song, or fictional in a way. I think we are all so used to disaster movies, apocalyptic programmes and films that living through and with the coronavirus lockdown doesn't feel completely real.
When we leave our house to walk the dog daily it doesn't feel any different to normal. The roads are still reasonably busy with traffic, the park still has lots of people in varying group sizes having a walk, a picnic, playing in the park or having a chat by a bench.
The daily briefings from Downing Street confirming the numbers of deths caused by this coronavirus are awful. The numbers of people losing their lives every single day across the country is terrible. It is annoying though that they keep using skewed data, presented in various graphs to make it look like they (the government) are dealing with the coronavirus well compared to other countries.
One day they use one set of data, then when that doesn't show the picture they want, they change it slightly for a different set of data for the next briefing. Thankfully some of the printed media seems to have cottoned onto this now too and is starting to question it.
Around us, there haven't been many deaths attributed to coronavirus in the community or in hospitals. There was an outbreak in a nursing home in the city, but other than that the numbers are very low. I assume this is why people are so blase about the government guidelines. I do have concerns around the lockdown being lifted and the virus spreading like wildfire in that situation.
Life in lockdown has been OK here. With my disabilities and illnesses, I spend a lot of time at home anyway and am usually here alone whilst the children are out at their activities. It has been lovely to have my husband home more and to be able to walk the dog together. The children have also commented on their lives being more relaxed and having more time to chill and less rushing about.
We are all missing our friends though. That is a really difficult part of all this disruption. For my youngest, some of her friends live on our street, so close yet so far.
With every briefing, we are listening for any changes to the lockdown, along with every other person in the country.
This year was our first visit to Naidex. We got our free tickets as a family to attend the second day in Birmingham NEC, a place where we have always struggled with the car parking, distance to the halls and numbers of people in attendance at the exhibitions and shows held there in the past. We have never been to the autism show for these very reasons.
I was fairly well prepared this time though. I have a blue badge for parking for the first time so I knew we would be able to park in a separate area, closer to the halls than we had ever parked before, but it stated that spaces were first come first served so I was a little anxious about my husband needing to drop us all off and go park the car somewhere else, then find us amongst the stands later on. I needn’t have been concerned as there were clear signposts all the way to the disabled car park and plenty of spaces and an overflow area too. To my delight, the area was right next door to the halls too so we didn’t have any distance to walk at all, plus the parking was free. On a serious note, it did mean we could leave our coats in the car and not have to carry them around all day, leaving space for my youngest, A, to jump onto my lap when it got too overwhelming and busy for her.
At the entrance to the halls there were clear signposts to Naidex so we knew which hall to head to as there were a number of halls with different exhibitions on the day. We deliberately arrived after the opening time so there wouldn’t be a queue or rush of people and I knew there was a Starbucks there, to be used as an incentive for A too.
The people at the hall diverted us to a desk where a machine printed out sticky labels with our names on, for us to wear on a lanyard- instant hit with the children. We grabbed a show guide (essential throughout the day for the map if nothing else) and a goodie bag then headed in. The entrance area was pretty quiet as there was a gap between the stalls at this point- great for us as a first impression. After the initial toilet run we decided to head left and then wander up and down the aisles, seeing what was relevant and useful throughout the day.
On our way in, A- age 6- shocked me with ‘Mummy, noone is going to know me or G are disabled are they? Because you can’t see it’. I was so proud of her being able to articulate this and realise that other people may think differently because at her age, with her difficulties that says a lot. I was equally as proud of her and G when throughout the day they didn’t stare at anyone or even batt and eyelid at the numbers of disabled people with such varied needs. Many children (and adults) I suspect would have reacted very differently.
I was initially surprised by the sheer numbers of wheelchair users in one place. It was such a change for everyone to be on my eye-level rather than above me and looking at my husband. When we went to the stalls and exhibitors they were talking to me, not to my husband over me. I loved the day for that experience as I have really noticed that difference since needing the wheelchair. It is only young children that seem to notice me and they either stare, ask me millions of questions or get hushed and hurried on by their parents.
We were hoping to find aids there for helping me transfer safely in the home between the bed/commode/chair/wheelchair, something to help my husband get me off the floor when I fall, weighted items to help with my tremors, sensory items to help me and my children with anxiety and strengthening and perhaps other items useful for everyday living. We were disappointed to find nothing like that at all, which is perhaps testament to the costs of having an exhibition space at the show.
As a generalisation, there were lots of motability car converters and providers present, all keen to pin you down for a ‘free, no obligation home demonstration’ and lots of companies exhibiting various wheelchairs or all types. In between these were people with ‘new’ ideas for websites, apps, holidays and electric adjustable furniture for the home.
I feel mixed about the marketing of items and aids for people with disabilities. I find that the aids I need day to day are always marketed for elderly people, which instantly makes me feel terrible about myself needing them already. I am not 40 yet and all the leaflets, information and aids I have are for the elderly because of the lack of strength and stamina I have in my body. The aids for tremors are all aimed at those with Parkinson’s, who tend to be older. The commode and incontinence products are all marketed at the elderly so are not very appealing for my age group. As a simple example for you, I had an accident recently where I really could have used incontinence underwear. Even before I needed the wheelchair I was struggling intermittently with this as an ongoing issue so used sanitary towels daily. With the mobility worsening, the time it takes to get to a toilet, especially if I have fallen, has increased. I wear leggings because they are easy for me to pull up and down with one hand whilst I hold myself up. However, my leggings are black and the incontinence products are white. Why can’t they make them in black so they are more discrete? If they looked more like a pair or underwear I could wear them with far more confidence. It has also been fairly difficult for me to find suitable items to help me and I feel these should be made easier for people to find. I am very computer and internet literate and able to search around, shop online and locate items I need over time, but many are not able to do this. A very simple item I did not know existed was commode liners. When I realised I needed a commode I was devastated. I have worked in a nursing home and care home in a previous life and know exactly what is involved with caring for people who need full personal care. I do not want my husband doing this, but the thought of a stranger doing it is even worse. I still do what I can but there are many many days when my husband literally has to do everything for me. It is so embarrassing and I hate having to ask him for things or do to things for me. I constantly feel as if I am nagging him and adding to his workload. The thought of him cleaning out a commode pan for me several times a day was too much. There was no way I could live with that. I put off getting a commode for weeks as a direct result of these feelings and had many more falls than I needed to in struggling back and fore to the bathroom. Once I could avoid it no longer and the delivery day came, I found a well known online store stocked these bags containing an absorbent pad that turns to jelly when wet (a little like the inside of a nappy).
They tie closed and cover the worst smells too and I wouldn’t be without them. But why doesn’t the company who delivers the commode tell you about them? Why don’t they stock them?
Why did noone tell me that you can buy a long handled comb?
I have been finding it impossible to comb my own hair for months and been relying on my husband (who has had no hair for decades) doesn’t always have the most flattering results. Then one day whilst searching online for a lifting belt for him to help move me without hurting himself (which still hasn’t been delivered) I came across a long handled section with makeup applicators, toothbrush holder, brush and a comb. When you have your OT (occupational therapist) assessment at home why don’t they have this information? You tell them everything you are struggling with from opening drinks bottles to going to the toilet or getting out of bed and they can supply the larger items for you to hire whilst you need them, yet they don’t seem to even know about these smaller yet essential items that would easily and cheaply help so many people. I have even seen a shampoo stick online for when I can eventually get into a bathroom again I will be able to use it to partially wash my own hair with water again. I cannot wait!
So Naidex was missing all of these items and was full of the very expensive one off purchases people would make, because of course people who are disabled have £10,000 to spend on a wheelchair. Everything is so expensive and overpriced. Just because we can claim DLA (disability living allowance) or PIP (personal independence payment) does not mean we are rich. We have a lot of money we have to pay out for things that people who are not disabled don’t even have to think about. For example, the bags for my commode are around 70p each. That means it costs more for me to have a wee at home than it would at a major London train station, and one of the symptoms of one of my conditions is frequent urination. With me being home more now we are spending more on heating and electricity, more on the allergy friendly foods we have to eat. We each have a mobile telephone so that we can get in touch with each other immediately should anything happen with any one of us because we have no other family. Activities that may cost £5 for a child to do normally, will cost us £60 because of the supervision and special environments the children each need. The aids and sensory items needed just for the children to be able to sit down and relax cost more than a simple blanket would. So when it comes to needing an advance payment for a motability car so that I can leave the house with my family and enjoy it without being totally exhausted before leaving the driveway of £5000 is way out of our league, despite what the paperwork that doesn’t even ask about outgoings may say.
The whole motability issue is another post alone.
We were able to find a quiet corner for us to sit and have our lunch, topped up with a few hot drinks from the cafe on site and free samples being handed out by a food delivery service for the elderly.
G coped extremely well using an app on her iPad which communicates for her, immediately getting over the hurdle of selective mutism and allowing her to ask questions, order food and chat freely to people. That was a huge achievement for her on the day and gave her something to focus on rather than the numbers of people present.
By the end of lunch we were all feeling that perhaps this wasn’t the right place for us, despite us all being disabled, it didn’t feel that the exhibitors were there with anything relevant. We had a lot of balloons, stress balls from a legal firm that didn’t deal with wills or power or attorney, leaflets and booklets from companies who had some relevance to us but we would never be using because of their costs, and paper flags from an accessible hotel that I had hoped would have brochures with them on the day, but instead had discounts available for bookings last month or this. I do want to go there, but with five of us in the family it is still very expensive and not something we can just decide to do on the spur of the moment.
Once we left and found the promised Starbucks (which stocked almond milk) we had all had enough so decided that was it for us. I was tempted to go next door to the dementia and care home show as they would have probably had more relevant items and advice for my current situation, but they were closing down at the time.
I am not sure if we will ever return to Naidex. I would definitely recommend it if you are looking to buy a new wheelchair and want to try different ones out, or if you want to go to any of the seminars on the day (impossible as a family), or if you have friends who are members of any of the charities who were there- there seemed to be a lot of groups who met up there regularly. If you have won the lottery and are looking to adapt your home for someone with disabilities then it is definately worth a visit and if they improved the availability of everyday aids then we would return and I would quite like to be able to go to some of the seminars, but as it is I think we will stick to the Kidz to Adultzzz exhibition that we attended the week before Naidex.
It would also have been beneficial to have more charities present and local services for people, and to consider that people with disabilities are all ages.
Yesterday was an exciting day for me as my new-to-me tilt in space wheelchair was collected. It is wider than my previous self propelling wheelchair but has so many useful and helpful features. The side arm rests are height adjustable, the sides unlock and rise up vertically to allow horizontal transfers, the self propel wheels are quick release for transport or storage, there are two styles of headrest with it, a lumbar support cushion pad, leg rests with large foot supports, leg rests for raising your legs our horizontally, easy to use brakes, two ways for the carer to push the chair and easy tilting mechanism with hand brake for the carer to hold. I have been out in it today for the first time (going into the garden yesterday doesn't really count) and it has meant I could stay out all day with my family.
I am totally exhausted and nearly fell getting into the car at the end of the show, but was able to lie back as I felt tired and relax my head, neck and back. My little dog perched on my lap all day distracted people from my legs and arm tremoring and those who didn't notice the dog didn't notice me either..... The invisibility effect of a wheelchair!
I was worried about the chair tipping over backwards, sending my head first onto the concrete, so my husband stood on the back of the chair to prove that it wouldn't go anywhere.... Welcome demonstration although terrifying without notice lol.
An unexpected bonus of the wheelchair today was as a hiding place for our 7 month puppy who was slightly uncomfortable with the show bless her.
We have been to the shire horse show for the last three years, stayed all day every time and the children have thoroughly enjoyed themselves every year.
This year they had more independence than ever before, having their phones with them so we could get in touch as needed. They were able to go to the stables area, chat to the grooms, meet the horses, take photographs for me, chat with people showing horses and wander around the stalls in the arena.
One gentleman in particular was kind to them and brought a step out for them to be able to reach his horse, Poppy. They returned to see Poppy several times during the day, ending with them getting a wave in the grand parade which made their day. I don't know who the man is or which stables he is from but he really made a positive impression on them all and to wave to them in the parade was a lovely heartwarming touch.
The showground where the show is held is wheelchair accessible with a lift to the upper floor that surrounds the show arena. Downstairs the arena is sectioned off with metal fencing which is too high to see over from a wheelchair, but the view from upstairs is much better if you can get the angle right to not be blinded by the lights. That took some practice but was well worth it.
Despite how tired I feel now and how much pain I have in my body, I am glad we went and had a family day out, thankful for my new wheelchair and relieved to be home again without falling.
This gorgeous horse stood out from the crowd in its class lineup and I instantly backed it for a win. I was delighted when they won their class and also qualified for horse of the year.
This was my view on the ground floor. Utterly uninspiring and resulted in my daughter taking video for me to see what I was missing. Thankfully it only took around fifteen minutes of negotiation to encourage her to move upstairs so I could see.
We ventured into the food hall for the first time this year and found a stall selling honey roasted nuts, olives and baklava. By the time they had me try every flavour my allergies would allow I was feeling pretty full, but we all love this food so I may have bought a little too much (these are delicious basil and mint olives).
Before and after. Well worth the adjustments for a better view of the show.
The infamous Poppy
Two years ago I took my youngest (I was driving and had full mobility then) to this same show and she met and fell in love with one of the mares. This week we are finally planning on going to see her at the farm attraction she lives at (I have everything crossed that she will be there).
