Goodbye holiday homes trust

This week we had our last holiday with the holiday homes trust. They are closing later this year sadly after operating for decades. Another victim of the costs of living in this country.

We took our daughter's friend with us on this holiday in the hopes that they woukd do some activities together and she wouldn't spend the entire holiday in her bed as she usually does. They came out with us most days and went to the tots disco most evenings too. There were still days and vast periods of days where they were in their room, daughter refusing to go out and friend bored and stuck there.

We were able to leave the caravan and go to the bar, pool, entertainment, beach and shop knowing they were safe and close by. Our son was able to go out to the shop and arcade and not have to babysit for us all the time. We changed our diet completely for the week and I dont want to have chips for some time now, but it was all eaten without complaint.

 We had all the toddler foods along with bacon for breakfasts from the on site shop.

Spending money was a point of contention as daughter refused to spend even 1p of her pocket money, only using the extra we had pricided for the week, despite at one point her having more money than we did and we were paying for 5 people's drinks and meals!

Being able to get around, access everywhere and feel less of a burden was everything.

Our caravan was truly accessible although I dont understand why they insist on not having a double bed for disabled people. We do get married too. I spent the week sleeping in the gap between the two beds we pushed together.

Today we are travelling home in the rain, again stopping for chips en route, then back to clean the house as our pet sitters have historically left it in a dirty mess and then with loads and loads of washing to do of all our clothes, bedding, towels and swim wear too. Worth the break.

Bonfire night

Every year since my youngest was very young and had a panic attack at a fireworks show, we have stayed home for bonfire night.

At the time we knew she had sensory processing difficulties and autism, but fireworks had been a spectacle until that night when even her noise cancelling headphones didn't help.

This year was the first for a while where we have all been together in the back garden for a few fireworks. Usually my husband and I go out in the rain with our son whilst our daughter watches from indoors. This year we had our usual small collection, glued into a box for safety and my husband lit each one in turn as my children and I watched from the paved area. 

We have pets, we play music to calm them and stay with them except for our few minutes of fireworks. I feel for those who's PTSD is triggered by fireworks, mins is triggered by a certain look of man and certain cars. Currently someone on Strictly is triggering my complex PTSD and causing me nightmares. Honestly and diagnosed. I so understand what it is like to be triggered.

Also if you look at the origins of why we celebrate bonfire night in the first place it is dubious. Why do we celebrate a foiled explosion by exploding things?

Nonetheless, it was nice to be together for those few minutes, then to enjoy sparklers with my son before retreating indoors once again to keep our animals company.

Autism, c PTSD and disabilities aside, we managed to carry out a family activity all together at the same time 🌈 

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

Lockdown

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.

Understanding what people are dealing with

I just posted a couple of Instagram messages about my afternoon so far and it struck me how different things are this year.

This is apparently the hottest UK Easter for 70 years and my first where I am really having my eyes open for the first time. By that I mean that I am unable to rush around like I always did, unable to pop out here and there to do this and that, instead having to take life slower and with more care. I don't know what my future will hold with my health as it is, so am really trying to take things in.

For example:

Today.

It is a gorgeous day here, easily in the mid 20's Celsius. I woke determined to get out into the garden for at least part of the day to enjoy the sunshine, rather than sitting in bed and being stuck looking at the same four walls again.

With having to be careful with my energy and pain levels, I had my hair washed mid morning and then my husband took me out into the garden to chat with my friend over a cuppa. We put the world to rights, had a good whinge each, then I went back to bed for a rest for a couple of hours.

Once feeling a bit recharged and rested, I didn't want to be stuck indoors again and my wheelchair had been left unfolded where I had left it for a change. Knowing that if I made it outside I would be stuck out there until my husband got home again, I carefully transferred myself to the lovely commode, then to the wheelchair to attempt the obstacle course to the garden.

This involves manoeuvres around my rise and recline chair, squeezing between my clothes drawer and the door, then, whilst holding the door open I have to open the stair gate to the kitchen. Whilst holding the stair gate open with one hand, I use my feet to hold the dogs back then grab the walls in the kitchen and pull myself through the gate and over the threshold. Then I have to spin quickly to close the gate before the dogs make a run for it. The next part is spinning back around to zig zag through another doorway to the back door. The threshold at the back door is pretty high (it is a PVC door) so I have to use an elbow to hold the door open whilst trying to lift my front wheels outside. My wheelchair completely fills the doorway so there is no room for my hands to propel me through the door and down the ramp. I have to grab onto the external walls of the house and launch myself out and down the steep ramp into the garden. All of this can only done if my wheelchair has been left where I can get into it without needing to walk, and if it has been left reclined with the rear support wheels extended.

Today is the first time I have done it by myself without my husband there to catch me if I miss the ramp, scrape my knuckles badly on the door or tip out. I am so proud that I managed it.

As soon as my wheels hit the patio my two girls, G and A were straight out into the garden with me wondering how I had got there alone. Sadly the step into the grassy part of the garden where the children play is out of my reach as my chair won't fit through the gap and the step is very high, but I can see them through the gate, bouncing away on the trampoline together, rocking on the bed and chasing the dogs about.

I also posted about the gate to the grassy area. It is almost like a secret garden. We have an average sized patio immediately outside the house, then a step up through a gate to the rest, which is on the larger side. It was one of the main reasons we chose this house if I'm honest, we all love being outside and there is such a rich education to be gained from the outdoors.

I won't repeat the post, you can find it on my Instagram feed below, but it made me think about the children's lives as they get older. How the things we see as simple can be so difficult for them to get their heads around, and how time consuming they can be for them, causing huge levels of frustration. I recognise it in myself now when I try to do something beyond my physical capabilities, but for them it is far less obvious or predictable.

We had the Happy senso gel (look it up online if you haven't heard of it.... It is amazing) out earlier on with one of their friends who also has autism and sensory processing disorder. They all love that gel (as do I) as it fizzes, pops and chills your hands and fingers, leaving no residue but a lovely scent behind (and no, I am not paid by them). They all love being on the trampoline and the rocking bed we have up on the grass too, but asking them to do a small task, or a simple adjustment out of the ordinary or expected completely throws them. This happens if I suggest they get a drink when they hadn't already thought of it, suggest they move to the shade to cool down, or ask them what they fancy for lunch.

Life has become all about wording things carefully, minimizing choices and decisions, maintaining the status quo and trying to predict any difficulties before they arise, whilst also trying to manage my own pain and energy.

Read that last part again and think about how you would do that with a family of five in total, perhaps to go to a trampolining class where they need to take socks and drinks too. We have the anxieties over leaving the house, new people maybe being at trampolining today, which bag to take, which socks to take, what to drink, where to sit in the car, who is going in first when we get there, which trampoline they will start on today, what the weather is like, do they need a coat? A jumper? Any joint supports? Hair bobbles? Earrings out? Then the wheelchair has to go out the back door, through the above obstacle course, then the dogs have to be got back into the kitchen so the side gate to the car can be opened.... It takes an age and a whole lot of energy to just get out and into the car.

Now extrapolate that to a full day, starting with them having breakfast, dressing etc.

Describing something, or how to do something is equally long winded. Everyone has their own way of thinking and understanding, and with autism this just becomes more evident. G isn't very logically minded but learns quickly by watching and listening to how to do something. A and J are more practical and cannot handle the demand of having someone else show them what to do and then know that they will be expected to repeat this. They learn better by trial and error with odd suggestions carefully worded so they think they were their own ideas. All of this is great when we talk about something like putting on a pair of shoes, or getting dressed. Think of this when it comes to crossing a road, visiting a new park or trying a new activity. Suddenly it becomes more complicated.

I have heard it said before that living in a house where a child has autism can be like living in a war zone, in that you are constantly in a state of alert, ready to help your child/ren through any meltdowns, if they become overwhelmed, anxious or withdraw. You are also constantly scanning their surroundings and situations for possible flash points and triggers, trying to balance whether to intervene or see it as a learning experience to a point, or withdraw immediately. The parent of a child with autism is a fighter. We have to be. We have to fight for our children when others tut at them because they are ignorant to autism, when others stare or dare to comment on our parenting. We have to fight for their diagnoses, for any support, for any therapy, for any sensory diets, any additional assessments they may need for any co-morbid conditions and often we also have to fight for our family alongside all of this due to the immense pressures caused by external bodies.

Now and then there are flashes of autism in the media, generally one extreme or the other, people pat themselves on the back for raising awareness, then it all goes away again until next year. Families and friends of those with autism live like this every single day. The person who has autism has to live with it all of the time, forever. They may be sat next to you now and you might not even realise it.

They could be that person who didn't hold the door for you earlier, the person who took an age to park in the car park yesterday, or the person who chooses the same CD every day in the local supermarket. They could be the child that screamed at your child in the park last week and then hit their mum when she tried to help the situation, the little girl who wouldn't leave their mum's side at the birthday party or the teenager with their hood up and scruffy looking joggers on and holes in their shoes.

Please be more aware, educate yourself, offer support to anyone you know who is living with autism, offer an ear to them, remain open minded when meeting new people of any age..... You never know what anyone is dealing with and how much of a difference your kindness and understanding could make.

10 things I didn't know a few years ago

1. Autism is a spectrum with symptoms, difficulties and strengths as varied and wide-ranging as all the birds in the sky.

2. Pathological demand avoidance is one part of the autism spectrum.

3. Girls with autism present remarkably differently to boys with autism.

4. There are such things as early help, children in need meetings and assessments.

5. If you know something i wrong, don't let any 'professional' fob you off.

6. Fighting for the rights of disabled children and adults is utterly exhausting in every possible way.

7. There are no books in our local library where Mummy is in a wheelchair.

8. Children are amazing as young carers, but the guilt is unreal.

9. Your health really can change in an instant so live every day to the full.

10. Just how terrible life is in our country for people with disabilities.

#Autism #Disability #PDA