Sometimes you can’t live in the moment. What if it’s an especially traumatic and challenging moment?

How do you recover from stressful events? How do you navigate them whilst they are happening?

Yesterday Amy was in pain with some acute skin problems. The result of this was that she was emotionally and physically distressed.

When she is distressed she rips at her hair, she pinches and kicks those around her.

She is impossible to console in those moments. All you can do is remain calm, and patient, and try your best to prevent injury.

Thankfully these moments happen less than they used to, but at the time I can feel my stress levels going up and up.

My jaw tightens and clenches, my muscles tense, and my heart rate increases.

In that moment all you can do is keep breathing, and remind yourself – this is how she communicates pain, this moment will pass.

Recently, Amy has had a few ambulances due to respiratory issues.

In those moments she is blue, struggling to breathe, retching, and looking lifeless. Adrenaline kicks in and I reposition her, check her obs, suction her, reassure her, and explain what I am doing.

I call for the ambulance. My chest is tight, my legs are weak. Outside I am calm. Internally I am a mess. Just get through this moment. The paramedics will be here soon, she will be fine, and we will all be fine.

In the ambulance my back twinges as I struggle to reposition my panicking child.

She is on oxygen and awake now, but highly distressed. Staff keep telling me to keep her upright, and I explain again that this isn’t possible with Amy.

The blue lights now are on to get us there faster. We’ll be there soon, this is temporary, this is about her, not me.

Continue to try and comfort her and stop her from injuring herself.

In the hospital I remain calm as I explain what has happened for the third, maybe fourth time.

I reel off her list of medications again, for the third, maybe fourth time. This is the process – don’t fight it. Just be patient and explain it. You’ll be home before you know it, hopefully.

Fast Forward a week.

Things are now much better health-wise. Life-threatening problems are now replaced with usual mundane daily problems like replacing faulty medical equipment, chasing meds from the hospital, and finding space to store tube feeding supplies.

We are on a nice family day out. The Autumn air is fresh, the sun is shining, Amy is in a good mood.

Immediately we are faced with “what’s wrong with her? Why is she in that chair?”.

I am grateful people ask – it’s better than staring, or ignoring. But my heart sinks a little. Why do we need to stand out? Why can’t we just have a friendly interaction that isn’t centered around Amy’s disability?

Inwardly I yearn to just be normal, to be boring even. What a novelty boring or normal is. I breathe through it and put on my friendly happy voice and explain once again that cerebral palsy is how the brain controls muscles and so on.

I make a call to chase some meds. I pray internally that the receptionist speaks kindly to me.

I sense the frustration in her voice as this is the third time I have called in a week. I remind myself to breathe and stay calm.

Don’t lose credibility and cry. “Why can’t you go to the GP for these meds?” I answer for the third time in a week.

I fight the urge to be sarcastic or emotional and explain that these meds are hospital only. I try to make polite small talk.

It goes ignored. I tell myself – maybe she’s having a really bad day or is extremely busy – don’t take it personally, don’t let it affect your day. 

In just writing this I feel myself tighten up and feel angry.

Sometimes it doesn’t feel fair to have to internalize so much sadness and frustration.

For now, in this quiet moment, I can process it all. I can take some time to enjoy a hot coffee, knowing we are home and that all is well.

I can enjoy that my phone isn’t ringing, all of my loved ones are safe and well, and I can be proud that we all made it through.

Sometimes you can’t live in the moment. Sometimes you have to endure the moment knowing that better moments are to follow.

Sometimes those moments you endured will catch up with you and eat away at you.

What do you do to deal with this?

Personally, I have anxiety medication, and counseling, and try in my spare time to get on walks and to the gym.

Exercising definitely impacts your mental health. It can lower your stress hormones and help you release feel good chemicals.

Some days I’m too fed up and exhausted for that – and that’s okay too. You have to listen to your body, and when time permits – give yourself chance to heal.

It sounds cheesy but self care really is so important. It’s harder to get in our lives as it can be so unpredictable. But any moment you can, try and do something for yourself and really savour and appreciate that moment.

If you are struggling – please go and see your GP. Talk to someone. Don’t just wallow and suffer.

Life is challenging for everyone, but when you have a child with complex health it is a constant concern over their health, and navigating the often difficult system that surrounds them.

Frustration is being exhausted all day, but unable to sleep at night.

Frustration is chasing that medication for the 3rd, no, 4th time this month.

Frustration is spending 3 hours packing, only to forget something vital.

Frustration is, being desperate for a break, but when you get it, feeling guilty and unable to relax.

Frustration is, trying to retain credibility whilst holding back tears so you don’t look like you can’t cope.

Frustration is, finally being ready to go out but the beeping won’t stop.

Frustration is, finally getting the perfect spot, and then someone blocks your ramp in.

Frustration is, trying to divert your child’s gaze away from the park that has nothing for them.

Frustration is, having all of the thoughts, but not being able to put them into words.

Frustration is, only needing one kind voice, and then the secretary is rude and unhelpful.

Frustration is, knowing you know your child best, but spending every moment of the day second guessing yourself.

Frustration is, respecting the opinions of the professionals, but not feeling it is always reciprocated.

Frustration is waiting for planning permission, funding, someone else to say yes or no.

Frustration is fighting hard for the support you get, but living in fear it could be ripped away in a heartbeat.

Frustration is, finding the right meds, but then them having debilitating side effects.

Frustration is,a look of pity or judgment.

Frustration is needing some silence when the world feels like it is screaming at you.

Frustration is, millions of toilets for able bodied people, but barely anything for those who are not.

Frustration is working harder than most, yet often viewed as just a “stay at home parent.”

Frustration is adjusting to higher running costs for the house, but being unable to earn more than 30p an hour.

Frustration is spending your life on street view working out if somewhere is actually accessible because sometimes “there’s just one step” isn’t good enough.

Frustration is not being able to calm your child’s meltdown and feeling like the worst parent ever.

Frustration is your child being in pain and knowing it could be any one of 100 things and having to work through a list of guesses.

Frustration is uncertainty. Never being able to be complacent. A hospital admission could happen at any moment.

Frustration is seeing so many bad things happening to good, innocent people. Especially within our SEN community.

Frustration is knowing that money would transform our lives with equipment and adaptations but all of this being out of our control.

Frustration is not being understood by everyone not in our situation.

Frustration is having to say no to invites, but fearing one day the invites might stop.

Frustration is, knowing this list could probably go on and on, endlessly.

I accept that frustration is an inevitable part of life. I sometimes wonder how and why I was ever frustrated before being in the life I lead now.

I so often wish I had the problems I had 10 years ago compared to now.

Whilst inevitable and exhausting, frustration is a necessary evil. It spurs us on to concur another day. It lights the fire inside that keeps us fighting, advocating, and caring.

It makes me a better person. 

Recently I feel I have been at my most calm, and yet when someone blocked our van in at a park last week, I honestly felt like screaming.

I left a note on their windscreen. I worded it calmly but sternly. I carried that anger for days.

Why would they do this? Why did they park illegally? Can they not see the 10+ stickers all over the back of our van? 

These micro annoyances can accumulate and gain traction and cause us to be embittered and infuriated… but carers do not always have the emotional and physical resources to sustain this level of frustration.

I feel like over the years I have become much more resilient and much more careful in how I pick my battles.

Some battles can’t be won.

I still think there should be much heavier fines and monitoring of those abusing disabled bays and double yellow lines etc, however I am only one person.

I know my feelings are shared by so many others in the community and whilst we do what we can, sometimes the world is just ignorant and unfair.

I’d like to believe in karma and hope that one day these people will be taught a lesson whereby they regret their selfish actions.

But until then, coffee, naps where possible, and cuddles with my sweet girl who makes all of this worth it and then some

Prior to having Amy, my knowledge of wheelchair-accessible vehicles was very limited (and to a degree still is).

Until you are in our situation you perhaps don’t really have cause to think about it.

I had a teacher in high school who was a wheelchair user.

I remember seeing himself transfer into the driver’s seat of his adapted car and fold his wheelchair into the back. (He was an incredible teacher by the way, in spite of all of the detentions gave me; and even taught my mum! RIP Mr Bean. Yes that was his real name). 

This was literally my only experience of disability and travel other than seeing the resource/children with additional needs on their school buses in primary school. 

We are fortunate enough to have a WAV (a wheelchair accessible vehicle). 

Here in the UK if you received the high rate mobility component of DLA or PIP you are able to apply to use that money towards a suitable vehicle.

It’s more complex than this, of course, there can be huge deposits for which you can apply for grants… and not everyone is eligible for grants.

When you first start to look into getting a WAV it’s a daunting experience. There is so much information to take in, and so much research to do.

I always said I would never drive a big car. I am an anxious driver and feel safer in a little car.

So it has been a huge obstacle to overcome agreeing we need the van.

We now realise that Amy and her equipment are growing, and her health needs have increased too meaning more supplies coming out with us.

This means our next van needs to be bigger.

I am already filled with dread at the prospect however I do feel positive that it will enable us to go on more UK holidays in just one vehicle instead of two.

Recently a friend was going to meet us in town for a special event.

She had opted to take the bus with her wheelchair-user daughter.

She waited a long time for the bus and when it eventually arrived the driver said there was no room and drove off.

He didn’t check to see if there was any other option, and he offered no empathy.

My friend was understandably upset and I was infuriated for her. The reason they couldn’t board the bus was because there was a pram on and a wheelchair already.

I have since looked into this because I thought the rule was all prams have to be folded down for wheelchair users and that wheelchairs take priority.

I have since found out that most buses only allow one wheelchair user.

I understand that this is for health and safety reasons but what if two people were friends and wheelchair users?

They have to not get the bus together? 

In my research I found the following:

“If a wheelchair space is occupied by standing passengers and luggage, you might not be able to allow a wheelchair user on the bus.”

Now I completely get it… we can’t expect people to magic up space for the wheelchair user. But LUGGAGE!!

We’ve not been able to go on a train before because of luggage in the wheelchair bay and it enrages me.

You would hope that with all of the technology at our disposal these days that buses could be designed to have seats that can fold away properly and safely to accommodate extra wheelchair users.

I don’t want to come across as self-righteous or entitled, but it honestly enrages me that people are being left out in the rain waiting for another bus hoping that this next one isn’t full to capacity… all whilst the person may be trying to manage a chronic condition.

It makes me feel that our society isn’t quite as developed as we think and that more attention needs to be paid to ensure that everyone has the same opportunity to take the bus somewhere.

I also read “Only buses that can carry 22 passengers or more have to be accessible.”

It frustrates me that companies will always do the bare minimum to meet the legal standard. (This info was taken from citizens advice)

Why can’t we do more? We have an aging population… more poorly children are surviving.. There are more wheelchair users than ever before and this is likely only to increase.

I haven’t had the courage to get the bus with Amy since our last time, which was many years ago.

The actual boarding on and off is fine, I am pleased with how buses can be lowered to help people get on, but I still feel more needs to be done to ensure no one is turned away because they have a wheelchair.

I know things have come a long way compared to the past, and I am glad progress is being made, but something about it still doesn’t sit right with me.

Have you any experiences, positive or negative, of getting the bus?

I’d be keen to know the experiences of others.

For now I remain reliant on our van, but worry that if at some point we are left needing public transport, that things could be less than ideal.

Send coffee. Send chocolate. Send help (Insert other generic mum jokes here).

I would have used a lovely picture of Amy ready for her last day of school for this blog.

However, I cannot because in spite of my constant effort to be organised, I got my days mixed up, misread the term time calendar,  and actually thought tomorrow was her last day.

So as I type this I ache to my core. I have somehow managed to condense almost two days of child free errands into one day.

I have feverishly prepped meds and feeds, I have re-organised Amy’s room, I have returned phone calls that I missed whilst I was at the gym earlier, I have walked the dog, amongst many other tasks.

Excuse of course the messy bedroom pictured, I am sure we would all have much preferred the beautiful last day of school photo that will never happen now!

I don’t feel the dread many people feel in relation to school holidays.

I look forward to Amy being around lots more and seeing what adventures we can get up to. But I do dread the exhaustion that will come with it. 

I have been making a more conscious effort to get her in her walking frame more, and to hoist her more.

It’s all quite time-consuming but I know it’s the right thing to do.

The easiest thing isn’t always the right thing.

If Amy could have her way, we would spend the whole day walking (and she would have her music on the whole time or cue frantic angry hair pulling.)

Much as I love trying to get fit and getting out into nature, it’s physically very demanding.

This year more than ever, now that Amy is 8, I find myself comparing her childhood to my own.

It’s not necessarily a good thing to do, but I think it’s natural. 

It makes me realise just how much additional planning goes into things and also how non-inclusive so much of it is.

Almost every holiday club or activity day seems to be geared towards able-bodied/neurotypical children.

It’s just another thing we have to miss out on. We don’t get a choice. Every time an ad comes up on my social media for it I feel resentment knowing that there isn’t any point even enquiring.

Why is it that people who need the help the most are the ones left without? Why don’t our children get the same opportunities as their peers?

I have mentioned to people before how in the school holidays we struggle to get basic day to day jobs done.

Those not in our situation have sometimes retorted “oh well, jobs can wait! There’s always tomorrow!”

But sadly no. Constant daily soiled bedding, management of tube sites/maintaining hygiene, preparing meds, medical interventions etc don’t all take a day off.

Sure, some of those things probably could wait a little, but realistically no. Our house has many 100s of invisible cogs turning. If one cog gets jammed then everything comes to a halt, or worse. 

Unfortunately for us, independent play is not possible. My daughter’s level of enjoyment and activity is dictated solely around what those around her do for her.

It’s a lot of pressure but I do feel an almost constant guilt that what I am doing isn’t enough.

I also feel bad that sometimes I really would just like to rest.

As a child I was great at independent play, I was (and still am) quite introverted and would happily draw all day, read, or colour in. I would watch films (sometimes the same video over and over!) and whilst I know I will have been hard work for those caring for me, I know that a lot of the time I was quite easy in some respects.

So really comparing doesn’t work. Amy dislikes crafts, doesn’t enjoy being read to, and isn’t really interested in teddies.

Even if she was, she would still need someone there to facilitate it all. I worry sometimes she must be frustrated, or bored with me.

It’s a constant journey mentally.

Some of our days out go spectacularly well, others a disaster. I guess it’s the same for any family.

But I do find that sometimes if Amy really dislikes something, it puts me off going again.

For example, the last time we went to an aquarium she had a particularly bad episode of irritability.

I am not sure if it was a sensory issue as the place was busy, that she was in pain, or that she was bored.

Whatever was going on, she was inconsolable.

It was a scramble to get her back out of the building as it was so busy. It was disheartening because once again she had had a bad time doing something everyone around her loved.

The same happens at the cinema and in certain coffee shops. I know that part of it is lighting and space.

I have noticed over the years and can now enter somewhere and know whether or not she is likely to become distressed.

Getting the balance between trying new things and sticking to what we know is hard.

We want to broaden Amy’s horizons and give her every chance to enjoy so many things.

Equally,  we have to conserve energy and carefully choose what to do.

Otherwise, we risk causing all of us mental health issues, wasting money, petrol and energy.

Sometimes she will surprise us and on the day thoroughly enjoy something new – or she may enjoy something she usually dislikes whilst with carers.

It seems many stars have to align for the best days… lack of pain, not too tired, not too many seizures, correct activity at the right time of day, suitable music/toys etc.

This year I am compiling a list of things to do, and places we would like to go.

Obviously, this is always subject to change. Lack of sleep, illness, mood, many things could affect this. Then of course, fuel costs, prices for things, changing facilities, weather and so on too. 

Amy likes lots of position changes and activity changes.

This can all become very tiring, but I am hoping to try to eat sensibly, stay hydrated, and as rested as can be so that I can be the mum she needs me to be.

It is rare for her to want a “lazy day”, there is never an option to just pop a film on etc and I have accepted this. 

What are you doing with your school holidays? Any tips to get through?

Wishing everyone all the best.

There appears to be a bit of a misconception amongst our local community (and indeed further afield.)

You see, recently I saw uproar on social media about the recent cost of living grant issued to many homes across the UK. The money was intended to help those with financial difficulties cope with the sudden rise in costs of UK living.

The media did not help with its phrasing of headlines clearly designed to cause anger and provoke a reaction.

People took to the keyboard slating all recipients as “lazy”, “spongers” “scroungers” and well, other things that wouldn’t be very nice for me to type here. Much of it was directed towards people in a similar position to us.

A position I never expected to find ourselves in.

I watched as people defended why they needed that money. I watch people enraged because they work long hours everyday and “get nothing”. 

I saw some really, really unpleasant things being said.

There is a definite attitude that people with disabilities are just given “free money” or “free housing” or “free stuff”.

I recall a post a long while ago where someone outright suggested that people with autism are given free toys and everything they need.

So I suppose my question is – where can I sign up for this free lifelong money please? It sounds wonderful.

Jokes aside, financially things are tougher than ever for so many of us.

We recently had problems submitting a new gas meter reading and our “smart” meter had stopped working. We got it replaced to be told we owe £79 000! Imagine our surprise! Thankfully after a few weeks of back and forth emails and calls we were informed we actually only owe £797. (Only! She says, as if she has more than £2.70 in her bank account right now.)

You see families like ours have much higher operating costs! A height adjustable hospital bed, a feeding pump, suction machine, ceiling mounted hoists, constant kettle boiling for sterile water for tube feeds, the extra washing, the extra showers, the stoma site care and management.

I could go on and on. Everything needs charging, or some sort of regular maintenance that requires some form of energy.

Hospital stays. This requires so much more money than you would expect! 

Days out. Fuelling a wheelchair van that has to transport a big heavy wheelchair and medical equipment everywhere.

I think though, unless you live our lives, you can never truly understand the picture I am trying to paint here.

Families are scared. How will they heat their house this winter? There are people choosing between food and heating. 

Of everyone I know in a similar situation, I think generally they would all tell you the same thing.

They would tell you that working full time is a privilege. They would tell you how much they miss work. The productivity, the distraction, the social aspect, the money, and so many other things.

They’d tell you that they miss being able to leave the house with purse, phone and keys. 

That they miss every phonecall causing that sick feeling in their stomach. “Oh gosh, not another ambulance is it? Is she okay?”

They miss being able book time away at places without researching for months about adaptations, grants, and whether or not they can afford it let alone manage without the care and respite they qualify for.

One of the biggest lessons I have learned in the last 8 years was not to judge.

I remember being a full time employee in an office.

I cringe telling this story… but I remember one day having a bit of a rant and outburst about the amount of charity fundraising we constantly did. It was always sponsored run here, bake sale there, non uniform day this, mountain hike that.

To my defense, at the time I was pregnant and saving every penny to pay towards a deposit on our first house. I had done 60 hour weeks and the exhaustion was getting the better of me.

So what I am saying is – I get it.

I understand fully why people are angry. 

I realise now though that their anger is very much misplaced.

That £326 doesn’t even go half way to paying the energy bill that just shot up. I can’t just go and do some overtime. I can’t go and get another job, much as I would love to.

I tried working a few hours a week a few years ago. It was a disaster.

I would regularly come in absolutely exhausted with carer burnout from lack of sleep and constant medical intervention etc. Or I would be unreliable due to my daughter’s constant chest infections and seizures.

It caused so much stress.

Pay day would come. I would be excited to be earning my own money again to find that my earnings meant less universal credit payment.

I realised that I was basically working for free whilst everyone else around me got paid… and yet none of them were providing 24/7 care to a very medically complex dependant.

In addition to this, since the pandemic, charities have been impacted massively financially.

Lack of funding can mean that eligibility criteria becomes much harder for people to meet and thus more people are unable to access grants that previously they had qualified for.

At night I worry constantly. About society’s judgment of us. About what I will leave when I am gone. About money we will never have.

I know in my heart that carers contribute a tremendous amount to our community. We save our government millions every year.

We don’t get sick days, we don’t get annual leave. We don’t get an appraisal and often suffer with isolation, lack of self worth, and also worse health. We don’t get a nice pension plan. We do what we do through necessity and also love.

We don’t live in free big, fancy houses.

Many of us have had to sell our unadaptable homes that we had worked so hard for.

Many of us have had to campaign relentlessly to get the adaptations to our homes that we need to safely care for children. No one is just “given” anything.

Many live in unsuitable, cramped housing, unable even to get a wheelchair through the door.

Services are constantly under threat for us.

We worry constantly about respite funding, transport and education funding, NHS funding and so much more.

It’s mentally exhausting worrying the amount we do. We feel constantly like we need to defend anything we get, no matter how little it is.

So if you’re reading this but not in our position, I really would implore you to have a little more and compassion and actually to become an ally of ours. We are not the enemy.

Do not believe the headlines when they’re out to get clicks and comments. Think about what we go through each day and celebrate actually how beautiful and precious life truly is.

The irony of all of this is that actually now I would be a better employee than ever. My admin skills are second to none, I am more patient than ever, I am more direct and efficient, I am skilled in many areas.

I am so much to my daughter. I can do medical procedures and interventions I didn’t know existed, and never thought I would master.

Be kind to yourself. You are doing absolutely brilliantly. What the outer world thinks is of no consequence. You know your own truth and importance.

I know that there will people who disagree entirely with everything I have written here. But know that I do see both sides.

And know that until you walk a mile in our shoes that you can never truly comprehend how our lives look.

One of my favourite lyrics is “I’m holding onto a fairytale. We’re moving forward but we’re not there yet.”

Change is inevitable. Attitudes change. Stigmas get challenged.

There are days where I am grateful to be living in the age that we are in. Though things can be far from ideal, and there is always a long way to go, things in many ways are getting better.

I am grateful for the continued increase in changing places facilities for example.

More of these being available shows an acknowledgement and agreement that people with disabilities do indeed deserve the same toileting privileges as everyone else and to be able to stay out for longer.

I am grateful to the many businesses now incorporating PODD/PECs symbols into their menus and other paperwork so that those who communicate non verbally still have a voice.

I am grateful to the few parks out there that make sure there is something for everyone of every ability to enjoy.

I am mindful that only decades ago, a child with a lesser disability than Amy’s, would be encouraged to be raised in a home for deaf people (or in some other way institutionalized).

I won’t go into it any deeper so as not to spiral into an existential crisis, but least to say progress has been made.

The treatment of disabled people historically has been nothing short of atrocious. Still today I am aware of things happening that should not. It honestly terrifies me and keeps me up at night.

I am ever grateful to everyone out there who has campaigned for change. Campaigned for rights.

They shouldn’t have to, but I am glad that they did.

It is so easy to ostracize and make vulnerable any type of minority but I feel that generally more and more, maybe in the advent of social media and awareness being raised… that more people are being given a platform to make change.

In spite of all of this gratitude, it still pains me that prejudices do and always will exist.

Families like ours live under constant threat of vital services being removed, funding being revoked, changes to benefits and so on.

We already live day to day with medical uncertainties of the person we care for. We make constant almost daily decisions that can be potentially life changing. 

I seem to oscillate at the moment from “the world is starting to understand… things are getting better” to then plummeting into a state of existentialism and fear at the state of the world.

I know that it isn’t just families like ours that feel it. The pandemic and other world events have caused so many of us to think about the more severe what ifs in life.

I spent a lot of the last month with heartache over the Ukraine situation. I wonder how on earth a family like ours may fare if faced with that same situation.

A trip to the supermarket is enough of a well planned mission, never mind fleeing terrified from our country.

I suppose it’s all about perspective.

Recently we were informed that our town is finally getting some Changing Places facilities.

I can’t say enough about how much this will transform our days out. However the negative side to this is that when those facilities are closed due to repair issues etc, it feels like the ground beneath me has shattered.  

It’s hard when you plan a day so meticulously and account for every eventuality and then you’re faced with the dreaded out of order sign.

It happened to us last week at the city hospital. I had been trying to get a urine sample from Amy for a few hours and was required to transfer her from chair to bench several times.

We are a week on from that day and due to a broken hoist my back is still so tender from that day.

In many ways I’d say in my 8 years of being Amy’s mum, things have changed for the better.

However, the more we go out and access the community the more I am saddened that there are still so so many shops and cafes etc that we can’t go in because of the steps.

I know for many buildings it may not be possible for whatever reason, but it is still so disheartening.

Not having access feeds into feelings of “we don’t belong here”, “we aren’t wanted”, “we have once again not been thought about”. It’s not a nice path to go down and obviously I can be prone to being oversensitive. 

I just want to live in a world where everyone has the correct treatment and opportunities.

Where considerations are made to ensure something is accessible and inclusive.

I don’t want to spend my life constantly wondering “will we get through that door?” “what will we do if we can’t change her there?” and so on. My other worry is also people’s attitudes.

If Amy is being noisy and having sensory issues/behavioural challenges, I want for people to understand and accept. I know it isn’t ideal but at the same time i don’t want to have to be nervous of other people’s reactions.

I wish more common sense to prevail.

If somewhere is still “one parent only” due to the pandemic – make an exception for someone who otherwise requires two carers!

This isn’t asking for “special treatment”, to me this is basic common sense. Let people have what they need to survive and then thrive. Ask yourself if you were in my shoes would you be able to do all of that by

What do you think? Are things changing for the better or the worse? 

What changes would you like to see?