Surprise

So yesterday, out of the blue, Nate decided to give a little reminder of how much he can scare us. It was only a “mini scare”. A shallow dip in the scare ocean if you like. But it stands out as a stark reminder that situations can change in an instant, and how ATRX syndrome can result in sudden medical complications. 

I wrote a post last year which touched on my own anxiety and depression ( and then promptly bottled sharing it) which mentioned briefly that when I am stressing or struggling, or just plain busy, something will crop up with Nate as if to say...

“Ha! So you thought you had something to feel anxious about did you? Hmmm? Well... dadaaa... here’s something to really worry about”. 

Pretty much summing up my parenting and how we have functioned as a family for the last 8 years ( minus the wine), simply swopping one stress or anxiety trigger for another.

One of Nate’s indicators that he is brewing something of the infection variety is a slightly higher than normal (for him) heart rate overnight. Unfortunately historically this would sometimes be followed by a sudden spike in temperature and a struggle to control his breathing. This is something he hasn’t had an issue with in years so yesterday when his temperature reached 40.5 with a barking cough which was making him retch, oxygen sitting at 88, and shaking all over I was, I admit, a bit concerned. This could either result in a rapidly increasing oxygen requirement and a need for urgent medical attention, or his temperature would fluctuate and his breathing eventually settle. We have been there- waiting for an ambulance while Nate’s oxygen need has risen rapidly, panicking about what to do next. We have carried him into our local hospital shouting “ he’s not breathing”. We have watched him seize, and then are the times we have managed him at home. So not symptoms to be ignored.

There is a huge focus on emergency care plans as the “go to guide” of what to do in certain situations, but they don’t cover all scenarios, may be too brief or even too detailed. As parents we go with our gut. And my big gut was telling me it hadn’t got a fucking clue which way Nate would go with this infection. I was hesitant about ringing for an ambulance as although he wasn’t great, he was still responding. 111 were massively out of their depth and requested an ambulance for us anyway. The next issue was around which hospital to go to. I had a meeting with Nate’s respiratory consultant earlier in the year to write his emergency care plan and I wanted to include something describing the need to go to the main hospital responsible for Nate’s care so long as he was stable, rather than our more local hospital where he can’t be admitted due to his nasal ventilation. Unfortunately I hadn’t realised that during the passing around of the plan to all of the consultants involved with Nate’s care that hospital transfer statement had been removed. The main hospital refused to allow Nate to be taken there yesterday as they were incredibly busy and we ended up at our local hospital instead. For hours. And hours. Then we waited for transport to take us to the main hospital anyway. By this time Nate had perked up and we would have been happy to take him home. He had been observed for hours but hadn’t deteriorated but ( and rightly so) a dr to dr conversation with respiratory at the other hospital meant he needed to be kept overnight there. 

The pressures on our NHS are so huge, and as we are now well into the winter illness season beds were in high demand- Nate received the last available one. We waited until 5am for a bed on a ward only to see a consultant at 9am and be allowed home. The discussion between the two hospitals hadn’t accurately reflected Nate’s respiratory needs and the consultant made their decision to transfer and observe based on the information they had received. 

On escape from the ward ( still wearing his pjs) Nate was squeezed into a wheelchair services appointment ( don’t even ask how long it’s taken to get assessed, fund, and receive a new chair) there was no way we were missing it! As a result Nate has a new proper wheelchair, not a special needs buggy anymore. 

Somehow in the transfer between hospitals we lost meds and Nate’s emergency plan so I have spent much of the evening visiting both hospitals to locate said items, and now I am sat here, after about an hr and a half of sleep at around 5.30 this morning, having a glass of red before I inevitably pass out ( through tiredness not wine) as we have a carer in tonight. I’m pretty sure she thinks I have an alcohol problem, but it’s more the fact i can enjoy a glass ( or 2) when she is here.

 *cough* or 3.

Having medical care divided between hospitals is a massive pain in the arse. But really it shouldn’t be. Communication is key, and should be done well, but in high pressure situations details can be lost. Much of the decision making yesterday was left to me but as Nate hasn’t presented with respiratory issues for so long I truly couldn’t predict which way he would go so erred on the side of caution. Which I would do again. We have worked hard to keep our Nate alive and well. He has a fantastic quality of life and we will always do everything we can to preserve that. If you speak to me about Nate I always try to stress how happy he is, how loved he is, how much he loves his friends, family and carers, and enjoys a wide variety of activities. On paper he sounds terrible. I think I’ve spent at least 4 of the last 24hrs talking about all the things he gets to do, where he goes, and what he enjoys. I think I muttered “ non verbal, non mobile, gj fed, hypo ventilation... blah blah blah” a few times, I don’t like people to fixate on those things. 

Focus instead on this... 

What did you do in the holidays?

Summer holidays throughout my childhood  were all about my lovely grandparents, days out, and reading. My teenage years involved staying up late watching MTV, angsty music, long lies in, looking at posters in Athena for hours followed by the pictures (cinema) with my school friends. When I look back at my student summers they are a blur of working, and night after night out in town curing hangovers with berocca and red bull. As a new teacher without children my summers were full of festivals, visiting cities, wine, and being skint. When my daughter was born summer holidays suddenly changed again. I felt enormous pressure to fill her every waking moment with stimulating activities and experiences in this world of competitive parenting. All of which exacerbated my own insecurities of being a rubbish mother.

My daughter was nearly 4 when Nate was born. Larger than life. Inquisitive and hilarious. Nate’s first summer was spent in SCBU and there was always this nagging feeling I needed to claw that time back somehow. My children HAD to bond and we needed to start our journey as a family, making memories along the way. Nate was small and frail for the subsequent summers and we worried about venturing very far away from hospitals who knew him well (as he became ill very quickly), but we were determined to go out and about as much as possible for our daughter, and our own sanity.  Around this time Nate continued to spend so much of his life in hospital that we attempted to squeeze in as much family time as possible while he was home and relatively well. Even while on oxygen it was fairly easy at that point to throw Nate in his car seat and be out for the whole day without any issues. 

Now, aged 8, and around 30kg, just leaving the house with Nate feels like a huge accomplishment, some sort of cardiac workout in itself moving him to his wheelchair and then clamping it into the car. We need to plan for being able to change/ toilet him therefore must either visit somewhere with a “changing places” facility i.e a bench and hoist, or be home within a few hours. Just like any child my son needs to be fed. The difference being I need to either take a blended meal with us or find some sort of baby food while out, although the low calories in this food make it less than ideal. We need to remember an extension set, meds, syringes and oxygen. A change of clothes. Pads and wipes. So in my head there needs to be an overwhelming benefit (for at least one of us) to justify the trip itself. 

This year I decided that unless Nate was feeling tip top it really wasn’t worth all the effort and planning.  Nate has slept through expensive trips too many times, and it grates on me to pay entry into places where there’s nothing appropriate for him to do. 

The big lad.

Venturing out as a wheelchair user ( or with one in our case) in this country can be pretty shitty. Nate uses all of his DLA mobility money to lease a wheelchair accessible vehicle or WAV ( note to readers- not a free car!). We are lucky in that both myself and Michael drive, but the lack of disabled spaces, and arseholes parking in them can be problematic. Toileting on days out and long drives is a huge issue. Yes the number of changing places toilets is increasing, but it’s doing so slowly and the majority of service stations and visitor attractions remain without one. At least we can get there I suppose... if you need to use public transport the situation can be much much worse. In our experience bus drivers are often unwilling to ask bus wanker passengers to move from disabled seats and will rather not stop than address the issue and let you on. I was very impressed in London a few years ago when a bus driver got off to explain to us he already had a wheelchair on the bus and had no more room, but that he had contacted the bus behind, they definitely had room, and would only be a few minutes. I’d like to think that level of consideration and/ or training is standard, but I know it probably isn’t. 

I’m still traumatised from my one return bus journey where I nearly tipped Nate’s chair over getting off the bus as the driver refused to put the ramp down, and that was after me having to ask, and then tell some older people to move a few seats down so I could get his chair where it needed to be. Teacher/ Mam “death stare” (as my daughter calls it) comes in handy. 

Railway stations are opening changing places toilets too in a nod to inclusion, but the trains themselves remain a stressful experience requiring a ramp to board only to find wheelchair areas packed full of luggage or passengers refusing to move from allocated seats for those with disabilities. Special assistance ( who are armed with the ramps to get you onto trains) often fail to turn up even when booked well in advance. I can’t log on to twitter without reading on a daily basis the upsetting experiences of people with reduced mobility on our railways. Aeroplanes remain inaccessible to the wheelchairs themselves and to fly you are required to leave your custom chair at the door and hope the baggage handling companies don’t lose or damage it, and remember that you actually need it to disembark. And make sure you don’t need the toilet! 

So this summer Nate started the holidays quietly, sleeping most of the day due to the heat. When the rains came my little Nate perked up and had some better days full of cheek, but it’s incredibly tricky to find things to do that suit a stroppy pre teen and a cheeky small boy who happens to have PMLD and can’t see. So some days I didn’t try. It’s not that we did nothing. We did. But I may or may not have been found around lunch time braless and unwashed on occasion. I even wore no make up *gasp* and left the house, which is massive for someone so pale she looks dug up. Seriously there’s healthier looking vampires ( and I don’t mean those sparkly twats from Twilight). “Fuck it” I thought, I’m not in competition with anyone, and with the overnight care situation remaining unresolved finding motivation to do anything was sometimes pretty hard. BUT I/we have managed to do the following:

- binge watched OITNB 

- caught up with friends 

- met up with a lovely ATRX family 

- binge watched Killjoys 

- spent time with my nieces 

- took Nate swimming

- escaped for a few days with the family 

- escaped the family for a night away with Michael

- started running again 

- drank wine 

- got all of my daughter’s school uniform sorted at the beginning of the holiday ( I deserve a bloody huge parenting award for this, first time ever). 

- read a few books ( husband threatened amazon ban, which was met by a suggested Arsenal ban, argument over)

- daughter has swam most days

- seen some lemurs 

- haircuts for the kids 

- played board games 

- annoyed my daughter

- took the daughter to Friendsfest 

- new slings for Nate

- watched my daughter in the wettest football tournament ever 

That’s in addition to the usual phone calls, meetings, hospital appointments, dog walks, and work work. 

And yes I’m probably more tired now than I was in July. 

Not shit again

Not to be confused with “not more shit again!!!!! Argh” ( a common shout in this house) . 

I need to share some happy not shit photos to brighten this really wet and miserable day. And no Nate still isn’t asleep, 28hrs and counting... 

It’s not shit playing with your fluffy bird ( and trying to eat it) 

Sly licks from your pal Fred aren’t shit either. 

It’s not shit supporting England ( although a bit shit when they get knocked out) 

Birthdays aren’t shit, although working out what to buy him is... 

Being musical isn’t shit, but he’s clearly thinking this is much better with my music therapist 

Walking the dog at the beach isn’t shit. 

And being outside in the sun certainly isn’t shit. 

On support

Our care package after many years is finally what I would call “fairly robust”. We have a personal budget for Nate and can use this to fund respite at a local provider and overnight care in the home. It is flexible which in real terms means we can ( in theory) alter the quantities of each type of support as required. Unfortunately the care company has lost staff and currently can’t fill all of his overnights. It had got to the stage where I was feeling a little bit guilty that we have all of this in place and that things were ticking along as smoothly as they can with a complex young man. So the fact our care package hit what can best be described as a snag seemed somewhat fair. 

How did we get here?

Accessing any version of support involves assessment. Shitloads of assesment. Carers assessment, core assessment, continuing care assessment. Repeatly answering the same depressing questions with the same depressing answers. The process began when Nate was very small, turned blue a lot, and had many many rides in ambulances. He wasn’t expected to live very long and the constant trips to hospital had us as a family hanging on by the tiniest of threads. Much of that time is a blur. The hospital welfare advisor suggested we call the children with disabilities team at social services and ask to be assessed. After much tactical avoidance ( by not calling me back) a lady arrived at my house, put her cigarette out outside my door, and came in to “assess” us. This lady informed us we couldn’t have any respite or help ( not that I knew the name for it back then) as this could only be provided when he turned 7 or 8. She shrugged when I told her he hasn’t expected to live that long and I was torn between a desire to poke her eyes out and having a good cry. The crying won. 

I cried and cried. I cried because I couldn’t cope with constantly monitoring all of his equipment. I cried because I loved him so much. I cried because I felt helpless as I watched his oxygen requirements edge upwards and him struggle to breathe on a regular basis. Eventually I cried at the right people. We were fortunate to have a fantastic local service led by portage which involved play groups, sensory play and Physio led sessions. All of this was just about keeping me sane and it was here I first heard that it was pretty obvious Nate met the criteria to access the local hospice. It was this that marked the first step in getting us the support we needed. Respite at the hospice was a lifeline. Getting to where we are now support wise is long, complicated and fairly novel-esque so this is probably enough information.

Over the last 2 weeks I have read with despair critical comments made by parents of young people and adults both with and without disabilities. The comments were mainly linked to the recent Panorama documentary “Fighting for my child”  found here: 

https://www.bbc.co.uk/iplayer/episode/b0bc2ch6/panorama-fighting-for-my-child

The comments included “well I’ve never have respite and I’ve managed” or “I wouldn’t let anyone else look after my child” and “it’s the parents’ responsibility why do they think someone else should help them out?” “ why should the grandmother be paid?” Now I know many parents who do a fantastic job looking after their young people who have disabilities without additional support, however they don’t use their personal situation as a way to bash other families. Every child is different. Family dynamics vary hugely. If you don’t need respite that’s great, if you don’t want it that’s fine too. If you’ve been knocked back because of the assessment process or decision making toolkit saying you don’t meet the criteria, technicalities, panel, or a lack of support by professionals doing the assessments I am enraged for you. If your care providers are shit let’s sort the bastards out and stick together 💪🏻 supporting each other on the way. 

If you are on your knees with your caring role you will need to muster up the energy to say the right things to the right people to ( hopefully) access anything at all. 

One thread on Facebook spiralled into a commentary that families get enough money handed to them and they should fund these things themselves. I’d like to point out DLA is for everyday living expenses and it doesn’t go as far as you think. To put this in perspective Nate’s whole monthly DLA would fund one night and part of a day in his current respite. Panorama went on to show a mother who lost her direct payments she had been using to employ her son’s grandmother. This triggered horror and indignation amongst the masses which demonstrated that the general public has no comprehension of the demands of caring for a complex child and that they seem to think this lady wouldn’t have her own bills to pay and life to fund, instead of horror that a vulnerable family had lost access to their only means of practical support. 

Some of these commentators- mainly people unfamiliar with caring for children and young people with complex needs ( and even some that are) went on to pass judgment on the situation below where a sibling has the full responsibility of an adult carer. 

https://bbc.in/2McJR7k

*pulls on ranty pants*

You don’t get to dismiss the need for respite and support in one breath then get to criticise families who put huge expectations on siblings in the next. In an ideal world siblings and young carers shouldn’t have that level of caring expected of them ( the article details the extreme end of young caring and I was horrified ). However the reality in this climate of cuts is massively different from the ideal and families survive and function whichever way they can. It’s easy for me to say I wouldn’t put that level of responsibility on my daughter when we have a support package in place. Equally you don’t get to cry over the poor children and their families and then support cuts to local services. Vital respite provision is being cut around the country and many families will suffer as a result. 

To come full circle this morning Nate is best described as “pure radge” having not slept a wink last night. He is very dystonic and sweating profusely. IF he does go to sleep today he will need his ventilator and oxygen, if not we can expect gelastic seizures and tonic episodes tonight. “Luckily” the care company sent their senior carer over as a stand in until they have recruited and trained new staff and can actually fulfil the package. Them being in last night is the only reason I can function today. The best way I can describe our caring role is for you to imagine a newborn’s demands, add in loads of meds and equipment, and then them never ever grow out of it. 

So yes I let other people look after my child. 

Rested Natie 

No sleep Natie 

 

Is it weird?

One of my son’s overnight care staff just asked me “is it weird having strangers in your house?”. So after our brief discussion I thought that I would explain a bit about my response on here, as I’m sure it’s something people who know us will have wondered about. 

We had known for a long time that we “qualified” via continuing care bingo and would be able to access overnight care, but in our old house we had nowhere to put a carer. The house layout also meant that we would hear Nate’s alarms and be woken anyway so accessing this level of help had to wait until we found a more suitable property ( thank you Simon).

Our carer was asking about this as for a long time we had only one carer trained (herself). Gradually another carer was introduced to the package and the package itself increased due to an increased need. Both carers know my son extremely well and are trained to cope with the very varied nights he has- asleep and ok ish, asleep with severe saturation drops which need a response by them, restless and upset, agitated with manic behaviour, self harm and extreme sweating, tonic episodes requiring resuscitation and gastro issues requiring frequent venting and drainage bag emptying. Is that all? Probably not. Anyway. Recently we have had new carers added to the package to cover illness, holidays and any additional or catch up days, which is what triggered the question. My answer was exceedingly brief:

 “ I don’t give a monkeys who’s wandering about”

The truth is after almost 6 years of sleep deprivation Scrooge McDuck could have turned up and as long as he had a up to date DBS and had completed all the relevant training I wouldn’t have turned him away. Though I may have asked him if he could count his money quietly the tight old git. After years and years on wards having serious discussions without a bra, wearing dubious PJs and yesterday’s socks, bumping into a carer into your kitchen with you hair aaal ower the shop it isn’t too bad. When you trust them to just laugh at your hangover as overnight care meant you got to go on the night out you usually miss out on, it isn’t too bad either. 

The thing that hit me most about actually sleeping is that I hadn’t realised how poorly my  brain had been functioning for so long. And now, after two years of a few guaranteed nights per week I can string full sentences together and make decisions I am confident in. What scares me greatly is that health professionals and community based services were looking to me to make life altering decisions about my son when I was so extremely tired and not thinking clearly. There’s a reason for the phrase “ go sleep on it”. Luckily (?) I’m an utter arse in lack of sleep mode (more so than normal I mean) so unlikely to concede to anything I felt wasn’t in Nate’s best interests. Or what I wanted for dinner. Or being right in an argument with my husband. You get the idea. 

Sleep deprivation isn’t pretty in me. Some people deal with it better that others. I am not one of those people. My Mam will attest to this. After a single disturbed night I am ratty and irritable. After two I am tearful and angry, so can you imagine how I was after nearly six years? Imagine how low my tolerance for bullshit gets. 

Sleep is vital to enable an individual to have positive relationships with those around them. Even without sleep carers will continue to function and carry on functioning until they literally drop- they have to you see because if they don’t who will? Sleep allows me to work. Sleep is so so good. I even dream now ( although often they are very shitty dreams) and I even once slept so unbelievably deeply that I didn’t move all night and actually woke up with a stiff back. Amazing! 

So to summarise IDGAF about people in my house because sleep is so, so good. 

Special sibling or young carer?

I won hypocrite of the year when I nominated my daughter for a local young carer award. What I envisaged was a nice little certificate to stick on her bedroom wall to show some recognition and my appreciation of all she does. I didn’t imagine for one minute that I would be canvassing for votes in a competition of who is “more worthy” of the award. The process itself was more than slightly horrific, being more a popularity contest than an acknowledgement of the different life she leads. 

As you know I find the idea of “young carers” pretty awful. That young people should have a caring role thrust upon them at an early age is unreasonable and just not natural. But in my head having to care for an adult is even more difficult than caring for a child ( as children need some amount of care anyway), and should we be pitting one against another, handing out awards and praising our kids for doing things they shouldn’t have to do? After all siblings are expected to help out with a brother or sister aren’t they? So because of all of this I like to refer to my daughter as a “special sibling” rather than a carer and I think what I was seeking through her nomination was a grudging respect that at 11 she’s not a total arse. 

My daughter was three when her brother entered this world in a dramatic fashion that would set a precedent for the years to come. She danced about to the delight of doctors and nurses and kept us endlessly amused through some incredibly dark times. As she became older she adopted the role of chief fetcher and carrier, always adaptable to the myriad of relatives and friends called upon to collect her and take her places. She took her teddy bear into school for comfort while her brother was ill in hospital or having operations. She automatically packs a bag of snacks and entertainment as I pack up her brother’s clothes and meds for hospital if he becomes ill. 

This is not the life I wanted for her. Not at all. But it’s our life and it’s not the norm. 

More recently she has become proactive in how she behaves towards illness and disability writing articles and speaking in front of her peers. Those who know her will admit her voice is a powerful one and I have no doubt she will continue to use this advocating for children with disabilities and their siblings. 

But this is not the life I wanted for her. Not at all. But it’s our life and it’s not the norm. 

The icky little truth in all of this is that she does help care for her brother whether I want her to or not. She may be ( I suppose) a young carer but I will not have her be an adult carer, as I’ve said before I want a different life for her. We’ve set things in motion with new respite provision that I hope will be the beginnings of our back up plan for if shit goes wrong, if we become ill or die, or you know just can’t do the caring thing any longer. You think superstars burn out? You ain’t seen nothing. Caring is back breaking, nerve destroying, mind fuckery of the highest order. The best comparison I can give you is imagine you’ve done a REALLY long run but before you’ve had a drink and a sit down you meet about ten people who all disagree with you about everything, three phones ring simultaneously and then you realise you should have rang for a prescription days ago but when you try the fucking phone line is permanently engaged. Then everything sets on fire but you just sit there and no one comes to help. 

Repeat every day forever until you die, or the person you care for does. 

Yes I know that all sounds quite depressing but throughout my blogs I have always aimed for honesty. It might be simply what the state of play is on a certain day at the time I put fingertip to phone, but it remains a truth nonetheless. 

It’s not all bad. It’s really not. However the major issues for each and every carer ( after the health needs of the caree) involve money and finding some sort of break from caring, and this situation is only getting worse. These pressures affect the ability to care and it’s false economy to not support carers themselves. Replacing the level of care we provide is a logistical and economic nightmare. It makes far more sense to put in place robust packages of care and support before family provided care breaks down. 

#paycarersalivingwage

#everycarerneedsabreak 

My rare disease day instagram challenge summary post

Now I’m not wanting to rehash old blog posts but if I’m honest I can’t actually be arsed to look back at what I’ve posted on previous rare disease days. What I can say is that I attempted this month to throw myself into Rare Disease UK’s Instagram challenge. The aim was to post a photo each day on a theme set by them. Some were difficult, some inappropriate for Nate and us, and other days life just got in the way and I completely forgot all about it.

It seems sensible then to share my insta posts with you on here. They will be screen shots not links as my instagram profile is private. It can be a “rare disease instagram challenge summary” if you like. Yes I’m going with that *quickly renames blog post*

Day 1- A big hello!

Day 3- What I’m up to today (being vented lots from my gastrostomy) 

Nate air swallows in addition to his stomach problems. This results in a huge amount of gas sitting inside of him which we can release by putting a syringe on the end of his extension tube and either drawing the air out, our pulling out the plunger and letting it all bubble through. 

Day 4- Selfie  Sunday 

Day 5- Motivation Monday 

Part of his syndrome means long episodes of being awake...

Day 6- Someone you admire 

Day 7- My night time routine 

Sleep system on ( I’ll try and escape later) 

A kiss from my dog 

Bedtime meds 


A rhythmic story 

Sats probe on my toe so my parents know if I stop breathing due to a seizure or apnoea. 

 

Humidifier, ventilator, sats monitor then oxygen on 


Mask on. Yeah right like I’m keeping this on! 


Overnight top up milk feed for administration through my jejunostomy port



Day 8- Something green 

Nate struggles to move food to the back of his throat for swallowing and so he received a gastrostomy. However Nate would retch and vomit up the formulas given through it due to reflux. We try (as much as possible) to give him normal blended food through his gastrostomy instead which he tolerates significantly better. 

Day 11- My favourite film 

Day 12- Something that makes me happy 

Day 13- My guilty pleasure ( me Rachel) 

Day 14- Love 

 

Day 15- Throwback Thursday 

Day 17- My rare disease 

Day 19- My favourite place- the high seas 



Day 20- What’s on my plate? 

Day 21- Something that represents me 

Day 26- Funky footwear 

Looking through these posts they are actually quite a good short short version of our rare disease lives. I say “our” as it impacts the whole family. 

I mean it’s not ALL doom and gloom which is why it’s lovely to share happy photos of Nate in my blog, and um Facebook, and Instagram, and sometimes Twitter too. Ok maybe I share a lot, but he’s been so poorly and wasn’t expected to still be here so I reckon I get a free pass on the oversharing thing.

The medical stuff in isolation can seem intimidating which is why people ( I’m looking at you medical and health professionals) need to see Nate as a whole person- his likes and dislikes, his cheeky personality, that his life has worth, has value. He is not solely someone with a rare disease, although that plays a huge part in his life, he is a young person with a complex set of needs who deserves to be supported by medics, the community and society in general. 

He is not a burden nor an expense. 

It’s worth having a chat to him, he can’t verbalise a reply but if you are lucky you will receive a huge roar and some gentle taps.