1578 days, that is how long I have loved you, and that isn’t including the time I grew you inside of me, but I assure you; I loved you just as much then as I do now. I have spent a total of 8 nights away from you, that’s only 0.5% of your life but from Saturday and until you start school, we will spend 28.5% of the week apart.
I would never have said a year ago, that I would be awake all night trying to comprehend these figures and telling myself that its going to be ok, that you will ok without me, that I will be ok without you.
I’ve spent almost 10 months thinking about how badly I need some time, ‘a break’ so to speak but I just wanted your dad to do his share because for the first four months through no fault of my own, you hated me. I could feel it and believe me, I didn’t like myself very much either at that point, but we got through it. The change in your routine blew everything apart, you struggled to eat, you lashed out and broke things, you cried, and I was beginning to think you didn’t know what sleep was but after 122 days; you slept. You slept in my arms after hitting me and yourself, but you slept, and it was a breakthrough or maybe a breakdown but you slowly got on board with your new routine and life got easier for both of us.
And here we are now, we have a good routine in place which is about to change once again and I don’t think either of us are ready for it but it has to happen. I never wanted you to have two ‘part-time’ parents, two houses or any of the other things that comes with separation. I wanted stability for you, I know how much you need that but somethings are beyond our control, but I tried and I want you to know that, I tried… for you.
What if you need me and I’m not there? What if you seek me for comfort in a strange new environment and I’m not there? I cant always be there but I wish I could and I needed you to know this. You maybe don’t understand this now but when you are older and can maybe read this you will.
You are without a doubt, the best thing that’s ever happened to me, my greatest achievement and the love of my life. I wouldn’t be the person I am today had I not had you and I am forever grateful for you and everything you are.
I have a little notebook that comes with me to all of williams meetings, I use this same notebook to jot down ideas of posts if something has happened or if I am feeling in a sharing mood. Quite often these ideas and thoughts don’t come into fruition so I thought I would put together a little catch up post of all the things I have yet to fill you in on.
So here is a little summary of what is to be included in this piece. * William’s birthday * School allocations * Nappy service * Impaction * Big Nan
Williams 4th Birthday!
How is my little 8.8lbs baby now a four year old?! I swear to god I have just blinked and missed a few years. I’m sure I am not the only parent who feels this way but it seems like time has flown by. I can’t be really surprised as we are dealing with school allocations and that doesn’t happen until they reach this age but holy shit he is now 4!!!
I got some funny looks and questions when people asked me how we would be celebrating his birthday. As many people know William struggles should his routine change drastically so my plan for his birthday was to ignore it… not completely but to protect the main structure of his routine. He woke up the morning of his birthday like any other Monday. His dad came to do the nursery run and the house remained as normal. No sign of birthday regalia at all. He ate his breakfast and went to nursery in his amazing birthday T Shirt (one of many 🥰) made by his Auntie Debs. We sent a Curly Caterpillar cake from Tesco for him and his friends to share in the sunshine room. No one tell M&S! #FREECUTHBERT 🐛 Whilst he was at nursery his dad (yes we are still coparenting) and I set up the living room with his gifts, card and balloons for him to come home to. I even cooked him his favorite tea which was a full roast dinner with all the trimmings! We had decided to celebrate after nursery so the change to his routine wouldn’t throw out his full day and cause his potential upset at nursery and although people thought it was mean, we found it actually worked really well for William and is something we will look at doing going forward. He came home, explored the living room, picked his favourite new toys and then ate his dinner. It was lovely to see him so calm.
Presents this year were amazing as our friends and family understand suitability and what William classes as high interest. I think the most amazing surprise was a handmade busy board from his uncle Jim. William immediate fell in love with all the fiddly bits and it has sat in the living room ever since for him to play with. Every year I usually make William a cake but this year I purchased a premade ‘Hey Duggee’ cake and as you can see he was quite happy with it and ate too many pieces to count 🍰🍰🍰🍰 although I made sure his dad and I got at least one piece each. We had a few nice doorstep visits from friends and family which really made the day special as we hadn’t seen them in such a long time. #covidsucks
I have written a lot about allocations in other posts and on our social media pages but I just wanted to include a little summary of what has happened so far…
February 15th – William was not considered for a special school place but may be considered during the moderation for his EHCP (highly unlikely)
March 2nd – Moderating should have taken place but didn’t 🙄
March 15th – Moderation went a head and no special school place given.
April 16th – Mainstream allocations released.
William did not get into his first choice of mainstream school… because why would he. They like to make things as hard as possible after all!
I now have to follow the appeal process which is due in on 21st May. This shouldn’t matter as I should be able to name our chosen school on his EHCP but the SENCO advised we should go ahead with appeal to cover all our bases. This doesn’t fill me with confidence when the system has let us down so many times already 😥
The Nappy Service
As I have mentioned previously the nappy service is available for children who have reached the age of four which meant that when William needed them they were unavailable to him until he turned 4. We were incredibly lucky because the amazing Essity stepped in and provided us with nappies until the service could be applied for. This saved us hundreds of pounds and lot of stress and we are so grateful for their help in what felt like a time we were forgotten about and fell into one of the many gaps in the system.
On Williams birthday his health visitor put the referral across and we now have the service in place, first delivery pending. The only issue I encountered once we were referred to this service was that we had been sent a certain nappy which was a type the service also use, ideally i wanted to remain on these as I knew the sizing and the fact they could hold up to Williams movements etc but apparently its a bit of a postcode lottery and because we are not in the East Riding we are not eligible for that brand 🙄 I’m not even sure why that matters but aparently it does.
The lady that called me was brilliant, she understood I was working and may have to dip in and out of the call. She went through many questions with me and it was actually a pleasure to speak to her but what really made things better for me about how I was feeling as a parent was this message…
Warning this is about poo! 💩
One thing that came to light recently as a follow on from the nappy service call was that William may have an impaction in his bowels, we are unsure if this is just nature or if it is due to the many things he eats which are not food. I mean it was only the other day his dad had to pull carpet fibres out of his bum 🤢 I’m so glad that was on one of his dads days 🤣
They believe his problems going to toilet are not just because of a lazy bowel but because there is an impaction which hasn’t cleared and everything else is adding to it or coming around it.
We have been given additional Movicol and Laxido to try and help it clear but, if it doesn’t i’m not sure what will happen next other than the fact we have to go back to the doctors to check what our options are.
I am trying not to google or freak out but this is me after all so check back in shortly and I may be weeping at my desk!
Return of The Big Nanna
184 days… 184 long days! 297 days in total… almost a quarter of Williams life without his Big Nanna.
I don’t know how soulmates work, I thought I did but their bond proves me wrong completely; she is 91 and he is 4 and they just light each other up. Big nan is suddenly young again and William is suddenly capable of interacting on a much higher level, he sees her and I mean really sees her. He finds comfort in his Big nanna just like I did in her when I was a child. To him, she is home, safety, love and lots of snacks.
She has had her vaccines and as lockdown is lifting, things can slowly get back to normal and our normal is seeing Big nanna every Sunday for snacks and snuggles.
I should be back on top of posting now so I will hopefully be back to post more regularly going forward. As always please remember to subscribe down below. Much Love M. x
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I don’t even know where to start! I don’t even know where to begin this post other than saying everything is fucked!
Yesterday was the legal deadline for allocations for special school, I had waited for what felt like an eternity already, the night before I barely slept and for the full day I felt sick and emotional… I chased them at 2pm to be told my caseworker would be calling me back once the allocations were ready. By 4:30 I was beside myself and asked Williams dad to chase as I didn’t want to keep pestering them (always a nice person and doesn’t get me anywhere!) Shocking horror! Our caseworker is on annual leave! Who the fuck takes annual leave at such a pivotal time in their office… Mark does! That’s who!
5:30 roles around and Elaine calls me….
William wasn’t on the list of allocations!
What? That cant be right… we were assured he was on the list. Elaine explains that as he doesn’t have an EHCP in place he would never have been on the list but we were told it didn’t matter. I pushed for months to get the process started earlier but due to Covid was told it wasn’t possible. I questioned if it would be an issue to be told it would not… ALL FUCKING LIES!
To say I wasn’t angry and devastated last night would be a huge understatement; I cried uncontrollably for about 3 hours, ranted at Williams dad, my mom and friends and smashed up some old furniture before taking the dog on what I can only describe as a walk in which I felt like I needed to punish the pavement. I needed to get out the feelings of despair so that I could face today as super mom because yesterday I felt exhausted… I felt too tired of all this hard work to get shit on, too tired of fighting to get what is best (but then I have always been a melodramatic kind of girl 🤣
I had to wait until today to speak to our senco; Lisa. She found out yesterday that William wasn’t discussed at applications and apparently had a meeting with her line manager and the head of the Hull SEND team Caroline Scott to discuss Williams options. It would have been fucking amazing if they could have called me first so I didn’t spend a full day waiting on something that wasn’t even going to happen!
His EHCP will be confirmed 3rd of March and there is an exceptionally slim chance they may allocate him a special school during that process but I am not holding my breath as I don’t think I believe a word of it anymore.
I have a meeting on 4th March to discuss this other meeting 🙄 and it looks like our options will be the following…
* Keep him in nursery until the term after he turns five – although he gets funding for nursery it still costs me a lot of money each month for his 2 days and paying full costs for 3 additional days is financially out of the question.
* Home school – we both work which would make this difficult but not impossible however it is the interaction he will miss out on which will not help him develop his communication skills.
* Mainstream with a watertight EHCP – I never wanted mainstream as the environment isn’t right for William and his mental health but this may be our only option until special school allocations next year. I would be able to name a set school on his EHCP and I have done research however I just don’t know if this is best.
I will keep you posted on any further developments.
As a parent this is something, we always ask ourselves until our child reaches an age in which their own decisions can be trusted. As a parent of a child with special needs not only do you question your choices but you over analyse every decision you are forced to make but what do you do when that spills out into your own life? When the simplest of decisions can be agonising because you try to predict every possible outcome which proves impossible and life just becomes too overwhelming. When every decision comes back to haunt you?
The pressures of being a single parent to child with additional needs is immense, every choice reflects upon your child from simple things like buying a different brand of chicken nuggets by mistake or choosing the wrong school. They both seem like such opposite ends of the scale, but both have a massive impact on Williams life and the responsibility of chicken nuggets is a big one on its own without the other factors.
What if they stop making his chicken nuggets, when is the right time to introduce new chicken nuggets? I am aware it sounds crazy, but I need to think of these things and try to find a solution before they happen.
Sometimes things do happen in which there was no way you could plan ahead for. Somethings happen and take you so much by surprise that you do not know how you will recover or if you ever will but in some circumstances you thrive.
How do you deal with those situations? I feel like I have become more guarded. I feel like I have to step up and become super mom, I feel like there is a constant battle to ensure William has the best support, the best family, the right environment and so on… I don’t know if that’s a natural part of being a parent, a single parent or a special needs parent but it’s exhausting. I am exhausted! It so hard to maintain a good balance between being mommy and being Marie and I feel like I am losing myself. It sounds daft because you don’t get a break from being a parent, it’s not a job; it’s a privilege. You don’t get sick days no matter how poorly you are or how much pain you are in, being a parent is just who you are on a fundamental level. With this pandemic its difficult to find the time to stop and take a breath. It’s not as if William can go to his Nanna and Grandad’s so that I can…🥁… have a nap. (not very rock and roll of me I know) It’s those kinds of things that I think we all took for granted, I don’t think any of us really appreciated how much we benefited from the everyday interactions we had with our family and friends.
Did you know there are around 1.8 million single parents in the UK – they make up nearly a quarter of families with dependent children. 1.62 million of these are women. I never really thought about this until it happened to us.
I could lie to you all and say we have had an easy ride of things recently but I think you probably know that’s not the case. This is a big adjustment period for me and more importantly for William.
My main focus is to continue to ensure William has a good solid routine in place which is pivotal to him. He is keeping me extremely busy as he seems to be struggling with this huge change in his life, bed times and mornings are now only ever with me and I don’t think he enjoys them very much. He fights and kicks me when I try to change his clothes, runs away from me and screams but we get it done.
We take the dog for nice little walks (well he walks us🐕🦺) which William seems to really enjoy even though he is in the comfort of his stroller and flat of refuses to do any walking. I’m tempted to stay at home and just tie the dog to the stroller and let him pull it arpund the street like a sled 🛷 but I think that would constitute as child cruelty or animal cruelty. Maybe neglect? So I best continue to go with them 🤣
We are eating healthier (as healthy as a boy thats half chicken nugget will eat anyway🍗) and trying to turn this into a positive thing for our lives and look to our future.
We’ve had meltdowns and shutdowns (from both of us😭) but we’ve come through it and these are getting less and less frequent on both parts. He is slowly adjusting to his new routine and I can now see the light at the end of the tunnel but its hard. Harder than it ever was before but we are doing ok. In fact we are more than ok, we aren’t just surviving like I thought we would. We are actually living thanks to our amazing support network of family and friends.
We can not thank everyone enough for reaching out to us, the doorstep visits, dropping off shopping and just being there for us. It means more than you all could ever know 😘 Much love M x
Today I want to talk about help and the places in which you expect it to come from but more importantly the places you would never expect. Today I want to talk about Essity and the amazing and generous help they have offered us but first I was to give you all a little background on what has led to today. This is by no means a sponsored post as Essity has kept all communication private but I feel they need to be mentioned as people find it so easy to brand big companies as heartless and greedy but today Essity has really helped put us out of the gap we found ourselves in in regards to the nappy service.
We have spoken previously about when it comes to help from the NHS, the council and other sources we often find ourselves in a gap; a void that you fall into when you miss the criteria that warrants help. It can be so frustrating that in our case Williams age prevents him from getting the help he needs or the help we need to keep him clean, healthy, and safe.
We have cried at receptionists, doctors, health visitors and many other health professionals because we have been denied access to the services we so desperately need.
There is a quote that occasionally does the rounds on the support group that we are part of, and it always really resonates with me.
A SPECIAL NEEDS PARENT FALLS DOWN A HOLE
Family/friend:“What hole?” Boss:“Oh that’s a shame. You can take the day off” Doctor:“Can you keep a diary of your experience in the hole?” CAMHS:“We will assess the size of the hole however it may take over 2 and a half years” Local Authority:“Sorry we don’t have enough money for a ladder” Charity:“Here is a form to fill in. This will get you on a waiting list for a ladder” Another special needs parent:“I’m here! I’m coming down there with you, I’ve been down here before and we can share my ladder”
We have had so much support from parents who have been in similar situations to our that it truly is inspirational. I would love to be able to help parents that start their own journeys which is one of the reasons we started our blog. Someone recently reached out to us on our twitter page to see if we could help their friend and I felt like we were part of something bigger. A group of parents who are bound together by being let down by a system that is set up to fail us. To make us feel like we can not help our children ourselves and need the extra support, its dangled in front of us like a carrot only to be pulled that little further away each time.
I just want to give you a little background information on Essity as I had to do a little research before writing this because I had never heard of them before. Essity is a leading global health company that originates in Sweden that develops, produces, and sells personal care items such as baby care, feminine care, incontinence products and medical solutions, plus so much more.
Essity´s vision is according to their website that they are dedicated to improving well-being through leading hygiene and health solutions.
They produce household names like Tena, Libero, Cushelle, Plenty, Bodyform, Cultimed and so many more across the globe As I have admitted I had never heard of Essity but I had heard of their brands, brands most families have in their cupboards including ourselves.
On the homepage on their website there is a quote ‘You want to make a difference every day. So do we.’ and usually when I see that kind of thing on a corporate website I would roll my eyes but they really mean it.
Today they have made the extraordinary offer to provide us with some suitable nappies for William until he is eligible for the nappy service from the NHS. This huge company that doesn’t know us from Adam has seen that we are in hole and thrown down that ladder that usually only other special needs parents carry around with them. This massive Swedish company has reached out to a little family from Hull and saved us. I know that may seem extreme as it is just nappies to most people but to us it a necessity and one that we may have been unable to source once William grows out of the standard sizes which will happen any day now and long before he turns four in 6 months.
There is really nothing we can do to repay such an amazing gesture other than to say thank you from all of us. Not just me, David and William but from our full family, from the staff at his nursery, our health visitor and every other professional to whom I have cried to about the unjust 4 year old rule.
Its no secret that I don’t like people. Actually that’s a lie. I like plenty of people just not starngers and it takes me a long time to be comfortable around anyone.
I have often spoken about Sarah but just in case some of you aren’t sure on who I am referring to… Sarah is our amazing health visitor. She has stayed with us for about 4 years since before William had even arrived. I have always maintained that Sarah is massively overworked and unpaid and I will stick to that. She has been an absolute godsend to us throughout our journey and when we moved house she promised she would stay with us…Lets fast-forward to present day and do you a little play back play
Lets fast forward to present day, here’s a little bit of a run down
Postman checks front garden for dog (its the cat he should be more affraid of 🐈)
Thump of mail hitting the mat triggers both me and William to dash for the door… He wants to eat it and I want to read it.
Its a win/win, I get the letters and he gets the Farmfoods leaflet.
I begin to shout for Dave…
This ever so nice letter from the community health team tells me that ‘as we new to the area’ we have been allocated a new health visitor and she will be coming to see us on said date.
As you can imagine we are confused so I call the number of the letter, I didn’t really hold out much hope as I had left a few messages for Sarah with their reception and never heard back. The answer and transfer me somewhere else… I explain that I have been in the area over a year now and we were told Sarah would be staying with us. I’m crying at this point because its such a big thig for us to have her in our corner; helping me fill out forms, turning up to meetings she isn’t invited to etc. The woman then asks me if William has additional needs.
Sarah has gone… she got a new job and isn’t a health visitor any more and her caseload has been deployed to others.
Needless to say we are devastated, a little hurt we weren’t told but mainly devastated.
We are worried that we wont get the same level of support from some who doesn’t know us. That we have to build that relationship back up and we don’t have the time to do that with William hopefully attending school next year. Are we going to have to repeat the last few years and have the same conversations?
I think we were lucky to keep Sarah as long as we did and I am so grateful for that and although for us this is a massive blow I really hope that in her new role she will be very happy and appreciated for all the hard work she puts in to everything.
Louise. That’s our new health visitor who we will be meeting a in a few weeks, I really hope she reads through all Williams notes and makes us feel at ease but for now we will just have to wait and see. Although she does get points for calling us after my distressed phone call… Maybe this isn’t going to as bad as we think…
Males inherit the X chromosome from their mothers, the Y from their fathers.
Williams results from the genetics testing came today and its a bit of a mouthful but… there was a variation from the normal pattern wirh interstitial hemixygous copy number gain Xp22.33. The test states there is additional genetic material.
Chromosome 22 is the second smallest human chromosome (21 is the smallest) including more than 51 million DNA sectors (they’re in pairs) and represent between 1.5 and 2% of the total DNA in cells.
There is no defined link between this and autism but there are a few case studies referring to it and those with learning difficulties but not enough research has been carried out. Its is classed medically as having uncertain clinical significance.
If it has come back as nothing detected that would have been shit but manageable.
If something would have been detected on his Y chromosome I wouldn’t have blamed Dave but I am sat here now blaming myself. After all the X chromosome came from me.
Have I done this to him? To us? The paediatrician will be booking in a consultation to discuss the results in more detail and establish if further investigations are needed but now I’m terrified of what they will say… will further investigation point the finger at me even more?
I just feel like I’m back at the beginning of our journey, like all the progress we’ve made in our acceptance and grieving over a child we thought we would have hasn’t mattered and I’m back to looking at him and crying because this could all be down to me.
I think I have been pretty vocal about how all appointments and referral seem to go round for us but I held out hope (in vain) for our most recent one, to the nappy service 🚼
Let me put a little context to this. William is 3 years old but developmentally under a year. Due to his physical age he is the highest available size of nappies. He is not currently able to be potty trained as he isn’t aware of when he needs to go toilet or if he is he is unable to communicate this as of yet.
William also suffers from a lazy bowel and it doesn’t always function and it should so mild laxatives are often needed to relieve him of discomfort as he can go over a week before naturally being able to pass a stool. As you can imagine the build up of waiting to go natural or the explosion of laxatives puts any nappy to the test but imagine this happening when there isn’t any that will fit him 🤢
William also displays sensory seeking behaviors and unfortunately this involves a fascination with his own faeces. The will result in him smearing the contents of his nappy over himself and his surroundings and on occasion he has put it in his mouth.
On a night we have had to put him in a onesie to stop him taking his clothes off and removing his nappy. Unfortunately for us the little Houdini has now learnt to remove a onesie as you can see below… thankfully he was busted in time and put back into his clothing jail.
We were worried as he gets bigger what will do and we were told that there is a nappy service in our area which provides children with special needs nappies in bigger sizes which is amazing. However nothing is ever that simple.
Let me start from the beginning…
Our GP sent a referral to the community nursing team
The community nursing team rejected this as he is under 4
NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
Our GP sent a referral to paediatric medicine
The sent it back to the GP with advice to refer to community nurses or the learning disability team
NO ONE NOTIFIED US AND OUR GP CLOSED THE REFERRAL
I chase the paediatric medicine team who told us what they had done
I call the GP and they tell me to call the community nursing team
I call them and they only know about the original referral and won’t accept another one as he is still under 4
I call the GP and have to tell them exactly what the paediatric medicine team have told me
SUDDENLY NOW I HAVE TOLD THEM WHAT HAS BEEN SAID THEY CAN SEE IT ON THEIR SYSTEM
They can not help as the person who deals with referral is off (I don’t think they’ve ever been in the office when I have called) but a manager of the surgery will call me back
Kerry calls me and has no idea why she is calling me. She thinks it’s regarding his autism assessment.
I HAVE TO REPEAT THE FULL CYCLE AGAIN WHILST SHE REPEATEDLY TELLS ME SHE DOESN’T KNOW WHATS HAPPENED
She is going to call our health visitor and William’s own paediatrician for help and call me back
She calls back, she has left word for the health visitor but doesn’t know if she can help. She has called CAMHS (children and adult mental health services) and they can not help. She has called learning disabilities team and they can not help and she doesn’t know what to do.
WELL KAREN (SHE IS NOW A KAREN, I HAVE DECIDED) NEITHER DO I AND IT’S NOT MY JOB TO KNOW!
She will send me some links to places that can help.
DO YOU KNOW WHAT SHE SENT ME… A LINK TO A CHARITY SHOP AND A SITE TO SUPPORT ADULTS WITH AUTISM. SO FUCKING HELPFUL!
I found it hard not to cry or be angry whilst on the phone with Kerry/Karen and I’m sure she could hear the break in my voice when I asked her ‘what are we supposed to do now?’
And that is the question, what do we do now?
We can’t be the first parents who have come across this, we can’t be the first to be in this situation. What happens when you fall into the gap? Do we just stay there for 8 months and have a bare bottomed child or tie a carrier bag to his waist?
If I failed to change and clean his bum for him when he was physically under a year old then I would have been classed as neglectful but what about now? He isnt physically under year but developmentally he is still in the same place. Am I being neglectful? Or are the services in place being neglectful by allowing this?
People often struggle to differentiate between a child with autism and a child who is being naughty.
As a parent who suffers with anxiety it is very difficult to go to certain places and deal with other people who don’t know William like we do.
Something as simple as a journey on a bus can set me into a tailspin, a small journey can lead to an argument due to the fact other passengers look at William as see what they deem as an ablebodied 3 year old in stroller taking up a space they feel someone else needs more. Not all disabilities are visible and what give you the right to assume!
A trip to a supermarket can lead to a full meltdown due to the hustle and bustle of different people, a different environment, bright lights and loud noises. One the rare occasions he will walk, he will often end up laid on floor and go floppy because he can’t handle the stimulation and lack of familiar surroundings and comfort. This is not a toddler having a tantrum because he can’t get sweets or doesn’t want to walk, its because he is in pain.
When we go to a restaurant, cafe or bar he will beeline for any food he can see, we will stop him before he takes it but it can lead to awkward conversations, dirty looks and whispered remarks. This isn’t because he isn’t fed at home or because he is rude. This is because food is such a high motivator for him and that the fact it doesn’t belong to him doesn’t even register.
I shouldn’t have to apologise for my son for being himself but I find it becomes a more frequent occurrence as time goes on. I shouldn’t have to explain why he is the way he is, there should be a wider understanding of the autism spectrum leading to acceptance.
I truly believe that autism awareness and understanding should be educated in schools so that future generations don’t make the same mistakes and assumptions. There are no definitive figures of those with autism as no record or register is kept but based on recent surveys 1 out of 100 has autism.
Think of the children in your child’s year at school, think of the children who you went to school with. I wish I had been more aware, more educated and a better person.
I want that for the future, for children like William and for parents like us who often feel we should apologise on behalf of our son when maybe, just maybe they should be apologising to us for their small mindedness.