I Have seen this poem shared on Facebook several times throughout the last year but it didn’t resonate as much as it does today. You may remember the ‘Welcome to Holland’ poem I shared which in the beginning really touched me. Check that out here.
Unfortunately I haven’t been able to trace its origin but whomever wrote it, Thank you! I needed to read something like this right now and am so grateful for the Mom who shared it again 😘
I see you taking your kid to therapy while your friends take their kids to football or ballet.
I see you sneak out of the conversation when all your friends boast about achievements and exam notes.
I see you juggle work, events and meetings.
I see you sitting on the computer for hours investigating what your child needs.
I see you make a face when people complain about what looks like nonsense.
I see you disappear little by little but you keep going beyond for your family.
I see you pull strength from weakness with a force you didn’t even dream you had.
I see you showing respect for teachers, therapists and medical professionals who help your child and help you.
Watching you wake up early in the morning to do it all again after another chaotic night.
I see you when you’re on the edge of the precipice struggling to live.
I know you feel invisible, like no one notices. But I want you to know that I see you.
I see you push forward always. I see you choose to do everything you can to give your child the best care at home, school, therapy and the doctors. What you do matters. It’s worth the struggle.
On those days when you wonder if you can make it one more minute, I want you to know I see you.
I want you to know that you are beautiful. I want you to know it’s worth it. I want you to know that you are not alone. I want you to know that love is the most important thing, and that you are the best at it.
And in those days when you see an improvement, those moments when hard work has its reward, and you can taste success, I’ll see you then too. And I’m proud of you.
As a parent of a child with special needs I often feel judged, judged by those who are in positions to support us or judged by those who don’t understand. It shouldn’t matter, but it does. Peoples opinions still effect all of us whether we are willing to admit it or not.
I dread people coming to my house, not just because of the Covid situation but because it makes me uncomfortable. We recently had an appointment with ‘the sleep team’ and a woman called Rachel came to our house. I’m immediately on edge because she is coming in my house, what if she sits there judging us? Don’t get me wrong, my house isn’t unclean but it is most definitely lived in and you are bound to step/sit on some abandoned snack or cockle over on half an egg shaped toy but its home, its where we make memories and I personally wouldn’t want it any other way.
She comes in wearing her full PPE gear and sits on the floor. Who does that in a house with both a cat and a dog? Even I don’t sit on the floor… it looks clean and gets hoovered all the time, but you always end up with a nice coating of ginger fur anyway.
I’m not sure if I have mellowed as time has gone by but I really liked this woman who is now in a list of recent professionals who have managed to put me at ease in a very short space of time. Maybe I’m just not as neurotic as I once was.
I have done so much research about sleep regression, sleep avoidance, ways to assist in sleep, the works to be honest, it started maybe a year ago when William decided he no longer wanted to seep like a log. A little context is maybe needed here… William has always slept through the night, right from the moment we brought him home from the hospital. We used to give him a little poke to make sure he was ok because he was so still. Oh, how I used to brag about the fact he was an amazing sleeper! This is my payment for being a smug bitch.
Rachel spoke to us about Williams routines, his behaviours at bedtime and through the night and asked us about steps we have put in place to try and ensure he gets some sleep.
William struggles to get to sleep, he struggles to stay asleep and seems to only need between four and five hours a night
There is a huge list of things we have tried and failed. Hours of research and expensive bits and pieces to help him settle but to no avail.
What really made my day is that Rachel said we were doing everything right ☺ us… who feel so inadequate at times doing it right. She said we had a good team between the two of and seem to communicate well and work together… I almost fell over, but it did really make my day.
The only downside to this is that she couldn’t offer any further advice however she is going to speak to the KIDS charity and see if they can offer anything further. This to me indicates that medication will be the next step and I don’t think I want that for my child, but we will have to cross that bridge when we get to it.
She is coming back on the 8th so I will keep you updated with any developments
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.
First thing is first… Today is my birthday, I am officially 21 31. I don’t usually take the day off for my birthday however we had another PCP meeting so I thought Why not? I am currently sat in my front garden on my old sofa in the sunshine (yes we are those neighbours but they are getting collected this week so its not that bad)
The meeting attendees were myself & David, Jenny who is the who is part of the SLD outreach team for tweendykes, louise; our new health visitor, Lisa the early yars SENCO & Courtney who is acting manager at our nursery.
Just like the last PCP meeting this was to discuss and review Williams support plan to sed away for his EHCP. This will be finalised within a week for us to sign and agree ready to be sent off.
What we did find out is the next steps which is interesting….
It will first go to moderators who will asses the plan for 6 weeks(Who can decline it 😣)
Then it will be passed to educational psychologists who will carry out further assessments and potentially add to the plan
Between weeks 14-16 it will go back to the moderators
Then we will be sent a draft EHCP which we will have for 2 weeks to check and request any changes. At this point we can name a school. This will be banded at *Intensive *Severe *High or *Support
Then finally it will go back to the moderators who put all children wanting a place at a special school onto a big list and allocate places based on need and what they feel is the best fit for each child and their requirements. We should find out by the end of January 2021, which isn’t that far away when you think about it.
William isn’t automatically guaranteed to be entitled to a place in a special school so Lisa has advised us to look into the facilities the local mainstream schools have available in our area to have in mind as a back up so we will be reaching out to those shortly and will keep you posted about our findings. This for us would be worst case scenario as we know based on his GDD that a mainstream school is not the right environment for him to be able to continue to grow and learn so hopefully it wont come to that.
We have a TAF meeting due end of November/December to look at Williams funding in which we will also discuss the progress of the ECHP.
Anyway I’m off to eat copious amounts of cake and re-watch Harry Potter for the millionth time, you cant beat a good birthday tradition 🎂
Its a Monday and when I was office based it used to be my favourite day of the week but not anymore, today feel like the most Monday-ist Monday ever! In the words of that Geldof prick and school shooter Brenda Spencer… ‘I don’t like Mondays.’
Today me got to meet our new health visitor; Louise. we all know how much we rated Sarah so she does have a lot to live up to. Louise has been the health visitor for our area for 15 years which is a long time for a health visitor to remain in the profession.
She turned up in full PPE as you would expect in todays current climate, Mask, goggles, gloves and full length plastic apron. Brilliant first impression… the neighbours must think we either stink or are getting fumigated 🦨🤣
She introduced herself and immediately jumped into questions about William, I must say the sceptic in me immediately though she hadn’t read his notes but she was also referring to him and wanted a thorough picture for herself of his capabilities and behaviours.
She confirmed she will be attending next Mondays meeting about his EHCP just like Sarah used to despite not receiving the official invitation.
Before I could even ask her about the Nappy Service she told me she had looked into our request and there was no leeway with him being under four, again this impressed me that she had looked into things that we had hit brick walls with without having to be asked. This one was on my little things I had written down during the months I was unable to speak with Sarah.
She has decided to put us through to a sleep specialist to help us hopefully get William to sleep easier and keep him asleep, this will involve lots of assessments and advice before potentially leading to medication such as melatonin. Melatonin will help most kids fall to sleep but not all… The problem is some parents believe it will help a child who is procrastinating going to bed, stop a child waking up early or having nightmares but that isn’t the case. Melatonin is usually a natural hormone that our brains release in order to help us fall to sleep. Melatonin supplements are available easily online but they are NOT regulated and may do more harm than good. If you are considering Melatonin please ensure you speak to a professional before buying something that you cant be 100% sure of what’s in it. There are concerns that because melatonin is a hormone that it may effect your child’s development when they hit puberty and it is something we will need to consider deeply if we reach that stage.
I asked her to refer us to Wheelchair services so we can get a specialised buggy but she wasn’t sure if she was able to do so. she said she would be in touch about it and… within 2 hours of her leaving our house she was on the phone advising us of who we need to speak to as only two organisations can make that referral, Occupational health and Physiotherapy but William doesn’t need any of these 😕 Its not that he can’t walk. Far from it. Its when he does walk he will drop to the floor in a floppy state no matter where he is including roads, its the fact he has no danger awareness and a buggy at times he goes floppy or has a meltdown would prevent him from getting hurt. I’ve lost count of the amount of time Dave has had to stop cars because or child is laid in the street. 🚗 we have spoken to our G.P surgery and have a telephone consultation booked next week for the doctor to decide if its appropriate for him to refer us 🙄
I’m not sure if we mentioned the questionnaires that are sent out prior to a child’s development check up but they have always been brutal to us. They focus on what children should be doing for their age group and as we are all aware William isn’t at his age group so it was a lot of negatives for us. These are called the Ages & stages questionnaires and unless I am mistaken are to identify children who may have developmental disabilities. He will now be assessed based on the Nelson scale which focuses on the age he is at for each area rather than where he should be for his actual age. I think this will be much easier to help us understand the next steps in his development. We see little improvements and new achievements but we find that the standard ages and stages just doesn’t celebrate or include those and will continue to score zeros despite developing slowly at his own pace.
On the plus she has weighed and measured him and he is in the 25th percentile which is where he has been all along. This made me feel so much better about his eating habits as I do worry he may be underweight but apparently he is perfectly healthy… which is always good to hear.
I think because Sarah was all we had know for 4 years we held her on a pedestal and it was unfair to presume Louise would be inferior to her. She has already made a brilliant first impression but I guess I’m just skeptical due to the amount of agencies who have failed to uphold their promises but Louise seems really promising and honest and I guess that’s all we can ask for. She will only be with us until William starts school in a years time in which the school support will take over… if we get in but thats a whole other worry for another day.
I wanted to share with you some details from two articles published by The Independent and Hull Live about Ryan Addison.
Being from Hull myself the story automatically caught my attention for some pretty disturbing reasons. Firstly the article on Hull Live hold the title ‘Innocent Hull man locked up with criminals for years because of his autism’ When Ryan was 17 years old, verging on adulthood he showed signs of concerning behaviour which cumulated in him trying to take his own life. He was then voluntarily detained in hospital for help with his behaviour. With him being 17 at the time he would not have been able to give permission for this himself so the mental health professionals must have asked him mother and father for consent on his behalf.
Ryan’s mom was pleased and thought after some treatment she would get her boy back home, a few weeks maximum she thought… That was 14 years ago.
Sadly Ryan was wrong diagnosed as suffering with Schizophrenia which was only re-evaluated 12 years after the initial diagnosis. He did not have Schizophrenia but was actually autistic. For those 12 years with an incorrect diagnosis Ryan was treated with drugs for something he did not have. Ryan has been so heavily medicated he lost 14 teeth and had to be fitted with denture which has since been misplaced.
After 10 years Ryan was moved to the Humber Centre for Forensic Psychiatry which according to the NHS UK site provides medium and low security for patients suffering from mental disorders, learning disabilities and personality disorders; offering assessment, treatment and rehabilitation.
Within 4 months of arriving at The Humber Centre Ryan was put into long-term segregation and between October 2017 and February 2018 he was not permitted to have any contact with the outside world after showing aggressive behaviour and violence. The department of health state in their section of the right to have visitors when detained under the mental health act the below…
You can have visitors but different wards have different rules about times etc.
Your visitors can be very important in giving you support.
The Code of Practice also states
All patients have the right to maintain contact with, and be visited by, anyone they wish to see, subject to carefully limited exceptions. The value of visits in maintaining links with family and community networks is recognised as a key element in a patient’s care, treatment and recovery. Article 8 of the European Convention on Human Rights (ECHR) protects the right to a family life. In particular, every effort should be made to support parents to support their children. Patients should be able to see all their visitors in private, including in their own bedroom if the patient wishes.
Visits should be encouraged and made as comfortable and easy as possible for the visitor and the patient. Reasonable and flexible visiting times, access to refreshments and pleasant surroundings will all contribute to a sense of respect for the patient’s entitlement to be visited
In addition to visits, every effort should be made to assist the patient, where appropriate, to maintain contact with relatives, friends and advocates in other ways. It is good practice for patients to be placed in a hospital as close as reasonably practicable to their families, and patients should have readily accessible and appropriate daytime telephone and internet facilities (see chapter 8). Where a patient is placed out of area it is good practice to consider the needs of family and carers who have to travel in order to visit
There are circumstances where hospital managers may restrict visitors, refuse them entry or require them to leave. Managers should have a policy on the circumstances in which visits to patients may be restricted, to which both clinical staff and patients may refer, which should be clearly displayed on the ward.
There are two principal grounds which could justify the restriction or exclusion of a visitor: clinical grounds and security grounds.
The decision to prohibit a visit by any person whom the patient has requested to visit or has agreed to see should be regarded as a serious interference with the rights of the patient and a blanket restriction may be considered a breach of their article 8 rights. There may be circumstances when a visitor has to be excluded, but these instances should be exceptional and any decision should be taken only after other means to deal with the problem have been considered and (where appropriate) tried. Any such decision should be fully documented and include the reasons for the exclusion, and it should be made available for independent scrutiny by the CQC or service commissioner, and explained to the patient. Hospital managers should review the effect on the patient of any decision to restrict visits. These policies should be risk-based and not impose blanket restrictions, eg no visitors for the first four weeks after admission
From time to time, the patient’s responsible clinician may decide, after assessment and discussion with the multi-disciplinary team, that some visits could be detrimental to the safety or wellbeing of the patient, the visitor, other patients or staff on the ward. In these circumstances, the responsible clinician may make special arrangements for the visit, impose reasonable conditions or if necessary exclude the visitor. In any of these cases, the reasons for the restriction should be recorded and explained to the patient and the visitor, both orally and in writing (subject to the normal considerations of patient confidentiality). Wherever possible, 24-hour notice should be given of this decision.
The behaviour of a particular visitor may be disruptive, or may have been disruptive in the past, to the degree that exclusion from the hospital is necessary as a last resort. Examples of such behaviour include: • incitement to abscond • smuggling of illicit drugs or alcohol into the hospital or unit • transfer of potential weapons • unacceptable aggression, and • attempts by members of the media to gain unauthorised access.
A decision to exclude a visitor on the grounds of their behaviour should be fully documented and explained to the patient orally and in writing. Where possible and appropriate, the reason for the decision should be communicated to the person being excluded (subject to the normal considerations of patient confidentiality and any overriding security concerns).
The hospital manager has a responsibility to regularly monitor the excluded visitors list and keep all parties informed which was according the articles was not adhered to so he or she should be facing severe disciplinary action and potentially dismissal.
I want to add here that it wasn’t until 2018 that Ryan’s mom said it was clear he should not be locked up. Now I am not sure if the article is paraphrasing but misdiagnosis or not, Ryan’s behaviour was still very challenging; It took 9 staff to restrain him when he became aggressive which did result in Ryan suffering some injuries which shouldn’t have happened however if he was aggressive then there would be the need to restrain him from hurting himself or others in the facility.
It is officially stated that detaining those with autism diagnosis is not effective however figures do show that the number of those detained in facilities has more than doubled within 5 years which is a terrifying jump in numbers.
Sharon claims that she was not able to physically touch her son, take up to date photos of him or even see his room. she states she called the centre twice a day; once in a morning and once at night to see how her son was doing but in October 2019 she was unable to reach the ward despite multiple attempts. A member of staff at the facility had blocked Sharon’s number and when she dialled from her husbands phone that was blocked too. It was only then that she made an official complaint but no one would admit to blocking their calls and apparently it was untraceable due to the number of staff on duty but senior managers at the facility have given a stern warning to all staff that such behaviour is not acceptable! (apparently that needs spelling out) Thus meant that no one could be held accountable for such a heinous act and most probably still work there with vulnerable people and their families.
In a statement Humber Teaching Foundation Trust said: “We are in complete agreement with Mrs Clarke that Ryan’s current hospital placement is an inappropriate environment to meet Ryan’s needs. We are pleased that, following positive meetings with commissioners last week, together we are now taking the steps required to discharge Ryan into a community placement that will be better placed meet his needs. We understand that Ryan and his family feel that this process has taken a longer than expected, however, it is important that we find the right placement that meets Ryan’s complex needs and enables him to progress further with his recovery”
I’m a glass half empty kind of person and I do find it odd that it has taken so long for the failures around Ryan’s care to be addressed not only by his family but also the Clinical Commissioning Group and the NHS. Did Ryan just slip through the gaps? or was he forgotten about because it was more convenient for all parties?
The Government has now agreed a new 62 million pound fund to help local councils tailor bespoke packages to suit the needs of adults like Ryan however Covid-19 is more than likely to have an impact on this due to the amount council have spent during this pandemic.
His mom thinks that when he is released he will become more like the young boy she remembers and will truly blossom however that was a long time ago but I sincerely hope that is true for him. He has had a huge portion of his life taken away and although he can not get back the years he has lost I really hope he can have many fulfilled ones in the future. I will update about his release when possible.
Check out the original article from The Independent here And the Hull live article here
As many of you will be aware we have recently been on a big family holiday for the first time in 2 years and as you can imagine things with William have changed greatly since our last vacation. I love getting together with our family but as anyone will be aware it can be stressful; throw an autistic child in the mix and it can be nuclear which meant my stress levels peaked before we had even left the house. ‘What can he cope without?’ ‘What if he smears whilst we are there?’ ‘What if he cant handle it being around so many people?’
I know it sounds a little crazy as my mum and dad were there and he loves them both so much and my dad will babysit when I was office based, my sister and niece were there and he loves his Auntie Nellen (or H to everyone else, the letter H doesn’t exist in Kingston upon Ull. ⚙Yes the cog used to be our logo 🙄) Big nanna came for the first time and we all know what an amazing bond they have and finally his Uncle Jim and lets face it unless he has to change a nappy he is amazing with him (if we ignore the fact he’s banged Williams head more times than Rick Allen has banged his drums🥁)
Here are some of my favourite pictures from the week 🥰🥰🥰
Picture 1 – We were delighted to be able to borrow a freeloader carrier which personally is amazing for parents of children with special needs to be able to safely carry them to areas you would not be able to get to with a stroller or wheelchair. Unlike a baby carrier it has a seat on an reinforced hinge which means that when your child sits on it the straps are not brutally cutting into your flesh due to the weight of your lump child. Its a big expense as they are imported from America but I would honestly say they are definitely worth it and we will eventually be looking at getting one of our own 💸💸💸 Click here to check them out
Picture 2 – We’ve discussed on previous posts about Williams refusal to walk and lack of awareness when it comes to roads. Here is a prime example. We had walked for less than 2 minutes and William collapsed in the road. He makes himself go floppy so he is impossible to grab onto and will just lay wherever he has fallen an believe me he is more slippery than a bar of soap and his limbs just slide through your hands. 🧼
Picture 3 – William love bubbles but hates bath time 🛁 so after a traumatic bath which was much needed as he decided to sit in the stream we left all the bubbles in the tub for him to lay and play in. Dave took so many photos and Big Nanna sat in a chair watching him have the time of his life and I’m so glad she got to see that as she had witnessed a meltdown at the beginning of the week which I will talk about later.
Picture 4 – Dave loves the walks up in the dales and has climbed the peaks and everything… Me; no so much. My version of exercise is walking to fridge or picking up my phone to order on just eat. 🍕 We decided to spend one of our days in our little 3 person bubble and went to explore the village. Whilst sat with his dad on the bank of a deep stream William lost a one of his Wellies over the edge and Dave had to go in and fetch it… as you can see no shits were given by William at all and he is actually calmly sat on grass which is a big improvement.
Picture 5 – Dave referred to this table as a 70’s party table due to its mirrored surface. William had his first little holiday romance… with himself. It’s like he discovered his reflection for the first time and spent a good amount of his time kissing his reflection 😘 William doesn’t quite understand what a kiss is and his version is coming at your mouth with his mouth open and there is always a risk you will get bitten but its worth it, I would take a million bites for one kiss.
Picture 6 – He loved the streams that ran though the village and we went in for splashes at every opportunity. We learnt a few things on these mini adventures. My wellies had holes in (they were about 10 years old), William loves the running water and decided to wade as far as we would let him, to the point the water was over his wellies so I wasn’t the only one with wet feet and finally that he will literally just sit anywhere including in said stream 😂 It made the short walk back to cottage much longer, wetter and colder.
William had one meltdown whilst we were away and unfortunately it was the worst we have experienced so far. He went red and started screaming and repeatedly hitting himself in the face with both his hands clenched together 😢 It hurts me to see him so distressed however I now know not to try and restrain him as it makes it much worse. Big nanna has never experienced a full meltdown and it really frightened her. I could see it in her eyes and asking me to stop him hitting himself and asking me what was wrong and to be honest I couldn’t work it out. He has been to toilet, he had eaten well and nothing he hadn’t eaten before, he had his favourite toys and Hey Duggee was on the TV. I don’t know if it was the new environment or he just wasn’t feeling himself but it really frightened her which upset me alot.
I think being told about the way someone reacts due to their additional needs is very different from seeing it first hand. Autism in a spectrum which is so vast and complicated it is difficult for people to understand, even those who are close to someone with ASD don’t fully understand the possibilities or the limitiations and it can make explaining them exhausting 🥱
The journey home was uneventful as you can see from the above picture the journey home was uneventful, either that or they just didn’t think much to mine and H’s music choices 🎶
William missed his friends back home and Rusty which was evident because as soon as he saw each of them he was so happy. He practically ran straight to our next door neighbours for cuddles, my pets and child are all starting to think they live there 😂 but in all seriousness I actually love it. He has an amazing bond with the full family and I trust the girls to take him to park and be safe with him and it takes alot for me let anyone do that. He was sat on the roundabout in park and quietly ate his packed lunch as it went round when some older kids (secondary school) asked one of the girls to make him move and she told them no, he has problems and he’s happy where he is and they just left. She has more balls than I think I would have done.
One of our other neighbours got back from their holidays today and as you can see William missed them that much he sat in their car and made himself comfortable. GTA eat your heart out 🚗