Posted in Appointments

Transition meeting Pt. 1

I think terrified is the best way to describe how I am feeling about William transitioning into ab school setting from his nursery. The fear keeps me awake at night as I toss and turn thinking about how he will handle a new environment and different levels of support. When I think that his days at his amazing nursery are numbered it genuinely makes my sad.

This was William just over 2 years ago on his first day at nursery, he looks so young and baby faced. He loved it whilst I sat at home and cried. I didn’t think anyone could look after my child as well as I could but I was wrong… Over the last 2 years they have helped William and myself in more ways that I could have ever anticipated, they helped me understand some of his educational needs and pushed us through the right channels for support, funding and diagnosis. Thinking that his last days are slowly coming upon us brings tears to my eye, not a single tear or quiet tears but messy heartbroken sobs. I know it is almost time for him to continue on his educational journey but i’m not quite ready to say goodbye to them 😭😭😭

Today was part one of the transition meetings to get William into the right school with the right support. Unfortunately we still haven’t received his draft EHCP however we are aware that he has been banded as intensive for the level of support he needs which is the top level. Below are the definition and school needs for children branded due to Speech, Language and Communication difficulties as Intensive or severe provided by Hull Local Offer. William easily fits into the ‘Intensive’ category however after discussing with his SENCO; Lisa, he would standardly have been placed in ‘severe’ had he have been going to a specialised school as his level of support would have been less within that environment.

LevelDescriptorsCurriculum needs
SevereVery severe expressive and/or receptive language difficulties of a specific nature, which are significantly impacting on progress and social, emotional, and behavioural development. Child/young person of broadly average ability.
or
child/young person with a very severe communication disorder, which is significantly impacting on progress and social, emotional and behavioural development.
or
child/young person’s ability to receive communication is severely limited due to a language disorder or a profound difficulty in interpersonal interaction.   Child/young person may have emerging mental health difficulties and/or experience a high level of anxiety in most school situations.
Intensive programmes to develop understanding of language, expressive language, speech intelligibility and/or social communication skills. Intensive programmes to help the child/young person develop alternative or augmentative means of communication to a level commensurate with level of ability. Differentiated programmes of study to facilitate interaction with the curriculum either by oral, signing, symbol or written systems. Programmes of support to enable the child/young person to become competent users of communication aids / technology.  
IntensiveProfound speech, language and communication needs as a result of which a child at school entry age is only likely to function below the 12-month level in relation to these skills.
and
child/young person uses primitive gestures, a few signs/symbols and/or has almost no spoken language.
and
child/young person is unable to form words or make adequate use of augmentative systems of communication.
and
child/young person has severe limitations in the expression of intentional communication. or child/young person has significant physical difficulties, with less cognitive impairment, which require voice output communication aids.   The child/young person may have an accumulation of layered needs, which could include mental health, relationships, behavioural, physical, medical, sensory, communication & cognitive needs.
Child/young person needs very early (infant) developmental programmes in relation to language/communication. Child/young person requires intensive training to acquire the limited use of means of alternative communication systems (e.g., signs/symbols systems). Child/young person requires intensive programmes to develop pre-lingual articulatory skills (i.e., formation of sounds in words). Child/young person needs programmes of work which recognises their high level of dependency in relation to language and communication. Intensive programmes of support to enable the child/young person to become competent users of communication aids / technology.  

The guest stars in todays transition meeting
* Lisa – SENCO
* Jenny – Specialised school representative
* Zara – Williams 1:1 support from nursery
* Chris – Head of chosen mainstream school
* Me – Mom, stress head, emotional wreck etc

For those who has tuned in to my blog before will notice Val isn’t listed as Williams 1:1 support, sadly Val decided to take partial retirement which means she no longer works Williams days. This did make me very sad as Val is amazing with William (Please feel free to remember when I pitched a fit because he left Linda to go to Val 🤣 I soon ate my words about that one) however William loves Zara and she has been in the sunshine room with him all along so i am quite happy with the change and happy for val to have some well deserved rest.

I got to meet the head of our chosen mainstream school today and she seems very similar to the head teacher who was in place when I attentended in the 90’s. She asked me to tell her about William, nothing specific but my view on what he is like as a child. I got a little emotional explaining how loving he is in his own ways but it was nice to be asked, not about his development or what he can and cant do but about how he is as my son.

Our chosen mainstream has two classes for Williams age group with each having 30 children, he is currently in a setting of only 8 kids so the transition may be a big shock for him, the plan is currently to aim to start this by the autumn term which is October/November rather than the standard September term. It will be easier for William to adapt to his new setting if he is eased into it slowly, starting out with shorter days or weeks which are to be agreed once his EHCP is in place. When this finally does come through I can name our chosen school with the view of a specialised setting in the future (ideally the following year🙏🏻)
On top of the EHCP naming I am also following the standardised appeal process to cover all bases to ensure we don’t have another crushing disappointment like we did when it came to specialised school allocations but i’m not holding my breath. Any parent of a child with special needs will tell you how fucked up the system is and how you get used to being let down by a system that is supposed to ensure your child has the best possible care.

As always I will keep you posted on what is to come and stay tuned for a catch up on other things that have happened within the last few months 😊

Much Love M.x

Posted in autism and covid19

Lockdown 3.0

It’s a strange time for everyone at the moment, no one wanted another national lockdown, but it was inevitable, and I do believe it’s for the best. I thought that after the new year I could get a little bit of my life back and can start having one but that will have to wait.

The problem with being alone is it gives you time to think and over analyse things such as school!! All the applications are in, the EHCP is in process and now I can only sit and wait and that is the bit I can’t cope with. The decision on special schools is usually made by the end of January so I should hear something no later than the middle of February but I’m now worried that they may be running behind on it because of Covid and I don’t think I can take it; the wait is already driving me crazy. If I go for worst case scenario which is middle of February, then its 35 days to wait. 35 days of freaking out about if he is going to get a place he so desperately needs and if he doesn’t, it’s even further away until the middle of April for mainstream allocations. I want to be optimistic, his EHCP is 90 pages long, his issues are profound and complex, and all parties involved have agreed it would be the best place for him but what if it just doesn’t happen? I have a whole new scenario to stress about. For someone who has lists about lists its really difficult to be able to plan for events you have no control over.

That’s exactly how I feel kid…

On a positive note, I have finished my level 2 in autism understanding and am awaiting my tutor to confirm if she passes the second module. I do feel confident about it to be honest and really enjoyed doing it, once my pass certificate arrives, I think I may do more, I have already scoped out two further courses; level 2 in challenging behaviour and a level 2 in learning difficulties, I think they will both come in handy for when I pick up some volunteer work when William starts school.

William is doing really well in his development; his eye contact has improved drastically, and he is getting very good at object exchange to show me what he wants. He even takes his own pots into the kitchen and only throw them about 10% of the time 😂 I know it doesn’t seem like a lot but to me it is amazing. To me a few seconds of eye contact can bring tears to my eyes.


We did have a few bad nights recently as William had some bowel issues 💩, he ended up in my bed for over three hours crying and needing me to rub his tummy. I wish I could take his issues away and make him feel better when he’s in pain.

I’m so grateful that nursery is still open during this lockdown as I am not sure how I would be able to work and look after him as he needs constant supervision. My head tells me that I should have made the decision to keep him off to protect us from potential contact with Covid but the disruption of his routine would also be hard on him and he has had enough of that recently. If possible I want things to remain normal for him.

We have lots of messy play planned for lockdown which I’m really excited about but may regret deeply 😂 We tried out slime in the bathtub which was super fun messy but totally worth it to see Williams face, not so much the having to clean the tub part.

Next on the list is finger painting so wish my upholstery good luck 🍀

Posted in Appointments

Hello

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.

As always, much love from The Buckley’s 😘 xxx

Posted in Emotions

It’s in the DNA

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.

Posted in Brief updates

In a GAP

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.

The look of pure joy that he is naked and put of his awful onesie

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…

  1. Our GP sent a referral to the community nursing team
  2. The community nursing team rejected this as he is under 4
    • NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
  3. Our GP sent a referral to paediatric medicine
  4. 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
  5. I chase the paediatric medicine team who told us what they had done
  6. I call the GP and they tell me to call the community nursing team
  7. I call them and they only know about the original referral and won’t accept another one as he is still under 4
  8. 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
  9. 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
  10. 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
  11. She is going to call our health visitor and William’s own paediatrician for help and call me back
  12. 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!
  13. 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?

Posted in Emotions

Understanding and accepting

Before acceptance must come understanding.

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.

Much love, The Buckley’s Xxx

Posted in Emotions

I F***ing hate you

Its nights like these I really wish autism was a physical being so I could kick the shit out of it. I fucking hate you autism you son of a bitch!!!

Its 11:30pm and William is still awake. He is calm and comfortable watching TV in his room. Before anyone jumps on the too young to have a tv in his room please remember that the only thing that can soothe William is the wonderful invention that is BabyTV and even then that’s only works some of the time. Could you imagine my neighbours during his frequent 4am screaming fits without it?

A little while ago it was a completely different story. William had spent the last half an hour or more hitting himself. Believe me it felt like a fucking lifetime. He doesn’t have a massive amount of strength in his arms so one little slap wouldn’t necessarily hurt anyone but he continuously slaps his stomach or legs with both hands until they are red. It’s really difficult to watch and if I try to restrain him he will lash out and bite me or become even more upset. And believe me when I say this he has the strength of a pitbull in those jaws.

Its these moments in which I feel like a huge failure as a mother.

I have tried everything to pull him out of these self harming states but nothing works so I tend hover in the hall or in his room and try to distract him but often just watch him and cry.

It makes me feel like an absolute failure as a mother. I’m supposed to protect him when someone hurts him… what am I supposed to do when he hurts himself?

The worst thing about this evenings episode was the reason he was hurting himself, it was something as simple as needing a poo and then the discomfort of needing changing afterwards. This has never been a cause before tonight and he is on medication to help him go but for some reason tonight it was an issue for him.

I need someone to blame. Someone to shout at. I write often about accepting that we are not to blame for William having autism but it was easier when we did think it was us because it was easy to direct hate at ourselves.

Who do I hate now? The diagnosis we still don’t officially have? The genetics that he may have inherited? The fluke that may have caused it? God? I just need something or someone to be mad at! I just need a reason… Why?

Posted in Causes

Not worthy

Look at these faces… remember them x

I recently read an article detailing the fact that a doctors surgery in Somerset sent a letter to Voyage Care, a facility in which supports adults with Autism and other learning disabilities.

The letter stated that the adults in their care should all have a DNR agreement in place in light of the current Covid-19 pandemic. In case you don’t know what DNR stands for it means do not resuscitate which basically means that if your heart stops or you can not breathe then medical staff will not issue CPR. No chest compressions. No mouth to mouth. No respirators. No defribrillation.

The ethics of asking anyone to sign or agree to a DNR is shaky at the best of times.

This letter was sent without any consultation with the families of the adults in question. Having any form of learning disability is never a reason to decide not to help someone to survive!

The British medical association states that a blanket DNR targeting one group is completely unethical and unacceptable. But then that raises the question of who authorised this letter to be sent in the first place! There is a huge stigma around those with learning difficulties including Autism as many people do not fully understand. We as a family are still only dipping our toes into the waters of understanding.

I simply can not understand how anyone would think it was ok to send such a letter! Can you imagine either been that ignorant or prejudice that you decide a whole group of people don’t deserve to live? Look at the people who pump themselves full of drugs and alcohol… they deserve transplants and a second chance at life but my boy when he is older would not?

Remember Emma, Mark, Martin, Ted, Tom and Warren? If not scroll back up and take a second look…

In 2007 Mencap published an article called ‘Death by indiffernce’ that highlights the fact there is an institutional discrimination within the NHS which leads to those with learning difficulties getting a substandard quality of care or in some cases none at all.

Emma. July 2004. 26 years old. Emma had a learning disability, this mean she often exhibited challenging behaviour and had difficulty communicating. Emma had Lymphoma B1 cancer. Her survival chance was 50:50. Her treatment was delayed on multiple occasions as she could not consent to it. No pain relief was given. The high court had to get involved and when treatment finally started palliative care was the only course to take.

Mark. August 2003. 30 years old. Mark had a severe learning difficulty and very little speech but he had his own way of communicating with his family. Mark broke his femur and had an operation which resulted in him losing a lot of blood (40% of it to be precise). The staff also failed to give him his epilepsy medication. He was discharged despite still incurrring pain and had to be re-admitted on multiple occasions. It took 3 days for the pain team at the hospital to see him. He died less than 9 weeks after his operation. The medical staff involved did not believe Mark’s family when they told them something was terribly wrong with him.

Martin. December 2005. 43 years old. Martin had a learning disability and no speech. Martin suffered a stroke and was sent to hospital were he contracted pneumonia. The stroke effected his ability to swallow so he could not take in food or water orally. He was placed on a drip which he didn’t handle well and often pulled out. On his second week in hospital it was established that the drip wasn’t providing him with the nutrients he needed. A speech and language therapist visited him repeatedly and advised he should be nil by mouth and other methods of feeding should be introduced. He was in hospital 3 weeks before they decided to intervene and by then it was too late. His veins had collapsed and a PEG feeding tube needed to be inserted but he was too unwell to withstand the operation. Martin went 26 days without food and nutrients before he died. The hospitals policy was to introduce alternative methods of feeding after seven days but they failed to adhere to it costing him his life.

Ted. May 2004. 61 years old. Ted had almost no speech and a severe learning disability. He was admitted to hospital with urine retention requiring a minor operation and remained there for 3 weeks as he suffered a mild heart attack and a post operative infection. His condition was assessed as concerning but the hospital pushed to discharge him back to his residential home. He was sent home and collapsed and died the following day. Following an inquest it was established that he had died from aspiration pneumonia.

Tom. May 2004. 20 years old. Tom had profound and multiple learning disabilities. Tom’s school advised his parents his was distressed but presumed he wasn’t happy there however they knew he was distressed because he was in pain and pushed for medical investigations. A consultant stated further testing was needed but it seemed to be an issue with his digestive system. No further investigation took place. Tom’s doctor decided against a PEG feeding tube because of fears Tom wouldn’t tolerate it. There was no discussion of alternative feeding methods with his parents. After school was over there was nowhere suitable for Tom and he was placed in a psychiatric unit who stated they would assess his needs and act upon them. They didn’t. Tom was losing weight fast and expressing some disturbing self mutilating behaviour in which his parents were sure it was him expressing his pain. Tom was moved to a social services residential home who admitted him to hospital. Tom had an ulcerated oesophagus. The hospital agreed to fit a PEG and the operation was carried out. Tom died before he could receive the nutrition he needed. So many different agencies look after Tom before he died and no actions were carried out resulting in his death.

Warren. September 2004. 30 years old. Warren had a severe learning disability and very little speech but could communicate well with his family. When Warren first showed signs of distress his parents called the doctor out on three occasions. His parents had their suspicions that he had a problem with his appendix or bowel but the doctor said no. A month down the line they called the doctor out again as he was having trouble swallowing and losing weight. They were told it was a virus. As he was not eating he was also not getting epilepsy medication as it was administered via his food. The doctor gave paracetamol and diazepam to calm his seizures. The next day his parents called an out of hours doctor out who told them to take him to hospital for a stomach xray but that nothing was seriously wrong. A few hours later they called him again and an ambulance was sent. Warren’s parents deceived a negative attitude towards Warren by the hospital staff. 2 hours after admission Warren had died. It was his mom who noticed he had stopped breathing. He died of an infection caused by appendicitis and a blockage caused by a paralysed bowel. Warren could not communicate but multiple people refused to listen to his parents concerns despite them knowing him better than anyone.

Remember them… they are only a small selection of people.

It took the deaths of Emma, Mark, Martin, Ted, Tom and Warren to bring about an inquiry into the inequalities within care that people with learning disabilities face.

Death by indifference: 74 deaths and counting…5 years on. Published in 2012 contained multiple case studies. Including the below remember them; Sophie, Kirsty, Lisa Barbara T, Daisy, Chantel, Carole, Kyle, Betty, Maria, Barbara D, Christian, Karen, Clive, Paul, Tina, Brian, Christopher, Ronnie, Kelly, David I, Michael, Alan, Sandra, Anne, Nicholas, David T, Sammy, Susan, Noel, Raj, Jasseke and 15 unnamed people.

Seems like a large number doesn’t it? Well almost 1200 people with learning disabilities die unnecessarily in hospital each year! Mencap have launched a campaign called ‘treat me well’ which advocates in making simple changes which will have a big impact to the way in which hospitals deal with patients with learning difficulties. I have signed up for as much information as possible in regards to the campaign so hopefully we as a family can get involved in making things better because let’s face it… it couldn’t get much worse.

Mencap, the voice of learning disability.

Posted in Appointments

If you’re not on the list, you’re not coming in!

Today was THE day! Everyone said it was… everyone said it was THE appointment to get him on the ASD Panel waiting list. We were referred to the neurodevelopmental paediatrician because she would be the one to put him on that list…
I should have known better, why would this be THE day. A miserable cold day in January when none of the previous ‘THE day’ appointments had been the actual day.

Yesterday we had a tiny step for babykind but a massive leap for William👨🏻‍🚀 He has been using a fork! 🍴 He had actually been scooping and stabbing his own food and successfully getting it in his mouth. This amazing coordination is a huge achievement for him. He hasn’t reenacted this at home yet but he has a small toy that involves putting a disc into a slot and he has also master that. His current favourite game is putting the disc in and passing me it to fire out for him to do it all again… so basically I spend a good portion of my evenings playing fetch with my toddler 😏
His other favourite pastime is holding me hostage in his room and forcing me to play round and round the garden until I can escape but we are currently on game number 1,00000003 and he still laughs before I even touch his hand which means I will keep going.

His bedtime routine hasn’t improved although our morning one has. His Nanna bought him some adorable all in ones to sleep in which means we don’t have to fully disinfect his room every morning. Don’t get me wrong he still tries to take his pants off at every opportunity… he is just like his dad in that way 😜

He isn’t lashing out as much as he has done in the past but his routine is now settled again so i am hoping it stays that way if he encounters changes. He does need his nails cutting soon so if any of you see me with a bloody face then you can probably guess why.

Today didn’t start particularly well, both David and William had to get up much earlier than usual and neither of them handled it well. I basically hand to turn into Gny. Sgt. Hartman to get them sorted and out of the house! I’m not exactly pleasant when i’m stressed.

Traffic was horrendous and we stayed in the same spot on holderness road for 15 minutes and then to cap it off when we get on our second bus we ended up miles away because the shitting ‘movit’ app crashed. THEN google maps told us to go in the wrong direction! Needless to say both me and Dave were very stressed and took it out on each other. He shouted at me, I shouted at him and then we didn’t speak…

Arriving late is never the impression I want to give so I was very on edge when we finally arrived. The paediatrician whose name I can’t remember didn’t come across well, I don’t know if its because I was on edge but she was very condescending and told Dave off for fidgeting because it was distracting her.

She tipped out some toys for William to play with and grilled us about family history and when William reached his milestones. I couldn’t remember when he first smiled and I felt like a terrible mum. I remembered he was 10 months when he first sat up and 21 months when he was walking independently but I could not for the life of me remember when he first smiled. I remember the feeling and the fact I cried when he first looked at me and smiled but not when.
She asked about our family histories and if any one had any history of ASD and there is one person in each side of the family. Both boys and both in Williams generation. Both on our Fathers sides.

How is his medical history, how many times has he been in hospital? How many times has he had antibiotics? What caused his massive allergic reaction? what are his bowel movements like? apparently sluggish bowels are often found in children with autism.
Does he have any birthmarks? What was he like as a baby? Was I on medication when pregnant? Other than GD did I have any issues? Did I breastfeed? How was the labour? Well it was fucking hard! it was definitely no walk in the park.

Then she asked about his sleep patterns and we explained how well he slept really well until he turned two. How is his diet? well… when we can get him to eat he will eat anything and everything, even stuff he wont touch with his hands will go into his mouth. His poops often come out gift wrapped due to the amount of paper he eats. Its not worth risking a finger to get it out of his mouth. 👆🏻

Where do I work? What do I do? Where does Dave work? what does his job entail? How many hours do we work? Who lives in our house? How does William interact with the pets? How is his recognition with people? This one is always a touchy subject as he doesn’t really behave differently towards anyone. I explained we could have walked out that room and left him with her and he wouldn’t be any different. On occasion he will show immediate delight when he sees his Big Nanna or my dad but that is it. She explained how it is fairly common for children with autism to fail to bond with people and parents will often struggle due to their feelings not been returned… well this really hit home and I started crying.
I love William with every ounce of my being but it is disheartening actually more like devastating when he doesn’t care for me in the same way. If I am holding him when he is upset he will reach for hs dad and when his dad is holding him and i got to kiss him he will pull away from away. How will he know I love him if he rarely lets me show it. When we are alone and i’m the only option he will come and snuggle with me but that isn’t because I am his Mum, it’s because I am there.

She listened to his heartbeat and all was fine, took his weight and height and she also flexed his joints, checked out his hands, feet and his birthmark. Is his skin dry? No… I had forgotten about his chicken skin. I always forget about it because to me it is normal as I had it.
Basically chicken skin is a condition called Keratosis Pilaris, it’s basically a build up of keratin in the hair follicles that causes small bumps on the skin. It is hereditary as a few of the women in my family have had it so to us it’s just the norm.

She asked us to strip him off and get him to walk the length of the corridor outside. He did it gingerly, the same way he walks anywhere. She asked us to try and get him to run but he doesn’t run. He never has… we tried to make it a game but he didn’t run just waddled a bit faster. A bit like my version of running 😂 She did speak with us about his walking abilities and how hard things will get when he no longer fits in a stroller and where to look for help. Obviously this wasn’t what we wanted to hear as we hadn’t even thought about the fact he may not get better with his walking so it was a bit of a blow.

She agreed he has a severe developmental delay and the 9-11 months bracket he was put in before was correct. That is 2 whole years behind where he should be. He will be 3 in March which seems crazy as I feel like it was only yesterday we brought him home from the hospital. Although she also agrees that he has severe autism she will not be the one to put him on the ASD waiting list. She wants the speech and language therapist to it. What the actual fuck!!! So let’s just recap who we now know wont, haven’t or cant do it…
* Ourselves
* The Nursery
* His Key Worker
* His GP
* His Health Visitor
* The woman from the Early Years Team
* The Paediatrician from A&E
* The Community Nursing Team
* The Neurodevelopmental Paediatrician
They all agree that it is highly likely he is on the spectrum but nothing has actually been done with that knowledge. If the S&L therapist doesn’t do it then I do know who will and just in case anyone spotted me crying hysterically in the middle of anlaby road this is why.
The waiting list according to other parents waiting time for first contact is currently 867 days. That is 2 years, 4 months and 15 days. 28 and a half months. 124 weeks. 20,808 hours. 1,248,480 minutes or 74,908,800 seconds.
I can’t imagine this wait getting any smaller and the longer it takes to get us on it, the longer it takes to guarantee William the support he needs.

Once again one referral has lead to another and she wants to refer William for blood tests to rule out any underlying issue as autism can often be the symptom of something much bigger. She is also requesting genetic testing.
A genetic test can not diagnose autism or detect it early but there are 100 genes that have clear links to autism but no one mutated gene can cause it. For example there is a clear link between children missing the chromosome called 16p11.2 and autism however one 1 in 4 of those missing this have autism.
This test can give us a reason as to why him? and I know it’s selfish but I think as parents we need to know its not our fault and that we haven’t caused it somehow.

So no answers were given today and today was not THE day we get on the waiting list. We are back in three months and hopefully will feel like more parts of our journey have been completed.

On a separate note we received a message from the nursery today about an exciting new room they are creating. A sensory room! Children with needs like William’s will be able to spend their time in a special environment tailored to them. William’s Key worker Val will be based in there permanently and as William needs 100% support so will he. I am so pleased with this development. They are a fantastic nursery and i’m very lucky we chose them to care for William.

I started writing this at 7pm and it is currently 1:15 in the morning. William has been throwing up since about 8pm. Terrified me the first time as I thought he was choking on it. He only ever been sick like this once before and it was over a year go.
Currently I have a pile of sick covered clothes, cushions and blankets (both mine and his) that need to go in the wash, his pram and travel cot (I didn’t want him in his room alone if he was sick again) sat drying next to the radiator and William asleep on the sofa behind me with a temperature and a towel… Just in case.

Posted in Emotions

Nothing is ever black or white, Its all Blue

Autism speaks! William doesn’t, but true love needs no words…

💙💙💙

But our son isn’t disabled…Have you ever been asked to admit something you aren’t quite ready for?

Today our Health Visitor came to go through DLA with us, This is to help us financially support William as he gets older and ensure all his needs are adequately met. I was warned that the forms are not pleasant. Well they are in fact 61 pages of hell!!! 😢

Is my son classed as disabled? I’ve only just plucked up the courage to tell people he has special needs, I know this is just me focusing on the wording but it stings to think that people will class him that way.

Getting hold of the form was hard. We went to the Wilson centre who told us to go to Jobcentre. We went to the Jobcentre to be told we needed PIP forms and to call a certain number… we don’t need PIP forms as he is under 16 but no we apparently needed PIP forms. WE DIDN’T!

There is no hiding from anything with the DLA form. Right from the beginning where it asks you to tell them what is wrong with your child and when did you notice? He has a severe developmental delay and I picked up on it from when he under a year old… It doesn’t give you the option to tell them you have your head in the sand for a year. That you were scared to admit it out loud.

There is then a full section about how he walks and gets around, which we aren’t allowed to fill in until he turns 3 so we will be doing it all again in March.

The rest of the section asks you to put time on things he can do or things you have to do for him and this is heartbreaking to fill in. I think the worst part was admitting how difficult bath times can be. He is fine sitting in water but as soon as we need to actually wash any part of him it becomes a traumatic experience. it can often be a 2 person job to bath him, one to hold him down so he doesnt hurt himself and one to wash him as adequately and quickly as possible.

We sent the form off and have a long wait ahead of us to find it if we are eligible, it can take 40 days for an initial answer and should his application be refused, we could send an appeal against their decision which will take more time.

Once again I can add this to the ever expanding list of things we are awaiting confirmation for…

Christmas Jumpers for our Sunday big nan visit

Its been a tough few weeks recently, William seems to have regressed in his behaviours and seems to be lashing out at me more than usual. Not his dad just me… what did I do? He purposely scratched my face when he was frustrated which I’m not going to lie hurt like a motherfucker! the valuable lesson I have taken from this is to make sure I keep his nails short however cutting them is an awful and thankless task. Imagine if an octopus had claws on each tentacle and you had to avoid 7 of them whilst pinning the other one down, that’s what its like cutting his nails. Except that the octopus is screaming and biting to get away from you.

Today we had a full on meltdown because I wouldn’t let him eat ‘another’ packet of Parma Violets. He went to find more and threw them all over the floor before throwing himself down too and refusing to get up… I tried to lift him but he’s very smart and makes himself go all floppy! considering developmentally he is less than a year old he does show some terrible two traits which we were told is a good sign (insert eye roll here 🙄)

His sleep is very disturbed now. From the moment we brought him home from the hospital he slept for 7pm until gone 10am and we had to wake him up not the other way round. People called us lucky. I don’t feel lucky anymore. He goes to his room at about 7 to 7.30pm and precedes to destroy his bedroom for a good hour or more. Draws opened and emptied, everything he can physically reach ends up on the floor and in pieces. Juice everywhere and if we are very ‘lucky’ he will often smear the contents of his nappy around the room. Three times this week we’ve had to hose the boy down in the shower and disinfect his room and carpets ready for the next day… we go through a lot of sheets and a lot of wash powder. The washing machine is always on.

William hums and seeks comfort in his clothing tags. His key worker has recently given him a lego chew brick so he can fulfil is oral sensitivity needs but keep his hands free to play.

This is most likely our last post until after the Christmas holidays so I want to end it on a positive note!

William has an appointment with a paediatric neurodevelopmental specialist in January 2020… this confirmation is correct and came after Sarah⭐our amazing health visitor called our GP due to the last referral debacle.

We hope you all have a very merry christmas & a happy new year! 🎄🥂