After telling the whole village about Joe being autistic I would have thought his parents would have spoken to him about it. I understand he was 5 when he went missing but to not even address it is a little peculiar. It’s really sad that he had to hear he was autistic from someone else.
Telling William that he is autistic has never been a question for us. When he is old enough to understand we will explain it to him. Our main issue is how we tell him, how we will explain it to him. It’s not as if we can answer the why’s he may have. ‘Why me?’ I don’t know son. We asked ourselves the same question for years. It’s a hard thing to plan because we don’t know at what age he will be ready for this kind of conversation.
When things like this happen, it’s always Joe it happens to.
Sarah Hibbs. The A Word
The speech with the other parents at the school was interesting. It’s a lack of understanding. It’s like the other parents expected them to be able to just come up with a way he can stop these behaviours but it’s not that simple. The reasons behind not sending him to special school were very similar to the ones we had before we decided where to send William. It’s a hard decision to make. Do you want them to have a ‘normal’ school life? But then who is it normal for? Or do you send them to somewhere who can speak and educate them on their own level?
I’m not the same.
Joe Hughes. The A Word.
Episode 2 starts with the change to Joe’s morning routine. Not only is the school itself different but due to how far away it is there isn’t time for his morning routine meaning Joe is struggling even more with the change. I really love the look book they created for him. Pictures of his old school, teacher and friends and the pictures of what the new school is like. I’ve seen parents in my support group who’ve made very similar things to address changes or events. To go step by step through what will happen on a holiday, in an airport etc. They’re brilliant and if it’s something we will need in the future I look forward to naming them for William. I love a bit of crafting ☺
He’s our family’s north star, we follow him. It’s how it has to be.
Alison Hughes. The A Word.
Paul’s face when Mark is having his meltdown is so full of fear and I understand that. Is this kind of meltdown what he has to look forward to? Autism isn’t something children can grow out of and it looks as if Paul has just realised that and it is hard. That realisation that this is with you for life and it’s hard. That moment if first dawns on you. It hits you like a brick to the first but hurts twice a much. 🤕
Episode 3 had more Ralph ❤ I love Ralph so much and his relationship with Maurice is so innocent and really good to watch. I’m so glad he hired him at the brewery.
Well to be honest I did feel a bit of a stirring in the glove compartment 🤣
Maurice Hughes. The A Word
Episode 4, the night away without the kids. Without Joe. I’m not saying that he shouldn’t be the centre of their universe but they have massively lost touch with themselves as a couple. I worry about Dave and I, before I was on furlough we rarely saw each other and just touch base every now and again but it was always William centred. I think we need to make a conscious effort to spend time as ourself when lockdown is over. Dinner and a movie as Marie and Dave instead of as William’s parents.
Episode 5 starts with a video of Joe. A video his auntie has compiled of his behaviours. She wants to use the video to help parents who have ‘Joe type’ autism. She clearly explains that when people think of autism they either think of a non verbal child in meltdown or a rain man type. Autism is such a big spectrum it’s difficult not to picture one type of person. I suppose autism has a stereotype just like anything else. I will forever picture William when I think about autism but that’s not what I pictured before. I suppose its difficult to be educated in something so vast. I can honestly say that until it became part of our lives I hadn’t bothered to learn anything about it.
The arguments between Paul and Alison are so hard to watch. Paul seemed so accepting in season one but as time has gone on he seems to regress and swap places with where Alison was in the beginning.
I love Joe but I hate his autism!
Paul Hughes. The A Word.
I’m really struggling to sympathise with Paul. It feels like his character has done a complete 180° he was accepting and understanding and now he is just a bit of a pathetic dick. Especially with his views on the video. I can’t understand why he doesn’t want it used if the footage of their son can help local GPs diagnose autism sooner by giving them a better understanding.
It’s a different way of being human
Alison Hughes. The A Word.
Mark ❤ he reads his hope’s and aspirations that I believe are for his EHCP. His just wants things everyone else takes for granted, the be happy, to have an education and to be accepted by friends. Its heartbreaking and inspirational at the same time.
Every bit of progress that has ever been made to peoples attitude towards autism has been made because people talked about it, were open about it, explained it.
Nicola Daniels. The A Word.
Episode 6, season finale. Paul just wants to run away, he wants to pretend nothing is happening. He wants to end his relationship because he can’t cope with how well Alison is coping. Its upsetting because they should be pulling together but statistically parents raising a child with autism are 10% more likely to get divorced compared to those with neuro typical children. This is much more prevalent for those who’s children are 8 or over. So 5 years left of married bliss before I have to give Dave the old heave-ho 🤣 but on a serious note it is difficult to pull together when you each have your own ways of dealing with a diagnosis. We do worry about it, me more than Dave as I’m often a neurotic mess but the thoughts are always there. Will we make it through this? Can we make it through because there isn’t an end really? There is just the journey.
Overall season 2 was brilliant but in a completely different way to its predecessor. It seemed to focus more on the fractured relationships of the family rather than on Joe. It was a greta watch but again not in the same way the first was.
I would still highly recomend it and personally look forward to season 3. 💙
So the first episode throws you straight in to everyday life for the Hughes family, Joe’s behaviours, the ways in which his parents compensate for him and explain away any problematic issues (He just likes music…) and the way others have already started discussing him behind their backs.
When season 3 premiered I received deluge of texts and calls saying it was back on, I had to watch it, It’s about autism! Although I am really glad otherwise I wouldn’t have known to check it out. It did make my laugh at the time because Big Nan called as her friend called her to tell her to call me 🥴
I think i must be about 10 mins in and the confrontation between Alison and her family who think there is something wrong with Joe is so familiar that it has me sobbing 😭 The blinds are open so anyone passing may think I’m having a breakdown. Its not in any way easy to admit your child is different and its most definitely not easy to listen to someone else say it.
The cast is brilliant especially the 3 main family members; Mum, Alison. Dad, Paul and Joe. I’m slightly concerned that Christopher Eccleston is the Grandad and not the leading man… when the Hell did that happen? How old am I?🤔
Alison is doing exactly what I did, she is researching and dealing with Joe’s issues in secret like there is something to be ashamed of. Almost as if its dirty. Not the fact there is something wrong but the fact you believe it.
During Joe’s assessment with Dr. Waites Paul keeps jumping in and she threatens to make him wait outside. Dave was always so quick to jump in a explain away William’s issues and sugarcoat things. To be honest I think we both were but it took Dave longer to be honest about it.
The whole thing about birthday parties and invites is something that I worry about massively as William gets older. Will William want to be invited to parties or will it be us wanting him to be invited? It seems like the lack of invite for Joe is affecting Paul and Alison but Joe himself is oblivious.
Someone shared something on Facebook the other day about how hard it is to have people stare and judge when your little one is having a meltdown. It really does hurt when people do this. I totally understand that some people may not grasp what our child is doing and why but that doesn’t give them the right to pass judgement. It is hard to keep your chin up when your little one is trying to take other peoples food in a restaurant but then throws their own food behind their back or decides to lay on the floor or crawl instead of walking. We have actively avoided certain places. It sound ridiculous but planning to take William anywhere takes more preparation than a bloody wedding. 👰
It’s not going to go away if we call it something different.
Dr Waites. The A Word
Episode 2 jumps straight in showing Joe isolated at school, he seems perfectly happy but it hits Alison hard. William is really happy alone and we have had to learn how to play with him rather than teaching him how to play with us. However more times than not he chooses to be alone and will walk away from us to do his own thing. It took us a long time to get used to this as following him will upset him.
They push Joe into doing things he doesn’t want to do. To play in different ways, to play in a way in which is deemed ‘normal’ but this isn’t Joe’s normal and its uncomfortable to see.
Alison worries about him becoming labelled in school and how it will effect him. Paul argues that he already has a label with his autism diagnosis but she is having none of it. I guess this brings us back to one of our older posts about the benefits and pitfalls of having a diagnosis. Check it out here…
Its interesting to see how Joe’s diagnosis effects the rest of his family and to watch the conversations had behind closed doors, especially from Maurice as he doesn’t hold anything back and says it as it is. It does make me wonder what our families have said about William before we were so open about it. Did they say things like ‘he isn’t normal’? Did they grieve for the grandchild, nephew or cousin that they thought they would get? It is eye opening as in the beginning you are very much in a bubble, its just you and your child fighting for diagnosis and help but you forget the rest of family are still there with the same worries and feeling you have.
I really feel for Rebecca as the older child. She seems to be going through a pivotal part of her adolescence and no one seems to be noticing or caring. She is just left to her own devices and frankly a little neglected. She obviously cares for her brother a lot which is brilliant and they have an amazing bond, she just ‘gets him’ but it also beautifully highlights both the disadvantages and advantages of having other children. Check out our post about it here…
Watching Joe have a meltdown because he can’t get what he wants is an all too familiar situation. Joe is very vocal about wanting his music and shouts and breaks things. Whereas William will lash out at me or himself to vent his frustration. Before we could admit anything was wrong I used to think it was a way of him manipulating us into getting what he wants, although we now understand that it’s more like what William needs rather than wants. Needs to feel safe and comfortable. Whether it is a biscuit or BabyTV or even for us to press Duggee’s musical arm 5 million times in a row 🤯
Shame (insert naked Cersei Lannister here)… its something we all feel no matter how old our child is when autism is first addressed or even whispered about. Paul hit the nail on the head when he is telling Alison she is ashamed of him for having it, ashamed of them for not picking it up sooner and ashamed for feeling ashamed in the first place.
Episode 3 starts with the first meeting with a speech and language therapist… It feels a little unrealistic as it happened so quickly. There are no wait lists in the lake district? She came from Manchester so there must be no wait lists there either… Think we need to relocate 🤔
Maggie, their SALT is nothing like ours. Its was a frightening experience but that was all in our heads. I’m not a massive fan of people I don’t know coming into our house. I tend to get really anxious and end up snapping at Dave every time. our SALT was lovely, her name is Sally and she really put me at ease and William enjoyed interacting with her. Maggie is very straight talking and blunt and although it makes me like her from a viewing point of view, I can not imagine she would have gone down so well had she been the one to turn up at our house. I suppose all professionals have their own approach and use it to determine how to help their patients.
Alison is desperately trying to communicate with Joe and even tries to engage him in play. She is desperately trying to bribe him to do things with her, it feels like she wants to show Maggie that this isn’t her fault. In a look at me sort of way. I feel her pain. I would love William to sit with me and read books without eating them or play with cars on the floor in the conventional way but that’s not how he plays. He takes comfort in lining his toys up and moving them from place to place which is a solitary activity and if I get involved he gets upset.
Another thing I find super unrealistic is the fact Maggie spends so much time at their house on first visit and the fact she is coming back the following day. Is she privately paid? If that is the case why didn’t Alison recognise Maggie’s name? We waited Months and months for a SALT visit and months after that we have still only had the one which lasted about an hour.
More prime examples of Rebecca being brushed aside and forgotten. She is trying to get her parents to show an interest in her school play and they immediately turn it into another conversation about her brother. Every time she tries to talk they ignore her.
It is something we are very aware that we already do, our world revolves around William, making sure William is getting the adequate support is our main focus and it is one of biggest talking points. Why shouldn’t we tell people what’s going on, his achievements or even how hard it is? But this shouldn’t been done at the detriment of other siblings. This is why having another child worries us so much. The unfairness of it all. How could we go from giving William 100% of our time and energy to splitting it? could it be split equally? Should it be split equally?
Alison missed Rebecca’s play, she missed it and it was so important to her. All because she wanted to bully Maggie into seeing Joe. To top things off they end up arguing about Joe and don’t even realise that Rebecca has gone 😢 I can almost smell the teen pregnancy story line in the works.
I must say the soundtrack is absolutely belting 🎧
Episode 4 starts by showing how much strain Paul is under and how Alison is pushing all her energy into Joe and getting him help. She has actively volunteered for the school in order to gain more insight into Joe’s behaviour with other kids and it’s difficult to watch. It made me feel uncomfortable, she is there to supposedly help the other children read but is focusing on spying on her own child the entire time. However I don’t think I should be surprised she is neglecting other peoples kids when she ignores her own daughter all the time.
The Fever Effect, A fever usually makes you less alert, tired, and ratty however in some children with autism, a fever makes them ‘better’, more social, alert, even talkative. It has been described as providing a glimpse into what your child might be like without autism.The hope in Alison’s voice as she tell Paul that Joe is ‘turning a corner’ after he has been poorly is absolutely heartbreaking. You can see it in Paul’s face as they embrace that he knows it’s not true. And then the next day Alison describes him as being ‘back to abnormal’ 😢
She said she felt like she could see the real Joe underneath all his autism. 🤔 Joe is Joe. Having autism is part of who Joe is, it’s a pivotal part of Joe’s make up the same way it is William’s. Those moments in which he looks at me and I mean really looks are so special and I wouldn’t trade those for the world. even the times he can stare into space and be in his own world and then just giggle at whatever is in his head…. granted late at night this creeps me out and I often refer to him as a psychopath 🤪
Oh god Rebecca hit the nail on the head suggesting Alison’s manifesto for school governor. ‘All children matter but not as much as Joe’ ouch! Shots fired! 🔫🔫🔫
Episode 5 shows how the loss of a person can massively effect not only someone with autism but their family too. It beautifully displays the slow build up of Joe’s emotions and how he struggles to release them. He loves Maya in his own way and the fact that she has been taken away from him takes it’s time to sink in fully and its heartbreaking to see. He begins by withdrawing slightly and then slowly goes into full blown meltdown. Its beautifully handled by actor Max Vento.
William’s main worker at nursery was originally a woman called Linda, he loved Linda so much and couldn’t wait to be with her. He didn’t bother with other children but could happily spend all his time with her. Linda was lovely and motherly not only to William but to us too, she just had a way about her that immediately put you at ease. I knew our little boy was safe with her. BUT William couldn’t stay with Linda as he needed someone who was trained in children with SEN to help him develop. In came Val… she specialised in SEN. She was going to be William’s key worker meaning he couldn’t spend his time with Linda. It was OK at first but then William started actively trying to find Linda at nursery, giving Val the slip. When this didn’t work he stopped wanting to go to nursery at all. 😢 Do you know how we fixed it? We didn’t. It was hard and difficult but he needed Val. He needed her to support him properly in his education but he needed Linda for comfort and we had to chose which was most important and that had to be his education.
Paul’s and Alison’s discussion about having another child perfectly represent in equal measures our own thoughts on the subject. They argue about it as two sides of the fence but with us we just sit in the middle both agreeing with the reason for and against but commit either way. One day it’s a 100% not a chance in Hell and the next we are a little broody. 🤷♀️
Episode 6, the series finale. It kicks off at the launch of their family pub and Joe is struggling. It’s hard for him to be around so many people in a new environment. It’s bloody hard for me to be around so many people in a new environment and I don’t have autism. Alison is desperate for Joe to stay as he is part of their family but Paul is quite happy for him to be left out and removed from the situation which feels as if it’s done to save embarrassment.
Joe goes missing whilst with his grandad. Paul and Alison are speaking to a search party and they’ve just admitted to everyone that Joe is autistic for the first time. Alison describing the fact he may not know he is lost or in even in danger has really struck a chord. One of my biggest worries about William’s future is because he has no perception of danger. I’m sure I have said it before but he would walk off a cliff if it was to get to biscuit.
The suspicion that falls to Ralph is awful. Alison immediate pegs it for what it is and that it’s because he has Down syndrome. Just this small conversation shows how much Alison is growing in her acceptance of disabilities but then she goes round to their house and confronts Louise and Ralph anyway 😕. She shows these signs of growth but then disappoints as usual. The theme of prejudice runs strong in this series finale especially how bad it can be within such a small community.
Overall season one was brilliant. I’m not going to lie, it wasn’t an easy watch and some parts have been like re-watching conversations and feelings Dave and I have had over the past two years. The stress placed upon Alison and Paul’s relationship. The lack of communication. Its things we have all gone through as we come to terms with as Paul puts it; our grief over the children we could have had.
Its is definitely a series I would recommend to anyone who has an autistic child within their lives as it gives an accurate insight into not only what the child goes through but their families too.
I look forward to starting season two and hope it is as good as the first 😊
Nicola reached out to us on our Facebook page to share her story, she is currently organising the first free online pathological demand avoidance summit which will take place between 3rd – 6th July 2020. Pathological demand avoidance (PDA) is part of the autism spectrum and is used to describe those whose main characteristic is to avoid everyday demands and expectations to an extreme extent. It can also be referred to as Extreme Demand Avoidance.
according to NAS (National Autistic Society) the distinctive features of DPA profile include:
resists and avoids the ordinary demands of life
uses social strategies as part of avoidance, for example, distracting, giving excuses
appears sociable, but lacks some understanding
experiences excessive mood swings and impulsivity
appears comfortable in role play and pretence
displays obsessive behaviour that is often focused on other people.
People with this profile can appear excessively controlling and dominating, especially when they feel anxious. However, they can also be confident and engaging when they feel secure and in control. It’s important to acknowledge that these people have a hidden disability.
In Nicola’s words…
I’m sharing this as it would have made a huge difference to us as a family if any of the professionals we were in touch with knew about PDA, it would have made a huge difference to us as a family. I’ve started to see that the more I’m sharing on social media, there’s more people I’ve started to see the more I’m sharing about this on social media there’s more people understanding that their children aren’t naughty just have different needs.
It was a chance conversation with a friend after we had been through the most challenging time yet. During this chat she mentioned three letters to me that I’d never heard before : PDA
When my son was young getting him to do anything was a struggle. My husband and I were met with constant meltdowns and upsets. Something as simple as dressing him and taking him to nursery on time was impossible. Everyone told me it was just toddler tantrums and he would soon grow out of it. But he didn’t. In fact, things only got worse. He became extremely fussy about food. If two different items on his plate touched one another he wouldn’t eat them. He left anything that was the slightest bit burnt and he’d even refuse a chocolate bar if a piece of it was broken.
A simple description of PDA is: Anxiety need to be in control and avoid other people’s demands, this can be ordinary daily tasks such as getting dressed, eating and going out even to do their favourite activities. They will often go to extreme lengths to avoid the demands For example negotiating,distracting, creating an excuse, or saying something shocking If all this fails then a meltdown.
When my son was younger he was very set in his ways and would only play with certain toys in a regimented way. On top of all this, he barely slept. Me and my husband were permanently exhausted. We looked like the walking dead. He became extremely fussy about food. If two different items on his plate touched one another he wouldn’t eat them. He left anything that was the slightest bit burnt and he’d even refuse a chocolate bar if a piece of it was broken. There are many other examples I could give however I want to keep this short.
As time has gone on and we have an understanding we are able to support and guide him the best we can.
Click the logo to go to the Positive PDA website and find out more, or better yet register for the summit. Educate yourselves about one of the lesser known parts of the spectrum. The summit is entirely free during its duration and has over 16 key-note speakers. I for one have registered and am excited to learn more. Thanks Nicola 😘
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?
I have always judged people who get a puppy or dog and decide to take it back to the pound. I am completely aware there are 100% valid reasons in some cases but it always devastates me. You promised that little furry guy a new home, a good life and to love them forever…
So you can completely understand how I felt when I read a news article about a woman called Myka Stauffer. Well it turns out Myka is relatively famous but I had never heard of her. She is a YouTube influencer with 715k subscribers although I am guessing this has dipped substantially recently with #CancelMykaStauffer trending on Twitter.
Until very recently Myka and her husband James were parents to 5 wonderful children; 4 biological children and 1 which was adopted from China, his name is Huxley. As of yesterday they have been in the news because they have chosen to re-home their adoptive child because he has autism and behavioural difficulties.
It pained me to give her views which inadvertently lines her pockets but I wanted to understand who these people were before I threw my 2 pence in.
There are numerous videos about Huxley before he was even Huxley if that makes sense and the videos on average have 75k views. Three years ago she made a video discussing how much she earns from YouTube but I’m not going to lie I could not be bothered to listen to it… I have a good paperback on the go and didn’t want to waste any more time on her than needed so I went onto a site that details the net worth of YouTube channels. Her site is worth $167k 💰 and her family’s daily vlog site is worth $33k 💰and the videos of her journey with Huxley have definitely contributed to that in a big way. Even the video uploaded about ‘re-homing’ Huxley will be earning her money which is disgusting. It currently has almost 1m views. No doubt her highest viewed video to date. If its about the views for them maybe she could give up one of her biological children next and hit 2 mil!!! She used Huxley to get money before she even officially had him. She asked her subscribers to partake in fundraiser for him by donating $5 for a jigsaw piece. It was a 1000 piece jigsaw and was the first image she would reveal of Huxley… Well I couldn’t find the link for the fundraiser 😲 but when I looked on some forums I found out that apparently It was just a link to send money directly into Myka’s paypal account.
She did state she would the names of everyone who donates in a baby book for when he was older… Hmm wonder what happened to that! 😡
My first thought when stalking her YouTube channel was that her videos are not my kind of thing, they portray her as a perfect parent, wife and housekeeper which is unattainable and puts pressure on her subscribers to be like that. I love Mrs Hinch but in a previous post I’m pretty sure I told her to go and fuck herself on one of my bad days. Myka seems to have a very high opinion of herself and from the posts she has shared not relating to Huxley I feel like she is what I like to call a MOMsplainer (another parent that talks to you as if you are neglecting your child, whether it’s on breast feeding, milestones or a vegan diet, they will give you unsolicited bias advice on anything) and I don’t have time for that so she is most definitely someone who’s videos I usually wouldn’t give the time of day.
My second thought is that if she is telling the truth about why she is sharing her adoption journey then we are quite similar in our thought process. Very similar to my statement when we started writing about William, she claims she is sharing her journey to help others going through the same thing and to help educate people in the process. Believe me I’m not relishing in this comparison.
Either Myka is an exceptional actress or she legitimately has the right reasons on some level at wanting to adopt this child. The emotions she display often come across as extremely raw and in parts I really felt for her during the adoption process videos.
This is the first video she posted with the announcement of their intentions.
What upset me on this video was that they are talking about fostering before adoption but how it’s not for them because they wouldn’t be able to give them back… ARE YOU FUCKING KIDDING ME! 🤬
One thing I learnt from watching what felt like a million of these videos was that they specifically went for a ‘special focus’ adoption which means you are taking in a child knowing they have medical issues from the get go… I will repeat. THEY CHOSE THIS ROUTE! This is a direct quote from one the video’s in which she talks about Huxley’s diagnosis (this isn’t shared at this point) and what it means to them. They had received 3 different diagnosis’s at this point.
This is our boy and we don’t need to consult with any more physicians until I bring this little guy home. He’s our son and that’s that. We’re not going to trade him in. we’re not going to return him. He’s our boy.
So this crap about not being made aware of his need is absolute horse shit! in a direct quote… They didn’t want to know!
Huxley’s Gotcha Day video is heart-breaking and I’m not going to lie, my little book (a purple one this time for the blog) is speckled with tears. A gotcha Day is the day in which adoptive parents can officially take their child home. This should have been his happily ever after. 😥
From what I can figure out from their multiple levels of social media is that Huxley hadn’t appeared since late March but his appearances had been dwindling since the back end of 2019.
A post has resurfaced in which she is complaining and seeking help on a forum for parents who have also adopted from china, She is upset because Huxley is obsessed with food and will watch everyone eat and it ‘drives her husband bonkers’ well William takes food of strangers plates in restaurants and will actively enter zombie mode to get to what you have if he wants it, biting included. He has also on several occasions decided it is appropriate to come sit on my knee whilst I go to toilet… Kids are kids 🚽
The video itself is very well staged, They are both wearing white, a very common symbol of innocence. She is wearing her glasses which makes it difficult to tell if her high pitched whining is actually accompanied by proper tears.
‘do I feel like a failure as a mom? yes like 500%’
I hate to break it to you tiny tears but you were never his mom in the first place if you could do this!
Coming from the woman who seems to share everything on YouTube, she is explaining why there is no proof of these behaviours which were so difficult to deal with! She explains that little Huxley has gone to a new mommy who has medical training and the adoption agency have said they are a wonderful fit… I’m pretty sure in the announcement about adopting or one of the many that followed, you said you were prepared for the potential conditions of ‘special focus’ children because you were a registered nurse?!👩⚕️
I don’t think there is much more I can say on the subject, I do wonder if he had been her biological son would she have done the same? I could never imagine our lives without William, He’s challenging and can be naughty and I’ve often joked about locking him in a cupboard but he’s my life. My son 💙
FYI – whilst writing this Myka Stauffer has lost 2000 subscribers but her video is now on 1.1 mil.
Its not a word you would usually come across in day to day life. When I think of it I used to be reminded of the scene in Pearl Harbour in which the nurses have to mark the wounded men with lipstick.
For us triage is part one of a much bigger process, a process that has consumed our lives and will continue to do so until William receives a diagnosis. William’s triage appointment was today… As you can understand due to the current pandemic this appointment is not face to face but instead was done over the phone.
I’m not going to lie to you and tell you I slept well (or even at all) last night waiting for this call, the crazy irrational thoughts kept me awake… ‘what if they decide he doesn’t need to be on the waiting list and we have to start afresh in a different sector’ ‘what if they say he is the way he is because we are shit parents’ ‘What if I don’t say the right things?’
I know it’s irrational and crazy and so does Dave or at least that’s what he told me at daft o’clock this morning when I was still awake trying to ask Dr Google what they will be asking us. Not that it helped any way as we couldn’t find a list of questions anywhere ❓❓❓Not very helpful for ridiculously anxious people like me who like to be prepared for everything. This notebook (which I just had to find and get ready at for 4am to be prepared for a 10am call) has been with me to every appointment. The writing is messy and blurred from tears. Anybody but me would find it indecipherable but I take great comfort in knowing I have it and can refer to it when needed. It is like a comfort blanket and knowing I look over it to see what meetings we have had, what questions we have asked and what answers we have and have not received makes me feel like I am a better parent than I am.
The call came in literally as the clock ticked over to 10am, I was mid wee 😳 Appointments are never on time so I was sure this one would be the same. The woman was called Emma Gibson and she gave off good vibes if that makes sense. Pleasant to speak to, not too clinical and had a friendly tone to her voice.
So I made notes (shocking) in my little book about each question asked so that anyone reading this waiting for their triage appointment can have a rough guideline to take the anxiety off a little. Each lead to other questions so this will not be a comprehensive list.
When did you first notice something was wrong? Holy shit she went straight in there with the bullet to the head! 😔🔫 As many of you will know already it took a long time for us to openly admit something was wrong with our child and it wasn’t until William was after 2 that we started writing about him publicly on Facebook to share our journey. It wasn’t that we were ashamed, we were frightened, not only thing things William would struggle with but of the stigma that comes with having a learning disability.
Who is in your household?
Is Dave Williams dad? I had to kick Dave to make sure he didn’t pull his usual not funny trick of saying ‘as far as I’m aware’ or ‘Yes or the milkman’s’ Honestly these jokes are almost as old as the one were he says he’s shagging my sister 🙄
Do you both work? Who’s the main breadwinner? What does he do for a living? Insert idle chit chat here about how the current pandemic is effecting him at work.
Has there been any history of trauma or domestic violence that may have impacted William? I had just kick Dave but that doesn’t count… No of course not 😇
Is there a history of autism in our family?
Is there a history of mental health issues? I explained about my lengthy battle with postnatal depression and anxiety and the medication I had been on and for how long. I’m not ashamed of it, in fact i’m proud. Although it took me a long time to seek help, I eventually did and came out the other side. Some people don’t.
What other agencies are involved with William? We then discussed things his paediatrician had put forward; blood testing and genetics testing and our next appointment. We discussed Lisa who liaises with the nursery in regards to his education.
Are social services involved? Eh? No!
What was my pregnancy like? We discussed how high risk it was, the lengthy induction, having an assisted labour, gestational diabetes, being in hospital longer than expected.
Is William on any medication?
Did you bond with William? Yes. No. Maybe? He didn’t really bond with me? He’s indifferent.
What was he like in meeting his milestones? Insert big head joke here and not sitting up until 10 months.
What were his first words? 🤐
What does him playing look like?
Does he make eye contact? If he does can he maintain it or is it fleeting?
Does he respond to his own name?
Does he indicate hisemotions or pain with facial expressions? Let me tell you something… Justin Bonomo and Erik Seidel are amateurs compared to William when it comes to having a good poker face. I’ve let me nerd slip out again there. Justin and Erik are two of the most famous poker players in the world.
How does he behave with other kids at nursery?
Are there any children outside of nursery that he engages with?
What kind of support does he receive at nursery?
Am I OK to contact the nursery?
Does William recognise other peoples emotions?
What are Williams meltdowns like? Like a tornado ripping through my living room. Like stepping into the ring with Conor Mcgregor. Like trying to hold onto an oiled up contortionist.
What sensory issues does William suffer with?
What are the main indicators he is about to have a meltdown?
What are his eating habits like other than during meltdowns?
Does he show any signs of anxiety?
What is his sleep pattern like?
Are there any things he cant do in regards to his motor skills? Jump. Hop. Point. Wave. Clap.
What is he like with danger? or strangers? No sense of danger or recognition between familiar adults and strangers. That was it! Interrogation over.
She was happy that William had been referred to the right place and he will remain on the waiting list 🎉🎉🎉 Relief swept over me. Tears ran down my face.
What happens next?
A letter confirming this will be sent to all parties involved. A team of specialised autism nurses will be on hand during our wait to answer any questions we may have.
The wait is currently between 2 and 2 and a half years. We will not be contacted until William is at the top of the list. To put things into number which you know I enjoy, there are over 900 people in front of him in Hull alone. In order to them to bring their waiting time down they must assess a minimum of 8 people per week and I know a company called Healios have stepped in to alleviate some of the pressure but they can’t carry out all the assessments as they conduct theirs via video link and not all of those waiting would benefit from such an assessment. The actual assessment is called ADOS (Autism Diagnostic Observation Schedule) and it is currently the standardised diagnostic tool for diagnosing ASD. The ADOS process involves observations under controlled circumstances that other professionals are able to replicate. Only trained professionals can administer the ADOS diagnostic screening, but it eliminates some of the differences of opinion otherwise possible when two different experts provide a diagnosis without following the same consensus in regards to what they should be looking for. Using the one set of clear guideline minimises the margin for misdiagnosis and errors.
When it is Williams turn for his assessment he will already be finishing his first term of his second year at school 📚 That is if they continue seeing people at their current rate.
November/December 2022 – What a brilliant Christmas gift that will be for us that year 🎄🎁
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.
Postpartum depression and anxiety that 11-20% of women experience is not at all the same as the more commonly experienced ‘baby blues’ 80% of women experience for a few weeks.
Judy Dippel, Author of ‘Breaking the grip of Postpartum Depression: walk towards wellness with real facts, real stories and real god.’
I make it no secret that I am not a naturally maternal person and I work really hard to ensure I am the best Mom for William; the kind of Mom he needs me to be but I wont lie it often feels like i’m trying to roller-blade up a mountain ⛸.
It took me 18 months to admit I was struggling as people often referred to some of the feelings I had as ‘the baby blues’. It took me a long time having these thoughts and feelings building up for me to tell anyone and even then it was practically forced out of me in the most inappropriate way possible… A meeting at work 😳
Let me start from the beginning about my journey through trying to conceive, pregnancy, labour and beyond… We agreed it was time to start trying for a baby about a year before I fell pregnant. We quit smoking and tried to be healthier. I spoke to my doctor and agreed to come off my medication; I have a neurological disorder called Trigeminal Neuropathy and the medication I was on at the time was linked to birth defects so it wasn’t worth the risks. Every month my period came like clockwork ⏰ and every month we felt great loss as if we had lost something that wasn’t even there to start with. I’m not going to sugarcoat it but I think we both blamed ourselves. Why wasn’t my eggs working? am I infertile? I know Dave felt very similar about his swimmers too. This year of trying was constantly talking about how perfect our child would be and all the things we were looking forward to. Monday 17th June 2016; I felt pregnant but had done every month so wasn’t holding out too much hope. I didn’t even wait for Dave to get home before I peed on the stick but there it was… that extra line we had been praying for🤰🏻
Pregnancy wasn’t easy; I had several factors which placed me on the high risk list and an induction was discussed from almost day one… There flew my plans of a drug free natural birth🕊 As the weeks ticked by more and more things went wrong leading to more appointments, more medication and more worry. I left work officially on February 3rd 2017 to take my remaining leave before my maternity kicked in on the 6th March. We nested and cleaned and prepared the house for a whole tribe of babies even though we just had the one – Both of our dads are twins (not together obviously!) so at every scan I asked them to check there wasn’t another baby hiding 👶👶 1st of March I had my final consultant appointment. They needed to induce me asap to get William or Barry as we had nicknamed him (his uncle Jim still calls him Baz 3 years later) The consultants exact words were “when would you like to have your baby?” OMG! Obviously since they had driven it in to us how important it was for him to be out asap we said as soon as possible, We were booked in for Tuesday 7th March 2017. Our baby would be here in a week. 😊
Only that wasn’t quite the case… your consultant tells you what he thinks should happen and why but he doesn’t tell you if it is possible or what kind of state the wards are in. Thanks very much Fatima Allam for building your birthing suite for future labours but for me at this point it was a massive fucking inconvenience! The day arrives and we were told to bring our hospital bag… Our appointment was 6pm and no one came to us until nearly 7:30pm. We didn’t need our hospital bag; they wanted to try something called a Foley Bulb induction. I wont go into the gory details but it didn’t work and we were sent home at 2am and told to come back… with our bag at 9:30am the following morning. They wanted to try the ‘Propess’ Pessary. 24 hours under close observation. Nothing happened and i’m sat on the Maple ward with other Mothers popping out their kids left right and center despite the fact I have been there longer! How fucking inconsiderate of them! Then came the tablet pessaries and the long wait for my waters to be broken. Not to mention the numerous stretch and sweeps (Dave kept calling these scratch and sniffs 🤮) It got to the point that I didn’t believe the labour ward actually existed until my 8th day of trying to be induced… My mother had visited on day 7 and like the tornado she can be (to which I am very grateful)told them exactly how badly this was as no one was telling us anything and we were both just a wreck. It was so important for them to get him here quickly but no one was rushing. I was scared something would happen to William or to me. I wrote a letter in case i wasn’t around. One to Dave and one to William; you know with the usual. Why I fell in love with Dave and what I needed from him in my absence. A bit dramatic I know but it was how I felt.
Then day 8 arrived and by 6:59pm so had William. Lots of pain, crying and a lot of help from the surgical team but he was here. By the time I was moved to a ward it was time for Dave to go home as they didn’t let dads stay back then… I was not ready for this. This tiny little bundle cried for what felt like all night and I was in a shared room. The anxiety of this crippled me. I was awake all night holding him telling him every family member I could remember and their personality traits.
The love I felt for William was instant from the moment we fell pregnant but my life was changing so much, I wasn’t me anymore or the person I thought I had been. Work had been my life since I was 17. I had worked full time and made my way up and honestly loved my job, I would stay late, arrive early and log in from home. All my friends were there or so I thought. I always remember a conversation with my sister about how people had vanished from her life when she had my niece. I wouldn’t happen to me (insert eye roll here 🙄) But she was right… I hate it when that happens. People I spent every day with for years and nights out, boozy lunches were suddenly too busy to text. I’m not going to lie it fucking hurt and I was lonely. There was something about Williams development that just didn’t sit right. It was OK for me to think it but if anyone mentioned anything I would become defensive and justify his delays. Thinking it was one thing but admitting it is something very different. I hated being on maternity leave, I was itching to get back to work and some normality. Some adult conversation. Then in the November I get the call… my office is closing. My job is at risk. AGAIN! It didn’t just effect me but my mum also and so many others. I didn’t want redundancy. I had just had a baby. I needed flexible hours and a steady reliable income. We were saved! the company I work for now was bringing us in house. I felt so relieved and happy but there was just something that made me uneasy. A deep seeded worry that I couldn’t quite shake off. I returned to work in January 2019 and felt so out of my depth doing just 3 days but it wasn’t possible to do any more because we had no childcare or the funds to send him to nursery at that point. I couldn’t remember anything and there was no refresher training or brief about what had happened in the last year. Nothing. Everyone was trying to prepare for the move and I felt lost. What was once my world was now somewhere I went where hardly anyone knew me so I had no one to talk to. No DSE equipment for my bad back as someone had taken it whilst I was on maternity and lets face it, the company was closing us down. It wasn’t going to buy me equipment for the last 2 months.
My last day at my office was emotional; it felt like the end of a massive part of my life. My mom worked in the same building so on bad days I could go and vent or cry to her but not anymore. Hell i would even miss the mold on the canteen wall, the windows that wouldn’t open and the suspicious stains on the carpet. The new office was beautiful, so modern and clean. It was only 4 years old and made me feel proud to work in a building like that but it wasn’t home; Its crazy because there were people there in the same situation as me and I just plastered on a smile… ‘this is great’ ‘yes William is beautiful’ ‘no don’t worry i’m fine’
Fast forward a year ⏩⏩⏩ A year of denial about how I was feeling, Fake it till you make it… I was under performing in my job, I couldn’t focus on almost anything so I wasn’t functioning at anything particularly well and have so many dark thoughts running around my head… Would William be better off without me? Am I the one that has caused whatever the problem is with him? how can I do my job in 3 days? Why don’t my team respect me? Why am I so lonely? Why doesn’t my child love me? why do my colleagues seem to single me out? What if our landlord follows through with his threat to sell the house? What will we do if we end up homeless? What if they take William away from me because it’s my fault? What if something bad happens to Dave? what about Big Nanna? would William be better without me? would he? Have you ever been taken into an office and told your shit at your job? actually no that’s not what was said but its what it felt like at the time. I was forced in a little cloakroom style office to face some things… some things I hadn’t spoken about before. And with each irrational sentence that I sobbed, I felt a tiny bit lighter. That night my boss called me at home to make sure I had told Dave how I felt and that I was going to the doctors… Yes and yes.✔✔
I didn’t know what to say to the doctor and spent a fair amount of time just sobbing and telling him I didn’t know what was wrong with me but he did… Postnatal depression and anxiety. Too far gone to see a councillor. That wasn’t what was said but he recommended drugs for a quicker effect; I knew I needed to say yes as I had to do something as soon as possible to prepare myself not only to be able to function in day to day life again but for the fight I would shortly have for William. I ended up on anti-anxiety medication and anti-depressants and it hasn’t been an easy road as they make you feel that you’re OK when your not so when I first broached the idea of coming off them I though I was ready but was given some poor advice by another doctor and took a deep crash back to despair.
That was over a year ago now and I’ve slowly gotten to a place where it is time to start coming off the tablets. I haven’t had to take any anti-anxiety tablet in a long time. Work is work; I am in a new job that I thoroughly enjoy and I am away from aspects that had helped me spiral but it isn’t my life. It is just a small part of it; Its my little 3 day break from my real life. I go to work on a Monday (my favourite day of the week) and my last shift is on the Wednesday and then I switch off and i’m done… well at least more than I ever was previously. We have moved house to one that isn’t falling down around us and it’s more of a home to us than the other one had been in 7 years and as you are aware we have accepted and admitted that William has additional needs and delays and things have been put into place for William to help his development and I am fighting tooth and nail to ensure he gets the support he needs going forwards. I am now a ‘Momma Bear’ and can be fiercely protective about William and his needs rather than sticking my head in the sand. I am nearly off the antidepressants all together… 1 half dose twice a week, then going down to once a week and then i’m done.
I’m not sure why I felt the need to get this down in writing. It’s not really part of our ‘Journey onto the spectrum’ but it was a big part of leading up to this point. Its a part of me.
How the hell are you three already? It feels like yesterday I held you in my arms for the first time (and then proceeded to throw up everywhere 🤮) Three years down the line and we still sneak into your room to check you are breathing, although usually we can hear you snoring from the landing now😴 That’s 1095 days (1096 since this year was a leap year) of you. Every day filled with the joy we feel at being parents to such a loving little boy. Every one of those days teaches us something new about you and the world you creating for yourself. You have made us become stronger parents and people than we ever thought we could be. We have learnt to fight for what is needed for you or even us as a family.
Its been a weird year. Its been a year of acceptance and education for us as parents; this time last year we were both in denial about Williams issues and we struggled to even speak to each other about it. Phrases like ‘He’s just lazy’, ‘He can hear you but he’s just ignorant’ or explaining away his missed milestones ‘Well he is very top heavy with his little bobble head’ (still true but not an excuse just a trait from the Hobman gene pool 🤣) This time last year we were preparing for the 2 year check and the questionnaire had not yet arrived… but when it did we had a moment of clarity that all parents should have and agreed to be brutally honest about what he can and cant do. We filled it in with pencil and rubbed out so many times. We both took the time off work to make sure we could go together and keep each other honest. It was hard. Those of you that have reading this since we started it will have travelled with us on that journey and felt what we felt. Cried when we cried and gotten angry when we have. We have had meetings about meetings, meetings about plans and a few meetings which actually resulted in action.
When we moved house in summer we decided to put Williams name down for the nursery that is attached to what we thought would be his school in the future… We are yet to receive a call to offer him a place in the nursery but I can categorically say we would turn it down. His current nursery have been amazing meeting his additional needs which is why we haven’t moved him and make the dreaded public transport trek back to our old stomping ground. They have been so supportive with us as parents and helped progress us through his journey more than we could have ever hoped. They source funding and provided one on one support with Val who is amazing with William and so knowledgeable about up to date processes for children with sensory issues, speech delays and more. They’ve arranged specialists to come in and assess William for any other issues he had been facing and kept us so up to date with his progress both developmentally and socially. They arrange quarterly meetings to discuss next steps with us and all the professionals involved with William to ensure we are all signing from the same hymn sheet 🎶 If any one reading this wants any information on his nursery for their children please contact us via our ‘Lets Talk!’ page.
What a difference a few hours make… I often draft my posts and come back to them if I get too emotional or life gets in the way, I won’t take back anything nice I said about nursery as its all so true HOWEVER… today william came home with 2 bite marks. NOT 1 BUT 2 OF THEM! Apparently 2 separate instances today and there have been 2 others on different days!
Thats 4 different bites over the last month. I understand that children with complex needs can lash out or simply not understand what they doing especially as William has bitten me on occasion however as William should have 1 on 1 support 100% of his time there you would imagine these could have been preventable or at least the second instance today! If it’s the same child (dont care which one) then safeguarding should be in place so that supervision is on hand at all times.
If William has been bitten four times how many other children have been???
I have reached out to the manager to find out what is happening and what they are putting in place to prevent these incidents going forward so I will keep you updated on that.
We are in a little bit of an appointment limbo right now, for the first few months we had multiple appointments and now we only have one in the pipeline which is 2 months away. Don’t get me wrong it is an important one as its the PCP meeting (Parent Centred Planning meeting) to discuss his future education and where best would meet his needs. We will then put steps in place to obtain an EHCP (Education, Health and Care Plan) which will ensure he receives the support he needs when he transitions from nursery to primary school.
I think we have both come to the conclusion that as things stand now that William will need to attend a specialised school who can cater to his specific needs however places in these kinds of schools are very limited as it is a massively underfunded sector. Money is often ploughed into hubs at mainstream schools which has provisions for children with additional needs however any child placed into one of these hubs is a child that thats needs to be in a specialised school and just watching the parents of children starting school this year talking about it on my support group was heart wrenching and filled me with a low burning anxiety that doesn’t seem to be going anywhere any time soon.
We have received reports back from speech and language and IPass confirming verbatim what they had told us after their visits to nursery. They both contain what will happen next but no dates so we are just waiting for further info like with everything else. Just like waiting for his blood tests and genetics testing… just waiting for them to hit the mat in an afternoon 📫(our postman likes a lie in)
It’s just the long wait now… sorry I mean the long wait just continues now.
No confirmation as of yet that William has been accepted on to the ASD Panel list but again we are waiting for it.
It took me a long time to be able to tell people that our child has special needs, that our child has a developmental delay or that I look like shit because I was up until 4am just laid net to him on his bedroom floor. There is no shame in having a child with autism or a child that hasn’t hit their milestones when their peers have but there seems seems to be this stigma around it or at least that’s how we felt. I share many stories about William (with any one who will listen) and always explain he has additional needs but i’m not sure why. Why do people need to know? why do we as parents feel the need to explain their behaviours? Does Tom, Dick or Harry need to know? I suppose any parent in our position will tell you that everyone on the outside of this not so elite circle will tell you that they know a person with autism and they’re fine or they know someone who was non verbal and now they speak all the time etc etc etc… blah blah blah
Autism is a spectrum which means it covers a range of conditions so although autistic people share certain difficulties not one person who has autism is the same as another who has it. This means that they need different levels of support. Most people on the autism spectrum will learn and develop but only with the right sort of support which if you have read our previous posts can be difficult to get.
Today was a difficult day. It started at about 1am in which William was awake and having a full meltdown so I did my mental check list
Does his bum need changing?
Is he thirsty?
Is there something in his bed that he doesn’t like?
Does he want a cuddle?
Does he have a temperature?
At 1am the answer to all of these was a definite no. Number 2 resulted in him shoving his juice bottle into the side of my head and number 4 resulted in him hitting and biting me. I tried everything to calm him and by 4am we were laid on his bedroom floor just staring at each other. I couldn’t touch him and I wasn’t allowed to make any noise but he was at peace for the first time in hours so the back pain this morning is most definitely worth it.
Fast forward to a very sleep deprived mum this today and i’m not sure who has cried more. Me or William?
I understand this is a little bit of a ranty post but I just like to speak or when that’s not possible type and those that know us personally understand how angry I get when i’ve not slept 💤
William is currently in his room destroying everything that is still standing so i’m hoping he will soon tire himself out but that’s as likely as us winning the euromillions!
I refer to William quite often as a psychopath... when he hits me and laughs, then I tell him off so he fake cries and then laughs again... honestly he is such a character and a master manipulator; when Dave wakes up he will start crying. Dave runs in 'is he ok?' 'how long has he been like this?' he will scoop him up and cuddle him and William will just happily lay there with him. I can't help but feel a little jealous. They have a beautiful relationship and it stings a little that William doesn't have that kind of bond with me. He never hits Dave. Never bites him. Its it because I am the one that is here more? and his time with his Dad is more precious to him?
I sometimes think it may be because I struggled to bond as well with him straight away. As many of you are aware it took almost 2 years for me to admit and be diagnosed with postnatal depression. I loved William before he had even entered this world but struggled to adjust to such big changes in my life.
I went from working full time and my life been my job to been on maternity and finding out my office was shutting down. Then as time went on I started to realise William wasn't like children his age. It was tough and I think I hid it well for quite some time but did William pick up on this?
I think Family life is never what people picture it is. Movies, TV, books and social media put unrealistic expectations on people to have a perfect life and it has taken me a long time to realise there is no such thing! My living room is a mess and covered in dog hair and toddler snot so fuck you Mrs Hinch with your baby, dog and immaculate house! Although I do love the products she uses 🙂 Fuck you Kylie Jenner with your washboard abs 4 weeks after giving birth! In fact you know what, Fuck you Kevin Systrom & Mike Krieger for creating a platform in which pictures are worth a thousand words and every single word is a fucking lie.