I said we would post as much as possible now we are both working and out of furlough, aiming to post once a week and unfortunately last week it just wasn’t possible. I would love to fib to you all and say I didn’t have time but to be honest I just didn’t have the emotional strength and need to pull myself through how I felt about the genetics results.
So first I’ve had my little pity party and it’s time to pull myself together – or at least that has been what I’ve told myself since the last post and I do feel a lot better, I needed to process and understand but unfortunately I was too quick to blame myself and wallow.
I thought I had gotten past the blame game but obviously it only takes one letter to put you right back there again, back in that pit of guilt and anger. Thankfully it didn’t take too long to crawl back out and I managed to do it naturally without having to fall back on the medication I once took for depression and anxiety. It shows how far I have grown in the last 18 months.
I know that there is nothing I could have done differently which would have stopped William having special needs.
I know also know that the additional material he has may not be the cause of his needs and delays.
It doesn’t matter that the additional material came from me, what matters is that anything more sinister has been ruled out.
I can hand on heart say that I love William more than life itself, not in spite of the challenges his needs bring but because of them. I think they make us as a family appreciate each other more. They make us look at the world in a different way and seek out understanding for other children like William.
God only give us what we can handle, its not always going to be easy but it is possible. He knew how hard we would fight for William and how much love we would have to give him. Its hard to have faith sometimes but I know my purpose is to nourish and love that little boy who I am honoured to call our son.
P.s William has his vaccinations today and tried to punch the nurse 💉🥊 but a cheeky trip to the polish bakery made it all better.
P.ss Vaccinations are also not to blame for Williams needs!
Males inherit the X chromosome from their mothers, the Y from their fathers.
Williams results from the genetics testing came today and its a bit of a mouthful but… there was a variation from the normal pattern wirh interstitial hemixygous copy number gain Xp22.33. The test states there is additional genetic material.
Chromosome 22 is the second smallest human chromosome (21 is the smallest) including more than 51 million DNA sectors (they’re in pairs) and represent between 1.5 and 2% of the total DNA in cells.
There is no defined link between this and autism but there are a few case studies referring to it and those with learning difficulties but not enough research has been carried out. Its is classed medically as having uncertain clinical significance.
If it has come back as nothing detected that would have been shit but manageable.
If something would have been detected on his Y chromosome I wouldn’t have blamed Dave but I am sat here now blaming myself. After all the X chromosome came from me.
Have I done this to him? To us? The paediatrician will be booking in a consultation to discuss the results in more detail and establish if further investigations are needed but now I’m terrified of what they will say… will further investigation point the finger at me even more?
I just feel like I’m back at the beginning of our journey, like all the progress we’ve made in our acceptance and grieving over a child we thought we would have hasn’t mattered and I’m back to looking at him and crying because this could all be down to me.
I think I have been pretty vocal about how all appointments and referral seem to go round for us but I held out hope (in vain) for our most recent one, to the nappy service 🚼
Let me put a little context to this. William is 3 years old but developmentally under a year. Due to his physical age he is the highest available size of nappies. He is not currently able to be potty trained as he isn’t aware of when he needs to go toilet or if he is he is unable to communicate this as of yet.
William also suffers from a lazy bowel and it doesn’t always function and it should so mild laxatives are often needed to relieve him of discomfort as he can go over a week before naturally being able to pass a stool. As you can imagine the build up of waiting to go natural or the explosion of laxatives puts any nappy to the test but imagine this happening when there isn’t any that will fit him 🤢
William also displays sensory seeking behaviors and unfortunately this involves a fascination with his own faeces. The will result in him smearing the contents of his nappy over himself and his surroundings and on occasion he has put it in his mouth.
On a night we have had to put him in a onesie to stop him taking his clothes off and removing his nappy. Unfortunately for us the little Houdini has now learnt to remove a onesie as you can see below… thankfully he was busted in time and put back into his clothing jail.
We were worried as he gets bigger what will do and we were told that there is a nappy service in our area which provides children with special needs nappies in bigger sizes which is amazing. However nothing is ever that simple.
Let me start from the beginning…
Our GP sent a referral to the community nursing team
The community nursing team rejected this as he is under 4
NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
Our GP sent a referral to paediatric medicine
The sent it back to the GP with advice to refer to community nurses or the learning disability team
NO ONE NOTIFIED US AND OUR GP CLOSED THE REFERRAL
I chase the paediatric medicine team who told us what they had done
I call the GP and they tell me to call the community nursing team
I call them and they only know about the original referral and won’t accept another one as he is still under 4
I call the GP and have to tell them exactly what the paediatric medicine team have told me
SUDDENLY NOW I HAVE TOLD THEM WHAT HAS BEEN SAID THEY CAN SEE IT ON THEIR SYSTEM
They can not help as the person who deals with referral is off (I don’t think they’ve ever been in the office when I have called) but a manager of the surgery will call me back
Kerry calls me and has no idea why she is calling me. She thinks it’s regarding his autism assessment.
I HAVE TO REPEAT THE FULL CYCLE AGAIN WHILST SHE REPEATEDLY TELLS ME SHE DOESN’T KNOW WHATS HAPPENED
She is going to call our health visitor and William’s own paediatrician for help and call me back
She calls back, she has left word for the health visitor but doesn’t know if she can help. She has called CAMHS (children and adult mental health services) and they can not help. She has called learning disabilities team and they can not help and she doesn’t know what to do.
WELL KAREN (SHE IS NOW A KAREN, I HAVE DECIDED) NEITHER DO I AND IT’S NOT MY JOB TO KNOW!
She will send me some links to places that can help.
DO YOU KNOW WHAT SHE SENT ME… A LINK TO A CHARITY SHOP AND A SITE TO SUPPORT ADULTS WITH AUTISM. SO FUCKING HELPFUL!
I found it hard not to cry or be angry whilst on the phone with Kerry/Karen and I’m sure she could hear the break in my voice when I asked her ‘what are we supposed to do now?’
And that is the question, what do we do now?
We can’t be the first parents who have come across this, we can’t be the first to be in this situation. What happens when you fall into the gap? Do we just stay there for 8 months and have a bare bottomed child or tie a carrier bag to his waist?
If I failed to change and clean his bum for him when he was physically under a year old then I would have been classed as neglectful but what about now? He isnt physically under year but developmentally he is still in the same place. Am I being neglectful? Or are the services in place being neglectful by allowing this?
People often struggle to differentiate between a child with autism and a child who is being naughty.
As a parent who suffers with anxiety it is very difficult to go to certain places and deal with other people who don’t know William like we do.
Something as simple as a journey on a bus can set me into a tailspin, a small journey can lead to an argument due to the fact other passengers look at William as see what they deem as an ablebodied 3 year old in stroller taking up a space they feel someone else needs more. Not all disabilities are visible and what give you the right to assume!
A trip to a supermarket can lead to a full meltdown due to the hustle and bustle of different people, a different environment, bright lights and loud noises. One the rare occasions he will walk, he will often end up laid on floor and go floppy because he can’t handle the stimulation and lack of familiar surroundings and comfort. This is not a toddler having a tantrum because he can’t get sweets or doesn’t want to walk, its because he is in pain.
When we go to a restaurant, cafe or bar he will beeline for any food he can see, we will stop him before he takes it but it can lead to awkward conversations, dirty looks and whispered remarks. This isn’t because he isn’t fed at home or because he is rude. This is because food is such a high motivator for him and that the fact it doesn’t belong to him doesn’t even register.
I shouldn’t have to apologise for my son for being himself but I find it becomes a more frequent occurrence as time goes on. I shouldn’t have to explain why he is the way he is, there should be a wider understanding of the autism spectrum leading to acceptance.
I truly believe that autism awareness and understanding should be educated in schools so that future generations don’t make the same mistakes and assumptions. There are no definitive figures of those with autism as no record or register is kept but based on recent surveys 1 out of 100 has autism.
Think of the children in your child’s year at school, think of the children who you went to school with. I wish I had been more aware, more educated and a better person.
I want that for the future, for children like William and for parents like us who often feel we should apologise on behalf of our son when maybe, just maybe they should be apologising to us for their small mindedness.
We take the same notebook to every single meeting, it wasn’t an expensive book; in fact I think it was a freebie from a company my work engages with on twitter but this random book has become a symbol for us, a record and a reference guide. It has been to every meeting without fail and contains scribble and tears (maybe snot too🤮) We need to start looking for a replacement as its almost time to retire this one, and by retire I mean put into storage in case we need it for reference in the future. I’ve bought loads of new notebooks but non of them are quite right. I know it may sound silly as it’s just a pretty ordinary notebook but it symbolizes our journey.
I’m not sure if everyone’s experience with PCP meetings are like ours but it wasn’t what we expected. We were sent a copy of William’s support plan yesterday to prepare us for today and were asked to look through it and focus specifically on his areas of need. Both Dave and myself sat down and picked apart this plan and what other professionals had written either agreeing, amending or adding & removing and making notes in our trusty blue notebook ready to question parts we didn’t understand or needed clarification. The support plan is twenty-six pages long and that is with a small font!
The call was at 3pm and I had volunteered to work until shortly before so that I didn’t sit dwelling on it all day, luckily Dave wasn’t back at work until this evening so he was able to look after William. Meetings are very different in the current climate so instead of having to travel to the nursery we had to, usually in silence with a few passive aggressive comments we had to gather round my desk and tune in to a Microsoft teams meeting (I spend my entire working day on teams 🙄) We expected a woman from our school of choice to attend the meeting but she was busy which is understandable but disappointing. More concerning is that our nursery representative couldn’t figure out how to work Teams. We expected to go through the points raised on the support plan and be able to put our input in whilst on the call but this was not the case, Our SENCO spoke through was each section of the plan and told us that until I next meeting we were to input our thought on Williams strengths and needs focusing on his worst days because that would be when he needs the most support. There were parts that weren’t relevant to William which had confused us last night and should have been deleted but we got some clarification which was good.
I must say the SENCO Lisa is fab, she answered numerous neurotic emails from me during lockdown and told me and the nursery (who was on Lisa’s mobile on speaking in the background) what needed to be written or included.
I think the main focus of this meeting was to discuss what will happen in the run up, during and after our next meeting. This disappointed Dave as I think he expected more from the meeting in general and didn’t take as much from it as I did.
SMART Targets have been set for William and what they are aiming for him to achieve within the next four years.
To be able to use objects, images and timetables as a point of reference in order to follow a routine. (They believe this one should be achievable by the end of the year depending on how much William regresses when he goes back to nursery)
To independently engage with a wider range of activities and toys.
Communicate my wants and needs to familiar people.
Explore a range of unfamiliar environments and activities independentlyin various ways.
Its great to see they have targets and what was very impressive is the steps they already had in place to ensure he is on his way to these, no matter how slowly.
I’m not sure if we have mention previously but William has Global Developmental Delay (GDD) and currently William is classed as being in the 0 – 11 months age bracket. He has developed in almost every area barring one into the 8 – 20 months bracket. The one that he is struggling with revolves around language and communication, hopefully he will progress when he goes back to nursery so he will officially be in the higher bracket. I said to Debs tonight that’s its really daft as it is just label to put on him but it feels really important for us to have it, to know where he is on the scale and that he has moved from one to the other.
The next step is for us to add to this pan and submit it before the end of next month in time for our next meeting which is 21st September (Happy Birthday Me 🎈) This next meeting will be to finalise the support plan to submit for EHCP assessment which will take 20 weeks from submittal to be confirmed. We should get a draft back after 16 weeks to approve or edit.
Our intention to send William to a specialised school has been documented and admissions are fully aware that that is our intention. This doesn’t guarantee him a space but at least he is on their radar which can only be a good thing ready for the application process later in the year.
The world is slowly starting to settle into a new normal which sadly means the amount of posts we have shared is slowly declining.
Jobs have resumed but sadly nursery hasn’t (at least not in a William friendly way) which means we don’t have as much time as we did over the previous months were it often felt like we were spamming you with content. #sorryNOTsorry 😂
We will still be aiming to write a minimum of one post a week however please remember that we both have jobs and a very demanding toddler 🧒🏼
This year has taught us so many things already that should have been obvious.
Hug your family a little tighter when you can. You never know when you will be able to do it again, if ever. It will have been 113 since we last saw Big nanna.
Appreciate your friends, who checked in on you to make sure you were ok. I tried to check in on almost everyone, especially those I knew lived alone or had health concerns. I was shocked at how few people checked in on us and it hurt a little.
We are not invincible! The ‘it wont get me’ attitude was astounding during the last 3 months and for the most part they were right. It wouldn’t get them until it did! It felt like this huge thing that was happening to other people but then it hits closer to home and it really shocks you, parents, grandparents, celebrities… it had no boundaries and we are super grateful that our loved ones who were affected have since made a full recovery.
Appreciate your neighbours and get to know them, I can honestly say that we have never made a massive effort wherever we have lived to get to know our neighbours but during lockdown we found that they were our biggest support and comfort whilst having a cheeky brew (or beer🍻) over the garden fences and wished we had done so sooner.
The family that works in your corner shop, the cashier at ASDA, transport workers, support workers and many more have kept this country cared for and stocked with essentials (toilet roll 🧻) during a time when others were scared to leave their homes. Unsung heros of 2020 🦸♂️🦸♀️
I went into lockdown in panic mode, I honestly worried about my mental health and how I would cope with no professional support with William, no days spent at the office or visits with family. I cried myself to sleep about how alone I was. How each day with William felt like I was drowning and every time I got my head above water another wave would take me under. Don’t get me wrong we have had a few issues like chicken pox, ear infections and bowel problems to make matters more tense but we did it. We were strong and made the most of the time we had as a family.
Dave and I are usually like ships in the night; I work on his days off and vice versa, these past three months we have spent more time together than we have in about 5 years. We got to know each other again and did daft things like play on the playstation and go for little walks holding hands. I am so lucky to have found a man like him, blessed to have convinced him to ask me to marry him and forever thankful that he gave me William.
Williams nursery is closed until September, they have offered us a place at a different site until then but we don’t think it is the best option for William as he would just start adjusting to the new site only to move again, we have been trying to keep things as routined as possible for him at home but its not always possible, I have been back working from home for 2 weeks and during my first meeting he came upstairs with a chicken nugget (successfully avoided the dog) and tried to stuff it into my ear. 🤣
I think is the beginning of a new normal, a new way in which we do things. Was the old way better than this? I guess only time will tell.
FYI. We saw Big Nanna on Sunday. William hadn’t forgotten her like she had feared. He acted as if we had never been away. She cried, I cried, we all cried 😭
After reviewing Jessie Hewitsons book and BBC’s The A Word it got us thinking about how autism is depicted in movies and I couldn’t immediately think of a single movie I had seen in which depicted an autistic character. So after a quick google search (what did we do before google eh?) I came up with a list of movies we want to work through and review or in some cases pick apart 🤔
So our first choice was on all the lists of movies we found and it was the first to come to my head and Dave kindly agreed we could watch it (not that he has a choice, I don’t think he even knows how to use our smart remote 🤣)
Author Winston Groom, star Tom Hanks nor director Robert Zemeckis have ever commented on if Gump was intended to be portrayed as autistic but there are so many traits scattered throughout the movie that it would make it too much of a coincidence however the novel was written in the mid 80’s and autism at that time was not widely recognised or understood so I highly doubt that the character was written with autism in mind but realistically in the mid 80’s did anyone have autism in mind?
Don’t let anybody tell you they’re better than you Forrest… If god had have wanted us all to be the same he would have given us all braces on our legs
That journey to school is excruciating to watch, his little face as he walks down the bus. Kids can be awful. This is what terrifies me if we can’t get him into a special school. Kids are not easily accepting of any one different to them especially as they get to high school age.
Young Jenny:Are you stupid or something? Young Forrest :Mama says, “Stupid is as stupid does.” Their first meeting is so iconic but what really jumped out for us was that Jenny just accepts Forrest for the way he is. She asks the question and that is it. She wasn’t malicious about it and didn’t push the question. Will that be what it is like for William? Will we have to warn every parent & child that William is special, that he has autism or that he is different? Or will he be able to handle it on his own?
Oh god the bullies 😭 I would personally climb into that TV screen and knock those little bastards off those bikes!! 🥊 Poor Forrest bleeding from his head but he ran those braces right off! My heart immediately thinks ‘yes, go on Forrest! you outrun the bastards’ but my parent brain is saying ‘his mother should be asking that Orthopaedic doctor for a refund. Those braces didn’t last long enough to straighten his back!’
One of the main stand out traits is that he is lacking of social understanding, he doesn’t understand the etiquette of social situations. He meets two presidents, he tells one of them he has to pee and when the second one jokes about seeing his bullet wound he thinks its a serious question and reveals his buttocks.
He is a very literal in everything he does as shown with his facial expression and rigid response during this iconic exchange.
Watching Forrest put his rifle together with such sheer determination is like watching William play with his Mega-blocks. The process is almost mechanical, they know how it came apart and they know how it goes together so could happily and easily repeat it numerous times.
That look of love and admiration in Forrest’s eyes whenever he see’s Jenny is magical although if William ever brought home a girl like Jenny then she would be buried under the patio à la Brookside.
Tom Hanks is hands down the only actor I feel could have played Forrest, nor because he is the actor that does play him but because he does it with such an innocence about him that I feel many men of Hanks age would struggle to pull off.
I know we are purely speculating but if Forrest does have autism it make perfect sense as to why he would do so well in the army, not that I would ever let William join but think about it…
A strict and immovable routine
Constant clear instruction
Every thing has a structure, your bed is made in a certain way. Your uniform has to be cleaned and worn in a specific way. Its ideal for those who relish a routine. Its no surprise Forrest made it to sergeant during his enlistment. In one scene he is seen to be wearing several medals.
Purple Heart – awarded to those wounded in battle.
The army good conduct medal – awarded after 1 year of faithful service during times of war (3 years if no current war)
National defence service medal – awarded for service during time of conflict.
Vietnam service medal – for service within that specific war.
Republic of Vietnam medal – awarded by the Vietnamese to foreign troops. FYI – it is engraved with a start date but no end date as they were made before the war was over.
Medal of honour – given to those who have performed distinguished acts of valour.
💕Bubba💕 He is such a brilliant friend, he immediately accepts Forrest for who he is, he helps him and genuinely cares for him. He plans to be friends forever. I hope William has a friend like Bubba when he’s older. Hell I wish I had a friend like that now. After the explosions in Vietnam Forrest tell himself that he needs to go back and save Bubba and despite stopping and saving his entire platoon he keeps going back oblivious to the danger because all he needed to do was get Bubba and he was locked on that mission so everything else didn’t matter. I know its not no where near the same but William has no sense of danger at all would walk through fire to get to his hearts desire… usually food related, highly likely a biscuit🍪
Another thing that stands out throughout the movie is how literal Forrest is and his lack of inner monologue.
Forrest shows many of the common traits of obsessive behaviour but the biggest stand out obsession is ping pong. He plays when no one will play with him. He sleeps with his paddle and ball. He didn’t want to change his paddle despite being offered a lot of money.
Some nights I have to pry my egg poacher out of Williams tiny death grip whilst he’s asleep.
He then becomes obsessive about running, he didn’t think about it and just kept going. Every dead end he reached he turned around and went in the other direction. In the film he was running after Jenny left and it could be that he was running away from the pain of her leaving but it seems that in my opinion he was running to fill the obsession gap that jenny had created. Filling the void so to speak. 3 years 2 months 14 days & 16 hours that is beyond obsessive! It’s not neurotypical behaviour.
I had never realised before but as Haley Joel Osment gets on the school bus and Forrest sits down he was keeping the promise he had just made to his son. He told him he would be waiting right there when he got back and that is exactly what he is doing. He is sitting there until the bus comes back. 😢
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 😊
Imagine a young boy at school being ridiculed by his peers because he doesn’t understand the thing they are being taught, they taunt him and call him Dumbo. Imagine this child is real and he has autism.
Now imagine that child has grown up… What kind of man do you see?
If you’ve met one person with autism, you’ve met one person with autism.
Dr. Stephen Shore
Autism is not one disorder, but a spectrum of disorders. All of which share symptoms but no individual on the spectrum has the same traits as another. I used to think autism was one thing but there arte so many things in the autism spectrum which I am guessing is the point. You are classed as autistic if you have any of these disorders. PDA (Click here to read more about this), Childhood Disintegrative Disorder, Pervasive Development Disorder, Asperger’s and then just Autism itself… People who had Rett Syndrome used to be classed as Autistic but as that was discovered to be caused by a mutation it has not been declassified from the spectrum.
Lets take Susan Boyle for example. Her debut album (despite the poorly chosen hashtag #Susanalbumparty) became the best selling album of all time. She is also the third person ever to reach n°1 in the UK & US charts twice in the same year. She has sold over 19 million albums; that makes her album platinum! She has a net worth of over 20 million. These are amazing achievements for someone who found fame on a talent show especially since she didn’t come in first place. Susan is an amazingly talented lady who happens to have autism.
Have you heard of Satoshi Tajiri? I will forgive you if not because you are probably not a massive nerd like me. Well Mr Tajiri created Pokemon. As a child he loved collecting bugs but as his town became more urban it proved difficult. His idea behind Pokemon was so children could experience the excitement he had when catching and collecting creatures. Pokemon has been on the go now for almost 25 years and continues to spawn games, cards and movies. Satoshi has a net worth of over 10 million and is often referred to as a genius. Personally I feel his greatest achievement is Pokemon Go which has helped many children and adults both on and off the spectrum become more sociable and explore the world around them. Satoshi himself also happens to have Autism.
Some of the most iconic movies of all time have been directed, produced, animated or written by this guy. This is Tim Burton. He brings us wonderful stories about outcasts, about wanting more, overcoming obstacles and beating the bullies. Tim worked for the institution that is Disney and was fired because his ideas were dark and in his own words his ‘animations looked like road kill’ In his vast career he has received an Emmy, a Golden globe and many other awards. He has a net worth of over 130 million but his greatest achievement is his family. Burton also has autism.
I’m guessing you have noticed a theme here… As frightening as your child having Autism may be it does not necessarily mean they will not be successful as adults. There are hundreds and thousands of people of there with ASD, in fact over 700,000 people in the UK have been diagnosed that’s 1 in every 100 people. Think of everyone you know or have met… it is more than likely you have met someone with Autism. Maybe that person is William? but if it’s not, This is William.
His greatest achievement to us so far is eating bread, independently walking almost 1 mile and climbing the stairs as if someone is chasing him. 🙈 We don’t know what his future holds and how far he will develop but the possibilities are endless. Sometimes its hard for us as his parents to think positively but we must remember to celebrate his achievements no matter how small they seem in comparison to other children his age. William is extraordinary and continues to surprise us every day.