Posted in Appointments

Hello

Its a Monday and when I was office based it used to be my favourite day of the week but not anymore, today feel like the most Monday-ist Monday ever! In the words of that Geldof prick and school shooter Brenda Spencer… ‘I don’t like Mondays.’

Today me got to meet our new health visitor; Louise. we all know how much we rated Sarah so she does have a lot to live up to. Louise has been the health visitor for our area for 15 years which is a long time for a health visitor to remain in the profession.

She turned up in full PPE as you would expect in todays current climate, Mask, goggles, gloves and full length plastic apron. Brilliant first impression… the neighbours must think we either stink or are getting fumigated 🦨🤣

She introduced herself and immediately jumped into questions about William, I must say the sceptic in me immediately though she hadn’t read his notes but she was also referring to him and wanted a thorough picture for herself of his capabilities and behaviours.

She confirmed she will be attending next Mondays meeting about his EHCP just like Sarah used to despite not receiving the official invitation.

Before I could even ask her about the Nappy Service she told me she had looked into our request and there was no leeway with him being under four, again this impressed me that she had looked into things that we had hit brick walls with without having to be asked. This one was on my little things I had written down during the months I was unable to speak with Sarah.

She has decided to put us through to a sleep specialist to help us hopefully get William to sleep easier and keep him asleep, this will involve lots of assessments and advice before potentially leading to medication such as melatonin.
Melatonin will help most kids fall to sleep but not all… The problem is some parents believe it will help a child who is procrastinating going to bed, stop a child waking up early or having nightmares but that isn’t the case. Melatonin is usually a natural hormone that our brains release in order to help us fall to sleep. Melatonin supplements are available easily online but they are NOT regulated and may do more harm than good. If you are considering Melatonin please ensure you speak to a professional before buying something that you cant be 100% sure of what’s in it. There are concerns that because melatonin is a hormone that it may effect your child’s development when they hit puberty and it is something we will need to consider deeply if we reach that stage.

I asked her to refer us to Wheelchair services so we can get a specialised buggy but she wasn’t sure if she was able to do so. she said she would be in touch about it and… within 2 hours of her leaving our house she was on the phone advising us of who we need to speak to as only two organisations can make that referral, Occupational health and Physiotherapy but William doesn’t need any of these 😕 Its not that he can’t walk. Far from it. Its when he does walk he will drop to the floor in a floppy state no matter where he is including roads, its the fact he has no danger awareness and a buggy at times he goes floppy or has a meltdown would prevent him from getting hurt. I’ve lost count of the amount of time Dave has had to stop cars because or child is laid in the street. 🚗 we have spoken to our G.P surgery and have a telephone consultation booked next week for the doctor to decide if its appropriate for him to refer us 🙄

I’m not sure if we mentioned the questionnaires that are sent out prior to a child’s development check up but they have always been brutal to us. They focus on what children should be doing for their age group and as we are all aware William isn’t at his age group so it was a lot of negatives for us. These are called the Ages & stages questionnaires and unless I am mistaken are to identify children who may have developmental disabilities.
He will now be assessed based on the Nelson scale which focuses on the age he is at for each area rather than where he should be for his actual age. I think this will be much easier to help us understand the next steps in his development. We see little improvements and new achievements but we find that the standard ages and stages just doesn’t celebrate or include those and will continue to score zeros despite developing slowly at his own pace.

On the plus she has weighed and measured him and he is in the 25th percentile which is where he has been all along. This made me feel so much better about his eating habits as I do worry he may be underweight but apparently he is perfectly healthy… which is always good to hear.

I think because Sarah was all we had know for 4 years we held her on a pedestal and it was unfair to presume Louise would be inferior to her. She has already made a brilliant first impression but I guess I’m just skeptical due to the amount of agencies who have failed to uphold their promises but Louise seems really promising and honest and I guess that’s all we can ask for. She will only be with us until William starts school in a years time in which the school support will take over… if we get in but thats a whole other worry for another day.

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

Posted in Emotions

It’s in the DNA… Pt 2

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!

Posted in Emotions

It’s in the DNA

Males inherit the X chromosome from their mothers, the Y from their fathers.

Williams results from the genetics testing came today and its a bit of a mouthful but… there was a variation from the normal pattern wirh interstitial hemixygous copy number gain Xp22.33. The test states there is additional genetic material.

Chromosome 22 is the second smallest human chromosome (21 is the smallest) including more than 51 million DNA sectors (they’re in pairs) and represent between 1.5 and 2% of the total DNA in cells.

There is no defined link between this and autism but there are a few case studies referring to it and those with learning difficulties but not enough research has been carried out. Its is classed medically as having uncertain clinical significance.

If it has come back as nothing detected that would have been shit but manageable.

If something would have been detected on his Y chromosome I wouldn’t have blamed Dave but I am sat here now blaming myself. After all the X chromosome came from me.

Have I done this to him? To us? The paediatrician will be booking in a consultation to discuss the results in more detail and establish if further investigations are needed but now I’m terrified of what they will say… will further investigation point the finger at me even more?

I just feel like I’m back at the beginning of our journey, like all the progress we’ve made in our acceptance and grieving over a child we thought we would have hasn’t mattered and I’m back to looking at him and crying because this could all be down to me.

Posted in Emotions

Understanding and accepting

Before acceptance must come understanding.

People often struggle to differentiate between a child with autism and a child who is being naughty.

As a parent who suffers with anxiety it is very difficult to go to certain places and deal with other people who don’t know William like we do.

Something as simple as a journey on a bus can set me into a tailspin, a small journey can lead to an argument due to the fact other passengers look at William as see what they deem as an ablebodied 3 year old in stroller taking up a space they feel someone else needs more. Not all disabilities are visible and what give you the right to assume!

A trip to a supermarket can lead to a full meltdown due to the hustle and bustle of different people, a different environment, bright lights and loud noises. One the rare occasions he will walk, he will often end up laid on floor and go floppy because he can’t handle the stimulation and lack of familiar surroundings and comfort.
This is not a toddler having a tantrum because he can’t get sweets or doesn’t want to walk, its because he is in pain.

When we go to a restaurant, cafe or bar he will beeline for any food he can see, we will stop him before he takes it but it can lead to awkward conversations, dirty looks and whispered remarks.
This isn’t because he isn’t fed at home or because he is rude. This is because food is such a high motivator for him and that the fact it doesn’t belong to him doesn’t even register.

I shouldn’t have to apologise for my son for being himself but I find it becomes a more frequent occurrence as time goes on. I shouldn’t have to explain why he is the way he is, there should be a wider understanding of the autism spectrum leading to acceptance.

I truly believe that autism awareness and understanding should be educated in schools so that future generations don’t make the same mistakes and assumptions.
There are no definitive figures of those with autism as no record or register is kept but based on recent surveys 1 out of 100 has autism.


Think of the children in your child’s year at school, think of the children who you went to school with. I wish I had been more aware, more educated and a better person.

I want that for the future, for children like William and for parents like us who often feel we should apologise on behalf of our son when maybe, just maybe they should be apologising to us for their small mindedness.

Much love, The Buckley’s Xxx

Posted in Appointments, autism and covid19

PCP Meeting… Covid-19 edition

Just a little reminder of how happy Big nan is now she gets to see William xx

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 independently in 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.

Posted in Reviews

Autism on the big screen – part one

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 🤣)

Forrest Gump

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

Mrs Gump

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
  • Uniform

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. 😢

Posted in Reviews

BBC – The A word – Season two review

Episode 1 throws you straight into a meltdown. Joe once again has put himself into danger and climbed the school roof.

I’m autistic, I’m autistic, I’m autistic. Nobody wants that.

Joe Hughes. The A Word.

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. 💙

Posted in autism and covid19, Autism In The News

EHCP Announcement part 2

Remember when I last posted about the ‘temporary’ suspension to EHCP’s?
Remember how I worried that it wouldn’t temporary?

I hate to say I told you so but the suspension has now been extended further until 30th June… This could be extended even further closer to the time.


In case you are unaware an EHCP is an Education, Health & Care Plan which is a legally binding document that is written by the Local Authority (with parental and other professionals help) regarding a child’s additional educational and care needs. The plan outlines the type of support or intervention that the child will receive to ensure that their needs are being met.

Due to the coronavirus pandemic I did understand why this had been placed on hold due to the changes which schools were facing in regards to social distancing and how many staff and pupils in a room etc however June 1st is the day they have been pushing for kids to go back to school but with the latest announcement it seems they didn’t mean all kids, they didn’t mean the kids that need additional support.

“Make no mistake, I want the UK to be the best place in the world to educate your child and make the most of people’s talents.

Gavin Williamson, Education Secretary

This was taken from a speech Mr Williamson gave about his plans for post-Brexit education. He focus on improving technical education and welcoming international students, what Gavin missed out in his little speech was education for the already under funded and overlooked SEN children.

The new announcement is disappointing but not surprising.

Instead of Mr Williams sharing any of this to his twitter account instead he shared this…

‘Hello NSPCC? I would like to report countrywide neglect of those with special educational needs.’

I suppose we will have to wait until the end of June to see if this suspension of pivotal EHCPs is lifted, I for one will not be holding my breath.