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 autism and covid19

Hello reality…

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.

My forever ❤❤❤

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 😭

Catch up with you all soon. x

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.

Posted in autism and covid19, Autism In The News

EHCP Announcement

Gavin Williamson our current Secretary of State for Education has made a ‘temporary’ amendment in regards to EHCPs. In my basic understanding an EHCP is a document which outlines the needs a child has in regards to their education and the local authority must adhere to it.

This amendment in laments terms basically means that EHCPs are now pretty much null and void. It’s completely understandable that the government would do something like this to protect themselves in such unprecedented times.

Most parents will understand this amendment as it’s not reasonably possible for an EHCP to be followed to the letter when schools are closed to the majority and social distancing needs to be enforced.

As you can imagine, me being the neurotic mess I am immediately panicked… William doesn’t have his in place yet, what if we can’t get one? He can’t get into a school that will meet his needs. He will fall further and further behind… the whirlwind in my mind went on and on 🌪

I reached out to Lisa who is the SENCO for early years to find out if and how this would affect us. Luckily new applications are still being accepted which has put my mind at ease (a little) as without one we can not apply to go to our school of choice which we are almost agreed upon. 🤣

Our PCP meeting is still due to take place over email or Skype or in some other technological way 👩‍💻 which is brilliant as we can get the ball rolling despite the current situation.

My main worry is the ‘temporary’ part of this announcement. When it’s safe to leave the house and get back to what will be put new normal, will EHCPs be enforceable again? Or will there be another reason to suspend them.

I worry about what’s going to happen in the future for the children with special needs. The world is only just starting to understand ASD and I worry this will set us as parents of these children back in our fight to get out children the best possible care.

That smile though…
Makes our recent sleepless nights worth every second!

William himself has had some amazing days recently. He’s spent a lot of time in the garden and engaging with our neighbours especially when food is involved 🍲 honestly he’s like a little zombie trying to get brains 🧟‍♂️

After the good days there is always a few bad. He’s not eating like he normally does. He doesn’t want to spend time with me… which is understandable but he doesn’t even want to spend time with Rusty 🐕 which is almost unheard of.

The nights he wont sleep and cant be settled are upon us. I feel so useless on these nights and could quite often sit and cry with him… pathetic I know.

Then the (disgusting) icing on the cake… this morning he was on top form and spread poo all over his room and himself. He was literally as happy as a pig in shit. 🐖 Then comes the trauma of having to hose him down and clean poo off his face and every other surface. It was like that scene in psycho. 🔪🚿

The a$$hole club
Bonding on the few days they have something in common

Posted in autism and covid19, Emotions

Just the two of us

You and I…

There are a few words everyone single person in the world is fed up of hearing right now so I will just get them out of the way…
* Coronavirus
* Quarantine
* Lockdown
* Furlough

Not many people think like me but if you read my last post you will be aware that I rely on my job for a little break; a cheeky three day holiday in which I am not Mummy but I am Marie and Marie never has snot or other bodily fluids on her clothes, Marie very rarely has to speak to her colleagues in baby-talk and she can have a conversation which doesn’t end up getting hit or bitten. I love been a mom but I need that time to be Marie… Sometimes I forget who she is.

I know it was a risky thing to want but my goal was to stay in my office as long as possible, to maintain my routine (and in turn Williams) but also to keep hold of my sanity. I cried when I was told I would be needed to work from home, not just little tears but load messy ones. 😭

Dave tried really hard to let me work in peace in my little office/bedroom but it proved a little too difficult to forget I was there, especially during a particularly bad nappy explosion which I would have usually avoided had I been at work.

I made it through two shifts, The Wednesday of the first week and the Monday of the second. I’m not going to lie I probably did more work on those days that I would have done at the office because there were no distractions, Head phones on, blinds open and frantically typing away. On the Monday an email came out stating furloughs were on the cards and would be discussed with our line manager that day who would be in touch… Hours felt like days and then the call came. I was being furloughed and would not be allowed to work until further notice… this was indefinitely with no end date in sight.
From a business perspective it makes perfect sense and I knew I would be one of the first on the list because lets face it. How much training can I do on my own in my bedroom. I had loads of material to work on but that isn’t a necessity. My complete access was revoked within 2 hours… ‘HELLO!!! I STILL WORK THERE!!!’ I can’t even sign into my laptop to write on here or play bloody solitaire. I can’t do anything… indefinitely. My anxiety kicked in; I didn’t finish my last presentation! would I ever finish it? It was really good, or I think it was but I can’t even check!

I’m still getting paid which is amazing as it means I can still provide for my little family but it does worry me that if this doesn’t end soon will all of us on furlough be first on the chopping block for redundancies… As HR put it: My role was identified as one in which the work can be absorbed by other areas of the business… what if they realise this can be done permanently? Now I have this little nagging feeling that I made a mistake when I changed my contract even though it made me eligible for my new role and I love my job but the little niggle is still there and i know it is completely irrational. I mean I know my work didn’t release this virus to get rid of me but that doesn’t stop my brain thinking all sorts 😷

William has been on top form since nursery closed its doors about three weeks ago. If you have read any of our previous blogs you will be well aware we are all slaves to his routine because he can not handle any changes. Plus lets add Chicken Pox to the mix because things aren’t difficult enough for him!!!

One of the first things that happens when something changes in his routine is that he stops eating and since food is such a high motivator for him that it is always a massive concern to us. He usually goes one or two days and will not eat a single thing, no matter how many of his favourite things we try to bribe him with.
Popcorn – NO
Cake – NO
Sprouts – NO
Chips – NO
Mummy’s flesh – ALWAYS!

After a while he will start picking at small amounts. The dog loves these days as William will bring food to his mouth but then throw it behind him or just shove the full plate to the floor. Rusty eats so well on these days 🐕

The following day he will be ravenous and will demolish adult sized portions and then start on mine and Dave’s too. Occasionally the dogs and almost always any bits of paper he can get his hands (or should I say teeth) on. Unfortunately his poo doesn’t come gift wrapped like I so often joke.

Speaking of shit… Williams Neurodevelopmental paediatrician says its not uncommon for children with autism to have ‘lazy’ bowels which makes sense as he has never been regular but when it finally comes its usually uncontrollable and smeared all over his bedroom 💩
He doesn’t even care when he has been (the phrase happy as a pig in shit has never been so true 🐷) so it often goes unnoticed until the smell hits us 🤮 however there has been an exception recently… during a nappy change he crawled onto my lap for a cuddle or so i thought. He giggled and pooed all over me!!!

The other day on one of his no food days William decided he didn’t want to be anywhere near me all day. He stayed in the same spot on the sofa only moving to lift his arm for his juice. He didn’t sleep, he just laid there for hours staring into space. after a few hours he crawled on to my lap and curled up like one of those yappy little Yorkshire terrier type dogs. It was cute and I felt privileged he had come to me for some comfort. I welled up a little and stroked his hair and in return he threw up all over both of us and then for good measure all over the rug too 🤮 Every parent has to deal with messy incidents but William absolutely detests getting s bath or shower so it always results in more trauma for him… and us.

As time has passed he understands what no means but choose not to listen. He will stop what he’s doing, pretend to do something else and then decided to do it anyway. Last Thursday he was doing everything he usually knows not to, The things that could result in him getting hurt.
He climbed on top of the TV stand and tried to pull the TV over… “William No!”
He climbed the dining table and threw the contents to the floor… “William No!”
He rattled all the kitchen cupboards. Purposefully spilt his drink on the floor. Fed the dog his breakfast. Threw the plate on the floor. Hit me when he realised he had no food left and then preceded to flip his table and chair.
“No!”
“No!”
“No!”
After a few hours I had to lock myself in the bathroom to get away from my 3 year old and have a cry… He cried the entire time I was in there whilst rattling the door handle #badmom
I just needed a few minuets to let it out away from him and compose myself as he doesn’t understand when I’m upset or frustrated.

He knows I shouldn’t be at home, He knows he should be at nursery and he knows when he hasn’t seen Big Nanna. I don’t know if he will get used to this craziness and I don’t know if I want him to? I’m praying this ends soon. If he gets used to it things will be easier for us but then we will have the same battle on our hands if things get back to normal… not if! WHEN!! WHEN THINGS GET BACK TO NORMAL!

We call Big Nanna every day so he can hear her voice and she can hear him laugh and chunter…She sings round and round the garden to him and I do the actions. It adds a small amount of normality and routine to our long days but it makes me sad. He has a certain smile that he saves only for her and I miss seeing it. I miss seeing Nan’s face when he immediately leads her to the biscuit barrel or the mischief in his face when he finds both doilies in her living room and places them together (usually on the floor) The bond they have is so special and if i’m honest it makes me a little jealous sometimes but I wouldn’t change it for the world.

I worry about Williams development now more than ever as he has been showing slow but wonderful improvements recently after a lengthy period of no change or even regression and I panic in case this drastic change causes him to regress again and it was devastating last time but he is slowly edging into the up to twenty months bracket and I really want him to get there. No movement is better than moving backwards but only time will tell.
Will this be over in time for his PCP meeting in May. They told us it was a really important meeting to get his EHCP in place ready to start applying for schools in winter. Will this happen? What if because of this virus we can’t have our meeting, meaning he doesn’t have an EHCP, meaning we can’t get him into a school that would be suitable for his needs? Lisa (early years team) called to check we were OK and asked me to call her if I needed anything. Why didn’t I ask her these questions? If there is no end in sight by middle of April I will call her.
I also need to chase his blood tests and genetics testing as we never heard anything and we are unlikely to do so now. Also no follow up appointment with his Neurodevelopmental paediatrician. Its crazy because its not essential healthcare but it is to my boy! it is to me! I feel utterly selfish thinking about these things but if I don’t who will?