Posted in Emotions

Two faced

these are the faces of autism

and so are these…

It took me a long time to be able to tell people that our child has special needs, that our child has a developmental delay or that I look like shit because I was up until 4am just laid net to him on his bedroom floor.
There is no shame in having a child with autism or a child that hasn’t hit their milestones when their peers have but there seems seems to be this stigma around it or at least that’s how we felt.
I share many stories about William (with any one who will listen) and always explain he has additional needs but i’m not sure why. Why do people need to know? why do we as parents feel the need to explain their behaviours? Does Tom, Dick or Harry need to know?
I suppose any parent in our position will tell you that everyone on the outside of this not so elite circle will tell you that they know a person with autism and they’re fine or they know someone who was non verbal and now they speak all the time etc etc etc… blah blah blah

Autism is a spectrum which means it covers a range of conditions so although autistic people share certain difficulties not one person who has autism is the same as another who has it. This means that they need different levels of support. Most people on the autism spectrum will learn and develop but only with the right sort of support which if you have read our previous posts can be difficult to get.

Today was a difficult day. It started at about 1am in which William was awake and having a full meltdown so I did my mental check list

  1. Does his bum need changing?
  2. Is he thirsty?
  3. Is there something in his bed that he doesn’t like?
  4. Does he want a cuddle?
  5. Does he have a temperature?

At 1am the answer to all of these was a definite no. Number 2 resulted in him shoving his juice bottle into the side of my head and number 4 resulted in him hitting and biting me. I tried everything to calm him and by 4am we were laid on his bedroom floor just staring at each other. I couldn’t touch him and I wasn’t allowed to make any noise but he was at peace for the first time in hours so the back pain this morning is most definitely worth it.

Fast forward to a very sleep deprived mum this today and i’m not sure who has cried more. Me or William?

I understand this is a little bit of a ranty post but I just like to speak or when that’s not possible type and those that know us personally understand how angry I get when i’ve not slept πŸ’€

William is currently in his room destroying everything that is still standing so i’m hoping he will soon tire himself out but that’s as likely as us winning the euromillions!

I refer to William quite often as a psychopath... when he hits me and laughs, then I tell him off so he fake cries and then laughs again... honestly he is such a character and a master manipulator; when Dave wakes up he will start crying. Dave runs in 'is he ok?' 'how long has he been like this?' he will scoop him up and cuddle him and William will just happily lay there with him. I can't help but feel a little jealous. They have a beautiful relationship and it stings a little that William doesn't have that kind of bond with me. He never hits Dave. Never bites him. Its it because I am the one that is here more? and his time with his Dad is more precious to him?

I sometimes think it may be because I struggled to bond as well with him straight away. As many of you are aware it took almost 2 years for me to admit and be diagnosed with postnatal depression. I loved William before he had even entered this world but struggled to adjust to such big changes in my life.
I went from working full time and my life been my job to been on maternity and finding out my office was shutting down. Then as time went on I started to realise William wasn't like children his age. It was tough and I think I hid it well for quite some time but did William pick up on this?

I think Family life is never what people picture it is. Movies, TV, books and social media put unrealistic expectations on people to have a perfect life and it has taken me a long time to realise there is no such thing! My living room is a mess and covered in dog hair and toddler snot so fuck you Mrs Hinch with your baby, dog and immaculate house! Although I do love the products she uses πŸ™‚
Fuck you Kylie Jenner with your washboard abs 4 weeks after giving birth! In fact you know what, Fuck you Kevin Systrom & Mike Krieger for creating a platform in which pictures are worth a thousand words and every single word is a fucking lie.

Posted in Appointments, Dads Journey, PCP & TAF Meetings

TAF Meeting… Part 3

Dave here πŸ‘‹πŸ» I was trusted to attend a meeting solo as Marie had work commitments. This was a huge deal as she is always the one with the notebook who asks all the questions but I’m still alive so I guess I did well… 🀞🏻

Firsty the wife loves a good snapchat filter but never smiles in any photo. She says she has resting bitch face. I say she is just a massive poser.

Secondly but more importantly can we just address the fact that William looks cute as hell. I do love a good dickie bow on him.

This picture was taken before went out for Big Nans 90th birthday party. 90!!! When you think of a 90 year old, you would never picture Big Nan. She acts younger than us sometimes and is so full of energy. She once cut through a small tree using a saw that only had about 3 teeth!



It was a great get together but the older generation don’t seem to understand what is wrong with William and asked thing like ‘will he get better?’ which is heartbreaking because the answer is ‘no’ but at the same time he isn’t poorly so the question isn’t relevant. The understanding we have now about ASD wasn’t available to them and is still a growing knowledgebase.

FYI – the consent forms for the ASD waiting list have been signed so we are just waiting for acceptance now but will keep you updated

I won’t lie and tell you I was looking forward to a solo meeting because I really wasn’t. I was nervous and worried I would say the wrong thing or not ask the right questions. Marie is always really prepared and has a notebook full of notes from every single meeting we have had so far. True to form she had made notes for me to guide me with questions and made sure I went armed with the notebook so I could update her as soon as I left.

As the meeting was at 9am getting to the nursery with the boy in tow in a buggy was difficult. It was raining which didn’t help the public transport situation and I struggled to get on a bus and had to wait for a third bus in order to be able to fit on one… after the second one went passed I was very grateful Marie wasn’t there as she would have been what I like to call ‘a bitch’ and I mean that with love but when she is stressed she gets angry and can be mean 😒 a bit like the incredible hulk… you wouldn’t like her when she’s angry.

The usual crew were all in attendance and Sarah our health visitor was late as usual. Health visitors are so overworked and underpaid that I am shocked she has time to attend at all and we are always grateful.

Let’s get the bullshit out the way first. There is apparently only an 18 month wait list for the ASD panel πŸ€₯ they’ve hired new staff and it may be even less…
So firstly they haven’t hired new staff… they have connected with a company called Healios who are an online based company who allow people to connect with health professionals via video link. Since they have been on board the waiting list has reduced from 3 years to 2 years and 4 months. This is based on first appointments given to parents in our online support group and their referral date so unless they are recruiting their own staff as well I can’t see it reducing that much more.
Apparently a long wait is good at Williams age as diagnosis’ can be seen as a label and they don’t like to label younger children etc etc etc… I understand that but surely it should be done before school? and as it stands now it won’t be and it worries us that his needs may not be met without it.

Going forward William will be set targets by speech and language for us all to work together on to help him develop and improve but until then we aren’t fully sure what we are aiming for.
Lisa from Early Years Development will continue to assess his funding and ensure he has the right amount of support each term at nursery.

I also gained a little insight into what will happen next with the ASD panel. This is after our long wait… we will get a large questionnaire which will ask the same medical kind of questions Marie gets asked at every new meeting about her pregnancy and labour etc and about Williams behaviours.
They will then want to speak to us about day to day life and then in a separate session will observe William. I worry that if this is online that they won’t be able to get him to cooperate and we would have to wait even longer.
In some instances a diagnosis has been given then and there which would be great for us as everyone has said all along he has autism and a severe developmental delay BUT if they can’t do that they will do a ‘watch and wait’ this puts a stopper on it all for 6 to 12 months to see if anything changes. I’m not going to sugar coat it but I would be super pissed if we waited almost 2 and a half years to be told we needed to wait another year!

The paediatrician – she wasn’t at the meeting. Thank fuck.
Basically all parties had presumed she would have referred the boy to Physiotherapy due to his movement and the way he holds himself. When I told Marie this she was raging. The woman deffinately rubbed her up the wrong way and told me off. She was not a people person and if you’re good at your job it wouldn’t matter but apparently she isn’t either! We will chase this when we get our next appointment through. She did say it may be with another paediatrician so here’s hoping 🀞🏻

Check out this adorable moment!

William has started sorting his toys and will collect certain types and compile them.

Here he is taking all his trains to the dog πŸ•

In our last TAF meeting it was devastating to hear that the boy was only at the age of 9-11 months developmentally and as you may have read it hit me really hard and it took a while to get my head around things and I would love to say I have done this fully but there are still some things I struggle with so I had barely slept the night before thinking there would be no improvement (we had seem some but it hard to trust ourselves if that makes sense) and then I would have to break the news to Marie.
so…
He is still in the 9 to 11 month development bracket but is slowly emerging into the up to 20 month bracket. He isn’t there yet but there had been no improvement at all in the last meeting so this to us was amazing! and it’s rare we get good news about his development so it was wonderful to hear. Even slow progress is better than no progress.

There was a lot of discussion about an EHCP and his future education but since the wife knows more about that than I do I will let her fill you in at some point.

‘You are already doing a great job at home to help’

This a quote by from Lisa from Early Years Development. It brought a tear to my eye and when Marie found out she cried happy tears.

I bet you are all totally impressed with my note taking skills, I had a great way to make sure I documented everything to be able to relay info… I had my phone recording in my pocket 🀫

Posted in Events & Holidays

Happy birthday Harry!

Today was a great day! Today was Harry’s birthday party; the first party William has been invited to. I do worry that he won’t get many invites as he gets older due to his antisocial behaviour and his tendency to become overwhelmed.

I’m not going to lie to you as that isn’t what this blog is about. As you can guess today like most days started out badly. William had smeared the contents of his nappy everywhere 🀒 and when I tried to change him he repeatedly hit me with shitty hands and when I tried to stop him he bit me. I had to wake up David to help… not what he needed after a night shift but needs must😴 Breakfast wasn’t eaten, well not by William anyway. Rusty thoroughly enjoyed his toast this morning and William enjoyed trying to take a chunk out of my leg when I dared to take his plate away.

Once we were out of the house things took a much better turn. William was calm and happy which is always my favourite version of him. Don’t get me wrong I love every version of him but this one is just amazing. The happiness in his face is one of the purest things I have ever seen and even now when I hear his little laugh I well up a bit.

The party itself was at Hull Community Church which I must say was a brilliant venue. They have an amazing play area in the back which is like a imagination role play wonderland. It was a bit overwhelming for William who chose to be sat with me in the hall the entire time but it was amazing watching all the kids have a ball.

I worry about going to places like this with William incase parents make comments about him or he goes into full meltdown mode and they judge me for having a ‘naughty’ child but they were great and no one made us feel uncomfortable which for people that don’t know us is wonderful especially when we’ve learnt people close to us aren’t always that nice.

On his good days William has a big attachment to food. On his bad days he won’t eat at all but today wasn’t a bad day. As soon as the buffet was out he was there like a shot wanting popcorn. Thankfully Danielle and Simon have spent enough time with us to understand his attachment and happily gave him a plate full of popcorn.

I learnt today that William isn’t fond of the loudness that comes with lots of children who are in full blown party mode but he handled it so well. He rubbed his ears a lot but just cuddled up into my lap until they went back to play.

He even chose to eat a sandwich! Which is a massive deal for William as he never touches bread as he can’t handle the texture but a cheeky egg mayo sandwich called out to him and he just grabbed it and wolfed it down… well not just one but 3! I nearly cried. Something so silly as an egg sandwich brought a little tear to my eye.

Toward the end as he was getting tired he became grouchy and when I had to put his shoes back on so that we could leave he started hitting himself but thankfully this only lasted about 30 seconds. 🀞

I don’t know if any of you have seen the original Series of Unfortunate Events with Jim Carey but at one point William was hanging from the dining tables by his teeth doing a Sunny Baudelaire.
Not many parents have the pleasure of telling their child to stop eating the table. 🀣 We also narrowly avoided him biting into a balloon. 🎈

Once the party was over we went back to theirs to watch Harry open his presents and other than munching on a few envelopes William was content watching him and he enjoyed the rest of our day relaxing and playing with Harry’s trains. He is very comfortable with their little family which makes me feel less worried about his future and the level of understanding people have.

Today was definitely a really good day😊