Posted in Events & Holidays

Family Holiday

As many of you will be aware we have recently been on a big family holiday for the first time in 2 years and as you can imagine things with William have changed greatly since our last vacation.
I love getting together with our family but as anyone will be aware it can be stressful; throw an autistic child in the mix and it can be nuclear which meant my stress levels peaked before we had even left the house.
‘What can he cope without?’
‘What if he smears whilst we are there?’
‘What if he cant handle it being around so many people?’

I know it sounds a little crazy as my mum and dad were there and he loves them both so much and my dad will babysit when I was office based, my sister and niece were there and he loves his Auntie Nellen (or H to everyone else, the letter H doesn’t exist in Kingston upon Ull. ⚙Yes the cog used to be our logo 🙄) Big nanna came for the first time and we all know what an amazing bond they have and finally his Uncle Jim and lets face it unless he has to change a nappy he is amazing with him (if we ignore the fact he’s banged Williams head more times than Rick Allen has banged his drums🥁)

Here are some of my favourite pictures from the week 🥰🥰🥰

Picture 1 – We were delighted to be able to borrow a freeloader carrier which personally is amazing for parents of children with special needs to be able to safely carry them to areas you would not be able to get to with a stroller or wheelchair. Unlike a baby carrier it has a seat on an reinforced hinge which means that when your child sits on it the straps are not brutally cutting into your flesh due to the weight of your lump child. Its a big expense as they are imported from America but I would honestly say they are definitely worth it and we will eventually be looking at getting one of our own 💸💸💸
Click here to check them out

Picture 2 – We’ve discussed on previous posts about Williams refusal to walk and lack of awareness when it comes to roads. Here is a prime example. We had walked for less than 2 minutes and William collapsed in the road. He makes himself go floppy so he is impossible to grab onto and will just lay wherever he has fallen an believe me he is more slippery than a bar of soap and his limbs just slide through your hands. 🧼

Picture 3 – William love bubbles but hates bath time 🛁 so after a traumatic bath which was much needed as he decided to sit in the stream we left all the bubbles in the tub for him to lay and play in. Dave took so many photos and Big Nanna sat in a chair watching him have the time of his life and I’m so glad she got to see that as she had witnessed a meltdown at the beginning of the week which I will talk about later.

Picture 4 – Dave loves the walks up in the dales and has climbed the peaks and everything… Me; no so much. My version of exercise is walking to fridge or picking up my phone to order on just eat. 🍕 We decided to spend one of our days in our little 3 person bubble and went to explore the village. Whilst sat with his dad on the bank of a deep stream William lost a one of his Wellies over the edge and Dave had to go in and fetch it… as you can see no shits were given by William at all and he is actually calmly sat on grass which is a big improvement.

Picture 5 – Dave referred to this table as a 70’s party table due to its mirrored surface. William had his first little holiday romance… with himself. It’s like he discovered his reflection for the first time and spent a good amount of his time kissing his reflection 😘 William doesn’t quite understand what a kiss is and his version is coming at your mouth with his mouth open and there is always a risk you will get bitten but its worth it, I would take a million bites for one kiss.

Picture 6 – He loved the streams that ran though the village and we went in for splashes at every opportunity. We learnt a few things on these mini adventures. My wellies had holes in (they were about 10 years old), William loves the running water and decided to wade as far as we would let him, to the point the water was over his wellies so I wasn’t the only one with wet feet and finally that he will literally just sit anywhere including in said stream 😂 It made the short walk back to cottage much longer, wetter and colder.

William had one meltdown whilst we were away and unfortunately it was the worst we have experienced so far. He went red and started screaming and repeatedly hitting himself in the face with both his hands clenched together 😢 It hurts me to see him so distressed however I now know not to try and restrain him as it makes it much worse.
Big nanna has never experienced a full meltdown and it really frightened her. I could see it in her eyes and asking me to stop him hitting himself and asking me what was wrong and to be honest I couldn’t work it out. He has been to toilet, he had eaten well and nothing he hadn’t eaten before, he had his favourite toys and Hey Duggee was on the TV. I don’t know if it was the new environment or he just wasn’t feeling himself but it really frightened her which upset me alot.

I think being told about the way someone reacts due to their additional needs is very different from seeing it first hand.
Autism in a spectrum which is so vast and complicated it is difficult for people to understand, even those who are close to someone with ASD don’t fully understand the possibilities or the limitiations and it can make explaining them exhausting 🥱

Some things never change…

The journey home was uneventful as you can see from the above picture the journey home was uneventful, either that or they just didn’t think much to mine and H’s music choices 🎶

William missed his friends back home and Rusty which was evident because as soon as he saw each of them he was so happy. He practically ran straight to our next door neighbours for cuddles, my pets and child are all starting to think they live there 😂 but in all seriousness I actually love it. He has an amazing bond with the full family and I trust the girls to take him to park and be safe with him and it takes alot for me let anyone do that. He was sat on the roundabout in park and quietly ate his packed lunch as it went round when some older kids (secondary school) asked one of the girls to make him move and she told them no, he has problems and he’s happy where he is and they just left. She has more balls than I think I would have done.

One of our other neighbours got back from their holidays today and as you can see William missed them that much he sat in their car and made himself comfortable.
GTA eat your heart out 🚗

As always much love, The Buckleys 😘

Posted in Emotions

Alone

In the words of Akon ‘I am so Lonely’ or in words of puppet Kim Jong Il ‘I’m So RonerySo ronery. So ronery and sadry arone’

Having a baby is very misleading; when the baby is born everyone wants to know you. they visit, bring gifts and make promises they don’t intend to keep.
As your baby gets older people start to fade away and are only occasionally spotted at birthdays or christmas time.
People stop asking you if you want to meet up for a coffee or lunch because you would have to bring the baby or because you have said no a few times due to breastfeeding or lack of childcare.

Your circle continuously gets smaller as your child gets bigger.

If your child has special needs this circle practically becomes a dot, a little bit like a reversed ripple.

I’m not sure why this happens but slowly even the people who had previously part of your lives now even fail to ask about your child on the rare occasions they speak to you.
I’m not sure if its because they don’t know how to react when you say ‘Not good…’ or because they are scared the will say the wrong thing like referring to a meltdown as a tantrum or saying things like how all children do that and will grow out of it etc. I would accept things like that as I would happily share Williams story and experiences with everyone and educate people about ASD, GDD & SPD so that those parents that come after me have a slightly larger dot.

It’s a very lonely life as a parent of a special needs child.
It becomes harder to spend time with your partner and you begin to realise why separation rates are higher for parents in our situation. Its hard to maintain that spark especially when you both work opposite shifts for childcare reasons and it can be near on impossible to get a sitter (not even mentioning COVID) due to William’s behavior which can be challenging to say the least.

Exhibit A.
That isn’t chocolate! 🤮

I think its sad. Actually no, that’s isn’t right. I think it’s disappointing. I know it’s disappointing that we lose what we thought would be our forever circle.
People who were strangers a year or two ago became those we confide in not because we upgraded or chose to leave people behind but because they understand that aching pit of despair we often feel.

I know when William goes to school we will meet parent in situations similar to ourselves and extend our circle. I’m not saying that we will bond with all his classmates parents but even one or two would be a bonus.

As always I’m not sure what my motivation was for this post but wanted other parents to know that it’s not just them and we are here for you to be part of your circles if you need us 😘

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 In The News

Back to the pound 🐶

I have always judged people who get a puppy or dog and decide to take it back to the pound. I am completely aware there are 100% valid reasons in some cases but it always devastates me. You promised that little furry guy a new home, a good life and to love them forever…

So you can completely understand how I felt when I read a news article about a woman called Myka Stauffer. Well it turns out Myka is relatively famous but I had never heard of her. She is a YouTube influencer with 715k subscribers although I am guessing this has dipped substantially recently with #CancelMykaStauffer trending on Twitter.

Until very recently Myka and her husband James were parents to 5 wonderful children; 4 biological children and 1 which was adopted from China, his name is Huxley. As of yesterday they have been in the news because they have chosen to re-home their adoptive child because he has autism and behavioural difficulties.

It pained me to give her views which inadvertently lines her pockets but I wanted to understand who these people were before I threw my 2 pence in.

There are numerous videos about Huxley before he was even Huxley if that makes sense and the videos on average have 75k views. Three years ago she made a video discussing how much she earns from YouTube but I’m not going to lie I could not be bothered to listen to it… I have a good paperback on the go and didn’t want to waste any more time on her than needed so I went onto a site that details the net worth of YouTube channels. Her site is worth $167k 💰 and her family’s daily vlog site is worth $33k 💰and the videos of her journey with Huxley have definitely contributed to that in a big way. Even the video uploaded about ‘re-homing’ Huxley will be earning her money which is disgusting. It currently has almost 1m views. No doubt her highest viewed video to date.
If its about the views for them maybe she could give up one of her biological children next and hit 2 mil!!!
She used Huxley to get money before she even officially had him. She asked her subscribers to partake in fundraiser for him by donating $5 for a jigsaw piece. It was a 1000 piece jigsaw and was the first image she would reveal of Huxley… Well I couldn’t find the link for the fundraiser 😲 but when I looked on some forums I found out that apparently It was just a link to send money directly into Myka’s paypal account.

She did state she would the names of everyone who donates in a baby book for when he was older… Hmm wonder what happened to that! 😡

My first thought when stalking her YouTube channel was that her videos are not my kind of thing, they portray her as a perfect parent, wife and housekeeper which is unattainable and puts pressure on her subscribers to be like that.
I love Mrs Hinch but in a previous post I’m pretty sure I told her to go and fuck herself on one of my bad days. Myka seems to have a very high opinion of herself and from the posts she has shared not relating to Huxley I feel like she is what I like to call a MOMsplainer (another parent that talks to you as if you are neglecting your child, whether it’s on breast feeding, milestones or a vegan diet, they will give you unsolicited bias advice on anything) and I don’t have time for that so she is most definitely someone who’s videos I usually wouldn’t give the time of day.

My second thought is that if she is telling the truth about why she is sharing her adoption journey then we are quite similar in our thought process. Very similar to my statement when we started writing about William, she claims she is sharing her journey to help others going through the same thing and to help educate people in the process. Believe me I’m not relishing in this comparison.

Either Myka is an exceptional actress or she legitimately has the right reasons on some level at wanting to adopt this child. The emotions she display often come across as extremely raw and in parts I really felt for her during the adoption process videos.

This is the first video she posted with the announcement of their intentions.

What upset me on this video was that they are talking about fostering before adoption but how it’s not for them because they wouldn’t be able to give them back… ARE YOU FUCKING KIDDING ME! 🤬

One thing I learnt from watching what felt like a million of these videos was that they specifically went for a ‘special focus’ adoption which means you are taking in a child knowing they have medical issues from the get go… I will repeat. THEY CHOSE THIS ROUTE!
This is  a direct quote from one the video’s in which she talks about Huxley’s diagnosis (this isn’t shared at this point) and what it means to them. They had received 3 different diagnosis’s at this point.

This is our boy and we don’t need to consult with any more physicians until I bring this little guy home. He’s our son and that’s that. We’re not going to trade him in. we’re not going to return him. He’s our boy.

So this crap about not being made aware of his need is absolute horse shit! in a direct quote… They didn’t want to know!

Huxley’s Gotcha Day video is heart-breaking and I’m not going to lie, my little book (a purple one this time for the blog) is speckled with tears. A gotcha Day is the day in which adoptive parents can officially take their child home. This should have been his happily ever after. 😥

From what I can figure out from their multiple levels of social media is that Huxley hadn’t appeared since late March but his appearances had been dwindling since the back end of 2019.

A post has resurfaced in which she is complaining and seeking help on a forum for parents who have also adopted from china, She is upset because Huxley is obsessed with food and will watch everyone eat and it ‘drives her husband bonkers’ well William takes food of strangers plates in restaurants and will actively enter zombie mode to get to what you have if he wants it, biting included. He has also on several occasions decided it is appropriate to come sit on my knee whilst I go to toilet… Kids are kids 🚽

The video itself is very well staged, They are both wearing white, a very common symbol of innocence. She is wearing her glasses which makes it difficult to tell if her high pitched whining is actually accompanied by proper tears.

‘do I feel like a failure as a mom? yes like 500%’

I hate to break it to you tiny tears but you were never his mom in the first place if you could do this!

Coming from the woman who seems to share everything on YouTube, she is explaining why there is no proof of these behaviours which were so difficult to deal with!
She explains that little Huxley has gone to a new mommy who has medical training and the adoption agency have said they are a wonderful fit… I’m pretty sure in the announcement about adopting or one of the many that followed, you said you were prepared for the potential conditions of ‘special focus’ children because you were a registered nurse?!👩‍⚕️

I don’t think there is much more I can say on the subject, I do wonder if he had been her biological son would she have done the same? I could never imagine our lives without William, He’s challenging and can be naughty and I’ve often joked about locking him in a cupboard but he’s my life. My son 💙

FYI – whilst writing this Myka Stauffer has lost 2000 subscribers but her video is now on 1.1 mil.

Posted in Reviews

Book Review

Autism.
How to raise a happy autistic child.
By Jessie Hewitson

OK so I want to start by saying the cover and title of this book really put me off. It felt a little too ‘self helpy’ for my liking and although I needed guidance I want quite ready for the self help section of amazon if you know what I mean.
The book itself was recommended on multiple sites and Facebook pages for parents ‘finding their feet’ in the turbulent waters of ASD.
It wasn’t until Debs told me to read it did I buy it… well almost. I put it in my Amazon basket and decided I was ready a few months later.

My review may come across a little scatty but I am writing it as I read and I have a nasty habit of putting books down and forgetting they exist. (9 months I tried to Big Little Lies and still never finished it.) Don’t get me wrong I love reading but I have to really be enthralled by the characters or story line for it keep me interested. Now Harry potter is a book I can read over and over again. In fact I had read all 7 books to William before he turned one. We even read Cursed Child but we try not to discuss that monstrosity in this house.

I want to kick my review off with a quote from one of the first pages in her book.

Lots of mothers and fathers will tell you they didn’t know what they are doing when their newborn baby was first handed to them. But if your child is autistic and you aren’t, then you really don’t know what you are doing and most likely wont for years.

I should have read this book a year ago and I’m not the only one. I couldn’t put the book down for the first few chapters which is always a great sign.
Have any of you heard of Donald Triplett?
Well neither had I!

This is Donald Triplett.
He was the first ever person to be officially diagnosed with autism.
Case number 1. Numero uno. Patient zero.
His parents were told to put him in an institution… and they did!!! Can you imagine giving up on your child like that? I can only imagine what was going on in their head.
Thankfully after a year they went back to collect him. He was their child not a puppy you can return to the pound.

Donald is now 87 years old. He has had a successful career as a bank teller, drives his own car and enjoys travelling the world. Donald is an inspiration to anyone with autism and hope from any parent of a child with autism who thinks its no longer possible for their child to live a ‘normal’ life. My advice to those parents and believe me its something I have to remind myself is to think of Donald.
When things get exceptionally tough and my head goes to all those dark thoughts about things William might never do. I need to remind myself to think of Donald.

If you have read our post about the poem entitled Welcome to Holland you will understand why this next exert really resonates with me. If you haven’t read it then click the clink 😊

Imagine you are a British person married to a fellow Brit; brought up in this country and used to the culture, food and language.
You then have a child together and discover that when the child is 5 years old, they are actually from, say, France.
A different culture. They find some of your food disgusting, they speak another language, its a hell of a shock but eventually it makes sense: this is why you felt so at sea and found it hard to communicate with them. You knew on an intuitive level there was a difference but couldn’t put your finger on it.
You blame the fact they’re French, that’s the reason I can’t play with my baby or soothe them you tell yourself: how did I not realise for all these years that my own child came from a different country?
You start to imagine what it must have been like for them to have a parent who didn’t understand that their experiences were so different…
But the problem isn’t that they are French. the problem is the not realising your child was French, as well as not knowing much about France.
Once you learn the language things get a lot better.

The book has introduced me to the term ‘Refrigerator Mother’
in 1949 Leo Kanner (who diagnosed Donald) suggested that autism was a response to a lack of maternal warmth, in fact he went as far to condemn parents of autistic children. Bruno Bettleheim took this theory and ran with it resulting in the ‘Refrigerator Mother’ theory becoming the mainstream consensus as a reason for autism.

Thank God this was way before my time because I feel irrationally guilty now but imagine if someone had told me it was all my fault because I didn’t love my child enough. It would be devastating. My heart breaks for all the mother back then who already struggled to bond with their babies.

It wasn’t until the 70s when 2 British doctors; Lorna Wing and Judith Gould developed a better understanding of autism. Lorna who had a daughter with autism knew firsthand that the ‘Refrigerator Mother’ theory was absolute bullshit and set out to prove both Kanner and Bettleheim wrong.
She concluded that autism was in fact a spectrum meaning it was most definitely not as rare as her predecessors had claimed.

The two men had started the job of establishing what autism is but like any job, the men (or at least Dave anyways) never finished it and the women got fed up of waiting so finished it themselves.
Before you jump on me… there was a hole in my bedroom wall for two years that I eventually fixed 🤣

Jessie talks in depth about building a team. This team helps both parents and child and can include professionals, friends or family members and its made me think of our team and how its members came to us in the most surprising ways.

First on our team is my amazing mother (honestly look at her, how beautiful is she?!) and our best friend Debs.
Both from day one slowly dripped into our ears that something wasn’t quite right, William wasn’t meeting his milestones and originally they could be laughed off with a joke ‘Oh he’s just lazy like his dad’
I’m not going to lie either they weren’t always met with nice responses and I remember yelling at my mom through tears ‘don’t you think I know!’ and I cringe thinking of that conversation now because even though I was angry it was probably the first time I admitted out loud something was wrong.

Ian, I’m not going to lie I have known him for probably over a decade but we had never been ‘friends’ until maybe about 2 years ago. He was kind enough to drive me home from work when I got stuck for a bus. It took a few journeys before broaching the subject of his little boy and asking not so subtle questions… ‘When did you first know?’
Well its safe to say he saw straight through me and soon our chats about our children’s development became a regular occurrence and were something I looked forward to as I could speak openly without being judged.
Fast forward to present day and Ian has done so much for us whether it is letting us know what certain acronyms mean, what processes need to be followed or what help we can get and from where. Only the other day he spent 45 mins on the phone with me helping me fill out a form and recommending drinking cups that William wont chew through 😬
I can safely say that I am ashamed it took me so long to get to know Ian as in his own words he is skilled at being a good person and a fucking arsehole at the same time!

My sister H who listened to me bitch and moan when the comments about Williams development stopped being subtle. Who has answered the phone and celebrated with me every time I have cried and laughed because William looked at me or touched bread or did something that other parents see every day.

Emma, Tish & Danielle who are always on hand to listen to me rant and are Willing to spend their free time doing William friendly activities that don’t necessarily keep their own children entertained.

These are but a few people but there are so many more.
Everyone that asks after William, thinks of him and those that read our blog are all supporting us and we are so grateful for each and everyone of you. I don’t think we could be so open about our journey with out you all.

The professionals involved are equally amazing, Laura, Linda and Val are his amazing support team at nursery. We have recently been contacted by our local school nursery as we had put his name down for a place before we have even moved house. It’s that close I could literally throw William like rugby ball from the front door and he would be there. We have decided we no longer want a place for him, not just because he wont be going to the school but the ladies at his current nursery have been amazing and William has bonded with each of them. Why mess with perfection?
Lisa from the council who attends ever meeting and has called to check in with us during this pandemic to make sure the three of us were doing OK. Not to mention responding to my slightly panicked emails about the recent EHCP announcement.
Sarah, a real life wonder woman! Our health visitor is truly amazing. I really hope her other families appreciate her as much as we do. We couldn’t have done half and a quarter of what we have without her. We moved house and even though we are outside her ‘jurisdiction’ she has stayed with us and continues to turn up to all of Williams meetings despite being over worked.

Jessie explains that it will take a very long time to fully establish your team both personal and professional. I know as William gets older his professional help will change to match his needs and our personal one may differ as people flit in and out of our lives and we are trying to prepare for it as daunting as it may be. William isn’t the only one in our family who doesn’t adapt well to change 😳

‘No one accepted that there was anything wrong, but looked at me as a bad parent, like I was trying to seek attention.’

‘Many of my family members and friends asked “Why are you accepting this label?!”

‘They didn’t want to talk about autism and just saw his behaviour as that of a typical boy. I have chosen not to have contact with my family any longer.’

Vanessa Bobb on her journey with her autistic son Nathaniel.

Vanessa is is the co founder of a2ndvoice which specialises in helping BAME (Black, Asian & Minority Ethnic) parents supporting autistic children and adults.

Children from BAME communities are less likely to be diagnosed with autism than white children. There are massive racial disparities when it comes to obtaining an ASD diagnosis. Hispanic children are 65% less likely and black children 19% less likely to receive an autism diagnosis than a white child.
Jessie explains in her book that she found pretty much nothing in relation to autism within the BAME communities. Not because it is less prevalent within their race but because there are certain barriers.
Some languages do not have a word or phrase for Autism and a Somali parent is quoted stating her family and friend refer to their daughter as ‘Crazy Girl’ (If you read our post about vaccines you will recall Andrew Wakefield preying on a Somali community which resulted in an out break of measles.) It is not uncommon that families will not have access to an interpreter for their meetings meaning and that they will be forced to rely on relatives, friends or often children to interpret meetings they do not necessarily understand.
Vanessa Bobb states there is a real fear that within her community that this is just another label for black boys. The misdiagnosis of African-American children is FIVE TIMES higher than that of any other race! Five times? Is there that much of a difference between white children and black children? I don’t think so!

Jessie explains that she uses list to organise her life and her sons. I love Jessie for this! I also love lists! I have lists about lists, lists about when William has had a bowel movement, lists about when he has slept through the night, honestly I fucking love lists! They not only help me with William but they also help me function in day to day life.

Don’t wait for someone; the school, your GP, the government to help your child.
Make them help your child!

Parents often lose hope and according to Dr Stella Acquarone it is her job as a professional to tell parents that it is going to be a good life for both them and their child.

One thing I’ve become increasingly aware of is how rarely you see the words ‘Happy’ and ‘Autistic’ in the same sentence. It is almost as if we think autism is so awful that there is no point in aiming as high as happy for our children

It was only today that I filled out our ‘Parents View’ form for our PCP meeting which is to support our EHCP application. The final section asks ‘What are your hopes and aspirations for your child’s future?’ and our only answer was for him to be happy. We don’t want him to be rich or famous. Just happy.
Isn’t that what we all want for our children? Why should it be different if our children are autistic?

Jessie explains that she started writing Chapter 8 – learning to play by discussing the best ways to teach your child to play with you but eventually scrapped that idea because in her words.

Its not just your autistic child who is having difficulties with play. Its you too. The parent, family member or carer doesn’t know how to play with the autistic child anymore than the child does with them.

She spoke about putting on a show, this is something all parents do but for parents of autistic children it is exceptionally hard. By doing this you are focusing your energy on yourself and not in spending time with your child. I am guilty of this. I have tried to put on a show. Look at my normal little family doing this, look at this… its all fake.
She describes waiting for her son to start behaving normally. Something we still find ourselves doing. By waiting for something to happen you can potentially miss what is actually happening around you.

The book fully listed pro’s and cons of different types of schooling. A must read section for anyone with a child starting their school applications soon.
I do wish there were clear instructions in regards to what to do with schooling but I know that’s not possible. What works for one child wouldn’t necessarily work for another. I just worry that we will make the wrong decisions but I suppose every parent has that worry whether their child is autistic or not.
We believe based on Williams need that a special school would be the best fit for him and the pro’s and con’s have solidified that for us. There is even a handy list of questions to ask when viewing a special school which I will most definitely transfer to my trusty notebook when the time is right to visit.

Mind Blowing Facts about Funding!
Mainstream schools receive £6,000 per year for per pupil with SEN. 💰
Special schools receive £10,000 per pupil per year. 💰
If the schools feel this funding isn’t adequate they can appeal for more.

I have already read many horror stories about local authorities and how little support the give families with children with SEN. Jessie states that when she is in her exercise class and partakes in boxing that she she doesn’t picture a person to punch but in fact pictures her local authority.
I want to share her story of obtaining an EHCP document, I have shortened it a little as I have used that many exerts in this review that I may as well have just scanned each and every page for you.

  • The journey starts and the document states black is white.
  • But black obviously isn’t white so you call them to correct it but no one ever answers.
  • You resort to email and wait for a reply.
    Finally when it arrives it states that black is definitely white.
  • You have to reply and explain the law states black is actually black.
  • They never reply and you have to hound them.
  • When they finally respond they tell you its going to their SEN panel for discussion
    This can take up yo a month and yet you still have to hound them for an answer.
  • The panel agrees that black is white
  • You are forced to go to a tribunal in which the council drag out the process with £1000’s of tax payer money. Money that could be better spent elsewhere.
  • It is finally settled by a 2 person panel who advise black is black. It was always black.
  • White was never black.
    But it was in fact a cheaper colour than black and the local authority hoped you would give up.
  • This isn’t the end.
    renegotiation’s of what colour black is must take place at least once a year.

We are just dipping our toes into the murky waters of the EHCP process and we really need black to be black but we are prepared to fight if we need to.
According to Jessie the EHCP process should take 6 weeks but only 58% of local authorities can stick to this time frame. We have been told it can take up to 10 weeks so I am presuming that it has been a long time since Hull has been in the 58%
Some local authorities decline all EHCP requests upon first application in a disgusting way to manage their workload hoping the parents wont try again.

The devil is in the (lack of) detail
EHCPs can be vague leaving them open to interpretation meaning it can sound like they are going to provide all the support your child needs but the way in which it is worded can mean they will only get a fraction of this support. They need to be exceptional detailed with time frames and what if’s.

I think this book is a must read to any parent who has or suspects they have an autistic child. Its a really well written manual of what is to be expected and prepares you for the pitfalls of ‘support’ you will receive from the authorities.
Some of the sections weren’t relevant to William due to his specific difficulties but as autism a spectrum this book would have been a hell of a lot bigger than its 284 pages should she have researched and included every possible scenario for an autistic child.
The book is absolutely brilliant and touched on or delved into so many subjects that I now feel a little more confident having read it and confidence is something a parent of an autistic child often lacks. I feel over the coming years this book will be highlighted, dogeared and full of scribbles as I feel we will be pulling it out before each new leg of our journey. Thank you Jessie! 👏

Posted in Emotions

Our one and only?


















Is it fair?

I always thought I wanted two children but once we actually started trying to get pregnant I soon changed my mind. I have a sister (H) and although we argued; like sisters do but I couldn’t have imagined my childhood without her or even my life now.
Dave however always wanted just one. He too has a sibling but not with a bond like H and I have and maybe that is why he only ever wanted one.

We agreed we would discuss it again when William turned one… Still only wanted one child.
We will discuss it again when he goes to school and again when we turn 34, after all I wouldn’t want to fall into that geriatric mom category of 35!!! since when was 35 classed as geriatric?!

I always said that I couldn’t put myself through it again but I get this little pang when I see my friends with their ‘normal’ or neurotypical children. Surely I deserve that? Why can’t I have it?
All those moments I feel like I’ve been deprived of… A baby who will call me Mummy and will be receptive to my cuddles. A baby who can be comforted by me. A baby who would love me back.

Facebook is the root of all evil… & envy, its banner should be green not blue! I see so many beautiful babies and children on my news feed. Children much younger than William easily communicating with their parents and making it look so easy.
Children singing, counting and developing at the correct rates and it breaks my heart 💔 I am so happy for all of my friends who are parents and why shouldn’t they sing it from the rooftops when their child learns something new. It just gets to a point that I just can’t see it anymore. I have un-followed so many people because I am just brimming with jealousy and it hurts me to admit that because I would never wish any parent to go through what we are but I just want what they have. Why can’t I have that?

But then I look at William who has started eating bread, not toasted bread or chocolate bread but normal bread and I want to celebrate it. He ate a sandwich!!! not one but several! My little man who is repulsed by the touch of bread actually ate a sandwich himself 🤭 But then he also decided he didn’t want to wear any clothes at all and chose to ignore me for what feels like the 1095th day in row.


Before i continue i just want to say it again…. My baby ate a sandwich, not once but on three separate occasions last week!!! He touched bread and it didn’t end in him throwing it on the floor and recoiling in disgust. It was a beautiful sight as you can see.

This week I called my mom very teary because I had ‘that moment’ a moment most parents have every day. me and William had spent the day I the garden and needed a bath but bath times are traumatic at best so I decided to turn the shower head on and sit underneath it with him. He laid there so calm as the water rained down on us and looked me in the eyes the entire time. That moment is something I had been waiting for for 3 years. That moment he looked at me and everything was fine. That moment I knew he did love me but shows it in his own way.

If I don’t get another moment for the next three years I can hold on to those perfect 10 minutes in which he just looked at me and with his eyes told me I was doing OK as his mom.

I think about how William would react to a sibling and I always (well 90% of the time) think it would be really selfish of us to even consider it. William needs a lot of attention and he would not have that like he does now. I don’t think he could cope with the immediate and permanent changes to his routine. You couldn’t train a baby into doing things the way your older child needs/wants them to be done.

But then…
I think maybe just maybe William may flourish with a sibling. Research shows for neurotypical people that having a sibling can have a positive impact on both mental and physical health. However separate studies based on siblings of autistic children clearly show that the neurotypical child often develop social and emotional difficulties.
Would there ever be enough time to give a second child the attention the would need or deserve?
I look (again with envy) at other parents who are in a similar situation to ours and wonder how they make it look so easy? so effortless? I often think of these parents as ‘the Naturals’ whose days are exhausting because they have spent them being the truly amazing parents that they are. I’m an ‘Impostor Parent’ and am exhausted from spending my days trying to be an adequate parent.

I think of the trying, the pregnancy, the complications, the labour and the mental health issues that came after and I just think ‘Fuck it! lets get another dog!’
but then I think of how often Rusty used to shit on the carpet and think better of it. I clean enough poo from the floor as it is.
I think it’s best off just staying the five of us… well four if I get my way about that arsehole cat. (totally kidding as i was heartbroken whilst he was missing 🐈but still an arsehole)

Our perfect/not so perfect little family.

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?

Posted in Appointments

If you’re not on the list, you’re not coming in!

Today was THE day! Everyone said it was… everyone said it was THE appointment to get him on the ASD Panel waiting list. We were referred to the neurodevelopmental paediatrician because she would be the one to put him on that list…
I should have known better, why would this be THE day. A miserable cold day in January when none of the previous ‘THE day’ appointments had been the actual day.

Yesterday we had a tiny step for babykind but a massive leap for William👨🏻‍🚀 He has been using a fork! 🍴 He had actually been scooping and stabbing his own food and successfully getting it in his mouth. This amazing coordination is a huge achievement for him. He hasn’t reenacted this at home yet but he has a small toy that involves putting a disc into a slot and he has also master that. His current favourite game is putting the disc in and passing me it to fire out for him to do it all again… so basically I spend a good portion of my evenings playing fetch with my toddler 😏
His other favourite pastime is holding me hostage in his room and forcing me to play round and round the garden until I can escape but we are currently on game number 1,00000003 and he still laughs before I even touch his hand which means I will keep going.

His bedtime routine hasn’t improved although our morning one has. His Nanna bought him some adorable all in ones to sleep in which means we don’t have to fully disinfect his room every morning. Don’t get me wrong he still tries to take his pants off at every opportunity… he is just like his dad in that way 😜

He isn’t lashing out as much as he has done in the past but his routine is now settled again so i am hoping it stays that way if he encounters changes. He does need his nails cutting soon so if any of you see me with a bloody face then you can probably guess why.

Today didn’t start particularly well, both David and William had to get up much earlier than usual and neither of them handled it well. I basically hand to turn into Gny. Sgt. Hartman to get them sorted and out of the house! I’m not exactly pleasant when i’m stressed.

Traffic was horrendous and we stayed in the same spot on holderness road for 15 minutes and then to cap it off when we get on our second bus we ended up miles away because the shitting ‘movit’ app crashed. THEN google maps told us to go in the wrong direction! Needless to say both me and Dave were very stressed and took it out on each other. He shouted at me, I shouted at him and then we didn’t speak…

Arriving late is never the impression I want to give so I was very on edge when we finally arrived. The paediatrician whose name I can’t remember didn’t come across well, I don’t know if its because I was on edge but she was very condescending and told Dave off for fidgeting because it was distracting her.

She tipped out some toys for William to play with and grilled us about family history and when William reached his milestones. I couldn’t remember when he first smiled and I felt like a terrible mum. I remembered he was 10 months when he first sat up and 21 months when he was walking independently but I could not for the life of me remember when he first smiled. I remember the feeling and the fact I cried when he first looked at me and smiled but not when.
She asked about our family histories and if any one had any history of ASD and there is one person in each side of the family. Both boys and both in Williams generation. Both on our Fathers sides.

How is his medical history, how many times has he been in hospital? How many times has he had antibiotics? What caused his massive allergic reaction? what are his bowel movements like? apparently sluggish bowels are often found in children with autism.
Does he have any birthmarks? What was he like as a baby? Was I on medication when pregnant? Other than GD did I have any issues? Did I breastfeed? How was the labour? Well it was fucking hard! it was definitely no walk in the park.

Then she asked about his sleep patterns and we explained how well he slept really well until he turned two. How is his diet? well… when we can get him to eat he will eat anything and everything, even stuff he wont touch with his hands will go into his mouth. His poops often come out gift wrapped due to the amount of paper he eats. Its not worth risking a finger to get it out of his mouth. 👆🏻

Where do I work? What do I do? Where does Dave work? what does his job entail? How many hours do we work? Who lives in our house? How does William interact with the pets? How is his recognition with people? This one is always a touchy subject as he doesn’t really behave differently towards anyone. I explained we could have walked out that room and left him with her and he wouldn’t be any different. On occasion he will show immediate delight when he sees his Big Nanna or my dad but that is it. She explained how it is fairly common for children with autism to fail to bond with people and parents will often struggle due to their feelings not been returned… well this really hit home and I started crying.
I love William with every ounce of my being but it is disheartening actually more like devastating when he doesn’t care for me in the same way. If I am holding him when he is upset he will reach for hs dad and when his dad is holding him and i got to kiss him he will pull away from away. How will he know I love him if he rarely lets me show it. When we are alone and i’m the only option he will come and snuggle with me but that isn’t because I am his Mum, it’s because I am there.

She listened to his heartbeat and all was fine, took his weight and height and she also flexed his joints, checked out his hands, feet and his birthmark. Is his skin dry? No… I had forgotten about his chicken skin. I always forget about it because to me it is normal as I had it.
Basically chicken skin is a condition called Keratosis Pilaris, it’s basically a build up of keratin in the hair follicles that causes small bumps on the skin. It is hereditary as a few of the women in my family have had it so to us it’s just the norm.

She asked us to strip him off and get him to walk the length of the corridor outside. He did it gingerly, the same way he walks anywhere. She asked us to try and get him to run but he doesn’t run. He never has… we tried to make it a game but he didn’t run just waddled a bit faster. A bit like my version of running 😂 She did speak with us about his walking abilities and how hard things will get when he no longer fits in a stroller and where to look for help. Obviously this wasn’t what we wanted to hear as we hadn’t even thought about the fact he may not get better with his walking so it was a bit of a blow.

She agreed he has a severe developmental delay and the 9-11 months bracket he was put in before was correct. That is 2 whole years behind where he should be. He will be 3 in March which seems crazy as I feel like it was only yesterday we brought him home from the hospital. Although she also agrees that he has severe autism she will not be the one to put him on the ASD waiting list. She wants the speech and language therapist to it. What the actual fuck!!! So let’s just recap who we now know wont, haven’t or cant do it…
* Ourselves
* The Nursery
* His Key Worker
* His GP
* His Health Visitor
* The woman from the Early Years Team
* The Paediatrician from A&E
* The Community Nursing Team
* The Neurodevelopmental Paediatrician
They all agree that it is highly likely he is on the spectrum but nothing has actually been done with that knowledge. If the S&L therapist doesn’t do it then I do know who will and just in case anyone spotted me crying hysterically in the middle of anlaby road this is why.
The waiting list according to other parents waiting time for first contact is currently 867 days. That is 2 years, 4 months and 15 days. 28 and a half months. 124 weeks. 20,808 hours. 1,248,480 minutes or 74,908,800 seconds.
I can’t imagine this wait getting any smaller and the longer it takes to get us on it, the longer it takes to guarantee William the support he needs.

Once again one referral has lead to another and she wants to refer William for blood tests to rule out any underlying issue as autism can often be the symptom of something much bigger. She is also requesting genetic testing.
A genetic test can not diagnose autism or detect it early but there are 100 genes that have clear links to autism but no one mutated gene can cause it. For example there is a clear link between children missing the chromosome called 16p11.2 and autism however one 1 in 4 of those missing this have autism.
This test can give us a reason as to why him? and I know it’s selfish but I think as parents we need to know its not our fault and that we haven’t caused it somehow.

So no answers were given today and today was not THE day we get on the waiting list. We are back in three months and hopefully will feel like more parts of our journey have been completed.

On a separate note we received a message from the nursery today about an exciting new room they are creating. A sensory room! Children with needs like William’s will be able to spend their time in a special environment tailored to them. William’s Key worker Val will be based in there permanently and as William needs 100% support so will he. I am so pleased with this development. They are a fantastic nursery and i’m very lucky we chose them to care for William.

I started writing this at 7pm and it is currently 1:15 in the morning. William has been throwing up since about 8pm. Terrified me the first time as I thought he was choking on it. He only ever been sick like this once before and it was over a year go.
Currently I have a pile of sick covered clothes, cushions and blankets (both mine and his) that need to go in the wash, his pram and travel cot (I didn’t want him in his room alone if he was sick again) sat drying next to the radiator and William asleep on the sofa behind me with a temperature and a towel… Just in case.

Posted in Events & Holidays

Jingle Hell 🔔

Christmas is a hard time for kids like William, kids who can’t take on board change and who become overwhelmed easily. His weeks are usually as structured as we can get them to prevent meltdowns or what I like to call ‘hunger strikes’ he ends up so upset and out of sorts he won’t eat anything and anyone that has witnessed William with a Sunday dinner knows this is a big thing for him to refuse. His nursery will give him second helpings of all his meals to stop him taking other peoples… I think I should be embarrassed of this, but he definitely takes after me 🤣

MondayDad takes him to nursery
TuesdayDad takes him to nursery
WednesdayOne on one time with dad and then grandad
ThursdayOne on one time with Mummy
FridayOut and about with Mummy
SaturdayFree for all or a trip with Danielle
SundayVisit Big Nan

William hasn’t been to nursery since 23rd December and isn’t due back until the 6th January. I hope returning won’t set him off as much as not going has as he is only just calming down.

Christmas eve was fine. We went to spend time with Harry so they could hopefully wear each other out and William was almost well behaved except the usual, eating paper, throwing food on the floor and trying to destroy all Harrys toys but on the night he slept like an angel. 👼🏻

Best buddies

Christmas day was a completely different scenario. As we go to my parents it means he needs to get up much earlier than usual which never goes down well, especially as on a Wednesday he usually gets a lie in.

He didn’t want any breakfast or chocolate… yes, I’m a bad mom by trying to bribe him to eat and I’m not ashamed but even that couldn’t tempt him.He opened a few gifts and wasn’t interested after the paper was gone and then decided he had had enough and didn’t want to open any more. Didn’t want to get dressed. Didn’t want to leave the house. Needless to say, we were late to my parents. ⏰

I guess we didn’t help the situation and our living room was a massive sensory overload. I didn’t even think about how he would react. I just thought about how as a kid I was always absolutely buzzed to see all my new toys at once and couldn’t wait to start tearing things open or playing with them. William was absolutely spoilt and not just by us; there was outdoor equipment, a wooden kitchen, a train table, a bubble tube and so much more! That little feeling of pride burned inside me. We did this. We shopped around and bought bits all year. We have well and truly outdone ourselves with Christmas this year! But that’s was the problem. It was more for me than William, next year will be different as I know I was selfish by giving him too much. That wasn’t for him. That was to make me feel better. Next year I will do my best to ensure Christmas is focused on what my child wants and not what I think any child wants as there is a big difference.

Boxing day was a blur and we went to see William’s Great Nan in her nursing home. William didn’t eat all day and wasn’t interested in his Great Nan. It can be heart-breaking as I know Dave would love to see William cuddle his G.Nan and acknowledge her but he just isn’t wired that way.

By the 28th he was eating properly (also classed as ravenously) and seemed to have settled. He has slept so well for the first time since Christmas eve and he must have been running on fumes and frustration since then. I literally thank god that he is getting back to himself but then panic sets in as I don’t want him used to this kind of routine as it isn’t a routine at all.

And now we are on to today, New years day 2020! The family are all together except Dave who must work, and William is his usual happy self. He’s laughing, playing and cuddly. He eats his dinner (and mine) two desserts and then some. 🍽🍽🍰 and now we are at home and he is fast sleep.

Happy new year William!

Our new years resolutions as a family

  • Be open and honest about William and his progress (we started this one early)
  • Continue to be proactive in fighting for Williams referrals and needs
  • Spend more time as a family
  • Come off my medication

I have been on antidepressants for over 18 months and I finally feel in a place where I am ready to come off them. I understand and accept my child, I am happily married to man who would walk over broken glass for us, I have a new job that makes me happy to go to work and I have a wonderful support network. I had almost all these things before however there were so many changes in my life I couldn’t handle it.

This last year or even decade hasn’t been easy for us as a family but 2020 is going to be our year. We started our journey in 2019 and are fully prepared to stay on the ride.

To be honest we wouldn’t have it any other way! 👪

Posted in Appointments

In Black and White

A Nasty Reaction

I feel like I need to put a little bit of context into the above photo; whilst visiting Williams Big Nanna (my Nanna) like we do every Sunday he had a little red spot on his hand and 2 on his face that seemed to have appeared out of nowhere. As the day went on a few more appeared but he was fine within himself. Dave took him to the pharmacy in the morning as he had a few on his feet too… ‘Hand, Foot and Mouth’ they said. They can’t be wrong can they? We kept him off nursery as we know how contagious it can be.

On the Wednesday whilst I was at work the rash had spread all over his little body and the boy was itching which doesn’t usually happen when children have Hand, Foot & Mouth. Dave called 111 for some advice and they sent paramedics to our house who decided to blue light him to Hull Royal Infirmary. Dave didn’t call to tell me…

I rang him during my lunch to find out how William was and he said he was waiting to get the boy checked over as his rash is was worse. ‘what times the appointment with the doctor?’ he wasn’t at the doctors, ‘are you at the walk in?’ No.
He told me where he was and that everything was fine and was sat in childrens a&e waiting to be checked out, he didn’t mention the ambulance. ‘Do I need to leave work?’ No he was fine and just getting checked over and then they will be home.

I updated Debs and the Hobmans… Me, My Mum and Sister have a group chat. Debs told me to go and she would take over my work and My Mum and Sister both immediately called me. ‘Everything’s fine. I’m staying at work. Dave just wants him checked out’

3pm I call whilst on my last break… ‘everything is fine’ he says.
‘Do you want me to come after work and meet you both in a&e?
‘well… err we have been moved to a ward. Just for observation though! he‘s fine’
Debs again pushes me to leave work… She knows me too well. She knows I don’t want to be there in case something is wrong… I don’t want to hear the bad news because if I don’t hear it then it isn’t true. I know it’s selfish of me but I could justify it because Dave said he’s fine even though I know he is just trying to protect me from spiraling.

William was in fact fine and they even made it back to our house before I did. Dave was armed with a letter of discharge stating it was Viral Urticaria (Hives)
They had injected him with a strong antihistamine. This was especially nasty as they cant inject in one swift go but they have to do it over 60 seconds, so poor Dave had to restrain the boy whilst this happened.

RELIEF! all was good in the world. William was fine… we couldn’t pinpoint what had caused the reaction but he had recently finished a course of antibiotics (you know the kind; the tasty banana stuff🍌) for a chest infection, before that he had suffered with a Vomiting and Diarrhea bug. Maybe it was a reaction to the medicine or even just an after effect of been so poorly. We even thought it could have been a reaction to some cleaning products that was on Big Nans sofa as she had recently had it professionally cleaned.
I messaged the family chat to update them. Great news! only Dave didn’t look like he had great news… and that’s when I saw it, I don’t know how I missed it. In bold lettering at the bottom of the discharge letter ‘Actions to be completed by GP: we would recommend that William be referred to the social communication difficulties team for investigations of possible Autistic Spectrum Disorder. We would be grateful if you could facilitate this’
The Paediatrician at the hospital had asked Dave about Williams behaviours and told him it was highly likely William had some form of Autism.

Our 3rd Post

I cried, Dave cried and I’m pretty sure every member of our support network cried too.

When I told my Nanna she asked in hushed tones if I was telling people. ‘Of course we are. It’s nothing to be ashamed of’ she said she knows that but does she? Does anyone?

I asked my friend between sobs ‘How can I care for a child with special needs?’
‘You already are and have done for the last two and a half years. This doesn’t change who William is or you and Dave as his parents’