Forgive the horrendous pun 🙏🏻 but I couldn’t resist.
What can I say about Christmas 2020? What can I say about 2020 in general that hasn’t already been said be everyone? I think this year I had more understanding of what William could and couldn’t handle at Christmas which made it easier for me to make sure he wasn’t overwhelmed.
Each christmas eve I have alway reads William ‘Santa comes to Hull’ I’m not sure why I made it a tradition as it wasn’t one I had as a child but I felt it made it a little special knowing he was on his way. This year William grabbed the book from me and and decided to show me it before I read it… Maybe one day he can read it to me 🥰
I’ve been poorly recently with a mega cold 😷 (100% NOTcovid as I had a test) and an injured scapula so the preparations for christmas have been hard physically on top of the usual picking up and carrying William and then the emotional toll of it being my first Christmas alone as a single mom which… If I do say so myself I totally bossed it 💪🏼
Every year without fail we all have always had christmas dinner at my mom and dads house. Christmas isn’t christmas without my mom yelling at my dad to get out of the kitchen or telling us there isn’t room for all of us in the small room, my niece eating more than her share of after eights and my dad hovering round with a bin bag asking if anyone can take it home 🤣 and even more so… it isn’t christmas without big nan. The first lockdown kept us apart for 113 days… so far on this teir 3 we are at 66 days and counting. Thats almost half a year! 😲 I know the rules for christmas day were relaxed but it wasn’t fair to potentially put anyone at risk with William going to nursery, his dad visiting him but working, my sister working and my niece at school… we all felt we would rather we were all here next year to celebrate properly (I’ve also told my mom she has to cook christmas dinner for us all once its safe to do so even if it is summer 🦃 BBQ turkey will not be accepted)
William came down christmas morning and started playing with some of his toys and opening some gifts at his own pace. When this got too overwhelming for him, he retreated upstairs and laid on his bed floor for a little bit until it was time to leave the house. My sister thankfully allowed William and I to go for dinner (the covid test probably helped in that decision😂)
Before I had William I hated Christmas and as William doesn’t usually cope with the festivities I was getting this way again but this year I realised I love it, I love the opportunity to see all our family whilst we aren’t working, to eat good food and just be happy. I think Christmas 2021 will be appreciated so much more than any before it by everyone.
William really enjoyed his christmas dinner and when I say that what I actually mean is he actually ate it this year and pudding too 🍰… I hope his nanna doesn’t take this personally against hers especially after my dads comments last year #dry 😂 We took some of his sensory toys and his tablet so that he could freely do what keeps him happy such as watching ‘Little Baby Bum’ on netflix and biting things 😁 The reason his does this is for oral stimulation… If i’m not careful he tries to eat the fluff on my dressing gown, paper, dog food or his own poop 🤮. I do think William may have an eating disorder called Pica which is relatively common in those with autism or developmental conditions.
When we got home he was ready for round two of presents 🎁 and to spend some time with his dad, which was nice as he got to see him open some gifts too. We ate left over buffet from christmas eve (yes we had room and no I didn’t cook it; it was a cheeky morrisons order) and relaxed in our new PJ’s until bed time.
Williams weighted blanket from big nan was a smash hit but he wouldn’t share it with me, in fact when I tried to cover myself with my own blanket he decided I wasn’t allowed that either😲
Overall this Christmas (year even) wasn’t the one anyone imagined we would be having but to me its given me a whole new appreciation for the festive season and how important it is to spend time with your family. I’m not saying that this time next year I wont be writing a ‘Jingle Hell… Pt.2’ based on last years post but I think I am more prepared now, I can see what triggers William’s meltdowns and can try to prevent them in advance.
I really hope you all had a wonderful christmas or at least got very drunk to block it out🍾 We will all have a re-do for 2021 and it will be the most magical christmas any of us have known, wouldn’t it be amazing if it was a white christmas too ⛄
Its approximately 28 hours until we can say goodbye to this terrible year, I am still working hard on my Understanding Autism level 2 so I may not get the chance to wish you all a happy new year after today but remember, it can not be any worse than this year. Much Love M. x 😘
It is a strange feeling to know that it will always be me who will get up to soothe William in the night, always me that will get to kiss him goodnight and always me who will be bitten and hit during meltdowns. I never imagined I would have to try and coparent with anyone who wasn’t my spouse and it’s hard to have to stay in such close contact with someone who has hurt you so badly but it isn’t about me, its about William and he has and always will come first.
That being said I am trying hard to keep my own mental health a priority too, I have made it no secret that the last time I had a lot of changes in my life I had a breakdown and went to a dark and scary place but I came through it with a lot of help but only once I able to admit my feelings. I am very lucky to have an amazing support network who I can be open and honest with about my feelings. I can cry, shout and be irrational without being judged and I am so grateful for that.
There are many things that I am so thankful for right now. After weeks of practising William has finally mastered his first Makaton sign… I don’t think it will surprise anyone when I tell you it is for food. 🥗 that boy loves his grub! I am going to slowly introduce more signs and have invested in the Makaton core vocabulary stages 1-8 book, I bought this direct from the Makaton charity so that I know the money is going to the right place and would recommend anyone to do the same. I will keep you posted on any further developments when it arrives. Check out the video here.
William also got his first grazed knee, he was outside playing and fell which shouldn’t be a good thing but… it was the first time he put he hands out to stop his fall. It was not just a fall because he lost balance, he fell because he was excited and trying to run. He reached out to me for comfort and as I held him, he stopped crying. That wasn’t usually something I could do as he always sought his dad for comfort.
We are missing Big Nan loads 😥 Sundays aren’t really Sundays with out seeing her or having her Sunday dinners 🤤 I worry that when national lockdown ends we will go straight into localized restrictions. I know she is missing us just as much. When we call her and she asks William for a kiss, he starts kissing the phone. He does not do this for anyone else. Their bond is amazing despite spending 113 days apart in the last lockdown, not that I counted 😳
We have had many sleepless nights recently whether its because William is still adjusting to his new routine or because the poor little guy always seems to be poorly, he manages to pick up a cold more often than some people change their underwear. I swear that boy has had a constant runny nose since he was two years old. Then there are his bowel problems which means he either can’t go to toilet or that when he does they are massive explosions of nastiness… But with the help of lots of coffee and cuddles we have survived them.
Before I sign off I want to tell you about one of my solo fails recently and I apologise if I have told this story in a previous post… William had a huge explosion during our first week alone, I’m not going to lie for a few seconds I freaked out. We were in the living room, so I stripped him off and made our way to the bathroom (which is downstairs) through the kitchen. His hands were covered in poop and I managed to prevent him touching anything except the bathroom door. Swiftly plopped him into the bathtub and hosed him down with shower, William hates bath time but seemed soothed under the stream of water and as there was no risk of drowning I left him sat in the empty bath running his hands under the shower head… My plan was to disinfect the door which was easily done and then quickly grab his dirty clothes and nappy so we could go straight back into the living room to continue whatever it was we were doing (most likely watching Little Baby Bum on Netflix📺) I’m not going to lie, I felt pretty chuffed with myself but as I pushed open the living room door that soon changed… there was poop everywhere!!! The dog had destroyed the nappy and my clean living room now resembled a port-a-loo at a festival 🤮 needless to say the experience was most definitely a learning curve and since then the dog is not left unsupervised with shitty nappies.
Oh and check out this picture, my DNA runs strong in this one…
Did you know there are around 1.8 million single parents in the UK – they make up nearly a quarter of families with dependent children. 1.62 million of these are women. I never really thought about this until it happened to us.
I could lie to you all and say we have had an easy ride of things recently but I think you probably know that’s not the case. This is a big adjustment period for me and more importantly for William.
My main focus is to continue to ensure William has a good solid routine in place which is pivotal to him. He is keeping me extremely busy as he seems to be struggling with this huge change in his life, bed times and mornings are now only ever with me and I don’t think he enjoys them very much. He fights and kicks me when I try to change his clothes, runs away from me and screams but we get it done.
We take the dog for nice little walks (well he walks us🐕🦺) which William seems to really enjoy even though he is in the comfort of his stroller and flat of refuses to do any walking. I’m tempted to stay at home and just tie the dog to the stroller and let him pull it arpund the street like a sled 🛷 but I think that would constitute as child cruelty or animal cruelty. Maybe neglect? So I best continue to go with them 🤣
We are eating healthier (as healthy as a boy thats half chicken nugget will eat anyway🍗) and trying to turn this into a positive thing for our lives and look to our future.
We’ve had meltdowns and shutdowns (from both of us😭) but we’ve come through it and these are getting less and less frequent on both parts. He is slowly adjusting to his new routine and I can now see the light at the end of the tunnel but its hard. Harder than it ever was before but we are doing ok. In fact we are more than ok, we aren’t just surviving like I thought we would. We are actually living thanks to our amazing support network of family and friends.
We can not thank everyone enough for reaching out to us, the doorstep visits, dropping off shopping and just being there for us. It means more than you all could ever know 😘 Much love M x
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 🥱
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 🚗
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 😘
The world is slowly starting to settle into a new normal which sadly means the amount of posts we have shared is slowly declining.
Jobs have resumed but sadly nursery hasn’t (at least not in a William friendly way) which means we don’t have as much time as we did over the previous months were it often felt like we were spamming you with content. #sorryNOTsorry 😂
We will still be aiming to write a minimum of one post a week however please remember that we both have jobs and a very demanding toddler 🧒🏼
This year has taught us so many things already that should have been obvious.
Hug your family a little tighter when you can. You never know when you will be able to do it again, if ever. It will have been 113 since we last saw Big nanna.
Appreciate your friends, who checked in on you to make sure you were ok. I tried to check in on almost everyone, especially those I knew lived alone or had health concerns. I was shocked at how few people checked in on us and it hurt a little.
We are not invincible! The ‘it wont get me’ attitude was astounding during the last 3 months and for the most part they were right. It wouldn’t get them until it did! It felt like this huge thing that was happening to other people but then it hits closer to home and it really shocks you, parents, grandparents, celebrities… it had no boundaries and we are super grateful that our loved ones who were affected have since made a full recovery.
Appreciate your neighbours and get to know them, I can honestly say that we have never made a massive effort wherever we have lived to get to know our neighbours but during lockdown we found that they were our biggest support and comfort whilst having a cheeky brew (or beer🍻) over the garden fences and wished we had done so sooner.
The family that works in your corner shop, the cashier at ASDA, transport workers, support workers and many more have kept this country cared for and stocked with essentials (toilet roll 🧻) during a time when others were scared to leave their homes. Unsung heros of 2020 🦸♂️🦸♀️
I went into lockdown in panic mode, I honestly worried about my mental health and how I would cope with no professional support with William, no days spent at the office or visits with family. I cried myself to sleep about how alone I was. How each day with William felt like I was drowning and every time I got my head above water another wave would take me under. Don’t get me wrong we have had a few issues like chicken pox, ear infections and bowel problems to make matters more tense but we did it. We were strong and made the most of the time we had as a family.
Dave and I are usually like ships in the night; I work on his days off and vice versa, these past three months we have spent more time together than we have in about 5 years. We got to know each other again and did daft things like play on the playstation and go for little walks holding hands. I am so lucky to have found a man like him, blessed to have convinced him to ask me to marry him and forever thankful that he gave me William.
Williams nursery is closed until September, they have offered us a place at a different site until then but we don’t think it is the best option for William as he would just start adjusting to the new site only to move again, we have been trying to keep things as routined as possible for him at home but its not always possible, I have been back working from home for 2 weeks and during my first meeting he came upstairs with a chicken nugget (successfully avoided the dog) and tried to stuff it into my ear. 🤣
I think is the beginning of a new normal, a new way in which we do things. Was the old way better than this? I guess only time will tell.
FYI. We saw Big Nanna on Sunday. William hadn’t forgotten her like she had feared. He acted as if we had never been away. She cried, I cried, we all cried 😭
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.
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.
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 😊
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 😳
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.
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.
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.
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! 👏
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 ifI get my way about that arsehole cat. (totally kidding as i was heartbroken whilst he was missing 🐈but still an arsehole)
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?