Posted in Emotions

The green eyed monster

I want to talk about the green-eyed monster, you know that devil that sits it the back of our minds, whispering in the back of our heads sending us all into a tailspin. I’ve touched on this subject a few times in relation to the unspoken competition between parents about how well their kids are developing, how soon they talk, walk or progress.

Today I want to talk about it in general not just in relation to parenthood but everyday life, I also want to open up about some of the things I do that may cause the green-eyed monster to pop up in other people. We all encounter moments in which we want what someone else has or we think someone wants what we have. Jealousy is natural in some degrees but to some it is all consuming, there are some that don’t understand that it is just a voice in their heads.

We all experience it, I for one really struggled with it when William was a baby; I unfollowed my friends on social media who had babies at the same time because I was jealous, and it hurt to see their babies developing at a quicker rate than William. It took a long time for me to be able to be happy for those parents instead of envious. Even now sometimes I comment and say how wonderful things are, how beautiful, how smart etc but my head still occasionally says, ‘why not me?’
A few years ago that thought would consume me, and I would scroll through social media pages and sob about how unfair life was, but I have grown since then and now I can be genuinely happy for my friends, but it doesn’t stop the pangs of jealousy. Seeing Little Miss grow so quickly and overtake William in the year I have known her has been hard, seeing her ask for her Mama and ask for ‘Big hugs’ from her Daddy is a wonderful thing to witness but there is a deep sadness there for me. I guess I just want those moments for myself. We always want more than we have, its natural… The moment William said ‘Mom’ for the first time was one of the best moments of my life but now I want more. He made a noise at bedtime a few weeks ago that sounded like ‘I love you’ but it wasn’t words, just sounds but now I’m desperately hoping for an ‘I love you mom’ but it may not happen, but I ache for it, dream of it, even long for it. William surprises me every single day and in the last two years had come on so far with his development so I’m not saying it will never happen, but we just don’t know what he is capable of until he actually does it.

I got jealous when other parents of children like William were given school places and William wasn’t… I was happy for them and cried happy tears but fuck me, it hurt at the same time. I think that’s natural though. Jealousy didn’t mean I wasn’t ridiculously happy for them because I truly was. I called my mom and told her every time other parents got good news, ‘mom this happened, hopefully it will be us next’ and then when it was our turn, I expect those that come after us will be the same. We want the best for our children, and as happy as we are when others get that first, we long for it to be our turn and feel that in the parents that are fighting for their kids’ educational needs right now. The system is not designed to help our children or to get them what is right for them, it is designed for what is right for the local authorities behind the system.

Money is a big factor of jealousy for a lot of people, and I am not ashamed to say that I don’t have a lot of it, I work part-time, I’m paid well, and I absolutely love my job but due to being part-time, it means I have to plan my money very well. I have to think about what’s coming in the upcoming month and budget appropriately. I can’t just decide to go out or to buy something without thinking about it a month or more in advance.
I love my house and everything in it but that didn’t just happen, I wasn’t always living on my own. As we all know, 2 years ago I was married and in a 2-income household which had a big part in building up my house into a home for William. Credit where credit is due, William’s dad left the house as it was so there was least disruption to our son, I didn’t give him a great deal of choice which may have been selfish of me, but I wouldn’t have the nice things I do if it wasn’t for him, and I am grateful for that. There are things that people may wonder how I can afford on my wages, but I know the price of everything and when I need something, I budget for it as best I can with help from my parents if needed. I have a large television, which is completely wasted on me only watching BabyTV and Coronation Street, but it is something I would never have bought myself. It was a Christmas gift from my parents a fair few years ago and something I have made sure to take very good care of.
William has more toys than most children, I bought in excess for his birthday (I had been stockpiling gifts since mid-2021) not because I have money to waste or an excess of it but because I don’t know what will work for him. Two gifts have already gone in the bin because they have been broken, one on his actual birthday 😫 and I anticipate that many more will go to landfill in the following weeks. Don’t get me wrong I usually try to donate where I can but if they’re broken it’s not possible. The toys that hold William’s interest are usually aimed at younger children, but it is what must be bought to match Williams developmental age, but they are not built to withstand the strength of his actual age. Some toys won’t be played with for months, if at all and it’s a risk I take when buying anything… so there tends to be a large choice for him so that he has at least one gift he loves. I threw a small party for his birthday and that needed budgeting for well in advance. It wasn’t me showing off, look at what I have or what I can do… it was me saying that William deserves to have something nice and why can’t we celebrate his birthday like other children do? I paid for a cake which was divine and a bargain but the money for that came from my January wages, I paid for a Morrisons buffet; the deposit came from February’s wages and the balance from this months. Every step of his mini party was carefully budgeted and planned out.

Christmas is another thing in which people may think I go overboard, but again I plan Christmas all year round… I am lucky enough to have a spare room, this is now what I class as my office but really it’s a dumping ground, there is a freezer which holds copious amount of chicken nuggets for William, a tumble dryer which physically wont fit in my kitchen so is next to my desk with a vent out the window, meaning my office is always cold but there is no point in turning the radiator on as it would be huge waste of money. I often work in a jacket, or a dressing grown as it can be pretty nippy in winter. There are two sets of industrial shelves which hold Christmas decorations (I can’t access my loft) and throughout the year I buy Christmas presents which live on them until December, or birthday gifts months in advance… a little bit at time so it has the least financial impact, before I had William, I used to buy everything out of December or Novembers pay and then struggle to afford bus fair to work until February 🤣 I was always the kind of person who lived like a king 👑 for the week after payday and homeless for the rest of the month.

I have been to people’s houses or seen pictures on Facebook and thought God I wish I could do that or have that or go there, we all do it, but we all handle it differently.

The reason I have been so honest about what I have and why is because I would never want anyone to look at me through green eyes when there is no reason to in my opinion. We each manage what little money we have differently, and all have different circumstances.

I’ve never been a massively jealous person when it comes to relationships, this is probably why I didn’t realise my ex was having an affair 🤣 as a person who has more male friends than female, I would never hold someone to different standard than I hold myself but that doesn’t mean I don’t occasionally get a little worked up over daft things. That there isn’t a voice in my head going ‘what if…?’ but I think that’s natural of all of us. Its part of being human but so is being able to trust people. Its hard to get out of a mindset in which you think everyone will hurt you but it’s imperative to do so in order to move on in a healthy way. People do shitty things and we cant stop that; we aren’t able to stop other peoples actions but we can learn from them without the result of those actions consuming us.

I used to have only child syndrome, despite having a sister haha 😳… What is mine is mine and that’s the end of it but as I have grown up, my opinion on things has changed massively. If I have something and someone needs it or wants to borrow it, then I see no issue in helping them out. (Partners not included 😂)

Social media is the devil, its so easy to post a picture and pretend to the world that your life is perfect, you can filter yourself and crop out the cracks in relationships, the mess in your house and the worries you feel when you look at your child. There is no shame in being honest and again I think I have said this before but fuck you Mrs Hinch for making me feel bad about my messy house, fuck you Kardashians for photo shopping your bodies to a ridiculous and near on impossible standards, as crazy as reality TV is, I give huge credit to the stars of Geordie Shore and reality shows of the like… not because of the surgery they keep having to meet the standards they feel they should but for portraying themselves in a realistic way. They get drunk and messy and wake up looking rough with last nights make up on… I don’t even watch the show, but I have seen clips and newspaper headlines trying to shame them, but we all do it! We all forget to take off make up before bed, we wake up looking like we’ve ran an obstacle course in our sleep. I hate the unrealistic nature of things online… Don’t get me wrong, I love a snap chat filter, but I also know its fake and I think that’s the struggle a lot of us fail to understand sometimes. We shouldn’t be jealous of something that’s not real, we shouldn’t aspire to be like these people who pretend to be what they are not!

My green-eyed monster rears it head less often than it used to but its still there and its part and parcel of being human, of being who I am and I’m not ashamed of that and nor should I be.💚

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Posted in Events & Holidays

It’ll be lonely this Christmas 🎄

Any of you that have read past posts will be aware that I love and hate Christmas, there is no inbetween for me, I love time off work, spending time with the Hobman clan, giving presents, having copious amounts of chocolate in the house and even my dad making the same jokes he’s made for the last 10 years… (Kaylee and her heelies – they lasted 5 whole minutes…. up and down the drive once, where all the rubbish will go and how we would each have to take some home and the fact my mom’s turkey is dry) I’m honestly surprised that my mom hasn’t chinned him.🤣

I was genuinely looking forward to this Christmas, last Christmas our family was separated due to the government restrictions just like many others across the world, so it made this Christmas that bit more special. There are four generations of us: big nanna, my mom and dad, me and H and then William and Kaylee.

Williams letter from the fat man 🎅

Everything was planned to the finest detail, William would spend Christmas eve with his dad, come home for bedtime, read his letter from Father Christmas and his usual Santa book ‘Santa comes to Hull’.

As you can see, it’s been a tradition since the year he was born. x

I always sneak in a cheeky reading of ‘the night before Christmas’ as its my guilty pleasure. Christmas day, we would try to take things at William pace, I would be dressed and ready before he woke up, breakfast and then gifts before letting him chill out and finally setting off to my parents for lunch and family time… but that didn’t happen.

What do you do when your sons dad messages you saying he’s got covid and its Christmas eve and he’s got your son? Again, I shouldn’t have to say it, but this isn’t a post in which I slate William’s dad. Although when I read that message, there were a few expletives running round my head purely because of the ramifications of his message but I wish him no harm and hope that he and his girlfriend recover quickly, mainly because I need childcare for when I go back to work in January (Jokes 🤣)

After having a cry and getting angry, I made the decision to stay home with William in order to protect my loved ones. My family are all vaccinated and boosted but I just couldn’t take the risk, especially with big nanna. I would never have forgiven myself if she caught it from us.

William and I have been doing lateral flows each morning and so far, both have come back negative and hopefully they stay that way but I will keep you posted. 🤞 I’m not going to lie, it was a really difficult decision to make, not only did it mean I couldn’t be with my family on Christmas, but it also meant I couldn’t spend Christmas eve with L. Our first Christmas together and we couldn’t see each other until late Christmas night so that he could reduce the risk for family too.

I think Mud had it right when they said ‘It’ll be lonely this Christmas’ because it really was… William seemed to have a great day though. We opened presents, ate chocolates, and generally made a mess of my very clean house (only because I was manic cleaning Christmas eve as if Santa was a house inspector🧼)
William was a little overwhelmed as there were new things in the living room but because there was no panic or rush to be out the door, he could just take things at his own pace and seemed to enjoy exploring his new things. We even had all the presents open before lunch, except for the ones L brought on the evening.

I’m sure I said this last year but next Christmas is going to be the best one yet… At least I hope so x

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Posted in Events & Holidays

Autism Night Before Christmas – by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…
But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……

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Posted in Events & Holidays

It’s beginning to look a lot like… the end of November

Its that time of year, people have started putting their Christmas decorations up and I excitedly point them out to William hoping to see some kind of flash of recognition or magic in his eyes but there is nothing, but that doesn’t mean it will always be this way and I cling to that. This is going to be Williams fifth Christmas which means as per our tradition it will be his fifth Christmas Mickey toy and this year, I will start the tradition for Little Miss.

I was always a self-confessed scrooge; Christmas was never like it was portrayed in the movies and it always fell short of my expectations. There was no snow on the ground, we didn’t have a house full of people, all happy and playing board games. Don’t get me wrong, as a child our Christmases were magical… ‘Santa’ would fill little stockings outside our bedroom doors, and I would excitedly run into H’s bedroom. ‘he’s been!’ I would scream and the excitement would begin.
We weren’t allowed downstairs until my mom had been to pick up big nanna so we would sit on the top step waiting to hear the car pull into the driveway.
‘Santa’ always delivered except if it was something noisy… like the Christmas of 92 when H was severely disappointed at not getting a Teenage Ninja Mutant Turtles whistle. Apparently, it was sold out, but mom and dad didn’t want something so noisy in the house so got her a ball instead haha🏀

I’m a weirdo and love giving presents to people, I love thinking about what I feel people will appreciate and putting thought and love into gifts and then seeing their faces when they open them. On the flip side and this definitely makes me a hypocrite, I am a terrible person to buy for, I hate receiving gifts and being expected to open them in front of people, purely because I cannot hide my reactions… my face always gives me away. My girlfriends and I do a Secret Santa every year and I flat out refuse to open mine, mainly because on Christmas day, I don’t really have a lot to open but also so that I can do it in private. Birthdays are the same too. I am super grateful to anyone that thinks enough of me and is generous enough to buy a gift, but I like the privacy of opening them alone.

William’s Christmases aren’t like the movies, or the ones I had as a kid, but we adapt to suit the kind of Christmas he needs, and we try to make it as special for him as he can handle. Separation can be hard as it usually involves two Christmases and two birthdays, but William can only just cope with one. Thankfully me and his dad are on the same page and can make plans which suit William without it turning into an all-out war and I’m grateful for that.

Last year despite the covid restrictions, William had what I can only describe as our first peaceful Christmas; everything was done at his pace… there was no rushing and no expectations. Peace and joy for all.

My tree is not yet up as I don’t know how William will handle it due to his pica and his obsessive need to eat objects, for the last few years I’ve ran interference but it’s not getting any easier. Putting my tree up is magical to me; it’s the same tree we had as children, so it brings back many happy memories for me putting on all the old but very loved ornaments and seeing them incorporated with our own newer ones.  I think my favourite is a little green one which is half open and contains the three wise men, I mean… I think they are the tree wise men, but they are so worn that they could be miniature figures of the Bee Gees. Staying alive on my Christmas tree 😂

My stand-alone ornaments have long been abandoned and are currently sat gathering dust in my spare bedroom/office, I think I may donate them to a charity shop as I imagine they will sell this time of year and I often like to take William’s old clothes and toys in for them to be sold for a good purpose and go to a good home. I used to try and sell things on Facebook but it’s not worth it as everyone wants something for nothing whether they can afford it or not.

I guess what I really want to say to you all, is enjoy the up coming festive season in any which way you decide to celebrate it.

All my love 😘 M.x

Posted in Emotions

The Fall Down

Autumn is my favourite seasons. The leaves change, Hull fair snacks are readily available 😋 Halloween 🎃, Bonfire night 🔥 and Christmas🎄 are right around the corner. I can almost smell the fire smoke in the air. It slowly becoming acceptable to put the heating on and to start wearing woolly tights and boots. The clocks will go back and dark cosy nights with candles, blankets and movies are just around the corner.

But then again, I hate this season in equal measures, some days it can’t decide if its summer still and its too hot but its raining and there is no physical way to be dressed appropriately and, in my opinion, it is cold and flu season…. Traditionally this falls between December and March but in my house, it always starts in the September.

In this new world in which we live, you can imagine the first thing that comes to mind when you start coughing and sneezing all over the place and genuinely looking like the walking dead 💀 I can handle being poorly, I don’t handle it well, but I handle it 😂 William being poorly is a whole different ball game. He can’t tell me what’s wrong, so it is a guessing game from the moment his behaviour changes until he develops full symptoms… is it tonsilitis? Stomach problems? The flu? The thought process gets pretty dark… what if its measles? Did I see spots? What if its Corona? Or Ebola? Or the plague? Or maybe, just maybe, it’s just a common cold.

I know my reasoning is pretty extreme, but my point is that it’s just never possible to tell what is causing the issue until the issue itself become apparent. William reacts to many situations by shutting down, this means he will withdraw from almost everything, he will barely eat and will try to sleep for avoidance. This could be because he doesn’t want to do something like leave the house or partake in a certain activity but could also be because I had to trim his nails, stopped him eating carpet fibres or didn’t let him smear the contents of his nappy. In some instance it’s because he doesn’t feel well. How do we know the difference? There is one simple answer… we don’t!

Its purely a guessing game… I have to evaluate everything that has happened prior to his shutdown and try to figure out. This means I have to be ultra-conscious of what happens on a day to basis and must be switched on at all times. This still means I have to try isolate what could be the problem and act appropriately, if in fact any action is necessary. On some occasions, no matter how much I analyse what has happened, I get it wrong and its simply because he is coming down with something but with no prevalent symptoms, it is impossible to know until it fully hits him.

I’m not going lie, sometimes it’s exhausting and sometimes when he cries, I cry but that’s ok because it doesn’t mean I’m a bad mom or a failure. It means I am trying my best and that’s all we as parents can hope for.

Despite this I do love Fall just not the downs that come with it 🍂 xx

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Posted in Events & Holidays

Yule never guess what 🎄

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% NOT covid 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 😘

Posted in Brief updates

Writing more but posting less…

I just want to take this moment to say am truly sorry for the radio silence recently. I just wanted to give you a little update of what has being going on.
I decided that when William goes to school I want to make the most of my days off work and ideally would want to volunteer with children who are like William, I’m not sure how yet or where but I want to help people so I decided to do a Level 2 in autism understanding but sadly that means my free nights A.KA when William is asleep (or should be 😴) are currently being taken up with working on my assignments.

My first assignment was handed in and thankfully I have passed 🏆 So I just need to smash this next one out of the park to warrant a pass as a whole and who knows I may even decide to do further courses to develop my knowledge.

You will have my undivided attention again after 7th January when I can hopefully share my success with you all. I will be posting a William update over the christmas period but until then I wish you all a very merry christmas albeit a different kind to the one we are used to but a happy one nonetheless. 🎄

Much love as always, M & W xx

Posted in Appointments, Autism Assessment

Triage

Its not a word you would usually come across in day to day life.
When I think of it I used to be reminded of the scene in Pearl Harbour in which the nurses have to mark the wounded men with lipstick.

For us triage is part one of a much bigger process, a process that has consumed our lives and will continue to do so until William receives a diagnosis.
William’s triage appointment was today… As you can understand due to the current pandemic this appointment is not face to face but instead was done over the phone.

I’m not going to lie to you and tell you I slept well (or even at all) last night waiting for this call, the crazy irrational thoughts kept me awake…
‘what if they decide he doesn’t need to be on the waiting list and we have to start afresh in a different sector’
‘what if they say he is the way he is because we are shit parents’

What if I don’t say the right things?’

I know it’s irrational and crazy and so does Dave or at least that’s what he told me at daft o’clock this morning when I was still awake trying to ask Dr Google what they will be asking us.
Not that it helped any way as we couldn’t find a list of questions anywhere ❓❓❓Not very helpful for ridiculously anxious people like me who like to be prepared for everything.
This notebook (which I just had to find and get ready at for 4am to be prepared for a 10am call) has been with me to every appointment. The writing is messy and blurred from tears. Anybody but me would find it indecipherable but I take great comfort in knowing I have it and can refer to it when needed. It is like a comfort blanket and knowing I look over it to see what meetings we have had, what questions we have asked and what answers we have and have not received makes me feel like I am a better parent than I am.

The call came in literally as the clock ticked over to 10am, I was mid wee 😳 Appointments are never on time so I was sure this one would be the same. The woman was called Emma Gibson and she gave off good vibes if that makes sense. Pleasant to speak to, not too clinical and had a friendly tone to her voice.

So I made notes (shocking) in my little book about each question asked so that anyone reading this waiting for their triage appointment can have a rough guideline to take the anxiety off a little. Each lead to other questions so this will not be a comprehensive list.

  • When did you first notice something was wrong?
    Holy shit she went straight in there with the bullet to the head! 😔🔫
    As many of you will know already it took a long time for us to openly admit something was wrong with our child and it wasn’t until William was after 2 that we started writing about him publicly on Facebook to share our journey. It wasn’t that we were ashamed, we were frightened, not only thing things William would struggle with but of the stigma that comes with having a learning disability.
  • Who is in your household?
  • Is Dave Williams dad?
    I had to kick Dave to make sure he didn’t pull his usual not funny trick of saying ‘as far as I’m aware’ or ‘Yes or the milkman’s’ Honestly these jokes are almost as old as the one were he says he’s shagging my sister 🙄
  • Do you both work? Who’s the main breadwinner? What does he do for a living?
    Insert idle chit chat here about how the current pandemic is effecting him at work.
  • Has there been any history of trauma or domestic violence that may have impacted William?
    I had just kick Dave but that doesn’t count… No of course not 😇
  • Is there a history of autism in our family?
  • Is there a history of mental health issues?
    I explained about my lengthy battle with postnatal depression and anxiety and the medication I had been on and for how long. I’m not ashamed of it, in fact i’m proud. Although it took me a long time to seek help, I eventually did and came out the other side. Some people don’t.
  • What other agencies are involved with William?
    We then discussed things his paediatrician had put forward; blood testing and genetics testing and our next appointment.
    We discussed Lisa who liaises with the nursery in regards to his education.
  • Are social services involved?
    Eh? No!
  • What was my pregnancy like?
    We discussed how high risk it was, the lengthy induction, having an assisted labour, gestational diabetes, being in hospital longer than expected.
  • Is William on any medication?
  • Did you bond with William?
    Yes. No. Maybe? He didn’t really bond with me? He’s indifferent.
  • What was he like in meeting his milestones?
    Insert big head joke here and not sitting up until 10 months.
  • What were his first words? 🤐
  • What does him playing look like?
  • Does he make eye contact? If he does can he maintain it or is it fleeting?
  • Does he respond to his own name?
  • Does he indicate his emotions or pain with facial expressions? Let me tell you something… Justin Bonomo and Erik Seidel are amateurs compared to William when it comes to having a good poker face. I’ve let me nerd slip out again there. Justin and Erik are two of the most famous poker players in the world.
  • How does he behave with other kids at nursery?
  • Are there any children outside of nursery that he engages with?
  • What kind of support does he receive at nursery?
  • Am I OK to contact the nursery?
  • Does William recognise other peoples emotions?
  • What are Williams meltdowns like?
    Like a tornado ripping through my living room.
    Like stepping into the ring with Conor Mcgregor.
    Like trying to hold onto an oiled up contortionist.
  • What sensory issues does William suffer with?
  • What are the main indicators he is about to have a meltdown?
  • What are his eating habits like other than during meltdowns?
  • Does he show any signs of anxiety?
  • What is his sleep pattern like?
  • Are there any things he cant do in regards to his motor skills?
    Jump. Hop. Point. Wave. Clap.
  • What is he like with danger? or strangers?
    No sense of danger or recognition between familiar adults and strangers.
    That was it!
    Interrogation over.

She was happy that William had been referred to the right place and he will remain on the waiting list 🎉🎉🎉
Relief swept over me. Tears ran down my face.

What happens next?

A letter confirming this will be sent to all parties involved.
A team of specialised autism nurses will be on hand during our wait to answer any questions we may have.

The wait is currently between 2 and 2 and a half years. We will not be contacted until William is at the top of the list.
To put things into number which you know I enjoy, there are over 900 people in front of him in Hull alone. In order to them to bring their waiting time down they must assess a minimum of 8 people per week and I know a company called Healios have stepped in to alleviate some of the pressure but they can’t carry out all the assessments as they conduct theirs via video link and not all of those waiting would benefit from such an assessment.
The actual assessment is called ADOS (Autism Diagnostic Observation Schedule) and it is currently the standardised diagnostic tool for diagnosing ASD.
The ADOS process involves observations under controlled circumstances that other professionals are able to replicate.
Only trained professionals can administer the ADOS diagnostic screening, but it eliminates some of the differences of opinion otherwise possible when two different experts provide a diagnosis without following the same consensus in regards to what they should be looking for. Using the one set of clear guideline minimises the margin for misdiagnosis and errors.

When it is Williams turn for his assessment he will already be finishing his first term of his second year at school 📚 That is if they continue seeing people at their current rate.


November/December 2022 – What a brilliant Christmas gift that will be for us that year 🎄🎁

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 Emotions

Nothing is ever black or white, Its all Blue

Autism speaks! William doesn’t, but true love needs no words…

💙💙💙

But our son isn’t disabled…Have you ever been asked to admit something you aren’t quite ready for?

Today our Health Visitor came to go through DLA with us, This is to help us financially support William as he gets older and ensure all his needs are adequately met. I was warned that the forms are not pleasant. Well they are in fact 61 pages of hell!!! 😢

Is my son classed as disabled? I’ve only just plucked up the courage to tell people he has special needs, I know this is just me focusing on the wording but it stings to think that people will class him that way.

Getting hold of the form was hard. We went to the Wilson centre who told us to go to Jobcentre. We went to the Jobcentre to be told we needed PIP forms and to call a certain number… we don’t need PIP forms as he is under 16 but no we apparently needed PIP forms. WE DIDN’T!

There is no hiding from anything with the DLA form. Right from the beginning where it asks you to tell them what is wrong with your child and when did you notice? He has a severe developmental delay and I picked up on it from when he under a year old… It doesn’t give you the option to tell them you have your head in the sand for a year. That you were scared to admit it out loud.

There is then a full section about how he walks and gets around, which we aren’t allowed to fill in until he turns 3 so we will be doing it all again in March.

The rest of the section asks you to put time on things he can do or things you have to do for him and this is heartbreaking to fill in. I think the worst part was admitting how difficult bath times can be. He is fine sitting in water but as soon as we need to actually wash any part of him it becomes a traumatic experience. it can often be a 2 person job to bath him, one to hold him down so he doesnt hurt himself and one to wash him as adequately and quickly as possible.

We sent the form off and have a long wait ahead of us to find it if we are eligible, it can take 40 days for an initial answer and should his application be refused, we could send an appeal against their decision which will take more time.

Once again I can add this to the ever expanding list of things we are awaiting confirmation for…

Christmas Jumpers for our Sunday big nan visit

Its been a tough few weeks recently, William seems to have regressed in his behaviours and seems to be lashing out at me more than usual. Not his dad just me… what did I do? He purposely scratched my face when he was frustrated which I’m not going to lie hurt like a motherfucker! the valuable lesson I have taken from this is to make sure I keep his nails short however cutting them is an awful and thankless task. Imagine if an octopus had claws on each tentacle and you had to avoid 7 of them whilst pinning the other one down, that’s what its like cutting his nails. Except that the octopus is screaming and biting to get away from you.

Today we had a full on meltdown because I wouldn’t let him eat ‘another’ packet of Parma Violets. He went to find more and threw them all over the floor before throwing himself down too and refusing to get up… I tried to lift him but he’s very smart and makes himself go all floppy! considering developmentally he is less than a year old he does show some terrible two traits which we were told is a good sign (insert eye roll here 🙄)

His sleep is very disturbed now. From the moment we brought him home from the hospital he slept for 7pm until gone 10am and we had to wake him up not the other way round. People called us lucky. I don’t feel lucky anymore. He goes to his room at about 7 to 7.30pm and precedes to destroy his bedroom for a good hour or more. Draws opened and emptied, everything he can physically reach ends up on the floor and in pieces. Juice everywhere and if we are very ‘lucky’ he will often smear the contents of his nappy around the room. Three times this week we’ve had to hose the boy down in the shower and disinfect his room and carpets ready for the next day… we go through a lot of sheets and a lot of wash powder. The washing machine is always on.

William hums and seeks comfort in his clothing tags. His key worker has recently given him a lego chew brick so he can fulfil is oral sensitivity needs but keep his hands free to play.

This is most likely our last post until after the Christmas holidays so I want to end it on a positive note!

William has an appointment with a paediatric neurodevelopmental specialist in January 2020… this confirmation is correct and came after Sarah⭐our amazing health visitor called our GP due to the last referral debacle.

We hope you all have a very merry christmas & a happy new year! 🎄🥂