Posted in Emotions

Fog

I’m not really sure about where to start with this post… I’ve had a bit of a block recently. I’ve been updating our Facebook page but not much else. I guess I’m a little blocked.

It’s not that I have nothing to write about but more than I can’t put things into focus. The best way I can describe it, is that my head is fuzzy.

I’m finding it difficult to understand how I am feeling, why I am feeling certain ways and I’m not really thinking rationally about day to day things. I’ve not hidden it, I’ve been honest about how I’m feeling and some days I can feel the fog lifting.

I didn’t want any of my fuzziness to infect my posts which is why I have been a little M.I.A recently. Writing things down is my way of processing things, I don’t share everything I write as some of it is just to vent but recently my writing hasn’t been consistent, it hasn’t been cathartic when I jot things down, uts been irratic and angry and I don’t know why.

I guess what I’m trying to say is that we are ok, William is thriving at school, Liam and I are doing great and we are now living together. Little Miss is still as sassy as ever, Sundays are still days for Big Nanna and the world is still turning.

Hopefully the fog lifts soon and I can get back to some more consistent and therapeutic writing but until then look out for sparodic posts that may not be on track with my usual style of writing.

Much love, M xx

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Emotions

Visiting time.

What is the difference between quality time and obligated time?

Quality time is basically time spent together in which the focus is on enjoying said time, whereas obligated time is time spent together in which you partake in because you feel like you owe that person or that you have a moral sense of duty.

When you have a baby, you get inundated with visitors… people wanting cuddles and to compare who he looks more like. Dad’s nose, Moms’ eyes, Grandpas strong chin etc etc but they also want cups of tea and conversation, I am sure I am not the only one who thought this, but I had just pushed (with great difficulty I might add) a watermelon out of my vag, I don’t want to make cups of tea or endure conversation. I want to sleep whilst all my bits realign and get my head straight, but we are too polite to say this at the time, and when I say we, I mean new moms; we are vulnerable, emotional and tired, soo fucking tired. I let guests overrun my house to the point I took my new-born baby upstairs to feed him on multiple occasions because I didn’t feel comfortable enough to breastfeed in front of most of these people. How fucked up is that? I felt obligated to entertain all these people under the guise that they were family or friends but that’s ok because those people are going to be around forever, right? Wrong!

As time goes on, the novelty of a baby wears off…. People don’t visit as much as they did in the beginning which is super shitty as you just start feeling somewhat normal and by this stage you could use some adult company. You are at that stage in which you want to ask those questions like, should my boobs be that sore? Will I be able to poop without crying? When will I know why he’s crying? When does the love come? Ok so maybe not the last one as I was no where near ready to admit that back then, but you get the point.

I’ve touched on this slow retreat of people in a few other posts but today I’m focusing on the excessive retreat when people realise your child isn’t like other children. I am the first to admit that before I had come to terms with the fact my child was like other children that I retreated from my friends who also had children, not all of them but some… we don’t speak about it (well I mention it all the time) but that unspoken competition of who’s child is better drove me further into my mental health breakdown but there were some who didn’t engage in this nonsense in which I felt comfortable spending time with. The re-treat of these competitive moms was my own doing and I do not regret it in the slightest. It was what I felt was best for my family.

William’s baby book is full of photos labelled ‘First time meeting so and so’ when in reality 80% of those photos should say ‘First and last time with so and so. I am grateful that William won’t remember these people, but I will and I will remember the feeling when it dawned on my that these people didn’t care, we were insignificant parts in their lives despite us presuming they are main characters in ours.

Christmas and Birthdays, people pop up and disappear again out of what I imagine is some form of obligation, their comments rings in my ears… ‘It’s like he doesn’t know me, William I’m you’re so and so’ of course he doesn’t know you! He has seen you about 10 times since he was born! It gets me really angry because I would put money on it that some of these people will think it is due to his disabilities but its not. The people in his life who see him frequently get a very loving and excitable reaction from him. These visits dwindle, to Christmas but not his Birthday, every other Christmas to barely ever.

I’m not really sure what spurred on this rant as it’s been hovering around in my notebook for a few months, I guess I am just tired, tired of wasting my precious time on people who only feel obligated to see us but actually have no interest in William or myself. I would much rather people are honest as time is precious and I don’t want to waste it on people who aren’t worth it.

Take a look at this photo.

This is a five year old boy spending time with his Big Nanna whom we visit every week for quality time, she doesn’t have us over because she feels like she has to, she has us over because she enjoys spending time with us and it’s something I have done long before William was born. We don’t go because she wants us to, we go because we love spending time together and she cooks a banging sunday dinner🍗

William knows that on a Sunday, he sees his Big Nan. As soon as he can see her house, he starts running off… he knows exactly where he is going, lets himself in, makes his way to the biscuit tin, then grabs a toy or book and takes up his spot on the sofa.

Big Nanna is inundated with cuddles, love and affection throughout the day and it genuinely brings me so much joy to see. I think to me this photo shows exactly what quality time is.

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Events & Holidays

The 1st Family Holiday 2022

I’ve said it a few times but i’m saying it again, I am really trying to be more open to taking William to experience new things so, in for a penny, in for a pound as they say. Instead of another day out. We booked a weekend away! Talk about going from one extreme to another but you know me, I like to jump in with both feet and then act like I’m drowning 🤣

We booked a little cabin near Malton, Coopers Cabin to be precise. If you click the image it should take you to the link.

Coopers Cabin, Malton Grange Lodges

The cabin itself was lovely, although there was a slight hiccup when we got there, it hadn’t been cleaned which meant we couldn’t relax, they sent a lady (Louise) who was brilliant and compensated with a bottle of prosecco but the whole situation put a massive dampener of the start of our holiday especially with the kids already having a super long day and then not being able to settle down straight away. It’s also made me a bit worried about getting our security deposit back, because the cabin wasn’t as thoroughly cleaned as it usually would have been, I am concerned anything the previous occupiers may have done with impact us especially the hot tub as they state that if the filters need changing they will hold back the deposit, I highly doubt that the filters were checked and we notice there was scum around the filter entrance… we shall see what happens with the deposit. They have been asking me review them already but I shall wait until the money is back in my account.

The cabin was spacious and had a master bedroom with ensuite, a second bedroom with 2 single beds which Wilster and I shared and a pull out double (ish) sofa bed in the lounge. As you may be aware from our usual ‘Annual Hobman Family Holidays’ sharing a room with William is not ideal but its also not always horrendous. He woke me up the first morning by prying my eyelids open and trying to shove my glasses on my face whilst laughing like a physcopath, Thats was 3am… 😴 needless to say I mad my way to the spare sofa. The following day he woke me up by doing was I can only describe as physio, he was stretching and bending my legs and then quicky switched to torture by pulling my big toe and other toes in seperate directions but he also climbed onto my back at one point and fell back to sleep so it’s not all bad and I relish in that moment he wants me as comfort to go to sleep as it doesn’t happen very often.

I worried about taking William on a train but I embraced it and we were lucky enough to catch the Pickering steam train up to Goathland (Heartbeat Land) It was the trains first run out in three months due to the track side fires caused by the immense heat this summer. Sadly it was pulled off after our trip due to an issue with the coal so we were doubly lucky. The noise, smells, movements and people were all things I had thought about before taking the leap, not to mention Williams chair. I would like to give a big shout out to the staff at NYMR especially Adrian Sartain (not sure if I have spelt that right) but he was amazing and really looked after us and put me at ease on what was an anxiety inducing journey for me. I tweeted NYMR so that they would pass my thanks on to him.

I’m not sure why I was so worried because William often surprises me, I have an amazing video of William laughing and giggling whilst I will post to our facebook page. He thoroughly love the journey and proved once again that new experiences aren’t always a bad thing and don’t require my overthinking and stressing (not that I will ever stop) He is constantly surprising me, keeping me on my toes and not always in a bad way haha 🤣

Have you ever felt like an outsider? like you don’t really belong somewhere, having to try hard to fit in but never really doing so… I guess it’s the true sign of an introvert. Believe it or not this statement isn’t about William, it’s about me. I can honestly say that this weekend I truly felt a part of something. I felt so at peace just sat with my new extended family and talking about rubbish, being honest about parenthood, my relationship and not feeling judged in the slightest. I felt accepted without the pressures I have faced in the past to behave as those around me do. Not only did I feel accepted and welcomed but I know that William felt it too, Just look at these pictures and see how comfortable he was.

Our next excursion was Flamingo land, again I was worried. He likes the fair that comes to Hull but its not as expensive and easier to get home and back to his comfort zone.
The first thing I will say, is that it’s soo fucking expensive! We should have pre-booked but because the weather was due to be torrential, we chose not to and boy was that a mistake. £50 per person is daylight robbery especially for a 5 year old!

Flamingo Land has changed alot since I last went (about 18 years ago😱) but fundamentally it’s the same.
Little Miss absolutely loved it, she wanted to go on every single ride but sadly she isn’t called Little Miss for no reason and she was too small to go on the majority of the ones that took her fancy. The log flume was the one she was most looking forward to and she was too dinky, her dad did sneakily stand her in the splash zone at the side of the ride so that they got sprayed as the ride hit the water. I think she took it as a good consolation but we have vowed to take her back next year but measure her before as she needs to 3.6ft tall.
There were plenty of rides aimed at her age height group but they weren’t as daredevilish as she likes.

That being said, she did have an amazing time and thoroughly enjoyed the experience, including going round the zoo section.
Williams experience is a little more difficult to explain, he coped really well being inside the park but I don’t believe he got a great deal of enjoyment from it, at one point he even had a nap but then again I’m not surprised since he had woken me at 3am 🙄 He’s really hard to read during these situations so he could have really enjoyed, could have just tolerated it but I know he didn’t hate it as he always makes that clearly known 🤣

We ate out on both nights at The Smithy Arms, clicking their name will take you to their facebook page, I highly recommend them as their menu was varied, portion sizes plentiful (although if you order fish & chips, don’t be alarmed if half a battered whale turns up🐋) and their food was very tasty without charging the earth. The kids menu was brilliant (every kids meal included dessert) and they were very accomodating for William in his chair. If we book again for next year we will most definitely go back.

Our first holiday in my eyes was a huge success, don’t get me wrong, it was really nice to get home and relax but I would go back in a heartbeat and do it all again… And now starts the countdown to our next adventure 🥰

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Emotions, Open Letters

Prejudice

This started as an open letter but the more I have written the more I think it’s not, its ranty like a standard post so I’m unsure how to categorise it 🤷‍♀️

There are people out there who are prejudice against disabled children, people who may not be aware they are prejudice and some people that think it is acceptable to stereotype and judge without basing these feelings on facts or first-hand experience. There are many times in which William is judged like this and it is absolutely disgusting and genuinely makes me feel physically sick. Especially when it is by people that have in fact spent time with him no matter how little or how much.

There any many times William is purposely singled out and excluded from events and parties because of his disabilities. Sometimes this happens because people have misconceptions about him and his needs, these people are too arrogant or lazy to ask questions or educate themselves. Sometimes it happens for Williams own protection or comfort. As Williams Mom it is my job to advocate for him and make sure people around him understand him but if those people already have misconceptions about his needs, I cannot help. It isn’t just my job to advocate, it’s also his dad’s, both of our respective partners and anyone else who has a big part in William’s life. However, recently I am wondering if we have failed? Are we allowing people to make assumptions about William because we haven’t done enough? Is this a collective failure? Or a personal one to me? Or can you just not educate stupid people?

Believe it or not Williams needs do not have to limit him. William loves parties and events, actually let me clarify that, he loves cake, balloons, and the people he is closest to which tend to be a big part of all occasions. There are factors he may not cope with too well such as changes to his routine or loud noises but as his mom, I have learnt to handle this and how to neutralise (I’m not sure if this is the word I’m looking for) William’s discomfort and make situations more comfortable for him. However, it is not my responsibility to make other people more comfortable around him when they make no effort to understand him.

Your children will not catch William’s disabilities, in fact your child would learn to understand them and be accepting of all others and potentially have an understanding that I myself as a child did not have, in fact I didn’t have it up until my late 20’s. How brilliant would it be if this generation of children had a broader understanding of all disabilities, of people’s neurological differences and a better level of acceptance. Why would we not want our children to be better than we were?

Williams needs do not impact other children, William has needs in which are destructive to himself, not anyone else. I may have taken on occasion, a foot to the face, bite to the shoulder or thigh, but I am doing things in which he struggles with, administering medicine, changing his continence wear, stopping him from eating unsuitable items or restraining him to prevent him causing injury to himself. A child around William would never be in that position as there is no reason for them to be doing those things to him. Yet neurotypical children in the past have bitten or smacked William purely because he had a toy they wanted, or he wouldn’t play with them in a certain way or just because they could, but I do not judge those children based on this… Maybe I should? Maybe I should judge the parents?

William can be a handful, I can’t lie about that, nor would I want to but as he has grown, my ability and knowledge of his needs have too. Although there are a handful of people who know how to tend to his needs, the majority of the time, I am more than capable of doing this myself and its frankly downright insulting that people may think otherwise but don’t get me wrong, I do need a break sometimes but doesn’t any parent?

Having my child in your child’s life would not negatively impact your child in any way shape or form. William doesn’t show love as often as a neurotypical child or in the same ways, but he loves with all his heart and is hurt in the same manor in which other children may be hurt and I’m not talking physically.

I have spent time with neurotypical children who can be more of a handful than William due to things such as separation anxiety, over tiredness, being generally naughty or having tantrums because they can’t get their own way but let me translate these things into William’s versions.

He have never suffered from separation anxiety, as long as his needs are met, he is happy to be with his dad, myself or any other caregiver, no issue there because when he was younger, we made sure that he spent adequate time with everyone and didn’t solely rely on a single person as that would have created a straw for our own backs.

Over-tiredness? What is that? My kid can sleep through a tornado or have a house dropped on him and he would remain asleep. When he is tired, he will literally just go and lay down and go to sleep. Sometimes he doesn’t even make it to a bed or sofa and will sleep anywhere. Even if he has done this during the day he will happily be in his room from bedtime until he is tired. No fuss, no crying, no demands for attention or toys etc, although sometimes he gets both.

William can be naughty, all children can. He will touch the TV and laugh when he is told no. I will take his toy from him because its bedtime and he will duck under my arms and go back to grab it, but he doesn’t hit, scratch, nip or bite when he is naughty or mischievous like some other children do. I’m not saying it won’t happen in the future but in over 5 years it hasn’t happened yet.

Tantrums again fall into the category in which all kids can have them, William’s tantrums last seconds, when he realises, he isn’t immediately getting what he wants, he gets bored and walks away. Tantrum over. I have been around neurotypical children who can have a tantrum that can last hours. When I say tantrum, I mean tantrum. A meltdown is something completely different. A tantrum is purposeful behaviour in children and therefore can be shaped by rewarding desired behaviours, a bit like how you train a dog 🤣 whereas a meltdown is involuntary and cannot be stopped by rewarding the child or giving into demands because a meltdown doesn’t happen because he can’t get what he wants. Tantrums slowly go away as a child grows up (although some of my ex’s prove otherwise 😂), but meltdowns may never go away. If my child is having a meltdown, it is because he is pain, either physically or mentally not because he wants an ice-pop or something of the like.

Looking at these things in comparison, which child needs more attention? Should I be concerned about the neurotypical children in William’s life? Should I restrict access? There is only one answer, no. why? Because I’m not a cunt.

I don’t judge children based on their behaviour but maybe I should judge their parents? If that’s what people deem acceptable maybe I should jump on the bandwagon?

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS