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.💚

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 Appointments, Brief updates

Wheelchair services

It’s been almost 2 years in the making but today, Williams new adaptive stroller finally arrived.

If I start from the beginning, we asked for a referral via our health visitor who put the request through our doctors. Who lost it after a year despite me chasing it repeatedly 🙄

A second referral was put through after weeks of chasing our doctor… apparently there is only 1 doctor for everyone in Hull or at least that’s how CHCP make me feel.

Let’s just point out that in this time he had fully outgrown a standard stroller and I had purchased a second hand adaptive Maclaren Major Elite stroller specifically designed for children from 6 months to approximately 8 years. It was expensive but worth it and William was comfortable and safe. It wasn’t going to last us forever but would do until we got sorted because let’s remember, covid fucked us in regard to appointments and referrals for the last 2 years.

The actual appointment with wheelchair service came much later, in fact it was October last year. Williams dad took him and he was assessed by a clinician, a clinician who decided that a Maclaren chair wasn’t suitable and he wouldn’t issue one for us but would look at a PWB which is a personal wheelchair budget and we could potentially gets a different stroller as long as its deemed suitable. Brilliant!

Fast forward 2 weeks and there is a fucking wheelchair sat in my hallway!

The delivery guy came and I turned him away. This wasn’t right for my son. We had discussed the issues with a wheelchair like this, in ridiculous depth with the PWB worker but she sent the chair back and I was forced to accept it. It just took up space in my already crowded office.

They all agreed it wasn’t suitable for Williams need so why was it sent? Why would they not collect it claiming it would leave William without suitable provision. That whole scenario was just mind numbing. How could a self propelled wheelchair be suitable for William? There was exposed velcro which would cause him sensory problems. Plus many many more issues including hygiene and safety with William being able to access the wheels.

The woman who dealt with us said she was referring it back to a clinician to get us a Tendercare Snazzi stroller but then she left NRS and it was handed over to someone different. The gent who took over ignored all calls and emails and only came back to me after I went on social media and Trustpilot publicly shaming them for failing to assist my son. Then he was suddenly able to reply to my multitude of emails.

Suddenly a Maclaren was suitable but they couldn’t provide one due to stocking issues but they can offer me the Tendercare Snazzi. I immediately accepted it and queried when delivery would take place and collection of the chair. I felt the Snazzi was suitable for his needs and that’s all that mattered.

But wait…

The Snazzi is out of stock 🤔 but they can offer me an off brand Maclaren knockoff or a Tendercare Snappi. The PWB guy told me to take the knockoff as similar to what we asked for… you know the one they were telling me wasn’t suitable for my 4 year old but designed for much younger 🙄 Needless to say I declined this option and went for the Snappi.

And based on his face… I made the right decision.

It’s been a long wait and it’s been worth it in the end but there shouldn’t have been a such a wait at all. There are so many failings in the NHS in regard to referrals themselves and again with services such as NRS. I hope they take my trustpilot review on board and look into what went wrong so that no one else goes through the heartache of chasing a service or even just replies that aren’t coming.

Apologies for spelling and grammar etc but I’ve wrote this one on my mobile 🤣

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

Its our birthday! 🎈

And just like that, we turn 2 (well yesterday to be precise) 😊

It’s been a crazy 2 years, we’ve been read in 59 countries, we have 3 social media pages (links below), our story has been featured in online magazines, newspapers and other peoples blogs, there have been many ups and downs but sharing it with you all has made things so much easier and I am grateful to each and every one of our readers.

WORLD DOMINATION MAP

Here are the top 10 countries in which we are read in

  • United Kingdom 🇬🇧
  • USA 🇺🇸
  • Australia 🇦🇺
  • China 🇨🇳
  • Malta 🇲🇹
  • Ireland 🇮🇪
  • Spain 🇪🇸
  • Germany 🇩🇪
  • Canada 🇨🇦
  • Cambodia 🇰🇭

I think the best way to end our little celebratory post is to share our most popular posts in the last 2 years.

all our love 😘 M.x

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

My own journey

8th January 2018

Look at this girl and analyse what you are seeing. A happy young mom holding her sleeping baby posing for her husband to take a photo… but that’s not whats really happening here.

It was my first day back at work after almost a year off. I woke up early, did my hair and make up to plaster over the cracks of how I was truly feeling.

I remember feeling relief as I left the house; like a huge weight was lifted off my shoulders. I could finally be away from William. My job has always been a constant in my life, since I was 17 so I felt like I was going back to do something I was really good at and since that wasn’t how I felt about being a mom, it made me really happy.

Only it wasn’t a relief, things had changed and people had left and I couldn’t focus on any one task. I was now part time and there weren’t enough hours in a day. I was constantly chasing my own tail. I remember coming home and faking excited to see William… I should have missed him. I held him close whilst he nodded off and had a little cry because ‘I missed him’ only I cried because I didnt. I cried for me. Not for him.

‘Take a picture Dave’ I don’t have many pictures of William and I over his first 2 years purely because I was alway the one behind the camera (This made post separation purging a nightmare🤣) I felt it was important to take a picture and prove that I was OK. That I was happy. Its silly isn’t it, that’s what this social media age has done to us. I think that’s why on here I try to be as honest and open as possible.

I’m not ashamed to say I was I was spiralling down a very dark hole and ended up at a stage I couldn’t see the light. I worried about my family dying when there was nothing wrong with them but the thought consumed me and kept me awake at night, I couldn’t cope with the changes is my career and found myself struggling to do the most simple of tasks but faking it with a smile and a cheery attitude. William was missing his milestones and I thought it was my fault, did I do something wrong during pregnancy? Was it because I didn’t love him enough? I began focusing on the fact that he might be taken away from me, social services would somehow get involved and take one look at me and know that it was my fault.

William was 18 months old and I had reached a point in which I felt like things would be better if I wasn’t around anymore by the time I sought help. I spoke to the doctor and just sobbed, I don’t know how he could possibly understand what I was saying but he listened and offered me help and I personally chose to be medicated, Sertraline to help with my depression and Propranolol for anxiety. It was hard, really hard and I came off them early and I wasn’t ready and soon spiraled back down that hole but I knew… I knew I wasn’t ready and went straight back to the doctor and this time when I thought I was ready, we slowly weaned off them and it worked.

For two years I have been off all medication and coping well. I have embraced that darkness I felt and can happily share my story. William is my word and the love I have for him was always there but was hidden by the storm clouds in my head. It didn’t flood in immediately but bit by bit as the clouds cleared, just like the sun does… it creeped through.

I know that Williams delays and medical issues are not my fault, that I did everything right when pregnant and that I loved him unconditionally from the moment I saw him on my scan and that even though I didn’t feel it, he did. He knew I loved him and still knows now.

There are days, even now in which I feel a darkness but speaking to people and being open about it really helps. This blog saved me as did all of you who read it, whether its ever post or just one. Each of you help me overcome every hurdle, every obstacle just by allowing me a platform to rant and cry about how I feel. Sometimes about myself or sometimes about the system that fails us.

Thank you and if anyone needs to talk please get in touch, with me, with a friend, a doctor. Don’t keep it to yourself. Darkness isn’t as lonely if you have someone by your side.🥰

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 Brief updates

Being social

Back in May we decided to open up our lives even further by branching out onto several social media platforms to reach a broader audience and share smaller updates.

Please click on any of the logos to see our pages and if you like what you see please Like, follow and share.

Find us on Twitter by clicking the logo 🙂
This one for Facebook 🙂
And finally… This one for Instagram 🙂

Much love, the Buckley’s 😘

Posted in Emotions

Shame!

I want to talk about shame and I don’t mean the shame I have spoken about previously in which we blamed ourselves or where we weren’t willing to admit anything was wrong. The kind of shame I want to talk about today is the type others try to inflict upon you for the decisions you make.

And in what I can only describe as in true Cersei Lannister style I am not sorry!

When you open yourself up like we have you kind of expect everyone to have an opinion and believe me the internet isn’t full of sunshine and roses. Its a place were someone can remain annonymous, write hurtful things and suffer no reprecussions.

Our first instance was within three months of setting up the blog, we had no social pages other than our personal ones in which we shared the blog to our friends and family, we were never the type of people to add strangers on our accounts. Within those months things went really well and we gained a few followers, a few subscribes and it felt like we made difference by sharing our story. It was maybe December/January time when I recieved a message.
‘nobody cares’
Maybe you arent trying hard enough to teach him’
you feel guilty coz it id your fault’ (actually spelt coz, are we 12 and limited to characters again?)

By this time we had grown stronger in our acceptance and I deleted it and haven’t given it a seconds thought until now but could you imagine if that was to someone more fragile than us? Someone looking for reassurance or hell even guidance!

Fast forward to May and the wonderful Beth (Check her out here) designed a logo for our blog and our newly established social media pages. A lady commented to tell me about my use of the puzzle piece and how it is a hate symbol for autistic people.
I appreciated being educated but I also felt like I was being told off. Like I was doing wrong so far into our journey and I should know better.
The puzzle piece implies that they don’t fit in, that there is something missing or that they are a puzzle to be solved. Due to the juvenile type of picture commonly used it can also lead people to believe it is something that only effects children. Like its a bad haircut they grow out of.

I absolutely love the puzzle piece symbols which is why it was incorporated into our logo, I see it as a beacon of hope for William. He is a piece of this world that fits perfectly but we just need to find the right place for him. Its not about changing him but how the world sees people like him. To try and make it a better place not only for our autistic children to grow up into but for all children and that message I can imagine is very important to a lot of people.

The infinity symbol is supposed to represent math and a love of numbers, something shared by many people on the autism spectrum (I do think this statement is a massive sweeping generalisation) but not all, so far William has no association with math of any kind so to me this one isn’t as personal to us as the puzzle piece. It is also used signify inclusiveness and the integration of people with autism into general society, since there is no beginning or end to the sign. I just don’t feel anything towards it like I do the puzzle piece. I look at it and think of tattoos loads of people in their 20s and 30s now regret (mines a tramp stamp 🤣)but I don’t look at it and feel hope, I feel nothing.

And now I bring us to present day….

As a family we have always been open and honest which is why it hit us hard when we struggled to open up about William’s difficulties because it was so unlike us.
There are pictures and stories about me online that I have no shame in sharing and same goes for David. I have always been willing to share my dark days, my good days and days in which I’m just an absolute airhead and say or do something that is just inconceivable for someone of my age and education.

for example here is me in a pair of pyjamas (which at the time I felt were wholly acceptable as an adult) trying to frighten Dave by being a bear 🐻 GRRR

I love and hate twitter with equal measure. I shared an anecdote about how our little boy laughs uncontrollably if you tell him to stop touching his diddle, this was accompanied with a beautiful little gif (check it out on our Facebook page here)
Twitter always opens up the floor for trolls and/or unsolicited advice and 2 men decided to tell me that I should not post these kinds of things because I would damage him when he is older, because facial recognition is soo good now that he will be identified putting a risk to any future employment… Let me tell you something, there are pictures of my passed out drunk in a field at 14 years old and I still have a good job. There are pictures of Dave in drag (as a work event for one of his Saturday jobs?) and he too has a very good job.
When William is able, I expect him to take over our pages and continue to share stories of his life just like we have our own for years with Piczo sites, Myspace, Beebo, Facebook, Twitter, Instagram and many others that have been and gone.

I want him to continue to tell the world and show them how he has grown and how he navigates life, the good and the bad. Funny anecdotes a plenty! If he decides he doesn’t want to or wants it deleted then I am happy with that too.

Much love as always, The Buckley’s 😘

Posted in Autism In The News

Back to the pound… part 2🐶

MYKA STAUFFER! The more I read about this woman the angrier I get. How could she give up a child like he was a stray dog?!

If you haven’t read our original post on Myka Stauffer here it is

Back to the pound 🐶

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

She implied to the word that she had ‘re-homed’ Huxley to a new mommy but turns out that apparently Huxley is in the US foster care system! And let’s face it even here in the UK we haven’t heard great things about that system. This means his current situation and new mommy may not even be permanent. Another traumatic upheaval for a little boy who deserves so much more. There is even rumour spreading round the internet that the re-homing was less official especially since the state of Ohio have announced his in not in their custody.
When a parent (and I use this term loosely) decides they can no longer look after their adoptive child they go through an official vetted process called adoption dissolution. As it was Myka who used the term re-homed it may be that the process was not done officially and that they used the wildly criticised and unsafe underground method which is called… you guessed it… Re-Homing!!!

I have re-watched the video announcement, because you know, I felt my blood pressure wasn’t high enough and I just wanted to torture myself. She states in the video that the doctors told her he needed more, implying that they told her he needed re-homing.

She then discusses this “secret” about Huxley and how they can’t discuss in detail for his privacy and in fear of messing up his future? Well I’m sorry but they’ve shared every aspect of that child’s life including the fact he has bitten and pinched his siblings. By saying this repeatedly in the video it is implying that it is Huxley’s fault that she gave up on him. Including a video of him having a meltdown.

In a comment on one of her videos she also states Huxley wanted to be re-homed and constantly chose his new family instead of the Stauffer’s. He also apparently signed and showed lots of emotion to show he wanted to be with them. Let’s also bare in mind that Huxley is non verbal and only has limited use of signs.
There is no way in fucking hell he would be able to knowingly agree to or want this let alone tell them he wants this.

Obviously this was everyone’s fault but theirs! It feels a little bit like the blame game. There full video about re-homing Huxley wasn’t even about Huxley but instead all about Myka just like all her other posts about their kids.

This post has resurfaced and people are slating her for it and I despise myself for this but at the time of writing this she was asking for guidance and it’s not fair for people to use that against her.
William, as you guys will be aware is really food orientated to a degree in which it is obsessive. He loves food and doesn’t understand the difference between his food and anyone else’s. I noticed in one of Myka’s videos that she was using treats to help Huxley learn signs; this is a method our key worked advised us to use to help William make eye contact. Unfortunately as soon as William sees the food he goes into meltdown even if he doesn’t want to eat it.

There are numerous other theories out there as to why Huxley was re-homed however based on some footage which has surface I’m beginning to think he should have been removed from their care before they gave him up. There is footage of Huxley showing his hands taped so he is unable to suck his thumb. I wonder if they did this to their biological children.

Babies have natural rooting and sucking reflexes, which can cause them to put their thumbs or fingers into their mouths — sometimes even before birth. Because thumb sucking makes babies feel secure, some babies might eventually develop a habit of thumb sucking when they’re in need of soothing or going to sleep. This can be used as coping mechanism.

Thumb sucking for autistic children can be stimming behaviour, stimming is short for self-stimulating behaviours. It is also known as “stereotypical repetitive” behaviours.
Therapists class stimming as a protective response to being overly sensitive to environmental stress. For example, a child starts to flap his hands when he is in a noisy shopping centre.  Stimming is less reported when a child is engaged in activities that they like. In this case, stimming is recognised as an activity to occupy them while they are bored. Stimming is also viewed as a form of cause and effect play.
One of William’s stimming behaviours includes sucking on clothes tags, we purchased something amazing for William so that his hands could be free for him to explore the world around him. Its called a Chew Buddy. Link below for you guys to check them out.

https://www.amazon.co.uk/Chewbuddy-CBA81RAB-Pack-of-2/dp/B00KLDO5PW/ref=sr_1_1?dchild=1&keywords=chew+buddy&qid=1591114956&sr=8-1

TheKillerDoll on YouTube discusses how it is blatantly obvious how they used Huxley to boost their channels and how they treat him differently to their biological children. Check out her video here. https://www.youtube.com/watch?v=IVcdwG17Rhc

The Stauffer family don’t seem to be leaving the headlines any time soon, especially as more and more skeletons are falling out of their closest, the YouTube community are turning against them, their sponsors have cut ties with them, their subscribers are dwindling and now at 706k, she has been caught out buying Instagram followers, I’m a YouTube novice so I wonder if she has bought viewers too?