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 🥰

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Posted in school

Self doubt

I had a moment last Wednesday night… and when I say a moment I mean that I didn’t sleep through worry (or maybe it’s this cold 🤧)

I worry alot so this may not seem unusual but this was different, this wasn’t necessarily my usual kind of worry. This was more self doubt. I had fought to get William the right education for what feels like eternity, we got the school we chose but I started to panic that I was wrong. What If it wasn’t the right decision. What If I had fought so hard for the wrong thing.

This hadn’t come our of no where, it was because Williams dad and I were taking to his new school the following day and I had become immersed in this overwhelming fear that I was wrong. I can only compare it to one other feeling I had had previously and that was when I was pregnant, I was terrified that when I went for my first scan, there would be nothing there. It was that same kind of feeling! I spoke to other people about the scan feeling and I’m most definitely not the only one and I imagine my doubt about the school wasn’t just something I experienced but last Wednesday night I felt alone in my fear.

The Thursday morning was just as bad, whether is was the cold, my bad shoulder, the lack of sleep or the worry… maybe even a combination of all three but I didn’t stay still, I couldn’t eat or focus on anything other than watching the clock waiting for the time I needed to meet William and his dad. Let’s just put it this way… the saying is right. A watched clock does go slower. ⏰️

I had spoken to Williams teachers via email a few times over the last few weeks but it’s not the same as meeting face to face. The moment we arrived at the school, they put me at ease. They didn’t just fall in to SEN teaching, they are there because they are passionate about it, because its not just a job to them but a vocation. They know every child from noises they makr in the other room, from tiny footsteps or a stray sock on the floor. Other parents had given me glowing reports about the teachers too which all made sense once i met them. William immediately connected with them and just left us to go and spend time with his new classmates. I knew as soon as he did that, that all the worry was for nothing. It was 100% the right decision for William and I was right to fight so hard for it.

The school itself is perfection. Everything is laid out perfectly, there is structure to everything and more visuals than you can possibly imagine. It’s so accommodating for children like William. I would love to say I held it together but we all know that would be a lie. I sobbed at how perfect it was for Williams education, the fact that he will travel through the school and be safe and in the right environment until he turns 19 just gave me this overwhelming sense of relief and in a big headed way a sense of accomplishment. I did that. I fought and I acheived it. All the worry was gone and I felt proud of myself.

27 days. That’s all he has left until he joins his classmates and I can not wait. I’m so excited for him to be in an environment that will be so beneficial to his development.

Uniform all ready 🥰

It’s been a long time coming but it will be here in the blink of an eye and as confident as I feel about it, I know that come that date in April I will be an absolute mess.

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Posted in Appointments

Precautionary

Poorly kids are the worst! 😭 Actually, I take that back… a 7 and a half hour wait in our local children’s A&E is the worst.

William hasn’t been feeling well since the end of February when he got his first (of many) cases for tonsillitis. Antibiotics didn’t clear it after the first dose finished so 5 days later we were back at doctors for a second dose. 3 days after the second dose ended he was still poorly so on Monday his dad and I took him back to the doctors (I feel like we’ve seen them that much recently that they’re going to invite us round for dinner at Christmas 😳) the doctor said he was fine but tonsils still a bit sore but no longer infected, the give him pain relief and he would be fine.

Fast forward to Friday and I have to take him to chemist as he has conjunctivitis because let’s be honest, it never rains, its pours 🌧 Drops received and starting to be administered, let bare in mind that my shoulder has gone again so I’m fine this one handed… its not easy even with two hands. Friday evening William was lethargic, hot to touch and clingy and he had barely eaten or drank all day…Not to mention the waterfall of slimy vomit that came out of his mouth and all over me. Honestly it’s like my kid aims for me when he’s sick 😫

Like any parent I was worried and ring my own mom for advice and then rang 111 who told me to take him into A&E as soon as possible as a precaution. Luckily I have some amazing friends who are used to being on standby when it comes to getting William places in a hurry.

We arrived at A&E at 8.15pm. It was busy, super busy. Kids were screaming, adults were moaning really loudly about how long they had been waiting etc. One parent told me it was going to be a 5 hours wait… she was wrong 😭

I want to talk about the waiting room, firstly the chairs are not built for 7 and a half hour waits with a gimpy arm. But that’s not my gripe… my issue is how unfriendly the waiting room is for a child like William. The lights are super bright and loud, some of them were flickering.the waiting room is busy with colour. Lots of different colours and sparkly fish hanging from the ceiling and the air con is loud. For an autistic child with sensory processing disorder that is a lot to take in for a lengthy period of time. It’s a difficult wait for most children but I’m sure other towns have sensory rooms for children like William. I’m almost sure the eye hospital next door has one or were at least trying to raise funds for one. It was also a nightmare that only one person could accompany each child, I understand that there is a limit on space but William needs to be restrained to be examined and unfortunately its not ideal with two arms let alone one.

Anyway that’s my moan over… the nurses who triaged us were brilliant. So patient with William and understanding. The doctor we saw was also amazing. Thankfully William just has a viral infection which will pass with calpol and time and even though the wait was long and painful I’m glad we went. I’m glad I made the 111 call and followed their advice because really you just never know with any child what is wrong but when they can’t tell you, it’s so much worse.

Hopefully he will be better soon and can enjoy his last 2 days of nursery next week. 🤞

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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 🤣

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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 Emotions

Inclusion

Let’s talk about inclusion… as an adult, I can honestly say that I genuinely like my own company. It’s much harder to end up in an argument although not impossible. 🤣

We worry about our kids been included in the playground, getting invites for parties and things of the like but as a parent of a child with special needs inclusion is something we worry about for everything. Will I be able to navigate his adaptive stroller around that shop, do the disabled toilets have a suitable changing facility? Will that cafe or restaurant understand that he may be noisy and throw his food?

I feel uncomfortable in situations in which it is obvious that William is uncomfortable, it’s mainly because I still worry about what other people think and I’m not sure that will get go away but I hope it does.

I recently attended an event, or a gathering of sorts and I had the strangest experience, something that I have never experienced before; total all-encompassing inclusion and understanding. It sounds really strange to say this, but I have taken William to places that should have been safe for us, but they weren’t. I was terrified of doing a first new place/event, as I usually am because let’s face it, I can be the queen of anxiety and overthinking and believe me I had been doing a lot of it in the run up.  What if I William had a meltdown? What if people didn’t understand?

I panic about going to my parents or big nanna’s and they’re regular occurrences so its natural that I would panic about somewhere else, I often have my mom or my friend on a standby in case William doesn’t cope with new places or people and it’s a silly thing to think I have to do but it is just one of those things.

I guess what I am trying to say is sometimes you have to take that leap of faith, whether that is faith in a person, an event or yourself. If you’re not willing to try then how will you ever experience new things, how can you write people off as not understanding your child if you’re not giving them the opportunity to do so. In a world of people that can be judgmental and cruel, there are still people who are kind and accepting, people who include our children without trying.

Inclusion is something we all crave, whether we like to admit it or not, it can be in conversation at the dinner table, inclusion in a game of football on the park or in our case it’s the inclusion into society or inclusion into people’s lives. Its something we can take for granted when we are neurotypical, I know before having William it wasn’t something I even thought about but now the thoughts can be all consuming.

Today’s post it to simply say, think about what you are doing, think about the child that you may class as a little odd, think about birthday parties and events, think about how you would feel to be excluded, then think about how it would feel if the sole reason behind it, was because of who you were; something you have no control over.

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