Jesse & Me

Been such a long time since I last posted.. what a worldwind this year has been already…. 🥹

We are expecting our second baby. And Jesse will be a big brother to a little baby girl in October ❤️

A huge shock 100%, yet I’m intrigued to see how Jesse will interact with a sibling! It was genuinely something I had never considered due to his needs.I never thought I’d be able to cope with another baby, because our lives are rammed with appointments and genuinely Jesses behaviour can be hard to manage.

But I’m absolutely over the moon, we are as a family and it was obviously something that was ‘meant to be’.
Just thought I’d post, see if anyone can give me some peace of mind, that my little lad won’t feel too overwhelmed and I certainly don’t want him feeling pushed out, usual mum guilt is creeping over me every now and again.. I’m sure this is normal? ..

😂

I love this ❤️

A reminder for any parent/carer who needs to hear this today…
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Too often we’re our own harshest critic, blaming ourselves for every struggle our kids have.
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Someone else would be doing a better job. Someone who worked harder, knew more about autism, was richer, had more time, more patience, would understand what my child is trying to tell me.

I’ve been there. I’ve had those thoughts about myself soooo many times. Trust me. I get it.
⠀
Often, we just need time. As much as our kids are growing and developing, we’re doing exactly the same as a parent too. We’re learning about autism, about our kid’s sensory needs, how they communicate, what works and what doesn’t. Give yourself time.
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It will be ok. You’ve got this. Your child isn’t a failure and neither are you ❤️

We have gone on a family holiday again!
And honestly Jesse has loved every second so far. The plane journey was manageable. Had a few set backs as he didn’t like having to keep his belt on. And wanted to lick the passengers head in front 😑
Trying to change a four year olds nappy on a plane is NOT the one. Not disability friendly..
Our suitcases are full of safe foods, so we have about 5 outfits a piece 🫨 suitcase is busting with chocolate weetabix, organix bars and nutrigrain bars.
But Jesse is having the most amazing time. Even though it’s took a ton of organising, planning, patience we have done it!! And I’m so proud of our Jesse!

If you’re thinking I can’t take my child on holiday as it’s too much, you can do it! It’s so so worth it! Brave it and get yourself on that plane ✈️ ☀️☀️

We have gone into the new year with Jesse stopping eating. He has gradually ate less of his ‘safe foods’ over December especially at school but now he will refuse everything we usually give him other than chocolate weetabix with raspberries.

We have had issues with Jesse’s diet since he was very small, textures, smells, he gets hysterical. It causes such fear for him. He has to look at all the packaging, so he can see that it’s his food, he will only eat certain brands. It’s extremely difficult when out and about, I have to pack his lunch for anywhere we go and make sure there’s enough for however long we are out that day.

We even packed our suitcases with food when we went abroad ✈️
I’ll never recover from having to pay 6 euro for a family pack of cheese and onion walkers in lanzarote🫠😂

He’s been under a dietician for a long time now. And he’s just been accepted at Great Ormond Street to the feeding and eating disorders service.

Now I know Jesse has severe sensory issues, and food can be so distressing for him. And it’s distressing for me as his mum, I want him to eat nutritious meals.

We have had our appointment with Jesses regular dietician today and he was absolutely wild. It was probably one of the most difficult appointments I’ve taken him to.
But… it has to be done. And we need to get this sorted.

Just know if your going through this. Your not alone!

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It’s nearly 2024!!

2023, has been one with many firsts for my little man Jesse.

We have been on 2 beautiful family holidays with Jesse’s grandparents and aunt/uncle and cousins, we have made so many memories on days out with family and friends. We got his EHCP!! We have gone into full time nursery with his lovely 1:1. And Jess has been diagnosed this year, in fact it’s nearly been 1 whole year of having that diagnosis.

I think we have achieved so much this year and I am so proud of my lad. How much he’s grown and achieved this year has been unreal. I love the people we have got to know, I love the journey we are on together and I can’t wait for 2024.

Here’s to more memories being made, making even more friends and celebrating our baby’s for exactly who they are!

❤️

Hope you all have a good one,
Happy new year guys!! X

Liv!

My little Jesse turned 4 yesterday!!! 🎉🎈🎄

He was spoilt rotten, but got very overwhelmed when opening presents, it took him a long time to process what was going on. The wrapping paper and the unboxing of the presents was not the one! It annoyed him.

We had a really nice day overall though, and we have now got a two week break off of melatonin to reset and I’m absolutely shattered 👀 he’s only just dropped off.

Shortbreaks with Nicky tomorrow, so no doubt he will absolutely love it, I’m craving a little bit of normality, is anyone else? I can’t look at another chocolate 🍫 🤣

Hope you’ve all had the most fantastic Christmas’s..

Liv x

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We’ve been to see Santa! 🎅🏻❤️

Me and the lad, went to the play village at mapplewell to see Santa, and what a lovely time we had.

It was lovely for Jesse to run around and have fun, with no queing required, this obviously sometimes tips him over the edge, he was abit of a fidget when meeting Santa and struggled paying attention but he did amazing and was smiling. That’s all that matters 🙂

The only downside was my toothache meaning I couldn’t scoff my gigantic mince pie, I was fuming! 🥧 😂

Hope everyone is well and looking forward to Christmas Day!! 🎄 🎅🏻

Just a mum post.. I know some people will just get it.

Jesse hasn’t been sleeping well recently so I’ve been letting him in my bed trying to settle him and get him back off to sleep for whatever time is possible. The frustration is another level..

Anyway, I lay him in bed this morning and I squish myself in to bed at the side of him (he’s made it clear my side of the bed is where he’s laying and he isn’t moving to let me in) and I don’t know if anyone else’s child makes their own little noises, but Jesse’s has always made ‘cooing like noises’ very unique noises when he’s content. And I’m rubbing his leg and cuddling him, and he shimmy’s out my grip presses his forehead onto mine and rubs my arm back so gentle, whilst cooing away. (It’s adorable to listen to)

Now im always worrying, as a person im a worrier and after having Jesse, I’ve lost so many friends, lost my job, lost the old me, and I worry, about where I should be sometimes, who am I, now im Jesse’s mum?
Where do I fit? As Jesse has ASD and learning delays etc, life won’t follow the path that maybe a lot of mums follow..

And even though i am absolutely exhausted I know, without a doubt, I’m right where I need to be, messy hair, no makeup, no sense of style, abit chunky, right where i need to be. 😂

I sometimes take forgranted just how special my life is with Jesse in it and although it’s hard and the majority of the time, I’m crying, worried, ranting away. It’s special and amazing and genuinely the most content I’ve ever felt.

But just know, if you’re feeling lonely and isolated, wondering who you are from time to time, I’m right there with you!

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📸

HE’S LOOKING AT THE CAMERA 👀

Jesses first big school photo has come back, and he looks absolutely beautiful 🥹 minus the huge bruise on his head, so we have ordered them today.

Looking super grown up! And he’s actually looking at the camera which is amazing!

Can’t wait to get these up on the wall ❤️

Feeling festive 🎅🏻🎄❄️

We decided to do the Christmas train ride at Pugneys. It was so cute. They even got a little Christmas bell as a keepsake. 🔔

And the highlight for me was Jesse wore a hat, and actually kept it on. To try gloves again next!!
Couldn’t believe my eyeballs 👀

When receiving your gift, Santa comes over and speaks to you. We thought ‘oh Christ here we go’ he’s going to go ballistic when he comes up close, but we explained this to the staff and they were so gentle. Jesse loved the bell. He shook it all the way back to the car 🥹

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Got a poorly prince today,

He’s been sick majority of morning and now he’s having a little snooze 😴

I absolutely hate when Jesse gets a sickness bug as he’s petrified of the actual sick which makes it so difficult for me to catch in a bowl and dispose of as he’s usually shoving me and the bowl away, and to get him to calm down as it triggers a massive meltdown.

I always get him straight in the bath as this really helps him self soothe and stops the hysterical screaming and echolalia, and if he’s sick it doesn’t matter as it can all be washed away.

I absolutely hate him being poorly, but he’s wanted nothing but cuddles today and I’m not going to lie I love that as he normally likes to be left alone!

Hopefully it’s just a 24hr thing.

I hope everyone is well today and feeling the Xmas vibes coming through now we are in December! 🎄❤️

Absolutely love these ❤️

We have gone out for tea tonight, something we never do, as it’s not Jesses cup of tea, but he’s been as good as gold today and managed so well. We weren’t out long but it was nice to get out and do something abit different!

* and I absolutely loved not having to wash the pots 😂🧽*
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It’s so hard to get photos of both me & Jess together, here’s one from the weekend ❤️

School photos tomorrow for our Jess, so it’s been haircut day! ✂️

We have put it off after last time due to the amount of stress it caused Jess, but his hair looked like an overgrown conifer, so we have had no choice but to get it off!

The last time he had it cut, we took Jesse to the salon where my sister Charlotte works, and the meltdown was unreal, me and his dad had no choice but to restrain him for his own safety and to get it over and done with as quickly as possible. I felt so much pressure in salon, nobody wants to 1. Listen to a child scream and cry, and 2. I often wonder what people think when we do have to hold him firmly to get it over with, do they think I’m hurting him? Do they think he’s a bad behaved child? Do I need to inform them he has additional needs? All these things run through my mind.

So today we have decided to have it done at home, we thought this would be a more relaxing environment, where he would have his comforts like his iPad and Lego. Unfortunately it didn’t go well, he was the same again, screaming and beside himself, even with the quiet clippers we bought, he just didn’t want to be touched. The relationship Jesse has with his auntie is beautiful, throughout cutting his hair she gave him lots of breaks, letting him dip a comb into a glass of water (Jesse is water obsessed), he gave her a few kisses throughout having it done, and you can see he’s comfortable with her as she has that type of relationship with him, she doesn’t rush him and let’s him take his time, but again his sensory issues where just too much for him to process having his head touched.

I forget how distressing it can be for charl aswell, I live with Jesse everyday and we have to brush his teeth and wash his face even though he doesn’t like it, these things just have to be done, but for her it was upsetting. She didn’t want him to feel as though she was trying to frighten him.

But it’s done! And I think he looks so handsome and grown up!
Until next time..

❤️

Had a lovely day out at the National Coal Mining Museum today with the kids, and the weather definitely got me feeling festive! ☃️ Is there anything better than getting wrapped up in hats and scarfs and big winter coats 🧣❄️

Although it was a fantastic day today, Jesse has been extra emotional, can’t quite put my finger on why? The meltdowns have been continuous and relentless.
But we have still had a fantastic day otherwise, and I’ve met some lovely people, it just gos to show there is some knowledge of autism out there!

A lovely lady offered us somewhere quiet to sit away from the busy cafeteria and have some lunch, the only downside to this was there was no signal, the panic I feel when Jesse can’t watch his iPad or use my phone is real! 😂 and the poor bairn was so frustrated, I met a lovely mum who gave me so many compliments, I’ve never had that off a stranger before. She was so interested in Jesse and his ways, it really put me at ease, and the fact he was bombing past her little ones didn’t phase her one bit, this helped me feel like I was able to breathe. I do hold my breath in social situations waiting for someone to comment on his behaviour, but didn’t feel like this today!

I think the highlight of the day was listening to the brass band play Christmas carols, Jesse was in a trance, watching and listening. He really enjoys music. So I am glad he got to sit and enjoy that!

* also tried the “hobbledehoo” reins which were a god send when Jesse decided to throw himself to the ground as there’s a handle at both front and back to help pick him up safely! Definitely recommend as Jesse is also a runner, he will be legging it whenever he gets a chance. They are for children aged 1-7, which I thinks amazing as obviously a lot of reins are only sized up for younger children! Perfect for send children who don’t have that awareness of danger but want to walk or again, like to scarper!*

Would definitely recommend the national coal mining museum, as there’s tons to do, and you can do it on a budget, as it’s a free to walk around the grounds and as we all know it’s a dear do sometimes taking kids out for the day. Again if they don’t like it, you’ve not wasted a load of money!

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Speech and Language appointment for our Jesse today.

Because he’s my first baby, I forget how behind he is, I forget that children his age speak, they can ask for a snack or a drink, they can call people by there names.
It’s appointments like that, that it can really hit home..
And I would be lying if I said it didn’t hurt me.

I would love to be called mum, I would love to know how he feels when he’s poorly, or when he’s hungry, without having to guess and get frustrated and more to the point watch him get so frustrated because I don’t get it right straight away. It would prevent so many tears on both parts.

But he is who is he.
And I love him for that!
Got to keep working towards a better form of communication, so I see today as a positive.

You never know one day I might be praying for him to stop saying ‘mum, mam, mammy’ 😂😂

Hope everyone is well today! ❤️

After numerous failed attempts in getting Jesse in his own room, tonight is the night, ive even thrown away his extra large travel crib away just in case I crumble.

Jesse is happy and content in his bedroom, he loves having the room to lay on his bed, with his tv on, also clutching his iPad 😂, the sensory overload is killing me just thinking about it. But he enjoys both, so that’s what he gets.

Getting to sleep is fine, but when waking up during the night and he see’s I’m not there, that’s when the nightmare begins, I don’t think the term ‘meltdown’ even cuts it.
I’ve sat for up to 2 hours, trying to console and settle him, it’s awful to watch and normally ends with me crying along with him.

Every time I have tried, I’ve gave in because of this reason and the fact that because he’s up so much during the night even with melatonin, I was absolutely drained and found it hard to keep up the next day, and with a child as full on as Jesse I needed to be on the ball.

But I’ve decided enough is enough. He’s nearly 4 years old, and has to be able to sleep in his own room. I’m taking it back to basics, and getting him a new and well established routine if it kills me. 😂

Please pray for me 😂

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Epilepsy

What does it mean to us?

It means 4 weekly blood tests.

It means 3 different medications.

It means watching and listening all the time.

It means a rescue medication.

It means getting enough sleep.

It means being scared.

This post is a bit ironic today because I had already planned it and Max has had a 3 minute seizure this morning.

Sheffield children’s hospital visit today for Jesses sleep and respiratory clinic..

Jesse has been on melatonin quite a long time now and is currently having 10mls to keep him asleep throughout the night. And even then he’s up at around 5am.

Today we are trying a different version of the melatonin, which we have tried previously but at a lower dose, fingers crossed we see some improvement on the higher dose🤞🏻

Jesse was frantic today, he didn’t want to be touched and was hysterical from the moment he got weighed and measured. He just knew something was off.

I absolutely hate seeing him that way! It was to the point where it set my anxiety off that bad, I could barely string a sentence together when I got inside the consultation room.
If I had one wish it would be to comfort him in these situations, can you imagine going into a room, not understanding why, having people touch you and no way of asking why or that you don’t like it. All of your trust being solely in your parent.

It must be terrifying!

But we have done it now. And he’s having a bubble bath with some toys to chill out and unwind.
My bathroom looks like Metrodome 😂🆘

Anything to make the lad happy.

I’m not going to lie this week I’ve really struggled with Jesses behaviour, he’s super strong, giddy and so strongwilled, when he wants to go, he’s off!

This week he’s started spitting, watching his spit drop out of his mouth and rubbing his feet in it. And out of all places he decided he wanted to do it, it was in the Dr’s Surgery. I could have quite easily slid off my chair and joined him on the floor where he spent the majority of his time screaming and throwing himself about. I just wanted to hide at this point, there were just eyes scattered around the waiting room, looking directly at us... 🙃

I’m always beating myself up, thinking I could do better, be more patient, do more, in whatever way that is. And I know so many mums do this…
I forget to see the bigger picture sometimes.

As he gets bigger, little things like the supermarket shop, getting him dressed, brushing his teeth and hair, even getting him in the car from the house, are all things that take so much time.. and yet still have to be done.

I have felt deflated this week, out of sorts most likely as we are back at school and the holidays have come to an end. I’ve noticed Jesse has probably been feeling this way too and that’s most likely why his behaviour has been hard to manage.
Jesse dos like routine and I must admit, so do I!

I think the moral of the story this week is that, it’s okay to struggle, it’s okay to feel a little lost, we don’t have to be perfect to be doing a good job! ❤️

I hope everyone else is doing well after the holidays, and if anyone else is feeling this way, it’s okay and you’re not alone!

Don’t go beating yourself up!

❤️

Due to personal circumstances I have decided to keep this group a virtual group, and not have an in-person group running at the moment.

Hope everyone’s week is going well so far after the half term break ❤️

Liv.

X

Groups on this morning, if anyone would like to come along ❤️

Stimming/self-stimulating behaviour.

From a young age, I noticed that Jesse displayed a wide range of behaviours that I’d never seen any child do before. I noticed, fluttery fingers, he will stare at his hands watching his fingers, holding them up and watching them from different angles especially in the light, he will spin, either on his hands and knees or stood, he will look out the corner of his eye flicking his eye back and fourth, he will slam the back of his heels down in a kicking like motion on ANY surface,it could be on the concrete outside and he will continuously kick. He likes to close his eyes for long periods of time and scrunch up his face, and vocally stim which for Jesse is breathing in and out extremely fast. He also makes repetitive noises and presents with echolalia.
I never knew anything about ‘stimming’ and what it meant. As a first time mum, I had never heard of it.

Watching Jesse develop, I’ve noticed that these behaviours are more severe when he’s at his happiest, the only behaviour that is really present when upset is echolalia with words and the repetition of sounds.

When learning about these types of behaviours it can differ from one person to the next. In no way am I saying all autistic individuals are just like Jess.

When looking at Jesse, I am filled with love, I can’t imagine my lad any other way, I am so fascinated with how he interacts with the world around him.

I think people need to know more about ‘stimming-self stimulating behaviours’ what it is, and what it can mean for those individuals?

Can anyone else relate?

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I found this account on both faceboook and instagram with some fantastic info about autism.
Mrs Speechie P

The end of half term and it should have been back to school today but Max has had his Metabolic appointment at Sheffield Childrens Hospital this morning and bloods for his homocysteine levels and his CBD.

We also bumped into his previous Neurologist in the carpark the one who ticked the magic amino acids box on the blood test that lead to diagnosis.

Happy Monday everyone 🥰

Groups back on next Tuesday at Carlton Parish Hall, 10:00-11:30.

Please feel free to bob in and have a chat ❤️

X

What a lovely day we have had, getting some fresh air after a week’s worth of rain ☔️

We have had a day out at cannon hall farm, we’ve switched it up this time, as we normally go inside the farm and decided to walk around the grounds.

It’s been fab!
We started off with the forbidden forest and sensory trail, which was brilliant and accessible with Jesses disability pram, an absolute god send as I never know when he’s going to drop or want picking up and with his size now, I can’t manage for long. So was impressed with that.
We had a little wonder inside the museum, which I loved!
Had a bite to eat and a browse inside the farm shop and garden centre!

Jesse is full of cold so was a little quieter than usual, but had a fantastic day overall, was lovely to get outside. 🍁🍂🌳🌲

Hope everyone’s half term has gone well, and let me know what adventures you’ve been on if you get chance, it’s always nice to see what others have been up to.

X

It’s blown my mind how there’s so many individuals with different dietary needs, because it’s not something I think of day to day.. what an interesting insight into Sophia’s meal planning for her two boys!