Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Original poster

Handhold required- horrible day

80 replies

FatAmy123 · 31/08/2025 14:39

My youngest DS who’s 7 has severe ASD and ADHD, he’s behaviour and keeping him safe is absolutely breaking me. We’ve got safety gates and locks everywhere but he figures them out. I’ve got a tall gate on his bedroom door which he’s figured out how to open. This morning, he let himself out of the gate, went downstairs and climbed on a chair to enable him to unlock the front door and he left the house. He’s hyper fixated with cars and he wanted to look at some. Luckily I woke suddenly and could sense he wasn’t in his room. He was missing for 10 minutes but it felt like forever and I thought we’d lost him. He has no road safety skills or danger perception at all. My husband found him with no shoes on a good few roads away.
I feel physically sick and can’t stop crying. We’ve ordered extra locks, a chain and an alarm that sounds when the door opens.

My oldest DS is 19. He has type 1 diabetes and struggles with controlling it, although he’s a lot better than he was. 18 months ago he suffered such severe complications with it that he ended up in resus and we nearly lost him. Now he’s going to university in 3 weeks and I’m terrified. He’s got support in place for when he goes, and the university have been brilliant, but I’m still so scared.
After that incident this morning, my older DS had a really bad hypo and was really out of it.

Im so overwhelmed and upset. I just want them both to be safe.

OP posts:
PoppySaidYesIKnow · 31/08/2025 17:17

FatAmy123 · 31/08/2025 15:20

Thank you so much everyone.

@Mumof2amazingasdkiddosthank you for such a beautifully written response, you are right I guess we can’t know out precautions don’t work anymore till they don’t! Normally I’m aware when ds wakes, I feel like I’m good at that, but this morning I must have been so knackered I was still in a deep sleep!

@PoppySaidYesIKnowthank you for that, I will get in touch with the council asap. My sons school who are amazing referred me to a social worker previously because I told them my concerns about the safety aspects. I’m so exhausted with having to watch him constantly and the fact that literally everything has to be under lock and key or he will find it, eat it or break it. They weren’t very helpful at all, I asked for an assessment for a PA for some extra help as I’m
disabled myself. And they just said no because my husband earns a decent full time wage and we get DLA for ds. So I tried to get help privately with no success either. I hired someone who left after 1 session. It’s restless with no respite.

I’m so proud of DS1. He worked so hard to get into uni and he’s thrilled to get into his first choice. I’m excited for him. He’s got a phone assessment tomorrow with disabled services at the uni about what they’re putting in place for him so hopefully that’ll put my mind at ease more.

You should make a referral through Early Help (social care) and ask again for respite hours. You shouldn’t have to pay - it isn’t means tested so they’ve told you this incorrectly. You should be entitled to help through Dorect Payments regardless of income or other benefits. In addition, I think I’d ask for a TAF so that you can get all the agencies together, your school should be able to make a TAF referral. You deserve help, you’re a fantastic parent and you need a break.

x2boys · 31/08/2025 17:19

Foregone · 31/08/2025 17:14

@x2boys that's it. It hurts me. I don't think DS really notices as such. However, he was bullied by two toddlers at the beginning of the summer hols and he refused to go into the ball pit after so I do think he has some recollection or understanding of that type of behaviour. He just can't tell me, which just feels even worse.

Does it get easier or does it still hurt the same? I'm finding it harder right now because the disparity in mental ages are now is so noticeable to his peers it feels worse.

It gets easier in some ways it's very noticeable now that my son is disabled so we don't get many comments ,and I'm very protective of him so if anyone does say something I just move him away .

SumUp · 31/08/2025 17:19

No useful advice to add, but sending you a big hug x

Interested in this thread?

Then you might like threads about these subjects:

Families SEN
Laxonaweekend · 31/08/2025 17:22

I am concerned your 19 year went in to hypno following an incident whereby his brother was missing for 10 minutes?

ThePerkyEagle · 31/08/2025 17:23

FatAmy123 · 31/08/2025 14:39

My youngest DS who’s 7 has severe ASD and ADHD, he’s behaviour and keeping him safe is absolutely breaking me. We’ve got safety gates and locks everywhere but he figures them out. I’ve got a tall gate on his bedroom door which he’s figured out how to open. This morning, he let himself out of the gate, went downstairs and climbed on a chair to enable him to unlock the front door and he left the house. He’s hyper fixated with cars and he wanted to look at some. Luckily I woke suddenly and could sense he wasn’t in his room. He was missing for 10 minutes but it felt like forever and I thought we’d lost him. He has no road safety skills or danger perception at all. My husband found him with no shoes on a good few roads away.
I feel physically sick and can’t stop crying. We’ve ordered extra locks, a chain and an alarm that sounds when the door opens.

My oldest DS is 19. He has type 1 diabetes and struggles with controlling it, although he’s a lot better than he was. 18 months ago he suffered such severe complications with it that he ended up in resus and we nearly lost him. Now he’s going to university in 3 weeks and I’m terrified. He’s got support in place for when he goes, and the university have been brilliant, but I’m still so scared.
After that incident this morning, my older DS had a really bad hypo and was really out of it.

Im so overwhelmed and upset. I just want them both to be safe.

🫶🏼

DuckbilledSplatterPuff · 31/08/2025 17:28

justrelaxandsleep · 31/08/2025 14:46

So sorry. No advice but you sound like an excellent mum.

seconded. Hope you are feeling a bit better now OP.

Original poster
FatAmy123 · 31/08/2025 18:09

Laxonaweekend · 31/08/2025 17:22

I am concerned your 19 year went in to hypno following an incident whereby his brother was missing for 10 minutes?

We woke him to help my husband look for his brother, I’m disabled so I’m not as quick. Ds1 went on foot and my dh went in the car.
when he got home he injected insulin for some breakfast but then fell asleep before he ate it.

OP posts:
Laxonaweekend · 31/08/2025 18:10

FatAmy123 · 31/08/2025 18:09

We woke him to help my husband look for his brother, I’m disabled so I’m not as quick. Ds1 went on foot and my dh went in the car.
when he got home he injected insulin for some breakfast but then fell asleep before he ate it.

Show quote history

He should have been shaken awake to eat it

Original poster
FatAmy123 · 31/08/2025 18:12

Also adrenaline can cause your blood sugar to crash so that probably had an effect. He was also understandably upset.

OP posts:
ScaryM0nster · 31/08/2025 18:12

Laxonaweekend · 31/08/2025 18:10

He should have been shaken awake to eat it

Show quote history

If he’s about to go to university and live away from home, then it’s on him to manage.

If he’s not great at managing and getting distracted between injecting and eating then injecting immediately after food may be a better tactic.

Laxonaweekend · 31/08/2025 18:13

ScaryM0nster · 31/08/2025 18:12

If he’s about to go to university and live away from home, then it’s on him to manage.

If he’s not great at managing and getting distracted between injecting and eating then injecting immediately after food may be a better tactic.

Show quote history

I totally agree

but given he’s not managing it, I would shake him a wake rather than let him sleep to teach him some kind of dangerous lesson

Original poster
FatAmy123 · 31/08/2025 18:13

Laxonaweekend · 31/08/2025 18:10

He should have been shaken awake to eat it

Show quote history

i didn’t know he’d done it. He’s 19 so he makes his own toast usually

OP posts:
Laxonaweekend · 31/08/2025 18:15

FatAmy123 · 31/08/2025 18:12

Also adrenaline can cause your blood sugar to crash so that probably had an effect. He was also understandably upset.

So he needed to make even more sure that he was managing

I am very worried that he clearly isn’t remotely managing his serious condition and he’s about to go off to uni

will he be in halls or student flats?

Mumof2amazingasdkiddos · 31/08/2025 18:22

Alright can we maybe stop with the comments on the older DCs hypo today please? OP has had a real scare today and telling her that her older child who is about to leave home, which is scary enough without a medical condition, is not able to manage isn't going to be helping, it's kicking someone when they are down.
He normally manages it but today has been a shock to all their systems with the what ifs of younger DC going out exploring and not indicative of how he usually manages on a day to day basis.
@FatAmy123 take it as a learning opportunity for older DC that his schedule is about to change and that unexpected events are likely to pop up as he settles into Uni life so he needs to be a bit more "on it" with managing his blood sugars but focus more on the fact he usually manages it himself and that you and he are getting support put in place for him to help him continue to manage it, please don't spiral over future what ifs, stay focused on the actuals and the plans in place

Original poster
FatAmy123 · 31/08/2025 18:23

He wears a pump , so it wouldn’t normally be injecting. He’d taken it off to refill it. He’s in halls and has teams involved including a shared care diabetes teams covering both areas. Believe me I’m very very worried… I’ve clearly said that. But he’s an adult. I can’t ban him! He’s been deemed safe with the appropriate amendments so what am I meant to do?

OP posts:
CherryBake · 31/08/2025 18:26

My Sil has a severely autistic son , they keep the front door / back door locked at all times wearing the keys around their necks and beside them at night .

Original poster
FatAmy123 · 31/08/2025 18:51

Mumof2amazingasdkiddos · 31/08/2025 18:22

Alright can we maybe stop with the comments on the older DCs hypo today please? OP has had a real scare today and telling her that her older child who is about to leave home, which is scary enough without a medical condition, is not able to manage isn't going to be helping, it's kicking someone when they are down.
He normally manages it but today has been a shock to all their systems with the what ifs of younger DC going out exploring and not indicative of how he usually manages on a day to day basis.
@FatAmy123 take it as a learning opportunity for older DC that his schedule is about to change and that unexpected events are likely to pop up as he settles into Uni life so he needs to be a bit more "on it" with managing his blood sugars but focus more on the fact he usually manages it himself and that you and he are getting support put in place for him to help him continue to manage it, please don't spiral over future what ifs, stay focused on the actuals and the plans in place

Thank you!! It wasn’t a “normal day” for any of us. Normally I have had blood sugars on my phone and I will continue to do so even when he’s at uni. When you put a new sensor on it takes 1.5 hours to warm up and for that time you can’t see readings

OP posts:
Laxonaweekend · 31/08/2025 18:54

Pointing out that a 10 minute incident derailed the critical management of your son’s diabetes management is actually a very serious sign that he’s not ready to live independently - is not “having a go”.

Mumof2amazingasdkiddos · 31/08/2025 19:02

Come on @Laxonaweekend it was a pretty terrifying incident that would have left the three adults severely shaken (I've zero doubt younger DS was happily oblivious and just enjoyed his adventures!) Pointing out helpful ways of getting older DS to still manage his condition on a pump changeover when he gets interrupted by either a serious or even mundane event? No problem, but some PP are actively saying older DS can't manage it full stop without mummy being there and so basically she should be extremely worried once he leaves for uni is neither accurate nor helpful. I've known the terror of a missing child for a couple of minutes (and poor OP it was around 10 long terrifying minutes) she's asked for a handhold not a what if scenario of all the things that can go wrong living with a chronic condition, I'm sure she spends enough time worrying about that as it is

Sunholidays · 31/08/2025 19:05

Laxonaweekend · 31/08/2025 18:54

Pointing out that a 10 minute incident derailed the critical management of your son’s diabetes management is actually a very serious sign that he’s not ready to live independently - is not “having a go”.

HIs disabled brother was missing and his mother visibly upset - it wasn't just an incident.

Laxonaweekend · 31/08/2025 19:05

Maybe those downplaying don’t have any experience of diabetes type 1

Original poster
FatAmy123 · 31/08/2025 19:13

Well I have plenty of experience of it and admittedly my ds has always struggled. We’ve had counselling about his mental issues with it till it comes out our ears. He’s improved loads and he’s getting there. Hypos happen, as he reminded me when I was having a breakdown earlier, I haven’t needed to help him with a hypo since we lived in our old house which was about 2 years ago.

Even if I wanted to stop him going, I can’t. He’s an adult!!

OP posts:
flawlessflipper · 31/08/2025 19:15

Depending on what device DS1 has some overlap sensors. I don’t think it is officially advised but some do it.

Letsgoforaskip · 31/08/2025 19:53

Oh my goodness, poor all of you, what a day! I take my hat off to you; you sound a fabulous mum.
As others have said, please don’t berate yourself - it happened but he’s fine and now you will adapt. I’m sure we’ve all had to do that in a myriad of ways with our kids. I’m not at all surprised your other son had a hypo; of course that was a stressful incident (but still not your fault). It’s always scary letting kids move on and become more independent, even without the complications of diabetes, but it sounds as though you have put support in place and it’s his choice.
Please be kind to yourself. Today was a horrible day. I hope tomorrow is much better!

Xavier78 · 31/08/2025 20:01

Anyone would feel hugely overwhelmed.

You and DH have a solid plan and it will be okay 💐

I can only imagine the panic when you couldn't find him and it will take a little while for your adrenaline levels to go down and to feel normal again.

Hot, sweet tea or glass of wine and a bath.