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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:
Mischance · 01/09/2025 14:25

My GD's university have been very supportive in relation to her health problems. The team there will have had diabetic students before and will put systems in place.
I can understand your worries, but he has to fly free with this at some point. I hope the uni can reassure you. It's a good halfway house between home and living totally independently. Hope it all goes well.

FatAmy123 · 01/09/2025 14:34

Thank you @Mischancethat’s what I hope, I think it’ll be more supported than if he was just moving into his own flat 2 hours from home. He’s been having calls with various teams today and they seem very on it which makes me feel better ☺️

in terms of DS2, I’ve contacted his school safeguard lead who’s been so helpful in the past asking if she can put me in touch with the appropriate team to get an assessment done because or council website is rubbish and the links don’t work. Dh has also fitted a new chain on the door.
I still feel very fragile and wobbly. I’ve got a life long condition myself and 2 months ago I had infusion treatment that gives me a lot of relief from symptoms and added strength. Unfortunately it’s temporary relief and I think it’s wearing off 👎🏼 just in need of a very big rest!

OP posts:
Starlight7080 · 01/09/2025 14:41

You sound like a very nice mum. I have family and friends whose children have done this same thing. One ended up at a Tesco express to get sweets.
All genuinely didnt think the kids new how to unlock the front door. And made adjustments and never happened again.
Just for fire safety reasons still keep front door keys near the front door . But obviously somewhere your ds cant get them.

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FatAmy123 · 01/09/2025 22:53

I spoke to soon when I said earlier things felt better.

im losing my rag with DS2. His behaviour today has been awful. We can’t have anything, he’s broken my storage in my bedroom, he’s constantly trying to eat things he shouldn’t (not food), he’s still trying to get at the keys, He’s been screaming, wouldn’t settle or sit calmly tonight, he’s been shouting at me. I’m just so so done.

i also earlier casually looked online for mattress toppers for DS1 and when finding out the bed measurements I saw a picture of his halls. I’ve seen it before obviously, but for some reason it sent me spiralling :-(

OP posts:
murasaki · 01/09/2025 23:08

As long as undue pressure isn't put in his flatmates to monitor him, its not fair on them. He's going to have to be more diligent and work with the university services, but I'd be worried he's not mature enough yet.

FatAmy123 · 01/09/2025 23:12

Hence why I’m spiralling. But what can I do? I can’t stop him going. He’s a grown up who very much thinks he’s ready and has worked towards this for 3 years.

OP posts:
FatAmy123 · 01/09/2025 23:15

There won’t be any pressure on the other students in halls. he’s had a meeting about 24 hour help in the form of an app. There’s also apparently an alarm system connected to first aid that they can put in place

OP posts:
murasaki · 01/09/2025 23:15

It's a tricky one, I totally get why you are worried. How far away from you will he be? He really needs to understand how serious it is. I'd be worrying too. I guess the only thing you can do is hammer it home to him that he needs to be more responsible, set alarms, work with the systems the University has in place.

murasaki · 01/09/2025 23:16

FatAmy123 · 01/09/2025 23:15

There won’t be any pressure on the other students in halls. he’s had a meeting about 24 hour help in the form of an app. There’s also apparently an alarm system connected to first aid that they can put in place

That sounds reassuring. Absolutely he should get his chance he's worked hard for, but he has to engage too. Sounds like the University has good plans.

TheCurious0range · 01/09/2025 23:22

Just for some small reassurance OP , I lived with someone with type 1 diabetes at uni, didn't know them from Adam, this was long before apps and pumps etc and her family were abroad. We were all absolutely fine to be part of her emergency plan, I got quite into a habit of carrying jelly babies in my bag just in case and we had a 24hr number to call if she/we were worried, the uni were really good and sent someone to the house to talk to us, it was completely optional but no one in the house minded, they went through some basic first aid type stuff for her and gave us little booklets to keep and refer to. She's still a good friend now and I graduated 20 years ago.

murasaki · 01/09/2025 23:25

Is it it worth him having a set time to check in with you each day for the first couple of weeks or so if only a message, might help with the worry. Just a 6pm 'hi mum' text or something? Then drop it after a bit?

Talipesmum · 01/09/2025 23:46

TheCurious0range · 01/09/2025 23:22

Just for some small reassurance OP , I lived with someone with type 1 diabetes at uni, didn't know them from Adam, this was long before apps and pumps etc and her family were abroad. We were all absolutely fine to be part of her emergency plan, I got quite into a habit of carrying jelly babies in my bag just in case and we had a 24hr number to call if she/we were worried, the uni were really good and sent someone to the house to talk to us, it was completely optional but no one in the house minded, they went through some basic first aid type stuff for her and gave us little booklets to keep and refer to. She's still a good friend now and I graduated 20 years ago.

Similar story for me. Guy at my uni in house shares etc was diabetic, he told us about it early on and we just kept an eye out for him, not in a parental type way or anything, just the way you look out for a friend. Reminded him occasionally to check blood sugars, understood how eating and insulin reacted and other triggers, helped him get sugar tablets if needed etc. He had a few swings etc but it was all manageable even when v pissed. We all looked out for each other. And that was way before any of the more modern monitoring systems.

FatAmy123 · 01/09/2025 23:50

Thank you @TheCurious0rangethst helps a lot ☺️ it’s really lovely you were all like that. Ds’s friends he hangs around with now are good, they’ve picked up the basics of what to do if he hypos. Ironically, apart from yesterday, it isn’t usually hypos that cause him issues. He has a tendency to run high more often than low. Which is still as dangerous, but I often builds over a longer period of time. He still has hypos obviously, but he’s normally very hypo aware. One of his current friendship group is going to the same uni which is just over 2 hours away from us.

@murasakii think the checking in is a good idea. When he’s been away with friends I’ve asked him to just send me anything, even if it’s just a thumbs up emoji! He is pretty good at keeping in touch. He is very mature and capable in a lot of aspects of life, but his diabetes has always been a big sticking point. I don’t think he’s ever really accepted it deep down and it’s affected his relationship with food. It’s so hard strike a balance because I want to be involved with these meetings etc but he doesn’t want me to “helicopter parent” (as he calls it 🙄) and he wants to understandably sort it himself.

My logical thoughts say he’ll be fine. And if he’s not fine, then he/we reevaluate. However logical thoughts are not present much currently 🫣

OP posts:
murasaki · 01/09/2025 23:52

I bet re logical thoughts given what's just happened and the fact he's going away soon, out into the world. If you suggest the checking in daily is just for a bit he might be OK, and a thumbs up is fine!

Emmafuller79 · 02/09/2025 00:23

Your not alone! Nearly all Kids that age act like your youngest kid only if they can get away with it! But as the mum you need to have solid rules and consequences or he will keep acting out! Are you gentle parenting him? it sounds like his got cabin fever and needs to go out a lot! Is he getting enough outings? How about holiday clubs? having school friends over ? Why the baby gates for a child that age? 🤔

sorry I have no advise for your adult children.🥰

x2boys · 02/09/2025 00:55

FatAmy123 · 01/09/2025 23:50

Thank you @TheCurious0rangethst helps a lot ☺️ it’s really lovely you were all like that. Ds’s friends he hangs around with now are good, they’ve picked up the basics of what to do if he hypos. Ironically, apart from yesterday, it isn’t usually hypos that cause him issues. He has a tendency to run high more often than low. Which is still as dangerous, but I often builds over a longer period of time. He still has hypos obviously, but he’s normally very hypo aware. One of his current friendship group is going to the same uni which is just over 2 hours away from us.

@murasakii think the checking in is a good idea. When he’s been away with friends I’ve asked him to just send me anything, even if it’s just a thumbs up emoji! He is pretty good at keeping in touch. He is very mature and capable in a lot of aspects of life, but his diabetes has always been a big sticking point. I don’t think he’s ever really accepted it deep down and it’s affected his relationship with food. It’s so hard strike a balance because I want to be involved with these meetings etc but he doesn’t want me to “helicopter parent” (as he calls it 🙄) and he wants to understandably sort it himself.

My logical thoughts say he’ll be fine. And if he’s not fine, then he/we reevaluate. However logical thoughts are not present much currently 🫣

I completely get how worried you are my nearly 19 year old is an insulin dependent Diabetic and he's a bugger for not waking up for his Dexcom going off 🙄fortunately he's still living at home for the time being but I worry all the time
My youngest is also severely autistic thankfully he seems to have grown out of trying to escape ,but it's not easy ..

FatAmy123 · 02/09/2025 08:48

@Emmafuller79No gentle parenting here. I mean, I’m not a strict parent particularly, but he has clear boundaries. The problem is he doesn’t understand them. He might be 7 in years, but mentally he’s a lot younger. I feel like I’ve had a toddler for a very long time because mentally, that’s where he is in some ways. He’s very intelligent academically (in some areas) but socially and emotionally he’s still a very young child. That’s why we have the baby gates he cannot keep himself safe and has no danger perception at all.

He definitely needs lots of outings and we do try to accommodate this as best we can, I try to get him out at least once a day. It’s just never enough. Today we’re going to soft play, so hopefully he’ll run off some steam. We do have a decent garden so he’s got outdoor space but again he has have some watching all the time. He’s ADHD is very severe, he has no impulse control. He’ll try to eat stuff in the garden (sensory seeking) and try to get stuff out of the bins etc. if he can get to them. I love him with all my heart, but it’s just totally exhausting.

OP posts:
mismomary · 02/09/2025 08:53

Just wanted to say you are wonderful. Totally understand the stress and overwhelm but I honestly think you are doing as well as anyone could do and should be patting yourself on the back for everything that you get right. Have a little think about all the stuff you've got right today.

Letsgoforaskip · 02/09/2025 10:01

100% agree with @mismomary . You are doing brilliantly. It sounds as though the uni are on the case with your son and you are giving your other son a wonderful childhood. I worked with young people with sensory needs and understand how full on and intense that can be. The difference is, I went home at the end of the day and could switch off and I appreciate you don’t have that. Even when we were attentive sometimes things went wrong. I remember when one boy ran into another classroom and got his hand in a jar of honey that was in a cupboard. It was all fine but it was scary!
Parenting is the biggest challenge ever but your love shines through.

FatAmy123 · 02/09/2025 10:35

Thank you so much @mismomaryand @Letsgoforaskipi really appreciate that. I don’t feel it, I feel spread really thinly and absolutely knackered! 😂 I also have 2 DDs that are in between my DSs aged 14 and 17 and I worry that they aren’t getting enough of our time although we have been on days out one on one over the summer and we are close. I do think DS2 affects everyone though bless him. They love him too but I know that they get frustrated with his behaviour and upset by incidents like Sunday.

OP posts:
Letsgoforaskip · 02/09/2025 10:42

I think most parents feel they don’t give each of their children the attention they would like to. I know I felt like that. It’s great that you have managed one on one time with the others. All any of us can do is our best and, although their frustration is understandable, they will see that you are doing everything you can. My mother always said you have to give your kids what they each need and that’s not always the same. It is really difficult when one child gets so much focus. I have had similar guilt but it was necessary.

Lougle · 02/09/2025 10:50

@FatAmy123 when my DD1 was young and similar, we had to resort to an electromagnetic lock - you site a push button high up on the wall. It's very hard for a small person to be able to push the button and push down a door handle at the same time. It was the only thing that kept DD1 safe.

Letsgoforaskip · 02/09/2025 11:19

Just wanted to add that I grew up with a lot of siblings and I’m sure at times we each felt overlooked. However, now as an adult, I appreciate all the benefits of that and definitely feel those outweighed the disadvantages.

Emmafuller79 · 04/09/2025 03:14

FatAmy123 · 02/09/2025 08:48

@Emmafuller79No gentle parenting here. I mean, I’m not a strict parent particularly, but he has clear boundaries. The problem is he doesn’t understand them. He might be 7 in years, but mentally he’s a lot younger. I feel like I’ve had a toddler for a very long time because mentally, that’s where he is in some ways. He’s very intelligent academically (in some areas) but socially and emotionally he’s still a very young child. That’s why we have the baby gates he cannot keep himself safe and has no danger perception at all.

He definitely needs lots of outings and we do try to accommodate this as best we can, I try to get him out at least once a day. It’s just never enough. Today we’re going to soft play, so hopefully he’ll run off some steam. We do have a decent garden so he’s got outdoor space but again he has have some watching all the time. He’s ADHD is very severe, he has no impulse control. He’ll try to eat stuff in the garden (sensory seeking) and try to get stuff out of the bins etc. if he can get to them. I love him with all my heart, but it’s just totally exhausting.

You don’t say how many children
you have. if its only one you shouldn’t be exhausted !

its nice you got a garden and do outings.
but I no of family’s who got a lot less then you and still manage there kids loads better . Im
talking about family’s living in flats with
no gardens.

My house is only 2 bedroom / tiny back yard. But my friends think we rich which we aren’t but to them we are! I tell my kids we is better of then lots of are friends and value what we got.

Could you tell your son there’s kids worse of then him so he should be thankfull for what his got. You need to work on boundary’s and consequence’s also! 👍

TheLivelyViper · 04/09/2025 06:48

Emmafuller79 · 04/09/2025 03:14

You don’t say how many children
you have. if its only one you shouldn’t be exhausted !

its nice you got a garden and do outings.
but I no of family’s who got a lot less then you and still manage there kids loads better . Im
talking about family’s living in flats with
no gardens.

My house is only 2 bedroom / tiny back yard. But my friends think we rich which we aren’t but to them we are! I tell my kids we is better of then lots of are friends and value what we got.

Could you tell your son there’s kids worse of then him so he should be thankfull for what his got. You need to work on boundary’s and consequence’s also! 👍

Someone can be exhausted with one child, they have other things going on, work, perhaps caring for a parent, perhaps financial stress, perhaps chronic illness, or just exhaustion, she doesn't have to justify her exhaustion or meet a certain threshold of life situations to be allowed to say she's exhausted, t's not a competition. OP also said the has 4 kids.

Plus, OP has a kid with SEN which is likely more exhausting than a parent of multiple kids with no SEN. He can't just be better, he needs more support (from school and other resources), the reason she wants to take him out is to a safer place, that makes sense. She doesn't want him to get stuff from the bin etc, OP would have to only be watching him if she let him play in the garden. He likely has issues with impulsiveness and also is having lots of incidents where he's running around the house or banning into things, so getting him out to something like soft play could help to get all his energy out but in a safe environment.

It's not the same as kids who don't have those needs, but don't have a garden, I understand what you're saying those families manage, but her kid has different, more present needs. Plus it doesn't mean those families wouldn't like that, or wouldn't benefit from that, even if they 'manage' it might not be managing that well.

This has nothing to do with his families financial situation or being in a family with neglect, abuse, poverty, mental health etc. So no telling him kids go through that won't do anything, he already has challenges, (yes he could have others, but again it's not a race to the bottom, we don't have to only care when a kid has SEN and is neglected and lives in poverty), the comparison isn't helpful. He can't help it (that's why he needs extra support to learn emotional regulation) and that takes more time in kids with his issues and also needs specialist support, different types of therapy @FatAmy123, maybe consider play therapy? He also need support in school, as OP said he's not at his actual age, and even if he was, all 7 year old haven't learnt complete emotional regulation yet. It's not just that, he clearly isn't safe on his own, trying to leave the house or screaming and breaking things. Yet the council have let her down, when normal these kids can get support like TAs with more training in school, DBT or play therapy, sometimes respite care so parents can have a break, they often need more accommodations in school, perhaps a special school for secondary @FatAmy123 because they'll likely have the facilities for him.

Boundaries and consequences will help but don't work the same for kids with SEN. He doesn't have the best understanding of those concepts yet. Tell me you don't understand SEN conditions without telling me. Many professionals are often needed to support these kids, it takes longer for them as well to do so, expectations need to change as a result to be fair for them, yes they need to understand behavioural rules but that's the longer term goal and we need to adjust expectations in the short-term to get them there.

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