Handhold required- horrible day

[FatAmy123]

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.

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

Oh love that sounds really hard. The thing is you don't know the current locks you have are no longer sufficient until you don't know by incidents like this happening. You've got the door alarms etc ordered and you did wake up and you did find him, safe and unharmed.
As for your eldest I've little experience with this but you have put support in place, encourage DC to educate those around him on what to do if x y or z happens.
You've had a really scary day and I'm sure it's been one of many over the years and I doubt it will be the last unfortunately. Take turns with DH to go lock yourself in the bathroom/head out for a bit of alone time and feel all the feelings, break down, cry, scream, spiral, whatever you need to do for a set amount of time. Once your time is up then you focus on both DC are safe, the worst didn't happen, you've put steps in place to help avoid a similar situation, is there other steps you can take?
Big hugs OP it's bloody fucking hard but things will get easier, younger DC will at some point listen and understand the dangers better, older DC will have a whole new circle around him supporting him as he takes those first steps into adult life x

I am so sorry @FatAmy123 It’s horrible and no wonder you feel overwhelmed 💐

Hi, sorry to hear you’re having such a stressful time. Re your youngest, you can ask through your local council for an assessment to access a Disabled Facilities Grant - they will do an OT assessment and look at making your home safe for your son. I work in a school and parents have been able to access this relatively quickly and easily.

Thank you for this- I really appreciate it. I feel the opposite, I feel like I should have known.

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.

Ok this reply isn't as nicely written as the previous one....Stop it. Stop blaming yourself. You were asleep, you are allowed to sleep. You did everything you knew to do to keep DS2 secure and safe and now you know it no longer works you've taken steps to resecure with different locks/alarms so STOP. My DS is also extremely clever, single minded and will work to achieve his goal ie how to open a lock or reach a key and he too has zero danger awareness. You didn't fuck off out to take drugs or get drunk down the pub leaving him unsupervised and the door lying wide open. When I said feel all the feelings I did not mean guilt, or at least fine sure, blame yourself whilst you are spiralling but then pack it in. OK? Lecture over 😘

Bless you - my godson is autistic and is an escape artist too. He has got out a couple of times - he normally heads for the local shop! I know his parents have put alarms on the doors so I hope you find them useful. Please don't beat yourself up about it - he's home now and you're working on a solution - he's lucky to have you.
I really hope your eldest has a wonderful time at uni x

I’ve had similar challenges with my kids. Look into smarthome solutions for both of them. Things I have found that help are sensors which alert my phone / Alexa (I use tapo but there are lots other systems and the cost has really come down).
You can get mat sensors you will hear when son leaves his room. The social worker should have referred you to the council OT for funding for safety stuff.
You can also use smart light bulbs and connect them to some apps to make lights flash if a sensor is triggered
You can also use smart systems with some diabetes apps if your son wears a cgm. I found my son a bed shaker alarm that connects to the diabetes app. You can also get really loud alarms that connect to sensor and would wake his housemates.
Can you follow his blood sugars on your phone? If he’s not on the latest pump / sensor then look into the hospital near uni and see if they offer more modern stuff as you can move his care. My son has a pump that automatically stops basal when he goes low and he has far fewer hypos and less severe ones since he’s been on this. It’s been a real game changer.
It has got easier as they’ve got older.
And it doesn’t help it’s the end of what has probably been a long summer holiday. I know I’m exhausted after 6 weeks with no school respite.

I 100% get this. Its shit. But you are doing your best, you are doing everything you can.

Some ideas to keep your 7yr old safe:

• Dog stair gates, often taller and sturdy. Ive seen some people put 2 on. One on top of the other.
• door alarms
• a string of bells across the top of doors
• door handle jammer
• a texture or something they dont like, by the exits, might work better if they're barefoot
• if their special interest is cars, then pre set the tv to a car programme, might be a good idea to do this in their bedroom. Or set out cars whilst they're asleep so their attention is taken to their special interest.

Be sure to have alternative safety routes out for fires etc.

Its bloody hard always being hypervigulent (sp)

You're doing a fantastic job

I 100% get this. Its shit. But you are doing your best, you are doing everything you can.

Some ideas to keep your 7yr old safe:

• Dog stair gates, often taller and sturdy. Ive seen some people put 2 on. One on top of the other.
• door alarms
• a string of bells across the top of doors
• door handle jammer
• a texture or something they dont like, by the exits, might work better if they're barefoot
• if their special interest is cars, then pre set the tv to a car programme, might be a good idea to do this in their bedroom. Or set out cars whilst they're asleep so their attention is taken to their special interest.

Be sure to have alternative safety routes out for fires etc.

Its bloody hard always being hypervigulent (sp)

You're doing a fantastic job

Sending massive hugs and strength.

Our DS is 6 and similarly no danger sense. It is not your fault at all!!! We’ve had lots in place and we know it doesn’t work when he manages a way around it….

You’re doing amazing next level parenting so be kind to yourself and give yourself a massive hug.

If you would like a chat please do drop me a message, I know it can feel really isolating sometimes when not many parents around you are going through the same experience.

You need a home OT assessment to look at making the house safer and better meet DS’s needs. As part of this you could look at a specialist bed so you aren’t worrying about DS escaping or doing something he shouldn’t overnight. I also second looking at a Disabled Facilities Grant.

The council should not be refusing social care assessments because of DH’s income. A carer’s assessment for you and an assessment of DS’s needs by the children with disabilities team. On their website, Contact has model letters you can use. Depending on DS’s needs, continuing care funding is sometimes possible for ASD. Not easy and takes time though.

My 15 year old went through this he's also severely autistic, ask for an OT assessment, they might be able to suggest something
Funnily enough my nearly 19 is also Diabetic!
And was diagnosed two years ago in DKA so I have every sympathy with you and can understand your concerns.

Respite shouldn't go off earning ,it should go off need i do get a package of respite now but our finances were never discussed.

Oh what a tough start to the day for you. You’ve done all the right things (buying more locks etc.) but the shock will be with you for a while. I hope both of your sons are doing better now and that you’re cutting yourself some slack. It sounds like you’re doing a brilliant job.

Oooft.

That’s a tough day!

Those door alarms are great. Warning - you jump out of your skin each time they open til you get used to it. But really effective.

(and if the one you’ve ordered isn’t loud enough, I can tell you one that is!). We set ours to alarm continually at night, and ‘just’ ‘chime’ during the day.

sorry if I’m being dense, but could you not have a lock fitted that can only be opened with a key, and then keep the key in your bedroom? My front door can’t be opened without a key, same with the back door and all the windows. So as long as the keys were with me and the doors were locked, no one could get out.

Does your older son have CGM with an app? My friend’s son has T1DM and when he’s away she can see what his blood sugar is all the time. An alarm goes off on her phone as well as his if he goes hypo.

Yes the door does have keys, what we were doing is putting the keys up high. I didn’t even realised he’d cottoned on to where we were keeping them, but he had and he’d got a dinning chair and stood on it to get the keys. I should take them with me, that’s what I’ll be doing tonight. I just worry my eldest will forget to hide his key when he’s been to the pub so the alarm seems the best option just in case.

All the room sensors and alarms sound excellent so I’ll look into those. I’m also going to track his iPad as he tends to carry it around like a security blanket even when he’s not using it.

DS1 does have a CGM, a dexcom. He hadn’t changed the sensor this morning.🙄 I’m going to tell him to remind disabled services tomorrow to set up his housemates with the app so they can be alerted if he hypos.

Oh love. Hand hold, hug, head soothe etc from me. You've had an awful day. You're doing everything you can to keep your children safe and your mama instincts DID kick in when you woke suddenly. You've taken steps to improve security in the house, so you ARE keeping them safe.

It's been horrible today but tomorrow will be better. Lots of love .

I’m going to tell him to remind disabled services tomorrow to set up his housemates with the app so they can be alerted if he hypos.

does he already know his housemates? That’s a big ask of people whom he’s never met before.

He knows one already yes. Apparently there’s a 24 hour first aid contact so it’ll just be a case of a housemate alerting them. Apparently there already mentioned an alarm system type thing so he’ll find out what they offer tomorrow

@FatAmy123 I feel your pain. My son is similar (ASC) and he is almost six. I'm beyond knackered. I cried in the woods today just because it is so hard. Some kids were inviting DS to play but he didn't understand and started stimming (he's non verbal). They then called him a zombie and they all had to run away from the zombie and fight him if he got near. Still feel upset now even though I know they are just little kids themselves.

For your doors check with the council. My local one are fitting biometric locks to doors to help stop children escaping. You need an OT assessment if you haven't had one. I'm still waiting for mine. Thankfully my son hasn't worked out the keys to get out yet. He knows what they do but he doesn't have the capacity to know which one or the dexterity to use them thankfully!

Kids csn be horrible sometimes, my son is non verbal and oblivious to what other children think of him but it hurts me when children say cruel things.

@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.