Our lives are a misery

[GodKeepsGiving]

Someone please give us some advice. DS2 has been referred to our paediatrician because of suspected autism. Our lives are hell at the moment. He wakes every morning at 4 am and jumps loudly on the floorboards and shouts. He switches the lights on and off repeatedly - the fuses have blown and we have had to use lamps on occasion which he touches repeatedly. He seems to have no inner control over his behaviour and seems to enjoy antagonising his siblings. I am at the end of my tether. I have suggested this morning to my husband that we put him back in a cot bed and use some sort of harness to prevent him from getting out because he climbs and is very unpredictable. I just want to make things better for us all and now DH is suggesting I'm being cruel. I don't think I am, but I feel very alone. I would be really grateful for any advice or support.
Thank you

He's 5 btw.

Thanks justaboutstillhere. I don't want to hurt him in anyway, he's a lovely boy. I will try SN Fledglings if I can persuade DH. I will find the money somehow.

No real advice, but lots of sympathy when do you expect he'll be seen by the pead?

Regarding his room could you maybe put a VERY big gate on his door and remove anything he can climb? basically making the room safe? this is what we have done for my DS but he's only 2. I see TOTALLY understand why you would want to use a harness, its a thought that has passed my mind both for my DD1(9) and DS, i dont actually think its cruel if it keeps him safe, but if you can go with making his room safe first and see how that goes.

Re the light bulbs is it the switches that he likes or the light going on and off? if its the latter then take the bulb out of his room. If its the switch then get him a switch (or several) for him to have as his own.

Hope this helps, im sure someone much more informed than me will be along shortly .

Can I apply to Safespace without him having been seen by a paediatrician? The waiting list is about 6 months here and he was referred about 6 weeks ago.

Thanks 3cutedarlings, it's the light he likes. The problem is that he share with his brother (also ASD) who is terrified of the dark. I suppose we will have to try making his room as safe as possible first, but it all gets me so stressed I could weep.

consider asking for some melatonin to help him sleep through. Lots of aSD children use it and it will give you a break from the 4am stunts. I could have written your post five years ago as I was also at the end of my tether. It does get better. Melatonin gave us our first night off when ds started on it around 5.

Thanks very much justabotstillhere, I will ring them this morning.

DS has a big cot bed. He has physical disabilities and in his case it was to prevent rolling out. (the mattress area also rises for ease of getting him in and out which you probably don't need); iirc it was in the region of £1500 8 or 9 years ago. We went through NHS Occupational Therapy - they advised on design, suitability etc and approached a local charity to fund it.

On the side he gets in it has two big gates with bolts on - which a determined child could probably undo; I know a child who has one with drop sides like cots, to consider is that the Mum says she finds it difficult to open as it is heavy.

We have a tall safety gate with an alarm on DS2's bedroom door, and we have basically child-proofed it as much as possible. We absolutely could not sleep worrying when he managed to figure out how to open the regular safety gate on his door. He tried to get this new one open, but seems to have given up for the time being. Fingers crossed it stays that way for awhile.

Thanks everyone, we have a solution now. We are going to put him in a different part of the house with an alarm, safety gate and cotbed. Thankfully things look much brighter than they did this morning.

I would look into melatonin for the sleep and ABA for the behaviours.

Still be worth following up on a more permanent option. You can ask the disabled childrens team of social services to do an assessment of you as a carer and your child and see if any support eg direct payments available - a social worker can refer you to the OT at social services who deals with disabled facilities grants (which is what funds the safespace etc) even if you can't get to see the NHS OT. They can give you alarms etc etc as well.
You could also look at melatonin for sleep problems but would probably need to have seen a paed for that - but not necessarily for the full autism assessment, just to authorise the medication

How good is his understanding? Dd1 always used to wake at stupid o'clock because that when she woke. The problem is she assumed that meant it was time to get up, as she couldn't tell the time.
We got a light on a timer switch (we used rope lights for safety) and told her if light was on she had to stay in bed, if it went of she was allowed up. Explained she was allowed up if sick or needed a wee.
Worked well for dd1, however dd2 hasn got great understanding so hasn't worked for her yet but she's still young.

As for melatonin it might not work for you as its goo if your kid has trouble getting to sleep, but doesnt keep them asleep iyswim.
Interested to know where other part of hous is?

Another idea dont actually know why never thought of this for DS because we used it for DD1.

The baby monitors that have a mat that goes under the mattress to monitor babies breathing (cant recall the exact name), basically if they get out of bed an alarm will sound at your end of the monitor, so you know they have got up/climbed out of bed.

Thanks everyone. We have bought a baby monitor with CCTV. DS doesn't have much understanding and we can't get to see a paed for months and so we are going to contact the Disabled Children's Team/ Once he goes to sleep he's fine until he wakes at 4am. He's going in a different bedroom without a bulb - we are going to put one of those battery powered lights high up on a wall so that he's not in complete darkness.
I think one of those mattress alarms would be really useful, it would help to remind him that he isn't supposed to be climbing out of bed. Can I get ABA privately without waiting for a diagnosis? I know from previous experience that it will be at least a year to two years after the preliminary diagnosis that a formal one is given.

The problem with those mat alarms is they only really work when very small. We had them for the girls as babies and once they were able to roll, they were pretty useless
As for pead, it really depends on how clear the autism is ime. His four so dx shouldn't be delayed. Is he at a preschool/ nursery? If they are saying the same as you, it shouldnt be so hard.

Yes you can start ABA without a dx

Thanks lisad123. The usual time frame in my area is about 12-18 months before a formal diagnosis is given which is what allows you to access help from Children's Services. I know from the behaviour of my other children that he is almost certainly autistic, but he responds better at school because of the predictability of the school day, although he still has a lot of issues. Sorry if I got mixed up, he's 5, not 4.
I will look into ABA.

Of your in Bedfordshire or Hertfordshire there are 2 wonderful autism private schools from age 2-6 and they are wonderdul

Hi, Dawn's dd2 here. I'm always up early! When I was like this, Mum and Dad made my bedroom door into a stable door but with no top half, if you see what I mean. The bottom half was high enough so that they could look in and see I was okay, but it was locked so I couldn't get out and get stuff from the rest of the house. When my brother was obsessed with switches they got those stick up lights with batteries so he could switch on and off as much as he wanted and it was safer than the electric light. Oh, and they put a blank switch on his wall, shiny one and he was allowed to play with the shiny one but not the white one. Don't know if that helps.
About the melatonin. It helps me get off, but I'm still up early. I'm 15 now and I know not to go near the windows, but Mum still keeps them locked because sometimes I just want to go to them and it frightens me because I know I'll climb and can't stop myself. Usually Mum will get up with me to make me feel safe but sometimes I can stay in my room which is safe. The kitchen is banned!

Don't spend money on gates, alarms and motion detectors etc social services OT should provide this for free eg mats that set off alarm, door sensors with a beam that sets off alarm if the beam is broken. We looked at screening the room with a divider so one half the room has just the bed in it and no toys etc and the other half was everything else - you can get dividers (like stairgates) which fit across the whole room.
You could also try showing a picture of sleeping and awake so knows has to stay in bed. This didn't work for us as when DS is awake, he is awake.
But it has got better its normally nearer 6am now rather than 4am. We keep him up later too.
Also thick fleece pjs might help - all my kids sleep longer when wearing those.