Very despondant - teen DD with ASD, teen DS, acts like a teen DH

[JuJuBeans]

Hello, I'm not sure if this is the right place to start this thread. My DD aged 13 has ASD, with severe learning difficulties. She is mostly a happy young person, and enjoys her iPad, listening to music but she is very noisy in the house and has quite bad sleep problems. She often struggles to get off to sleep, meaning she is awake well after midnight, and if she does go off to sleep at a reasonable time, by which I mean before 11pm, then she will wake at 1, or 3 or 4 and not go back to sleep until everyone else is getting up for the day. She won't stay quietly in her room, and becomes increasingly upset, so she gets up, shouts, walks round the house and wakes us all up. I usually have to go back to bed with repeatedly until she finally drops off again. There is a sleep clinic at her school and we have tried all the suggestions for behavioural modification to no avail. The only thing left to try is medication.

My DS is 16 and doing his A-levels which is he finding very challenging. He has no patience with DD, and spends a lot of time shouting at her and telling her to shut up. This is unpleasant for all of us. But I can see things from his perspective, because it's difficult for him to concentrate on his work, or to even relax when DD is cavorting around the place, and "wooing" at the top of her voice. She also keeps him awake at night also which means he is tired and even more stressed out during the day.

My DH also has no patience with DD. To make matters worse, he has his own sleep problems, normally waking at around 2am every night and not being able to get back to sleep until 5 or so. So taken in combination with DD's problems it means that he gets very little quality sleep at all. He won't see a doctor to discuss his own problems and walks around most of the time complaining about how crap everything is.

I feel quite desperate a lot of the time. I am the primary care-giver, and also work part-time. I don't know how to resolve things - at this stage I have even thought that it would be easiest if we separated. DS could then alternate staying with DH on the weekends. Maybe we would all be happier. Anyone been there, how do you cope?

I have no advice for you I am afraid but I felt so for you when I read your post. I couldn't just read and run.

Can you repost this on the SN children's board, I know yours are teens but it gets loads more traffic over there and there are some really helpful people.

I have a daughter with ASD [hf] but have been really lucky so far with her sleeping, she can take up to 2 hours to settle but once she does she usually sleeps through till 6 or 7.

Hope someone over on the other board can help you .

Sorry, I don't really know, but could you perhaps soundproof your DS's room just to get him some decent peace and sleep? Not a proper solution at all but maybe a stopgap and less extreme than separating. Others on SN children have tried Melatonin with good effect, but again, not me personally.

I have sympathy having a son 16 with autism whose favoured bedtime is close to 4am.The years of no sleep mean that I have chronic insomnia myself probably like your dh has tbh.
My advice would be to speak to OT and SS and investigate getting soundproofing and a safespace for dd's room as well as insisting that medications are now investigated since the behavioural approach hasn't worked.
Do you get respite at all? Can you investigate some or more overnight respite for dd. Insist your dh visits the GP and invest in some ear plugs.Dh and I take turns to listen for ds and when it's not my turn the earplugs really help.See if ds can learn to tolerate them too.
Do post over on the other board though you won't be the only one with teens I'm there for a start

Thanks for the replies everyone. I will maybe repost on the other board - this one does seem a little quiet.

Got to say I LOVE your userid InsanityScratching!

I really helped just to write it all out. DD has recently started her periods so that may be making things worse. She is on the pill now because they were really heavy and with her inadequate diet I'm worried about her becoming anaemic. I go back to see the GP next month, and I think I'm going to have to ask about sleep medication. It wouldn't feel right locking her in her room. Soundproofing is something worth looking into - but for DS's room perhaps. At least that way he will get some rest. DH and I don't sleep in the same room due to his insomnia. I use earplugs but he won't - says they are uncomfortable. So at this stage if I can get the situation sorted for DS and get meds for DD to use perhaps a couple of times a week, then that will be a lot better than we are now.

We do get respite - but only twice a month. I think that realisitically we have no chance of getting more. We didn't even get the outreach that we applied for.