I need advice on sleeping arrangements

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This is probably going to sound weird, but here goes nothing: I need advice on whether I should trust my 10 year old son with low functioning autism, mental retardation, sensory integration difficulties, OCD, aggression and a history of elopement to sleep alone in his room. For the past two years I've slept in the spare bed and locked us in with a key hidden inside the room but lately he's been getting up at least once a night. I'm wondering if my presence in the room - I snore - might be the problem?

Two years ago he had some pretty bad episodes with destruction and self injurious behavior. He essentially gutted his bedroom using his feet and head. It got so bad we had him admitted briefly but after he came home he seemed even more motivated to elope and was successful on a couple of occasions while the rest of us were asleep.

Since then, I've done my best to make his room a safe haven from his aggression. I put paneling on the walls to cover up the fissures in the drywall, put lexan on the lower panes, room darkening curtains on the windows. I've also put alarms on the doors and double barrel deadbolts on each exit.

As it stands now he's mostly safe in his room but after two years I'm missing curling up with my wife in my own soft bed. Is there anything else I need to do to make that a reality?

I have zero experience with your specific issue, but I will say that all children mature and change, and it is possible he is ready for the change. If you do decide to make a change, approach it gradually, baby baby steps that all him to adapt. Engage him in the process to the extent it is possible. Since you aren't going to be able to sleep with him his entire life, if you think there is a window for change, use it (my basic general advice for all things ASD).

Also look for other reasons and changes for why he may now need to get up in the middle of the night. Or maybe there are none, and it is just a phase: both of my kids (one ASD, one NT) circle in and out of that.

You can also keep a monitor in his room to allow you to check on him when you aren't there (if you don't have one already).

Sorry I don't have any actual experience to give you on this.

This is really a difficult situation, as elopement is not something to play around with. Alarms on the doors was definitely a good call. Locking a child in a room unattended is not a solution. It can be very dangerous and I believe can be classified as child abuse (I'm assuming you know this, which is why you lock yourself in too). I've also seen people put combination locks on the front / back house doors (which may result in fire-safety problems). I don't know how determined your child is to elope, so those may not work.

It's helpful for this sort of thing to try to figure out the function of the elopement - is he looking for exercise? stimulation from exploring? If you can figure this out, you may be able to satisfy the need during the day so it doesn't get so bad. He may be in pain, and unable to express it. GERD is very common, and tends to be worse in the night. It feels better when one stands up as well, which would possibly explain him getting up. It may be worth getting him to see a doctor who specializes with this population and will be especially thorough. Given that he doesn't talk. This checklist may help you see if there is an issue with pain or chronic illness: http://www.aboutkidshealth.ca/En/Docume ... eryday.pdf

Since you already have alarms on the bedroom door, you may want to try sleeping in the living room for the first few nights (depending how your house is structured) so you can catch him before he goes out the front door. Maybe try to watch him without interfering. Maybe he just wants a snack. You could then make sure to put some water and a banana (a good night time snack, since it fills you up and makes you sleepy) in his room in the future. Maybe he's trying to get at all his favorite treats or toys, now that they're unsecured. You could solve that by just securing the treats and toys in a locked door (rather than him).

Sorry I can't give you any better solutions. I hate to see this sort of situation, and it may be a sign that a specialized residential setting may be required - that is, if he is currently unsafe, or if his behaviors are deteriorating. I know that's a scary thought, and as a good parent you don't want that for your son. I'm just pointing it out because, at some point, t may be the only way to protect his safety. It may be helpful to think now, what that cutoff would be. That way, if you need to make a decision like that, it can be more rule based (we reached the cutoff) and less emotion based.

justinsdad,
can relate to justin, am severely classic autistic,have moderate intelectual disability,and do the same behaviors including running off-was even admitted into a intelectual disability hospital on a section three last year for four months for the same reason as him.
however have lived in institutional care for the past decade and have a 'waking night' staff sat outside bedroom door with it open to monitor self,plus have a 'sleep in' staff in the staff office.
does health insurance not cover the possibility of a waking night staff for him?

one thing woud recommend as someone else has done [we dont have it here because of it being fully staffed] woud be bedroom alarms on the door so that when theyre opened they can activate an alarm.
here is a great example of this-
http://www.alert-it.co.uk/Products/SecureIt

You get the Dad of the Year award as far as I'm concerned. Wow.

Thanks, everyone. Let me address several things.

I: why I think he's getting up.

1. he's on clonodine as a sleep aid and it makes him urinate more and causes thirst. While he may indeed be thirsty or soiled once he's allowed to leave the room he avoids the bathroom and seeks out mommy (see #2)

2. he's looking for mommy because she puts him to bed, he takes better comfort from her, leaves for work before he gets up for the day and works long hours so that she comes home just a couple of hours before bedtime so I think he misses her.

3: he loves to stare at the streetlights, the neighbor's porch lights and the moon when it's near full. Sometimes he'll just fall back to sleep but many times he's gather stimulation from that and move on to sensory seeking behaviors regardless of the time of day as he appears to have little concept of time beyond "first, then."

4: he's particularly obsessed with getting in our neighbors houses ever since we first took him trick or treating on Halloween years ago. Our next door neighbor also used to give him those expensive chocolate truffles.

5: he has occasional bouts of encopresis and his bowels will only move when he's completely relaxed or the discomfort wakes him

6: he's bored and looking to start up some excitement and the best way to do that is to make others shout.

BTW, there's no alarm on his bedroom door, but I have one ready to go. I just didn't want to have it wake up the rest of our family. My younger son has been having behavior problems of his own and my wife is our sole breadwinner and getting to be rather important in her company so she requires her rest to function, not to mention that she has her own chronic health issues to deal with.

As I said, we put him in inpatient once and the experience was not one I'd care to repeat because the facility was NOT adequately staffed and overcrowded. We have a variety of support services in place such as a school that is also partial hospitalization as well as wraparound, but we've had lots of turnover in therapists and counselors and it's hard to even maintain the status quo. We have also gotten approval for and registered with more services such as respite, a home health aide and family based intervention but the process to get these services in place has been excruciatingly long and delayed mostly by a shortage of resources and staffing. I've even reached out to charities to get assistance with regards to safety equipment in our home and a fence for our back yard but I'm finding it hard to be diligent on those since I'm stretched so thin and dealing with a lot of stress.

Residential care was mentioned, and that's something that I'm willing to explore in the long term because he just turned 10 but financially the prospect of that does not instill confidence in me - especially since our family operates on a single income. My wife laments about the cost of things that we've tried but by and large we've been fortunate to have funding to cover the vast majority of the services we have received and the additional ones we qualify for. As mentioned, we were even awarded partial funding for a fence. We also have a service coordinator to work with this on this very matter and the picture she paints with regards to availability of funds is not an optimistic one. Basically, he wouldn't be considered for aid unless he were an adult and there would have to be a real threat of him becoming homeless.

There are also bigger issues with the family as a whole that are in play but I don't want to get into that here other than to say that I feel myself being pulled in three directions on those matters as well.

Giant (((((((((((((((((((((((hugs)))))))))))))))))))) on that (or something else, whatever cyber comfort you like, if you don't like hugs)

Remember to give some time to yourself, too, because if you aren't fully charged it gets very difficult to meet everyone else's needs. I know that is not at all easy to do, and most of us skip it for long long periods of time, but ... you know you have to.

Thanks, everybody - especially to you, KingdomofRats. It made me realize that even though my son is nonverbal and prone to behaviors that are both impulsive and dangerous there's also a mind in there. It's all too easy for a caregiver to fall into despair when their loved ones does things to harm themselves - especially out of frustration over being misunderstood - but my own personal comfort should not be the primary goal here. I need to have more faith in him, even though I know there WILL be episodes in the future. Part of being human is that we're all prone to making mistakes.

Anyway, Emile and DW you bring up valid points. Last night I made the effort to minimize any overt activity after 11PM (namely I turned off the TV and all the lights, though I did continue to use the laptop in the dark with headphones on) and slept on the couch downstairs afterward. That was partly because I have a head cold and I know that my snoring would wake him up. Though I don't know if this was going to be a regular thing, to his credit Justin did not wake up and wander. To be truthful, I did not sleep well at all but it was nice to be able to go to the bathroom in the middle of the night without having to sneak out of a locked room. I also woke to find that my younger 7yo son had come downstairs and was sleeping beside me but I put him back to bed without much of a fuss. It wasn't until after my wife got up and left for work at 5:30 that he got up, but even then there wasn't much cause for concern. I was already up and I made a point to be as passive as I could be. Though he did go downstairs, he didn't turn on any lights or look for something to get into and eventually he just went back up to his room and stayed there for another hour. I failed to realize that he'd soiled his pullup however, but even still It did not become a mess elsewhere. Still, I'm going to give it another try tonight and see if this behavior is the norm for him.

I would try to find an alarm that would sound only near you. Maybe you could get one modified for you.

I was thinking that very same thing. I don't want the whole house awakened unless he goes outside which I've already taken measures against. I'm also just as likely to sleep through it anyway. Instead, I was wondering if I could get something I could plug headphones in or pair with my smart phone so that it vibrates and I can set a custom alert tone to?

I guess I can Google it.

I'm not sure if this would help, but our front door has a secure lock on it. There is deadbolt but it is not the kind you turn with a paddle on the inside. It locks from the inside with the same key as the outside. There is no opening the door without the key. I'm sure these locks can be purchased at hardware stores and it would keep him from exiting the house.

Yes, I have one installed on the front door and another on the rear sO that exiting the house isn't as much of a concern (though conceivably it could still happen) inasmuch as he could wander downstairs and cause a real mess. He's shown the desire to slide chairs to places out of his reach and try to pick locks. We have to be on constant guard. The idea of getting a professional alarm system has also crossed my mind a couple of times. I've also looked up some of those mattress pad monitors from Honeywell on Amazon. Are they any good?