sleeping disaster - long

greyt00 · June 2014

DS1 has become a disaster at night. He was gotten up in the middle of the night (usually 3-4 AM) 12 of the last 23 nights. Saturday night was especially bad. When he gets up he does any of the following: 1) Comes out of his room and yells very loudly “tissue” or “I need help.” (most common) 2) Stays in bed but yells very loudly “tissue” or “I need help.” (less common) 3) Comes all the way downstairs into our room quietly (rare).

Sometimes his screaming is incoherent. I've heard him yell Mommy as well, probably Daddy, too. Many times, we give him a tissue per request and he goes back to bed on his own, quietly, and that’s it for the night. Sunday AM was horrible. He wouldn’t go back down. He kept screaming “I need help” and “help with Elmo.” He has a stuffed Elmo and a small Elmo blanket in his bed. He also insists on keeping his bedtime books in his bed (and there are 4-5 of those…) I have no idea what he wanted me to do with Elmo – nothing, I think. Maybe he latched on to this “help” thing as a stall tactic or a generic complaint. The tissue thing emerged last December when he got a bad upper respiratory infection. He was snotty and asked for a tissue and sleeping at that time was a nightmare. We ended up sleeping on the floor in his room a few nights during that illness. Ever since then, he asked for tissue often (even when not obviously upset) and it seems like a security blanket now. It got out of control so we made a rule that if he wants a tissue he has to stay in his room. That has worked at home pretty well to make him stop asking. If he seems snotty or has been crying, we help him wipe with a tissue and then dispose.

Sunday AM after he got up screaming, and he wouldn't stay in bed, I locked him in his room for 1-2 minute intervals while he screamed and pounded on the door. On the first round I gave him a tissue because usually he wants one. I can’t remember if he screamed for it or not. When I went back in, he had torn it up into several pieces. I said “go to bed”, put him back in bed (standing up even), and left again. I did this several times but did not give a tissue. Finally, he sat in bed while screaming. I left him for several minutes and then went in, moved Elmo and blanket from the foot of the bed to his end, begrudgingly gave him another tissue (I think he asked for one), and that was it. He was quiet all night and slept later than usual. This morning he got up at 4:30 and went back down with no issue. What is this and what should I do? I plan to email the BCBA about it. He does the “I need help” thing a lot even during the day. If he drops something on the floor, he’ll ask for help instead of just picking it up. One morning he wanted to lay on the couch and be covered up with blankets. He asked for help to be covered. Then he got up (blankets fell on the floor or maybe he threw them) and asked for help again. We went through several rounds of this.

I see the other thread about night time problems (“s/o meltdowns”). Connor has sensory issues but I have no idea what is causing him to freak out. We are headed into a week-long stretch when DH will be out of town, too. Ugh. Both boys want Daddy at bedtime right now, not me. I never really tried to comfort him. I guess that sounds stupid but he threw me with the "help with Elmo" thing and I was confused and he has been doing this wake-up thing for awhile now, so I'm pretty sick of it. Maybe next time if he's really upset I can try sitting on his bed for a few minutes. But I know what will happen, he will just freak out again when I try to leave.

hopecounts · June 2014

standard advice

1) ask Pedi about melatonin

2) weighted blanket

3) talk to BCBA about addressing the tissue request if it's becoming a problem they can help you target the behavior for extinction.

Hang in there, hopefully this is just a unfun phase and it'll settle back down soon.

greyt00 · June 2014

We just started melatonin last night. I need to call and ask them about the dose, though. We didn't give him much. And the only way we can give it to him is grind it up and mix it one particular food -- which he may or may not eat shortly before bed. But we are trying.

I'm surprised our OT has not mentioned weighted blanket, or maybe she did a long time ago when I was too overwhelmed in general and I brushed it off. I've gone through various phases of being able to handle -- or not -- some suggestions. I'll ask her. It seems like he would like it. We recently discovered he likes being "squished." How much are these blankets? Everything "special" is expensive, several hundred I'm guessing.

Yes, I'm going to email the BCBA about this episode the recent trend. They know about the tissue thing in general and his "I need help" request when it doesn't seem like he does. We talked about it on Friday. They are going to work on problem-solving and communication.

I'm afraid it's not a phase. We've been having issues since December and I've been tracking it since March. April was good -- only 5 disturbances. March was bad but not this bad.

hopecounts · June 2014

Weighted blankets are pricey but if you can sew a straight line (or have a friend/family member who can and is willing to do so) you can make them for way cheaper.

It's a little complicated figuring out how to divide up the pellets but there are a ton of youtube videos/online instructions. We made one for DD after talking to her OT to help her settle down to sleep easier (she's a good sleeper once she gets to sleep but had trouble settling down at one point) and it has helped a lot.

greyt00 · June 2014

Thanks. No access/ability to sew here. Our OT is going to loan us one. I need instructions from her, though. Am I supposed to lay it on him all night, or is that too much sensory input and I need to "phase it in"? (slowly increase the time it's on him) Of course, he moves a lot while sleeping so it may not stay on him anyway. We both work so we won't be able to do much with it during awake time during the week. We spend our sparse evening time Mon-Fri prepping/eating dinner ourselves and trying to get food in HIM.

SantoriniSteph · June 2014

Just here to say I feel your pain. DS is 3 1/2 and wakes up screaming every night. He is non-verbal so instead of having a guess at what he wants, he just screams. Tried melatonin and it kept him wide awake ALL NIGHT LONG for 2 weeks. He hates blankets so weighted ones wouldn't help. Sorry you are going through this too.

greyt00 · June 2014

Steph, I'm so sorry.

hopecounts · June 2014

greyt00 said:

Thanks. No access/ability to sew here. Our OT is going to loan us one. I need instructions from her, though. Am I supposed to lay it on him all night, or is that too much sensory input and I need to "phase it in"? (slowly increase the time it's on him) Of course, he moves a lot while sleeping so it may not stay on him anyway. We both work so we won't be able to do much with it during awake time during the week. We spend our sparse evening time Mon-Fri prepping/eating dinner ourselves and trying to get food in HIM.

Yes speak with your OT about how to introduce it.
For DD we just started using it because she is sensory seeking when it comes to full body pressure so it was comforting and relaxing for her, depending on how your kiddo responds to that type of sensory input you may need/want to phase it in.
DD is a fairly still sleeper but the blanket has enough weight that it stays on pretty well unless she actively removes it which she has done at times if she gets too warm or presumably it's bothering her.
I usually leave it alone if she does that (unless I'm worried she's going to get chilled) but we mainly need it for getting to sleep not staying asleep so I'm ok with leaving it off.

greyt00 · June 2014

Well, his OT knows how sensitive DS1 is and she said he would sleep under it, with no qualifiers.... Once we get the blanket from her she might revise that and tell me to take it off him later at night, increase the time gradually, I don't know. DS1 is mostly sensory AVOIDING but he loves crashing into things, being smooshed, etc. So it's a mix. I don't understand.

So are these blankets really just about $100? I found a couple stores online. I expected worse, because everything costs a fortune. I guess to some people it might be a lot.

I just don't know why he wakes up, what we can do to help. We are between doctors because, well, we hate his diagnosing dr. I need to make a get-to-know-you appt. with a new one sometime, but things just keep going wrong and it's been hard to focus on choosing someone and set it up. I don't even know what I would tell a new dr. the reason for our visit is. Nothing in particular, just need someone.

hopecounts · June 2014

greyt00 said:

Well, his OT knows how sensitive DS1 is and she said he would sleep under it, with no qualifiers.... Once we get the blanket from her she might revise that and tell me to take it off him later at night, increase the time gradually, I don't know. DS1 is mostly sensory AVOIDING but he loves crashing into things, being smooshed, etc. So it's a mix. I don't understand.

So are these blankets really just about $100? I found a couple stores online. I expected worse, because everything costs a fortune. I guess to some people it might be a lot.

I just don't know why he wakes up, what we can do to help. We are between doctors because, well, we hate his diagnosing dr. I need to make a get-to-know-you appt. with a new one sometime, but things just keep going wrong and it's been hard to focus on choosing someone and set it up. I don't even know what I would tell a new dr. the reason for our visit is. Nothing in particular, just need someone.

$100 is about right which really isn't that bad comparatively.
IME it's not as clear cut as sensory seeking/avoiding.

DD is sensory seeking for certain things and avoiding for others. DD loves full body pressure, hugs (hug please is a frequent request), tactile input, noise (sudden noises freak her out but it's the surprise she can't manage not the actual noise) but other types of sensory input put her into stim mode, it's very dependent on the form of stimuli. And there are some ambivalent things that on a 'normal' day don't bother her but if it's a rough day (out of sorts due to being kept out too late for example) they can set her off.

for us it has been very much trial and error, talking to her OT/ABA about their observations, and guesswork.
the blanket should help him stay asleep which should help reduce/eliminate the issue.

greyt00 · June 2014

Man, I sure hope the blanket helps. Up 17 nights since May 1. If it's about $100 plus some shipping, I'm thrilled. I'm sure my OT can suggest some places to get one, if we like the loaner.

DS1 avoids with oral sensory and tactile (touching things). He hates mess. But he loves being squished, crashing on soft surface, covered with blanket, pillows, etc. Maybe you could say he is also seeking with visual because he likes lights and colors. I never thought of that as a sensory seeking thing but maybe it is. I haven't noticed anything with hearing other than he occasionally puts his hands over his ears when I don't hear anything that I think is loud or strange or unexpected. That's a newer one in the last 6 months perhaps.

SueBear · June 2014

Another suggestion if he doesn't have issues with smells - - my kids slept better when I sprayed lavender on their pillows. It is calming to them. You can buy a sachet, a spray, or get a dispenser (which can be pricey). Also if they take a bath with lavender body wash (most popular kids brands like J&J and Aveeno have lavender).

greyt00 · June 2014

Hmm, thank you for the tip. I will look around!

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