Saturday, September 18, 2010

Here we go. . .

Sam's sleep issues persist and I am very tired. I suspect Sam is tired too but it manifests differently in him. His pattern is to insist I stay while he falls asleep. This actually doesn't take too long so if that were the only issue I could live with it. He sleeps until somewhere between 12 and 2. I suspect his little brain has gone through 1 long sleep cycle at that pointatsge 1,2,3 4,REM,4,3,2 and as he re-enters stage 1, a point when you or I would turn over, resettle or adjust our pillows, he snaps awake, looks for me and runs out of his room in a panic. I take him to the bathroom, escort him back and help him fall asleep again. It doesn't take too long. I go back to bed but before I can get into a real sleep cycle myself he is up again. This repeats about every hour until 4:30 or 5 and then he is done for the night

I have been on the phone with the neurologist every few days and she has been gracious enough to return all my calls even though there is nothing she can bill for. We discussed various options. The first was to assume this is behavioral and see if going back to a school routine "re-sets" his clock - it didn't. Also, I could let him "cry it out"- I feared this option. The second was to increase his medicine in the evening to increase sleepiness (and/or increase melatonin). The third was to give him a heavy sedative for a few nights to "break" his habit of running out of his room looking for me (she mentioned this option but said she was reluctant to try it unless we were out of other choices). The final option was to try Clonidine.

We both felt that we wanted to avoid adding another medication unless nothing else works. We adjusted when and how much he gets of his current medication and increased his melatonin. The benefit of this was that Sam began falling back to sleep more easily during the night. It did not prevent the wake-ups. So while he got a bit more sleep, I didn't. After yet another week of this I got a call from Sam's school - they were concerned about how tired he seemed (they also don't like the lunches I have been sending but that is another story). I was a little surprised since I informed them of the sleep issues a while ago. Surprise, he is tired. I even put in a request for the behaviorist to advise us (a request which I have not heard back about - but that is a whole other post). I also felt terrible at the end of this week. I have a full teaching schedule, Sam's afternoon therapy hours and a house to maintain. Did I mention I am pregnant? - yeah, almost 15 weeks but friends, please maintain Facebook silence on this one until I tell work.

I spoke to my husband this afternoon about the next step. I felt strongly that it would be a bad idea to add more medicine before trying a behavioral approach. Now that Sam has a boost with his current med and his supplement, he SHOULD be able to stay in his bed all night. The fatc that he is able to fall back asleep when I am in there tells me he SHOULD be able to make it through the night. The running out and looking for me seems behavioral to me. I told him I wanted to try to extinguish the behavior starting tonight. The hard part about this is that I cannot lock him in his room (no lock), he can climb any baby gate ( he is VERY tall), and his sister sleeps in the room next door. I didn't exactly have everything figured out but I started our bedtime routine determined to succeed.

I put Sam to bed with his usual song and then I walked out closing the gate behind me. As expected he began to freak out. It is terrible when your non-verbal son manages to scream out "mama mama mama" and you can't go. He cried and stomped and kicked and cried some more. He threw all his pillows out and climbed the gate. I put him back in. Repeat. I added a second, pressure mounted gate on top of the first but he punched it down. I held the doorknob. He pulled and cried. Then he decided to be naughty to see if I would come in. He started flicking his light switch and throwing toys. He tried the door a few more times, still screaming. I heard him climb into his bed and bury his face in his pillows. He continued crying but it got less intense. He ran tot he door again, pulled and screamed. He got back into bed and cried more quietly. The he fell asleep. The whole ordeal took 20 mintues. It was only 20 minutes. I don't want to minimize how emotionally painfull those minutes were for him (or me), but now he is asleep in his own bed and he fell asleep without me.

I don't like that I had to shut him in his room. That is not the kind of parenting I wanted to do. I just don't see any other choice. He doesn't have the comprehension to reason or bargain with. And when it became a choice between shutting him in and adding more medicine, I felt better about shutting him in.

I suspect he will wake at least once in the night and we will repeat this process but at least my resolve will not be new to him. WHen he wakes I plan to take him to the bathroom, put him back to bed and walk out. If I have to hold the door again I will. In the past, with issues like this, Sam has taken about 3 days to adjust. I am hoping this holds true. If, after a week of this, Sam still can't make it through the night, we will consider more drastic measures. I am looking forward to a few 8 hour nights later this week. I can't even imagine.


Commander In Geek said...

I wish I could say that I know how you feel. Parenting in general is hard, and you are getting more than a few people's fair share. We hope this resolves soon so that you can both get some rest. If you ever need to talk, feel free to give us a call.

Stranded said...

You done well Emma. Thats all I can say. JUST STAY STRONG. This is your burden and responsibility as a parent sometimes - to see and feel the pain but you still have to do whats right.

It may be small consolation, but in the grand scheme of things, doing a behavioral trial of a week or 10 days - is just a very very tiny fraction of time in Sam's long life with you. Its insignificant. But if it works, then you're in for some peace at last.

If it will make you feel better, we went through the same things with Khaled, but he was a lot younger (3 years old) and therefore not as strong to punch down gates etc. But he would thrust his body against the door repeatedly.

once this boundary was established and limits had been set. I could go in and "normalize" bed time a little, but introducing gentle routines like songs and such or just caressing his back to help him to sleep.

He sleeps through the night most nights of the month, without any medication now.

It was very hard emotionally. I wasn't pregnant though, or working nor did I have another child. I can only imagine your exhaustion.