I'm really having a hard time & struggling with this. Please give me honest input without worrying about hurting my feelings. I'll try to make it as short as possible but I know you all would understand (hopefully) better than others.
My 26 month old son has never slept since he was a baby. It took hours sometimes of wearing him & rocking him while he's screaming to get him to go to sleep. As he got older he woke up sometimes 20-50+ times a night (not exaggerating here). I used to have a crib sidecarred next to my bed until my DD was born when he was 19 months old. I would nurse him back to sleep whenever he woke up. If I didn't he would just scream & cry. After my DD was born my hubby would wear him if he woke up & if I wasn't nursing my DD I would try to nurse him back to sleep in his own bed.
A short while ago I realized that he's autistic. I don't really have any doubts unless it's some other illness/disorder/medical problem that looks like autism. Well, autistic kids commonly have problems with sleep! They can't self soothe (I'm guessing?). They need medication or supplements or both. He has an appointment next week that is the start of his autism eval.
In the past month he has been on 2 no sleeping streaks. One lasted about 1.5 weeks. The other one was 3 days. He just seems to not physically be able to stay asleep. We give him melatonin to fall asleep but it won't keep him asleep. So during these non-sleeping streaks he would fall asleep no problem but just keep waking up. And nothing we did would keep him asleep. My husband has had to literally wear him all night to keep him somewhat asleep. He would still jump awake all night. Nothing we did helped!! I brought him in bed with me thinking he would sleep better. If I didn't nurse him into a deeper sleep he would fall asleep & jump awake. He normally cries if he sees my hubby wearing the carrier around sleep time but at this point he was begging to be in it because its like he knows its the only way he can stay asleep.
It seems like he can't get into a deeper sleep without help. He has always been this way & at about 4-5 months he started having these "infant shudders" where he would shake while falling asleep. It looked like a seizure. We went to the neurologist & they said it was just infant shudders (uncommon but normal) & he would outgrow them. He had an EEG but it was short & he did not have an episode while falling asleep during it. But he would always have the shudder while transferring into a deeper sleep. My thinking is that it seems like he outgrew it but maybe it just looks differently??
We are starting supplements for him to help him sleep but we have to go slowly because if you start all at once it can make them really sick. There are a lot of natural things you can do to try to help their bodies be able to relax. He is super hyper all day. And the last time he wasn't sleeping really at all he was up almost 24 hours (we went to the ER with him so that's why) & he finally crashed & slept a solid 5.5 hours.
When he wakes up sometimes he's dazed or seems to be asleep still. We can lay him down & he falls back asleep. Other times he wakes up by throwing his arms up in the air & shaking & then he screams. Sometimes he wakes up screaming & thrashing. I can most of the time calm him down by sitting next to his toddler bed & nursing him. But other times he just screams & cries & won't go back to sleep. Or he has to be worn. On a good night my hubby can lay him down in his bed after falling asleep. Other times he can't put him down or he wakes up. On good nights he wakes up 6-15 times. On a bad night he just won't sleep. If we didn't tend to him he would never get any sleep!
EVERYONE has told me that he needs to CIO. I tried night weaning (Dr Gordon method) him as a toddler before & he screamed & screamed. He has NEVER been that kid who can just lay on the couch when he's tired & fall asleep. He needs help. I've let him cry before when he got into bed with me & wanted to nurse but I was nursing his sister. He did eventually fall asleep. But then he still wakes up again. He jerks awake. I have worked with him on falling asleep on his own when he was younger.....we read books while he was nursing & I unlatched him before he was asleep so he just passed out on his own. I've never done a structured CIO or sleep training thing with him. I don't feel it will work. I feel he will just scream his head off.
My hubby, myself, my son, & my 7 month old all sleep in the same room. I've never been comfortable with the thought of him being in his own room (he wakes up & sort of sleep walks to my bed at night bumping into furniture etc) but we currently don't have that option. We have a 2 bedroom condo. We do what we have to do to make it work. If my youngest wakes up we take her quickly out of the room.
All I've ever heard is take him out of the room so he will sleep better. I have watched him wake up for no reason. There was no noise. He just wakes up. I don't think it has anything to do with anything.
We have been to a sleep specialist & he had a sleep study done that he would barely sleep through (they need them to sleep so they can see brain waves etc). We weren't concerned then because he had started sleeping better then. They referred us to the sleep psychologist. I don't think they will be able to help us though. I feel like EVERY DR we see blames us that we are spoiling him & there is no medical problem. WHY would a child not sleep for days or over a week just because their parent will get up with them. We took him to the Childrens ER the other night because we just don't know what to do. They ARGUED with us. Two Drs told us it was our fault & he needs to slowly be weaned off of us coming to him at night by replacing us with a stuffed animal etc (I'm guessing this is what the sleep psychologist will do) HA! Yeah...that's not going to happen. The one Dr asked us what he would do if we put him in a babyproof room with a babygate at the door so he can't get out. He said what will he do? Will he go to sleep? I don't even see how this would help him?? They think (even though we told him over & over) that he has a problem getting to sleep. It's not that! He just won't stay asleep!
Dealing with all of these Drs has really, really started screwing with my head. I'm now doubting myself. I know my child. I know we are doing what we have to do to survive. At least that's who it feels. Am I wrong to keep meeting his needs or do I need to wean him off of us coming to him? Last night we tried getting him to take a sippy cup & go back to sleep. He kept falling asleep & jerking awake. So I finally had to nurse him. I just don't know what to do. Everything everyone is saying is eating at me & I feel like it's all my fault. I know it isn't but I feel like it is. Our lives currently SUCK. Everything we do is about getting kids to sleep & catching up on sleep. It's so incredibly stressful.
I'm worried it's a medical problem like sleep seizures but no Drs will listen to us. If we tell them he sleeps in our room then that MUST be the problem! Or if we say we tend to him when he wakes up then that is the problem! We are doing these things because he won't sleep & it helps us survive but they won't see it that way. I'm so beyond frustrated. I just want to scream!!!!
We have a bedtime routine with low lights, classical lullaby music, bath, reading etc. He goes to bed at the same time everyday. I have tried.....white noise, deep pressure massages, different doses of sunlight, playing outside in the sun for long periods of time, a heating pad, warm baths, epsom salt baths, heavy blankets, all cotton pjs, all cotton sheets, unscented detergents....I'm sure there is more but I can't think of it. He is on the autism diet & doesn't eat processed foods, preservatives, sugar, high fructose corn syrup, honey, or food dyes.
So any input? I know this is so long. I'm so incredibly frustrated with everything. If you read it thank you. I'm just doubting myself so much. I've never seen a child who was nursed until they just stopped needing you at night so I don't know how this plays out in a "normal" child. We go to our pedi because we don't have many choices & they tolerate us not vaxxing. I feel like no Drs are listening to us.
But we can't keep living like this! Something has to give. It's totally insane.