The Torture Of Putting Kyle To Sleep On Some Nights… (with audio!)
December 5, 2012
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Now Reading: The Torture Of Putting Kyle To Sleep On Some Nights… (with audio!)
December 5, 2012
Ok, so I’m writing this at 1:15am on Tues nite/Wed morning Dec 4-Dec5 cuz I can’t sleep.
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Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
18 People Replies to “The Torture Of Putting Kyle To Sleep On Some Nights… (with audio!)”
omg my older kids thought that was thier sister came running out to tell me she was awake laughing. She does the same thing….its not as often now for us clonidine was our miracle drug. She doesn't sleep period without it. Melaton didn't knock her out but it made her crappy and caused agression. but it does do magic for alot of our kido's. Trust me I've had those nights….just a week ago in fact..my daughter kept making her self cough and throw up… she threw up her bedtime meds 3 times. So I didn't try a 4th. I laid at the bottom of her bed and she would get up and jump….laugh. get in the window. I locked us in her room so she couldn't open her door and I unscrewed the light bulb it was pitch black. I would dose off and set my timer to go off every 20 minutes….she was never in the bed never asleep, I caught myself yelling at her a few times but omg I was soooo tired. At 6am I get up and shes sitting there laughing. She went to school and functioned very well for no sleep I on the other hand…..was not a very nice mommy, not proud of my lack of patience that night
I am not even there but I felt frustrated….I've had many of those nights…my son is 11.5, and we still go through it….BUT…I think he's getting a lot of reinforcement from you…..I know…I used to do this too….stop kicking…go to sleep….sigh….stop laughing….uggghh!! It can make anyone go nuts…especially when all I want is 30 minutes of peace to watch TV (just once all day)….BEST BET…don't SAY ANYTHING …ignore, ignore, ignore…..it's so crazy it just might work for your son…..my son still takes about that long to calm down and go to sleep, BUT, if I reinforce the behavior, he spirals more out of control, and 45 minutes turns into hours…..
Love this blog!
We like a Tenex-Melatonin-Calms Forte cocktail in our home, though it only seems to work every other night. I'm told that life will get easier with Risperdal. Thank you for sharing this. Really!
All Hail Melatonin! It restored sanity to my home. There are no side effects that I can see except a good night sleep. We've been using it 3 years.
yep this is why we love you autism daddy – because when we write it down it all sounds whingy and moany and when you write it down it sounds cute and funny and people take notice and it is fab autism awareness x oh hail autism daddy xxxxx
I never once looked at this as you complaining. I think it is a great service you do for others, to help them realize that you are human and have frustration like they do. I have a friend who I sent to your page, so that she could see that she was not alone. Thank you once again for your honesty. Oh and I did not hear you yelling 😉
My son is four today. Listening to this audio made me say "wow" because your sons breath holding sounds just like my sons… he does it on purpose and thinks it's great. My son doesn't hold for as long as yours probably because he doesn't have the lung capacity, yet lol. I'm curious what they do for him in his therapy for it or if it's common behavior for an autistic kid?
Please don't take this the wrong way, I'm sorry your going through this. BUT your blog made me smile and changed the rest of my day! Josh has been going to bed later and later, trying to keep him on schedule always revolves on what time I can get him in the tub. He takes Clonidine for sleep at 7pm and should be getting tired by 8:30, should be. If I can get him out of the tub by 9 or 9:30 then he goes to bed,and bangs, asks for a cough drop (he had a bad cold last year and has this thing for wanting to go to bed with a cough drop)asks for a drink, bangs somemore or is constantly asking Mom am I good ? Mom are you in bed? Mom I'm not tired can I drawl? Now we already went round and round to get him in the tub so Im near meltdown and last night he was up banging at 1am, woke me up and said I need band aids, my fingers hurt. He banged on his walls, which have a rough texture(previous owners creativity at it's worst)and his knuckles are bleeding. Also, once up, he wants to get dressed for his day. He wears a pullup to bed so the rule is , get dressed as soon as you get up. It was a good rule when he wasn't waking at 1am. So now I have to get up bandaid him, find the right matchboxs to sleep with(one in each hand)one was under the bed and the other was out in my truck.Had to be those two !! and pray he goes back to sleep. Just thankful he went to sleep,of course we woke the dog who had to go out and the cat saw my feet hit the floor so he had to be fed, but I was in bed again at 2am. Alarm goes off at 5am ! I get ready, make lunches and load truck before I even wake him, now because of us both being sleep deprived his "Okay buddy lets get up" was horrible, literally had to pivet him around and pull him into upright position while he tried to get away from me. Well it pretty much went downhill from there until the bus came. I will clean up the laundry basket he knocked down the stairs, the Christmas ornaments that flew off the tree and the sugar he decided to swirl all over the counter when I get home.Also had to call my neighbor to see if I let the dog back in, and closed the garage door.Door is closed, dog is pissed ! I get to work wishing someone would schedule a time for naps and I saw your blog !! Patience is hard and yelling does no good, but seeing that other people are going through a lot of the same things or worse makes me take a step back and think, okay bad night, move on ! I'm not perfect and it's not easy, will it get better ? Who knows ? but sometimes you need to see it from someone elses perspective. The world won't end if I don't get enough sleep, as long as Coffee is available I will keep going !! Thanks for your blog !! You and your wife are Awesome !! 🙂
I'm curious about the melatonin, I too used to think it was a miracle drug, then I saw sleep expert on tv who made it sound like it was a very bad idea for long periods of time especially in children. We had been using it for over 2 yrs. So we stopped to see what would happen, my son still falls asleep after he's allowed to play with his legos-much later than I would like- but he still wakes every night-which he also did on melatonin. The "expert" said melatonin should only be used to reset the sleep cycle its not meant as a sleeping pill, it's also not as natural as it's touted. I have felt we couldn't live without it but do worry that it may have some bad side effect down the road. Have you done any research about it? And I too think you're a great dad to be this involved!
A weighted blanket is the treatment for sleep in autistic children. Such a simple thing does wonders. You can also use them when the child is agitated because the gentle weight on the body soothes. I am on the spectrum, and I sleep with a 34 lb queen on my bed. ~Eileen.
I am sorry you are going through this but I love this blog. My son's teachers don't understand this issue at all and we go through hell at every iep regarding this. I am going to send them a link to your blog so they start having some insight as to what it is like to live with autism in the family. Thank you for making us remember that we are not going through this alone.
That breath holding is amazing. I'm sure it's calming. I've done stuff like that for yoga. Must release some kind of hormone.
If that's yelling I must really be going off the deep end when I yell out of frustration. Now I'm really embarrassed. I think you handled it quite well 🙂
I was thinking the same thing!! You're way too hard on yourself Autism Daddy!! You ROCK!!
I can really relate to this. Our guy is almost 15 and we have a very established going to sleep routine that works like a charm…usually. It hasn't always been easy, though. It took us YEARS to teach him to go to sleep on his own. I didn,t have much help with ideas from therapists or what not, I just buckled down and said this is how we are going to do this thing! The process was so slow that I would cry some nights thinking he would never get it. He got it and is all the better for it now. With him we had a huge issue in that if he fell asleep and then woke back up he was UP. Didn't matter how long or short he had slept. Heck, I was the one holding MY breath just hoping he would stay asleep. Didn't hear about Melatonin until this year. We've never used it but I bet I would have tried it back then! Best wishes to you all!!
This is great stuff, man! I'm a single dad with a 14-y/o high-functioning lad. Yes, pre-melatonin was a struggle! I hope your blog is good therapy for you – and I LOVE the way you rah-rah your wife as it's very difficult to maintain a healthy relationship while raising a spectrum kiddo. I expect your friends with neuro-typical kids marvel at the amount of patience you show!
I went over that few times until he start drinking coffee before bed, yes is crazy but he is also ADHD so after 3 and a half years of trying everything I found coffee helps him to sleep. Also I know how the laughing for no reason can drive you insane, is something I can tolerate much and I'm pretty patient, but I want to end my comment saying you are a remarkable father because you are there for him, others like my ex they don't care and think raising a kid on the spectrum is not big deal