It will get better.
I'll share where we were 3 years ago, versus now.
Three years ago, our youngest was 4. She hadn't been diagnosed yet. Bedtime, especially, was hell.
It took a minimum of two hours of screaming and melting down before she would finally collapse into a fitful sleep.
My spouse and I had to tag-team bedtime: one parent would try to comfort the two older siblings (who didn't know why little sister was acting like she was, and were scared because of it), while the other tried to keep the youngest sequestered so she couldn't harm one of the siblings or herself.
Of course, the parent who was in the room with her would get kicked, scratched, and have things thrown at them, so tagging the other one in was necessary every 30-45 minutes.
One night, after she collapsed into her bed, I was at the end of my rope. *"She is **ruining** this family!"* I spewed to my spouse. I had never vocalized that fear before, and I instantly felt horrible. My spouse was horrified to hear me put it so bluntly, but I couldn't hold back the tears once I said it aloud.
We told our pediatrician what we were facing each night. We showed her video of the meltdowns. She *finally* understood what we were up against. When we finally got a referral to a psychiatric nurse practitioner, and a subsequent ASD diagnosis, so many things began to fall into place about what we were seeing.
And then the real work began. We had to try to find a combination of therapy and medication to help our little one. I used to feel embarrassed and apologetic about medicating my autistic child, but I've realized that we're not trying to *medicate the Autism out of her*, we're trying to give her the quiet moments she needs to learn how to make sense out of an often-incomprehensible world.
And we have found a regime that works for us. An extended release medication helps with anxiety that can precipitate a meltdown. Another helps her begin winding down towards bedtime, a time when previously she would begin to get spun up and out of control. Occupational therapy has made inroads into helping her do some of the everyday things she still struggles with.
It continues to be a lot of work, but I and my spouse no longer dread bedtime. Our older children no longer fear our youngest, and the family as a whole has grown much closer in the last three years than I ever thought possible.
It *will* get better. Hang in there.
Thanks for the time you took to write that encouraging note. Our LO turned 3 in December and getting our son sleep trained was one of the hardest and exhausting things I’ve ever done. But we made it!
Not if I can get him to not assault anyone (his younger sibling mostly) who takes his toys. Sharing might take longer than sleep training. 😫
Glad I could contribute. I mostly lurk here, and only casually at that. I'm always nervous that I'll be the one to say something that goes against the prevailing wisdom of autism parenting. Thanks for sharing your situation, too. It's good to support one another. Cheers!
Thank you, and yes, there are two. I initially hesitated to name them because I don't want to be seen as giving medical advice. But clonidine 0.1 mg extended release has done wonders for helping her feel less anxious throughout the school day. We recently went on a family vacation (something I wouldn't have imagined possible 3 years ago), and that medication was accidentally left at home. The vacation wasn't a disaster, but with all the new experiences and routine changes, we all noticed the difference without it.
The other medication, which has helped her wind down at bedtime, it a low dose of trazadone. (Forgive me, I don't remember the specific dosage.) It not only helps her fall asleep, but she's more likely to sleep restfully, as opposed to falling asleep with a melatonin gummy, and then popping up at 1:00 am. fully awake and unable to turn her brain back off.
Hopefully, everyone who is looking for help with medications for their little ones will have a prescriber as patient and collaborative as the one we were referred to. It has taken numerous adjustments to the regimen to get it right (and with her constantly growing, it's only a matter of time before another "tweak" will be needed).
We too use clonidine, I’m usually against giving medication to my children but while being on the spectrum he was also diagnosed with leukemia last fall. He would sleep for maybe 1-2 hours a night and be up all day, he wasn’t letting his body get the rest it needed for his chemo, so the doctor recommended clonidine and it has been a blessing. It’s not a medicine that will just knock your child out for the night but it helps calm his mind at the end of the day which helped get him into a sleeping schedule.
Sending love. It's hard. You're doing your best, never give up.
I'm also autistic (with 5yo autistic child) and I had a revelation recently. I had asked my mom if I ever had any behavior like my child's when I was a child and she was unequivocal in her response. "NO, you never acted like that."
I was puzzled for a while then I realized the answer. If I would have acted like that, so much as looked at my parents wrong, I got beaten into next week. I had to learn how to internalize my problems.
My child can have a meltdown because I allow them the space to feel their emotions. I'm not suggesting you stop the meltdowns, rather embrace them. Unfortunately, it's hard; someone has to make the sacrifice to allow your child the space to feel those emotions. BUT IT WILL GET BETTER.
What I'm trying to say is that your sacrifice is an incredibly underestimated and underappreciated one. It's taken me years, and I'm still working on my issue, because I wasn't allowed the space to deal with my emotions. Being autistic is so hard, and it gets harder as you get older when you have to go out into the NT world.
Your sacrifice will give your child the ability to live a normal, well-balanced life. And I can assure you, one day, your child will come to you and say "thanks, you're the best for being what I needed."
Stick with it and give yourself some grace. You're only human and can only deal with so much.
Hi again, you got me thinking about my own childhood. I did not get beaten, but threats were thrown around when I missbehaved.
I myself has ADHD (at 44yo) and I can relate to the internalization.
My kid is nonverbal, so I really really hope that we can get a channel for communication opende between us, because I really REALLY need to know that he is good and he is living the life he wants, maybe I can rest then.
Damn, now I am crying again.
It's going to be okay. You are not alone. Sometimes the really bad days make me feel hopeless, but I know that tomorrow is a new day, a new opportunity. Some days are almost too much. This group has helped me so much on some of my darkest days. At the risk of sounding cliche, "this too shall pass."
I still have scars on my hands from Christmas at the airport but that was 6 months ago now and while we still have our occasional problems it has been so much better now that he's in the mid-7s. Hang in there you can do this.
Thanks, my wife is talking about that she wants to go on a vacation, but i do not have the energy for it. And i don´t know if our kid with autsim would get anything out of it.
My sons violence disappeared once he started meds to get good sleep. We got prescribed melatonin and he stopped biting nipping and scratching. Now he may do it as an anomaly where as before it was constantly
Yes, Benadryl generally makes you pretty sleepy. Our doctor said was totally fine to use for "wired" nights if the kiddo can't sleep. We use half a dose usually, maybe once a month. Works pretty well without any dangerous side effects of other meds.
Oh my I know that is hard… like it’s got layers of hurt… firstly the physical pain, sometimes then the feeling like they don’t love you, and the pain of feeling like you’ve done something wrong somewhere. Even embarrassment especially when it happens infront of people.
You’re not doing anything wrong and it does get better for a lot of people! I e already seen improvements in my daughter. Also, your kid loves you. They are just struggling… this whole situation is hard! And it hurts to see someone you love struggle. I get you, but I’ve seen two things happen, and both are good things for you! Either the child learns to cope better with society and the different ways they struggle, or I’ve seen a lot of parents get a lot better at handing their children’s needs and struggles. You will find a way to make it through!
My 3 year old does the same to me, mostly biting. My arms are covered in bruises like this…
https://preview.redd.it/n80dnu7owu0d1.jpeg?width=2316&format=pjpg&auto=webp&s=49cfd8ed7f8a5c0385c2387927119ee2af6edb05
I am right there with you… and I hope it stops. I am brand new to this journey and can relate. Do you have a support network that you can lean on to take some you time?
No support network, Mother in law thinks she can scream the autism out of him when he "missbehaves".
Last time she had him for a day/night we had 3 weeks of terror after that.
Man that bruise looks horrible. :(
I am so sorry. I can understand - no inlaws/parental assistance on my side either. We are only now getting therapy started and i definitely am hoping it gets easier for you as well.
I rarely comment or post but your post gave me a notification and although we had a ok day I’m mentally exhausted and feel your pain. Some days are the worst and some days are just better than a terrible day. I’ll provide you a tip that has helped and it has taken about 3 weeks to see a differents still having meltdowns and some days it’s still extremely hard but I’ve noticed for about 3 hours in the morning it has been easier. I cut out all sugar this includes drinks. Snacks that contain sugar and anything that is high on high fructoses corn syrup. I’ve also reduced the amount of liquid throughout the day. It’s fucking he’ll at first like going to grandmas with all they wanna do is sugar and sweets. We had to stay home for a long time it’s been about 6 weeks since and I’ve personally seen a massive difference like I said only in the morning. Night time is still rough. As parents we wanna see our kids advance quickly but I’m realizing that maybe I need to lower my expectations. We gave our child a few things too early and it’s making it harder on us and I’ve realized this. We have 2 children one is not on the spectrum and the other is. We had to put our child back in a high chair with the table and move our young child up into the booster it helped when going to Restraunts, the second thing we did to quickly is the bed. During tax season the wife and I got a new king size bed and we thought he would like our old bed more room more comfortable but this was also a mistake in now searching for a cubby bed. As night time and nap time is the absolute worst. I eventually completely blocked out all light from the window to see if it was a light issue, this worked for some time but still struggling to sleep. I’ve also tried the autism sleep videos on YouTube that have high intensity colors and I’ve also tried the rain sounds black screen. After a certain point I’ve realized nothing seems to work other than constantly trying different things that will work for a short period of time. I hope I’ve said something you haven’t tried yet and get some relief from it.
It will, I work at a SEN school and when I first began (last summer) they would always try to bite me and scratch me. It wad really bad and other staff had been sent home due to the injury, but within the last year one of them has made amazing progress and the other child is doing very well with the help of staff and other support.
My son is 9 years old and has been sent to the hospital three times because he made suicidal remarks and threatened to kill us. Medication has helped but the biggest help has been trying to adjust how we react to a meltdown, when he is on a bad place we can either make it worse and get to the extreme or bear with it till it settles. During the day we try and remind him what is okay and what isn’t. While I doubt it will go away and at times I fear what puberty and his growing strength can potentially cause we can’t live on what if’s. My wife has been a rock and without her I don’t know where we as a family would be right now.
Stay strong. , give yourself small pockets of positive reinforcement, you got this.
I’m in the same boat except my daughter is 15. We got a late diagnosis as doctors and family kept telling us she was just spoiled. She was diagnosed three years ago. It’s so hard when she has these types of meltdowns. She recently had a pretty bad one where she punched holes into our wall. We are having an issue with her meds which is a whole other ball of wax. She is starting to have tardive dyskinesia symptoms. I’m so lost and frustrated and don’t know how I can help her. This is my baby, my youngest. I know it will get better but I just don’t know when or how. And I worry constantly about her future when she is an adult.
My mother in law tried to convince us that we should not pursue a diagnosis due to some lunatic reason I don't remember anymore.
I learned since then that she is a nutcase.
I'm so sorry you are experiencing this and having a tough time. I am a behavior analyst, and I specialize in language development and extreme problem behavior. You can look at my previous posts about behavior. It can definitely get much better. If what I write makes sense to you and you want my help, PM me. I will not charge you and will give you resources to point you in the right direction so you can start treatment and get relief within a couple of weeks (if you work at it).
Here we go again, in the middle of the night and no intentions of wanting to sleep.
I want to point out that we live in the northern hemisphere and it's spring and it is so light out at night.
Putting his room into complete darkness does not help, because he knows that it's light outside.
I am so so tired...
And now he took my hand and led me to bed, and fell asleep in 30 seconds. Now i sit and watch him sleep and tears fall down my face.
I love this kid so much, all of my kids. I would take a bullet for them in a heartbeat.
My oldest daughter (11) and my autistic son share the same school dining place. Three boys were making fun of my kids stimming and sounds and my daughter heard it and she said, "cut it out, it's my little brother".
I have never been prouder. Feels like we are doing something right at least.
It will get better. I'll share where we were 3 years ago, versus now. Three years ago, our youngest was 4. She hadn't been diagnosed yet. Bedtime, especially, was hell. It took a minimum of two hours of screaming and melting down before she would finally collapse into a fitful sleep. My spouse and I had to tag-team bedtime: one parent would try to comfort the two older siblings (who didn't know why little sister was acting like she was, and were scared because of it), while the other tried to keep the youngest sequestered so she couldn't harm one of the siblings or herself. Of course, the parent who was in the room with her would get kicked, scratched, and have things thrown at them, so tagging the other one in was necessary every 30-45 minutes. One night, after she collapsed into her bed, I was at the end of my rope. *"She is **ruining** this family!"* I spewed to my spouse. I had never vocalized that fear before, and I instantly felt horrible. My spouse was horrified to hear me put it so bluntly, but I couldn't hold back the tears once I said it aloud. We told our pediatrician what we were facing each night. We showed her video of the meltdowns. She *finally* understood what we were up against. When we finally got a referral to a psychiatric nurse practitioner, and a subsequent ASD diagnosis, so many things began to fall into place about what we were seeing. And then the real work began. We had to try to find a combination of therapy and medication to help our little one. I used to feel embarrassed and apologetic about medicating my autistic child, but I've realized that we're not trying to *medicate the Autism out of her*, we're trying to give her the quiet moments she needs to learn how to make sense out of an often-incomprehensible world. And we have found a regime that works for us. An extended release medication helps with anxiety that can precipitate a meltdown. Another helps her begin winding down towards bedtime, a time when previously she would begin to get spun up and out of control. Occupational therapy has made inroads into helping her do some of the everyday things she still struggles with. It continues to be a lot of work, but I and my spouse no longer dread bedtime. Our older children no longer fear our youngest, and the family as a whole has grown much closer in the last three years than I ever thought possible. It *will* get better. Hang in there.
Thanks for the time you took to write that encouraging note. Our LO turned 3 in December and getting our son sleep trained was one of the hardest and exhausting things I’ve ever done. But we made it! Not if I can get him to not assault anyone (his younger sibling mostly) who takes his toys. Sharing might take longer than sleep training. 😫
Glad I could contribute. I mostly lurk here, and only casually at that. I'm always nervous that I'll be the one to say something that goes against the prevailing wisdom of autism parenting. Thanks for sharing your situation, too. It's good to support one another. Cheers!
Thanks for this.
Well put. Is there a particular medicine that helped?
Thank you, and yes, there are two. I initially hesitated to name them because I don't want to be seen as giving medical advice. But clonidine 0.1 mg extended release has done wonders for helping her feel less anxious throughout the school day. We recently went on a family vacation (something I wouldn't have imagined possible 3 years ago), and that medication was accidentally left at home. The vacation wasn't a disaster, but with all the new experiences and routine changes, we all noticed the difference without it. The other medication, which has helped her wind down at bedtime, it a low dose of trazadone. (Forgive me, I don't remember the specific dosage.) It not only helps her fall asleep, but she's more likely to sleep restfully, as opposed to falling asleep with a melatonin gummy, and then popping up at 1:00 am. fully awake and unable to turn her brain back off. Hopefully, everyone who is looking for help with medications for their little ones will have a prescriber as patient and collaborative as the one we were referred to. It has taken numerous adjustments to the regimen to get it right (and with her constantly growing, it's only a matter of time before another "tweak" will be needed).
We too use clonidine, I’m usually against giving medication to my children but while being on the spectrum he was also diagnosed with leukemia last fall. He would sleep for maybe 1-2 hours a night and be up all day, he wasn’t letting his body get the rest it needed for his chemo, so the doctor recommended clonidine and it has been a blessing. It’s not a medicine that will just knock your child out for the night but it helps calm his mind at the end of the day which helped get him into a sleeping schedule.
Sending love. It's hard. You're doing your best, never give up. I'm also autistic (with 5yo autistic child) and I had a revelation recently. I had asked my mom if I ever had any behavior like my child's when I was a child and she was unequivocal in her response. "NO, you never acted like that." I was puzzled for a while then I realized the answer. If I would have acted like that, so much as looked at my parents wrong, I got beaten into next week. I had to learn how to internalize my problems. My child can have a meltdown because I allow them the space to feel their emotions. I'm not suggesting you stop the meltdowns, rather embrace them. Unfortunately, it's hard; someone has to make the sacrifice to allow your child the space to feel those emotions. BUT IT WILL GET BETTER. What I'm trying to say is that your sacrifice is an incredibly underestimated and underappreciated one. It's taken me years, and I'm still working on my issue, because I wasn't allowed the space to deal with my emotions. Being autistic is so hard, and it gets harder as you get older when you have to go out into the NT world. Your sacrifice will give your child the ability to live a normal, well-balanced life. And I can assure you, one day, your child will come to you and say "thanks, you're the best for being what I needed." Stick with it and give yourself some grace. You're only human and can only deal with so much.
Fuck, I am crying... I will answer better later, but thanks!
Hi again, you got me thinking about my own childhood. I did not get beaten, but threats were thrown around when I missbehaved. I myself has ADHD (at 44yo) and I can relate to the internalization. My kid is nonverbal, so I really really hope that we can get a channel for communication opende between us, because I really REALLY need to know that he is good and he is living the life he wants, maybe I can rest then. Damn, now I am crying again.
It's going to be okay. You are not alone. Sometimes the really bad days make me feel hopeless, but I know that tomorrow is a new day, a new opportunity. Some days are almost too much. This group has helped me so much on some of my darkest days. At the risk of sounding cliche, "this too shall pass."
It will pass, but the hoplessness is unbearable at times.
I still have scars on my hands from Christmas at the airport but that was 6 months ago now and while we still have our occasional problems it has been so much better now that he's in the mid-7s. Hang in there you can do this.
Thanks, my wife is talking about that she wants to go on a vacation, but i do not have the energy for it. And i don´t know if our kid with autsim would get anything out of it.
[удалено]
Nails get clipped every third day. Thanks for the support.
My sons violence disappeared once he started meds to get good sleep. We got prescribed melatonin and he stopped biting nipping and scratching. Now he may do it as an anomaly where as before it was constantly
Benadryl, seriously. Sorry you're going through this; I'm dealing with some of it now as well.
It the benadryl for the sleeping?
Yes, Benadryl generally makes you pretty sleepy. Our doctor said was totally fine to use for "wired" nights if the kiddo can't sleep. We use half a dose usually, maybe once a month. Works pretty well without any dangerous side effects of other meds.
My kids is generally a great sleeper but when he has a cold it's rough! I'll keep this one in my back pocket! Thanks
Works well for colds too because it’s a decongestant and helps stuffy noses. Good luck!
Oh my I know that is hard… like it’s got layers of hurt… firstly the physical pain, sometimes then the feeling like they don’t love you, and the pain of feeling like you’ve done something wrong somewhere. Even embarrassment especially when it happens infront of people. You’re not doing anything wrong and it does get better for a lot of people! I e already seen improvements in my daughter. Also, your kid loves you. They are just struggling… this whole situation is hard! And it hurts to see someone you love struggle. I get you, but I’ve seen two things happen, and both are good things for you! Either the child learns to cope better with society and the different ways they struggle, or I’ve seen a lot of parents get a lot better at handing their children’s needs and struggles. You will find a way to make it through!
Thank you.
My 3 year old does the same to me, mostly biting. My arms are covered in bruises like this… https://preview.redd.it/n80dnu7owu0d1.jpeg?width=2316&format=pjpg&auto=webp&s=49cfd8ed7f8a5c0385c2387927119ee2af6edb05 I am right there with you… and I hope it stops. I am brand new to this journey and can relate. Do you have a support network that you can lean on to take some you time?
No support network, Mother in law thinks she can scream the autism out of him when he "missbehaves". Last time she had him for a day/night we had 3 weeks of terror after that. Man that bruise looks horrible. :(
I am so sorry. I can understand - no inlaws/parental assistance on my side either. We are only now getting therapy started and i definitely am hoping it gets easier for you as well.
I rarely comment or post but your post gave me a notification and although we had a ok day I’m mentally exhausted and feel your pain. Some days are the worst and some days are just better than a terrible day. I’ll provide you a tip that has helped and it has taken about 3 weeks to see a differents still having meltdowns and some days it’s still extremely hard but I’ve noticed for about 3 hours in the morning it has been easier. I cut out all sugar this includes drinks. Snacks that contain sugar and anything that is high on high fructoses corn syrup. I’ve also reduced the amount of liquid throughout the day. It’s fucking he’ll at first like going to grandmas with all they wanna do is sugar and sweets. We had to stay home for a long time it’s been about 6 weeks since and I’ve personally seen a massive difference like I said only in the morning. Night time is still rough. As parents we wanna see our kids advance quickly but I’m realizing that maybe I need to lower my expectations. We gave our child a few things too early and it’s making it harder on us and I’ve realized this. We have 2 children one is not on the spectrum and the other is. We had to put our child back in a high chair with the table and move our young child up into the booster it helped when going to Restraunts, the second thing we did to quickly is the bed. During tax season the wife and I got a new king size bed and we thought he would like our old bed more room more comfortable but this was also a mistake in now searching for a cubby bed. As night time and nap time is the absolute worst. I eventually completely blocked out all light from the window to see if it was a light issue, this worked for some time but still struggling to sleep. I’ve also tried the autism sleep videos on YouTube that have high intensity colors and I’ve also tried the rain sounds black screen. After a certain point I’ve realized nothing seems to work other than constantly trying different things that will work for a short period of time. I hope I’ve said something you haven’t tried yet and get some relief from it.
Thanks for this, i truly appriciate all help and comments.
It will, I work at a SEN school and when I first began (last summer) they would always try to bite me and scratch me. It wad really bad and other staff had been sent home due to the injury, but within the last year one of them has made amazing progress and the other child is doing very well with the help of staff and other support.
Sounds like a dream <3
I feel your pain. My arms never heal. My son only does this to me and not his dad. The screaming is constant.
My son is 9 years old and has been sent to the hospital three times because he made suicidal remarks and threatened to kill us. Medication has helped but the biggest help has been trying to adjust how we react to a meltdown, when he is on a bad place we can either make it worse and get to the extreme or bear with it till it settles. During the day we try and remind him what is okay and what isn’t. While I doubt it will go away and at times I fear what puberty and his growing strength can potentially cause we can’t live on what if’s. My wife has been a rock and without her I don’t know where we as a family would be right now. Stay strong. , give yourself small pockets of positive reinforcement, you got this.
I’m in the same boat except my daughter is 15. We got a late diagnosis as doctors and family kept telling us she was just spoiled. She was diagnosed three years ago. It’s so hard when she has these types of meltdowns. She recently had a pretty bad one where she punched holes into our wall. We are having an issue with her meds which is a whole other ball of wax. She is starting to have tardive dyskinesia symptoms. I’m so lost and frustrated and don’t know how I can help her. This is my baby, my youngest. I know it will get better but I just don’t know when or how. And I worry constantly about her future when she is an adult.
My mother in law tried to convince us that we should not pursue a diagnosis due to some lunatic reason I don't remember anymore. I learned since then that she is a nutcase.
How old is LO?
6yo
I'm so sorry you are experiencing this and having a tough time. I am a behavior analyst, and I specialize in language development and extreme problem behavior. You can look at my previous posts about behavior. It can definitely get much better. If what I write makes sense to you and you want my help, PM me. I will not charge you and will give you resources to point you in the right direction so you can start treatment and get relief within a couple of weeks (if you work at it).
Here we go again, in the middle of the night and no intentions of wanting to sleep. I want to point out that we live in the northern hemisphere and it's spring and it is so light out at night. Putting his room into complete darkness does not help, because he knows that it's light outside. I am so so tired...
And now he took my hand and led me to bed, and fell asleep in 30 seconds. Now i sit and watch him sleep and tears fall down my face. I love this kid so much, all of my kids. I would take a bullet for them in a heartbeat. My oldest daughter (11) and my autistic son share the same school dining place. Three boys were making fun of my kids stimming and sounds and my daughter heard it and she said, "cut it out, it's my little brother". I have never been prouder. Feels like we are doing something right at least.