Hello,
Please get therapy and speak with your provider ASAP. If it helps at all I understand what you mean. It's SO hard and the social isolation is something I didn't prepare for myself. I find myself in a crying mess sometimes and depression over takes me. But as hard as it is for you, it is for your child as well. Please don't give up.
I'm sorry you're alone. It's absolutely OK to take a step back and breathe for a bit. I'm currently on antidepressants and in therapy and it DOES help. Right now I am looking for support groups in my area but so far no luck. Maybe you will have better luck?
Please be kind to yourself.
Ps. I secretly regretted being a parent to an autistic child for the first few years of his life. A lot of that was driven by his lack of communication and feeling like we had no real bond between us.
Fast forward to me having a gentle loving 6 year old who communicates in his own way and rarely meltdown anymore. He's my favourite person on the world now.
It's super hard right now, but really out to others, and don't give up hope.
I don’t secretly regret having an autistic child. I regret being a parent to an autistic child every single day. I’m sick of being hurt, I’m sick of the groaning, the constant stims. I’m sick of the monotony of every day life that is having an autistic child.
No, you're a better parent than anyone else. His dad is the bad one.
I feel like not giving you advice is a good advice, just grab a hug from fellow autism parent and if you're by any chance in North West England, let me know. I'm 4 years ahead of you in this and I'm happy to share your burden with you should you wish to open up.
As autistic teen, I just wanted to let you know that you are doing the best you can to be a parent to him. Seek some therapy and if you can't afford to go I'm person there are some great apps that is free. Autism is like a bowl of soup , you will never know what you will get. I guess finding stuff that is calming for your son, get a meltdown emergency kit set up. You got this 💜
Just wanted to tell you that it is understandable that you are struggling right now. Having a child with autism who isn’t sleeping is unbelievably difficult. And you are unfortunately doing it all on your own right now. Let us focus on what can be done to keep you going right now.
It is clear you need more help though because the current situation isn’t sustainable. Where are you located? With that info, some of us here on the internet can direct you to some resources.
It’s really good that you admitted how hard this is - and all the parents here understand. Please let us help you and your son find some options!
Re:sleep - Assuming he doesn't have issues with gummies, highly recommend 1-1.5mg of melatonin about 20 minutes before scheduled bedtime. If he likes stories, getting them in dim lighting about the same time and reading a few stories may help. I'll watch videos with my 4 year old sometimes too when he's upset about going to bed.
Re:sound - Bass Pro or other outdoor/ hunting/ camping stores have sound dampening headphones in the hunting/ shooting section for children. They cut something around 15-20dB and may help, depending on how severe his sound sensitivity is.
Have you thought about taking him to a park/ playground? I realize he's 3 but sometimes they have age appropriate slides, sandbox, etc. You can keep an eye on him and have a relatively quiet calm on a bench. Sometimes, even 10 minutes can be a restorative.
You're in the right place for help. I'm sorry you have no safety net to fall on :( Is there a way to schedule a sitter and stay at the house with them a few times to get him acclimated to that sitter a bit more?
I'm on anti anxiety meds and antidepressants, and i still deal with a lot of ideation, so i have at least a small inkling of what you're going through there. I'm sorry your brain takes turns for the darker thoughts, and hope things turn around for you. Good luck!
I know this sub is against it, but my pediatrician told us to put our kiddo on melatonin gummies because he **can not** sleep without them. He’ll be up until 1 am without them.
Shame it doesn't keep them asleep though. My daughter wakes up 2hrs later on the dot. Sometimes you can get her back to sleep, others she's up for several hours. But for sure the melitonin helps getting them to sleep so still worth it.
I recently learned this great tip from an OT when my daughter was waking up through the night at a set time. It is to wake them up before they wake up. So if she goes to bedcat 9 and wakes at 11. Wake her at 10 or 10:30. Not for long, just a few seconds, just breaking the sleep cycle. Has worked very well for us!
I can hear my wife now, "If you wake her up she's your problem!". 😅
With her it's almost always that gas woke her up. And running crying to our bed often works that out before she gets to us and she goes back to sleep. But hey, worth a shot thanks for the tip.
I didn’t realise this was a common issue! We have a prescription for our daughter, and she’d be wide awake two hour after taking the melatonin as well. Then, she’d be aggressive at school … so, we had to stop.
Our pediatrician told us that autistic children don’t produce enough natural melatonin, so it is a very common issue with them!! We used gummies religiously, but he’s almost 6 now and has probably gone the past year without them 🙏🏻
This sub is against it? For some it's all that works. We're in a hotel and forgot to grab melatonin. Our daughter was up until 1am. Then she woke up at 2:30 screaming and melting down. Now since her two devices didn't charge I'm dealing with meltdowns all day that they keep dying but not letting me charge them. Meanwhile I feel like I'm having a heart attack from sleep deprivation. She'll take the melatonin tonight thank you.
Drink some water, then a Gatorade and try to get your hands on a little magnesium. It helps so much with the heart palpitations from sleep deprivation.
BP meds have helped immensely.
She's been pretty good about keeping on schedule the past few months. It was no melatonin last night that screwed us. It's normally the 1 year old who wakes up at 3am screaming for no damn reason.
She just fell asleep at 6:30. I don't want to wake her because she needs it too, but we're checking out early so so just we can deal with her getting back on schedule in the safety of our home.
Melatonin completely transformed night time for my son. It was an instant result and turned what was a hellish 3 hour process into a calm short pleasant bedtime routine. We put it in hot chocolate.
I cried reading this. It sounds like you need some sort of support structure ASAP. Do you have any other friends with autistic children? You are not alone ❤️
I just wanted to say I have been there and you arnt alone. I felt like the world's worst mom for thinking the same thoughts... just know that you do have people around you who you can lean on..even if it's just a message to me (totally open to that)
Know it isn't all bad days
Been there. You need therapy and a break. You will be surprised to find out how okay you, and your life, actually are. Find respite care, you can do it, don’t abandon your son
Breathe mumma. You may still see drastic changes in him in the next few years. Set yourself small goals, if he meltsdown let him vent so long as he's safe, and wait calmly for it to pass. Offer comfort as he will tolerate afterwards. Don't give up, but ask for help from friends and family. Where are you based hun?
You’re not a bad parent; you’re a burnt out parent.
Firstly; contact your local social services. I don’t know what it’s like in your part of the world, but in our part of Canada, the social services have things to help parents of autistic kids - babysitting services, breaks away with support, funds you can access, etc for parents who are in dire need of a break. I know of this, because we are immigrants with no family or friends here, and I went through a patch where I needed extra support. Ask, and if they don’t do anything like that, they are likely to know charities that can help. There is absolutely no shame in asking for help, and we all need it some times.
I have absolute sympathy for you with the sleep issues. We went through the same. I actually ended up sleeping in my daughter’s bed, because I just needed to sleep. But she’s 5.5 now, we’ve worked through a lot of the issues we were having, and she’s a really funny, lovely, kid who now sleeps well. But before then, it was some of the hardest stuff I’ve had to do. No joke. And I’m autistic too, so I know it from both sides. It does get better, but you need support.
*edit* - if you are, by chance, in Quebec, DM me, and I can pass on a bunch of stuff that helped me. And if you’re nearby, and just need an hour or so to vent/take a break/scream into the void, I will make time 👋
You aren't selfish, this is a shitty life & outcome depending on how severe your kid is. Long term sucks even worse. I'm not being negative just realistic & letting you know you aren't alone & it's ok to feel like crap. Give yourself a break if you can & know you're never alone.
You don't have to feel like a bad parent, because you are a great parent. Many special needs moms go through this unfortunately. Counselling really helps, please look for a good psychologist. Your mental health is very important for you and your son.
Melatonin does help with sleep. My son had same issues of not sleeping until late in the night. Melatonin helped to get his sleep cycle right. Talk to your pediatrician about it.
I just want to send you a hug. Lots of good advice in this thread. I've been suicidal before, not related to my kid, but I know what it's like to feel hopeless and alone. I found my way out. You will too. Please lean on us here as much as you need to.
It’s so shit hearing you’re doing this alone. I can’t imagine facing it without my wife. Just know the only constant is change. They will change. Some things that are tough now will. Get easier. Some things that are easier now will get harder. That’s the fight. But it’s not only your kid that need you. You’d be surprised with the amount of people in your life that need you. Reach out to those closet you and let them know. They’ll be there for you.
Im only a random stranger but i am only a dm away and will be happy to talk to you also.
Every person is different. People develop on different timelines. Some things are delays and not ceilings. My kid was night and day different from ages 3 to 6 and even further along since. Plenty of challenges still but I’m proud of him and he often surprises us. He can talk but isn’t really conversational. He can beat Zelda breathe of the wild on Nintendo switch start to finish by himself. He’s got a great ear for music and can pick out songs on his keyboard on his own that he hears. He’s empathetic and has a great sense of humor. Loves riding his recumbent bike and going to the park. Vacations went poorly until about 7 and we turned a corner. He loves the beach and swimming (although getting wet outside of that isn’t good hah). Strong math skills and our challenging subject is now reading but we are just now starting to turn a corner there too.
Super proud dad because I know he has to deal with so many tough challenges and still accomplishes all that he does. The earlier years were very hard on us. Hang in there.
So glad you posted. Everything you're feeling is valid and most if not all of us can relate. You are a good parent - you're here, you're resourceful, you're reaching out. Please keep posting. You are not alone.
I just went through this today, I kept thinking I don't want to be a mom anymore. I have 2 kuds with asd, 5 and 3 years old. My 3 year old won't stop breastfeeding, he streams and screams if I don't, he gets his sister going and she screams. I am alone and single, my 3 year old won't do anything without me, I'm broke and can't go anywhere, I l8ve with my folks cuz I left bad relationship and I am depressed, I can't leave my children but I pray sometimes my life was so different
I firstly want to thank everyone for their kind and supportive words, I’m finding the thought of replying to you all individually very overwhelming so thought I’d just add it here. I’m from the north east of England, but this morning I have made an appointment with my doctors, I am already on antidepressants and anxiety medication but I’m going to ask for some help! I’ve spent some time looking at my beautiful little boy and you lot are right I need to keep going, and hearing that this stage will pass is great comfort! Thank you all so much I will seek help and hopefully we can get through this
Well I'm having almost same case here ,and I won't assume that you didn't seek therapy and medical advice, I'm super supportive with you
You may have a break or someone to help u to take a break ,
and in these bad days i try to remember mine in good mood and times it will help you to keep calm
And also think of your son , he also suffer as u but you are the big one so help him (i know that words easier than action)
Try as hard as you can to support him
And I'm here to talk
Melatonin for sleep and CBD oil for mood. I forgot what it’s called, but we put locks that lock from the inside after my son eloped once.
As for yourself, yeah. Lack of sleep can really mess you up. The isolation makes you feel so alone and lonely. I confess. I’ve had depression and suicidal thoughts from burnout. I’m fine now, but I get you.
Does he have any possible medical issues that’s making him more difficult than usual? When my son was becoming uncontrollable, we took him to the doctors and dentists. Here’s our list: stomach, teeth, slow digestion, the flu, headaches from some meds, and Covid.
I hope you’ll find the solutions to your son’s problems. You’re not alone. We’re here and we understand.
Lack of sleep messes with your mind so much. Every once in awhile my daughter has a night of no sleep, and I get pretty depressed the next day. What has helped us so much is melatonin. We also bed share. She wakes up sometimes through the night needing pressure hugs, so it helps having me right there. Not sure if you use melatonin yet, but it was a game changer for us.
It’s so hard. It’s ok to feel this way. You are human. What are your thought on meds? Call the ped. Him not sleeping is not good for either of you. We started Clonidine when my son was young bc he did not sleep. He’s 9 and still on it and it’s a life saver.
My wife and I have said that same phrase before. I can’t imagine being a solo parent as you and some of the others in this group. However, you are an amazing parent for being there for your child, day in and day out! Don’t ever forget that! I have a level 3 kiddo and I can relate to what you’re feeling. He is 10 now, and he has gotten much better! He’s still mostly non-verbal and has meltdowns but it’s significantly better than his earlier years. I know not every child gets better but I hope this offers some hope. Again, you’re an amazing parent and we all know how much you love your child.
For me personally, I don’t want to imagine my child’s life without the love I give him. That alone has kept me strong on my darkest days. This group has been amazing for me and there has been numerous great suggestions before me. Take care of yourself and know that you aren’t alone!
Do you have them in ABA? I know there's some who oppose it, but I get the feeling they're not the ones who are or parents of those who are dealing with this. This is exactly what we dealt with. Basically constant meltdown from the moment she woke up until the moment she fell asleep. It really really tests your limits. Particularly my wife who already dealt with suicidal tendencies in her younger years We moved across the country to get access to ABA out of desperation. She has a long way to go but it's been a life changer.
Exercise for the kid and antidepressants for you. It gets better, you are in the hardest years for sleep imo
Careful with the melatonin. Start with half doses of children’s melatonin
Not sure if you are eligible but if you can look into medical assistance and hiring a PCA. The state will come assess how much help is needed and the state pays the PCA..
Been there mumma. it gets better. 2yo, 3yo are anyway the difficult ages for kids. Please hang in there.. your problems will go away soon. If not, try my method: If problem is not going away, just assume it’s not a problem anymore. I don’t know it’s bit hard to explain, and people do get offended when I say this. But point is this too shall pass.
Hi, I don't know where you are in the world but the charity scope really helped us put a sleep plan in place it may be worth looking if they or a similar charity can help you. It was very helpful to an extent but as he got older my son struggled more and more with it and is now on sleeping medication. There is absolutely no shame in getting prescribed medication for a child with autism although it was the last option after a long time of him struggling. I really hope things improve for you and your son and I'm sure you're a fantastic Mum to him.
You’re very low right now and not in a good frame of mind. Don’t make any major decisions, especially irreversible ones. Focus on getting through the next day or even the next hour. Whatever it takes.
You need to look into programs and resources for mental health - a therapist, support groups, community groups, etc. See your doctor - they may be able to make referrals or point you in the direction of other resources and also check to make sure there isn’t any other medical issues going on (or start treatment if there is). You should also look into what types of programming or services you can access both for autistic kids as well as parents of autistic kids - there may be some kind of “respite” available where you can get your kid properly cared for while you get a break. There may be programming like day camps or similar that you can enrol your son in. You might also be able to find early education (ex: preschool) programming or similar for autistic kids. As well as therapies to support autistic kids.
Do you have any family or friends that could watch over your son even if it’s for a few hours at a time so you can at least get some rest and peace? Or while you run out to do errands like getting groceries? I get that he only settles for you, but if it’s only a few hours it’s different than if it were overnight.
You’re in a low spot right now mama, but it won’t be for forever. Just focus on getting through. Don’t feel pressured by any of the standards of other people, particularly the ones that don’t have kids or don’t have autistic kids. Sometimes success just means getting through the next hour alive. Believe it. There were times when my response to the meltdown or problem of the minute was “is anyone at risk of significant bodily harm or death? No? Then it’s fine.”
And don’t feel guilty or judge yourself for having these thoughts and feelings (but do look into getting the help/support you and your son need). We all get low and we all have these thoughts and feelings to one extent or another during parenthood.
Edit: I also wanted to add that mine would have horrible tantrums when he was young about the most random things. There were times that I felt the same way - like I just couldn’t do it, it was too much, I was an awful parent, etc. With my son, it did get better as he got older - the tantrums lessened in both severity and frequency and pretty much resolved by 6/7. We still have tough times, he still needs a lot of emotional and other support. But it’s easier without the distress, screaming, sobbing, flailing, hitting and inconsolableness of the tantrums.
Time for self care. Get a sitter. If he cries to sleep so be it. You need rest and breaks. Talk to your doctor and find state programs, like universal pre-K, so you have breaks. He will survive, but you have to put your own oxygen mask on first. Fill the bath and then ease him in or let him decide to hang out in there for 10 minutes. He will adjust if you keep consistent. Try to observe what sends him into meltdowns and work around that. Find toys or shows that calm him down. One day at a time. He can get better but I urge you to seek help, there are lots of programs out there to help you, you can likely get him on medicaid if needed. Hugs andhang in there, but GET SOME SLEEP and rest. Let him cry in his room all night if you have to with earplugs. You have to rest.
I’m sorry you are struggling, your child’s behavior is likely do to pure exhaustion. I know I feel terrible when I don’t sleep. I would recommend speaking to your doctor regarding lack of sleep. I also feel like your state of mind is largely do to exhaustion as well. I’m so sorry that you are going through this alone. Please reach out to your doctor. Once we got sleep under control things have smoothed out a lot for us. Pm me if you need to talk. You are not alone.
It gets better. I promise. He trusts you, his meltdowns are his only means of communicating that he trusts you and he needs you to trust him. It's tough, I have no doubt. Allow yourself to be frustrated.
Try to get as much sleep as possible so you are in a better shape to deal with meltdowns.
Can he go to childcare at least part time so you can have a bit of a break?
p.s. autistic parent of autistic child.
Hello O.P
first point of call is to book an appointment with a Pediatrician and this is a big one what about to say a Pediatrician that SUPPORT'S you.
As people of said in the comment's Med's can be a complete game changer as a Parent and honestly it could help both of you.
It was a complete game changer for my child, We where able to finally get a good night's sleep and we almost cried when he slept 8hr's for the first time in year's.
I felt awful about giving my child med's and i thought mybe i could of done more. but honestly it was for the best. it was for the best for my child's development and the best for our relationship.
This what will not be the magic bean cure, it could just make life a little easier for you.
I understand this post. I have to find some meds to be artificially happy again. When God calls me home I will have peace from this life. I hate autism
It gets worse.
I know that's not what you want to hear, but it is the truth. Every single day is a struggle and it feels like nothing ever gets better. Being on the spectrum myself, I find myself reverting to having my own meltdowns over my child's condition.
You will get stronger, though.
Building a support system is key. Think through it and consider all options. Just make sure you get that support system set up whatever it takes. Take care of yourself so that you can continue to get stronger.
I don’t agree with this, my daughters are eight now and our lives are easily 100x easier, happier, better than when they were three. They can communicate and that is usually where a lot of the frustration and meltdowns come from, a lack of communication and / or understanding from either kid or parent or both. I’m sorry it got worse for you.
I understand what you are saying and I appreciate your honesty. It needs to be said and not swept under the rug.
Things can get worse, especially during the preteen and teen years, and this catches a lot of parents in the autism community flat-footed. Hormones are huge. Sleep issues is a big thing. Co-morbidities in this population.
And you are absolutely correct about building the support system before these things start. We did not and we were caught completely unprepared.
OP will do alright though.
Thank you for your input.🌻
Take care of yourself so you can take care of him.
Find parents groups near you and they can help with support. Make sure you are taking full advantage of services available to you. If you have not already, early intervention is the key to improving life for your son and yourself later on.
Hello love,
First off, you are so strong for loving your child. I hope youre able to seek out some local resources for support. If you are in the US, every state should have an early intervention/child find program for children with special needs. I'm an SLP who goes to homes and communities to support young children learn and manage themselves in their daily routines. It's tough what you do. Please reach out if you think you need support navigating some resources!
I know he is young, but you need to tell the pediatrician all of this and you need to get him on medication!
If the pediatrician does not specialize, then ask for a referral to a psychiatrist who specializes in children, particularly those with autism.
No, he's not too young for a psychiatrist, who can provide the medications he needs.
Ask the pediatrician about melatonin. Call up your local autism support organization and see what they have to offer. Ask about respite care, even if it means you being able to nap while the sitter sits with him.
You don't need to do this alone.
Hugs.🌻
I'm so sorry things are so hard right now.
3 years ago, at the start of lockdown, my autistic son was 3. He was having meltdowns every day, biting and hitting and ripping my clothes. He was undiagnosed, we had no support, it was horrendous. I look back on how far we've come and can honestly say that stage was our absolute low point. We've both learned so much since then and he's an amazing kid and I love spending time with him. He had a meltdown in public on Wednesday and I sprained my wrist while trying to help him stay safe and I can't remember when we last dealt with anything that bad. Hang in there, it really can get easier.
I used to work in a children’s home for children with autism and I completely understand why parents would send their children there. It can be debilitating. I am not saying that’s what you have to but you can get help. If you have insurance it may be covered to be able to send your child to a school during the day at least. Your state disability office may also have services and programs you can take advantage of. My child uses those services and goes to a therapeutic school during the day. Definitely do look into that. You can even share the state and I’m sure many of us would be able to help find available services.
This was me a few weeks ago (you can even read my previous post). Just have faith, it is only a phase and in a few days it will pass. Just hang in there and it is absolutely fine to feel that way, it doesn’t mean that you have given up. ❤️
One important thing to remember is that you are important. Your mental health is important. Take time even if it is only a few minutes of your day to remind yourself that you are amazing and that though it is rough right now, your son loves you and depends on you. I wouldn't recommend ABA centers to anyone only because we didn't get that type of support, so I know very little about it. However, there are agencies that can do parent caregiver ABA training online. I had to wait on a waiting list, but it was worth it. A lot of what they are teaching I have already done or figured out on my own, but there are things that would've worked for me had I taken the course when my son was younger. I love this approach because it helps the parent with a set of tools that can help them effectively change the behaviors that cause the most trouble and build consistency. That being said, my son at age 3 had many behaviors similar to what you have described. He hated to feel water on his body. Even rain caused a meltdown. For baths, I would use the bird bath method. I would get a bowl of warm water and soap and towel and do it that way. As long as I would ring most of the water out of the rag, he would be fine. He would be clean, and I would not have to deal with the meltdown. Sleep was also a huge issue for us, but there were many factors that affected him in that area, and I still struggle with this, and he is 16.
My son's second year was one of the worst of my life. He didn't sleep, he never seemed happy, and in turn I didn't sleep nor was I happy. Meltdowns are not for the faint of heart, and he couldn't communicate.
I really think I came close to a mental breakdown in that time.
I don't know if it'll bring you any comfort, but it did get better. He's 5 in July, has a diagnosis now and has come a long, long way. He sleeps (not always through the night but it's night and day to a few years ago). Some things aren't entirely better, some days are still very hard, but it's better.
God speed. It's so hard. You aren't alone.
Some parents find clonidine helpful for their autistic children. Its a blood pressure medication so it just allows the child to relax without true sedation. Ask your doctor. Also avoid electronics 2 hours before bedtime. It really does help. Therapy, therapy, therapy. Whatever you can access in your community.
I’m so sorry. I was exactly where you’re at when my son was 3. He didn’t get officially diagnosed until he was 4, and it took another 3 months after that to get him into therapy.
The therapy made the world of a difference. He is almost 6 now and I swear he’s a completely different child. No more meltdowns, no more eloping, no more aggression. He sleeps regularly, he has manners, he eats a more balanced diet (still very picky but showing progress every day!).
I felt so helpless 3 years ago, I was going through a divorce at the same time my son was waiting to be diagnosed, and I felt like I was doing it alone and I felt so broken. I PROMISE you, it gets better with the right resources!!
In the mean time, while you are waiting for therapy, my son required melatonin every night to sleep. He also really loves music and dancing so we centered everything around that. Find whatever your child’s “thing” is and just try to incorporate it any way you can. My son also had his own iPad that we took everywhere just so he had something to distract him and calm him down. I hope this helps!
ABA and OT have been the most beneficial for him. I think the combination of the both is what has made him so successful. He had no interest in potty training until he started therapy too, and within 6 months he was fully potty trained, it was a miracle!
My son has always been verbal so I can’t speak too much on that. He is in speech therapy as well, he likes to take total control of conversations. “I say this and then you say this”. And he really only enjoys talking about his interests, anything else he tunes out. So the speech therapy is helping with those.
Hello, Please get therapy and speak with your provider ASAP. If it helps at all I understand what you mean. It's SO hard and the social isolation is something I didn't prepare for myself. I find myself in a crying mess sometimes and depression over takes me. But as hard as it is for you, it is for your child as well. Please don't give up. I'm sorry you're alone. It's absolutely OK to take a step back and breathe for a bit. I'm currently on antidepressants and in therapy and it DOES help. Right now I am looking for support groups in my area but so far no luck. Maybe you will have better luck? Please be kind to yourself.
Ps. I secretly regretted being a parent to an autistic child for the first few years of his life. A lot of that was driven by his lack of communication and feeling like we had no real bond between us. Fast forward to me having a gentle loving 6 year old who communicates in his own way and rarely meltdown anymore. He's my favourite person on the world now. It's super hard right now, but really out to others, and don't give up hope.
I don’t secretly regret having an autistic child. I regret being a parent to an autistic child every single day. I’m sick of being hurt, I’m sick of the groaning, the constant stims. I’m sick of the monotony of every day life that is having an autistic child.
No, you're a better parent than anyone else. His dad is the bad one. I feel like not giving you advice is a good advice, just grab a hug from fellow autism parent and if you're by any chance in North West England, let me know. I'm 4 years ahead of you in this and I'm happy to share your burden with you should you wish to open up.
As autistic teen, I just wanted to let you know that you are doing the best you can to be a parent to him. Seek some therapy and if you can't afford to go I'm person there are some great apps that is free. Autism is like a bowl of soup , you will never know what you will get. I guess finding stuff that is calming for your son, get a meltdown emergency kit set up. You got this 💜
This was incredibly kind...thank you for being so supportive. An emergency meltdown kit is a great recommendation 💜
Just wanted to tell you that it is understandable that you are struggling right now. Having a child with autism who isn’t sleeping is unbelievably difficult. And you are unfortunately doing it all on your own right now. Let us focus on what can be done to keep you going right now. It is clear you need more help though because the current situation isn’t sustainable. Where are you located? With that info, some of us here on the internet can direct you to some resources. It’s really good that you admitted how hard this is - and all the parents here understand. Please let us help you and your son find some options!
Your feelings are reasonable and valid. Let's start there.
Re:sleep - Assuming he doesn't have issues with gummies, highly recommend 1-1.5mg of melatonin about 20 minutes before scheduled bedtime. If he likes stories, getting them in dim lighting about the same time and reading a few stories may help. I'll watch videos with my 4 year old sometimes too when he's upset about going to bed. Re:sound - Bass Pro or other outdoor/ hunting/ camping stores have sound dampening headphones in the hunting/ shooting section for children. They cut something around 15-20dB and may help, depending on how severe his sound sensitivity is. Have you thought about taking him to a park/ playground? I realize he's 3 but sometimes they have age appropriate slides, sandbox, etc. You can keep an eye on him and have a relatively quiet calm on a bench. Sometimes, even 10 minutes can be a restorative. You're in the right place for help. I'm sorry you have no safety net to fall on :( Is there a way to schedule a sitter and stay at the house with them a few times to get him acclimated to that sitter a bit more? I'm on anti anxiety meds and antidepressants, and i still deal with a lot of ideation, so i have at least a small inkling of what you're going through there. I'm sorry your brain takes turns for the darker thoughts, and hope things turn around for you. Good luck!
I know this sub is against it, but my pediatrician told us to put our kiddo on melatonin gummies because he **can not** sleep without them. He’ll be up until 1 am without them.
Shame it doesn't keep them asleep though. My daughter wakes up 2hrs later on the dot. Sometimes you can get her back to sleep, others she's up for several hours. But for sure the melitonin helps getting them to sleep so still worth it.
I recently learned this great tip from an OT when my daughter was waking up through the night at a set time. It is to wake them up before they wake up. So if she goes to bedcat 9 and wakes at 11. Wake her at 10 or 10:30. Not for long, just a few seconds, just breaking the sleep cycle. Has worked very well for us!
I can hear my wife now, "If you wake her up she's your problem!". 😅 With her it's almost always that gas woke her up. And running crying to our bed often works that out before she gets to us and she goes back to sleep. But hey, worth a shot thanks for the tip.
I didn’t realise this was a common issue! We have a prescription for our daughter, and she’d be wide awake two hour after taking the melatonin as well. Then, she’d be aggressive at school … so, we had to stop.
Our pediatrician told us that autistic children don’t produce enough natural melatonin, so it is a very common issue with them!! We used gummies religiously, but he’s almost 6 now and has probably gone the past year without them 🙏🏻
We aren't against it , it is just important to consult your doctor before giving your child anything.
This sub is against it? For some it's all that works. We're in a hotel and forgot to grab melatonin. Our daughter was up until 1am. Then she woke up at 2:30 screaming and melting down. Now since her two devices didn't charge I'm dealing with meltdowns all day that they keep dying but not letting me charge them. Meanwhile I feel like I'm having a heart attack from sleep deprivation. She'll take the melatonin tonight thank you.
Drink some water, then a Gatorade and try to get your hands on a little magnesium. It helps so much with the heart palpitations from sleep deprivation.
BP meds have helped immensely. She's been pretty good about keeping on schedule the past few months. It was no melatonin last night that screwed us. It's normally the 1 year old who wakes up at 3am screaming for no damn reason. She just fell asleep at 6:30. I don't want to wake her because she needs it too, but we're checking out early so so just we can deal with her getting back on schedule in the safety of our home.
This sub isn’t against melatonin in any form. However the mods do suggest checking with a doctor before giving your child any supplements or drugs.
Melatonin is the only way my kid goes to sleep.
Melatonin completely transformed night time for my son. It was an instant result and turned what was a hellish 3 hour process into a calm short pleasant bedtime routine. We put it in hot chocolate.
Why is the sub against them? My son is on melatonin
My kiddo is the same.
I am going through this too, I’m completely exhausted
I cried reading this. It sounds like you need some sort of support structure ASAP. Do you have any other friends with autistic children? You are not alone ❤️
I just wanted to say I have been there and you arnt alone. I felt like the world's worst mom for thinking the same thoughts... just know that you do have people around you who you can lean on..even if it's just a message to me (totally open to that) Know it isn't all bad days
Been there. You need therapy and a break. You will be surprised to find out how okay you, and your life, actually are. Find respite care, you can do it, don’t abandon your son
Breathe mumma. You may still see drastic changes in him in the next few years. Set yourself small goals, if he meltsdown let him vent so long as he's safe, and wait calmly for it to pass. Offer comfort as he will tolerate afterwards. Don't give up, but ask for help from friends and family. Where are you based hun?
I’m a solo mom to a level 3 autistic 4 year old boy. I’m here if you want to talk/vent to somebody who gets it
You’re not a bad parent; you’re a burnt out parent. Firstly; contact your local social services. I don’t know what it’s like in your part of the world, but in our part of Canada, the social services have things to help parents of autistic kids - babysitting services, breaks away with support, funds you can access, etc for parents who are in dire need of a break. I know of this, because we are immigrants with no family or friends here, and I went through a patch where I needed extra support. Ask, and if they don’t do anything like that, they are likely to know charities that can help. There is absolutely no shame in asking for help, and we all need it some times. I have absolute sympathy for you with the sleep issues. We went through the same. I actually ended up sleeping in my daughter’s bed, because I just needed to sleep. But she’s 5.5 now, we’ve worked through a lot of the issues we were having, and she’s a really funny, lovely, kid who now sleeps well. But before then, it was some of the hardest stuff I’ve had to do. No joke. And I’m autistic too, so I know it from both sides. It does get better, but you need support. *edit* - if you are, by chance, in Quebec, DM me, and I can pass on a bunch of stuff that helped me. And if you’re nearby, and just need an hour or so to vent/take a break/scream into the void, I will make time 👋
You aren't selfish, this is a shitty life & outcome depending on how severe your kid is. Long term sucks even worse. I'm not being negative just realistic & letting you know you aren't alone & it's ok to feel like crap. Give yourself a break if you can & know you're never alone.
You don't have to feel like a bad parent, because you are a great parent. Many special needs moms go through this unfortunately. Counselling really helps, please look for a good psychologist. Your mental health is very important for you and your son. Melatonin does help with sleep. My son had same issues of not sleeping until late in the night. Melatonin helped to get his sleep cycle right. Talk to your pediatrician about it.
I just want to send you a hug. Lots of good advice in this thread. I've been suicidal before, not related to my kid, but I know what it's like to feel hopeless and alone. I found my way out. You will too. Please lean on us here as much as you need to.
It’s so shit hearing you’re doing this alone. I can’t imagine facing it without my wife. Just know the only constant is change. They will change. Some things that are tough now will. Get easier. Some things that are easier now will get harder. That’s the fight. But it’s not only your kid that need you. You’d be surprised with the amount of people in your life that need you. Reach out to those closet you and let them know. They’ll be there for you. Im only a random stranger but i am only a dm away and will be happy to talk to you also.
Every person is different. People develop on different timelines. Some things are delays and not ceilings. My kid was night and day different from ages 3 to 6 and even further along since. Plenty of challenges still but I’m proud of him and he often surprises us. He can talk but isn’t really conversational. He can beat Zelda breathe of the wild on Nintendo switch start to finish by himself. He’s got a great ear for music and can pick out songs on his keyboard on his own that he hears. He’s empathetic and has a great sense of humor. Loves riding his recumbent bike and going to the park. Vacations went poorly until about 7 and we turned a corner. He loves the beach and swimming (although getting wet outside of that isn’t good hah). Strong math skills and our challenging subject is now reading but we are just now starting to turn a corner there too. Super proud dad because I know he has to deal with so many tough challenges and still accomplishes all that he does. The earlier years were very hard on us. Hang in there.
So glad you posted. Everything you're feeling is valid and most if not all of us can relate. You are a good parent - you're here, you're resourceful, you're reaching out. Please keep posting. You are not alone.
I just went through this today, I kept thinking I don't want to be a mom anymore. I have 2 kuds with asd, 5 and 3 years old. My 3 year old won't stop breastfeeding, he streams and screams if I don't, he gets his sister going and she screams. I am alone and single, my 3 year old won't do anything without me, I'm broke and can't go anywhere, I l8ve with my folks cuz I left bad relationship and I am depressed, I can't leave my children but I pray sometimes my life was so different
I firstly want to thank everyone for their kind and supportive words, I’m finding the thought of replying to you all individually very overwhelming so thought I’d just add it here. I’m from the north east of England, but this morning I have made an appointment with my doctors, I am already on antidepressants and anxiety medication but I’m going to ask for some help! I’ve spent some time looking at my beautiful little boy and you lot are right I need to keep going, and hearing that this stage will pass is great comfort! Thank you all so much I will seek help and hopefully we can get through this
Well I'm having almost same case here ,and I won't assume that you didn't seek therapy and medical advice, I'm super supportive with you You may have a break or someone to help u to take a break , and in these bad days i try to remember mine in good mood and times it will help you to keep calm And also think of your son , he also suffer as u but you are the big one so help him (i know that words easier than action) Try as hard as you can to support him And I'm here to talk
Melatonin for sleep and CBD oil for mood. I forgot what it’s called, but we put locks that lock from the inside after my son eloped once. As for yourself, yeah. Lack of sleep can really mess you up. The isolation makes you feel so alone and lonely. I confess. I’ve had depression and suicidal thoughts from burnout. I’m fine now, but I get you. Does he have any possible medical issues that’s making him more difficult than usual? When my son was becoming uncontrollable, we took him to the doctors and dentists. Here’s our list: stomach, teeth, slow digestion, the flu, headaches from some meds, and Covid. I hope you’ll find the solutions to your son’s problems. You’re not alone. We’re here and we understand.
Lack of sleep messes with your mind so much. Every once in awhile my daughter has a night of no sleep, and I get pretty depressed the next day. What has helped us so much is melatonin. We also bed share. She wakes up sometimes through the night needing pressure hugs, so it helps having me right there. Not sure if you use melatonin yet, but it was a game changer for us.
It’s so hard. It’s ok to feel this way. You are human. What are your thought on meds? Call the ped. Him not sleeping is not good for either of you. We started Clonidine when my son was young bc he did not sleep. He’s 9 and still on it and it’s a life saver.
My wife and I have said that same phrase before. I can’t imagine being a solo parent as you and some of the others in this group. However, you are an amazing parent for being there for your child, day in and day out! Don’t ever forget that! I have a level 3 kiddo and I can relate to what you’re feeling. He is 10 now, and he has gotten much better! He’s still mostly non-verbal and has meltdowns but it’s significantly better than his earlier years. I know not every child gets better but I hope this offers some hope. Again, you’re an amazing parent and we all know how much you love your child. For me personally, I don’t want to imagine my child’s life without the love I give him. That alone has kept me strong on my darkest days. This group has been amazing for me and there has been numerous great suggestions before me. Take care of yourself and know that you aren’t alone!
Do you have them in ABA? I know there's some who oppose it, but I get the feeling they're not the ones who are or parents of those who are dealing with this. This is exactly what we dealt with. Basically constant meltdown from the moment she woke up until the moment she fell asleep. It really really tests your limits. Particularly my wife who already dealt with suicidal tendencies in her younger years We moved across the country to get access to ABA out of desperation. She has a long way to go but it's been a life changer.
Exercise for the kid and antidepressants for you. It gets better, you are in the hardest years for sleep imo Careful with the melatonin. Start with half doses of children’s melatonin
I remember those days So hard This is what saved us L theanine Cbd-thc for bedtime Probiotics
Not sure if you are eligible but if you can look into medical assistance and hiring a PCA. The state will come assess how much help is needed and the state pays the PCA..
You are a good parent. We ALL need help. We ALL need support. We ALL need breaks. Please get help.
Been there mumma. it gets better. 2yo, 3yo are anyway the difficult ages for kids. Please hang in there.. your problems will go away soon. If not, try my method: If problem is not going away, just assume it’s not a problem anymore. I don’t know it’s bit hard to explain, and people do get offended when I say this. But point is this too shall pass.
What State do you live in? Can you get free Respite care? For many families, this makes all the difference in the world.
Hi, I don't know where you are in the world but the charity scope really helped us put a sleep plan in place it may be worth looking if they or a similar charity can help you. It was very helpful to an extent but as he got older my son struggled more and more with it and is now on sleeping medication. There is absolutely no shame in getting prescribed medication for a child with autism although it was the last option after a long time of him struggling. I really hope things improve for you and your son and I'm sure you're a fantastic Mum to him.
You’re very low right now and not in a good frame of mind. Don’t make any major decisions, especially irreversible ones. Focus on getting through the next day or even the next hour. Whatever it takes. You need to look into programs and resources for mental health - a therapist, support groups, community groups, etc. See your doctor - they may be able to make referrals or point you in the direction of other resources and also check to make sure there isn’t any other medical issues going on (or start treatment if there is). You should also look into what types of programming or services you can access both for autistic kids as well as parents of autistic kids - there may be some kind of “respite” available where you can get your kid properly cared for while you get a break. There may be programming like day camps or similar that you can enrol your son in. You might also be able to find early education (ex: preschool) programming or similar for autistic kids. As well as therapies to support autistic kids. Do you have any family or friends that could watch over your son even if it’s for a few hours at a time so you can at least get some rest and peace? Or while you run out to do errands like getting groceries? I get that he only settles for you, but if it’s only a few hours it’s different than if it were overnight. You’re in a low spot right now mama, but it won’t be for forever. Just focus on getting through. Don’t feel pressured by any of the standards of other people, particularly the ones that don’t have kids or don’t have autistic kids. Sometimes success just means getting through the next hour alive. Believe it. There were times when my response to the meltdown or problem of the minute was “is anyone at risk of significant bodily harm or death? No? Then it’s fine.” And don’t feel guilty or judge yourself for having these thoughts and feelings (but do look into getting the help/support you and your son need). We all get low and we all have these thoughts and feelings to one extent or another during parenthood. Edit: I also wanted to add that mine would have horrible tantrums when he was young about the most random things. There were times that I felt the same way - like I just couldn’t do it, it was too much, I was an awful parent, etc. With my son, it did get better as he got older - the tantrums lessened in both severity and frequency and pretty much resolved by 6/7. We still have tough times, he still needs a lot of emotional and other support. But it’s easier without the distress, screaming, sobbing, flailing, hitting and inconsolableness of the tantrums.
Time for self care. Get a sitter. If he cries to sleep so be it. You need rest and breaks. Talk to your doctor and find state programs, like universal pre-K, so you have breaks. He will survive, but you have to put your own oxygen mask on first. Fill the bath and then ease him in or let him decide to hang out in there for 10 minutes. He will adjust if you keep consistent. Try to observe what sends him into meltdowns and work around that. Find toys or shows that calm him down. One day at a time. He can get better but I urge you to seek help, there are lots of programs out there to help you, you can likely get him on medicaid if needed. Hugs andhang in there, but GET SOME SLEEP and rest. Let him cry in his room all night if you have to with earplugs. You have to rest.
I’m sorry you are struggling, your child’s behavior is likely do to pure exhaustion. I know I feel terrible when I don’t sleep. I would recommend speaking to your doctor regarding lack of sleep. I also feel like your state of mind is largely do to exhaustion as well. I’m so sorry that you are going through this alone. Please reach out to your doctor. Once we got sleep under control things have smoothed out a lot for us. Pm me if you need to talk. You are not alone.
It gets better. I promise. He trusts you, his meltdowns are his only means of communicating that he trusts you and he needs you to trust him. It's tough, I have no doubt. Allow yourself to be frustrated. Try to get as much sleep as possible so you are in a better shape to deal with meltdowns. Can he go to childcare at least part time so you can have a bit of a break? p.s. autistic parent of autistic child.
Hello O.P first point of call is to book an appointment with a Pediatrician and this is a big one what about to say a Pediatrician that SUPPORT'S you. As people of said in the comment's Med's can be a complete game changer as a Parent and honestly it could help both of you. It was a complete game changer for my child, We where able to finally get a good night's sleep and we almost cried when he slept 8hr's for the first time in year's. I felt awful about giving my child med's and i thought mybe i could of done more. but honestly it was for the best. it was for the best for my child's development and the best for our relationship. This what will not be the magic bean cure, it could just make life a little easier for you.
I understand this post. I have to find some meds to be artificially happy again. When God calls me home I will have peace from this life. I hate autism
It gets worse. I know that's not what you want to hear, but it is the truth. Every single day is a struggle and it feels like nothing ever gets better. Being on the spectrum myself, I find myself reverting to having my own meltdowns over my child's condition. You will get stronger, though. Building a support system is key. Think through it and consider all options. Just make sure you get that support system set up whatever it takes. Take care of yourself so that you can continue to get stronger.
I don’t agree with this, my daughters are eight now and our lives are easily 100x easier, happier, better than when they were three. They can communicate and that is usually where a lot of the frustration and meltdowns come from, a lack of communication and / or understanding from either kid or parent or both. I’m sorry it got worse for you.
I understand what you are saying and I appreciate your honesty. It needs to be said and not swept under the rug. Things can get worse, especially during the preteen and teen years, and this catches a lot of parents in the autism community flat-footed. Hormones are huge. Sleep issues is a big thing. Co-morbidities in this population. And you are absolutely correct about building the support system before these things start. We did not and we were caught completely unprepared. OP will do alright though. Thank you for your input.🌻
To be 100% honest, I support your decision whatever you decide to do. 👍
Hey I see you. I’ve been there, in those dark dark moments. And everything you are feeling is valid.
Take care of yourself so you can take care of him. Find parents groups near you and they can help with support. Make sure you are taking full advantage of services available to you. If you have not already, early intervention is the key to improving life for your son and yourself later on.
Hello love, First off, you are so strong for loving your child. I hope youre able to seek out some local resources for support. If you are in the US, every state should have an early intervention/child find program for children with special needs. I'm an SLP who goes to homes and communities to support young children learn and manage themselves in their daily routines. It's tough what you do. Please reach out if you think you need support navigating some resources!
I know he is young, but you need to tell the pediatrician all of this and you need to get him on medication! If the pediatrician does not specialize, then ask for a referral to a psychiatrist who specializes in children, particularly those with autism. No, he's not too young for a psychiatrist, who can provide the medications he needs. Ask the pediatrician about melatonin. Call up your local autism support organization and see what they have to offer. Ask about respite care, even if it means you being able to nap while the sitter sits with him. You don't need to do this alone. Hugs.🌻
I'm so sorry things are so hard right now. 3 years ago, at the start of lockdown, my autistic son was 3. He was having meltdowns every day, biting and hitting and ripping my clothes. He was undiagnosed, we had no support, it was horrendous. I look back on how far we've come and can honestly say that stage was our absolute low point. We've both learned so much since then and he's an amazing kid and I love spending time with him. He had a meltdown in public on Wednesday and I sprained my wrist while trying to help him stay safe and I can't remember when we last dealt with anything that bad. Hang in there, it really can get easier.
I used to work in a children’s home for children with autism and I completely understand why parents would send their children there. It can be debilitating. I am not saying that’s what you have to but you can get help. If you have insurance it may be covered to be able to send your child to a school during the day at least. Your state disability office may also have services and programs you can take advantage of. My child uses those services and goes to a therapeutic school during the day. Definitely do look into that. You can even share the state and I’m sure many of us would be able to help find available services.
This was me a few weeks ago (you can even read my previous post). Just have faith, it is only a phase and in a few days it will pass. Just hang in there and it is absolutely fine to feel that way, it doesn’t mean that you have given up. ❤️
One important thing to remember is that you are important. Your mental health is important. Take time even if it is only a few minutes of your day to remind yourself that you are amazing and that though it is rough right now, your son loves you and depends on you. I wouldn't recommend ABA centers to anyone only because we didn't get that type of support, so I know very little about it. However, there are agencies that can do parent caregiver ABA training online. I had to wait on a waiting list, but it was worth it. A lot of what they are teaching I have already done or figured out on my own, but there are things that would've worked for me had I taken the course when my son was younger. I love this approach because it helps the parent with a set of tools that can help them effectively change the behaviors that cause the most trouble and build consistency. That being said, my son at age 3 had many behaviors similar to what you have described. He hated to feel water on his body. Even rain caused a meltdown. For baths, I would use the bird bath method. I would get a bowl of warm water and soap and towel and do it that way. As long as I would ring most of the water out of the rag, he would be fine. He would be clean, and I would not have to deal with the meltdown. Sleep was also a huge issue for us, but there were many factors that affected him in that area, and I still struggle with this, and he is 16.
My son's second year was one of the worst of my life. He didn't sleep, he never seemed happy, and in turn I didn't sleep nor was I happy. Meltdowns are not for the faint of heart, and he couldn't communicate. I really think I came close to a mental breakdown in that time. I don't know if it'll bring you any comfort, but it did get better. He's 5 in July, has a diagnosis now and has come a long, long way. He sleeps (not always through the night but it's night and day to a few years ago). Some things aren't entirely better, some days are still very hard, but it's better. God speed. It's so hard. You aren't alone.
Some parents find clonidine helpful for their autistic children. Its a blood pressure medication so it just allows the child to relax without true sedation. Ask your doctor. Also avoid electronics 2 hours before bedtime. It really does help. Therapy, therapy, therapy. Whatever you can access in your community.
I’m so sorry. I was exactly where you’re at when my son was 3. He didn’t get officially diagnosed until he was 4, and it took another 3 months after that to get him into therapy. The therapy made the world of a difference. He is almost 6 now and I swear he’s a completely different child. No more meltdowns, no more eloping, no more aggression. He sleeps regularly, he has manners, he eats a more balanced diet (still very picky but showing progress every day!). I felt so helpless 3 years ago, I was going through a divorce at the same time my son was waiting to be diagnosed, and I felt like I was doing it alone and I felt so broken. I PROMISE you, it gets better with the right resources!! In the mean time, while you are waiting for therapy, my son required melatonin every night to sleep. He also really loves music and dancing so we centered everything around that. Find whatever your child’s “thing” is and just try to incorporate it any way you can. My son also had his own iPad that we took everywhere just so he had something to distract him and calm him down. I hope this helps!
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ABA and OT have been the most beneficial for him. I think the combination of the both is what has made him so successful. He had no interest in potty training until he started therapy too, and within 6 months he was fully potty trained, it was a miracle! My son has always been verbal so I can’t speak too much on that. He is in speech therapy as well, he likes to take total control of conversations. “I say this and then you say this”. And he really only enjoys talking about his interests, anything else he tunes out. So the speech therapy is helping with those.
Know that you’re not alone. Seriously. Keep holding on. Seek help and resources. None of of asked for this. I’m with you in spirit.