Does it get better?

Yes I'm sorry if anything I said the previous day has upset you. I really do hope that you feel welcome here and continue to share your story and feel supported. 

Thank you so much! I really really appreciate that. It’s good to know I’m not alone.

Your ideas didn’t make me feel bad. I really appreciate them. Usually my son wants space during a meltdown, so unless he wants to be held, it’s more a matter of riding it out. But I still really appreciate the ideas and am going to try some of the ones I haven’t yet. I think he’d like a lot of them when he’s not in the middle of a meltdown.

I’m so sorry you went through that with your first! And to have his own doctor tell you that — how awful! I hope now you know that nothing she said was true, and nothing you did was to blame. It sounds like you’re amazing and your kids are so blessed to have you. I appreciate the kind words and empathy.

Thank you so much! I really appreciate that. He usually just wants space during a meltdown. I’ve tried sensory toys, but he’s not interested in them during meltdowns. So, unless he wants to be held, I just sort of have to ride it out, and do trial and error to figure out what’s wrong. The tantrums have definitely been shorter in duration, but the frequency is still often. I’m hoping that his communication will increase so he will be able to tell us what he wants/needs. I feel so bad for him — I can’t imagine how frustrating that would be.

I hope you get some answers for your daughter soon. The not knowing is so hard. And scrubbing poop off the carpet on the regular would be enough to break anyone.

The fact that you are taking the time to come onto a forum and be open about your feelings and worries shows that your a good mother.

When my eldest child who’s 11 now was first diagnosed I remember speaking to my doctor in tears telling her life shouldn’t be this hard. I was embarrassed, blamed for years that my parenting wasnt correct and that’s why my child was the way he was. It was traumatic. We all have moments when we feel like we are going round in circles but your trying your best and that all you can do. 

Both of my children are on the spectrum and It would be impossible to get to a place where meltdowns and parenting in general does not overwhelm or feel like we are getting no where. 

I was giving you some ideas that may help your child during or after a melt down such as the dark tent and also some activities that can be used as distraction or to help prevent sensory overload. I wasn’t trying to make you feel bad by giving you ideas. People told me these things to try and I see it helping my child that’s why I wrote them all down like that. 

I'm really sorry that you have been met with what can only be described as hostility on this post. Please know that not everyone on here is like that, I have read lots of supportive comments to vulnerable parents. I haven't been able to read your original post, but please don't let others put you off posting here if you need to vent or if you need advice. Everyone on here should remember that everyone's experiences are different, and things can be misread and misinterpreted. Noone comes here to be berated, we come here for support. 

Just remember you are human and your feelings are valid also. Is there any particular activities he likes to do which would help distract him from a meltdown ?? Any sort of sensory toys which would gage his attention ?? 

His ABA is child-led and play based. His therapist is an angel who has a masters in child development and he adores her. He loves going and has fun there — lots of play centered around his interests and lots of peer interaction. Right now they/we are mostly focused on helping him communicate because that’s where most of his frustration is stemming from. Also, helping him process his emotions and senses in a healthy way so he isn’t a risk to himself and others.

Thank you Giraffe that’s very kind of you. 

Okay, let's back up a little. We took the time to read your post and reply to it. I know you are looking for some comfort, and you're uncertain about your son and his development, and I feel for you. That's scary. You don't know if he'll ever progress beyond where he is.

But we are also concerned about if you're looking at things through your son's perspective, and it's because we are on the autistic spectrum, and we know how overwhelmed your son is feeling, having been through that life stage ourselves. 

You say you're doing everything you can, and getting angry and defensive and upset that you're not getting comfort or empathy, but we have issues showing that sometimes. I'm trying my best through typing to show support, but I don't think I did that well, because you're upset at what I've said. But I hope the best for your family anyways.

I want nothing more than for him to be happy and comfortable. That’s literally what I’m striving to do every second of every day. To me, if he was happy and comfortable, that WOULD be progress.

“And you only want comfort for yourself, you see things in terms of how your son is negatively impacting you, and you disregard you're son's perception about how things might be negatively impacting him.” 

I think about how things impact him ALL the time. Gosh! This was one post about one things I’m feeling (along with the other million things I think about him daily). I was looking for some comfort and empathy because I was in a dark place. It didn’t mean I wasn’t still thinking about my son 99% of the time.

Based on the post you've written, you do have expectations for him, which is why you said that he takes one step forward and two steps back. That's based on expecting him to keep going forwards, but he's not progressing fast enough like you expected him to.

And you only want comfort for yourself, you see things in terms of how your son is negatively impacting you, and you disregard you're son's perception about how things might be negatively impacting him. I mean you're not expected to be a perfect parent, so stop putting yourself down and saying "sorry I'm a [insert something negative] mother." All you can do is try to empathise with his view of the world, and try to adjust things so he's comfortable with the family, and the family is comfortable with him. 

I don’t really want to get into a debate about ABA or other things with you. But I’m not trying to mask his behaviors, change who he is, or cure his autism. I’m sorry you had a bad experience with ABA, but I do know it has changed significantly since then.

Posting this was incredibly vulnerable for me and I’ve definitely learned my lesson that online is not the place to be vulnerable. I was hoping for some support, but was mostly met with judgement. And thanks to your comment I will never ever do it again. You made me feel like a terrible mother and person (which it sounds like you think I am anyway). I beat myself up everyday wondering if I’m a good enough mom for my son, if every single decision I’m making for him is the right one. Yes, this post was about me and my feelings — but the most present feelings are trying to do the best thing for him, make him feel comfortable, included, loved, nurtured, at peace, accepted. Everything I do is for him and my other two children. Even then, I never feel like I’m good enough. Thank you for adding to that feeling.

I'm really sorry but it sounds like you do have expectations for him. You talk a lot about him 'progressing' in terms of his development and perhaps it would help you and him if him being happier and more comfortable was your focus, rather than 'progression'. Not knowing what the future holds is so daunting, I know, I do understand that, and you are allowed your feelings and to be vulnerable.

What kind of ABA is your son having?

I appreciate all these wonderful suggestions. Thank you. The last thing you said was very helpful — thank you. To be clear — I am constantly thinking about how I/my family/his environment impacts him. This post was me being very vulnerable about other thoughts I sometimes have when things are especially difficult. Everything I do is for my son (and my other kids). Not that I feel like I’m a good enough mother for him because, trust me, I don’t.

I don’t have any expectations for him. The uncertainty is hard for me, but I appreciate the words you said in your first paragraph — that’s very helpful.

Thank you for the kind words. I’m sorry you also have hard days with your daughter. The waiting for a diagnosis is also so hard. Thank you for the kindness and empathy.

Can I just say you sound a fabulous parent?

I really don’t like to judge others situations but your post just goes on about how your autistic child impacts your life. Try thinking how you, your partner and other children and life in general impacts your autistic child?

Have you tried a pop up dark tent? A weighted blanket? A battery operated fibre optic light? Does your child like a massage? Buy a therapressure brush really good for sensory seeking children. Do you have an outside space? Get a bubble machine really cheap from Argos. I’d recommend the gazillions bubbles though. My son can spend ages spinning in circles watching the bubble go up in the sky. Does your child like trampolines? An autistic friendly trampoline session maybe an idea? What about water time? Your child could wash bubbles or shaving foam off of toy cars? Does your child like play doh? Lego duplo? Sand? Dried pasta and rice? A bag of soil in the garden let your child dig or hide his cars or fill up diggers? Be prepared to wash and dry everything clean afterwards or have water in a bucket handy incase your child decides he wants his toy clean. What’s your childs favourite toy, book? I actually got balloons and blow two up at the weekend and just tapping the balloons in the air and repeatedly doing it over and over again my son was laughing at me jumping around silly trying to stop the balloons going on the floor. He was joining in too. Or even tap the balloon over to your son and see his reaction. 

We read tiger who came to tea every night since Christmas 2020 and now we are reading a  Peppa pig fire engine book too. It’s small steps. Does he have a device? A kids kindle is a great device or an iPad although these are a bit more pricey. Does he like listening to music related to a cartoons or movie? My son loves the monster inc theme song and some of toys story songs a a low sound at bed time. Have you tried a choice board with pecs symbols? A now and next board? I would do these activities one on one or just sit beside your child as he may not want you to join in or watch from a distance. My child now manages to let me play with one car that he will pick and it’s a small step but to me it means the world as last month he would never have let me join in as cars are his special interests.

I’m saying these ideas as these are things I do with my son who is nearly 4 years old. It seems a lot of ideas and He responds so well some days and others maybe only engage for 5 mins and some days not. 

I try to do gentle parenting with my son and you know it works a treat I try to be patient and see his behaviour is a reaction to a challenging environment.  

Yes you are in the dark about your child’s future but we all are and it’s frustrating at times but You will drive yourself mad always thinking about the what ifs.