Really struggling with my non verbal autistic son, please tell me it gets better!?

[Mummaoftwo29]

I’m so so tired, feeling alone, fed up, my heart feels so sad and I’m so angry and frustrated I could scream until my lungs give out. I’ve spent the last couple of hours googling to try and find some advice and help as I don’t know what to do anymore. I have no friends who understand so if you are taking the time to read this, I really appreciate it.

My nearly 8 year old son has autism and is mostly non-verbal. He can say a few short sentences when prompted to and will repeat back words parrot style, but the majority of the time he only communicates by saying just a word. I knew when he was a baby that he was most likely autistic and had it diagnosed a few years later. He was a laid back toddler, happy and always smiling and melt downs were near non-existent and you could really see his personality shine. These days I feel like I don’t even see his personality anymore and it’s all overshadowed by everything else and all the struggles we face every day. He was is nursery and mainstream school with a 1 to 1 who was amazing and they got on so well and he loved going to school… but as he turned 7 and the other children and the class went from playing to learning he started to struggle and not enjoy it anymore. With that and the schools decision to change his 1 to 1, he started having melt downs in school, tears and not wanting to participate in anything. It started to become a fight to get him to school in the morning, then the new behaviours at home started. He started smearing, all over his bedroom walls and on himself. I immediately stoped him from going to school and the behaviours stoped. He hasn’t been in school for over 8 months now. We are currently in the process of moving house so he will be attending a specialised school when we move but who knows how much longer that will take for them to find him a place.

Every day is a struggle, all he wants to do is go on the iPad all day or look at the pictures on my phone. I try to restrict usage and try to engage him with other things and activities but he just constantly repeats “iPad” over and over and over again and then cry and melt down when I tell him there’s no more time for that today. It just never stops. As he’s gotten older he’s so much more defiant and when told not to do something, if it’s dangerous etc he’ll just give me that defiant look and then do it again.

I co-parent with his dad and his dad has him one or two nights a week. I have noticed when I get him back his behaviour is always more challenging but his dad says nothing out of the ordinary has happened. I normally had no issue with bathing him and washing his hair, and he enjoy’d bath time but recently that has completely changed and I don’t know why. As soon as I try to wash his hair he becomes panicky and extremely distressed and starts screaming and crying. When I try to ask him what’s wrong or what’s happened he just looks at me and cry’s. It’s so frustrating and heartbreaking knowing he can’t speak and tell me what’s on his mind. I’m his mum, I’m supposed to keep him safe and make sure he’s happy but I feel like I can’t do that when I have no idea what’s going through his mind, what he’s thinking or feeling. Ever. And maybe I never will. How do I get over that grief? That I’ll never have a conversation with him, know what’s on his mind, what’s troubling him or how he’s feeling?? How do I keep him safe?

I don’t know who to go to for support, I feel so extremely alone and I want more than anything in the world for him to thrive and be happy. Does anyone know what support or help there is out there or anyway or anything that will help? Tonight was another terrible and challenging night after I bathed him (he came back from his dad’s this morning) and I just had to go into my car when he was finally asleep and I completely fell apart. So here iam, writing this to strangers who hopefully understand how I’m feeling and have or are experiencing similar situations. Please tell me this gets better? I have so much fear and anxiety over his/our future and at the moment it just feels like I’m in a black hole and I’m dreading waking up to do it all again tomorrow.

If you read this far, thank you so much for being with me and taking the time to read.❤️

Hi, I read through your post and honestly I really sympathise with you , I have no advice but just want to say if you feel like you need someone to talk to, my inbox is open for you . Every mother has her struggles but us SEN mom's have it a lot harder.

He sounds so similar to my son even down to the smearing when distressed

With the talking/communication have you looked up gestalt speech there is website called meaningful speech which explain this very well they have a free course aswell which explains how this parroting and repeating phrases is communication not just gibberish knowing this has really helped understand what my son is trying to let us know.

I wouldn’t limit screen time what is he doing on the iPad is it watching videos flicking through pictures or games?

My son is also very defiant when he is anxious because he is so worried he is trying to control the situation and the more you try and control the situation the more he will push back and it becomes a vicious circle. Look at low demand parenting I only wash my sons hair once a week because he hates it so much. Look at what things you are expecting of him and are they really necessary or are you doing them because you think that is how you would parent a typical child hope that makes sense.

Your son has gone through and going through some massive changes that would make any child distressed you aren’t doing anything wrong he will be happy and thrive he did before

we moved and “home schooled” (watched tv and played in the garden) for a year before he got into a special school it was hard but he is just starting to be more calmer and talkative.

I feel sad about my son most days I think that is normal with special needs parenting and everyday stresses like moving and having a difficult days back to back make it worse the nicest days I have with my son are the days when I don’t expect anything from him and don’t plan anything every time I planned to do an activity to help his development it didn’t work following his lead and his own interests got the best out of him.

I would start the process for applying for special needs schools now aswell this will help you feel more hopeful about the future too

feel free to pm me if you want there are so many similar stories to yours on these special needs boards and so many knowledgeable posters

Rather than telling DS not to do something have you tried rewording what you say to tell him what you do want him to do. It doesn’t work for all, but it doesn’t for some. For low demand techniques, some people find Yvonne Newbold’s resources helpful.

Do you have a shower? Would DS try that? Some prefer showers, some baths.

I may be way off the mark, but I would wonder if something with hair washing had happened when with his dad. Would dad try to force the issue?

Are you moving within the same LA? If so, request an early review now. If you are moving LA, when you move, don’t EHE. Inform the LA they must ensure DS receives a suitable, full-time education and anything in F of the EHCP.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS. If not, request them now (if staying in same LA) or after you move (if moving LA). Also look at the local short breaks offer.

Has DS tried any communication methods? Maybe one that uses the technology if DS likes his iPad.

A hand hold.
I second everything @BrumToTheRescue has said, a social care assessment could provide you with carers and Respite and this is all great to prepare him for a new school move.

My son was very similar at this age. You are not alone, keep chatting on here. If you need help with anything.

call social services explain about your son and ask for a child in need assessment.

That sounds so tough, but you’re not the only one at all. just had my NV ASD 6yo screaming about I’ve no idea what.

Don’t be hard on yourself. It sounds like you are doing your absolute best. It won’t always be like this.

My heart breaks for you and your son. I hope things will get better for both of you. I understand how you are feeling. It is awful being afraid of the future. Most of us here are scared, stressed, worried and tired. It can get very lonely, I know. Sending you a hug!