NC for this.
I’m so burnt out and worried about my little boy and his future. I’m worried that I’m a crap mum and it’s all my fault.
DS is 4, autistic, non-verbal, global developmental delay presenting with the mental age of about 18 months.
Let me start by saying he is SO loved. I absolutely adore him to pieces and he knows that. He is so warm and honestly the happiest little boy inside. And he is the most beautiful little boy I have ever seen. And I will do everything in my power to always protect him and be here for him.
But I worry about his delays and how delayed he actually is. I never want to compare but I see four year olds without additional needs and they’re conversing, drawing, answering questions, playing with others, etc. It makes me feel sad for my
child.
He does not have one single word. He makes lots of noises, laughs etc, but he can’t even point. He is so smart and has learned to communicate with us by leading us by the hand, we of course know him inside and out so we can communicate with him.
He helps us dress him and understands some things - ie: when we’re out and I say ‘hand’ he will immediately hold my hand, or if I hold my arms out and say ‘cuddle’ he will come to me. But that’s about it.
He is still in nappies. He still eats finger food or his spoon fed. He doesn’t play properly - it’s always one thing to the next or throwing things. He hits himself a lot which is hard to see and we do all we can and have been advised to do to support him but he’s strong. He has meltdowns badly. I don’t remember the last time we had a family meal. We don’t even get invited to family events because my family say it’s ’too much’ for him. He will scream and scream and scream. Trying to get him
off the floor in the supermarket because he’s having the ultimate meltdown is hard. And of course we always get stared at.
He doesn’t listen to ‘no’. I’m not sure he understands it. He will just laugh at me if I tell him off or try to explain why we don’t do this or that. Sometimes it’s humiliating for me.
He has now started attacking me but not in a horrible way. I think he just finds my hurt reaction funny and thinks it’s a game. He’s started pulling my hair so hard to the point I started crying and he still wouldn’t stop. He will come up and scratch and slap my face. The other day he picked up my phone and threw it at my face. He’s thrown things at my head that have left bruises. But we feel helpless.
He doesn’t understand social interactions or interacting with other children. We’re constantly excluded from parties and most things we do are led by him - I would rather he be happy and feel free than in any overwhelming situation just because that’s what ‘other parents’ would do. So if he’d rather go run in the field than go play in the play park that’s what we do.
I keep thinking about his future and what will happen.
What I love about my DS though is that he is bright and knows what he wants. No he can’t talk but for him to teach us how to communicate with him, how clever is that? I love how free he wants to be. He loves to run and to kick balls and he loves going to his SEN soft play sessions and trampoline parks. He is ALWAYS on the go. He is so loving and cuddly and gives me kisses all the time. My favourite thing is when he moves his face close to mine to show me that he loves me. I would love to know what goes on in his mind.
He goes to nursery two mornings a week and has a 1:1 who is amazing with him. He has been awarded his EHCP and a place at a SEN school for September. We have done Portage and have been on waiting list for speech & language for 2 years. Our health visitor isn’t very helpful. How can I put a helmet on my child to stop him hitting his head when anything on his head is sensory overload for him?
I cry most nights thinking maybe I’m just a crap parent and I haven’t done things right and maybe that’s why he doesn’t understand. I question whether he hates me every time he hurts me.
I’m a working mum running my own business and things have slipped because of burnout, keeping up with everything is so hard. My partner is amazing and is a stay at home dad which helps massively. So why do I still feel overwhelmed?
I had PND for a year and was not in any way myself. I felt so lost and depressed after birth. I sought help and got treatment but it was a good year of feeling how I did before I started to get better. I constantly ask myself if I could have caused all of this by not being the mum I longed to be in the first year?
I just want my son to have the same experiences and opportunities and compassion as other children get.
I don’t know what I want from this post. I’m crying most nights and have been feeling so down recently. Every day is spent worrying about DS. I’m struggling to speak about it to anyone because I’m just exhausted from the thoughts and don’t have it in me to get it out. Which is why I guess I’m writing here.
I don’t even expect responses. I really just want someone to read this and acknowledge it. I just need someone to hear me.