AIBU to worry about this?

[anotherworriedmum123]

My almost 5 year old son is exhibiting some extremely difficult behaviour, in and out of school, both school and myself believe his frustration is down to his severe speech delay which he is having therapy for. However we do also believe there is ‘something else’. School witnessed a huge, disproportionate (to us) meltdown at school pick up over a cookie and it was the icing on the cake so to speak. We have a GP appointment on Friday to discuss a peads referral for him.

Today at speech therapy, he was more ‘out of control’ than usual, dad usually takes him as we also have a 1 year old who can be quite distracting to him but I did it today (along with daughter). He always plays up with me more and people have said it’s because I’m his ‘safe space’.

He has also started covering his ears a lot and become sensitive to sounds, this is very new.

My main worry and reason for posting… he was very unwell when he was first born, it took me 6 weeks in the peak of covid to get anyone to listen to me, I had a consultant call me a neurotic first time mum to my face. He was later diagnosed with a rare cleft after me fighting. However this left me with a major distrust and left me convinced he was going to die for about 18 months. I had and still have therapy.

I am worried that they are going to blame me for a potential neurodivergence but I know my anxiety is just quite heightened at the moment.

Am I doing the right thing by fighting his corner? He needs help 100% but I’m scared they will blame it on me being anxious when he was younger, if I’m even making sense…

He is such a wondeful, intelligent and amazing little boy who is massively struggling as are we. I just want to help him :(

thanks x

Absolutely none of this is your fault. You were right that something was wrong in the early days, keep fighting his corner. I am sorry that it can be so overwhelming.

For what it’s worth, I had similar issues getting anyone to listen when my daughter was little (health visitor was convinced I was ‘over-medicalising’ after a long nicu stay - and even quite close family thought I was being a little bonkers). Not bonkers - finally got excellent support from portage (despite the HV calling them and saying I was being over-anxious) that kick started other services and helped me build back my confidence. Eventually referred back to paeds, and we now know that Dd has a rare genetic disorder - which has led to her having quite complex needs and a lot of surgery. She is now a teen, and doing well with good support (though we still sometimes have to fight for it). She is building skills all the time but will always need help with daily living.

Hang in there, and keep being the warrior you need to be. Look after yourself too - someone once told me it’s a marathon not a sprint. They were right. 💐

You are absolutely doing the right thing by advocating for your child. Nothing you have done has caused this, without you fighting for him as a newborn things could've turned out so much worse for him. You were right then and you are still his greatest advocate and support.

You can’t cause a neurodivergence in your child, it sounds like he is really struggling and advocating for him and pushing for whatever assessments, support & services he needs is absolutely the right thing to do. Hugs to yoi

I can’t tell you how thankful I am for your reply. Oh yes I’ve had my fair share of all this anxious mum stuff too which I obviously am! My worry ended us with a social care referral!! It nearly killed me, it was closed as quick as it was open and I was at the end of my block of therapy at the time and doing amazing. But now, if any health issues creep up I panic that they will think I’m anxious and do it again. I can’t trust anyone, it’s awful. I feel so lost. My current HV treats me as if I’m an anxious mess but never actually acknowledges all the incredibly hard work I’ve put in to turn up for my children every single day with no horrific anxiety :( thanks for your comment xxx

Thanks so much.
After his diagnosis I became an absolute shell of myself… I was rushing him to a&e for everything because I was convinced he would die and nobody would believe me, now I’ve got myself in abit of a mess because I feel like everything i say is fobbed off because I was THE ultimate anxious mother.
I’ve wrote lots of notes for Fridays appointment, school also have concerns and the speech therapist witnessed him covering his ears today and freaking out over the noises in the room. My heart breaks for him x

Thank you, I really needed to hear that.
Before having my own children, I was ignorant and thought that children were a reflection of their parents entirely. I have since learnt that certain things are out of control. I know I am a fantastic mother and have tried my absolute best above and beyond. I just hope that something can help him, he is so frustrated x

Have you considered that you may have PTSD?

My heart absolutely goes out to you. It sounds horrendous. I’m glad you are still having some counselling support - it is a lot of trauma to manage.

Even if they do refer again, you can manage that too if you have to. None of this is your fault. I know what you mean re previously thinking kids are an entire reflection- I used to be really proud dd ate loads of vegetables (it must be because we do 😉) and then her brother turned up and refused the lot of them, which soon taught me to be smug!

Good luck Friday. Present the issues as calmly and logically as you can, and maybe take someone with you for support if you are able to? It is so hard after a rare issue hasn’t been diagnosed - I found people would say “but that’s really rare”, and it would be of no consolation to me at all - as dd too often seems to be a statistical anomaly. A consultant once told me “everybody dies on the internet”. While he was right that adverse outcomes are definitely over-represented online, it didn’t stop me thinking “yes, but at least some of them did actually die - and this is my daughter!”. Over time though, as she has got older, tougher, and more able to express herself it has definitely got easier. Hang in there.

I have been diagnosed with complex PTSD 💐