I've just had enough...

[Holly221288]

Thanks in advance to anyone taking to read. I will try to not write an essay.

I have a 5 year old son (youngest sibling of 3 - my other two children are neurotypical). He is in full time school. We are under a paediatrician and he has recently had a brain MRI and some genetic blood testing. I think these have only been done to rule things out and she is leaning more towards ASD/ADD/Dyspraxia.

On first meeting you would probably think he is a NT little boy other than his significant speech delay and stammar. However he has some quite severe sensory issues (ie will only wear certain clothes, can't tolerate labels, light sensitivity, noise sensitivity), a very restricted diet, no social boundaries and very limited interest in others and he is never still.

Initially school seemed really supportive but I have just had a zoom parents evening and been left to feel I am imagining it all. They said he has some sensory issues and quirks but believe if he did get a diagnosis, it would be something very mild. They kept stating very mild repeatedly, as if they don't think it's worth pursuing. They also said they can understand while I might find his behaviour hard at home with being a single parent.

I am just over having to fight for every little thing for him because he is not 'severe' enough. Don't get me wrong I wouldn't want him to be any worse of course but I am not imagining it. His routines/obsessions/sensitivities have a significant impact on our life. And I am a working mum who runs a flipping tight ship, it is not like my children run rings around me.

Sorry for the mini rant, I just don't really have anyone to say all this to

Rant away, I could have written your post a few years ago. It sounds like he is masking at school, probably to try and ‘fit in’ or not be in trouble. Of course by the time he gets home he will be very wound up.
The school didn’t give much currency to what I told the either ( also single parent).

It all came to a head when DS could mask no longer at school Year 4.
Also there seemed to be a thing about DS still being ‘young’ and waiting until he was 7 as ‘we don’t want to label him’.
I faced some pretty extreme behaviours, was left to struggle, but as soon as acted out at school they changed their tune🙄
DS is diagnosed now and at a special school.
Could you afford a private assessment? Otherwise you could be languishing on waiting lists for years.

Your post really resonated with me,we are in a very similar situation. It is totally exhausting and feels like you are shouting through a glass box to anyone you encounter including family in our case, it is really hard.

@littleHen84 sending you huge hugs. If you need to rant/chat feel free to message xx

Thank you thats really kind , we have virtually the same issues with our Son and are trying to get help in place ready for when he starts School, the way things are going we may end up Home Schooling which puts pressure on finances aswel, everything seems such a tangle atm. We have had our house sale fall through after we had spent alot of money on searches which would of helped money wise, the house we had bought has just been relisted and they have increased the price after they led us on for months....and breathe sorry for the slightly off topic rant there but its all addedto the overwhelming stress lately.

I feel for you, my DS's needs were dismissed by everyone as "mild" , until the wheels came off disastrously at school, and then they changed the narrative very quickly.

And with my DD there is usually a very, very marked difference in her behaviour publicly and privately. DH and I are sometimes literally shaking when we leave the house because of the immense anxiety and meltdowns we have supported her with to just get out of the door, then in public she is suddenly "fine" and our friends can't understand why DH and I are in bits and on the edge. They're convinced we're imagining or exaggerating it.

And totally get you about running a tight parenting ship. It's galling and dismissive when professionals don't see or acknowledge that.