Unpredictable noise…

[Wavyshake]

This is just to offload…I don’t know anyone else in this position (although I know lots of other parents are, just not personally) and it’s lonely.

My youngest DS (3) is so fearful of everything. Every sound. Every change. Every time I have to leave him (work). His whole world is spent in fear…Tonight, before his usual bath, a motorbike went up the road. Queue meltdown. Hysterical crying, uncontrollably for 30 mins before he fell asleep from exhaustion. No bath, which he loves, no rationalising (not that you can much with a 3 year old) and again another unexpected noise that caused complete meltdown.

He won’t wear ear defenders / headphones, despite best efforts.

I stupidly booked a holiday so going on an aeroplane. How did I even think he would manage this.

Hello, this sounds very challenging. Have you looked into an occupational therapy assessment? I am not sure if you have a diagnosis (sorry if I’ve missed this) but reach out to your loacal
child development centre or health visitor. There is help out there but you may need specialist OT support

Thanks for replying, he’s on the OT waiting list but has been for a long time now, no formal diagnosis but most hospital letters now refer to suspected autism, AFRID with a host of other physical health issues. Every day we have to predict noise. On holiday I have to pack his entire meals and snacks for the week as he only eats a very specific diet (aspiration as well as sensory).

Ive made such a mistake with this holiday but my older two are so looking forward to it. Eldest has autism but very different presentation to my youngest.

Ok, well I would chase the referral and emphasise the distress your child
is experiencing and the worsening AFRID. Do you have any funds for a private OT assessment / intervention to look at sensory processing?
Are there any sensory inputs your child accepts/enjoys? Eg deep pressure (hugging, squeezing, tight spaces)? Rocking/ vibration? The reason I
ask, is that deep
pressure can reduce the effect
of over sensitivity to other inputs (especially light touch) and may be worth giving a try .
your child may also be sensitive to tactile input /textures etc , which may make so many things uncomfortable for them that yoh may not be aware of?
Have you got access to resources l(eg books, local NHS websites can be helpful
on sensory processing )

Thanks for taking the time to reply. I chased a few months ago and was 90-250 week waiting list. I think I may look for private assessment but aware it’s costly.
I feel awful but I cannot work out what comforts him, he runs for comfort to us (his dad and myself) and he’s hugged, but all limbs come out - a bit like a startle reflex and he screams and screams. There is no amount of reassurance that provides any reduction in distress. I have tried hugging tightly, singing, rocking, using a blanket but he just screams, sweats ++ and cries. It’s heartbreaking.
sometimes we can go a week or so without an incident, then when one happens, he becomes so hypersensitive to noise that everything triggers him. Even a diffuser in the house!

I have been looking up sensory processing and will look at more local nhs information.

Some find background white noise helps them cope with other noises. But for others this can be a sensory nightmare. If you think it would could try it at home.

Does DS have an EHCP? If so, is sensory OT in there? If it is, you don’t need to sit on the normal waiting list.

Thanks for your reply, we do use white noise but seems to have little effect for him unfortunately. It’s the unpredictable sounds - so motorbikes are a big one, lawn mowers, sudden squeal etc. However he can also be mega loud and can deal with soft play (most of the time) so seems to be more the unexpected noise that really impacts him.

No EHCP yet - he is only just about to start pre school but is under ‘nursery plus’ which apparently is support before school age in preparation for school. Although my LA (like most others) is under funded and stretched so I’m not holding out huge amounts of hope that nursery plus will be able to provide much support.

You can request an EHCNA yourself now. On their website, IPSEA has a model letter you can use.