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Help coping while we wait on assessment

7 replies

Jasmine876 · 19/12/2023 21:57

My son is 7 years old and has been placed on the waiting list for assessment by the autism team. The waitlist is currently 2.5 years long in our area. The last few weeks have been particularly trying- likely due to the build up of Xmas. He has went from meltdowns maybe once a week or fortnight to daily. Bedtime has became really challenging and he just constantly seems overstimulated.
Is there anything we can do for support in the meanwhile? Anything we can do to help my son cope? I’ve found things like a projector light help a little with bedtime but I’ve no idea how to manage the meltdowns successfully and feel so out my depth. It’s also impacting on siblings who can’t get to sleep with the bedtime meltdowns.

OP posts:
Mummytodo · 19/12/2023 22:14

It depends what does he like? Or doesn't like? My daughter is both a sensory seeker and avoider.

Her bedroom is mainly lights, a swing a calming place for her about around the house there are many other things she has to use when she is in a sensory seeking mood, swing, play doh, colouring stuff, sensory stepping stones, peanut ball

Daughter likes christmas but think a full on kitted house with lots of flashing lights would be too much so we just have a tree up

Jasmine876 · 20/12/2023 00:14

He isn’t a fan of noise so he has ear defenders. He does seem to like things like tents, projectors/lights etc. We have just got a tree this year too as it’s too much for him. I feel the spike in activity hasn’t helped (even though we haven’t done anything extra, it’s just school stuff) and myself and my husband are working different hours to normal so routine is off a bit.

genuinely have never felt so useless in my life!

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KeepGoingThomas · 20/12/2023 13:27

I second looking at sensory equipment/toys to help DS regulate. Does DS share a room? If so, can you make it his space for a while after school so he has somewhere he can go to decompress alone.

What support is DS receiving at school? If school was easier for DS home life would improve too. Have a read about the coke bottle effect.

Some people find Ross Greene’s The Explosive Child book helpful. Others find The Out of Sync Child book useful.

UniversalTruth · 20/12/2023 14:00

I think I've been where you are. We are still waiting assessment but we have tried lots of things and some have worked. Most importantly, ds knows we're trying to help him. I wouldn't try more than one at a time for a few days so you know if it helps, also you could revisit some after the crazy Christmas period even if they don't help now.

For meltdowns, some things to try - zero eye contact, very soft speaking/non verbal communication, hard squeeze/hair stroking helps some children to calm down but some need no touch. If you can spot the pre-meltdown and initiate these things all the better. We also find humour or talking about special interests helps ds regulate his emotion when getting near meltdowns.

For bedtime - ideas are visual timer on last activity before bed, same routine, weighted blanket, projector/night light, white noise.

For avoiding meltdowns, maybe look at PDA/low demand resources - what can you let go? We've let go of: getting dressed up to see relatives (sensory with clothing), sitting at the table when dinner is ready (hunger = too much pressure, we let him stand near the table and eat something then sit when he's ready), asking how he is verbally (we do thumbs up/thumbs down action to ask him), surprise presents (the anticipation is too much).

For you - gin/chocolate/tea. It's a journey to work out what might help your ds and you have got this.

Bobobab · 20/12/2023 21:29

Might be different for some people but diagnosis hasn't changed a thing for us so please don't see that as a barrier to help.
Are school supporting and are there any issues there?
Out of Sync child is another good book that might help if sensory challenges are the problem (again school should help with that and be able to refer for OT support)

Jasmine876 · 29/12/2023 11:03

Sorry everyone I haven’t been online for a while. The school are being nice about it all but don’t seem to think there is an issue. They have noted poor eye and sensitivity to noise but don’t see any issue otherwise. In fairness, I think he masks everything very well then things fall apart at home. The last few weeks have felt worse than normal. I feel I’m at a loss as it’s years before we will even see the neuro developmental team.

OP posts:
KeepGoingThomas · 29/12/2023 12:11

It isn’t uncommon for schools to think DC are ‘fine’ at school. But, support in school can still be provided without a diagnosis. Have you spoken to the SENCO? What support are they providing?

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