My son has learning disabilities and this is my responsibility

Started 3 March 2025 · 20 replies · 214 hearts · read 2.6k times

SableCape Town, ZA · 3 March 2025

1.4 years ago

My son has learning disabilities and this is my responsibility Writing it down partly to work out what I actually think.

Practical question, and possibly a silly one.

I have tried three arrangements and none of them has survived a difficult week, which suggests I am designing for good weeks.

The thing I have not been able to find anywhere is how people manage this when the week has no fixed shape at all.

If anybody has an arrangement that works and is willing to write it out, I would be very grateful.

GwythFishguard, UK

I do mine at six in the morning because that is the only twenty minutes of the day that belongs to me.

GigiNaples, IT

To the opening post rather than to the thread: Sable, this is my version of it.

The exhaustion was already there before any of this. Working out what was new and what was simply caring took me a long time.

WrenFacilitatorLeeds, UK

Speaking as a facilitator: the person who asked wanted company for a difficult week rather than a plan, and the thread has given both, in that order.

16me too 4

PipBristol, UK

What I found is that the logistics assume a person with a spare afternoon, and I have not had a spare afternoon since 2019.

ÖzlemIzmir, TR

Gigi — yes, and the bit that took me longest to accept was the next part.

My GP asked how I was doing as a carer, once, unprompted, and I cried in the appointment, which surprised us both.

NkosiJohannesburg, ZA

What helped was one hour a fortnight that is genuinely mine, arranged formally, so that it cannot quietly disappear.

SerenLlandudno, UK

Something practical: I got my collections aligned with the ones I already do for somebody else, and it saved me a journey a month.

8me too 5

LinnetKendal, UK

Eating properly is the thing that goes first when I am stretched, and it goes without me noticing, and this circle is where I noticed.

LandoLeeds, UK

I would say ask about a carer's assessment if you have not. Mine took an hour and unlocked things I did not know existed.

PamSouthport, UK

#10

The guilt about spending money or time on myself was the hardest part, and it is still the hardest part two years in.

10me too 4

ZoraSarajevo, BA

#11

I keep everything in one bag that travels with me, because I am rarely in the same place two nights running.

IzoldaVilnius, LT

#12

Holding this with you rather than answering it.

FitzLimerick, IE

#13

Building on what Izolda wrote rather than answering the original question.

My routine is completely non-negotiable because it has to be. Everything else in my week bends and this does not.

BrennaEnniskillen, NI

#14

Something I have learned here is that looking after myself is not in competition with looking after him, even when it feels like it is.

KeeleyBlackpool, UK

#15

Building on what Fitz wrote rather than answering the original question.

My sleep is broken for reasons that have nothing to do with this, and separating the tiredness has been the hardest analytical problem.

BramberSteyning, UK

#16

What I would say to somebody starting is to build it into something you already do, because anything additional will not survive a difficult month.

SableCape Town, ZA

#17

Somebody in this circle said that carers are the group most likely to describe themselves as fine, and I recognised myself immediately.

GwythFishguard, UK

#18

Picking up Sable’s point rather than starting a new one.

The appointments are the difficult logistics. Finding cover for an hour is harder than any of the medical side.

9me too 8

WrenFacilitatorLeeds, UK

#19

A standing reminder rather than a correction of anybody: suggestions here often quietly assume a car, a spare afternoon or a household that can absorb the disruption. Several members have none of those, and it is worth saying what a suggestion assumes.

IdrisCardiff, UK

#20

The thing that nearly stopped me was a fortnight where his needs increased and I had no capacity for anything of my own.