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.

Here is where I am. The medication side has been more or less as described, and the part nobody prepared me for is everything around it: what to say to people, how to plan a week, and how to tell the difference between a thing to endure and a thing to raise.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

Sorry for the length. If anyone has been here, I would very much like to hear it.

GwythFishguard, UK

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

GigiNaples, IT

Building on what the opening post wrote rather than answering the original question.

What helped was lowering my own expectations of the week rather than trying to hold the week together.

WrenFacilitatorLeeds, UK

the reply above said something I want to sit with for a second.

I want to slow this down a little. There are four different answers flying about and they are all somebody's real experience, which makes them true and not necessarily relevant to the person who asked.

16me too 4

PipBristol, UK

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

ÖzlemIzmir, TR

the reply above said something I want to sit with for a second.

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

NkosiJohannesburg, ZA

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

SerenLlandudno, UK

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

8me too 5

LinnetKendal, UK

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

LandoLeeds, UK

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

PamSouthport, UK

#10

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

10me too 4

ZoraSarajevo, BA

#11

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

IzoldaVilnius, LT

#12

I did exactly the same and felt terrible about it. You have not done anything wrong.

FitzLimerick, IE

#13

Building on what the reply above wrote rather than answering the original question.

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

BrennaEnniskillen, NI

#14

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

KeeleyBlackpool, UK

#15

Reading the reply above, I recognised more of that than I expected to.

Please do not read the comments under news articles about this. I lost a fortnight to that.

BramberSteyning, UK

#16

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

SableCape Town, ZA

#17

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

GwythFishguard, UK

#18

the reply above said something I want to sit with for a second.

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

9me too 8

WrenFacilitatorLeeds, UK

#19

Reading the reply above, I recognised more of that than I expected to.

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

IdrisCardiff, UK

#20

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?