Burned out caring for high needs child, should I be honest?

[geminicancerean]

After nearly twelve years of parenting my high needs DC, I have reached a point where I am well and truly burned out.

I’ve experienced burnouts before, but they didn’t affect me like this current one, and I’m frightened and don’t know what to do.

I see absolutely no future in which I am happy or fulfilled. I only see me and my family surviving each day, week, month. I feel like I have no agency, I can’t pop out by myself for example. I can’t go to bed when I want, I have to be upstairs when DC goes to bed or we get a screaming meltdown, violence, self injurious behaviour, and their sibling gets scared. I can’t even listen to my favourite music while I’m cooking because it illicits a screaming meltdown. Don’t suggest headphones, they are removed from my head and thrown. I’m also not allowed to wear my hair in braids or bunches.

I have two chronic conditions, one autoimmune, one bowel related, my immune system is atrocious and I pick up every virus going - they always last ages and often end up in chest/tonsil/sinus infections. Everybody is really noticing how run down I am now and my DH is frightened, I think. Obviously he’s running on fumes too.

I try to be honest with my family and my son’s school and disability social worker about how I’m feeling but I feel so bad right now that I’m too scared to be honest. I just want to run away, or fall asleep and not wake up. (This will trigger a post by HQ, pls MN, I am not suicidal or actively making plans, I just have no life).

We have a Child In Need meeting next week and I am already dreading it. If I am honest about how bad I feel it’s most likely that they will say ‘sorry to hear that’ and then move on, which is what they usually do, or they will take it, fly with it, and we’ll be in shit. They always suggest ‘support groups’ online or in person, which I get, yeah, I’ve joined a few, but I am so burned out that I can’t imagine enjoying no but sitting in a white room and staring at the walls and enjoying the silence.

We tried overnight respite really tried, over months. Couldn’t get DC settled into it. So now we are just stuck.

Should I even be honest at this meeting? Is there any point? Does it ever get easier?

Yes, I would be honest and push for further support.

Do you have daytime care hours? If so, how many?

You say you have tried respite for months, but how long are we talking? Was it just one provider you tried? DS1 took over a year before he settled at his overnight respite provider. That length of time isn't unusual. Have you looked at other providers? Have you tried overnight care at home?

Does DC attend school full-time? Do you think the school is the right placement? What support is being provided via the EHCP?

Has DC had a home OT assessment?

Does the same apply to in ear earphones as it does the headphones?