To find it so hard to accept my life?

[Defeatedbylife]

My son is disabled, no chance of an independent life ever.Today im finding it so hard to accept.Im finding it so hard to watch other families around me planning trips, taking their kids to different places having fun with them.i cant enjoy my kids because of the restrictions my disabled son has put on all our lives.my son hates being outside and screams non stop after a few minutes, doesnt matter where we go,theres no calming him.ive tried everything, ive lost count of the amount of times weve drove somewhere as a family and drove home within minutes of arriving.ive lost count of the amount of times ive wiped away my other kids sad and frustrated tears.six long weeks of being cooped up indoors lie ahead and i feel like climbing into bed and never getting out.im so jealous of everyone with a normal life.
Not looking for anything by writing this post,just had to get my feelings out.

I'm really sorry

This sounds so hard and you are doing so well. There must be help available? Does your DS get respite so you can do things with your other children? Or your other children get support as young carers?

2 hours a week respite,a drop in a very big ocean of hard work day and night

You poor thing. Don't you have anyone you can share the load with? DP who could stay home with Ds so you can take other children out? Grandparents?

Sad for your other dc. Isn't there any form of respite care you could be entitled to? Surely there must be something?

Im not doing well,im sitting here like a zombie on high strength anti depressants to get me through each day as its all so hard and overwhelming. Feel like im failing all my kids every day,feel like i should never have been obsessed with having one more child,who turned out to be disabled .its all on me.

So sorry, lovely ❤️

If I were you I would pay privately for some respite care through the holidays. 1 day per week if that's all you can manage, just to take the other kids on a day trip.

It's not your fault...you couldn't see into the future. It's a risk everyone takes when they decide to have a child.

Sending a big hug x

Sorry that sounds a bit wrong using the word 'risk'...I just meant it could literally happen to anyone

Everyonè finds him to hard to manage,hes a tornado at home,never sits, makes constant mess breaks things.finding childcare if this sort isnt easy,believe me ive tried. Its been years like this,never seem to catch a break,other kids have improvements, hes still like a baby. Im so tired of it all.

I understand OP, I'm having a particularly hard time with my severely disabled DS at the moment. Things feel so bleak and hopeless I can't even bear to write them down, and my quality of life is virtually zero. Sorry I don't have any words of wisdom for you.

I didn't want to read and run. I do feel for you OP.
I am a carer too- a slighty different set of circumstances, but I do understand the limitations.
As a PP has said can you look into support? We have am amazing lical organisation that provides support, respite, even free professional counselling.
One thing that has helped me is to drop the idea of "family days out". Expectations of having the whole "waltons" style family on some amazing day out have to be examined.
Look at different combinations of days out. Do you have a partner? Friend? Other adult around? Knowing your DS's possible trigger points and difficuties you could go out with your other children first and meet your DS afterwards? Or maybe your DS has an easier bond with one of your children, so an outing with three of you?
I am suggesting mixing things up a little, don't feel guilty. XX

I understand. It’s not the life you planned. The divide and separate approach keeps me and DH afloat. Have you had therapy for your grief?

This sounds so very hard, I’m sorry. I do have a little experience of this as my third born (in the process of being diagnosed) is very averse to being out of routine so days out/trips/ holidays are very distressing to him and we do a lot less as he can make it so miserable and my older ones miss out due to it. But he does tolerate and even enjoy some things out which gives us some light relief.

Could you pay a student in the summer to look after him at home once a week so you could take the others out for a day? Would he tolerate that? Or are his needs too great?
I hope you find some way of improving things a little.

For me there are two things. The first is accepting my life and the second is practical and mental support for living my life.

Ah, I feel for you so much lovely. Sending you kind thoughts and good wishes - it really isn’t your fault. I hope you can get some more respite soon. Xxxx

Is residential care an option? Sounds harsh but I don’t think there is anything wrong with it if it benefits the child and the rest of the family.

Hi @Defeatedbylife I’m so sorry things are so hard. I knew before I opened the thread what this might be about. I had a severely ill baby and felt the same as you for a long time. I longed for normal and some time off. I have no advice but wanted to send a hug from someone who understands.
Can you pay privately for some respite help?

I’m sorry, this sounds so difficult. I was going to suggest trying for some respite care but I see that’s already been suggested. Other than that I have no practical advice.

Are you a single mum? If possible could you look at swapping with your DH if you have one so you both take turns staying with your son/taking the other children out. I don’t know if that would be workable for you.

Could you contact a local church, Salvation Army etc, and ask if anyone can help? One of my friends has found support this way. Worth a try?

So sorry you are going through this. I pray for Jesus strength over you and the family.

Sounds so hard I'm not going to try and give advice as I'm sure you've tried most things but just want to send you a massive hug

I’m so sorry