life limited in more ways than one!

[devientenigma]

ok a bit of a rant in a way..........the social worker and home tutor have agreed we have a limited lifestyle to most families of disabled kids, however they are still baffled how to help. I'm getting more and more stir crazy and tired. Don't know how much more of this I can take but know I will keep plodding.

DS needs constant supervision, so if I'm not ready before DH goes to work........tough! I can't do housework throughout the day until DH is home, then weekends are spent catching up, housework, all the mundane home stuff, paperwork etc. There's no fun, not that there was much anyway.

I need to turn my life around but unsure how with the demands needed of me. I need fun, I need ideas to have fun as a family, as a couple on my own. I have so lost the plot and have been stuck in this lifestyle for too long. Any ideas welcome?

could SS fund a cleaner for you, so at least you don't have to catch up with all the house stuff once DS is in bed? I know respite has been a v difficult area, would it work any better if a respite carer came to your house and you and DH could go out?

Can anyone help you out with housework, a family friend or other family members.?

Might help so u can spend that time doing more things as a family.

Definately ask them to fund a cleaner. That would at least alleviate the nightime cleaning so you can perhaps relax with your DH. Or maybe when your DH is home you wold be free to join some evening classes just for you and meet some new people outside of your home x

you know meeting new people almost scares me, I don't mind online, think I have been prisoner at home for too long, sounds good though. Yeah maybe me and DH need to do something alone together, no kids. Don't hold any hopes for cleaner lol, this is why kids need to be in school/respite!

thanks though x

Could ss help more with the other kids so that you haven't got so much to do as well as looking after ds?(and pay for a cleaner!)

Why can't they provide a support worker to supervise your DS for some hours, while you do the essentials, then some respite hours too?

Of course they can do it. What is so difficult? Is your DS the only child on the planet that needs constant supervision? NO. Is your DS a rare breed? Not a bit.

Why don't they think that they can support you? They need to give you what you need, and that is likely to be a rather large number of hours of support.

Can I be a (little bit) harsh also? As one with a child who is rather controlling at times, it can be soo easy to play into their hands.

For example, today, DD1 was at the park. She was deliberately doing really dangerous things, for our reaction - rock and a hard place. What do you do?

It sprang to mind, because I know you have trouble getting your DS to engage with things that are set up. In a sense, you are right - there is something huge that is preventing him from accessing education, etc.

But you know your own home is safe for him. You know your home is somewhere he is comfortable. If he won't go out for respite, what is stopping you going out for respite? Ask them to provide someone to sit with him in his own home, where you know he is safe, and you go out to get a break.

There comes a point where you have to balance his needs with your own, and right now, he is holding all the cards.

I agree with what Lougle says about balancing. My son is very violent and destructive if things don't go his way. He has physically hurt me and other people in the home BUT I have to have some time away for my own sake (and his, as my health and happiness enables me to continue looking after him).

It takes a while for him to get to know someone, so we started with the worker coming for 20 mins and chatting to me with him in the room, then her coming for 30 mins and doing something he chose/ liked and this went on for weeks. Eventually, I could then pop out for 10 mins and gradually (over a year) up to 2 hours. He would also go out with her, for a bit, but would sometimes refuse, so it was good to know that he would stay in with her.

My son is all about control. He wants to control me and for my life to be all about him and his needs. It isn't good for either of us.

Countless workers have stopped working with my son because of his violence. You can convince yourself that your child is beyond reach of others, but this can be turned around with time and the right person.