Reached my limit...

[Shellywelly1973]

Ds7 has a dx of ASD & ADHD.
He's goes to ss school. He is an intelligent boy but very delayed socially & emotionally.

He's still awake-yet again. Im exhausted. He's been up since 6am. I dozed back off to sleep this morning(never normally do this,but i can't manage on 4/5 hours sleep) He set the kitchen on fire. Thank God he called me but another few minutes&the whole place would have gone up. Spent hours cleaning the mess up.

He can't cope at playscheme&refuses to go. Rarely leaves the house given the choice. I have 2other dc,dd11& ds4 at home as well. Ds hates,i mean really hates ds4. They fight,argue&physically fight within minutes of me leaving the room. Dd11 is deeply affected by Ds7 behaviour. She's over eating&very unhappy.

The respite we have is patch&unreliable. I feel totally mental from the day in day out slog.

Sorry on phone&pressed too soon!

How do i keep doing this? Im in a weird place mentally...i waited 3 years to get him into full time school&its almost as if i can't manage since he started school.

I explained it to an old friend like this, it feels as if i was in a noisy room&got used to the noise but someone let me out. Now i know how quiet /easy it can be,i can't bare going back into the noisy room...

I kept telling myself it would get easier as he got older but its not,its more complicated. I can't stand the stress,the rituals, the appointments,the day to day ASD stuff.

How do you keep going? how i make the best of this situation? how do i stop myself going mad? Sorry for whinging,i tell myself all the time ds is lucky &has so much going for him...Im just exhausted.

TIA.

That must have been very scary for you x

Is there any way you can lock the kitchen door? or put a lock on it then everything you dont wish him to use put in there?

Put a lock on every room bar his and the front room you are in that way at least if he is being occupied and you doze off the only thing he could do is either wake you or shout about it :)

You got to have rest x If you get DLA could you put some of it towards a day club for the other 2 to give them a break and then its just you and him maybe?

Its hard and I feel for you.

I do not see this as whinging, I see it as coming for support. I did it myself the other day and got plenty.

It sounds very difficult. Are there any friends or family who could help out?

I am not much use, but just wanted to let you know I am at least listening.

Unfortunately I don't have the answers but I have t see I completely understand your room analogy. I feel the same since DS started full time. Now I know what down time is and I resent that it can't always be like that. I understand how other parents have it.

If you don't already get DLA apply for it. Use it for someone to take the other kids out for a bit of respite from their brother, and also use it for someone to come to yours sometimes so you can go to bed sometimes if you need to.

Have you been assessed by social services for direct payments? They may be able to fund a helper for a few hours a week??

It's so scary when they do something dangerous isn't it. I once woke up in the small hours to find DS sat next to me in my bed, trying to open the battery compartment of a toy with a very large sharp kitchen knife! I was so sleep deprived I had slept through him going downstairs.

Since then have implemented a strict rule that if he wakes up he isn't allowed downstairs without me.

I've also in the past put door alarms on certain doors (you can get them very cheaply) to alert me if he is trying to leave the house or go into the kitchen at night.

this guide to Human Rights for Carers may be useful. Looks like lawyers are starting to challenge inadequate respite under human rights legislation.
You also need to make a formal complaint about the current respite being patchy etc and take it as far as the Ombudsman.
Have you had a carers assessment and an assessment of the child?

Shelley so glad ds did alert you and situation not a lot worse you must have got such a fright. Do you have social worker? If so get onto them and ask for respite situation to be sorted as you need it asap. Poor you, you must be exhausted. As others said direct payments or DLA would be useful to fund activities for your other DC or for someone to take them out. Dont have any advice really other than what has already been said. (((((hugs))))) hope you get some help soon xx