I'm so tired of it all

[Lougle]

Haven't posted in ages, life has been busy.

DD1 is now undergoing ADHD conner's ratings. Got one back from the teacher, and we've done one. Despite DD going to a LD school where the staff think the sun shines out of her bottom, she scores highly on their form. I was surprised, tbh. I thought our form would be very negative, and theirs very positive.

We are just going through core-assessment as SS have finally accepted us onto the Children with Disabilities Team books.

Today, a Housing OT came out, is horrified at how we are trying to cope with a very explosive situation in a shoe-box house, and has told us that she will recommend rebanding to band 2, with extensive adaptations (either parlour type house with stair lift, but thinks epilepsy will rule it out. In which case, parlour house with downstairs bedroom and extension for downstairs bathroom). If we don't get somewhere within a few months, she will look at giving a direct-access rating, which means we would be matched to a potential house before it went on the housing list.

Most of all, I am just exhausted. I have the LD nurse every other week, the School intervention partnership weekly, Social worker every other week. When does it stop?

DD1 is very aggressive right now. I can't keep her and her sisters safe at the same time, we are worn out.

So wonder you are tired! As zzzz says hopefully in future things will get easier.

I keep promising myself that I wont let any more profs and agencies into our life as I'm no longer convinced that the effort involved - assesments, forms, waiting lists, travel to appts etc justifies what we get back in terms of support and treatment. But now we have health stuff to investigate and I daren't knock that back.

could you just concentrate on one priority - the house? Or do you need the other services to help build a case for housing?

it is tough and never ending. I'm getting through by thinking that next year it will all be done (but I said that last year)

thanks everyone

Justa - Children with ADHD often do respond to highly structured environments. Which is why most parents who are following this path are sent to Triple P classes first. We haven't been, but probably because DD1 is so far into the system.

The Housing thing is verry new. Literally last week, we were nowhere, and then I phoned to enquire why we hadn't been rebanded, and was told that the supporting letter from a professional wasn't very effective, but that they had, on the strength of my evidence form and other evidence, asked the OT to assess our need for rebanding.

I then got a phonecall on Friday last week to ask if the OT could visit today. Which is fantastic, because today, DD1 has an INSET day, so was here, and was on good form for a living example of the difficulties we face.

Given DD1's behaviour today, the OT was horrified at the thought of us carrying her upstairs, and she said that this alone was grounds for rebanding!

I think perhaps packing lists are a bridge too far...we are talking months ;)

Lougle Do you mind if I ask what the social worker is for? Is it a meeting/assessment or is it supposed to be respite?

Is the school intervention partnership something you and your dd are benefiting from or can some of them be done via email/phone? Or could you simply have a couple off?

It sounds like to me that you have struggled for so long holding it together that because someone 'official' has confirmed that your life IS indeed hard you've collapsed a bit with the relief and the strain of the stress of potential change. Not to mention it is the end of the school year too.

I really hope that this is a phase due to the timing of things and that on the horizon is some support and help.

so sorry you have had such a huge struggle poor you great news about the house , lets hope they get a move on asap.
I think you need a break[stating the obvious] but could you tell them all to wait STOP just a moment maybe for 2 or 3 weeks over the summer to give you a time to catch your breath surely you should be allowed that much.
Dont let them bully you say i need a few weeks off for good behaviour so does your dd.
yes you need everything like yesterday but not at your healths expense Lougle your no good to your dd ill , please have some rest and some fun for both your sakes.

Star, we are undergoing Core Assessment. DD1 is a danger to her siblings in her current state, due to her behaviours and the fact that I am on my own each afternoon, so can't protect them and deal with her at the same time. Added to that, we have no downstairs space at all which can be sectioned off (shoe-box house) and getting her upstairs is highly dangerous for us both.

The intended aim of the CA is to get us support PDQ. Eventually direct payments is the goal, but this close to the summer hols, they are impossible, because of CRB checks, etc. So it is looking like agency care worker or something.

SHIP is my life-saver. They are keeping me sane. But they are in direct conflict with the LD team, both idealogically and interventionally. They are fantastic though, and try to ensure that their advice does not conflict with the LD team, so that I am not in the middle.

The LD team are dedicated but ineffective. They have two interventions: Visual timetable (hollow laugh given the other thread I am up to my neck in) and 'quiet time'. Neither work. DD1 doesn't even use visuals at school, as she doesn't really need them (another hollow laugh). The LD team apparently have no other interventions, because their interventions work, and if only I could be consistent, it would be ok (but they feel that [given the fact DD1 regularly hits, kicks and has bitten the LD nurse], I cannot possibly be consistent until I have another pair of hands in the house each afternoon).

I can't ditch the LD team, because right now, they are part of the SS referral and we would be seen as rejecting assistance.

I can't ditch SHIP, they stop me walking out and not coming back.

I can't ditch SS because we desperately need help for.....ooh loooooookkkkk 2 weeks time

drivemecrazy, time off for good behaviour is the funniest thing I've read all night

Lougle, I wish I had a magic wand I could use to get the new house and respite sorted before the end of term. Your posts have kept me sane at times by helping me see the light at the end of the tunnel. Like others have said, well done to dd for being a nightmare in front of the right professional .

Does the high connors score mean that there might be medication for the adhd symptoms? If that isn't an option, even reading up about adhd would arm you to fight back against the suggesions that lack of consistency is stopping the 'quiet time' working. Because really, 'quiet time' is the last thing that will calm an adhd child down... it just sends them further and further into a frenzy as they desperately try to boost their brainwave level up to 'normal'.

Could the epilsy, or epiepsy meds, be exacerbating it? can the paed do anything? Thinking of you and and [tea] and hope something starts to improve very soon.

oh lougle, what a nightmare. we have ditched quite a lot of people and are less stressed for it.

we do still see sw, but only once every couple of months. they tried to make us have a meeting with a new person who is organising direct payments, but my dh just said no, and said she is to email us the info, there is no absolutely no need for a meeting.

the paed does a hv every 6 months.

apart from that, most other people we came in contact with were worse than useless, so we eventually realised we were better off without em.

but good luck with everything. its horrible when every week you have one or more meetings.

i stopped offering people tea, btw.

im serious I know its all so demanding ,I mean life with DCs and with ones with disabilities and SEN is hard enough , this circus we go throughs a nightmare everyones entitled to just say stop let us take a breath and have a few weeks off to recharge.
I know when I was where you are right now I felt we had no home life no privacy, no time to be a family while all this is going on, it was so depressing and really affected the other dcs too and my relationship with DH , or maybe its just me but it was really hard going, cant count the times I cried myself to sleep and cried wishing mum was still alive so I could talk to her, so if your feeling overwhelmed nothing wrong with a couple weeks off fib your going on holiday if you have to they can shedule around it. just a thought anyway .