Just a quick update re: DD1, clobazam and pre-school...

[lou031205]

Yesterday was a fairly disastrous one, to be blunt.

Just a quick recap: Since getting the statement, all support seems to have dropped out of the horizon. Everyone saying it is everyone else's job, except Portage who are fab. Meanwhile, DD1's consultant started her on Clobazam because of poss night seizures.

Update: Having phoned the LA last week, and them not phoning back, I phoned for a progress report.

The Special school can't take DD1 early - they are full and can't take before school age anyway. BUT they have an outreach teacher, and she is going to visit preschool to offer support, and get to know DD1.

Portage phoned after visiting the preschool, and it is not good news. They agree that it is going badly wrong. To the point of weighing up what is more damaging - pulling her now, and having her at home for the next 14 weeks before school starts or keeping her in the preschool. They aren't seeming to follow any of the strategies given by portage. When asked for her 'special box' of fiddle toys, they were at the back of the store cupboard.

Portage was very concerned about how extremely wobbly DD1 was, and how 'spaced out'. Given that she was due to increase her Clobazam again tonight, she said that she thought I should phone her Paed. On speaking to him, we agreed that we are stopping the Clobazam. Wean for 3 days then stop completely. We'll see what the EEG shows.

So all in all, feeling like an awful mother, because she has to endure another 135 hours of inappropriate provision

Poor DD, and poor you x

Maybe Portage having been in will make them buck their ideas up a bit.

oh lord, sorry to hear that things have gone so tits-up at pre=school, such that portage are unhappy. please don't feel guilty - if pre-school can't manage, and SS is full, and LA won't find an appropriate placement, what more can you do?

It really is difficult.

Today, DD1 wouldn't let me leave. She was all over the place, high as a kite. I presume it was a little bit of rebound from the Clobazam dose stepping down. So I stayed for about 30 minutes. Preschool supervisor asked me to come back at 11 because of tidy-up time (usual flare-time for DD1). I was more than happy to do that. But the SENCO, who leaves tomorrow, said no, she thought they should see how they go and call me if they needed me. So the leader changed her mind .

In the meantime, Portage phoned to say that the Early years advisory teacher (Didn't know they even had one!!!!!) is going to go in as soon as possible to see what strategies the PS have.

I am relieved that they are taking it all so seriously, but that the placement had to fail and degenerate to a worrying level before anything is done.

sounds like even staff can't take a unite approach...

how was today?

Thanks for asking TC.

Today was sad, but OK. DD1's SENCO/1:1 has left. I have been telling DD1 all week, but DD1 said "She'll be here tomorrow". I said that there was no more Mrs x, but then DD1 said "She can come whenever she wants!" Which is very very nice, but not going to happen.

DD1 is gettting back to normal. Last dose of CLobazam tonight.

lou- how often does portage go in? could they go in more often?, dd2's portage worker goes into nursery once a week and at home once a week (we are only getting this due to some trial with extra visits), our portage worker is also dd2's best source of help, she gives the nursery great advice and checks that they are carrying it out.

Could you cut her hours at nursery/playgroup?

You are not a awful mum, you are great, its bloody hard work bringing up a child with SN and you are doing a great job.

Hi Marne

Because DD1 has 14 hours at preschool, she isn't entitled to Portage at home. She is only entitled to 'Portage Outreach'. Which means that they go into preschool, normally once per half-term.

Having said that, I can phone the Portage worker in between if necessary. I get the impression that she is fairly horrified at the situation - she has been working behind the scenes to arrange for an advisory teacher to visit the preschool (NOT the Portage worker's job, but the woman whose job it is hasn't done it).

The Portage worker has given great strategies, but the preschool aren't doing it. Visual timetable was just stuck up without being used. Not even sure if it is up now.

Transition sticks were another thing suggested - not done. I could go on.

I suppose I could cut her hours at preschool, but to be honest, with 3 under 5 and DD1 being so hard to deal with, I am drowning as it is

Thanks for the encouragement.