Education/Family Support Worker Question

[AGlassHalfEmptyNoLonger]

Hi, am posting this both here and in Parenting as I will hopefully get help from both areas.

My ds (8, almost 9) is dyspraxic, query Aspergers/HFA (has definite traits, awaiting CAHMS to assess). I am having ongoing monthly meetings with the SENCo, and one of the things she has set up is for me to have support via the Family/Education Support Worker. I had a phone call today and she is going to come out for an initial meeting with me at home on Wednesday afternoon (weather permitting).

What I want to know is:
What should/shouldn't I say?
What should/shouldn't I ask for?
What can/can't she ask me?
Any other tips or words of advice you have.

Many thanks in advance

(Have occasionally posted previously as LRB978)

Say what you think is wrong, and emphasise the problems he has. It may be upsetting, so write everything down beforehand so you can get the crying out of your system.
Ask for everything that can possibly help, even if you think they'll never agree to it. If you don't ask, you don't get.

Good luck

digs CAF out

Thanks Purple. Most of it is covered in the CAF and I know she was in school on Thursday meeting the staff (she is new to the post, only started in the last couple of weeks) and spent a bit of time in ds's class. Think I got most of my crying out of the way just before half term, so that shouldnt be too much of an issue (I hope, dont wanna go there again, I spent 24 hours doing nothing but cry, or so it felt).

adds pyromania to CAF, along with sleep issues and a few other things that have cropped up since. Roll on Wednesday!

Dr Pidjin's prescription:

One large glass of the alcoholic/treat beverage of you choice

One large hot bath with lavender oil

One large slice of cake or chocolate bar

One DP/relative/friend to let themselves in early or stay over and take over the DCs for a couple of hours in the morning.

Repeat as necessary

Hmmmm...

alcohol - need to be careful cos am on various medications/treat beverage - I'm living on raspberryade when I can afford it :) (I'm not sure how I became addicted to it, but I am)

hot bath - when I have time, and preferably when ds is in bed, or I get constantly interrupted (or he creates mayhem)

cake or chocolate - when ds doesn't sniff it out and eat it before I get to it

One lousy xp (whole other thread)/family who help out when they can (approx 4 weekends of ds staying there a year)/friend (even more depressed than I am, but has him at least one afternoon a week, pus the odd overnight). Most mornings he wakes before me and takes himself off downstairs, which is fine until I wake up and find out what he's been doing in the meantime (paint in the bath ala 'Curious George', eating the sugar/cakes (a packet at a time)/biscuits (ditto)/anything else sweet/cheese (melted in the microwave for 30secs a time until it is just right) or anything which I am trying to save for something in particular, and anything he's found and has decided to try out, extremely impulsively and normally with interesting results)

TBH, most of the time I cope, but having broken earlier this term, I am now taking all the support offered, as I will do anything to prevent me getting to that point again. Tis just the constant of me and him, with 20hrs of work providing my sanity, especially now he's going for fire again (obsessed with firemen and being a fireman, including putting out fires and wondering what happens when this or that material is out in a flame!). The only thing I have in the house is a gas cooker and a lighter for the cooker, which I hide, but he has obviously found a few times (gets hidden in different places in a regular basis) - he lights the gas hob and then lights stuff from there. Am in contact with the local fire brigade to try and get help with him understanding the dangers, but am worried it will only last for so long, he has a habit of learning something, but then about 6 months later having to be retaught it, because he's trying it again, just to make sure things havent changed in the meantime (e.g. putting hand on over door when it is on - yes, it still gets hot six months later, and another six months later etc etc etc)

Anyway, this has turned into a ramble, it's late, I need to get to bed cos I have work again in the morning. Thanks for the replies pidjin, will let you know how it goes :)

Social Services can provide respite care, whether they take him for an afternoon a week, or for the weekend - it's a fun thing for him to do as well so not like handing him over to be locked away for a day or two DNiece's school TA's take her out for a few hours each weekend and she absolutely loves it - they do all sorts of stuff her mum wouldn't have the time/energy for.

Occupational Therapy have also provided safety equipment for the house, including a big fixed guard for the open fire. It could be worth looking into, perhaps for a lock for the kitchen or a particular cupboard? Seems a bit draconian but at least you could keep lighters etc safe.

I guess you've tried Social Stories? If not, google - they're fab for teaching rules and how to behave, and would be ideal for reinforcing fire safety

I am in the process of getting a couple of hours a week respite through a local voluntary group, and they are also referring me on for a buddy for me as well. They will do whatever I want with him, I have to pay expenses if they go somewhere that costs, which I'm fine with, as I would be paying for me if I was taking him, and if it doesn't cost (going to feed the ducks as an example) then it is free for me. I don't think I would get anything from SS, as he really isn't that bad, until you condense all the negative issues down into a single post/conversation (although he is my one and only, so a normal life for me may not be as normal as I think it is).

I hadn't thought of asking OT for help with that - he has just been discharged but I can get advice/support/refer him back into the service within a year without a new referral. I have used a lock on the kitchen and on a cupboard before, but he managed to get into them anyway (learn't where I kept the key/the number for the padlock) or just jammed it totally so I spent hours getting in myself). However that was pre-dx, I think I will try again this holiday now I know what I am dealing with (and have time to work out new tactics)

I haven't tried social stories, because up to now I have taught myself tricks or learnt how to deal with him in different situations. But the dx is relatively new, the last 18 months have been a rollercoaster, and I am still getting to grips with things to use and when to use them. Having said that, to be dx'd at his age, he is not severe enough to have stood out before now, so that is a bonus. He is socially and emotionally at least a couple of years behind his actual age, but again, that is 'normal' to me, and only now becoming apparent to those around him.

(Easter 2009 I moved him schools, knowing he was struggling in class, but nothing else. He has since been internally assessed, externally assessed, put on SA+, dx'd dyspraxia by a pead, referred to, assessed by and had 10 1-1 sessions with OT, 5 on sensory issues, 5 on classroom support), and now I am on monthly meetings with the SENCo, trying to get CAHMS to come in and assess him for ASD, looking at statementing him, and all with no support from his father, and little support from my family! No wonder I broke at half term!)

Thanks for the advice/suggestions, will google social stories and see if I can get something for him and fire safety. I think the biggest issue is he sees me lighting the cooker and cooking on it, so doesn't see it as dangerous in the way he knows a bonfire to be dangerous. I will try and find something though.

Quick update, due to weather am now having meeting on the 4th Jan, not surprising given the snowfall and lack of grit today (okay, we're not talking feet, but had I not been told I had to make every effort to get to work I wouldnt have left the house today)