1st statement review tomorrow!!! do i ask for help????

[butty]

Hi all, finally back online again after being ill yet again, but this time i have a DX of chronic fatigue syndrome, but i'll get over it!!!

Anyway, i've got dylans first statement review tomorrow as done every 6 months whilst pre-school age.

Just really looking for advise from those of you whom have already been there and done it.

He hasn't really come on in the last 6 months apart from his walking and that is so unsteady that he has to permanently wear his new helmet.

In the report thay have sent me, they have made some suggestions of what implements to put in place and have stated that previous targets still havn't been met.

I was wondering if i could mention my struggles at home with him and if i could stress their about needing extra support at home.

i know that his pros will be there exept for pead, but i have been knocked back by social services for home support as they say he is too young for them too offer anything and i was hoping that this could open a few doors.

Has anyone else recieved extra help at home via the review progress.???

If so please advise what.

Many thanks in advance,

Butty.xxx

Sorry, no real advice, but you can't lose anyhting by mentioning how you are struggling

Hope it goes ok, let us know

xxx

Hi Anniebear,

thanks for your message. i suppose i am just thinking of stuff to mention tomorrow, as cant think of much since staement done.

My mum is coming with me and has stressed that i tell them that i have just been diagnosed with chronic fatigue syndrome amd that they need to arrange more help at home for me???

I dont think that is the sort of thing that they do, although on the form that i filled out a while ago relating to the review, it does ask about things that can be done to help at home, but i dont know if they mean educationally!!!???

I know that i will be questioning whether he gets a full time place in september as i think that is pretty important as it is his pre-school year.

anyway, i shall finish ranting for now

butty.xxx

No advice from me either but good luck

I would still mention it, you never know some one may say "I could have a word with ???? who works for???"

I think its terrible you have been knocked back for support especially as you are ill yourself

You could always put it in a way that might make sense to them. For instance, you need help to implement his communication system at home, to put in place visual timetables, learn signing, do worksheets. Anything you can think of and then say just why you can't do it at the moment and how difficult things are. Don't worry about whether you should or shouldn't say something, you're not paid to be there you can say what you bloody well like, whether it meets the usual criteria or not, and then ITS OUT THERE where it belongs. Make sure it goes in writing somewhere.

Thanks for your messages.

the review is at 1pm today, so i am going to write a list out this morning of some of the things that i would like to mention regarding the home situation and my recent DX, of which i have been told by my doctor can become quite debilitating at times, although i have suffered for the past 18 months and it does make me bedridden for at least 2 days, i never thought of it as being that serious until last nights appointment with him.

Its hard to handle dylan the majority of the time and last week in the half term the kids were shipped from pillar to post as i could not do anything!!!!

I will point this out at the review, and also davros, you mentioned communication!!! I have been going on at the salt for ages as as of yet they have done nothing, they just keep telling me i have to do makaton!!!! This would be all well and good, if i had a clue what half the signs were!!!!!

Butty.xxx

If you bring up all these things that you could/would do at home to support what goes on in school then I think it would make sense to them. At this review you may not be asking for help/support so you can have bed rest (although that should be perfectly acceptable to Soc Svs) but you can't possibly implement behaviour management, feeding programs, bathtime routines, timetables, communication etc without support. If you can get at it from that angle they may then feedback to Soc Svs and you can get support and do whatever you want with it!

No experience or advice about statementing but just wanted to wsh you good luck for this afternoon. :)

Thanks davros and coppertop,

I have made a list of things to mention, one being communication and the other about his mobility as at the moment it is very bad, but he is just too independant to not walk.

His walking is extremely unsteady and he is always falling over, of which gives me palpatations, even though he has a helmet that he wears at all times!!!! This morning he has managed to fall into my display cabinet and subsiquently has broke the skin on his nose bridge as well as having a nice purple raised bruise!!!!

They have not offered any support at home, but when he first recieved the statement last year, i was under the impression that the pros involved including salt and OT would be on hand to suggest things for home and offer advise and support, but the only one who contacts me frequently and calls round in her own time is his physio, who may i add is excellent!!!!

i dont know what to do anymore, as SS have point blank refused to help and the others just don't seem to have the time to help.

We had the OT round before Xmas about adaptions to the house due to the nature of his disabillities and to implement the things needed before they are needed, IYKWIM??? Also, she was meant to have arranged the Major buggy, but as of yet i have not heard a thing, and i keep leaving maessages for her, but she fails to return my calls.!!!

She will be there today, so i think i will be pointing a few things out, without being disruptive or rude!!!!

Butty.xxx

well guys, it was a total waste of time, not only did the SS and OT not show their faces, the whole thing seemed relentlessly pointless!!!!

They mainly spoke about communication and which way to move forward, it turned into an argument between the teacher and the SALT!!!!!

They have decided to introduce small amounts of makaton as well as PECS as they are very undecided about dylans speech ability????

He can say yes, no and go but all of which are very dodgy sounding. he is making lots of noises and has been doing for ages, so one is confident that he will speak eventually and the other is not?????

I then pointed out that it is here and now that we need to do something for his benefit as well as others involved with him!!!!

What if he doesn't speak??? They need to start him with other forms of communication now, not next year!!!!! Even if he does eventually speak, it will be good that he knows different forms of communication.

Regarding full time in september, they dont know as dont think they will have the space to do full time as limited spaces at the school.

I did ask about when he starts school what they thought about the chances of mainstream but they couldn't say, although personally, i feel he is too far behind already as dx'ed as 2 years delay!!!

My probs were left out of the equation as not really any relevance due to no SS.

On a good note, they said he is a happy and well determined little boy who brings a lot of joy to the class and others around him and that his walking is a great acheivement!!!

Butty.xxx