Think i might just give up!

[bonkerz]

Its all too much right now.

Today topped it all being told by SENA that DSs problems are my fault and the PRU told me they know what DS needs better than me.

Maybe i am fighting a losing battle. Feel the lowest i have felt in ages today.

Marriage is really strugglng under this strain. Finances are in a bad place and it looks like we may have to get rid of my car Thursday cos cant afford to get it fixed. No car means no life (live in viallage crap public transport) Also means i cant get DS when he is kicked out on exclusion or take DS to appointments as all a good 30 min drive away.

Want to just grab my kids and run TBH, dont have the energy to fight for DS AND for my marriage.

Ds is the perfect example of how meeting a childs needs even without a dx can make a huge difference. It makes me so angry that so many of us parents have to fight every step of the way to get our children the support they need

I've been lucky the last 3 years in that his current school are fab and his current LEA rep is very supportive too and has written a great statement for him. I'm a bit dubious about his transition to middle school in sept though. They have a good rep for SN but seem to be dragging their heels about visits and ds meeting his TAs etc which needs to be done this term as its written into his statement. I think they are a bit arrogant tbh and assume they know everything already and have nothing to gain by finding out from his current school which strategies they have found useful etc. Hey Ho I could be wrong but I forsee some battles ahead for me

Its just constant isnt it! Just as one battle is over and you think you can relax another one comes along and bites oyu in the bum!

There are huge changes a foot at SENDIST from November 3rd. I am trying to find out more about it but basically, it gives the LEA more power at Tribunals over parents. For those parents without legal representation it will be more difficult.

Bonkerz, if you are able to give me an email address, I can send you what I have received so far and I will keep you updated. I do not have CAT I am afraid.

Mind you, if your Hearing is before November 3rd, you should not be affected.

Opps! Just seen, yours is September 16th so no worries.

had social services turn up today unannounced to discuss some respite care arrangements! My local autism outreach had referred and it looks like we may get 2 weeks in a playscheme at a special school so lots of support and then they mentioned funding 2 days respite with a specialist childminder for the rest of the summer holidays! They are going to sort that out immediately and are coming back next week to conducty a full child in need meeting to look at long term support for us!
Its weird because until just recently i was scared to ask for help but now with my marriage falling apart and my depression setting it im releaved finally we are getting help and realise its not becasue im failing but because im strong enough to admit i need help!

now that sounds like a promising start, tis a shame that things have to get so bad before action/services are offered thou.

to be fair the social services lady did say that when she was passed the case she vaguely recognised the names etc and finally said she remembered having a chat with PRU teacher about me and DS but the impression she got from teacher was that i was over reacting to a bad situation! Upon having a chat for an hour she left saying she couldnt believe i had gone so long without support and apologised for not getting in touch sooner!!!! She also said she would write a letter of support to SENDIST saying DS would be better in a special school and it would be better for family as a whole that this happens!

we kinda get used to muddling throu this all on our own thou don't we it becomes our "normal"
think how much it would cost the department if they don't offer the right support to enable us to manage.
we only ever asked for anything when Steve was poorly and even then we only started on 8 hours per month direct payments per child we get 28 hours amonth now but i am sure they will reduce that as soon as they can.
do you get direct payments?

no and im not sure how it will work to be honest. For the immediate holidays its been agreed there is need and autism outreach and social services are prepared to work together to meet the cost and then long term need is being looked at next week. I need to think how i can be helped and what sort of things i think DS could find useful. I think it will be direct payments really though as when DS is at school the most imprtant thing for us it to have someone else around when DH is working every weekend.

glad SS are stepping in and providing support over summer.

have parents morning at PRU tomorrow, Am dreading having to be nice to them and pretending everything is good with them. Even told them i couldnt make it due to no transport but they are sending a taxi! DARN IT!!!

How nice to send a taxi!

Am a bad mummy today. Its the carnival in our village today but DS has been 'simmering' all morning IYKWIM. He has been close to boiling point a few times and i know all the noise and people will push him over the edge if i took him to the carnival. Dh is working so im alone with DS and DD and know i will struggle to contain him if he kicks off. Ive blamed the weather and told a small lie that i feel poorly. Obviously he doesnt give a damn about me being ill and is cross he cant go to carnival but i reckon ive distracted him by offering 2 hours of non stop TV of his choice! He is now sat in front of TV watching Doctor Who on Demand and i know he wont move till carnival is over!
Im so crap!

Sensible mum more like. In actual fact you have judged a situation and deemed it in your child's best interests not to go. Any way its a bit wet (although as you can see from Wimbledon - its kind of holding off at the mo down here).

Glad you are getting something sorted out for the summer - more evidence as well for you.

There is light at the end of the tunnel bonkerz you might not see it yet but it is there. Did you manage to keep smiling at the PRU open day?

Smiled all the way through PRU day! Even managed to knock teacher down a peg when she started contradicting what i had said about DS being flexible (all with a smile ofcourse!) I could tell she wanted me gone and was only to happy to oblige! they really do contradict themselves. DSs teacher tries to tell me DS is fine and great and there is nothing wrong with him BUT then also said she knows he is going to struggle when they go for their outing on Tuesday and expects him to not cope in crowds or with the waiting around!!! She said she was worried about him running off too!!! STRANGE!!! Especially when she says there is nothing wrong with him!!!
Despite the frosty atmosphere DSs report is as expected! Written all over it is positive stuff about his academic achievement and how he is achieveing well above the national average! It will probably sound strange but i dont feel over joyed about it or feel i have to show off about it because i know DS is clever and am more concerned with his behaviour etc! OBVIOUSLY ive praised DS and he is getting a cinema treat on Thursday after school to celebrate.

Definately think i made the best choice today though with regards the carnival! Ds happily sat through 2 eposiodes of Dr Who and i got a 30 minute nap on sofa whilst DD slept!

well DLA refused our reassessment for higher car and higher mobility. Apparently they paid alot of attention to the fact that a year ago in my statement advice i wrote that DS was sleeping well and didnt wet bed! I had made a point of explaining it was a YEAR AGO i wrote that avice and that things had changed alot since then! Have also just been told that high rate mobility is only for children who cannot physically walk and have a physical disibility which i know is not technically true and i know DS disability is now meaning he is housebound without full time support when he is out.

Social services are due in a minute too but they have rang and confirmed they will fund 2 days a week with a specialist childminder over the summer!!! Am going to see if they will write a letter to confirm how much help DS needs etc.

Hope it goes well with the SS visit, glad you are being offered some support over summer. Pity about the DLA, can you appeal?

have asked them to reassess the DLA and have 28 days to porvide extra information and SS will write to them too so will autism outreach which will help alot.
Child in need meeting was fine, hard going cos i had to start from beginning and explain everything, got emotional but it was ok. Have now got 2 days a week with childminder 10-4 starting next week and also have 2 weeks in a play scheme 10-3 so will have some free time over hols to spend with DD and DSD and DS will be looked after and enjoying himself too. It really takes the pressure off knowing he has these days organised cos now i dont feel so guilty about not being able to do very much!
Am off for a lay down now before DS gets home cos im feeling drained and have said i will take DS to cinema later to see kung fu panda!!

Hey Bonkerz. Don't think you'll have any joy with the higher mobility until the ADOS is done because you have to satisfy the 'arrested or incomplete development of the brain' bit, and only an official autism dx will give you the evidence for that (as DWP now accept that autism meets criteria for this). B would meet the other criteria such as extreme behaviour but you might also have the problem that I've had even with the autism dx that they have to have a condition that leads to 'impaired intelligence'. My point is that the autism leads to lack of useful intelligence, as he has no awareness of danger etc., and am hoping that they will see the sense of this. But for you, before the dx, it might be worth holding of until you have the results of the ADOS and a dx, as higher mobility will be difficult without it. Hope you're OK xx Great about SS support.

cheers for that givemesleep, we have the ADOS and ADI-R test end of this month and results within 10 days so it all fits in the 28 days JUST! will hold out to send the extra info!

Good timing then, I guess...in that sick, messed-up way...would have been better a year ago, but at least it's going to happen x

We have DLA appeal in September. CAMHS consultant is backing me up, as is school, but they're being muppets as ever - clearly written into DLA worker job description.