'I would rather decisions on spending were made by me - or at least by my GP, or any actual doctors and medical professionals I am dealing with'
I am sorry it took mea ges to respond after my first post matie, ahd things to do.
OK am onl;y going to speak for me here.
Why wouldn't I want that budget?
Well,neither of my lads is as demanding as Riven's DD2 (I have met her btw, lovely child) but because in part I have two, and just because SN is like it, I basically work a 20 hour day into which I have to cram all the family stuff, the extra SN bits and also I am trying to do an MA and falling behind rapidly.
So frankly, I don't want any more on my plate- not the spending perhaps, but the getting qyuotes, dealing with staff etc etc etc
There is another issue here: Likely it would be dealt with by SN SSD who already deal with DP's .Well, locally SSD has decided that DS1 has a DX that doesn't constitute a disability so I cannot access anything. We do get DLA (at the highest rate, somewhat ironically I feel) but everyuthing else is barred to us. I am trying to get an assessment for myself and ds3 who is technically more severe, but am stuck on a wait list and have been since his DX in March (they are 6 and almost 10 btw, the only support we've ever had is a much appreciated 8 sessions from a NAS volunteer).
My ds1 has Asperger's. Aspergers in some people is quite close to the cut off between quirky and ASD- well something has to be the line doesn't it? IN ds1 though it presents with severe aggression (3 times knocked out this year, me), eating issues that mean he has failed to hit 4 stone so far, learning issues, problems at school(we think we found a specialist comp place for him fingers crossed).
DS1's has hurt the borthers in the past so now we check him regularly all night- actually I stay awake most of the night listening as I worry, he doesn't sleep until midnight anyway. Fortunately he doesn't wake until 8 but sadly for me, ds3 wakes at 5 or 6. ASD body clocks vary too bloody much LOL.
Everything is comoplicated for us; a school run alone means a nightmare of managing a buggy and a ds3 who runs away and is extremely hyepractive (his SNU taxi drops him outside school before I collect the others). Trips out shopping with the boysa re only attempted with 2 adults which has to be DH and I as nobody else lives close. In the summer Dh nipped into a shop and left me alone in a quiet town (Monmouth) and ds3 is only still alive from ds2's quick thinking as he darted out under a 4X4 and ds2 grabbed him, ds3 can open any reins we try so I am petrified what will happen.
Tomorrow Dh and I go out childless,for the first timein 3 years. A long time really.
I can't work despite graduating in 2008 as I have no chance of decent or suitable after school care and have to meet taxi's from ds3's SNU.
DH is well atm but became very seriously depressed which almost cost him his life post DS1's dx.
So you see, I amy be selfish but I don'twant a system that will likley exclude us even more from the things we do already have- SALT, OT etc.I don't want that as I will not be classed as having a disabled child by the SSD.
And I know I am not rare, I am doing my MA in ASD and the lady from the NAS says it is common.
I also think that when people are sorting these services is the same time as they get a DX, I can't explain the pain of a DX to someone who hasn't been there (I have no idea of your background) but although there is much wor4se out tehre, it is horrid, a realphysical pain and a constant never leaving fear about the future.
Not a time to be ahnded a few quid and told to go shop for what you need IMO.
Sorry I bet that doesn't make sense. DS1 stimming and hard to concentrate.