It’s has been a strange few weeks and if I’m honest I’ve not been on top form, I’ve been slightly depressed and ill with flu. I’m not sure how I am at the moment except I have loads of paperwork to sort through and lots of appointments to go to and all I want is to bury my head in the sand.
Unfortunately that is not an option.
I’ve signed on to job seekers, the school senco has made out that all of dinkys problems are housing related, I still haven’t heard anything about a new MHN, Dinky turned 5 and I have been back to the docs about dinky and her behaviour having been told about a little known form of autism called PDA.
So first of all they had the CAF planning meeting. I wasn’t allowed to go because there were 6 children being discussed at this meeting. When I went to speak to the senco (also the deputy head and our lead professional) she said that CAMHS have said dinky probably won’t meet their criteria, that I should get in touch with a housing support service (which are pretty rubbish if the one I just told not to bother anymore are anything to go by) and that she will be doing a referral for the family link worker service. Which all sounds well and good except she also said that our issues are housing related so the team said that there is not much they could do and have I tried the rent deposit scheme. Urgh! Yes, the rent deposit scheme is all well and good if you can afford to pay £150 a month towards your rent even if you qualify for full housing benefit and continue to pay that £150 on top of whatever else you have to contribute when you work. Also you need a guarantor who earns over £30,000 a year and find a landlord that will accept those on income support or job seekers and a young child. I can safely say that the chances of me getting a guarantor are 0% and being able to afford £150 a month on benefit again 0% and finding a landlord who will take IS/JSA and a child next to zero. So yes I have tried that route and do they not think I would rather go private rent than live in a hostel? But I must be thick?
So a resounding flop on the senco’s part of I’m honest as if she used an ounce of common sense she would see that it has been 10 months and surely dinky would settle and adapt (as most kids do) not get worse the longer time goes on. The thing that gets me is no one has thought to ask dinky whether or not she likes it here. I have. She says she likes it a bit. I ask what she doesn’t like, she replies, the bumpy walls, referring to the wallpaper. Other than that she says she likes it here. She likes sharing a room with me and she likes the other kids that either live or visit here. So is it still housing related? I don’t think so anymore.
So with everyone telling me there is a problem with dinky and since she went on the SEN register I went looking for parents in the same position (roughly) as I find myself in with dinky. Funnily enough after explaining about dinky and posting some of the harder days with her one person private messaged me and told me I should have a look at PDA (pathological demand avoidance).
I almost laughed when I read the description, not only does it sum dinky up in a nut shell but also 75% of the criteria was in the referral to the family link worker service written by the senco.
It makes complete sense. At Playgroup they could not dissuade her from playing her own games, and could not persuade her to paint, or join in activities, well, not unless she wanted to. However they did mention that if they asked her to she wouldn’t, but if they told her it was available she was more likely to give it a go. She has got progressively worse at school, which makes sense because more and more demands are being made of her. The first half term was pretty much have fun while we work you out and then easing the kids into school life. Well for dinky it wasn’t very easy for her and she does avoid tasks in quite a dramatic fashion (normally running off and hiding or pretending to go to the toilet). Of course it could have been just me right? So I phoned my dad. I read the criteria and he said it was dinky 100%. I copied it out and showed the two people who keep saying that dinky shows autistic traits and they said it was spot on. I even went as far as showing the senco who agreed it fits dinky, although she says it still may not be the case which I don’t deny. I am not saying dinky definitely has PDA, but surely it is worth investigating.
Also in regards to the school the senco/lead professional/deputy, is arranging a TAC (team around the child) meeting for sometime in the next few weeks. So that should be entertaining. Especially if they refuse to listen and I have to photocopy dinkys behaviour diary that I have been keeping for the last 5 weeks. I think then they might start to pay attention to the fact that maybe all is not what it seems where dinky is concerned.
Dinky had her 5th birthday but unfortunately was ill. Which kind of sucks for her, but she had a good time.
As she turned 5 my income support ended and I’m now one of the thousands upon thousands if not millions of unemployed people in the country on JSA. Doing the online form was easy as anything, it was the fact I had to go to an appointment to finish the claim with dinky as it was half term then I had to sign on too with her there. Which wasn’t the easiest of tasks as it is very hard to have a discussion when dinky is bored and doesn’t want to sit in the seat.
Oh yes that’s right inbetween these job centre appointments I went to the doc about dinky, to see if the doc would refer her somewhere else seeing as CAMHS have pretty much said dinky doesn’t fit the criteria and I showed him the referral to the family link worker service and the criteria from the national autistic society and he said it was worth investigating as dinky was hiding under the table with the curtains drawn. She also jumped on the bed, pulled the blinds, tried to leave the room and hit me in front of the doc because I said the school can’t handle her behaviour.
He said he wasn’t sure of the best place to send us so he made an appointment without dinky there for Tuesday and he is going to speak to the practice partner (who did dinkys CAMHS referral) and ask her opinion.
So I have to wait until Tuesday for that one…
Other than that… Yes it has been fun.. Oh and it is inset day tomorrow so I’m taking dinky up to the soft play centre for a bit…