Sunday 24 February 2013

Haven't been on here for a couple of weeks...

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 dic 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...

Fun times...

Monday 4 February 2013

Last week was last week- what do we have this week?

So last week dinky got a communications book that was about as much use as a chocolate fireguard or trapdoor on a boat.
I went to a housing meeting to be told by everyone I met that dinky sounds autistic/aspergers.
I got a call from the mind advocate telling me I had a new MHN, but no appointment yet.
I went to the doc who told me that I was lucky as I wasn't on the streets, who said I wasn't depressed and then the screening came back as positive for depression! Genius these docs in this surgery.
So I'm full scale ranting in my head at the moment.

Feel free to stop reading as this could take a while....
Dinky's issues first...

To be honest I'm all over the place with dinky and her issues. All these people keep mentioning autism (high functioning end) and aspergers I even had one parent tell me to look up the difference in manifestations between male and female autism as some of the stuff I have said, I have said the teacher has said, she has seen herself, it makes sense.
The school are the ones who first flagged things up but the teacher is being so difficult to get on board.
It is like it is a massive chore for her to do a communications book for dinky. Today I was furious when I read the comment! I had been standing outside the class this morning because the door was open and no member of staff was nearby, so dinky could have gone and no one would have known until the register was taken. I was watching dinky with her 'friend'. All of a sudden dinky launched herself at this 'friend' punching her in the face and falling on her at the same time. The other kid was obviously upset and got the TA, who told dinky off and made her apologise. None of the staff knew I had seen this take place. However in the comms book all I have for the entire day is 'some lovely times'. Sure, there might have been some lovely times but don't you think I should be informed that my child punched another kid in the face? Surely that shows that she is aggressive in school too, when on the CAF form the physical aggression has been marked as being a home thing! It is things like this that mean she won't get the right help because no one will be able to say what is going on without the right information. Physical aggression in class is quite a major thing. Especially as last week I witnessed dinky push another child over and be reprimanded and I had to drag her away from a fight she was having with the same kid she punched today! Surely this counts as need to know? Right?
It's like anything else with the teacher. I had no idea dinky wouldn't participate in groups until I read in her reading diary 'dinky is becoming more compliant to come and read in a group now.' it actually seems I get more information from the home reading diary than I do from the comms book! Even today there is a longer entry in the reading diary! Maybe that is why the comms book entry is so small. I don't know... Who knows what the teacher is thinking. She is probably going to the first port of call when she looks at me and sees that I look about 17 (I'm being nice!) and wear jeans and a hoody with Nike air force ones, I don't exactly look very motherly. Maybe I should change my school wardrobe and wear some jeans, black shoes/ boots or nasty sketchers trainers, with some old persons cardigan and a coat from M&S? Maybe then it won't come down to a class/age/parenting perspective. The stupid thing is the deputy is brilliant and assures me she will do what is in dinkys best interests and can see it is not a parenting issue!
There was a time where I almost smacked the health visitor because she handed me a NSPCC leaflet about not smacking your children and about listening! It took for me to prove I had done the time out for years with little or no success, I tired reward charts to little or no success, and I tried removing dinkys favourite films and toys, again little or no success. Actually there was one point when I took all dinkys films and toys and she had nothing for 3 weeks but the normal tv which was restricted heavily. She didn't really seem to care. She just looked out of the window at the horses. I have tried positive parenting strategies, and I have tried picking battles. I have read book after book on managing behaviour in toddlers and preschoolers. Some bits from some books work, other books, not so much! They had to agree I had and was trying everything.
I am such an impatient person. Now I know there may be something wrong with dinky, I want an answer like tomorrow. I don't want to do the NHS/CAMHS waiting malarkey! I want to know what is wrong if anything and if there is, what they can do about it!
I guess I probably should look up autism in girls and see what it says. Maybe I can look closer at some situations and see if she fits or not.



My issues...
Well, what can I say. I just have to wait. The doctors where I am are rubbish though. Normally there is like a one doc per surgery that treats me like I'm 10 years old but almost every doc I see is as useless as the next and all seem to use varying degrees of condesending and patronising language toward me. Oh well. I'm lucky, its not as if I'm on the streets right? Sure because everyone on the streets have children too. It is not like if I didn't have dinky I would be on the streets either. Actually I would be a supervisor or higher for the only major sports shop (and don't include the shop that had to remove sports from its name as it was a sports wear company and not a sports company there is a difference!) in the country and would still have my own flat down by the south coast. The only reason I gave it up was because I had dinky! So that's crap. And no I'm not bloody lucky... What I'm lucky that we are in a hostel? That it is me and a hyperactive nearly 5 year old who has 'behavioural and emotional difficulties' in one room? Oh I'm lucky to have undiagnosed mental health issues with the latest being PTSD and the possibility of a mood disorder? Oh so lucky! Oh and I must be so lucky to have found a lump in my breast and have to go to 4 separate appointments and strip to the waist and have memories resurface of the sexual abuse I suffered for 2 years! Yeah I'm so bloody lucky! I ooze luck! So much so that the MHN I had made me feel worse and when I try to change nurses it takes over 2 months! So lucky! And on to of all that I get to go job hunting and have my already low self esteem pushed further back by not even getting one interview from 30 job applications!
Don't you wish you were as lucky as me?
Don't get me wrong I know what he was aiming for, and I've taken it slightly out of context. I guess it is hard for those on the streets but does that make it easier for me? I'm not saying that I have it worst off in the world. I could name millions of people worse off than myself. I just think it was a rather poor use of words and a poor use of his imagination.


This week there are no suitable houses to bid on (although I'm thinking about changing schools if this teacher situation doesn't get resolved soon!), I have a job centre interview for my jobseekers allowance on the 7th, I might pop into the school tomorrow and talk to the deputy about the contact book. That's about it really...

I just mustn't forget how lucky I am!

Saturday 2 February 2013

It's been an interesting couple of days... Complicated life seems such an apt name for this blog!

Maybe it's because I scored as depressed on the questionnaire or maybe it's because I'm extremely shattered, maybe it's because so much has happened or maybe it's all of it combined, but I haven't posted for a few days... So here it is...

Thursday I went to a housing meeting with a parents forum. I wasn't sure if I should be there. I was given the flyer by the deputy at dinky's school but it was for parents of kids with SEN (special educational needs). I went anyway. A Housing meeting was going to be interesting and if I had nothing to add, I had nothing to add.
Funnily enough the guest speakers from the local council Housing department didn't turn up! I'm not surprised by the reaction of some of the mums once they established the council were not coming, there was a woman from occupational therapy who was going to take questions and comments back to the council, and the poor woman got it from all angles.
One thing that came out time and time again was the councils within the whole county had the same issues. Their attitudes were bad, and the systems failed both adults and children who have disabilities or problems (including mental health).
I explained that dinky has only just been identified as SEN, but that I tried in vain to explain how much of a drastic effect moving us from one temporary accommodation to another would have on her. I was told to pack and move within 24 hours. This wasnt possible. I fought and got an extension for a few days. Even then I hadn't enough time to prepare dinky to move yet again and it did drastically effect her. Especially her behaviour. I spent weeks of being physically attacked and dealing with her meltdowns. So much so I went to the GP as I couldn't handle it. None of it mattered to the council officers.
Afterwards another mother approached and asked some questions about dinky and mentioned that her autistic son was just the same, and was dinky being assessed for autism. No, no she isn't.
Then a man approached me and told me he was from a project that offered play sessions for 5-10 year olds with SEN and disabilities. After hearing of my issues with dinky he would like to offer for dinky join the project and go to some sessions with other SEN children. I told him that dinky wasn't diagnosed with anything and he said "yes but with what you have said she will be. I've worked with kids like your daughter for 20 years."
It's good in the fact that there is a great place dinky can go but on the other hand everyone keeps telling me that there is more than a possibility my dinky is on the autism spectrum.

Friday...
Hmm, well. Friday was a very bad day for dinky.
First of all she had a fight with her friend. Well her on off friend according to the TA. The teacher just stood there. The student had to protect the other kid and I had to muscle my way past parents and kids piling into the tiny area that the fight was taking place. I grabbed hold of dinky and literally dragged her out of the classroom. She kept trying to get back in ago I had to hold her. She punched me and shoved me in front of the teacher who had come out. She ran off looking for the deputy. The welfare officer came in and tried to help. Then the deputy came. They told me to go. It is so hard to go when your kid is distressed, but I left.
I did some bits in town and then headed home. At 12.30 I got a call. I looked at my phone and it was the school. Filled with trepidation I answered. It was the deputy. She said that dinky had fallen over and another kid had picked her up and dinky said she hurt her arm. Apparently dinky hadn't used her arm for 2 hours and the deputy wanted to see what I wanted to do. There was no swelling or bruising and she didn't seem distressed at all. I said I'd pick her up and get it checked and would be there as soon as I could but it might take a while coming from the other side of town.
Well on my way to the school my phone rang again. I picked up, it was the deputy again. Dinky had made a miraculous recovery! She was fine. So I did some window shopping and picked her up at normal time.
Dinky ran off to play as soon as I picked her up. I tried to get her to come with me but she was having none of it. I asked her to hold my hand as we were about to go out of the gate and she ran off again. I went over to her and tried to calm her. She was a the point where she could go either way. Then she ran for it under the picnic table. I managed to get her to agree to come out under the table but she decided to go the side way and got herself stuck! That's when the welfare officer and the TA came out. The welfare officer said I was handling it fantastically but looked like I needed help. I told her dinky was stuck but I was fine. They stuck around anyway. Between myself and the TA we got her out and then the welfare officer spoke to dinky and she bolted again. Then another member of staff came out and was instructed to get the deputy. Dinky kicked water from the puddle she was in all over me. I got much sterner at that point. I had removed 3 minutes already but took another and demanded an apology for that.
She apologised and I managed to get her to come with me. The she ran for the gate. The deputy followed but kept her distance. Dinky ran straight up to a dog ad began stroking it. I tired to explain that I wanted to hold her hand for safety as she was running off and I needed to keep her safe and that was my job as her mummy. The deputy could see dinky was not paying me the slightest bit of attention and tried to help me explain.
Drained beyond belief I managed to get dinky to walk with me and she held my hand.
She was then fine on the bus and on the way home. She messed about a bit at home and went to bed uncharacteristically on time. Then again she spent most of her day being stubborn and running so she probably knackered herself out!


One thing that has wound me up this week that I haven't mentioned yet is the contact book.
After 3 people suggested the book and the teacher (begrudgingly) agreed to it, she hasn't exactly written anything to help me understand what she is like at school. Most of it is in direct relation to the new behaviour system dinky is on. Where she gets 5 minutes base level and gets one added for good behaviour and one taken for bad behaviour...So we have
Monday- 1 min- up and down today hopefully while she is getting used to it
Tuesday- am 9 mins- pm 6 mins- have decided to shorten the time that dinky needs to work for into 2 sessions morning and afternoon. Excellent morning/ good afternoon
Wednesday- am 2mins- pm 8mins- excellent effort all afternoon
Thursday -am 7mins- pm 4 mins- Found it more difficult this morning dipped right down to 2 mins before coming back up. Pm - bit tricky
Friday- am 4 mins- pm 4 mins- an up and down morning - an up and down afternoon too!


Os it just me or is that not very helpful at all! Thursday afternoon got me the most.. bit tricky... What does that mean? How does that help me understand anything?


Oh well, tomorrow is Sunday... Then back to business Monday morning!