Christmas and into the new year

I have been utterly useless at blogging lately. I have been having problems sleeping and Dinky has been a bit stressed with Christmas.

But I must say, Christmas actually went very well!

I thought back to last year and found that opening presents and dinner were the two biggest flashpoints. So I talked to my dad and told him that presents will be done without photos or any indication of what she should open when, we will leave it all to Dinky. Then dinner, I asked Dinky what she wanted and she chose nuggets (surprise surprise) with veg and a Yorkshire pudding. So come Christmas morning we left her to it, and Dinky calmly opened all her presents, although she did leave all the ones that weren’t disney infinity characters for hours before looking at them. Which is fine, she was happy, and that’s all that mattered.
Come dinner time she sat down and had her nuggets, no issues, this year dad didn’t say anything to her about eating, and she finished the lot!

Bedtime was a tad stressful as it is every night, but she did very well!

Since then I have been trying to set things up for 2015.

Dinky’s personal budget is nearly ready, it is slightly delayed because I did all the bits the form requested except sign it… D’oh! But it is done now and sent back off, the care plan is being drawn up and I’ve met with the people who help with getting the 1:1 and all the employment stuff.
While paperwork doesn’t phase me, I think I may have to alter who has her. The current 1:1 does some things without my approval which I don’t like, such as taking Dinky to the bank or to do her own food shopping. This is NOT ok because the money she is paid is to take her where Dinky wants to go, not to run her own personal errands. Also this morning dinky told me that she hid because her 1:1’s boyfriend was shouting at her 1:1. I don’t think that is appropriate and it isn’t the first time.
So if I’m going to change the person I might aswell find a child minder who works weekends, and then I don’t have to do the paperwork, and I don’t have to pay for employers liability insurance, business use car insurance for the 1:1, I am not responsible for National insurance or tax, sick pay or maternity pay, I don’t have to pay holiday pay… All that money saved will pay for more sensory equipment ect. So win win. Dinky isn’t actually bothered about losing her 1:1 person as she will still see them at the special needs group, as she is fed up of going to places to run errands without prior warning.

So that’s something.

I have found manual driving lessons ok, but a knee problem means I’m going to switch to automatic driving lessons in the new year. So by Dinky’s birthday in February I *should* have either passed my test, or waiting for a test date (sometimes it be be upto 8 weeks for a driving test, which would take me just past Dinky’s birthday)

Dinky may be starting school on the 12th of January, although this hasn’t been confirmed, her school placement has been confirmed at the special school with a 1:1.

So I have been talking a lot about the school. Her pictures from the assessment days are still up and she seems excited. I have made lots of comments about how the special school is so different from the two mainstreams she has been in, and how much better they will look after her there.
I received a massive pack of booklets from the school which includes a behaviour policy booklet.
I cried with happiness reading it, which sounds odd, but it is the complete opposite of the behaviour ‘plan’ dinky had at the mainstream. Theirs was all ‘if she chooses to misbehave she will be punished’, and ‘disruptive behaviour will not be tolerated’… Whereas the special school says they understand that learners are not always in control of their actions, that punishments were not to be harsh, and must make sense to the learner, using restorative justice, so if a child spills something on the floor on purpose, the punishment will be to clean it up themselves. All punishments for unsatisfactory behaviour will be agreed with the learner so they understand the consequences of their actions and are included in that.

2015 won’t be plagued with calls from the school saying she is being sent home for stupid things like walking on bucket stilts or trying to escape by climbing over the fence.

2014 has been a rough year for us.

Stressful doesn’t begin to cover it, with the school and them calling social serivces, and then removing Dinky. The whole statement of SEN process which took nearly twice the legislated time, delays and muppetry. The head of the SEN team found out that I’m not one for making friends, I’m more the pain in the backside parent, who wants what is best for their child and therefore won’t let my bundle of awesomeness to end up at a school that can’t meet her needs! Nearing 11 months out of school- which has been nice in a way but also majorly exhausting.
Finally getting the diagnosis for Dinky that I had known would be the case for 2 and a half years before her diagnosis was finalised. However then it became a nightmare trying to get the ADHD assessment done, which still hasn’t been done, and now we have the dyspraxia question mark again due to Dinky’s frequent ‘clumsiness’, the school assessment picked up how often she seemed to have these little accidents, falling over, bumping herself on random pieces of equipment… We shall see about that one… My cousin has a diagnosis of dyspraxia, so it is in the family.

So 2015 will see Dinky in a new school, have a new person to spend a few hours with at weekends, an ADHD assessment, me driving, and us moving to a house with a garden!

I wish you all the best for 2015!

Thank you for reading my blog!

Family, personal budgets, and waiting….

There hasn’t really been that much going on in terms of Dinky herself. She is currently calm and happy for the most part with flashes of meltdowns due to still having PDA, but 10 months out of the school environment has really helped her.

She is currently, massively into her lego and her disney infinity.

We have recently been back in contact with my brother, his partner and their 2 kids. We have even been up to see them, which is great because I hadn’t met my younger nephew.
The kids are 4 and 2 years old. It really struck me during our visit how alike the 4 year old and almost 7 year old Dinky are in terms of language, social skills and understanding.

There was a little drama (as there ALWAYS is where my family are concerned, this time it was…) about Dinky’s diagnosis. Apparently she isn’t autistic. I’m making it up.

Sure, the three paediatricians, two speech and language therapists, educational psychologist, social communication schools team, occupational therapist, and the special school and their teacher, speech and language therapist and occupational therapist… All of them, must be wrong because my mother and older sister, who haven’t seen either of us for nearly 5 years say so.

At first I was angry beyond all belief! I wanted to send my mother the details for the people who have seen dinky so she could phone them herself. However that probably wasn’t the intent behind what she said. The point was to further discredit me and make me sound horrible so that my brother and younger sister won’t see us. She likes everyone hating us (us being myself and my dad), why? You’d have to ask her, but even then you won’t get a straight answer as she is manipulative, selfish and an abhorrent human being.

So after my few hours of wanting revenge or to prove myself to her, I realised that just like with everything else with her I need to put it in the ‘no explanations for crazy’ box. Instantly I felt lighter.

Yesterday we had the social worker round to discuss the personal budget for Dinky. I don’t know why we had to wait a week, it could have been done on the phone.

They have awarded a sum of money, as it works out, there is enough for 4 hours respite a week term time, and 9 hours a week in the school holidays. There is enough to renew her merlin pass, and buy some sensory equipment and the rest is going to sit in the area we termed as ‘accessing the community’, which could mean any day trips, or special needs events can come out of her personal budget.

I was surprised that they awarded so much to be honest. However I’m not going to argue! The social worker told me that once the care plan is created we are to be moved under a new team, the one I have constantly said should be set up and finally is! You see, in our area we have the child disability team or child in need. Child in need is generally for children who need to be kept an eye on short term as they just fall short of child protection, and the child disability team, should actually be called the severe learning disabilities team as 90% of our counties disabled children wouldn’t meet their criteria.
So a new team will sit between them taking on the children too ‘complex’ for mainstream or even short breaks, but who are also above the 70 IQ remit for the CDT.

I’m disappointed in having yet ANOTHER social worker, but hopefully it won’t make too much of a difference once dinky is at school and the personal budget is set up as there will be nothing we need them to help with regularly, it will just be updating the care plan.

So another win for children in our area!

As for the school placement and the ADHD assessment from CAMHS, we are STILL waiting for answers and are no further forward on either front.

The LEA are ignoring emails and messages, from both myself and the social worker.
CAMHS are a law unto themselves- it has been 6 months since Dinky’s diagnosis, therefore the same amount of time that her ADHD assessment has been pending. At the moment I just want to say ‘no, have it your way, we won’t have the adhd assessment as it is not the main issue with Dinky and once she is in a school environment again, they can give up to date info on the possibility of ADHD rather than rely on a school who haven’t seen her for 10 months and couldn’t tell she was autistic or concede that PDA was the issue not me.’ However the social worker wasn’t in favour of that way forward and is going to chase them too.

So forever waiting…. As is the life of a parent to an awesome child with special needs!