Frustrating times

Last Friday I received Dinky’s proposed statement.

I spent most of the weekend trying to make sense of it, and work out what needs to be done to make it work for Dinky.

Then my dad told me about a poor dog that needed to be rehomed. Then he told Dinky. So we went to collect the dog on Monday. The poor thing was the runt and was living with 8 other dogs, she had a scar on her eye from her sister and really needed to be removed from the environment.

She is a really good dog, Dinky and Dog have really hit it off. The pair of them are really cute together and there is nothing Dog likes more than napping on Dinky’s legs on the floor!

So why so frustrated?

Well, its not the dog.

I had started to write notes on what is wrong with the statement in my eyes, and it is really frustrating as the people that write them are just piecing bits together from the information that are in the pages of ‘advice’. There were a few things that I didn’t agree with and lots of things that were just not specific enough, to the point where if I took away all the provision that says ‘access to’, ‘regularly’, ‘would benefit from’ ect, all that would be left is a handful of PDA strategies and the idea that somehow BESD style would be best.

So I had my work cut out. I had to go through all the advice and see what was in there that hadn’t made it into part 2 of the statement, which wasn’t a lot, but I wrote it all down. Then going through part 2 and rewording things they had misunderstood, and making sure every time BESD or behaviour was mentioned I highlighted that the behavioural difficulties do not occur spontaneously, that they stem directly from the anxiety and need for control which are part of her PDA-ASD.

Part 3, I continued to reword the bits that mentioned behavioural difficulties. I pulled them up on all their non specific language and requested to know exactly what she should be getting. For example they had

Additional support during transitions

so I asked them to clarify what type of support? E.g. Visual timetables, now and next, social stories, ect. Who would be responsible for ensuring this happens? TA, LSA, Teacher?

It was really frustrating that the person that wrote the statement really did not understand the advice in front of them.

 

The social worker contacted me and let me know she has finished her assessment, and that we don’t qualify for any support as she is not a child in need, and there are absolutely no child protection issues.

I tried to phone our local child services to be put through to the child disability team but was told that the assessment was due to be closed, but hadn’t been closed yet, so we would have to wait, our case would be dealt with at CAF level.

So I spoke to the CAF lead who came out today.

Dinky was NOT happy AT all about us talking. She was interrupting, going off on long one sided conversations about Lego and her new dog. The Dog was jumping all over the Lead professional, so I put her in her crate, but Dinky took her out again.

Dinky then wanted to play and I was jumped on, headbutted, punched, kicked and slapped. Dinky was not happy. The muppet thought it would be a good idea to tell dinky to stop. Dinky then went into her tent for a few minutes. After a while of trying to talk to the lead and stop dinky from attacking me and trying to stop the dog from getting on the sofa I had enough. Dinky grabbed a DVD and shoved it in my face, I took it and slammed it down on my foot stool, and said “ENOUGH!”, which scared Dinky, then the lead said that things had progressed well since starting the CAF,  having a proposed statement and Dinky’s assessment in 2 months. I went off on one (verbally of course). I hugged Dinky, and told the lead I did it all on my own, everyone said “We want to help”, but no one has offered any practical help apart from the SN group leader who takes Dinky out once a month for 2.5 hours. I researched, did all the paperwork, requested the relevant appointments with relevant people, and fought the school by myself because no one would stand up to them when they refused to take any advice from anyone! I fought for things to get moving with the CDC, I kept on top of things, questioned things when they weren’t right, did anyone help? no. I did that, on my own. Since December Dinky has been home pretty much full time and I still fought for everything while fending off attacks. So it wasn’t the CAF!

I told her I am not superwoman, I cant fly and handle everything at once! Her reply… “you do sometimes blow hot and cold with professionals”. I told her that she should put herself in my shoes, I have Dinky who has been refusing melatonin for a while and recently not going to sleep until 1am, a social services assessment was taking place, Dinky is not at school because they cant admit they are wrong, our CAF is a paperwork exercise, I have been battling to get Dinky’s assessment sorted so people like your boss cant say ‘its only provisional why should anyone help?’, I have been trying to get the statement sorted- chasing reports, keeping on top of things, and then going thorough the statement who seem to think Dinky has BESD, which is not the case as all of her so call behavioural difficulties, emotional difficulties and social difficulties are due to her PDA, and before you say it is only provisional, the paediatrician is certain this will be her diagnosis when the assessment is complete. So yes, when professionals say they wont support us anymore, or they cant help, I go cold on them, I don’t see the point in allowing them to come round and disrupt Dinky at home while I take the physical abuse and deal with the fall out just so they can wrap things up and forget us! Not likely. If they do end up back involved, then they need to re earn my trust. I also try to calm down and see things from another point of view, but I cant help getting frustrated. I am not superwoman.

I cried, dinky got upset because I was upset, the dog joined us for a hug and the lead was writing on her notepad.

We took the dog out for a walk, Dinky ran off as I let her off her wrist reins on the field, and then refused to move, the lead thought she would help and Dinky just pretended to be asleep. She couldn’t get Dinky to move. It was actually quite funny to watch. Once I got Dinky up and moving, I explained that this was one of her favourite avoidance strategies, you can try and reason with no, not that it will help, but you can try, but no one can reason with pretend sleeping!

I love Dinky SO much!

It took a bit of gentle persuasion to get Dinky to walk the dog while the woman left.

When we got back Dinky found her phone. So I let her know it was at my house.

When she came to collect it she said that we wouldn’t qualify for CDT and that there is nothing available other than the CAF. I said that to us it was just a paperwork exercise that hasn’t got us anywhere. She said that she wont give up on us this time, but everyone she spoke to this afternoon had said that I will get the respite when Dinky is in education, so that is the focus.

Poor Dinky could sense I was frustrated and upset and was on edge and a bit of a hyper pickle, but she has really tried this evening bless her.

So yes, a very frustrating time.

I WILL make sure things get done in the end! (Just need to refrain from having a nervous breakdown in the meantime!)

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