Handed over to a new social care team

Today I had a meeting with the social worker and the new child and family worker. 

Not everyone gets a 1 hour hand over but I kind of went all panicky at another change in person when I found out that we were moving to a new team. 

Only because I heard it from a random source and had no idea what would happen.

Since I found out, the social worker told me a bit more and I felt better. Then I went to a parent carer event and saw the team manager, and I knew her, she came out to do an assessment for respite, and everytime I see her at events she asks how Dinky is doing and apologises for not being able to help. 

So we had the handover today. 

I thanked the social worker for her help, she has been good for us- actually- that team, from the moment they were involved things started gaining momentum… When they turned up I had pulled Dinky out of school the first time because they couldn’t tell me how they were meeting her needs- it was an impulsive and stupid thing to do looking back. I was just so stressed out and fed up of being right and yet watching them pound my square peg into their round hole- they were damaging her convinced she was a round peg that was just at the wrong angle. We had no formal diagnosis, just the provisional diagnosis. We had only just had the statutory assessment agreed. 

I was in fight mode and the social worker met that with understanding and did her best to get the bigger picture. She could have done the easy thing and listened to the school and blamed me- however she spoke to the paediatrician, to the special needs group leader, the integrated services woman, and Dinky herself. 

She spoke to me at length and the report was hard to read where the schools comments were added, but I was totally backed by everyone else. It was the first time unfelt I wasn’t fighting everyone. School were not happy, they made things very difficult so I tool Dinky out again but for good this time! 

The social worker backed me. Parents don’t usually go to the mapping meetings but the social worker said I was a fantastic advocate and understood the situation. She said that I was the best person to explain my decision and her boss would be there, the one who wanted to sign Dinky off leaving us with no support. The boss lady wasn’t happy with me saying “she will go back to ‘X’ school over my dead cold lifeless body!” But they agreed to keep Dinky on to give us support while she was out of school.

The second social worker started really badly- but she redeemed herself. She was instrumental in getting Dinky a place at her school. 

And now social worker 3 who just supported everything I wanted or needed for Dinky with a smile. Our first holiday, the blue badge (which has saved plenty of heart attacks with Dinky), charity funding for flooring when we moved into our new place. I forgive her for her maniac driving- really thought she was going to kill me on the way back from Dinky’s first LIAM at school! 

So the new child and family worker seems nice- apparently she is new to the personal budgets and is learning. That’s ok. I’m not sure I really need her help other than to OK things with the budget. Dinky’s budget will continue as normal, we are going to take another trip to Legoland hotel at Easter, and renew all her passes (Merlin, adventure farm park and seaside adventure park) but they are also going to help me get the garden up to scratch for Dinky. 

They were very nice and explained everything to do with the the handover and we discussed Dinky and her needs and where she is at- which is really good! Compared to last year the difference is amazing! 

I never thought we would be here 2 years ago! I just wouldn’t have thought it was possible! 

Now if I can just sort camhs….. 

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No melatonin= No sleep = extra use of respite hours

When Dinky was being diagnosed I joined parent groups- as you do. What I didn’t expect was the hundreds of negative experiences with CAMHS, not just one particular camhs- but camhs up and down the country.

With them it seems that their first port of call is to send parents on parenting courses. I was so happy Dinky had been turned away 5 times! We went via Paeds and I was counting my lucky stars, I was also (very annoyed for other parents) thankful that the CDC made an exception in Dinky’s case because the PDA diagnosis was really the start to things getting better for her.

SO when Dinky was referred to camhs I was a little apprehensive but I made the cardinal error- I thought to myself It is Just for ADHD assessment and then med reviews, I mean how bad can it get? My granddad always used to say that it is a bad idea to tempt fate. We grew up with that saying so I really should know better!

Wow, have camhs been as useful as a trap door in a canoe which holds a chocolate fireguard on a water ladder!

Dinky’s ‘assessment’ was a farce! She has been to the camhs building twice and both times had epic violent meltdowns thanks to the ‘ADHD nurses’ lack of understanding of autism/PDA/anxiety. The last time was a joke! Dinky was in her special buggy with a blackout cover and I said to the nurse “this is the only way I could get her here”- so what does the nurse do? Completely ignore the obvious ‘I don’t want to talk’ barrier and try to communicate, and then when dinky tells her to leave her alone, does she stop? of course not, because camhs live in opposite world where they do the opposite of the child’s wishes! I was severely unimpressed!

The letter from the assessment turned up 7 months late and was so wrong I wonder if he was thinking of another child or whether he realises he actually attended that appointment!

So fast forward. The consultant in November (I think) changed her melatonin and decided that it should come via signed for post to my address. I mean what could go wrong?

Let me tell you- two weeks before Christmas I phone and say “We only have a week left”, the week before Christmas still nothing. Thankfully I have some of the old melatonin left. So I phoned camhs ‘we are sorry’ SORRY- have you ever tried to look after an autistic demand avoidant ADHD, SPD child when you have both had 4 hours sleep, during a period of excessive change and stress? No? somehow  ‘sorry’ doesn’t quite cut it. I wont lie I did hope she would choke on her turkey while I had no sleep! I called the PA and said we have enough in her budget for extra hours- I am going to need them! It was a very stressful week- lack of sleep seems to ramp up PDA behaviours!

Saturday we got the melatonin in the post. I was so happy it didn’t dawn on me until I went to give her one, that they had posted out 2mg instead of 5mg capsules. I mean I know some people get 2’s and 5’s mixed up, but they tend to be in early years or like Dinky have SEN.

As soon as CAMHS opened today I was on the phone to them. Thankfully they phoned back in the afternoon and said that a new script for 5mg had been faxed off and that I will get her meds in the post.

Surely this should be simpler?

So I have to give 2 capsules instead of 1- double demand, and wait.

Although I do now have over 50 capsules (granted of 2mg but better than nothing) so if they don’t send out the script again I have spare!