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….. 

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!



A week of firsts!

First first- 

Most parents don’t have to worry about their child moving schools until they go into juniors (normally the same school just a different building) or go into secondary school at 11 years old. 
So to them our first of 3 solid terms (1 year) in a school in year 3 is nothing- but for Dinky- this is amazing! 

First school 2 Terms

Second school 2.5 terms (the last.5 begrudgingly)

Home ed while waiting for a suitable school place- 2.5 terms 

Specialist independent ASD school- 3 terms and NO plans to move on!!!!

I could do a little dance!!! 

This school have given Dinky so much more confidence and it is the first time she has felt she belongs in a school! Which goes to show that the two mainstreams were making it obvious enough to an autistic child that she wasn’t wanted. Well, in fact Dinky is far too awesome for them, and they couldn’t hack it! 

I love her school now. There were a few teething problems and I had to get past my own insecurities about education after the crap we have been through in the last 4 years. 

I couldn’t thank the staff enough and as it is the end of 2015 and Christmas I brought the staff gifts, but no gift could show them just how grateful I am that they have worked through the tough part, kept an open mind and embraced PDA as part of the spectrum! 

So that was our first first.

Our second first (with added firsts!)- 

We stayed for one night at Legoland Windsor resort hotel! 

Dinky was more excited for staying  in the pirate room than she has been about getting gifts at Christmas! 

Again, most parents would have taken their kids somewhere overnight by the time they are almost 8 years old, so they would probably wonder what the big deal is. 

Dinky’s autism makes it difficult to go to new places and due to her sleep difficulties I thought it would be too much to go away for a holiday. Dinky hasn’t missed out. She has a Merlin Annual pass and has been to chessington, Legoland, sealife London and Brighton, and the London eye LOADS of times- and one visit to shrek adventure. She also has an adventure farm park annual pass and a seaside resort annual pass- so she isn’t short of day trips! 

Legoland hotel has been something she has wanted to do for a long time but at over £300 for one night I’ve not been able to afford it. It was a random event I went to for the local parent carer forum where I saw the commissioning manager for personal budgets who actually did Dinky’s social care personal budget assessment. We were discussing the personalisation of the personal budgets and I said that Dinky’s dream would be to sleep at the Legoland hotel, and she said “book it- use the budget!” So I booked one night for a Santa sleepover. 

I contacted Legoland who at first were not helpful, but I contacted them again on their Facebook page and they sent photos ect of the changes to the resort over the festive period so that I could prepare Dinky. I also got pictures of the room we were going to stay in and Dinky watched the YouTube video loads!

We were as prepared as we could be. 

Dinky kept wanting to bring things and I limited it to her favourite teddies, her Dino toy, her iPad and weighted blanket 

The first impressions of the winter wonderland Legoland had created was – WOW! 4 ft Christmas trees with lights on were everywhere and covered in a dusting of fake snow. All the big trees had lights on and their big Christmas tree was enormous! 

Santa and his elves were absolutely fantastic! Dinky had her special buggy and after a lengthy conversation with the militant clip board holder we were allowed to take it with us to see Santa. 

I had forewarned the elves and Santa of Dinky’s autism and they handled her amazingly well. We had done lots of Santa prep and it paid off! Previously Dinky has refused to talk to Santa, last year she spoke one sentence and that was it. 

This year Santa got a high five and an excited ramble about staying at the hotel and wanting a dino room guard and Disney infinity figures. 

The whole place was magical!

The evening entertainment in the hotel was phenomenal! 

The elves were great with Dinky (her ADHD meds had worn off by this point)- I was shocked when Dinky volunteered and was picked to help the elf with his magic tricks! 
She also played games with the Legoland mascot, a dragon called Ollie   

 And she sang Christmas songs to the Lego character Santa!

  It got a bit much at this point and Dinky began attacking me and the elves, so I took her back up to our room.

After her melatonin, Dinky slept quite well. We had the usual early morning wake up then back to sleep for a few hours before getting up and ready for breakfast at 7am.

The next day was pretty up and down as the pool was shut due to a technical difficulty, Dinky was really upset by it and her meltdown was bigger than I have seen since November. 

She spend most of the day playing repetitive games with a steady stream of new kids to fill her roles. 

We did a few rides in the dark and headed home.

Being ‘out of action’ is difficult

Dinky is hard work, whether it is due to her being 7, her ASD-PDA, her ADHD or her SPD. She keeps me in my toes. 

Last week I was in and out of hospital having tests ect to find that I have pleurisy. This week I have been on some strong painkillers, sleeping a lot and trying to do as I am told- resting. 

Breathing hurts and moving hurts, so I’ve been ‘out of action’ so to speak and had to rely on my dad which I don’t like doing.

Dinky has been quite good about it all. But it has been tough. My dad has had to come over everyday after work to help me with Dinky. She has been really avoidant and very emotional about everything. She has had lots of outbursts and meltdowns which mostly included trashing her bedroom. 

One of the benefits to being a single parent is that Dinky gets consistent parenting from me. There is no one to challenge my strategies or undermine me. Dinky and I have a way of doing things which works for us. So add in my dad, and I have to constantly remind him how to talk to Dinky and how to reduce demands to her level of coping. 

School have been great and they haven’t pushed her which has been great.

Dinky has also been distracted by Christmas build up. 

Most autistic kids don’t like decorations due to change, usually Dinky finds change hard, but she adores the sparkly decorations and the lights that come with Christmas. 

She loves decorating the tree and opening her Lego advent calendar.

We have been fortunate enough to be able to book a Santa sleepover at Legoland hotel which she is really looking forward to. She has wanted to stay there since she found the YouTube videos which give tours of the hotel.  Everytime we go to Legoland she asks if we are staying overnight! 

She has been watching that YouTube video a lot!

She can recite it word for word! 

I have had to tell my dad that he can’t say ‘if you don’t behave you won’t go’. I will not use our first hotel visit to a place she adores as a bargaining chip to get her to comply to mine or my dads wishes. That is not how we do things here. 

Hopefully it won’t be long before I’m back to myself!