Looking back on 2013 and into 2014

2013. It was a hell of a year.

It went off with a bang, what with us living in a hostel and then Dinky being put on the SEN register.

January- January was when people started to tell me they thought Dinky was autistic, and I tried to laugh them off, It was when the CAF was first done and I realised that actually I wasn’t the worst mother in the world, that Dinky had additional needs.

By the end of February I had been enlightened about PDA. Wow, what a bombshell that was! it was Dinky to a tee and my uphill struggle started there.

In march dinky was referred to the CDC (child development centre) and we were housed in a (massive) 2 bedroom maisonette, after I was backed into a corner by the head of the school who said the new school had more experience and would be better at dealing with families like mine!

April saw Dinky start with the special needs group, start the new school, and was awarded DLA (I applied on the advice of the old senco, the SN group leader and a friend).

May saw me get very frustrated with the muppetry at the school and I met The Muppet for the first time who angered me further after 5 minutes! We also got a new lead professional for our CAF.

June saw dinky start to fall apart at school: she was restrained by the head of early years without cause, was illegally excluded from school after a stupid incident with a teacher and wasn’t allowed on the school trip.

July saw the first paediatrician appointment go horribly wrong when Dinky was seen by a numpty with no idea what PDA is, who discounted ASD on the fact that she gave him eye contact, is smart, and offered him a grape. He believed Dinky had ADHD and put in his report that he had concerns over PDA, but not ASD (MUPPET).

August saw us have a brilliant summer holiday, using PDA strategies had really helped and with the DLA and a letter from the GP I could finally take Dinky to chessington, LEGOLAND, the sealife centre, and lots of other cool places. I also became much more involved with the local Autism support group.

September saw Dinky be put with the worst possible teacher and she went down hill fast. She struggled more and more with the demands of year 1 and the transition from play based learning to academic learning. Statementing was mentioned by The Muppet and the TAC meeting went sour when the class teacher said now and next would be “too time consuming”.

October saw us see what seemed to be a competent paediatrician, who agreed there were social communication difficulties. 2 weeks later he was on the phone telling me that he believed Dinky has PDA. And I applied for a statutory assessment for Dinky.

November saw me in the possession of a piece of paper which said that Dinky had a provisional diagnosis of PDA and he believed that Dinky had sensory issues, dyspraxia, and hyperactivity (I wont let them test for ADHD until they have assessed for ASD/PDA). The school put dinky in Nurture full time, and the statutory assessment was declined.

December saw Dinky be excluded 5 times in 6 weeks, the Statutory assessment decision overturned after a meeting with an educational psychologist, the social communication team and the school. Dinky has been referred to OT and is now on the social communication pathway for ASD assessment (they all believe she has PDA since she saw the Paed in October).

So 2014 looks like it will be off to a flying start. We have the social communication report due in the post in the new year, the educational psychologist is coming out on the 21st of January, we should get an OT appointment within the next 3 months, and possibly end the year with a firm ASD – subtype PDA diagnosis (possibly alongside sensory processing disorder, dyspraxia and ADHD/hyperactivity). Then there is the possibility of Dinky going to a school that understands her and can get the best out of her without causing too much anxiety.

I plan to get Dinky EVERYTHING she needs this year, and I am going to try and make this year fun! I brought her a Merlin Annual pass on sale! (and I will get a free carer pass) We are going to use it to the max!

I’m guessing when she is not with her group in the holidays, she will be at Chessington or LEGOLAND, or the sealife centre, or even on the London eye! Maybe this is the year for madam tussauds? I don’t know the age range.

Got to fight for dinky in 2014… DING DING… round 1

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Boxing day and heading into the new year weekend

This year present wise for Dinky has been more difficult. Normally she has an intense interest/obsessions, which all her gifts revolve around.

When she was 2, all her toys were toy story. She got the set of collectors editions- woody, buzz, Jessie. also R/C, Rex, Ham, a hotwheels car set of all the charaters, smaller toys… basically the whole 4 page spread of Toy story toys in the argos catalogue. This meant when she was recreating scenes from toy story she had the full set of toys to play with.

At 3 Buzz turned into space obsession, and therefore everything was space related. A space rocket, space films, aliens, planets ect. With her birthday being 7 weeks after Christmas, Dinky’s 4th birthday was an astronaut training camp!

Last year we were in the hostel, she liked the avengers toys, and I brought the more child friendly avengers cartoons, she had hulk and thor masks, ironman, thor, and hulk action figures.

This year, well, ice age 4 came out a long time ago so there are no toys for it. She already has a teddy shira and diego, so there was nothing I could get her to go with it. I know she likes smurfs, so she got smurfs 2, a smurfette (apparently real size- 3 apples high). she likes spongebob, so got the spongebob boat, and she asked for the mavel hero playsets, so I got both.

She was thoroughly excited about them on Christmas morning and was happy flappy and jumping. Boxing day morning she said she was bored. I had never come across this so soon after Christmas. She seemed so happy on Christmas day with my dad playing with the marvel hero HQ (albeit a little controlling).

I think the smurfs is edging ahead of ice age now as there are so many things for it, and she already was a bit obsessive over them. We went to see smurfs 2 she has all the mc Donalds figures and brought them with us, she had to collect them all and plays with them quite a lot, they are the only toys she really brings downstairs.

I am still a little disappointed that she wont engage with the toys, and it has left me thinking about her birthday.

It is not really worth getting her more toys. Especially seeing as today she hasn’t touched the toys she got 48hours ago, but has chosen smurfs and playdoh instead. So what do I do? She is having a party at the special needs clubhouse, and I am inviting her friends who have special needs and possibly one or two of the kids from school, I may just buy her lots of sensory toys while I work out how to make a section of her very large double bedroom into a sensory area.

 

2013 is nearly over…

I will write a new year post over the weekend or Monday, but until then, I am going to enjoy making playdoh with Dinky, and trying to engage her in her playsets.

Dinky and me + Christmas

The run up to Christmas has been very up an down.

Dinky has been in a state of flash meltdowns. It has been very difficult to know what may trigger them.
I must admit I have been surprised that dinky hasn’t tried to open any of the presents. She had been really struggling with not knowing what the plan was and the change in routine. So I did her a picture story with now and next to go along. We practiced moving them along while going through the story. She seemed to have been a bit better over the last couple of days. Still a few flash meltdowns, but over all much better.

I have been trying to get Christmas organised to keep everyone happy. Which is not easy with Dinky, and not knowing what to do for best. I have read a few things, and if I’m completely honest, I don’t remember any ‘good’ Christmas’ so the whole thing was just winging it, trying to keep everyone happy. I’m sure the ‘perfect’ Christmas only happens if you have a perfect family, which doesn’t exist. However, as Dinky’s mum it’s my job to try to get it right for her.
It all came to a head yesterday with my dad. It doesn’t help that I haven’t been sleeping very well with the stress of keeping dinky happy and calm, and her coming into my bed in the early hours, while trying to organise my first proper family Christmas.
I desperately needed some time to organise the house and have a bit of a rest from Dinky’s stressing. My dad phoned at 12.30 to tell me he had the day off work because of the storm. I asked if he was coming over, he said he had just got up and didn’t really want to go out as he was coming today.
Well, needless to say I got a little bit annoyed. He knows I’ve had very little sleep and dinky was sent home early twice last week, so it has been a bit stressful. But no he only managed 12 hours unbroken sleep and didn’t want to leave the house 2 days in a row so I could have a little bit of a break and get organised for the Christmas I had to organise by myself without any input from him other than ‘what ever you think’. Dinky’s grandma hasn’t bothered to contact her… Thank fully she hasn’t asked for her, but it annoys the hell out of me, that someone could not bother with their grandchild. As if it wasn’t bad enough that Dinky has my mother as a biological grandmother, whose stance is ‘I already have 4 other grandchildren’!
It was the same the other week when he said he would help when dinky was excluded for 2.5 days, he slept in until 1pm so couldn’t come over as he had to do some washing!
I wouldn’t mind so much if he didn’t keep saying “I want to help with Dinky, and make things easy for you” it would be better if he didn’t say anything. But he insists that he is sorry and wants to help, and then does it again!

So, Today is Christmas Day.

It all started well, she hadn’t touched the presents when she woke me and we waited for my dad to come.
Dad came and we opened the presents. Dinky was really good, she didn’t like the books, but everything else was on her list so she was one happy girl!
We watched the croods, dinky got bored and played with her toys, then we watched monsters university, and dinky was getting rather aggressive in her game. Dad was constantly saying things that wound her up. Like asking to take her toys upstairs, telling her to put things away, telling her she couldn’t have things that were of no consequence. Basically he was a PDA child’s worst nightmare this morning! Which put her a little on edge throughout the morning and then became very controlling of my dad, who tried to take control back very unsuccessfully, and then she was calling the shots with her Spider-Man playset. Thankfully it wasn’t me as I had to prep the dinner, and I couldn’t get my dad to do it as he can’t cook? Dinky had said she wanted to try the dinner, so I wanted to make sure she would eat most of it, but I had a microwave pizza on standby.
It wasn’t long before my dad set her off and she was shouting and he was shouting. Dinky was doing all the little things she knew she wasn’t supposed to, and being rather avoidant.
Dinner was spent with me trying to get dinky to use utensils, after the third try, I gave up but dad carried on trying. Dinky got the hump in the end and gave up eating dinner.
We watched smurfs 2 and dinky was spinning and messing about.
At bedtime she was very stressed and in avoidance mode. It was a fight to get her dressed, but in all honesty it was actually a relief when she went to bed.

Sorry this is a bit of a rant.

I’m not a fan of Christmas, it is billed as a time to get all the family together and about closeness. It is very hard to have closeness when your dad is acting like a class A muppet, your daughter has PDA, and the rest of your family consists of drug taking abusive morons.

so it’s over for another year… We can try again next year!

I hope you all had a good Christmas…. If not, it’s over and we live to fight another day!

I’m going to bed. I will probably be up again in 3/4 hours with dinky crawling under my duvet… I had better make the most of it!

CDC-CAMHS situation sorted and another meltdown at school

So today I got a call from the clinical director of paediatrics.
She said that she had spoken to the clinical lead for the CDC Dinky was seen at, and is up to date on Dinky’s case. She said she was pleased to hear that after the last time I contacted her that things had moved forward and Dr A had given her a provisional diagnosis. She could understand how frustrating and confusing the whole situation where CAMHS are/are not getting involved was. After discussing the best way forward with the clinical lead, Dinky has been put on the social communication pathway to be assessed formally for autism spectrum disorder. She said that with the case being flagged as PDA, that they will take into account the slightly different presentation, and that wouldn’t rule out a diagnosis, as it would come from a number of professionals, like educational psychologist, social communication team, speech and language therapist, OT, and reports from non medical professionals such as school (using the term professional very loosely there!!!), and other areas.
The waiting list is a year! Thankfully she said that they can see that we have been waiting a long time already, seeing as she spoke to me 5 months ago, so made sure dinky was bumped up the list, she still can’t say how long it will take, but not a year!
(I think I would have lost the plot!)
She also said that the clinical lead had bumped dinky up the list for OT as sensory issues could be playing a part in her behaviour at school! (I feel sorry for those dinky got bumped ahead of, but dinky is my baby, so I am glad she will be seen sooner!)

All in all a win for Dinky, and everything is moving in the right direction.

Dinky managed a whole day in school making it 3 days out of 5 for the last week of term. However, she was in the middle of a meltdown when I came to get her.
Dinky was refusing to come home. I had no idea why.
So I tried lots of different things… Nothing… And what didn’t help, is that she had no shoes on again! I was trying to keep her in the one room, but the teacher said something and Dinky darted out of the room and into the studio. I went in and she was watching the end of ratatouille. She didn’t want to put her shoes back on, she didn’t want to do anything but watch the film. Apparently the nurture group had just left the film… I instantly thought… ‘Why wasn’t dinky watching with the rest of them?’
I tried to get her shoes on, but she wouldn’t have it and threw one at my face. The head of nurture turned the film off and dinky ran again. She was hiding in a lunch trolley. She was saying she didn’t want to come home. I was starting to get a little upset, not at her, but because she didn’t want to come home. She ran off again under some tables as I tried to find out what was wrong. Finally, she had calmed down just enough to come out.

The thing that annoys me is the school don’t understand why she would say she didn’t want to come home if there wasn’t an issue at home. I have explained that I love her dearly, and she loves me, there is obviously something that didn’t go as she wanted it to and it can’t go right if we leave.

It turned out that she was in watching the film, but came out and then was angry. I still didn’t get out of her what went wrong. She wanted to stay and watch the film.
I will bring up with the school that they said the whole point in nurture was that it is the same all the time, and they don’t disrupt their routine. So why were they watching a film? I’m sure that isn’t a normal part of her school day! Oh, funny that, routine changes, dinky kicks off and I am left to sort it out.
I can never get over how astounded the teachers are when dinky then walks out with me professing her love for me so quickly after refusing to come home.

So 2 weeks of no school to worry about, statutory assessment in the pipeline, educational psychologist coming out, and dinky being put on the social communication pathway for ASD.