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