I don’t think half term could have come at a better time, but what a week!

Dinky has really begun to struggle the last few days before they broke up from school.
She needed to be ‘held’ in school for her own, and others safety. She also refused to walk in school from her class to the taxi. Although I must admit I did find it quite funny when the TA said she wanted a piggyback to the taxi because her legs didn’t work!

Looking at it from Dinky’s point of view- to go to a new school full time after 11 months of being at home must be difficult.

They have really tried to go at her pace, but I think this need for a break after 5 full weeks was inevitable. Dinky doesn’t often regress, but she has over the past few days.

Last Saturday it was a struggle taking Dinky out with her new PA. As I have to supervise due to the DBS (police check) not being done, I went with them to sensory art. It was a new place but Dinky had met the people who run it before. However I didn’t account for it being in church grounds with most of the outside area being a cemetery! Dinky was scared and although I tried to carry her, at nearly 7 (just two more days to go!), she is getting rather heavy! So I manage to get her on my back and we go inside. Dinky took one look at the man who runs the sessions, he throws his arms out dramatically and booms “welcome”… Well, Dinky tried to leave,I stupidly blocked her way and got punched in the face, kicked me and still managed to escape.
I chased after her as she ran. I did manage get her to stop in a safe place. She wouldn’t talk, just growled. The PA found us and I explained what I did wrong, what I believed upset her and what I was going to do to resolve it.

Basically, the only thing I can do in that situation is wait for her to calm down.

She was almost calm when, out of nowhere, the guy came near and bellowed “it’s ok it’s new she did really well, when she is ready, bring her in.”

This made Dinky upset, and I knew that she found him too loud and imposing. So I spoke gently, and told her that I would make sure he didn’t talk to her until she was ready.
I asked the PA to go ask him not to talk to dinky, and I carried dinky back in, she ran straight over to the tent but got distracted by the sensory toys.
It ended up being a nice day out, and dinky had fun mixing paints and squishing clay.

As the week started, I had my driving test while Dinky was at her special needs group- I passed! Which is a huge relief and with a loan in my dads name, but with me paying the repayments, I have a car. Which is pretty awesome, I got dinky a proper padded high back car seat rather than the cheap booster we used on occasions where it was needed.

Then came Dinky’s 7th birthday! She had a great day with 2 of her cousins at sealife (London aquarium), once we finally got in, due to needing to pick up her new annual pass and there being problems with the system. Part way round Dinky decided she had enough of her special needs buggy and between my dad and I we were constantly chasing her, trying to stop her running through crowds and then trying to move her on from her 4 favourite areas- the turtles, sea horses, Nemo tank, and penguins.

Then came two reports. The first of which was following the telephone convo with the paediatrician a week or two back. In which she was going to help with a letter explaining the fact that PDA is not a behavioural problem and is not deliberate refusal to do things.
Well, the first bit under Dinky’s name and address didn’t bode well…

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This is the Muppet that said it could come across that I am coercing professionals… Well it would help if they we actually professional in the first place… Getting the name of the condition right would be a start!
It utterly frustrates me that for an area that supposedly understands PDA that the paediatrician that diagnosed the condition doesn’t actually get it. Why do we live in a world where parents are more knowledgable than paediatricians when it comes to the ins and outs of a condition?

This creates a big problem, professionals don’t like informed parents because some will try to fit their child to a condition and this gives genuine parents who are right saying their child has a little known condition, a bad name.

I’ve mentioned before about the child who has gone through the whole spectrum in the 2 years I’ve known the mother, whose symptoms change to whomever’s child she was best friends with at the time. The mother said for a while her child showed PDA behaviour and when the newly trained doc said no, his symptoms disappeared. This is worrying, as I bet most parents in the PDA community would love for PDA to only last a few months! This is why genuine parents get a bad name, and less obvious/more high functioning neurological disorders are considered labels, as some professionals will take the parents word and diagnose.

This is why we want actual professionals who take their jobs seriously! Unfortunately I don’t think I’m going to be a fan of the paediatrician who wrote this letter as most of it describes a behavioural disorder and not a neurological one.

Then just as I was getting over that letter…

I got one from my complaint against SENAT regarding the length of time Dinky was out of school and how long it took to do the statement and get her a placement.

Of course the letter is steeped in ‘choice’. It was apparently my choice to take dinky out of her mainstream and home educate.

My response to the local ombudsmen would be that this is like saying it is a parents choice to give their child medication for a medical condition. It is a forced choice.
If I didn’t educate her, who was going to? Not them! What, Alternative provision, put a vulnerable child known to copy undesirable behaviours with older kids who have been permanently excluded from education for behavioural reasons? Or have 1 hour 15 minutes of education for 4 days a week in the home where Dinky would refuse and get the dog to jump up at the ‘teacher’ who would have no clue how to teach my child with ASD-PDA?
Or leave her in a school where they treat her like a naughty child and give her an untrained TA on a reduced timetable in a box room and exclude her on an almost weekly basis?

I don’t really see where my choice lay? As a parent my duty is to protect her, and the LEA need to provide a suitable education… None of those seem suitable- not even home ed because I am NOT a teacher, I am not qualified either! Then factor in 11 months out of school, which is far too long for any child whose parents are wishing to home educate.

I’m not saying those that home educate that are not qualified teachers are doing the wrong thing by their children, but in logical terms I feel my child is entitled to a suitable education by a qualified teacher and the LEA is duty bound to make it happen. It wasn’t a choice I made, and I made my feeling quite clear that I was NOT choosing home education.

So yes, I will be going to the local ombudsmen with this issue!

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2 thoughts on “I don’t think half term could have come at a better time, but what a week!

  1. Totally agree with you Trish, the choice that you had was Hobson’s choice ie no choice at all. Home Ed should be a choice and not one that is enforced on you by the LA not providing the correct support and provision. Good luck in your complaint, I’ve got to say that you determination never ceases to amaze me. Oh and fantastic news about the driving test this will make like so much easier for you now xx

  2. Well done on the driving test, and also I applaud you standing up for what is right for you and your daughter. I had to laugh at the ridiculous mistake in the report. It reminded me of a report we got for our son a while back which stated he “mobilised through the use of his knees, excluding feet”. Why they couldn’t write “he walks on his knees” I’ll never know! Best wishes!

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