Stressful weekend…

I am so sick of hearing about cases where parents are made out to have Munchausen’s by proxy, honestly… who in their right frigging mind chooses this life?????

Of course a person could argue that they wouldn’t technically BE in their right mind. I’m so exhausted I cant even be bothered to rectify my opening statement.

I had bits of paper sticking out of my overflowing presentation folder, so I had to buy a new one on Friday and spent 45 minutes re collating the paper work into some logical order with all the relevant information at the front.
I have now digested the social communication report which is interesting. The strategies are of no shock to me. I am quite glad that the ones I highlighted to the school are on there.

Dinky has spent most of Saturday controlling my dad. He is in one of his ‘I understand she has a condition’ phases, so I am utilising it while it is here! Dinky had him build her a training base for her ninjago characters and I was told off for not getting Kai, the Red Ninjago character, but it isn’t all bad because she had both versions of Lloyd the Green/Gold ninja who was bad but turned good. She also told me she wants a ninjago cake for her birthday. I am actually considering trying to find her a little Gi (martial art uniform) in green so she can go to her party as Lloyd.

Today Dinky has alternated between a small number of things, Lego Ninjago episodes, Lego Ninjago playsets, spinning, and mouthing EVERY rubbery item in the vicinity, it took a while to actually convince her to use her chewigem. I am not one for endorsements, but if you are reading this and your child is a chewer definitely have a look at Chewigem.co.uk (they do have an American site too chewigemusa.com ). I like them because they don’t actually look like medical chews. Dinky has a necklace that looks like the candy from cut the rope!

Anyway, back to today. Dinky was flitting through her activities and at one point she smashed into me and demanded tickle time. I indulged her, and it seemed to calm her. She didn’t want me to play Lego, she didn’t want me to read with her, she didn’t want me to go in her sensory den, she wanted to be in her sensory den with her iPad and Lego alone. I feel suitably abandoned. Obviously I was at her beck and call for drinks, snacks and to be at the receiving end of the occasion soliloquy regarding Lego or a child at school.

I have been trying to figure out what on earth to do about The Muppet.

What do I do?

The woman contacted social services over the most natural of things. She doesn’t have kids, so she wouldn’t know. She told them about something I said when I was ridiculously stressed out, and suffering insane levels of sleep deprivation. She told them that my baby is controlling (although that is better, she used to say power seeking), displays extremely challenging behaviour and doesn’t want to come home. The first 2 spot on, the third, well, that was her interpretation, the interpretation of a muppet with no idea of a mother child relationship, without knowing what it is to be a parent of a child with complex additional needs, without taking on board the provisional diagnosis of a child within her school. The real cause of that is the ultra high anxiety levels and the fact she is faced with 3 demands. 1) get shoes on.. because my child likes the sensation of walking around in her socks. 2) Put coat on, which is enough of a demand in itself for a child with PDA with such a high level of anxiety, but with the added demand of doing it up which she still finds tricky and gets frustrated with. 3) Walk the 10-15 minutes home.

It isn’t home that is the problem, it is the 3 demands she faces to get there.

However she left out that bit. She left out the bit where a highly trained medical professional has said Dinky definitely has PDA, where this medical professional has written it on two different documents, and another document sent back to say she also fits the criteria for ASD given the information that the Paed sent to CAMHS. She misses that bit out, because it sounds worse when you put sexulaised behaviour with avoidance, challenging behaviour, and not wanting to come home, that spells abuse.

Thankfully the Social worker was clever enough to see it for what it was. A child with an autism spectrum disorder and typical child behaviour.

So what do I do about the fact that The Muppet left that out?

-Do I call her out and say “that was out of order, I want an apology”?

-Do I leave it as it didn’t go anywhere – apply the no harm, no foul rule?

-Do I take it further as it was completely unacceptable?

-Or do I wait, refuse to talk to the school until the TAC and bring it up there and see what the other professionals say?

I opted for the last one. I have written to the Muppet and told her that I am cancelling our meeting tomorrow. I want to know why Dinky is in the Staff room in the morning, how that impacts on her education, and how to stop her from feeling excluded, and I would also appreciate a copy of the updated support timetable.

I also decided to respond to the social communication team email. The email on Friday was not only to deliver the report, but also to ask me if I wanted to meet up with the specialist TA, and go over her role with regard to Dinky. She also said do not be afraid to contact her if I wanted to. Which is always handy when the same person is the one who chaired the PPM and sits on the SEN panel for statutory assessment and statements of SEN.

So I did.
I thanked her for her report, took her up on the offer of meeting the specialist TA, and asked her how it was going to work when Dinky is constantly being excluded, twice last week, and now that she is no longer in Nurture.

I wasn’t expecting anything back, but I did get an email back, at 5.30pm on a Sunday! She said she was going to phone the school first thing and thanked me for updating her.

I also took the opportunity to update my parental views with the SEN caseworker given that her provision has changed, we have had 2 more exclusions and I have new understanding of the special school criteria.

Honestly, this is where people realise what parenting really is. No matter how stressed, how hard things have been, a hug and an I love you mummy, from Dinky is enough to keep me going.

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