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Finally A Bit More Positive

(12 Posts)
Verbena37 Sun 09-Dec-18 17:12:14

Hi Everybody,
I’ve not posted in a while because DS has been settling into his new special school.

So after a couple of blips at the start of term, where certain things triggered 2 refusals and ‘freeze’ meltdowns, DS is doing really quite well.
I would say that since half term, he has been starting to come out his room, is chatting to the family, including his older sister, much more, playing card games and chess with us, making YouTube videos again and reading books without pictures for the first time ever (before he started refusing school in year 7, he was only reading Tom Gates and Wimpy Kid books...and only if forced to read them at school.

He was still having 1:30am bedtimes (albeit routine) until last week but since then, has been lying down with me next to him and dropping off around 11pm/midnight. For the past 2 nights he has read to himself or out loud to me then brushed teeth and gone to sleep!

Even more surprising is his sudden interest in the piano. Having never attempted anything other than a few lines here and there over the years, last week, he came home and got out an old keyboard and taught himself Beethoven’s fÜr Elise and played it beautifully!

I can only put it down to his reduced anxiety at the special school, enabling him to access a varied choice of things to do without too much ppain reassure and also perhaps maturity catching up with him a bit. He is seeming to listen to us more and work out pros and cons more effectively.

I know that if the status quo changed, he would revert very quickly but at least for now, the obviously correct setting has enabled him to go back full time into a school setting (albeit with less academics at the moment) and have a nice time.

His ARFID whilst still problematic, has improved slightly and compared to the summer where he was losing weight, he is now gaining and maintaining it, as well as accessing previous age foods he had stopped eating for over 1 year.

I just wanted to do an update because so many of you on this board were so, so helpful and supportive through my EHCP nightmare. We honestly could not have got an EHCP without the help from this board and certainly would not be where we are currently without your support.

Verbena37 Sun 09-Dec-18 17:14:35

previous safe foods

pannetone Sun 09-Dec-18 20:15:51

Hello Verbena lovely to hear from you - and get an update on your DS - I did remember he was starting at special school in September and I wondered how he was getting on.

So pleased to hear that you were able to work through the early blips and he is settled at school. And great that the reduced anxiety has had such a positive effect on home life with so many improvements. It must be good to see him more relaxed and interacting with family more - and the piano playing sounds amazing!

Have to say that you’re right about needing the right school setting for him to make these gains. Unfortunately my Y9 DD (same age as your DS?) with ASD and anxiety has had a setback this term. Being (unfairly) shouted at by a teacher has led to hugely increased anxiety and DD has hardly managed any time at school since that. Really hoping we can get things right for her at the school again.

Marshmallow09er Sun 09-Dec-18 20:17:32

Verbena that's great to hear!
So pleased for your DS, and you too.

Similar success story for us too with DS's special school - huge decrease in anxiety which means more capacity to tackle things that previously were too hard.

Just goes to show what the right placement can do (also, can't help myself, touch wood long may it last)

Verbena37 Sun 09-Dec-18 21:18:59

Hi Ladies,
Thanks so much for your lovely replies!

Pannetone I’m so sorry to hear your dd is struggling with her anxiety. It’s so easy for one thing (that school would deem insignificant) to make a huge negative impact. Hope you have more support from her school soon.

So pleased that your DS is getting on well too. I remember being really worried (I still a bit) that finding a special school for academics was more important than anything else and everybody here told me it was the best environment that was more important. That’s so true.

I do worry though that the county will say he is coping too well and will remove the EHCP. Can they do that?

pannetone Mon 10-Dec-18 14:09:40

If the LA tried to do that I think it would be pretty easy to prove that the difference in your DS (attending school for instance!) is because he is in the right placement. My LA haven’t tried to move DD to a state MS secondary (she’s in a tiny independent) because of the progress she’s made - well til this ‘blip’.

I agree environment comes before academics - DD was in a specialist/special school for her Y5 and 6 which is what she needed at the time. I’m hoping DD manages to build up attendance at her current school because up til now it has been able to provide both the right environment and academic challenge.

And things do change - my DS was out of school for most of Y7 and 8. Then part time in the same school DD is at in Y9. Full time Y10 and 11. Now for sixth form he chose to go to the local grammar - with more students in his Y12 than in the whole of his secondary! And he’s doing well academically and socially.

Verbena37 Mon 10-Dec-18 18:12:54

The schools that your dc’s are in now sound really good and supportive.
That’s good to know about the LA’s. So did you decide that your dd would leave her special school or the school/LA?

pannetone Mon 10-Dec-18 22:35:54

We did look at a special secondary for DD as well as the MS one she goes to. We decided that it was the right move to give MS a go - DD is capable academically so it was a ‘good fit’ for that. Her special school agreed it was the right place for secondary and the LA named it in her EHCP. No problem there - it was cheaper than SS even though it’s an indie!

But - like you’ve done for your DS - we were aware of DD didn’t manage to make the transition to MS secondary we would look to move her to special. Again, as you’ve found no other real choice.

And with the situation we’re in ATM it’s impossible to say whether MS will continue to work for DD. I hope so but I don’t know. It is hard when she made a good transition in Y7 and has now started her GCSE courses. But her mental health always has to come first. And actually she can’t learn at all if those needs aren’t met.

Is your DS in Y9 now?

Verbena37 Wed 12-Dec-18 11:44:27

That’s so true about learning. Yes DS is in Yr 9 now. Bit of a tricky time to move him really and I’m hoping they’ll up their academic game a bit after Christmas because he doesn’t seem to be doing much academics wise...well, not in line with the coming 2 Yr GCSE course.

I didn’t want to rush in and question the school as to what they think will happen regarding GCSEs but after Christmas I will need to have a chat with them I think.

Also, even he noticed that nothing OT-wise is being done with him regarding his hyper mobility in his hands. The EHCP says he needs regular sessions of OT to help with his hand and wrist pain but he doesn’t have those. Can I say anything or do I have to wait for annual EHCP check?

pannetone Wed 12-Dec-18 13:21:49

Yes, say something! The EHCP should state who is providing the OT - the school? And a specificed number of sessions as ‘regular’ isn’t specific enough.

pannetone Wed 12-Dec-18 13:24:56

Things on the GCSE side are probably fine for now if the school does a 2 year course. DD’s school now does them over 3 years - so she’s started. I think the pace is quite gentle at this stage - which is good seeing as DD has missed so much school this half term.

Verbena37 Wed 12-Dec-18 16:38:41

Ok thanks Pannetone, I will look up the exact wording of EHCP then put something in an email.

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