NEW Tinsley house support thread -part 2!!

[Badvoc]

Hello everyone!
Thought I should start a new thread as we were nearing 1000 posts! :)
Indigo is no longer posting as you all know, but I think it would be such a shame for the support thread to go too.
I know I find reading about all the ups and downs we all experience very helpful and it's so great to hear all the progress :)
So.
We go back to TH next month and can't wait. So interested to see of the tracking programme has worked. I think ds1s reading speed has improved and he is now reading proper chapter books!
He continues to show less anxiety, OCD behaviour and stress.
He is eating better and is generally a much happier chap.
Looking forward to hearing from you all over the next few weeks/months...X

Senco has summoned me in for a meeting on Monday. Despite me telling Head about Hemispheres and Class teacher about Robin and lending her his book I am apparently " secretive". Wish me luck guys!

Good news today was that DS came home from school after day with fab supply teacher saying that things were much easier. Asked if he could start having homework ( has been let off ) and wanted to do spellings. I can literally see him slowly breaking out of this dyslexic/dyspraxic prison. Also asked to do teeth exercise tonight and stayed on left leg ( albeit wobbling around ) for 5 minutes!

Off to see Robin on 8th. Hoped to have VT sorted by then but think it is impossible now as still only got 2 stars for base out and nothing for base in yet.

"Secretive"?
Wtaf?
You we, this is the sort of thing that brings on"the rage" in me
Where do teachers get off treating parents like this?
Parent who are helping our kids because THEY CAN'T!!
Argh....

Beautiful possum, have you discussed the base in difficulty with Robin? It may that your ds just can't focus for the full 7 mins yet but is scoring well for the first 5 or so iyswim. We had this with autoside vergence and Robin reduced the time expected. Ds then started getting stars.
I am considering asking ds' school if he can come off the SEN register. He really is operating at the same level as most of the other boys now and doesn't seem to need any different or extra support. Maybe I should wait awhile?
Our other big news is that we've been able to reintroduce computer games. We hid our wii last feb as he had become obsessed with playing Lego games, talked about nothing else and howled for hours after he had his 30 min turn at the weekends (he's never been allowed to play on week days). Anyway two weeks ago we decided to try again. What a difference! He enjoys 30 mins, comes away nicely without even moaning and hardly mentions it again until the following Saturday!

Shopping - ask if he can come off the SEN register.

They'll probably say no, but then when you ask again in 6 months there's more chance they'll say yes.....

Actually, they'll probably say "I'll get back to you" and then never do :)

And when he does come off the register - you'll have done it. He'll have done it. TH will have done it.

Your child will no longer have special educational needs. :)

I love the thought that it could become something of the past. We've moved 'the Out of Sync Child' and Tony Attwood's aspergers book off our bookcase this week too. Tbh he may never have been put on the new sxhool's register but given the grim report the old school sent I would be surprised if he hadn't been out on the register. Will discuss it with his teacher

Shoppingbags - that is such good news. Its brilliant for you to have seen such a change with the computer games and to hear that you are clearing out your bookcase too Fingers crossed with his teacher - you never know, but you may be pleasantly surprised! Well done

Beautifulpossum - good luck for Monday!

Ds got the silver cup today! His teacher said it was because in yr 1 he came to school with a sad face every day, didn't like maths and his teachers were worried about him. Now he is a boy who always has a smile on his face, tries hard with maths and is doing wonderfully well :)
Good job it's not an assembly parents are invited to. I would have sobbed. Ds, of course, is entirely blasé about it all.

Wonderful :)

Shoppingbags, I loved your post about taking those books off your shelf. I'm dreaming of having a bonfire of all the gloomy NAS brochures. We saw our 1st potential school this week (ds should have a statement soon so we can at least choose where he goes). The Senco was v nice but said "children with ASD make good progress but their social problems don't ever go away." And I thought "but my son's WILL. You don't know the progress he's made already." You just have to believe it can happen, right?

Absolutely. They will. Ds is a different child. It has taken just 6 months for such massive changes. We will follow the programme to the end - imagine how great he will be in 12 months time! I used to read those books obsessively, they felt like the only way I could help him. I deliberately left the chapter in Tony Attwood's book on teenagers as I couldn't bear the thought of the social difficulties he was likely to have. I now feel he will be a completely 'normal' teenager ( with the associated problems that will bring too!)
It should be even better for your ds, worrier princess as you've started earlier :)

Ds1 has changed so much since we started TH.
He is 9 now and will be 10 next June.
Along with all the great stuff (increased confidence, less anxiety, OCD, asd traits, literacy, numeracy.....I could go on) is the not so great stuff (a new found attitude, answering back and getting upset and angry)
Teenage angst is the next thing for us I guess! :)
Worrier...you have started so early...you have so much time. It's all good :)

Welcome back Indigo, glad you couldn't keep away!

It is lovely to hear about how well everyone's dcs are doing and how positive you all are.

We have a had a mega blip this last week. Ds has been having numerous seizures since Wednesday - after being very stable and only having episodes when asleep (and not noticeable to us). We have had to call an ambulance twice since Sunday and I now realise that a and e doctors don't have a clue about epilepsy! it's all a bit depressing, he has only managed about four hours at school all week and was so exhausted his morning that he had to go down he stairs on his bottom.

So, all exercises and computer programmes on hold. Robin advised stopping the second HemiStim and holding off on the other one for a week - although, I don't think they have caused an of this.

He was doing so well too!

Oh daft I am so sorry to hear that! :(
But a week off won't hurt.
Hope he feels better soon
It's a dark and scary day as a parent when you realise that the NHS doesn't have all the answers.

Thanks Badvoc. I suspect we will end up with more than a week off but will see.

To be fair to the NHS (after all I used to be an employee!), ds' neurology consultant and allergy consultant are both fab - it's just a shame they don't work in a and e at midnight

Daft - really sorry to hear about your DSs epilepsy problems.

Sounds incredibly scary and worrying. Hope things get better soon.

I'm cross with school again. DDs meant to get half an hour a week 1:1 with the SENCO. And for the last 3 (or 4?) weeks it hasn't happened.

It makes me so cross / upset / stressed. Time is ticking away.

She is improving all the time. Now 1:1 would be really effective.

On the plus side I'm starting 2 school trials of the TH intervention on Mon, which I'm really excited about. And I have another school intrested in trialling it.

So in a few weeks I should have 4 school trials running. And if they're successful, in a few months..... in a few months this could be a recognised intervention that lots of schools do.

Wish me heaps and heaps and heaps of luck. If I get this right thousands of kids could benefit like ours have.

PS if anybody can help me with how to measure improvements please PM me this weekend.

Hello Daft, I'm so sorry to read about the problems you've had this week - it must be incredibly worrying and draining for you all. Is DS feeling better? Does he often have fits? I've only seen a child fit once and I found it very difficult as you feel so helpless. As you say he's been doing so well and I'm sure he'll carry on doing well when he's feeling stronger / ready again. Big hugs.

Nice to see you bank Indigo :)

Good luck regarding the school trials! x

Daft- So sorry to hear that your DS epilepsy has been so bad. Really hope this week is easier for you guys.

Well- i survived my meeting with the SENCO. Infact she was very understanding and is going to buy Robin's book. DS is " accessing the curriculum" so not going to do an IEP but will give him some extra support. THink that is a good outcome. Have agreed to consider further assessment next term. I don't want to put DS through any more stuff now. I really believe that Robin will have fixed DS brain by the time he starts juniors ( next september)

VT is getting better. Still no stars for BI but getting nearer. Now got 3 stars for BO but gone onto small target which DS is finding harder. Still, managed to get it done this morning without any bribes. DS continues to be calm and not complaining about going to school.

Spoke too soon. Very distressed at pick up from school tonight and major meltdown.

Beautifulpossum - so sorry to hear about ds being distressed and having a meltdown I hope you didn't have too bad a night. Good news about the SENCO meeting. As I am beginning to realise with all this, there are so many ups and downs.

DS had an awful day at nursery on Friday and hit lots of children - it seems as if he has hitting days where he just can't stop / help himself. He was then very non compliant at home, upset at bedtime and had a couple of accidents in bed - I went to check on him and found him sitting up in bed, crying silently. The poor thing. This night time stuff is very new and sad, it reminds you just how vulnerable they are. I find it difficult to manage the bad behaviour while not stressing him / worry about his self esteem.

Ruggles, how are nursery managing things? When ds hit children (a lot) at your ds' age the pre school teacher did work with all the kids using a puppet about giving people space. Ds hits when his space is crowded and this made a big difference to him. They also put stuff I place like letting him have his peg on the end of a row, always being at the end of a line etc so that there were fewer opportunities for other children to get in his way.
Beautiful possum, sorry to hear your ds had a bad day. Hope today is a brighter one for him.

Sorry to hear about the blips...thinking of your boy sitting up in bed crying makes me very :( so I can imagine how it makes you feel! :(
There are lots of ups and downs...we are re wiring our kids brains..bond to be blips and bus along the way.
Have a good day everyone x

Ruggles, Shopping and Badvoc- thanks for your support.

Ruggles- sorry your DS had a bad day at nursery. It is so very hard when they are upset.

Good news from us this morning is that DS did VT with no fuss this morning. Got his first star for BO with small target and only 1 point away from a star for BI. He even said he " sort of likes it"

Back now from the school. Am absolutely shattered.

All of the kids we tested need stairs and EngagingEyes.

I'm feeling really sad and really excited. Sad that all of those kids have problems but excited that we're going to help them.

This is just the beginning.... If this trial is as successful as my school....

It is so exciting.

thanks to everyone who has supported me so far.