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NEW Tinsley house support thread -part 2!!

(977 Posts)
Badvoc Fri 21-Sep-12 20:05:07

Hello everyone!
Thought I should start a new thread as we were nearing 1000 posts! smile
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 smile
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

Beautifulpossum Mon 01-Oct-12 21:55:58

DS coped really well at school today and was SMILING when I picked him up. Absolutely no meltdowns or controlling behaviour. Also went to bed without being scared and was singing away happily in bed.

DH did VT with him this morning with only a bit of mucking about. Previously he had been bashing the keyboard, crying and screaming. Feeling optimistic that we CAN get through the VT and his vision will be fixed....Know we have probably got another year to go but Robin seems to think that the VT is the toughest bit from a behaviour point of view.

Badvoc and Shopping- it sounds like your guys are really doing well.

Badvoc Tue 02-Oct-12 07:04:35

BP...I think the vt is the hardest part's 23 mins to begin with and even my ds1 (who is older than yours) found it tiring at the beginning.
Ds1 has am open morning at high school today....eek!
He is a bit anxious but it's normal anxiety iyswim? Not crippling, unable to sleep anxiety like he had before?
Am so proud of ds1 smile

DaftMaul Tue 02-Oct-12 09:27:19

VT has definitely been the most challenging part of TH so far (to put it mildly!).

BP it sounds as though your ds is doing really well. Isn't it lovely when they come out of school smiling? I still hold my breath when ds comes out, hoping he is smiling and not scowling.

Mock 11+ for ds today and his birthday tomorrow - what a mixed week!

shoppingbagsundereyes Tue 02-Oct-12 12:27:48

So nice to know that VT is the hardest bit. We are down to just 13 minutes now and finding it much more manageable in the mornings. Ds is just too tired after school to attempt it as he has 20 mins hwk every night too.
Hope ds gets on well with the mock 11+ Daftmaul and that your ds enjoys the high school visit Badvoc.
Beautiful possum, the changes in your ds so quickly are amazing. Robin was pretty impressed with the progress my ds had made in the first two months but you are seeing even bigger improvements. So pleased for you smile

Badvoc Tue 02-Oct-12 13:16:26

Back from open morning.
Ds1 was smiling for most of the time which i think is a good sign smile
Daft - good luck to your ds today and happy b day for tomorrow x

puddleofpiddle Tue 02-Oct-12 14:31:19

Not sure if I posted on the first thread or not but we have been looking a TH for ds1 who has AS. I've been wondering about going to one of the other clinics as TH itself is a bit of a hike for us - has anyone any experience of Rosemary Kitchiner in Milton Kenyes?
My other question is: the stair exercise - does ds need to turn around to come back down or go down backwards? Probably obvious to everyone but me blush

Badvoc Tue 02-Oct-12 14:47:25

No experience of rosemary, sorry.
Your ds needs to walk up the stairs backwards and then back down forwards.
No turning involved

DaftMaul Tue 02-Oct-12 16:51:01

When you start the stairs exercise, they should walk up 3 steps forwards and then come back down backwards. Walk slowly, with your hands at the side and eyes closed. Increase the number up to about 10.

Once they can do this and remain balanced, you change to starting going up backwards and coming down forwards.

Exams over. No idea how he did but glad it s all over and it wasn't too traumatic. Interesting how many (and which) other children had extra time too.

Badvoc Tue 02-Oct-12 16:55:50

Oh yes, what daft said!
Backwards comes later!
Really need some sleep.......

DaftMaul Tue 02-Oct-12 16:59:01

Bad Badvoc! grin

Badvoc Tue 02-Oct-12 17:00:34

I know...I my defence it was a long time ago for me! smile
<desperately tries to make self feel better>
Glad indigo didnt see that!

shoppingbagsundereyes Tue 02-Oct-12 17:51:17

We are on backwards now. Is soooo difficult. But then so was forwards a few months ago.
Turns out broccoli is only nice at school sad

Badvoc Tue 02-Oct-12 17:55:08

Ds1 has declared his love for brown rice
<badvoc faints>
Ds1 found both stair exercises really hard to begin fact so hard I did wonder if we would ever get there...but we did and in no time he was carrying a tray with drinks on!
Just takes time.

ellie4 Tue 02-Oct-12 19:37:48

I was coming on here to ask the same q re stairs as I couldn't work out either whether to come down backwards or turn around and come down forwards. I do have another q though: do they go up the stairs one stair at a time or do they put both feet on each step like a toddler does when they learn to go up steps? I'm clearly overthinking this grin

Badvoc Tue 02-Oct-12 20:30:56

One step at a time as normal, not toddler steps smile
They all find it really tough at first...and it is! Try it yourself...
(But don't fall over like I did!)

shoppingbagsundereyes Tue 02-Oct-12 21:06:38

We are toddler stepping at the moment for backwards. Is dangerous otherwise as he is very very unstable. Will do proper steps when he is more steady

Beautifulpossum Wed 03-Oct-12 11:00:33

Badvoc- so pleased little Badvoc got through the open morning so well.
Daft- glad that the 11+ is over with.

Robin told me to miss out backwards stair walking with DS as he is only 6 and go straight from 10 forwards to 3 forwards with tray. We have very mixed results. Last sunday DS decided to do 105 stair reps( no tray) they were pretty good-he thought it was hilarious. Really thought we had cracked it but since then has been back to whingeing and moaning.

He has coped less well the last couple of days and loads of trouble getting VT done today- however he got his first star for saccades. Now getting stars each time for Accomodation Rock. BI and BO still tricky.

Wondered how long it took your guys to get down to 7 minutes?...also wondered what the tracking programme is and when they do it?

I am really pleased with progress DS is making but up until March I wasn't aware that there was anything up with him at all. Had never had any SN's identified and had achieved full early years scores. He has no OCD and I don't think he is Aspie ( though does toe walk sometimes and does funny jump after every 3 steps. I used to think it was cute but now think it's probably significant!)

DS stressed out at school yesterday and had to go and get him after lunch- said he is different to all the other children and doesn't fit in- poor thing.

DD has now done 3 days of hemi stim and had major meltdown last night ( unusual for her) Has anyone else had these types of reactions when new exercises are introduced?

Just read this back and sounds whingy but will still post... the ups and downs of neurodevelopmental therapy hey!

Badvoc Wed 03-Oct-12 11:07:55

I know indigos daughter went from being always happy to being upset about her dyslexia for the first time after the vt started.
Indigo sees this as a positive thing and so do I.
Another part of their brain being re-wired smile
I think it took about 4 weeks to get down to 7 mins iirc.
The tracking programme is much much easier, and very simple and takes only about 1-2 mins to do.
Ds1 is in the highest level now -25- and usually gets full marks.
We go back to robin on 21st.

shoppingbagsundereyes Wed 03-Oct-12 11:18:14

we've been doing the VT for two months and are still on 13 minutes a day. It depends how good they are at it tbh. Ds took ages to get stars for pursuits or saccadic. Base in , base out and accomodative rock seemed to come quite easily. We now have two stars left to get on saccadic and are doing a ten min thing (forgotten its name) which tests base in and out at the same time. No starts at all for that yet and we've been doing it for two weeks. I think once we finish those two programmes we move to the last thing Dump Junction which only takes 7 mins.

shoppingbagsundereyes Wed 03-Oct-12 11:22:40

just remembered I wanted to ask Daftmaul and Badvoc (and anyone else further along the programme than me) did your dses have meltdowns before starting the treatment and when did these start to disappear? Ds has now managed 4 1/2 weeks at his new school without a single melt down (used to be at least 1 a day at the old school) but is still having pretty enormous unreasonable ones at home several times a week. Clearly the improvement at school is fabulous but I dream of melt downs becoming infrequent or disappearing altogether.
DD has never even had one in her life so I'm sure once we get rid of ds' autistic traits we can be melt down free.

Badvoc Wed 03-Oct-12 11:32:56

Can't really help as ds1 doesn't really have them.
I know indigos sin is doing really well now, no meltdowns at school and fewer at home.
I think it will take a while tbh...half way though the programme at least...

Beautifulpossum Wed 03-Oct-12 14:51:37

DS holds it together at school but has meltdowns at home but on the whole they are less frequent.

Thanks for feedback re VT. DS has no problems with pursuits and accomodation rock but hopeless at bi and bo. Suspect we have many more weeks to go.

DD will probably have to do VT after hemi stim as Robin thinks she may have some secondary dyslexia but suspect her problems will be easier to fix.

Sounds like you're getting there with the VT Shopping. Well done...does DS kick off?

shoppingbagsundereyes Wed 03-Oct-12 16:56:42

he was hideous when we first started, banging the keyboard and yelling. When we were at your stage i did VT in two stages with long breaks in between. Then I discovered he could concentrate on VT and also listen so I read Harry Potter to him while he does it. We also bribe with chocolate buttons which I'm sure Robin wouldn't like, but sometimes needs must.

newbrunette Wed 03-Oct-12 22:32:23

Hi, just joining you on here after reading bits of the thread(s) over the last few weeks. I was just wondering if anyone has used one of the other Tinsley House clinics (there's a list of a few across the UK on the website)? Does anyone know whether the service/treatment there is as good as visiting Robin himself?

DaftMaul Wed 03-Oct-12 23:30:41

As far as I know, those of us who are 'on the programme' have all visited Robin. Interested to see that most of the other contacts are chiropractors too!

I would probably call Robin and discuss with him. Ask him if there is any benefit to seeing him as opposed to someone else on the list.

Wrt meltdowns, that was one of the reasons for seeking help for ds. He was 'fine' at school but having horrendous outbursts at home. In hindsight, this was because he was realising he was struggling at school (not picked up at school until last December) and was trying to deal with it. Epilepsy was diagnosed this march.

Outbursts have definitely reduced in frequency and severity but he has had lots of input to help this (including counselling). Vt caused lots of upset initially (he snapped both arms from his glasses!) but improved once the time reduced and he found it easier.

I'm still unsure how much improvement we will get because of ds' background of epilepsy but will continue and see how we go - what do we have to lose (apart from money confused!) compared t wht we have to gain!

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