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

Good luck Prince, I'm sure you'll come away feeling hugely encouraged. Our ds has come such a long way in 10 months. He still has asd but I feel we are helping to rewire him and 'recover' him, bit by bit. So he's still ds but without the fog (I like that image)

Possum, hooray for the haircut! One of the biggest changes we've seen is with 'appointments' - be it doctors or barbers. A haircut used to be five minutes of desperate distraction with the iphone; now he'll sit on his own and chat happily with the barber. (The barber's wife does bribe him with biscuits, which may help. Although not with the diet! We don't do gf/cf at the moment, his bowels seem okay but it might be something we explore in the future to see if it helps)

First day back at school today...Tom a bit nervous I think...was complaining about a sore neck (?)
The pre school teacher told me that he is "so polite!" (She spoke to him before the Xmas break up)
My aunt saw him yesterday and told me how lovely she thinks he is (and this is not a woman to praise lightly!)
And dh's aunt sent me an email after we saw them at xmas and said the boys were "interesting, well behaved and so polite" :)
Sorry to boast but am so proud of both of them...:)
Tom hated haircuts at the same age...how strange! Must be a sensory thing?
Oh, and the horror of show fittings! :( ugh. Took me and pils to hold him down usually...
Am clinging onto the boys improvement and trying to keeo positive as my mother has got to have major surgery and - worst case scenario - could lose her leg :(

Prince, hope your appointment goes well this week. We will be going next week.

Badvoc, your poor mum! Fingers crossed all is ok, it mus be very stressful for you all.

Re: haircuts. We had had the same issues but the last appointment went well and no crying (for an hour and a half) about it looking 'wrong' afterwards. Anyone else had issues with car sickness? This also seems to have mproved immensely for ds.

First day back for ds today too (yay!). His first words when I woke him "I'm not going to school'. He was ok once up, thank goodness. His first exam is a week today so I am anticipating a tricky week and a half until they are all over and much exhaustion by the end of it through trying to maintain an even keel! Can't wait untill it is all over, it is so hard at the moment teasing out exam anxiety from other issues.

Can anyone who uses a tablet form of 'Essential fatty acids' tell me what you use? Have realised that Vegepa contains evening primrose oil which seems to be a no no for those with epilepsy! Have taken him off them for now after a couple of tough nights last week and will try something new once exams are over but not sure what - have found some seemingly good alternatives but only from the States!

Daft, thanks.
Could robin advise you?
Do floradix do one?

If I don't manage to find anything suitable, I'll ask Robin when I see him. Otherwise will wait for my parens to visit the states and get some delivered to them but that option will take a while.

I'll look up Floradix, thanks.

How about Icelandic formula omega 3?
Just had a quick google....

Badvoc - I love hearing about your boys and the glowing reports from others too - you've all worked really hard at it. I'm so sorry about your Mum, it must be so worrying for you all.

Daft - good luck with the exam this week - it sounds quite tough on top of going back to school. I'm afraid I can't help with the fish oils, but maybe the Nutri Centre or possibly Robin?

We've had an 'interesting' few days. I've been making my list of DS's progress but since Friday we have been going backwards . He's been full on, difficult, hiding, every little request has been a big issue. He was really looking forward to going back to nursery and got a good behaviour sticker. He seemed really positive about his day but then wet the bed last night (first time in 4 weeks). This morning was hideous - happy but hyper and hiding, walking off, then hit me, shouted lot at dd, refused to eat or do the stair. Nursery phoned at 11 and he had an episode where he fell but didn't hurt himself - eyes rolled and he seemed to hold his breath for a few seconds. Was in his own world for a little while and then fine afterwards. We had a similar episode in June which lasted for longer and he went blue, but it was after a head bang... We popped in to see the docs and they said it was fine and just one of those things, but to go back if we have a third incidence. Sorry to rabbit on (I know I do a bit ) but trying to make sense of it all. So glad that we are seeing Robin soon - I'm going to have a long list of questions...

Hi ruggles.
Sorry to hear of the regression...
Could it be lack of routine/Xmas hols that have caused his regression?
Ds2 is nt (afaik) but his sleep is all over the place since the Xmas hols started.
Also, lots of naughty behaviour/tantrums.
I think it's known as transition trauma?
I.e. transition back to nursery/school
Just a thought...

Thanks Badvoc, I think it must be something like that. DS wasn't very keen on nursery last term and although he's missed it and been asking to go, maybe there is more anxiety there than he lets on. Interesting that it can have such a physical manifestation. We've been doing so well, and I'm really hoping this is just a blip. It's such a reminder for me of how far we've come in 8 weeks. Onwards. Do you know when your Mum's op is? Off to have a large glass of something

Ruggles...sigh...she is on the emergency/cancellation list so could be anytime.

Big hug Badvoc, what a worry and strain for you all - I can imagine that having a date helps. I really hope you don't have to wait very long and that it all goes as well as possible. xx

Thank you x

Badvoc, hope things are a bit better for your mum. Ruggles, sorry to hear ds has had a bad couple of days.
Ds is currently doing hemi p and t which are aimed at concentration. I asked his teacher today whether his lapses in concentration were a. Typical 6 yr old boy, b. slightly worse or c. Significantly worse. She said c. Sigh. I've always known we had a big concentration problem on our hands but he is massively improved since starting TH so I thought we were at the 'slightly worse' stage. She did make a point of saying how lovely he is and how easy it is to get him back on task which is a consolation.
So how much difference can these exercises make? Is the best I can hope for 'slightly worse'? I had so hoped we would get to 'normal' in every area by the end of the programme. Is that naive? Are there other concentration boosting exercises to come later too?

Yes shopping there are.
Just realised that dh has been doing hemi opk wrong with tom...sigh.
So now I have to make sure they are doing it right.
Grr...

Badvoc- so sorry to hear about your mum. Do hope things work out for her.

Shopping- I think Hemi stim takes a long time. My DD has concentration/attention problems and has been doing hemi stim p since the end of september. She is making gains but it is quite slow. I remember Indigo saying her DS did hemi stim p for about 6 months. I have faith that it works...just takes time....

Ruggles- Do hope your DS is getting back on an even keel now. Christmas is tricky for kids with DDS. Have you started the additional vitamins and probiotics?

DS finished HTS today.....thank god.....we have been at this for 51/2 months and today he go his last star for Jump Duction. We are going to see Robin on sunday and hope that we can stop this now. Really hoping he will get off the cerebellum and round to the front of the brain.

Good news from here though is that he is happy to go to school and happy when I pick him up. Also announced today that his brain was " up the right way, though a bit diagonal sometimes". In June his brain was " silly and upside down". In October it was " half upside down"

HI All,
We are back from out meeting y'day.
Hmmm. I felt a bit underwhelmed. Sorry to say :(
Not sure why. I didn't really warm to Robin (feel awful saying that on here). But DD was fine with him and DH seemed OK. So maybe I have just reached my fill of people and assessments.

Anyway, we don't need to change anything with food apart from protein b/fast and we are to do chair exercises 5 times a day (!) and stairs 3 times a day.
Considering that DD cannot manage to walk up stairs one and a time at the moment (she still walks up one foot. then bring the other foot to join) I really don't know how we are going to go with that, but we will give it a go.

I am unconvinced, but am willing to give it a go for 8 weeks and see what he says when we go back.

Not very enthusiastic am I :(

Hi PrinceRogers - sorry you're feeling a bit underwhelmed and unenthusiastic . Please don't feel bad saying that though, we're all here to support each other through the wonderful, horrendous and underwhelming bits too.... I hope I haven't over egged Robin for you. Sounds like a great plan to give it a go for 8 weeks and see how you get on - you've got nothing to loose.

We've just had our first 8 week review and looking back I am just so pleased at how far we've come - DS has made some incredible progress and I just hope this recent blip is just that. Robin thought it was to do with nursery and I have my fingers and toes crossed that it settles down rather than us getting into the muddle we did before Christmas.... DS is doing the same exercises as before plus 5 mins of Where's Wally adjacent to the one of the stimms programmes. This is to improve his concentration so that we can move onto the next stage of the programme.

DD is a transformed young lady! In the last two weeks she has been babbling and interacting non stop which has been an incredible joy. The turnaround has been remarkable and I now wonder whether she a decline before a big development push. She's now doing the chair 5 times a day and she can't do the steps yet either, but I'm sure we'll get there. She has trouble shutting her eyes too, which is very comical Our dog steps arrived yesterday and they are quite steep... In fact, I am not sure about the dog steps, but we'll see....

Ha ha, don't worry Prince, I find him slightly annoying too - his 'boy's brain vs girl's brain' joke is wearing a bit thin after all our visits!

BUT, ds is happy going there to see him (mostly) and has made progress when I think back to where we were a year ago. We will stick it out, we have invested too much blood sweat and tears in it not to get to the end. I think the stuff we will start doing next is all the things ds needs most.

It will be interesting to see how you get on over the next 8 weeks.

Thanks Ruggles and Daftmaul. I was a bit worried about telling people that I wasn't that taken with him.

We did the stairs this morning. Well. We tried to get DD to go up one foot at a time with us supporting her. That is all she can manage for now.
Need to got to Argos to get a spinning chair as we don't actually have one.

We also all had omlette for breakfast which was good.

If it wasn't for this thread then we wouldn't know about this and I certainly wouldn't be game to try it. So thank you all for putting yourselves out there and passing information on. It is really appreciated. :)

I agree with daft..robins jokes go down well with kids but leave me a bit :)
But that's ok.
I am not going to him to make me laugh :)
Wrt to the stairs...I never thought Tom would get it...he was all over the place..but you have loads if time and practise every day will help.
In my sons case I think it's the stuff that is yet to come that will help him most tbh...he hates hemi opk which IMO means its doing what it's supposed to do to his brain!
X

Prince-glad you have been to TH and got a programme for your daughter. I do understand what you mean about Robin My advise is to stick to the plan as best you can for the next 8 weeks and take it from there. I have had days when I doubt all this stuff ( especially at the beginning when the exercises are weird- particularly stairs!) but both my children are doing so well and it can only be TH.

We went to TH on sunday. My DS has now completed the HTS Vision therapy and aced Robin's test so we can stop.....now doing tracking and Where's Wally and teeth ( still!) DD also aced Robins test- she has completed the new Vision Therapy that Robin prescibes ( Engaging Eyes- target practice) She only did 5 weeks ( DS did 5 months) and Robin said her scores were one of the best if not the best he has ever seen. Also, she really enjoyed Target Practice. DS hated HTS with a passion ! {smile} She now has do do tracking and A Whack an Alien game which is also by Engaging Eyes so hopefully that too will be effective.

Hemi p and t both going well for us now that we're back in school routine. Ds loves where's wally but finds doing the wordsearches and listening to music really tricky and gets quite grumpy about it. Sure sign it's working IMO. Think we have a long way to go on the concentration front. Before we started TH my main concern was his aspergers diagnosis and the implications of that on his social skills. Can now see that the co- morbidities of dyspraxia and ADD are just as much of an issue despite never being flagged up by teachers or the paed we saw. I think his dyspraxia symptoms have been massively helped so far and he is definitely calmer and more reasonable than before. Waiting to see more concentration improvement over the next few months.

Tom's teachers have moved him up another's reading level :)
He is excited - albeit worried too - about his residential trip in may.
Dh away ATM and he had an unsettled night :( but read to himself and managed to get himself off to sleep twice on his own which is a massive thing for him.
Got a Skype appt with robin 1st week of feb.

First 11+ exams for ds today! Went in calmly after a huge breakfast (for him). It has been difficult to get him to eat much at breakfast recently, so that was a relief! Just want to get Thursday's exams over too, then we can relax a bit.

We are due to see Robin on Saturday. Not sure whether he will want us to continue with Where's Wally - hope we get something new. We stopped the word search when ds was having his numerous seizures, although I don't think they caused any of them.

Sounds as though all your dcs are doing brilliantly!

Great news Badvoc! Hope exam went well daft, sounds like he had the best possible start to a stressful morning.