Tinsley House Support Thread Part 4!!!

[Mangomanila]

This thread is for anyone interested in the Tinsley House programme. All welcome!

A brief synopsis of stage 1 of the programme can be found in the books "is that my child?" Or "the brain food plan" by robin pauc;

Stage 1 of the TH therapy consists of:

1. Daily Multivitamins

• Omega
• Zinc & Magnesium

1. Healthy eating

• High protein, low sugar, no artificial sweeteners, additives etc.

1. Specific neuro development exercises done 3 times a day

• Takes about 4-5 mins

And that's it smile

Stage 2 involves computer programmes to sort out eye tracking and convergence which over 80% of children with reading/writing problems have.

• www.engagingeyes.co.uk

Hi Sunshine, I think you must be asking after me.

We have decided to take a break from TH.

We were doing DD statement and there was just too much going on and too much stress. So DH and I decided to take a break from TH. We figured a good way to see if something was making a difference was to take it away and see if her progress slows down. I am pleased to say it hasn't

We also just needed to stop trying to fix her. Or at least stop thinking of TH being a miracle cure for all her issues. We have started to deal properly with her shouting and screaming, we are concentrating on OT and SaLT and we are accepting her for who she is.

We did TH for a year and whilst she did develop and do well the changes just were not profound enough to warrant the stress that it caused with the daily exercises and the panic that we were not doing enough.

I also felt that I could have told Robin that DD was growing 2 heads and he would have said that was what he expects. I was just not convinced I'm afraid.

DD is still doing well and she is still making great leaps, but is still a long way behind her peers.

As a family we need to get to a good place and not be trying to fix her too much as we also need to accept her.

I do believe that TH works for people. I would never disbelieve what I have read here and people's experiences. I also think it is something that we could look at again in the future. But for now we need to concentrate on other things.

Thanks for responses.

Yes justlooking I think you might be right. I'm not sure i can last that long? But have had the problem so long what difference is another year?

Hi prince, thanks for coming back to the thread. I totally understand where you are coming from the daily grind of the excercises on top of everything else. And you are right maybe we are just fighting the acceptance stage? Maybe he can't be fixed and I am starting to think that the hope that he could be is damaging me.

I don't know. We are just nowhere! I feel a bit calmer tho. Xxx

Hi Sunshine - thanks for asking after me. Sorry to hear that you and Prince are going through such a hard time. In a way I'm feeling similar to you two re Tinsley House but in another I feel humbled because my DS does not have such challenging behaviour, and often when I look at this thread (which I do a lot even if I do not post) it makes me feel that I am so lucky really because I do not have to cope with the difficulties that you and many others here have to. DS is not diagnosed with anything - various experts have described "complex needs" - always things that someone else may be able to help with rather than them. A few have ventured ASD or the usual mix or ASD and ADHD but what it comes down to isthat he doesn't focus on anything at school and that he is "odd" with little social awareness, so few friends. But he has empathy and enormous imagiation

Re TH, I haven't noticed any change. We are doing stairs, teeth, Hemi P,T and the other one whatever it is and finishing Eye tracking B - have finished the other engaging eyes. I know what you mean Prince, re the 2 heads. We have been told that work so far is the foundation upon which the other stuff,which will really start to make a difference, is built. I don't know, but I'm prepared to stick it out longer because I can. DS is ok about doing the exercises, which obviously makes a huge difference. His teacher is understanding and does not insist on him doing homework.

The conflict of "treatment" and trying to "fix" with accepting a child for who he is is so hard. We went to a nutrition expert recently to check out food intolerances. AllI got was "no, he hasn't" (no tests done) but he's probably high functioning autistic (all my responses twisted to fit the diagnosis) and I should stop trying to "fix" him, and concentrate on adapting his environment.

Aaargh, life is hard enough; I thought I was just tryingto help him deal with it a bit better because it makes him miserable sometimes whenno-one invites him to birthday parties, or round to tea - even when they've been invited here......... o when he feels stupid because he can't finish anything, or can't thinkof things to say quick enough so people think he's stupid. But yes, I don't know, I just don't know if this is all denial. Sunshine I really feel for you because it does makes you feel alone - I have it so much easier than you so I can only imagine how you feel.

Has Robin given you any timescale? We have been told a year, but 8 months down the line I wonder but I intend to give it a year and review at that point - and to be honest try not to think about whether it is working or not at this point. Hell, we'll try anything - we're even getting a dog in a few weeks as I think it might help. (Should also point out to concerned dog lovers that we are experienced dog people and not doing this on whim!). I hope things get better for you sunshine - and Prince and at least that maybe you can get a break at some point.

Keeping going is really hard. It's such a long and often depressing road with the pressure of caring for our kids an immense weight. I respect where you guys who are taking a break are coming from. We all have to find our own way.

One thing I am sure if is that the brain CAN change. DS could never remember letter shapes. Now he can. To me that says that they visual part of his brain is 'opening up' and beginning to function. So his brain has changed. So I believe other areas if the brain can change too. And that's why I think it's worth carrying on.

What's more, DS recognizes he is improving in all areas (slow, yes, but improving all the same) so he is more compliant with exercises (we do at least 40 mins of 0T and TH every night, after I have got DD to bed). I just can't NOT do it (no matter how shattered I am) because I'd always be wondering 'what if...'

Will he be 'fixed'? I'm not expecting him to be. But I do thing he will have improved enough to cope with the rigors of life. TH is part of that. As is OT work and Gluten avoidance. And probably lots of things I've not researched yet. But I will. DS will be the best he can be.

Good luck to everybody, in whatever path you follow!

Hi,

Thanks all x

I think I am overanalysing at the moment. A good goal is a year, and October is a long way, so will persevere.

We had some more bad news here. We failed to get DS into the Junior School of our choice. By some mad reason that has never happened before 4 kids in his class have been sent to another (dreadful) School. As if transition wasn't going to be hard enough, now he has to transition to a School with loads of problems and with no friends. Argh!

Nellie and Mango your both brilliant for trying anything. DH and I have re done the whole garden/ house trying to help him ( loads of plants, mood music etc). We are great Mums!

Very excited to be reading this thread...we are going to TH next week.

sunshine good to hear you are sounding more positive, despite school nightmare...

running Welcome to the thread! Let us know how you get on and feel free to ask anything

Well we've have been and started DD on zinc and magnesium.

Need to buy a office chair...seen some in argos so will need to try and get into town to get one. As for the stairs we are going to have to get some built I think, we only have spiral stairs!

DD loves meat so that's no problem but just need to implement into her breakfast.

Next time we will be staying down there overnight as a 10 hour drive was no fun!

Red, we've done all "meetings" since the first one by Skype, I also wasn't impressed by the drive

not that sounds like a good idea.

I'm trying to catch up and reading all the TH threads, still on thread 1 at the moment. It's going to take me weeks.

Any tips that you were given or read that was valuable?

Breakfast today consist of 3 bacon a 1 piece of toast. That's ok isn't it?

I feel it's amazing being part of this, not only will it help DD but I'm feeling very positive about it all too.

Has anyone done this with their NT child? DS was feeling that he was missing out so at the moment he's joining in.

I'm back again....

Right DD has been on CF diet for years for health reasons.

She hates milk and anything that has milk in it, won't even tolerate one of us sitting next to her with a glass of milk. She has just asked for milk to dip her GF cookie! Is this the exercises working already? it's only day 3! She has tried a bit of carrot and potatoes over the last two days but only because I said she should try not because she wanted it.

We started noticing changes in a few days so maybe.

My ds is coeliac so for breakfast we just do protein - piece of chicken, some ham, lump,of cheese etc as he doesn't like many of the gf cereals.

Hi Red.

Best bit of advice I could give is post any Qs you have on here.

Sure there was someone who used caravan steps (free standing) for the stairs.

Think the stairs exercise is beneficial for all ch, so no prob with siblings.

Keep posting!

Trying to find vitamin c and b complex for DD... Does anyone get them from boots? She 8yo.

I will have to look for caravan steps, thank you I would never have thought of that.

I get my b vitamin from amazon, my zinc and vit c from boots when they on 3 for 2

What mg vit c and b complex do you give?

Will have a look on amazon and boots when I can get into town.

Hi there, I haven't had time to read the thread for a while, Easter hols etc and if I am honest, my motivation for TH reducing. Very interested to read that you have taken a break Prince......

DD been doing TH for over a year now, for dyslexia. We have done EE to death, covering a re-covering bits of it in an effort to help her apparant mechanical reading issues. After hours of input she can sound out almost any word, but still struggles with tracking (?) the words on a line, word and letter reversals. Also still doing stairs, and been doing Hemi P and T since July. Robin has alway been reassuring,....all children progress at different rates etc, which now comes after an optimistic prognosis from him at the beginning that this would take 9 months max. Anyway, rant over.........I few things have improved, like DD co-ordination, and her memory appears to have picked up a bit too, but like Prince, nothing big enough to feel that it has justified the effort. I feel bad for DD who has put in so many hours, generally willingly, without much result. Will she turn to me soon, and say, why have I had to do all this???

We are plodding on. I did tell Robin that we were struggling to keep going with all these things for so long, and it seemed to me, that as a result, he moved us on to Lumosity, and said we could stop hemi P and T. Does anyone know what score we are aiming for on Lumosity?

Mango - Robin said to do Hemi T without the music, sorry for the slow reply

Sunshine - sorry to hear about your DS behaviour. I was wondering if you have any other options aside from TH on the horizon? AIT, CAMHs, I don't know what you have tried already....if there is something out there that looks worth a try, I would be tempted, rather than stay in a situation, feeling so battered. I hope things are looking up for you.

bright stars have you considered cranial osteopathy? Possible it could be a physical mis-alignment which could be improved?

Mango, thanks for your suggestion, no I haven't, but someone else mentioned that to me recently....DD had cranio sacral therapy after she was born, is that a similar thing/the same thing? Will any cranio osteopath do?

You need an osteopath who specializes in pediatrics (which is basically cranial!). Am taking (dyslexic) DS (also lots of vision issues- moving letters etc) next week. They basically check the body is properly aligned and can make tiny alterations through v gentle manipulation of the skull.

That's very helpful thanks. I will revisit our local cranio sacral man!

Bit of interesting improvement in DS. For the first time he has begun to play imaginatively. Previously, DS was very much process driven (laying out train tracks exactly like the real stations he knows, building Lego (but not playing with it)). A couple of days ago I overheard him talking through a story and using the Lego people.

He is also talking about school a lot more. This had always been a closed book...

Probably a combination of everything we are doing, but these changes came about after 2 sessions with the cranial osteopath.

Hi guys,

We are close to giving up. 8 months in and we have seen no change. So much effort. We did rrt before for a month and saw changes within 10 days. I guess some things work for some children and not for others.

Has anyone seen no progress at all? We are a few weeks into hemi t.

Also, does anyone else notice with their children they seem to have a good 6 to 8 week stretch then a terrrible 6 to 8 week stretch?

Much love to everyone xxx

Hi sunshine. Sorry to hear DS is not making improvements.I think quite a few on here have found it's not been the right thing for them.

I think you are right that different ch respond to different things. We started 8 mths ago as well (not on hemi yet) and we have had improvements, though I don't attribute all of these to TH. We have also done AIT, gluten free, occupational therapy (sensory probs), just started cranial osteo. I believe the improvements are coming from a mixture of everything (probably not very helpful I know!)

You mentioned retained reflexes. Did you complete the program? (Sorry-cant remember). If DS was responsive to it, maybe go back to it? I still think I might need to do some of this at some point.

Our worst time was 3-4 weeks over christmas. That was really bad with tantrums. Since then, its been much reduced and less severe.

Virtual hugs!

Hi Sunshine, sorry to hear it has been so difficult for you recently....not sure if this will help, but here is my experience of TH.

We have seen few changes, despite doing TH for 13 months now. We came for her reading/literacy (DD1 is 9), and I would say there has been very little change in these areas.

However, we have had changes in other areas, her co-ordination is better, and she seems to be able to remember more volume. Now she knows all 12 tables, but also a year has passed, and we have been practising tables daily since sept. In the past we gave up when we taught her 4's and she forget her 3's, we taught her 3's and she forgot her 4's. It is possible that we have simply done enough repetition now. DD is dyslexic and mainstream people tell us she will get mental maths/spellings with enough repetition....

We did AIT at Easter, and she seems to have taken a leap forward in her vocabulary........

The trouble I have with TH is there are no controls.......all children progress with time, and in my experience, often in fits and starts. My NT DD2 has been level 2b at the last three parents evening ie a year. Today her teacher told me she is now 3a - an apparently huge jump from Feb, but according to her teacher, not particularly unusual....

Anyway, having committed the money and got the exercises into our daily routine, we haven't had much to loose by keeping going. As we don't have any behaviour issues, it has been fairly easy for us to hang in there, and DD is old enough to do most of it on her own.

Robin has asked us to visit in person again to reassess her eyes, as EE for 12 months hasn't improved her reading/tracking issues, and her eyes don't seem to do the right thing in OPK. This is the first time I feel he is "re-assessing" what is going on, not just telling me to give it more time.

I still haven't visited the cranio sacral man, but it's on my to do list. While we have the time and money to do things that might help, we will go on doing these things. We are also doing all the mainstream things for dyslexia, reading programmes, spelling programmes, learning to type etc. What have we got to loose, apart from collapsing from over work!!! (and neglecting our other children)

Sorry that turned in to a ramble!