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

We go up and then step backwards. Amazing really as ds still if he can tries to walk up and down steps like a toddler, both feet on each step, but can do this exercise, albeit wobbly.

Not sure he's hypermobile and complains it hurts but just the three doesn't seem to .... But perhaps that's cos he knows he HAS to do them, no prisoners !

Well we've started the diet and are doing the exercises. Am yet to order supplement.

He seems to be able to do the stairs and teeth fairly well. Do they have to be totally wobble free?

The computer exercises he did not like as he can tell hes not very good at them. But conversely I think cracking these will be the most help.

Since starting on this journey 8 weeks ago, DS is still a handful and hyperactive, but he is more joyful and much less angry, teary, screamy.

Ruggles - interesting to hear of your experience with Jenn Clarke re brushing. I have been looking for a therapist who can do this as I just feel intuitively that it would help my DS. One of his "quirks" is tying his hands and arms up in knots, constant squirming, lots of jumping up and down and hand flapping if excited, rolling himself up in blankets etc.....

re the "Bribes", star charts have never been my thing as I feel that I want them to strive to do well, or be good for its own sake - and that the more challenging behaviour should just be met by natural consequence, rather than punitive measure - eg - "you've messed about in the bath and ignored me when I asked you to come out so now there's no time for a story.."
However....back in the real world... - I finally started a Harry Potter style system - eg 10 points off, or awarded to, Griffyndor. This was more to address specific problems - eg getting ready for school in the morning, leaving friends houses without meltdowns etc. If down on points by end of the week, no pocket money, magazines or ice cream. If up, they get their treats and if a long way up an extra one - eg going somewhere they want to go. On a daily basis if they are down on points for that day, they do not watch television before their bath. Both my DS and DD love HP so this does sort of work - the other thing is that if one loses or gains points it affects both of them as they are both "Griffyndor" - this seems a bit unfair but I wanted them to see the value of teamwork and how their behaviour can affect others. It would not , I know be appropriate for all siblings - it really works with mine. They do not get furious with each other over losing points as I emphasise the need for them to make up their points, and they take delight in the other doing something well and getting points. They are also fairly equal in gaining or losing points.
(I have also saved a bit of money as initally they quite often did not have enough points at the end of the week!)

Harrietv - it is really interesting what you say re right and left sides of the brain for communicating in safe, or new environments. I'd not come across that before.

With the the TH exercises we are just doing steps and engaging eyes at the moment. I am getting a little dispirited about steps and we have been doing them since Sept with no discernible improvement -DS marches up fine, but is still slow and hesitant coming back down. (My DD has also been doing them to keep her brother company, and she is much the same -as am I!).

I've seen a lot of ref here to "hemi" exercises - what are these?
I also wanted to say that I find this thread really useful - hearing about the progress that other children have made is so encouraging.

Nellie, the hemi exercises once you finish engaging eyes. They are designed to improve concentration. They are dull though and irritating and you have to do them forever. We did 4 months I think, might have even been 6. They do work though.
Sunshine, we turned the sound off for the computer exercises as ds hated the beep sound when he got something wrong. We still do lumosity on mute for the same reason.

We had an interesting visit to an occupational therapist yesterday. Lots of sensory integration issues (to add to the list!) which explains why DS likes bashing things (tables, doors) and dragging heavy things around. Anyway, the assessment was about 2 and a half hours and the really exciting part (for me) was that DS made eye contact, spoke to, interacted with and joked with the therapist. Right from the start. Previously he would have shrunk away and been silent or made silly sounds. Not sure if it's TH or audio integration (or a bit of both) but it is massive progress for us.

Magnolia - that is fantastic news! Especially the eye contact. DS was very patchy with this before TH and bruhing and now loves gazing into people's eyes I think that maybe the eye contact helps to open up everything else.. ?

Hi everyone, I was a prolific poster in the early days of doing TH when my DS was having such terrible difficulties. I have not posted much recently but that has been because everything is so so much better and I hardly think about this anymore.

I started TH with my DS in August 2012. He has an IQ of over 135 but ( yes, you guessed it!) was struggling to read and write, couldn't hold a pen, low energy, meltdowns, controlling and generally very difficult to be around. In a nutshell, he had DDS which manifest as symptoms of dyslexia, dyspraxia and ADHD and ASD. Prior to TH he was assessed for Retained Reflexes and he had retained every single Reflex. His reflexes were a mess, he was a mess and I was a gibbering wreck.

We started with RRT with Hemispheres in June 2012 but quickly changed to TH after I read Robin's book and read inspiring mumsnet posts from Indigobell, Badvoc and others. I have NEVER EVER regretted the decision to change and NEVER EVER regretted doing TH.

Like many of you I have looked at many many different therapies, Neurodevelopment, Vision therapy and Auditory Training, brushing, Handle, Sunflower and more....

The order I did things in was dyslexia assessment, BO assessment, RRT assessment and a month of RRT and then TH. I have also recently done AIT. With hindsight I would do the following.

Diet and supplements, ( Vegepa, zinc, magnesium, B vits and probiotic), TH and AIT. I would not do Behavioural Optometry as I think Engaging Eyes is better, and I would do TH over RRT)

We have been doing TH for 15 months. My son is doing well and is on the final part of the therapy, Lumosity. ( which are computer games.) AS things have got easier he has become more willing to do the exercises. I asked Robin at our last assessment how much longer we had got. He said most of next year. So, I think TH will take us just over 2 years, but it is so easy now and I think we could stop now and DS would be ok. But I don't want to stop. DS is still improving and the exercises are so much better.

Keep the faith everyone. It really, really is worth it. As Badvoc says, it is not a quick fix, you have to do it day in and day out for ages. But....the results are worth it.

Beautifulpossum your post could not be timed more perfectly.

My DS is the same, high IQ, meltdowns, obsessive, wired, wild and demanding (OMGoodness demanding!)

Things came to a head at the beginning of Sep. We saw a RRT therapist in mid sep, by 1st oct he had stopped hitting and fighting (me). Longest time for 2 years.

I read loads about TH and decided to change. We saw Robin last Monday and have been sorting out and starting everything in the last week. This has coincided with DS's behaviour deteriorating, and he has hit a couple of times. I've been panicing. Why did we stop RRT?

Anyway I'm going to copy your post to DH.

Thanks xxx

BTW what is AIT? and when everyone started TH, how quickly did you see improvements? x

I've started thread Robin's book. My son is already pretty stretched with physio every night, etc. it'd be hard to fit it all in but I'm up for it. He already takes eye Q and animal parade multi vits. Do I need to chuck the bag of (3 for 2) vits. I've stashed? Or are they similar? Do I need to have his bloods done to see whether zinc would be beneficial? If he's not on the right vits., which brand and were from (cheapest way of buying the right product please)?
His diet is already sugar free and low GI. He's almost. 6. I do, however, give him a piece of birthday cake, icing scraped off but obviously sugar in the cake itself, at birthday parties (some weekends). Do I need to cut it out completely. Since we've been sugar free for rather a long time (his while life), ice noticed only recently that he's being teased at school when teachers give out fairy cakes for someone's birthday. Mums send them in. I was thinking only recently of succumbing and letting him have one, just TK avoid social alienation and teasing. His social skills are fabulous with adults 1:1 but other than that. ( group situations and children), pretty controlling. This means that he's already alienated. Don't want to give mean kids a reason for more finger pointing

More knowledgable people will be along but have those vitamins got sweeteners in them, robin thinks they are the spawn of the devil ? I get my zinc from boots, not had a blood test as ds is needle phobic. Since we have been doing th (sept) he has not yet come down with any sort of cold (amazing as he normally catches everything !!!). Son is coeliac so his diet is pretty restricted anyway but we do have cake, robin told us it was ok as long as it was "pure" ie home made with no additives in.

Hi MOY, as Pizza says, make sure whatever you give in terms of supplements has no sweeteners (I think the eye q chews have xylitol) or e- numbers.

It is also important that you give a product that is high in EPA and, if it also contains DHA, this must be less than the EPA. Many of us use Vegepa (there is a code on TH website that gives money off when bought direct) which is pure EPA.

We have never had blood tests either but give all the supplements recommended and ds sometimes has cake. I don't think he would agree to not having it a school if it was offered - although, having said that he did have to miss out until he was 7yrs old because of an egg allergy.

We are still plugging away at Lumosity too. We saw Robin at Half Term and he also said to us that we need to continue for a bit more and then, hopefully, as the work levels increase at school, that will do the same job that Lumosity is currently doing. We will have been doing TH for two years in February.

Still having ups and a few downs and have had to increase his epilepsy meds again and have more tests. Also had an ambulance trip and a night in hospital at half term, when ds had what they think was an anaphylactic reaction. He is also having nut challenges in hospital this half term over three different days, so I am sick of hospitals. Oh, but dd now has her cast off her arm!

Hi Sunshine. AIT is Auditory Integration Therapy. We did it through the Sensory Clinic in Reading. PM me if you want to go through it in more detail.

We too saw benefits to DS when he did his 6 weeks of RRT. He was definately calmer. I think RRT helps but TH is better. I also think TH is more powerful so you may get more of a reaction to start with. We had a terrible time on the stairs for the first few weeks. Things started to improve within about 3 weeks and by 7 weeks he was alot better. I needed so much support during this time, which I got from Robin and other people on the thread. It is very hard to start with. I am always happy for people to call me to chat if it helps. Indigo was a complete lifeline for me as she had been through it and understood. Hopefully I can do the same now for any of you who are feeling the strain.

Mumof theyear- Vegepa is the fish oil that Robin recommends. It is pure EPA. I give Vegepa. Eye Q is a combination of EPA and DHA. The two floradix products that someone refered to earlier are kindervital and saludynam. I used to give these ( and would recommend them) but I now give an alternative.

Thank you both! Would you mind telling me the name of the zinc and other supplements , link and code? Sorry to be a pain but I can't find it on the thread.
How much of a time commitment each day is the programme? They eyes bit is 10 mins a day, isn't it? The rest - how long? Just want to prepare myself for the commitment mentally.
Is it all laid out in the book - it better to make an appointment to see Robin?
Do people generally get both siblings on the programme - or just the one who is in need?

Apologies for so many questions!

Mummy - the stairs take about 45 secs 3/4 times a day, the tooth brushing is normal time but with different hand balancing and yes about 10 mins on the eyes. I get my vegepa from amazon on a subscribe and save, also my magnesium and b12. Zinc I get from boots (stock up on 3:2 offers)

Not got siblings so can't answer that one, we saw Robin which I'm glad about just to reassure me I wasn't going mad !

Beautifulpossum - really interested in your post re the different therapies and approaches. Since coming to this threadI have been on a bit of a steep learning curve. When I came across sensory integration/processing disorder, while researching brushing therapy I thought my god! - that is my DS! - and then all the stuff about retained reflexes which really seemed to fit (DS was emergency caesarian, still doing moro reflex when 12 months and sleeps supine head to one side), I spent about 3 hrs last night looking at neurodevelopment therapy after seeing your post. My head is buzzing.

BPossum - you say that your child was a little better after 3 wks of TH and then real improvement after 7wks. We have been doing TH - steps and Eng Eyes since Sept, so far no change - I know it is a long haul, but after looking at all these therapies what occurs to me is that certain therapies might be more suitable for a particular child depending on where their difficulties lie, so I'm trying to figure what might be best for my DS. You are also impressed with AIT - I wonder what aspect of your DS's behaviour did this seem to help with?
In some ways I am really lucky - DS does not have real behavioural issues that mean he is disruptive at school or at home. He tends to withdraw in the classroom - never joins in with class discussion or volunteers answers - just drifts off. He is unable to stay on task, focus or organise himself - in anything - from getting ready to leave the house in the mornings to completing, or starting (!) any task at school. If he is not staring into space he is constantly fidgeting, tying his arms in knots, jumps up and down when excited, has/had issues re clothing, difficulty putting words together, talks incessantly about things that interest him, and is generally silly at times, overreacts to certain situations and finds it hard to make friends.

mummyofthe year - Floradix Saludynam (solution in a bottle - zinc and magnesium) vegepa is what TH recommend for omega 3 although we are vegey so use another omega 3. We do about 10-15mins for engagng eyes and then 3 lots stairs per day - about 30 secs a time, but others are also put on the toothbrushing one, re siblings, no - just the one in need - although my DD does do the steps as well to keep DS company.

Really helpful. Thank you. The Book is still in my bag - ready for me to read it. Are the steps and tooth brushing exercises in there, too? Best to start before or after seeing Robin? Can he 'diagnose' as have got nowhere with CAHMS and am waiting for fully diagnostic assessment until my (almost 6 year old) DS turns 7.

Hi everyone

We waited to see Robin before starting the exercises as I was worried that DS wouldn't do them and that we would get off on the wrong foot (so to speak). Children love Robin - he's very charasmatic and I think my DS responded well to his instructions.

Nellie- that's a good question about different things for different children. Im not sure, but I know that some DC find different parts of the TH programme difficult/ easy/no reaction etc. We were told 4-6 months before we saw any changes - things started to change quicker than that, but it is a long haul. We are 12 months in and probably have at least another 12 to go. It would be quite easy to stop now as DS is so improved that he is very similar to some other children who get overwhelmed when things go wrong or when he's excited! We have parents evening later this week and it will be interesting to see what they say. We have come so far in one year and I really hope they will be quite positive. If you have any worries or concerns, give Robin a call. He is incredibly supportive and really does understand how full on it can all be.

Daft - it sounds like you had a very busy half term! I didn't realise that your DS had a nut and egg allergy - my DS does too. Hope that he is on the mend and that you don't have to see any more of hospitals for a while.

Nellie We did AIT before TH. I knew DS had audio probs (emotional response to loud noises, stressed all the time, hated parties, cried at sudden loud noises on TV, couldn't focus if someone else in room talking). Made a big difference- loved fireworks this year, likes music, not so stressed about everything.
Like you, no behavior probs in school. Eye contact issues improving now. We went to see an occupational therapist last week. Turns out sensory perception probs. She described as DS being unsure where his body is in relation to everything else. So, holds my hand tightly, doesn't like trying new things, doesn't like playing games with lots of other kids (as they might bang into him).

Its an area I had briefly looked at (then decided lits of other more pressing issues (dyslexia)). I think there are many different parts of the 'jigsaw' but all kids have slightly different (though overlapping) needs. And maybe different treatments work for some and less for others.

We have also gone gluten free and I feel this has helped enormously with brain function and clarity of thought (most of the time!). I feel TH probably addresses the most issues (we have been doing it for a month) apart from audio problems.

I have been delighted with TH but also recognise that it is a very powerful therapy. I know some have done RRT before TH and have not regretted RRT as it helped and set them up for TH ( IYSWIM)
Mango- Well done for doing GF. I know my DS would have benefited from GF and probably DF too but it was a step too far for me. I decided that I would only go down that route if his progress stalled. I would definitely recommend BioKult probiotic, especially for those who are not GF or DF. It has made an enormous difference to my DS who was a fail to thrive baby and had terrible feeding issues as a baby and still significant problems until he was 6.