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

Ah, I see.
Sorry, I do lose track of who is who!
My son did rrt and I really rate it :) also ait.
Glad the computer programme is helping.
You could also look at lumosity games? It's a brain training programme really but works in improving memory, attention, flexibility etc...all depends in what your ds needs help with.
You may also find your sons handwriting improves due to better spatial awareness and 3d vision.

Yes, his writing does seem to be getting better. I'm not sure if that is just a coincidence.

I looked into lumosity - but could not find anything that I could access ... do you know of anything in particular, Badvoc?

What is ait? I have never heard of it.

Thank you.

Ait = auditory integration training
It basically cured my sons hypersensitive hearing and reaction to loud noise.
It was a 10 day course so quite intensive but once it's done, it's done.
Afaik you can get a 3 day free trial on lumosity?
That's what we did before we subscribed. Cost £50 for the year.
Www.lumosity.com

If you have an iPhone, ipod touch or iPad you can download a free app from lumosity but I don't know how this compares to the paid for program that BV has.

I guess it might be available on Android too.

Prince...at our second visit robin did some tets on Tom - repeats of the first visit...physical exam etc.
Then he did a visiograph to check out his vision.
Did you get any feedback from the EP?

Poor old Tom has got a cough but its assessment week so I have sent him in.
:(
Hope that's the right thing to do!
He is ok in himself...played football all Sunday afternoon, but is definitely below par.
And dh goes away tomorrow...sigh.
Today I will mostly be ironing which always puts me in a foul mood...grrrr

Hi,
Have just read through the thread and wanted to introduce myself before our visit to Robin next week. DS1 suffers with tics and mild dyspraxia. DS2 - tics, anxiety, OCD, ADD and dyslexia. I recently read through Robin's book and am flipping between feeling hopeful and feeling very skeptical about the whole thing! I guess what is playing on my mind is that the diet seems to play a large part in many children's improvements but although we are certainly not angels DS2 would list his favourite foods as broccoli, lettuce and watercress! He is not hyperactive in any way and so I wondered whether any subtle change in diet will be of benefit? It seems those that have had great results have been the children with hyperactivity and if anything DS2 is very reserved and contained. I am trying so hard at the moment to not get my hopes up only to have them crash back down again! I realize it will be a long process but just a small chink of light at the end of the tunnel would be great!!!

Hello and welcome.
My son was not hyperactive at all.
His issues were primarily dyslexia, dyspraxia, ocd and asd traits.
His diet was also not bad per se, albeit carb heavy.
Good luck! X

No feedback from Ed psych. Will try and call at lunch time.

Itwillbebetter. The diet is very protein rich which helps the synapses respond to one another better. So you may have a healthy diet already but it possibly isn't particularly high in protein. Ours wasn't. Also the diet only plays a part in the treatment programme. We have followed the diet much less strictly than some other families on this thread but have still have fabulous results. I think omega 3 and the exercises are what has changed ds' brain.

Hi everyone,
this is my mumsnet day. I read different threads on here but never post i recently joined but still didn't post and now i have posted on 3 threads in one day. Now i am going to start my own thread when i get enough time and hopefully get some much needed support from everyone who knows what i am going through.

Anyway, I wish I could say I have read the whole thread but I am afraid I just do not have the time at the moment. However, I have been very impressed with what I have read so far. I emailed Robin a few weeks ago with regards to my son. Today I have had a phone conversation with him and I am more interested now than ever in going down this route.

A bit of background: my DS is diagnosed with Tourette's and ADHD and is being assessed for ASD he is 6. He displays very challenging behaviour which has a huge impact upon our family life: my DH,DD,DS and I. However, as much as it is difficult to see our son this way we have adjusted as much as we can as a family. Unfortunately, school cannot manage this or him and we are forever receiving calls and having to go and pick him up.

For the time being we are against meds for our son. We do not judge others choices though and we know people dear to us that have gone down the route of medication. It is a personal choice and we don't think it's an option for our son. So this has led us to alternatives and here we are.

We are also thinking about DR Goyal although Robin has said that the gut issues are usually only prevalent in those with severe asd symptoms. Not sure if anyone can offer opinions experience on this. I will now be discussing my talk with Robin with my husband this evening and see where we go from there. Also finances are an issue it is expensive enough living in London (we are relocating in the summer, that's another thread entirely) with 2 children, with all our outgoings it will be difficult to find spare cash however we will do it if it could mean a better life for our son. Saying that we have to be really sure about it because if it is all nonsense then we really cannot afford to spend what we don't have iykwim.

So I guess why I am popping up here is so that I can get some direct info from those who have gone down this route. Whether it be good or bad I would like to here it as you cannot beat hearing of others similar experiences and I would like to make an informed decision and not just jump in eyes closed.

Thank you in advanced for anyone who is willing to advise me or share their experience. Oh and one more thing those of you who are well on their way into the treatment if you don't mind me asking how much money have you spent so far as we will have to know the maximum costs involved.

Hello unimama and welcome.
I am sorry for all your worries about your son, but can understand some of what you feel.
My son is nearly 10 and has struggled in one way or another since he was a toddler.
We began the TH programme last January so it's been 14 months now.
We are very happy with the results so far but of course they are relative to our sons problems.
Results we have seen:
Better sleeping
Better eating - he is now growing well and no more stomach problems
Less anxiety
Less OCD traits
Less asd traits
He is now doing well at school and we hope that by the time he starts middle school in sept he will be off the sen register
I looked into things like dyslexia tuition etc but it would cost ££££ and he would have needed it long term...for years.
The supplements cost approx £15 per month.
We do Skype appts with robin now as we live some distance away and they cost £70 each time (every 8 weeks approx)
The visual computer programmes are £50.
Out grocery bill has gone up too as we now eat more meat.
I would guess that we have spent £800 up to now.

Thanks Badvoc,
What were the main issues for your son? For my son at school it is hyperactivity, anger (he has big explosions), focusing on work, writing, following rules as he extremely rigid, silly clown like behaviour and his main trigger reacting (irrationally) to unfair situations.

He is an extremely intelligent 6 year old boy however his academic ability is suffering somewhat from the school not being able to support his needs. We are doing a lot of extra work with him at home with math and writing as he was the top of the class in math in the beginning of year 1 but has now fallen behind as he just messes around in lessons. His reading is above average and always has been it is just putting things down on paper (writing) that he is opposed to. I can understand why the school struggle so much and without one on one support I can't see much point in him continuing he is not learning much other than he is the trouble maker.

Has your son had similar problems and have they been much improved sorry I know you wrote results you have seen just from what you said your sons difficulties sound much different so just wanted to see if you had any others similar to my sons.

Glad to hear you have seen improvements it much be such a relief.

My sons main issues were his dyslexia, anxiety and asd traits.
No behavioural issues as such.
But he is a very bright boy whose self esteem was at rock bottom due to thinking he had a - in his words - "stupid brain" :(
It's pretty heartbreaking when your 5 year old tells you that.
His writing was also a big problem, but he is now one of the best in his class :)
I explain the improvements by saying that my son is the same as he has always been but that he is no longer locked inside his asd/dyslexic/OCD prison.
I know of many people whose children have had quite severe behavioural issues who are doing very well on the TH programme.
And the sooner you start, the better!
I wish I had...

...and yes it's a huge relief! :)
It's like he can finally be who he is, not who his symptoms dictate, if that makes sense?

Thank you for sharing, that sounds very positive. Could I ask who are the others on the Tinsley House programme who have had similar issues to my son? Would be really helpful to hear from them.

Badvoc - when you talked about your Son being inside his prison, it summed up exactly how I feel! My poor Son also thinks he is stupid and it was almost a relief when we paid for a private Ed Psych report which, although it highlighted his dyslexia and ADD, it also found him at genius level in the top 1% of the population! But he is still being dictated to by his symptoms and locked in the misery of rituals and habits. :(

Am sure some of them will post soon unimama...
Itwillbenetter - well, my son isn't a genius! :) he is just a sweet bright kid who was failing at school and didn't believe in himself.
Even if bolstering his self belief was all we got from TH I would have been happy. As it is it has had a very profound effect.
Last year he was on the NHS waiting list for surgery on is stomach (unexplained pains and bleeding from his bowel). He was below average on the NHS growth charts - always the smallest in his class etc.
He now has no pain, no bowel issues at all so TH has saved him from unneccessary surgery :)
He is now on his second lot of school uniform since sept :) he is growing before my eyes!
It's so hard to quantify the results we have seen. He is more confident, happier, he sings! And dances! He is just...him. At last.

Ah yes.
Rituals and habits.
We had those.
We still have to some extent in that he is like my husband and very set in his ways! :) but that's ok.
I can handle habits as long as they don't affect him enjoying his life.

Thank you Badvoc for the lumosity info.

Is it best to wait until we've completed engaging eyes ie smack and alien and target practice, before starting lumosity?

I feel that it would be too much for DS to do even more computer stuff. He is still getting the hang of target practice and we do 45 minutes of RRT and OT/physio a day ...

Unimama my son sounds similar to yours. A year ago I was called into school because he climbed the furniture, drew on chairs, hit other children and refused to participate in half the curriculum. A year later and we've changed schools and been doing TH since June. His teacher last night said she treated him in exactly the same way as all the other children. There have been no behavioural issues whatsoever since he started school in sept and he's made massive progress in writing particularly (he totally refused to write a year ago). He still has melt downs at home but they are much less frequent and much more manageable and rational.

Badvoc -sorry for the shameless genius puffed up moment :) It was such a great day when he saw himself described that way on paper! He has no self belief at all and if we can gain that and only that then I'll be a happy mummy! It's funny as he does not suffer with his stomach to the extent of your poor Son but he does have constant stomach pains and does not grow at all. Its great to find this thread and read about all your experiences because as a parent I too feel trapped in the prison and isolated and yet it seems others are going through it too and coming out the other side. Thank you all x

shoppingbagsundereyes - thank you for the tip about the protein, having carefully watched what DS2 eats I think protein may be falling short!

The big dietary change for lots of us was to make sure they eat protein for breakfast (so cereal and toast not good enough) and to reduce carbs and sugar as much as possible. Lots of us were already avoiding e-numbers.

We were not using supplements before seeing Robin for the first time either.

Itwillbbetter...don't apologise..we love boasting on this thread :)
It's the one place on MN where you will not be criticised for it!
I have done quite a lot of reading around the diet side of things and its really interesting...if you get the chance read escape the diet trap by John briffa and paleo diet.
Pretty eye opening!
Wrt lumosity...best to leave it until ds has completed the engaging eyes stuff.
I get my vegepa from amazon on the subscribe and save thing. It works out about £9 per month.