Here some suggested organisations that offer expert advice on SN.
NEW Tinsley house support thread -part 2!!(977 Posts)
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
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
Ea ruggles is spot on.
It has to become part of your day, whichever part your ds in at...so exercise, computer programmes etc...
ruggles that was very helpful and positive!
I've just spoke to dh and he said lets do it!
We can only try!
Thank you for understanding my concerns.I know I sound selfish,
I spoke to him this afternoon again and asked if ds needed to be off his meds?he said no,as that was worrying me to!! alot!!
he said we can wean him off them whenever we are ready at any point of the programme
That is really great news Crazygal. Best of luck and I hope you get some fab results with it all.
It is hard work at times but then so is dealing with our dcs behaviour at times!
The dietary changes haven't been plain sailing with ds but we do stick to things as much as possible - with a few more treats than we should, probably, but. Do notice a difference when he has had a sugar burst!
Things are still up and down but, recently, the lows have been much 'less low', iykwim.
It is great tha your Dh is on board, that will make life a lot easie over the next 18months.
Badvoc, how is your mum this evening?
How did the vision therapy part of TH's programme help your children?
My DS has mild cerebral palsy and I try out bits and pieces from Robin's book and from what I read on here - mostly the supplements and some of the food recommendations.
DS has a squint and does not have good/any depth perception. Only one eye works at a time, I think.
I've just bought the target practice and whack an alien that was recommended on here.
DS seems to be doing OK. He says that with the target practice the gun/shooter thing is moving side to side when he presses the forward and back buttons. But he is also managing to aim and make them disappear.
I am guessing from what he says that he cannot see the whole thing 3D. But he seems to have a method of lining the gun and target up - I don't know how he does it.
Did any of your children start like this and then progress to seeing in 3D?
If we don't see Robin how will I tell if the program is helping him? Do you think a regular check up at Moorfields would pick up improvements?
Crazygal - that is great news. As you say, you can only try and you will never know if you don't. You don't sound selfish, just sensible. It's worth checking out something before you start, esp when it involves a daily commitment. Keep visiting us here, there's so much support - it's been such a help to me, I don't feel on my own and a bit like a diet club, I think , it helps motivate me to stay on track. Agree with Daft, that having DH onside really helps.
Hello Skewiff - I'm afraid i don't have any experience of the programmes you mention but am sure a helpful soul will be along soon.
Badvoc - hope Mum is ok. When are you going off MN?
Hi Skewiff, my ds used a different programme from the one which you are currently using (did the same thing but our one much more expensive!). You are using the coloured glasses aren't you?
We knew the programme was working because, at the start, it made his eyes hurt (so using muscles differently) and his scores improved on each section.
Ds also improved markedly on NVR exam papers at school that he really struggled with originally (from 25%-75% in a couple of months). Some dcs also reported that he were seeing much more clearly too - like something had cleared from their eyes.
You could try calling moorfields and ask someone there. I would be fascinated to know what they think of the programme.
As said upghread you can have skype appts with robin and phone calls are free!
Tom is having his eyes tested tomorrow....results might be interesting!
I am offline as of tomorrow
Daft has my e mail and i am quite happy for her to pass it on if any of youbwant a chat
Mum was ok last night but in pain...th4y were sriting up some oromorph just before we left.
Hope you all have a good few weeks, and that your dc continue to make great strides!
Love to all x
Thank you all...
Does Robin help you with the diet? ie: ae you given lists on whats in and whats not?
Or are you left to educate yourself on it all?
Yes dh is on board,he just said no holiday though,which is fine! i'd sooner get ds sorted.
The diet is specified in the book the brain food plan which is available on amazon. I would lend you mine but its on my kindle. It has recipes in too.
It's not complicated, really.
Less carbs, no junk, more protein, fruit and veg and supplements.
Also you need to be more aware if E numbers and additives.
Some dc are really really reactive to them.
And NO sugar!
The biggest change for us was to make sure ds had protein for breakfast. So, eggs, bacon, sausages, fish, other meat or cheese. NO toast and jam or cereals (occasionally ds has porridge) and definitely no sugary cereals.
Sausages must be good quality and homemade cake/biscuits twice/week. Check school lunches to see how good they are in terms of processed food.
If they have pasta for tea, it should be with a meat sauce. Home cooked food best, no ready meals, pizza, etc.
Some are doing gluten free and casein free but that is not on Robin's recommendation. That is a step too far for us!
Badvoc, hope your mum's painrelief has now been sorted out? Any ideas how long she will be in hospital?
Hi daft. 4 days ish I think.
Will phone her later and see what sort of night she had. She has 2 wound sites which make things a bit more complicated.
I have a funeral later on today so will phone after that.
And a friend is having an ERPC today so all in all a pretty rubbish day
Crazygal....As daft says, it does mean cutting out processed food.
We are not as strict as we should be wrt pizza etc but ds has never eaten sweets, cake, fizzy drink ect so we felt he had to have some treats
We have GF pasta and have switched to brown rice for example.
He doesn't have milk anyway.
Breakfasts tend to be either egg, cheese or bean based
As a treat he sometimes had pancakes, and these can be made with GF flour if you want.
Hi all. Been away for the weekend and my this thread has been busy! Welcome to everyone new and good luck!
Crazy gal, re kids being compliant, my ds was the least compliant child I had ever met ( and I taught teenagers for ten years pre kids!). We used bribery a lot initially but as we've got further along the programme he has become so much more reasonable and compliant that we find it pretty easy to get him to do the exercises etc. your ds is probably old enough to notice some differences between him and his peers or to notice he gets into trouble at school etc. the incentive to improve that may help him comply.
The food side was much easier than I expected. Protein breakfast has become completely normal to ds. Scrambled egg is now is favourite meal. I was worried about ditching squash as both dcs drank it all the time. They didn't even comment. I have reduced sugar considerably but not by as much as Robin recommends. We always had home made meals anyway so have just upped the number of times per week we eat fish and roast dinner (twice a week each now, whereas it was weekly before).
Ds is a changed boy. My life is immeasurably better and easier. I know it's about helping our dcs but goodness it feels good to have my own life calmer too.
Well all, am off for lent
I hope I manage more than 2 weeks like last year!
You could always NC if you come back early. No-one would ever know
Pancakes inhaled and general consensus, yet again, that lemon and sugar is the best! Sorry Robin, bit too much sugar consumed this evening. Oops!
Cheese and ham are my favourite! Badvoc - hope all well with your Mum. xx
Hi. Been really interesting reading all your posts and positive experiences. We too are on the TH program and started around 3 months ago. Had a very positive first meeting with Robin - really seemed to know his stuff and DS responded well to him. We have been following the program daily (diet and excercises) but are disappointed to have not seen much change. Infact his behaviour and confidence seem to have taken a step backwards. Not sure if we are doing something wrong as it seems like we are the only ones not to notice a great change. Will keep persevering but its a bit demoralising at the moment: Wonder if there are any other mums who had a slow start???
Badvoc- So pleased that your mum is safely through her op. Hope she manages to get the pain relief and rest she needs.
Crazygirl- We started TH on 31 July. My DS (6.5 yrs then) with dyspraxia, dyslexia and ADD was very anxious and difficult. Robin gave us stairs, teeth and vision therapy to start but we didn't manage to start the vision therapy for 2 months as he whacked the computer screen, screamed etc etc. It was very hard to start with and a massive challenge to get 3 sets of stairs and 2 teeth in every day. I resorted to blackmail to get them done ( I am sure some would disapprove) but as he got more compliant and felt better he just did them. Crazy- it will be hard to start with but is so so worth it. You can't do nothing. This thread helped me so much, and we are all here for you everyday. We all know how tough this can be but it has transformed my son's life and within 6 weeks everything was so much more manageable. We found the diet less tricky. My DS eats fish fingers, baked beans and a fried egg every morning and now loves it. Dinner is often roast chicken. I like many others on this thread do more than Robin suggests by way of vitamins. particularly zinc, magnesium and b vitamins. I also do selenium and probiotics.
Skewiff- My DD has done " Engaging Eyes" and my DS did the programme that Robin used to prescribe. (It just so happened that we were prescribed this just as he was switching over) Target practice is amazingly powerful and my daughter made rapid gains. It is possible to shoot the targets without wearing the glasses but that does not sort the eyes out so you must make sure your DS is wearing the glasses. If he is wearing the glasses he cannot " cheat/work it out". If he is not shooting the targets successfully it is because he can't see they are 3d. I suggest he stares at the screen for a while and stretches his eyes and eventually they will become 3d. It can take a while, maybe even a few weeks before they become3 d but do persevere it will happen. If you want to talk about it then PM me but better still call the Engaging Eyes helpline. They are very helpful and understand the challenges our children are facing both in terms of their vision issues and behaviour/anxiety etc.
Ruggles- So pleased your DS is still making gains but sorry the probiotics are proving tricky.
I am feeling so positive about my children and Tinsley House. My DS behaviour is transformed and he is so much more mature than he was. He is also coping so much better at school. I am crossing my fingers and holding my breath about his reading and writing. Robin expects him to start making gains in that department very soon now. Will keep you all posted....
DD was simply amazing at choir today. She managed to follow a really complicated service, turned all the pages at the right time and I didn't see her staring around at all. Also no more "der brain" comments being made by classmates. Whack an Alien is really helping her attention.- another great proramme from Engaging Eyes.
AlfieandzoesMum - we have had a slow start too. Well, it's just not been as amazing as some others. We were already doing fish oils and her diet was already very good (and I think these things have made a difference).
We were given chair and stairs to do.
I would say that a change we could (?) say has happened since we started is that DD now self initiates the toilet and we have significantly fewer accidents. So that has been brilliant.
In terms of her concentration, speech and motor planning and processing I wouldn't say we have seen any improvement and like you have in fact gone backwards.
However - like you we are persevering. We will see what Robin says when we go back in March and see where we go from there.
When talking to DH we feel a little underwhelmed, but not prepared to give it up IYSWIM?
Alfieanddoziesmum - hello and welcome. I am going to say, try not to worry too much about a slow start, but I know how difficult it is when people say 'don't worry' - I know this as I am an expert worrier . We started at about the same time and Robin warned us that it may take up to 6 months to start seeing some significant benefits. We have been fortunate and seen some big improvements early on, especially when I look back at our description of DS in November. I have to keep the 6 month thing in my mind though as I do wish that DS would stop hitting and pushing other children. I've just emailed Robin about it and he says they normally stop later on. We had a big set back in early Jan when things went downhill for a couple of weeks. Since then we have made really sure that the exercises are being done with a view to making them better - i.e. more stair reps and doing them 'like a soldier' and making sure we are looking around the room as we do the chair. We use lots of bribery too! How old is your DS?
Beautifulpossum - great to hear about the choir and your DD's progress. I love the sound of Whack the Alien and all the Engaging Eyes programmes.
Prince - hang in there! I think it sounds as if something good is going on as the loo stuff does take attention and concentration. One of the first improvements we saw was being dry at night. Will be interesting for you to see Robin in early March.
Hàd our Skype with Robin this afternoon. Ds is going to continue with hemi p and t and start hemi opk. This should help with the constant daydreaming (fingers crossed)
We are going to TH this weekend and I wondered if some of you could help with the logistics.
We are flying into Southampton then getting the train. Is Brockenhurst train station close to the centre of Brockenhurst? Are there cafes etc? We arrive into Southampton much earlier than we need to but there aren't later flights. I'm wondering whether we kill time at the airport or in Brockenhurst, though the airport is tiny so probably not. I'm sure Robin said he'd organise a car to take us to the clinic. Any advice or experience anyone?
Lookslikerain - I'm afraid that I haven't been to Brockenhurst so can't help much with what there is to do. Nearby Beaulieu is quite nice - tiny, but hotel with bar / restaurant, also a cafe and pond to look at or the Motor Museum. How much time do you have to spare / what time of day? Just wondering if you should head for Beaulieu or perhaps Southampton?
Hi Ruggles. We're coming down from Scotland on a really early flight because the next flight is too late for our appointment. We are doing it all in one day. A long day, I know, but we're leaving baby DD with family and need to get back for her. Robin said a car would be able to pick us up from Brockenhurst station (getting a train there from Southampton airport) so I thought we might be able to have a wander round Brockenhurst, get a coffee etc. I'm getting a bit nervous about going now.
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