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NEW Tinsley house support thread -part 2!!

(977 Posts)
Badvoc Fri 21-Sep-12 20:05:07

Hello everyone!
Thought I should start a new thread as we were nearing 1000 posts! smile
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 smile
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

Badvoc Tue 26-Mar-13 12:21:12

Zzzzz...ds1 diet was hugely restricted at one point so I do empathise sad
People are only trying to be helpful but I got a lot of "he won't starve himself just don't humour him" comments is hard to understand if you haven't been through it so flowers to you x
You can snip the vegepa and take the liquid's quite nice!
It really helped me to know that lots of our kids have restricted/limited diet and are carb addicts!
Lookslike rain...ds has beans on toast and posh cheesy muffins for breakfast when he doesn't have egg.

itwillbebetter Thu 28-Mar-13 08:35:02

Morning all,

We are 3 weeks in and are feeling distinctly underwhelmed. Dc's have taken to the programme with no fuss and diets, supplements and exercises are in place and running like clock work BUT nothing has happened. I cannot see any slightest hint of improvement. I know some of you have had slow starts but I also know that some have had massive improvements so I guess I'm a bit jealous sad

On a different note has anyone found tablet replacements for the kinder vital and saludynam? We are off on hol's soon and don't want to lug huge bottles around particularly as we may not have access to a fridge.
Hope you all have a lovely Easter xx

Badvoc Thu 28-Mar-13 08:48:04

Hi itwillbetter.
We did not see huge improvements straight away tbh.
And sometimes, the improvements sort of creep up on you! smile
I would think that by the time you go back to see robin and the dc are examined again robin will be able to see improvements even if you can't.
Happy Easter x

Badvoc Thu 28-Mar-13 08:48:50

Oh, and I use mag and zinc tablets from holland and barrat rather than floradix as ds prefers tablets to liquid.

PrinceRogersNelson Thu 28-Mar-13 10:19:16

We didn't see huge improvements and I was underwhelmed. I think it's important to know it is not a quick fix! I decided to stick to it for 8 weeks and see what happened. We went back to robin told him not much had changed, he re tested her said things had changed.

We went home and bam! Things have got progressively better.

DD goes to her first swimming lesson tonight. She had her first session with OT who had an aim if completing a 4 piece puzzle and DD did a 9 piece.

Stick with it. And good luck!

shoppingbagsundereyes Thu 28-Mar-13 12:35:06

Stick with it itwillbebetter. I think if you can't see improvements by the time you go back to Robin then maybe it's not for you, but I think you will see changes. Ds' retained reflexes had disappeared in the first 8 weeks, we hadn't noticed any change in that area but it was really obvious when Robin tested him.
Try the arms waggling exercise and see if there's any difference. I was amazed by the huge difference when ds did that one. You know the one where they hold their arms out straight in front and turn them over and back again and again. Ds' arms were completely out of sync really quickly but after 8 weeks were virtually in unison.

PrinceRogersNelson Thu 28-Mar-13 17:39:39

This thread isn't showing up in Special Needs children. It's on TIO, but when I go to the list in Special Needs:Children it's not there.

Weird confused

PrinceRogersNelson Thu 28-Mar-13 17:40:37

And we're back! grin

Curiouser and curiouser....

Lookslikerain Thu 28-Mar-13 20:55:46

Prince I noticed that the other day but thought I was just having a sleep-deprived moment!

itwillgetbetter We are about 5 weeks in now and while there have definitely been some changes, they are small and I can't say for sure that TH has been the cause. I've felt they were things that were sort of coming anyway. But I think Badvoc is right, it kind of creeps up on you. My DS's speech seems a lot clearer and something about it just seems slightly more "normal". It's hard to explain but I feel like we're moving in the right direction.

Okay, need some help with the breakfast thing again. I'm really struggling to get the cooked breakfast into him. My question is, is there a difference between the protein you get in different types of food? For example, is meat/fish protein better than milk protein? DS loves porridge made with milk and I've calculated that there's roughly the same amount of protein in this (plus he has a cup of milk when he wakes) as in 3 fish fingers. I think I'd have more luck with porridge and fish on alternate days. The more I push the cooked breakfast, the less of it he eats. Argh, 3 year olds! They can be so wilful!

Badvoc Thu 28-Mar-13 20:58:39

Well any protein is better than none!
Will he eat cheese?

Lookslikerain Thu 28-Mar-13 21:25:23

Hi Badvoc. He does do cheese and has had cheese on toast with beans. I wish he'd eat egg! There are so many things you can do with eggs, but it makes him gag unless its in something like pancakes. I think it's a textural thing. I tried scrambled eggs for tea the other day and you've had thought I'd poisoned him! grin

shoppingbagsundereyes Thu 28-Mar-13 21:58:33

Overcooked omelette cut into strips? I like my omelette quite solid, like frittata. Do you reckon your ds would go for that? Advantage of frittata is it's tasty cold too so will do a couple of days.

DaftMaul Thu 28-Mar-13 22:31:37

We seem to go through phases with breakfast. It is the most difficult meal of the day for us and my ds is 11yrs! He seems to have very little appetite before school, weekends are easier when he can eat later.

We have tried (each successfully for a while) - part baked baguettes filled with cheese or sausage (hotdogs) or ham, sausage and baked beans, beans on toast, porridge, smoked salmon, sushi, fried egg with toast, bacon, pancakes (at weekends as a treat because they get covered with syrup!), Blt sandwich, Brie/goats cheese on crackers/baguette, sausage rolls. There is probably more but can't think of anything!

I can't believe it so still so cold! We seem to spend all our time at the cinema, the park is just too chilly!

PrinceRogersNelson Thu 28-Mar-13 23:05:32

We had eggy bread this morning. Would he eat that? Doesn't really look like egg.

Badvoc Fri 29-Mar-13 07:23:32

Oh! yes eggy bread!
You could use something like pannetone or brioche and then dust it with icing sugar (I know, I know) so it's not so eggy?
Although that's more French toast than eggy bread!

itwillbebetter Fri 29-Mar-13 18:03:38

Thanks all for your words of encouragement, we will persevere. They are better with the stair exercise and I can see that it's made them less wobbly, it's just anxiety and OCD in ds2 is not diminishing at all. I think I remember robin say that this was one of the last areas of the brain to improve so I guess we keep plodding on.
Patience was never my strong point smile
Thank you all x

Ruggles Fri 29-Mar-13 18:34:02

We do lots of leftover meals for breakfast - they don't seem to notice anything different and it quite often uses stuff up. This morning they had chicken casserole with veggies!

Itwillbebetter - our progress was really rapid to start with, but then we had a plateau for quite a while before another burst - it was really exciting, then frustrating and worrying then great... I think its just different for everyone. I made a list of issues and challenges before our first meeting and keep going back to it - it's great for those days when I'm not feeling as sure. We have come so far in 4 months that its almost difficult to remember just how bleak things seemed for us in Oct/Nov.

I have gone a little bonkers over easter this year so am busy decorating the kitchen with bunting and a pussy willow egg concotion. I have been creative with our first cut flowers from the garden Schleich figures to make a mini-tableau. Not forgetting, bunny helium balloons for the egg hunt. I'm half way through a lamb cake decorated with mini-marshallows, some easter bunny biscuits and am going to attempt my own egg-free hot cross buns. DH eyes are on a perma-roll circuit but the DCs and I are having great fun.

Happy Easter everyone.

Lookslikerain Fri 29-Mar-13 18:47:58

Thanks all for your suggestions. I am going to try eggy bread with some yummy homemade fruit loaf tomorrow morning. I think my son is just too conditioned to think that breakfast is porridge or porridge!

Hope you all have a lovely Easter. I am home alone with the DC until Sunday night as DH is away for the weekend. And to make matters worse, I think the DC are coming down with another cold though I think they infected DH before he left, tee hee. DS doesn't really get the Easter thing so I haven't even mentioned chocolate eggs, though I'm sure I can deal with any they are given. grin

We're currently sitting on the soda watching ITNG garden where makka pakka's ogg-pog (how do you even spell that?) runs away. My supposed autistic son is laughing his head off at it, turning each time to catch my eye and laugh with me. Lots of lovely joint-attention! It's lovely.

Badvoc Fri 29-Mar-13 19:16:12

Oh! I love Macca pacca! I don't know why, but the fact he cuddles a stone at bedtime really makes me emotional whenever I watch it blush it's just so sweet!
Am doing an Easter egg hunt for the dc and their friends tomorrow afternoon.
Went to a Good Friday service today.
Hope all have a very happy Easter x

Beautifulpossum Sat 30-Mar-13 22:13:42

Happy Easter everyone!

This year seems to be racing by and things still going very well here with my 2 DC and the TH programme. DS now enjoying drawing and even started writing stories. shock He is now leaving finger spaces and using vowels ( well, some of the time) and he is reading far more confidently and far less reluctant to read. I really think that he is very close to being able to learn normally and then hopefully with a bit of recappng over what he has missed ( due to his dyslexia) things will be relatively straightforward for him in the future. We went to Robin on 10th march and DS now doing teeth ( have been doing this for 8 months now!- wonder if this is a record??) Wheres Wally and Wordsearch. No moaning from him ( other than teeth) but noticeably better than DD on Wally but worse on Wordsearch. DD now doing Wally ( again), Wordsearch and Hemi OPK.
Really looking forward to the meet up. Just wondered if anyone was interested in an in door contingency just in case it is too cold/wet for Windsor Great Park? The Butterfly Farm in St Albans has just reopened after Winter and is relatively inexpensive? Spoke to Indigo who thought that was a good alternative.

Badvoc Sun 31-Mar-13 09:30:22

Happy Easter BP smile
All sounds great from your end!
I noticed that Tom started to enjoy drawing and writing stories for the first time after starting TH. it's great isnt it? smile
With toms illnesses over the past month we haven't been as trick with hemi opk and lumosity as we should have been but back to normal tomorrow!
Ds1s lumosity scores seem pretty good, except for flexibility and problem solving - no idea what this means....will find out in Thursday!

UniMama Sun 31-Mar-13 23:21:00

Hi there, so we went to see Robin today. He was lovely, he had my children in hysterics. I am still a bit confused about exactly what he said is going on in my sons brain. However, we are starting with the exercises from tomorrow and we have already started protein breakfasts since last week.

My son really loves his porridge, it took some convincing him that he wouldn't be having porridge anymore. The first few days were better than expected, but on the 4th day I got up to see my son already at the table eating a bowl of porridge which he had got up and made himself in the microwave (yuck) it was not even made properly had far too many oats not enough milk. The expression on his face though was of complete bliss.

We had a fantastic day in such a beautiful area, after getting there in the morning (yawn) we had the rest of the day to enjoy our picnic and Easter egg hunt. We all had a fantastic day and apart from my sons tics today he just seemed like any other boy, happy, playful and even well behaved. Thank God for the Easter holidays I feel like I have my son back. Dreading sending him back to school already.

So here we go, setting off on this Tinsley House journey with you all. Sorry I have not responded to earlier replies, I have been at Uni writing essays like my life depended on it. Today was my only day off I am back to the library tomorrow.

I will pop in again in a few days and let you know how it's going :-)

UniMama Sun 31-Mar-13 23:23:41

Oh, and hope you all had a wonderful Easter Day.

Ruggles Mon 01-Apr-13 07:33:34

Hello everyone - hope you all had a great time over Easter.

Easter has been fab, and like lots of you I really enjoy the holidays so much - relaxed children and DH at home too. We've had a great time, although DCs had teatime treats and limited amounts of choccie (we did Lego instead) - by last night it was too much for them and they just seemed to unravel. Really interesting how a couple of days lapse can affect them. Clock change too. I think I enjoyed Easter so much this year as I feel much more relaxed and happy about my DCs than I have felt in ages. Worry is such a corrosive strain and them feeling better is making me feel better too. smile smile

Lookslikerain - we love ITNG too. Your post made me feel nostalgic for it and I will see if I can plus some for DD - she has never seen it and will love it! How are the breakfasts going?

Beautiful - great to hear the good news. Not sure if that is a record on the exercises, but it does sound like a long time. Just looked up the Butterfly Farm and think it looks really great.

Unimama - really pleased that you got on with Robin. The dcs seem to love his jokes wink. I'm glad you all had such a good day. Good luck with starting the programme.

shoppingbagsundereyes Mon 01-Apr-13 08:01:27

Glad all seems to be going well for everyone smile
I'm very pleased with the butterfly park contingency plan as it shaves about an hour off my journey.
My kids have been lovely so far ( only broke up on thurs tho!). We bought them Cluedo as an Easter gift and we've had such fun playing. Both dcs are hilarious, flashing their secret cards around but have played so nicely. I ditched board games with ds when he was 4 as he wouldn't take turns, refused to play by the rules and screamed if he didn't win. Fast forward and he played beautifully and was pleased for me when I won yesterday smile

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