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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
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

Ruggles Tue 11-Dec-12 16:31:17

Indigo - didn't realise that eyes had to be shut for the spinning chair exercise! Thank you. Also, never sure about how slow / fast to go.

IndigoBelle Tue 11-Dec-12 16:55:11

No, you're right. Eyes should be open. blush sorry.

None of my 3 have been given that exercise by Robin, so I don't know how slow to go either.

mebaasmum Wed 12-Dec-12 17:43:05

Have been reading with curiosity for months, read all three books, doing stairs and diet /supplements but somehow can't quite make myself book an appointment with Robin. Both Ds have nystagmus and an eye condition which means they dontg have binocular vision. Opthalmologisy doesn't believe in benefit of exercises for eyes. Half of me wants to take leap and half anxious

Badvocsanta Wed 12-Dec-12 17:44:48

That's understandable mebaasmum.
It took me a few months to get. The courage to phone robin and make the appt.
Fear of the unknown?
Fear of what happens if TH didn't work?
I don't know.
All I can tell you is its the bet thing we ever did.
X

IndigoBelle Wed 12-Dec-12 18:27:18

Mebaasmum - my DS had very mild nystagmus (it was intermittent rather than consistent) and it has been vastly reduced. Last night he said to me his eyes have only wobbled while at school twice this term.

I don't know if Robin can help your DCs nystagmus or binocular vision but even if he can't he'lll be able to help his cerebellum (gross motor skills), attention, and pre frontal cortex (empathy, social skills, memory)

Ring or email Robin and ask what he thinks.

What do you have to lose?

IndigoBelle Wed 12-Dec-12 18:31:43

I have the biggest boast ever - DD learnt to spell neighbour smile smile smile

Her last years teacher literally couldn't believe it when I told him. So she showed him and he gave her a big hug and said "that's the best Christmas present ever"

Only took her one go to learn it as well. It is so unbelievable.

Last year her target - for the whole year - which she failed to achieve, was to learn how to spell like and looked

Catsdontcare Wed 12-Dec-12 18:35:26

smile that's fab indigo.

Whilst we are having a bit of a boast found out today that ds did a picture of a face today, totally unprompted. His current target is to try and convince him to at least pick up a pencil and make a mark such has been his refusal to do any kind of mark making!

IndigoBelle Wed 12-Dec-12 18:41:29

cats grin that sounds amazing as well.

Badvocsanta Wed 12-Dec-12 20:18:39

Great news cats and indigo smile

Hello all, sounds like so many of you are having a fantastic end to 2012! Am meant to be catching up with work tonight (unread inbox 300 and counting..), not to mention going through ds's proposed statement, but it's so much nicer to have a sneaky catchup with everyone's news.

I dont know about anyone else but when I look back on 2012, the thing I'll remember is finding TH. I know everyone says how fab Robin is, but he has genuinely changed our lives and I know TH is changing the course of ds's future.

This time last year we were told ds had HFA, and I felt completely sickened with worry throughout the whole of Xmas. There are toys he got last Xmas that make me cold inside when I hear them because I remember how I felt back then.

This year it is so different. I know ds still has a long way to go but he is getting there. Today he had his nursery Xmas show: last year he had an utter meltdown the moment he came in the room, this year he joined in everything, followed instructions beautifully, wore his costume and waved at us cheerily. He was on the front row for singing cos he's knows the words better than most of the teachers and he didn't muck around or wander off - he just paid attention and got on with it.

Phew for waterproof mascara!

Everyone is astonished at the progress he's making. He's only 3 and Robin thinks that by the time he's 5 or 6 we'll have fixed pretty much all of his traits. smile

Obviously it's fab that ds has a proposed statement but I'm now hopefully that in a couple of years he won't need it and none of the kids will ever know he was a bit different.

Hope you are all feeling as optimistic as we are for 2013.

Badvocsanta Thu 13-Dec-12 07:18:25

Princess smile
<wipes speck of dust from eye >
Wonderful

Ruggles Thu 13-Dec-12 07:49:24

It's so lovely to read everyone's good news.

Princess - that is so wonderful, I can just imagine how you felt last Christmas - that stomach churn of worry is horrid and impossible to switch off.. Just brilliant to hear the progress made to this year! Good thing I don't have the mascara on yet smile smile I hadn't realised that ds was only 3 - how old were you when you started? Did you do the chair and anything else? Good luck with the statement, and emails!

Indigo - fantastic news too! I still think neighbour is a difficult word to spell grin grin

Cats - more good news! It's these things which no one in RL would understand the significance of. wink

Ruggles Thu 13-Dec-12 07:55:21

Mebaasmum - welcome! It sounds as if you are well on the way already. Have you noticed any changes? We have no regrets about calling Robin - as others have said, he really is changing my ds life and he makes feel very positive for the future. Good luck smile

mebaasmum Thu 13-Dec-12 12:56:43

Thanks
i think we need to bite the bullet

Badvocsanta Thu 13-Dec-12 13:01:16

Tom came home form school yesterday very pleased.
He got a really hard sum (412 \ 19 anyone?) and got the answer first out of the whole class smile
It's his Xmas party today and he was fine about it. Even took some normal clothes to change into!
smile

Ruggles Thu 13-Dec-12 19:24:16

Tom sounds brilliant. smile smile

I am reeling and feeling very sad. We have help on a Thursday from a very experienced childminder who is excellent with our dc - we had trouble before with horrid nanny who couldn't cope with DS. Anyway, she is not one to be alarmist or say too much but she is very worried about DS and thinks she is withdrawing into herself. She is 2.5 and only speaking a couple of words. She is sociable when it suits her but does have another world aura about her - she reminds me of John Lennon. She's also worried about other flags - obsessive about some toys / things being in the same place / becomming nervous of new things. I have seen this and not seen it IFYKWIM. I know I'm wandering off thread, again, but it feels over whelming and I know you lot! We're about to go to my best friends birthday drinks, who I know will go on about her wonderful four dcs. sad sad.

Badvocsanta Thu 13-Dec-12 19:27:37

Your dc are wonderful too ruggles!
I don't know what to say wrt the CMs comments.
I can see why she is worried sad
I keep having wobbles wet my youngest so I can empathise, but she is still very young.
Is she under the weather at all ATM?
How long have you/the CM been noticing these traits?
Xxx

Ruggles Thu 13-Dec-12 19:34:26

Thank you Badvoc. You're right, I must remember how wonderful they are when others are going on... DD has been ill for a week with cold / teething / fluctuating temperature. We've been worried about speech for ages and seeing a SALT privately (GP won't refer us for another month). The other things have become more pronounced. Obsessions started as attachments in a cute way but have become more fiercely fought and vocal. Has always been slightly aloof but show affections when it suits her. What worries do you have about your youngest?

Beautifulpossum Thu 13-Dec-12 21:37:29

Worrier- so pleased to hear the good news about your DS. Just remember- he has DDS- no more, no less and Robin is able to help all children with DDS. I really don't thinl you will need the statement but agree that it is great to have as a plan B.

Indigo- The progress your DD is making is truly fantastic. At last she is breaking out of her dyslexic prison.

Ruggles- Try not to worry about your DD. She may well have DDS. All our children have DDS. Robin sorts DDS. Why don't you get Robin to have a look at her when you go next? We went to Robin because of my DS, but got Robin to look at DD too. She is doing well at school and I would not have sought help for her. School do not think there is anything wrong. However, Robin was immediately able to spot her ADD and thanks to him she is no longer being called a "Der -brain" and is able to concentrate so much better.

Good news from here is that - finally- DS has completed Base In and Base OUt. Start Autoslide tomorrow. Anticipate squawking and keyboard bashing will return but know we are now on the home straight with this VT.

IndigoBelle Fri 14-Dec-12 06:45:35

Ruggles - <hugs> sorry to hear you're so concerned about your DD.

Unfortunately I would say its quite likely she too has developmental delay syndrome. You know all 3 of mine do.

You know I've been researching different causes of DDS and all of the explanations I have found are things that can effect all children in the family.

Ie the GAPS diet says they both inherited bad gut bacteria from you and so both got leaky gut which causes stuff to get into the blood stream that shouldn't be which causes development problems.

The candida theory is that all of us are riddled with candida (yeast overgrowth) which are causing all these problems.

And the DNA tests my DD has just have done says she is GSTM1 absent which means she (and presumably the whole family) lack some digestive enzymes which cause leaky gut which causes.....

The good news of course is that everything you're doing for your DS will equally help your DD.

I'm so sorry.

I remember how devestated I was when I realised DS2 had problems as well as DS1 and DD. I really thought I wouldn't be able to cope.

But of course I do most of the time and so will you.

She may or may not have development problems. But if she does it will be much easier to help her now you know so much.

She is so young. She has so much development left to do. If you can start things moving in the right direction now ...... she can fully catch up.

I'm sorry. I really am.

Badvocsanta Fri 14-Dec-12 07:20:34

Ruggles...Silly things really I suppose...writing backwards, his temper! He is only just 4 though...I think we have to remind ourselves that a lot of what we are seeing can be simply due to age and is actually age appropriate, but not having been through these developmental stages with Tom I worry about them.
If - and it's a big if - your dd does have DDS then as devastating as that will be for you at least now you know what to do.
Robin can get rid of DDS.
And we are always here for you x

Ruggles Fri 14-Dec-12 07:51:45

Thank you ladies flowers flowers. Sorry this is a bit of a long, rambling post. I've spent half the night thinking about it all and feel much calmer now. I am worried about how I am going to cope - I've worried so much about DS and felt like I'm going to pop at times and I'm sure I've gone all weirdy more weirdy as it's just so distracting. You're right, we are in a much better position than in October when penny dropped that DS had issues - I've read lots and found you lot and Robin!! Also, DS is doing so well.

Anyway, onwards. We just have to make this a whole family project. I think that's a great idea to take dd down to see Robin when we next go. I did talk to him about her speech delay and we've started on diet / supplements / chair exercise. I know that he's the right person to help us all.

Indigo - I am so interested in all of the research you have done. I'm sure I have a leaky gut from when I was a young child and have always struggled with digestion / candida etc. DH and I were talking last night we're thinking about taking DD to see Sincere Health when we go. Also, going to think some more about GF/DF for after Christmas.

Beautiful possum - would you mind telling me where you ordered your leaky gut probiotics from? Thanks for telling me about Robin and your daughter.

Thanks again smile smile

Ruggles Fri 14-Dec-12 07:52:59

Messages crossed, thanks Badvocsanta smile

We had ds' school report today. Really positive. The last report we had from his old school focused on what he couldn't do or needed support to do. This talks in detail about what he's achieved. My favourite bit is from his PE teacher ( he hated PE before) who said 'he showed real strength of character and perserverence when he found things difficult and was able to significantly improve'. Am delighted with that as difficult things in the past would have led to melt down and refusal to try again.
Still a number of comments about lack of concentration but I'll see what Robin has to say about that when we have our Skype appointment on Monday.

IndigoBelle Fri 14-Dec-12 16:56:10

Well done little bag.

DD got 15 / 15 on her spelling test. First time ever.

But the significance is not that she got them all right - the significance is that it didn't take her a long time to learn them. We only went over them 3 times.

Her brain is fixed. It works properly. Her severe dyslexia is all gone.

She did have to go gluten free / dairy free as well as doing TH. But we're there.

We're truly 'there' now.

I no longer feel like a SN parent. I no longer feel like any of my 3 kids have SEN.

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