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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

Lookslikerain - I hope you are feeling OK today about the diagnosis. It must be a confusing time. Be kind to yourself and please do keep me up to date with what your DS is up to. It would be great to see if he and my DD are making the same progress.

Badvoc - Sorry to hear about your son. Croup is awful. I once had an ambulance out for DS when he had croup. Felt quite bad as it cleared as soon as they arrived blush

Badvoc Wed 20-Mar-13 08:51:39

Yeah...we had am ambulance too!
Lookslikerain...wrt the dx. It doesn't change who you boy is and how you feel about him so your attitude to it is absolutely the right one IMO.
Smile and nod is a great way to make people think you agree with them when secretly you are quietly disagreeing with everything they say!!
smile

Lookslikerain Wed 20-Mar-13 09:46:19

I think it'd be fair to say we feel quite disillusioned by the whole thing. They were very keen to diagnose him but now we're on the other side of that, there's basically no support. An EP will contact us to look at nursery (he'll hopefully get a place in August) and we'll see the paed again before that. He doesn't have any challenging behaviours, so we don't need help with strategies to manage him etc, though I don't even know if they offer that. Maybe I'm just a crazy mum who won't accept her son's diagnosis (and I really don't mind if you think that grin), but I think for me personally, I need to feel there's something I can do. I hate all the "waiting and seeing". Yes, my name is lookslikerain, and I'm a control freak! grin

They said his improving language skills will really benefit him at nursery/school and in teaching him some of the non-verbal type stuff he doesn't do. Okay, so that would be the language skills that are good and improving only because we paid for private SALT as your SALT discharged him, telling us there was nothing to worry about and it would all come on its own. Well, thank goodness we didn't listen to you then! They actually said that if we were starting the speech therapy now, it probably wouldn't have the same effect as it did starting 9 months ago. And while I'm ranting, it was us that started the whole process because, despite raising our concerns with different "professionals", we kept being told "he's young", "it's still early for him to do xxx", blah blah blah. Our dealings with them over the last year doesn't exactly fill me with confidence. It feels like such a blooming charade and farce, all to make sure that any help we need at school will be provided.

I watched him yesterday, doing what I'd describe as a pretty basic but good attempt at some pretend type play. He was using some of his little stock of learned phrases, but there were used in context and he's got to start somewhere. He had 2 little happyland people playing in the house then going to the shops next door. He's never done that before. If I do nothing, I feel like I'm writing him off. At least doing TH gives me something to focus on and makes me feel like I'm doing something to help. Okay, I know there's a chance it won't work, but it can't do any harm, and as I've read so many times on this thread, what else can I do? At least he'll be healthier by the end of it. He's eating better, less fussy, fewer tantrums. If that's all we get out of this, I'll take it. smile

Totally agree with you!
There doesn't seem to be anything actually done to help our kids.

My DD's speech is improving as, like you, we go to a private SALT every week.

Nursery (attached to school she will go to in september) are trying, but they don't have the skills needed to help her. SALT and OT go in and give them some hints, but they are not trained OT's or SALTS. School feel she needs a statement, OT and SALT think she needs a statement, the Ed Psych said not yet.

My DD has no challenging behaviours, but I worry about what her future holds. As you say at least with TH we are doing something. And it may work, it may not, but even if it makes one aspect of her life that is hard a little bit better then it will have been worth it as far as I am concerned.

Love the playing with Happy land people. That sounds fabulous.

Badvoc Wed 20-Mar-13 10:58:50

That's the worst thing...even with a dx they do nothing.
sad

But that's also the best thing about doing TH, finally you feel like you can DO something instead of waiting and/or managing. I got so sick of the word 'strategy'. I don't want strategies for managing my son, I want him to be like everyone else's son! And I know lots of people on mumsnet SN don't like that attitude, perhaps I should accept my ds for who he is and the problems he had, but that attitude is why my ds is virtually there already. He really is nearly the same as everyone else's sons.

Badvoc Wed 20-Mar-13 15:09:48

Yes.
I want my son to be himself.
But himself on his terms and not dictated by some random syndrome or sen/sn.
You're right though, it's not a popular opinion on MNsN!!
It's like the whole idea that dyslexics should have more time/access to voice recognition software/laptops etc...
That's all fine til they leave school and enter the world of work...can you see any employer buying in software, laptops and giving more time to do projects/reports?
No, me either.
My job as a mother is to prepare my child for the big wide world as best ican
And the big wide world isn't that great sometimes.
What should happen doesn't. People with sen/sn are discriminated against so to me it makes sense to try and limit effect the sen/sn has on them if you can.
Robins theory wrt DDS makes so much sense for us...it was like all the jigsaw pieces fit together suddenly.
He's never going to win a noble peace prize.
But that's fine.
He now has choices wrt his future which would have been denied him if we hadnt done TH.
X

Badvoc Wed 20-Mar-13 15:12:45

The irony that I have now a that the school think I am uber neurotic mummy as Tom has of course caught up and is where he should be academic wise....as I said to dh, if we hasn't done the rrt, ait and TH Tom would still be on level 1s sad
You know what his IEP states as his "area of concern"?
"Speech aNd language difficulties"
Ffs.

I expect school congratulate themselves on what a great job they've done with Tom smile

Ok so one if the things that robin asked was wether DD had empathy. That was a resounding no from me and DH.

Her brother was crying today and she kept telling me and DH "x upset mum" "x upset dad". I wouldn't say she was upset by it grin but she noticed and felt we ought to be doing something about it.

It was nice to see. smile

Badvoc Wed 20-Mar-13 19:16:18

smile yeah.
I will let them have the glory smile

Lookslikerain Wed 20-Mar-13 19:51:18

I meant to add another post after my post earlier, saying sorry for the rant. But then the phone rang and I got distracted. Anyway, thanks for listening. It was very therapeutic! smile

But, shopping, I completely agree with you. I hate the words "managing" and "strategy" too. I don't want I manage my son. I'm his mummy, not his line manager. I want him to be like everyone else too. If he needed physio to help him walk, we'd do it without a second thought. I don't see TH as anything different, except its for his brain not his legs. But yes, badvoc, as you say, I wouldn't say these things on the main SN boards. Just within the safe confines of our lovely thread smile. I think we're safe in here, doing our "alternative" thing!

Prince that's great that your DD is starting to show some empathy! Really great! If you don't mind me asking (just tell me to sod off if you don't want to), does your DD have a dx?

No she doesn't. well yes she does. She has a speech and language disorder. She also has major problems planning movements. She has little to no concentration.

Essentially she has a developmental disorder and as her Mother I cannot see how she will learn anything next year in school. I cannot see that she would be able to sit, listen, understand and then actually do something that is asked of her.

The worry we have at the moment is not knowing if she has a learning disability or not. She has not had any cognitive testing so we don't know what we are dealing with at the moment.

She does not fit in to any diagnostic boxes essentially. Maybe things will get clearer as she gets older. Although of course I am hoping not! smile

I havent told anyone about TH. Not school, not the speech and language therapist, not friends, only my mum. I just cannot be bothered to try and explain. And also because if people notice differences then I want to know they are genuine.

Ruggles Wed 20-Mar-13 20:05:08

Hope you are ok lookslikerain It's a lot to take in, but it sounds like you have a really positive and pragmatic attitude towards it all. How long did the process take? I hope it hasn't been too draining.

Like several of you I can not bear this idea of 'watch and wait'. To me its like crossing your fingers and hoping that either something won't manifest or that it will go away. I think we all sound quite similar in that respect and that is possibly what drew us to TH - the idea that we can take some action for our DCs. I think you expressed it very well shoppingbags* I have been amazed with our results so far, not only with what they have achieved but also the effort they have put in to it (they are learning to work at things and that a small daily effort adds up) and also the diet (what a great start in life to have a really good diet vs the okayish diet they used to have). I am still having up and down days but there are far more up than down and there is nothing like following a programme for helping one stay positive. Sorry to ramble on... smile

Prince that is a great development. We had a similar change in ds and I felt as if it was the first tiny step into a new world.

Badvoc You poor thing. What a horrid experience with the ambulance - I really hope that the sick bug moves on soon. You must be shattered. Its funny what you say about school thinking you are neurotic - I find dealing with other folks reactions the hardest part - they either think I'm in total denial and hint about facing up to things etc or that I'm a fruit look neurotic mother who will f**k up her dcs by worrying about them so much. I am convinced that my ds thinks its all in my head. When I told her that ds had ADHD she thought about it for a few moments before commenting that 'oh well, lots of boys have that'.. 'there's nothing wrong with him apart from your expectations' blah blah grin grin

Ruggles Wed 20-Mar-13 20:07:07

Sorry, just read back and meant my sister.

Lookslikerain Wed 20-Mar-13 20:25:22

Prince I haven't told many people, other than family about TH either. But as soon as I do, I then feel I need to explain how it works so they don't think I'm just being taken advantage of! I'm viewing it that the things my DS struggles with are our opportunities rather than his problems.

My win for today was sneaking some tomato puree under the cheese on DS's cheese on toast like a cheaty pizza. I thought it might get spat out but he ate it all up. I'm building up to an actual tomato! I like to think about how far we've come with food. This was the boy who lived on only shreddies and fish fingers before Xmas!

Lookslikerain Wed 20-Mar-13 20:29:19

Ruggles it's funny, but we actually feel ok post-diagnosis. I think we felt worse when he failed the mchat last year. We'd been told it would take ages before he was assessed but I think it only took about 7 months in total, and 6 of those were waiting for the appointments!

Badvoc Thu 21-Mar-13 06:28:56

Well.
Dh has now been up ill all night...sigh.
I feel like this is never going to end sad
I have woken up with swollen glands and sore throat again.
We are all too ill to go to mils tonight (it's her b day) and no doubt that will somehow turn out to be my fault.
Wrt telling people about TH...my family know we are doing "something" but not one of them has ever asked about it or how he is doing sad
So I don't mention it.
Pils are more interested, but they get confused smile
Anyway, better go and check on dh.....it's going to be a loooong day....

Badvoc can I ask what schools reaction has been? Are they amazed by your DS's progress? Or do they just think he has simply caught up? Sorry if it's a nosey question. I just wondered what they thought.

Sorry you are unwell. Spring will come soon and things will surely improve?

Badvoc Thu 21-Mar-13 07:09:42

They are very pleased with his progress, (how coud they not be??)but as far as they are concerned its all down to them smile
They do know we do "stuff" at home like apples and pears and he used to have to have time off for the rrt appts but they never ask so I don't tell them.
They know nothing about TH.
If they were interested and wanted other children to benefit the way tom has, then of course I would tell them, but they just don't care.
This is a rather jaundiced view (and I have family and friends who are teachers) but at the end of the day a teacher is still paid whether they have been a good teacher or not, whether the children in their class have progressed or not.
Toms dreadful year 3 teacher still got her wage month after month even though Tom was making no progress at all.
So it follows that why should they care about 1 or 2 failing children in their class?
sad

I am hopeful that school do care that she is not keeping up, but I don't think they really know how to help her IYSWIM?

Thanks for answering. Maybe when our kids are having kids and this kind of stuff is more mainstream we can tell people we did it for them.

Badvoc Thu 21-Mar-13 12:09:11

smile
I hope so.
My own experience is that school always think they know best, even when a child is demonstrably not progressing.
But I realise some schools are better than others.
Part of my epiphany prior to starting TH was that I can send Tom to school for the socialisation, the per groups and the fun.
But as for interventions to help him, I was on my own.
It's worked out ok for us smile

UniMama Fri 22-Mar-13 12:49:18

Hi everyone,
Sorry I disappeared I have been extremely busy. First of all thanks to everyone who replied to my post on here. 'Ruggles' I would really like to chat further about dr Goyal so I will pm you when I get a chance.

So I have some good news, we are booked in for our first appointment with robin next weekend Easter Day. I am really looking forward to it and am feeling quite positive about it. However, there is also bad news, we had my sons parents evening and they said he has completely stopped learning. Meaning that he is refusing to take part in any of the learning when it involves writing things down.

In the past they have always pushed him or punished him for not doing it, for example missing playtime. But he started to get very distressed and was running away from school or just running out of class and hiding somewhere. They have now decided to just let him be self directed as he has one on one. But this has resulted in him doing nothing other than the fun stuff.

It has got to the point where there is no point in him going to school. He is not doing the work and if they do pressure him in to it he becomes so distressed he ends up running away or having an explosion and getting himself in a right state. The children at school are beginning to think he is a bit mad as he can get very worked up and run around the class or school making loud noises or throwing things.

If I was not in the last few months of my degree I would remove him from school to be honest. It is like he transforms into someone completely different when he goes there. He does have his difficulties at home too but he is also himself at home and a sweet loving little boy.

Could someone keep me updated about the meet up? I would love to come along with my 2 if that's ok. Depending on the date though as my husband has taken time off work over Easter so he can look after our children whilst I write my dissertation. So if its a day he is not off I will be at home with them looking for things to do.

If anyone has any suggestions on the learning refusal issue we are having please share. I might start a thread about it too. We just don't know what to do with him. He is such a smart boy, he is in year 1, reading at year 2 level maths above average too. They have said writing although above average when he started year 1 then became just average and now they said they can not assess as he is producing nothing. They said they are well aware of how clever he is and some teachers in the passed have even referred to him as 'gifted'. They have said he has exceptional general knowledge (he loves his facts about the world and animals) But they said he is in no way reaching his potential.

We really don't know what the way forward is and at the moment I am just hoping that tinsley house is going to be a turning point for us.

Unimama, so good to hear from you. I nearly sent a pm and then worried as I didn't want to nag you. Really glad to hear you're seeing Robin next week, I think you'll feel a lot better once you get started on the programme. As we were saying only a couple of days ago, it feels great to have something practical to do.
Re learning refusal I wish I had some more tips. When ds was refusing to learn we taught him at home in the evenings and at weekends and moved school. We spent the summer doing TH and catching up on maths and writing. What's your son into? Ds is lego mad so I make anything to do with learning connected with lego. At the moment he's mad on making animated lego movies so we get him to write the script ( sounds fancy, is very basic 'ah! Take that Joker!') and then he can start to make the movie. Maths has been trickier but we used mathletics and because he loves the computer he was happy to 'play' on that.

Badvoc Fri 22-Mar-13 13:29:04

Unimama.
Hello again.
Good luck with your appt with robin smile
I didn't have school refusal per se with my ds but took him out of school at Xmas in year 2 as he was so very unhappy/being bullied and wasn't making any progress.
It worked out really well for us, but obv it's not a solution for everyone.
He went back into (a different) school in nov of year 3.
Then in the January we started TH.
We are hopeful that ds will be finished TH by sept when he starts middle school.
It sounds like your sons problems are stopping him from accessing the curriculum and tbh the schools attitude of "just let him do what he wants" is for their benefit not your sons sad
I have no advice other than seeing robin is a fantastic first step!
Xxx

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