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Should I tell my child about her label?

(36 Posts)
thegovernor Fri 01-Jun-12 21:29:16

My DD is 9.5 yrs old and has recently be diagnosed with non verbal learning disorder which is very similar to Aspergers.

Her social relationships are causing her greatest distress at the moment. She doesn't have any friends, she feels different from her peers and knows that none of them are interested in her. She is extremely bright and is acutely aware that she is doing something wrong socially but is unaware of what she needs to do to improve her situation. Her basic social skills are absolutely fine but she just can't master the nuances of social communication and these are incredibly difficult to teach anyway.

One of the reasons I sought a label in the first place was because I believed that if she understood her difficulties and discovered there was a reason for them then she wouldn't give herself such a hard time and she'd hopefully stop thinking of herself as unlikeable. However, now she has a label I'm not sure it would be helpful to share it with her yet and I suspect it could make it worse. I just don't know what to do...

moosemama Mon 04-Jun-12 16:18:03

I think a lot of the negativity is them painting a worst case scenario type picture.

For us, ds1 went from a top grade pupil, top of his class in everything in the infants, to no progress at all through years 3 and 4. The slide was horrendous for him to cope with and his anxiety was through the roof. We so nearly pulled him out and home schooled BUT, with the right support in place and some truly amazing teachers he has flown this year and has now caught up to be just below top in his year again. He is honestly a completely different child from the boy he was in years 3 and 4. He is happy, confident and enjoying school and whilst I am obviously very worried about transition to secondary I am now able to see that, as long as we make sure he is properly supported, there is absolutely no reason why he can't go on to be happy and successful and find his own way in this world.

The fact that you are on here, expressing your concerns and talking with other parents of children who have AS or NLD, means that your dcs will also be well supported and have absolutely the best chance to be happy and successful. smile

Pooka Mon 04-Jun-12 17:48:11

Thegovernor - from memory (don't have the report to hand) in terms of centiles, the verbal reasoning scores were in 97th centile. The non verbal (forgotten the actual term used) were in average range, think about 49th centile. Processing speed was 14th centile. Working memory was 98th centile.

The ed psych said that the difference between the verbal and performance (think that was the term for non verbal) was clinically disparate, even though the non verbal was in average range. The processing speed was a shocker, because he's exceptionally good at what he's good at, but with hindsight would explain the fact that he is a totally different child in terms of his mood during school holidays to the child in the last 2 weeks of term, or at the end of the week even, when he's absolutely knackered.

Thankfully he is also one of the oldest in the year (September birthday) and I think that almost masks the immaturity in terms of social skills, but not quite. And I think the gap is narrowing a bit which would also explain the increasing problems we had this year pre-assessment.

The plan is to manage carefully the year 1 to 2 transition, get the borough's social communication guy in to observe him, continue with the differentiation he has for literacy (goes to year 4 for guided reading) and see where we are then.

It IS a comfort, you're right. And I'm so glad we initiated the investigation because I feel I'm more tolerant of his quirks and more aware of what I can do to try and teach him skills that come naturally to others. Or at least to try and help him make sense of differences. At the same time I'm gutted - was especially upset when I realised that the ed psych and the teachers had seen what I hoped wasn't there.

moosemama Mon 04-Jun-12 18:15:10

Pooka, those are similar results to ds1's WISC IV results, with the exception of the non-verbal skills which iirc were much lower. Can't check at the moment, as the report is on my laptop, which is currently dead. He was definitely 98th centile for verbal and 14th for processing speed though. I think ds's working memory was lower than your ds's as well though, as he came out as high average, so it can't have been as high as the 98th centile.

Ds was assessed as having a reading age of 13 when he was in year 2, which was as high as they could test with their resources at his infants. The SENCO said she felt he would have tested higher if they'd had the right kit. This has dropped back a bit now though, as, although is language skills are very good, he is not so good with inference and understanding character perspective etc, which becomes more and more necessary the higher they go in school. He is still considered advanced for his age, but plenty of his peer group are of a similar standard now, whereas before he was way out in front, iyswim. Mind you, his scores are also held back by an avid refusal to read out loud to anyone. hmm

The processing speed result came as a huge shock to us as well, but has been useful to know, as now he is allowed extra time for timed assessments and tests and his teachers know to allow him thinking/processing time before he gets stuck into work. One of the ways the processing speed issue became obvious in time was that he started being unable to complete timed maths tests once the actual mathematics became more complex, whereas before he had almost always finished and got them all right. He started to complete fewer questions, still getting them all right, but not finishing the whole test. As this is attributed to his processing speed, his results are now aggregated from the work he completes, rather than as a percentage of the whole test or he is given extra time to complete the whole test before his work is marked. This has really helped his confidence, as he started to tell everyone he was stupid when his grades dropped, despite still getting practically every question he answered correct. sad

Pooka Mon 04-Jun-12 19:00:03

Moosemama - that sounds so similar to ds1! His reading age was assessed at 11 years in reception. Taught himself to read (or rather, absorbed what we were doing with dd, who is a couple of years older). He also refuses point blank to read aloud to us, though will do at school as part of the guided reading group and occasionally 1-2-1.

He also had loads of work in his books that was started and correct but he obviously hadn't had time to complete. Mostly maths, he's pretty fast at literacy work.

With hindsight, the teachers were telling me at the year 1 parents' evenings that they felt there was an issue, but without being explicit enough for us to pick up. Apparently the borough had bad experience wrt teachers suggesting some sen without having assessment back up, and that's why they can be reticent.

School was also shocked by processing speed, but now they know and can take to account. The ed psych report had clear bullet point recommendations which have been taken on board, at least for now. Remains to be seen how is applied - poor senco is under extreme pressure with far too much work to do and not enough resources. And ds1 wouldn't have had an assessment via school - his behaviour is generally good and he's not disruptive (at the moment).

I'm so pleased (if you see what I mean) to offload a bit here and to know others in same boat albeit a couple of years ahead. I Try to be really upbeat and nonchalant IRL and since so many of friends at school have dcs in same class as ds1 I really don't want to talk about it with them - seems disloyal to ds in screwed up way.

moosemama Mon 04-Jun-12 19:15:34

It's great that the school are proactive Pooka. Ours was the opposite, we were telling them we thought there was a problem and they were refusing to recognise it.

My ds was the same, well behaved, achieving well and not disruptive - hence why they wouldn't accept our concerns. Unfortunately he went into freefall when he hit year 3 and went into the juniors. At that point we brought in help ourselves by calling the Ed Psych crisis team. Ever since then his anxiety levels have been huge and it's this that causes the problems at school. He's not disruptive in the way most people would think of a disruptive pupil, but he takes up a lot of the teachers time and energy handling his worries and dealing with him when he's upset about something.

I know what you mean about it helping to chat online about it. I have never discussed ds in the playground either. There are only two other mums who know he has AS. It can feel pretty isolating sometimes.

If you want to, you could head over to Mumsnet Special Needs Children, as there are lots of people on there in similar positions to yourself, as well as others who have been through it and are further along. Lots of great advice and support and we are a really friendly bunch. smile Like you said, it helps sometimes just to know that you are not alone and to talk to others who understand where you are coming from. I joined MNSN well before ds was diagnosed and the support and advice I have had and still get on a daily basis over there has made a huge difference to my/our life.

Pooka Mon 04-Jun-12 20:25:42

Good for you for calling ed psych crisis team in - but so sad that you were on our own in the early school years. sad

I admit to lurking on SN Children threads. blush

I'm sure will head over in future, just getting used to things for now before I launch in. Is ridiculous - feels like an admission of a problem to talk about it, like I'm criticising ds. Daft and cowardly really.

I'm certain that there will be bumps along the way wrt relationship with school. Proof of pudding will be in the tasting and I'm dreading the year change while looking forward in hope of better class teacher support (senco is good news, but very overworked). His current teacher (well one of them) appears to take the view that he needs to be cut down to size, just doesn't seem to like him, and seems to tread subtly on any sign of self-confidence. When what he craves is praise and encouragement. sad

So sorry thegovernor. Feel like have hijacked your thread. Hope the books you've ordered are a huge help. smile

moosemama Mon 04-Jun-12 21:32:25

I completely understand what you mean and why you feel the need to lurk rather than post. I think most of us were the same at first.

I also understand why you feel it's admitting the problem and even betraying your ds a little to talk about it all openly. It's all part of the process and whilst we all handle things differently, many of us have been there.

All I can say is that eventually you start to realise that it's actually the polar opposite. Acceptance is one of the hardest parts for many of us, it comes with with time and little kindness and compassion towards yourself. Eventually you will come to the point where talking about your ds feels like a positive thing to do and is actually a way of helping you to help and support him. We all get there in our own time. Whenever you are ready there will be a warm welcome for you over on MNSN. smile If in the meantime you ever feel you are in need of some support, but aren't yet ready to brave MNSN, please feel free to pm me and I'll do my best to help.

By the way, ds1 had a teacher like your ds's last year - she was a nightmare and stole a lot of his self-confidence from him, BUT, take heart, this year's teacher is amazing. She is honestly the best teacher I could have asked for for him and then some. He has positively blossomed working with her and the effects were obvious within a few weeks of him being in her class. It's such a shame that so much of our childrens' confidence and success rests on the attitudes and behaviour of individual teachers, but sadly it's the way of the world. I honestly believe if all teachers were like my ds's current teacher there wouldn't be any need for an awful lot children with AS/NLD to be on the SEN register, let alone have a statement.

My apologies for the hijack too thegovernor.

thegovernor Tue 05-Jun-12 16:14:34

Pooka you're not hijacking the thread at all. It's fascinating to hear your concerns because i can relate so much. This is also the first time i've really talked about dd and how i feel. Now she has a label i don't want other mums at school to know. I have talked / cried about it with a couple of close mum friends but they dont really understand and i feel embarrassed that im talking about me and my problems too much.

I know this is a couple of posts ago now but my dd scores were reversed. 92% vri, 48% wmi, 98% processing speed and 50% for the other one ( cant remember what that is). She is not disruptive at all and i think went under the radar because academically all was well. The school never referred her to camhs but i went the gp route when at a year 2 parents evening the teacher mentioned in passing that it was difficult to assess my daughter because she kept on curling up in a ball in the classroom when the teacher approached. It never occured to the stupid NQT that this was fairly important information that i might want to know about. By that time dd was also complaining of being bullied and excluded and was dreadfully unhappy and always making excuses not to go to school. I suspected she may be AS and got referred to cahms for an ADOS assessment. She didn't meet the criteria But a year later we were with cahms again this time food and eating issues (restrictive and selective eater) and we got referred to the complex disorders unit where they decided that she was NLD.

The school is trying to be supportive. Her current class teacher told me earlier in the year that she suspected dd may be AS and the teacher seems to have a really good understanding of dds needs and difficulties. The school has referred her to OT for motor skills and last year they set up a social skills group for her with other peers in her class but although they are willing to help and even go on courses to gain expertise, if necessary, they dont actually know what to do to help day to day as they have no experience of NLD. I am going in very soon to discuss the ed pysch assessment that they are about to do and to give guidelines on what i want the assessment to cover. I have a list of NLD teaching strategies to suggest that they should implement and a list of strategies they should employ during unstructured times to help. I have the feeling that I have to be very involved in directing this process to make it work for dd.

thegovernor Thu 07-Jun-12 21:34:43

So my books finally arrived and DD grabbed 'the blue bottle mystery' and finished it in 20 mins. She absolutely loved the book and asked if we had the sequel. Fortunatly, I had purchased the sequel during my AS book buying frenzy from the weekend. She polished that off in another 20 minutes and started rummaging through the amazon box for another book. The only other suitable book I had was, 'can I tell you about Aspergers Syndrome' but I had planned to read this with her once I had rehearsed how I was going to approach the subject. She grabbed it and took it to read in the loo and we agreed to meet in her bedroom in 5 mins. As she walked into the bedroom she said to me, "I think I have AS" and she showed me page after page in the book the things that she related to.

We talked and overall I feel it went well -better than I had expected. She brought it up again today so she had obviously been thinking abou it. I don't feel its necessary to say anymore at his time unless she brings it up but I'm so pleased that I've laid the foundations for further discussions and made her aware that there is a reason why she doesn't always get it.

Thank you to everyone for your advice and for shaing your experiences.

saffronwblue Thu 07-Jun-12 23:13:39

Oh thegovernor that sounds most encouraging. I am waiting until I am at the point where I have really absorbed it before I can talk to DD about it. Last night she came home in tears after school sport where a girl mocked her for not getting goals at netball and the uberbitch sports teacher was also unpleasant. She cried and cried about " why do I always get picked on?" It was the first time I thought it might help her to know about and understand her diagnosis. Will talk further to DH this weekend about when/how we tell her.
God, it is hard, isn't it?

mindfulmum Fri 08-Jun-12 18:03:30

Message withdrawn at poster's request.

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