Having a problem with labels

[embles76]

Hello! I am new here, I hope that you can help, give me some advice. I have just today had a very difficult discussion with my son's school teacher who is referring him to the SENCO (I think?) and a child psychologist. He is in reception and she thinks he is struggling to adapt socially in school. I have suspected this for a while, but, honestly, to have these fears confirmed is like being hit with a sledgehammer. From what she has said I think they are thinking asperger's (she didn't say that, of course, but I am pretty sure he is not autistic and aspergers seems to fit). What are endearing little quirks and eccentricities at home are quite major social issues at school in a class of 30 pupils, as I am learning. I hope that we can help him at home and at school by working together. He is very bright, but does have some problems integrating socially and understanding social boundaries. He is fine one on one but seems to shut down in big groups and under stress, he will fixate on certain things, objects etc. It is not an extreme case I don't think. At home he is much more relaxed and dare I say it 'normal' (if I could only understand what normal is for a 5 yr old boy!). He has some issues understanding and dealing with emotions in himself and others, and he gets very frustrated at times especially when things don't go according to his plan. I think partly the problem is he gets very over-stimulated at school. He has always been like this even as a baby he couldn't cope with too much stimulation he just goes into overdrive and then cannot concentrate on anything! Anyway, I am really worried about him being labelled as special needs. Is it a blessing or a curse? Obviously I appreciate he may need more help than most to adjust to school life, but I don't want him to be stuck with a SEN label for the rest of his daysl. Will it help him to be told he has a condition, or will it make him feel more excluded, more 'other'.... it's early days, and he still needs a diagnosis, but I'm pretty sure this is where things are headed. Can anyone give any advice, words of reassurance? I just want him to be happy and I'm devastated to think of him feeling lonely and isolated or worst of all unhappy. I broke down in tears on the teacher... I have started a new job this week too so it's not great timing and am feeling major guilt about all this and tbh a bit of a failure for not picking up on it sooner. Sorry for th long post!

"but I don't want him to be stuck with a SEN label for the rest of his daysl."

Well for starters educational labels only apply while he's in education and needs support, so if it turns out that he does settle in and there comes a point where he doesn't need support there's no need for the SEN label anymore anyway. If it doesn't need to be a lifelong label, it won't be.

"Will it help him to be told he has a condition, or will it make him feel more excluded, more 'other'"

My son has Asperger's, he's bright and he could tell (at an older age than your son) that he was struggling to do things that other children did easily and without even thinking about. His Asperger's made him feel excluded and what has helped with that is the diagnosis, the knowledge that he is not 'useless' (his word, not mine) but different and that there are other people who do feel similar to him - that he may not be like other children in his class, but that he's just wired a bit different and that he's 'normal' for him.

"I just want him to be happy and I'm devastated to think of him feeling lonely and isolated or worst of all unhappy."

My son's happy, he'll be 15 in a couple of months, he's doing pretty well at school (bar a few minor issues) He's never going to be Mr popularity, but he's got friends...I worry about him, but he doesn't, it affects me much more than him, which I figure is good, it's just me being a worrywart then isn't it, lol.

5's a fairly common age to spot Asperger's ,it's subtler than other things and it often isn't noticeable until they're in school, my son was 7. I was chatting once to a parent support worker once about feeling bad about it being so late before I picked up on it, she laughed and said that she'd worked most of her adult life with people with ASDs, had a daughter who was autistic and didn't notice that her son had Asperger's till the school suggested it...so don't beat yourself up over that at all.

and crying at the teacher, dear god if I had a pound for every time I'd done that, I'd be loaded by now, lol, of course you were upset, it's an upsetting thing.

I second everything tabulahrasa has said, starting with the crying.. If I had a £ for every time I have cried over dealing with my son's needs I'd probably not need to work

Labels are NOT necessarily negative things. Without a label it can be very difficult to get the support necessary to support a child through school.

My DS2 has autism..more Aspergers end of the scale (he was dx autism as he didn't speak til he was 4 but he is very verbal now!), and moderate learning difficulties. He wasn't diagnosed with autism until he was 9 despite being in a special school from aged 4!
The formal diagnosis, tho painful, was the best thing for him as it has enabled those working with him to 'get' him ; to understand his anxieties and his rigid thinking.

When he was little, it didn't matter to HIM that he had a label, but now he knows he is different , and that it has a name and that it is OK to be different. He is actually quite proud, for want of a better word, of being autistic.. we have been very careful to flag up the positive things about his abilities..his incredible obsessions make him amazing to talk to; he is nearly 14 and unlike many teens is unbothered by peer pressure because he lives in HIS world.
After being in an SLD school for nearly 10 years he is, with support, integrating into a mainstream school unit and may even be put up for GCSE maths.. amazing for a little boy who didn't communicate, and pretty much sat in a corner and lined up pencils! His label has meant he has support to achieve to the best of his abilities:)
He has friends ...granted they all have SN but he is a happy young man most of the time, and the support he has had has been vital to this.

I think what I'm trying to say, is don't panic. Labelling him doesn't condemn him to a grim future by any means:)

( oh and Aspergers IS autism btw... the differential diagnosis is usually dependent on early speech, or speech delay!)

Hang in there, and if he needs extra support and a label helps, go with the flow!!

I would second the above, a label is just that, doesn't change the person at all, but it does open doors to stuff they need...

I would also agree with other posters that more helpful to see labels as signposts to the help that is needed but also as your ds gets older and more self-aware he may find a label reassuring as a way of explaining that there are reasons why he acts or feels the way he does. Also in terms of getting him help at school - if it turns out he will need help- it is actually a benefit to have the issues recognised early on.

Having said all that, I think we've all had the "grieving" reaction when we first suspected things weren't going to be smooth sailing for our dcs. It's normal to want to reject it at first and to feel guilty but you just need some time to get used to it.

Agree with what has already been said.

I felt awful that I didn't pick up on ds's ASD until he was in year 4 and started having some major issues socially and behaviourally.
Having said that I always knew and would describe him as quirky.

Our label has helped ds understand that there ISN'T something wrong with him, because peers told him all sorts of nasty things about who he was. It helped him understand why he finds somethings difficult and some things very easy and it has basically been a signpost for help when we have needed it.

Ds is far happier with his label than he was without it.

The diagnositic process for ASDs is basically a nightmare.
You'll be waiting for this referal, that appointment, this report, that professional etc etc etc and that is without any waiting list times.

What that means to you is time to research, help him with areas he struggles, get school really involved etc while all of this is going on.
And you know he may not even get a diagnosis.

i totally agree with all the above and esp what thMedusaIsHavingABadHairDay says my son sounds very simular, being stuck with a label , i think this is what the schools drum into us as such a bad thing, but what is bad is being pushed out pushed to the back of class put in corridoors told you cant join in excluded even from playtime , bullied by peers and teachers talking about your child(ive over heard this) as if they are worthless allowing them to get so far behind their peers they are jeered at by them for what is actually the schools fault not their's if as you call it your DC is given for want of a better term a label horrid phrase btw i prefer being upfront a physical difficulty or LD or both as they often go hand in hand, better they are taken notice of and helped than treated as if were still living in the dark ages, be proud no matter what difficulties yr DC has because he or she will strive and florish given the help they deserve , i must add weve all felt exactly the same as you and were upset/shocked even when we knew already in our heart of hearts but hearing it and later seeing it (for me it was my DS getting DLA) i found extremely upsetting as it was like a confirmation yr childs disabled in some way but i dont think of him like that at all hes just (X) so take heart it will get better your DC will be ok but you will probably have to fight for everything good luck and be strong

Hi girls -

Thank you so much for your responses, you have no idea how much they mean to me. I was very low yesterday, but had a long chat to my husband last night (who basically said he wasn't surprised at all!). I'm not sure why it hit me so hard as it wasn't as if these are things I didn't know already, I guess it't just hard to have your fears confirmed by someone else.

Today I feel so much better, and almost relieved if that makes sense. I feel like now we can actually start getting to the bottom of things and start trying to help him in a positive way, rather than always stressing and worrying about his odd behaviour. I really like the idea of a signpost and will try to think of it like that. Just today I went to talk to his swimming teacher and was able to say that he was undergoing this assessment at school, and that he was struggling with concentration and social interaction and almost certainly this is why he appears to be making slow progress in swimming, having difficulty following simple instructions. Whilst before i thought he was just being difficult and acting up now I am so glad that they will understand that there is a reason for this and he is not just being naughty.

I have no idea what he actually has, but have started doing a little research to understand the autism spectrum a little better. It's a bit of a minefield and there seem to be so many different types of disorders which are very closely linked. If anyone can point me in the direction of any good books or websites please let me know.

My son is very advanced verbally (he spoke from a very young age) and has a very wide vocabluary for his age. He is on track with reading and writing (although he finds the latter more challenging) at school but the social side is a worry. Having said that he does have friends and he plays really nicely one on one or in small groups with other kids and with his little sister. He is kind natured, good at sharing, generous, if a little exuberant sometimes. We always used to describe him as being like a puppy dog which totally fits; super enthusiastic about everything but somewhat lacking in the ability to restrain himself! He struggles a bit to interpret emotions in himself and others which we are trying to help him with. He finds some physical things, like getting him dressed quite difficult and almost traumatic, others he is ok with. He is not particularly routine obsessed but he does have little obsessions and fixations with certain objects, books etc. He has a tendency to interrupt at inappropriate moments and he can get quite frustrated if he has an idea about how things should be and this is challenged or if he really wants to do something and he can't. He is not that inflexible though, but I can see how this might be something that worsens under stress. He does have a tendency to 'switch off' and go into himself while he is playing or engrossed in something, or if he doesn't want to do something. I wonder if this is a coping mechancism.... He loves numbers and sciences (he says he wants to be a scientist when he grows up!). He has the most amazing imagination and is very good with words, making up rhymes etc. I suppose they are things that up until now we have been able to manage and work around at home, make excuses for (he is only little etc.)but now he is getting older they are becoming more obviously 'odd'. Also up until 7 months ago we lived abroad in Italy. I wonder if we had been here it would have been picked up on sooner....

I hope you don't mind me off-loading on here and posting every now and again. It's so nice to have somewhere to go! I think I will go to our gp to see about getting a diagnosis and I'll let you know how the assessment with the school goes.

Nobody minds an off load :) it's good for you!

Just from my own experience I'd say have a good old nose through the NAS website, and I'd get a Tony Attwood book, see if your library happens to have 'the complete guide to aspergers' by Tony Attwood.

If you read that and think bingo, then I'd buy a copy from amazon :)

I'm sure others will be about to add to the reading list :)

you might also want to investigate the sensory processing disorder 'label' and see if you think any of it fits as it can be similar in some respects. This book a good start www.amazon.co.uk/-Sync-Child-Carol-Stock-Kranowitz/dp/0399531653/ref=sr_1_1?s=books&ie=UTF8&qid=1299345133&sr=1-1 good luck.