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What pushed you to get a diagnosis of your child's special needs?

16 replies

chocolatebiscuits · 27/09/2012 16:48

And did it help?

I'm asking because of concern for my DP's DS. He is 13, and just isn't the same as other children. Seems to be to have many of the signs of Aspergers or possibly Dyspraxia (though I'm judging by other kids I know of, I'm not an expert.

For example - very nerdy, talks only about topics he's interested in (computers) and switches off at all others, doesn't notice when he's boring people, very, very unco-ordinated (can't kick a ball), hypersensitive about texures (won't go barefoot, hates sand, hates certain foods), walks with a funny gait and holds one arm oddly, doesn't seem to have any friends, etc.

If he were my child, I'd be talking to the school, or maybe the GP to see if they could identify why. I know from what DP says that his DS's mum has concerns about him (he lives with her in the week, and with us at weekends) but when she expresses these concerns to DP, he perceives that she's "having a go at DS" and brushes them aside. DP is very close to his DS, and I think sees a lot of himself in him (though I disagree that DP ever had such degree of oddities about him). Is there anything I could do to encourage him to seek some help for him? What would make you seek help? And would it make a difference if he did have some diagnosis?

For information, he's at a private school, bright academically. The school claim he is well-liked, but this really doesn't fit with what I see of him interacting with others (no party invites or meet ups with friends in the past year, other kids noticing he's odd and commenting on it, his sister mocking that he has no friends, etc). The cynical part of me thinks the school would say that, wouldn't they, as they want your money. But DP takes it on face value and say if the school says he has friends, then he must be fine. Because his DS is bright, he doesn't see any problem with his lack of physical skills.

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Ineedalife · 27/09/2012 16:58

For me the main motivation was Dd3's anxiety. She gets very distressed about some things to the point where she actually vomits.

She can also be very rigid in her ways and as she got bigger it got very difficult to motivate her to do things she didnt want to do. When she was little I could just scoop her up and put her in the car etc but now I cant budge her.

Since the diagnosis we all try to understand where she is coming from, we give her warnings about changes to routines and handle her very differently to how we would if she was NT.

Have you ever asked him if he is happy at school and with the friend situation. I knew Dd3 was unhappy

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chocolatebiscuits · 27/09/2012 17:21

I've tried to ask about friends at school. He tends to be dismissive of the question - saying that he goes to school to learn, not to make friends :(

But he isn't manifestly unhappy, no. Content enough to be as he is, or at least resigned to it. He's not asking for help.

I think we do a bit of the stuff you'd do if they had a diagnosis anyway - we always seem to be making allownces for him compared with the other kids, we know he finds changes really hard, so try not to spring surprises on him, and allow him to opt out of quite a lot of social interactions that he'd find hard.

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Ineedalife · 27/09/2012 18:01

Dd3 has never actually asked for help but I can tell from her behaviour when she is distressed.

Shortly before she got her diagnosis I was worried that she was becoming depressed as she was coming home from school and not wanting to move from my side, we literally sat together on the settee and she just didnt move.

From being a very lively toddler to hardly moving was very worrying.

TBF on the friends front, he may actually not be that bothered, if he is comfy in his own skin and doesnt get unduly distressed about stuff I think you would be hard pressed to convince him to get assessed anyway.

You could try saying to him that you are available to support him and help him if he wants help and see what happens.

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chocolatebiscuits · 28/09/2012 12:16

Thanks - I think he's not really that bothered about the friends thing.

Just seems to me that making friends is a life skill that everyone needs - or at least getting along with people and not having them think you're an irritating know it all. And being really clumsy doesn't make life easy either.

He won't come looking to me for support. He's still a bit unsure about me. It's DP he would come to - DP is fond of him as he is, but seems a bit blinkered about his issues. I don't like to say too much that he seems odd to me, especially as I know he gets defensive when his ex says this to him.

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Tiggles · 28/09/2012 13:28

For me it was also the anxiety DS1 had that impacted massively on his life. He hid under the desks at school and was too scared to come out, he would make himself sick/throw himself downstairs to avoid school, he would throw a tantrum going into school, and then tantrum for an hour to get him out again. If he had a supply teacher he would lie on the sofa moaning when he came home and refuse to eat (for up to a week, if the supply teacher was there a week).
He couldn't live like that and I had to know the reason behind it.
Now he is older, knows he has AS, and he still worries about things (lots) but it is easier to work through things (because I am more patient probably).

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troutpout · 29/09/2012 19:02

For me...
I started to feel that ds knew he was different and I could see signs that he was beginning to turn that knowledge in on himself. It was about his self esteem .
The diagnosis allowed him to put it in a box
'I do these things because I have aspergers' ... Not 'I do these things because I am a bad person'

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TICKLETUMBLE · 02/10/2012 17:25

Chocolatebiscuits - I have a similar issue, well kind of, my stepson who lives with us has many traits that could be attributed to high functionaing autism and/or ADHD. He is on action + at school to help with social situations, concentration and attention etc.
His dad is happy to accept he is a slow developer and is very touchy about formally investigating if there is a medical diagnosis that explains there behaviours and problems.
As he is getting help at school , DP feels this is fine, but I feel that maybe there are strategies and different approaches WE would take if you knew a child was ASD or ADHD rather than just a bit immature, but as step mum I cant get the ball rolling on anything (biological mum not on the scene by the way).

Maybe he is just a slow developer, I dont know, but if there is 'something', he could indeed say (and so could we) 'I do this because I have ADHD ' or whatever and stop being confused and upset when he gets it wrong with friends, or forgets the rules (again).

DP just doesn't want to go there just yet, so we wait and see what happens.
I suppose, as long as he is happy, does anything need to change?

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WhoKnowsWhereTheTimeGoes · 02/10/2012 17:43

For me it was that DS obviously needed extra help at school and school wanted to help but we felt that a diagnosis would help us understand his needs better and tailor his support properly, we were just throwing random strategies at him to a large extent pre-diagnosis. This was in Yr 2, so he was only just starting to realise he was a bit different. He has AS but is one of those children where even people who know him really well often would not realise he had SNs.

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sazale · 02/10/2012 18:13

With my dd it was after years of difficult behaviour and I felt that there was no linger a bond between us. I'd suspected something from her being 18 months old but thought it was terrible 2's (she was my first). Then when school said no probs at school I thought it was all for my benefit (very dominant of my time). I knew nothing of ASD, I'm sorry to say.

At the end of primary I just knew she wouldn't cope (I was right) and I went to chat to the GP without her. She said defo reasons for concern and referred her to CAMHS. She was diagnosed at the age of 13 with ASD, dyslexia, sensory processing difficulties, auditory processing difficulties, significant motor skill impairment and may be diagnosed with ADHD later this year. She's just started a special school although she is academically very able. She has lots of what she calls friends but I'd call acquaintances and to anyone that doesn't know her very sociable.

The diagnosis has benefited dd immensely. It's opened up social groups for teens with ASD amongst other things and it's helping her to understand why she finds things difficult and that it's not just her. It's also saved our relationship as I am now fully read in anything to do with any of her difficulties and as a family we now get her. It's still difficult but we know why things happen now.

My DS 5 is under assessment as he has a speech disorder and I suspected hypermobility so that made 2 developmental disorders and is an automatic referral to the child development centre for under 5's. During the multi disciplinary assessment they picked up traits and social anxiety that could indicate high functioning ASD so are doing more assessments later this month. His behaviour is the complete opposite to dd's but he's over compliant. Time will tell.

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ArthurPewty · 02/10/2012 18:15

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ouryve · 02/10/2012 19:16

My boys were both young. DS1 was high maintenance pretty much from the moment he was born. As he approached nursery age I realised that he was very echolalic in his speech, rather than communicative, that there was such thing as Sensory Processing Disorder and I could have written the book based on my experiences with him, alarm bells were going off because I had autism in my family and on his first day at nursery, he just ricocheted and wouldn't talk to anybody.

DS2 was very delayed with everything. Within months of DS1 gettign his ASD diagnosis, I requested an evaluation for him.

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Chocolatebiscuits · 04/10/2012 10:33

Thanks all

tickle - that's kind of how I feel - that DP doesn't want to think that there might be anything "wrong" as such. He sees any suggestions that there are as people having a go at his DS, which is frustrating as my motives are to try and make life easier for him, not to blame him for the way he is.

Guess I'm trying to figure out whether it is worth pushing him, or that factors might trigger him into looking for help - most people seem to be saying they looked for a diagnosis because they're DCs were clearly not coping at school. DP's DS has just started a new school this year, so will see how he gets on.

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justaboutiswarm · 04/10/2012 10:40

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jigglybottom · 04/10/2012 11:02

After having it pointed out to me!!

More so because of the change in him last year (this was not my Ds 7) and because I want to help him.

Also reading too much on tinternet....Going out of my mind! is it my fault?, was it because I went to work?, I mollie coddled him?, Is his change of behavior at school because he isn't happy at home?, SPD?, Visual learner?, I am overprotective?, not protective enough?, That drink I had that weekend 2 weeks before I found out I was pregnant?, His eyesight which I had concerns about when he was 12 months but nobody listened so eventually I thought I was just being paranoid (4 yrs later the orthoptist he was referred to following a school eyetest was LUCKY to spot he had a squint and caught it before his eye completly shut off!!!!)?, I didn't spend enough time with him?, I only raise my voice if I'm extremly cross?, The fever he had when he was 2?........just need someone who is trained to tell me yes or no, I can't help him if I don't know what to do.

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Delalakis · 04/10/2012 11:28

My son with SEN is my youngest, so when he was much slower to pick up reading and spelling than the other two I began worrying. I also had a friend with slightly older children who were both very dyslexic so I suppose that made me more conscious of the possibility. When he was in Reception the class teacher was quite helpful and tried various strategies which didn't work, but I remember being annoyed by some of the helpers who made jolly comments about how he had read the book to them from memory, and I pointed out that it might be an idea to give him a book that he hadn't seen before.

He had a good teacher in Year 1 who took this quite seriously, and by the end of the year she agreed that it might be an idea to have him assessed but said there was really no chance of getting the LA to organise it. I therefore arranged a private assessment when dyslexia was confirmed. It was still a bit of a struggle when he was in Year 2 because I don't think that teacher really believed that the assessment was accurate as he was doing quite well in other respects. However, by the time he got to year 5 he was really struggling and it was evident that he was getting further behind, so we began the long struggle to statementing which eventually only happened in secondary school.

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Rochellemaria · 04/10/2012 11:39

Chocolatebiscuits,my ds is 12 and was only diagnosed with Aspergers 2 years ago.School actually pointed it out to usShock.Once I looked it up of course he ticked all the boxes for Aspergers and Dyspraxia.Your description of your partners ds is identical to mine.The comment about 'I go to school to learn' is exactly what ds would say.The lack of friends thing doesnt really bother ds either(bothers me more).
I would say that it is crucial your dp tries to get support for his ds.My ds is fine accademically at school but since we went and got him diagnosed he is now getting resource help at school every day which works on things like social skills with him which is helping him enormously.They are also helping him with things like understanding common phrases,sayings,idioms etc which he doesnt get at all.
The one thing I wanted to say to you was it seems to be very common for the dads,husbands,men in general to stick their heads in the sand and say 'o nothings wrong,he will be fine etc'. I was on a thread a few weeks ago discussing this(I have searched but cant find it for you) and the amount of us that were describing your partners reaction was incredible. I know when the school suggested to us that we go and get a private diagnosis for ds(given the waiting lists and his age-quite old really), my dh felt there was really no need and he would be fine,wait and see ,just quirky etc.It was I pushed and insisted and am so glad now really.It is helping ds enormously.I was then able to go and get all the books,read up on it etc and really help and understand ds a lot more.
It is still me who does all the reading/researching/liasing with the school etc and dh just treats him normally really.But 2 years down the line I can see dh opening up about it a bit more.
I think its a man thing really.
I would push your dp a bit if I were you.I can see you are in a difficult position though.I would also consider speaking to the school and asking them to monitor him and see what they think.I know that my ds will struggle enormously with the change to secondary school next year so I would guess that your dp's son is struggling at the moment if he has just started in a new school.
Sorry,went on longer than planned but hats off to you for worrying and wanting to help this boy.
You are doing the right thing.Dont let it lie!Smile

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