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Old 30 Sep 16, 07:30 AM  
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bearandbuzz
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Aspergers? Any advice appreciated. #Update post 37#

I'm looking for a little advice and support about ds2.
From birth he has always been tricky, unsettled, only wanting me. He was diagnosed with renal reflux when he was 6 months old and we put a lot of his ways down to that.
As a toddler he experienced the terrible twos from the age of about 18 months to 4, when he was good he was lovely, but he could just have a tantrum over the tiniest little thing. Even now we know he reaches meltdown easily, for instance if I say it's time to stop playing electronic toys, he can moan and stomp and the tears can fall.

Fast forward to now and he is 9. He is much more sensitive to change than my eldest son, he seems to get really unsettled when we come back from holiday or if something out of the norm is going on. He is more tearful too - he gets upset by things that seem (to us) quite insignificant and not worth getting upset about - but to him it's almost the end of the world.

He is a clever lad, but at school he gets in trouble for 'low level disruption' - making humming noises while they are writing, tapping things on the desk, I've been told he bounces his leg up and down under the desk regularly.

He has a group of friends but does tend to get quite possessive of them, for instance a lad he met at pre school he bonded with over the train set and they became friends, they ended up in the same class together and were friends up until about 2 years ago when the other lad grew up and away from the trains, but ds2 couldn't let him go and got quite upset and frustrated that he didn't want to play with him anymore. He also doesn't recognise when someone isn't good for him - for example he seems to keep going back to a lad who just doesn't mix well with him - they continuously get into trouble for doing things they shouldn't when they're together, but despite me continuously saying he should stay away, it's like they have a magnet and are drawn together.

Speaking of the trains, he has always had an intense love of them - at times bordering on the obsessive. Recently we went to Disney world and he was able to recount details of each of the different monorails we saw, which really surprised me, apparantly he'd watched something on you tube shut it before we went out and had remembered it all!

Sleeping is another issue, sometimes it takes him ages to settle, despite sticking to the same routine pretty much since birth. We have an 8 o'clock bedtime, with a limit of 8.30 for sleep - once he has brushed his teeth etc he is allowed to read for a bit and then lights out. He will go through stages of still being awake at 10.30, calling out and saying he can't sleep - it's too noisy,it's too hot,it's too cold, he just keeps thinking...I've tried many things, sitting with him, relaxation techniques, which work for a little while and we think we've cracked it and then it starts again. Once he is asleep he is usually a pretty good sleeper until the morning.

Previously I've just let these things (and many others) pass as him being immature or maybe a phase that he will grow out of, but more recently I've been really looking at they way he is and wondering if perhaps it is aspergers.

Despite the issues he sometimes has at school, they have not mentioned any specific concerns. I've been spoken to a fair few times about behaviour - sometimes he will do something that he has been told off for and they eyed to mention it. It is never malicious, usually just really silly and when I ask him about it it can't really explain why he did it. Mainly it's low level disruption.

I work at the school he is in, so I am in the position where I am aware of a lot of times he is in trouble, or I can hear his name being mentioned in the class. I try to ignore it as best I can as I am very aware that parents don't need to know abut every minor problem that goes on within a classroom, I very much go by the rule that if it's a serious problem they will let me know.

At the end of last term I mentioned it in passing to the senco, who has had dealings with him, she said it could be aspergers too, but was unconcerned.

Over the summer holidays I've been reading up a bit about it and can tick so many boxes I'm pretty much convinced this is what it is. Now I just want to know what I can do to help him. I'm pretty certain it's not severe and he generally functions very well - it's more the social side.

He has now been in year 5 for four weeks andhis new teacher called me in the other day as he has some concerns. He too has noticed behaviours (foot tapping, hand flapping and general day dreaming) which don't match up to his level of understanding - he can chat about certain topics (if they catch his interest) in astonishing detail at times, yet can't get these ideas on paper.

I've agreed for the school to get the ball rolling with assessment, but to be honest im not sure what this involves although I work there, I do not get involved in that side of things. Can anyone shed any Light?

I'm struggling with whether it's worth going through the process of any formal assessment as I just don't know what's that going to achieve? Ultimately I want some kind of understanding for my son, I want people to know he isn't doing these things deliberately, but I also want him to be treated the same as others as he will need to get through life the same as others too. I suppose as well, I feel I've got to be certain because I work at his school so his teachers are my colleagues and I also feel the pressure of not wanting to make a fuss over nothing iyswim.

I'd really like some help from others in the same boat - im a bit at a loss. What does the future hold for him? What can I do to help? Is he going to struggle as a teenager and adult, when I'm not around to help? I'm just confused as to what I should do now - if anything? I'm also a bit sad, I know nothing has changed - he I said still my little boy who I love to bits but I think back to all the times I've been so cross at him for various things and just thought he didn't care. I also look forward and wonder whether these traits I thought he'd grow out ofwill actually get worse.


Sorry for the long post, I just start writing and couldn't stop!
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Old 30 Sep 16, 07:34 AM  
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Hi

I just read your post and I am about to go to work. I will PM you later this evening with my experience my DS is now 15 with Aspergers.

Don't worry :-)
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Old 30 Sep 16, 07:46 AM  
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Thank you. Your post just made me well up, I just need some support x
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Old 30 Sep 16, 12:27 PM  
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It sounds as though it could be Aspergers. DS20 shares many of the same traits, he was statemented in his first year of primary school, the ' low level disruption ' almost drove his teacher around the bend luckily she was lovely and supportive and also the senco , hence the quick statementing .
Definitely go ahead with the assessment. It will only help your DS if people around him are aware of why he behaves as he does and when he gets to secondary school everything will be in place should he need, for example, somewhere quiet to take time out or study or extra time when taking exams. Little things that can make a huge difference.
Things have probably changed in the 15 yrs since DS was assessed, but he was observed in class on several occasions, we had a couple of appointments with an educational psychologist ( I think, too long ago to remember) he was asked some questions and given some puzzles / tasks to do. When we had the formal statement, we ( myself, senco, teacher, ed psych) met and decided what, if any help DS needed. Things like a home / school diary being kept so teacher and I could communicate about behaviour or worries. A quiet space DS could take time out when class got too noisy. Distractions when his tics got too disruptive etc etc. During exams he was given extra time and the option of a scribe as he is such a slow writer.We met annually throughout primary and secondary school to revise the help he needed.
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Old 30 Sep 16, 01:03 PM  
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My DS who will be 22 next month was diagnosed with Aspergers and a lot of what you said in your post reminds me of him. However, his was not severe enough to be statemented as it's a sliding scale and not all Aspergers people are affected the same. My DS is now in his second year at Uni, has made some friends and seems happy. It's a family joke that he cannot tell when girls are flirting with him. He just doesn't seem to notice it is happening no matter how obvious. We found once we had a diagnosis it actually helped both our DS and us. Hope things get better for you.
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Old 30 Sep 16, 01:48 PM  
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My DS is 10 and is having some major problems mainly with Anxiety and panic attacks (which our school is very unhelpfully classing as behavioural problems). My view is that if you have a gut instinct that something is wrong you are probably right. I am having my son checked for Aspergers/ ASD as he shows some non verbal signs and I was told by my GP that the correct route for that is CAHMS, who will also deal with his anxiety.

My son's school has insisted that he has no special needs as he is achieving levels but he has (thanks to a private) test been diagnosed as dyslexic this week which in part explains some anxiety and self esteem problems. The school form stated that they did not believe he was dyslexic and that any issues were due to him being defiant!

All I really want to say is good luck and you are not alone, if you think there is a problem I think it is best to find out as you can help your son if you know what his particular struggles are better if you know than if you do not.
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Old 30 Sep 16, 08:52 PM  
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My daughter has just started the process of getting assessed for asd and add. She's five, I went down the HV route when she was 3. It's a very long process. It's good that school are involved but also go to your doctor. Keep a diary of concerns, quirks, traits.
Please pm me any questions not that I'm an expect. I'm still in shock.
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Old 4 Oct 16, 12:34 PM  
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My DS15 also has Aspergers - this was him to a T when he was that age. We went through the 'process' at age 6 and so very glad we did. I could write a book on the process and everything that has transpired since (all good by the way) so if you have any questions feel free to pm me
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Old 6 Oct 16, 11:38 PM  
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My Ds13 was finally diagnosed with Aspergers last week. I've known something 'wasn't quite right' since he was about 4 and it's taken me this long to get anyone to listen to me. He is borderline which is why we struggled for so long as at school he is the perfect pupil, but at home and socially it's enough to make life difficult for us all.
We ended up going through CAMHS as he became very upset in 2014 when his Grandad passed away and he talked about dying to be with him..this rang alarm bells for me as he suffers with anxiety and depression and I was so so worried he would do something silly. In retrospect it was a good thing for us as we are now getting help and I can begin to learn Andy understand how I can help him.

I have no valuable advice for you other than go with your gut. You know him better than anyone else in the world. And don't worry. It will be ok (I'm telling myself this as much as I am you).
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Old 8 Oct 16, 10:46 AM  
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Hi our dd is nearly 8 and is being assessed for asd(aspergers). Many similarities to what you have said and she is very bright but hindered by demand avoidance and social issues in school. I think diagnosis will help her to understand herself and deal with things growing up, especially in her teens when things can be difficult anyway socially etc. Also for us it will help enable support as she is also getting an education plan (replaced statements) which will help protect support as she goes through school. I think it does help others to be more understanding as well.
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