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Possible aspergers, help needed with managing others (especially family)

(10 Posts)
mathsgeek Mon 11-Jul-11 14:01:22

First post in this section, in need of experiences, hand holding, cups of tea and TLC.

My DS is now going through the Ed Psych process with regards to various aspects- social behaviour, need to do things in a certain way etc. It's early days and certainly we have no diagnosis but the school have talked about possible aspergers. Certainly after the shock of being informed about their concerns, we do feel there is more to investigate and are glad that the school have recognised their concerns early on, and are doing something about it with regards to his IEP for Reception.

My problem is with my in laws, who like us have had the 'shock' but are dealing with it in a difficult way. Firstly, they are disbelieving that DS's behaviour is anything other than what might be expected for his age and have urged us to question the school/ed psych much more, I get the feeling they would prefered us to have declined the process and to see how things pan out. I also get the feeling that they and other friends see it as a 'parenting problem', that we need to parent better. DH got a phonecall last night that said MIL is sending a book- 'bringing up boys' for us. I'm also trying to deal with DH who didn't see it coming (I had a suspicion with what the school was saying) so has found it very hard and is 'blaming' himself.

And in it all I'm just trying to keep the cogs going, I feel sad and uncertain about what's to come but at the same time I also feel relieved. DS has been quite hard work from about 15 months onwards and in some ways I feel liberated that someone has recognised that some of his behaviour isn't always down to my parenting. As an ex teacher I am relieved that he will receive recognition for whatever there is and that his education will be managed better. He is my boy and I just want to do right by him.

I do understand that it is a shock, and people need to work through that. But what we want is understanding and concern for DS and also a concern for our needs in working our way through. I think they do not see the DS we see. Certainly as the person who has spent most time bringing up DS a lot of things are making sense now and the behaviours/aspects that we have internalised as being normal for DS, alongside our strageties for managing them do indicate that further investigation would benefit him.

Arrrgh, sorry for such a ramble, getting it down does help. Is what I'm feeling normal and what is the way forward?

Chundle Mon 11-Jul-11 14:12:26

Arrghh grandparents can be a nightmare sometimes! No advice on Aspergers as such but my dd has ADHD and going through the diagnosis process my parents said 'oh she's just smart, lively, excitable ' etc etc they sent me a bloody parenting book too! So I sent them a shed load of info printed off the net with various sections highlighted that pointed out dds behaviours! Since the diagnosis they have been totally supportive smile
I think grandparents think they are trying to help and don't see what they are doing as annoying!
It's good he's getting help he needs now perhaps try and get as much info as you can for your OH to read up on x

AttilaTheMeerkat Mon 11-Jul-11 14:23:35

Hi

Who got the EP in?.

School and or ED Pysch however, cannot make a diagnosis of AS (they should not be assuming AS either as they are not qualified to do so). That task has to be done by someone like a developmental paediatrician; has you seen any such person to date?. GP should refer you to such a person if not.

With regards to school as well an IEP is not always worth the paper its written on; you may well ultimately need to go for something more concrete legally like a Statement. Has anyone also ever mentioned applying for a Statement; this could well help your son with regards to any additional support needs in school both academic and social/communication.

Your ILs have the apparant luxury of denial; you do not. Denial actually helps no-one here least of all your son. You're not in denial and you're truly helping your son as best as you can. Tell your DH not to blame himself for his mother sending you a book; its not his fault. Stuff feeling guilty and guilt itself; guilt is a useless emotion. You cannot and should not beat yourselves up here (been there, done that, waste of time. Keep concentrating your efforts instead on your boy and not supposedly well meaning but actually unsupportive idiots like your ILs).

You and your DH are your child's best - and only - advocates here, never forget this. Get support for your own selves and find others who are supportive and who truly understand: the NAS can be helpful to you in this regard and keep posting on these pages!!.

I tell you something else; you've had concern from the time he was 15 months old; this is absolutely nothing to do with parenting. AS or anywhere on the ASD spectrum is not caused by "poor parenting".

EllenJaneisnotmyname Mon 11-Jul-11 14:53:35

We tried to avoid the 'blame game' as far as genetics was concerned, because it definitely wasn't parenting. I had the luxury of a fairly neurotypical (NT) DS1 before DS2 came along and I knew I wasn't doing anything differently. Mind you, DS1 is what you'd call a maths geek! Grandparents and friends are generally trying to be sympathetic, they think it's better if it's 'just' a parenting problem. I heard countless friends telling me that all children did that, whatever difficult, odd or upsetting behaviour DS2 was exhibiting. Yes, but not all of them, all the time!

The important thing is what you can do for your DS now. Make sure he gets a proper medical DX. An EP cannot DX as Attila said. It will eventually open doors to support. There will be support groups you can access anyway, and read, read, read. Tony Attwood is often recommended. Make sure support is implemented at school. It sounds as if the school is being pretty proactive, that's great. It's a good idea to get familiar with the SEN processes, here's a link to the SEN code of practice , still in effect despite the coalition's Green Paper on SEN. Just in case things don't happen as you'd like with the school.

Good luck, be kind to yourselves, it's never easy being told that your DC might have SN or SEN, no matter how much of a relief it is. We'll hold your hand and offer lots of brew .

justaboutWILLfinishherthesis Mon 11-Jul-11 15:03:06

Message withdrawn at poster's request.

zzzzz Mon 11-Jul-11 16:26:59

My first gut reaction was like Attila, to say they shouldn't be sugguesting a diagnosis. I wish I could look shock, but sadly it is all too familiar on this board for teachers and others to be bandying about AS pre-diagnosis. It is a bit like saying you have felt a lump it MUST be cancer. Lots of different conditions and personalities present as possible AS particularly in young children. That isn't to say there aren't issues but AS [of which Aspergers is a sub type], is a complex collections of issues. Not everyone who has social problems is AS and not everyone who is rigid is either. It is perfectly possible to have 2 of the 3 deficits and still be struggling. High IQ and language disorders, deafness, poor parenting [I am not sugguesting this is the cause], all can present in a very similar way which is why diagnosis of ASD takes so much time and so very many proffessionals input.

Grandparents and friends comments with regards to what your son is like are either going to support your thoughts of the moment or not. Try hard not to take offence [though the parenting book is a shock]. A very kind and well meaning Aunt of mine gave me a book on how to think positively and cure brain damage shock. It was hard to receive as my son has primarily a language impairment and thinking positively is not going to help frankly. But she was trying to help so I tried to receive it in the way it was meant. I don't think that saying in our day he would have been a maths geek or whatever is that bad, as it is true. I don't know if the old way wasn't better sometimes than dragging the poor little people from one assessment to another and then getting no help at all.

Your son has an enormous advantage in having a teacher for a Mum. You may have to adapt your parenting and in fact extreme versions of so called "boy" parenting are probably more appropriate than many. Perhaps it would be a good idea to start the Grandparents off with a little hands on babysitting and see what they say afterwards.

Why is dh "blaming" himself? Aspergers is a different way of being and can no more be created than blue eyes or hairy chests. In my opinion there have always been bright different individuals in the world and the rest of us have benefited massively from their presence. Your son may need your help getting through school, simply because school is not aimed at children like him but at the more average child. That is the schools downfall not his.

LeninGrad Mon 11-Jul-11 17:05:06

Message withdrawn at poster's request.

SuburbanDream Mon 11-Jul-11 18:02:06

We had all this too - "he's just spirited", "you were like that at his age", "you're not strict enough" etc etc, from grandparents who see him once every few months at most and just won't accept it. Then of course, the other family members who urged us not to go for a diagnosis because it would "ruin his future career chances" hmm.

It's a difficult one .. my only suggestion really is to go on the NAS website and order some of their leaflets, they have loads on explaining diagnosis etc to family and friends and lots of them are free.

mathsgeek Mon 11-Jul-11 19:20:52

Thank you for your messages, I have appreciated them. I do get that they are trying to help, have had a quick browse on the NAS website but leaflets sound good. Strangely you should mention PDA because after a browse I felt that was more of a DS fit, but I'm aware I'm self diagnosising here and what we need to do first is work through the process.

The school got the EP in, and I probably didn't explain it well enough here, but they were clear on the fact that they couldn't say it was aspergers, it needs to go through the processes and it might not be that at the end. When they first talked about their concerns I did pick up on the possible Autism links with what they were saying, but my knowledge so far is limited and from the viewpoint of a teacher. I do think that they have a fairly good reputation for SEN, and what the Ed Psych has suggested as IEP points for Reception will help DS regardless. The teacher that has highlighted her concerns has personal experience with Aspergers and is an excellent nursery teacher, I know that doesn't validate her opinion but it has helped me to appreciate the value of her concerns.

DH picked up on the genetic links more, I wonder if some of it was due to a heightened sense of genetics. There has been something else- a rare physical condition on his side of the family which has come to the fore with his niece in the last 2 years. I have posted on MN for years but fancied a name change a few months ago- however it is true that I am a bit of a maths geek so I think we both have personalities that fit in well with the Austic spectrum!

I do see that in time, if there is anything, the in laws will come round, I went through that denial/acceptance process when there was first talk of the ed pysch. I suppose it would be easier for just a few people to say, you know what... you're doing the right thing by investigating it further. I shall use some of your points raised in your posts as my new self mantra, I am DS's advocate and I'm going to do the best I can for him. If ever they get to the point where they might want to listen to how we're feeling about it, then I do think there have some some great ways of approaching it raised in this thread, we are his parents and we do see and have to deal with more of his ways than they do.

AttilaTheMeerkat Mon 11-Jul-11 20:42:40

Hi mathsgeek

I can only retierate that the EP cannot diagnose anything; such people are employed by the LEA in question and make educational recommendations. Often they are used by schools in conjunction with making a statement application. They would not have got an EP to visit lightly; their visits to school to see a child in any one school year can be very few and far between.

Re this comment:-
"I do think that they have a fairly good reputation for SEN, and what the Ed Psych has suggested as IEP points for Reception will help DS regardless"

Fairly good - hmm. You need to keep on top of them as well.
Not necessarily so re the IEP; it can be worthless because the targets set may not be SMART and its certainly not legally binding (that is also where it falls down). The IEP at the very least needs to be drawn up with you present and certainly not presented to you as a fait accompli.

What else are school going to do to help your DS?.

Stuff the ILs; hopefully they will come around in the end but they are really not your problem. Your main focus needs to be on your son's school; you need to go all out to ensure that his needs are met there. If they don't it will all fall apart very quickly thus causing him - and you more distress. I would look at the statementing process now and if you cannot bring yourself to make such an application yet, just bear it in mind. You may well need to get your DS a statement ultimately particularly as he progresses through the school system.

www.ipsea.org.uk is a good website re the whole statementing process.

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