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Warning, very long post: Don't know what to do or where to go with ds1

(44 Posts)
moosemama Mon 19-Oct-09 18:34:14

I'm sorry, this is going to be really, really long, please don't feel you have to read it, but I have to get it all off my chest as its all just spinning round in my head and I have to let it out. sad

Ds1 (7) has always been an 'unusual' little boy and when he was a toddler I guess we worked around his problems without realising it, especially with him being our first born as we had nothing to gauge what 'normal' was against.

Looking back and being slightly more informed now I can sort of see there was an 'issue' from the start. He was IUGR for the whole of the last trimester, but just managed to gain enough weight for me to be allowed to go full term with him. He was quite small, but not tiny 6 lb 6 oz and still is small for his age, being a good two years in clothes size behind his age and the smallest boy in his year.

Its only since I had dd, 9 months ago that I have started to realise how unusual he was as a baby, he never cried, not even for a feed or a nappy change. He liked to be cuddled but didn't cry to be picked up and was happy to spend time playing on his own for long periods of time but would interact if you initiated play with him. He met and even exceeded his developmental milestones, was sitting at 4 months and walking at 10 months, but never went through the normal separation anxiety thing and despite us living a fairly isolated life he would go to anyone and was always happy for me to walk away and leave him. I just thought I was blessed with an easy baby and that he didn't cry when I left because he was securely attached.

Watching my dd now, I realise that ds1 never babbled like she does, she is constantly attempting to communicate and copy sounds and searches your face for recognition and interaction. Ds1 actually developed speech early, but had a lot of his own words for things, which tended to coincide with obsessions for example he was absolutely obsessed with washing machines which he called washni and vacuum cleaners, which he called vacni, and he used to call the telephone dordor and the stereo dordordor. (He did this even after he could properly articulate and actually did know the correct names for things.) He also developed an obsessional passion for the Argos catalogue and would spend hours poring over pictures of washing machines, vacuum cleaners and telephones.

It took him longer than average to start actually mixing with the children in his class. He played 'alongside' rather than 'with' for the whole of nursery and reception and only started making friends in year 1. Fortunately, he eventually made friends with a nice small group of children that tolerate his quirks and put up with his lack of social ability and they are still close friends now. Unfortunately however, he hasn't been so lucky with some of the other children and has been on the receiving end of some truly awful bullying incidents, probably sparked by his apparent rudeness because of his poor social/communication skills.

Twice last year his teacher suggested we have a meeting with the SENCO because he was being rude and arguing with teachers when told to do or not to do things and he seemed unable to remember to do things like hand in his homework on time. He was kept in the additional group for social/communication type exercises for the whole year (although we only found out about this recently) and it made absolutely no difference to him. When we went back to try and arrange the meeting both times she said "oh no need, he's fine now"! hmm

Now at age 7 he genuinely doesn't seem to understand that the way he speaks to people is rude. He finds it really hard to understand how his behaviour impacts on other people and often says unkind/rude things without meaning to be unkind or rude. He has a keen sense of justice/injustice but doesn't seem to recognise that these apply to his behaviour as well as everyone elses. (In fact that was almost a direct quote from his year 1 report.)

He constantly interrupts other people when they are talking, usually to say something about his computer or one of his games which makes no sense to anyone that hasn't played the game. He also makes statements of fact rather than asking questions about things he doesn't know anything about, yet is sure he is right about so he will say for example "Mummy, that thing is like that because blah, blah isn't it?" rather than "Mummy why is that thing like that? iyswim and if you say no its not like that because blah blah its because of this he gets really angry and will argue black's white about it. He also constantly tells his brother he is wrong about things whether or not he actually knows if he is right himself.

He often talks to people about his achievements in such a way as to imply he is 100% sure he is THE best at everything he does, but as a result comes across as arrogant, when I, as his Mum know that he isn't really like that at all.

He has to be constantly reminded about every little thing, to the point that I am quietly going insane from repeating myself and have over the past few weeks found it increasingly difficult to keep my temper with him. Its like you speak to him, but he just doesn't hear you. So you say something to him, wait a minute and ask him to repeat it, which sometimes he can do but obviously still hasn't taken in what you said and other times he is at a loss to know what you said in the first place. Sometimes you can actually see him zone out, other times he does a good facsimile of listening.

He does struggle with eye contact as well, he finds in nigh on impossible to look you in the eye when you are speaking to him and if you get down to his level and try to make contact he is actively trying everything in his power to look anywhere and everywhere other than at you. If you say 'ds look at me' he says 'I am looking at you' but he isn't. He seems to find eye contact physically uncomfortable and you can see his body tensing up.

He has some sensory issues. He hates wearing jeans as he can only tolerate 'soft waistbands', he can't stand the texture of certain foods, he hates holding hands unless it can be done a certain way which he is comfortable and he is highly oversensitive to smells and often smells things strongly long before other people or when other can barely notice them at all.

He is a lovely, bright, funny boy who got level 3s in his SATs for everything except listening and communication, yet we are really struggling to get him to remember simple things like bringing homework home and handing it back in at the moment, thread here despite putting all sorts of strategies in place to try and help him and quite frankly I don't know where to turn for help and am at getting to the end of my tether trying to cope with this alone.

So there you have it, a thesis on my beautiful, yet unusual little boy. Heartfelt thanks to anyone that made it this far. blush

Anyone got any thoughts? Where do we go from here?

DLI Mon 19-Oct-09 18:47:18

hi, have you spoken to your GP about your concerns? give examples where possible to back up your concerns.They may refer you to a peadiatrician who can take it from there. I would also speak to the school about them making a referral to the occupational therapy team or clinical psychologist. I am not sure which they can do but i know they can now refer you to one of them.

My ds (6) has di george syndrom (not suggesting for one minute this is what is the "matter" with your ds) and i find myself repeating things over and over again several times without it sinking in! so i know exactly how you feel, i always find it helpful if I do get my ds to look at me when i say something and asking him to repeat it back and ask him if he knows what it means. he sometimes goes in his own little world when he is concentrating and doesnt hear me speaking to him until i have called his name for several times. as for playing along side other children rather than with them my ds was the same and this is simply because he is an only child (so was your ds up until recently) so he wasnt able to develop his social skills as much as some other children.

my ds also has sensory seeking issues, he sometimes taps his feet on the floor and its purely for the feeling, also he he is very touchy feely, won't eat meat because he doesnt like to chew it, has ocd slightly along with many other things going on.

don't feel you are alone and take each day as it comes, pretending that you didnt spend all day yesterday repeating the same things as you are doing today. its now part of our life and i dont even realise i am doing the things other parents dont do such as repeating myself, purposely getting his attention, or helping him with every day things.

MojoLost Mon 19-Oct-09 18:52:31

Hi, from reading your post it really does seem likely that he has some sort of sensory problem. In your place I would definitely contact someone to refer you to a specialist and get some professional opinion.
I think maybe the GP to start with?

moosemama Mon 19-Oct-09 19:00:24

Thanks for reading my mammoth post DLI.

Ds was only an only child for 2 years (his brother is 5, his sister is 9 months). I am only really noticing the difference more with dd because I had PND with ds2 and the memory of his first 12 months is all a bit of a blur.

I just remembered another sensory thing he does, he chews the shoulders on his tops because he likes the way it feels and constantly twists and stretches the hems of his tshirts in a repetititve way.

I guess I was sort of hoping if somehow we could get to the root of the problem, we could perhaps get some assistance in developing stategies to help him that would become second nature to us and his school could also adopt where appropriate.

DLI Mon 19-Oct-09 19:03:53

my ds sucks an old towel (well he has two and a face cloth) when he is bed at night and if you let him he will do it during the day whilst he is playing. i think this is a sensory thing as well.

definitely speak to your GP and the school to see what they can do in the way of referrals

good luck and i hope you get to the help you need.

moosemama Mon 19-Oct-09 19:07:56

Thank you MojoLost.

I actually booked an appointment to talk to the GP about him for the first time ever last week, partly because I felt like I was slipping into PND and finding it harder to cope with it all. Unfortunately we both went down with flu and had to cancel the appointment.

Dh has concerns about getting him formally diagnosed, as he feels that if he has to put it down on job applications etc in the future it will hold him back and he is a very bright able child who could go far, particular in the field of his beloved computers.

His concerns have arisen from the fact that he manages a team of computer developers himself and one recently told him he is ASD but hasn't told anyone else, as when he first mentioned it on joining the company he was teased an ostracised. (Some people just never get out of the playground pack mentality do they?) I understand what dh is saying, but I can't see how he is going to cope with the rest of junior school let alone senior school without either some sort of learning agreement or at the very least something to alert teachers to his issues.

Is he right, do you have to declare diagnosis like ASD or similar on job applications?

catkinq Mon 19-Oct-09 19:11:20

I'd go to your GP - he sounds exactly like my dd and we are having her assessed for Aspergers. ds1 is also different - I also did not think that there was any problem until I had my third - went running to the various professionals with him saying that he was clearly "backward" as he'd got to three and still couldn't line his toys up properly and appeared to think that his trains could talk turned out that this was normal, as was what I took to be an "inane grin" - having never had a child who smiled at anyone I'd assumed that they didn't until later!
Incidently re organisation - I do find this a huge issue. dd now has a special box in class to put everything in - this has helped a bit but she still cannot seem to get herself, her coat, her book bag and her lunch box out of class and into the playground after school. Often she can't evern get herself there - she doesn't seem to realise that teh fact that everyone else has left means that she needs to as well. She also constantly interupts, says some amazingly rude things without meaning to but we just try to keep a sense of humour.

catkinq Mon 19-Oct-09 19:14:56

I've never come across an application which said anything other than "do you consider yourself to have a disability".

I have considered this with dd but I suspect that Aspergers and HFA will become more widely understood in the future and that many employers will be falling over themselves to employ people who will get on with the job without all the gossip, are very knowledgeable about the area, are completely honest and actually want to work all weekend

moosemama Mon 19-Oct-09 19:23:42

Thanks catkinq. I suspect you may be right about people understanding better in the future.

I just find it all so overwhelming trying to decide what would be the right thing to do for him. On the one hand, he does muddle through, is doing well academically at school and has a nice group of friends. On the other ,he has the potential for life to get much harder for him as he gets older and he is starting to get more and more upset about getting into trouble for things when he doesn't actually understand what he's done wrong.

My ds2 is a totally typically 5 year old boy and fortunately very accommodating to his quirky older brother, although he has started to get exasperated with him more quickly recently, I suppose as a result of mixing with lots of other 'typical' boys at school and realising that his brother behaves in a very different way to them.

catkinq Mon 19-Oct-09 19:38:13

dd (nine now) is very bright and very good. it really matters to her to be good. We decided to go down the dx route when she got hauled out of class for "cheeking" a teacher when she'd just been "helpfully pointing out the teachers mistake" . the socail issues also got v bad with her as she had no friends at all. Now we at least have the school agreeign to inform all staff that dd does not mean to be rude and also they have set up a group of "frinds" for her so she is much happier. You could let him muddle through but chances are he will have an easier ride if he is understood and also if he understands what (if anything) is different about him. Having an ASD can be very isolating - knowing that you have an ASD makes it far less so as you then do fit in to the 1 in 153 - ie you suddenly realise that you do belong - just not to the group that you thought that you belonged to

moosemama Mon 19-Oct-09 20:06:02

That sounds so much like ds1. That's exactly what he kept getting into trouble for. He was pointing out the teachers' mistakes and arguing with them when he thought they being were unfair towards him (which in actual fact he was right about on several occasions).

I actually did discuss with him once whether or not he felt different and he said he did, but that it didn't bother him. He has a fantastic best friend who has the added advantage of being the tallest boy in the year so helps to deter the bullies.

Personally, I think he would benefit from and maybe even be empowered by understanding why he finds some things difficult. However I need to somehow convince dh of that.

Goblinchild Mon 19-Oct-09 20:26:51

My son is 14, but if you added a volcanic temper and instant meltdowns to your list, you would have my son at 7.
I went to CAMHS through a GPs recommendation, saw various EPs and such and was handed a dx of Asperger's Syndrome when he was 8.
I then used that as a bludgeon to access support and force encourage change at his primary school. His secondary school have been very good at listening and adapting, he's now Y10.

likeacuppa Mon 19-Oct-09 20:33:50

Moosemama, your description of your ds as a baby sounds exactly like my memories of my ds1, now dx as AS, and there's lots more in what you say that rings bells, for example my ds1 is extremely dogmatic and won't be corrected. (Very wearing!) One thing that really struck me was what you say about your ds's 'arrogrance' which I also recognise. In Tony Attwood's Complete Guide to AS he says that arrogance and depression are the two main ways boys (in particular) react to the social effects of having AS unless they are helped to cope. Whenever I think about this it makes me feel very sad but as determined as I can to help him.

I'd also add to what Catking says about the jobs and the future that there are now lots of Aspie support and social groups, where his 'difference' could be understood and celebrated. Who knows, we might even get to a world where neurodiversity is taken as a fact of life!

moosemama Mon 19-Oct-09 21:02:07

Goblinchild he does have a hair trigger and we were only discussing the other day how he has a huge volcano in his tummy that seems more likely to explode and make a bigger bang than a lot of people's volanoes. grin

It does worry me as dh and I can often see it coming and deflect or manage the meltdown, but I honestly don't know how they would handle it if he had one at school.

I have just ordered the Tony Attwood book and the Brenda Boyd one from Amazon and am hoping they will help me understand my little boy a little better. I do see him suffering and when I talk with him, he really struggles to understand himself why he is feeling the way he is, let alone be able to explain it to me.

The other day we were talking about why he had been particularly bad that day and he told me there is something confusing in the middle of his brain, but he can't see what it is and doesn't understand it. sad

It is so heartbreaking sometimes, I love him so much and I just want to be able to help him.

catkinq Mon 19-Oct-09 21:09:38

I think that in some ways arrogance is good - if you view it as confidence it is anyway. The really important thing is that your child is happy and being arrogant (once you learn to tone it down a little ) can be a positive thing if it enables you to ride over all the knocks that anyone different inevitably gets..

moosemama Mon 19-Oct-09 21:21:38

I agree catkinq, I am often in awe of how great ds thinks believes he is. I only wish I had half his confidence sometimes. Of course I think he is great too, just not for the same reasons. grin

I think he is happy for the most part, but we are struggling to find a status quo at home at the moment and I have been under a fair amount of other stress which has left me with a pretty short fuse recently thus exacerbating the situation.

We had a chat the other day about why Mummy had been so cross recently. I asked him why he thought I was being so cross and he said "I know why actually, its your hormones". The funny thing is he was probably right! blush grin

catkinq Mon 19-Oct-09 21:25:26

I think that this is great MM - my dd is that same - she doesn't do the "taking it all personally thing" but is very matter of fact and so actually often makes things easier as she sees everything as it is.

VerySpookyLennipillar Mon 19-Oct-09 21:36:18

Bookmarking - am here for you Moose if you need any help. Print out your first post and take it with you to see the GP, you have really captured DS1 with it.

I really think you should try and get him to see a Psych, you need some answers now.

moosemama Mon 19-Oct-09 21:39:35

That's it. It definitely works in his favour sometimes.

There was me all worried in case he was fretting because he felt that I thought he was a naughty boy, when the thought that he might be in the wrong had never even entered his head. If Mum was cross it naturally had to be something to do with her, not him. You have to admire that kind of self-protective thinking sometimes.

I am so oversensitive, completely the opposite of him and take every glance and comment as a judgement on me, even if it isn't. Its exactly this difference that means he will probably end up going through life far more self-assured than I could ever be.

moosemama Mon 19-Oct-09 22:02:58

Thanks Lenni.

sad Just had yet another row with dh about me wanting to go to the gp about him. He is so anti us getting professional help. He just keeps saying that ds is 'so bright' he will 'get by' etc etc. He can't see how handling ds day in day out is wearing me down. I tried to explain that without having him assessed I can't possibly know whether he is being naughty/cheeky etc or is just incapable of being any different. How the hell am I supposed to know when/how to discipline him if I don't know whether or not he can help what he is doing.

It breaks my heart to think of him trying to cope through senior school with teachers thinking he is just an arrogant, cheeky kid that has no respect for his elders. How will he 'get by' when his grades slide because he is constantly suspended or in detentions, or sent to the head, or stood outside the class. I have said this over and over to dh and he says he knows what it will be like for ds because his brother has been there (20 detention in the first half term etc etc) but he turned out alright. Yes and he also has a son that has been dx ASD fgs! Although typically his brother and his wife also refuse to accept the dx and refused any help with their son who is a lot worse than ds and has really suffered at school as a result. Why on earth would dh want that for our son?

Interestingly, the school called out the ed psych to dh's brother when he was in junior school (this was over 30 years ago) and his father physically ejected them from the house. hmm

I feel like I am banging my head against a brick wall with dh. sad

thederkinsdame Mon 19-Oct-09 22:08:35

Moosemama. I think you need to think about the here and now. If your DS is struggling, and you are struggling, then I would see a paed. With the right support, it won't neccessarily be a bad thing IYSWIM. You are in a very difficult place (I know, I've been there and it is awful to make teh decision to assess or not but sometimes, the not knowing can be worse as you have up days when you think everything is fine, then bad days when you know it's not. Believe me, I nearly went insane wondering. Strangely, although it hasn't been easy, knowing is a relief and has enabled us to move forward and get practical help. HTH and hugs to you. x

Goblinchild Mon 19-Oct-09 23:35:27

My son is able and heading for 10 GCSEs.
Without the dx and the resulting development of everyone's knowledge of how to manage him, GCSEs and even mainstream would probably have been unsustainable.
Your DH needs to come to terms with the idea that there is nothing wrong with your son, but that he is different.
If he denies it, you face a life of your DH trying to do the equivalent of teaching your pet to bark, fetch sticks and walk to heel. When you have a cat.
It's illogical, and a waste of effort. If you know you have a cat, you can change your expectations.Not lower, just different.

catkinq Tue 20-Oct-09 00:26:05

I've just had a similar discussion with dh about ds. He saying "he'll be fine" and me saying that he turn off, drop out and end up joy riding round the streets at 15 . I think that you just need to think how can it go wrong for each case - if you do not get help then he ould go off teh rails. if you do then you either find that he is just cheeky in whcih case you can change your strategy accordingly or you find that he is ASD or somethign and you can again adapt. He will always have the option of keepin gquite about it and/or getting undiagnosed - if he can get to the stage of being able to hide his symptons well enough for an employer to not notice tehn he can demand a second opinion claimin gthat the original psyc had got it wrong/he was "cured miraculously" etc and get it off his record. Lets face i tASD are not so common that it will hardly be a huge thing by the tim ehe grows up. What is your dh so scared of?

likeacuppa Tue 20-Oct-09 10:00:03

My sister I am convinced is undiagnosed ASD, she struggled all the way through school and was in trouble frequently, couldn't learn, had terrible problems finding/keeping friends, and ended up leaving with no qualifications. She's struggled for all of her adult life and though she copes, the effect of her early experiences has really shaped things for her, and she's not in a good place. She's incredibly brave, and keeps on going, and I admire her fortitude and coping strategies. But I wish so much that help had been available for her, and think about how different her life might have been sad angry.

A friend of mine has the same situation of a DH refusing to let her tell GP of her worries about a dc. I think in his case he's in denial because of the way it might reflect on him -- you know, is there something wrong with me -- because ASD is genetically linked. It's an awful situation for her, torn between loyalty to DH and frantic with worry about DC.

I hope you will be able to ask for help for your DS, it just can make so much difference. But you must be in a hard place at the moment.

WedgiesMum Tue 20-Oct-09 13:06:48

I really think you need to get a professional perspective on this. Just asking a GP or PAED for their opinion does not constitute a dx or mean you have to do anything 'with it'. But it will help you and school help him.

My DS is 10 and has Aspergers. He is an exceptionally bright child academically and has been assessed by the Ed Psych as among the top 1% of his peer group BUT that does not in anyway mean that he can get by. He just does not get the social things and needs them teaching to him over and over, he is chronically disorganised to the point of having to be reminded everyday to put underwear on, processing of instructions can be very very slow despite his ability and his anxiety levels are sky high. This means that despite coming across as arrogant (just like your DS) his self esteem is very very fragile, especially as he recognises that he is different but can't figure out how to change. Just knowing you aren't doing something right does not mean you have the ability to change it. Anxiety for DS leads to aggression and extreme blow outs of temper.DS's anxiety was not understood or accepted by his last school - who were not convinced by his eventual dx - and he was eventually permanently excluded leading to him trying to kill himself.

I really wish we had been able earlier to have a formal dx for DS and get him some help in school on the back of it as he would not have been in that position. Please do not try and struggle on alone as I know how hard that is, I had to really battle with DH over this but am glad I did. This is not about my or his feelings in the matter but what is right for our DS. In the future we will support him in getting a job (just as we will our NT DD) and will decide whether to put his ASD on the form. But that is unimportant NOW when the MOST important thing is to help him to learn the skills he needs to cope in the world as other children are doing and for my DS that means support in school. A dx is not a label, it is a signpost to help the professionals help him. It is not a stigma for DS it points the right people and resources in his direction to give him the best start in life for his individual needs.

Sorry if I have gone on and sound like I'm on a crusade. I feel very strongly about this kind of thing because of our horrific expereinces and just want to save others from it.

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