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elun1

help please

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Help!!

I've had the letter at last for my eldest ds (aged 8) to go to the screening clinic. My youngest ds is severely autistic with SLD. He's nearly 7. He was diagnosed on very first visit with classic Kanners autism. But my eldest is so different, in fact in a way I keep thinking of cancelling - not because I don't think he's on the spectrum I do. But I just don't know how I'm going to cope again.

I keep trying to work out if I'm being neurotic - I hope I am! This is how he appears - As a toddler he developed fine but speech was late (ish) first words not til 20 mths. In fact he had an appt with Speech Therapist but I had to cancel as I was actually in hospital having O on the day of appt. By the time another came through he was talking. He is very sociable though often inappropriate e.g. once when we were parking our car at the airport I turned around and he'd approached a man (a total stranger) and was telling him his theory of how the world began - he was 5 at the time. He's had various obssessions - lights, clocks, trains .... but they do fade away and he's always been able to be persuaded to do something else e.g. go for a swim. His social interaction is unusual - he fits the quirky eccentric professor type of thing quite well. He has quite a good imagination and did play imaginatively as a toddler though he needed some help to do so. He is impulsive and I'm afraid is often quite disruptive at school. He is extremely bright and although 8 recently scored as a 12 yr old in tests - and his Maths is outstanding. He is loving to immediate family but lacks empathy if a friend gets hurt. My dh thinks I should cancel the appt but I think he just can't face the truth. I'm not sure how I'll feel if he is diagnosed. I know he'll still be the same little boy I love but in one way I dread it as autism already has taken over life due to O's many difficulties. I love my boys but I feel very down right now. :tearful: Don't know if I can deal with this right now but if I don't I'm being a coward because W's difficulties (autism or not) are really starting to affect him

Elun xx

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Hi elun >:D<<'> >:D<<'>

 

This is a really tricky one for me to reply to and I've found it really upsetting - I'm not upset with you but I just had a glimpse of where my mum may have been coming from. I know all families are very very different, but there was just something that hit me.

 

We're a bit different in that my brother (severe autism and learning difficulties) is almost four years older than me - he was dx'ed before I was born. Teachers, social workers and health visitors raised concerns about me from a fairly young age and I was referred for assessment, but my mum refused to allow the assessment to go ahead. I never really understood why - I knew I was different and wanted to know why and constantly carried a different and not fitting feeling around with me.

 

I never really understood her actions but began to when I was dx'ed as an adult and SBC talked about guilt and the feelings my Mum may have had of having another disabled child - my mum wrote to the effect of, yes she had concerns about me, but bringing up my brother took all her time. I guess I'd never really thought of it from her perspective and I still find that really hard to do.

 

As an adult now, with a dx of HFA who felt 'different' all through childhood, I would have wanted to know as a child so I could understand rather than thinking I was bad.

 

Hence why it's so tricky - I can begin so see where you're coming from on the facing the truth thing and it helps me understand my own mum's actions, but at the same time had I known as a child, I think some aspects might have been easier - but I'm not sure, we can never know.

 

Sorry, I know that's not really helpful :(>:D<<'> I think you have to do what feels right for you - if you have some concerns, maybe it would be best to get them checked out as otherwise it will always be a lingering what if ... And if he is also on the spectrum, it's just that a spectrum - I'm (of course) very very different from my brother because ASD individuals are as individual as anyone. Maybe a dx, if warranted, will help you move on, and of course, you're in a really good position to provide support if/where necessary. >:D<<'>

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Hi Elun,

 

I can only try and guess how you are feeling right now >:D<<'>

 

But....I think you will cope if you proceed and you do end up with a diagnosis ... >:D<<'> you'll cope because you're an excellent mum, whose already shown great strength, and somewhere deep within you'll find that extra bit more strength and carrying on coping for both yr kiddies. >:D<<'>

 

It does sound like he might be on the spectrum, and if he is having some difficulties at school then a diagnosis if relevant will hopefully be helpful. He will still be the same ickle quicky boy that you love...and you'll continue to love him just the same - you know you will.

 

I think you might regret it if you cancel the appt - what if a year down the line your son has more difficulties then at present? - you'd have to contend with a whole bunch of mummy guilt then I suspect. I fully understand your not wanting to find out, and only you and DH can make that decision about wether to go or not....so long as you are both fully happy about which ever decision you make then hopefully things will pan out fine.

 

If you go for the appt, and you do get a diagnosis at some point, you can just keep it in the back of your mind for a while whilst you digest and decide what next.

 

Good luck with whatever you decide >:D<<'>

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I have no answers, but can empathise with you, my ds2 aged 12, was also an eccentric professor type, very endearing and old fashioned,, but the older he got the more distruptive he became at school, because he didnt have the diagnosis he was just classed as a dristuptive child, for that reason it is so important to get the diagnosis, I too didnt want to get it, for similar reasons, not much help to you I know. Best of luck. Enid

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Hi

I have 3 sons and I am forever looking at them and analysing the 2 that are NT. My eldest son has AS/SPD. My other two often display some similar behaviours that make my heart skip. I put a lot of their behaviours down to learnt behaviour as their role model is a child with issues, but some days I think oh god!! and I make an appointment to see someone about it and then I cancel for fear of what they may say.

You should go for the appointment and then you have a clear picture of what if any problems there are. Remember the relief when youre other child was diagnosed, it was for us, it was like having the jigsaw completed.

Be braver than me and go for it!!

Best wishes x

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Elun >:D<<'>

 

A clear diagnosis of what's going on would help you to get your son's needs met. I think that, ultimately, you would feel better if you know. I know it's a hard thing to go through, but you have to look to the long term too. How would you feel if he developed increasingly severe difficulties in school and did not have the right support? It would be good to get the right support in place before things get bad. I hope you can find the strength to go.

 

Do you have any support for yourself, friends or family you can talk through this with? Perhaps you even need a counsellor to help you work through it all. Perhaps if you postpone for now, it would give you the time to think things through a bit more and make a decision.

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>:D<<'> >:D<<'> Thankyou Mumble. Actually your reply really does help - I really value your opinion. I think W feels like that . He feels different but he doesn't know why :tearful: whereas O has absolutely no idea at all that he's different as his concept of 'self' has not really developed as yet. I'm really sorry if this dragged up some painful issues for you >:D<<'> >:D<<'> Your reply is like a confirmation of what I know to be right. I can't leave W to struggle. He is always getting himself into sticky situations. e.g all of his school were in the hall a few months ago and the headteacher told them all that if a missing/stolen piece of property was not returned that day then all the children would sleep there until it was handed in! My ds raised his hand and explained the impossibility of this due to the dimensions of fitting beds in/informing parents!! :o He ahd no idea this was inappropriate or that the head was being ironic/sarcastic. He does need help.

Thankyou xx

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>:D<<'> >:D<<'> Thankyou everyone. I know I have to face it really - it's just so hard. Dh does not support my decision but then he has never attended a single appt about O - he buries himself in work instead. I have some good friends at work and I have here. I would never have survived this long without the forum

Elun xx

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>:D<<'> Elun,

I understand the way you are feeling!

I have 2 boys on the Spectrum (2.5 year old dx 8 weeks ago) and now my little 12 month old daughter is showing the signs too. I have voiced my concerns and flit from being desperate to know- as i was with the boys, to being really frightened of hearing those words, that confirmation again! But she has been referred to the Proffessor who dx my boys and that in itself is making me feel very panicky.

It's kind of strange. I was so determined to get the boys diagnosed because i HAD to know, it was the not knowing that was driving me mad, but this time i feel i want to run! I am so scared she will be on the Spectrum too that its almost like if i dont take her then i can't hear the words. But deep down in my heart i know she is. But i can only appease myself witht he thought that if she is dx with ASD then we can use a very early diagnosis to her advantage! My boys are doing great, really great and i think it's because i've actioned so many supports for them and kept at it to make sure their needs are met properly- and i will do the same for her if its needed.

I know this is hard for you, and ultimatley you will know what is best for your wee one. I wish you luck in whatever you decide to do. >:D<<'> >:D<<'>

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