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JeanneA

When did you realise your child was autistic?

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Hi darkshine so sorry to hear of your experiences when you were younger but can understand how you must have felt what an awful time for you. Did you stay at that school until you were 16?

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i knew something was different about my daughter when she was 14 months old...she was my 4th child ...she would speak in the house but not if we went out..she would sit for hours watching disney films...she had a bag of bricks she would sit for hours she would line them all up all the red blocks would be together in a line and all the blue would be together in a line and so on...she had problems with her sensitivity to sound smell touch taste...she hated clothes she would always strip down to just her underwear as soon as we got home...she never slept there is loads more but im sure you know what im talking about this was all at 14 months old as she got older things got worse....she was dx when she was 3 she is 12 now.

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Welcome mummyoffive to this site nice to have you on here ;-) Yes I do know exactly what you are talking about. My son Glen is now 18 I knew there was something wrong from an early age. He to used line up bricks of the same colour still does in fact. His favourite colour is yellow and will always line up the yellow bricks first and still does. Glen also used to strip off at home when he was younger but thankfully he grew out of it!

 

Your daughter was diagnosed at an young age which is good to hear as Glen was 7. Do you get much help from the professionals? and can I ask if you have had any experiences of SS? :-)

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thanks for replies,we have now had our weekend spoilt yet again socail work phoned at 6pm to inform me that they will be delivering my ds(of 14) new child plan tommorow,wow how to spoil every ones weekend!!! then he had the cheek to say could he come round at 8am to the house on monday morning to discuss it,again the idea was to discuss it before they write it ,they just dont seem to get the hang of it!!!i have told them as 3 kids will be here and the fact that my 16 year old has already told them she cant cope with them being involved youd think they wouldnt even bother ,so have told them meeting needs to be held elsewhere!

thanks darkshine its nice to know that others had the same problems and its not just mine,how you managed i dont know ,mine just cant cope, and short of physical force i just dont think its going to happen and i dont think thats good for emotional welbeing,never mind here goes another great weekend ruined by social work!

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Hi jlogan nice to hear from you again. Sorry that your weekend is going to be spoiled I'm surprised they are coming out at a weekend I've never known that to happen. Let us know if the meeting will be held elsewhere?

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oh the meeting is being held elsewhere because i am not allowing them to have it here so it will be at a different time but at the local hospital on monday pm,and i think he is only dropping letter off,because we have a child plan meeting on wednesday next week and this should have been done ages ago,but this is the second time they have done it without discussing the contents first.the idea being we discuss it and then make up a childs plan,but no they do it their way!which is ridiculous as im not going to agree with it anyway so they would still need to rewrite it.never mind life goes on!

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I'm glad its been sorted out that you meet somewhere else. I;m really surprised the make up the child's plan without discussing it with you I have to say that has never happened to me. I do feel for you I really do I think you will have to move to England :-) anyway I hope Wednesday goes as best as it can and stick to your guns where the child's plan is concerned.

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Hi darkshine so sorry to hear of your experiences when you were younger but can understand how you must have felt what an awful time for you. Did you stay at that school until you were 16?

Yeah... and for the first 3 years I begged my parents everyday to move me, after that I realised they wouldn't so I did my best to put up with it - and then I couldn't get into a college because I couldn't explain my choices, I went to 1 interview and they wanted to know why I wanted to study things and what I was going to do with them and loads of other questions that I just couldn't answer about how to study and what I could offer, my other 2 choices rejected me by post for similar reasons :angry: They didn't give me a chance.

 

So I'd stayed at the blooming place that had been hell (as a 6th former) for another year and a half trying to do A levels in english and maths because they didn't offer what I wanted to do and I couldn't think what else to do. It all got on top of me (life, home, school) I was on a major downward spiral (I later realised I was having a breakdown) and the school requested I leave as they couldn't cope with my mental health requirements - I say requested... there wasn't really any choice they just made it sound like a request. Its the only time my mum ever left work - I remember calling her and screaming down the phone because I felt like I'd been thrown away and it was so unfair.

 

Looking back I wished I'd have not bothered trying to do those A levels there... but you see when I did the work experience and there was classes to help us pick jobs, well it was impossible cuz they just threw 3 big books on the table - they were the size of the old yellow pages and there were 3!! And they said "there's every job in there to pick from" and I just couldn't pick because they didn't say much and there were way too many to look at. All the job suitability tests came back with really stupid jobs that were of no interest... I remember that there was one for a technician in the army, an undertaker, and crossing patrol person... I have nothing against these jobs - its just, what do they have to do with each other? They aren't even similar... There were a few undertaker type options too like embalmer... everyone called me names about the undertaking thing for ages after, I'm not sure why.. I didn't think it was funny at all

 

So, that's why I thought it would be safer with the devil I knew... I was wrong... and anyway, life was to get far worse over the following 6 years - I don't think my experience at school helped with that, it was certainly a large contributing factor in why I got depressed in the first place.

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Yeah... and for the first 3 years I begged my parents everyday to move me, after that I realised they wouldn't so I did my best to put up with it - and then I couldn't get into a college because I couldn't explain my choices, I went to 1 interview and they wanted to know why I wanted to study things and what I was going to do with them and loads of other questions that I just couldn't answer about how to study and what I could offer, my other 2 choices rejected me by post for similar reasons :angry: They didn't give me a chance.

 

So I'd stayed at the blooming place that had been hell (as a 6th former) for another year and a half trying to do A levels in english and maths because they didn't offer what I wanted to do and I couldn't think what else to do. It all got on top of me (life, home, school) I was on a major downward spiral (I later realised I was having a breakdown) and the school requested I leave as they couldn't cope with my mental health requirements - I say requested... there wasn't really any choice they just made it sound like a request. Its the only time my mum ever left work - I remember calling her and screaming down the phone because I felt like I'd been thrown away and it was so unfair.

 

Looking back I wished I'd have not bothered trying to do those A levels there... but you see when I did the work experience and there was classes to help us pick jobs, well it was impossible cuz they just threw 3 big books on the table - they were the size of the old yellow pages and there were 3!! And they said "there's every job in there to pick from" and I just couldn't pick because they didn't say much and there were way too many to look at. All the job suitability tests came back with really stupid jobs that were of no interest... I remember that there was one for a technician in the army, an undertaker, and crossing patrol person... I have nothing against these jobs - its just, what do they have to do with each other? They aren't even similar... There were a few undertaker type options too like embalmer... everyone called me names about the undertaking thing for ages after, I'm not sure why.. I didn't think it was funny at all

 

So, that's why I thought it would be safer with the devil I knew... I was wrong... and anyway, life was to get far worse over the following 6 years - I don't think my experience at school helped with that, it was certainly a large contributing factor in why I got depressed in the first place.

 

I think that when anyone has gone through a long period of very stressful times, that it is VERY important to try to figure out what, if anything, can be learnt from it, and then draw a line under it [by that I mean decide that that period of your life is over and finished with and not let it be something that continues to affect your daily mood or choices etc].

 

Things do go wrong. Life can be awful at times. But by leaving the past where it is ie. in the past, that gives you the opportunity to find some good times and feel happier in yourself.

 

Be your own best friend. Look after yourself. Treat yourself. Make sure you do things that make you laugh and feel good.

 

From my own experience, I find that once you have been in a very stressed state for a long time, that you can easily be triggered and feel right back in that same level of panic and stress even over relatively minor things. It is like our body has learnt to go from zero to freaking out within seconds, and that is not a good way to feel.

 

It sounds like secondary school was hell for you. But you have identified WHY it was so difficult for you, and so if you were looking to study again, or in the workplace, you would be looking for an environment that you felt comfortable in and which did not require so many changes of environment, people throughout the day and day to day.

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I think that when anyone has gone through a long period of very stressful times, that it is VERY important to try to figure out what, if anything, can be learnt from it, and then draw a line under it [by that I mean decide that that period of your life is over and finished with and not let it be something that continues to affect your daily mood or choices etc].

 

Things do go wrong. Life can be awful at times. But by leaving the past where it is ie. in the past, that gives you the opportunity to find some good times and feel happier in yourself.

 

 

It doesn't effect my daily mood at all - I drew a line about 5 or 6 years ago (with the help of a psychologist) I just meant that it played a key role in my life especially throughout my teenage years - its like a parallel to the post title isn't it? Instead of when did you realise your child was on the spectrum - for me its more like when did people not realise :lol:

 

I've been told many times about leaving things in the past, but there's been times when I have had to explore the past because whether I've liked it or not I've needed to in order to move on. And also because there are times that me delving into my past can help people learn from it too. And in addition I'm not scared of my past, I don't have repressed memories, or unexplained nightmares because I've already delved deeper than most people ever go... It doesn't scare me to go there even when its the bad stuff - which comparatively secondary school was nothing.

 

The past formed me, shaped me, made me who I am today, it doesn't rule me but I have to acknowledge it for what it is - without my past I wouldn't be me - in my daily life I don't spend barely any time in the past - except on this forum :rolleyes: where all too often the past is the very thing that makes me understand what people are saying sometimes - without my experiences I couldn't reply :)

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hi Darkshine and Sally thanks so much for your comments. I like Sally am sorry to hear what you have been through in the past. I can understand how your experiences though do help you understand people on the forums and you can share your experiences with them. At least you saw a psychologist and have moved on now with your life. It is great that you are on this forum giving your advice and experiences and long may that be the case, thanks darkshine hope you have a nice weekend have you got anything planned? :-)

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I seem to have misunderstood somewhat then. Yes, we all use our past experiences to help us make better future choices. And it is awful how these bad times can affect how you feel for months or even years into the future. I know that you experienced these bad times due to it not being recognised that you were on the spectrum and not receiving the support and help you needed [or even the right school placement]. I know that for years I [and many other parents are doing the same] from about the time my son was aged 3 up until quite recently [he is now 11], we have just been round and round the educational system and special needs system and seen so many different professionals. And it all went so badly, and took so long. It is amazing that anyones survives it isn't it. And I know how quickly I can now find I feel stressed out. I think it will take me a long time to get back to feeling what should be "normal" for me.

 

What about you JeanneA. I know you went through some very stressful times just before Glen went into the care home. Are you starting to feel better in yourself? And do you also find that when something stressful happens, that you are immediately transported back to those feelings you had when you were at your worst. For me, it is like there is no graduated increase. I think it is just an indication of the chronic level of stress alot of us have lived under. It isn't healthy.

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Thanks guys :D

 

That's ok Sally, I try to reread what I say and see what I "sound" like... I realise that I struggle to get the tone right sometimes ;)

 

Things in my life are far from perfect - just can't be bothered to keep going on about it or it makes me look bad :lol: I've kept quiet about a lot of things going on over the last 5 months.

 

I wouldn't want to have been in your shoes (or the other parents) because its an even more frustrating position in some ways, you can see what's going on sometimes and can't do anything about it cuz the systems not the best all of the time, and maybe you feel powerless and stuff when you got your kid there and they can't explain either but cuz your their parent you know things aren't good for them. I don't know how you all do it/did it - and even though life is stressful and not normal for you - please know that I think you are all incredible and strong people and I respect your opinions and experiences.

 

People like you help me realise how hard it must have been for my parents at times - unfortunately for my parents they took a route that made things worse - they didn't know that at the time so I've learnt to forgive them of that.

 

When you say that you return to stresses and don't feel like the normal you - I understand that too - but for me there's never been a normal happy adult me so my road is different, but not completely dissimilar - it is difficult to not fall back into a previous feeling, especially at times when things are hard and it sometimes feel like going around the same old arguments and struggles for me - I assume its kinda like that for you to? When you are doing everything you can for someone and you think you got somewhere and then something happens and its like "will things never get better" kind of thing.

 

Sally I really admire your strength and determination to help others - it might not always feel like it to you, but you come across as a very strong, knowledgeable person, and even though it all is such a struggle, I think we do all get their in the end as long as we keep on going, keep on fighting and yes, maybe even keep on hoping.

 

All the best

 

Darkshine

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I wouldn't want to have been in your shoes (or the other parents) because its an even more frustrating position in some ways, you can see what's going on sometimes and can't do anything about it cuz the systems not the best all of the time, and maybe you feel powerless and stuff when you got your kid there and they can't explain either but cuz your their parent you know things aren't good for them. I don't know how you all do it/did it - and even though life is stressful and not normal for you - please know that I think you are all incredible and strong people and I respect your opinions and experiences.

 

People like you help me realise how hard it must have been for my parents at times - unfortunately for my parents they took a route that made things worse - they didn't know that at the time so I've learnt to forgive them of that.

 

 

I think Dark that as a parent you just have to do it! I tell myself it's part of what I signed up for having a child/children. Some of them will have more needs that others and I am just thankful that even though my son has problems they are not as bad as they could be - there are a lot of other children out there with worse ASD or cancer etc. I just try to do my best for my son and only time will tell if what I think is best turns out to be so. I'm hoping not only with Finn's problems but with my parenting in general it turns out both my husband and I when they are older the children can look back and say we got more right than we got wrong.

 

I'm glad that whilst your parents weren't able to support you in the way you need you are now coming to terms with this. This is why parents need support themselves so they can support their children.

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Wow someone wonderful comments made ladies :-) I do so admire you all and what you have and are still going through.

Sally you asked how I was getting on since glen went into the care home last year. Well, it has been extremely hard for me and still is to a certain extent. It wasn't an easy decision but the right one, however I do miss Glen not being around but I know that I could not have coped any longer. My health was deteriorating rapidly, I was extremely detressed/depressed, my nerves were shred to bits as the saying goes lol In the last year unfortuiounately I have developed oesteoarthritis. I had been backwards and forwards to the hospital and to my GP. I am currently on medication which helps. I am in quite a lot of pain at times if I do too much in the way of 'physical' jobs. The aches and pains are in my shoulders, back and thighs in particular. I do have trouble sleeping as I have to keep turning my body all the time to try and get comfortable.

 

Anyway thats enough of me feeling sorry for myself, but just thought I would put you in the picture as you asked after me. I still suffer with stress, there has been many incidents at the care home concerning Glen particularly in the first 6 months in regarding his aggression etc. I still get stressed and anxious when he comes home although of course I love to see him and have him here, but because he can still be very unpredictable in his behaviour we are always on our guard! However the last couple of months Glen has been much happier/calmer/less aggressive in the care home and when comes for home visits which is fantastic to see. :-)

 

We as parents of autistic kids have all lived under a very high stress level and still are I'm sure, I know I did and still do when something occurs. I felt so ill those last few months before Glen went away, everyone remarked upon it, how poorly I looked etc. I do feel better in myself now, but I am sadly in a quite a lot of pain (health wise) at times.

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I think Dark that as a parent you just have to do it! I tell myself it's part of what I signed up for having a child/children. Some of them will have more needs that others and I am just thankful that even though my son has problems they are not as bad as they could be - there are a lot of other children out there with worse ASD or cancer etc. I just try to do my best for my son and only time will tell if what I think is best turns out to be so. I'm hoping not only with Finn's problems but with my parenting in general it turns out both my husband and I when they are older the children can look back and say we got more right than we got wrong.

 

I'm glad that whilst your parents weren't able to support you in the way you need you are now coming to terms with this. This is why parents need support themselves so they can support their children.

 

 

Well said :thumbs:

 

I think regarding my own parents there must have been a lot of frustration... I had a flash memory the other day, I was thinking of something after I read about some of the inappropriate things kids say, my memory was of being very little maybe 3 or 4 no older and sitting on my mum's lap and slapping my mum in the face because she was smiling at me. It makes me wonder how hard it must have been for her to bond with me... I wasn't an easy child... she was depressed a lot... (not just because of me there was way more stuff than just me) but it makes me sad that she didn't understand why that might have been you know? Because she might have felt it was her fault and it wasn't, and she might have thought I didn't love her and stuff...

 

That's why I really like interacting with the parents on here, because I get to see what its like on the other end of things, I get to see the extreme emotional rollercoaster that raising a kid on the spectrum can be like - and the constant battles that seem to occur at so many stages - and I think its good for parents to talk to people like me who can sometimes explain what these kids are going through - and maybe by doing that we can all understand each other better.

 

Its sad that everything went wrong with my family, and even though my parents still deny that I have AS, they have said over the last few years at least that they are proud of me - even though I don't really do anything or go anywhere and I haven't achieved anything and stuff.... :rolleyes: still.... its nice to hear it :)

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hi darkshine I am sure your parents are very proud of what you have achieved. Remember they are there for you. I wish Glen was more able like you are to be able to get your point across and your feelings etc, but sadly he isn't able to he is very severely autistic and only has the mental capacity of a 3 year old.

 

I always enjoy your postings on here and think your contribution to this forum is fab so please keep it up. :notworthy:

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I have fibromyalgia, so am in constant pain and feel tired all the time.

 

I've also just been diagnosed with diabetes - so, yet more pills to look forward to.

 

I already have high blood pressure.

 

I have an older sister with learning difficulties, a younger brother with mental health problems, and my older brother had a stroke just before christmas and has now has permanent brain damage [and we are waiting to see if and when he can begin to gradually return to work]. But he's been told he will never get back to where he was before and maybe unable to retain his former job.

 

Surprisingly he has developed alot of autistic traits - difficulty making decisions, cannot concentrate, cannot plan and sequence things, struggles with word meanings, takes language literally, no emotional control, gets upset easily and then can be hysterically laughing the next, very impulsive - it is quite bizzare to see him. He has almost turned into my son!

 

But as others have said. I have seen children who are much worse than mine, and I really don't know how they cope. It would be nice to imagine a time when all I have to think about is myself - but that never happens unless you are a hermit on a desert island.

 

Sorry to hear about you being in pain JeanneA. It can get you down. Hope you find something that helps [medication, diet, exercise, considerable amounts of alcohol :wine:

 

But altogether [with having an elderly parent too] - sometimes just thinking about them all makes me feel like I am going to hyper ventilate. I just feel so much responsibility on me to make sure everyone else is okay.

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Another question I have for parents is whether you feel guilty about your child being on the spectrum. Afterall, they say it is probably mainly or partly due to genetics.

 

I had to have hormone therapy to conceive. And I do wonder whether "not getting pregnant" was how it was supposed to be for me and my husband. But once you have a child - whatever the outcome - I don't think you regret having them. I certainly didn't. I just sometimes feel guilty that it was my fault [or my DNAs fault - not that I have control over it, but that doesn't stop you feeling guilty anyway].

 

I only have 2 kids. Sometimes I wish I had had alot more.

 

My son went to play with a friend of his yesterday [he is also ASD], and he has lots of brothers and sisters [i think they are 6 kids in all]. And I felt like that family was so big that they could all help eachother. My son just has his sister. Maybe I am just thinking about it all too much.

 

Off to feed my goats now - TTFN.

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hi Sally lovely to hear from you again. I'm so sorry to hear of your situation. It must be really tough on you regarding your siblings and of course your own health. You have a lot of people to look after/look out for, I don't know how you do it I really don't.

 

Regarding your question about whether us as parents feel guilty about our kids being on the spectrum well I do. I always felt it must be my fault but who knows? Since my son Glen was 18 last week I thought to myself he will never experience what my eldest 2 kids have and will. Glen will never be able to live independently, which makes me feel very sad, but then as my daughter said to me he doesn't know any different and is probably happy in himself doing things he likes to do.

 

No I do not regret having Glen but just wish things were different for him.

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One other thing you said in your posting Sally:-

 

"Surprisingly he has developed a lot of autistic traits - difficulty making decisions, cannot concentrate, cannot plan and sequence things, struggles with word meanings, takes language literally, no emotional control, gets upset easily and then can be hysterically laughing the next, very impulsive - it is quite bizzare to see him. He has almost turned into my son! "

 

What you have described fits my eldest son to a tee! He is 26 and had a speech delay as a young child but went to a brilliant speech therapy unit at 5 for just over a year and did fantastically although he was left with a slight stammer which he still has. Anyway for the last year or so my son seems to have developed these traits that you have mentioned and I am quite worried about him. He has just started a new job recently in London and has moved there also, he is struggling to get through the day due to poor concentration, difficulty making decisions, etc. He hasn't registered with a G.P. yet but I will encourage him to do so, he really needs to talk to someone and to get some help.

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We intended to have at least another child after my son but due to my wife's health that never happened. And were he has two older siblings 10 and 12 years older, (from my wife's first marriage) its not the same. I remember as a child, there were 5 of us, tagging along with my older brother, probably without him I would not have been so adventurous. Also being protective of my younger sister which probably made me bolder than I realy was. There was always someone there to play with, or fight with. Never on your own. The only time you were alone was when on the toilet. :lol: :lol: But I'm going a bit astray now.

 

Do I blame myself? well I suppose deep down I do. To a degree I blame myself for not realising/recognising the was anything wrong earlier.

 

The genes we pass on to our children, we inherited from our parents. Our children are a mix of generations of genetic input.

We all have 8 Great Grandparents, 16 GG grandparent, 32 GGG grandparents, and so on. Each one of them contributes part of their DNT to us.

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I blame myself at times.

 

Especially since I am a type 2 diabetic and I was obese when I was carrying both children and there is a significantly increased chance of ASD in children of obese mothers (and there is a significant study to show this increased chance).

 

I cannot however dwell on that. I may or may not have been a contributing factor. It might not have happened if only blah blah or it might still have done so.

 

It is what it is and I need to focus on that and just get on with it. Feeling guilty is just indulging in self-pity and it is of no benefit to me, my son or the rest of the family. That's what I say now but not what I think in my darker moments.

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I don't feel guilty that L is autistic. There is a strong chance in our case that it's genetics - there's quite a strong thread in my hubbies family, and as research shows it's usually on both sides. There's nothing obvious in my family but there's always something, like the cousin who still lives at home at 50 etc etc. There are things that happened when I was pregnant, I was on meds for high BP, was in a car accident at 30 weeks etc but any of all of those things could be at fault. I was similar with my daughter, other than the car accident, and she's not autistic.

 

I feel sad that we don't have what I class as a normal family life, and I sometimes feel guilty that my daughter wont ever have a normal sibling relationship, but equally I see what a wonderful young lady she is turning out to be, she is kind, generous, patient, unbelievably compassionate and a lot of that is due to her having L as a brother.

 

Life is what it is. I don't imagine any parent of a child with any special need wanted that life for themselves, I know for me accepting things was never hard - I've always been realistic about what his needs meant for us as a family, and for him, and I think that's benefitted me as I've always been delighted with the progress that L has made rather than disappointed by what he hasn't achieved. Not to say that life isn't hard sometimes, it definitely is and I'm not quite as happy and positive at the end of two weeks school holidays than I am at the start of them ;) But you shake yourself down and tomorrow is a new day.

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Hi Lynne lovely words you wrote. :-) It is not always easy but you do have to carry one each day doing the best you can for your family thinking of all the positives and not the negatives, not always an easy thing to do but as a parent we each should think that way I guess. :-)

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One other thing you said in your posting Sally:-

 

"Surprisingly he has developed a lot of autistic traits - difficulty making decisions, cannot concentrate, cannot plan and sequence things, struggles with word meanings, takes language literally, no emotional control, gets upset easily and then can be hysterically laughing the next, very impulsive - it is quite bizzare to see him. He has almost turned into my son! "

 

What you have described fits my eldest son to a tee! He is 26 and had a speech delay as a young child but went to a brilliant speech therapy unit at 5 for just over a year and did fantastically although he was left with a slight stammer which he still has. Anyway for the last year or so my son seems to have developed these traits that you have mentioned and I am quite worried about him. He has just started a new job recently in London and has moved there also, he is struggling to get through the day due to poor concentration, difficulty making decisions, etc. He hasn't registered with a G.P. yet but I will encourage him to do so, he really needs to talk to someone and to get some help.

 

My older brother is a health fanatic. He has run 10 miles a day every day for the last 30 years. Since my son being diagnosed, I always wondered IF he may be Aspergers, or just some traits. But now, after the stroke, he is very different and does appear quite autistic. His stroke was due to a split in the Cartoid artery. So it was not a bleed or a clot [which are the two most common types]. This split in the cartoid artery allowed blood inbetween the artery walls that did form into clots, and due to the pressure of blood in the cartoid artery, tiny blood clots had been sent into his brain over a period of time. We don't know how long, but the scan said it was deep, extensive and wide spread.

 

Then just before Christmas he got quite ill. He had a very bad headache, nausea, and developed numbness down one side. He began being sick. He want to the GP and A+E, and they both sent him home with suspected migraine! Then the next day, one side of his face was drooping, so they admitted him then. Apparently, his type of stroke [section in the cartoid artery], is the most common type of stroke in younger, fit adults. So how both the GP and A+E missed it is beyond me.

 

He has a very stressful, well paid job working in computer programming, where he is a trouble shooter and problem solver. He is now unable to do that job because he no longer has the skills he used to. He has returned to work for an hour a week [working from home], and we are waiting to see what improvement, if any, there is over the next 12 months.

 

If your son has developed these traits recently - and they have not been lifelong - then I would seriously recommend a visit to the GP because there maybe an underlying cause. Afterall these are "neurological" changes, and so really needs investigating.

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Hi Jeanne thanks again - I have very little planned for my weekend, was going to go out yesterday but someone came around that needed my day more than I did so not a lot got done.

 

To all you parents who felt/feel guilty - I don't think you should, I'm pretty sure my parents deny my dx because of guilt... I don't think that's right though cuz how could anyone know what their kid is gonna be like before they are born? Nobody has given a fail-safe guide to what causes autistic spectrum disorders yet - so you couldn't have done anything or known any different prior to having your kids (unlike with some genetic conditions where there are clear carrier genes).

 

My brother... he's older than me by about 9 years, he's worse than me with his traits... my mum said that he suddenly changed after the MMR - maybe this is true - maybe this is coincidence - I don't have an opinion on it as I wasn't born then, and my brother is undiagnosed but everyone has always blamed themselves and each other over him and his behaviour over the years, and the family has literally been torn all ways because of this, it isn't healthy.

 

Most of my family now say that my brother is sort of evil, that he knows exactly what he is doing, that he is manipulative, selfish and doesn't care.... I don't think that this was/is always the case but now he's 40 it's kinda hard to make people see because there's a lifetime worth of evidence against him.

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hi again dark, thanks for what you have i.e. the guilt us parents feel. Sorry to hear about your brother, how does cope day to day, has he got a job? I can understand how your parents feel guilty but like you said we as parents do not know how are children are going to be as they grow so we clearly should not feel guilty it is not our faults even though we feel it is!

 

I hope you have a nice evening sorry to hear you didn't have the time to yourself yesterday. always good to hear from you. take care.

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On the subject of smiling, when my lad was little, if asked to smile for a photo, he would put his fingers up to his mouth and physically push up his mouth to form a 'smile'. He never smiles now really, mind you, he is 18! I naturally have one of those faces that is quite blank and unsmiling. Less so now, as I make a concerted effort to put a smile on my face and it is more natural now, but I was forever being told to 'cheer up' when I was totally fine. My lad has the same expression, which is maybe what has motivated me to try to change my facial expression, as now I know how I used to look!

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Yes, my son also feels his face to 'check' he has the right expression. Especially if I comment "you look very angry".

 

And I wanted to go back to the original question. Because although I knew that something was not right or was different from an early age 2-3 years old. I did not suspect autism. For a disorder that is being diagnosed about 1:100 children, there is very little general information out there.

 

Knowing what I know now, things should have been alot faster. And I think that parents should be given information as standard by the Health Visitor about ASD.

 

Mind you, my HV wasn't very good. I was quite down after my son was born. I think that his emotional upsets made him quite difficult to understand. But when I mentioned to the HV that I was concerned about how I was feeling after the second birth, I was told that everyone feels like that.

 

I just feel that so many opportunities were missed by so many different professionals.

 

But I did not suspect autism - probably because of how differently it can be with each child. Because a child can be diagnosed with a speech disorder when their speech and language skills range from completely mute, to non-stop chatting about their favourite obsessions and sounding pedantic.

 

So, how long AFTER you noticed that things were different, did you actually begin to see and understand that maybe your child was on the autistic spectrum.

 

For me it was at about age 5-6 that I could see HOW he fit the criteria [after having concerns from 2-3 years old].

 

It was after a talk I attended given by a woman called Olga Bogdashina who talked alot about the sensory issues and speech and language difficulties those on the spectrum have. She was the first person who seemed to describe my son completely.

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hi again dark, thanks for what you have i.e. the guilt us parents feel. Sorry to hear about your brother, how does cope day to day, has he got a job? I can understand how your parents feel guilty but like you said we as parents do not know how are children are going to be as they grow so we clearly should not feel guilty it is not our faults even though we feel it is!

 

I hope you have a nice evening sorry to hear you didn't have the time to yourself yesterday. always good to hear from you. take care.

 

My brother has bounced from one disaster to another, he semi-disappeared some time last year when he just suddenly decided to move, we know the city he is in as he has called another family member. Unfortunately nothing ever works out for him, nothing lasts for long.

 

I cannot say for sure whether he is on the spectrum - but there's always been something different about him, and even before my dx I knew we were alike in many ways, except his behaviour is far more extreme than my own. Following my dx I am more certain of this - but I refuse to interfere in his life like that - I've told our mum what I think but she still denies my own dx so I don't really think it was what she wanted to hear.

 

And anyway, the rest of my family refuse to see any similarity between us even though I've seen it for years, long before I ever heard about autism or aspergers, and I still see the similarity now. Unfortunately he's kinda stuck mostly on his own and there's nothing I can do about that...

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Hi Sally yes I do agree that my son should see a G.P., however he currently doesn't have one as he has just moved recently to London to be nearer his job. When he lived in Oxford, he had a very good G.P. who he did go to see because of his anxiety problems, she referred him to a specialist and my son did have sessions with him for a while and also had to do some breathing exercises etc at home. My son though did not feel these helped at all which was a shame. I will certainly be encouraging him to register with a G. P. as soon as possible although he is now thinking of moving again because the rent is too high for him! He is so indecisive and always has trouble settling in new surroundings which is probably part of the problem now as he has been like this in the past when he's moved, which is quite a few times.

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For us it was when Ethan was a about 3 years old. The normal toddler tantrums were a lot more extreme and unreasonable that our other children and his peers. It was then we started looking at what was different about him.

 

There is ASD in the family, so it didn't take long to read up on the behavioural aspects, most of which fitted him - especially the need for routine and the issues we had when the routine was broken.

 

He eventually got a diagnosis of Aspergers aged 5. After a fair few bumps at Primary school with a less than understanding headmistress , we are fortunate that is now at a very good school and in mainstream education - and thriving.

 

He is almost 11 now and we know we have adolescence to get through but he is amazing to be around.

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Hi mookamo its nice to have of a positive story in your son's case its just a pity it doesn't happen for more children with ASD or Aspergers. You probably with have a tricky time when he reaches puberty, hopefully it won't be too bad, every child is different.

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The transition to secondary school is a huge step for any child, nevermind one on the spectrum.

 

They go from being the oldest children in a relatively small school environment [in one class all day long], to suddenly being in a school size that can be thousands, with class/teacher/pupil changes for every lesson and the youngest/smallest in the school. And all the routines are different.

 

It took my daughter a good 6-12 months to fit in and settle down, and she's NT.

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Just add we were worried how our son would cope in mainstream secondary, but we have a realy good SENCO who realy does understand all the problems, and realy is able to foresee problems and avoid them. It has, so far at lest, turned out better than we had hoped for.

Edited by chris54

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Hi Chris I am so pleased to hear things are working out for your son in secondary school, it's nice to hear of some positive stories for a change!

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