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Not sure what to do - feeling lost

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Hi all, firstly i apologise if this post is all over the place, im exhausted with everything going on and finding it hard to get my head working.

i posted a short while ago but to briefly recap my situation... i have 2 1/2 year old b/g twins (the girl is mild cerebral palsy and the boy is suspected ASD) , a 1 year old son and am expecting baby no.4 (a little girl) in july. i suffer from M.E and have done for over 6 years. i have a lovely hubby but he has quite a few problems of his own that add to my stresses


i feel very guilty posting here as my son is classed as 'high functioning ASD' (so most of his support workers tell me and they are on the assessment board so im inclined to believe them) and when i see how hard most of you have it i feel so bad for writing about him. he will undergo a proper assessment in sept where he should get his dx but i have been told that he should get one no prob, also his statement is well underway and should be in place for him and his sister starting at an integrated nursery in sept.


he has changed so much since january this year when he couldnt really communicate at all, wouldnt copy any noises, eye contact was abysmal and tantrums were earth shattering.

since the introduction of 'something special' on dvd a few months ago we are now having words and makaton signs from him so he can now communicate a little more, and seems to have come out of himself with the help of all his support workers. we also have managed to try and avoid what we found to be the triggers of some of the tantrums. he can be a very affectionate boy and his cons paed says we are very lucky as he does try to interact with us and does want a lot of contact. in fact he physically turns our face to look at him a lot of the time and repeats things so many times (most of his language is gibberish but he does rattle away) if he laughs he will make us turn our face to him (he even did it o his sister once when they were watching a film... she was not amused!)


i began to think that it was all down to speech and language problems and that things were easing with him... however i am now seeing that he has simply altered how he is. its hard to put it into words to explain what i see as most people just see him as being a 'normal' lad and its only when they spend time with him they can see a difference. the number of tantrums seem to have lessened from before but he is still very difficult when he flies into them, he is very physical now and either headbutts or flails his legs near anyone he can get to, he also charges at speed into people which can be very painful. he is a very big and strong boy for his age and i get the brunt of most of it, although now that his baby brother is crawling about, kieran tends to take it out on him a lot as well which leads to some dangerous situations meaning i can never really leave the room.

he seems to get into very hyper moods a lot of the time and will think nothing to picking up an object (the heavier it is the better) and throw it. he doesnt seem to care or even notice that people can feel pain and does some very hurtful things to me and his siblings.

ive tried so many approaches to calm him down but none ever seem to work, ive now had it suggested several times to make him a 'quiet spot' but i simply have nowhere to do this and feel at such a loss of what to do. he wont take bites out of food and will cram it in til he makes himself sick so i always have to cut the food up lots, he has even become very fussy about what he will eat and sometimes eats very little for several days... although he seems obsessed by having drinks of juice (he is so calm and happy when he has a drink) he wont drink out of open cups and its only lately that i finally twigged that its because he doesnt like the liquid touching his lips.

i find it hard to tell what part is just normal toddler and what is not.. i just feel like maybe i have a very difficult toddler with some odd habits, and that im not handling it correctly. in january this year i easily could say that he was ASD but now i feel so guilty as he generally behaves quite well when we are out (i have been told that this is because there is so much going on that distraction is very easy, although when i have to watch all three at a group its nigh on impossible so i avoid those groups now) its more when i am at home with them that i struggle and feel like a complete failure as a mum.

i find it so difficult as kieran manages to get in so many hits on me and on my bump which scares me but i have noone else to help me out with the situations when they happen.


a lot of the flailing legs,throwing etc occurs all the time as he seems to see no problem doing it so it isnt always connected to a tantrum making it difficult behaviour to deal with. he thinks nothing to pushing his brother or sister over (his sister more than looks after herself most of the time but with her being a little more stiff down one side she cant always land safely) or smacking them on the head with something (even caught him once with a pencil aimed at his sisters head and a thoughtful look on his face!)


has anyone else on here experienced similar? i know it doesnt sound much but theres so much more thats odd, i cant even remember all of it. kieran has his obsessions but seems ok on his routines etc he never seems to be really bothered on that side. if i mention that kieran is ASD to most people they turn round and say he cant be as he will give eye contact (always on his terms!!)


to anyone who has a similar age little one... what do you do to calm them down? if you have a 'quiet spot' where is it in your house?


im really sorry this post is all over the place, i feel totally helpless with the situation, and the waiting constantly is so difficult to take.

im worried how he will be when the new baby arrives, he wouldnt think twice about throwing things about near the baby and no matter whether i remove every item in the room.. he would still find something (he threw a chair the other day whcih nearly landed on baby brother)

when my youngest son was born, kieran ignored him right up until he began to crawl, never even looked at him.

i suppose it has finally begun to dawn on me that i wont have just the 'normal' toddler tantrums that will go away in a few years, and that i may be having to do all this for years to come. i feel so sad about it all :(


apologies for the down post, most of the time i am a fairly happy person and do feel blessed with my children, i love them all very much, just wish it could be a bit easier at times



Kieran and Jasmine 04/10/03

Isaac 29/04/05

little one edd 26/07/06

Edited by keepingmesane

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Sorry, can't really help as my lad is nearly 17, but just wanted to send >:D<<'> >:D<<'>


I'm sure someone will be along shortly who will be able to give you good advice.


Bid >:D<<'>

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AS and autism are never mild so don't feel guilty for finding things tough.


Just because a child can meet all the 'milestones' doesn't mean they don't have difficulties, my son is very able and articulate but even before his behaviour deteriorated, when he started school, he was very demanding in many ways and had more difficulties than we realised.


Com's problems have become increasingly obvious as he has got older and as other children have developed faster and in more typical ways - social communication is more of a problem when you get older because the complexity you have to deal with increases dramatically.


It wasn't like that for me when Com was 2 but at 13 I know just what you mean about the seeming obliviousness to other people's pain and upset, and how difficult it can be trying to protect his younger sister from his outbursts


wish I could help


>:D<<'> >:D<<'> >:D<<'>



Edited by Zemanski

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I haven't got much to say that's of any use really, only that things sounds tough for you.


Can you try and get yourself on an EarlyBird programme that the National Autistic Society run? I have heard good things about it. Failing that, ask your health visitor if she can recommend someone to help re the behavioural stuff (oddly for us it was my son's speech therapist who brought the 'naughty step' to our house - the bottom step of the stairs).


I hope that things go right that the Sept meeting.

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Have you ever read a book called 'More Than Words?' if not then try and get hold of a copy because it is really good at explaining behaviours and the reasons behind them. Here is a link to the book it's about one third of the way down the page.




It's also really good at explaining sensory issues and it sounds like your little one could have quite a few of those.


As for the hitting my son, now 9, did this all of the time. He found it fun to kick me in the knee until I fell over, he thought it a great laugh to hit you in the fact with a car or anything else for that matter. A speech therapist gave me a very clear explanation for this - that was that whatever he did it was NOT hurting him so he had no understanding that it was hurting others, even if they cried or were rolling around in agony because he did not understand his own emotions let alone anyone elses. That made sense to me so I used it as a yard stick. Matt would throw his toys just to see em roll or hear the crash they made :crying: He found it stimulating.


Your not a bad Mum just someone trying to put all of the pieces of the jigsaw in the correct place. Do you have a local support group you could attend? We had a meeting this morning and although we all still went home to our ASD kids and nothing had changed we had found a place to off load and ask each other the questions that we often dare not ask any of the professionals. We also had a laugh and support each other. It's not for everyone but many of us find it does help.


My son would never stay in a quiet place he always followed me around having his tantrum :( and it only made him worse and it would go on for longer if I locked him in his room. Listen to the experts and then do what is right for you and yours. He will grow out of this - but he may need some help along the way. I still need to remind my son that he is being a 'Space Invader' but now he understands what I am talking about and that makes it a whole lot easier. Find the book and ask about Early Bird because that might help to - if you can find the time to attend. If not ask for the notes and books that go with the course. Many Local Authorities run this course now see if yours is one of them.


Hope some of this has helped you >:D<<'>




PS High Functioning does not mean that the autism has any less of an impact - so don't let anyone kid you it does ;)

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Hi there Just felt really bad for you when I read your post. You've certainly got your hands full. It's hard to give advice when autism is involved as each child is so different to the next, irrespective of where they are on the spectrum. My youngest ds (aged 5) is severely autistic with SLD etc etc but ironically he is often more easy going by nature than my supposedly nt eldest who is 6!! All I can say is try to take one day at a time (easier said than done I know). You have so much to deal with and you need to take care of yourself as much as you can, even if that means just a very short time each day of relaxing and thinking calm thoughts. Perhaps you could give the National Autistic Society a ring? They have been a big source of advice and support whenever I've rung them. As already mentioned I know earlybird courses are meant to be good.

Sorry not to be of more help. Take care Elun >:D<<'>

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How can anyone say at 2and a half that he's 'high functioning'?? :angry::angry:

That's not a moan at you, hen, just the ###### stupid professionals who come out with these glib terms...

Oracles absolutely right too, high functioning DOESN't mean 'less impact', it just means that the impact is felt in different areas and ways...

So far as the aggressive behaviours go, I think the advice you've been given is the right one - a quiet spot for time out HAS to be the starting point (however difficult), and it has to be used consistently. It is really REALLy hard, I know, having been there (several times - our kids DO like to revisit certain behaviours!) and despaired that it will ever work... but it DOES. SLOWLY... It takes a long, long time sometimes for our kids to connect the 'response' to the behaviour, and then to understand that response and behaviour ARE predictable. Any sort of inconsistency will just prolong that process...

Stick with it, I'm sure you will get there. And in the meantime don't let anyone convince you your child's problems are anything less than they really are, or that he (and you) aren't as deserving and in need of support as anyone else in your position... >:D<<'> >:D<<'>





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Deb >:D<<'> >:D<<'> >:D<<'>


Wow, you have alot on your plate and no wonder you feel low :( I think the other replies are great, and would certainly agree that finding a support group or ringing the NAS would be worthwhile. We have started an Early Bird Plus course, and finding it really helpful. Not only are we learning more about ASD but we are also understanding why our child behaves and reacts the way she does. On top of that, we are able to be with other families and hear their experiences. Have you got anyone locally, family or friends, who could help support you and your family? Not everyone has I know, us included, but worth suggesting. Our daughter had horrendous tantrums and screaming fits. Felt it would never end and this was our life from now on. Very depressed for a long time. Constantly dwelled on the future and how the heck we would cope. Our daughter has MD aswell. They have lessened with time. She understands more , although they haven't gone away. We remove her from the room, doesn't work for everyone, and she will try and trash the room we've put her in, but she does calm down. If we are out its more difficult, and if we can return home we do. She went thru a stage of hitting any child in pushchair. Lead to terrible confrontations. The school worked with us on trying to make her aware that this was not acceptable. She tends to listen to her teacher more than us, and it stopped. She has occassionally hit her siblings, but never me or hubby. Please remember you are not alone, although it may seem you are at the mo >:D<<'> >:D<<'>


Debs x

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hi debs


i had been wondering how you are (potty in now on its way - watch out for abig box coming in the next couple of days!!!!)


everything you have wrote i could write about joe. i wish i could offer advice but i am struggling so much with joes behaviour that i too am at a loss. he wont even allow us to touch him at times and if we do will scream the house down for an hour. re the food - joe is the same - he is so skinny in comparision to his twin that i am starting to worry about him. joe will be seen next week by a specialist.


i wish that i could just take it all away for you especially as you now dont have long until the new baby arrives. could he be getting anxious about the new baby maybe and the change that it may bring to his life???


i would ask your portage worker if you cna do earlybird - they usually provide childcare as well. my course is held at a special school and the staff at the school look after the children. seeing other parents face to face may be a help for you. i just wish that i lived closer to you and i could help you out as joe andkieran are so close in age. keira suffers with joes behaviour as well but its amazing how she adapts - although she is now copying joe including lining up of the trains!!!!!!


email me if you need to talk anymore


>:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'>

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Your son sounds like he behaves a lot like my son did/does. My son is 4.5 now and I can totally sympathise with how you feel. People kept telling me that my son had the terrible twos apparently from the age of 1 to 3.5!!! People/specialists would see my son for all of 20 - 30 minutes and irritatingly see him on his best behaviour and then assume I was a neurotic mother. Took a long time to get anyone to believe me or listen, but there are things that you can do ... I kept a diary on almost a daily basis noting down everything that struck me as odd ie my son would go from being calm one minute to furious the next for no obvious reason, he would also band his head off solid plaster walls, etc. All of this behaviour almost seems normal after a while because us parents live with it day in day out. But when I look back at my diaries I can see lots of things that were far from normal. I firmly believe that it was the fact that I was consistent and kept the diaries that helped me get a diagnosis for my son (on Friday!!!). I frequently doubted myself and on a good day would think it's just me being a cr*p mum, then suddenly my son would do or say something that would reaffirm my belief that there was something wrong. My Health Visitor and GP weren't very helpful. I found that they kept saying that a child has to reach developmental milestones before he could really be compared (my son was aged 3 before we got our first referral to a specialist). I understand that, but it was extremely frustrating. Once my son started nursery it became more and more obvious what his problems were in particular he would be very aggressive and scare the hell out of the other kids. He was/is like a Jekyll and Hyde character, being lovely one minute and then flying into an almighty rage the next. Don't doubt yourself. Kept a written record, because it's easy to forget things day in day out and pester the hell out of specialists until they take notice. That's what happened with me ? I pestered and pestered until they got fed up of me (I suspect!). As a mum you know you child better than anyone, and I believe that mum's have a gut instinct that's always right.


Best wishes



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I remember the summer leading up to my son starting a specialst nursery, it felt like there was all this help and advice waiting there - but I couldn't get it until he started in the sept!


Other people have suggested contacting your health visitor - mine came out and visited me once a week for a few weeks just to make sure i was on the right side of sanity. We were very upfront about her visits and the reason I wanting them, and it helped just talking to someone who didnt need you to listen in return.


Have you come across home start? They a re a group that arranges for a suitable volunteer to come to you, usually once a week and 'do stuff' it can be in the form of looking after the kids so you can have a bath, escorting you to tescos so you'll have an extra pair of hands or just making the tea and listed to you moan. There is often a wait for this as they do try to 'match' you with a suitable volunteer, they try to look at personalities and similar experiences or professional knowledge. The vols are all just mums, mostly middle aged waiting for grandkids! I have one who is very nice. Some times it works sometimes it doesn't but its worth finding out about seeing if it is for you or not.


You could try to get a referal thru ur gp for some behavioural support in the form of a behav therapist/psychologist. I haven't done this so dont know how easy or not, it may be.


Dont feel guilty about using these services, you and your family are just as deserving as the next person. And don't forget yourself either, you must have time to get used to diagnosis's and the impact it will or wont have on the family. If you think you need counsilling - ask for it. Why not, it may help!


Keep reading on this forum, its great to use other peoples experience and knowledge. But do remember to keep in mind some self preservation - i spent too long reading about the troubles of the teenages being written about on here, before i realised that maybe concerntrating more on the next few months would make more sense!


keep in touch

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Ds1 will be 3 in July and was diagnosed with ASD last month. Like your ds he can be very quiet when we go out so to those who don't know him they think he's ok. But here's a brief list of what he's like:


1 - He will use adults hands as tools if he wants help with something, but he won't try and interact with them purely out of interest. The exception to this is rough and tumble games, which he absolutely loves.

2. He has very poor knowledge of language, or the ability to use language to communicate. His echolalia (which is mostly delayed) is very strong, making for some bizarre phrases :D. He seems to prefer signing and gestures, he seems more alert to them.

3. If anything really different has happened during the day he takes longer to go to sleep and spends the time (up to two hours) doing the same action on one toy.

4. He associates most things with very rigid contexts. Eg he knows that food and drink is in our fridge, can't or won't ask (non verbally included) if he's not able to take us to the fridge.

5. He has no fear of adults and will sit on their laps and play with their hands and touch their faces, but ignores other children (though older ones he classes as adults).

6. He likes to do a lot of things in a set way and gets upset if you deviate from the norm. Ironically on the surface he seems to cope well with big changes, it's the little things that set him off.

7. When he's playing with say a toy car he'll pick it up and study it (not always just the wheels) rather than pushing it on the ground. He'll touch a doll's face but can't pretend play with it. He prefers toys with a set aim, eg peg puzzles and building blocks and with the blocks he just builds towers, doesn't try to make anything out of them.

8. He has very poor spontaneous speech, has a fixation on counting to ten at the moment (can sometimes spend a morning just being silent and then counting to ten over and over again) but it's said purely for his benefit. Apart from that we've heard the odd word months apart and nothing for a while now bar the counting. He still hasn't called me "mummy".

9. Looking at things he seems to be undersensitive to movement, sound and touch.

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thanks everyone for your replies :)


oracle, my sister had told me about the more than words book and i had been searching for it but been unsuccessful, thanks to you reminding me i then went on to find it on ebay so have a copy on its way now which i am really looking forward to reading. also, many thanks for telling me about your son as its the first time i have ever 'met' someone who has gone through similar which has been a great relief and aid in understanding our son (even helped hubby to understand it more), everytime i have asked the 'professionals' why he did this i would get no answers.


lisa, i look forward to getting the potty (sure kieran and jas will find it very amusing, lol)

i cant get on an early bird course yet as we havent had an official diagnosis and wont get that til sept at least... i am just finding it hard to deal with the inbetween time especially when there will be a new arrival fairly soon to add to the worries.


he has had some really sweet moments today and i have sat looking at him or cuddling him and feeling guilty that i get so angry at times with his behaviour. i know he cant help how he is and most times i manage fairly well, but every now and then i cant help but dislike him which makes me feel rotten (still, i should imagine that most toddler mums feel that way, lol)


thanks again for all your replies

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