pingu

thanks BD as always your advice is appriciated. i will have a play and see what happens lol. cheers hun. x

Hi there. could someone explain how i can put some voice recordings onto CD? I have captured some ramblings on my MP3 player and am trying to put these onto CD but i cant do it as my cd burning software wont entertain the WAV file. Havent a clue what it all means, .... shaz

HI Everyone. I am in touch with a mum in america who has 2 children, her youngest has autism and her eldest is wheelchair bound through disabiliy. She sent me a message today asking for advice, but sadly i cant give her any as i have never come across this problem before. I was hoping you might be able to help? I thought at first her lad may be starting with a touch of tourettes, but on the other hand i dont know. This was her post ... (she doesnt mind me posting it here, so i hope this is ok) Hi there, i hope you are going okay. We are okay here. I really had a question to ask you.. Colby has started having throat spasms, and panic attacks because of it. Have any of your kids had this problem? I just feel so bad for Colby, he is sad all the time, and is refusing to eat. He has lost 3lbs just this week, and is very larthagic and weak. I think the spasm are are being triggered by the lithium he is on, but they get worse when he start focusing on the spasms. He spends hours crying about dying in his sleep. I just want him to be happy again, and i dont know really what to do. Every relaxation technique i have tried doesnt help. If you have any advice to give me that would be great. These spasms actually block his airway completely and it is scary for all of us. Get back to me when you can, Any advice i will send back to her. kindly recieved. Thank you in advance. shaz

Thay said WHAT????????? My word ive heard it all now. your problems sound similar to ours hun. im still chewing all this over so thanks for your replies, . im going to hit my head on a brick wall now,

Hehehhheeehheeeeee. You cant argue with that one can you? Maybe next time you will have to tell him he has 10 seconds. lol Take care

hi there. yes that does make sense <'> thank you all so much, and BD thankyou for putting it in a way that was spot on, thats what i was trying to say. im going to print off your replies and memorise some of the points for the psych when she comes. you have been wonderful. thank you. x

Hi carrie. I like the idea of the soundproof head band, but, going with the sensory issues im not sure i could get my boy to wear something on his head, its bad enough trying to get him to wear a hat in summer. but thats just him, he doesnt enjoy having anything on his head. the tree sounds fun. he would certainly love that - anthing to clamber on he would love and his love of trees would go hand in hand. so good luck with your designs, i hope you will keep us posted on them, shaz

Hi There. I have signed it and sent it. Lets hope it doesnt fall on deaf ears. shaz

thank you Clare. I think ill head up too, im going round in circles here. Its just becomming so clear he is different, and i dont know whats happening to him right now. have a good sleep hun. shaz

Hi there everyone. (Happy Easter <'> ) Forgive me but I am once again on a ramble. Over the last 3 years since the time of Kieran?s diagnosis, we have been coming to terms with his aspersers and learning a lot about it in the process. This site has been the biggest help I could have wished for, you have all been brilliant. But I am wondering if it is actually aspergers he has??? Let me explain. For the past few months he has got so much worse in terms of. "change" and behavior "obsessions" and little attention for anything else, when he was diagnosed he was said to be "at the milder end of the spectrum" (he was 5 at the time) and I clearly remember going through those meeting scratching my head at questions like "does he have any routines?" and "is there anything he does repetitively?" At the time the only problem with him (as far as we were concerned) was that he liked to watch fans / drains / bouncy castles, got upset if he was over stimulated and he spun his arms very fast when nervous. There was none of what we have now. Now we have the full works - obsessions / interests / routines / compulsion / hyperactivity / behavior / aggression / very intense ideas (and HUGE meltdowns if not carried out) - he has a reading age of 5 and a writing age of 4 (and he is 8.) He eats with his fingers - has a meltdown if a tap is dripping because he worries about what will happen about everything all the time. He is the original MR Worry and constantly asks "but what if". He washes his hands every time he comes into the kitchen, and when he's eating he washes his hands after touching any of his food, (he eats with his fingers). We have tried and failed to stop much of the behavior, He has muscle tone problems he's developed a "lean" which is becoming more obvious by the day and has the attention span of a sparrow. And what im not getting is that, aspergers kids are 'supposed' to have No speech delay (he did) no signifitent learning disabilities (he has) I could go on but ill be here all night... so anyway, I was looking once again around the internet and I keep coming across this same thing, and it reads ..........."As in autism, Asperger syndrome shows impaired reciprocal social interaction and restricted, repetitive or stereotyped patterns of behavior, interests and activities. Unlike autism, intellectual ability and syntactical speech are normal" so im here wondering if :- 1 ) I am over exaggerating 2 ) he has autism and not aspergers 3 ) he has adhd / aspergers 4 ) he has adhd at all 5 ) he has learning difficulties on top of (or) as part of the aspergers 6 ) but if 5 were true how come 99 % of what I am reading is telling me that AS kids don?t "act" like my son. He devotes his life to a bathplug, and whilst I understand his need to do this, and give him the time and space to do this, and deal with the meltdowns when he is unable to do this, I still have yet to find one documentary / book /experience. where the child has such an intense nature, such a time consuming and mind boggling level of activity. Apart from the meltdowns which all documentaries seem to focus on I can find no similarity to him. I didn?t mean that bit in a way that I am looking for someone to compare him to, and I understand our kids are very different and no children can be compared - its just sometimes I don?t think he's got AS because he seems to have so many other problems, its like he develops something new every week and just keeps getting stranger and more behind??? I am confused as to what?s going on. School is trying to help, but even his teacher said he is been difficult and has so little attention he has to be sent out for most of the day. They say he's reading, but its reception stuff, and seem pleased with this - me - im worried sick, what if he's dyslexic and they are blaming the AS, because that is what is happening, every little thing is been put down to AS but all these things are signs of other things, Now im either been incredibly paranoid, or im right, I just don?t know which, so thats what brings me here to ramble. Im not even sure it makes sense, I seem to have been sat here ages trying to write down all that in a way you will understand it from my point of view. I know the label shouldn?t matter and im not trying to label him with anything else, but im so scared that he has different un associated problems (that are not common with AS) or if he?s more at the autism end of the spectrum, and loves his own world so much that as he gets older he is now shutting off this boring world around him. Please forgive the long rant. but I couldn?t sleep. (again) Thanks for reading <'> shaz PS Added later - I was mooching again and came up with the following, i thought i would add this = "Autism used to be considered a rare disorder with a population prevalence of about 0.04%, of whom 70 80% had a significant learning disability. More recently, the extended spectrum of autistic disorder gives a population prevalence of at least 0.6%, of whom 70 90% are of normal learning ability. So far, the evidence is that this shift can be explained by changing concepts and diagnostic boundaries as well as by the wider recognition of autistic-spectrum disorders rather than by any real substantial increase (Fombonne, 2003). " Now i am confused?????

Hi Annea just a few things stuck out of your 1st posting. Have you looked into whether your daughter could have dyspraxia? http://www.dyspraxiafoundation.org.uk/serv...ad_symptoms.php Also we are going through all this worry with hips and legs at the moment too, although our son is only 8. intrestingly though he does dribble his pants all the time, and has to wee every 15 mins otherwise he wets. this has been passed offf as a habit, but im not too sure. Sorry i cant be more help. shaz

hi smiley. thanks that did make sense. i totally agree with you. its just the "NO" bit that kieran cant wrap his head around. the thing is, we have a trampoline AND playhouse in our garden, we are thinking of raising our playhouse onto stilts maybe that would satisfy his need His first question this morning upon waking was "MAMMMMMmm Can i go over the road todayyyyy". I knew then that it was going to be another day of screaming fits. Thanks for the advice though. i wont ignore it. <'> Shaz

Thanks kirstie. that sounds like it needs investigating. its so annoying when you feel you are not been taken seriously. but i said years ago there was something not right, and was fobbed off so please keep fighing if you suspect there is a problem, fight for it to be recognised because i am kicking myself now thats its only just been noticed. k's mobility is everything now, but 3 Years ago when i first mentioned all this he wasnt this active - surgery wouldnt have bothered him then. take care shaz

CONGRATULATIONS.............................. So pleased everything went well. I loooooove babies. Take care. xxxx

Kieran has a new obsession..... Only its not one easily solved as I found out today. I need some input here, but how the hell do I handle this? WARNING - Ramble coming up-...... Kieran has been like a woodpecker on my brain for the last couple of weeks. Its been a mad couple of weeks as it stands, what with his hospital appointments, and the news of his legs, on top of that my hubbys mum has sadly died, and there has been so much to deal with - yet throughout all this Kieran has asked only one question. Every topic of conversation - every waking moment. (And more often than not each disturbed nights sleep) with the same question. "Can I go play over the road"... Such a simple request - yes!! But no! Thing is - the whole new obsession is about the house over the road. it has a playhouse and a trampoline in the garden, and the playhouse is on "stilts" these features have always been there for as long as we have been here and over the last 8 years 3 different families have owned the house. recently a new family moved in, and for as much as I stay out of other peoples lives I cant help noticing that there is an awful lot goes on over there and they have lots of kids (ive counted 8) so its always really busy with different kids appearing to have fun. but what the kids do is climb onto the playhouse, jump off onto the trampoline and usually bounce off the edge with blood curdling screams, followed by even deeper screams from the "daddy" of the house with raw requests to "STOP MAKING THAT {insert rude word here} NOISE !!! I have seen him strike his kids and be aggressive to his wife/girlfriend. He has a reputation as a woman beater and has 17 kids. (Not all live there).................... But... All Kieran sees is the playhouse and trampoline.. He wanted to know what it looked like in the playhouse, and wanted me to take him over for a look. I said I couldn?t because I didn?t know them, and so we set off on 2 weeks of meltdowns. Me refusing to go and ask them if he could have a look at the playhouse (on the grounds that I didn?t want to go over there) in between time, Steve has been going through a hard time because his mum died, and his family wanted us to take the kids to the funeral, we couldn?t take Kieran to the church because of his bladder problems and his hyperactive, and even the service at the graveside was disturbed with shouts of "can I go over the road when I get home"..... It all came to a head after the funeral yesterday. Steve stayed behind, but we left early as Kieran was becoming distressed, he had a proper meltdown when we got home, my mum and dad saw first hand what he can be like, especially when he locked us in the kitchen because I kept saying no to him. He kicked and screamed and shouted, because they were having fun over there and I wouldn?t let him go. He was saying things like ?I can?t think of anything else? and ?it?s eating my brain ? just let me see the playhouse?. And I thought back to June 2004, he wasn?t diagnosed then, but we were on holiday for 2 weeks the caravan site was a dump, it rained practically every day, and there was nothing to do apart from to visit the shops. On day 2 we were walking around the shops with Kieran in the pushchair when we came across a shop which sold household gadgets, and little ornaments. We went in and Kieran had his first vision of a fan. A blue electronic fan, and he wanted it. We said No, it wasn?t the sort of thing we wanted him to play with, it was dangerous. A five year old could get his fingers trapped in it and that would mean pain, so we said no and moved on. All the while with him kicking and screaming ? that was his first proper obsession. Every day after that for the next 11 days, he talked about that fan. ? We were on holiday, and no matter where we went, his new found speech talked of one thing. ?fans? on the beach (the 2 days it didn?t rain) The pool. / Pub. Diner. / Walks / amusements ? it was all the same ?can I see the fan tomorrow?, by day 13 myself Steve my mum and dad even liam and shauna, were saying ? just get him the fan !!. His communication was bad at the time, but on the very last day he said something I will never forget. ?its beautiful? and I understood him perfectly. Looking at that fan was the equivalent of me looking at a piece of art work. He saw in that fan a beauty which was just his. He loved the way the blue casing made the pale blue fan cogs looks almost transparent, and I gave in and bought him the fan. That fan brought him 6 months of pleasure until bouncy castles took over. But the fan is still also there. And every now and then he will get it out and play with it? Coming back to this dilemma. I knew he wanted to see the playhouse as he couldn?t ?visualize? it and it was basically ?doing his head in?. So he finally cracked me earlier, and when id finished splitting my 2 pots of aloe vera down (14 new plants) I took him over the road, and with a deep breath, asked the guy if he could have a look in the playhouse, he was ok about it, and told Kieran to stay for as long as he wanted (1st mistake) The other kids in the garden were all sniggering at him and mumbling, ?what?s he want????? and Kieran been completely oblivious to there nasty remarks bounced on their trampoline and had a good nosey in the playhouse. After which he was chuffed but didn?t want to come home as the mister had told him he could stay. Meanwhile one of the older children was picking up the youngest (aged about 2) and throwing him onto the trampoline, whilst others were launching themselves off the roof of the playhouse and bouncing off the sides of the trampoline. I was trying to persuade Kieran to come home, When the bloke told me I should bring him over more often ? I explained that he didn?t really want to socialize he just wanted to see his garden. I felt so awkward trying to explain to this stranger about what a problem Kieran can present. He was having none of it, saying that he?s had 17 kids and he?s never had an autistic one, one of ?em?s? got ADHD but they just let him do what he wants. ARGHHHHH? Now Kieran wants to go back over there, and im not doing it. Hes a lot happier now he knows what the playhouse looks like, but now he wants to go on the swings. ? Oh help. shaz PS. The playhouse is very unsafe the ladders are worn to the point of collapse and the floor is held togather by a few misplaced nails.. the swings are also ina very dangerous condition it looks like someone took a baseball bat to them and its just not safe !!!! . Nothing against the people for i dont really know them, i jyst know i dont want him over there !!. Babble over thanks for reading !

hi there. i thought i would update you all on kierans latest problem. We went to see the doctor on monday, and she said that he had a definate lean which she would refer us back to the hospital with. Tonight she phoned to say that she had reviewed all the info and the email sent by the orthotics and had decided to get straight in touch with his pead consultant to try and hurry things along. Shw admitted that she thought there was a definate problem with him somewhere but was unsure of what it was. it could be that his leg is growing at a slower rate than the other one, in which case they would closley monitor him over the next couple of years, or there could be tendon issues making his leg appear shorter, or the problem could be his hip. untill relevant scans and xrays have been done they cant really say.... im just hoping it doesnt come to surgery as it would kill him to loose his mobility - thats the main way he relieves his tension. not to mention all the worries he would have if he had to have surgery. Fingers crossed its something and nothing. Take care of yourselfs shaz x <'>

Thanks rainbow queen. i didnt realise that you could have a straight back with the condition. but pelvic tilt was mentioned the other day at the hospital. shaz

Hi thanks for your replies so far. The guy said that Ks back was straight when he stood upright, its just when hes stood up he has this "lean" he hasnt got a particularly unusual walk although in some ways i guess he has because of the insoles. I have managed to get him in at the docs on monday. so i will update then. thanks again shaz

Hi again everyone. I really need your advice (and / or opinion) about what happened at the hospital today. I took K to see the "insole man" (the orthotic people) to review how hes getting on with his new raised insoles. He wears them because of a history of tendonitis and flat feet Anyway i mentioned to his doctor about him getting an awful lot of cramps, especially at night and asked if the insoles were to blame. and so this lead to a quick exam of k. (who was as good as gold - bless him) after the doc has finished measuring / twisting/ pulling/ pushing / he asked kieran to stand up straight and thats when he noticed that K leans to one side when stood straight, which is what i wanted to ask you about. does anyone else have any advice at all on this? i wouldnt be to worried but he seemed pretty worried and has emailed my GP to inform him of his findings, and now i have to take K back to GP for him to investigate. I hadnt really noticed it before but when he pointed it out then it became obvious that he goes over to his left hand side when stood straight. He measured his legs and one is 5mm shorter, (which isnt too bad apparently) but the fact that he is getting Hip pain, cramps in the thigh and pain in the knees coupled with this "lean" has me worried. The guy phoned me later to say he had sent the email and i was to get in touch with GP early next week. I did ask him his concerns as by then i had thought about it, and he said not to worry but kieran had developed a "posh (something) list" (didnt catch it all) and it would be for the best to see the GP. so the question (eventually) 1) do you or a family member suffer with flat feet ankle pain leg pain cramps a "tilt" or in general any problems that ive mentioned (in red) ..... anything <'> Any advice gratefully recieved (im sorry if that all makes no sense by the way - the tiredness is getting to me) lol. take care and thanks for reading and sticking with me. shaz <'>

Hi Everyone. I thought i would pop by and say hello whilst i have the chance. its not often i get on here at the moment. Things have been very much up and down over the last few months. We are still trying to get the statement for k. as well as sorting out various other things. Kierans stimming has gone through the roof. i know i have said this before about stimming, but truth is it takes up such a huge amount of his time, in fact he seems to stim all day. and the noises are incredible. school say this term he has been very unsettled and distracting the other kids, to the point of him been removed from the class more time then he is in it. Anyway i know you all have your own problems as i have been reading the board a bit. my love and best wishes go to everyone who is struggling at the moment - i know how you feel. I hope everyone is ok apart from the problems they have. take care everyone. shaz

Lol. we have had similar episodes. once whilst shopping, k approached a woman who was rather on the large side, she was wearing a colourful pair of velvet leggings and was facinated with these. I managed to distract his attention but after a while he ran up to her and started to carress her leg, shouting "look its squishy" i explained that she was wearing his favorite material and he was refering to the feel of "something" been inside this materiel (ie- her leg) as at home he had a piece of velvet which at the time he loved to stroke. I got a filthy look (from her) and a meltdown (from him) when i had to prize him away, as by this time he was in tactile heaven stroking this womans leg. Opppsss shaz x

Hi Hun. No ive never heard of such a person over here. We have all the sight doctors but ive never heard of a Behavioural Optometrist. but after what shauna told me earlier i may have to find one of these people. shaz

Thanks Hun. i will go and have a look in a sec. Thanks cat. I have just come across this very article via wikipedia and am in the process of printing it out (17 pages) lol. To be honest i didnt know this existed so am a bit shocked at all the similarities. i will post back soon once i have read it all. shaz

Hi everyone. Can i just ask you all something. my daughter spoke tonight of the way she thinks (she is 9 and as has been diagnosed with anxiety *only* ) Anyway tonight she explained that when she thinks the thoughts are in pictures. She described some very vivedly talking about the colours of the pictures and the different colour of the letters. I told her that my thoughts come as a tiny (subconcious) voice, and she got really frustrated with me and said that she doesnt have the same, and she has always seen pictures. this (apparently) is why she cant bear her routine broken because the picture of what should be happening wont go away. it gets stuck and if she doesnt do something that is on her "picture" it makes her feel uncomfortable. She also said that if she doesnt do her (for like of a better word) "ritual" on a night the picture starts flashing and it makes her feel dizzy. Im writing this in a rush because kieran is kicking off upstairs, but i really wanted to get your view on this. do you think she is just been a kid? or should i mention it tto the psychologist when i see her? ive never heard of people seeing pictures before, but this may explain why she has such a unique way of doing things. Please let me know your thoughts, even if im over exgagerating this situation. Better go WW3 kicking off. take care shaz x

hi. actually now you come to mention it. this is what my mum said about kieran a while ago. my dad has it and she was convinced after a sleepover at "nanas" that k had it too. as he would snore heavily and then suddenly go silent. I have noticed this too and would be interested in anyone elses view on this. ??? take care shaz