Flora
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Posts posted by Flora
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I made the above suggestion as a sort of joke, but to be honest I'm so desperate I think I would actually do it!
Lauren
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I've been doing my fair share of firing off letters and emails recently. I've recently sent a letter to the head of a private school who turned down my AS son and copied it to lots of MP's including the PM and various other people. I'm also trying to get the Tribunal to exercise their discretion and allow us to make a discrimination claim later than the cut off time allows.
I'd be more than willing to get involved in any united efforts to bring the plight of our children and the lack of provision in line with what it should be. There is virtually no help on offer and the help available takes months/years to 'fight' for and this is an absolute disgrace. Not to mention the constant discrimination (which is supposed to be illegal) going on under our very noses.
I'm sure I've got a tinkerbell costume somewhere I could squeeze in to
maybe we'll be listened to if we all dress up and go and swing from London Bridge or similar! 
Lauren
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Oh forgot to add; he doesn't exactly cut his clothes up (poor you!!) however he does chew the cuffs until they are unwearable and also puts his whole body inside his tops so that they end up like shapeless tents!
Lauren
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I have the tag problem with my AS son. He also refused to wear jeans as they are just unbearable for him. He'll only wear soft clothes with the tags off and no restrictive buttons or zips. I've also had fleece tops that go bobbly inside and he won't wear them either, or wool. Nor will he wear anything that just fits, all his clothes have to be baggy!
Lauren
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Smiley. You mentioned the frontal lobe and it's link to Aspergers syndrome. When my 11 yo AS son was 9 weeks old he had an MRI brain scan to find out why he was having seizures.
What they found was that he had an above normal amount of fluid over the frontal lobe area which wasn't enough to cause problems. However, the neurologist pointed out that there was a link to fluid on the frontal lobe and high brow academics etc (it's no cooincidence they refer to them as 'high brow'!!).
We had no way of knowing then that our son had Aspergers syndrome (in fact it was in 1994 when AS wasn't used so much as a diagnosis), he wasn't actually diagnosed until 2002. However, like you I've since discovered that research suggests a link between the frontal lobe and the development of Aspergers syndrome.
Bristol university did some recent research on adults. They have promised to get in touch with me if they decide to repeat the research on younger people. I'll keep you posted. And good luck with trying out cranial osteopathy.
Lauren
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A few years ago I took my youngest child for cranial osteopathy to help cure his glue ear. However, we did see a vast improvement in his reading and general development. I couldn't afford to keep it up or I would have more done. However, I agree, it's certainly worth giving it a try.
lauren
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I voted no as both my ASD boy's are in mainstream and receiving no special help at all because they are classed as satisfactory, even though my youngest son is 'working towards level 2' in his end of year 3 SATs. How can that be satisfactory? Also my eldest son is going to repeat year 6 because he is not mature enough to go up to seniors in September. Does that sound satisfactory to anyone here?
I'm absolutely fed up with teachers etc telling me that my boy's are 'fine'. They have no idea how demoralising this is for a parent of children with ASD dx's. I am giving them another year to come up with something better or I'm going to opt out of the school system completely and educate them myself at home. I'm not a teacher but at least I haven't got my head buried in the sand which is what the teachers (and politicians) are doing and seem to want us (the parents) to do.
It's easy for a teacher in a primary to school to say 'satisfactory'. After all, they won't be the one's picking up the pieces for years to come.
Lauren
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Just after my son's diagnosis of Aspergers Syndrome and Dyspraxia (my other son at this time hadn't had his dx of language delay and autistic tendencies) I applied on my son's behalf for DLA. I was turned down and didn't bother to appeal (partly because I was in the process of relocating and had other things to cope with).
A couple of years down the line and I am thinking of reapplying.
I think my main problem is that I'm so used to coping that I do cope but it would be easier with some assistance. So when I was filling out the forms I probably based it on years of coping so didn't record all the problems and difficulties we live with. (hope this makes sense!!)
I was wondering if their are others out there who are so used to 'getting by and coping' that they forget/don't have time to seek the help they need?
Also, as a divorced Mother of 3 children, two of which are ASD it's almost impossible for me to even find part time work (I did work part time last year and the effect on my boy's was that they were both constantly distressed by the disruption to the routine).
What I'm trying to find out is if there is anyone who has managed to get over the dilemma of deciding what is a serious problem and what isn't, especially when you've 'coped' for years and years, filled in the forms and been awarded DLA successfully? Is it just a case of working hard to get your point accross? We're not house bound and my son is in main stream education; but his disability restricts all of our lives in a way that is very difficult to illustrate in the forms they send out.
Any advice re this garbled message would be greatly appreciated!
Lauren
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Elaine
It's not that loud. We were really puzzled to what noise was actually bothering my son. My other son who has AS wasn't bothered at all and thoroughly enjoyed the whole experience.
I can only assume that it was one of those noises heard by ASD kids that other people don't notice. They are impossible to predict so you can't really avoid them!
Lauren
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Hi barefoot,
I have a homeshooling website with loads of links leading to information on home education.
We were all set up to start home educating our AS son in September. However, we have recently agreed to allow our son to repeat his last year of junior school which gives us a year to either find an appropriate school or to again decide to home educate.
The link to my website is below, if you go to the links page you will find links to a few websites which will provide you with loads of home educating advice and info.
Good luck
Lauren
www.homeschooled.co.uk
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I have 3 children. My two youngest (both boys) are both ASD. One has AS and dyspraxia, the other has language delay and autistic tendencies. I've just registered for the gene testing research project as I think this is too much of a cooincidence to be overlooked.
My daughter who is so far typical development has recently got me wondering. She has always been a bit of a day dreamer but this seems to be more apparent and more problematic now she's 13 years old. I'm keeping a close eye on this to see if it's just me being suspicious or if it is indeed indicative of a so far 'hidden' dx.
Oh happy days!
Lauren
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I took my kids to Disney Paris a couple of years ago. One of my two ASD children is very sound sensitive and walked around for the whole 4 days with his fingers in his ears and had several fainting fits (he used to faint when stressed). So much for giving your kids the time of their life!!
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Hi, to all those whose children don't like the taste of eye q or find the capsules too large to swallow.
I can't recommend highly enough the morepa mini. They come in a very small capsule which is very easy for a child to swallow. They can be opened up and the liquid (strawberry flavoured) put in drinks or yoghurts. But I'd say the capsules are small enough for this not to be necessary. Also, they only need to take two a day as the concentration of omega 3's are very high in each capsule.
Also, it takes about 3 months for them to reach full affect, so it's important to remain patient while waiting for improvements.
There is an autism treatment evaluation check list you can fill in prior to intervention and afterwards to guage improvement (sometimes the change is too gradual for us to be fully aware).
http://www.healing-arts.org/children/ATEC.htm (autism treatment evaluation check list)
Lauren
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My 11 year old AS son sits down! I even recently asked him why and he says he just prefers it that way. I thought to myself, who am I to argue? If it works for him then that's ok.
Lauren
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I haven't read all these posts; but as I was reading some of them they stirred a particularly frustrating and heart rending memory.
My youngest child was diagnosed 3 years ago with pragmatic language delay/disorder.
Shortly after the dx we relocated and the first thing I did was ask for a SALT referral for my son.
14 months later (14 months of NO therapy what so ever) the SALT saw my son at his school and delivered the gut wrenching verdict 'Not in need of therapy'.
I had prior to our relocation spent three and a half years getting my son diagnosed only to be told by a stranger who spent half an hour with him that he was not in need of SALT. How can that be with a dx of pragamatic language disorder??
18 months later after having spent a couple of thousand pounds on vision and sound therapy my son's language problems have all but gone.
However, I feel very angry and let down by the NHS system that I had to spend this money at all, to sort out a serious problem which had been diagnosed by several child psychiatrists and a battery of very expensive neurological tests, only to be told by a different health authority that he didn't need any help?
Senseless to say the least, and hardly surprising the NHS is in chaos.
I think as parents and advocates to our special children we have every right and justification to criticise professionals who are letting our children down by just a slip of semantics.
Rant over!
Lauren
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My youngest son who has language delay and autistic tendencies used to have amazing tempter tantrums where we literally couldn't do anything with him.
I decided to try cutting out some things one at a time to gauge the results. The first thing I tried was drinks with additives. All he ever drinks now is water or cranberry juice (the ocean spray one is additive free). Within a couple of days he was calmer, less hyperactive and the temper outbursts are only apparent when there is a logical reason for them (before this he would just have one for no apparent reason).
I'm convinced cutting out these sugary additive laden drinks has improved the health of all 3 of my children.
Lauren
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Slight variation on the same theme.
When my son heard me say 'I'm on a diet'... he asked me what it means... and I explained that I was eating less of fattening foods in order to lose weight.
Years later he read an ariticle that explained that fizzy drinks are bad for you. He decided then that he would give them up and goes around telling people he's on 'a fizzy drinks diet'... naturally most people assume that he drinks them as part of his diet!
He can give a very good argument that being on a 'fizzy drinks diet' means that he doesn't drink them at all. I can't really argue with that as it does make literal sense!!
Lauren
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I have an 11 year old son with Aspergers Syndrome. He was diagnosed just before his 9th birthday and shortly afterwards I explained it all to him. He was so relieved to know of his diagnosis because he'd always felt different and had lost all his confidence because he thought his 'difference' meant he was stupid.
A couple of years ago I went on a conference about ASD, and there was a speaker there who was retired! He'd only been diagnosed the year of his retirement and said that he was so relieve at getting the diagnosis as it helped him to cope with his retirement, and was the missing piece of a jigsaw when he looked back on his whole life. He was prompted to seek diagnosis when he began to have panic attacks leading up to the life changes that his retirement would make. He was however in the fortunat posisiton of working in a university which had a autism reserch unit... so he merely went to talk to some of his colleagues; thus seeking his diagnosis that way.
I'm telling you this story to show that most undiagnosed adults with AS are often tremendously relieved by discovering their AS rather than being disturbed by it.
Good luck.
Lauren
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Hi Smiley. I've had my son on omega 3 supplements since February and the change in him is so remarkable I have also started my other children on them. He isn't taking eye q, he is taking morepa mini which is for children age from 5 onwards and is a small enough capsule for a child to swallow easily (or you can open up the capsules and put the strawberry liquid in to yoghurts etc).
So yes, I'd highly recommend you start your son on eye q or similar. You have to give it 3 months before it takes fully effect.
Eye q is one that most people use because it is readily available in most chemists. Morepa is not so readily available and I buy it online (though it comes within 48 hours). I'd be happy to supply the link if you are interested (I'm not commercially involved... just very happily using it for my kids!).
Lauren
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I first read about Aspergers Syndrome when my son was 6 years old... (he's 11 now), even though it was just a brief outline of the signs of AS I was sure it was what my son had. However, having had previous negative reactions from GP's and paediatricians I didn't do anything about it.
A couple of months before he turned 9 he started having real trouble meeting the ever expanding expectations at school and he became suicidal (threatening to stab himself), this lead to a very swift referral to ed psych followed be equally swift referral to a child and family psychiatric unit. It was confirmed that he had Aspergers Syndrome and dyspraxia. I had my youngest son referred at the same time and after a host of neurological assessments he was diagnosed with pragmatic and conceputual language delay and autistic tendencies.
When I read of some of the problems people are having getting a diagnosis for their child I realise how lucky we've been that once the process was started our diagnosis were very swift.
However, having moved area since then I have come accross many brick walls regarding the help available. Last year when the child psychologist said she was taking my AS son of her files as he didn't need to be on them, I referred them to some news stories which were around at the time, highlighting how badly things can go for these children when they and their families don't get the support they need.
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I thought my first son had AS when he was 5 but I'd previously been made to feel stupid when I had sought help from paediatricians so I said and did nothing, but all the while quietly wondering if that is what he had. It wasn't until he was nearly 9 and his class teacher suggested the same thing that I finally had the confidence to have him assessed by an ed psych who then confirmed my suspicians.
My second son was assessed at the same time, same result! Though he doesn't have Aspergers he's def ASD.
Several years on and I feel as if I know more than most of the 'professionals' my son's have been seen by.
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Well I guess someone has to be different.... I'm actually delighted and breathing a huge sigh of relief now that it's the holidays!!! Why???
Because it's so stressfull getting my 11 year old up, ready, fed and out the door in time for school! It's a daily case of pitting my wits against his.
I have 3 kids, two of which are ASD, and I've found that all of them are so much more relaxed and willing to do something different when they are not at school.
I will avoid having them with me when I do food shopping though, they gang up on me and I invariably end up doubling the food bill!
Happy holidays folks !
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First of all.... it's only a problem if you decide (or let other people decide) it's a problem (wise words someone said to me years back).
My son is 8 and he still doesn't dress himself. He is capable, he just won't, which is just as bad really! But at 6, he not only wouldn't, he couldn't.... so please don't worry, your son is still very young.
(just to make you feel better, my 8 year old still won't go to the toilet by himself - he has a fear of toilets and rooms with doors that lock). I just go with him, it's easier.
As for the swimming, could you go along to the pool to help him dress afterwards? Many schools are delighted to get help from parents during swimming lessons, and you could help a couple of other kids too (believe me they'll need it!) so your son doesn't feel singled out.
One thing I've learned with the experience of caring for my two ASD boys is that you've got to pick your fights carefully. Some things are just not worth making an issue of and I think the dressing thing is something that invariably sorts itself out. My 11 year old had problems dressing himself (He's AS and dyspraxic) but now he showers, dressess and would be appalled if I was present when he's doing it! But when he was 6 I would never have believed he would do it, he hated clothes and would remove them as fast as I could get them on him. So don't despair.
Lauren
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Amazing... if only in the cooincidence stakes!
Seems many of us are not only experiencing the same things, but often at exactly the same time!!
It was my son's sports day yesterday. He's the tallest in the class.... but.... he came last in the skipping race which was sooo humiliating for him.
I don't only share your outrage at your teachers attitude.... I'm living it here too!
Keep up the good fight
!!!Lauren
Phenergan
in Medication
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Used phenergan for my son about 9 years ago when he had chicken pox. Gave him it at about 11pm as he was too uncomfortable to sleep; the result..... he turned the house upside down and didn't go to sleep until 9.30am the next morning (he fell asleep in the car when I drove my daughter to school).
Lauren