Here are some suggested organisations that offer expert advice on SN.
Is this odd?(19 Posts)
I would have found that odd Riven. Is she like Edward Norton's character off the film "Fight Club" maybe?
LOL @ her trying to out-whinge you
I suppose some affected parts might not be visible- so learning difficulties plus maybe trounble with bladder control etc?
Though of course a dx for anything these days is based on how good your Paed is and if not how much you can afford to throw at it.
Does seem strange though; even the kids I know with mild CP have something about them that differs from average.
Is this odd? not necessarily. there's a lad at my DS's school with mild CP, other than him wearing a splint you wouldn't notice any problems. (reason I know he's got CP is his mum noticed my DS had SALT coming in, so we got chatting a bit). Even if the kid doesn't have obvious issues now, there must have been some earlier issues surely to get the DX?
Also if her kid had significant early developmental or motor issues even if they have largely been overcome, I think straying off the NT path can hugely affect you as a parent, I know it has massively affected me. E.g. at 3 my DS had severe language delay, at 4 moderate language delay, I suspect now at 5 he would be classed as mild language delay. I still often feel somewhat adrift from parents of NT kids though....
I would have been very at the out-whingeing though I must admit.
I think it must vary between the areas, DD2 is 2.2yr and is unable to roll over, lie to sit etc etc and we have no dx. Seems like a motor disorder to me, and would expect a CP dx but nothing.
Strange this person got a CP dx so easily for what looks like not a lot.
tbh if you see ds2 in a small room, racing around you may not notice any physical disability BUT he has a dx of CP.
But he cannot walk any distance, has poor balance, wears DAFO to maintain his range of movement & positioning, his left leg is tighter but his right weaker.
He has generalised low tone but with mild spasticity in his legs.
But after 6 yrs of daily physio morning & night stretches in the bath we are very fortunate that his gait can in short bursts appear normal.
I too ahve never felt at home & felt like a bit of a fraud at a CP group, although I have NEVER tried to out whinge someone.
I suppose in a way Riven as you could feel isolated because there are very few people trying to deal with a child as severely effected as your dd, perhaps she feels she fits in to neither the sn or the nt world.
DS2 also has ASD & learning difficulties etc so I tended to use sn groups not specifically aimed at any one group.
There is a 18 month old at my local toddler group who has a CP dx (monoplegia I think). I was really shocked when I found this out from her Mum as my dd has more obvious signs of it than her lo and has no dx! I do think some doctors are more reluctant than others to dx and want to give children longer to develop - esp when signs are quite subtle.
i am sure dd as mild cp infact my heart tells me this, but peads say no she can run , walk though runs with a high stepping wide gait, also as trouble eating lumps, talking and shes very floppy until she as a episode .
yes, I feel quite twitchy sometimes about whether the non-diagnosis of ASD was correct - as they just assessed him over about an 1 hour (when a lot of places do it over several visits), and didn't use any of the best tools like ADOS. The LEA support for SN round my way is pretty bad, so I suspect there is probably political pressure not to DX.
anon - I feel like I don't fit into the SN or the NT world. The one time I went to an ASD/social communication disorder support group, a lot of the parents were a bit funny with me, as they thought he must just have a language delay, so I didn't go back.
I just think you never know what a family is going through or has been through, so I never judge a book by its cover so to speak & its certainly not a competition.
As ds2 is getting older his other difficulties have become more of a problem than his physical difficulties, some kids just never fit in to one particular box even if they have a list of dx, sometimes for parents its hard to know the best place to go for support. TC i def feel more at home in the sn world!
Riven I think you ar eright, if you get a DR you have faith in you try to hang on to them otherwise its just more worrying.
yep I feel the same to we have dx of GDd but none seems keen want to look any further despite him having dicculties that can not be explained as a delay
Trace2 - sounds like my dd with her high stepping gait but like your doc - our paed also said not correct to diagnose cp!
I also feel like dd doesn't belong to either SN or NT group. Infact I didn't take her to hydrotherapy as was advised as I thought it would look odd as she's walking and talking. However compared to other kids her age she is 'different' and finds physical things a challenge. I can't moan as it could be a lot worse but it does make things difficult in some ways and I feel a little isolated in our position.
My 4 year old ds has a dx of autism, poss dyspraxia. He has no idea if his nappy is wet or dry, can not walk further than a metre or so, can not hold a pen, use cutlery, wears piedros, can n ot run, etc. He stands out a mile. I have often wondered, he didn't walk until 2.8, but he did walk and without the usual pattern of crawling then pulling himself up etc.
The thing is, all his problems can be explained by autism and dyspraxia dx, but am really having to fight for dyspraxia dx.
I did once know someone who had a son with mild cp, but it was noticeable.
Scottie22 thank for replying to me ! and yes when dd is with other children her age even under you can tell there is some thing not right!
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