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Well, as I asked I better get the ball rolling  smile

I have 4 children and the youngest has got Ehlers-Danlos Syndrome (Hypermobility type) which means he has very bendy joints that spontaneously dislocate (between 1 and 15 times a week) and he experiences quite a lot of pain as a result of his muscles working hard to keep the joints in place.  He is 2years and 5months old. 

We had a lot of hassle getting diagnosed but luckily are now under specialists down at Great Ormond Street, where we are going next in May for physio.

Children with EDS also commonly have dyspraxia, and he is showing some signs of that (his speech is extremely poor and there are food and eating issues too) so he has now been referred for a multidisciplinary with the SALT, OT, physio etc etc.

Two of my others also have suspected EDS but with minor symptoms, and my other son also has suspected dyspraxia.

Apart from that we are fine  wink

The most challenging thing I have found is that so many health professionals have treated me like a nutcase/idiot and I find it absolutely infuriating.  Also, of course, worrying about my little baby and his long term health etc is very upsetting and tiring.

I am interested to hear others stories to see who else is out there charting their own SN course!

Becky
xx

Mummy to four little ones

Becky,

I know a woman from another forum that has hypermobility, and she is the most talented woman I know.  She is very much into allotments, and can create the most fantastic things from willow and hazel.    She does have tough times, but also she does not let it get her down.  An inspiration to anyone going through difficult times.

Yes, the doc we saw who diagnosed Sam said there was no point dwelling on the worse case scenario because we have no idea how his condition will pan out.  He could be in a wheelchair and constant pain, but then he might not.  Its a bit easier said than done, I have to say  :-\

Mind you, it was better than the GP who said (in passing) "well, it can be fatal" !!  Luckily I already knew he didn't have that particular type of it but I was…. hmmm shall we say 'cross'  >:(

Becky
xx

P.S. Is it just me with a child with special needs then?  I find that incredible!

Mummy to four little ones

No I do too, but just popped on for a second…. will post later!

I have a child who, whilst he does not have special needs, seems to have more hurdles than most to overcome.  He started school without being able to make himself understood due to glue ear, which wasn't severe enough for them to put grommits in, so he just had to put up with, which therefore affected his speech, but they wouldn't give him speech therapy (initially) as they said there was no point as he couldn't hear properly!  ::)

He has had "problems" with his testicles (hopefully all resolved now), difficulties with toilet training (age 6 and not mastered it yet) so we are going back to the dr's about this. 

Basically since his birth he has been "under" a consultant for one thing or another.  Fortunately he has such a fantastic attitude to life, and does not let things bother him.

I know these are all little things and nothing serious, but I do feel I have had a glimpse of what other children with special needs experience.

Not sure if I am posting on here under false pretences as my DD has no diagnosis, nor does she need one really but she has certain 'challenges' shall we say with explosive behaviour and inflexibility - not autism spectrum or anything that serious but incredibly highly sensitive and it's hard work to try to maintain an enviroment and schedule for her that is enough to engage and stretch her but not too much so that she melts down.
Like I said, no diagnosis or label and something she will learn to deal with in time (I hope) but still a very real special need for now which has proved immensely challenging for us as a family, and we have gradually realised is definitely out of the ordinary.

Liz grin x

Druid, boat-dwelling, home educating mum of DD1 (11), Aspie DS (9) and baby DD2 (2), & part-time step-mum to 2 stepdaughters, 9 and 7.

Phew!  It's not just me  smile

Yes, I appreciate some of those special needs.  I have a 7 yo son who still has accidents in the day sometimes, and is on the cusp of being dry at night (fingers crossed) though he hasn't gone longer than 3 nights without wetting. 

He also has a melt down characteristic where he can suddenly 'glaze over' and just go crazy (only way I can describe it) which has been really difficult to handle.  As he's getting a bit older now other things are coming to light to do with handwriting and social skills.  We are not sure if it might be dyspraxia, but I kind of think there might not be a lot of point getting a label as I'm sure it will work out ok given time and patience.  Too much emphasis on doing things at a certain time, for my liking.

Becky
x

Mummy to four little ones

Ds has a diagnosis of moderate autism and severe adhd, with a suspected diagnosis of dyspraxia. I hate “labels” however….Ds is just a colourful little boy, no more complex than any other in my eyes smile

Crunchy hippy vegan mama to four gorgeous boys. Formerly known as bettywobble smile

Blogging again at http://lilpidgesblogspot.blogspot.co.uk/

The bosom of the Mother is the natural pillow of her offspring.

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