can I ask about the word "mild" and how it affects you

[saint2shoes]

due to the dreadful murder that was in the news. I have been thinking about this a bit.
and I thought I would ask..

when you have a child that is dxed with a mild disability(say mild cp for instance) do you find you slip through the sn net, because of it being "mild"?
sorry if I sound nosey, but I don't know much about "mild" disability and am interested.

The technical description of dd's disorder is Benign Joint Hypermobility Syndrome. Which makes sense from a medical point of view, because it distinguishes it from those connective tissue disorders that can actually kill you.

But any layman (or inexperienced doctor) who sees that is going to think: 'benign? well, that's alright then, she doesn't have any real problems'.

Which is still debatable. Obviously, everything is relative. Having chronic pain is better than being dead. But it doesn't mean you're never going to need any help.

Sorry Amber, but I will forever be left with a picture of ds on a smallholding somewhere where I go and visit to collect the eggs

Cyber - we've been told the same about DS2. Not to rush in to 'fix things' if he gets upset, so that he's allowed to experience anger, sadness etc. and learn how to express them. He's definitely showing more of a range of emotion now, and very very occasionally now tells us he's 'sad' or 'angry' , but is still very passive, much more so than most NT children of his age, imo.

Nikos, !

hmmmm. this started with the whole 'mild cp' thing, which i have to say made me mad as hell in the context the way the media were portraying it. (as if a 'severe' dx would have explained murder rationally, but the woman must be evil and not a 'diminished responsibility' case bacause her daughter was only 'mildly' disabled.)
anyways, i use the term 'mild cp' to explain dd2's cp to people we haven't met before, as (after 5 years of therapy) she can now walk and talk (of a fashion) and has no lds. that doesn't mean life is a walk in the park - to get her to this point has meant 5 years of physio, OT, SLT, portage, sn nursery, ed psych, statementing, more equipment than you can physically stuff in a medium-sized semi, and 5 years of emotionally and physically draining hard work on both our parts. y'all know the score, so i won't bang on. and i know that to flippantly describe her issues as 'mild' are erasing that whole history, and presenting the assumption that life is, indeed, a walk in the park. i have to do this for two reasons - 1, i really haven't got time to sit down and run through a life history every time i meet someone new, and 2, sometimes, i'd like people to see her as a little girl who is a bit wobbly, rather than a list of dxs and a flashing 'brain damaged' caption that doesn't get her invited to birthday parties.
of course, we get the looks when she heaves herself out of the wheelchair and totters off to play, and i see mums peering curiously at her in school wondering why she needs an lsa (stage 10 ort but can't hold a pencil/ talks but can't chew so choking risk at lunch lol)
still, mild it is. but don't let any media type disparage her determination and capacity for endurance, or i shan't be responsible for my actions.

ds2 dx depends which report you read but its mild CP, ASD/OCD, GDD, learning difficulties, etc etc.
Initially it was low muscle tone & GDD, I honestly believe that it was only because ds2 met the criteria at birth (very prem) & he has always been in the system that he had the input from early on.
Even now his physio is becoming less & less often, SALT seem to ahve disappeared & since OT handed us over to school services I've not seem them either.

In many ways I wonder if this is purely the result of m/s school & if he would have better access at sn school.

Although when the pre school senco 1st assessed him she told us he was too well behaved to need any support in class.
Basically if he would of got help easier had he been disruptive.