OK my dd does not have autism or downs !!!!!!!!!!!!!!!!!! pi--ed off

[heartmummy]

my dd has a heart defect, LIFE TREATHING and she has devolpment delay as she has spent most of her little life in hospitals,having open heart ops also ngtube fed all her life only been walking this past 11 months, so does this mean she does not need as much help as other childern with learning diffculties please someone tell me!!!!!!!!!!!!!! really pissed off with other mums at my dd SALT lesson today !!! oh it was the 1st time i could leave her in the time she has been going to her lesson which has been 2 bloody yrs, and i spent 10 minutes behind the mirror talking to the other mums and was treated as if our problems didnt count as much as there lo. really peeded off

I was told by someone that my Ds1 didn't have CP, because he isn't as badly affected as her Ds

oh and im up at this time because my dd has meds at 12.30 and i do not trust myself to go to bed because im soooooooooo tried!!!!! spark all i can say is arseholes to them!!

Some people are just competitive about their kids...I think in a weird way it's the same as saying that your NT kid is brighter/better than the next person's NT kid because they can play the piano or jump through hoops or whatever it is. I remember when DD was a baby people used to tell me I had it so easy because she slept through the night whereas they were still up 3 or 4 times, as if this made them a proper mother. Now she always isn't quite NT enough for the NT kids and not quite SN enough for the SN kids. Riven is right, delay is delay, and I'm sure you're little one needs the support just as much as theirs. Let's hope that she gets what she needs out of it and that you can ignore the other parents!

I'm so sorry these mums appeared dismissive! Perhaps they felt a bit out of their depth and didn't know what to say or connect with you in such a short time. I have felt this from other parents (my son had no Dx for many years beyond developmental delay) so feel for you. Sn parents are usually supportive of one another especially as their children get a little older (as mine is now) and they relax a little! Hope next week is better!

Sorry - realise my post sounds dismissive too! What I was trying to say is that I find it helps to assume others are too worried about their own children/ stuck for words/ seeking reassurance from others in the same situation/ afraid to put their foot in it - ie that their behaviour is not intentionally dismissive. I could cope with it better myself that way!!

unless there has been some misunderstanding, sounds like you've been very unfortunate to meet such twats. there's been no "side" like that when I've done SALT group stuff.

I think (this is me in my nice hat- my other side sas ignore the bunch of feckers lol) some mums feel they fight so hard to get funds from a limited amount that they need to diss anyone elses right to support, lest it affect their childs entitlement. Then I think theres mums of kids with invisible syndromes who think everyone lse is denying teir child (probably did happen in the dx process) and have developed paranioa. I can have a tendency that way but I realise and fight it.

Its compleely the opposite that we need. We all need to join the band of famillies affected by sn and campaign together because all the services affect each other- salt is salt whether you are asd, cp or dyspraxc after all. LEA's are useless buggers whatever angle you approach it from. It's only that way anything will change- and it doesn't exist. You have to join the nas, scope, mencap, dsa, bha- all fantastic and needed, but also emphassing dx over common needs.

I am also wondering if the dismissiveness was perhaps unintentional (hard to know since you don't give examples). It may just be that they don't want to upset you by going on about how dreadful your situation is. We regularly get threads on here about how people are upset by clumsy and over-emphatic commiseration. Perhaps they didn't mean it the way they came across.

Though it does hurt. I've had it from doctors telling dd how lucky she is to be hypermobile, just like David Beckham (oh yeah, always scores from his wheelchair, doesn't he?). I think they're probably scared of their own helplessness.

so sorry there is people like this around i like the idea riven gave

i had a locum doctor that once asked me 'what makes you think dd2 has cp?'
er. the weeks in scbu with brain damage and szs, the mri scans, the physio, the OT, the SLT, and er, the paediatric consultant's dx?
bunch of numpties, the lot of them. smile sweetly and open a packet of crisps and a magazine.
it does sound like they might have been doing that embaressed looking the other way thing though - as in, oh, don't know which box that goes in so i'll ignore it...

I suppose they could have been worried about saying the wrong thing or exposing their ignorance (as in 'oh dear I didn't know a heart defect could cause speech delay what else don't I know that perhaps I should?')