am getting more confused as dd gets older

[trace2]

shes now 19m we feel like we missed all her baby days as was always in hospital now we feel like we stuck in a time machine ben here for ever!

anyway as most know chloes been in and out of hospital since birth with the episodes she as we have some dx then taken away a few times anyway again i think chloes doing v well considering how much time in hospital but they now say shes behind with her speech, i though they was just beening carfull with her being under lots of peads, we are starting mackaton in feb (i think 19m is to early to tell). i get family saying our /// never talked by that age, our /// never put any weight on our // never walked by that age.
so getting realy confused i did ask salt last week how i feel she says chloes got a under develped tongue and as muscular isues at the moment this is what chloes got(
chloe as sezuire type episodes,GGD,aponea attacks,hyptonia, hypermobile, BPT, feeding isuses, fundo, gastrostomy and drop attacks.

why dont they just say they have no idea and i feel like saying we dont need your help and get on with our lifes but i know i carnt as we need them.

sorry just getting this out of my head by writing it down. no need to reply

yes chloe has been through a lot. with SALT - it's not like the other stuff - in that it's no t going to be remotely invasive or unpleasant for her - and it's far better for a child to have SALT and it prove to be unnecessary, than for a child to end up falling through the cracks in the system and not ending up getting help till they are 4. I presume the SALT is keen to get the makaton going as she expects chloe to find it hard to get the mouth movements for speech - the hand movements are easier for kids. The makaton will be very good for supporting chloe's speech and understanding of speech - it works alongside speech iyswim, you always say the words as well as sign it.

as usual tc you always make sence of it all thanks i am doing bits of signing now picking it up easy compared to dh(only bits mind) even chloe signed more drink other day so yes its helping us understand her.

its me i know just so fed up not knowing whats up with her. we have genetics coming out on 20th this month

oh phew, thought my post was a bit useless as I only really have experience of the speech stuff, not all the other problems you've been through. I hope genetics are helpful, have you seen them before?

do you watch something special on cbeebies, that's very good for makaton.

'feel like saying we dont need your help and get on with our lifes but i know i carnt '

I remember saying very much the same with relation to ds3's dx (like your dd he was dx'd a few times then they changed their minds) just before he got one... then we sctually got a dx and I realised how much it did matter to me emotionally but over and above that i'm not so sure what difference it makes in all truth. The only things that may change are that we can now get help with the NAS lady..... er yes she who was supposed to phone us Thursday so i waited ina ll day wanting answers to several questions that she'd promised; SS need to do another (after ds1) DX asessment- except lately the local ones don't even annouce they're coming so I've had to keep the house spotless even after one night of 45 minutes sleep (in truth ill baby not ds1 /3).... LEA will look at it but nt until APed writes the letter which we've chased but nt had....

That's the thing: when you get that dx sod all changes, you just end up chasing for something else instead; you have a wobble 9can be a marked one, was a year with ds1) about the dx, then brief optimism that now you'll get extra help and.....

yes well!

Bas is starting abby signing soon; is there anything like that you could take Chole to? A bit of a chance to socialise? The class I found on the internet seems very welcoming

The speech and gesticulation (hand movement) areas of the brain are right next to each other, because of this Makaton can encourage speech so it's never too early to begin using sign.

tc it was not usless it helped made me see sense ! and no never seen them befor it a nurse counsiler befor we see the pead genetic.

Clarissimo yes i understand what you are saying to i think we been chasing so long now if or when we dont need to i will feel at a loss sort off but i am at your ss turning up when ever! ours ss ring first but can i had i was told if my house is in order i didnt need ss ( what a lot of bull) like you said even after only 45 min sleep i feel i need to clean too.

and yes we starting baby signing as well as mackaton soon just waiting for a place, she loves music, but i am worried about taking chloe as they can see or we can see the diffrence to a chlid same age as her she looks and does what a child at 9m

only looks older in the face

I can email some Makaton signs if it helps

I can understand that trace, I cried at the nativity watching all the bright sparks and then ds3 looking distracted with 2 helpers.

luckily ds4 got noisy so I had an excuse to vanish.

I am considering not teling the mums at sign language about te asd, I feel like I am being disloyal to the boys and I know its an automatic barrier to friendships to omit truths but I just want 2 hours a week where i'm with the NT world if that makes sense? I know the odds of ds4 being asd but would like to pretend I don't!

It's also not coincidental that I chose a group 10 miles away where there is no chance of ds's being 'known' iyswim

smudgethepuppydog yes please my addy is

tracypearson 6 at hot mail dot com

Clarissimo yes i know what you mean my family are just as bad though i keep saying i want some kind of normalaty even more with ds and AS we knew he was diffrent but we just got on with it until he started school thats when we and other saw and even now the gaps getting bigger from his pears, but thers no one round here with sn i know

Sorry Trace, the bloody scanner's not working (ew PC which doesn't seem to be recognising my old scanner though it is picking up the printer part). I am more than happy to post them to you though, I have a Level 1 and 2 booklet that I don't need because we have all the manuals at work. I'll email you for your address if you're happy to do that?

Have you looked on the Makaton site? www.makaton.org

hi smudgethepuppydog yes thank you that would be good