Arabica - didnt want to hyjack, CHAT/UPDATE

[misscutandstick]

Hey there!

where you been hiding?

DS5 is still non-verbal (but not non-vocal!) and babbles using a 'Guh/Gah' sound. (WARNING PMM!) But im very proud as he can use approx 80 makaton signs - vast majority nouns, with a couple of other toddler faves("where", "fell/dropped", "stuck" and "broken"). He does have verbal dyspraxia, but im hopeful for the future.

Hes still unsteady on his feet, but doesnt fall over as much as he used to. His gross and fine motor skills are still quite delayed (cant jump yet, and doesnt use a pincer grip for example). He isnt toilet trained yet.

An MRI showed a bit of scarring, so he has minor brain injury caused by oxygen starvation at around 28wks gestation (probably a kink/knot in his cord or something similar). Still not Dx with anything firm, but still likely to be autism. I think he has ADHD in thrown in there for good measure too .

Still fighing all the way with statementing, but getting precisely nowhere (currently appealing for assessment), we live in Nottinhamshire, so its only to be expected.

So, how goes it with you? any Dx or thoughts towards it? Hows her mobility going? Hows the signing/speech coming on? Am i right in thinking that she also had an MRI? Sorry for asking so many questions . I only ask because i remember that in many respects our children seemed very similar that while ago, and wondered if they were still on the same path.

xKx

[donkeyderby]

Can i hijack this too?

Arabica, how is the parent-carer forum going? Interested to see how other parents are finding the process? I think we emailed each other about this a while back.

I'm only involved at arms length in ours: I don't feel very confident that it has much clout unfortunately. One of the problems is that there is little email communication between the steering group and the members so you don't know what is going on much of the time. I would love to be more active, but can't do the steering committee.

I hope yours is going well!

[saggarmakersbottomknocker]

Hello, long time no see

[Arabica]

Hi! Ms C&S, DonkeyD and Saggars. How nice to see a thread with my name on it. I suppose I haven't been on here as much as I used to beI think it's cos DD has started at fantastic inclusive nursery and there are now 4hrs every weekday when I am totally reassured she is in an ideal environment and is making real progressverbally labelling the objects around her, confidently interracting with the other children, and doing new things every day.
She doesn't do any makaton signs because I think she finds them hard to do (her fine motor skills aren't good) but she is speaking--mummy, daddy, dink, chocklit, peetza (we're such healthy eaters)She can't tell us whether she is hungry or why she spent the entire journey home from the seaside screaming though!

DD, we have been lobbying madly for more parent involvment locally and secured parent places on our short breaks procurement committee, parent partnership steering committee, autism steering group and have been helping the child development centre with pathways to diagnosis. Its mainly about four of us though. We do try and recruit more parents but tbh a lot of them just aren't up to speed with dealing with anything more than their own kids' situation. We are going to arrange some training so maybe that'll help. I'm a bit bored with it at the moment--I like the clinical side of things! I also can't afford to do voluntary work.

Saggars, how are you--it's been ages: I used to talk to you on the running board! have just started again after about 3yrs off. Am 4st heavier than I used to be and was going to wait until I was slimmer, but figured no harm in starting v small.

[saggarmakersbottomknocker]

Hello - yes, hmm, running . No - I'm joking really, I am still at it but don't seem to be able to oush out of my comfort zone at the moment. Good that you've got back to it - helps with the stress I find and as dd is now 16 and making the transition to adult services I have a lot of it

lol @ peetza - you do what you have to do IMO. She sounds fab though and coming on well . Lovely to see you.

[devientenigma]

Sorry to hijack but Arabica it sounds like the steering group is working wonders. We are onto our 4th conference!
I was also thinking about making a facebook group for steering group members all over the uk, so we can bounce ideas around, work out other issues together etc...what do you think??? would you and your group be up for it?? I am already invloved with someone from the stockton group but as a friend on FB. I am also able to contact someone from Durham and they could pass word around.
Take care x

[Arabica]

Hi Devient. Please let me know about your facebook page! Am on bergmann dot grainger at btinternet dot com