Cooeeeeeeeee SCOTTISH mums - want to have a regular thread - here- as our systems seem so different? xx

[mumoftrio]

I want a place to chat to other scottish mums

and we get hardly any SALT even though she cannot speak at nearly 4.

I think that is true Fanjo - some people do seem to get reasonably good help whereas others get nothing and there is no direct way of finding out why. We got very little SALT and what we did get was worse than useless. If your dd has little speech ,she will not get SALT in any real sense of the word as the focus where it exists is on children who need only a little help to get them up to speed. Looking back, I now know ds was written off from the start but they did not say this directly.

Will post more about ABA in Scotland later

it seems so wrong, she is one who really needs it I think, she is trying very hard to speak!

ds is the same - even his harshest critics comment on his desperate attempts to express himself verbally but that's not the criteria for help in our area

it's just wrong isn't it!

postcode lottery isnt it!
i have equipment coming out of my ears but can i get Direct Payments?....no chance!

yes we were denied respite as my elderly mum and auntie look after dd for a few hours a week,while i am working!

I'm in Fife :)

Hello all.
Good idea for a Scotland thread. Am in South Lanarkshire!

mumoftrio Wed 22-Sep-10 22:54:43
shall we give a wee run down each of where we are at with our kids etc / the services involved?

good idea, then we will know who to ask what! ds has quad CP so i for instance would be no use on ASD type stuff, but if you want to know anything about cp stuff, wheelchairs, equipment etc, im your woman!

Not sure where we are with DD (3.11)...

Neurologists have drawn a blank so far, got another appointment on Friday and then a genetics appointment (although standard genetic tests were clear) on 7/10 and a tertiary referral appointment in Glasgow on 22/11.

DD has hypotonia/developmental delay/severe motor planning issues/lack of speech/ASD traits..had lots of words then regressed a year ago.

All tests and MRI scan so far clear. Phew.

She gets not enough SALT, occasional support from ASD team and full time 1:1 at nursery.

Recent DCD dx for dd age 10. Under sensory OT and doing body brushing at home and also deep pressure therapy for related sendory issues. Dd also has Melatonin but only on school nights. 4 weeks ago after multi disciplinary meeting at school dd now has an ISP and a dx (took long enough!)

Very glad to have found this thread - great idea!

Another Fifer here...

DS2 (age 3) got his ASD diagnosis last month. He has SLD, is non-verbal and 9/9 hypermobile. He just started mainstream nursery last month and has a 1:1 who is FAB! We've got the first formal multi disciplinary nursery review meeting tomorrow morning, which should be interesting!

In terms of services, we're quite lucky I think - have a great SALT who we see regularly, an OT who's in regular contact and a pre-school home visitor who gives our family general support and makes sure everything is fine with the nursery. We only requested our initial GP referral in late January so everything happened really quickly - no complaints here!

evening all

thanks for the updates, funny how areas can offer such diff services eh !!!

Nice to know there is this wee niche in scottish MN for us to share and moan as required

Location - Glasgow

DS 6 with autism. Functionally verbal. He knows lots of single words, and can get to 3 word phrases on a good day. Sleeps and eats well and is generally well behaved. He loves company and is very affectionate so lots of autism cliches demolished.

SALT 'services' pathetic to non existant
OT - very good when we got it. We certainly got a lot of useful advice and the OT was actually interested in DS which was a first !
ASD school - so so but we need to supplement with home education.

We started an ABA program in April this year and it has been very successful. I was skeptical about ABA when DS was first dxd but now I feel I might turn into a fanatic droning on about how wonderful it is !

ps I am a transplanted Fifer, I visit my parents there most weekends

willow-have you name changed.You sound like someone else I know!!

Hi I'm in Fife too, although I was born and bred in the West( Airdrie)and spent 3 years in Holland.

We have had a great service so far from Health and Education ( wee blip to start at school but sorted). Luuk has full time plus, 1-1 hours I didn't even need to fight for.His pre school education home visitor was fab so I think she was instrumental in the 1-1.

Has SALT(Fife and Sick Kids), OT and PHYSIO, Community Children's Nurse, open access to children's ward.........Goes to swiming lessons for kids with disabilities and there are a few sports clubs around too.

Sharon xx

sounds like the Fifers are getting a good service.
What is a pre school education home visitor?

Our PSEHV (or EHV for short) organised access to child development centre for Luuk wheen he was only 20 months ( we had just moved back from Holland).

She made sure that he had an educational input which was appropriate, helped me to look at and choose appropriate nursery care and then helped to find the best school for Luuk.

If I had any worries about nursery etc I could go to her and she'd help to sort the problem or would advocate on Luuk's behalf if necessary.

She was ( is say was as we lose her soon since Luuk is now at school ) Luuk's keyworker and arranged the meetings/reviews etc. Luuk is friendly with her grandson so I will get to stay in touch .

For those wondering how to get a good service I have a wee tale. When I first met Luuk's Ed Psych, he's been in the house a short time and we were chatting and he asked me, ' Are you the Bitch Mother from Hell?'. I confirmed that I am and he told me that those are the mothers who get the best service for their children so there you have it - go develop your Bitchiness!! Only kidding, but a very direct and whn I ask for things I do it on the basis that he has a right which needs to be met. ( Used to be a children's rights worker- can you tell?)

xx

you, bitchy, shaz? nah i dont believe it!

Only in the right circumstances, i.e you are supposed to be looking after my little man and don't do it right!! Then.........it's almost a HULK experience

Surprised at how many Fifers are here!

lol @ Bitch Mother from Hell!!

I'm thankful that - SO FAR at least - I haven't even had to speak firmly to anyone yet

My HV has been very involved (especially at the beginning of our referral) and did a fantastic job of chasing anyone who needed a prod (including a time when she ran into one of them in Asda, so I'm told...)

Lets rebrand ourselves.
Scottish Mums=Bitch Mothers from hell
Haha.

Hi WaitingforGodot. Yes we have emailed each other already. The name change was a vain attempt to wean myself away from MNet. Just for an occasional post supposedly....

Thought it might be helpful to share this info for those in Scotland

While doing an insane amount of Googling last week (initially looking for DCD/Dyspraxia support groups in Fife) I came across this site www.theteddybearfoundation.org/

I applied for funding for a weighted blanket on Monday and received a lovely email on Wednesday approving it :)