Hello to those with an SLD child

[donkeyderby]

I've been posting on here a while but not sure how many of you have children, like mine, with SLD but not classically ASD.

DS1 is 13 and has no diagnosis - his facial features suggest a 'syndrome' - but has quite autistic behaviours and high care needs. Mobility is poor (needs a wheelchair at times), doubly incontinent, some challenging behaviours. Otherwise, he's the life and soul of the party, very loud - he suddenly started speaking aged 7 - and loves music. He is far worse at home behaviour-wise. It has often been said that he is very Angelman-like but no diagnosis so far.

It would be good to know about your kids and swap advice on all sorts of things like toilet training, behaviour management, just why do they behave the way they do?, experience of special schools etc. etc. Should have introduced myself a bit better a long time ago but felt a bit 'flamed' on one of my postings so withdrew from anything too personal (except after wine!)

BTW It's nice to find such a busy board - there seemed to be no place to talk to other parents when DS was young.

DonkeyD, you already did contact me and if I lived where you live, i would insist that we met for coffee!
I agree I like to read about other SN, and learn from them, but sometimes I can't relate in RL, especially around the 'oh, she's so cute and is making such good progress, surely she'll catch up...' dialogue--makes me feel like I have Munchausens by proxy.

I would love to meet other parents with a daughter of any age like mine. We have always struggled to find girls with special needs as they are always really out numbered by the boys. We do go to an excellent group every other saturday set up by parents but there is a girl shortage there too!

I'd like to go to a Saturday group with my DD, where is yours and what kinds of SN does it cater for?

Vjg13, how old is your dd? I have a girl, aged nearly 7 with sld. Wahts your diagnosis? Our dx is so rare we never meet others like her.

i know exactly what you mean ds at first can pass as nt with a glance when he is sitting down ,as he looks younger than he is but within a few mins of observing him it becomes obvious or i get the awwww how old is he when I say almost 4 then you can almost hear the

My daughter is 11 and has no diagnosis, just gdd and she functions at about a 5 year old level. This is the group we go to and it is really good if any one is nearby and fancies it.

Fio, we are in the North West unfortunately!

Arabica, yes i know I contacted you! If I saw your note, I'd contact you again! Perhaps we should have a coffee anyway sometime. Love to hear how the parent power is going.

Agreed about the overload of mushy shite positive stuff you have to listen to with some parents. I don't want to wallow in negativity but I like to tell it as it is, warts and all.

Fio, I'm originally a Kentish Maid - or a Maid of Kent, i'm not sure. Now on South Coast but not so far.

Fio - I know what you mean, as (unsurprisingly since we live parallel lives) we have the same.

Agree too with Donkeyderby about the warts and all, but a bit of positivity too please or I'll go over the edge or sanity! I need a light at the end of this dark tunnel.

Kent is pretty deep, Fio.

melted, I am full of positivity, but presented as gallows humour. I find laughing at my situation - and norms reaction to ds -a vital tonic.

One parent once told me that we have to 'embrace the madness' that can be bringing up a severely disabled child. I always remember that. It helps that ds is often very funny, both funny peculiar and funny ha ha.

Has anyone seen the black balloon. It would be relevant to any learning disability really (and great if you know Makaton). A lot of the reviews describe it as harrowing etc, but we thought it was funny and laughed our way through lots of it. It was very familiar- that gallows humour that dd describes. It was written/directed by someone with a severely autistic/learning disabled brother so realistic and not cheesy.

You're on donkeyd! I fancy a trip south in the summer hols--or if you want to come to London just get in touch.

And anyone else who wants to meet in London, although people seem to be from elsewhere...

im about 50 mins from london

(I'm not far away from London but not up to travel etc yet as been unwell.) If anyone has tips on how to pace yourself and recover from illness with a sn child to care for I welcome anything! Fortunately ds has changed alot in the last year or so

Arabica, lost your email when computer died on me. Let me know - I love a trip to London. Magso, that's tough being ill along with everything else. Black Balloon - I've got to watch that asap, looks tip top

magso is your dc at school and yes i second how tough it is when your ill seems so much harder

dd, will find your email and get in touch!!

Hello again SLD mums.

I'm thinking of asking our local parent partnership group - so far almost completely useless to us as they only do what I call 'disability-lite' - to host SLD information groups. I'm thinking outside speakers on topics such as toiletting, sleep, behaviour management. Maybe once or twice a term, a couple of hours with tea and biscuits. I like the idea of parents from the two local SLD schools getting together too.

Do you think you would go to such a group? Can you think of topics of interest?
For those who have done something similar, amy tips, pitfalls etc.?

"disability-lite" - does that mean we have full-fat disability?

I think the group would be useful, if possibly a little depressing! I mean that all the people there have very severely disabled children, - that would put me off a little in a funny sort of way, even though my dd is sld, but I'm probably not typical.

However it would be very useful for info.
Topic suggestions:

Travel/holidaying with w/chairs, & tube-feeding.
Starting school
Transition from school
Accessing out-of school activities

I would go to it donkey. Would love something similar to occur here (and in fact am in the process of trying to help set up a parent group for a local respite/playscheme provider - so will be watching with interest).

For me a crowd puller would be challenging behaviours, sibling stuff (realise that wouldn't be for everyone), sleep and respite/playschemes and communication aids. Would love to get someone from the council in and talk about extended school days etc when your child has SLD's.

Great ideas for topics. I would hope this group wouldn't be depressing.

I would want to steer away from a support group and keep it to information, training and education. A cup of tea and a mingle at the end is about as chummy as I want. No-one must tell the Holland story or they will be evicted.

I don't know about you but I get almost no info or training from any source. When I look at threads, especially from ASD parents, quite a few seem incredibly well-educated, with copious literature, therapy and theory references. Where are they getting all this information from? Is it the NAS? Or just mumsnet? It has been a shock joining this forum as I realise I know so little despite ds being 13.

Many years ago I went to a Portage conference and heard a talk on communication by an academic working in the SLD field, using video footage of him working with non-verbal, aggressive young people to back up what he was saying. It was brilliant - intelligent, informative and useful. I want more of that.