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Here are some suggested organisations that offer expert advice on special needs.

Original poster

Hello to those with an SLD child

137 replies

donkeyderby · 12/05/2009 13:53

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.

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FioFio · 14/05/2009 09:35

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Original poster
donkeyderby · 14/05/2009 09:52

Fio, of course you should set up an SLD group!!! If you have got the strength, time and energy, there is obviously a pressing need for one from what we are all saying here. Having a specially adapted centre is a brilliant start. Could you set up a meeting for interested parents so you are not doing it on your own?

Our kids must be at the same school! SN schools get very inward-looking and institutional because they get used to not having to deal with parents on a daily basis. We take ds in and they took ages to get used to having to speak to us. They looked frightened! Not that ours is a bad school, they just don't understand the whole family picture. Various parents have been trying to get them to open up the hydrotherapy pool after school for families with disabled children but with no success. I found out the other day that it is open for staff and their families once a week!!! It beggars belief.

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FioFio · 14/05/2009 09:58

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Original poster
donkeyderby · 14/05/2009 11:46

We went to the CDC Opportunties group when ds was tiny, but he was by far the most disabled. The whole thing was dominated by a pushy, anxious woman whose ds had mild CP, resulting in a limp. That was it, no other problems. I wanted to punch her! I whole experience left me feeling even more isolated.

TBH, the most prejudice I have met is from parents with SN kids on the mild end of the disability food chain. They can be - understandably - unwilling to mix with SLD parents because they do not necessarily want to identify with disability. They want their kids to be very much part of the mainstream. I'd love to feel more part of mainstream life, but mainstream life doesn't usually understand or cater for us.

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saintlydamemrsturnip · 14/05/2009 12:32

I'm not sure what others will think of this suggestion, but I've suggested our own area in the new look MN special needs on this thread:

saintlydamemrsturnip · 14/05/2009 12:34

Agree donkey about the difficulties mixing mild and severe disability. Although I always get told off for saying that as people seem to think I'm being competitive. I'm not, just commenting that difficulties, needs, wishes and future desires are all different.

saintlydamemrsturnip · 14/05/2009 12:39

oh (and we really do need a separate area as this is a total topic jump) but we had ds1's 10th birthday party last night at the Elisabeth Svendsen Trust.

They are the SN section of the donkey sanctuary. It was absolutely brilliant. We had the whole centre to ourselves for 2 hours. The staff were lovely. It was safe, free use of the sensory room and all the kids had a donkey ride and carriage ride. And because all the kids go with their schools they were completely relaxed about being in the centre too.

I haven't done a party for ds1 for years because-well it's just too hard as I'm sure many will know- the last few years we've hired limos to drive around in as a family- but I would really really recommend the EST centres if you have one locally. It was brilliant and ds1 loved it. When I booked they apologised that parties were the one thing they charged for- I waited expecting the price to be hideous- £50! AND they gave ds1 a present (a donkey of course).

FioFio · 14/05/2009 13:37

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meltedmarsbars · 14/05/2009 13:50

Donkeyderby - that hydro pool thing is outrageous !!! At my dd2's sn school (a new build) I asked the Headteacher if we could borrow the pool for a family swim because we can't go all together to a public pool. He said yes, we had it for an hour one day after school with all 3 of our kids, IT WAS GREAT!

Mrs turnip - I'd prefer to mix with both mild and severe sn on the message board because I learn from both even though my dd2 is severe. Just a thought. Also, it educates all those in the disability food chain as Donkeyderby put it.

magso · 14/05/2009 13:59

That donkey party sounds wonderful Mrs T. Glad it went well. I can see a holiday idea coming on- visit family and donkeys! All ds friends seem to use the same party idea here - a local soft play which has a sn only session once a month although its a rather challenging enviroment for some children.

meltedmarsbars · 14/05/2009 14:20

Soft paly areas are no good for some kids - mine can't get in - she can't stand or crawl or walk. And she runs down toddlers with her silent but deadly motorised w/ch.

vjg13 · 14/05/2009 15:31

Mrs Turnip, my daughter is on the EST website!! We used to go a lot but now she is 11 she's a bit too big and we moved on to RDA. It gave her a fantastic introduction to riding. I didn't know they did parties, sounds fantastic.

saintlydamemrsturnip · 14/05/2009 15:34

meltedmarsbars there'll still be a regular SN chat section as well. As I understand it anyway.

SJisontheway · 14/05/2009 17:55

Party sounded great Mrsturnip.
It certainly can be very isolating in our world. I went to a talk a few weeks back on PCP (person centered planning?) and given dds level of disability it just didn't seem very relevant. I'd be delighted if she could let me know when she's thirsty, not to mind communicating hopes and dreams for the future. I'm very doubtful her communication will ever reach that level. It's just a bit depressing when you go to talks/activities tailored for SN and you still feel left out.

saintlydamemrsturnip · 14/05/2009 18:34

Oh much sympathy SJ- there is nothing more isolating that going to a special needs event and finding out your child is leagues away from the others in terms of disability. It's why the local ASD support group doesn't really work for me, 99% of the people who go have children with AS- and why I prefer to go to school events (not that I've made it to many of those recently).

Arabica · 14/05/2009 20:13

Hi everyone. Am also trying to meet with parents in my area, and have actually got involved on the campaigning side as a deliberate choice in that I did not want to be the one setting up a support group (because I would rather go to one as a regular member and not have to do all the organisation). Have definitely found that parents of children on the autistic spectrum make up the majority of those who 'get involved'. Was thinking of placing a lonely hearts add on the wall of the child development centre: sometimes isolated mum of child, nearly 3, with GDD/LD, seeks similar for good coffee, park and mutual confidence-boosting!

meltedmarsbars · 14/05/2009 20:17

I go to a "support group" that is a loose bundle of friends who meet sometimes together for a meal, sometimes in ones or twos. It span out from an sn toddler group that I never went to! I go because I was invited by a member of the toddler group.

It does help to swap stories, news, advice, and to know that you're not the only barmy one!

Arabica · 14/05/2009 21:02

Yes that's what I want, to know am not the only barmy one (suspect I might discover that actually, am indeed still the barmy one!)

monstermansmum · 14/05/2009 21:02

Mrs T, we did a party at EST a couple of years and it was fantastic-highly recommended!! The donkey riding & therapy gave DS a huge boost physiaclly and started walking shortly after starting-wouldnt say its a miracle cure but there was def an improvement.

What RL friends?

magso · 14/05/2009 21:24

Oh er I was thinking that too! ( What rl friends?)

Phoenix4725 · 15/05/2009 04:22

Arabica know what youmean some and not saying you lot do, seem totake the GDd label lightly thats what found when gone to sn groups,that theres a feeling well he will catch up erm I know he wont does not cut it there

there does seem to be a feeling that we got of lightly at sn groups bit of hiericahy Sp?,

even though ds only functions at 18months and verbally nothing so to me we not got of reallylightly

Original poster
donkeyderby · 15/05/2009 09:38

I'm not sure I would want the board to change and have subsections. I like reading lots of threads that don't always relate to DS. Parents of ASD kids seem so much better educated than I ever have been, presumably because there is now so much more info at their finger tips - the terminology used on here makes my head spin! I like to learn from them.

DS has 'GDD'. Seems in his case it's a catch-all term for 'we-don't-have-a-fucking-clue-what's-wrong-with-him'. And, no, he never caught up.

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Original poster
donkeyderby · 15/05/2009 09:40

BTW, Arabica - lonely hearts board for parents...I love that idea! If I saw one, I'd contact you!

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Phoenix4725 · 15/05/2009 09:41

i dipin and out all threads as never know whn something causes a lightbulb moment and as a lot ofyou have older dc you already been through it soi can learn ,

same here donkeryderby mind they never looked either

TinySocks · 15/05/2009 09:45

arabica, I like the sound of your adv. Might steal your idea.