Sod inclusion: I want to live in a gated village

[BakeliteBelle]

I actually believe in inclusion, really, but when you have a dc whose disabilities are so severe including challenging behaviour, trying to fit in to the mainstream world is just so exhausting, demoralising and thankless. I just want to close the world on the rest of the world sometimes and live in peace with my friends and their equally challenging SN kids.

No more constant stares and gawping from the horrified public

No more constant danger for the escape artists

No more having to put a positive face on every morning before leaving the house - you know the one that says, 'I know my son is lashing out and touching women's breasts, dribbling and spitting and carrying on but it's perfectly ok and I am perfectly calm. Yes, really I am.'

No more buildings/outside spaces that aren't designed with severe autism in mind

No more having to constantly look at normal families, having fun doing normal things

No more listening to hardline inclusionists saying, 'inclusion can happen if you just have the right attitude'

No more having to avoid going into shops, towns, public areas of any sort where it might be crowded

No more staying in doors all day because it is easier than leaving the house

No more continual struggle...

Of course, I would let other people in the gated village to come and see what a fab place it is and how - if you design the physical environment right - even the most challenging children can flourish.

Now I just need to win the lottery.

y6e sbut then you had posters that talked about how children in wheelchairs

and then poster wher ethey said about galena not living in the dream world as she does not fit .Despite her saying that she might feel that be nice to have people that are unjdgemental

But im going to leave the thread now as realised we dont fit here either

OK

Oh no, trouble in the gated village already...

JustCallMeGrouchy I made the comment about children with PMLD in wheelchairs and I am sorry it caused offence. Please don't leave! What I mean is that in the mainstream world, the physical environment for people with disabilities is usually seen to be a mobility problem. People think that if you put in ramps, wheelchair swings in parks and lifts, all is solved.

I happen to think that this does not address the needs of a large proportion of children and adults with the most severe disabilities who are also mobile. I don't think it addresses the issues of those with PMLD either. I have repeatedly seen adults with PMLD being 'wheeled' around by carers who seem to ignore their emotional, sensory and communication needs and it depresses me.

Children and adults with severe learning disabilities who are mobile have profound access problems too and I know plenty of families who are so restricted in what they do because of safety issues for their children as well as attitude. I do not just refer to severely autistic children as my own child is not classically autistic and gets stared at for looking 'syndromy'. He also has physical disabilities so this village will be fully wheelchair accessible.

The trouble with mixing those with PMLD with those with challenging behaviour is that the latter aren't always safe around the former, but as we will have plenty of care workers, perhaps this won't matter.

I just want this village to cater for those for whom even disability groups don't cater for.

oooh can ds fulfil his lil engineer fantasies with you zzzzz? While I slope off to the coffee shop with Grouchy. I'll help with any assistive technology requirements.

You do all realise all wheelchairs will need to be fitted with lasers, and all those who can lift one will need a light saber in case of invasion by LEA officials, aliens, unsympathetic GP's and other "undesirables" to our lil utopia don't you? Creating these will of course require an encyclopediac knowledge of every Dr Who espisode ever screened, and intimate aquaintance with the Clone Wars. A star gate on the edge of the village green could be handy too. Could we also ensure that the lego store is kept fully stocked, just in case there is an urgent need to build a new Tardis fleet before lunch?

Edible flowers include marigolds, nasturtiums, roses and lavender - I'm happy to potter in the garden with any young munchers while their Mums put their feet up for a couple of hours.

Ooh ooh, can I have the show home please? - never anytime to make the house look nice. And can we have a huge warehouse type thing out of sight where every bit of SN equipment ever needed is kept so you can just wander over and take what you need and it doesn't take over your house.

No more 7 phone calls and waiting in all day to get something you need to feed your child or keep them safe. Oh and an on site hospital without the need to wait to be seen (particularly out of hours or at weekends...)

sorry, I haven't read all of this as I've just spent 2 weeks in hospital over the Easter holiday.
The closest we can get to this is the wonderful residential school DS attends where the staff DO care, know and understand the students and their families. The facilities and support are amazing, we can't offer anything to compare at home.
Its not a village where he can live with us but I don't think that would be any good for 8 year old DD.

Nah. I don't want a gated village, but a gated holiday complex where all needs will be met, schools, shops, parks etc. in a protected environment that we have 24/7 access to, but we still have our homes and lives in the real world too.

That would also do very nicely. However, I am fed up of living in a house/street/area where my son has no community presence and cannot even go to his local shop without major pre-planning in case he lashes out at everyone, (so we don't bother). I am beyond caring about the 'real world' and I think my world is real enough

What happens when he lashes out at everyone?

everyone looks horrified and I feel shit

Oh, and more importantly really, he gets very distressed and anxious at his own behaviour. He knows it is wrong but he seems compelled to lash out and he doesn't like himself for it

I want to come to come and live in this town, but I do have a few prerequisites.

It must have a wide variety of dragons and an inexhaustible supply of play dough that can be eaten or used to create a full face mask as the fancy takes.

It must have wooden furniture that its OK to chew on. No one must bat an eyelid at finding holes in wooden toys, chairs or the school book box.

I love the idea for a museum of useless important collections. I will need spaces in the sticks and stones galleries.

I will also need random blankets placed around the village so there is always somewhere for DS to go and hide.

If you wear soft, strokable clothing, you must accept being stroked.

There are many more.

Would it be too much to ask for one NT family per day to come and visit so we can all stare at their children as they walk quietly as it will seem so out of place?

I'm packing.......right now.

I had thought I might go live in the Outer Hebrides, in a little crofter's cottage. Grow my own veggies and just shut the door on the world. I'm ready, I think.

But, might come over to your place, instead.

yeah wendi don't bother with the Outer Hebrides, the weather's shit. Let's at least be warm outcasts

If there's strokeable clothing, can I have a go too? (er maybe the odd discarded cardigan, in case of anyone suing for odd behaviour from an adult on the spectrum??!)

We can have a Village Stroking Clothing Day, or even Month.

I tried hand-flapping the other day. It was most enjoyable so I propose a Village hand-flapping Festival.

Hand flappers of the world....UNITE!!

Wouldn't it be wonderful to live in this Utopia?

I often imagine how it would be if my son and others like him, were deemed the "normal" ones and the rest of us were all trying desperately to copy their condition, to gain entry to their world? Can you imagine the NTs being the outsiders? Passed over for jobs, stared at, mocked, pitied, given a wide berth in shops, asked to leave an establishment because they simply don't fit with the ASC norm?

My son knows he's different. He's bright. He's peculiar. He's utterly delightful.

Can we add some foot-tappers. rocking-back-and-forthers and finger-strummers to the hand-flappers events??

Wendi, hear hear!

What about those who repeat, mantra-style, a sentence? Totally out of context and despite encouragement, HAVE to speak it out loud?

Tired of people staring and wondering why I don't answer him CONSTANTLY.

I think this village should also be nudist... it would take away all DD's delight in covert inspections of other children's genitals.

Also, peeing in places then outside world considers unacceptable, should be the norm. Starting with the plush changing rooms in Monsoon... it was not an accident, she pulled down her trousers.

If you could possibly manage that for a 12 yr old, then we would be there like a shot... until then we'll continue to hide away .

Sorry, I'm having a bad day. Your village sounds fab!

You do have a valid point zzzzz, I don't think my body is fit to be seen in daylight either. I have no excuse... my one pregnancy was 24 years ago!

Hurrah! Well said OP.