To wonder where the inclusion/equality is for people with learning disabilities?

[AmericasfavoritefightingFrenchman]

Or if you prefer, people with academic disabilities.

For full disclosure I have a secondary-aged DC who was initially diagnosed with global developmental delay. This was upgraded to ‘academic/learning disability’ when DC failed to catch up by the age of 5.

Mainstream school isn’t equipped to support inclusion for DC who can’t more or less keep up with the curriculum at the pace of the rest.

Specialist placements mean mixing only with other families of DC with learning disabilities.

Hobbies and clubs are difficult unless specially for DC with learning disabilities so again no mixing outside of that limited circle.

Support groups are usually targeted at Downs Syndrome or ASD etc so no welcome there.

Those with physical disabilities eg wheelchair users, those with CP, those who are Deaf regularly make a point like this: ‘I’m in a wheelchair/Deaf/etc, I don’t have a learning disability, so don’t talk to me as if I were stupid.’ All very well but where is the solidarity for DC like mine? Is it ok to talk to them as if they’re stupid because they do have a learning disability?

Even those with ASD, who make up a sizeable proportion of my DC’s peers at the specialist placement, are keen to point out that it’s any learning disability, not ASD, that is really disabling, again taking care to distance themselves from any solidarity with those like my DC.

AIBU to wonder what is left for us?

That loser comment is pretty shocking @onetimenamec

I worry that the situation is ultimately hopeless for people like my DC because society at large doesn’t really ascribe full humanity to those with a cognitive impairment. If you can’t conceptualize and articulate your own worth, you are condemned.

This is actually the reason, I think, why care for those with dementia is so shockingly awful, and so punitive compared to the equally expensive care for say, those with cancer. We would be outraged if toddlers in daycare were treated the way people in dementia-related day care settings are treated and I think the main reason is that we still expect the toddlers to grow and learn, but the folk with dementia won’t and so they are written off.

I think my DC and others with learning disabilities are written off early but in a very similar way.

I couldn't agree more. I truly feel that the cost of living crisis and the knife-edge living through covid has made many people more self-centered and unfeeling towards the vulnerable whom they perceive as effectively stealing resources from themselves in times of scarcity.
Many of my SN students are being raised by mums who say that their relationships broke down because of the challenges directly/indirectly created by the SN. Many are NC with their own families by the time their children are teenagers often because lack of empathy. They ask me what will happen to their DC once they are no longer able to support them or if they suddenly died because their DC often have literally nobody - not one single other person who would go the extra mile for them or even tolerate them in their homes long-term. There is no easy answer.
Something needs to be put in place to extend the scaffolding as they grow older rather than offering a wide range of the resources at pre-school age and throwing them off the cliff in Year 12.

I think the answers have to do with changing the way we ascribe worth based on physical and intellectual prowess. I think we also have to change the way we idolise independence as the sine qua non of life.

I have a suspicion that some sort of communal life would work well for my DC- I don’t mean a manufactured community of half a dozen folk with learning disabilities and half a dozen under paid carers, but a real community that included our whole family and other families and individuals with and without disabilities of whatever kind.

It does upset me when I hear the families and extended families of kids with learning disabilities distancing themselves from the possibility of future care. If we can’t even have compassion towards the needs of our own family members it all seems a bit hopeless. But again I think this is down to the idolisation of independence- and a caring role would limit the independence of that sibling or cousin or grandparent of the person with learning disabilities. Also it comes back to the way we tell the mothers of these kids that it was their choice, and thus their fault, to end up with a disabled child.

When she was a child, her mother insisted that she go to mainstream activities & clubs. She has ASD and dyspraxia. She has carried on in the same mindset. She earns a living giving talks about autism.

Sorry for late reply, the latest phone update decided to switch off my email notifications 😐

No problem @cheapskatemum Thanks for the reply. Sounds interesting

This has broke my heart, the best job I ever had was supporting people with learning disabilities. I used to have the group round for dinner , baking it's not allowed in my current role because of professional boundaries. Hopefully when I have time , I will volunteer for activity sessions and befriending.

You sound lovely @Fifi0000 😊

It's also exposure my NT DD regularly makes friends with people with LD and autism because from a very young age she knows I work in that field and how to communicate. It's not scary for her I think less othering more integration would really help.

You're so right about exposure as well. I understand how it can be difficult to know what/how to say things at first, but just a few little habits and a bit of familiarity can make communication possible and then you've got a starting point.

@Jellycatspyjamas talked about how just simple modifications to language make a really big difference to her DD, and can be the difference between enabling her to participate or not. She's right that it's not a huge ask, you just have to know what to do and be willing to try it.

And good for your DD @Fifi0000, and well done to you raising her to be accepting.

Me too. I sometimes find some of the boundaries constricting. I think they are fine for NT kids but my students and parents will need more hands-on help just because they require it.

Sorry, to ask OP, but have you tried church groups? Youth activities are usually quite inclusive and there's less social
Posturing going on. Plus lots of elders who have had exposure to people from all walks of life.

Also, do you think you'd have struggled to know how to interact with someone with LD similar to your DC at a social group or school etc before you had her? (Obviously you would not have called a child a loser, which is despicable, but in terms of more positive interactions). I ask this because I found it quite hard to know what to say to even my friends' NT kids sometimes before having my own. If so, what do you think would/could have helped "past you"? I agree exposure is probably key.

No need to be sorry @bigbabycooker. My friend with learning disabilities was a server alongside me at Church when we were teenagers. We're Christians, but a bit between Churches at the moment. Even that can be tricky. DP is Catholic and people are generally welcoming but most masses round here are said at the speed of light. I feel like I've been in the middle of a whirlwind after the service so goodness knows what DC feels! I think that's an area where we need to put more effort into looking for the right place.

You talk about elders so I'm guessing a protestant tradition? We haven't always been Catholic but, as DC has grown up, the protestant emphasis on intellectual assent to propositions about faith, and on reading the Bible and deeply pondering its meaning, has felt increasingly alienating. Sola Scriptura isn't very comforting if you can't read.

You're right that it can be really hard to know what to say. I'm not sure if 'past me' did very well - I don't think I instinctively knew what level to pitch at or anything like that, with kids like my DC - but I did always try to make eye contact and smile, to show basic friendliness and say hello. With my friend at Church we just muddled along and I was lucky, I think, in that at a formative age I had a group of friends with disabilities who were happy for me to ask questions when I didn't understand, and so I learnt that it's ok to ask someone what they need or prefer if you don't already know.

I got a bit teary the other week because DC and younger sibling and I were at the supermarket and we passed a youngish chap in a motorised chair who was out with his carer. My DC both stopped to say and sign 'hello' and ask 'how are you?' - unprompted, they just both really like saying hello to people and their category of people includes actually everyone. The chap signed hello and his carer said hello but I could tell from her face how surprised she was that someone would stop to talk. We wished each other a nice evening and carried on shopping but it made me sad to think that such a basic interaction can be so so rare.

I’m not sure I quite answered your question but thinking more about what could have helped me know how to interact -

I think for me seeing examples is really key to how I learn. This is another reason I get worked up about the lack of inclusion. From a slightly more selfish perspective, if I never come across someone with learning disabilities I’ll never get chance to learn how to interact.

Another thing that really helps if if the parent/carer is able to give some pointers. For instance it helps my DC to have a good 5-10 seconds processing before responding. This feels like aaaages in conversation and since DC can’t explain it in time someone needs to explain it for DC to an unfamiliar person. For ‘past me’ knowing this about someone would have helped me not to assume their silence meant they didn’t want to talk.

The last thing that would have helped when I was younger is knowing that it’s ok to just meet the person at their level. It might not be the most satisfying interaction I have all day, but I get plenty. It might be their only interaction so it’s worth my putting myself out a bit, and I might well be surprised by the outcome 🤷‍♀️

Oh good - I guess I was being cautious on the church, because not everyone is religious. I'm more fluffy CofE than anything and was using "elder" as shorthand for the kinds of volunteers who frequently make the whole thing work. I do have friends who volunteered with catholic charities who did befriending as teens and who found that mutually rewarding. It sounds very much as if you might be seeking community, given your recent move and the inherent difficulties of building one nowadays (my eldest is 5 and I am only just feeling as I have my own community), in addition to the additional difficulties of finding support for a child with learning disabilities.

Thanks for your helpful reflections, which I will try to think about in my own interactions and in guiding my own children in future. It does feel as if this is the kind of thing that should be taught in schools (rather than some, not all, of of the child sexuality stuff that seems to be in vogue) - not every class would have a child with a disability and you wouldn't want to make someone a project if there was, but the idea about how to be a good listener, understanding difficulties, simple signing, what being a good citizen should really mean. The simple idea that it is possible to brighten someone else's day with a smile and an interaction. Supposedly the government had a loneliness czar for a while (maybe still does?), but I don't remember seeing anything that made clear that loneliness is everyone's problem and small acts matter.

I'm sorry that you've struggled to find meaningful participation for your DC - I can see how that might be quite tricky after 8 or 9 for a bit, when child activities can narrow from kids trying lots of stuff, to specialising in what they are most interested in, which often aligns with what they are "good at", which can be exclusionary. I liked the sound of PP's club and, when I played basketball very competitively as a teen my favourite session was the social one that was very inclusive - actually, even if you are training competitively it can be really nice to do a session that is purely for the love of the sport, rather than to win and it is possible to do both.

There are some quite good theatre saturday schools near me that are very inclusive and cater to the children who are backflipping across the stage and those who are shy, have difficulties or who might not have any prior experience. I don't know if that might work for your DC? Or maybe a choir?

Hi @AmericasfavoritefightingFrenchman.

I just wanted to say a huge thank you for starting this thread. You’ve articulated so many observations I’ve started to have but haven’t quite managed to express as I try to help my DC find their place in both the mainstream and special needs worlds. My DC has various disabilities but the learning disability definitely feels the biggest barrier to inclusion.

Thank you for sharing your wisdom and helping me make sense of my thoughts (including why I have such a violent internal reaction to any mention of superpowers!)

Thanks @bigbabycooker, you seem very thoughtful, and its honestly really encouraging that someone who isn't personally affected is giving time to these kinds of questions.

You're right that a sense of real community is something that we are lacking. Maybe its down to Covid, but we have found that the community of other parents in our position, that was supposed to be a benefit of a specialist placement, has not materialised yet despite efforts at sharing contact details and making invitations. The community that @Marblessolveeverything described right back at the beginning of the thread sounded really lovely actually - definitely heading in the right direction. The social basketball you've described also sounds really well thought out. We will keep trying!

I think you might have hit on something in terms of what schools could do very practically to be more inclusive, regardless of the kids on roll at any point, which is to teach some augmented communication strategies as standard. I know some nurseries do this anyway because it is useful with the youngest pre-verbal or only-slightly-verbal children, but it could be extended through Reception at least. If all the teachers learned at least some basic Makaton and had some PECS resources to hand, they would be able to teach the children routinely and then everyone would have a means of having a successful interaction with a non-verbal kid if and when one joins the school. Just being able to sign 'hello' is the biggest deal because it lets the non-verbal kids and their carers know that you're a bit aware and likely to be 'on their side', open to hearing what their kid needs etc.

Hi @MrsEddieP, thanks so much for your post. It's always encouraging to hear that I'm not alone in thinking these things. Reassuring to hear you feel similarly about superpowers too... 😬

I'm not convinced I have any wisdom though, just a lot of built-up frustration and anger and heartbreak... You're really welcome to share any thoughts if you want to 😊

@Swimmingagainstthewide @cheapskatemum @countrygirl99 @WiddlinDiddlin and others who so strongly recommended RDA, I just wanted to come back and let you know what my experience has been so far over the last 10 days of re-investigating this. So often on these disability-related threads posters say ‘well have you just tried looking into this thing or putting that in place…’ as if it will be a guaranteed solution.

First, looking up the website, there are lots of nice easy buttons for people who want to donate or volunteer- it’s a bit trickier to work out what to do if you want support. To be honest most charities who offer support for learning disabilities are like this.

Then there is the blurb to say that most participants are referred by healthcare workers, which may be true but is another bit of off putting gate keeping.

When I found the contact address for the one club nearby who offer sessions outside of school hours, I sent a polite email giving some info about DC and asking to find out more about available opportunities. There has been no reply, and as it’s been 10 days I assume at this point there won’t be. Yes people are busy and volunteering but 10 days is a lot in the world of emails and texts.

I know that you meant well in making the recommendation, but it has felt like another rapid transition from a little bit of hope (‘there’s stuff out there for us after all’) to more rejection.

Ultimately though, I’m upset at lack of inclusion broadly across every aspect of my DC’s life, so I suppose one afternoon a week of horse riding is unlikely to have provided the answer.

Sorry to hear that @AmericasfavoritefightingFrenchman. I would give them a ring. My son is on a waiting list for the nearest RDA stables, after the centre he used to attend was sold & the new owners don't offer RDA. He's going to a "meet the ponies" afternoon where you get to stroke the ponies, stroke them, feed them & then get served tea & cake. The stables will get to see & meet him too. I don't know whether the RDA place you've contacted do this sort of thing. If they do, it would be a start.

Glad your son is getting to have the afternoon out at least- that sounds nice. Hopefully he gets a proper spot soon.

I suppose I could try the national office number. Let’s face it though- without a referral from a physio or community paeds, and as a child who attends school very happily, DC is going to be at the bottom of the waiting list.

A couple of times when viewing specialist placements we were told in advance about facilities such as hydro pools, links with the local RDA, art therapy, soft play etc but then not allowed to see them on the school tour because that school reserved those facilities for cases of ‘genuine need’ which they felt DC didn’t display. I think this might again turn out to be similar. The sceptical part of me wonders if ‘genuine need’ actually means ‘potential to improve’ which they assume my DC lacks…

In the case of SS I think ‘genuine need’ probably means “detailed, specified and quantified in the EHCP”.

That’s probably the sensible answer @JustKeepBuilding.

The experience for us was that mainstream were saying ‘we can’t meet DCs needs any longer. DC deserves fantastic provision like that over there with all sorts of inbuilt therapy options.’ And then the special school were saying ‘DC won’t be allowed to access any of our fantastic provision but can come and be hidden away with only other SEND kids doing classroom stuff with no expectation. Of any qualifications at the end. Isn’t it great?!’

Fortunately the school now is fantastic both in terms of offering access to enrichment within the school week and pushing for as much achievement as DC can manage. But the therapy options are still lacking.

Sadly many schools don’t provide things that aren’t in the EHCP and many don’t support parents to get them included in the EHCP. You might have to appeal but you can get them included and then they must be provided.

My son has dyslexia, social communication difficulties and anxiety. Also awaiting ASD assessment. Just another recommendation for horse riding. My son has joined a local equine centre and it has been amazing for him. He has gained so much confidence and is independently trotting and starting to canter. He has found his thing and is actually good at it. Yes he finds the instructions difficult but seems to get there in his own time