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?

@cheapskatemum no I haven’t heard of Ros Blackburn. Curious. In what way similar?

In terms of an open-access activity, have you got any junior parkruns locally? They're 2km events on a Sunday morning, for 4-14 year olds, all run by volunteers. You just sign up and turn up and can take part as much or as little as you like - you can run it, or hop skip and jump, or walk it, everyone is welcome. There's an informal warm up beforehand and people usually do some hanging around and chatting, so gentle socialisation with a range of aged kids. And they need volunteers, from the kids as well as adults. So if he's interested in that side of things he could help out by marshalling and clapping and cheering everyone on as they go past, or giving out finish tokens at the end, or tail walking and being the last 'runner' to make sure everyone finishes safe. Parkrun is intended as a very inclusive event and hopefully your local group would welcome him giving it a try, it's very rewarding getting wristbands for the number of runs completed and helping out with volunteering and so on.

Thank you for your post @McGonagallshatandglasses. I understand what you mean about being ‘best’ at something and I’m sorry to hear about your family’s struggle to support your sister. It is just really hard to know even what a good outcome might be, let alone how to reach it.

You’re right about the language used - its really convoluted and changes, meaning it’s not easy to talk to others with a common understanding, especially across borders or if diagnosed during different time periods.

Another effect of that is if I say ‘My DC is disabled’ people will say ‘oh, how?’ If I then say ‘DC has a learning disability’ they will say ‘yes, but how?’ ‘But what kind of learning disability?’ Even special school receptionists.

Or they will say ‘yes but my DC has ASD and epilepsy’ (for example) by which they mean ‘my DC has clear and defined needs so we get the seat nearest the bathroom because you can’t even express yourself.’

All of the suggestions of clubs are kind and well meaning. I will definitely look into them. Actually, DC wants to do swimming and dancing. I don’t think it should be too much to ask to get to choose an activity you want to try- they aren’t very outlandish and everyone else sees choosing as a really unremarkable thing.

But also, it’s about more than the clubs. That’s a tiny thing. It’s about all of life.

I know what you mean @AmericasfavoritefightingFrenchman, my DD has a specialist placement for high school in August which is great because her educational needs will be met. But finding places where she can develop social skills with non-disabled kids is very hard going - and she will need those skills to function in wider society. Providing specific clubs, activities and events that meet her current developmental stage means she doesn’t mix with her peer group and while I understand a PP saying they didn’t want a friend with LD in childhood, nor in adulthood it means kids like mine face a lifetime of exclusion or tokenism and who would want that.

I don't have any children of my own but a close relative of mine has learning disabilities (and ASD) and I work with a few children with learning disabilities and I completely agree with you, OP.

I hate the whole "I'm deaf, don't treat me like I have a learning disability" thing. An adult (or in your case a teenager) with a learning disability is still an adult (or teenager). You don't need to talk to them like they're 3. You may need some patience while the person processes the information and forms a response and a good ability to explain things clearly but for goodness sake, acknowledge that this person still has all the same rights as you as has just as much of a valid contribution to make to discussions as anyone else.

I completely understand that adapting the supervision requirements for a club to allow for more vulnerable people is expensive but it's not actually any more complicated than having a ramp or lift installed for wheelchair users, is it!?

I saw a comment section of a newspaper article that suggested an adult with learning disabilities should be allowed to continue attending a children-only attraction and that to deny him was discrimination. So few people understood that actually, consigning him to children's activities only was both discriminatory to the children AND to him. So very few people even gave thought to how the adult equivalent of said activity should be adapting to have him attend.

You put it really well @Jellycatspyjamas I worry sometimes that we have done wrong by moving area- away from the kids who have grown up with my DC as ‘the eldest child of our parents’ friends who is the same sort of age as us and although a bit different has always been around at social events…’ I think that familiarity counted for something. The educational provision is much better here though…

You are also kinder than me in terms of understanding PPs

Op can you have a really open chat with his school? About this very issue

Gosh, this is very difficult and you have my sympathy, OP. I have seen on here people trying to split hairs about what is ASD and what is LD, so I can see the issue.

As an adult, unlike PP, I would have no issue having a friend at a hobby with an intellectual disability. I don't really have group hobbies at the moment - young kids and work - but I'd be happy to spend time with someone doing the same type of activity as me. I think hobbies would be an ideal "bridge", because I think at the moment work and kids occupy a lot of headspace and that might be less accessible to someone with severe LDs, depending on their situation.

As a child, I guess it can be quite difficult (though shouldn't be insurmountable), just because kids are still learning themselves. I think sometimes adults get it wrong in the planning - I recall having a girl with DS as a group helper when I was a brownie and she was a ranger and I really struggled as an 8 or 9 year old to process the fact that the grown ups were telling us that she was someone who should be treated as if she was one of the adults telling us what to do, when it was clear that she didn't understand the instructions as well as us and needed a lot of help herself. As an adult, I have a lot more empathy and realise that the adults had set her up to fail by trying to position her in this way and that they could have given more thought to the special responsibilities she could be given (ie not "discipline" but setting up and helping with activities etc) alongside encouraging her to bond with us as proxy peers too. She must have found it quite lonely to be put in that position where she couldn't really be in either camp.

Sorry I’m trying really hard to understand the issues here but am struggling.

I think you’re saying that your child is in SEND provision which is meeting their academic needs but you want them to be exposed to peers who are neurotypical rather than those with learning disabilities? What does your child want? (Sorry if I’ve missed this), my DS is able to relax and be himself with his peers who have additional needs, he doesn’t have to try and mask the things he is struggling with in order to fit in and then breakdown later as it’s too much. Or perhaps your child doesn’t identify himself as being like those other kids and I’ve missed it.

In terms of activities, there are lots of options out there which PPs have suggested, swimming in particular doesn’t need a specific club or anything surely? Just take them swimming. If you’re looking for something with more of a community, there are often clubs out there which are pretty supportive - I’d tend to go for something which caters to adults as well as kids so that the activity can be adapted to different needs and abilities and the adults can offer extra support if needed.

Yes I’m struggling too

My GDD son recently had a head injury needing medical attention. I was trying to explain he has developmental delays and communication issues so I couldn't answer many of the questions. We went round in a familiar circle "well what does he have that means he can't do xx" or "in what way does he have developmental issues". It's really hard to get past the lack of official box.

Yes @Busybody2022 ! I recognise that! I hope your son is ok now?

Even if you fit a near diagnostic box, it can be difficult as severity or presentation of the condition varies.
In our past experience we just tried different things as sometimes they were ok for a while but then the other kids moved to a level beyond but also it depended hugely on who was running the class/activity. Some just ‘get’ it and naturally walk the walk while others who talked up inclusion were useless or helicoptered.
And sadly the Send kids do get shoved together but it can work in some groupings - again not easy to predict beforehand. So worth trying anything and everything to see what works and also despite the labels that x is for mobility or y is for asd see if they would let your dc try it

I think it depends on what kind of activity you are seeking. Riding for the disabled is a great idea and I'd fully encourage you to put his name down for this. Something like a junior Parkrun again a great idea.

I think you have to pick the activity carefully. My brother has quite severe Learning disabilities, functions at the level of a 4/5 year old and is in his sixties. When he was in his forties my mum wouldn't let him socialise with other disabled people and would sign him up to classes at the local sports centre. He would be in a badminton class(for example) with other able bodied people and paired up to play with them. He was unable to cope with this and it would fail. This happened time after time and knocked his confidence.

@fiftiesmum it sounds as if you feel a bit squeemish at PPs suggestion we try scouts. Inclusion isn’t ‘would be lovely’ it’s essential. It’s supposed to be legally mandated. It’s not just maybe going to this one club after school or maybe not, it’s someone’s whole life.

I have no children with disabilities but can only imagine how isolating and frustrating this might be. Sendings hugs OP, no words of wisdom

I am not being squeamish I am being practical - I am talking about the low numbers of adults who are volunteering to help with such groups. Working patterns for parents, later retirement and longer commutes don't help.
I mean it would be lovely if there were a large number of adults available long term to have a fully inclusive group of youngsters

Where have you been told Op that you’re son can’t join a club?

Your

I've always felt that it's exceptionally difficult for anyone who is unable to communicate or express themselves easily. And very hard for their families. 💐

Thanks @SouthCountryGirl, of course.

It’a laughable really, you should have seen the lengths the majority of mainstream schools went to trying to discriminate just enough to put us off without exposing themselves to any sort of claim.

Actually I get it. One dc has diagnosis of asd - if you have a dc without asd but dev delay it's also like being excluded from a club. So many support things are geared towards asd but if you don't have that diagnosis then you are left in the cold.

I'm glad you're thinking about it OP. Next door to me is an assisted living place for people with LDs. One of the guys sounds like your DC, very friendly and sociable but with a low IQ. He helps out at the local stables, which does a lot of classes for children with LDs. It seems like a really positive place with a lot of volunteers both of people with or without LDs. It's a charity, so many of the classes are free/low cost.

Thanks for understanding @Hankunamatata