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?

I’ve got a few minutes and I’m just really, really bothered by the ‘with his own kind’ comment from @JudgeRudy. Possibly that was their intent.

Read that back replacing ‘learning-disabled’ person with ‘black’ or ‘Jewish’ person. Ugh. It’s so obvious then.

It really feels like having a learning disability is the last minority where it is acceptable to exclude, to hold prejudice, to direct hateful views and hurtful comments. And like society is really pretty happy with that overall.

You really don’t want to answer my question Op re whether actual examples of clubs and activities where the organisers have precluded your son from joining

I’d also be interested in what your point was about who you invite to parties?!

@AmericasfavoritefightingFrenchman Hi there, I haven't looked through previous comments but I wasn't intending to offend or concern. I'm pretty sure I've said I have no issues with anyone joining in with anything....if they're able. You're suggesting exchanging learning disabled for eg Jews but that's really not the same. It would be like exchanging learning disabled with eg persons above 120cm or people with a drivers licence.
By 'kind' I wasn't implying someone was a separate breed....but clearly a LD child would probably not get much from attending a poetry recital event, in the same way I don't want to attend a jazz concert, a rugby match or a bridge tornement. I have no interest in the first two and no skill in the last. Id love to go skiing but im excluded because i cant affird it. Id also like to be in a band but im not musical.
Perhaps 'tribe' would be a better word, so they're able to form real friendships with people who connect on the same level. I'm not suggesting complete segregation.
I'm still unsure what AIBU or want is.

@AmericasfavoritefightingFrenchman

I can understand why you are upset with the comment.

I think inclusion can a really tricky one, actually, as kids grow up. I think that running (parkrun) is probably a good example where you can find inclusion (because everyone can do it to a degree) or amateur dramatics where you can match for skill etc. or riding or sailing, where most people will do it as a hobby with no real expectations of getting to a certain level by a certain point.

The harder ones are the skills leading towards particular levels or competitions - I imagine that most people who do ballet, swimming or gymnastics lessons etc above a certain age are probably getting really adept at it and taking grades etc, so it is perhaps then harder to find someone of the same age just doing it for fun to mix with. I agree that there should be more of a range of social or fitness focused clubs that people with learning disabilities can be included in, though.

I went to a basketball social/for fun club alongside playing full competitively in my youth and the coach would ensure that there was a mix of abilities in each team; there were some really good teenage players (including his son) who could make all the baskets they wanted to, but were put in assistant coaching roles and played in those teams that had weaker players so that they could keep the team in the game and set up plays that would keep weaker players involved. This kind of thing could absolutely work and there should be more of it.

I can understand that a learning disabled child in an environment geared to children with ASD or physical disabilities without learning disabilities would be in a tough place.

I'm confused here too. It seems she's saying when her son went to mainstream school she would happily host a party for 'mainstream' kids....but now he's at a 'special school' the majority of his friends have 'special needs'. She feels society should be 'inclusive' but doesn't want to include her sons friends because their behavioral problems are hard to manage/not what she wants to deal with. I'm can't see what the difference is. 5 pages on im still unsure what she wants/expects.

Ah, ‘if they’re able’. Like ‘of course disabled shoppers are welcome, if they’re able to get up the steps into the shop.’

Supported housing was the main thing. A social worker as needed, before being passed over to a charity. They manage things like housing benefit claims.

She was in a cycle of vulnerability and her mental health spiralled. I couldn’t keep the children safe with her behaviour and those drawn to her. The mental health team though kept saying they couldn’t manage her learning needs and bouncing her off from support.

Her ESA claim was moved to the group where she was constantly failing work related training, eg turning up to the job centre and not ‘complying’ as she can’t log onto a computer. Her social worker found housing. She was previously housed with others, but didn’t fill in forms or manage rent and was evicted. She attracted people who preyed on her. She had a minor police record for something nobody with full capacity would have been given, shoplifting related but being taken there and told what to do.

I could go on for ages. Basically she was engaging in dangerous and risky behaviour I couldn’t manage, due to becoming a target for characters that meant harm on a college course she was entered on but dropped out of. She couldn’t understand such basic things, like they’d read a letter out loud and say it said she had to give money or do something fraudulent. I had very young children and she was here but I couldn’t keep them safe and support enough.

Since she’s had support she has not engaged in any similar behaviour, has built up her mental health and made a happy life.

Before it’s implied it was behavioural. She has never been aggressive, or acted out. I’m talking risk more that she was asked to leave at 2am and she’d do as she was told, leaving the door open. Or she’d leave the gas on. Or she’d give the address to nutters who thought she’d give them her benefits or had access to a nice house. She was passive in herself and complied. Her own harmful acts were self harms and attempts.

Its hard to describe how difficult it becomes to manage a very attractive older teen/ young adults told by the job centre they must attend courses (she can’t navigate transport, they’d expect her to be dropped off!). It’s horrible, but girls like this are a massive target sexually and financially

No, not like that at all. Like you're welcome to come fishing....if you have a rod. You're welcome to come GoKarting....if you can see, you're welcome to join in Scouts if you're able to follow simple instructions (to keep everyone safe), you're welcome to watch the play/cinema/band provided you're able to sit reasonable quietly and not screach/cry throughout...
Reasonable adaptions need to be reasonable. If your child takes twice as long to understand something, or maybe will never truely understand, what adaption do you want? I'm not being deliberately awkward. I don't get what you want and how society (we) can help.

It must be very frustrating trying to find inclusive, appealing and fun activities for your DS. IMO it’s important for all children & young people to have interests and hobbies as well as peer groups outwith school.

Is there more funding for ASD children as social issues are more intrinsic to their diagnosis, whereas (eg) a global development delay might make finding a peer group harder but doesn’t of itself give issues with socialising?

I’m guessing you’ve tried walking through it with club leaders, using super-clear plain language of “DS will need extra time to understand, and needs clear simple instructions. Everything will need to be explained step-by-step, one (or two) steps at a time. He might need help figuring out how to do something”. Don’t assume that because someone “should” know that they do. Oobviously I’ve no clue what support you’re dc needs, this is just example!

Does school have ideas? Do you have a sw who can find options?

@HedgeRin I’m so sorry to hear of all the stuff you’ve been though. You describe a lot of things I’m afraid of in the future. I’m sorry especially about the meaningless box-ticking hoops to try and get support and the way services find it so easy to say those with learning disabilities must be someone else’s problem.

I’m sorry @JudgeRudy but you’ve succeeded in confirming my opinion that you are extremely prejudiced. It sounds like you want people like my DC to just sit and dribble in the corner. Preferably one where you don’t have to accidentally see them because then somebody might ask you to do something about it. You said earlier you wouldn’t want to have to ‘be a carer’- good, you’d be entirely unsuited to it.

Re the birthday party, I meant something sensible but I don’t think I explained very well. I’ll take another swing later when I can give more time to writing it.

@AmericasfavoritefightingFrenchman your assumptions are incorrect. There's no evidence (or indication) in any of my posts that would lead a reasonable person to assume l don't care or that I want your son segregated 'to dribble in the corner' out of sight! That conclusion is actually in opposition to what I've said, unless you're calling me a liar. Please re read.
I hung around to hopefully clear up your misconceptions and reassure you perhaps, but you're not understanding. I (and others) also hoped to hear some sort of explanation of what it was you actually wanted from society, in practical terms and what problems youve encounteted but i doubt we'll hear. l'm moving on now as I'm aware this is clogging your post.

Ok, about birthday parties, let me take another shot.

This was partially in response to the PPs who were saying what terribly hard work it is to be inclusive in any setting, and partly in response to the PPs who wanted to know what was wrong with having a peer group made up entirely of kids with learning disabilities and/or ASD as provided by my DC’s specialist setting.

So yes, I understand it can be hard work to have an inclusive event because I’ve done it. When DC was in mainstream primary we had ‘whole class’ style birthday parties. Actually it would be maybe 20 kids from the mainstream school and another 5 or so that we knew from elsewhere. A couple of kids with learning disabilities and another handful with ASD. Based on kids my DC had met, liked and wanted to invite. My DC is pretty sociable. These parties worked- my DC and the guests all had fun. I had to work pretty hard but it was manageable. It doesn’t take tons of special knowledge- about what you’d gain from getting to know a kid that your 7 year old was friendly with. I did the food and catered for allergies and extreme preferences etc, I was the mc and I could use some Makaton to support and I didn’t make lots of toilet jokes in front of a bunch of kids who actually were still in nappies. And so on. One other nice thing was that invites were reciprocated- from the mainstream school kids as well as the ones with additional needs- in part I think because we showed it was doable.

Now that DC is in a specialist setting, their peer group of kids they get chance to meet, like and want to invite is restricted to the kids with additional needs. This is exacerbated because we moved area, so lost the incidental contact with the kids from the mainstream primary. So if I want to do a party, all 25-30 guests will have additional needs. This is too much for me to manage on my own. It’s too much for the professionals- the teachers. They teach maybe as many as 20 but more often 10 with four other teachers/TAs present at all times. It’s too much for the other parents too, and so the parties don’t happen. There hasn’t been one since we moved setting in year 3.

So yes, including one or two folk with learning disabilities can be hard work, but the alternative pushes all the work onto parents like me who are already overburdened and means stuff just doesn’t happen.

I expect someone will say just do 1:1 play dates, but this is hard too. When DC was in mainstream we managed to do this and built relationships gradually at the school gate. Now everyone lives miles from the school and gets transport. The parents rarely meet. So they are reluctant to offer or accept hospitality. It does happen, at the rate of maybe 1 per year.

Some PPs are desperate for specific examples of exclusion. I’ve said generally that clubs have not been welcoming, that we have ‘the wrong type’ of disability for other disability specific clubs, and that schools have gone out of their way to put us off.

I suspect if I give specific examples they will be reasoned away as someone’s bad day, or my misunderstanding, or something else less than discrimination. But here are some of the ones that I don’t cry when retelling any more.

One school argued - in writing! - that they couldn’t offer a place to DC as the head was new to the post, expected an ofsted inspection imminently, and my DC would be a distraction. Also my DC might represent a trip hazard to other children in class. As if my DC were literally a great big thick short plank or two.

At another school, the head called us in for a private chat at the start of a group tour to say ‘I don’t really know why you’re here, our reception class is full already.’ We reminded her that DC had an EHCP and so had to be admitted if the LA agreed to name that school. She glowered with rage and said ‘my governors would never allow that’ - a legal nonsense - and spent the tour making unfounded asides to us: ‘Look at our brilliant art room - of course your DC wouldn’t cope with using it…’

A third school said ‘we don’t think we would be the right choice for your family- we are a very sociable school and we often have events like ceilidhs.’ Aside from the sheer perversity of using a selling point to push us away, if they only knew how much I long for a ceilidh. They could have had a free caller and access to discounted musicians. And before anyone jumps on me, DC loves a good ceilidh too. Footwork may not be precise but enthusiasm is all there. Brave enough to ask for a partner too, not just stick by me all night. Stupid school didn’t know what they were missing.

DC has a younger sibling at a dance class. They sometimes run open workshops in the holidays and are happy for DC to go along to those. DC loves it. The teachers steadfastly ignore any message asking about opportunities for DC to be involved more regularly. I can’t push it further because I can’t spoil it for younger sibling but honestly it does spoil it a bit because why can’t they at least have a conversation with me.

And so on ad nauseam.

We used to organise parties and invite parents to stay. Had some great swimming parties, bowling etc and yes friends were further afield but it made it more of an event when they came together. Now they’re older and have moved onto different colleges they arrange to go for walks, bowling, five aside football etc because they’ve kept in touch. DS still occasionally sees friends from mainstream ed but the gap between them socially and emotionally is so great now that they have very little in common. In activities it’s easier because I ensure that they include a range of ages so the gap is less evident and the adults provide a level of moderation of interaction (also they tend to be ‘nicer’ kids who are supportive rather than bullies).

It’s hard but you adapt expectations and preconceived ideas.

I'm so sorry that all of those things happened to you, OP. Appalling.

Was mainstream primary school better at being inclusive for learning disabled kids without social difficulties once upon a time? Reason I ask if that I had a child in my primary school class who probably (from what I now know of symptoms, I didn't at the time) had FAS related learning disabilities - he was very very far behind the class in terms of reading and writing etc by year 6 (probably at the level of a 5 or 6 year old) and often couldn't follow instructions or understand consequences at the same level as others. He was from a family in which, in an ideal world, he probably would have been cared for elsewhere (his mum was openly unkind and neglectful towards him and sibling, but no obvious signs of physical abuse). I think he was generally included in most outdoorsy/playground games, on school trips, in art projects etc, even if he couldn't really access the learning. I think we all understood that he was a bit different and that we needed to try to include him where we could and generally were quite good at this by the time we got to older years. He did a lot of separate reading etc with parental helpers rather than necessarily participate in what we were learning so that purely academically his achievement might not have been as good as if he had been in a specialist setting, but he had a rounded experience. Maybe in the 90s the curriculum was less pressured?

Now everyone lives miles from the school and gets transport. The parents rarely meet. So they are reluctant to offer or accept hospitality. It does happen, at the rate of maybe 1 per year.

I asked the school to circulate a letter to the other parents in DD’s class of 10 in a special unit, to set up a contact list of parents. Parents could live 10 miles or more from the school. Every school holiday, one or more parents organised a picnic or trip to a park or soft play for all the children and parents. We did do birthday parties; and generally all the children in the class were invited, because they only got 1/3 of the invites, “normal children” could get. If I had felt unable to cope with one or more children with behaviour problems, I’d have asked one of their parents to come too.

We all wanted our children to have a social life after school, so we took the opportunities to make it work.

Surely parents would stay in this scenario.

and whole class parties beyond 8 for any type of child… shudder! Can’t think my two had any invites for whole class parties beyond year 2!

I expect someone will say just do 1:1 play dates, but this is hard too. When DC was in mainstream we managed to do this and built relationships gradually at the school gate. Now everyone lives miles from the school and gets transport. The parents rarely meet. So they are reluctant to offer or accept hospitality. It does happen, at the rate of maybe 1 per year.

but where is the discrimination in this? I can’t see anyone at fault

One school argued - in writing! - that they couldn’t offer a place to DC as the head was new to the post, expected an ofsted inspection imminently, and my DC would be a distraction.

either Bull shit or a very very stupid head to put this in writing. State school if ofsted… so you should have gone to LEA. He would have been sacked (he broke the law) and you’d have got the place. Why was he even writing to you? You don’t ask for a place at a state school?

aside from anything… you should have gone to the papers!!

We reminded her that DC had an EHCP and so had to be admitted if the LA agreed to name that school.

not if the reception class is already at capacity as you said it was

"not if the reception class is already at capacity as you said it was"

The bar for refusing a place for a child with an Ehcp is higher than that. The child being in the class would have to be " incompatible with the efficient education of other children". Merely going over capacity isn't a valid reason for the school not to be named on the EHCP.