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?

Thanks @gemloving its appreciated 😊

Thanks, I think you understand.

A pp asked how my DC ‘identified’- I think as a way of querying was I pushing too much for them to appear ‘normal’. But the thing is DC doesn’t ‘identify’ at all- or certainly can’t express it.

Still very confused about all the focus on clubs. Maybe people feel like they can ‘fix’ that part?

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),

I’d like my DD to have the opportunity to build relationships with children who don’t have learning disabilities as well as those who do. I’d like her to be accepted for the smart, funny, caring child she is, recognised for her strengths and supported in her difficulties to access opportunities available to non-disabled parts of the community. I don’t want her tucked away in a hidden corner with “her own kind”, I want her to have every opportunity to reach her full potential whatever that looks like.

She wants to have the kind of high school experience she sees on tv, she wants to try new subjects and see what fits but her high school experience won’t be that, because she would never cope. She wants to do gymnastics without being shamed for losing track of what she’s supposed to do, she doesn’t want girls at dancing being mean to her because she’s socially less adept than they are (presumably because, like a PP said, they don’t want a friend with learning disabilities).

What would your ideal provision look like? I ask this because although inclusion always sounds good, in reality it isn’t always possible to make all activities accessible to all people.
The best provision I worked in was a preschool which had 50% children with additional needs, of all different types. It was as inclusive as I have encountered, but there were still times when the children were split into different groups to access the activities, and not all children could do all activities. There was a discussion at one point about whether activities should only be chosen if they were accessible to all, and some people felt this should be the case.

Op I have read and then reread every single one of your posts on this thread

and I can’t see any specific example where your son has been stopped by the organisers from doing something because of his learning needs - whether that’s a club or any activity.

so I was just asking - have you actually been told “no your son can’t join this club or do this activity because of xyz?”

From what you’ve said… your son’s diagnosis is very “mild” compared with what you say he’s actually capable of, even that he may never be able to live independently

I work in mainstream education with a very diverse group of children and I just want to say, I hear you, OP. I don't know if I can comment constructively on solutions but I absolutely recognise the issues that you put forward. ASD, ADHD and epilepsy have all been addressed and recognised in my school through English and topic work, which is as it should be. Cognitive impairment, much less so. We have a lot of work to do here still.

And this is where as parents we come in. We engineer and create situations which allow our kids to access things in the way they want to (as much as possible).

Sadly we can’t stop other kids / people being twats to our vulnerable kids but we can seek out opportunities where this will be less likely to happen. If we have the capacity we can work with organisations to support this happening or we can start our own clubs / groups.

Ideologically, society should be completely inclusive of anyone with a difference. Sadly it’s not, but I’m a firm believer in being the change you want to see.

Yes it’s shit. No it shouldn’t happen. But it does happen and in the words of my late mother in law ‘you can only shit with the arse you’re given’.

Ideologically, society should be completely inclusive of anyone with a difference.
I think this is a myth, that has actually become very harmful for many children with additional needs. Parents have been pedalled the idea that any school can be inclusive of their child if only the school tries hard enough, but it’s not true. And then these children are being denied a decent education.
Mainstream classes can only be differentiated so far. I work every day with children who will not be able to access and understand what is being taught in class, no matter how much support they have. It’s such a waste of their time, and so bad for their mental health and self esteem.
The myth of inclusion and the subsequent lack of spaces in special schools is criminal.

And this is where as parents we come in. We engineer and create situations which allow our kids to access things in the way they want to (as much as possible).

Absolutely it’s for parents to support their kids in accessing as many opportunities as possible, however despite many varied attempts finding a mainstream gymnastics club, dance group, drama group, after school clubs who all say they cater to children with additional support needs when what they mean is they’re autism friendly. They don’t have the knowledge and understanding of GDD or developmental trauma and how those issues impact children and strategies for autism don’t tend to work with less understood or more complex issues.

I’ve offered to train staff/volunteers in these issues, agreed care plans and processes, I’ve yet to be taken up on the offer of training by any of the groups or clubs (I do this professionally so know what I’m talking about) and care plans invariably fall by the way side. Some of those relationships have ended disastrously when staff have worked against the care plan in place and have caused harm to my child because they think they know better.

Inclusion is a myth if the only way to “include” is to put all the kids with additional needs into a group or club separate from kids without those needs.

I know about schools being on the edge of discrimination. It's amazing how close they sail towards illegal while being careful to not give you anything specific to call them on.

One local to us accepted my severely dyslexic daughter but made it very clear that we shouldn't expect her to get an education. We didn't send her there.

Reading this thread I'm glad that intellectual disability seems to be a better understood description/category here than over there. It sounds like your biggest barrier is a lack of shorthand explanation of your child's needs/profile.

You are right, too, that by putting together all the children with higher needs your child is now spending a lot of time in a space where the majority have social communication barriers and behavioural support needs that make for a chaotic environment. A different kind of chaotic than a mainstream school, and maybe the right place for academic support, but socially it may be just as big a misfit.

Unsolicited advice - is there a pool locally where you can not only have lessons but also spend an hour social swimming? Our local pool has two lanes roped off for water play and I've found that children can be quite inclusive and play together with other children in that space across ages and ability.

I'd also maybe put out feelers for any Paralympic gymnastics, swimming, diving or other sport your child might find interesting. A 'special' gymnastic team might give your girl a lot of what she is craving in terms of being 'normal' and having a life more like the girls in the media she's exposed to.

The other place we found inclusive was drama. Even if they were acting, the teachers were most often genuinely willing to work with a girl who was passionate about being there even though she was clearly some years behind her age peers. The mixed age groups worked to E's advantage. Amateur drama groups that put on their own productions also sometimes can work.

I like the above suggestions for parkrun and RDA.

Socially it's hard. Friendship requires common ground. Otherwise it's tokenism. It's not easy to be friends with someone who processes so slowly and whose likes and hobbies are often 'young' for their age. As an adult my sister has mostly friendships with others who have disabilities, because that's who she's got enough in common with for the friendships to last.

Another skill to consider working on is board games. Having something to do together can ease otherwise awkward social engagements.

Parents have been pedalled the idea that any school can be inclusive of their child if only the school tries hard enough, but it’s not true.

I don’t think every school is right for every child, but I do think more children could be in mainstream if the school were fully resources to support this, but that costs money. Mainstream high school could never be made suitable for my DD, she literally couldn’t get herself to 6 different classes a day - and couldn’t switch her brain from one subject to another so quickly. She’s best placed in specialist provision. Other kids, with a bit of flexibility and support might manage well but that means resourcing schools so teachers have some wiggle room and we all know that’s not going to happen.

Simply put making schools, activities and clubs accessible in a meaningful way costs money - to provide enough well trained staff, equipment and time to accommodate those who have complex learning needs.

And most clubs are run by volunteers in their spare time. The reasons they are there will vary. Some will have an interest they get pleasure from passing on, some will be there to make sure the activity is available for their child, some will be volunteering to enhance their CV or to complete a DofE award. Make the training needed wide enough for them to be able to cope with a multitude of disabilities in the free time they give up and the activity will likely disappear for everyone because it's too onerous.
It's unfair but unless there are publicly funded helpers who can fit in with a range of activities it's hard to see an alternative solution.

I want to host a birthday party for DC, why do I who am already exhausted from caring, have to host a room full of kids with behavioural issues? I could do parties in mainstream with a handful of kids with ASD and learning disabilities and the other 20 kids from the mainstream class and I was good at it.

can you elaborate on this op? Why would you have to host a room full of kids with behavioural issues? Surely you just invite whomever your son is friends with / wants to invite? I’m struggling with that point to find anyone to “blame” for not being inclusive in this scenario.

If there is a particular interest he has, could you speak to a club about helping them be more inclusive?

Most clubs are run by volunteers and it can be incredibly hard setting up to be more inclusive. I run a youth sports club, and we have set up a specific session for kids with additional needs. But this has been an awful lot of work, on top of at least 5 hours a week simply running the club itself (on top of normal family life, my own kids, and full time work). We have a waiting list for this session as we're really limited on how many can come due to the extra support needed - and we've had complaints that we can't do more - we would totally bite the hand off anyone who offered to help support this!! But, we love it, and even had a teacher contact us recently to tell us what a difference we'd made to the life of one of the children which was amazing.

I understand where you're coming from, my ds sounds similar to yours. He has global developmental delay, learning difficulties and weak core muscles. We have tried many activities over the years. He went to swimming lessons, cubs, boxing, football, gymnastics and martial arts. At all of them, I've had to explain the situation, sometimes more than once, because his disabilities aren't obvious or visible. I've had to remind people that even though he is of an age, he is several years younger in his manner. It was always pretty tricky when we had a 5/6 year old tantrumming like a 2 year old. But as a 2 year old, he was very passive like a much younger baby.

Just to clarify a little about our session.

We hold 3 sessions of the club. Unfortunately, due to it's nature, having mixed ability groups doesn't work as it would put the less able at risk, and also hold the more able back. So to over come the social aspect - which is very important - 5 of the kids from the earlier sessions also take part in the session for kids with additional needs to provide the social aspect and also to provide support and encouragement. So it's a 50/50 ratio. Three of those are teenagers who provide direct 1:1 support to the three kids that need it. It's actually been the making of the club, and changes are being made on a regional level for the sport on the back of it which is amazing. We seem to have found a balance that works - but maybe too well as we have more kids than places at the moment and saying no is so difficult.

@AmericasfavoritefightingFrenchman

I highly recommend riding, its heavily subsidised where dsd goes. I'm not sure why you mention a bump to the head, it's no more or less dangerous to your dc than others. Choirs are usually pretty inclusive, we had two with significant ld's in our church choir choristers and they were treated really well, despite one not actually singing! (He loved the robes)

I think you need to try out different clubs, even branches because so much is down to the volunteers running them, some are more inclusive.

As to school, I fought for full inclusion and won, they wanted dd sent to special school

That’s why I said ideologically.

The reality is that this isn’t possible as things stand, if we stand by our principles we have the potential to damage our kids. So we adapt to do the best we can in difficult circumstances.

My sister is in this bracket, looks’normal’ as people comment. Behaviour is broadly typical, in the sense she is quiet/ withdrawn mostly- ie not a bother. It’s a nightmare getting her needs met, even professionals seem to just she ‘should’ve able to do things after looking at her.
We had a big thing with adult services, until her IQ was formally assessed as below 70. Couldn’t access anything. Despite a long history of needs and reports, it turned out that was the magic box adult services needed.

I’m sorry you’ve had that experience, whilst I’ve had some similar experiences it’s not all been like that for DS. But one of the things I’ve done (as well as training etc and volunteering so I could support participants and the staff) was set up my own groups which were open to all.

Don’t get me wrong, it’s not easy but it is possible.

And I totally agree with your last sentence.

What support has she received since the diagnosis?

Thanks @Seaweasel, it helps to know others see it too.

Language is so interesting isn’t it. I know the ‘d’ in ‘ASD’ is controversial- others prefer a ‘c’. I don’t really have skin in that game and I’ve said ‘ASD’ in this thread more or less without thinking. But ‘cognitive impairment’. It’s pretty blunt isn’t it. I’m not taking offence, but it is awfully interesting.

Sorry, lots of people have commented but we’ve had teacher strikes here today. I’ll probably have more time later to read and respond