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?

Just to clarify the terminology further, as it is very confusing:

A learning difficulty is not related to IQ, it means things like dyslexia. A really clever person can struggle academically to complete assessments if they have dyslexia, but can keep up with understanding the lessons.

A learning disability usually means very low IQ, although as OP has explained the way it is defined is now not just about IQ. People with learning disabilities will never be able to keep up with the pace of mainstream schooling.

Because learning disability is often co-diagnosed with things like ASD or Downs, provision for people who solely have learning disability can be sketchy.

Riding for the Disabled is set up for people like your son. Until recently I was a centre trustee and the majority of our riders have learning disabilities. Riders needs are very carefully evaluated and if necessary there will be 2 side helpers for any rider. Many of our riders find being with the horses gives them a massive confidence boost and can help communication and social skills. I know of one young man who was non verbal until he started riding and for a long time would only talk to the horses. He can now hold a conversation - slow and difficult but it's a proper conversation.

I’m sorry for your DS’s experience, especially at a club for people with learning disabilities. That’s pretty poor support.

I don’t know what DDA is. The point is that I don’t want to have to fight. If I have to fight to get DC a spot because they don’t want to accommodate, how can I trust them to look after DC once they’re in? That model only really works where the DC are able to advocate for their own needs and make it known if they are mistreated.

My son has severe asd and severe learning difficulties but he's always been accepted at any club or activity he's wanted to try so i don't really understand what your asking 🤷‍♀️

Thats good for your child but I would suggest not necessarily typical. My DD has global developmental delay and we’ve tried all kinds of different activities. She struggles to understand, retain and act on instructions so needs a lot of reminding to keep herself on task, she also struggles socially, diets read social cues etc which make her interactions with other children awkward at times.

All of the clubs I spoke to described themselves as inclusive, said they had staff trained in working with kids with learning difficulties but invariably my DD struggled. It was fine if the one trained staff member was there, and she was part of their group but if not staff were at a loss. They wanted her to follow instructions and do activities other kids her age were doing, got frustrated when she forgot what she should be doing, or when she couldn’t quite manage. They would tell me she wasn’t interested when actually she needed a bit of guidance and didn’t know what to do when there wasn’t any. They would get annoyed with her and make her sit on the side.

So while on paper they would accept her, they didn’t have the skill or experience to engage with her, which isn’t inclusion.

DDA was the disabilities discrimination act. It's now the Equalities Act

This. The idea that special Ed is somehow lesser, undesirable and a social and academic dead end needs to go out with the dinosaurs. DS2s special primary school worked incredibly hard to prep appropriate pupils for mainstream and individualised teaching so all achieved at their own pace and practical skills were a big focus.
Many of the 'included' adults with LD with whom I used to work left mainstream school to face all the problems with wider society that their specially educated peers did.

I believe that depriving pupils who would benefit from a special school by making all schools so-called inclusive is highly immoral and sometimes downright cruel.

Thanks for the helpful explanation @Stillcountingbeans

To further confuse things, paediatricians aren’t necessarily precise with these diagnoses- I think it’s not interesting to them honestly- and local authorities often take liberties rephrasing them because their provision criteria are so limited and insufficient.

So for example DC’s diagnosis reads ‘academic disability/learning difficulties’. This was transcribed by the LA into ‘severe learning disability’ - though we found out later that was simply done because they only offer provision for SLD, and they couldn’t place DC unless the diagnosis matched. 🤷‍♀️

I get this.

My 6 YO has a GDD from aged 3, paeds want to upgrade this to learning disabilities without seeing him. He doesn't have a learning disability, he has some form of neurodevelomental issue. No one wants to know and he can't access so much. My oldest autistic child fills a neat box so can access stuff.

I'm unclear what your asking OP, or what your looking for but I'd say if your a parent to any disable child YANU to be frustrated.
Inclusion is very difficult to both facilitate and 'enforce/encourage. I often hear parents talk about the challenges they face on behalf of their children but generally they have no disabled adult friends of their own.
Medical terms and labels will change and its difficult to not offend so eg talking to someone as if they're stupid....well if you said intellectually challenged or low IQ or not too bright would that be better/worse.
I probably wouldnt have wanted to be friends with a LD child anymore than I'd want to befriend a random LD adult. I wouldn't however mind someone joining in our game/activity as long as I wasn't designated carer. This is where I'm confused. Do you want your older child to be able to join his mental peers say in a drama group, or do you feel that he should be able to 'tag along' at the youth club where the kids his age are chatting or having a game of cludo which he can't follow/enjoy? I'd say condition specific groups are probably the best for true friendships to develop.

What would you like OP

This conversation is complicated by a lack of shared language.

Somehow in the uk 'academic disability' is used for what we in Australia would say are 2 entirely seperate groups (with potential crossover).

Here it's 'intellectual disability' or ID for someone with an IQ below 70. Moderate if 50-70, severe if below 50. My sister falls into this category.

Alternatively we use the term 'learning disabilty' LD to describe people with dyslexia, dyscalculia and dysgraphia. People who have something blocking their ability to learn in a typical manner but with an IQ in the average or above average range.

Many with an LD will be successful in mainstream schools with the right supports and it doesn't preclude independent adult life. But an ID is different. And that's what you are describing.

For what it's worth, my mother fought to keep my sister in a mainstream environment. At 16 we had no option anymore and we spent quite a long time trying to work out what options were open to us. At 31 she's living independently, with support workers helping with almost all life domains. She will never be safe to drive. No possible workplace has been identified despite lots of expert supports. Learning still happens, but it's sloooooowww.

I'm sorry you are struggling to find a place you feel like your child can be included. You are right, your child should be welcome in sports and clubs but often that welcome will be hollow. And all children should be able to have their needs met in their local school and community- but England really doesn't do inclusive education well, and specialist provision does have some benefits. For my sister, it wasn't till her late teens that she was ever in a space where she was successful and the 'best' at something. I think she'd have been happier if we'd found somewhere earlier that gave her that.

@Timesawastin yes, ‘so-called inclusion’ is rubbish for everyone if it’s not really working for the most vulnerable and yes, a good specialist placement can be fantastic as far as school goes.

But my DC has always wanted to be very sociable, and was actually quite popular in mainstream until the others’ interests really outpaced DC. Now DC is surrounded by kids who struggle especially with social interaction- that doesn’t make it easy to make friends.

Also why should DC be hidden away with only other disabled kids all the time? If 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. I just can’t cope with a whole class full of kids with additional needs- but that hurts my DC and their classmates that it doesn’t happen now.

I’d check this out locally. It’s generally done by charities who fundraise and the cost is just a couple of quid a session. A friends 10yo goes and it’s really positive. They aren’t romping through the fields though, The horse is walked on a short rein and they play games often involving throwing hoops or beanbags. Simple stuff but kids really enjoy it. She had a birthday party for some friends there and my children absolutely loved it.

It’s actually quite hard to fall off a horse that isn’t moving at speed. Other stuff that is available locally is a disabled swimming club and the local kayak group does a weekly disabled session run in the pool. Might vibe different in your area but both things worth checking out.

I think people are confusing the term learning difficulty with learning disability. They are not the same.

A learning difficulty may be something like dyslexia which had no bearing on IQ whereas a learning disability refers to an IQ under 70.

That's right the centres are very heavily subsidised by fund raising and dependent on volunteers. Some riders will never get past walk with 2 helpers, others will go further. A few centres have carraifmge driving as an option. Un mounted pony patting/brushing sessions are often available too.
One of my abiding memories is when we re-opened after covid and had riders back for meet the pony sessions and to update their assessments how many parents/carers said the riders were too excited to sleep the night before and how many buried their faces in their favourite ponies mane and cried they had missed them so much.

I don't know about the other stuff but curious that you have discounted Riding for the Disabled out of hand without actually doing any research at all?

Riders are matched with very steady horses, usually pretty 'short', chunky small cobs/big ponies - they are supported in EVERY way, so sometimes an able bodied rider behind them, and walkers either side holding onto knees/lower leg, plus someone leading the horse.

He stands more chance of injury in your car than on an RDA horse (as I doubt there are up to three people supporting him plus helmet and body protector in your car), but everything in life involves a certain element of risk - how far do you go down that route before he can do nothing at all?

The grim truth is, there isn't much for disability of any kind, and even less as we become adults.

Meeting the needs of a huge range of people with disabilities at the same time, in one club/activity, is damn near impossible, so trying to find activities that include everyone... pissing in the wind there, if there is something, chances are it's not something your DS is interested in anyway.

In some cases whilst inclusion within main-stream seems like the gold standard, it is just not possible and fighting against that isn't going to help your son right now.

Fighting for our rights - well we'd all like not to have to do that! (It's also the Equality Act you need to look at, it replaced the Disability Discrimination Act in 2010).

Be a bit more open minded about what he can do, where, with whom - don't narrow the options further by discounting things out of hand without research.

Be prepared to fight for it - yeah, we shouldn't have to but... we do.

Take the opportunities that are there, you'll be better off on the train pissing out than running down the platform trying to piss in!

There was loads I didn't know that I've learned reading through this thread. Seems like a difficult situation for the children and parents dealing with this situation and you have my sympathy for having to struggle as much as you do to get your DC included.

Not sure what the answer is but hope that society is moving in the right direction and that it improves at some point.

Thanks @RollerGirl7 glad it was interesting 😊

I get what you mean OP. My cousin is similar, he couldn't access mainstream education but the provision he was indeed fortunate to get wasn't overly suited either. He was with children who had much greater needs, and it meant he didn't really have anyone to socialise with and the teaching was very much above his understanding so he didn't really thrive.

Very lucky around here though in that the college had a fantastic course in which he made some great friends and was a much better balance between learning and socialising.

Also agree about clubs, there is a martial arts academy who provide lessons to those who require additional support for various reasons, but it's not accessible due to the price really. Understandable they charge more as they require more staff, but it's just a further disadvantage for many.

Provision is indeed patchy and there isn't much in between mainstream and requires a lot of support and additional care. For those who would be able to access clubs etc but with additional support there also aren't many opportunities for this.

Not suggesting it's a box of roses for any children or adults with disabilities, learning needs or anything else though- funding and support is lacking across the board sadly.

Sorry @Swimmingagainstthewide and others if I’ve upset you with my flippant comment about the riding. I found it grimly funny on first reading, but I’m not discounting the activity and what you describe sounds lovely from the point of view of DC’s interaction with the horses. We actually looked into riding twice in the past through funded schemes but were talked out of it because it was hugely expensive to the LA and DC was considered able to access cheaper stuff. But we’ve moved area since and time has passed so I’m genuinely grateful for the recommendation and will look into it again.

To follow up on the RDA, horse riding is immensely good for strengthening core muscles. I would highly recommend going for a look/trial.

To echo a pp, I was amazed at the amount of communication DS2 needed to use during RDA lessons: he had to listen to the instructor and physically convey the command to the horse. It was great for his receptive communication.

@AmericasfavoritefightingFrenchman have you heard of Ros Blackburn? She has ASD, but you voice similar arguments to her.

This is another issue - the way most provision is for LD lumped together with ASD. Just because lots of people have both.

So a young person who is very, very slow to learn, but who has totally normal emotional reactions, and no ASD behavioural issues, is lumped in with people with severely abnormal behaviours and emotional interactions.

The LD people don't get much chance to make friends with people who match their profile in terms of "normal" behaviour and emotions.

(Sorry if the word 'normal' offends, can't think how else to explain)

It's really hard and definitely all clubs or activities are not inclusive. Really feel for you. I don't have any answers but I hope you find some support out there and fun stuff for you and your child.

Sorry to hear how challenging it is to see inclusion in social spaces.

Our local GAA football club (Ireland) set up an All Stars programme - they provide 1:1 support where needed and aim to be a space where all children up to teen years can enjoy sports/social events etc.

There is no criteria just open to all - several families I know found it great as all the family could attend and engage with the social elements.

There is local litter picking - tidy town groups, etc that are open to all, supported swimming lessons, and riding for those with additional needs, pitch and putt run one to one supports, local bowling alley does "quite nights" which have young staff give a hand.

We are in an area where there are several specialist schools so that shapes our community. Being a smaller country provision is very patchy, but tends to be more inclusive as numbers dictate it needs to be to secure funding etc.