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?

Anything that educates or trains, including therapies, is educational provision, rather than health provision, so should be in F. Therefore, if the NHS can’t or won’t provide the provision the LA must. If they don’t and the provision is detailed, specified and quantified you can force them to, via judicial review if necessary. You may have to appeal to get watertight provision in F in the first place though. It is harder to enforce health provision in G, but not impossible.

"Would I be correct in thinking that previously in days gone by, this disability would have been described as "having the mental age of a x year old"?"

I sometimes, as a quick way of explaining to people, say my son has the understanding similar to a 2 year old with autism on top.
I don't like it when people say things like "like a 2 year old" because he has 14 more years of lived experience and is an almost adult who deserves the same dignity and respect as other 16 year olds.

Thanks @MissHoneysHappyEnding

I think you make a really good point about ‘new inclusivity’. It seems to be all about Paralympians and war vets and tech geniuses and how ‘inspiring’ they can be, which is sickly and a bit infantilising even to some of the folks it includes- but what it does actually is make inclusion about what you can bring to the table. Prove your worth in some slightly non-standard way.

I understand your fears for your daughter. God it’s so scary.

Hi OP, I work in a related field. I recently started a thread about a dilemma facing one of my students and while some responses were brilliant, there was always that one poster who was piling on the nasty comments about complaining parents being liars or de3finitely having vulnerabilities themselves. It is an awful situation because primary support is much improved but it falls off a cliff beyond secondary age. The time and resources do not seem to be there and there is less compassion for students going through puberty compared to cute, little infants school kids.

I think that despite the absolute determination of some ‘not to understand’ this has been one of the most thoughtful and sensitive threads I’ve read for ages.

I don’t want to take away from your thread OP, but I have a relative with autism, no LDs but very vulnerable in all sorts of ways.

I have found it at various times exhausting, upsetting, lonely and isolating because there seems to be so little understanding of the grey space that exists between fully functioning adult and adult needing support. Like you, I’ve had people fire suggestions at me that are well meaning but aren’t remotely appropriate or to be honest, helpful. The last thing I want is to denigrate peoples kindly meant suggestions but the Riding For Disabled is a really good example of this. You’re posting about a position of isolation emotionally as well as socially and someone comes along and with one suggestion thinks they’ve somehow solved all the ills and prejudices of society! It doesn’t mean it’s a ‘bad’ suggestion but it’s not (I don’t think) what you were getting at.

And the posts above re ‘what can you bring to the table’ in a way that others wouldn’t be expected to adhere to is so true.

For inclusion to work in the way you desire it has to be systemic and we're just not there as a society.

As they reach their teens children gravitate towards social groups that frequently look like them from an academic and social perspective. These teens grow up to become adults like us who largely have friendship groups, connections and activities with the these things in common. Finding a commonality with a teen or adult who is significantly different is harder and thus the majority don't bother. I'm not saying it is right but it is what happens.

Up thread you dismissed the focus on clubs as a means of inclusion OP. I think this is a mistake. It is when teens and adults do things together in club scenarios that they find commonalities that go beyond class, race or academic ability. You can't change society overnight but small changes will make a difference to you and your DC.

FWIW my DC has ASD. He's 16 and at a mainstream school but has no neurotypical friends. He hangs out with the other ASD kids and they celebrate their differences with nicknames etc. He seems happy. There is something to be said for having the support of your peers.

Would I be correct in thinking that previously in days gone by, this disability would have been described as "having the mental age of a x year old"?

I think it would have been but in my DDs case it wouldn’t help much because while she is developmentally delayed it’s not consistent across all parts of her development, some things she can manage in an age appropriate way, some things she needs a bit of scaffolding for and other things she can’t manage at all. The real problem is adults giving her instructions and thinking she’s heard and understood so leaving her to it. They then get irritated when she doesn’t manage.

My DD needs to be spoken to in short sentences, if they do that she can process information well and retain it, when they don’t the whole thing becomes scattered in her brain and she doesn’t understand what they mean. Of course she’s adept now at masking which means she’ll try to work out what s been said and figure it out from there, which means she invariably doesn’t quite get things right. Workers then think she’s being willfully difficult, treat it as a behavioural issue and shame her. It’s the difference between saying “go to the changing room, get your gym shoes out of your bag and put them on” and “put your gym shoes on”. She can follow the second instruction but the first, while clear, is too long. What she will remember is something like “go, bag, put on” so will come back with her gym bag. Despite repeatedly explaining how to direct my DD workers continuously forget to keep instructions short and direct.

What I’d like is for there to be a much better understanding of the complexities that encompass learning disabilities and processing difficulties and for people to trust that I as her parent know how to help her understand what’s needed of her. To know that one size doesn’t fit all and that different strategies work for different children. While my DD has complex needs it would actually be relatively easy to make activities inclusive for her.

My experience with my students is that days out venues such as museums do seem to get it a lot and make provisions if they are asked. However, the support is lacking in their day to day learning experience and it just seems like a divergent path with their peers who would already have started accepting them when the scaffolding was in place to facilitate it during the early years.
Therefore, they either end up marginalized and isolated or are expected to slot into a special provision which does not work for them at all and at much greater expense.

Thanks @Notonthestairs for your thoughtful post.

I think In practical terms you may well be right about special needs clubs bring the best option for DC to socialise- I’m still at the point of being really heartbroken and angry that this further retreat from mainstream life is required.

I completely empathise with your description of accepting the move to specialist provision. We did that in Year 4 and we were suddenly hearing things like ‘some of our graduates know how to make their own lunch’ and the shift in expectations and aspirations was brutal. DC is actually now at a different, Y7-Y11 placement which is a much better fit. We are so impressed with them. But still…

I didn’t complain. I wish to God I had. One difficulty, which you will know perhaps, caring for a child with LD, is that the discriminatory arsehole on the other side of the discussion only has to say enough to hint at not wanting your child around, to win the conversation. No parent is going to risk putting a child who can’t express their own needs in a situation where they aren’t wanted. So by being angry with our temerity at turning up for the tour, that headmistress made sure in 30 seconds that we wouldn’t actually trust her school to care for our child.

Thanks for understanding @Spendonsend. I’m sorry you’ve had that dreadful experience with schools too.

You’re right @ColonelSpondleClagnut and I think that can still be a helpful shorthand. It was more helpful, I think, when DC was younger. Now it needs to be more nuanced, and I’m not honestly sure in all circumstances. DC likes to play in ways that are age-appropriate to a five year old, but as for understanding and world-view, I think they’re a bit more mature if only due to having experienced more…

Thanks @HedgeRin , and I’m so sorry about those experiences with the nurseries- it’s just awful what they can get away with.

Thanks for your patience @JustKeepBuilding. I will have another look at this.

When you look into it, don’t trust what the LA or NHS tell you, they will tell you what they want you to know and their unlawful policies. Have a look at IPSEA and SOSSEN instead.

I have 2 DC who have therapies and other provision via their EHCPs that they wouldn’t get, or wouldn’t get to the same level/duration/frequency, via the normal routes.

I see yes, and you wouldn't want them limited to only activities that would be suitable for a five year old either.

I know you're not necessarily looking for clubs or groups, but something like Games Workshop, (Warhammer, D&D) or another tabletop gaming group might be or become suitable. If you have a local gaming cafe they are often a lovely group of people, and can have a wide range of games going on ranging from full on multi session games, to Snap and Snakes and Ladders. Oh and of course Pokémon and other card based games!

You make a very good point. I can’t believe how easily I still fall back into expecting the LA to make sense. Of course when I go in expecting rubbish from them, they act like I must be deranged to be so suspicious. I think a person just gets tired, and wants the other party to speak plainly, after a while. It’s hard to describe how utterly weary I am sometimes.

No pressure to give details that are too personal, but I’d be interested to know more about the type and frequency of therapy you managed to secure. For instance, because DC can say the beginnings of words when prompted, it has been decided that SALT is not required to correct the fact that DC usually verbalises words starting at the second syllable - ‘puter’ for ‘computer’ etc. I don’t know how this is ever supposed to improve.

Equally if a child with CP struggled as much to fasten buttons, flush the toilet etc there would be a lot of physio and OT and eventually tools and workarounds. But I am just told to give lots of opportunities to practise.

Thanks that’s a nice suggestion 😊

A pp was scornful about the possibility of my DC ‘tagging along’ to youth group and not understanding Cluedo. But actually DC can play games like Uno and Carcasonne- not very strategically but with a lot of enjoyment of the social aspect of the game and a great deal of pleasure at a good final score.

I did this as a child and it was an incredibly lovely experience, there was a really wide range of disabilities there too. Unfortunately it didn't translate to adulthood as I found the wider 'horsey' community incredibly unwelcoming!

Another 'sport' I really enjoyed was trampolining, there is no competitive team element but lots of time to natter while waiting for your turn.

@onetimenamec you are quite right that we are more accepting of ‘cute little kids’ with differences. I’m not sure why this is. I suppose the gap between expected ability and actual ability is smaller and that helps. You can also still hope or imagine that actually this kid will grow up to be just fine after a tricky start. And unwanted behaviours can be contained more easily.

You also make an interesting point that all the work done integrating the child with their peers at a young, impressionable stage is lost. DC was ultimately very welcome at their mainstream primary and I think the staff and other parents were genuinely very sorry to see us go. I think they were proud of themselves to have got so much right, and they deserved to be. But all those potential relationships are broken now, and that’s another 30 kids who will grow up ‘not being friends with anyone with a learning disability’ and probably feeling reluctant to try as adults.

Equally if a child with CP struggled as much to fasten buttons, flush the toilet etc there would be a lot of physio and OT and eventually tools and workarounds. But I am just told to give lots of opportunities to practise.

I think the reality is there’s minimal support for any kind of disability unless you really argue your case, I’ve had meetings with agencies that have felt like I’m defending my Masters such was the need to evidence the supports I knew would help my DD.

Do you have access to community paediatrics? My DD was referred about 3 years ago and they have been fantastic in pulling together SALT, OT and CAMHS along with other health provision. Basically they met with my DD and I, and we had a full consultation covering her physical health needs, social, cognitive and emotional needs and came up with a plan. Community Paeds made all the referrals and coordinated various specialties through health - she has an annual review where we check progress with the various specialists and identify further supports needed.

It means one health professional has oversight of my DDs care and can identify her needs overall. She’s just been referred back to OT for support with personal care, for example.

Im in Scotland so I don’t know if this is available in the rest of the UK but worth exploring just in case. We don’t have the ECHP system here so having everything pulled together in one place in the health system is a godsend.

Both have weekly SALT, ‘normal’ OT, SIOT and clinical psychologist sessions. 1 has physio twice a week. The other has physio 3 times a week, rebound therapy once a week, and swimming (a session with mix of swimming, aqua-therapy and hydrotherapy but in a normal temp pool for medical reasons) once. Both also have smaller bits of provision/therapeutic input. They only have this level of provision because it is in their EHCPs.

SALT is about far mare than saying the beginnings of words when prompted and the scope of OT is vast. My DS’s who have SALT provision in their EHCPs have SALT needs, but can both speak, albeit they have selective mutism.

Thanks so much @Owlatnighttime I see that you really do get it. I’m so sorry about the struggle to support your relative. In many ways vulnerable is just vulnerable and the exhaustion and isolation are no different for the family.

Interestingly enough, some of DC’s teachers have started to say we could explore assessment for ASD. It was written off by the lovely paediatrician as irrelevant either way, given that DC’s experience would be defined, she expected, by the learning disability.

I’m not sure what I think of that. An additional diagnosis of ASD would let us into that “club” but it might not be wise to try to join in, given that if anyone talks about ‘autism as a superpower’ I mostly want to slap them with a wet fish. Good for them, I suppose, with their superpowers, but it puts us back at what we can bring to the table. And most of my friends’ kids with ASD are too severely affected to have a ‘superpower’ anyway- rather like my DC.

Agree this is such a thought provoking thread. I'm mulling over views and experiences and think I will be for days to come. To be honest I'd don't think it's ever that far from my mind - I'll never know whether I made the right choices or pushed hard enough.

I think the difference in experience for DD came preteen - by age 10 she was far behind. Social nuances (currency in preteens and beyond) flew over her head. Interests diverged. Many children continued to be lovely and supportive but it only takes a few. And she noticed her differences and tried to make herself fit in. But it goes beyond eccentric interests.

The 7 form intake of our local schools probably would have meant she'd have found a friend somewhere in the deluge but the cost to her to find that would have been high.

Friendships form through shared interests and (in teen years) mirrored behaviour. She would have willingly altered herself to fit in and suppressed needs but the pressure would have been tremendous.

I see the same in my older NT kids - they are just beginning to assert their differences (whilst maintaining standard issue for our area teen boy haircuts, heaven forbid they stick out).

But it's a loss all round.

Gah. I'd like to use some good old fashioned Anglo Saxon terms here.

Speaking as a (board) gamer myself, a lot of us do it for the fun and the social interaction - although admittedly many of us are a bit awkward with the social side. And because there's so many games and new players, learning and picking up rules is something that everyone has to go through. Players have to develop patience and enthusiasm for explaining games otherwise no one would have anyone to play with if you see what I mean.
If you have a local gaming cafe I would highly recommend having a look. 🙂

And I wouldn't discount Youth Club type places either. Teenagers can be right nobs, but they can also be some of the most caring and inclusive groups of people. Whilst giving off a general air of "whatever" obviously. 😬