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?

On radio 5l this morning the first ever black professor at Cambridge was on. He didn't speak at all until 11 and had gdd. I felt very annoyed at his assumptions but also he had a point that society writes off these children with global development delay assuming they will have ld but he obviously is very very clever.

He talked about high self esteem being instilled from parents. It was quite interesting as I've never heard of an academic catch up like that before. Also Dr dance couldn't read and write until after age 18 and is now a professor.

So it does seem that learning can come much later even with children who were identified as very low in.

Not to dismiss the fact many do not, just upthread said there are no examples of gdd done well or ld.

Congratulations to Prof Arday. Cambridge is a fascinating place from a point of view of education, SEND and deprivation, never mind the prestige of his new post, so hopefully he will enjoy his time there.

I didn’t hear the interview, but if he did make a point about writing off children with GDD, assuming learning disability, then it sounds like he is also in the camp of defining autism over against learning disability. Where does it leave the children who do, actually, have a learning disability? If my DC doesn’t actually ever catch up; isn’t in fact very very clever in a way that’s hard to see - does my DC deserve to be written off?

I do hear you about the need to argue your case. Sometimes I wonder what the trick is- I’m pretty well educated and I make a pretty strong argument and I get pushed back over and over.

The Scottish system of joined up health oversight sounds pretty sensible. Unfortunately here learning disability doesn’t seem to qualify as a health need. We get told a lot that DC’s ability is ‘in line with overall development’ - which feels a lot like they are saying DC is a bit crap at everything and so they won’t bother to help.

It sounds like you did really well for your DC @JustKeepBuilding. I find it hard to believe, as I am told, that such a level of provision would simply have no benefit for my DC. Thanks for sharing.

All DC are individual, but if you have been told that by anyone connected to the LA &/or NHS I would request an early review of the EHCP in order to try to get the right of appeal and seek independent assessments. Sadly, many LA & NHS assessments for the EHCP process are lacking. Independent assessments are more comprehensive, detailed, specified and quantified than the vast majority of LA reports.

I think the trick of arguing your case comes from knowing what you need and why. Otherwise you are just arguing for something please. Its incredibly hard to know what you need and why unless you get one good professional to help guide you. Noone helps and there are things you dont even know exist.

Absolutely.
We've found just understanding terms and processes a massive headache. It leaves us one step behind.
DD's SLT hours were cut year after year and I'd have to go back and question them. Now she's been discharged (rightly) and instead given some MH intervention at school - but I didn't know that therapy existed until it was flagged by her teachers.
We've been reliant on them for help. Her county case worker changes a couple of times a year so there is no continuity.

Unfortunately here learning disability doesn’t seem to qualify as a health need. We get told a lot that DC’s ability is ‘in line with overall development’ - which feels a lot like they are saying DC is a bit crap at everything and so they won’t bother to help.

While a learning disability might not qualify as a health issue, I’d argue not attending to the learning disability will give rise to health issues. Being able to be understood and understand others is a huge need, and SALT cover so much more. It was SALT who identified the fracturing of my DDs processing - understanding how to explain things to her has massively helped her cope with day to day life. We found she had a hearing impairment that impacted her communication, language skills and literacy, just knowing she couldn’t hear properly has made a difference because she knows she’s missing something and can ask folk to repeat etc, and it turns out her hearing can be fully restored with surgery. My concerns about her hearing were written off as me not accepting her disability - I had to argue her into paediatric audiology who quickly found out what was going on.

I agree that knowing what you want and why is important- I’ve long stopped saying “she needs some kind of help with X”, I do a tonne of research and explain exactly what I think she needs and why. And then I stand my ground.

I also found having a specialist tutor has been incredibly helpful, she helps my DD learn how to learn in a way that she can follow, which builds her confidence. Her reading age has gone from 6 to 10 in 2 years, and her ability to explain her own thoughts and experiences has increased hugely as a result.

Its very hard but spending time on one issue, arguing that and then moving on to the next thing can work well. I also found that once I had one service on board others were more prepared to listen to me.

I agree that if I knew what I wanted and why I could make a better argument. You are right though that it is hard to know what would be useful. I’m sure there are things that might help that I can’t even imagine.

@Spendonsend is right that one good professional helping would make a big difference.

I remember early on we asked the paediatrician- that same one- for help with sleeping. DC has always spent more time in the night awake than asleep. Paediatrician said that it was our fault as we had failed with sleep training as a baby, and we must put a stair gate on the door, take all toys from the room and unscrew the lightbulbs so that DC learned nighttime was a boring time for sleep. She said DC would scream and cry for attention a lot but we must ignore DC as we had caused the problem.

We were still at the point of assuming the paediatrician had good advice and we did it. DC never cried. DC is mostly well behaved and keen to be good. But we had smearing every night for months. Poor DC was utterly bored and playing with what was available. It only stopped when we put the toys and the light back.

DC still doesn’t sleep at night and I have no clue what to ask for that might help.

I think what I mean is, if we had access to a professional who cared they could presumably make educated suggestions about available support. But we struggle on.

@Jellycatspyjamas you make a really sensible argument. How do you find the time for all the research? God I worry all the time about the ways I’m letting DC down by not knowing and doing more. And no body else gives a stuff. Do you have the tutor because your DD is not in school full time?

For sleep, ask for a referral to a specialist sleep clinic such as the one at Evelina or GOSH.

Sadly parents who know the system and can advocate for their DC get better support. It really shouldn’t be that way.

You don’t need to know what provision is necessary. If you seek independent assessment (assuming the LA ones you have are rubbish) they will inform what provision is required.

Paediatrician said that it was our fault as we had failed with sleep training as a baby, and we must put a stair gate on the door, take all toys from the room and unscrew the lightbulbs so that DC learned nighttime was a boring time for sleep. She said DC would scream and cry for attention a lot but we must ignore DC as we had caused the problem.

Thats shockingly bad advice bordering on abusive - children need to feel safe and secure to sleep. Which is what I mean, yes professionals can give advice but as a parent you need to be able to discern the good from the bad. Someone telling me to lock my child in their bedroom with not so much as a lightbulb would be getting short shrift from me.

My DD has a tutor privately to supplement her school attendance because the school can’t give her the learning strategies that work for her.

Well but this is the thing. Parents of DC like ours are in a vulnerable position too. And if someone is in a position of knowledge and authority it is natural to expect them to be acting in good faith. That’s kind of the basis of the relationship working, until proven otherwise.

It makes me feel- and I expect often look-crazy to be always suspicious of the motives and advice of the people who are supposedly there to support our family.

So yes I regret taking her advice but it was presented as a cry-it-out type strategy, which lots of people do after all. It’s only with the benefit of hindsight and the knowledge of the paediatrician’s other terrible opinions that I would be able to outright dismiss it.

I think there is also a sense of being made to jump through hoops so a sort of, yes I’ll try your strategy for a while so that it can fail and we can move on to the real help.

Parents of DC like ours are in a vulnerable position too. And if someone is in a position of knowledge and authority it is natural to expect them to be acting in good faith.

Absolutely, vulnerable and usually at their wits end trying to resolve the issues with their child. It’s awful trying to get the help your child needs, too many conflicting opinions and little actual help.

I’ve been meaning to come back and say, thanks for explaining about your club @JusteanBiscuits It sounds really well thought through and I’m not surprised you have a waiting list 😊 Hopefully others can learn from the model you’ve developed.

Hi @LivingDeadGirlUK, thanks for sharing your experience. Do I take it you were a ‘disabled rider’ for want of a better term? I’m sorry to hear that it didn’t translate into adulthood for you. Was it an unwillingness to keep making adaptations once you were an adult?

This is one of the concerns I have about RDA type activities, and one of the reservations about clubs aimed at learning disabilities being the solution - do they allow for building relationships that can continue into adulthood?

@NoCatsToday you said finding a commonality with a teen or adult who is significantly different is harder and thus the majority don’t bother

I think you’re sadly right. I hear a lot, even on this thread, the comment ‘Well I don’t have disabled friends so why should I expect my kids to befriend disabled kids.’ And even ‘Lafayette I bet you don’t have any disabled friends so how can you expect people to spend time with your DC.’

A couple of things to say there- there are actually more opportunities now for kids in mainstream school to meet kids like my DC. That didn’t happen so much when I was in school. So let’s embrace the opportunity. Kids at my DC’s mainstream primary actually did that quite well while it lasted.

Secondly, since when should we treat any kid according to what we think their parent has deserved?? As it happens my friendship group over the last 4 decades has included two or three wheelchair users, a couple of folk with CP, a few with chronic illnesses, some folk with visual impairment, many with ASD, and one lady with a significant learning disability. Some are still friends now, one I married. Have I been ‘good’ enough to earn friends for my DC??! What a nonsensical question. To be honest I feel grubby even writing that, it’s not how I think, these people are just friends because they are nice people and I’ve enjoyed their company. I’m pretty sure they’ve enjoyed mine. My DC is also a nice person, as it happens, and can be great company.

There is something to be said for having the support of your peers - yes I think that’s true too. It sounds nice. Part of the difficulty for my DC is that the potential peer group at school are inclined to define themselves against my DC.

Yes it's really hard, true friends need to connect so it needs to be something he can be at the same level at so they are not humouring him but wanting to spend time together.

I agree about connection but I’m a bit hesitant about being ‘at the same level’. I’m not sure if that necessary or even possible

I got a job for this reason , no school run and his friends grew out if him!

I don't get what you means about mixing with the sn school though ? They are the same parents as you

One of the students I supported was described as a "class mascot" by his form tutor during parents' evening. The parent was dreadfully upset and asked me what I thought. The (newly qualified ) teacher was trying to convey that the other NT students liked having him in their class. However, the mother only wanted her son to have friends, not be fetishized in this way.

Later on in the year, another teacher described her son as being " a loser". When probed, he meant that in a situation of bullying, her son would always lose out. However, we all know the main usage of that word in a school setting with teenagers. This was a senior teacher in charge of behaviour and once again, meant in good faith (believe it or not).

I suspect that they don't really have the vocabulary, the empathy or the concern needed for SN students to be fully supported and thrive and they wont make it priority.

Yes I was a disabled rider, I'm sight impaired. I really enjoyed it and tried to talk to other kids at school who rode but they were really snooty because I didn't have my own pony. I tried to get part time work at stables so I could ride but it never came to anything and ultimately without being able to drive I couldn't persue it further afield. Possibly just a few bad experiences and bad luck but it seemed a shame!

That does seem like a real shame @LivingDeadGirlUK. The snootiness - Im so sorry the other kids were like that and also not very surprised. I think there is a lot to do with class at play for anything to do with horses because ultimately it’s a really expensive hobby.