To think there are not enough resources for all disabled children?

[Packofsense]

AIBU to believe that the vast majority of resources for disabled children, from diagnosis to DLA to clubs for SEND children, to holiday clubs for SEND and special school places, as well as online support groups or RL support groups for parents are for autism or ADHD?

I accept that more people are being diagnosed now which is welcome news, but I'm just wondering why other disabilities aren't seeing similar levels of increased diagnosis and support?
My LO has limited mobility due to CP and I have sought support via groups in RL as well as online, yet I find that there are no groups specifically for CP in RL, and very few online. I don't know any other parents whose children have CP or similar disabilities.
In my quest for support, I have joined a number of online groups for disabled children and their parents and predominantly, the groups are full of children on the pathway to ASC or ADHD and therefore quite often, I don't feel we have the same struggles.
For example, my LO has never attended a mainstream school, will always need mobility aids and physically will always need support, which may mean supported living when DH and myself can no longer offer the support needed.
In contrast, other parents in these groups have the challenge of their DC having no awareness of danger and running into roads etc, yet there is hope, I presume, that their DC will learn ways to manage these impulses? Otherwise we may have adults in a few years who will be running into roads? This difference matters because there is little common ground.
This is just one example.
With the increasing levels of diagnosis, why doesnt this include more diagnoses of children with disabilities that aren't ASC or ADHD?
Why are all the support groups predominantly made up of parents with DC with ASC/ADHD?
I understand more children are being diagnosed, but why only ASC/ADHD?
Why aren't there much more resources available to reflect the increase in children being diagnosed with ASC/ADHD?
Why are the resources available being spread so thinly to the point where there aren't enough to go around?
My LO used to attend a club for disabled children, and this gave me a couple of hours of respite, but we can't use the club anymore because my LO was scared of the other children after being pushed over and bitten/struck a number of times.
I completely understand all disabled children need support but why aren't we increasing provision to cater for all disabled children?
I can't take my LO to disability friendly sessions anywhere, even when they are for limited mobility because she is afraid of being pushed over/bitten or struck and everywhere I have tried is predominantly full of children with ASC/ADHD with mobility problems which usually means a lack of danger awareness rather than a physical inability to move.
Maybe I'm just having a bad day after my LO was sent home from school today after having hair ripped out by a child having a meltdown.
I have spoken to staff over and over. Today they simply repeated that the other child has ASC and unfortunately is too quick and nimble to always prevent from getting to my child.
I feel like my LO is suffering because there aren't enough school places or resources available to cater for all of the children who need support.
In order to keep my child safe, I must withdraw from the SEND community I should seek support from and that is supposed to cater for and understand disabled DC, yet appears to cater mainly for ASC and ADHD.
Feeling quite defeated and sad this evening.

All this victim and aggressor stuff is ridiculous. We are talking about disabled children whose support needs are not being met in their school environment.

Describing the children in this way misdirects attention away from the actual problem, which is a lack of adequate provision to meet children’s needs.

Can’t say I’m surprised that the OP hasn’t come back. Wind em up and watch em go. Especially when the topic has to do with children with disabilities/additional needs

Yes aggression is fairly common. There’s nothing wrong with saying so and it doesn’t mean the aggressor is to blame or can stop it or the victim is any less of a victim. Pretending that it doesn’t exist or that the person being hurt isn’t a victim is dreadful.

I get the frustration with special schools not being able to cope with some DC behaviour. My FS attended a special school and was completely overlooked because he was quiet and didn't have these meltdowns. He loves learning but used to get frustrated because some children's behaviour was so poor the teacher stopped teaching to deal with the meltdowns but they happened so often little learning happened. We found once he got to college he flourished. He got more done in one year than 3 previous years. Have you tried cricket for the disabled? The Lord Taverner's run a programme that is free to attend and a lot of DC in wheelchairs go. They have county teams called Super 1's and weeks away too.

The reason there seems to be a rise in support groups is because there has been a rise in diagnosis. Simply due to the fact its been under or mis diagnosed for decades. There aren't many other conditions that are underdiagnosed to this level, so I wouldn't expect there to be a rise in diagnosis of other conditions. But the huge spike in ppl getting diagnosed has led to a huge demand for services.

People don't understand the condition, they don't know how to cope and it is still a very stigmatised set of conditions. Where people don't really see it as a as serious as other disabilities, this also creates a huge need for people to talk to people that do understand and don't judge.
(Im going to make it clear that the rest of this post is to educate not insult, as I genuinely believe you meant no offence when you wrote this, but it illustrates the point I will go on to make, and hopefully gives some insight into your question)

You yourself, without even realising, totally trivialised the condition (adhd specifically)as being not as bad as the disability your child has, and therefore your struggles as a parent of a disabled child were not comparable, when you said

"In contrast, other parents in these groups have the challenge of their DC having no awareness of danger and running into roads etc, yet there is hope, I presume, that their DC will learn ways to manage these impulses? Otherwise we may have adults in a few years who will be running into roads? This difference matters because there is little common ground"

What is it about ADHD in particular that makes people certain that it can't 'be dealt with' 'get better' 'just learn to not be so impulsive' 'just try harder'

No, they do not just figure out a way to deal with it, and yes, you do have and will have adults with adhd doing the equivalent of 'running into roads' figuratively and literally!! but because the majority of people think this way, that is why there are so many resources on offer, and so much of a fuss being made to raise awareness, because I'm sure you have never had someone infer that your child would surely just get over their disability as they got older and wouldn't need as much help as an adult.

The fact that there is a total lack of support for ALL disabilities is not something I would argue with at all, BUT picking on the neurodivergent population who up until now have had next to nothing, because they are suddenly being offered the support that should have always been available based on it apparently not being 'that serious', can be very harmful. This group of people are having to prove they even have a real disability, whilst simultaneously defending their diagnosis and desperately trying to navigate school ot work in a world that mostly still thinks, you could do it if you just trued hard enough. Trust me, there is no where near enough support for these people

Every person with a disability deserves support, every parent of a disabled child deserves support, but no disability is above or more worthy of support than any other. And adhd is one of the only conditions where certain people will tell you it doesn't even exist, whilst parents are judged as just being bad parents.

What other disability can you name where people will say there's nothing wrong with the child. The parents just don't discipline them properly?

Support for ADHD is also very very complex due to it being a spectrum disorder, so there's no one size fits all place to go. And pkease excuse the crude analogy here, but its just to illustrate a point For example, if you are paralysed from the waist down, you will be a wheelchair user, you can join a support group where EVERYONE is a wheelchair user, you will all have this in common and will be aware of the challenges you ALL face-theres no ifs or buts about not being able to stand or walk, you can or you can't. There is no such definite criteria for spectrum disorders because everyone's level of disability and need will be monumentally different, this is another reason there are so many groups because one size does not fit all. I hope this gave a little insight into this 'phenomenon' and once again, educate, not insult is ALWAYS my intention. And if anything I said came across as upsetting negatively impacted you in any way, I assure you it was not my intention and apologise.

I actually agree with you OP.

There was an article a few months back about disabled benefits for teens doubling or trebling due to Autism and ADHD and outpacing disabled benefit claims in other age categories.

But having just helped a friend write a complaint about not receiving an official ASD assessment by her local borough SEND department after a three and a half year wait, (the child has perhaps the most severe case of ASD I have ever seen it even affects their ability to coordinate walking ) and having read the NICE guidelines for education assessment for disabled children/ children with SEN, I must say I see it as a fantasy document when compared with the reality. And I have a nephew and niece with ADHD, quite badly affected, both of them.

But still I can completely understand your point of view.

I agree that there ought to be some way of tiering disabled support for children based on the actual way it affects their lives more. But overall there really isn't enough funding or support full stop. But yes, I agree you ought to be able to get more support.

I was going to type a long, considered post. But I just can't muster the energy. I have 3 children with ASD. Range from complex needs, LD & physical mobility difficulties, to intelligent but find academics hard due to language difficulties, to super academic but in burnout. All 3 need specialist education. The 'most disabled' one is the only one who has stayed in state education throughout, because there was provision for her. The other two require independent providers because there is no state provision that can meet their needs.

In the 18 years I've had DD1, there has never been a support group that 'fits' DD1. She has physical needs that most kids with her level of LD don't have, she's more verbal than most kids with her level of LD, but less socially able, and it creates a hot mess in terms of provision, which is why 3 education placements have failed.

With better healthcare & advice & vaccination etc the number of children being born with & living with physical disabilities has gone down. That's not much to be thankful for of you are struggling with a physically disabled child but I don't think holding a grudge over parents with autistic children is helpful.
There's more parents with autistic children because more children have autism & fewer with disability from polio, measles, rickets, spina bifida etc.

And very few will be accessing support.

It’s all shit for all kids with SEN really, but I do get what you’re saying. The SEN Facebook groups I’m on are predominantly parents of children with ASD. It’s just the most prevalent disability 🤷🏻‍♀️
Start a group? I started a SEN one for my area as there was nothing and it’s been great and very useful. Post about it in groups like SEND reform and I’m sure you’ll find like-minded members.

We've also got to remember that several disabilities are screened for and parents are offered termination, so those conditions will be seen less in our SEN communities. Then about half of cerebral palsy is linked to prematurity, so those children are immediately known about and therefore those parents aren't having to fight to get their child's disability diagnosed.

DD1 has a brain malformation. I was saying from a very early age that I thought something was 'wrong' (I'm talking weeks) and I was told I was paranoid, 'reading the textbooks', 'being a nurse, not a mother', etc. This went on until she was 20 months, where she was found to have hypermobile ankles. Still no paeds. 2½, I took her to preschool, and they said she was behind. No paeds. Still falling over 'inner ear infection', 'unsupportive sandals'. Finally, sent to the hospital when preschool saw her pole axe away from the play dough table. Global Developmental Delay, epilepsy. The paed still assured me the CT and MRI would be normal. CT was. MRI wasn't.

Developmental conditions are hard to get investigated. She was 15 before her ASD was diagnosed. Now a wheelchair user too. That took about 10 years to get sorted.

So many good points made here. Sorry to hear about your diagnosis battles, I can't totally relate and empathise. XxX

"I was going to type a long, considered post. But I just can't muster the energy"
Firstly,
You need a hug? What am I talking about, of course you need a hug...🤗🤗

This...🫠 I don't think I've ever resonated with such a simple sentence so much in my life....I think I could have done a good job diagnosing your kids by this sentiment alone!

The kid who's disability 'doesn't fit'-my lord do I get this aswell, it's like the neurodivergent version of a mixed race kid, too white for the black kids and to black for the white kids ( I'm mixed race so I can say that playfully before anyone looses their knickers)

Only some people will know the struggle of one child being simultaneously too disabled and not disabled enough to not qualify or be eligible for a single place that they can go during holidays or after school, and pretty much excludes them from EVERY support system for disabled kids that is in place.

Mum of 2 kids with adhd, asd, dyspraxia and dyslexia, sensory prossing disorders, and joint hypermobility between them...oh and all of the above myself, apart from dyspraxia, but I filled that gap in my CV with 3 autoimmune disorders and a brain hemorrhage, oh and absent father, but now I'm just bragging 😌
Never lose your sense of humour ☺️

All of this is so true and really good points.
Just to mention (because I only realised quite recently) that a lot of physical disabilities are on a spectrum as well. Obviously a wheelchair users support group will have differing other issues and varying levels of being able to stand and walk, but I don't think you meant that - but even with paraplegia, you can be complete or incomplete and actually have a range of different abilities, it's not a can/ can't thing either. Plus powerchairs vs manual, it goes on and on. There's still that horrible game of top trumps as to "who has it worse"

There’s not enough of most things in Britain today:
Nurses
Midwives
Doctors
hospital beds
GP appointments
Teachers
police officers
prison officers
clean rivers
clean seas
the last is endless. Too many years of governments lining their own pockets and not understand how society works. Money wasted and misspent.
Only things I can think they’re not responsible for are insufficient sunshine and my lack of sleep.

Yes, that exactly my point. Or at least it was the point i was trying to make.🫠 A person paralysed from the waist down would not really be able to identify with someone who was paralysed from the neck down-both paralysed, both entirely different needs and obstacles to overcome-so they would likely go to, or benefit from going to 2 different support groups, most people will understand that, and not be upset or feel unfairly treated because there were multiple support options on offer for people suffering with paralysis. Thats good strong level of disability that we can see, and understand so we'll accept any assistance offered to them...BUT if you try and apply the same logic to person with adhd or autism because you can't describe the differences so plainly, people become angered by the fact there are so many for 'them' what about 'us' like you say the disability top trumps is out of control...these neurodivergents aren't even really disabled are they? They look fine to me...probably just want to jump the line at Alton towers and take a mate for free, they don't really 'need' it, let's be honest, plus dont they just figure out a way round it and get over it by adulthood? Not like its lifelong condition like being paralysed is...I mean, aren't we all a bit adhd?

You are a ray of common sense and acceptance light that I'm finding quite rare on this site...thank you for restoring my faith in humanity a little

The biggest thing we don't have enough of in this country is compassion...and I don't think for a second that this is entirely accidental...🤔 but that's a different post altogether 🫠

So we're just changing the definition of the word disabled, from it's original meaning, to something that only applies if you feel a person struggles enough to qualify for the 'title' of disabled?
Just for your reference, the current official definition of the word 'Disabled' is as follows:

disabled

adjective
(of a person) having a physical or mental condition that limits their movements, senses, or activities.

I see no mention of the level of limitation being a pre requisite as to whether this definition applies to a person or not. Nor is there an associated list of conditions it must or can only apply to, so I'm curious as to how you have come to make such a statement?

@est1980 I have great sympathy & compassion for parents who are caring for children with additional needs and I totally agree there are not enough resources. There’s not enough of anything because profit came before people for so many years. We’ve been sold short despite paying direct and indirect taxes day after day, year after year.

OP wonder no more - it’s not other disabled kids taking resources from yours. As for the poster that said nurodiversity is not a disability for their child, that is very good news, for now, that child is working double time for you to have that perception or maybe they are working just a little harder but they are working harder day in and out.

This. Just this...

But I can solve this in a jiffy for anyone who was confused by this-because I certainly was,

There are 2 words, they look very similar, identical in fact, but mean totally different things. For example, Live VS live (I live in England) and live (I prefer live music)

So we have now
Disabled vs disabled

There's the currently accepted definition-which up until now has been the only definition,

adjective
(of a person) having a physical or mental condition that limits their movements, senses, or activities.

BUT due to the rise in neurodiverse people, there now needs to be a second definition, because by the current definition any form of neurodiversity including adhd and autism would definitely be included and classed as a disability.

But this was very insulting to the 'properly disabled' and they want to find another place for the neurodiverse because they aren't really disabled ...are they? We need to amend the definition of the word disabled so the 'pretend disabled' nds can't claim it, in a bid to be treated the same as those with 'real disabilities'
So from what I can gather, the new or additional definition is as follows:

disabled- now a subjective /fluid term, varies from person to person based on how severe someone else* assesses your condition to be, and definitely does not include neurodiversity of any kind.

*this person does not need to be a medical professional or have any real knowledge about the condition. Knowing someone with, or having a friend whos child has the condition, or a relative with the condition does fully qualify you to make this assessment.

Current alternative terms for neurdiverse people being considered include -differently abled, behaviourally challenged, sugar/e number/discipline intolerant, Socially inappropriate, and Gremlins.

I think they're hoping to have settled on one to permanently remove neurodivesity from the 'disabled umbrella" by the end of 2029

Nothing to disagree with here or even anything to add. Think you summed it up nicely

I totally understand the "not disabled enough" label that was discussed the kids are all quite good as "passing" for "normal" in small doses, but nobody ever sees everything it took to get there in the first place. Before Covid I tried really hard to provide "opportunities" for them.

I took them to museums and parks and other places, all of us worked hard every second to manage mostly only looking "naughty" on the really hard days. It meant lots of leaving early, lots of thought, lots of prep and lots of worry. They didn't really enjoy it, I didn't really enjoy it but it felt necessary.

I used to take them to meet ups with a disabled charity, they were always welcomed, they enjoyed it, some of it required less thought, less worry but in that setting, where there are children in wheelchairs with 3:1 adults, children who are completely non verbal and kids with a range of other physical and other disabilities, but the amount of judgement and envy from other parents because they could thank the staff, help with tidying up and even sit on the bench to eat a snack was insane. We got nasty comments from a few parents directly, we got rude comments behind our back and dirty looks frequently. The kids loved it but I found it really hard I got judged to the point I used to take my headphones and wear them with nothing playing because being thought ignorant was easier. Someone told me once "it must be nice to be able to ignore them" I wasn't ignoring them, I knew where they both were and for those sessions they mostly needed me to stay in one place they could see at all times with the bag.

Covid told one she didn't have to make the effort, so if left to her own devices she doesn't leave the house, except for school and any activity her brother attends that he can tempt her with (currently its boxing once a week for an hour, she goes because he is her sparring partner and she can legitamately punch him with no consequences).

One leaves the house for a supported work placement with a different disability charity, he speaks to customers using a script and he responds to other staff with as few words as possible and doesn't initiate conversations with anyone not in our household willingly.

The last one speaks to anyone and everyone who stands still long enough to let him. He's a loveable disorganised mess who uses charm to his full advantage.

They are what they are, I wouldn't change them even though it is hard, but frustration comes so easily when you have to fight so hard for everything, even to be accepted where you feel like you should fit but still somehow don't. It's so easy to just be tired of everything being hard all the time.

I totally get it...i very quickly learned that parents of disabled kids are, or should i say can often be, more discriminatory and less understanding than everyone else. My kids got treated and respected much better in 'typical' situations than the ones that were supposed to be designed especially for them. Which noone considered majorly took away their level of enjoyment as they were forced to endure things they found difficult, that wouldn't have been a problem at the 'adaptive' sessions, but at least they weren't scorned for being, or appearing 'too capable'

DD1, I guess, has struck lucky. She had an IQ test. She couldn't sit still to complete it. I had to sit beside her and negotiate that if she did one activity for the psychologist, she got to play with the pink and blue Rubik's Cube she had spotted in the corner of the room (she was 17 at the time) for one minute. So we limped through the test.

The results came out mixed. 3rd-5th centile for some areas, <0.1st centile for others. So no overall IQ given, but by taking out the worst score, the report decided she didn't have a LD. If you meet DD1, it is very obvious that she has LDs.

The combination of DD1's LD, her ASD, her brain malformation, her PTSD, her eating disorder, her severe speech and language disorder, and her suspected ADHD, along with her never quite investigated physical difficulties and dyspraxic traits, means that she presents more like a 5-6 year old than an 18 year old. But her vocabulary is extensive, so she can seem like she should understand.

Luckily, in her transition meeting to adult services, the psychologist cut through all the pondering about what 'level' DD1 sits at and said that it was a very unhelpful discussion because the combination of DD1's disabilities means she absolutely needs 'enhanced services' regardless of what a piece of paper might say.

Believe me when I say that there is nothing to be jealous about when a young 18 year old does a few hours of activity then has to go to bed for a sleep like a toddler. There is nothing to be jealous about when a young adult has to come everywhere with you because it isn't safe to leave them at home alone. There is nothing to be jealous about when you have to wash a young adult, prepare their meals, lock away sharp objects.

It doesn't get easier as they grow up. It gets harder.