Competitive SN parents: 'my child is more disabled than yours'

[daisy5678]

I was in the park today and J was being his lovely quirky self. There was a little set of coin-fed rides powered by a generator - J is obsessed with electricity and wires etc. so was having a good peer at everything. There was a woman sitting near me on another bench and her son looked about J's age and was also looking at the rides and having a run about on the park equipment too. J came over and asked for some money for the rides and then went into a monologue about the electricity .

The woman said something about him having unusual interests and I said yes. She then followed this up with something about him being very loud and energetic so I said yes, he has ADHD and he also has autism.

"So does mine!" she said. "Mine's very severe though; yours is only mild, isn't he. Has he got Aspergers?"
"No - he is mild in many ways but the psychiatrist who diagnosed him said that he's too severe in many other ways to have Aspergers and his speech was odd when he was young."
"Severe! Rubbish! He's got a great vocabulary. Is he in mainstream school?"
"Yes."
"So's mine, but he's Statemented and has 2 hours of help a day. The most severe ones do, you know. Does your son have any help?"
"Yes, he has a Statement."
"Really?! How did you wangle that? Normally only the severe ones get it."
"Erm..."
"How many hours does he have then?"
"Full-time."
"Full-time! How on earth did you manage that?"
"Well, his behaviour..."
"Behaviour? Look at him, he's playing beautifully!"
"Yes, but at school..."
"I really am very surprised. I'm quite shocked actually. My son doesn't even get full time and he's really severe! My son should have more hours than yours; it's clear my child is more disabled than yours."
"Well, J can be very violent. He spent most of the first 3 years at school throwing furniture and attacking people. He has improved a lot and I'm really proud but it's taken a lot of work from me, the autism support service, CAMHS, his play worker..."
"Oh don't tell me you get Social Services support too? You must know someone. Is your husband a lawyer or something?"

It went on. Until I eventually steered the conversation to how nicely both our boys were playing (separately, of course!) and then pretended we had an appointment.

In many ways, it's nice to have it recognised how well J has come on, but really, it was the most bizarre conversation. Why compete over whose child is most disabled? And why would anyone want to win that competition?

Does anyone else come across this? Nobody at the parents' group (ASD) is like this at all and I've never come across it before.

I've found this sort of competition really common and probably more to do with too few resources spread too thinly rather than this woman being a nasty piece of work. It's no wonder people get pissed off when they don't get the help they need for their children, but such a shame they then turn on other parents who appear to be getting more, rather than the system that lets them down. Let's the services involved off the hook.

You're both right.

It's not like I don't agree that there are different levels of severity of autism. J is not the most severe by any means. But I think her attitude upset me because it's how J's HT thinks a lot of the time - he seems able academically and speaks well, so why can't he learn to behave? And I think that his ability actually disables him in terms of others' expectations of him at times.

And yes, I did feel sorry for her in that she's obviously not feeling that her son gets enough help. But it was a stressful conversation for me, having to justify J's needs, and it's probably because we're getting close to going back to school and I'm dreading it .

I agree. I met someone last week who was comparing her child to mine. They didn't understand that what can make a child more 'disabled' in one sense actually makes them more able to cope with situations. DD1 may be able to talk (although the delay is widening ) but that doesn't mean she needs less help.

maybe there's a prize? I win, dd is more disabled than yours.
But its probably to do with the battle for limited resources and she felt she wasn't getting what her child needed.

hijack. Riven was just thinking of you, your need to constantly entertain your DD and pianos the other day (whilst banging DS2's hand on piano). Don't know if your DD's arms are flexible enough but wondered whether you could learn to "play" piano using her hands and fingers. Assuming you don't play yet, it could be genuinely interesting for you as well as her..... and she sounds quite musical from what you have written.... DS2 likes hearing sudden wrong notes on a tune we've played a lot, etc,etc..... opens up new lines of communication etc, etc.
Anyway I know very little about your DD's condition so it probably won't work but thought I might as well speak up!

Agree with DD about the resourcing problem.

Plus I think there is a natural thing where you sort of test your understanding of your child's "level" of disability by finding out about others - not for point scoring but to understand where you sit on the spectrum of disability, which is pretty diverse. And to see what you have in common with other families. So when you meet other parents you do tend to talk about condition, and about how it affects your child and yourself.

Bonkers MacWonkers to start arguing about "entitlement" and "level of functioning" though - particularly with ASD. I don't think she can actually know much about it at all, or be in much contact with other parents. You just have to listen to a few and you pick up very quickly that the whole HFA/LFA where-you-are-on-the-spectrum thing is not straightforward at all.

It's all about observation and comparison at a particular point in time. I have a friend with a child who has fairly high functioning autism and I used to think 'He's not that bad really, not as autistic as DS1' ( I never said it out loud though !). Now with DS2 (NT) growing up, I realise that the child has an enormous range of problems and disorders and that compared to DS2, he is very obviously 'Disabled'/Special Needs.

I do feel this is really common, since DS was dx a year ago i do occassionally find myself apologising to people for the amount of support DS gets, with DS now being in a specialist school i find that people think we just got that by fluttering our eyelashes.....GMS i know you know we had to fight very hard to get that! ;)........
this summer i have been very lucky with social services support and respite and i did spend the first 3 weeks of the summer feeling SO guilty for having so much help.. even my friends didnt fully understand why DS had respite for 3 days a week UNTIL they saw me having to restrain him outside Icelands on the only day i had him all day that week!
I think it is an issue more about limited services BUT it also depends how hard those parents fight for support and how loudly they shout to get their voices heard. GMS i know how much you put into Js support and every credit to you that J is responding amazingly........you are an amazing mum and a role model to me.

Maybe this will encourage this Mum to seek out more support for her son if she feels he needs it. It is very useful to see what other parents receive in your area.

A large part of this kind of problem starts with the poor advice given to parents in terms of what support is available to their particular child.

I feel that we have a reasonable level of support for my daughter at the moment but I know how things can change very quickly.

GMS, you should be very proud that your son is doing so well.

lingle - dd's arms are stiff and non-functioning and her hands/fingers have no movement at all. Would be ironic if her 'gift' was to be a concert pianist! She does like music though.

Thanks, vjg and Bonkerz! Bonkerz, I think our experiences have been similar and what you've said is lovely .

Yes, he has come on so well and this is the first year I can stop and say 'phew- Statement is brilliant, autism support service are excellent and I'm getting decent respite, CAMHS support, DLA etc etc', but it's all been fought for, as you know, and I only wish that I had a solicitor hubbie to do it all for me! But all those things make a massive different to his life and mine and I am really happy - for once! Just dreading school and return to real life .

I did say to the mum that she should come to the ASD parents' group, cos she'd pick up lots there about how to get more for her child if that's what she needs, but she'll just get the other mums going if she tries the 'mine's more disabled than yours' thing. I hope she does come along though because parents don't need to compete - it's more effective when we unite against the shite services and force them to improve.

I've had this quite a bit from one particular mum, who used to often compare our sons and comment that the fact her ds had a statement was because he was more severely autistic than mine. In fact my ds's problems are just as significant but they are very subtle and you need to know what you're looking for to see them, iykwim. Her lad fits a more obvious stereotype - toe-walking, poor eye contact, high sensory sensitivity. Mine is more social (which for the uninitiated means 'less aspie') and was often violent and aggressive in school (he's HE now) but rather than being observed as part of his dx presentation, he was regarded by schools as just a naughty boy - as for other children, there has been the assumption that if he's capable academically then there's 'no excuse' for him to behave so badly.

A lot of it is down to the work we do with our children. I've said for years that if ds is well supported and calm, you wouldn't know he had problems at all (which is true), but if you let him fend for himself to the point where he blows - then everybody better watch out and you'll KNOW how extreme his difficulties are! We've done a lot of work on sensory sensitivity so it's less obvious now, but if he's not supported it comes back. Same with coping in social situations and using social stories to counteract the anxiety.

It's about 'in the moment' observations too - nobody can make a judgement on the severity of another child's disability on the strengh of ten minutes in the park. I'm betting that GMS's son isn't so well behaved all the time, because mine certainly isn't.

Luke Jackson described autism (in Freaks, Geeks) as being like a graphic equaliser. All the settings are different for every diagnosis and they change according to circumstances. I think that's a great way of putting it.

As for services, unfortunately we're led to believe that it's all there when we want it, and many people just setting out on their journey don't realise how hard they have to fight even for the basics. If you don't ask, you don't get and that can take a while to grasp. The system does suck and there's not enough professional support to go around, so it doesn't surprise me that this level of combative disability is so common.

ah... appreciated she couldn't move her arms but hadn't realised about the stiffness....

ah well.....should have known you'd have thought of it.

GMS I get this a lot too, with ds1 definitely (so very like J as you know), but also with ds3- there's always someone willing to say something but you know, what they don't realise is how it makes me feel: apart from the occasional why-dont-we-get-that ones its normally intended to make mre feel better

doesnt thogh; makes me feel 1 inch high and really bad for needing help. I need to apply to family fund for a washing machine this week (mine is leaking and we have no sapre cash ) and I am finding it hard as there is a voice saying 'you cannot have it, your child is not disabled enough'- even though their needs are severe enough that they are the reason I cannot work and therefore am at home and broke.

oh and yes you have done wionders wi6th J absolutely

theres morewe should getwith the boys but I am too hampered by things like a phone phobia (traits from moi? never.....) so have basiocally given up. DS1 will be HE if it all collpases at school under the new Head though

Yes, peachy, that's exactly it - you feel bad for needing help - and we shouldn't.
I hope the new HT is good with your ds1 - HE would be quite hard, I would have thought. I think J and I would murder each other within a day. He's lovely if no demands are being made of him, but even homework is bloody hard work to get him to do it. I coudn't teach him full time. I don't have the patience (teaching my 25-8 teenagers is far far easier).

Streakybacon, no, he's not that well behaved all the time! He can be horrific, usually at school or in the evenings on a school day. It's all the demands that are put on him, I think. He's been really quie relaxed this hiliday.

pipinjo it's those victories that lead to others' winning too - brilliant!

GMS we enountred a few teachers on holiday who commented on how bright ds1 is, Riven said similar when she met him. We always thought the same and it's becoming evident that his bottom class at school status is a result of inabilty to cope with environment and learning styles. So I would like in many ways to pull him, I think I could work marvels with him at home but DH is reluctant. We're starting a PC absed thing for ds1 soon though to try and bring him up to date, he's keen anyway.

Ne Head is upposed to be uber strict and ds1 is really scared of her. Not what he needs at all. I'm tryng to find some work so I can fund my MA but if I can't find any would choose to HE like a shot

I really admire you for that. I just know that J responds to any kind of direction, especially schoolwork, with such defiance, that it would destroy our relationship, which is definitely improving.

Is new head understanding as well as strict?

I agree with donkeyderby. I've sort of been in the opposite situation with the local support group where because ds1 is the most severe by a distance of the people who attend I can't really talk about him at all because people get defensive and start showing their disability medals - so many years post diagnosis it is a bit odd because I stopped comparing him years ago- he's just who he is. Actually tbh I just decided the group wasn't really suitable for us and stopped going. I have observed quite a lot of what you describe there though.

The support group at school (SLD/PMLD) doesn't really have a competitive side to it - probably because although problems are really varied (fully verbal to non verbal, severe physical disabilities to none at all, profound LD's to children who can read, epilepsy to completely none etc) all the children need a similar level of support -whatever their particular mix of disability- and tend to access the same sort of provision. So the talk is around how to access the support rather than any competitive 'my child is more disabled than yours' iyswim.

why I dont go to any sn groups seem to run into well your child does not have dx of asd so was basically told go away.

Tried a group localy set up for kids with laungage issues but then ran into the well he has other problemsthis is language support only

Ds is very much of the odd one out other than here on Mn

Phoenix that's crap. Is there a general SN group you could access? Most of the ones here are very specialised - DS, CP, ASD, ADHD, but there is also a general SN one which some people do prefer.

Oh yeah, was making lunch and remembered another reason why I couldn't home-ed... the £1100/ month mortgage that I'm trying to manage alone on a teacher's salary - don't know what I was thinking (back in the days of booming house prices and dire predictions of never being able to afford a house if I didn't do it know. How I laughed (not) as interest rates and house prices started to plummet a year or so later. J loves our house. I quite do. I couldn't give it up. I also would feel sad for J not seeing his friends. He hates schoolwork but loves his friends and the extra-curricular stuff.

now not know

Phoenix- that's what I like about the school group- it's a whole mix of disabilities - and far more supportive ime, perhaps in part because of that mix. There's not such clear comparisons to be made.

Is there a local SN activity you could access? For example the donkeys locally and a disabled swimming club gives parents of children with all sorts of different disabilities the chance to mix.