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.

no activties locally till he is 8 , we are on waiting list for RDa but its at least 18 months

it is very lacking locally for sn children , ds will be going to ms where i know were going to stickout like sore thumbs .Just want somewhere wto go where ds is accepted for just being ds

Have you looked at whether there's anything available for children with learning disabilities? Although ds1 has autism most of the sutff organised for children with autism locally isn't really accessible to ds1, we have tended to have better luck with activities organised for learning disabilities.

Although the age 8 thing applies around here a lot too.

nothing and would say the mld and language affect him more than his asd traits .

Am learning to drive so hoping that will open more doors for us as know there is more stuff going on about 90 mins away .But am seriously considering amove at the moment as well

The support group here meets on a weekday and doresn't allow children, so is impossible with ds4 in tow.

however, we attend 9and I know some kids are too profound- lots of children with quite severe needs attend though - a sports group just for disabled kids, and the aprents have in all but name created their own support group.

I also made a point of having a aprty for ds3, and although all but 2 of the guests had to go home after 10 minutes it meant that we did get to meet a few mums from his SNU- one of whom has since emailed for a coffee and chat.

think I`m just having touch of blues feeling very isolated rl at the moment with trying to juggle all the balls and argue with Lea , Nhs just about everyone

definately why we ahve never felt we fitted in to either the ASD group or the CP group, ds2's CP is very mild & I felt like fraud going there.
I did feel at home at the preschool sn group as there was a mix of sn's & no competetion.

DS2 has just used the sn playscheme for the first time, again a mix of sn & I didn't feel like anyone was being judgemental, each child is given the support based on the individual level of need.

Givemesleep the lady in the park did sound a bit OTT & very forward -strange, was she alone !

Phoenix, does your local council have database of disabled children?? DS2 is registred & we get sent all the local info & groups that are running accross the county.

i get this sometimes, other parents ask if you get dorect payments and how many hours you get, when i say 28 hours per child per month they are shocvked and think it is unfair, but then they don't know our situation and how much i have had to fight to get our three kids any support.

Im in north east essex and the specalist health vistor is crap and thats being polite

will have to enquire myself,

Since ds is not really showing any signs of the meltdows and challenging behaviours i know lot of your ds have think thats y been excluded from ASd groups mind no dx even means professionals exclude from courses that could help

And the GDD catch all label does not help either

My dd has severe ocd which was diagnosed earlier this year.
We have to explain her condition to friends/family so they understand her compulsions, and know how to deal with them. Her behaviour at home can be diabolical, but at school and elsewhere she is an angel- she lets it all out when she is at home. It is such a strain on our family at times, but because her problem is not obvious, people don't realise that we need some help too.
MIL refuses to even listen- asks if she's mentally ill, "don't know where she gets that from", and other helpful comments.
Still, we are learning to manage it.
I do look at other friends and wish my dd was "normal"- she would be so much happier.

Slightly off topic, but similar, what about those NT parents who will say 'oh my ds/dd does x,y or z, we just deal with it, what's the problem'. They make you feel that it's just you but are jealous for your child getting extra help at school

I have one friend I met up with recently who was positively resentful at the help my son was getting to adjust to a new class. Like Aspergers was an excise to make him feel more special

Yes, Debs, we've had the envy, too. Our son has a secondary place at the most oversubscribed secondary in the area (bloody miles away, but hey), and the general bemused reaction from other parents has been 'How did you wangle that?'

Well, that would be because it has the only ASD unit, and he has a fulltime statement.

Oh yes I remember some weird envy stuff when ds1 was at mainstream nursery! It was odd. Funnily enough we don't get that now

Actually I think it is really hard to have to deal with the mainstream world constantly with your child with SN. I haven't had to do it for years - but this thread is bringing it all back.

im waiting for that when its realised ds has f/t help in school and know sounds bitchy I intend to mak sure its ds shes helping not as one parent put oh good another adult to help with the class

Phoenix - not bitchy at all - I say the same to J's school when J tells me 'oh, Mrs x couldn't help me cos she was helping y'

They started the conversation once with 'oh, J seems to think that Mrs x is just for him and he needs to realise he can't have her full attention' and I was like 'yes he can if he needs it', because I'm the one that's spent years fighting for the full-time statement. ' I have no objections to TAs helping others if J is Ok (I mean, I'd like him to be more independent), but us parents have got to protect our children's rights. I always fight the general battles too, when I have the energy, for all parents in our area, but J is my priority. That's why I got the LEA to insert the words 'full time one-to-one support' into the statement cos I know that kids in my school without those words share TAs with others, perfectly legally .

So, not bitchy at all.

Deaddei - the 'differences' do make them unhappy, but hopefully they learn to accept those differences not as a 'bad' thing, later in life.

I shall be helping in school between ds class and dd so be jut keeping a eye on things.Ds has it in his statement to thanks to mn