can I ask about the word "mild" and how it affects you

[saint2shoes]

due to the dreadful murder that was in the news. I have been thinking about this a bit.
and I thought I would ask..

when you have a child that is dxed with a mild disability(say mild cp for instance) do you find you slip through the sn net, because of it being "mild"?
sorry if I sound nosey, but I don't know much about "mild" disability and am interested.

I suspect that DS falls pretty much into the mild camp (initial DX was severe language delay) by private SALT. I definitely feel I slipped through the SN net - (not that services are great for more severely affected DCs where I live...). I had very very little help with choosing a school for DS - one very lovely head was prepared to give me some off the record recommendations for schools that were good with DCs with SN. I had to phone round all the Surestart centres to find a speech course to go on, as SALT department wouldn't let me go on any courses until he had been seen. The one time I went to a support group I felt very much there under sufferance.

this is not the same but I have found ds1 totally fell through the net as he has a long term chronic illness rather than a disability. also, his dx is that he should eventually grow out of it (ie by the time he is an adult). that seems to mean we didn't need any help cos, you know, in 15 years time he'd be fine . not much use when he was in and out of hospital with very serious illnesses, unable to walk, physically aggressive etc. I literally had no idea we could ask anyone for any help at all until a few years after his dx

The worst thing about "mild" is like TC says, you feel out of place at any support group, but your kid isn't able to go to playgroups with NT kids as they get older because they don't "fit" there either. Parents of NT kids don't really get why you're so worried because your DC "looks normal" but parents of SN kids think you must be OK because your DC "looks normal". DD, like TC's DS, has a severe language disorder but gets no help at school (although we are applying because we have a wonderfully supportive neuropediatrician). On the other hand, even "mild" physical disabilities can be quite debilitating for the child (thinking of some of the posts recently by Weegiemum and Cory) and I'm sure some of them need more help than they get.

Yes - like Brioche Doree says I felt out of place at ordinary playgroups. By that point I would only go to Surestart run ones (as I felt that the staff would have at least some awareness of SN and inclusion). At library story time sessions DS would grumble at going in and seeing all these kids and would have zero concentration (because of not understanding the stories) and want to run around loads, at other groups - say music groups - I would find he was not only the oldest child there but the least able in terms of concentration etc. I found it soul destroying at times.

Flamechick is "mild" imo. It always sounds the wrong word. In my way of seeing it, if the AS spectrum goes from yellow as NT to not at all functioning red... she is about a pale orange. Not NT, but not causing enough of an issue for me to feel justified in fighting for dx etc.

ds1 was initially diagnosed with 'mild language delay' . I think it changed things dramatically tbh. Had he been given his correct diagnosis - 'severe autism', then we wouldn't have waited for the NHS appointments we would have got on with some sort of full on home based therapy. (We had private SALT, but he needed something much more). I remember a friend sending me info on ABA shortly after his 'mild language delay' diagnosis and saying 'it would be like using a sledgehammer to crack a nut'. When of course it wouldn't have been. It would have been entirely appropriate.

OH and the point being we ended up waiting over a year before we really got into the system because of the incorrect diagnosis. Had I known he was severe, I would have been screaming from the rooftops for help or scrabbling together money to pay for stuff.

My ds2 has what I suspect is mild to moderate as, but quite severe adhd. There fore he is seen as a mildly affected child, but who is extremely wild, so he has behavioural issues. Some teachers and staff at his school, speak to him quite harshly which sets him off. He has some issues with speech, pronouns, often refers to himself in the third person etc., but these problems are overlooked. I think he completely slipped through the net, until he went to school and is now 'disruptive'. Even now,the senco says he understands him, but the current policy is to allow him to do mostly what he wants. I am waiting for the phone call from school to tell me that there has been an incident, which there will inevitably be, if he is allowed to follow his obsessions and distractions. He has no understanding of consequences or danger, soon he will do an 'experiment'.
My ds3, was considered mildly delayed, then severely delayed, and then very bright. He has now got a diagnosis of autism, with some physical delays to be assessed. I think he is moderately affected, so again I have to fight for him to recieve salt, he gets interaction type therapy at his special school, and some physical and occupational therapy there. He is one of the lucky ones in my borough, the rest get shoved in mainstream school and it is left up to over-worked teachers and lsa's and even lunch-time staff to pick up the slack.

Oh, god, jimjams, same here.

iirc, your ds was the same as my dd1 as a toddler - nice and happy, content, charming, "just a bit behind" as all the professionals kept putting it.

I had one paed tell me that dd being so happy to play with a brick (one single brick, picking it up, then dropping it) for 30 mins while we spoke was a blessing as "at least you can get on with the housework"

dd1 was diagnosed with "mild delays", and so we got no help at all. She still doesn't.

It took 18 months before she got portage, a helper at pre-school, or any kind of SALT assessment (still doesn't get SALT, as she is verbal and a pre-schooler, that ticks all their boxes . she can recite the whole of the Gruffalo, but she can't tell me when she's hungry - doesn't sound like a 4 year old with a good command of the language to me)

we are now fighting to get ehr into an ASD unit rather than mainstream, as she is still "no trouble" and easily overlooked. Her last paed was at least brave enough to tell me that the issue was, and I quote, "we've got bigger problems".

well, they might, but they aren't mine, or dd1s.

I first had concerns when DS was 2.3 - got fobbed off by a right cow of a HV that DS was "within normal range". And SALT referrals in my city are strictly gatekept by HVs. I strongly feel that parents should be able to self-refer to SALT - I think often they have a better instinct than non-specialist health pros that something is amiss at the 2-3 year old stage. The private DX of severe delay got us precisely nowhere accessing NHS services.

I think the word MILD in early development should send up an enormous red flag!!
Ds also started off with a Dx of mild developmental delay. I too think this underestimation did us all a huge disservice! We had no intervention at all, only assessements to conclude he had to wait until he could talk for salt. I felt very alone, blaming Ds difficult early life for his delays, and determined to do the best I could. Fortunatly a medical friend in Aus sent me a photocopy of an enormous therapy tome (for delayed development) and I followed amongst others! If I had known then he had autism I could have done more specific things even if still unsupported.
Now Ds at 8 has a dx of autism, - and frankly the signs (loosing language) were there all along! Nothing mild anymore - profound delay in complex language, moderate/severe learning disability, and ADHD. He only started getting regular NHS SALT at 7 once he was in special school.
Oddly several ordinary people asked me if he was autistic when he was younger -( I had been assured several times he could not be because he made good eye contact)!
I think we are still mostly under the SN radar!

Ds1 was like that - is still like that to a large extent - silverfrog. Luckily the SALT in his school is absolutely fantastic and gave a talk once to the parents about communication. She made us say something in a different language and asked us what it meant. Nobody knew, so she pointed out that just because someone repeats something, doesn't mean they can understand.
Ds1 has a language disorder as part of his ASD and whilst he has made some definite, irrefutable improvements, he can still kid you into thinking that he understands things when he doesn't. He will learn a phrase and the response to a phrase and fit them together without really any, or much, understanding. For example, before we went on holiday this year I would tell him that we would "have a nice time on our summer holiday". The actual events were rather different, he was angry, upset, anxious and unsettled for a large part of it. However, when he talks about the holiday now, he has just one phrase:
"we have a nice time at summer holiday".
Now, anybody hearing that would think "well that was a good sentence, grammatically and pragmatically correct, sounds absolutely fine." But there was a great deal about the holiday that did upset him, more than the parts he enjoyed and yet he is unable to talk about those, to say that he didn't like this part or that part. I've no doubt he did enjoy some of the holiday, but most of it was a different matter.

Agree Tclanger - I am appalled by the system! This puts stress on parents trying to get help for their children (whilst trying to provide the help themselves by whatever means). That stress wears parents down - but although energy and even good health may run short at times - love never runs short!!
I have wished my son did not have his degree of difficulties - that he could access what others do - occasionally that I could get more sleep or a moments peace - but be without him - never!!
The recent tragic case - I just cannot comprehend it.

"I strongly feel that parents should be able to self-refer to SALT "

You're so right Total. You can do this in Bradford NHS - the SALTS have a monthly clinic and all the professionals seem really happy with this - they are their own gatekeepers.

Well ds1 is classed as AS, which is mild in nature

except proper understanding is that its just HFA without language delay but beaviourally can be- and for us is- the same as for many kids with fairly severe asd.

but AS isnt classed as entitled to SS support here. Full stop.

Tclanger

there isnt aan entitlement to a statement as such. I know of kids with severe asd, cp etc who have been refused.

they key is that you need to show your child needs support to fuly access the MS curriculum. Now I know (because we though ds3 might be SLD and thats what we applied for the statement on) that fits legal criteria but not every LEA bothers to apply it correctly.

Fight!

silverfrog you just described my ds3 wonderfully- every aspect!

On paper it looks as though ds2's ASD is very mild. He doesn't have the problems with motor skills and co-ordination that his older brother does.

On a day-to-day basis he has a much harder time of it than ds1. He gets very angry with himself, hits himself, and calls himself names. His development is still so disordered that he doesn't seem to quite know where he should be IYSWIM. In some areas he's years ahead of where he should be, emotionally he's like a toddler, and somewhere in the middle of it all is a very confused 5yr-old boy.

The perception of mild AS is usually someone who is probably a bit geeky. It doesn't begin to cover the reality of what life is like for ds2.

Trouble is it takes a while to discover the system is failing! I made the mistake of believing health professionals (he'll catch up- means we dont think he'll catch up but we havent any resources) senco ('hes not bad enough for a statement' means 'he needs a statement urgently but our LEA turns everything down so why bother'!) I needed to know these things when ds was little.
Yes you have to fight and be proactive for everything!

I agree Magso and it's also not fair that those who shout the loudest get the service. I have had to become this mad uptight person who has sent the SALT emails in the middle of the night

I suppose even I think of ds disability as mild compared to what some children have to deal with but its a very deceptive word. I also feel like its hard to find a place where we belong. He is too high functioning for many sn groups but too different to really fit in at NT groups.

We didn't slip through the net because ds first school cocked things up with him so badly that he became an urgent case for both the LEA and CAMHS after just a 1/2 term of reception. It was a really horrible time for all of us but it did mean that we didn't have to fight to get his needs recognised and to get him support - at least support in school.

I'm hoping that now he finally has a dx there will be more practical help available to us as a family.

I completely agree that its wrong that those who shout loudest, or have children whose behaviour makes them disruptive or potentially dangerous to other children, get help so much more easily than others who end up slipping through the net.

I don't know that its those that shout loudest as such. I think it's just that if you sit back and wait you will be waiting a very very long time. You need to know the law and quote it at them frequently.