My Child's Not Perfect.

[CarolCervix]

ITV documentary on next week.

I had a rant in AIBU here but wondered what you lot think.

am I unreasonable to be bloody funing?

I thought it was ok.
But it seemed to want to concentrate on the better off families didnt it?

The woman who thinks brain tumours are easy to zap and remove had a lot of money to throw at her son's condition.

Its not that I think they shouldnt look at better off famiies, its just an observation. Interesting that even those with resources and education found it almost impossible to get what they needed for their kids.

Sphil - There is another part, I dont know when its on though.
I suppose they focussed on better off families to try and avoid the accusations that things like ADHD/ASD etc come from bad parenting, which normally only happens in poor families - the kind of comments you get on the DM website.*

*not my views at all!

To see how scared little Katherine was heart breaking my little girl is like that everyday (she has autism) and its heartbreaking to see your child so stressed

I couldn't believe it took Adam so long to get a dx (Well obviously I could, but you know what I mean.) But I also couldn't believe his Mum waited for a dx. Why didn't she know he had ASD (through her own research...) and start accepting it? When she was so desperately looking for some answers?

And I couldn't believe how badly Katherine was being looked after in school. Surely it didn't require all that SALT? A TA could have done stuff like that with her from the beginning... Or if it did require SALT, and they could afford to go private (which I think is what it said) - why did they wait so long to get it.....

I guess the message from the program, as always, is that parents have to be the experts and have to be incredibly proactive, because no one else will help your kid :(

(I'm sick of being an expert in mild ASD / Dyspraxia and Dyslexia. Can I have my old life back now?)

My friends little boy started reception in sept and is completely mute! She is in complete denial and has even refused EP visit as she says it's not a problem as he talks at home!

Denial, by either parents, school, or the professionals is such a problem :(

It seems related to this notion that 'every child develops at their own rate', which as we know can be bollocks.

I just wish the professionals would come out with a hard set of milestones that have to be met otherwise concerns need to be raised.

Physical ones like walking and talking, but also educational ones.

By X if your child can not do Y then an assessment by Z should take place....

By the end of Reception, if your child can not read CVC words then a full assessment should take place type thing.........

Proper national govt guidelines that have to be followed :)

(OK, I'll stop dreaming now)

I don't think strict guidelines will necessarily help - they would never be set early enough to help the people who really needed help early and would be used as an excuse not to provide help until it's too late in those cases, and would terrify mothers of children who have nothing wrong with them and should have been left in peace.

The little girl with selective mute was very interesting to watch though very sad my dd2 is very similar a chatterbox at home and quiet as a mouse in company. Be interesting to see what happens when nursery cones around!
Will be interesinf to watch next installment of the programe

No, I mean guidelines for early milestones as well :)

When your child should:

• Smile
• Roll Over
• Sit Up
• Crawl
• Walk
• First Word
• X Words
• Sentences
• Walk up stairs

The whole lot. Some bloody manual somewhere that says children really should do these things by this time.

Physical milestones and educational milestones.

Because at the moment almost everybody denies that there are any hard and fast dates for milestones.

Failing these milestones would trigger assessments, not 'labels' :)

Parents shouldn't be terrified by assessments - or rather I'd rather have some parents who don't have 'cause for concern' to be terrified, then some kids missing out on assessments.

How 'terrified' parents get by assessments, can be 'managed' by how the whole scheme is marketed. And by who and how the assessments are done.

Failing assessments would trigger help (Ha, ha. Well it's my fantasy :) )

I watched it last night. Titles are designed to draw people in to watch the programme so there's a lot of rubbish wording out there. For me, the main thing is to raise awareness of these conditions so I'm prepared to overlook the title.

On the mother of the boy with tourettes she was saying that it was hard to know what to do to help because tourettes doesn't show up as a tangible thing, the experts are still trying to work out what would help. The brain tumour comment was unfortunate but don't be too hard on her, she's simply struggling to try and help her boy in anyway she can but she doesn't know what to focus on.

I don't understand why Adam wasn't diagnosed as Autism sooner, particuarly because of the behaviour issues he showed in school. However, looking back when my DS started school I fought very hard for help (and researched and researched who I could go to). Perhaps one issue is that the routes for help should be more clear for us parents (also wondering about the people his mum had seen but don't know all the circumstances). I certainly felt for Adam's mother and I'm glad that now he has a diagnosis, he should be able to access more help.

Clearly in the past other experts had agreed that Adam had something neurological going on, but didn't feel that his behaviours ticked all the right boxes for autism. Unfortunately, listing all the things that are a problem NEVER brings the help you need if the list doesn't come with a formal diagnosis, it just allows every man and his dog to put their own interpretation on the causes of the symptoms and deal with them in any way they fancy, or, far more likely, think they don't have to do anything about them at all and can blame you for being a bad parent causing all the problems, because if the problems were "that serious" and not the result of your own fault, you'd have a diagnosis to cover the problem...

As for the title, I have no problem with it. Nobody is perfect. If it had been "My Child is Not Normal" or "My Child is Abnormal" I would have been angry.

but there are a set of milestones, in every red (not sure if everyones is red but the books HV use) book! My dd1 wasnt walking by 2 and they still kept saying "she'll do it in her own time"

Yes, there are agreed milestones - eg crawling children not walking by 18 months are considered outside the usual norms; bottom shuffling children ought to be walking by 2 years; particular speech sounds are expected by particular ages. Rolling has never been an official milestone, because too many children don't do it to make it worthwhile checking up on. I found the "official milestones" a right bl**dy pain in the backside, not a help, because I found people using them as excuses not to listen to me. For example.... Rabbitstew: "I know rolling over is not an official milestone, but surely there's a difference between children who choose not to roll over and can in any event sit up by some other method and children who are clearly trying to roll over and are getting distressed by their inability to do it because they hate being stuck in the position ?????" HV: "But rabbitstew, rolling over is not an official milestone - lots of children don't do it." Rabbitstew: "But if not rolling over means your child also cannot get itself to sitting and you have to put him in that position, even though he's 12 months old, surely that is not right?" HV: "But rabbitstew, your child can sit if you put him in that position and the milestone is for age of sitting up, not for age of being able to get yourself into a sitting position." etc, etc.

I think there is a huge problem with the training of the HVs.

I think they are meant to do some kind of developmental check like I described, but normally don't, or do it badly :(

And I guess school are also meant to do the same kind of thing, and also do it badly.

The more I learn the more annoyed I get with 'the system'. Why is it so hard for children to get a dx, and then to get help? Why?

(Oh year - money :( )

Adam reminded me a lot of my son who was also diagnosed late (nearly 8) with ASD althougth he also has ADHD and LD so is rather atypical.
I agree rabbittstew that milestones can work against a child rather than flagging up significantly uneven progress or generalised delay. It felt like delays were always put down to something like his prematurity, difficult early months, ear infections - you name it there was a reassuring possible reason - not just from the HV and GP but even once seeing the paed. I know wait and see helps the diagnosis become clearer in some cases but the waiting about is harmful. Oh and that 'he'll do it in his own time/ when he's ready' phrase Lisa!
The programm is not ofcourse about that so I had better get off my soap box! The lack of resources and long waits for help were not high lighted as well as they could have been.

The next program is next week Tues at 9 ITV I think .

I just watched the progamme, as I recorded it tbh they cannot cover every SN in the space of 1 hour, its impossible. These are real families with children who have SN, not made up, I don't know why some people on here are being critical. As for the mother who has a ds with Tourettes, she is entitled to feel the way she does, many of us would love a cure for our children, for them to be like everyone else and for it to be that simple, but its not! Mabey she should have not said it on national tv, but we cannot control what others think and feel, and that we are happy to look after our special child. The title was a bit though, no child is perfect. On the whole I liked the programme, but it was not long enough to cover everything, just skimmed over the surface.

Title didn't bother me at all...

I can easily believe that Adam didn't receive his diagnosis until so late, as we have been in the system since ds was and he's 8 in a couple of weeks. Up until today we had various verbal dx from different professionals, but today the clinical psychologist has said she wants a formal dx and that she's absolutely certain that he has autism. It can take forever!

I watched it last night, parts of it made me very .

Adam was obviously on the spectrum somewhere and as someone said earlier I was surprised that his mum hadn't done some more research because she could have put things into place to help him. It took us along time to get a DX for Dd3 and some people kept saying she wasn't on the spectrum but as we gathered the evidence we were convinced she was and I did tonnes of reading to try to help us all as a family. He was a lovely little boy, amazing eyes.

Katherine looked very sad and out of her depth in that classroom. I felt really sorry for her, she also made me sad for Dd3 who does speak at school but is unable to ask for help and has often struggled through the day without enough support.

Everytime I looked at Katherines sad little face I kept seeing DD3. It nearly made me cry.

I am not sure people are being critical of the program Piglet, so much as the system it portrays. I thought it was good ( and real) because it got ( all be it briefly) into the uncertainties and difficulties. I really felt for each family. I identified with them all to some degree, particularly the children most like mine. I totally understood the mother wishing it was something devastating but fixable rather than the devastatingly uncertainty they now have. I wonder if when her son was first investigated her worst nightmare was that he might have a brain tumour so that is why that particular comparison came out. I think the program left us to wonder.

demonata I have a child with ASD/LDs +
I had a child with cancer.

I will be hard on her. Her comment was inexcusible.

If she had said 'I wish he had something we could cure/treat/remove' I would understand.

Brain Tumours are some of the hardest cancers to treat and the treatment, even if sucessful can leave terrible damage.

One of the things it can cause is Tourettes.

She was glib about the treatment for something she had no understanding of at all.

If someone says 'I wish my child had something easy like Tourettes' I expect she would be furious.

I don't know why it took all that time for Adam to get a dx, looking at him pre dx it was obvious he was on the AS, how his parents did not pick up on that. I do wish that there was some magic cure that would make dd 'better' but its something that she will live with and uncertainty for the future.

my son is 12 and is only now on the waiting list for assessment for autism/aspergers.

We've been fobbed off for years by proffessionals who believed that his problems were down to his adhd.

I bet she had her suspicions that her son was on the spectrum but got no where with the countless assessments he had

I totally can believe that it took so long to get a dx, so many kids are missed that have these kinds of problems and I just find it so so sad

Adam's mother clearly wasn't surprised by the ASD diagnosis, I expect she's been asking for the last 7.5 years whether her ds might be on the spectrum and has previously been told that he doesn't fit the criteria.

My son wasnt dx till he was 7 and I work for the Specialist Child Development Team!

I think it was generally quite a good programme. The demographic of the families shown will depend on where they advertised to recruit them. They were all paying significant amounts of money to get their children appropriate help, out of the reach of most.