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This Is My Child - the new MNHQ campaign. Everyone come look please!

304 replies

RowanMumsnet · 16/08/2013 15:16

Hello,

As lots of you will already know, we've spent the last few months working on a new campaign called 'This Is My Child' - and it's launching on Monday. (We're letting you know about it now because there's a rather nice piece about in in the Guardian this weekend.)

You can read about the background to the campaign here, but in essence it's about myth-busting and awareness-raising - so we'd really love you all to share it as widely as possible. We've consulted with Mumsnetters and the material is supported by input from some of the leading charities in the field: Mencap, Contact A Family and Every Disabled Child Matters.

Over the years on Mumsnet, parents of children with SN have described how their lives are made more difficult by the occasional (or not-so-occasional) judginess of members of the public. They've described how this can contribute to their isolation, placing limits on their social opportunities because they can't face the stress and disapproval that comes with public interactions.

That's why we came up with This Is My Child. Its aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act together to make day-to-day life a bit easier for these families.

The input of parents caring for children with special needs has always provided a fascinating perspective for other MNers, encouraging empathy and giving real insight into what life can be like. We're hoping that our myth-busters, tips for non-experts and strategies for parents and carers, along with our background facts and figures, will help to bring the wisdom and perspective of Mumsnet SN posters to a wider audience.

So if you like what you read and think someone you know would find it interesting or useful, please share it as widely as you can (you'll find our impressively large sharing buttons on each page Wink).

And for the Tweeps among you, we'll be holding a Twitter party on the #ThisIsMyChild hashtag on Tuesday between 1pm and 2pm; please join in if you can.

As ever, we'd love to know your thoughts and hear your feedback, so please use this thread to post up anything that occurs to you.

Thanks
MNHQ

OP posts:
SunshineMMum · 21/08/2013 22:30

This reply has been deleted

Message withdrawn at poster's request.

Trigglesx · 21/08/2013 23:20

I am a bit saddened that in this day and age, people still act like ADHD is a made-up thing. My 7yo DS1 has ADHD (along with a number of other disabilities), and it is so hard sometimes to see him struggling. He has difficulty with impulse control and just cannot modify his own behaviour at all. I can sit and watch him when an "impulse" is taking over - if you try to distract him or encourage him to do something else, you can see this "impulse" like a fishhook in his brain, dragging him back, over and over, his eyes keep tracking back, his head keeps turning, he can't focus, he can't hear what you're saying... it just keeps dragging him back... It must be so difficult to live with that daily. Like he has no control over himself, and he just doesn't understand it at all, due to his age and his other disabilities.

People that say ADHD doesn't exist have simply not lived with it.

Holliewantstobehot · 22/08/2013 10:01

Triggles - also that you get a diagnosis really easily! My son has had symptoms of dyspraxia since he was 18 months but only got a diagnosis of dyspraxic tendancies at 5 and an actual diagnosis of dyspraxia at 9. I have never met anyone who has walked into a gp and come out with a diagnosis 10 minutes later.

JakeBullet · 22/08/2013 10:18

ADHD is awful, my lovely DS was never any problem in class, no behavioural issues at all beyond hiding if something scared him (he is autistic) but ADHD meant he didn't learn to read while all his peers raced ahead. his self esteem was shot to pieces by the time we had a diagnosis...he was 8 by then and still on ORT Level 3.

A diagnosis and then appropriate treatment was life changing for him...within three months of going onto medication he could finally read with confidence....it just gave his concentration enough of a boost to see him achieve. I am so proud of him and so happy to see his self esteem soaring because now at the age of 10 he knows that he CAN do things and that he CAN achieve along with his classmates.

It is important to diagnose ADHD, I wouldn't wish the diagnosis on any child but if they HAVE ADHD then a diagnosis can be positively life changing.

Trigglesx · 22/08/2013 10:31

DS1 is 7yo and is attending a specialised school as he could not cope with all the sensory overload in a mainstream school. His ADHD affects him literally ALL THE TIME. He has the impulsive kind - no sense of danger and can be a runner and then might hide due to being overwhelmed. He is all over the place from 5am when he wakes up every morning until 8pm when he finally goes to bed (only sleeping due to medication, and even then he's up during the night regularly). He cannot have the meds commonly given to children with ADHD such as Ritalin, as we have a family history of heart problems, and thus the medications would be a high medical risk for him. He already deals with his disabilities, plus asthma and eczema, I'm not about to risk him having heart problems as well!

He is a sweet lovely child, very good reader (recently assessed at 15yo+ reading level), however he struggles to apply the information he acquires to actual life situations. So he can recite road safety, but will then race out in front of a car if not held onto, just so he can see what make the vehicle is (not realising he is putting himself in danger).

I do not understand how people can look at these children and say it's bad parenting or naughty children, when it's so painfully obvious that the behaviour is beyond the control of the children at all.

Holliewantstobehot · 22/08/2013 11:30

Triggles - you are so right. Even my sister remarked that when my son was getting angry and frustrated he couldn't seem to get himself out of it. I give him consequences and follow through but it makes no difference. He just can't seem to change his mindset. Whereas my dd and my dnieces would stop and do. Last week he had a meltdown over 2p - when he finally calmed down even he was bemused that he had lost it over 2p! It's like a switch flicks in his head and all you can do is manage him through it until he comes through the other side. It is not the same as my dd who rarely gets like that an if she does it's over two minutes later.

ViviPru · 22/08/2013 11:36

To all the parents of children living with ADHD, there can be real hope. DH (diagnosed as an adult) was described by his consultant as one of the most profound cases he'd worked on. He is now not only successfully managing his condition with medication and other strategies, he's running his own business, happily married (to me!) and generally getting on with life. Some days can be a struggle, but then isn't that the case for everyone?!

Trigglesx · 22/08/2013 11:52

Yes, some days can be a struggle. Some days can be a nightmare. I can honestly say that this is profoundly different from when I was raising my NT daughter on my own, so I wouldn't necessarily say "isn't that the case for everyone?" as it kind of minimises it IMO. Yes, it's a struggle, but to be honest, whether or not it's a struggle for everyone doesn't make it LESS of a struggle. Unfortunately sometimes that type of comment makes people feel that they don't have a right to voice their concerns and stresses because, after all, we're all struggling. And I think that adds to a parent's stress and isolation.

Absy · 22/08/2013 12:05

Awesome campaign MN!

ViviPru · 22/08/2013 12:25

Sorry Triggles, I now realise how glib that comment sounded, I didn't really choose my words very carefully there. I don't mean to belittle people's very real day by day challenges. All I was (albeit very clumsily) trying to say was that while DH's DM went through hell and back during his childhood, he has managed to emerge a functioning, happy and successful person, but acknowledge that we still have the ups and downs faced by everyone.

Genuine apologies.

JakeBullet · 22/08/2013 12:50

It is good to hear positive stories and outcomes though Vivipru, I am a Mum who constantly worries about hat her son might face in the future so I love hearing about how others have grown and managed their challenges. I am hoping that as DS gets older he will learn many more coping strategies.

Trigglesx · 22/08/2013 12:54

ViviPru I'm sorry - I'm not in a great place right now, and I suspect that is colouring my viewpoint a bit. Yes, it sounded a bit glib, but I understand you didn't mean it that way. Thank you.

I think that having a few years of people saying "oh, all kids are like that" and GPs saying "it's not that big a deal, kids all develop differently" and "boys are slower than girls, don't worry" and friends and family saying "don't worry - all kids are difficult - all kids can be a struggle - oh my kid does that, it's normal" each and every time you voice a concern - you start to feel that you have no voice at all and you begin to doubt your sanity. I honestly sat and cried when the SENCO at DS1's school told me she thought he needed to see a paediatrician to be assessed. She was the first one that actually LISTENED and didn't tell minimise my concerns.

And I know many other parents that have dealt with this as well. THIS is why children are often not assessed or given support early enough - because nobody LISTENS to the parents and their concerns - they just fling out offhand comments about how it's normal and not to worry. (and No ViviPru I'm not having a jab at you with that - I'm simply pointing out what happens in general)

ViviPru · 22/08/2013 13:06

I understand. We were fobbed off MASSIVELY when DP was taking the first steps toward a Dx too. It was horrendous and your post has made me realise how much I've since 'conveniently' forgotten what a struggle it was. Glad to hear your concerns are starting to be taken seriously now.

ViviPru · 22/08/2013 13:07

DH I mean! (newly married - can't get used to that!)

Trigglesx · 22/08/2013 13:14

ViviPru congrats on marriage Grin. If it makes you feel any better, about 2-3 years after H & I married, I accidentally signed my name with my maiden name - complete and utter glitch mentally on my part. It happens. lol

I'm a firm believer that GPs should have more training in child development so they recognise and are aware that these things need to be assessed as young as possible. People shouldn't have to FIGHT to get a referral for assessment.

ViviPru · 22/08/2013 13:18

Couldn't agree more. DH's GP's response to the suggestion that he might be dealing with a case of adult ADHD was to actually laugh in DH's face. You'd think it was the 70's still.

SunshineMMum · 22/08/2013 13:29

This reply has been deleted

Message withdrawn at poster's request.

muchadoaboutsomething · 22/08/2013 14:05

I also agree with triggles. Although this always sounds odd I do frequently think having a child with an obvious physical disability can be easier. My DS has cerebral palsy and can't walk. I can't be fobbed off about that, and while I wish all children were like that no-one will ever say that to me. He was also in the system from birth as he was very prem so i alsways had at least one consultant on side.

For what it is worth we still had to appeal DLA, and fight for treatment and qite probably a statement given it is a "medical/physical" condition rather than ane ducational one. That's the thing which is so pernicious with society at the moment, that there is still the need to fight and a temptation to put one peson against another. Even with the campaign (and this thread) there is a sense of come disabilities count and some (asthma, diabetes) don't. It really shouldn't be like this.

muchadoaboutsomething · 22/08/2013 14:11

sorry I should have spell checked that!

Dawndonnaagain · 22/08/2013 17:04

much you are right, this governments insidious little narrative has taken a strong hold on Joe Public. When did it come down to the deserving/undeserving poor? When this government took over. I am not saying that the last government was any better, but they did not create this narrative in the daily fail press.
We have in thought, at least, returned to victorian values and it's very scary.

CouthyMow · 23/08/2013 00:58

I will echo Sparklingstars comments about asthma - most people are shocked by how much that alone has impacted on my DS2's life. He is also physically disabled from his hypermobility syndrome and has ASD and suffers from encoparesis. He is 9, and tall for his age, and is more like a 5/6yo I the way he acts and behaves. The looks I get outside with him can on some days make me feel like never going outside again, and on others like I want to beat the crap out of people. The other side of my wonderful DS2? He loves nature, he is an avid History buff - he knows more about History than me! He is so kind and caring that he will cry if another child is upset, he is very environmentally aware, and is the most thoughtful, helpful child you could ever meet.

Then there is my wonderful, gorgeous, infuriating 15yo DD. She has ASD too, and she also has moderate LD's, mild hypermobility syndrome, cardiac problems and she is partially deaf. She has learnt to 'fit in' better than my DS2, but in a conversation with her, her issues are instantly apparent. However, she is one of the best chefs I have ever met, she is wonderful with DS3 (not so much with my DS1, but never mind...), she tries hard to do her best, and she got a 'B' in Health & Social care this year, with her extra help.

And 2 weeks ago, my 2y7mo DS3, who had already been dxd with multiple life threatening allergies, hypermobility syndrome AND hyperactivity 'with a high probability of ADHD' was dxd as having 'global development delay with autistic traits'. He is also the cheekiest, cutest, happiest toddler I know, is patient and kind with animals, and he loves climbing, taking things apart to see how they work, and playing horsey rides on people's backs. (Though that one doesn't go well when he launches himself at stranger's backs...)

I also have epilepsy and arthritis. I love Formula One, music, cross stitching, crochet, Cardmaking and papercrafting. I am a Lone Parent to four wonderful DC's, and I love them all.

Four out of five people in my house are disabled in one way or another.

We are a ragtag rabble, but the world is a brighter place for us being on it!

sparklingstars · 23/08/2013 06:35

CouthyMow and thank goodness that you are.

My DS struggles with anger sometimes, he is learning now to tell people to leave him alone and is also learning when he needs to leave people (me!) alone because he is winding me up. He's not on the spectrum as far as we know, he's just like it at home so it's probably my poor parenting TBH. The real pain is if he is not doing as he is told, e.g. clearing away his dinner plate and has to be told several times then he can get angry and then end up with a mild asthma episode so it's a fine line between him having to do as he is told and not having an episode.

Sirzy · 23/08/2013 08:00

Sparking - I have found a link between DS asthma and his anger, when he is in the early stages of an attack he will get really angry and lash out for no reason. I assume its to do with being scared of how he is feeling? We have the same issue with tantrums triggering attacks which makes it hard to control his behaviour without giving in to stop an attack.

Couthy wow you have your work cut out, but what a fantastic bunch you sound.

ArthurPewty · 23/08/2013 08:01

This reply has been deleted

Message withdrawn at poster's request.

sparklingstars · 23/08/2013 11:23

Sirzy with mine being older there are less of the tantrums because he is able to verbalise how he is feeling. I will never forget sitting with him on the verge of calling an ambulance with him saying 'Goodbye Mummy, I know I am going to die soon' [cry]
He doesn't tend to get angry during an asthma attack, presumably because of the age difference - he's ten next year.

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