'This Is My Child': our long-planned campaign on children with additional needs

[RowanMumsnet]

Hello

As some of you will remember, we started this thread a few months back to get your input about a possible campaign around children with additional needs.

The thread was hugely informative - thanks very much to everyone who gave their views. Many of you were asking for a broadly-focused campaign encompassing visible and non-visible disabilities among children, teenagers and adults, and across many platforms (poster advertisements, television campaigns and so on). Much as we'd like to do this sort of thing in an ideal world, realistically we're bound by the resources that are available to us. We've also found, over the years, that campaigns with a very specific focus can do much better than those with more general messages. In addition, we're mindful that many of the big campaigning organisations in this space have already undertaken more general awareness-raising campaigns to do with capacities and needs of people with disabilities, and we try not to re-invent the wheel (although we're always happy to add our voice to such campaigns when asked).

So we've decided to go with an awareness-raising campaign focused on the ways in which caring for a child with additional needs can change a family's life, and the myths about disability that can have negative impacts on such children and their carers. We're going to call it This Is My Child (again, thanks for all the input) as we think it's simple, arresting and suits the aims of the campaign best.

We're going to be addressing myths like:

MYTH: children with behavioural disabilities are just naughty and need a firm hand
MYTH: people in receipt of disability-related payments are likely to be 'scroungers'
MYTH: children with additional needs in mainstream schooling are drawing resources and attention away from other children
MYTH: it's easy to get a Blue Badge and mobility vehicles
MYTH: a non-expert can accurately judge the capacities and potential of a child with additional needs

We're going to be putting up a myth-busting page (similar to our We Believe You myth-buster here) which will be heavily featured across the site and promoted from our social media accounts, hopefully with some mainstream press coverage. We're also going to be featuring guest blogs on the topic and holding an event on Twitter using the hashtag #thisismychild; watch this space for details.

There are a few things we'd really like your help with:

1. Do let us have suggestions for myths you'd like busted (there's a limit to how many we can do, but it would be great to hear your thoughts).
2. Do you have any Top Tips for how to deal with situations in which you - particularly as a parent or carer - have been subject to ignorant or hostile responses from members of the public when out and about with your child? We'd love to put together a list of ninja ways to defuse, inform or simply get rid.
3. To go with the 'This Is My Child' theme, we're asking for MNers who are parents of or carers for children with additional needs to send in pictures of their child, which we will use for a photo gallery on the site. These can be completely anonymous and needn't be linked to your RL or MN name if you'd rather not; the idea is to personalise the issue for members of the public. If you'd be up for doing this, do please send in a digital photo (a roughly 500-pixel-sized image in a jpg, gif or png format) along with a caption (which can be pretty much anything you please: 'This is my child. He's eight and he loves Star Wars' - that sort of thing) to [email protected], with the subject heading 'This Is My Child, FAO Campaigns Team'.

Thanks for reading this far - as ever, do please let us know what you think.

On son with ADHD

He can't have ADHD, he's not naughty/aggressive/violent

All boys are like that (so why is mine singled out by teachers as being exceptionally distracted/lacking in concentration)

Thanks for this

Myth: 'there was no such thing as autism in my day'
Fact: yes there was! OK it wasn't called autism back then (probably childhood psychosis (sp?)), but it was still there.

Myth: 'autism is on the increase'
Fact: diagnosis and awareness is a lot better now, so more people will be getting the correct diagnosis, so it will seem like its increasing.

I'd like my DS1's teachers to take heed of the following (and so would he):

Just because he has produced very little or very poor quality work, it does not mean that he was not trying. He may have been trying twice as hard as anyone else in the class.

Telling him that he needs to be more organised will not actually make him more organised.

It might be a good idea to consider what the other children around him and you (as the teacher) are doing, rather than pre-determining that the problem must be him.

Just because he struggles in your classroom or the school playground doesn't mean that he has 'no social skills'; he does have social skills and demonstrates these at home and with his friends, but finds it hard to cope at school.

Professionals are not always the experts.

A great campaign MNHQ I just want to expand on what arbitrary said.

Professionals are not always the experts... Parents are likely to be experts on their children and should therefore be listened to, have their thoughts taken account of and not be talked to as if they are neurotic or suffering from munchausens by proxy (or whatever it is called now).

I also agree with starlight we are not all on the spectrum. Many of us have little quirks but these do not impact on our lives every single day!!

When introduced to an AS child, sticking your face in theirs is not making them feel comfortable or inclined to speak to you. Also they are not stupid, speaking to them as if they are a young naughty toddler is not right. They do understand what is being said

... and not all children with developmental delays/disorders will not get there in the end (some will but a lot don't).
and no, I don't want to hear the story how somebody's postman's second cousin's son did not say a word until 5 and is no a brain surgeon.

and thank you MNHQ for starting this campaign!

To all public sector and NHS professionals. It is illegal to do assessments of children against the parents knowledge, and share data and information without consent in order to build a case against them for tribunal.

I also agree with 'They all get there in the end'

Get where?

Where do the children with sn who are excluded from school get to?

Where do the children who can't take GCSE's because of their SN get to?

Where do the children who can't go to school get to?

Yes Blackpool, telling her that she needs to get over because it X Will Be Expected at Secondary School, or when it comes to Exam Time, orAat University, or In The Workplace is many years, or whatever else it is that the particular teacher has decided will scare parents that day. If it were just a case of telling them to 'stop being silly' or to 'be organised', the parents would have done this years ago and saved themselves and their child a lot of trouble.

As an extension to the professionals are not the only experts point, I will add that it is often a mistake to talk absolute rubbish about things you know bugger all about to parents because sometimes it just happens that they do know about what you're talking about.

For example, it's generally a bad idea for secondary school form/PE teachers to tell university lecturers about how universities deal with student disabilities and then refuse to accept that they don't know what you're talking about when they inform you about what actually happens. Just because you had to take written notes when you were at university back in the day doesn't mean that students still do it the same way, nor does it mean that there aren't adjustments in place to support students who can't do it themselves. Although, I'd've thought that even people who've never had anything to do with universities could figure out that the statement 'he'll never be a scientist if he doesn't write things down legibly' is total shit.

I agree with the person up thread who would like the myth busted that the sate (NHS and local authority) provides the help and therapy that is needed, or even knows or understands what is needed. The so-called developmental paediatrician who diagnosed my DS had never even heard of the only evidence-based treatment that exists for his condition. We have spent the past arranging and paying for this treatment ourselves with no help, financial support, advice or anything else, from anyone with this.

And in terms of advice for people in general about what NOT to say to a parent with a SN child (echoing also some other's points):

Oh how terrible for you!
I'm so sorry for you.
But he looks normal.
What a terrible pity, he is so beautiful/cute etc.
They all get there in the end (where do they get?).
Einstein
Holland
Oh don't worry when he does start talking you won't be able to shut him up, ha ha ha

And my personal worst one:

"You just need to talk to him, then he will learn to talk!
Oh me, I'm really crazy (said with a shake of the hair to show how "crazy" and amazing they are), I just talked to my baby all the time, I didn't care what people thought (ha ha ha), and so he learned to talk really early!"

BTW I think this is a wonderful idea for a campaign and would like to be involved in any way I can...

Parents are the experts on their child. Professionals are simply people who are paid to do a job, who may or may not be experts.

As an aspie mum with an ASD son: I'd like to say, not all of us are rigid and routine driven, not all of us are good at maths and some of us have great imaginations

Brilliant idea for a campaign . Firstly I think people need to realise that having a child with a disability does not automatically entitle you to a free car and driving lessons! I am still hauling two children with asd on and off London buses , also I know this has been mentioned before on this thread but girls can have autism and finally could people please try and be a bit sensitive when telling me about children far younger than mine who sleep far better than dd and who can speak at nine months!

she does not look deaf? what the hell do they expect deaf child/adult to look like? did you respond and you don't look stupid either, but looks can be deceiving?

ok back to reading though

Even the most severe kids with obvious disabilities slip through the net. It is much easier to leave those to get on with it otherwise they then start to cost too much. This can not only isolate the family and child from school and social settings but most of virtual and real life. It segregates the disability community as well as the disability/NT community. Life can be so dire and secluded when nothing is going right and there is no support from anywhere and you are left to bring up your family. Sometimes all I need is a quick phone call for things to seem brighter and still nothing. It all depends on the size of the heart you are targeting, whether you have reached them and they are able to listen to go give. Yes there are stories linked to why I have said what I have, too many to mention.

Myth: Children with disabilities require thousands of pounds of 'support'.

Fact: Well targeted support from appropriate trained teaching staff often require as little as a pencil and paper or a couple of classroom adjustments. It too 2 TERMS to move my ds' coat peg to the end of the row, resulting in daily punishment for not hanging his coat up sensible due to his sensory issues.

Myth: A child who has lots of outside agencies involved with their family is getting lots of support.

Fact: The family are getting lots of meetings and paperwork. This often has little impact on outcomes and becomes time-consuming, time-delaying and confusing.

Myth: TA's create dependence.

Fact: Inadequately trained or inappropriately recruited TAs cause dependence.

Myth: Challenging behaviour is when a child is aggressive

Fact: Challenging behaviour is also when a child is passive and withdrawn. He might not cause problems in the classroom, but his behaviour is causing HIM problems in his ability to access his education.

Myth: Teachers, SEN professionals, Advisory teachers, TAs only want what is best for your child.

Fact: Many do care about your child, but your child is NEVER their only agenda and their agenda's often compete. As a parent you are almost always the ONLY person who's agenda is solely your child.

If your child is violent toward siblings, one of the interventions threatened offered, should you continue to request support, is placement of your NT children into Foster Care for their safety.

Ok then, this is my child, or one of them.......

DS at birth was diagnosed with a serious heart condition, one that will never be repaired, just made the best job of. He was then diagnosed with Down syndrome. A few year down the road diagnosed with SPD. To later be diagnosed with autism and PDA.
This combination has always made him quite difficult and worrying. He is very aggressive and easily set off. Then you have the worrying of his anxiety and not having to be stressed due to his heart and the fact he can't brush his teeth and at risk of endocarditis which is fatal. He is also prone to being overweight and thyroid issues but also has mobility problems. Just a snippet of the worry.
He is stuck at home 24/7 as he is unable to access the real world. He is also 24/7 supervision, do not expect to be able to do dishes or anything else while you are looking after him. So my housework starts when DH comes in from work. Apart from him I see no other adults, talk to no one and get to do nothing unless its online.
When we were able to access outside I was often asked should he be out in the community. Even the profs have threatened institutions which possibly have come on a long way from what we think but is this right when said profs are doing nothing to help DS.

and yes yes to the myth busting that our children get help and support from the NHS, LA etc.

All that's needed is honesty, right across the board from dealing with profs to public.

My child is deaf not stupid. Please remember that when you are patronising speaking to her.