Hey Fam!!! hope you all are having a good day? I found this very interesting article online today while looking for articles for something am researching on. Parents of kid(s) with special needs gto through a lot..... especially "the mums"... I can't even begin to tell you guys my mums story (story for another day). Please read the story and accounts of these "super mums" and be encouraged. You are not alone in the struggle to protect your loved ones.
Jane
McCready is used to her 10-year-old son being gawped at "as if he were a
circus freak" but she will never be reconciled to it. "Children are
one thing, they don't know any better. But these are adults. They look at
Johnny and their mouths fall open and they just stare. And I think: didn't
anyone ever tell them how rude that is?"
Johnny has
severe autism and learning disabilities. "He looks like any other
child, but he behaves oddly – for example, he might sit there banging two toys
together – and he sometimes makes strange noises." Especially when he was
younger, he might have a massive meltdown – at the supermarket checkout,
for instance. "I'd feel 300 pairs of eyes on us – all watching us, all
judging us for being disruptive and difficult," says Jane.
Perhaps the worst day was when, at the
swimming pool, another mother pulled her child away from Johnny "as though
he had something catching".
This, she
says, is what you are up against when you have a child with special needs:
other people tend not to be very kind. This is particularly awful “because you'veS already got so much on your plate as it is. The odds seem stacked
against you, and if people just gave you a bit of space and support, it would
go a long way. But the opposite is more often the case: you're struggling to
start with, then people knock you down further. They make assumptions about
you, they find you wanting, they treat your child as though he or she is
dangerous or badly behaved. It's soul destroying. It's so bad, so hard to deal
with, that I have friends with special needs kids who don't even take them out
any more."
Jane, 49,
who lives in south London, turned to Mumsnet to
vent her feelings; and she was not the only parent in her situation to do so.
Mumsnet members who didn't have children with special needs were shocked at
their stories, and so too were the women who run Mumsnet. "We realised how
incredibly hurtful some of the behaviour they were describing was, and realised
we should do something," says co-founder Justine Roberts. "It's about
letting judgmental feelings go and stopping all the tutting from the sidelines.
"The
truth is that it's incredibly tough to have a child with a special need such as
ADHD or autism. In many cases, it's a 24/7 job and to have to suffer the
prejudices of others on top of that is just too much. There's a strong
feeling on Mumsnet that how we look after our most vulnerable says a lot about
our society and you don't get much more vulnerable than children with special
needs. So we need to up our act a bit, as a society."
To that
end, Mumsnet this weekend launches This is My Child, a campaign aimed at getting
us all to think a bit more about the realities of life for families with
children who have special needs and to check our behaviour
accordingly.
"A
little bit of help goes a long way," says Jane. "One time Johnny
was melting down and this woman approached me. I thought she was going to
complain – you get people who say things like, all he needs is a good
slap. When she said 'What can I do to help, dear?' I could have hugged
her. It must have taken some bravery for her to do it, but it made such a difference
to me. I felt someone was on my side rather than the usual wall of
hostility."
Claire
Champkin, 40, who lives in Twickenham, Surrey, knows just how Jane feels. she
says the biggest difficulty about life with six-year-old Toby is the negative
attitudes of others. Her son has moderate-to-severe autism, and is largely
non-verbal, but dealing with the realities of his condition pale next to
dealing with the unkindness she encounters from strangers who decide for
themselves that he is simply a badly behaved child with an inadequate mother.
"One day we were in the park, and a father who was sitting on a bench
pushed his glasses down to the end of his nose and sat there staring at Toby in
evident disapproval. I felt like heading across to shout and swear at him, but
you can't do that.
"What
do people think gives them the right to behave that way? And the irony is, they
think they're making a judgment on my child's bad behaviour."
Amanda
Marlow, 43, who lives in Milton Keynes, says she has survived by growing a skin
so thick she doubts anyone's disapproval could penetrate it. "Sometimes I
think if I marched through the shopping centre with 'fuck off' written on my
forehead, I couldn't be more obvious about it," she says.
She has
four children, twins Elizabeth and James, 13, Oliver, seven, and Alex, six.
Elizabeth has Treacher Collins syndrome (which causes craniofacial
abnormalities); James has Asperger's syndrome and Alex has severe autism.
"What
I'd like people to understand," she says, "is that these are my
children. This is my life. It's not a bed of roses, but we try to make the best
of every day. What would be nice is if people were kind and considerate once in
a while, and gave us a bit of space. We're dealing with issues that most
people haven't got a clue about, and it's intrusive when you get someone coming
up to you and saying, he needs a clip round the ear when one of them has a
tantrum."
If Amanda,
Claire and Jane could ask the rest of us to do just one thing, it would be to
stop staring. "It's fine to do a double take, but once you've taken in
that our children have a disability, get on with what you're doing. It doesn't
give you the right to gawp," says Claire.
Beyond
staring, what angers Amanda is when strangers ask about Elizabeth. "They
say, what's wrong with her? And I say, nothing's wrong with her. She's
fine."
Claire
agrees: it's not a tragedy, she says, that her child has a disability.
"We don't need pity; we're a very happy family and we just
want to get on with our lives. I hate people calling me 'special' or thinking I
somehow have extra qualities that enable me to deal with all this. The truth is
that when it happened to me, I thought I couldn't cope.
"But
a very wise person said to me: 'You'll cope because you have to.' And that's
what anyone would do. Calling us 'special' or alluding to our great qualities
makes us different, sets us apart, and we don't want that at all."
What is
also irksome to many parents is when other people take it on themselves to
reassure them that all will be well. "I get that all the time," says
Ellie Grant, from Wiltshire, whose three-year-old daughter Roberta has the
chromosomal disorder Kabuki syndrome. "Roberta had hip dysplasia and, when
she was in plaster, people would say: 'She'll be walking soon enough and you'll
wish she wasn't.' That's so hurtful – the idea that when she does one day
walk, I'll wish she couldn't."
The other
thing they often say is how gorgeous and cute Roberta is, as if that is
somehow incompatible with a disability. The people you value most are
those who just treat you as they would any other family. I love it when people
meet us and they try to engage with Roberta, just as they would any other
child; that's so good. What I don't need is sympathy; I'm hugely proud of my
little girl and all she's achieved. She and her baby brother are the centre of
my world and the idea that people feel sorry for me is just so misplaced."
There are
around 770,000 disabled children in the UK and, says Justine Roberts, their
families deserve better. "A lot of it is about raising awareness about the
reality of their situation, and busting some of the many myths. There's a myth
that some disorders, such as autism and ADHD, are a fashionable excuse for bad
behaviour and bad parenting. Wrong: these conditions are real and disabling and
it is terrible that the parents and families of those with them are
stigmatised.
"Another
myth is that children with disabilities are given the help they need. In fact,
Mumsnetters tell us time and again about how little help there is, how much
they have to fight for everything they're given and how long it takes even
to get their child's condition diagnosed."
Another
myth, says Justine, is that language around disability doesn't matter.
"You get a lot of people who use words like 'retard' and 'mong' and for
some reason that's tolerated, while language that's racist or sexist or
homophobic definitely wouldn't be. We've learned how hurtful it is to families
where there are disabilities, and now we clamp down on it on the site – and
we'd like others to do the same. It really is important. It really does make a
difference."
What you
can do
• You
can't always tell when someone has a disability. Respond kindly, not
judgmentally.
• Don't
make assumptions about a child's potential based on a label. People with
disabilities have a range of capabilities, just like anyone else.
• If
people seem to be struggling, ask: "How can I help?" or "What do
you need?"
• Saying
"at least it's not cancer" is not helpful.
• If there
is a child with a disability in your child's class, invite him or her over to a
playdate, or include him or her on the birthday party list. Too many parents of
children with special needs kids say their kids miss out on peer activities.
• And one
last time: don't stare. Really, Just don't.
Enough said.....
CULLED Theguardian
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