'This Is My Child' Round-up
A few weeks ago, Mumsnet launched an awareness-raising campaign: This Is My Child. The campaign aims to support the parents of children with additional needs by busting a few unhelpful myths - and to open up a conversation about how we can all act together to make day-to-day life a bit easier for these families.
So many MN bloggers are already writing with powerful honesty - and often wit and humour - about the pleasures and challenges of life with children who have disabilities or additional needs. So, we thought it was high time we launched a regular #ThisIsMyChild round-up.
To get things rolling, Tania Tirraro - co-founder, writer and activist from Special Needs Jungle - has read through all your marvellous posts, and rounded-up a selection of them here.
The more people who share this post, the greater the impact of the campaign - so do please tweet about it using the hashtag #ThisIsMyChild. Now, over to Tania...
The Mumsnet #ThisIsMyChild campaign linky has got off to a fine start with an array of heart-felt and emotional posts, some from experienced SEN bloggers and some from those who don’t usually write about their child with special needs.
All showed a remarkable courage, tenacity and a determination never to give up on helping their children be the best person that they can be – whatever the extent of their disability.
In many ways, having a child with a special need frees you from today's oh-so-common competitive parenting. I was reminded of this when I read Steph Nimmo’s “Tiger Moth” post.
Steph wrote - “No longer am I that competitive, suburban mother running between ballet and swimming football; I don't care about those things any more.” I remember feeling the same release from expectation. Every achievement from then on is a triumph in its own right.
Joy at Pink Oddy dispelled a few myths about families with Special needs kids, especially the one where it’s all about bad parenting. She finished with a few facts about her son, that many of us will be able to relate to.
I LOVED the poetic post from Woman with Baby - and with two lines:
I want your acceptance
She couldn’t care less what you think
she highlights the gut-wrenching truth: it is us who need to feel the embrace of support that this campaign is all about - our children are sometimes not in a position to notice the stares of others.
Over at Cakes, Photos, Life the family are grappling with the news that their son has a secondary diagnosis of ADHD to nestle alongside the ASD he already has. This, as many of you will know, is a co-morbidity that is very common with children on the spectrum. Both my boys are similarly affected; however, they are now teens - and I want to say to Cakes, Photos, Life not to fear that he will, as she worries, have a life constantly medicated. The right educational setting can make a huge difference, as I have found, and often a mainstream setting just can’t provide the specialist interventions he may need, so please do bear this in mind.
A huge favourite of mine, Hayley at Downs Side Up has written a brilliant post about what to say to a new parent whose child has Down’s Syndrome. Hayley has a wonderfully warm writing style and a surname as unpronounceable as mine. This post should be an e-book or a pamphlet that parents in this position could send to friends and family who afraid of saying the wrong thing.
Tina at MotherGeek detailed the worried musings we all have as the news hits us that our child has additional needs - one that I really related to was: "If we go to a playgroup, they can interact with other kids - but Sam will have a meltdown and we'll have to leave - maybe we'll just stay at home, then..."
I can relate - Son1 was up and running at 9 ½ months; he would plough the ride-on right into the gurgling baby seated across the church hall, followed by angry glares from its mother. For me that meant one visit to baby and toddler was enough. Isolation swiftly followed.
The BeesleyBuzz blog tells a story that will be familiar to many parents whose children have Asperger Syndrome. The gradual awareness that things are not quite right, the to-ing and fro-ing as a diagnosis is sought and the miserable, exhausting experience of finding the right educational solution.
When she says, “We soon discovered that people were quick to judge …that we were the type of parents who were never satisfied, however much the school (supposedly) did to help”, I can visualise heads nodding up and down the land. The solution, for the Beesleys, is homeschooling - and I shall be interested to continue following their story.
Judy at Memoirs of Maternity relates the story of their son, Eli being born with talipes and having a new, more recent diagnosis of Benign Paroxysmal Torticollis.
"This is our 'normal'. Eli is our first born and we know no different." Judy says, though she has still been upset by the "nasty sniggers" and glances from other people.
Anne at Raisie Bay really paints a picture of what life is like with an ASD child - such a complex mix of often contradictory behaviours means every minute can be different from the last. Star is now developing Hypermobility Syndrome, which both Son2 and I have – another invisible disability that needs specialist physio and I hope she isn’t too badly affected.
Mummy Worgan describes a day out with her ASD son, Tom, and the vast difference in reactions they got from various people they encountered along the way. Jo says - "Look by all means, and perhaps ask, ‘Can I help at all, are you OK?’ I would be more than happy if someone did this."
This is just a selection from a plethora of powerful posts (see below) submitted by mums who sleep little, rise early, give constant care and grieve silently for the dreams of a life they never got to experience.
Instead, they make new dreams, maybe less glittery - but equally as ambitious. Dreams for their child to walk, to talk and one day to live as independently as possible.
When it comes to judging others, I think it is often true that you can get the measure of a person by how they treat others who are, at that particular moment, less fortunate or in need.
Bigotry and prejudice are practiced by the lazy - those who can’t be bothered to discover the truth for themselves and let the Daily Mail form their opinions for them.
I believe that in writing about our experiences and by campaigns like #ThisIsMyChild, those attitudes can eventually be broken down. So Mums and Dads - keep writing, keep fighting and most of all, keep supporting each other.