Friday, 25 April 2014

Undiagnosed Children's Awareness Day

"What on earth is that?" I hear you say. And a few short years ago I would have been saying the same. How in the 21st Century, can doctors in the Western World not work out the underlying cause for a collection of symptoms? But you would be surprised. There are many, many people living without a name for their difficulties, disabilities and challenges. Most of them are children - because some do go on to receive a diagnosis as time (and medical science) progresses, and also because some of them don't grow up to be adults. Too many. And children without a diagnosis are more likely to receive poorer care and support as with a diagnosis, comes understanding and a degree of expectation. There is none of this without a name.

Bringing up a child - or children - with additional needs of any kind is exhausting and often overwhelming. There is a wonderful essay called "Welcome to Holland" by Emily Kingsley which sums up so eloquently the painful journey parents of children with additional needs and disabilities go on. It is now a moving YouTube video here.

You see, without a name for those symptoms and challenges your child or children are struggling with - that you are drowning in as a family, you become even more isolated. There is no signpost to direct you to a support group, someone who knows what you are going through, no online information on what to expect.

Diagnoses open doors, and sadly-  without one you can feel utterly alone.

What IS shocking is how easily this could be your kids. Or mine. Because that's the isolating position we find ourselves in here - a growing collection of symptoms, many of them with a name but no definitive umbrella term to explain why we are dealing with so many different things.

It would be all too easy to get constantly caught up in it all, and sometimes we do. It's unavoidable. But most of the time, we are parents with four wonderful children. Maybe life isn't exactly what I planned, but in many, many ways, it's actually better.

If you haven't seen it yet, I urge you to see the amazing video Renata from Just Bring the Chocolate has made for Undiagnosed Children's Awareness Day.

It is a masterpiece which has taken many hours of work, and which carries such an important message-

Children with or without a diagnosis are still children and deserve the chance to BE children. No one with additional needs should be defined by their label - and those without one deserve their childhood as much as any other child. The intensive focus on symptoms whilst seeking diagnoses should never hide the child within.

Which made me think.

Because in recent weeks I have become increasingly aware how we are blurring the boundaries between childhood and adulthood for ALL children, and in seeking to support children's "rights" and "needs" I believe we are actually depriving of them of their one fundamental right - the most important of all, to be the child that they are.

My sixteen year old had blood tests and I couldn't access his results without his permission. Yet he's a child, and I'm his mother with parental responsibility. My twelve year old is supported at school through the CAF process and, as a twelve year old is officially supposed to be present for meetings, involved in them and receive copies of the minutes. He's twelve. With Autism. So his emotional age is considerably lower than twelve - but that's almost irrelevant as in my opinion any twelve year old would be too young to hear adults discussing them in this way.

Then there are the doctors who discuss scary medical conditions in front of young children, even sharing diagnoses (like our son's Aspergers Syndrome) with the six year old child without consulting the parents to find out whether their views on this.

Children should not be "seen and not heard" they DO have rights and needs, but the most fundamental of those is to be allowed to BE A CHILD. And that means being treated as such. In an age appropriate manner which always recognises the need to preserve that innocence which - once lost, can never be regained.

Children with additional needs often grow up faster than their peers, facing issues most adults never have to consider. For those without a diagnosis the world can seem an uncertain place. If we cannot give them a diagnosis, at least give them their childhood.

Think out of the box - see the child underneath.

Tuesday, 22 April 2014

Eating "Free From" Food is NOT a lifestyle choice.

In my inbox this morning was a request to complete a short and sweet questionnaire about "freefrom" foods. Right I thought, bit of an expert on that one... should take me a minute! So I duly clicked on the link... how long could it take?!

Well that depends on whether you find the questionnaire possible to complete in the first place, and whether it triggers a response like this or not :-

Here's why I am getting so hot under the collar about an innocuous set of questions? Well here they are:-

I'll tell you what my "attitude" towards them is, that they are an essential, vital form of sustenance for my children who would otherwise become very ill. Foods which are sold as if I should be grateful, which are often poor in nutritional content and high in price, which we cannot do without.

It wouldn't be so bad if the first option were "Medical Necessity" - because after all, that is the main
reason the free from industry exists, even if it has become something of a fad amongst many.
Eating "freefrom" food is not a lifestyle choice for the vast majority, it's a no-alternative, medically imposed way of life and to suggest otherwise is both ignorant and offensive.

So when faced with a questionnaire asking me to rate answers as to why I choose "free from" food in order of importance, seeing options such as "helps weight loss" and "they are lower calorie" makes me not a little cross!

Friday, 18 April 2014

Celebrating Difference

So why, you may ask, did I choose to create a Blog link up which celebrates difference?  Because recognising and embracing difference at all levels is our biggest line of defence against prejudice.

Several years ago I wrote:-
There is much written at the moment about the Children, Schools and Families Bill, Child Protection and parenting choices. What most of you reading this or any other Blog today might be unaware of is the potential impact across all society that this Bill might have had if passed (and still might have if Labour are re-elected and have a second attempt) which extends beyond how you choose to educate your children. It challenges something totally fundamental in our society. Not only does it challenge the right parents currently have to choose how their child is educated but introduces an unpalatable advance of the erosion of individual choice and independence to be and live as we choose. 
The CSF Bill which has largely been dropped due to pressure from Home Educators who not only objected to State interference in their right to educate their children as they see fit but also pointed out the obvious - that a HE child is no more or less "at risk" than any other school educated child, all of whom have long periods of time at home. The unfortunate Khyra Ishak was indeed deregistered from mainstream schooling but was not, by any stretch of the imagination Home Educated. But suspicion is the child of ignorance and choosing a path for your family which is in any way different from the vast majority should not leave you open to prejudice. Yet Ed Balls has stated he fully intends to "provide proper protection to home educated children" if Labour are re-elected.
There is a veritable industry that exists to "safeguard children" now which must therefore justify its existence on a daily basis. So deep is the desire to prove themselves at every level this "protection" system is trapped looking for cases and fitting individuals into their preconceived moulds. There is no room for uniqueness, for unorthodoxy, God forbid you do not choose to or are unable to tend towards the mean. This offers up a perfect opportunity to convert misunderstanding into accusation.

Monday, 14 April 2014

Same Difference Link Up

Have participated in a number of Linkys recently, both here and on my other two Blogs I have really appreciated reading others' views, experiences and perspectives. I have given a great deal of thought to this Link Up of my own and hope as many of my readers will join in!

"Same Difference" is a new Link Up for posts which aim to help you see the world differently, offer a new perspective on life and enlighten, inform and provoke.

This includes the mundane as well as the unique, anything that challenges the assumptions of society or attempts to put any viewpoint in a "box". I'm all for challenging and questioning! I often mention the "Bigger Picture", trying to put individual experiences into the wider context - and equally I regularly focus on my individual family.

"The Same, but Different" - Same result, different path?
  • Does your child have additional needs which make milestones more difficult to reach - celebrate them here! 
  • Do YOU have difficulties which mean whilst ostensibly the same, make you feel different?
  • Do you have a different slant or outlook on life? A wry comment to make about society?
  • Do you have a child with wonderful quirks and/or who makes comments which make you think about the mundane in a new light?
  • Share a photo which prompts a new perspective
Almost anything goes , this linky is to celebrate difference, difference in views, abilities, achievements, anything! 

(A bit like "Different Strokes" but that name is taken!)

How to join in!
  1. Add your link below to enter
  2. Add my Linky badge to the bottom of the post you are linking up
  3. Visit, share and comment on some of the other posts.
That's all! Get linking :)

Here's the Badge Code:-

<a href="" target="_blank"><img src="" style="border:0"/></a>

Saturday, 12 April 2014

Expressions - a portrait link up

Not a human portrait for "Actually Mummy"'s Expressions link up, but a special one I am proud and pleased with it nonetheless.

This old boy has soft tissue sarcoma, a heart murmur and the cat version of Alzheimer's (or similar). He flits between looking as if he's at Death's Door and mustering enough strength to hound anyone who walks in the utility room until they feed him. Not so bad for eighteen years I guess.

This photo is wonderful because he looks as he always has done. Freshly groomed and enjoying the sunshine. Even if he can't quite remember what he's doing there....

Expressions - Actually Mummy...

Wednesday, 2 April 2014

2nd April - World Autism Awareness Day

April 2nd is World Autism Awareness Day - and across the world buildings are being lit up with blue light to "Light it up blue" for Autism Awareness. 

ADHD is a condition which is commonly co-morbid (often occurs with) with Autism, and certainly we have both here. So for us, it's "Light it up PURPLE" day as we raise awareness for both conditions. Both very real, both still very misunderstood. I recently wrote about ADHD Awareness here  and there is an excellent online leaflet about Autism Awareness here.

Living with Autism 

It didn’t start well.

After a traumatic labour with my eldest son four years earlier I was extremely apprehensive at the thought of going through a similar thirty hour labour. Given the inescapable fact that I was hurtling past full term carrying what the scans testified was a baby with a large bowling ball for a head I wasn’t desperately encouraged that the obstetrician's view that “second time was usually easier” could possibly be true.

It wasn’t. Nearly three weeks overdue I was induced and my baby became very, very stuck. Like so many mothers of children with disabilities I frequently find myself wondering what, if anything, might have “caused” his difficulties? What could I, should I have done differently? Because nearly losing your baby before he even makes it into the world is not a good start. Not emotionally, not physically...... For either of you.

It was a traumatic first few months. Reflux aside, I knew things were not quite “right”.

Tuesday, 1 April 2014

Why I want my kids to fail.

With the Summer Term looming on the horizon, I read Prince Andrew's views on "Failure" with interest, and felt them particularly appropriate in the context of next term with its exams, sports fixtures and competitions. ("One minute read" version available here.)

I do firmly believe that we have become too frightened of letting our children "fail", miss out or become disappointed. How many place little gifts in every layer of "Pass the Parcel"? How many give prizes equally to everyone at parties, competitions and events?

How many schools actually have real winners on Sports Day?

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