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?

Wednesday, 26 March 2014

Mother's Day - What my Mother Taught Me

Mothering Sunday is fast approaching, the fourth Sunday of Lent and thus a moveable feast in line with Easter and the lunar calendar.
"Although it's often called Mothers' Day it has no connection with the American festival which shares its name. Traditionally, it was a day when children, mainly daughters, who had gone to work as domestic servants were given a day off to visit their mother and family."

"It also holds religious significance, since centuries ago it was considered important for people to return to their home or 'mother' church once a year. So each year in the middle of Lent, everyone would visit their 'mother' church - the main church or cathedral of the area. And most historians think that it was the return to the 'Mother' church which led to the tradition of children, particularly those working as domestic servants, or as apprentices, being given the day off to visit their mother and family."

But what does it mean to you?
Sixteen years ago it was my first year as a mother, and it happened to coincide with my birthday. A special day indeed, my first as a mother myself, having previously only considered the day in the context of myself as a child. My own Mum is amazing, and I count myself incredibly fortunate to have had such a stable and loving environment to grow up in, nurtured by loving parents with a steadfast, caring and capable mother. A hard act to follow.

My first Mother's Day was also particularly poignant since (as is so often the case) my life failed to live up to the idealised master plan I intended for myself as a naive child. I found myself a single mum, working long hours miles from my family coping with a baby with chronic reflux. But like my own mother and millions of others, it takes a lot to get me down, and such trivialities are relatively easy to ride through at the tender age of 24, when sufficient sleep is a pleasant change rather than a pre-requisite for sustained sanity....

Sixteen years and a whole ocean under the bridge and I am the proud mum of four, with a loving husband, life partner and friend to share life's ups and downs. The learning curve of life has been as steep as any climbing wall at times, but Mother's Day is when I celebrate my greatest achievement in life - my children and my status as their mum. I'm far from perfect, but like the vast majority of mums across the world I put my children first and strive to be the best mum I can be.

For me it is also a day for remembering the simple pleasures of being a mum, for forgetting my status as nurse, social worker, advocate etc. Like many mums of children with disabilities and medical conditions, it's all too easy for life to become a round of caring and meeting additional needs, fighting their corner at school, ensuring they have the best opportunity to realise their potential despite the challenges they face. But on Mother's Day I will be focussing on the normal, the mundane, the oh-so-valuable and special daily aspects of being their Mum. So in that respect my childhood master plan did indeed come to full realisation, albeit not as simply as I imagined. Because from an early age, more than anything in the world I wanted to be a Mother, a Mum, someone's Mummy. And it is an incredibly fulfilling job on every level, bringing with it more challenges than I could of dreamt of, stretching me more than any corporate job and providing the deep job satisfaction any employee dreams of. It is, without a doubt, the best job in the world.

One of the most important things my own mother taught me is to be resourceful. Even when life doesn't pan out as anticipated there is always a way through. There is always hope, always a choice and an alternative path. Such a valuable life lesson, and one I hope my children will learn from me too.

So to all mothers everywhere, and in particular to my own, whatever your day means to you, I hope March 30th is everything it possibly can be. I will be shuttling between dancing and Cross Country, doing what I love most, with those who make me complete.

Sunday, 23 March 2014

When does Caring become Comedy?

This might seem an utterly insane post title, but bear with me.

I have four children with additional needs. I used to say "3" but #1 son has more recently developed problems of his own. Nothing major, but foot surgery (both feet) for permanently dislocated toes due to a connective tissue disorder is definitely not run-of-the-mill.

The appointments for my brood, plus my own (I have two autoimmune diseases, osteoarthritis and pretty severe allergies) and my husband's (glaucoma, the genuine full-on kind with optic nerve damage) are utterly overwhelming at the moment. We average four appointments a week between us. Some local, some in London. And all of these understandably involve my participation - although I am excused many of my husband's eye appointments. I am invariably planning appointments, notifying schools, ferrying children around and attempting to ensure clinic letters are communicated amongst professionals involved with our family. It's a full-time, thankless job, which prevents me taking on alternative employment.

Knowing that there are many others worse off, and grateful for the support we sometimes get I don't often moan, but there does come a point beyond which "normal life" (whatever that is) ceases to become an option, at least in the short term. This week, we undoubtedly pushed through that boundary.
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