What's changed....

Back at the beginning of 2011,I first met a lady I now call a friend.

This is the first thing of hers I read, and I remember thinking then "I like this woman already!". The other day she laughed when I said I still had her original blog post printed off in a folder of very early ASD Ashford stuff.

The sad thing is, that as you read it back now, you can't help but think what's changed....

Why is it that when you think you have it all under control, it all goes pear shaped?

Why is it that when you have read everything you can about your children's conditions, another one pops up to knock the wind out of your sails?

Why is it that when you think your "mainstream" friend "get's it", they suddenly say something which makes you realise they absolutely don't!

Why is it that your children's conditions cause such mayhem and turn your life upside down in a way no one can understand unless they've been there?

Why is it that people think it's ok to judge your children and you without asking one question?

Why is it that everyone has sympathy for the child with no vision but no sympathy for the child with autism?

Why is it that you find yourself apologising to "friends" for having a moan?

Why is it that you feel guilty that your "mainstream" child doesn't get enough attention?

Why is it that you know more about your child's condition than most doctors?

Why is it that you struggle to cope with the extra demands with little, if any, sleep?

Why is it that you struggle to cope with little, if any, help?

Why is it that we get to choose from 30 special schools in a county rather than 30 mainstream schools in a town?

Why is it that our children are at a higher risk of abuse but no one teaches them what is acceptable or not?

Why is it that our children are not given a communication aid that people understand means "an adult hurt me"?

Why is it we have to beg and plead to get the help our children need?

Why is it that we have to act grateful for every little thing, things our mainstream friends take for granted?

Why is it that we do this with little, if any, financial reward?

Why is it we can't attend mainstream venues without ringing ahead to check how busy it is, or does it have wheelchair access or are there Braille signs?

Why?

Because we live in a self-centred, "let's sue" Big Society!

Mr. Cameron, get real. You should know better. It's all well and good talking the talk, we need you to walk the walk! We need you to take responsibility for your Government's actions. We don't want to hear about previous Government's problems - sorry but I spend the day with a 6 yr old and two 5 yr olds and I don't accept "it wasn't me" from them so why should I accept it from grown men who are paid to know better.

Labour gave us Aiming High and ring fenced it! You've given us cuts and little hope!

The outcome of your cuts to disabled children will be a vast expense to the Government - children in care will cost you a lot more than carer's allowance.

We knew you would never understand the real world we live in, despite your own very sad experience but a small part of us hoped.

When will you talk to the real parents out there? When will you make the changes we need to allow us time to actually be "mum", not "carer, secretary, employer, campaigner, letter writer, beggar" or one of the many other titles we hold?

When will common sense prevail and the much needed short breaks allow parents to have a short break too?

When will you realise that sleep deprivation is a recognised form of torture and needs to be addressed?

When will safeguarding our children be a priority over the risk of an employment tribunal?

When will you actually start helping us - the people who voted - and not schools in Pakistan?

When will your cabinet members for Children and Families actually respond to emails?

Mr Cameron, you have the chance to make a real difference to a lot of people, this isn't "Game of Life", this is not a practice run, this is the real thing! We need your help and we need it now! We can't wait five years for another government, only for them to say "it wasn't me"!

We do all we can for our children because we love them dearly but love doesn't pay the bills or give us a good night's sleep. Love doesn't change the budget, nor does it open all venues to our children. Love doesn't give you the ability to home school your child nor does it mean you can choose a suitable reputable safe special school of your choice for your child. Love does not mean the public will accept your child in all circumstances nor does it mean that everyone else will love your child.

You don't have to love us or our children but you do need to help us! Otherwise, how will you sleep soundly at night?

Kindly shared with permission from Debs Asplands blog Choas in Kent.http://chaosinkent.com