I've had a revelation today about having a child with a disability.

[oldteacher]

Had a thought today whilst starting to prepare for DS's DLA appeal. When you find out you have a child with a disability, all of a sudden you have to be everything. You are their parent, but also their carer. You start to acquire more medical knowledge on their disability than most doctors would seem to know. You have to become more succinct in 'lawyer talk' and being able to push your case forward. You have to become a spokesperson to the general public to make people aware of the condition and have more understanding.

It is similar to becoming self employed. You may be excellent at doing something/providing a service but when you work for yourself not only do you have to be 'everything', you have to be excellent also in those areas where you have no experience- e.g. marketing, sales, publicity, financial stuff and tax returns.

No wonder I'm feeling pooped! On top of caring too. Anyway, as you were, was just a bit of a revelation to me today.

You are so right oldmum, we have to become many things.

We do it because we want the best for our kids even if it grinds us in to the ground.

Try to take some time out for youself occasionally, personally I go to work for a rest. Lol.

And you don't get paid for it.

And professionals still think it's ok to patronise you, despite you being more qualified on occasion than they are.

And at the beginning it is so hard, because it is a huge learning curve, and you don't realise just how hard it is going to be, and when you get it wrong it is awful because you are trying your best to get it right in a world which you have no clue about in order to get the best help for your child, and now I've made myself cry. Can you tell I've had a shit day.

Aw, Hazey.

The roller coaster always climbs again x

Would also add an expert in education and your rights.

A mediator between home/school.

A diplomat.

Have the patience of a Saint, even when provoked and faced with the most incompetent of people.

An expert in all areas of need.

And still be a mum, find time for fun and games, and to be a taxi driver to your teenagers!

Oh and a bit of time for your partner too!

I agree it's a huge learning curve. And every new hurdle makes you feel like you're starting all over again.

It is exhausting. Worth it, obviously, but still exhausting.

It is hard and it is exhausting and sitting up all hours when its quiet researching this and that.

But ohhhhh! when you have tried a strategy for a few weeks biting your nails and pulling your hair out nearly giving in...........................

And suddenly it works! THAT puts a big grin on your chops and you know its all worth it :)