Wednesday, 21 December 2016

A New Dawn

So, it's been a difficult week in our house.

Yesterday we had the long, long awaited ADOS (Autism Assessment) for our Darling Daughter (aged 9).  And after a number of arduous, uncomfortable hours they confirmed what Mummy has known for so long - that she is also autistic.

This was both wonderful news and a bitter blow at the same time.

I had wanted to know.  I fought for the referral, God how I fought. The teachers, SENCOs, therapists, CAMHS consultants I have gone up against in the past are too numerous, hopeless and depressing to recount. Only for it to be SO GLARINGLY OBVIOUS when you actually get her in a room with the right 2 people.

But of course then the frustration sets in. The frustration at this deeply, horrifically flawed system that gives no continuity of care in this situation.  As everything, it's a postcode lottery.  Our county councils opinion is, if we can afford our mortgage (barely!), we can afford to fund our own care.  We can't 😢

So we got another leaflet, another list of charities to beg and bother 😥 Charities who are underfunded and over-subscribed, who will immediately try to recruit you to their fundraising team and offer to add you to their mailing list (for £135 ANNUAL membership fee!)

Of course there is the Cygnet course you can go on. And who can't free themselves up for 3 hours per week (more likely 4-5 by the time you add travel, parking etc) for SIX CONSECUTIVE WEEKS, during the day, term time (when your kids with additional needs are Home Schooled because THE SYSTEM HAS ALREADY FAILED THEM!!!)

So I argued, and I reasoned.  They placated with cries of what an amazing parent I am, how well informed, in tune, how facilitating, what amazing work I have done with my children, how there is no intervention above and beyond what I am giving them.


What if I wasn't able to do this all myself?  What about a carers break, y'know, ever???? What about if I couldn't do it? Because the day will come that I can't.

Anyone with special needs children will know that Babysitting is a foreign word!! There is a startling lack of willing offers, particularly from those nearest and dearest to you from whom you'd hoped for more.

Over the years, party and social invites will dwindle as less and less people want your unpredictable kids around, and there's nothing you can do - there's no-one ever to leave them with. Not even paid agencies 😥

So you become increasingly isolated, increasingly burdened but nobody cares. Turns out "Every Child DOES NOT Matter" - only the high achievers that affect the League Tables or the average Joe's that maintain the status quo.

Ironically my DD WAS one of those High Achievers. A full 2 academic years ahead in EVERY subject when she was at school. But the damage to her Mental Health, Well Being and Self Esteem were insurmountable.  And so I refused to leave her in an environment, worked like a slave to bring up the class average, with no praise or recognition ( "because it would make the other children feel bad about their achievements!" ) and no help AT ALL for her social and emotional needs ....... because she was "intelligent enough to know how to behave"!!!!

Oh I am so angry, so angry with this system that is failing our children and young people. And will continue to fail them as adults :-(

This 'problem' will not go away.

My children are wonderful, good mannered,hard-working, self motivated individuals.  They need an ENORMOUS amount of help EVERY SINGLE DAY because there are some things they just CAN'T do.........walk safely beside a road, remember to eat, drink, wash,go to the toilet, get appropriately dressed.  They are now 8 and 9 1/2 and in these areas, nothing has changed since they were toddlers - they will ALWAYS need this level of prompting.  What happens when I'm not there to give it?  I tested the theory once - my daughter got to day 3 of not drinking anything at all, I intervened before hospitalization was needed.

But apparently this is ok. Because apparently I will live forever.  Apparently I will ALWAYS be available.  Apparently I have consented to dedicate my whole, entire life - hopes, dreams, career plans - to their round-the-clock care, all by myself, forever.   And apparently, with zero help, guidance or support, I will ALWAYS know exactly what that care entails and what is needed in any given situation, ever.

So this is what I will do.

I will cry, in secret. I will rage in online chats with my fellow Army of Special Needs Mum's.  I will facilitate and enable and teach and keep house and resign all sense of self I ever had.

Because that's ok, right?  Because they're not sick. Because I can do it, regardless of the consequences and long term damage it may be doing to my health and mental well being.

Because that sounds fair, doesn't it?

Merry Christmas everyone!

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