My post A-Day wobble

Damn you, you so called ‘autism experts’.  Damn you for making me wobble and look at my precious daughter through those eyes again.

Those eyes I looked through years ago when our little girl was being analysed and tested for so many scary things.  The eyes that delayed me connecting with my own flesh and blood, from creating that special mother and daughter bond.

The eyes that made me question every movement, look, sound or twitch she made, wondering if it was ‘normal’.  The eyes that searched google morning, noon and night in the hope that I would be the one to find the answer so that I no longer had to subject her to daunting hospital appointments and horrible tests.

With the help of my wonderful Crossreach counsellor, the eyes I worked so hard to switch off and replace with the loving, true eyes I now see her through.  Until A-Day.

You almost did it.  You almost switched them on again – they have been flickering on and off since that day, but I have made sense of it all.

She is still the same beautiful girl she was before.  She doesn’t just see me as a tool to get what she wants, she sees me as her mum – and I know she feels as much love for me as I do her.  She understands our relationship, in fact, she understands her relationship with all the key people in her life.  The way she ran to her Aunty Sally and gave her a massive cuddle when she walked through the door today.  The way she lights up when her brother is in the room.  She connects with people in the same amazing way today as she did before A-Day.

I almost let it happen, but this diagnosis isn’t going to change anything.  It’s given us a little more ammunition and a massive amount of fighting spirit to get what is best for her, but she’s still our beautiful, happy and wonderful Tilly.

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A-Day

My name is Michelle, and my daughter is autistic.

Now that’s a phrase that I hoped that I would never have to say.  But after a 3 hour appointment this afternoon, where my daughter was observed and analysed by 2 people who had never met her before, that is exactly what I’ve been told is the case.

“We can tell you that after observing her this afternoon, she does indeed meet all the criteria for us to give her an ‘Autism Spectrum Diagnosis’.  Now, get on your way.”

Or at least, that’s my interpretation of how our meeting went.

In one fell swoop, they took away all hope and positivity I had about my daughter’s future.  The delight I’ve been taking in her relatively recent ability to communicate her needs to me and others by taking us to what she wants has been diminished to an autistic trait.  “She is merely using you as a tool to get what she wants – you are not a person to her, she is taking you to what she wants but not using any of the skills we’d expect to see from typical children such as pointing or making eye contact to communicate her needs.”  So you’re telling me that the mini-celebrations I’ve been having about Tilly making it clearer about what she wants is actually a trait of autism, and that I shouldn’t be rejoicing that her development is progressing?

“And now what?  What are the next steps?”.  I ask.

“Well, nothing.  You are already getting the services she will need so there is nothing more we can do.”

And there it is.  My fear of what might happen if today’s outcome was that Tilly did indeed have autism.  The grand total of nothing.  The pathetic 6 week block of speech therapy (if we’re lucky) we get already will remain that.  The ridiculous input and support from Occupational Therapy will remain just that.  The educational support she gets will remain the same.  She may be able to access the ‘specialist communication provision’ that is on our doorstep – but there is no guarantee as spaces are limited.

We’ve got yet another label, another issue to deal with but with absolutely no support whatsoever.  Why?  Why is this acceptable?

In the words of the paediatrician who saw her today, her communication issues are preventing her from learning – but as there is nothing in place to address this, how will learning ever improve?  We’ve been given a mind-blowing diagnosis and set on our way.  Our 8-year old daughter has had issue after issue to deal with since she was born, and still, we are having to fight our way through whatever bloody system is in place to get support that will help her.

It’s only been a few hours since her diagnosis but after a good chat over a bottle of wine with our wonderful friend who works with Tilly, we are already preparing ourselves for battle.  If nobody is going to fight her cause for us, then we will have to prepare our armoury and go in all guns blazing to get the support and education she should be entitled to, and very much deserves.

So I will continue to celebrate all the things Tilly achieves and the progress she makes, not because of her new label but in-spite of it.  When she looks me in the eye and smiles or gives me a cuddle because she wants to hold her mummy I will continue to be proud because regardless of all the obstacles she faces; she continues to fight and move forward, unaware of her labels.  And because she is so utterly incredible we will fight tooth and nail all we can for her, to get all the help and support she needs and deserves.

Here we go again….