I saw this tweet the other day:
It caught my eye, not because I am struggling to write anything at all( you read my last post right?) but I am struggling to write. When I started this whole adventure, do you remember how raw my writing was? It came straight from the heart and usually with little or no thought. I just sat down with the computer, switched my brain off and just let my soul say what it wanted to. It was amazingly cathartic for me and people really enjoyed reading it. I know they did, cos they told me they did.
When I tweeted Kate back to say thanks for the article she did something I wasn’t expecting. She read my mind:
@KateLPortman: @mrssavageangel hmmm. Why are you finding it hard? Are you struggling to find the words? Or are you fearful? Think they’re rubbish etc?
It stopped me in my tracks.
Because it’s a bit of all these things. I think I have the words. They run round my head constantly and sound great (even if I do say so myself 😉 ), then I sit down to write and *poof* they’re gone. Maybe I am afraid? Of not being good enough to compare. But why am I comparing myself suddenly? I never used to. Maybe it’s of myself, of my thoughts, of what’s been going on in my head. And maybe I’m afraid if I empty my head, I won’t know what to do with the aftermath.
I tried to write it down in January, but it didn’t sound right and anyway, I still wasn’t ready to share it, so it sat there, in my draft folder, gathering digital cobwebs. But now?
I don’t know how to put it, so I’m just going to say it. From the beginning.
If you read me regularly you’ll know, Oscar has a speech and communication delay and this was initially discussed with the Health Visitor back in April 2014. She visited a couple of times and just something about his ways made her suggest we visit a paediatrician, just to eliminate anything more serious than just a work a day speech delay (which I hear are tres common and nothing to worry about). An appointment was made in September and the concern in the doctor’s face and words was obvious. She asked if we had heard of Autism Spectrum Disorder, ordered further tests and leant towards us, explaining we were “probably in that ball park”. For a week after that appointment I couldn’t look at Oscar. Suddenly I couldn’t be with him, didn’t know what to say to him, what to feel. I was scared of my own toddler son.
Because you see she used the word probable and not possible.
I cried. Long and hard. It was so awful and no one could help, no one could say or do anything to help. I was directed to the National Autistic Society website, which was the worst thing I could possibly have done. All I could focus on were the awfully negative stats such as 70% adults with Autism Spectrum Disorders are unemployed and how people with ASD don’t feel things the way other people do. Brilliant. So my boy would never be financially solvent and he didn’t love me. Worst. Week. Ever.
To start with I chose not to tell anyone anything. But carrying something so weighty without talking about it nearly crushed me and after a while it became clear keeping this secret was breaking my heart more than the secret itself. So I told a friend. The relief was palpable and the more people who knew, the less scared I felt. Which makes sense if you consider the power of a secret lies in its keeping. But I still couldn’t share it with my blog. I wanted to, but not all the family knew and I hated the thought of them finding out in such a public way. So what I did write skirted the issue, alluded to his differences, and generally read like someone else’s life.
So over the months we saw various specialists and watched as he started and developed at preschool. We went from being sure, to not so sure, to sure, to totally confused. He ticked some boxes, but not others. I tried not to read too much around the subject and focussed on Oscar.
Then we had his multidisciplinary assessment last week. It was a big meeting, with seven of us in a hot room. No one said anything I didn’t already know or agree with, which was relief. And then it was agreed that while Oscar sits on the borderline for a lot of the markers for ASD (mainly due to his age), the overall feeling was that a diagnosis of Autism Spectrum Disorder would be appropriate.
My world didn’t crumble the way it did the first time round. I think I knew it was coming and actually having this validation will open up doors to support he clearly needs. He’s progressing so well at his preschool with the bit he’s had so far, just think what he could do with more?
And now I’m exhausted. I will write more, but for now that’s me. I’ve just eaten a pastry and bitten my thumb until it bled. I feel like sobbing, but I’ll save that for later as I’m in a coffee shop and it could get messy!
What it will mean I have no idea, so don’t ask. I’m trying to not think beyond the here and now. It’s getting me through the day at the moment. But it does mean he’s who his is. Same as you. Same as your child. He’s unique like we all are. He just has a different way of seeing and finding and making sense of the world.
So thanks Kate. You were right.
@KateLPortman: @mrssavageangel I sometimes find the posts I’m more fearful of writing are the VERY ones I need to write. x