I know that should say "turning" but I chose spinning as it is far more relevant to how things can often feel. We've had the official letter come through with the diagnosis for T and while it comes as a relief, you can imagine how my head took it. I must have read the letter four or five times before I said anything and still I haven't actually discussed any of it with anyone.
It's weird as I know it's what we wanted, in order to get the support networks in place, yet here I am feeling weirdly guilty. As I read through the letter (I wasn't able to be at the actual consultation due to Covid rules so that added a whole extra layer of self-imposed guilt) I remember reading it and thinking how familiar it all read. As I sat scouring the pages I realised it felt like I was reading about me. Then I told myself off for thinking about me and moved back to T.
The strangest victory was the now "authorised" genetics test that the specialists refused to do for him. No matter how much I argued the case (the links to Timothy Syndrome and associated ailments were apparently not enough to justify the test) yet the paediatrician immediately saw the value of knowing for T. Now I have to find the opportunity with all the covid sanctions to get him to the hospital to be tested. As silly as it sounds even he had a look of relief when they said they would test him because he confessed to feeling out of place with A being my genetics clone!
Cue more guilt! Whereas T is my brain clone I realise how he must feel seeing us do the Cardiff research stuff and be engaged with the TimothY Syndrome groups. Having received the diagnosis paperwork I bought him something and saw his face light up! You may recall from earlier posts the medical dog tags I had made for myself and A around the CACNA1C deletion....well T confessed he wanted his own but understood why he didn't have them. Putting that aside the very first thing I did when I was on my own was have the same tags made for him.
He had no idea they were coming and while he constantly forgets to put them on, I saw the sudden look of "I'm one of you" on his face. I'm a million miles away from a good parent and tend to find myself flitting between obsessions and attentions (when the deletion was new to us I had to learn everything, then I had to sort my books, then Everest Base Camp, then the testing.....everything becomes that all important and I realise I sometimes forsake other things). I try so hard not to do that and the only thing I will always allow myself to push aside is myself. That said, I realise (most of the time too late) that I am neglecting one thing or another and so the cycle of re-centring and re-adjusting begins anew.
All this continues to be an emotional roller-coaster, made even harder by the fact I am not an emotional person. The idea of trying to process the "feelings" of it all confuses me and I will confess to many times wanting to simply scream at the top of my voice in the car just to acknowledge the confusion and frustration and yet I don't. Little Brain reminds me it is a pointless venture, achieves nothing and wastes energy, what I am better at doing is training and working out (I may undo the hard work with poor nutrition but the training certainly acts as a form of self release and/or perhaps punishment!?!)
I know my own labelling (I don't like the idea of diagnosis or disorder) is in the future but I'm actually satisfied now that we have T his support networks building around him. That was always my end game with putting myself out on a limb and risking a lot of reputational and professional issues by being open and honest about the way my brain likes to function. I think in the last twelve months, what with everything that's happened, I've barely registered anything on a personal level and that suits me down to the ground (if I don't acknowledge then I don't need to deal with it). Yet here I am typing onto a random blog in case someone reads it and thinking about how silly I sound.
The scariest thing is the way people act and treat you. It's all well and good people saying the world is an accepting place and yet I know there's either disbelief because of ingrained stereotypes and expectations about autism as a condition or else a lack of understanding that makes people act differently. It's an odd feeling knowing people are thinking different of you and yet nothing has changed. Well, I lie, things have changed in the fact I try and allow myself to be a little more "me" and a little less masked and yet you see that look that says they prefer the masked version (so I am more than willing to oblige in that sense).
Which brings me back to T! That's not the world I want for him, not in the slightest. I am a child of the eighties, hell the whole concept of labels like this pretty much had nothing but negative connotations and yet now we're in the "new age" and live in a world with greater understanding. My hope is that the generation that surrounds my LIttle Man is in fact as accepting as it claims to be. I know the one I'm in struggles with that because of the times it comes from but I refuse to force T to become a masked version of himself to please others, he shouldn't have to repeat the same...mistakes(?) and take steps to learn from my example.
Covid has really put a spanner in the works for progressing the research side of things for the family and yet having emailed the team at Cardiff I see they are still as engaged as ever once things start to return to normal. I hate not knowing and understanding the intricacies but at the moment I'm obsessing about my writing and my full-time job so I'll leave that on the back burner until we are in a better position to actually do something about it.
Sorry to have just blurted out a load of random shizzle on that one, I'm going to leave you be.
