So, today I have a whole new bunch of confusing thoughts in my head which basically add up to a general pessimism about diagnosis. This is a theme from different parts of my life so the post is going to be a bit rambling I guess.
Firstly, today we got an appointment for son for a CDC clinic. Which I’ve had to cancel as we’ll be away. Whilst I was on the phone I tried to find out what on earth a CDC clinic is and what it’s for (the internet tells me that it’s a Child Development Clinic, which is more than I was told, but doesn’t mean much to me, maybe I’m over analysing). I knew it was related to the referral for ASC (Autistic Spectrum Condition) assessment but what it’s purpose was, who it was with or what would happen were beyond me. I have found out it the list holder is a pediatrician (which I was told directly) and that she is female (which I inferred by use of pronouns). Hmm, not much more information then.
Apparently we will get a new appointment in the post. And then I have to figure out what to tell my son about why he has to see someone medical when he know’s he’s not ill (quite rightly), as at the moment he doesn’t know that his school and his dad (and on some days me) thinks he may have ASC and that he’s been referred for assessment. So finding something appropriate to tell him, that doesn’t distress or confuse him or give him unrealistic expectations will be hard. Especally as I don’t know what will happen at the clinic. Unsurprisingly thinking about hard conversations to come gave me doubts, why am I doing this? Why am I putting us through this? For what?
We are in the middle of the long summer holidays. And home life is more adaptable than life in term time. In general, there have been less issues. Yes, we he did have a little meltdown on the kids program he was on for a week and there have been more of the endemic sleep problems but generally out of school time is happier family time, less pressure, more adaptable, more flexible than term time. I don’t have teachers reporting to me about his inability to focus on the task at hand. We have our own codes for getting him to do things (e.g. I mention I’m about to ask him to clean his teeth, he says “not right now, I’m off to play with lego”, then goes and “tricks” me by cleaning his teeth instead and then I pretend to be annoyed that I didn’t get to boss him about).
Before I was sent this appointment I was very aware that I think he may be treading the borders of ASC, I’m not confident if he has it “properly” or just some traits, I’m unsure if he will fulfill the diagnosis criteria and if he does if the world in general will believe his diagnosis.
Also I’m wondering if it’s him or the school system that has the “problem”. Maybe my GP was right to refuse to send him for diagnosis initially and instead refer me back to the school, suggesting that if they think he may have Aspergers maybe they should just get on and treat him as if it did have Aspergers and see if that helps. But the school think they will have access to more resources/help if they have a piece of paper with a diagnosis on. At the very least I think it will give them permission to be more flexible in their approach to him in this rigid world of our Education system. And what about him in the future. Will he grow out of it (as my friends son seems to have done for the time being at least) or will the differences become more noticeable. Would a diagnosis make him more self conscious, or help him understand? And how will he feel if he goes through the process and comes out without a diagnosis?
So, that is uncertain wanderings of one part of my mind. I’ve also been wondering about me. Last year when things got so bad that I went to see my GP, I was unsure what outcome I expected. On the one hand I was feeling like things were building to a crisis, that I wasn’t going to be able to contain my anxiety much longer, that I was going mad, that something was going to snap and unravel inside me that would have dramatic consequences on my life. On the other hand, I didn’t know what I wanted the GP to do. In my head, I think maybe the only options available were Prescribe Drugs, Admit me to Hospital, or Tell Me to Pull Myself Together and none of them felt right.
When I saw my GP, one thing he said was that he didn’t think I had depression. I wasn’t even sure why he said it, as it was so clear to me that I didn’t have depression (as I don’t feel depressed and besides, Bitchface would tell you that’s a proper mental illness, and I’m just making myself stressed by being unorganised). What he did do which was sort of unexpected was burst my bubble, he listened to me and agreed it sounded bad but told me it was ok. Which kind of worked in the short term.
Anyway, more recently I saw a counselor (we managed a grand total of 2 1/2 times before the summer holidays started). I haven’t got round to writing about that yet. But one thing she said to me, in our initial test 1/2 appointment where I tried to explain what was wrong and cried a lot, was that she thought I might be depressed. This surprised me. And then she gave me a list of reasons as to why. I can’t remember exactly, I think it included not wanting to get up, oh, I really can’t remember the rest of the list right now, but she did come up with a list of things that she’d gleaned from our conversation, which I had to admit did sound a bit like a description of someone with depression. Which was odd. She suggested I go back and see my GP. I haven’t. Partly as this was not long after I’d written to him and requested he referred the boy for assessment even though he’d initially refused and I was worried about confrontation, about him being annoyed with me, about me coming across as a stroppy patient. And partly as I felt I’d been to the GP too many times in the past year. We talked about that. I hadn’t been for me since I saw him about my anxiety and he had said to come back if I needed to (which I nearly did). I’d been as a parent, for my children, at least once at the surgeries request (for asthma check ups with the nurse).
So, I said yesterday that I was worried about my anger. And this is why. In my limited understanding it can be a symptom of depression, so it links in. And I can’t tease out the strand that is my anger and follow it back to what it’s causes are: lack of effort on my part to stay calm? (Bitchface would say yes to that one), stress?, tiredness?, PMT?, depression?, not enough me time? ….
So is there any point in going back to the GP? I’m not sure what for. What would he do differently? Medication still doesn’t feel appropriate. My neighbour waited months for a referrel for a CBT group – I could just have private counselling for that once term starts again. Maybe he knows how little he has to offer.
I know what triggered this part of my wanderings. This post. Bitchface feels compelled to get me to point out that my worries are no where near as serious as those in the Purple Persuasions blog, but the feeling of “What’s the point in asking for help if there’s nothing appropriate to offer” kind of summarises how I’m feeling right now. About me, about the boy, in general.
So, here I am. Wallowing in apathy and dissolution with The System. Maybe it’s just nerves about what will happen next. Maybe I need to trust in the system and give it time (or in the case of me, actually get around to asking the system for help). Maybe it’ll all work out ok. Maybe I can’t be bothered.