Since my last post, there have been a lot of times that I have thought about saying something but then every time I thought about what I wanted to write, it just seemed too big and confused and I couldn’t work out where to start. But, as Christmas and the end of 2016 gets closer I feel that I should make the effort to write something down at least once more this year.
Last time I talked about reducing meds back down to where they had been earlier in the year. That definitely seemed to help a bit, but we haven’t got back to where we were in other areas. But then, when I look at where we were a year ago I realise that although our boy cuts himself, he no longer actually wants to be dead. It sounds a bit warped, but that feels like progress to me. His mood swings are awful and I sometimes feel like I’m all alone on a boat in a storm – can’t see what’s coming next and no idea when it’s going to hit, or how I will survive it. But I do survive it – always. Another drug has been added to his regime to see if it helps with his mood swings. There are days when I think it helps, other days I’m not so sure. We’re trying to keep at a half dose as one of the side effects that he experiences is intense hunger… which leads to unhealthy weight gain in most kids who take this drug.
Last time I wrote, our boy had just started to see a psychologist. The idea was to help him to feel better about himself, raise his self esteem. Unfortunately he just ended up feeling that we’d sent him because we wanted to change him and he was upset that we couldn’t just accept him as he was… We’ve stopped sending him for a while – maybe again a few months, we’ll see. One thing that was very clear to the psychologist though was that he really struggles to understand emotions and feelings – his own, and those of others. It makes life so super hard for him; he doesn’t even understand his own feelings of building anxiety and stress – he’s either all good, or terrible – he can’t feel the change or building feeling in himself so he’s unable to use any strategies to help keep things under control. Hopefully as he gets older and through puberty we find a way to help him with this. It’s sad to watch as he really wants to have friendships, but they invariably go wrong – either in reality or in his mind – due to some slight or subtle variation in social rules that he just doesn’t get. Every time a friendship goes wrong, his tears break my heart.
But he has achieved so much. A holiday away, a sleepover or two, lots of Leap, a weekend away, lots of photography with a student, regular visits to a dog trainer with his puppy, some high jump, he gets up and gets dressed every day (he didn’t last year!), he seeks contact with others (even though it so often goes wrong!). He has such a beautiful heart. I had a lovely email about him the other day:
“He is such an awesome young man. My daughter was so impressed with him with their short meeting and I am very fond of him. I guess he just has to believe that about himself. Big hugs to both of you. Please tell him how much I admire him for how he has stuck with xxxx. He is a bright young man with so much to offer the world.”
Yes, I am proud and also thankful that the person who wrote this can see what a beautiful person he is under the confusion and hurt – the challenge now is to help our boy see this too! I read him the email; of course he didn’t believe it but those words would have gone in somewhere!
On top of that I have been a little unwell too. I am waiting on some tests but autoimmune thyroid disease seems to be part of my ongoing autoimmune health concerns, alongside some other stuff. Of course our boy doesn’t know about that. He is terrified of the idea that I will die one day (which of course I will!), but any sign of weakness in me upsets him hugely and he imagines all sorts of terrible scenarios – we’ll keep my health situation quiet for now. No need to panic him.
So where to next year? More of the same I guess. There are many years of puberty to get through yet and I suspect things will get worse before they get better. Perhaps a retry of school? Maybe, maybe not. Small steps, deep breaths, one foot in front of the other, and just deal with the moment…