Things haven't been that great recently. I know this is a music blog, so if you're not interested in this skip to the end for the music. I certainly didn't start this blog as a place to bare my soul but real life bleeds in from time to time.
Simon at The Songs People Sing wrote an affecting piece the other day about aging, which struck several chords and was a great piece of writing. It finished with the joy of watching his youngster respond to music, which our eldest I.T. really doesn't do, which equally affected me. Not your fault Simon, my problem. Our son I.T. had his cochlear implant operation two weeks ago. He's been off school since recuperating. Being the parent of a disabled and special needs child is exhausting in a variety of ways. You think you've got used to knowing that other peoples' twelve year olds that you've known for years do different things and have a different, more 'normal' existence, but occasionally it slaps you in the face when you're not expecting it. I won't bore you with the fairly mundane example that got me recently. I.T. is relentless, and in a way that other people love. He talks nonstop, constantly asking questions (often the same questions over and over, stuff he knows the answers to). Many adults love this. Their own kids don't want to sit around with their parents so a funny little boy who sits on their knee asking where they shop, what day their binmen come, what motorways they use, is nice. However it drives us potty much of the time, especially when we're tired. Recently we've been very tired. I.T.'s op took it out of us, more than we realised and he's been off school so has spent every waking moment following Mrs Swiss around, talking constantly. There is no headspace. He's also, since the op, started getting up at 5 am, usually in a bad mood, slamming doors, demanding we get out of bed, and not being nice to his sister. With I.T. you have to remain positive constantly, otherwise you start to spiral, which inevitably makes it harder as you don't give him the attention he needs. So his behaviour worsens. So you spiral. Etc. He needs to go back to school, to loosen his dependance on Mrs Swiss and change his habits and break the pattern. But this week is half term. But not for me, I'm at work, so the whole thing spirals again. Today we've made a concerted effort to shake off our despondancy and things have been better. Mrs Swiss is out tonight on a well earned night out, which is why I'm typing this at 22.31pm. It may well get deleted later.
When I.T. was first diagnosed eleven years ago someone gave us an A4 sheet with an extract on it. They meant well, as people usually do. It said having a disabled child is like going to Holland when you thought you were going to Italy. Holland is a very nice country with many beautiful and interesting aspects, but it isn't Italy so getting used to the idea you're not where you thought you were going to be takes some time, but eventually you can love being in Holland as much as Italy. I thought it was trite nonsense then and I still do now.
Sorry about all that. Normal service resumed tomorrow.
This is The Walkmen, recommended to me by one of my brothers recently, from their Lisbon album. I didn't know too much by them before but I like this a lot.
blue-as-your-blood.mp3#1#1
Simon at The Songs People Sing wrote an affecting piece the other day about aging, which struck several chords and was a great piece of writing. It finished with the joy of watching his youngster respond to music, which our eldest I.T. really doesn't do, which equally affected me. Not your fault Simon, my problem. Our son I.T. had his cochlear implant operation two weeks ago. He's been off school since recuperating. Being the parent of a disabled and special needs child is exhausting in a variety of ways. You think you've got used to knowing that other peoples' twelve year olds that you've known for years do different things and have a different, more 'normal' existence, but occasionally it slaps you in the face when you're not expecting it. I won't bore you with the fairly mundane example that got me recently. I.T. is relentless, and in a way that other people love. He talks nonstop, constantly asking questions (often the same questions over and over, stuff he knows the answers to). Many adults love this. Their own kids don't want to sit around with their parents so a funny little boy who sits on their knee asking where they shop, what day their binmen come, what motorways they use, is nice. However it drives us potty much of the time, especially when we're tired. Recently we've been very tired. I.T.'s op took it out of us, more than we realised and he's been off school so has spent every waking moment following Mrs Swiss around, talking constantly. There is no headspace. He's also, since the op, started getting up at 5 am, usually in a bad mood, slamming doors, demanding we get out of bed, and not being nice to his sister. With I.T. you have to remain positive constantly, otherwise you start to spiral, which inevitably makes it harder as you don't give him the attention he needs. So his behaviour worsens. So you spiral. Etc. He needs to go back to school, to loosen his dependance on Mrs Swiss and change his habits and break the pattern. But this week is half term. But not for me, I'm at work, so the whole thing spirals again. Today we've made a concerted effort to shake off our despondancy and things have been better. Mrs Swiss is out tonight on a well earned night out, which is why I'm typing this at 22.31pm. It may well get deleted later.
When I.T. was first diagnosed eleven years ago someone gave us an A4 sheet with an extract on it. They meant well, as people usually do. It said having a disabled child is like going to Holland when you thought you were going to Italy. Holland is a very nice country with many beautiful and interesting aspects, but it isn't Italy so getting used to the idea you're not where you thought you were going to be takes some time, but eventually you can love being in Holland as much as Italy. I thought it was trite nonsense then and I still do now.
Sorry about all that. Normal service resumed tomorrow.
This is The Walkmen, recommended to me by one of my brothers recently, from their Lisbon album. I didn't know too much by them before but I like this a lot.
blue-as-your-blood.mp3#1#1
I could never reconcile being cross with a seriously ill child. You know how precious time is, given their fragility. But it doesn't stop them being annoying on occasions. Always felt the guilt. Same today.
ReplyDeleteItaly/Holland. Meh.
I'll be honest with you I'll don't have a clue about how you two guys are actually feeling, but through both your writings over time I've got some idea.
ReplyDeleteI've a couple of (separate)friends with kids on the autistic spectrum, one mildly so, one not so.
The thing that I've always, if I'm honest, been mostly suprised about is how they don't parent any differently to anybody else I know. Right down to feeling irritated by their offspring. I'll also admit that I never understood that feeling until I had my own.
I was intending to delete this piece this morning but hadn't got round to it, and now two people have contributed so I guess I'll leave it. Don't want it to seem like a self pitying whinge
ReplyDeleteI always worried about the 'whinge' factor but it isn't. It's simply an honest piece. Doesn't do woe is me.
ReplyDeleteGlad it was published, glad I read it.
ReplyDelete