So

posts have been a bit average around here of late. My apologies for that, I’ve been stewing on something that I wasn’t sure I’d post on for fear you’d all collectively roll your eyes, sigh, gag and vow never to return.
So I basically bored you all away instead.
Anyway, here it is.
I mentioned we had Oscar’s IEP last week and after tying myself all in knots about it the session was fine. But I was having a chat with A at Oscar’s soccer on Saturday which triggered something in me. A and I first met when Oscar was about 2.5-3 and her little fella, L, who has Downs, was about six months old. A and her hubby are in the midst of deciding on schools for L next year as he leaves the program Oscar went through for Kinder and Year 1. They’re considering the school Oscar goes to. Anyway, I mentioned we’d had the IEP and that it was fine and A made the comment that the school seemed like one where those meetings would be positive and solutions based rather than a ‘these are our issues and concerns’ vent by the staff. I agreed but then had a moment of clarity:
“Although I don’t really think I gave them the time or avenue to go there”.
And I’ve been stewing on it ever since. His aide seemed very assertive in an almost ‘the reason there isn’t much progress isn’t my fault’, the special needs coordinator seemed fairly tense, the district special needs rep was very quiet and the school counsellor even moreso. There was discussion about high school, which, hello – is THREE and a HALF years away.
I know I’m reading an awful lot into this and all of this is just some fancy border around my real issue of the moment.
You see Oscar is in the boys dance group. This was something he really wanted to do last year – and which the school actively encouraged him to get involved in. Of course, this year it is the senior boys dance group and as we all know, once we hit Year 3 everything is taken to another level and becomes a lot more serious. He’s done dance all year but I’ve never heard anything about it from Oscar or school and quite honestly I had sort of forgotten about it for most of the year.
ANYWAY
The dance group has an eisteddfod on this Sunday. At Sydney Opera House. So it is all a pretty big deal… as those of us with any experience with eisteddfods know.
This was my first reaction on seeing the note about it “what an amazing experience for him I wonder if the whole thing will just freak him out”.
That’s right. There wasn’t even punctuation in.my.head.
I was kinda going with the ‘this will be an amazing experience’ because that has been our entire approach with Oscar – give him the experiences and opportunities of anyone else his age.
But I did think it odd I wasn’t getting any extra info about it from school so this week I put a note in his communication book we run with the school.
That got me a phone call.
One of those calls where it was obvious they don’t want him to go.
I know I know, you’re all rolling your eyes again. I can hear YOU.
But I’m pretty savvy when it comes to interpersonal communication and I JUST KNOW.
It was all – there will be a LOT of children. It will be very stressful. A lot of children get stage fright. I’ve noticed lately he seems to be just standing there watching the others rather than joining in.
And that was the clincher. Eisteddfods are pressure-cookers of over-achievers. Having the kid with the mongy chromosome standing on the side looking like a pimple on a pumpkin will not win any points. It could in fact lose points.
So here’s the situation. The ball has been placed in my court. It is ‘absolutely up to us’ about Oscar’s involvement.
I’m losing the precious little sleep I’m getting over this.
On the one hand I want to be all defiant and oh no, he’ll LOVE it and it WILL be good for him and what a wonderful experience for him.
But on the other hand I know he’ll be all vague and needy and probably teary due to the frenetic nature of all the back stage stuff. And then I KNOW on stage he won’t do it, he’ll do a move every now and then and otherwise stand there with this particular look about him which makes me almost wail out loud but definitely makes my heart bleed and the living grief of who Oscar could have been come shooting back to the top of my being with a red heat that is almost unbearable.
Anyway, one of my suggestions in the phone call was that we still came along to watch – and would that be OK. So I get this note in his comms book today saying that no, he couldn’t do that as all the tickets have already been sold and that tickets were at a premium etc. But then I noticed on the note that had come home with the details of when they were performing etc that tickets are sold at the door.
So really, any benefit of the doubt I was giving to the school is now well and truly dead.
And it’s just not leaving a good taste in my mouth.
Sigh.
But apart from that, whatever concerns I have about the school and their attitude/approach is only outstripped by how I’m feeling about my own interactions and parenting of Oscar.
Bec’s piece about her mum gave me a real fingernails on the chalkboard moment because I reckon if Oscar could talk it is what he’d say about me. That sure, he knew I loved him but he just didn’t think I liked him very much.
Ouch.
But there you have it. At the moment I am short with him, frustrated, saying “just because” or “because I said so” way too often to his incessant “whys”, spitting “nothing is up next” to his constant “wha u nex mama” and just being so terse with him. Like my dad was with me and my brother. And how I used to think “well that question/behaviour/comment didn’t warrant that tone/answer”.
There isn’t much progress in terms of his school work. There is NO progress with his speech. He can’t read and his writing is appalling (although markedly improved this term). I don’t practice his sounds with him at all, so all he’s getting is speech therapy and then me being ad hoc about repeating sounds.
And yet this little boy is fast turning into a teenager. And any weird feelings of grief I have about moving out of the cohort who breed to the cohort with kids who are the ‘must invites’ to weddings, birthdays etc because your friends of the parents rather than one of the friends is matched or indeed outstripped by the feelings I have about being the parent to a teenage kid with special needs. Because those kids become adults. And those adults generally outlive their parents and well, lets just all get down and wallow in the viscous cycle of depression parents of kids with special needs grow to know and hate.
The woman who was our family service coordinator dropped in on Monday which was more lovely that words can ever describe. This is a woman who also has four children and tells it how it is. I LOVE her and I cry a little every day that she is not part of our everyday life anymore. Anyway, I confided this to her, that I was just being such an awful parent to Oscar at the moment and she said all the right things which did actually lift my spirits somewhat.
The note about there being no tickets has knocked me backwards tonight as up until this point the school has been so supportive and positive but then I get it. Just as I am so emotionally stretched at the moment, the school can – and must – have its down times. If this is the worst of it – that they don’t want him to mess-up their performance – then really, what have I got to moan about?
This isn’t really going anywhere.
Just that this is how it is.

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  • Badger

    Dude, I swear to God, it’s UNCANNY how you are sometimes able to express so beautifully the exact emotions I’m having at the exact time I’m having them. I know my boy child and Oscar have vastly different issues but that whole parent of a teenager with special needs thing? I have been consumed by that for the past several months and it’s killing me, particularly my reaction/role in the whole thing. I haven’t written about it much because I don’t even know where to begin with it. But you just nailed it.

    I’ll have you know I did not roll my eyes once, because I KNOW THAT TONE that schools and even parents of “average” kids take (my son is the one who’s NEVER invited to birthday parties, remember) and I know damn well you are not imagining it or being oversensitive.

    I don’t know what else to say except to offer you a virtual hug across the miles and raise a glass of wine in your general direction.

  • blackbird

    I’m sending you all the support I can will out of my feeble brain…
    such decisions!
    Try not to be so hard on yourself.

  • meggie

    Him, there is nothing I can say. Have not been in your shoes. I just stand in admiration of you!

  • bec

    If your boy could talk I think he’d say you’re the best mum in the universe.

    Because you are.

  • Em

    I want to hug you and cry with you… our school journey is just beginning but it already scares me witless… I think you are a fantastic mother… we all snap, we all lose our tempers. you are doing the very best that you can and that is wonderful.

  • joanne

    When things like this happen to your child how do you be so strong???? You should be proud of yourself as a mum because it sounds like you do such an amazing job with your boys. I too dont really know what to say but my crossed fingers and thoughts are with you.

  • Stomper Girl

    AS long as he’s not being excluded from any in-house school concerts, I think you should ignore the stupid competitive eisteddfodd. All that costume and make-up and point-scoring. That is not what dancing should be about and I doubt it would be what Oscar expects from it either.

    Also. You’ve JUST HAD A BABY. Of course you are not totally on top of all your parental responsibilities. Cut yourself some slack, girl. There will be time to be your best when your batteries recharge, which would probably involve some sleep and not having bleeding or itises.

  • Susan

    It’s OK. Oscar has an extremely good Mother. I second the Stompergirl comment +++. We’re all behind you here.