Archive | February, 2011

Sorry to bother you…

25 Feb

Thanks for all the comments re the eye closing thing. Interesting to hear that S is not alone in this one. We’ve made an appointment and will report back on our visit to the optometrist.

I think I can fairly safely say that S has now officially settled into school. He’s very confident in class, answering questions, completing all his tasks and reporting back to me about everything that he does each day. He’s very proud to read me his reader each night (and insists he must also read it to dad and Aunty J as well). He knows the names of all the kids in his class (there are only 16 which is great!) and can tell me little things about each of them too. He sees them definitely as part of an extended family and has already told me he wants to invite ‘everyone’ to his birthday party (remembering his birthday isn’t until September, but I suppose there’s no harm getting organised early ;-)).

And speaking of birthdays, he got his first birthday invite today. It’s from another prep student, but not from his own class. The child’s mum had spoken to one of the aides working with S about whether he could manage at an indoor play centre OK. Manage? He would LIVE in one of those places if we let him :-). The mum was apparently very relieved as her son really wanted to invite S. It’s not for a month, but S is already very excited!

We’ve had visits from all S’s therapists now. We’ve got a whole new team, but S’s physio, OT and SP from last year are all on hand to help. I think I am going to call them the Z team – what are the odds of 2 of the 3 of them having names starting with a Z?!

The school is very grateful to have the support of the therapists and much is being done to set everything in place for him. With the only real outstanding dilemma being seating for the variety of different places that S will need a chair. But we are working on that.

He has been incredibly tired at night and yesterday I picked him up early because he was just too tired to move.  Hopefuly he’ll develop a little more endurance to last the distance, especially seeing he’s only got one more Wednesday free before it’s 5 days a week, although he will be leaving early on a Friday to go horse-riding – thankfully, AFTER art. I was almost in a lot of trouble when he thought he might miss that.

I am very happy to see his emerging confidence, although I can see we still need to work on that during recess and lunch-time when I think he’s not only tired, but also feeling a little overwhelmed by all those kids. It’s a shame the playground isn’t a little more accessible, but we will work on that. There’s still a few other little bits and bobs that we are figuring out as well.

I love that he is working on problem solving too.

Last night, as I was washing the dishes he came into the kitchen and said  this: ‘Sorry to bother you. But it’s too tricky for me to choose my reader when I have my leg wraps on’.

Sorry to bother you.

My little boy who at aged 3 had never asked a question and only spoke a handful of words. I love it.

So yes, we solved the problem. Leg wraps off for reading time.

No problem at all.

My big school boy. I am so proud of him.


Close your eyes

20 Feb

S has been asking me a question this week. I need some help answering it.

The question is this:

‘How do you close your eyes?’.

I realised a few years ago that S couldn’t voluntarily close his eyes – not to blink, wink, or close them – like for when we are playing hide and seek etc. He can close them for sleep, he can blink normally. It’s just the voluntary closing he can’t do. It just seems to be a quirky little aspect of his injured brain. A missing connection…

It hasn’t really been an issue. After all, he can close his eyes when he goes to sleep and blink regularly. His eyes aren’t sore and he can see just fine. If he wants to close his eyes to play a game, he just uses his hand to cover them.

But I think an activity at school early in the week where the children were blinking and winking has got him thinking. Hence, he’s raised the question for the first time.

He told me he had thought that maybe if he closed his mouth, then his eyes would close, but it wasn’t working. And he’s  asked me several times now how he could close his eyes.

So how do I answer a question like that?

My answer has been that he’s just got to practice. Not particularly helpful, I know. But it’s the best I can come up with so far.

A while back a behavioural optometrist came to S’s kinder to check all the kids and declared that S would benefit from some sessions with her. We didn’t take her up, mostly because we had too much on. But I’ve been thinking it could be worth a visit to help him with his eye tracking and concentration. Wondering now if she might also have some advice about this tricky issue.

Has anyone been to see a behavioural optometrist? Does anyone or their child have this issue? Any ideas about how I can help my son learn to close his eyes would be most appreciated. Thanks :-).

Head over heels…

15 Feb

School is going well.

There’s a lot to say, but haven’t had much time to sit down and say it.

Doesn’t help much when my other half uses up our Internet usage for the month in the first 10 days, downloading games for his PlayStation 3 (yes, I married a Man child) :-).

So for now, until I’ve got more time and a more reliable Internet connection (how did we ever get anything done on dial up!??!), just a quick story from school today. It sort of sums things up for me anyway.

All the children in S’s class were asked to tell everyone about ‘something they are successful at doing’.

I bet you can’t guess what S told them. I tried  several times and I didn’t get it right. Riding a horse? Doing Puzzles? Winning at Uno?

Nope. None of the above.

S told them: ‘doing somersaults’.

Yep, he’s a boy who’s not going to let a little brain injury get in the way of what he can do. Just hope he doesn’t run away and join the circus before he finishes his education :-).


Big school boy

5 Feb

S has literally been counting down the days for school to start. And on Wednesday and Thursday, he was counting down the hours.  Which means that it was unfortunate for us that for the staggered transition into school for the first day, we were in the afternoon group – so had to wait all those hours until 12.30 before we went to school.

At 6am he was dragging his lunchbox out of the cupboard and placing special orders for what he wanted to have for lunch. It wasn’t until about 11am that he admitted being a ‘bit nervous’.

Me too!

But I was surprised about all the other things I wasn’t feeling – dread, fear, panic, sadness – not at all.  Just a bit nervous and excited, just like S.

I think that says so much about how far he’s come and how well prepared I felt we were for his start to school. It also says so much about what a brilliant kinder he went to for two years with passionate, inclusive staff. It also says how incredibly lucky we have been over the past 4 years to attend CPEC – especially last year when his therapists worked so hard – and I mean ridiculously hard – to ensure that he would be ready for school and everything would be in place. They were such amazing advocates for his needs and such wonderful support to both of us providing all the know-how and information about equipment, funding, how he could approach classroom activities etc etc. The list could go on and we will be forever grateful.

It was definitely a set back waiting for the funding to be in place, but that was the only setback we’ve had, which is mighty impressive, especially when we know others who have had a much less smooth experience.

The school have been brilliant. Very supportive, very hands on and very open about what they do and don’t know, what they do and don’t want me to do.

I went in on Thursday morning and gave a little PowerPoint presentation to his teacher and aides. The other prep teachers came along, as did the Assistant Principal AND the principal. Now THAT is a sign of a supportive staff! I had planned it to be very much just the basics, and to go for about 15 minutes, but they had so many (great) questions, comments, suggestions that we were there for over an hour. And I left feeling incredibly positive about how the first day would go.

I also put together a letter for the families of all the prep children to introduce S. That should be going out to families on Monday. And I have almost finished an ‘All about me’  book that will live in his classroom and provide more detailed information about such things as how to use his PODD book, Dynavox etc. It will be available for anyone new who comes in and might need to work with S.

Most of the equipment that S will need was in place for the first day. On the ground, the ramp to the classroom is in place, the disabled parking space has been set up, the other (bigger) works around the school are in progress. We had nearly all the little equipment, except for his table (which is height adjustable and has a cut out insert for him to sit at) which we will be getting next week and his new PODD book, which I am expecting any day now.

And so, how was the first afternoon at school?

It went off without a hitch!

At the school’s request, I stuck around. I was happy to do so. It gave me a chance to show them a few things about his PODD book/Dynavox, best seating, transitioning etc etc. I will do the same thing on Monday because a different assistant will be with him that day (he will have two assistants, one working with him 2 days, the other for 3 days).

But mostly, I just sat back. And when I did that, S barely noticed I was there. He didn’t look to me for reassurance or defer to me when someone asked him a question. He joined in all the activities, answered questions, raised his hand, told the other students about his family (with a little help from me) and he loved every minute of it.

He was a little overwhelmed at break time – telling me he was ‘tired’ – when I think he was just overwhelmed by all those children. SO many children. Moving so fast. Some so big. Some so loud. He seemed to be in  sheer awe of what is a primary school in action.

But the other kids weren’t shy of him. Several asked what his walker was for and nodded happily and ran off when I gave an answer. And several others just wanted to know his name and if he was one of the new preppies.

It seems like such a lovely school.

I hope I don’t sound too gushy about it all. But I am so thrilled. So happy for S and feeling so confident that he’s going to have a great year – and hopefully beyond.

My big school boy. I can’t believe his first day of school has finally been and gone. And gone so well. I wish I had been given a magic mirror into this day when he was 3 days old and the doctors had taken me into the ‘little room’ to tell me of his injured little brain and of all the things he may or may not grow up to do. I would have seen a future that I could only have dreamed would be so bright after such grim beginnings. I have never, ever been more proud to be a mum.



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