The Orion Chronicles

Posted by: Anji | September 29, 2009

Orion’s Formal Developmental Check Up

Orion’s dad and I took him to his Formal Developmental Check-up this morning. It took about two hours of ‘tests’ where they got him to do different things with toys and talked to us about the things he’s able to do. He was ever so good and tried really hard to do all the things they asked him to, even when he was finding them difficult.

He is 48.7 months old. With his speech & language and cognitive skills, he is ‘aged’ 53 months. With his fine motor skills, gross motor skills and personal/social skills (dressing, personal hygiene etc) he is ‘aged’ 36 months – so a whole year developmentally delayed in those areas.

The last FDC he had was when he was two years and three months old, and he was only delayed in those three areas by five months then. Apparently for the delay to increase is common, as they’re expected to be able to do much more as they get older.

So it’s pretty much as I suspected – he’s substantially delayed physically and a bit advanced cognitively. I also mentioned his little drooling problem – he dribbles sometimes, not enough to wet his t-shirt or anything but enough to notice it on his chin. She said that’s pretty normal with hemiparesis and to put a tissue or hankie in his pocket and get him into the habit of wiping his mouth. There are medications available for it, but like I said at the moment it’s not a huge problem and a hankie will sort it.

I also talked to the doctor conducting the assessment about getting Orion statemented – a Statement of Special Needs which would be given to the school and would ensure he got the help he needs, and probably even a helper assigned to him. She agreed that he would need to be statemented and said she’d referred him for an educational assessment over a year ago. She’s going to chase it up today, so we can get it done with plenty of time before he starts school.

So that was the check-up, he enjoyed it, it went very well and now we know exactly where he is and what he needs help with. He has an appointment with his Occupational Therapist next Wednesday, and is seeing the Physiotherapist for a check of his ‘magic glove’ next week as well, as we think the thumb part might be a little too tight. Aside from that, I think that’s it!

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Posted in Child Development Centre, Consultant Paediatrician, Development, Glove, Health, Hemiparesis

Posted by: Anji | September 24, 2009

School, new bedroom and random babble.

Four or five days ago I stopped drinking tea after 6pm. I had a feeling that the reason I wasn’t getting to sleep at night might be something to do with my caffeine intake. Sure enough, I’m getting to sleep much, much quicker now. I’ve switched to Galaxy hot chocolate in the evenings instead, which is hot and tasty and helps me feel sleepy. The flip side of this is that now I’m letting my body tell me when it’s tired, I’m feeling sleepy by eight or nine o’clock. I can’t go to bed at that time because if I have more than eight or nine hours sleep I feel just as rubbish as when I’ve had less than eight or nine hours.

On Wednesday Orion’s dad came round and we went to visit the first of the three schools we are considering sending Orion to. It was really nice – small, modern (‘interactive white boards’? Never had those when I was at school!), airy and generally a good atmosphere. It sounds like Orion’s ’special needs’ would be catered to very well there. The only problem I have is that they do ‘collective worship’ (despite ostensibly being a community, i.e. non-religious, school) which the prospectus says along with its Religious Education is ‘mostly Christian’. This bothers me. We saw the second school today and again it seemed very nice – I’m not sure I liked it as much as the first one (though it had all the same mod-cons etc), but it had the bonus of its assemblies being ‘non-denominational’ and having a much larger building. We’re seeing the third school on the first of October.

I’ve spent much of the week cleaning/maintaining the house. I think Fredrik going to work has really given me some motivation. The house is now clean and tidy from top to bottom and I’ve been maintaining that pretty easily. It probably helps that my dad came over at the weekend to help us switch the bedrooms around, which meant a lot of shit got sorted out and/or thrown away, and I got to give the rooms a good clean including where all the furniture had been. Orion is thoroughly enamoured with his new bedroom – though it’s smaller, his stuff ‘fits’ better without all the open spaces of his old room, and he looks a lot less lost in there.

My dad came yesterday to measure where Fred’s remaining boxes are (he still has a lot of stuff packed in boxes as there’s been nowhere to put it). Dad’s going to buy/build a set of cabinets to go in the space at the end of the upstairs corridor, and another one for where Fred’s boxes are in the bedroom. This has a double bonus – there won’t be piles of untidy boxes around (as either the full boxes or the stuff from the boxes can be put in the cabinets) but also my dad is going to make the one for the bedroom at exactly the right height so I can have a permanent altar up again.

And finally, I phoned St Vincent College today. I’ve been planning for a year or two to go back to college in September 2010 (the year Orion will start school) and have settled on a preliminary line-up of Physics, Mathematics, Philosophy and English Language & Literature. I had a bit of a heart attack when I phoned though; full-time adult education there used to be free as far as I knew, but the woman on the phone told me it was now £440 per course per year.

I phoned again half an hour later to find out if there were subsidies for people on benefits – apparently not for Incapacity Benefit, only the means tested ones. However the bloke on the phone told me that if I was going to be between 18 and 25 when the course started (which I will) and I don’t have A levels already (I don’t, only AS levels) then I would be exempt from fees as it would count as something called “first full level three”. I’m going to phone again tomorrow to check that my AS levels won’t be a problem there, as some websites are giving me conflicting information about whether my AS levels will preclude me from claiming fee-free tuition under these rules.

It’s only quarter past nine but I’m shattered and the laundry and washing up are already done so I’m going to get myself into bed. Tomorrow Jenny is coming over, and Ginge is going to come in the afternoon to pick Orion up with me and possibly go to the park. I’m hoping I’ll have the spoons to deal with all that, so sleep is what I need right now to give myself a fighting chance!

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Posted in Education, Fredrik, Friends, Home, Housework

Posted by: Anji | September 21, 2009

Photo dump – Orion at the park today. :D

I took Orion to the park on the way back from preschool today, and we played and then on the way home we made a big pile of crunchy leaves to jump in. We got some very strange looks (well he didn’t, but I did). Anyway, here are some photographs of Orion having fun today. None of him jumping in leaves I’m afraid, I’d put the camera away by then.

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Posted in Photographs, Playtime

Posted by: Anji | September 14, 2009

Fourth Carnival of Feminist Parenting

Just a heads-up that the fourth Carnival of Feminist Parenting is now UP at Mothers For Women’s Lib. There are some truly brilliant posts featured this month, so go and check it out.

Also, don’t forget to submit a post – or many posts! – for next month’s Carnival. You can submit your own post or one by someone else, so keep the Carnival in mind while you travel the blogosphere over the coming month. The fifth Carnival will be posted on Sunday 11th October 2009 and the submission deadline is Sunday 4th October. Submissions can be made at the carnival submission page.

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Posted in Feminism

Posted by: Anji | September 10, 2009

Orion Dancing

As requested by Ruth, a video of Orion dancing to Reel 2 Real’s “I Like To Move It”.

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Posted in Uncategorized

Posted by: Anji | September 8, 2009

We like to… MOVE IT!

Orion went to preschool today. His dad picked him up and they hung out for a couple of hours, and then he came home. When he got home he kept singing “I like your move it move it, I like your… MOVE IT!” He was singing it over and over again (with me gently pointing out that it should be “I like to move it move it”) when suddenly we heard THIS from the other room.

Fred had about twelve different versions of this song, but of course this one is the original and the best. It came out in 1994 when I was just eight years old, so this is serious school disco music for me. Of course these days I can’t hear it without thinking of Madagascar, but that’s not such a bad thing.

Orion had loads of fun dancing in the dining room to this with me and Ginge which was great fun, although Ginge did get a couple of randomly flailed fists to the testicles (I hasten to add they were Orion’s fists, not mine!). I love watching Orion dance and sing, he has no inhibitions yet so he just throws himself about to his little heart’s content with no worries about what people are thinking of him.

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Posted in Anecdotes, Friends, Music

Posted by: Anji | September 6, 2009

Four

My dear Orion, you turned four years old today. You’re very proud of that, and have been telling anyone who’ll listen “Today’s my birthday and I’m FOUR!” with great enthusiasm.

I was worried you were going to be grumpy today, because last night when you went to bed you were adamant that you didn’t want to have a birthday. “Phone everyone up and tell them to not come!” you said. “I don’t want cake. I don’t want presents. I don’t want a birthday,” you said. This morning of course, you woke up happy and bright as usual, and the excitement about your birthday that you’ve been expressing for the last few weeks all came back in a big rush of happiness. You spent yesterday with Daddy visiting his side of your family, getting presents and birthday wishes, so I think perhaps you were just very tired from that.

This morning we hung out for a while, then Uncle Ginge and your Nanny and Grandad came round, and you opened all of your presents. My goodness, it was a huge pile – you actually got bored of opening presents about half way through, so I think we all might have overdone it a little! The funny thing is, I think you’d forgotten that you would even get presents for your birthday – all you’ve been excited about for the past few weeks was that you were having your party at Krazy Kaves (a local soft play centre). When you accidentally saw your presents wrapped up on my dressing table last night, you thought they were all for Nathan, as it had been his birthday recently.

You thanked everyone very nicely, and then Corrine and Adam came round with yet another present. You loved all your presents of course (I suspect even if someone just gave you a handkerchief you’d be elated, you just love that people are giving you things and are grateful for everything!). We played Hungry Hippos (a ‘board game’ Ginge gave you) until it was time for your party. Your friends from preschool Toby, Nancy, Charlotte and Callum came along, as well as Nathan of course.

All your favourite grown-ups came too – me and Fred, your Daddy, Nanny, Granddad, Ginge and Jenny. You went charging around Krazy Kaves with all that energy you seem to always have, and when the time came to go upstairs for the food you were the most graceful I’ve ever seen you at a dinner table. You had a Thomas cake which you loved and shared with all your friends – and all of us grown-ups had some too, of course!

I try to write something for you every year about what you’re like, so here goes. Your favourite things at the moment are cars (and buses, fire engines, ambulances, trains and anything else with wheels) Krazy Kaves, playing football, singing, going to the park, baking, colouring and puzzles. You really hate tidying up, the ‘baddies’ from Numberjacks, being told no and having to stop playing at bedtime.

You’re hilarious, and can make me laugh even when I’m not feeling so great. You constantly surprise me with new words you’ve picked up – today you told me your ‘magic glove’ was “Just fab, Mummy!” You have some phrases you’ve started saying fairly regularly recently – “That’s amazin‘!” and “I’ve never been there before!” – even when you’ve been to wherever it is a hundred times before. Another one I love is “I can’t believe it!” which you say about the most commonplace and believable things. “Chips for dinner? I can’t believe it!”

I’m amazed by how much you remember. Your favourite book at the moment is ‘Aliens Love Underpants’ (though that could soon be usurped by ‘Dinosaurs Love Underpants’, which was a birthday present today) and you know the entire story from start to finish. You love it when I start a sentence from a book and leave off the last word for you to fill in, and you always get it right. With your favourite books you can read along with me and I love hearing your little voice following along with the story. Another benefit of you remembering so much is that you remember song lyrics, and you love to sing with me – and I love to sing with you!

You’re such an amazing, beautiful and somewhat intriguing person. You started your new preschool this year, and your teacher actually asked me if you ever ‘misbehaved’ at home, because you’re so well behaved and friendly and helpful at preschool. I had to admit that it was a very, very rare thing for you to be ‘naughty’. You’re polite and you want everyone to be your friend, you’re loving and you always have a cuddle and a kiss for your old Mum.

You inspire me and teach me more than I ever could have imagined possible. Happy birthday Orion, and may the next year be even better than the last.

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Posted in Birthday, Family, Fredrik, Friends, Letters, Memories

Posted by: Anji | September 4, 2009

The tidying battle is won… but I’m not sure about the war!

Orion and I had the tidying argument again this afternoon. His toys were all over the dining room floor, and he came and asked me for some pink milk (strawberry Nesquik – Charlie & Lola fans will get the reference). I told him he could have some pink milk if he tidied his toys away.

Orion: But I need you to help me.
Me: You don’t need help, you’re a big boy and it’s only a few toys.
Orion: [throws himself on the floor] But I HATE tidyin’ up!
Me: Nobody likes it darling, but it has to be done.
Orion: [throws a toy at the toy box, misses]
Me: Put them in the box properly, please.
Orion: [starts screaming unintelligibly]
Me: Orion, if you put half the effort into tidying that you are into this tantrum, it’ll be done in five minutes.
Fred: Orion, I’m going to have to turn Fireman Sam off now, because you’re being silly.
Orion: [screams even more] But I HATE tidyin’. I don’t WANT to tidy. [carries on screaming and crying]
Me: I need to go out for a cigarette Orion, can you try to tidy up while I’m gone?
Orion: But I HATE…
Me: Just a little bit at a time.
Orion: [puts one car in the box] There.
Me: A little bit more…
Orion [puts another car in the box] There.
Me: And a little bit more…
Orion [puts another car in the box]
Me: I’ll be back in a moment, darling.

While we’re out in the garden, I hear Orion call out to me – “MUMMY?! MUMMY, I’M TIDYIN’!” Fred and I looked at each other disbelievingly. And then again. “MUMMY?! MUMMY, I’VE TIDIED!” I came back inside and he proudly, breathlessly gestured at the dining room floor. It was completely clear, all the toys put in the box and the box put on the chair.

I have no idea which part of what I did was the ‘right thing to do’ but obviously something worked. Or perhaps he just got the logic through his head that it was easier to tidy and get what he wanted at the end, than to scream and cry and not get what he wanted.

Final point of irony – he just took his coat off (for some reason when he got home from preschool he wanted to keep it on) and he has a big white sticker with a smiley face and the words “Well Done” on it. I asked him what he got the sticker for.

His reply? “For tidyin’ up at preschool.”

Kids!

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Posted in Anecdotes, Behaviour, Housework

Posted by: Anji | September 3, 2009

Can a four-year-old truly hate? :oP

I took Orion swimming at the Pyramids yesterday morning, before we went for his glove appointment. This is a big deal for me, as previously I’ve been unable to get into a swimming pool, especially a children’s swimming pool, without losing my shit. Orion was a star too – he’s generally a little afraid of ‘deep’ water (i.e. deeper than bath water) – having one arm which you can’t control very well and therefore can’t catch/push yourself back up with will do that to a person. However, he eventually managed to use the baby slides without me having to catch him at the bottom, and even deigned to let me hold him belly-down in the water to practise leg kicking a few times.

When we got back, Ginge came round with his friend Lucy, who had brought her house ferret Toby with her. Toby was pretty much the friendliest, most docile ferret in the world, though of course he had that strong musky-honey scent that ferrets all seem to have. He was running free all over my house, and then Lucy put his leash on him and Orion ‘took him for a walk’ (more like a drag, at times!) around the house. Orion’s got this thing about animals where he loves them from afar but is reluctant to go too near to them, and has to be cajoled into stroking them, but he did give Toby a few scritches.

Today we had a full house. First Ginge turned up, then my mum and my sister, and then Jenny and her son Nathan. We all had a good time, though I felt a little guilty that I didn’t get to talk to my mum and sister that much – my sister was using my computer for most of it, and my mum was watching stand-up comedy with us so it’s not like I just abandoned them or anything. ;o)

Orion had his glove on for two hours today. He’s supposed to be wearing it a little more each day – an hour on the first day, two hours on the second day, four hours on the third day up to eight hours on the fourth day. The leaflet recommends going up to a ‘full day’ (from waking until bedtime) but the physio only wants Orion to be in it for eight hours a day, I suppose to let his skin breathe a little bit.

It’s a bit of a bugger to get the thing on as well – it’s not especially stretchy and of course it’s built to be tight on him (so that it puts pressure on the muscles) so I was warned it could take up to fifteen minutes to get it on him properly while we were getting used to it. Once again though, he was an utter star and sat patiently while I wrangled the thing onto him.

This evening was a first, and not a good one – it was the first time I heard Orion use the word ‘hate’. Fredrik had asked him to tidy up his toys, and told him that until the toys were tidied up, Orion would not be allowed to watch CBeebies. I don’t know what happened to my normally beautifully-behaved, placid child, but he was replaced with a screaming creature this evening: “I don’t WANT to tidy up! I HATE tidyin’ up! I WON’T tidy up!” It was truly a sight to behold.

By bedtime he had still not tidied his toys, and I explained to him that if he’d put even half the effort he put into screaming, into tidying up, then he would have been finished in no time and he would have been allowed to watch Beebies. “So what are you going to do next time Fred or I ask you to tidy your toys away?” I asked him. “Nothin’” he replied with certainty. I don’t think he’s learned this particular lesson yet.

He was still crying as he kissed Fred goodnight and came upstairs, he was still crying when I started to brush his teeth, and I kept talking to him and magically he stopped, and his mood just seemed to transform. It was like he’d totally forgotten the last forty-five minutes, and he brushed his teeth and washed his hands and face gladly, and snuggled down with me to read Aliens Love Underpants (the current favourite book) in bed. It was like nothing had happened. Kids, eh?

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Posted in Anecdotes, Fredrik, Glove, Swimming

Posted by: Anji | September 2, 2009

Orion’s new ‘magic glove’ is here!

We’ve just been up to the Child Development Centre to get Orion’s new ‘magic glove’. For those who don’t remember, the magic glove is an orthotic Lycra glove made exactly to his specifications by a company called DM Orthotics, to help with his hemiparesis.

He’s worn it for an hour today and we’re meant to gradually increase the wearing time until he is wearing it for a ‘full school day’ i.e. 8 hours a day. I have to keep an eye on his skin after we take it off; the design of the thing (putting pressure on selected muscles) means it leaves pink/red lines all over his arm. Apparently as long as they’re gone within fifteen minutes of taking it off then it’s fine.

Considering what he was like with his splint/brace thing to begin with (he hated it with a fiery passion!) and the fact that he was only meant to wear that for half an hour a day, we’ll see how well he adjusts to wearing this new glove for almost all of his day… though as it allows him decent movement, I doubt it will be as much of an issue for him as the splint was.

These are pretty bad photographs as my flash decided it didn’t want to play nicely so I’ve had to use the on-camera flash.