Look at me

It's not much to most parents, but we are chuffed. Look at this:

Yes, Mister Determined has mastered the skill of sitting cross-legged. I am not sure why and how he suddenly managed to do this. We have not done any physiotherapy this year apart from Christine's Feldenkreis sessions. He has done sports and gymnastics at school (although I have no idea what he does there, I know he loved doing jobs for the PE teacher) and swimming, and now with the hot weather we swim every day after school. Maybe its all that swimming... who knows.

This may not sound like a big achievement to most, bur consider the social implications. It means that he can sit on the floor with his friends at school, during story time, Assembly, etc. Sitting on the floor was just very hard for him, as he could really only sit with both legs stretched forward. That's not a position most people can sit in comfortably without toppling backwards. So most of the time, Mister D. was given a chair to make him more comfortable. Then, on Monday, he just went and sat cross legged at Assembly, and his class teacher nearly fell over. When I came to pick him up she stood at the door waiting for me, to excitedly tell me the news.

Oh, the joy of small victories.

Reverse Competition?

If you read the comments on my posts, you may have noted that Anonymous didn’t really like the letter Mister Determined’s school wrote to the Council to get a disabled parking spot outside the school gate. I’ve been thinking about it all day, mulling it over. Then, suddenly, I think I “saw” the issue.

The problem lies not in the school’s letter. It’s the fact that, as the letter states, Mister D. “refuses to be treated differently or to use a wheelchair”. Anonymous feels that this line is written “as if those lazy kids in their wheelchairs just aren't trying enough”.

That got me thinking. I’ve been mulling this over all day today. Anonymous was getting to something here.

My first reaction was to defend the school. But I think that might not be at the heart of this issue.

It’s a fact that Mister Determined now refuses to use his wheelchair. He has learned how to walk independently, albeit in a wonky and wobbly way. At the moment, he has a deep cut under one toe, is missing a piece of skin the size of a fifty cents coin under the ball of his other foot, and has a grazed knee and elbow. His legs and knees are full of bruises. These minor injuries are all due to the way he walks. It’s not as if walking comes to him easily. But can I blame him for wanting to?

Somehow, I just don’t think the kid is making a value-judgement by choosing to walk over using his wheels. I think he’s just doing the best he can to fit in, like any 7 year old would do. Surely no one would suggest that I get him to use a wheelchair to be on even par with those kids born with CP who do? He’s able to walk because he worked hard on this skill for many years and, because he’s lucky because he has, as he puts it “only a little bit of CP.” I don’t think he thinks any less of other kids who use wheelchairs. He still uses his for longer outings (like a recent school trip to the zoo) and knows the wheels are a tool to get you places (it’s people’s reaction to it that is the problem).

I don’t know who Anonymous is, nor do I think that he or she is judging my kid in any way. But Anonymous has hit a sore point here for that I have often struggled with to put into words.

Why is there this “reverse competition” amongst parents of disabled kids. You know the “mine is worse than yours” kind of competition.

I guess this “reverse bragging” is nothing unusual, it happens in many playgroups and mothers groups. You remember, competing about whom had the worst birth, the most interrupted nights, the sorest boobs, or the biggest puker. Most of the time, it’s some harmless and good natured fun. But do we - parent/carers and our kids - really need this? We get judged so much as it is. Do we need to judge each other as well?

I regularly get that “Oh, but your kid is really mild” reaction from other parents. I never know how to react to that.

I know there are many kids out there far more severely affected by CP. Does that invalidate my experience, my story? Does that invalidate the struggle my kids face? Should not talk about our daily issues, because they are insignificant compared to those that others face? Should I just shut up?

Sometimes people tell me in no uncertain terms that I’ve got nothing to complain about. Sometimes people stop up when they realise I’ve got two – that somehow seems to bring me on even par with a mother of one severely disabled kid. How does that work?

Mister Determined finds walking very difficult. He falls on a daily basis. He falls on grass, on our wooden floors, on asphalt and concrete. He bumps against walls and furniture. He is a walking talking bruise. He was terribly upset today, because the open skin on his foot meant he couldn’t join his classmates in their weekly swimming lesson, the highlight of his week.

These are minor issues compared to those some of the kids with CP have to deal with each day. I would not want to de-value them. And it’s about high time society changes it’s attitude towards people with disabilities – and can I recommend a wonderful UK add posted on Terrible Palsy that is a must see.

But I can only tell our story.

This blog is about my personal experience, my journey, as determined by my kids and their lives. I enjoy writing it. I think it has a right to exist.

And this is why I love Mister D.'s school

Here is a letter Mister Determined’s school sent to the local Council.

Have a read, and see if you’re as impressed with them as I am.

“We currently have a student in Kindergarten (…) who suffers (sic - OK, I don't' like that term, but read the rest of the letter) from Cerebral Palsy. Mister D. is an amazing and determined young man. Although his disability makes walking difficult and very tiring for him (his parents were originally told he would never be able to walk) he insists on participating fully in all the activities of his class and refuses to be treated differently or to use a wheelchair.

This determination to be treated like the other children encompasses all areas of the school day, including drop-off and pick up. Mister Determined insists that his mother parks outside the school with the other parents and walks him in and out of school through the pedestrian gate. This usually means walking several hundred meters along (…) Avenue as the parking spots are often full of cars. This can be severely fatiguing for Mister D., particularly at the end of the day.

We would like to ask the Traffic Committee to designate the spot closest to our school’s crossing as a disabled parking spot. This would allow MD’s mother to respect his desire to be treated like his peers while ensuring he is capable of reaching the car without undue distress.

Mister D.’s parents and the school are committed to supporting this determined young man and consider emotional support to be of equal importance to physical support. I hope the Traffic Committee will also support him by making this simple change to an existing parking spot. While we appreciate that there is no guarantee that spot will always be free, its availability on a majority of occasions will help us to support his resolve to fit in.”

Gotta love them!

And yes, the Council approved. Should be in place for next year.

This is why I love Christine

Have a look at this:

Mister Determined has been fascinated for a long time now by high heeled shoes. So when he spotted my friend Elizabeth's high heeled boots, he was excited - and even more so when she allowed him to try them on. Christine, our Feldenkreis therapist was here for a session with Mister D. Not only did she let him try out the boots, she actually felt he walked really well in them (as they forced him to slow down and concentrate on his walking) and we should buy him some. And then, she took is hand and danced with him!


This is why I love her. Your average therapist would not even consider letting a kid with CP and serious balance and walking issues put on high heeled boots. Christine, on the other hand, is prepared to work along with Mister Determined's interests. After he took off the boots, he slipped in Chrisinte's shoes, and they spend the rest of the session walking around the house, and up an down the stairs, in her shoes, while she guided him.

Isn't this woman gorgeous?

And don't you think our oldest would make a nice trannie?

The Tooth is Out

This morning was THE morning. Mister Determined's wobbly tooth is out, and he's got himself a nice smile with a gap, and a small new adult tooth behind it. Only trouble is, we can't find the tooth.

Mister D. had a bad dream last night, and came to our bed. I was sharing it with Boo Boo, who was also having teething trouble, and kept waking up in the night, so Hubby went to sleep in his other bed and I kept Boo Boo with me - no point both of us having to wake up all night. So at three this morning, Mister D. joined us. It took him a while to settle back into sleep - he had to come down from his bad dream, and then he realised that his tooth was out. We tried to find it this morning, either in his bed, or in mine, or somewhere in between, but it is gone. He must have swallowed it in his sleep, which he things exceptionally cool, especially when he things about how it will come out. Don't worry, I'll spare you the toilet humour.

This reminds me, I've had to tell the boy about Santa. You see, last week he had a bad dream one night (yes, it's that season again, it comes with being over-tired) and was very worried that the Tooth Fairy would come into his room in the night to take his wobbly tooth and leave money (I mean, it really is a strange thing to tell our kids if you think about it). He doesn't like the idea of someone coming into his room in the night that is not Mum or Dad - and quite rightly so, I'd say. His Oma Ineke told him a while ago that the Tooth Fairy is not real, and that it's just Mum exchanging the tooth for money. But see, here was his predicament. He wanted to trust me that there is no Fairy, and no none can come into our house without having a key or us letting them in.

But then, he asked me, what about Santa?

Fair question.

Let me tell you a secret, I replied, and told him that Santa too was not real. I explained that we commemorate the good deeds of a Bishop Saint Nicholas who lived a long time ago, etc. etc. He wasn't so sure at first, until he understood that all those Santa's he sees are people dressed up. You have to remember, we were having this conversation in the middle of the night. But dressing up, now that is a concept he can understand!

So Mister Determined feels himself a big dude now. He knows about Santa. He knows about the Tooth Fairy. And he's got a big tooth. This morning, he was checking his hands "to see if I've got wrinkly skin yet"!

And Possum, you may wonder? Of course I told Mister D. that the info on Santa was a secret he wasn't to tell other kids. Of course, the first thing Mister D. did that morning was tell his little brother, and his whole class, that Santa isn't real. I don't know what the kids in his class did (sometimes I would love to be a fly on the wall at school) but Possum just shrugged his shoulders - and decided to ignore it.

He just doesn't want to know about it. I love it.

Fatigue

We're heading to the end of the year and it shows. Boo Boo is the only one who is her normal self - all the other inhabitants of this house are showing clear signs of fatigue.

Mister D. is still on a bit of a high from his recent theatre experience - but he's getting difficult, is rubbing his eyes all the time, and asks for regular hugs, all signs of tiredness. Possum has been pretty much unbearable for two weeks now. He doesn't seem to manage to talk anymore, he just whinges and whines and cries. Hubby has entered the busiest time of his working cycle, and he's temporary denoted to part-time parenting. And I am stuggling with "Mamma Fatigue". After seven years of full time mothering I admit oficially to being fed up. It's time for a break, time to do something for myself beyond blogging and gardening (which I both love, don't get me wrong). I need something more substantial, something with a goal to achieve. So I've been trailing the internet to find a Shotokan Karate Dojo nearby. I need to go and get that black belt I have been meaning to get years ago...

Shakespeare Festival

Can I just take two minutes of your time to tell you how proud I am of my oldest son?

Each year Mister Determined’s school holds a Shakespeare Festival, in which every class in the entire school performs (part of) a Shakespearean play. Yes, the entire school. Yes, that includes the Kindy class. And all the kids join in. Yes, all of them – big and small, tall and short. Including the special needs kids. No one is left out (unless a child really, really doesn’t want to) and a part if found for everyone. It doesn’t have to be a speaking part, or a long part (and some main roles are shared between two actors), but everyone gets a spot.

This year’s Kindy class, the one Mister Determined is in, performed “The Seven Ages of Man” (probably better known as “All The World’s A Stage” from the play “As You Like It”). It’s not a very long piece, but not exactly a walk in the park either for a bunch of five and six year old kids.

Now, as it happens, one of Mister Determined’s passions is “doing shows”. This involves him standing in front of an audience, jumping and dancing around with a microphone (either his toy one, or in an emergency an empty roll of toilet paper will do). Every since his Uncle Jonno took him to a Hi5 and High School Musical performance, the boy is obsessed with the world of performing. He just loves theatres and stages. When the local shopping centre puts on some fashion show, we spend a few hours sitting near the empty stage in between shows, with him and his brother jumping on and off the stage “doing shows”. A raised surface in our garden provides a stage, as does the odd stool in the kitchen.

But really, he loves the real stage, a wooden one on which his shoes make a “toc” sound when he walks. A stage with a black curtain to create a backstage behind which to get changed. A stage with steps to get on to. A stage with an auditorium in front of it, where the audience sit, in numbered chairs, tickets in hands, anticipating the show, clapping and cheering. He loves it all. How lucky is he, that his school does just that, each year. Yes, the Shakespeare Festival is held in a local theatre, a real one. Despite the costs (the ticket sales never quite cover it) the school insists that the children should have the experience of a real stage, as it gives weight to their performance, and the effort they have put into it.

So this week was Shakespeare Festival. Since last term the children have been learning their lines, practicing the movements, trying on their costumes. And now, finally, on Thursday morning, the big moment was here.

I am supposed to say “I am not sure who was more nervous, me or him” but that’s not true. I was definitely more nervous than him. He was certainly excited, but nervous was not the word. He had gone off to school the morning of his first performance happy as Larry. He was going to have his big moment on the stage. He seemed so happy – but my biggest fear was that it would all prove too exciting for him, and he would “loose” it at the very last minute, burst into tears, and not make it.

Later that morning, Boo Boo, Hubby and I sat in the red velvet chairs waiting for the first performance, my legs jiggling with nerves. The Principal came on to introduce the Kindy class, the room went pitch dark, the curtain went up, and out they came, skipping to their seats on the stage, twenty five year olds dressed all in black. They sat in two groups, with a small platform between them. They told the story as a group, and in between, in small groups of two or three kids, they acted out the seven stages of man. It was absolutely fantastic, absolutely amazing. No one forgot their lines. They sailed through the whole thing, and the acting out was hilarious. They had all the mime, the facial expressions, and funny little props to become their characters – plastic swords, beards and wigs, school bags, veils – it was so precious.

After the kids were done, we got to see the Year 1 and Year 2 kids - it was an absolute hoot! Year 1 did “The Tempest” with parts sung rather than acted, and Year 2 did “The Winter’s Tale” with dancing to Frank Sinatra songs. I had tears in my eyes from laughing so much.

But I admit, the tears were not only from laughing. They were mixed with tears of pride. You see, Mister Determined was wonderful. He looked into the audience with a steady, unflinching gaze. He said his lines, all of them loud and clear. I could clearly distinguish his voice. He never faltered. In fact, there were a few times when he led his group, and the kid next to him looked at Mister D. a few times for reassurance. He acted out his part – that of a guard taking a prisoner to the Judge - with gusto. His solo line was “Banished, to Australia”.

This was the kid that did not speak until he was four. And here he was, confidently performing Shakespeare on stage with his classmates. I was just so proud!

Hubby and I sat there, beaming. And it didn’t stop after the show. So many parents came up to tell us how well he’d done, and how he’s found his vocation. Boo Boo loved it too; she sat through the whole play, enjoying it. She never cried, never complained, and only got vocal when she recognised her brother and our friend William.

It was just wonderful. And the next evening, on Friday, they got to do it all over again. This time we left Boo Boo at home with the babysitter and took Possum with us (who felt like a real big boy going out in the night). Oma Ineke came too, making the evening even more special. Again he was not nervous. Again he said his lines clearly and loudly. It was a very special night.

Yes, maybe he has found his vocation. Who knows? Time will tell. But at the moment, we’re just brimming with pride.

This is what an organised household looks like - not

Yummie Yoghurt

Birthday Party Trouble

Mister Determined's birthday is coming up, and I don't know what to do.

Unlike last year, he wants to invite his whole class. That's OK by me. But the other thing he wants to do is "do a show" for them. That would be OK if his "shows" would be the sort of thing other kids enjoy. But I'm afraid that they are not. His current repertoire includes loud singing and shouting, none of which with any theme or logical thread. Off course, we watch his shows daily, and clap profusely, but 20-odd six year olds just won't react in quite the same way.

Hubby and I are thinking of getting a clown or magician to come who will let Mister D. be part of the show. Ideally, we'd go to one of those soft play playgrounds to get him out of his familiar surroundings so he feels less in control, and less like the boss. Thing is, we really can't afford to do both (if you know that we're talking about $ 300 plus for a performance, and the same amount again for hiring one of those soft play places). The other thing he'd really like is a pool party. Trouble is, at his age, the kids get dropped off, and there is just no way I'm going to be responsible fro 20 plus kids in my pool - especially not with its resident snake underneath. I know most of these kids can swim, and I know snakes will hide away when they see a throng of kids coming (who wouldn't) but it would be just my luck that something super-unusual happens. No way.

So I'm mulling over the options (leaning towards the show at home, with a possibility for a swim after the party on the condition that the children's parents are present - no supervising parent, no swim). Argghhh, last year's birthday party, sad as it was, was definitely easier....

Teeth Trouble

Mister Determined considers himself a big boy now. You see, he’s got his first adult tooth.

Some evenings ago Hubby spotted it when helping with the evening teeth-brushing ritual. We were both very surprised – the tooth was quite far out, and he hadn’t said a thing about it, it was just there, right there in the bottom of his mouth, hiding behind his left milk tooth. We figure that it must have come up in the recent school holidays, and with Mister Determined on a three times daily dose of painkillers because of his finger, he probably wasn’t too bothered by it. Still, you’d think he’d have felt is and said something.

Anyway, I rang the dentist, and she told us to start wobbling the milk tooth in front vigorously every day to help ease it out – otherwise she’ll have to pull it. So we’ve been wobbling. Mister Determined is not too keen on all this wobbling stuff, but the tooth is now loose, especially after Mister D. bit on a hard cracker the other day (and he’s been asking for soft food ever since). It seems a matter of days now until he can proudly show off his big tooth. He’s a bit worried about it all – will it hurt? Will there be lots of blood? What will it feel like? But he’s proud as punch the same time.

The funniest thing about the whole tooth episode, though, is his little brother’s reaction. The evening we discovered the tooth, Possum threw a massive tantrum – he is jealous beyond belief! Arghhhh, it’s sooooo hard being a younger brother.