Archive | October, 2008

A big walk for a little boy…

28 Oct

Two weeks ago, BC, Little Bean and I took part in the 5.5km walk as part of the Melbourne Marathon. This is because the official charity of the event is CPEC (Cerebral Palsy Education Centre) which is BC’s early intervention centre.

We didn’t win. In fact, we probably came pretty close to last. But, we were never there to win.

BC didn’t walk the whole event. It was warm and windy and there were lots of people. This made him a little nervous and a bit hesitant. BUT he started the walk in his kaye walker AND walked on to the hallowed turf of the MCG (Melbourne Cricket Ground) and did a full lap to the finish line.

They put him up on the big screen as he crossed the finish line and he got his medal. We have hung the medal up in his room next to the medal from LAST YEAR.

And next year, BC tells me, he will walk the whole way.

We raised over $1000 for CPEC on the way and walked in memory of a lovely little boy we know who was one of BC’s first friends but who was taken from this world far too early.

The best part of the day for me, wasn’t actually BC’s individual success. It was the fact that he was hardly ever alone in his walker. There were LOTS of kids (and adults!)  in walkers, wearing AFOs, in wheelchairs and on modified tricycles. It felt so great to be PART of something and not be so glaringly ‘different’. I love to believe that the more seen people are with disabilities, the less strange and different they will seem and hopefully, acceptance will follow.

My dream? Not to win a marathon, but for BC to walk down the street with his walking frame and for everyone around to not see the frame at all, just the happy boy getting about his day.

Being a big brother

27 Oct

BC has for quite a while now been able to stand and balance for a few seconds. He has even balanced up to the count of 20 in the past.

He also walks quite well over short distances with his kaye walker AND with a heavy wooden trolley at home. More recently, we bought a toy lawnmower that I have weighed down so that it’s not too light. He can push this reasonably well, although we still have a few falls.

Last week I found myself in a shop with both the boys and only a single stroller. Little Bean decided that he really couldn’t walk any more, and climbed into the pram that BC had climbed out of so that he could try to convince me to buy some chocolate frogs that were within his reach. As much as I tried to convince him, little Bean wouldn’t get out of the stroller. I was stuck. There was no way I could push the stroller and carry BC (who, though small for his age, still weighs 14 kgs now). So what to do?

I was cursing myself for not having brought the double stroller with me and wondering if I was going to have to ask a stranger to carry my son to the car (which was parked not far from the shop).

BC came to my rescue. He stood up and was able to grab hold of the handles for pushing the pram. They were a little bit high for him, but with an effort, he was able to balance himself and similar to the way he pushes the lawnmower or trolley around the home, he was able to push the stroller along.

I had to help a bit, mostly to stop him from crashing into shelves (going straight wasn’t easy!) but every time it looked like I was taking control of pushing the stroller I was shooed away.

So, we made it, very slowly, to the car with BC grinning from ear to ear and Bean regularly glancing behind him, laughing and clapping. Sometimes it’s great to have a big brother to help out.

What’s that?

10 Oct

Of all the challenges that we are faced with due to BC’s cerebral palsy, the one which has taken me most by surprise is the speech issues. I have mentioned this before. I just had confidence that given he left hospital fully breastfed and never really had feeding issues, that he had good oral motor control. I was wrong.

If I had done my research into ‘Athetoid cerebral palsy’ (which is what BC has) I would not have been so surprised. Speech issues are synonymous with this kind of CP.

Speech therapy takes up a good part of our time. We are INCREDIBLY lucky to have an amazing speech therapist and this year we’ve doubled our sessions so we have 3 a fortnight. We also have a lot of ‘mini sessions’ at home, with the skills that I’ve learnt from watching the therapist, who uses a variety of techniques to help BC communicate, including using ‘PODD’  (Pragmatic Organisation Dynamic Display) communication books, Makaton signing and  a technique called ‘Prompt’ (PROMPTs for Restructuring Oral Muscular Phonetic Targets) which is being incredibly beneficial in helping him articulate specific sound. And in the coming months, BC will be receiving a ‘Voice Output Device‘.

Phew.

So it could never be said we are not doing enough to help BC faciliate communication.

And the most important thing is, he LOVES all the therapy. He LOVES his ‘talking lessons’ and he (naturally, for a four year old!) LOVES to communicate.

It’s a LONG SLOW road, but I am so glad we’ve started early. The benefits from this very specialised therapy are slowly but surely being revealed.

Which brings me to the point of this post. BC has been very good for a long time using whatever method is most convenient to convey what he WANTS, what he LIKES and what he doesn’t WANT or LIKE. More recently he’s done great when I have elicited information from him (eg ‘Where are we going?’, ‘Whose ball is this?’ etc). It’s all great. However, it’s not quite a conversation and he has NEVER asked a question.

Until yesterday.

Out of the blue, as we were walking back from the park, he pointed to the nearby TAFE school and asked, quite clearly – ‘What’s that?’. I nearly cried. I still haven’t stopped doing that when he does amazing things ;-).

So I told him.  And he was fascinated. It’s like all of a sudden a huge light switched on. And now he’s trying to catch up asking all the questions he’s been curious about for ages but never thought to ask about.

In the last 24 hours, the questions have been nonstop -

‘What’s that?’, ‘Who’s that?’ (eg on the phone), ‘Where’s Dad?’ I could go on and on.

I’m exhausted from answering questions, but TOTALLY exhilarated.

It’s a conversation I’ve been waiting for for a very long time ;-).

Respect?

9 Oct

Our toilet training journey is definitely a case of two steps forward, one step back. Just when I think we are on top of it, there’s a lapse.

At the moment, we seem to have numbers 2s totally sorted. BC will let me know in good time (by signing as well as saying ‘toilet’ or occasionally ‘poo!’). I am very very proud of him and very excited that he’s achieved this goal. Yay!

BUT numbers 1s seem to be a different matter. It seems to be much less important to him – and far less uncomfortable to have urine soaked undies. He just doesn’t seem to mind.

And going to the toilet is ‘boring’. He told me so.

It’s not such a big deal at home. I’d rather clean wet clothes than soiled ones, that’s for sure.

At childcare, the last three weeks he’s had accidents. Now, in the past, if he ever had any sort of accident (spilt food, vomit etc), his clothes were washed, dried and folded waiting for me next week.

But I’ve been a bit upset to find these last three weeks that his wet clothes have just been thrown directly into plastic bags, so by the time I pick him up in the evening,  I am also picking up a heavy plastic bag that reeks of urine.

It makes me sad that he’s still not on top of his toilet training, but THIS plastic bag makes me so much sadder.

I have been really surprised to learn through asking various people that this isn’t actually unusual. This is in fact, the NORM in many places. Now, I can understand if he was at kinder and there were no washing facilities there, but at a formal child care centre with washing machine, changing facilities etc AND with them having funding for an additional assistant in the room to help with BC, it just seems wrong to me that someone can’t, at the very least, give the clothes a bit of a rinse. I’m sure it’s not a favourite job, but I would have thought part and parcel of the job, especially when dealing with a child with additional needs.

Am I just being oversensitive? Are my expectations to high? I think not. I think it’s a very simple question of respect.

Park therapy

3 Oct

I’ve mentioned in past posts that we are pretty busy with therapy for BC. To sum it up, he attends an Early Intervention program one day a week, therapeutic horseback riding once a week, extra speech therapy once a fortnight, swimming (as often as we can) and regular osteopathy, chiropractor, point percussion and feldenkrais appointments. Phew.

It’s exhausting.

BUT it’s all worth it. There’s not a single thing we do that we don’t see benefits from. AND I’d like to make very clear, there’s not a single thing we do that he doesn’t enjoy. We wouldn’t do the therapy if he didn’t like it, regardless of any potential benefits.

Because we’re so busy, I made a decision that during school holiday periods when there’s no early intervention and horseriding, that we would do NO therapy, NO appointments, NOTHING.

So what do we do? We hang out. Some days the boys sit around in their pyjamas until lunchtime watching ABC Kids on TV while I either get stuff done or catch up on emails, with friends on the phone or (as often happens) sit with them and enjoy the fun of Macca Pacca, Upsy Daisy, B1 and B2, Dorothy the Dinosaur, Caillou, Postman Pat, Justine Clarke and Rhys Muldoon on Play School etc etc. It’s fun. Even more so now that BC loves to give me a running commentary on everything that’s happening. I can’t get enough of hearing him speak. Every little word is a mini miracle to me. The Little Bean meanwhile, just wants to dance. So he dances at any sign of a song. Otherwise he’s loving driving our little Postman Pat van all around the loungeroom.

In case you’re getting ready to report me as an unfit parent, of course it’s not all about sitting in front of the TV. Even for hardened TV viewers like my kids, a few hours of TV at a time is definitely more than enough. We’ve been doing lots of playing as well – puzzles naturally, playdough, painting, building blocks etc.

Out of the house, we’ve spent some of the time visiting friends and favourite places (we love the Museum!). BUT MOST OF ALL we spend time at our local park.

We are very lucky to have a very big park near our house complete with wide open spaces for playing ball and flying kites, a duck pond (huge favourite with animal loving Little Bean) and TWO playgrounds to choose from.

I love both these playgrounds and I love taking my boys there. I love it even more these days now that they can play together – sit on opposite ends of the see saw, swing side by side, take it in turns to drive the ‘car’. It’s so calming to watch them play together.

And I’ve realised, visits to the park are akin to even the very best of the physical therapy for a little guy like BC.

A year ago, I would hold him from behind as he ‘climbed’ up the rope ladder to the top of the slide. NOW he can do this virtually on his own. I am still behind him, just in case, but he has mastered the skills for the most part. He just can’t right himself if he loses his balance. But he’s working on it. And as for going down the slide, the months and months he worked on bringing his feet out in front of his body so he could go down the slide has FINALLY paid off and he can now do this on his own.

6 months ago, he needed to sit in the half shell swing, now he can sit, unassisted in the ‘big kid’ swing. We don’t go too high up (despite his demands!) but considering he doesn’t have the balance to stand unassisted for more than 10 seconds, I find it amazing that he can stay seated while in a swing in motion.

There are more things I could share, but I think you get the idea. The park is just a great place for him to be.

There’s still a lot more to ‘master’ in the playground. There’s the flying fox he wants to be able to do on his own. There’s the regular ladder that he wants to do on his own. And I still carry in my heart the possibility that one day he’ll be able to walk around the park on his own, rather than with his walking frame, getting bits of tan bark stuck against the wheels and stopping him from moving forward.

There’s also dealing with other kids in the playground. I see that kids fall into a few different groups. There are some that try to help him (even when he’s not looking for help!), those that get frustrated by his slow movements (especially those waiting turns at the top of the slide) and then those that are fascinated by his walker and slow movements almost to the to point where they are more interested in watching him than playing. It’s interesting.

BC copes pretty well with most of these variables, but I just can’t wait for the day that there’s none of these variables and he’s just seen as another kid in the park.

I could go on to talk about accessibility in parks and playgrounds for the disabled, but that would be another WHOLE LONG post.

And I don’t have time for that right now, because it’s nearly the end of the school holidays and we’re off to the park ;-).

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