It's late tonight, so just a short post for today. I know I have a whole busy week to catch up with, but with the boys on holidays, life is hectic at the moment. But don't worry, I will get there.
So, let me tell you how lucky I am to have made a new friend last week. When Boo Boo took her Koala for a drive to Oma and Opa's house last week we stayed for a play, and by the time we made our way back home, it was getting dark. The chair comes with some lights, so we figured we might as well turn them on. They were actually quite useful in highlighting the path in front of us. But is also made us very visible to a family living between us and Oma and Opa's house (which is literally just around the corner from our house) returning home. One of the kids noticed the wheelchair and came up, soon followed by his mum. We started chatting, and I mentioned I had an older child with the same condition. The mother wanted to know where I live, and she seemed delighted to discover how close we were.
"I'll come and see you some time soon" she said.
I was looking forward to that, but didn't expect her to turn up the next day. Soon I found out why.
You see, my new friend Susan has nine year old triplets. Yep, three for the price of one! And two of them deal with some ADHD and High Functioning Autism (or Aspergers).
A fellow 'special needs' mum literally around the corner!
And you know what? She's really nice too!
How lucky can I get!
Someone to chat to. Compare notes with. Someone who only needs half an explanation to understand some of the daily, tiny things that make life difficult. Wonderful!
Sure, our kids have different issues. But we struggle with the support services, with other people's prejudices, with the daily moments of exclusion our kids face.
We have since met Susan's kids, and Possum and Susan's boy enjoyed a play together . Boo Boo was delighted to have two older girls in the house, and Beaver just loves another adult to chat to.
The only pity is that she has two dogs. I am very allergic to all things furry and Possum is petrified about dogs. But we will go and pop round anyway. This is just too wonderful.
OR TWO
Monday, 30 June 2008
Sunday, 29 June 2008
Big Week - Monday
On Monday our trial period finished, and Scott from Northcott Equipment Solutions came to pick up the Koala. We had bitter tears, it was truly sad.
"Me" "More" "Car" "Car!" "CAR!" And then lots of crying.
Thankfully, we still had access to the Roller Rad we're borrowing from The Spastic Centre. But Boo Boo knows which chair is better.
That evening, we sat around the table with Oma Ineke and Opa Keith, in which we discussed all the prices and specifications of the various wheelchairs we trialled.
It must be said, we came to a fairly quick solution – the Koala is the clear winner all round. It's such a versatile chair, and the fact that it is clearly designed for young children shows in daily usage. It is a gorgeous little chair, very easy to drive and manoeuvrable, and cute to look at on top. It's lower than most other chairs, which means the child is closer to the level of other children, yet the chair can be moved up to reach a table.
This might not seem like much, but on the weekend we had some kids visiting, and Boo Boo was on their level, which is unusual for her. She also manages to drive the Koala into the pantry, pick up a plate or bowl, and place it on to the kitchen counter all by herself by lifting the chair up. Also, once we hit the shops and cafes, we won't have to transfer to a high chair anymore, or have her sit on my lap while I balance a wriggly child and eat food with one hand. We can simply move a chair out of the way, and raise Boo Boo's wheelchair up to the table.
So, that was an easy decision. Then to the money side of things.
We were working hard on the paperwork to put in an application with PADP, the NSW government programme that funds equipment for people with a disability. But in the end, we decided against it.
You see, the inside knowledge on PADP (coming from someone working for the Department in charge of PADP, the therapists at The Spastic Centre and other parents' experiences) is that they fund powerchairs only about 6 months before a child goes to school. That's right. 6 months before school, to give the kids 6 months to learn how to drive the chair before school. This means the child will be about 5 years old. Yeah, right. Whatever happened to the Early in Early Intervention?
I've been reading up on introducing powered mobility to young children, and basically the research suggests that children with a physical disability should be introduced to a power chair at about the same time other children learn to walk. Children of 20 months were found capable of handling electric wheelchairs if they were taught how to use them. So, with Boo Boo 2 years and 3 months and a bright little button, we felt she was perfectly ready. But our chances of actually getting a chair funded were very small. I thought about putting in an application anyway to make a point, but...
You see, it takes about 3 months or so for PADP to decide on an application. And in the unlikely event that our application would get approved, the average delivery time for a wheelchair is 18 months. So, we decided that wait was not worth it. Luckily we have some very generous family members helping us out (and here goes a big thank you to Opa Keith and Oma Ineke, Oma Helma and Opa Manfred, Tante Anita and Marianne!).
On Tuesday morning, I rang Scott and ordered a Koala for Boo Boo.
And didn't we get lucky!
As it happens the Koala is undergoing a makeover, and a new model is coming out soon. Which means the current demonstration models will not be of use much longer, and guess what, they are for sale! So, we are buying the very same chair we had in the house this week, slightly under the full price. Scott will give it a good service, fix a broken tail light, and add a bumper bar, and when it's ready, he will come and install an attendant control (which is a joystick device which overrides the normal operation and gives an adult control over the chair). Then he will come and deliver the chair early next week. Yes, early next week! Possibly as early as Tuesday. Can you believe that!
"Me" "More" "Car" "Car!" "CAR!" And then lots of crying.
Thankfully, we still had access to the Roller Rad we're borrowing from The Spastic Centre. But Boo Boo knows which chair is better.
That evening, we sat around the table with Oma Ineke and Opa Keith, in which we discussed all the prices and specifications of the various wheelchairs we trialled.
It must be said, we came to a fairly quick solution – the Koala is the clear winner all round. It's such a versatile chair, and the fact that it is clearly designed for young children shows in daily usage. It is a gorgeous little chair, very easy to drive and manoeuvrable, and cute to look at on top. It's lower than most other chairs, which means the child is closer to the level of other children, yet the chair can be moved up to reach a table.
This might not seem like much, but on the weekend we had some kids visiting, and Boo Boo was on their level, which is unusual for her. She also manages to drive the Koala into the pantry, pick up a plate or bowl, and place it on to the kitchen counter all by herself by lifting the chair up. Also, once we hit the shops and cafes, we won't have to transfer to a high chair anymore, or have her sit on my lap while I balance a wriggly child and eat food with one hand. We can simply move a chair out of the way, and raise Boo Boo's wheelchair up to the table.
So, that was an easy decision. Then to the money side of things.
We were working hard on the paperwork to put in an application with PADP, the NSW government programme that funds equipment for people with a disability. But in the end, we decided against it.
You see, the inside knowledge on PADP (coming from someone working for the Department in charge of PADP, the therapists at The Spastic Centre and other parents' experiences) is that they fund powerchairs only about 6 months before a child goes to school. That's right. 6 months before school, to give the kids 6 months to learn how to drive the chair before school. This means the child will be about 5 years old. Yeah, right. Whatever happened to the Early in Early Intervention?
I've been reading up on introducing powered mobility to young children, and basically the research suggests that children with a physical disability should be introduced to a power chair at about the same time other children learn to walk. Children of 20 months were found capable of handling electric wheelchairs if they were taught how to use them. So, with Boo Boo 2 years and 3 months and a bright little button, we felt she was perfectly ready. But our chances of actually getting a chair funded were very small. I thought about putting in an application anyway to make a point, but...
You see, it takes about 3 months or so for PADP to decide on an application. And in the unlikely event that our application would get approved, the average delivery time for a wheelchair is 18 months. So, we decided that wait was not worth it. Luckily we have some very generous family members helping us out (and here goes a big thank you to Opa Keith and Oma Ineke, Oma Helma and Opa Manfred, Tante Anita and Marianne!).
On Tuesday morning, I rang Scott and ordered a Koala for Boo Boo.
And didn't we get lucky!
As it happens the Koala is undergoing a makeover, and a new model is coming out soon. Which means the current demonstration models will not be of use much longer, and guess what, they are for sale! So, we are buying the very same chair we had in the house this week, slightly under the full price. Scott will give it a good service, fix a broken tail light, and add a bumper bar, and when it's ready, he will come and install an attendant control (which is a joystick device which overrides the normal operation and gives an adult control over the chair). Then he will come and deliver the chair early next week. Yes, early next week! Possibly as early as Tuesday. Can you believe that!
Friday, 27 June 2008
Big Week
I have 5 minutes of stolen time to let you know we've had a big big week.
Last weekend, I took the wheelchair and ramp to a car dealership and spend a few hours trying different Tarago models and various permutations of how to fold chairs to get the wheelchair and ramp in the car. It was an enlightening exercise.
On Monday, we ordered a wheelchair for Boo Boo. We also made a new friend that day.
Tuesday was the last day at school for the boys, and a bad day for Beaver - he had to endure a pretty unpleasant teasing experience at school that day.
Wednesday was the first day of the nearly 4 weeks winter holiday, and our big day at Westmead Children's Hospital with our brand new top neurological team.
On Thursday, we trialled a Mulholland walker for Boo Boo.
Today, on Friday, I'm trying to relax a bit. Boo Boo is sleeping, and in between playing with the boys, washing up pots and pans, doing lots of laundry (the weather is sunny and windy, so perfect for hanging clothes on the line) and Mike's noise sawing the railings for the ramp, I've literally stolen five minutes to write this post. If I have the energy, I will write again tonight (although I admit that Fridays I generally collapse in front of the TV). If I don't make it, I will post tomorrow. About the incident at school. The visit to the neurologist. Our new friend Susan and her three kids. And the walker. And just to give you a hint on the latter, here is a picture. The OT was a bit worried that giving Boo Boo a power chair might make her a bit lazy. I think giving her a sense of freedom has given her a motivation to get walking. What do you think?
Monday, 23 June 2008
Circus
The circus is in town! - well, in the next suburb.
Seeing the big red and white tent took me straight back to my childhood. Oh, the magic of the circus! The dark tent with the lights shining on the ring, transforming it into the centre of the universe for the time of the show. The clowns, the acrobatics. The smell of candy floss and popcorn. Ah, the circus is pure magic.
And as a mother, what was my first thought? Must take the kids.
I rang around the rest of the mob, and in the end, the whole family went off to the circus yesterday. It was absolutely lovely, and I think the children enjoyed it as much as I did when I was a little tacker.
Beaver sat throughout the whole performance with his earmuffs on, transfixed onto the centre ring. As always, he jerked every time there was an unexpected or loud noise, but otherwise his whole body was tuned to the show. In the intermission, he was full of questions about how the circus folk make it all happen. He couldn't possible name his favorite act afterwards, they were all so good. He wanted to know what he needs to do to learn to do the things the acrobats did. I told him it's all down to gymnastics and stretching. I must ask his gym teacher if there is a new fervor in his gym work now...
Possum was both enthralled and frightened. He was beautiful to watch, with his big dark eyes wide open in a mix of wonder, admiration and fear. He liked the clowns very much, but was so in awe of the acrobatics that at times he had to go and sit on his Daddy's lap. And I must say, what these people do with their bodies is pretty bloody amazing, and one act was seriously scary... He didn't have a favorite act, and when I prodded further by asking which job he would like in the circus, he said he wouldn't want to do any of the acts, but he would love to be one of the men dressed in black who bring and remove the props. Such a sensible and practical boy, this one...
Boo Boo just simply loved it. At first she was really frightened and unsure, what with all the strobe laser lights and loud music at the beginning. But once the show started she was in heaven. She stood on my lap dancing away to the loud music (and despite the fact that she can't get her body to move as she likes, she managed to keep the rhythm) and asking for "more, more". The lady on the trapeze was definitely her favorite. She watched her with shining eyes and kept pointing up high into the circus tent and saying "Me. Up". Not sure if this is a realistic career path for her, but you never know with these kids of ours...
And I had a great time. I haven't had that much fun in a long time. Just plain and simple good fun. The show was good - all amazing humans, and no need to feel bad for trained animals - with genuinely funny clowns and amazing acrobats. There was one hairy moment with the Wheel Of Death where even the props guy looked seriously worried for a second or two (you never know if it's part of the show). But all turned out well, and off course they had the audience totally after that moment, and the tent rocked.
But the best thing was to be there with so much family, and to see all those wide-eyed children experiencing a moment of wonder and magic. I think I spend as much time looking at the kids as I did looking at the show. A perfect Sunday afternoon.
The kids, of course, want to go again. I'm tempted too...
Seeing the big red and white tent took me straight back to my childhood. Oh, the magic of the circus! The dark tent with the lights shining on the ring, transforming it into the centre of the universe for the time of the show. The clowns, the acrobatics. The smell of candy floss and popcorn. Ah, the circus is pure magic.
And as a mother, what was my first thought? Must take the kids.
I rang around the rest of the mob, and in the end, the whole family went off to the circus yesterday. It was absolutely lovely, and I think the children enjoyed it as much as I did when I was a little tacker.
Beaver sat throughout the whole performance with his earmuffs on, transfixed onto the centre ring. As always, he jerked every time there was an unexpected or loud noise, but otherwise his whole body was tuned to the show. In the intermission, he was full of questions about how the circus folk make it all happen. He couldn't possible name his favorite act afterwards, they were all so good. He wanted to know what he needs to do to learn to do the things the acrobats did. I told him it's all down to gymnastics and stretching. I must ask his gym teacher if there is a new fervor in his gym work now...
Possum was both enthralled and frightened. He was beautiful to watch, with his big dark eyes wide open in a mix of wonder, admiration and fear. He liked the clowns very much, but was so in awe of the acrobatics that at times he had to go and sit on his Daddy's lap. And I must say, what these people do with their bodies is pretty bloody amazing, and one act was seriously scary... He didn't have a favorite act, and when I prodded further by asking which job he would like in the circus, he said he wouldn't want to do any of the acts, but he would love to be one of the men dressed in black who bring and remove the props. Such a sensible and practical boy, this one...
Boo Boo just simply loved it. At first she was really frightened and unsure, what with all the strobe laser lights and loud music at the beginning. But once the show started she was in heaven. She stood on my lap dancing away to the loud music (and despite the fact that she can't get her body to move as she likes, she managed to keep the rhythm) and asking for "more, more". The lady on the trapeze was definitely her favorite. She watched her with shining eyes and kept pointing up high into the circus tent and saying "Me. Up". Not sure if this is a realistic career path for her, but you never know with these kids of ours...
And I had a great time. I haven't had that much fun in a long time. Just plain and simple good fun. The show was good - all amazing humans, and no need to feel bad for trained animals - with genuinely funny clowns and amazing acrobats. There was one hairy moment with the Wheel Of Death where even the props guy looked seriously worried for a second or two (you never know if it's part of the show). But all turned out well, and off course they had the audience totally after that moment, and the tent rocked.
But the best thing was to be there with so much family, and to see all those wide-eyed children experiencing a moment of wonder and magic. I think I spend as much time looking at the kids as I did looking at the show. A perfect Sunday afternoon.
The kids, of course, want to go again. I'm tempted too...
Sunday, 22 June 2008
Thursday, 19 June 2008
Soccer Mad
Today a big square box arrived in the mail. As soon as the boys were home, they spotted it and ran over to it. After some extensive examination, it was found that it had all three the children's names on it, and came from a place called "Belgium"! So with mounting excitement, they ripped the box apart. Out came a European Championship real leather soccer ball. Beaver instantly lost interest. Possum whooped with joy. Boo Boo said "ball - me!"
And then, Possum and Boo Boo proceeded to play soccer in our living room. That is actually possible - our house has been emptied of most furniture while Boo Boo learns to drive. Somewhat Zen, although it feels a bit like we're living in a warehouse...
Anyway, there was a 5 year old boy, being chased by a 2 year old girl in a powerchair, all followed by a 7 year old boy who decided he didn't want to play but had to referee the other two. And mum joined in for a little while too.
Mayhem.
Madness.
Fun.
Thank you Oma Helma and Opa Manfred.
And then, Possum and Boo Boo proceeded to play soccer in our living room. That is actually possible - our house has been emptied of most furniture while Boo Boo learns to drive. Somewhat Zen, although it feels a bit like we're living in a warehouse...
Anyway, there was a 5 year old boy, being chased by a 2 year old girl in a powerchair, all followed by a 7 year old boy who decided he didn't want to play but had to referee the other two. And mum joined in for a little while too.
Mayhem.
Madness.
Fun.
Thank you Oma Helma and Opa Manfred.
Wednesday, 18 June 2008
Happy Girls
We have a very happy daughter
In fact, we have a very happy mother and daughter.
You see, in between the showers, our friends Andrew and Mike have been working hard.
The ramp will be useable this weekend (the railings and wires, and safety bollards in front of the stairs are still to go on) and with Mum's help, Boo Boo will be able to drive her "car" outside. And she can even choose which wheelchair to use - the little yellow mean machine (aka Permobil Koala) was delievered today for a 6 day trial period. Yipeee.
In fact, we have a very happy mother and daughter.You see, in between the showers, our friends Andrew and Mike have been working hard.
The ramp will be useable this weekend (the railings and wires, and safety bollards in front of the stairs are still to go on) and with Mum's help, Boo Boo will be able to drive her "car" outside. And she can even choose which wheelchair to use - the little yellow mean machine (aka Permobil Koala) was delievered today for a 6 day trial period. Yipeee.
Tuesday, 17 June 2008
Finals
One of the quirks of the school our kids go to is that they learn, from Kindergarten on, Sanskrit. They pray in Sanskrit first, and in Year One, the script is introduced, and they gradually learn the language. For much the same reasons, really, as people learn Latin, but Sanskrit is apparently easier. I wouldn't know, as I know neither language. But I do know the Sanskrit sounds beautiful, and Hubby's Tibetan Buddhist prayers are mainly in Sanskrit, so we feel comfortable with lots of "Ohm" prayers in this house.
On Thursday, Possum casually mentioned that Beaver was in the school's Sanskrit Recital Finals for his class. Now, at the school, that's a big deal. So I asked Beaver, who equally casually confirmed. Then I checked with his teacher. You see, Beaver only started speaking 3 years ago, so him being in the Sanskrit Finals, well, it could be true.
Sure enough, he was one of the 4 finalists from his class (one from each House).
So Hubby and I made sure we weren't going to miss this event!
Here is the photo to prove to the world that yes, it was true.
And no, the boy didn't win, He was disappointed. After all, he practiced all morning (during breakfast, in the shower, in the car) and would have dearly wanted to earn 10 points for his House
But I was not the only one who noticed he got an extra loud cheer from the whole school.
His teachers were very proud of him, and many came up to me afterwards to tell me how they'd wished he had one. One mother actually wrote him a special certificate of achievement for making it into the finals and popped it in his bag.
Do I need to mention that his mum and dad were very proud?
Monday, 9 June 2008
Rain stopped the Ramp
Now that the girl is mobile, we need to get her out.
Yesterday the boys went for a play out on the street, and Boo Boo stood there, she had driven her wheelchair to the front door, pointed, and said, "me, me".
Unfortunately, no can do. You see, we've spend a bucket load of money making this house wheelchair accessible, but a few areas of work remain. One is the front entrance.
This is what it looks like:
Yesterday the boys went for a play out on the street, and Boo Boo stood there, she had driven her wheelchair to the front door, pointed, and said, "me, me".
Unfortunately, no can do. You see, we've spend a bucket load of money making this house wheelchair accessible, but a few areas of work remain. One is the front entrance.
This is what it looks like:
The entrance consists of one 110 mm step, then a flat areas, then three steps of respectively 160, 170 and 180 mm height. Then comes a pebble-crete slope (3380 mm long) which leads to the driveway. Not very accessible, no.
So, our lovey builder Andrew has risen to the challenge, and designed a ramp that will make the whole area wheelchair accessible. It will include steps to go to the garage and laundry quickly (and provide Beaver with some more steps to keep going up and down, excellent physio!) while at the same time allowing us to get Boo Boo and her chair out of the car easily. And, most importantly, it will allow her to drive outside and join her brothers. We've even moved beyond mere plans, look at this - the concrete foundations are in, and the joists and bearers are in place. The decking has been delivered (and is currently clogging up our garage). All good.
But then came the rain....
And rain.
And more rain.
A whole week of pouring, endless rain.
And yes, the borrowed wheelchair did arrive (don't ask me how I got it in the car and then into the house!). Boo Boo loves it. So far, she has make some nice marks on the doors, and one hole in the wall. But she's getting very good at driving. I would nearly say pretty bloody good, considering she's two years and three months old, and it's less than a week ago that she had her first ever ride. I really do need to learn how to make and post some video. Promise.
So yesterday, she drove to the door, pointed at the boys playing outside, and said "me!"
Will you all please pray to the rain gods to give us a break for some days. Please?
Thursday, 5 June 2008
Girl on the Go
Boo Boo had a wonderful two days. You see, we've been trialling wheelchairs. Yesterday we tried the Quickie Zippie Z-Bop and the Pepe P17. Today we tried the Permobil Koala and K300. The first two were a back wheel drive and a mid wheel drive, while the Permobils are front wheel. Yeah, there is a whole lot of of technical stuff to consider...
It took Boo Boo about 5 minutes how to work out the joystick and drive the machine. And she had fun! It would be fair to say that the OT was amazed at the speed with which Boo Boo mastered the chair - and at both trials, it didn't take long for some other staff members from The Spastic Centre to come and have a look at this impressive little lady. She's very young to trial a chair, and despite the fact that the OT was the one who first suggested the idea, she was not expecting Boo Boo to be that confident that quickly.
All I can say is Boo Boo loved it. As she said "More K" (meaning "more car").
Thing is, seems we're incredibly lucky, and she might get more car very soon - maybe even tomorrow. Thing is, the OT has just had a pediatric Roller Rad brought in last week. She's changed the settings to fit Boo Boo, and if there is a portable ramp we can borrow to get the thing in the car, we can go and pick it up tomorrow - yes, tomorrow - and trial the chair for a few weeks. We will also be able to test-run the Koala and K300 for 5 days (or 7 days if we work around a weekend) and then get a better sense of which chair we decide to get. The OT has a slight preference for back-wheel drive, while we are with the technician and favour the new system of front wheel drive (which is a more intuitive way to drive, since the wheel is under your bottom, so you feel the control of the chair better). Anyway, time will tell, we're going to have fun trialling these wheels...
Here are some pictures of Boo Boo on the K300 and Koala. When she has her own chair, all the straps and settings will be right for her (there are some things on the chairs currently that she won't need), so no need to worry about the odd straps hanging down or the position of the footplates (which make her look like Terminator Toddler)...
Subscribe to:
Posts (Atom)