Terrible Palsy

So . . .

April 7, 2009 at 10:09 pm | In 1 | 1 Comment

Leonid has a blog. It’s not a perfect blog. But it’s his blog and I’m sure he’ll learn how to use it more and more each day.

So . . . stop by, have a visit. Leave him a message. And ask him a question or two. He is long winded. But at least he knows that already

IceCream

April 6, 2009 at 8:24 pm | In Bits & Pieces | 2 Comments

So, my kid got a Deputy Principal award at school. That is, despite running over the Principal’s foot with his powerchair.

He had a grin from ear to ear. I asked Moo what he got it for? He wouldn’t answer me. Apparently, that’s not the important part.

The important part is that he got an ice-cream.

And he kept on telling me so.

Doesn’t this draw you back to thinking about whats really important in life?

Not what we achieve or how we achieve it. Or losing focus over what is going on at work. Or at therapy.

Not what he does or what he doesn’t do.

Nope, the most important thing is the ice-cream.

I know. Cause Moo told me so.

The Struggle for Care

April 6, 2009 at 7:11 am | In 1 | 2 Comments

Please read Sue Corrigan’s article.

Don’t mess with the SN Mum

March 22, 2009 at 9:06 am | In Bits & Pieces | 6 Comments

Hubby and I were out shopping without our children.

We were wandering through Target when we noticed a little boy with an extra chromosome on his own. He was around 8 or 9 years old. He would walk 5 or so metres, say “Mummy?” and then continue on walking. We tried hard to identify his Mum in the crowd. Not being able to do so, we followed him around the store until either the message came over the loudspeaker or he found his Mum.

After about 10 minutes, and a complete circle of the store, he found his Mum and she started trying shoes on him. Hubby and I left to look at Wii games which was about 10 metres away from where we left the boy.

It was the extremely loud voice that first caught our attention. Then, it was what she was saying.

“How dare you,” the woman’s voice said. ”Here I am shopping with my two special needs children and you take my purse. Do you have no morals?”

Hubby and I moved to find out what was going on. It seems around 20 other people did too. And to that end, we saw the Mum had bailed up a woman in an isle and was going off her head at her. Hubby moved to being on the other side of the woman so she couldn’t choose to leave.

Turns out that the female opportunistic thief had taken the Mum’s purse out of her bag while she was trying the shoes on her son. Having an inkling that something wasn’t right, the Mum looked up to see the thief take off with her bright orange purse. A quick check of her handbag showed it missing and she took off after her catching her within a very short distance and snatching it back off her.

Staff eventually turned up and called the police. The thief looked very shocked, not only by being caught out but by the dressing down she had received in front of a large crowd.

The Mum was amazing. I don’t know if I could have caused the ruckus that she did. But it worked.

Oops

March 19, 2009 at 8:39 pm | In Bits & Pieces, My kids were sent here to embarrass me! | 9 Comments

Guess whose toes Moo ran over this morning in his power chair?

I might add that I recently found out that his power chair weighs 95 kilograms.

Not Moo’s fault. This person walked straight in front of him.

We found out recently by accident that Moo has been excluded at school from sports. It seems that when the other kids do “sports”, Moo either goes to the library or to the sand pit with an aide.

It’s strange to think that there is apparently no sports that can be adapted for Moo to participate. Even worse considering that he attends a physically impairment coded school – we aren’t re-inventing the wheel here. These are issues that should have been addressed many times in the past.

Even stranger is that every Tuesday, Master C plays after school sports, namely AusKick. I hate Aussie Rules but to be honest, this has been really good for Master C. The coaches are wonderful.

Every Tuesday, Moo lines up with every other little brother/sister and participates in AusKick too. They include him. He loves it. So much so, that next time, I’m going to enrol him and pay the fee. Maybe there are things that he can’t do. At that time, he sits on the sideline, watches and replenishes his fluids. But for the most part, he is an active and eager participant.

I’m not sure why the same thing can’t happen for school sports.

Anyway, I’m sure that you guessed whose toes he ran over this morning.

That’s right. The principal’s.

Just at the right time too. When I am requesting a meeting to discuss the sports issue and another issue that recently arose.

At least the principal will know who I’m talking about.

Hubby & Moo

Don’t go mad

March 11, 2009 at 7:12 am | In My kids were sent here to embarrass me!, Parenting skills (or lack thereof) | 7 Comments

Monday night is “Top Gear” night. Which translates into “not allowed to disturb hubby while this highly important motoring show is on”.

I, in turn, was on the computer writing my last post.

I had heard Master C trying to tell his father something and being turned away due to the importance of the night.

Master C then came into me.

“Mummy,” he started, “if I tell you something, promise you won’t go mad on me.”

I sighed. He only says this if he thinks I will go mad on him. And he is usually right.

“I won’t go mad on you,” I said.

Master C showed his toothless grin. ”Sumo was filling up a saucepan in the sink in the bathroom and he forgot to turn the tap off.”

Master C had barely finished those words before I was out of the office and running down the hall to the bathroom. Chasing after me, Master C told me that it was okay because he had eventually turned the tap off after the bathroom had flooded.

And sure enough, he was right. The bathroom was flooded. There was about 2cm of water everywhere. And Sumo was in the middle of the room with a broom sweeping the water around.

Sumo turned to me with those crystal blue eyes and said, “Look Mummy. Water!”

I yelled to hubby to assist me but apparently even flooding the bathroom doesn’t constitute enough of an emergency to leave the TV.

Would you believe that the house we are living in doesn’t have a drain in the bathroom floor?

I managed to mop all the water up by myself. I sent the helper and his broom off to his room.

The next day, Miss A was putting the boys in their bath. She opened one of the draws to get out a brush. The draw she opened was full of water. She checked the other two draws and sure enough, they were too.

I don’t know what we are going to do about that kid.

Amused – A round up of the blogesphere

March 9, 2009 at 8:23 pm | In Bits & Pieces, Parenting skills (or lack thereof) | 9 Comments

Are you reading N0thingbuteverything? You should be. It’s one of my favourites.

Thanks Dianne for this link to a news story that I missed.

This is the funniest thing I read all week.

Save for F My Life - which seems to have been written by a whole heap of soul mates of mine. Thanks to Attila for the introduction to the fmylife.com blog.

Nothing much to report around here. Boys are all going well. I’ve got a new haircut. And guess who has lost his front two teeth?

Guess who has lost his two front teeth

Am I the only parent who gets caught out by the tooth fairy?

Master C walked out of his bedroom the morning after depositing two teeth into a glass for money exchange. First thing he did was walk towards the glass in the kitchen wondering out loud how much money the tooth fairy had left him?

My heart sank as I realised what I had forgotten to do when I woke up. Quick divert and I had Master C helping me feed the fish out off the pontoon. Meaning that as soon as Master C decided to head back to the house, I had to beat him to it, make the exchange and pretend that nothing had happened.

Only . . .

. . . The moment Master C chose to abandon the fish feeding was the exact moment I had Moo in my arms and nowhere to put him. So Moo and I did the sprint up to the house. I put Moo on the floor, ran to my purse and grabbed $4, took the teeth out, put them in my pocket, put the coins back in the glass and ran back to Moo to pick him up. Just as Master C entered the house and decided to check the glass.

“Wow!” Master C exclaimed. “The tooth fairy left me $4!”

“Really?” came my response.

And the whole time Moo watched me as if he was deciding whether to burst the bubble. Yep, I’m pretty sure that he saw everything.

He hasn’t said anything.

I think he is waiting for the right moment.

Celebrating life

February 26, 2009 at 1:29 pm | In Bits & Pieces | 3 Comments

Sad news in the papers this week. From Simone I found out that Irish Novelist Christopher Nolan has passed away. His obituary can be found here.

A couple of days later, the British Opposition leader, David Cameron, also lost his son. I can’t even begin to comprehend the devastation he and his family must be feeling.

But to bring me right back to earth with a loud crash, came the story of Glen McDonnell who was refused entry to his flight home because he couldn’t walk. When is the Australian government going to do something about this type of discrimination? If I did fly, I certainly wouldn’t be flying with Jetstar.

Ordinary

February 20, 2009 at 9:19 pm | In Parenting skills (or lack thereof) | 7 Comments

I used to be quite vocal in my criticism of my hubby and his work. That is, until I experienced his work first hand.

Take today for example. We had four matters before the court. Then we had another four matters where we appeared as friends of the court.

There is a fancy latin name for appearing as friends of the court. I heard another practitioner whisper it today. It made me think – that’s right – that’s the correct term. I remember studying the term at university. The reality is that “friend of the court” means that we are appearing because we know that if we don’t help this person out then we won’t be able to sleep tonight.

I appeared as friend of the court at 11am for a person with serious mental health problems. Hubby appeared at 12 pm for two more. Then at 2pm, we couldn’t sit by as another person, so obviously prone to his organic brain injury, got done over by the court system and an aggressive lawyer. Ironically, the best outcome that could have ever have occurred happened for him today. There was more at play then just our trivial interference.

Ironically, during the chaos which is our work days, I listened to a message on my phone from Moo’s school telling me that the powerchair was broken. Within the hour, I walked the half a kilometer from the court to the school to see what was going on. Selfishly because it takes around 4 days for the powerchair to be serviced if it really is broken. So I need to make the phone call to the service provider at the earliest convenience to avoid the inconvenience of additional manual chair days. Selfish because I don’t like manual chair days.

It was a hot day. I was really sweating by the time I got to the school. When I arrived, the best I could do was point at the powerchair and grunt. Thankfully, the teacher interpreted that as me being there to fix the chair.

Moo, as I found out later, had turned his chair onto the slowest setting. The teacher, not knowing any better, thought that the chair was broken. It was going incredibly slow. Slow because the setting is the slowest that the chair can go. A fact that was reinforced by Moo when he announced to his teacher that his chair was indeed broken and that he had to go home.

Upon seeing me turn up at school, you could see Moo’s brain ticking away as he realised that his plan had worked. His mum was here to take him home. His plan then was foiled when I turned the speed setting up to level 2 and 3 and . . . you guessed it . . . the chair worked fine. He then grabbed at my hand in a grasp that said you couldn’t possibly leave me here.

It never ceases to amaze me how smart my boy is. Unfortunately for him, I spent the good part of ten minutes telling his teacher and aide how to fix his chair.

I left school to him screaming. Fortunately, I know he didn’t scream for long. I know cause I sat down out of sight and waited until his cries settled. Until the last sob had turned to a smile.

After all. I am his mum.

Nobody loves him more then I do.

And between you and me . . . I couldn’t be more proud.

Today reinforced to me that my boy was not a follower. He takes risks. Risks that may not always turn out the way he wants. But nevertheless, he is my cheeky manipulative child. My oh so beautiful child.

How lucky am I?

Plus and minus

February 17, 2009 at 7:42 pm | In ABR | 17 Comments

Hubby and I have just finished our last ABR session. That is right. I did say that it is our last session. We have run out of money. We have exhausted all of our savings and with necessities like equipment taking what little is left, we made our last satellite trip to Darling Harbour to meet Leonid Blyum.

The trip has been full of frustrations. Money frustrations. Access frustrations. Many service frustrations. Hubby and I have never quite got used to the limitations placed on us by Moo’s disability. Not at all Moo’s fault but my gosh Australia – we are supposed to be a modern society. How about installing some ramps, some lifts that work and getting some empathy and compassion.

Enough of the moaning. I know a lot of people find this web-site in their research of ABR. I do get a lot of emails and messages about the therapy. I’m sorry for not providing quick responses. My life is exhausting. I will email you soon I promise. In the meantime I thought I would detail the pluses and minuses for the therapy.

Plus

It works. No miracles but clear changes in your child. ABR won’t cure your child nor is the progress quick. But your child will improve over time.
ABR puts the caregivers back in the drivers seat. You are not reliant on therapists or doctors to improve your child’s life. You can also adapt this therapy to your lifestyle.
Meeting other inspiring families. I really have met some great people who I now classify as friends through ABR.
Leonid is amazing. Though I will write more about the assessment after I rewatch the video, Leonid did live up to all the hype. At one stage I felt like telling him that he was preaching to the converted and he asked Hubby and I to start asking questions cause we were too quiet. And yes, Leonid, I do know that you are probably reading this.

Minus

ABR is expensive. Very, very expensive. I don’t know about the rest of the world but Australia is heading towards a recession. ABR isn’t very affordable in todays economic climate. It is more than the therapy – it’s the travel, accomodation, shared expenses and time away from work.
It is hard work. It isn’t the easy option. You spend long hours undertaking the therapy when you would rather be in bed or doing something else.
ABR is not consistent with some other therapies. Like conductive ed, anything that involves stretching or patterning, Botox and surgery. If you are like me you may think this belongs under the plus heading. It is here because I know that many people believe in these other therapies. I raise this only so that if you are considering adding ABR to these other therapies then there is little point. There are exceptions to this rule but the exceptions don’t apply to Moo so I won’t be going into them.
I believe that the way ABR is being delivered is going to change. Unfortunately it needs to. I hope that one day it will be a lot more Internet based cutting down on the need to travel and sit through training sessions. My pet hate with training session is the waste of time. Moo will not tolerate ABR while he is awake. I have a very short window to practise on him. And the trainers always seem to be very busy with the other vocal family. We tend to just figure it out when we get home.

Where to from here? I will let you know in the coming months. For the meantime we will keep on with our poor manual hours and strive to accomplish the two thousand machine hours on his hips that we need to in order to get the required volume.

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