When you end up in Disability land like I have because you got dealt the cr@ppy hand . . .

. . . Well to be honest – the services that you thought were there cause the government let’s you believe they are – really aren’t.

You will be on your own.

No, you can’t save your money for those “little” extras cause 1/ you can’t work as you have a kid with SN needs; and 2/ they aren’t “little” extras-they are a full-time wage.

Sorry to be the bearer of bad news. Just thought you should know the truth.

Love,
jacqui. xxxooo

I was eating dinner last night.  Moo was in a beanbag and Master C was on the floor.  They were playing with their lego.

When I walked past, Moo was lying down in the beanbag.

I said something to hubby and noticed that Moo was sitting up in his beanbag instead.  I asked hubby if he had helped Moo sit up and he said no.

Moo, of course, didn’t want to do a repeat performance so Master C had to talk him into it.

It was better the first time but I’m not complaining.

At least he is still moving forward with what he can do.

So, I’m going to start this post with the story I left off the last one.

One of Moo’s favourite things to do is to look up star wars lego on ebay.  He found an unopened box which had mustafar annikin and obi wan kenobi.  I’m sure that this means something to some of you and absolutely nothing to others.  For those who nothing, it is the bad annikin from Episode 3 and is a very rare set.  We put in a bid on it.

Master C ended up with my computer after that as he wanted to look at different lego available.

About half an hour later, I came into my bedroom to check on my bid and found that there was two items that I was bidding on.  The mustafar set and another set of 13kg worth of harry potter and star wars lego.  On the 13kg of lego, I was the leading bid at $500.

OMG.

Big panic.

You guessed it, Master C had decided that he really liked that lego and made a bid using my ebay account.  He had put in a maximum bid of $600.

The story ends well in that the bid was withdrawn but a long chat was held with Master C as to how he can never use my computer to bid and how much money $500 is.  Thanks K for you help there.

Back to the sadness.

Have you seen this newspaper article?  The video they are talking about it able to be viewed here on the story of “Bring our troops home” but it is right at the end of the footage.  Amongst other things, she drops the “R” word as if it’s totally acceptable.  What’s she advocating for is segregation.  That is wrong.  Everyone accepts that more funding should be given to classrooms.  But what she is suggesting is just completely unacceptable and it makes me sad to see the comments from people who agree with her.

If you’re on facebook, there is a page to give your support.  I’m almost considering joining facebook again just to join this group.  Almost.  I have written to Sunrise and told them that I am never watching their show again.  I actually don’t mind Lisa Wilkinson anyway

I’ve learnt a couple of things this week.

For my Grandmother – Moo is fine.  I could use more sleep.  But I think you already knew that as you read this blog

So, I’ve learnt that dogs are as bad as children.  Sometimes downright naughty.  The positive being that our dog Shadow, now has her very own shadow.  Amy treats Shadow as if she is her mum.  And I don’t think that is a bad thing for either one of them.  Our cat Zeus wasn’t initially keen on the idea of a puppy.  When he first saw Amy, he gave me a look that said “you are kidding me, aren’t you?”  Now he has this puppy run up to him, wagging her tail furiously, licking his face all over.  He hisses.  He swipes.  But even when he swipes, his claws are in instead of out.  It’s amazing.  So, in response, Amy just gives him a bigger lick.  And he just sits there and takes it.

Scrappy has days where he and Amy are best friends, the next day he is climbing up on the couch trying to get away from her.  This arvo, they were best friends.  I found him feeding Amy from the storage container full of dog food.  One for her.  One for him.  He seemed surprised when I suggested to him that he shouldn’t eat dog food.  Sigh.  I suppose I shouldn’t complain cause at least he is willing to feed the dogs.

Ad rang me while I was in hospital with Moo.  He was home alone and wanted to know if anyone had tabs on the cornchips and dip in the cupboard.  When I told him that I had roma chicken in the fridge for him for dinner, he asked me whether it was raw or cooked.  I told him that it was raw and that he just had to put it in the oven for 15 minutes.  He decided to have cornchips instead.  Sigh.

I also learnt that I need to ask more questions before Moo has surgery.  Questions like:-

- Will Moo be able to shower afterwards?

- Will he be able to sit up/sit in his wheelchair before he leaves hospital?

- If so, are you saying that with or without physiotherapy?

- When do you think he will be able to go back to school?

- Where is the cannula going to go?

- How long is surgery going to take?

Moo was having what is classified as a minor orthopaedic surgery.  This means it lasts under an hour.  I was climbing walls by the time that we got to over 3 hours without the call saying that he was in recovery.  I found out afterwards that Moo took his time in waking up.  Not what I was expecting.

The first thing Moo said to me when he woke was . . .

. . . What’s wrong with my arm?

Turns out that the cannula was put in his right arm – his good arm – and he couldn’t do anything with it.  When you have three bad limbs and one good one, this is a bit of a problem.  He cried more about not being able to use his arm then he did about his legs.

A positive was that we stayed on the day surgery ward which as it turns out is a 23 hour ward.  I didn’t know that there was such a thing.  In the surgery ward, you ring the bell for assistance and someone shows up half an hour later.  In the day ward, I had nurses asking me continuously if there was anything they could help with.  It was lovely.  And amazing.  And I didn’t need to ring the bell cause what I needed to have happen, had already happened.  Thank you beautiful people

I’m not going to get mother of the year award.  Moo was in a lot of pain all night in hospital following surgery.  You know how he is sometimes hard to understand?  Well, there was no misunderstanding on that night.  All night, he called out for his Daddy.  Even the nurse repeated back to him “I’m sorry beautiful but Daddy isn’t here, only Mummy“.  Sigh.

When our 23 hours were up and it was time to go, I realised we had a bit of a problem.   I went to lift Moo out of his bed into his power-chair and he screamed.  Literally.  The lovely nurses called the PT.  The PT responsible for Moo, who I believe is older than she looks, has a fantastic sense of humour.  She comes, sees the problem, identifies a solution and then leaves whilst we wait for the muscle relaxant to take effect.  Half an hour later she comes back to Moo who tells her in no uncertain term to go away and that “I’ve told you already that I can’t get in my powerchair“.

She did eventually get him in the powerchair, despite his protest and without telling him, “I told you so“.

The good news for Moo is that he is shower free for the next two weeks.  I kinda wish that I had have realised that before surgery as he is in a bad need of proper hair washing and a hair cut.  School hopefully can be achieved this week, though not as I thought it.  If he can’t sit in his chair, I don’t think sending him to school is a good idea.  Two hours is his limit at the moment.  Not to mention, manual handling is a bit of a nightmare as well.  Moo has sensed he may get some more time off school.  He is already asking me what is happening during the week.  Give Moo an inch and he will take you a mile.

And for the only child not already mentioned – Master C is going well.  During all the excitement of surgery, he and the fabulous Miss A were in a car accident on Thursday.  I wasn’t told until well after the fact.  Which is probably a good thing.  I was climbing the walls after 3 hours of Moo being in surgery/recovery, can you imagine what I would have been like if I had have been told Master C had just been in an accident?

It was mainly property damage.  Later that night, I received an email from Master C.  It attached a picture below.

Dear Mummy

As horrible as this sounds, the email makes me feel so proud.  Although he hasn’t spelt accident right, what a good attempt for a Grade two-er.

And in case you are wondering, that is a drawing of the cars down at the bottom.

And then last night, I got this email.  It says it all.

I love you all

So it wasn’t until this afternoon that I opened up the computer and this photo is what greeted me.

Number 4

I guess that means that someone had been using it and photobooth last night.

Also, a few photos back, was footage of Master C showing his best karate moves, before talking about how his parents were dead and then picking his nose.  It was hilarious to watch but I’m not allowed to post it because it is “private” according to Master C.

Amy Pond has turned escape artist.  Miss A reckons it’s like the amount of children in her care has doubled.  The joys of having a puppy.

Moo’s powerchair is on the blinkers.  The joys of waiting for someone to come out and fix it up.  Sometimes, it’s quite painful in not having an adequate back up chair.  But we do get to check out the sleep systems next week so fingers crossed that at least one looks okay.

And two weeks until Moo gets his plates out of his legs.  Let’s hope his lose tooth decides to come out before then.

1.  Its really hard to keep a white puppy dog clean.  Don’t laugh.  But it is.  Especially in wet, muddy weather.  Lucky Amy Pond doesn’t mind baths.  Now if only I could stop her from drinking the bath water . . .

2.  Moo really loves school holidays.

3.  Those lines around my eyes and on my forehead are WRINKLES because I AM GETTING OLD.

4.  I really don’t like it when people I know who are over 40 look fit and fabulous.  That includes my hubby

5.  Sometimes separate foot plates on wheelchairs are just dangerous.  Next chair has to have only one (joint) footplate.  Manufacturers take note.

6.  That I am forever indebted to youtube to support my overdeveloped Doctor Who addiction.   And fez’ are cool.

7.  Some people call “cut outs” cross overs.  Why?

8.  When someone says that they want to restore your faith in humanity, they don’t really mean it.  They just don’t know how to tell you that they aren’t paying your bill.

10.  When Scrappy says that he will sit still during a movie and that he lo-o-o-ves popcorn, he really means that he really loves popcorn but that he can only sit still for the adverts before the movie starts.

What have you learnt this week?

A post about my eldest son turning 18, should probably revolve around him.  About how, when he was born 18 years ago, my sister told me that I had a boy.  Of course, I had to look cause if anyone was going to mix up the umbilical cord and the penis, it was going to be my sister.

The biggest joke of all is that he is now the oldest of four boys.

Thinking back, I don’t think that any of the younger kids have bettered the toddler tantrums that Ad was so good at.  He had this thing where he could chuck himself on the ground and scream his head off.   One day, soon after hubby came into our lives, we were out at a farmers market when Ad decided to chuck a tantrum.  He threw himself down on the ground.  Only the ground was mud from recent rain.  And he landed in the middle of a puddle.  I think Ad was as shocked as we were.  Hubby yelled at him for being so silly.  And that was the last tantrum from him.

In grade two, his teacher discovered that Ad was having difficulty reading.  She organised funding to get a one on one aide for an hour each week for Ad.  All I had to do was sign the forms.  Ad went into it not being able to read at all.  At some point, Ad was told that if he could read, then he would be able to work out what was going on in his computer games without asking us.  That was all the incentive he needed.  By week 8, he had the reading level of a late primary schooler.

He has been a good student.  A great son.  And I can’t ever remember him being truly in trouble.

And now he is 18 years old.

So instead of telling you about how wonderful my son is, I’m going to tell you about how I can’t have an 18 year old son – I’m too young!  What happened to all those years?  Is that a gray hair I see in the mirror?  It’s all over.  Life is only downhill from here.

* * *

Introducing . . .

Amy Pond

The latest addition to our family.

If I had something to give away, I would give it to the person who knows where the name comes from.

Only I don’t have anything to give away

I love that my Grandmother reads my blog.  I love that she sends me emails.  And I’m sorry for going quiet for so long.

We had the move.  The loss of internet.  The interruption of real life.

And then nothing to say.

In the first few years, my emotions were so raw.  That rawness in a way makes it easier to write.

Nowadays, you get news that the medical professionals want to stick a pump in your child’s stomach cavity so that it can send a direct doseage of baclofen to his spinal cord and it’s like . . .

OK.

I don’t know how I got here.

I was told multi-level surgery is on the horizon.  I guess the lesson is that one surgery is never the end.  I don’t know why I thought it would stop at one.

And out of those two announcements, I thought I had coped alright until I was told that Moo will probably never be capable of transfers.

It’s not even as if I expect him to stand.  I don’t.  I just want him to be able to take some weight or assist with moving his legs so that transfers aren’t done completely by my back.  I didn’t think that I was aiming too high.  I hadn’t set what I thought was an unrealistic goal.  I thought that I had proven myself not to be one of those parents that think my child will do the impossible.  And yet, I was being told that transfer assistance by Moo was unlikely.

Take another piece of my heart.

Today, I received a call from disability services which was a check up on our equipment application (lodged yearly for the last 5 plus years) and whether we still needed the requested equipment.  The equipment that I had nominated was a standing frame and shower chair.  Did we still require that equipment?

Well, the answer was no for the standing frame.  I explained how while we had waited for funding, Moo had lost the ability to stand.

The response was “how sad”.

Yes, it is sad.  But when I told a friend of mine about the conversation, she asked me whether having the standing frame would have made a difference.  After thinking about it, I don’t think so.

We didn’t wake up one morning and he couldn’t stand.  It happened over a period of time.  He can’t stand now because his legs don’t straighten.  He couldn’t stand before surgery cause his legs scissored.  And the scissor was a gradual process over a couple of years.  And I don’t think with the benefit of hindsight that much would have changed with the standing frame.  It may have slowed the process.  But it still would have happened.

The boys are settling into the new house.  Moo doesn’t like it as much.  May have something to do with it being so much smaller than the other house.  But he does love the size of the back yard.  Now if only I could stop our dog from doing her business out there.  Moo gets most upset by anything getting on his chair wheels.  It’s as if he had stepped in it.  He won’t move until I clean it off.  I guess I’m just lucky.

Moo announced the other night that he doesn’t like school.  Nothing unusual there.  But then he decided that he was going to send an email to his teacher saying, “Dear teacher.  Thank you for teaching me but I don’t like school and I won’t be coming back.  I will miss you.  Love, Moo”.

After more thought, he decided that the message may be better delivered by sending an Ooh and Aah email postcard decorated with “I will miss you” and the same message.

Problem is that in talking about this and spending time with Moo on the computer, Moo accidentally let the cat out of the bag.  I asked him what the computer screen message said and he read it perfectly.  I asked him how he knew that and he looked at me as if oops.  There goes that “I can’t read” argument.

I’m told that Moo has developed his cheekiness and isn’t afraid to express it at school.  His latest thing is to go screaming up to people in his chair and pull up at the last moment as they panic and go to jump out of the way.  He thinks it’s hilarious.  Others probably not so much.

So whilst living with Moo is no longer “raw”, it is fun.  I am lucky.  And I am proud.

Things could certainly be a lot worse.

Moo had a great birthday.  And a great birthday party.  20 odd 5/6 year olds attended.  It was a bit noisy but  I survived.  I even over catered.  And Moo couldn’t believe how many presents he got.

He has had a rehabilitation review this week which I may talk about another time.  My head is still spinning.  I’m also devastated as nothing has turned out like I expected.  But don’t worry, he is still my beautiful boy.  He hasn’t changed, only what I am told to expect in the future.

We finished minor renovations on the new house so that we can move in over this weekend.  It means that we are without internet until Tuesday.  I haven’t told the boys yet.  Just wait until they also find out that we are without cable tv for the same period.  You will be able to hear them screaming at your house.

I’m also excited because I am attending the inclusive learning conference on Thursday.  I thought I wasn’t going to be able to go because of the big move and also work.  But hubby has offered to cover me at work on Thursday so that I can see the talk on Proloquo2go.  I hope that I get into it as I’m sure it’s going to be very popular.  I’m also thankful to A Brighter Future for helping me out financially so that I can attend.

So until I get internet again . . .

Moo - a first look

Six years ago tomorrow, my tiniest boy entered this world with a flash of red and no sound to make.  He was whisked away from us to be revived, having been born 13 weeks too early and from a pregnancy where he wasn’t expected to make it through the first trimester, let alone (almost) make it to the third.

After the longest 10 minutes of my life, he was brought back to us.  Wrapped up.  Small.  Fragile.  But alive.  A quick hello and welcome to the world before being taken to the NICU.  I think the only words I could say to him at the time was “I’m sorry” over and over again.

We thought the pregnancy had been a roller coaster.  And yet, we had only just hopped on for the ride of our lives.  I’m not sure whether we have hopped off yet

Kara Melissa did a beautiful post recently for Sebastian’s birthday.  She talks about the photo that she was given by the nurses when all the women in the ward around her had their babies with them.

I remember my photo of Moo that was given to me as I passed through NICU on the way back to the ward on my hospital bed.  I was still bed bound from the c-sect and not allowed to move.  I remember hugging the photo all night, as I drifted in and out of sleep.  And ringing the NICU every half an hour to see if there was any change.  That first photo is the photo above.  It’s a bit worse for wear now.

Over the last six years, Moo has developed into a child that I am incredibly proud to call my son.  He is everything that I wish he would be.  Brave.  Strong.  Maybe a little too stubborn.  And incredibly funny.

While the other boys have certainly grown into Daddy’s shadows, Moo remains mine.  Loyal.  Protective.  With a quick wit and a fierce tongue.

I love you Moo.

I hope you have the best birthday.

Marshall