Terrible Palsy

. . . You see someone wearing a dog collar and think they look silly.

In my younger days, I would have looked at the person and perhaps thought the spiky dog collar looked somewhat cool.  I may even have considered the symbolism of the collar representing the restrictions society is placing on that person.  

But now.  Well, now I just think it looks silly.

Oh, how age has mellowed and changed me.

. . . Missing.

Sorry for not posting lately.  I’ve been reading my way through this year’s BADD.

So many great posts.  Please go and have a read.

I would be remiss, not to mention the posts from this blog’s sister blog.  Ekie and ActiveVoice wrote fantastic submissions.

Attila, like always delivers a serious message in a humorous way.

But amongst all the fantastic posts (too many to mention each and every one here), is a contribution from Lisa at Twinkle Little Star.  It was the post that made me stop and think.  Here’s a quote:-

Most disabled kids are born into a family who would not voluntarily have chosen to have a disabled child. They may have no connections with disability culture and may, in fact, have never even met another person with the child’s disability or any disability for that matter. They may harbor deep misconceptions and prejudices about people with disabilities. And they grieve the loss of the nondisabled child they expected. Although many parents do a commendable job getting schooled about disability really quickly and often have wonderous transformations in thought and even in cultural identity because of it, this may take years. And for some families, the fear and hatred of the sick and disabled never truly goes away. They may come to love their child, but never are able to love that part of them which is disabled.

Go, read more.  

Be back soon. 

May 1st is Bloggers against Day Disablism.  You will find a list of all the bloggers supporting this day here.  Thank you to the Goldfish for once again being the most gracious of hosts.

I had a moment last weekend that made my stop and think about disablism and what a big part it is in our lives.  In a perfect world, we wouldn’t experience disablism.  I’m sure you all know how far from a perfect world this is.

We went to a friend’s place for lunch.  There were a stack of kids.  And like always, we were at a house which was inaccessible, so Moo had no chance of following the group as they ran around the house.  For the most part he was content to lie in one of the bedrooms playing with another child’s batman toys.  I was in checking on Moo with Sumo in my arms.  Moo was fine and I put Sumo down so that he could see what was going on.  I had one of the kids remark to me how amazing it was that Sumo could walk already and yet Moo couldn’t.  

At one stage, the boys all went outside, so I put Moo in his electric wheelchair.  I had one of the other boys ask me how Moo could drive his electric wheelchair.  I told him because he could and he knew how to.  He insisted on asking me the same question again.  I told him to ask Moo.  When he asked me the third time, I blurted out something about Moo being very intelligent and fully capable of comprehending and responding to this same question.

This kid was 7 years old.  It bothers me that a 7 year old is already directing questions to me instead of Moo.  That at 7, he has already made assumptions that Moo has difficulty with comprehension.  Long term readers will know that he doesn’t.  But it isn’t the first time that an automatic assumption has been made by another person that his disability is more then just physical.

There were other things that bothered me.  The kids referred to Moo all day as a baby.  He’s not.  He is turning 4 years old in less then a fortnight.  Sumo is a baby.  Moo is a big boy.

And then there was the incident where Master C bopped a boy on the nose due to something he said about Moo.  Don’t know what he said.  Master C isn’t talking.

Later in the afternoon, I was talking to one of the Dad’s at the lunch.  It was the Dad of the boy who had expressed wonderment at Sumo walking before Moo.  I told him what his son had said.  He laughed it off as if children say the darnest things don’t they.  It became clear after my talk with him that he had never sat down with his son and talked about disability.

And you know, having now thought about this subject far too much, I think that as parents we need to make this a talk - a talk that we must have with our children not unlike the birds and the bees.

Hubby raises with me the issue that this Dad doesn’t know what to say or how to react to disability himself.  So how can he talk to his child about it?

Hubby has some good points at times.  

He also raised the issue that it has now taken me 4 years to learn all of these things and to now be in a position to recognize how unjust this world really is.  Is it therefore fair that I expect other people to automatically know these things, when they have no reason to notice that they are an issue.

I am probably being unfair on the world in my criticism.  But having now seen what I have seen.  Having now experienced what I have experienced, I cannot stay silent.  That is the only way that things will change.

And I thank you all for undertaking this same journey of change with me.  Together, we will make a difference.

Moo’s preschool teacher has put up a poster in the room setting out what each child has said when asked the question - Why do you love your mother?

What do you think Moo’s response was?

“Because she takes me to the bank“.

It’s nice to be loved, isn’t it?

There has been times in the past where I have been stuck by indecision.  I have wondered whether the choices I make on Moo’s behalf are the “right” ones.  Whether I am doing enough for him?  Or, whether I am doing too much for him?  Do we focus on his physical limitations instead of focusing on his cognitive strengths?  Should I be getting him a pony walking frame?  Should he be stretched more?  Should I insist he wears leg wraps at night?  

I’ve heard many times people use the phrase “Mummy knows best”.  Unfortunately, if this was true then there wouldn’t be children put into foster homes because parents can’t cope.  I know of two kids who have disabilities in our suburb who fall into this category.  And to be honest, I can cite half a dozen examples of why this saying isn’t true from the work I do and the people I meet.

Recent times has brought clarity for me on these issues.  

I finally realised that it no longer matters how Moo gets from point A to point B.  The most important point was to make sure that he could get there.  We can continue to do ABR but we shouldn’t put our lives on hold waiting for functional gains.  That the rest of the world doesn’t stop while you do therapy.  That you can’t underestimate the importance of just being a kid.  The importance of playing with your brothers and with friends.  Of being able to go outside without being carried.  The importance of independence.

Moo and I had to go to Brisbane last week for a visit to CP Health.  As it would normally have been a kindy day, Moo and I got to spend the day just him and me.  In a house full of boys, this is quite rare an experience.  And he was a delight.  So funny.  

We met with the rehab doctors and physiotherapists.  They asked me for Moo’s medical history.  The older Moo gets, the more strange I find this question.  I am hesitant to recite it.  I would prefer the doctors to read it.  

I don’t tell the doctors that we are doing ABR.  Other parents I know have been that brave only to get barely an interest from the medical practitioners.  So I don’t mention it.  I suppose the downside is that I am considered to be one of those parents that doesn’t do therapy on their child.  When the reality is exactly the opposite.  But would it really matter if I was one of those parents anyway?

The group asked me about goals and what we were trying to achieve?  About standing frames and how much time he spends in one?  About stretches and SWASH brace and leg wraps?

My response was that our goals were different to what they thought our goals should be.  I told them that the most important thing to me was that Moo was included in activities as much as possible.  That standing frames and the like get in the way of inclusion.  That his cognitive development was more important than his physical development.

There was an insistence about the use of standing frames.  I had a study recited to me on the benefits of standing frames.  

I cleared my throat.  Moo was asking me to get some toys down for him to play with.  He was over the visit to CP Health already.

“Excuse me if this isn’t right, but my understanding was that the studies say that standing frames alone do not make a difference - that it has to be active standing,” I said quietly.

And in that second, you could tell that the atmosphere in the room changed.  The opinion that these people had formed about me had changed.  I shared my strange ideas about the vibration machine (actually these ideas are really Fiona’s who was also the person who told me about the study - she is a wealth of information).  Instead of putting these ideas down, they were accepted as being of some use to Moo.  That I hadn’t just not put him in a standing frame due to some possibly perceived laziness or lack of knowledge - I had considered it before determining a different course for Moo.

They examined Moo.  We were given three options - botox or either of the two ways of taking baclofen. None of these options are presently being considered by myself or hubby.  We have hopped off the botox merry-go-round.  And baclofen may be an option in the future.  It isn’t at the moment.

At the end of the day, it was decided that CP Health has done as much as it can for us at this present stage.  We do not have any more appointments.  They are happy to leave the decisions in our hands.  It’s nice to leave the intrusion behind.  To be trusted to look after the best interests of our child.  I’m still not sure that Mummy knows best.  But Mummy is doing the best she can.

And then Moo and I went to lunch.  He was the perfect lunch date, though he did eat all my chips.  

I know it’s been a while since I’ve shared some photos - particularly of young Sumo.  He’s growing up so fast.  And I’m not sure I can call him Sumo anymore.

This photo is during peaceful times.

It never lasts.

The baby formerly known as Sumo.

Moo at swimming lessons.

So here is the long awaited video of the boys at swimming lessons.  Master C is doing his best impersonation of a drowned rat.  His teacher isn’t his regular teacher and that tends to throw Master C.  Moo was doing really well until the end where he took a gob full of water.  He ended up going blue around the lips and floppy, which is never a good sign for Moo.  So we pulled him out of the water early.  

What do you think?

I received a letter from Disability Services a couple of weeks ago saying that we had been knocked back for funding yet again.  Now just to clarify, I have asked them to fund a shower chair.  I did also ask for home assistance (if you saw the mess we live in you would understand why) but I was pretty sure I was going to get knocked back on that.  The shower chair though.  It’s not like I’m asking for a luxury item.  It’s a shower chair.  Something for him to sit in while he has a shower.  At the moment, we are still using a bumbo.  We’ve tried a couple of different cheap alternatives, but he doesn’t feel secure in them like he does the bumbo.  And it’s getting kinda smelly.

So the rejection letter came from Disability Services when I was feeling a bit ratty.  I fired off a quick response to them and cc’ed it to our local state member.  I also let the state member know that we were just about to put in a MASS application in for the power chair, which I would also cc to him so that he could keep an eye on it.

Well, the MASS application went in and . . .

. . . It was approved before I got the chance to cc it to the local member.  Approval in just over a week.  Isn’t that amazing?  

So what do I do now?  Do I cc the MASS application together with the approval letter to the local member?  Maybe, I’ll just let him know when he responds to me about Disability Services.

Hubby’s birthday was the other day.  He had decided that he wanted to go on this for his birthday.  Given that it was a touch expensive, it was the only gift he got this year from the immediate family.

Master C commented to his Daddy about how he had received only cards for his birthday and no presents.  Daddy told him that it was okay as you didn’t always get presents for your birthday.

You should have seen the look on Moo’s face.  He was not too happy with that revelation.

****

So we went on the tour today.  Gotta say.  That after we booked, it occurred to me that I wasn’t really all that keen on going.  It further occurred to me that I probably should have lined up one of hubby’s friends to go with him instead of me.  I had already been banished by hubby to a separate jet ski as he was afraid that I would complain about the speed and make him slow down.  He is probably right.  A few years ago on our honeymoon, we went on a tandem kayak to catch some waves.  He spotted the perfect wave, paddled madly for it.  Then had me, who was sitting at the back, look down at the sheer water face, panic, then dig my paddle in so we popped off the back of the wave.  He was not very happy with me.

It was a good day.  Not something that I would chose to do.  But still fun.  Hubby had a blast.  I had to go full throttle to keep up with him and the guide.

I did beach the jet ski on a sand bank.  Not my fault.  We were told to follow in a line, about 100 metres apart and trace the person ahead of us wash.  Thats fine except the guys were starting to leave me behind, so I was about 200 metres behind.  The guy in front of me, swerved out of the channel to go around a boat.  By the time I got to that point, the wash was getting hard to see and had moved.   One minute I’m thinking, there’s the marker and the wash is going in the other direction . . . hang on a sec . . . I can see the sand . . . sh*t, I’m on a sand bank . . . kill the power (jet skis don’t like sand in their motors) . . .clunk, I’m beached.

Some nice people came over in their boat to see if I was okay.  I was fine.  I told them that the boys would notice I was missing eventually.  Sure enough, they did.   Eventually.

The guide noticed my hesitation to go wave jumping in the open ocean.  I don’t have a death wish.  So taking matters into his own hands, directed us out into the ocean where it was too choppy so we had to come along behind the shore break into the channel.  As I was the last one in the line, I was lucky enough for a wave set to come in.  Realising that it was going to break before I safely went over the top of the wave, I tried to outrun it, only to realise that it was going to dump on me no matter how fast I went.  So I faced into and jumped the wave.  Got sopping wet but at least can say, yes I did go wave jumping - even if it was by default.

Saw a mother dolphin and her baby in the seaway.  Watched the other participant on the tour (not hubby) go over his handlebars.  Went flat out and screamed the whole time - lucky nobody could hear me.

It was fun.  But I don’t know hubby - I’m not sure that I really want to get one of our own.  Fun in the way of, nice thing to do for something different every few years or so.

Hubby and I then had a relaxing lunch on our own.  It’s amazing how slowly you eat when you don’t have the kids with you.  It took us 2 1/2 hours to eat lunch.  That’s unheard of.

Our poor babysitter was a bit relieved to see us arrive home.  Master C had gone feral on her.  I hope he hasn’t scared her off completely.

Good news.  Bad news.

I’ll tell you the bad news first.  

I forgot my camera when we went to swimming lessons this morning.  I know.  Really, really sorry.

Good news is, I had my mobile on me so I took some footage with that.  Picture quality is poor.  But if you are still on dial up, you shouldn’t  have any problems viewing.

The latest Disability Blog Carnival is up.  Jodi at Reimer Reason has put together a fantastic compilation based on the theme -  The Hardest Part.  Check it out.