Archive | January, 2011

sensitive little sailor

29 Jan

S is such a sensitive soul.

Tonight we watched the final part of a doco about sailors with disabilities doing the Sydney-Hobart yacht race. It was called ‘DisAble Bodied Sailors’ He was so involved watching it and kept asking ‘will they win’?

We hadn’t seen the previous 3 episodes, but will definitely take the time to watch all the episodes online here. If you get the chance to watch it, do. It was beautiful TV – one of those ‘you can do anything you want to’ kind of programs that I hope will inspire and empower S to know that there are no boundaries to what he can achieve.

I’ve also promised him I will look into him having a go at sailing some time soon. He’s super keen. I have done a bit of googling and it looks hopeful that I’ll be able to keep that promise.

After the doco (on SBS), the news came on and S was riveted to news of the troubles in Egypt. We talked in very simple terms about what was happening and why. We talked about how lucky it was that his friend Seb doesn’t live there anymore. And also how lucky we are to live in the place where we live.

When it was time for bed, we read a couple of chapters of his book. I am reliving my childhood and we’re reading ‘The Magic Faraway Tree’ – both he and Maliki are enjoying it a lot.

After we’d finished, S asked me again about Egypt. He said he was worried about the people there. And worried he might have bad dreams about them.

Bless him. He’s so sensitive and such a worrier like his mum. I want him to want to know what’s going on the world, and to care about people and understand that there are places where bad things happen.

But I don’t think either of us are really ready for him to know just how sad and bad the world can be at times.

So for now, I will turn off the TV before the news starts. And instead we’ll immerse ourselves in the Enchanted Wood with its fairies and elves and the Faraway Tree which you can climb to reach the highest heights and believe that magic of all kinds really is possible.

School Funding – woohoo!!!

19 Jan

Late last year, we were informed that S had been allocated an inadequate level of funding for school.

We didn’t take this news lying down.

Thanks to the wonderful, incredible, fabulous team of therapists and staff at CPEC, we applied for a ‘reappraisal’ of the funding allocation.

In order to have our reappraisal considered, we had to provide additional information to support our case. S’s therapists provided pages upon pages of evidence to support his need for a higher level of support. His paediatrician wrote a detailed letter for us. The school wrote a letter of support for us. And I wrote my own long letter too.

It took a lot of people a lot of time to put together all the information. We are so lucky to have such a wonderful support around us. And we are forever grateful.

We found out at the last minute that the application for the reappraisal had to be submitted on the last day of term last year, and it came right down to the wire, with me driving the application across a few suburbs to get a missing signature, getting S’s paediatrician to fax her letter across to the school with only 2 hours notice and the Assistant principal from S’s new school compiling everything and getting it in the mail whilst also busily finishing up business for the end of the school year.

I could criticise the Department of Education for the fact that we didn’t get the funding allocation we should have got first time around, but I am not going to. The fact that they were willing to look again at their decision and consider further evidence means that I am not going to criticise. In fact, I would very much like to praise our contact person at the Eastern Region Office. She wasn’t the one who gets to make the decisions. But she was very, very supportive and helpful and who never once blundered into the land of bureaucrat gabble. Instead, she gave us clear and well informed information, explained to us how the decision was reached and how we could have it reconsidered. She always returned my calls when she said she would and kept me up to date with developments – including letting me know today that a decision was being reached – as soon as she knew.

It’s amazing the difference it makes when this level of support is provided.

So nope, we’re not complaining. We’re celebrating.

And we’re hoping that in light of the decision that was made in our favour a little more thought might go into funding allocations considering the degrees of complexity in disabilities. Most children don’t neatly fit into the set criteria that they have.

What we learnt is to provide AS MUCH detail as humanly possible. And I think it was an error on my part that I didn’t provide a detailed letter of my own in the original application.

Yes, it was a pain having jump through so many hoops and it’s been stressful wondering and waiting was going to happen, but yippee to the right decision being made AND to it being made before school begins!

We have also recently had funding joy with some other pieces of equipment we’ve been waiting on – a manual wheelchair, a new pair of Piedro boots, a Pointit Joystick and compact keyboard with guard and a new Second Skin body suit.AND thanks to the wonderfully supportive CPSN, we also got a grant to cover 2 terms of horse-riding for S with RDA. Thank-you!!!!

And for the things that we’re still not funded for, we’ve just put in an application to Consumer Affairs to register us a fundraiser. Thanks go to the wonderful Kate (Meg’s super mum) who has helped give us some advice on that front.

Still can’t believe that school will be starting in a few short weeks!!! But feeling like we’re a lot more ready now. :-).

Happy Birthday Baby A!!

17 Jan

I can’t believe that my gorgeous Baby A turned 1 yesterday. He is such a delight. A beautiful little piece of perfection to complete our family. Feel so blessed to have my three wonderful boys.

On Saturday we went to Pop’s house in the country for the ‘first’ of baby A’s birthday celebration. We had a lovely day out.

Then we had a quiet day at home for his actual birthday – S was very excited about setting up a party just for the family for his baby brother. He set the table, put up decorations, made a pass the parcel, helped make the cake – and even survived the long wait when baby A fell asleep right when the party was scheduled to begin.

It was a lovely sunny day. Perfect for staying home and enjoying baby A’s special day.

And today we celebrated Baby A’s birthday by going to the zoo.

We loved seeing the orangutans – except they weren’t being very active and it just wasn’t the same after seeing them in the REAL jungle just a few months ago. We spent more time on the other side of the same enclosure watching the Siamang gibbons. They are beautiful black apes, also native to Sumatra, who are graceful to watch move and if you’re ever lucky enough to hear them ‘sing’ to each other it’s an amazing thing. If you’re curious to see more about them, watch this video:

The boys enjoyed watching the gibbons for ages. S was however disappointed that while the orangutans all had names, the gibbons did not! He suggested that the two we watched should be named ‘Hitam’ (Indonesian for ‘black’) and Putih (white).

The definite highlight was the elephants. Baby Mali was born on the same day as Baby A.

Watching the elephant family was enthralling. We were lucky enough to watch them walk from one ‘paddock’ to another. Watching them link their tails and walk was, according to S ‘the best thing I have seen ever!’.

I had never seen elephants link together before. I agree it was amazing to watch. What beautiful creatures.

So happy birthday to you my gorgeous little baby A

And happy birthday to you baby Mali!

Mighty fine…

11 Jan

Mighty fine motor control that is.

S did this all by himself.

It’s just a simple card threading activity, but the fact that he could do it BY HIMSELF makes me smile so much. The only ‘modification’ I made was to wind some sticky tape around the end of the thread so that it was a bit more stiff and easier to thread through. And I threaded it through the first hole and tied it off so it couldn’t come undone. Apart from that, he did it all himself with only a few reminders from me along the way to use his ‘helping’ hand as well as his ‘doing’ hand.

That gives me such hope for school!

Also fine is our progress with M on the toilet training. He’s very keen to use both the toilet and the potty. As you can see below, the potty is coming with us everywhere.

We had our first poo in the potty yesterday – woohoo!  Today he’s at child care for the first day of the year. Fingers crossed he’s having a good, dry, clean day there :-).

I was on the search for best kids books for encouraging toilet training last week. Just thought I’d share that for M, of all the books I borrowed from the library (and there were several) the one that hit the mark was ‘I want my Potty’ by Tony Ross. It’s one of the Little Princess books. M has been wandering around the house and garden over the past week saying quite frequently both ‘I want my potty!’ and ‘The potty’s the place!’. Cute.

And another fine thing is watching our gorgeous Baby A head towards his first birthday this weekend with growing confidence and cheekiness. As you can see below, I don’t think he’s too far away from taking a step or two….(and note M in his UNDIES in the background! If you’re wondering what M is doing, he’s being a patient for S and taking off some bandages).

And finally on the fine front, I am back in training. I will be doing the 14.38km Run for The Kids in April. All money raised goes to the wonderful Royal Children’s Hospital here in Melbourne, a place to close to our hearts. We were there just yesterday for a dermatology appointment for S (his continued poor skin is definitely NOT fine :-()

I’ve been getting in a run nearly every day this year and looking forward to the challenge. Also happy to have anyone join me?

Thanks so much for all the supportive comments on my last post. I love a bit of blogtherapy. I feel so unburdened about getting it off my chest and we’re just focusing on the NOW and the future.  Thanks again for all your lovely words xo

Guilt

7 Jan

When M was born, my first emotion was not love. It was relief. Relief that he was born safely. And then, when I held him close to me in my arms, the emotion I felt was not love. It should have been. But it was not.

It was another emotion that had no place in the moment when I should have been welcoming my second born son into the world.

It was fear.

I was full of fear suddenly BECAUSE my heart did not swell full of love the way it should have.

Looking back now, it makes some sort of sense. The pain of S’s terrible birth and that fleeting moment when he was so close to being held in my arms, when he did not cry and was limp and blue, before the alarm button rang and the room filled with people and my husband, my strong, unflappable husband was suddenly pressed against my side crying and praying.

That moment could never fade. It’s etched within me. The moment I should have been the happiest ever in my life – a mother, finally! But instead I was crushed, devastated, guilty.

Guilty because for days I believed that his birth injury was my fault. My fault for not pushing hard enough. For not knowing he was in trouble. For not protecting him. For not bringing him safely into the world. My first child.

I didn’t keep that guilt. I learnt the medical explanation for what had happened. Listened to the doctors, googled long into the night. And realised it wasn’t my fault. But still, the memory is there.

And of course, to be giving birth again, it was natural that I should have been taken back to that place.

So instead of joy, jubilation, LOVE LOVE LOVE, what I felt was relief and then the fear.

And I’ve realised since then, that between these two emotions there was another emotion, the emotion which led to the fear. It was a kind of  vindication. Vindication that I COULD do it after all, I could bring a child into the world safely, healthily. This emotion was so different from the relief. The relief suggested I was happy my son was safe. The vindication turned the attention away from my son for the briefest of moments and back to ME. It was about ME and suddenly not about him.

And so then, that moment of bonding that should have happened the moment I held him. It didn’t.

And then I felt the fear.

The instant that I felt fear that I wasn’t filling with love  the way I should have couldn’t be taken away once it had happened.

I should have probably sought some counselling.

But I didn’t. I was sure that we would bond, we would connect the way a mother and child should.

And we did.

But it took time.

And I suppose naturally enough, what replaced the fear was more guilt. Guilt that I had let my son’s birth be overshadowed. That I had let him down by not being able to immediately open my heart to him.

Since then, the guilt I’ve felt over M has taken many forms.

For all the days that he’s had to be dragged along to appointments and therapy sessions for his older brother. Or just as bad, the guilt for the many, many days that I left him at home with his dad or Aunty J for the same reason.

For how much I couldn’t help him deal with his terrible eczema when he was a baby (surely I could have done more?).

For the lack of opportunities he’s had to play with other kids his own age. No playgroup, very few play dates. No gymbaroo or baby yoga or water awareness or Hi de ho music classes that I’d managed to fit in with his brother in addition to all his therapy.

For the lack of quality time we spent together.

Even when S moved on to kinder and we had more time, I was pregnant. I was tired. We didn’t go to the park. We went home so I could lie on the couch. He watched TV. Far too much TV.

Sure, we did things together as a family. Lots of things. But for M and I alone or focused on his wants or needs, I am filled with guilt. Terrible, terrible guilt.

And then of course baby A arrived. And suddenly M was a middle child. I was a middle child. I stumbled through childhood complaining that ‘it wasn’t fair’.

I should have made the ultimate effort to give M more time last year. BUT a new baby is demanding. And it was S’s last year before school. We were so busy. So very busy. And suddenly the year was over.

And now as 2011 begins I am filled with more guilt.

He’s lurching towards his fourth birthday in March.

And only now am I taking the time to focus on helping him toilet train.

Only now can I really recognise (or at least admit) how delayed his speech is, how limited his social skills are, how many things he should be able to do but can’t (or won’t).

And to fear that we might find ourselves at some point in the near future labelling what we’ve always called his ‘high spirited’ behaviour, his quirky traits, his unique personality as something more concrete, more clinical.

I don’t fear another diagnosis.

We’ve gone far enough down the path with S to know that having a child with some form of a disability isn’t the end of the world. For sure, it’s a new world (though spare me the sappy Holland version), but it’s bearable and it’s as full of highs and lows as any other parenting experience.

No, what I fear is the guilt of M getting a diagnosis and me thinking that I should have known and I should have had it recognised long ago. Of finding out that I could have done, SHOULD have done earlier to help him.

So, I’ve opened myself up here. I needed to get all this out.

I’ll be sure to delete this post before he’s old enough to read it.

We’re seeing a developmental paed (S’s wonderful paed in fact) in the next few months and we’ll take it from there.

And I have vowed, as my most important New Year’s resolution ever, that my beautiful second born son will never again be second fiddle. That I will rise above the challenges of him being a sibling to a child with a disability and with all my heart and soul and love, so much love that these days I can barely hold it in without smothering him with kisses all the time, I will ensure that he gets all the love, affection, attention and TIME that he needs from me.

And I hope with that, the guilt will finally be banished forever.

Day SIX, pick it up quick….

6 Jan

Of the new year and day six of toilet training my reluctant little boy M.

***WARNING! FOLLOWING CONTAINS DETAILED INFORMATION REGARDING TOILET TRAINING. STAY AWAY IF YOU ARE EATING (OR JUST NOT INTERESTED. I PROMISE I WON”T BE OFFENDED!) ;-).

M turns 4 in just three months time. I’ve followed the ‘wait til he’s ready’ approach for as long as I could. Now it’s a matter that I am ready, and he has no choice :-). It is one of my key resolutions of the year to finally succeed with this one.

So far, we’ve had  some success. He’s only had a couple of accidents with number ones over the past few days – thanks to a healthy mix of ‘rewards’ on offer – ranging from 10 minutes of Thomas on DVD (all TV has become a privilege to be earned as of 2011 – another of my resolutions), a play on the iPad, a trip to the shops with mum, or just good old fashioned lollies or other yummy treat.

Not having as much success with the number twos. M is more than happy to sit on the potty for hours. But when it comes to needing to do one of the big ones, it’s potty away. Luckily the weather’s been good, so we’ve been outside. It’s easy to clean poo off the concrete or the grass.

NOW, there is a reason why I am sharing this lurid detail with you. To those who have gone before me.

HELP!!!!

How do I get this boy to deliver his somewhat significant packages into the correct receptacle?

Any advice welcome :-).

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