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Thursday, 31 May 2012

What a week....!

It's been a tricky week this week!  My depressed mood of a few weeks ago has certainly lifted, as I knew it would, although it felt an impossibility at the time. 
This week I have had no time to myself. I haven't had space in my head to reflect on anything lately, and dont we all need (and deserve) a bit of space. 


It all began with Miranda throwing up at 5 am on Monday and continuing for 12 hours.


Then the dog ate my shoe! I was so angry (mostly at myself) but oooohhhh, my favourite pair of winter ankle boots, RUINED! 


With Miranda vomiting and gassy, I had to cancel appointments  at  Westmead  for Charlie who was to have his new afo (ankle foot orthoses) and kfo (knee foot orthoses) fitted and an appointment with his physio. 


On Tuesday, Ben caught the wretched virus and stayed home. I rang the hospital to see if our orthotist, Tom, had a free appointment. He did, so up the highway I dashed with Charlie!

Waiting to be fitted with his new walking equipment, Charlie became so upset he needed a dummy!

I thought that our visit to the Orthotics Dept was going to take 20-30 minutes maximum. It took nearly 2 hours! It was very frustrating as Tom hadn't finished the orthotics as he had a fair bit of modifying to do on both of them, not to mention that he had put the straps on the wrong way. 


You would think that there is not much to traumatise children in a simple, little room, but Charlie cried for most of the 2 hour visit. (We sang twinkle twinkle and Old MacDonald a lot!) I think he has such bad associations with small white rooms in that hospital, where he has had needles or cannulas inserted, he was expecting another bad experience.

GET ME OUT OF HERE!!

Eventually, we did get out of there.


These pictures are really for the grandparents and anyone interested in the kfo. Charlie only has to wear the kfo on his left leg as his knee turns inward as he walks. The kfo will force the knee to face forward as he walks.



We put it over some tights so it wont rub. He is not happy having it put on.
But as usual, Charlie is taking it all in 'his stride'. As much as he hates the fuss of having the kfo fitted and put on in the morning, it is not holding him back.


this is just cute!


By today, Thursday, Ben had almost lost his voice and the doctor gave him 2 days off work. So he is catching up on his report writing - only 120 or so to go.

working away - 'Jane' is doing well, she's top of the class!

So for next week I am praying that everyone recovers from the nasty virus, and that Ned and I dont come down with it. I need everyone to go back to school and work so that I can have some time in my own head. To allow me to stop and get my feet back on the ground with the help of a large cappuccino and a date scone.


I'll be needing therapy to get over the dog (I cant even say her name) eating my favourite boots. And I mean she completely wrecked one, never to be worn again......


Favourites this week:


TV: 'Offspring', Channel 10, - so sad with Rocket dying but loving Gary Macdonald
'Silk', ABC1,- wouldn't we all love to be that brilliant and to be pregnant with Rupert Penry-Jones' baby!
 also watched 'Tricky Business' on WIN because it's filmed in Wollongong. The clever camera angles make Crown St Mall look almost glamorous.


Dud of the week: Ben insisting on watching the 2011 Royal Variety Concert (my idea of dire!!!) 




Warmly,
Kate













Monday, 28 May 2012

Action on the soccer field.




Mittagong Under 8's is having a good season. We have won the last two matches. The boys are really starting to get the hang of the game and the dynamics of their team. It's exciting to see all of the boys improve each week. 






The boys are from different schools and grades to make up the Mittagong team, but with the blow of that whistle they become a dynamic single-minded body of boys all aiming to play their best.




The great thing about community sport is that it brings parents together too. Perhaps people who wouldn't ordinarily mix get rugged up and ready to cheer on each other's children for an hour every Saturday morning.


the Mums and Dads brave 6 degree day to watch the match


Ned is having a great time and it is so rewarding for us as parents to see him out there having a go and relating to other children.  
action shot of Ned

love the focus
Ned's efforts on the soccer pitch inspire us to go out and give life our best, too.

the entire family braves the cold
(as if they weren't cold enough we enjoyed a Mr Whippy icecream later!)








Friday, 25 May 2012

Pray and parent.


It's official, Charlie is sick.  And it is great! After a night of fevers and vomiting I took Charlie into the doctor this morning and she diagnosed a virus/cold. This must be about the first time that Charlie has joined the rest of his preschool classmates by catching a simple childhood complaint.  YAY!


He doesn't quite know what to do with himself as he feels pretty rotten with a runny nose, a sore throat and temperature but then he's never really had a cold before.


                                      Very un-Charlie to sit on the couch in the middle of the day


I was just thinking about the kids being sick and caught myself wondering again about Miranda and how having 2 siblings with special needs really effects her now, and how that will manifest itself later in life! I know she can find things exasperating.  When Ned was having weekly counselling last year, Miranda asked when it would be her turn to see the counsellor. So I said when Ned had finished it would be her turn (bluffing madly as she was never actually going to see her).  When Ned had finished I offered her the opportunity to go next. 
"Do I have to miss school?" she asked. "Yes" I said "an hour on Thursday mornings."
"Hmm." she said, "maybe not right now, maybe when I'm older and have things to talk about."


Miranda is in quite a unique position in the family as she is close to both of her brothers.  There is only 20 months between herself and Ned and they have tumbled and played together and kept each other company like a couple of puppies since they were toddlers. However, there is another side to Ned and his Asperger's which doesn't include her, in fact it doesn't include any of us. The part where Ned focuses to the point of near obsession on his interest, usually the computer game Minecraft or some fascinating facts on engineering concepts well beyond my capacities.  






Miranda is a very typical girl who loves to dance and sing along to the theme tunes on ABCkids and most afternoons this is what she does with Charlie. She is teaching Charlie to dance (he kind of shuffles) and they both love singing, which they do at the top of their voices.  


Miranda also invents games to play with Charlie outside, she on her scooter and him on his trike, and indoors, involving doonas and pillows and a lot of peek-a-boo. And Charlie adores her for her efforts. The beautiful thing about the two of them is that it is always play within Charlie's capabilities.  Miranda choreographs little routines and they both have a go at the steps. Charlie seems quite convinced that he is just as good as she is - and to the experts the fact that he can even stand unaided let alone shuffle his feet is still a great medical miracle!






Every family that has a child with significant special needs deals with the daily balancing act of one of  the children requiring more attention to do simple day-to-day things.  And although as a parent you make every effort to not make the way attention is divvied out obvious, everyone is very aware of what is going on. Charlie requires extra attention to toileting and mobility and constant monitoring for his physical wellbeing in case of shunt problems. We dont make a big deal of any of this it is simply what has to be done and the other kids dont seem to mind. But it is very different when Charlie is in hospital as he was last year. The other children suffered significantly with the chaos of our lives during that awful 6 months and it changed the dynamics of our family.  Ned slipped into the symptoms of his Asperger's, and Miranda came to believe she could do it alone- she was only 5 years-old.  One year on and Miranda and I are still negotiating the terms of our relationship.  She feels she knows what is best for her - what to wear, how to cross the road - and I have to convince her that she can rely on me to do things for her and let her be a child!


                                        Miranda on her way to a birthday party this week


And as for Ned...living with Ned everyday is a constant test in mindfulness. When we forget ourselves and Ned becomes overwhelmed, then we all have to deal with it. When Ned 'breaks the rules' then sometimes we, as parents have to approach the situation in a different way than we do with Miranda.  Sometimes Miranda sees this and understandably gets upset and angry - and it's not fair.  But he does get disciplined in a way that has meaning to him, as do each of them.


When the new parents I have worked with comment to me that they wished their newborn had come with a manual, I wholeheartedly agree with them.  We are all winging it, and every day we all have to make it up as we go along. 


Sometimes you just have to pray and then parent! 


Warmly,
Kate 








Sunday, 20 May 2012

Sons and daughters, come as you are.




                                                                       Ned at 6 weeks

                                                                 
There are a couple of members of our extended families who are having babies and it is an exciting time. It's nearly time for that ultrasound where they can tell the sex of the baby and I think one couple will want to know and the other will opt not to and wait for a surprise. 


For Ben and I, Ned was our second pregnancy. I suffered an ectopic pregnancy and had to have emergency surgery on ANZAC Day 2003 to remove the 9 week old foetus and my right fallopian tube.  We didn't have time to process this or even grieve when, much to the horror of the doctors, I was pregnant again 6 weeks later. 9 months on Ned was born.  


We asked to find out the sex of all of our babies. With Ned we kind of hoped for a girl but we were ecstatic with a boy.  Then between our combined siblings and cousins 7 boys were born in 2 years and only 1 lonely,gorgeous girl! My parents had a granddaughter and 3 grandsons.  And Ben's parents had two grandsons.  


Could we score a girl next time?  


Oh, how we hoped so.
  
When Ned turned one we announced with great delight that we were pregnant again. There was no mistaking it both of our families were hoping it was a girl. I'll always remember making the phone call to my Mum after our 19 week ultrasound. I was very emotional and simply said, 


"We've broken the drought!"


Somehow  we got really swept up with the promise of a boy and a girl. Our boy loved everything boy's should - roadworks, cars, trains, diggers and sandpits. But I was waiting for pretty dresses, braided hair and a two-storey dolls house with old-fashioned furniture.  


Then in October 2005 Miranda arrived in 3 hours and 3 pushes. We had our pigeon pair - how clever and how perfect.  


                             our 'perfect' pigeon pair on Miranda's third birthday with Ned (4)


But it's funny how things turn out and children are more than their gender, they are themselves.  Miranda hates me doing her hair and Charlie and I play with her doll's house.  However, she is a sucker for a party frock and pretty shoes- YAY!!

With our very sweet pigeon pair in place we were not planning on having any more children. But no one told Charlie that and he appeared 31/2 years after Miranda. Charlie's pregnancy was a roller-coaster journey and at times we were totally overwhelmed with the drama of losing one twin, and then having Charlie diagnosed with a major birth defect. At times it was harrowing and was a reminder that to us that the gender of a child is not what matters, but rather their health and well-being.  That first week of knowing there was something wrong with the baby inside me will stay with me forever. I never knew such grief and guilt.  The thought that my baby was not 'healthy' kept  resonating through me.  After all it's what we all say - "I don't mind what the sex is as long as it's healthy!"  


                                 the children holding Charlie for the first time at the Children's Hospital


It is a great joy and a priviledge to speculate and dream about the sex and features of the child-to-be when pregnant.  Who will he/she look like? Will the tall genes be passed on or the short and chubby ones? Will they be left-handed like Dad or a red-head like Grandma? 


But in the end what every parent wants is a baby who is healthy and thriving and ultimately happy and there are many definitions on what is healthy and what is happy. Ultimately our job as parents is to embrace each of our children for exactly who they are -whether they are born with an obvious disability, or they develop special needs as they grow older or they suffer from something as straightforward as 'Middle-child syndrome'. And the great responsibility of we parents is to then nurture and encourage each of our children to be the very best version of themselves,  which has very little to do with their gender or the colour of  their hair.
                                                 

                                                             our three delights at the park

We have to love them for who they are, after all it's what we expect them to do for us!


Warmly,
Kate







Tuesday, 15 May 2012

Mother's joy and despair



I had a lovely Mother's Day on Sunday.  Ben spoilt me with flowers, and cooked my favourites for breakfast, lunch and dinner. And then washed up, too!  The children showered me with special gifts of photo frame, bracelets (2 the same from the primary school stall!!), a jewellery holder and a funny smiley flower that bobs up and down!
                                     our little family on a day trip to Sydney a couple of weeks ago

It was very cold and windy outside so we spent the afternoon indoors watching 'Nanny McPhee'.  My idea of Lovely.


Then I woke up yesterday and I felt as though the world was ending.  The low mood I had been trying to ignore for a few weeks, fell heavily and held me captive for most of the day.

I thought about just writing a simple entry today about the joys of Mother's Day and how it all went tickety-boo, but it wouldn't be very honest and I know that most people have a Depression story, or at the very least know what it's like to have a Bad Day.


A lot of people know that I have been battling Depression on and off for the past 20 years.  It is an unwanted but constant companion and most of the time I manage it pretty well.  I was diagnosed as Bi Polar a few years ago after experiencing a couple of distressing highs which manifested as periods of great irritability rather than a pleasurable elevation in mood.


I like to think that after all the support I have had and the 'work' I have done to help myself, including therapy, that I have it beat, but then days like yesterday happen and it feels like I'm back at square one and I feel very defeated.  But everything feels grim on these days, and I am nowhere near square one, it just 'feels' like it.  And my 'feelings are not facts'.  Feelings pass given enough time and when they are not invested in. I find I need to acknowledge them and then let them go. 

                              a daily walk in the Autumn sun with Charlie and Annie keeps me sane


So I realised yesterday that I had to cancel some of  this week's appointments, I had to walk in the sunshine with Annie and Charlie every day, I need to do some knitting whilst watching some tv (yes this means sitting down and stopping for a while each day).  I had to give myself a week long Mother's Day - looking after myself, putting myself first and even pampering myself a little. I need mental space to not get dragged down by those bleak thoughts so that means that study and Mother Bond business activities have been paused for at least a week. If I were physically ill I would have to stop as my body would insist upon it. I can no longer pretend that nothing is going on when my mind has been a battlefield for a couple of weeks now and will be if I dont STOP!

                               some cooking is always good therapy when I can find the mental energy

I do feel a bit better today because of the things I have put into place to care for myself and so that the Depression doesn't take over my life as it has done in the past. Most of all I hate it when the children notice my Black Dog, I really resent it and can sink further into the black mood, rather than out of it.  But I have to make sure I dont feel guilty that it happens, just to take notice so that I can stop it from getting worse and too invasive.


The experience of depression and anxiety that I have had for most of my life at least gears me to be a somewhat empathetic mother of a child with Asperger's.  Ned often finds his experiences in life mentally overwhelming and he can become anxious, or at times very bleak about aspects of his life.  It's hard to see your 8 year old go through these intense periods, however I can honestly approach him with absolute understanding about how real his feelings seem.  Then I reassure him that 'this too will pass'.  And they do, and the sun shines again and he forgets like 8 year-old's do and gets on with the important things like soccer and computer games.


                                             a weekend coffee date with Ned to keep-in-touch


I really hope that if you are reading this and going through a black and bleak time, you can see that you are not alone.  Even when our lives look perfectly happy and normal, it is not always the case.  I am very happy with my life, I do not get depressed because something is terribly wrong, but there are times when I 'feel' that this is true.  Feelings can be so strong and so persuasive, they can make us believe ugly menacing thoughts, this is something I struggle with often.  But with positive thinking, the help of medication and a loving, devoted husband (who is very clear-headed and just about as persuasive as my feelings and thoughts), I find I get by OK. 


I hope you do, too.


I read this yesterday and it helped me decide to write about my Bi Polar:
"Those that matter don't mind, and those that mind, don't matter'.


Take care,
Katex













Wednesday, 9 May 2012

Some days make a difference



By the way, there is a video at the end of the blog worth seeing....


I was working on a blog about motherlove and bonding but then yesterday happened and was a real distraction.


Charlie has been well and truly under-the-weather for about a week.  So much so that we couldn't go to an exciting park date with his friends at a local park last Saturday.  He was holding his head, he had been crying for seemingly no reason and lying down to play with his cars. In the past these activities have been indicators that the shunt in his brain was either blocked or faulty.  Then, yesterday Charlie was looking miserable and wouldn't even eat his breakfast and Ben and I decided we needed to do something. We bundled Ned and Minnie off to school, and left Annie with her friend Sherlock, and drove up to the Children's Hospital at Westmead.


Our Emergency wait.  (Ben left his real glasses in the car! He kept saying he was 'light sensitive'.)

It was a long day in Emergency.  We waited more that an hour and a half for our initial conversation with a doctor.  Then more time went by and finally Charlie had an xray series and then a CT scan.  The last time Charlie had a CT scan he didn't require sedation (we used music), so the staff attempted to do it with him wide awake, at first.  He wasn't having it though. We put Monkey through the machine and everything but he refused to lie down with a lot of noisy protest.  So back to Emergency for that ghastly-tasting sedative Ben expertly squirted down his throat.  He has been known to have the sedative and remain wide-awake. I found myself praying that he would conk out because we really needed this picture of his brain!  And then he fell asleep and very deeply too.  So we raced back round to get that vital picture and then waited for the results....

                                                          All tests completed. Thank goodness.

The Neuro fellow appeared and announced that everything looked fine. YAY!! He  acknowledged why we had brought Charlie to the hospital but at this stage the ventricle was not noticeably changed from his last scan. Ben and I were relieved, whilst Charlie just kept on sleeping!


So it was time to go home and see our local paediatrician.


We finally got on the road about 6.30pm and headed down the M4 and then turned on to the M7.  Ben and I were chatting away, discussing how many children had come into Emergency whilst we had been there.  There were beds in the halls and then we heard they had even run out of beds as were leaving - just on a Tuesday afternoon.  


Then a semi-trailer entered the M7 and drove up very close behind us.  We were driving in Ben's little Nissan Micra so it was a little intimidating.  Ben drives up and down the Hume Highway everyday for work so he is used to trucks, but then this truck pulled out into the right hand lane and sped up to go bonnet to bonnet.  Ben couldn't get away from the truck and then I noticed that the truck wheel was getting closer to Bens door. I screamed as the semitrailer moved over into our left hand lane and pushed us off on to the thin shoulder!!!


Thank God for Ben's driving skills and his calm nature, and having a little car that could squeeze down the shoulder next to a thick cement wall one side and a menacing semi trailer on the other.
I think we both stopped breathing then.  As it dawned on us what had just happened and that we were alive and the car didn't even have a scratch.

Ben thanked the angels that were certainly there with us.




So a terrifying end to a Big Day.  It did make us so grateful to get home and hug Minnie and Ned, to tuck all of them safely into bed and to hold each other for a while.

                                      Annie and Charlie curled up together and crashed after a big day.

And here is a special P.S.
Although Charlie is still not 100% he wowed me again today.  Ben couldn't believe it, neither will the experts until they see it for themselves ....

video




-Go Charlie-












Friday, 4 May 2012

Autumn Days

We had a wet and miserable Summer here in NSW.  The only bit of summer weather we had was in Tasmania during our family holiday there in January.
But late Autumn has been lovely in the Southern Highlands. We have had bright, clear blue skies which has meant good weather for going outside. 


Charlie, Annie and I have been doing a daily walk around our local lake in an effort to wear out my child and very enthusiastic puppy. Lake Alexandra is very pretty and the sight of the autumn colours has a great soothing effect on my soul.


We'll make the most of these days as Winter will descend in a few weeks and the sun may seem a distant memory.
Charlie on his heavy-duty trike. Please excuse the dummy, we are working on it's disappearance!

I hope you are enjoying clear,sunny and inspiring days this Autumn.
Kx

Wednesday, 2 May 2012

Asperger's meets soccer

I just want to say how touched Ben and I were by the amazing display of excitement over Charlie's latest achievement.  Thanks so much for all the emails, texts and FB messages full of encouragement and cheers for our little lad.  


It has been really hard writing another blog to follow the last one. 


But we did have another achievement to celebrate on Saturday.  Our eldest son, Ned, had his first game of soccer.  Like many 8 year-olds every Saturday morning this winter he will be running around a muddy football pitch chasing a ball in a pack of children trying to kick a goal.  And we will be on the sidelines appropriately rugged up and in fine voice cheering him on.




My firstborn  is a very typical 8 year old.  He loves his Wii, his computer (Minecraft) and playing backyard cricket. He also loves the engineering program 'Big, Bigger, Biggest', designing buildings (his own version of the Burj Khalifa in Dubai only taller), trains and Google maps. He has some funny little habits and ways.  He's a really nice kid but had trouble socialising with other kids his age because he could be terribly intense.  When he was younger he would design complex systems with his plastic Thomas the Tank engine train tracks.


          Ned at 4 years old. Track building became a daily occupation. This is one of the more simple designs.


One day Ned's preschool teachers took me aside to tell me of some things they had noticed about him. He was walking on his tip-toes.  He found it difficult to cope in the class without clear directions and structure. He was having trouble with his speech. We had moved just a few months prior and we had a caught an airplane to our new home. Ned was drawing the airport from our original home over and over again and the teachers were concerned.  What could it all mean?


Then someone brave said "Could he be somewhere on the 'Autism Spectrum'?


Ben and looked at each other and didn't know what to think.  I knew a bit about Autism as I had a first cousin who was truly autistic in it's most limiting  and crippling form.  He had attended a special school and could barely speak and I knew none of that fitted our Neddy.  


What we didn't know was that the Autism Spectrum is so wide that most people fit on it somewhere.


So we went visiting a few experts, a child psychologist, an OT, a speech pathologist, a paediatrician or 2. For a while we couldn't get the experts to agree.  Ned looked people in the eye and conversed with them in quite a friendly manner. He seemed to have an empathy for those around him, although he could also be very rough and had no idea of his own strength or spatial awareness.  He would have meltdowns and didn't cope with change or anything unexpected. And he was moody - going from the peaks of the most exciting highs, to the troughs of absolute despair.  All this and he was just 5 years old.


Time went on though and we didn't look for a 'label' for him.  He started Big School and we waited to see how he would go.  Finally, last year, Ned was diagnosed as having High Functioning Asperger's Syndrome.   Ned has never asked why he was seeing doctors and specialists.  We have been ready to discuss everything with him, but we're being guided by him and his own internal process.


Up until now Ned has found being in teams at school difficult and didn't really 'get' the dynamics of team sport.  He has always been challenged with his physical coordination and was a low-tone baby.  This made games hard and running and various sports did not come naturally for Ned.


Then he started hanging around with a nice group of boys at school and at lunchtime they would kick a soccer ball around.  Soon they all really got to like it and Ned started to understand how to play alongside and with others. And, now for the first time, Ned was ready to play a team sport.  


Last Saturday was the first game for the season, and the first game for the team.  We all braved the 3 degrees to watch the Under 8's game at Moss Vale.  And as my daughter says, it was spectacular!!  Ned kicked the ball, took his turn throwing it in after the ball had gone out, had time on the bench and had a seriously GREAT time!!    


So every Saturday morning for the next 3 months, come rain, shine or frost we will be found on the sidelines of football pitches around the Highlands screaming 'Go Mighty Mittagong!!!' 


....and loving it.