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Thursday, 28 June 2012

A leap of faith leads me to Reach for the Stars.

Ned took part in his first school concert on Tuesday night. The school has a concert for the senior classes every 2 years and the children and teachers prepare for it over the first 2 terms and then present the show to their families.

Ned was on a high after the show

Ned had told us a little about it, mainly what his role was,the two songs he was singing and his costume needs, so Ben and I turned up with few expectations.Well, we were blown away. What a wonderful night of entertainment, talent and creativity. All the kids from years 3 to 6 had participated in some way and they were all brilliant and inspiring. We laughed ourselves silly, and clapped hard. A great night for our little public school and a terrific experience for all of the children. Ned had a great time and was on a high when we got him home. Unfortunately, Miranda was really sick that night and could not come with us. (Thank you to Papa who came along to look after her and Charlie). But she will love being a part of the concert when it is her turn in 2 years.

As parents, school concerts provide an opportunity to sit back and admire our children (and our friends' children) and classmates. Being there to see Ned in his few minutes on stage with his class was lovely, and somehow it transported me to another time and place that seemed completely unconnected with the evening.

There was a time when I thought I may never have children. I really wanted them, but with my mental illness having a huge impact on my life, particularly in my 20's, I didn't think I'd even find a partner, let alone have my own children. I think at one stage, when I hit 30 and was unmarried and without child, my mother suggested that I would make a nice stepmother. But that was never going to be enough for me, not that it wouldn't have been a privilege to be a stepmother, but I wanted to carry a child and birth him too. So it was wonderful to meet Ben and fall in love and decide we wanted to make a life together. Ben didn't really have an overwhelming interest in having a baby, but as it was important to me we decided to try for a family not long after we were wed. 

I was on quite a lot of medication back then and I needed medical advise on what to stop and change so that we could safely get pregnant. I will always remember sitting in our GP's office and telling him that we wanted to start a family and him looking at me and saying simply "People like you dont have babies."

I said "What."

He said "People like you with mental illness dont have babies. I'll give you a 3 year contraceptive implant instead."

I looked at Ben. I was speechless, shocked and devastated. Ben in his own strong and silent way, stood up, pulled me up off my seat, and excused us and we left. Ben said no one tells you that Kate, that is our decision. (it was my "no one sticks Baby in the corner" moment)  Ben reminded me that I was not a second-class citizen or some kind of subhuman who shouldn't reproduce. He said we were going to have a baby and we were going to be great parents, parents every baby deserved to have, with a home filled with love and care and all good things.

Thank God for Benjamin! I was left pretty shattered and it took a real step in faith to cope with it and to move forward. I had some doubts but it was working through things with Ben that strengthened our marriage and his desire to have children.

We found a doctor who did support our decision and who didn't make me feel less of a woman and a mother. Unfortunately, we lost our first pregnancy but within a few weeks I was pregnant again, this time with our Ned. 

reach for the stars!

Now why my attendance at Ned's school concert took me back to that devastating moment in the doctor's surgery nearly 10 years ago, I'm not quite sure, but it did make me shed a couple of tears as all the kids came onto the stage to sing the final song 'Reach for the Stars', all about having a dream and never giving up.  I guess it reminded me of my dream of a family and how I suffered to achieve it, but I got it in the end. A dream doesn't have to be about being the best dancer, or the fastest driver or a famous celebrity, it just has to be honest and from your heart. Now I look at my dream - Ben and my kids and I am dancing with the stars!


Monday, 25 June 2012

I give thanks.

It was a lovely weekend here in the Southern Highlands and it offered us the opportunity to stand back and take stock. Saturday saw us running around with the kids sports. And on Sunday at church we celebrated the 35th birthday of the Uniting Church. Then we went out to a soup lunch with new friends and had a lovely time. A brisk afternoon walk in the pale winter sun and clear skies ended the weekend with a family happy and content that we live in a beautiful part of the world and we are very fortunate with our life, family and friends and comfortable warm home. I know I so often spend each week running around and giving myself no time to stop, breathe and reflect. But stopping is good for my brain and my soul, and I am a much nicer person to live with when I stop for a while.
Miranda pushing Charlie on our weekend walk around Mittagong

I haven't been writing as frequently as I would like because I am madly trying to study and finish my Doula course. I have completed the 5000 word assignment reflecting on one of my birth experiences. As every woman finds, each of my birth experiences were very different, but I chose to write about Charlie's birth. Many times it felt as though I was going through it all again, and I ended up in tears a couple of times as the grief and the joy went through me again. In my results and feedback my trainer said she had been in tears!

I am nearly ready to sit two physiology tests, and one lactation test this week, so my mind is full of hemorrhoids and mastitis advice. I also have 3 book reviews to do over the next 3 weeks. Then I must find one more family to do a prac with and I am done. So if any of my Highlands friends know of a family having a baby in the near future who would like some FREE support please let me know.

I have Miranda home with me today. It's very unlike her to have any time off school and I cant quite figure out if there is anything actually wrong or if she is just very tired now it's the end of term. So I'm giving her the benefit of the doubt because she would normally never take time away from her beloved teacher and friends.
the beautiful clear sky meant that the temperature rarely got over 10 degrees

Thanks so much to everyone who commented on last week's blog, it was very encouraging and I am remaining mindful about my relationship with Miranda and actively looking for opportunities to love and encourage her.

Have a good week, I hope you find time and reasons to stop and be grateful in your life.

Wednesday, 20 June 2012

Mother Guilt!! And darling daughters.

There was a great response to my last blog, so thanks to everyone who commented or who has been in touch to share their point of view, or experience. The thing I find really exciting is that it really got some people talking about the challenges they face within themselves or with their children and I am really grateful for the sharing, I have learned a lot. Most importantly, I found that we are not alone in our daily struggles for a good life. 

I seem to spend a great deal of my time thinking about my 2 boys and dealing with the demands of their various extra needs. It seems I spend a great deal less time with my daughter.  And you know what, much to my shame, I think this is true. Mother guilt!!!

I had allowed the mess on my desk to grow to a ridiculous size and set myself the task of sorting it out on Monday. I found little surprises distributed throughout the paper work and bills which made my heart leap they were so utterly delightful and heartfelt.  How could I not have noticed them before? My daughter writes me a note most days. Sometimes it's just  "I love you Mummy", or "I love you because your earrings are pretty". There were notes of apology for when she scribbled on the dining table, and when she broke my favourite piece of venetian glass. There were numerous drawings in texta and crayon of flowers and rainbows, our family together with each member named and others with just Mummy and Miranda holding hands. How could I not have noticed these treasures before now? How could I not have seen my darling girl and all of her efforts? 

such a little cutie...

But guilt is a pretty useless feeling so I decided to use the energy on tuning into her for a couple of days to see what I could learn about her and from her. This is some of what I discovered:

She is loving and caring, always ready with a hug and a smile. Every morning she praises me on what I wear often saying "You look 'bootiful' Mum". 

She makes a great sparring partner for Ned and brings him back down to earth or out of his own world by making sure he has fun and games and gets to be very silly. 

Miranda is an extraordinary big sister and friend to Charlie. They spend hours together playing games, dancing and singing and watching ABC4Kids and DVDs in the cold weather. Charlie imitates her and she encourages him all the time. She has such grace, patience and generosity when it comes to her 2 demanding brothers, and rarely complains about them. ( a technical hitch with this paragraph has held me up posting!!)

And she is smart, pretty with gorgeous thick hair, very funny with a wonderful turn of phrase and a crazy sense of the ridiculous.

It has not always been easy for her. Last year when Charlie was in and out of Westmead Kid's Hospital I missed the first two terms of Kindergarten and  although we both cried about it a bit (me more than her) she never complained. She could have, and perhaps, she should have. Instead, she became very self-reliant. There are times I have to remind her that I am the parent and I will do the worrying and take the responsibility and she reluctantly gives in. It makes me sad that she has had to become so tough because I was away so much. With so much disruption at home last year Miranda poured herself into learning and school. School was highly structured and totally predictable and she had a great teacher who was incredibly supportive, unlike home where chaos seemed to reign.

first day of school 2011

On Tuesday night I watched a rerun of 'Steel Magnolias' on tv. I was trying to write my blog but found myself putting down the laptop and picking up the tissues. I rarely cry at movies but Sally Field gets to me and as I was already thinking about my daughter it made me all the soppier. It left me with my bottom lip trembling!

So, I feel as though I have had a bit of a 'wake-up-call' about my Miranda. I need to notice her not only when she presses my buttons and scribbles on the furniture, but as she infuses our family with laughter and light. She gives so much all of the time, and I promise that I will notice her and continue to work on our relationship and pray that I can care for her and love her in such a way that she knows how much I love and appreciate her. 

Love you Minnie, xx


Friday, 15 June 2012

Labels can stick, and can be for good.

Firstly, can I say hello to the readers in the US and others around the world, I dont know how you found me and my little family here in Australia, but thanks for reading!

Right, someone has approached me wondering why I write about my children and mention their diagnoses, particularly Ned with Asperger's. This person wanted to know why do I use the labels of Asperger's and Spina Bifida to describe each of my boys, and thinks I labelling them unecessarily. I have only a couple of niggling doubts about 'outing' my son with Asperger's, mainly because he doesn't know his diagnoses yet  and that people will only see him merely as a 'label' and nothing else. But I have had personal experience where correct diagnoses and 'labelling' can be positive and even liberating... 

My struggles with labelling
As I have written before, I struggled with mental illness throughout my 20's. During that time I was given many labels that mental health specialists applied to me in an effort to 'understand' me and as a means of treating me. For instance, clinical depression, acute anxiety, complex PTSD, and at times, I did fit into these and other labels as defined by various medical books. Quite frequently, people responded to me according to my latest 'label', and it was much easier for them to go with that than finding out anything about who I was and that there was a real person beneath the label. I was exposed to a great deal of prejudice and at times, cruelty, because I was seen only as a diagnoses and a stereotype and not as myself.  

Although I have always been honest and forthcoming about my mental health issues, I have always tried to get beyond them as well. I was determined not to be a victim, not me! A few years ago I met a psychiatrist who changed everything when he insisted that my accurate diagnoses was in fact Bipolar 1 Disorder. At first I disagreed with him as this diagnoses had not come up before. So I went to the Black Dog Institute in Sydney where I was assessed and Professor Gordon Parker agreed with the psychiatrist. It was such a relief to find out there were genetic reasons for my experiences as well as key things in the environment which set it off. Finally, my world made sense.  I learnt what I could about the condition, then put things into place so we were prepared as a family, for when I might be unwell, and otherwise I could just get out there and live. I suddenly felt a freedom, a liberation, I had not experienced before. It was a Godsend.

Giving my children labels
So why refer to my children using their medical diagnoses? Because, simply,  I believe if we are upfront about it, we then get the opportunity to move beyond it. This blog is about the way our family interacts and how our diversities as well as our similarities make us, us. It is also a story about how we draw on each other to manage the challenges we face as individuals and as a family unit. Just like every family does.

Our various medical diagnoses while relevant, are not who we are, but they do offer an important insight into how each of us works. Take Ned, for example. Knowing that Ned has an Asperger's diagnoses accounts for some of his behaviour and attitudes. His diagnoses offers us a starting point of how to understand him and where to start to try and effectively communicate with him. 
Just to tell Ned "I love you" can need different words and actions than we use to say the same thing to Miranda and Charlie. Ned doesn't like impromptu hugs and kisses (although I do it anyway), he doesn't like to be surprised, and sometimes he cant even 'deal' with anything emotional if he is not in the right frame of mind. So those words have to be snuck in at just the right time in order to get a "I love you,too Mum" back at me.

Ned holding a brand new baby Charlie

 I have discussed here before what it is like to have a 'sick' baby diagnosed through ultrasound, and how devastating it can be. You live in grief for the remainder of the pregnancy, and I worried that I would be unable to accept my baby. But that moment he arrived, the second he took his first breath and screamed, I knew he was perfect, utterly perfect in every way. And not only did I accept him, but I loved him completely and would do anything for him. 
It didn't matter what an ultrasound told me about Charlie or what a doctor could diagnose from Ned's somewhat eccentric behaviour and interests, to me both of my son's are both perfect and wonderful. 

Writing this has made me quite emotional. To me the fact that our boys have additional needs enriches our lives as well as somewhat controlling them a bit.  Children bring so much wealth to your life, and children with 'labels' can add to it, unexpectedly. We celebrate every milestone, no matter how big or small, or when it is achieved. We appreciate the difficulties of achieving seemingly small, less significant things like when Charlie can shuffle to copy Miranda's dancing steps. There are many opportunities to share, and to enjoy seemingly smaller moments in life, so how lucky are we!

Whether you or your child is diabetic, coeliac, left-handed or has middle-child syndrome, embrace the labels and move past them to discover what is unique underneath, and celebrate the diversity. It's great to understand the mould, and then to break it...

I would LOVE to hear from any reader's who have families made up with members who have label's or extra needs and how you cope and what gets you through.

Thanks for dropping by,

Tuesday, 12 June 2012

kids conquer Questacon

Well I've just put my last child to bed and now have a chance to reflect on what has been a great long weekend. To have a break from our daily routine for 1 day is really lovely. Ben finished report writing yesterday so this morning we packed a picnic of egg sandwiches (vegemite for Charlie) and mandarins and drove down to Canberra to visit Questacon, the hands-on kids science museum. It was great and lived up to expectations.

Ben and kids ready to discover everything...

Questacon is really accessible and the disability parking was terrific and it was easy to get Charlie out and about. We had planned on taking the stroller in with us, but Charlie flatly refused, walking away from Ben as he tried to strap him in. So we had to get his walker out, which he took to with great Charlie gusto - but much to the disgust of Miranda. When we get the walker out for Charlie, Miranda and Ned wince, and then they groan, and then they walk ahead of us, quickly. They find it very embarrassing. Well, it shakes a bit, and is pretty noisy, and as it is quite wide it struggles to get through some doorways (like at church) and it takes up a path so that other people have to give way or wait. The thing is, Charlie doesn't mind the attention in fact he kind of likes the attention and power. I must say that a lot of people do stop to look at him in it, and I guess it is kind of cute. 

Entering one of the galleries today Charlie was charging along in his walker and virtually ran into a boy a bit older than himself in a very groovy wheelchair. Well, they did look each other up and down and then they admired each other's mobility equipment. The little boy's dad and I did laugh in a moment of solidarity, because they were both obviously different from all the other able-bodied children and so impressed with each other. 

The older children really enjoyed themselves at Questacon. Ned found a whole room dedicated to earthquakes and lava, and tsunamis. There was a section about architectural engineering for buildings and structures surviving earthquakes - one of his pet subjects. It is the perfect place for my Asperger's warrior and he was adequately stimulated for the whole 3 hours and didn't seem to mind the crowds - miracle. Ned had talked the entire 2 hours down to Canberra, all about Minecraft and his ideas for creating his own kind of server. He came to the end of his monologue as we entered the city and after taking one breath he said well, I'm bored what can I do now? If he is not being stimulated in some way that interests him, he is hopeless. It was all we could do to convince him that he could try to relax for the 10 minutes it would take us to get to  Questacon.  He talked all the way home too, but mostly being silly with Miranda. Miranda has a great imagination and doesn't need to be entertained constantly, the same with Charlie. But Ned's brain moves ever forward craving new thoughts and ideas and original connections between them.

On the whole Miranda had a great day, although there were a couple of minutes when she was sick of Ned's obsessions and Charlie ploughing through people and rattling his walker, and she wanted to be somewhere else. A grand scale meltdown loomed, but was averted with a bit of bribery and a hurry up, we continued on our way through the various galleries. She was such a girl and loved the many mirrored walls looking upside down, fat and thin, big head, wibbly-wobbly, etc. 

Total meltdown was eventually averted.

A highlight for the older children was when they put on overalls and climbed up about 4 metres where they hung from a bar and then free fell down a massive slide. Charlie sobbed his heart out watching the older 2, he desperately wanted to have a go. He was too young, but I doubt he will ever be able to do it because of his shunt.

We only got through 3.5 of the seven galleries. With nearly 3 hours under our belts everyone was a bit tired so we have left the rest for another day. And as we only live 2 hours away it's guaranteed we will be visiting again soon. We enjoyed the shop and everyone got a trinket so everyone was happy. It started to pour with rain on our journey home and the closer to Sydney we got, the heavier the traffic and the rain. At one point it was bumper-to-bumper at a steady 70 km in both lanes, a definite indicator that the long weekend was at an end.
I trust you have had a safe and peaceful long weekend as well.

Thursday, 7 June 2012

It's love Instagram (or Too tired to think!)

We are nearing the end of Term 2 at school here in NSW and I dont know about you, but I am stuffed. I've come home from ferrying Charlie around to his Early Intervention appointments today and I'm tired.
I'm over it.  

Having a child with extra needs means a great deal of time planning and making appointments, changing appointments, getting to them, getting home, and all the talk before and after the appointment. Fortunately, Charlie is working with fantastic and generous people here in the Southern Highlands, including his school teachers, Occupational therapist, speechy, physio, paediatricians and preschool. We are very grateful, but it is very constant and does get a bit exhausting. And we're the lucky one's, some of the Mums I meet at these appointments have even more to do each week with their little people.

I walked into the house this afternoon and my heart sank when I saw the ironing pile in my lounge room. Oh dear. It is massive! I would be ashamed of myself if I was that kind of housewife, but I'm not, so I fixed any potential guilt trip by moving the basket to the study so at least I'm not tripping over it. (This is not a hint to my marvellous mother-in-law, it will get done, I promise...)

Then Miranda started crying in her room, for all she was worth, because I asked her to pick up her clothes from the floor. Apparently, I must hate her, in fact, nobody likes her....This is a tell-tale sign the Term needs to be over soon.

Anyway, while my brain is turning slowly I thought I'd share some things with you such as my new happy habit - Instagram. 
Have you had a go yet? I love it..seriously. It is so much fun and better still because it is free.
here are some of my clumsy efforts so far:

Ned in bed

Miranda wearing the chocolate cake on her face

my baby!

Annie looking so innocent, but she is, oh, so NOT

taken on a Winter morning walk in the Highlands

Hope this post finds you well and indulging in your own innocent, fun, free, happy habit from time to time too. It's good for the soul and sanity.


Monday, 4 June 2012

Keeping up with the Royal family.

It is so great that each time I have a new post on this blog someone calls or emails their concern for myself and the family and wishes us the best. Thanks for that parents and friends. You'll be pleased to know, then, that everyone is on the mend now (thank heavens). I finally found time and space for that coffee and date scone this morning at my favourite little Mittagong cafe.  Ooooh the lovely calm of it all.

Later in the morning I finally managed to post one of my assignments for my doula course:- whoo hoo!!
And I walked the dog.

Well it's been a special weekend for all royalists, the Queen has been reigning over us for 60 long years.  I've got to admit, I'm a bit of a fan of the Royal family. I've grown up admiring the photos by Lord Snowden and Cecil Beaton and can remember afternoons spent with my Mum and auntie and cousins chatting about the Windsor family as though they were neighbours. I could even name some minor royals...and their children. 

It will age me, but I remember Prince Charles and Lady Diana's wedding day. I was allowed to stay up late that night and I was glued to the screen. I wanted to be India Hicks, a flower girl who got to carry part of the longest train in the history of wedding dresses. I pestered my poor mother to buy all the magazines and newspapers so that I could keep a bit of history in the form of a scrapbook. I still have it.

As a little girl I had seen the Queen on a royal visit to Tasmania, but I had a closer encounter many years later. In my second year at the  University of Tasmania there were a number new buildings and landscaping projects at the Launceston campus, and the Queen came to officially open them.  I checked out the route and found where on campus she was having a walk-about so that I could maximise my chances of getting close-up. I arrived and assessed my options. Then across the road I spied the perfect Queen-catcher, an elderly woman and her 2 CORGIS!!!! It was a time before international terrorism so I ducked under the tape marking off the street and raced over to the decoy. I slotted myself next to this lovely lady and waited. Needless to say, it worked! The Queen strolled down the street talking to the Chancellor of the Uni and spied the corgi's. Well she smiled moved to the lady next to me and asked what the dog's names were and how old they were. The lady bobbed a dodgy little curtsy and answered Her Majesty. I could have touched the Queen, I could feel her breathing. She was wearing a turquoise dress coat and white gloves with a little black handbag in the crook of her arm.  She was smaller than I thought she would be, she came up to my nose, and the most compelling blue eyes. Quite a moment.

we had a much smaller crowd in Launceston, but you get the idea

Once when I was working and living in London I spied Princess Di when she was still officially in the Royal family. She was opening a shelter for the homeless behind St Martin's-in-the-Field.  I caught a glimpse of the Princess, but the lasting impression was the paparazzi and their sliver ladders so urgent and relentless in getting their photos.

Last year's royal wedding gave me the opportunity to introduce my children to the Royal family. The children actually sat through the wedding and were very interested in the pomp and circumstance. Miranda loved the romance as well. The Diamond Jubilee has been blowing their mind's too.  Ned wondered why all of the boats were following the Queen, and what was a Queen really?
all made out of bricks it can be viewed from the M7 in Sydney- cool isn't it!

It's a hard one to explain, I just always seemed to take the Royal's for granted. In a time before Twitter and reality shows and instant YouTube celebrity the Royal family filled in a lot of those gaps, but with more tweed. However, the Queen has remained above it all, even if some of her brood have let her down at times. Her life and that of her family has been under scrutiny since she was 25 years old, and although she lives with enormous wealth and privilege her's is a life dedicated to duty and not of whim and fancy. I think she deserves our respect and admiration and all the festivities the Brit's can shower on her.

Three cheers for our Queen!!!