School holidays, and a slice of perspective pie

19 Apr

School holidays are over. They went way too fast.

We were blessed with the most beautiful autumn weather and made the most of it. We went  away camping for a wonderful few nights in central Victoria. We also enjoyed a few play dates with great friends and another great night away with lovely CP connected friends that involved a visit to the magical town of Walhalla which really is like stepping back in time. And of course we had lots of at home days where we all stayed in our pyjamas and made the most of the Autumn sunshine playing in our backyard and on our new deck.

School started on Monday. We had a slow start back for S who felt anxious and nervous about returning to school so he only stayed for the morning. However, he then stayed all day Tuesday, Thursday and Friday. Hooray! We’re going to keep Wednesday as a day off this term so he can get some rest. And also so we can fit in appointments. This week was Second Skin fitting and also a productive visit to the psychologist where we focused on the notion of things being ‘fair’ (more on that later!).

By the end of last term I was feeling pretty worn out. But the holidays recharged my batteries and I am feeling all set to take on new challenges and approach some of the challenges we already have with fresh eyes.

I also got a big whack of perspective pie on the last weekend of the school holidays. I was scrolling through my Facebook feed and my lovely blogging friend Kara had posted about another blogging mum who was close to turning off the life support system for her child who was critically ill following a major seizure. I had just finished reading a ‘devastated’ status update about something ridiculously trivial from another mum friend (who has perfectly healthy children and believe me, very little to be devastated about in her life) . To then, in the next moment read the words of this mother who was preparing to say goodbye to her son forever, who was focusing on the positives of their decision to donate his organs and who was celebrating how lucky she was to have had him in her life, for however long struck home with me. It reminded me to focus not only on  what is really important in life, but especially the important people. And to never forget to be grateful for what is great in your life rather than focusing on what is not. I wish her family love and light and peace.

Six

25 Mar

Can’t believe my beautiful boy M turns 6 today.  It hasn’t been an easy ride. He was hard work as a baby and toddler with all his food intolerances and challenging behavior.  He also had to take a back seat so often because of everything that was going on with his big brother. He’s not the take the back seat type of kid. There were lots of difficult days for us both – for us all as a family.

It will probably astound some people for me to tell you therfore that one of the best days of his life so far for me as his mother was the day he was diagnosed with high functioning autism. The relief this filled me with was indescribable.   It explained so much about who he was and also gave me such hope (yes, really!) for the future. Not only because of the funding and incredible early intervention therapy his diagnosis unlocked but because I knew for sure it was ok to parent him differently,  to apply different rules and to learn as much as I could that would help him learn some vital skills and strategies that come so much easier to other kids. It was the missing piece to the puzzle and just made so much sense!

And my god how he has thrived.  He has become such a fine,  beautiful,  well mannered, caring and studious big school boy. His teacher has given him awards for his hard work and effort and he is slowly building valuable friendships with his peers. He stood up at the full school assembly last Friday alongside the other children celebrating their birthday this week and used such a clear confident voice announcing that he would turn 6 today.

I had tears in my eyes watching him because I was so intensely incredibly proud of my boy. Of how far he has come, how hard he has worked,  how much he tries with all his heart to make sense of the rules of social etiquette and behavior and how every day he finds little ways to not lose his cool and to adapt to the world around him even if he finds some of the rules confusing and nonsensical.

I’ve learnt so much about high functioning autism over the past 18 months but I’ve learned much much more about my gorgeous boy. About how being on the autism spectrum in some ways explains who he is,  but it never defines him. He is a wonderful individual who loves trains, who loves to dance (and is becoming quite the groover!). Like his dad he loves all his electronic devices and gadgets.  He loves to dress up and do imaginative play with his brothers. He loves to swim. He loves to cuddle close especially on cold nights. He has an infectious laugh and a winning smile.

We had a lovely small family party yesterday and he’s having a party with hid school friends in the school holidays. He’s already been spoiled with gifts and love. And he deserves it all.

I am so proud and so very very lucky to be mother to such an exceptional, clever,  resilient and beautiful boy.

Happy birthday M! our 6 years together has been quite a roller coaster ride but I wouldn’t have wanted to have missed even a minute.  Love you to the moon and back and I think you are awesome x

Run your own race

11 Mar

I have spoken before about how I took up running a few years ago, inspired by the involvement of S’s early intervention centre’s involvement as lead charity for Melbourne marathon. I still run regularly and love it for reducing me stress and improving my health and fitness. And I do love taking part in Fun Runs. This Summer I have been particularly out there doing regular run events and even a few mini triathlons. I love the social aspect of doing these events as well as the challenge. But whenever I do an event, I try not to compete against anyone other than myself. My goal is never going to be to win, but to challenge myself a little further each time. So my only real competition is me. Last weekend I ran my longest run to date – 16.75km. And I loved it. I felt strong and fit and ran at a good pace. Better than the elation I felt after that run was what happened a few hours later when S competed in his first ever fun run. He ran 400m (2 laps of the course) along with a decent sized group of other 7-8 year olds who ran 600m (3 laps). It didn’t matter to S that the rest of the field ran an extra lap than him. And it certainly didn’t matter that he finished last. I am so proud of him for not giving up, for trying so very hard and for reminding me that it’s always about running your own race and never competing against anyone else. I wish I had been more like him in spirit when I was younger. I didn’t do school cross country runs. I never competed in school athletics comps and only under duress swam in school swimming carnivals. And why? I lacked confidence, but worse still I hated doing anything where I wasn’t going to win or at least do very well. It’s the same reason I never tried hard at maths. It was easier for me to just cop out saying that I couldn’t do it. I don’t have a lot of regrets in my life but I do wish I’d been less scared of failure when younger. I couldn’t care less now about how I go compared to others. I only care how I compete with myself – trying harder and pushing myself. In the 3 years since I started running I have improved my own running time considerably. And what I have learnt is that makes me feel good. That challenge to myself is wonderful. My children have taught me this. Taught me that I only need to challenge myself and no one else. And I hope in return I can teach them to always have the confidence that I lacked in myself as a young person. Back to Sunday, when S was still running after all the other kids had finished something so beautiful happened. Everyone on the side of the running track and standing on the adjoining train ststion platform started cheering him on. Loudly, enthusiastically, genuinely. It wasn’t sympathy for the boy in the walker. It was real emotion from a lovely crowd, quite a few of which have a disability connection because the event was run to support a children’s disability service provider. Special for us was that this included a lovely friend and her family who I met online and am lucky enough to now count as “real life” friends too. She was one of the first to congratulate S as he crossed the finish line. Meant a lot to me and to him! He was so proud of himself. Though his immediate post run comment was that for his next event he’d like to try a kids quiz show as running is pretty hard work ;)

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School days

28 Feb

So we’re a month into the school year. So hard to believe. I still struggle to get my head around the fact that my gorgeous little Bean is now a SCHOOL BOY. He is so small for his age (even though one of the oldest in the class!) and he just looks like he’s wearing someone’s dress ups in his school uniform.

But on a very, very positive note, he is thriving at school. He is loving the routine, enjoying all the specialist classes and most importantly for him, has totally sussed out the school canteen. He has been enjoying his icy poles on canteen days and he has been badgering me for a lunch order since pretty much the first week there ;-). He’s going to finally get one tomorrow, but sadly there ain’t really much on the menu for my allergy ridden boys.

Someone suggested I take up the canteen menu with the school and get them to work on making it a little healthier and wider ranged. I thought about it. Truly. But then I thought all they are going to think is: You? Again? So far this year, I’ve already had a long SSG for S involving his teacher, aides and the AP,and spoken to the whole teaching staff at their most recent staff meeting about S’s goals for independence and how they need to back off a bit when he’s in the school yard. I have to repeat the talk with the support staff next week because apparently some don’t really believe I want them to back off and need to hear it in person…

I will also need to plan an SSG for M sometime soon and I’ve also formed something of an alliance with some other mums of kids on the autism spectrum starting at the school this year. We’re looking at consulting with the school on ways to best help the kids on the spectrum in the school yard.

The school is super supportive. I love it. But I really don’t want to be the one who’s in their face every 15 minutes saying, hey, why don’t you do something different about this. But I would really love it if someone’s mum or dad got onto the school canteen about adding a bit more of a range of food on their for those with allergies. Just not me (well, not yet anyway!).

Back to the school yard business with M – I’d say the social aspect of school is the biggest challenge for him (which doesn’t surprise me much). He’s been cluey enough to find a ‘safe’ place where he’s happy to hang out at break times. In the sandpit. Which is fine by me and I think very clever of him. It’s a place where he can play on his own and also interact as he wishes with those who are playing around him. I would truly like for him to get out there a bit and be more socially proactive, but he’s happy, and that is all that counts. And I just hope that once he’s more comfortable at school he might gather that confidence and desire to hang out and make buddies.

He’s often tired at the end of the day and we’ve had our fair share of meltdowns either before school or after school when he’s just filled his cup that little too much and can’t keep a lid on his frustration. But we’re working on it. He will get there. And we’re getting better as a family at allowing his meltdowns to take place, but not ruin our whole day. They are annoying, frustrating and can be both time consuming and draining, but they aren’t causing the huge strain on us all that they have done in the past.

I am enjoying the reduced hassle of not having to drop M off at kinder and S at school each day and not having all those early intervention appointments to attend – pretty much the first time in 8 years my life hasn’t resolved so heavily around appointments and therapy programs. It’s such a liberating feeling!

There are of course still plenty of appointments to keep me busy – S has been fitted for a new Second Skin in the last week, is back to the psychologist for some new anxiety strategies (more on that another day) and M is still having weekly OT sessions and fortnightly Social skills group sessions. There’s the odd assessment for this and that, and more often than not I am having to do 2 school pick ups because S is still recovering from glandular fever and isn’t lasting the full day very often. And they’ve both been home every Wednesday. Oh and of course I still have the adorable (but challenging 3 year old monster!) A by my side quite a lot aside from the 2 days he’s at child care and the 5 hours of 3 year old kinder which he’s doing and loving very much. But honestly, in comparison to years gone by, this is just EASY. And it’s so lovely being able to keep tabs on all that I have going on because there isn’t too much of it like there’s always been in the past. I haven’t missed a single appointment this year yet! ;-).

So I’ve been finding time to get in more runs, swims and cycles (so enjoying my newest little passion for mini triathlons – emphasis on the mini there!). I’m signed up for a half marathon in July and I’ve also started doing yoga again for the first time in about 10 years. LOVING it. Down the track this year I am hoping to make a one day a week return to work (either examining or teaching, whichever comes up first) and I am enjoying (though don’t tell my husband I’ve admitted it!) being able to (mostly) keep a clean home and have meals prepared, cakes baked and dishes done. I’ve even been able to file paperwork and sort through emails and photos. All, quite a novelty really!

And I’m really, really hoping to have more time to blog and to write in general. I’ve missed having the time, energy and motivation to put pen to paper (or fingers to keyboard!). Yep, it’s going to be my year. And I’m loving it.

 

 

 

Summer holidays wrap up

28 Jan

Our Summer holidays have been very, very low key this year. 2012 was just such an overwhelmingly busy year for our family that what we needed for our Summer holidays was a lot of time doing not very much.

This has been particularly important for S. We found out at the end of last year that the reason for his ongoing fatigue issues had nothing to do with CP, but rather that he has had glandular fever (mono). That kid needs a break. Allergies, severe hay fever, eczema. Like he doesn’t have enough challenges…given all that he’s had going in, his high achievements last year are pretty impressive!

M also had good reason to be tired – 2012 saw him doing weekly speech therapy, occupational therapy, social skills group, school readiness group, swimming, yoga and of course kindergarten. I am not saying he did too much last year. The gains he has made in all areas of his development have been amazing and I am so proud of him. He’s a confident, caring, much calmer boy who is so ready to start school.

And for my poor little A – being dragged along to all of the above was pretty exhausting too!

And I know how he feels. I usually try and fill school holidays with lots of outings and adventures. But this time around all I have wanted to do is hang out at home and luckily the boys have felt the same way.

That’s not to say we haven’t left the house at all! A few of our out and about highlights for the hols include a fun weekend at a friend’s beautiful beach house, complete with steam train and ferry ride home; lovely Christmas with extended family;  New years eve fireworks in the city; Giggle and Hoot live in concert,  including a meet and greet with Jimmy Giggle afterwards (I won a radio comp!); birthday fun at the zoo with our beautiful “baby” A – now 3 years old, eek!); some lovely park play date catch ups with friends and of course a few train rides!

For me, there’s also been a couple of super fun fun-runs and my first ever (mini)Triathlon which was a great laugh (though much harder then I had imagined!).

At home there’s been a lot of time playing in the garden made even more special by the brilliant back deck that my super clever husband has been building all Summer and a fun new paddling pool. There has also been a probably excessive number of hours spent on iPads and computers and a lot of fun had with our new Just Dance game on the Wii (we are all great at Gangnam style moves now ;)). The fun run at our house that S organised was a huge success with my sister and her kids and another friend coming over for a lovely morning of garden runs, obstacle courses and laughs.

Kids have enjoyed making their own movie trailers with the great iMovie app and I have loved working my way through the brilliant Breaking Bad series on DVD (now half way through series 3) and also lots of reading – currently half way through Sweet Tooth (latest novel from Ian McKewan). Also finally read and loved the Hunger Games series and Freedom by Jonathan Franzen.

I should add that the reason I’ve had time to do anything these hols is that my brother in law is visiting from Indonesia. Young and with lots of energy, the kids have loved having him around. (Me too ;)).

School starts on Thursday. I am both excited and nervous. Excited for M to be starting school and for S to be heading into grade 2. But I am worried about how S’ s energy levels are going to hold up and about how M is going to cope with the big adjustment to being a school boy. A is also starting 3 year old kinder – which I feel confident he is going to love but do worry just a little he may be rather young in the group.

For me, I have big plans for the year. My first half marathon in July, trail running and also more triathlons. I am also starting the year doing a round of Michelle Bridges 12wbt,  with the goal of kick starting my year in a healthy direction. I am also going to join a gym for the first time. So yep – planning on this year having a lot to do with my health and fitness. After years of thinking that is a selfish goal, I have realised it’s actually what I need to do FOR my family as much as for myself. I am also hoping to do a little more work this year. I look forward to that mental stimulation and the way it will ease our financial stress a little.

2013 is definitely going to be my first year in a while that doesn’t revolve around therapists and appointments and early intervention. There will still be a little of that. Two kids with additional needs makes that a given! But I really hope that this year the balance will well and truly swing back into some sort of less frantic normality where we can focus more on enjoying life and each other. Bring it on 2013!!

(Ps posting from new phone. Pics to come later) :)

Running in the family

14 Jan

Running has become a big part of my life. It’s my release from stress and anxiety and I am enjoying becoming fitter and stronger. It’s nice to have an interest that’s good for me as well as being fun. This year I am going to attempt my first (mini!) triathlon and half marathon and hope to take part in quite a few running events with good friends. The post run brunches are my favourite part of it all!
And whilst the boys don’t come on my runs, it seems they’ve been drawn into my love of running. When I got home from a short run today S informed me that he’s holding a fun run at our house and asked me to send the following invitation (that he’d written all on his own on the iPad) to my good friend and running buddy Christine. It really made me smile :)
Hi christine I am going to have a running Event it call the Big east run it is on Saturday 19 of jan there are 3 challenges 1 around the play set and the trampoline 2 around the whole back garden 3 around the whole house The Limet is 50 laps and We look fored to seeing you
From S

Mum

10 Jan

It was 24 years ago today (early this morning actually) that I woke up thinking something was amiss in the house and discovered that my mum had passed away suddenly from a cerebral aneurysm. She was 41, the same age I am now.

It’s weird, totally weird to think that in less than 12 months I will be older than my own mother. I went through a lot of anxiety about this last year – convinced that it was impossible that could even happen. I have been getting some counselling and have pretty much worked through that one and now I am just left again with that gaping chasm that is always there when you’re a motherless daughter.

I am blessed with a wonderful family and beautiful children and I think I have a pretty good life. I think I learnt to be strong early on – not having a mother for your whole adult life forces you do grow up pretty resilient.

The loss of my mother remains incomparable in terms of both shock and sorrow to anything that has ever happened to me in my life – including the terrible trauma of Satria’s birth. Because despite it all, despite everything that happened that day and has followed, he has LIVED. We are wonderfully and blissfully blessed with him in our lives every day.

Grief does strange things – catches you unawares when you least expect it, makes you cry and laugh and get angry at the world – but it also does heal you a little bit with every wave. Of course I will miss my mum for the rest of my life and wish so so much she was still here, but I reflect so much more on her life rather than her death these days and I am looking forward with excitement to my number one project of 2013 which is to compile a blog about her, gathering photos and anecdotes and memories from friends and family. I already know that blogging is an amazing therapeutic tool, but even more than that if I can put together a worthy record of my mum’s life then she will live on in a more real way to me AND to her grandchildren, who all occasionally ask questions about grandma Penny and who deserve to get to know her better.

This day where I am feeling sad will pass and I look forward with energy and enthusiasm to tomorrow where I slowly start to bring her back to life.

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