Fatigue

This may sound like an odd post after my last post was all about S’s brilliant effort at the marathon but S is tired. Ridiculously tired all the time. I am taking him to school at 9.30 most days and picking him up at 1.30 but still, he’s exhausted and his teacher and aides tell me that when he is at school he’s struggling to concentrate and not getting much done. It took him days to recover from our day out at the marathon and whereas he used to use his wheelchair maybe once or twice a week, it’s his preferred choice now pretty much all the time. He has barely used his walker since school went back (thank God for his new wheelchair!!)

I know it’s term 4 so a bit of tiredness is to be expected but he’s so tired at the moment – and therefore more emotional and easily upset – that I am wondering whether we should be just calling it quits on the school year now and staying at home!

He is still battling with skin issues and hay fever and therefore not always getting great sleep and most of the time at the moment he is not his usual chirpy happy self.

It’s awful to watch and frustrating for him. He didn’t go to school yesterday and is taking today off (school aths) and Thursday (teacher strike) and I am just hoping that with all this rest he will be a little recharged. But it’s a long term! So we will just have to see.

Problem with him staying at home from school also is that he often has to tag along to all the therapy and appointments we have going on for M at the moment. So it’s not true rest time.

To be honest, I am exhausted too. Need a break and wishing were just a little closer to those Christmas hols .

Sorry for the whine, but feel better for getting it off my chest!

Marathon effort

Today was the fourth Melbourne marathon event we have taken part in to support the Cerebral Palsy Education Centre which S attends.

The weather was amazing – a beautiful spring day.

I left the house at 5.30 to make it in to the city for my 10km run. It was a fabulous course and I really enjoyed the run. I am finding the distance a little easier now, though I am still yet to sneak below that elusive 55 minute mark!

After the run I walked to the Richmond station to meet the rest of the family – pushing S’s empty adapted trike along with me. Too hard for DH to have 3 kids, a pram and a trike on the train so I had brought the trike in my car. We then walked to the Tennis Centre for a photo with the rest of the CPEC team – amidst a wonderful sea of blue and yellow balloons and streamers. I always get a tad emotional (in a very good way!) seeing all those wheelchairs, trikes, walkers, sticks and all those amazing families who are along for the roller coaster ride of life with a CP connection. And I love that this is an event that is so inclusive and welcoming, challenging all to achieve their best whether that’s walking – either independently or with assistance, running, pedaling, wheeling – or a combination of all of the above!

As always, it was a good chance to catch up with people at haven’t seen for a while, to meet a few new people, including those I have only ‘met’ online and also to see the commitment of the staff from CPEC, many of whom gave up their Sunday to attend.

This year S chose to ride his new adapted trike. And we were blessed that his wonderful physio chose to walk alongside us for much of the 3km. This was so special for S!

He powered along for much of the 3km needing only a little assistance steering now and then and a bit of reining in so he didn’t go downhill too fast .

When we approached the G, he got off his trike (much to M’s pleasure as he was dying for a turn!) and then he walked independently for the last 400m lap of the G (with a stop half way for a photo or 2).

I still remember the first time we took part in this event – I had to coax S across the finish line in his walker with the promise of a chocolate frog . He has come so very far since then and he told me afterwards that the 3 kms wasn’t very long at all.

I love how an event like this brings out the best in my big boy as he strives to do his best. He is always keen to give things a go and doesn’t let much phase him.

M was rather overwhelmed by the crowds and the noise and most excited as we approached the MCG because we walked alongside the train track for a while and saw several passing trains. But before the event, when we were getting the big group photo, he sat next to S, held his hand, helped him get up and walked with him congratulated him after the walk in his great walking and riding. I am also very proud of him for being such a champ about being a part of something which he does find all a bit too much.

It was a beautiful day out with the family and we are lucky to be part of such a wonderful CP community.

A milestone (for me!)

A milestone for me today that I just had to share.

Today is the first day in 8 years that I have not been either pregnant or breast feeding!

It makes me a little sad to wean my boy (Must stop calling him my baby seeing as he will be 3 in January!), but also really excited to be seeing the end of baby days and the beginning of a new era with my 3 big boys who not only look alike (seriously had someone ask me if they were triplets the other day!?!) but who also are developing into great buddies too. I love watching them grow into their sibling roles and look out for each other so much!

A wasn’t too keen on not having booby before bed – until I offered him chocolate milk instead. He was still wavering, until I told him he could make it himself. Apparently a turn with the stick blender and then yummy chocolate milk (the divine Loving Earth drinking chocolate made with Oat milk) wins out over mummy’s milk.

He went to bed without any fuss and Is now sharing the big bottom bunk bed with his brothers – though he is still in my bed most of the time! But that’s OK. One challenge at a time. And I am not quite ready to give up all those delicious night time cuddles just yet

Nb: it’s just occurred to me that it’s really A’s milestone more than mine. Now wracked with the unrelenting mummy guilt of not celebrating my 3rd child as much as I should. Sigh!

New wheels!

After a year (yes a YEAR), we finally got S’s new wheelchair on Monday. Hooray!

I don’t have any pics of his old wheelchair at hand, but it was not much better than a cheap pram. Bits fell off regularly, his feet couldn’t properly reach the footplates and for some bizarre reason the push handles – which couldn’t be adjusted – were at about the right height for a 10 year old.

You may wonder why he had that chair at all – well back when we were looking at a wheelchair for school, I had no idea how often he’d even need a wheelchair. He rarely uses one at home and I figured at school he’d rather be in his walker. So we just went for the easiest cheapest option.

What I hasn’t factored in was just how exhausting he would find school and how much movement around the school grounds would be part of his days. So it has turned out his wheelchair has been pretty well used at school. I felt particular bad for one of his aides who was close to 6 foot tall. I hope back strain wasn’t one of the reasons he eventually moved on!

But it really took over a year of processing, top up funding sourcing, then wheelchair ordering and adjusting for the new wheelchair to actually be ready.

Is it worth the wait?

Absolutely! S loves it. He is so much more comfortable and supported and he loves so much that it’s easier for him to propel the wheelchair himself. He definitely needs lots of practice but for the first time I am seeing that as a possibility for him.

I love that it’s easy to push and maneuvre and it’s brilliantly light and easy to fold down to pop into the back of the car.

S chose the colour. Yellow is his favourite. And it matches his Crocodile walker nicely (also yellow).

If you’d told me 8 years ago that getting a new wheelchair for my child would be a wonderful exciting time I would have probably just burst into tears. Goes to show how far we’ve travelled and how differently we see things now!

Yep, it’s a great week in our house. Lovin’ the new wheels to bits .

Autism in our house

I don’t write much about M being on the autism spectrum. Sometimes I feel bad about that – as though it seems I am not acknowledging it when I spend so much time writing about CP and CP related matters…

But the simple fact is, an autism diagnosis hasn’t been the bombshell that CP entering our world ever was. If anything it’s made life a hell of a lot easier. It’s given us many answers to why M is who he is and allowed us to explore ways of helping him and helped us to understand how he ticks and how we can assist him and us in navigating around the different way he sees the world.

I’ve met quite a few mums recently through the therapies we are accessing for M who are on similar Paths to us. A few of them are still struggling with it all and finding diagnosis and their new reality a little overwhelming.

I feel for them, but I truly haven’t experienced this all the same as them. Partly because the world of early intervention/disability services is already part of our lives and we know how it all works. And as much as I would prefer it if we weren’t having to use the services and learn a lot about a whole different disability, I know M’s issues are a walk in the park both from the autism spectrum perspective and on the disability front in general. And also we are eternally grateful for the wonderful funding that is available for M in these early years. This is allowing us to access some amazing early intervention services which are making a huge difference to him and for us all. We missed out on the similar funding now available for young kids with CP and I can’t believe what a difference it makes to not have the worry and stress of trying to figure out how to pay for much needed therapy and equipment.

This is the last term before M starts school and as such, we are in total overdrive working on his school readiness. It’s so very important that he has a good start to school next year and I don’t want to miss any opportunity to help make that happen! So this term, in addition to his kindergarten sessions, we have speech therapy, social skills group, school readiness group, occupational therapy, swimming lessons… And for me an additional fortnightly parent education session too. And yep, still got lots of stuff going on with S – including a return to PROMPT sessions and a trial of cutting short his school days in an attempt to help beat fatigue. And little A is starting swimming lessons this term too (was going to wait until next year but after the near miss in the pool in Bali it’s become super top priority to get him safe in the water!!).

So all round, it’s going to be a very busy term! Hope there’s going to be time to also plan a Christmas holiday getaway. I think we are all going to need it!!!

A card