Yellow Azalea

Last Saturday I was delighted to attend one day of the Creative Adventure Downunder weekend held in Auckland, hosted and run by Michele Widdows. I had a lovely day, meeting up with scrappy friends from through the years and was lucky to be sitting next to Ann, Hazel and Fiona who I have met through this amazing hobby. My scrappy bestie Carol, could not make this event which was a bummer, but I have never really had a problem rocking up to an event on my own. If I don’t end up sitting next to someone I already know, then by the end of the day, I may have made a new friend.

I started scrapbooking back in 2004, when Mitchell was still in Starship Hospital and 16 years later I still love this hobby. Yolande Fenneman, one of our tutors on Saturday started out her class by saying that she had been scrapbooking for 20 years and while she hasn’t been teaching this hobby over the last 10 years it’s still remained a big part of her life. She was, I believe at the first ever Scrap Camp weekend I went to many years ago. Back then, I was an event newbie, and had heard about scrap camp through Lianne Gray and had no idea how that weekend would be the first of many girls scrappy weekends that I would attend.

Anyway, back to the present, it was a different day, with Yolande being the only NZ teacher able to present face to face due to Covid-19 border restrictions still in place. The international tutors, Aida Domisiewicz and Tina Ollet’s classes were delivered via the big screen. Like so many things this year, we adapted and while it would have been awesome to have these girls here for real, the layouts we got to do were fun.

First up, Yolande’s class was a 4 page interactive layout – this was designed to be a flip open page – but I have just used the general idea to make one double layout. Her page was designed to appeal to those wanting to do a masculine or travel theme, and I chose to use photos from a trip to Melbourne with Holly at the end of 2018. I will use the interactive page idea for another layout, but when I do classes, I like to use photos ‘on the day’ to make sure that my page is relevant to me. This way I can adapt my title and photo orientation to suit. Yolande’s page 1 had one main photo (I have two) and I changed up the title from a cutout of Adventure to a cut out of EPIC.

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We then did a class by Aida, who comes from Poland. The two pages featured small black and white photos of her as a child (about 3 x 4″), plus a lot of dimensional work. Again, I chose to recreate my layouts to suit different sized photos, and also decided to leave some of the dimensional elements off the page as I wanted to put mine in an album, rather than in a frame. As the pages had red, black and white tones, I went with photos in these colourways.

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Lastly, we had a class with Tina Ollet from Australia. This was a single page and featured 3 small photos, which I altered to one 6 x 4, and one 4 x 4. Again, this one is photos from the Melbourne trip, and are photos of Holly at Auckland Airport the morning we left, showing off her newly dyed hair.

That was my day’s work, plus there was a lot of catching up with people, and now I look forward to the next event in mid November. It was a big day, starting at 9 am and finishing at 6.30 pm.

Yesterday, Auckland returned to Alert Level 1 in our Unite Against Covid-19 programme. It’s still not quite life as we knew it, the borders remain closed and we still need to be vigilant wearing masks, washing our hands and looking out for our more vulnerable members of society. Phil and I still have our jobs right now, but others we know have lost their incomes and with the wage subsidies offered by the government now finished the unemployment here in New Zealand is growing to numbers higher than we have seen for a long time. However, I am grateful to live here in New Zealand, as we see Covid-19 ravaging the world – total deaths world wide are now over 1 million and more than 36 million active cases. The last 2 days we have had no community transmission, and 39 active cases remain, which are all imported and in quarantine.

At home, we are still feeling the effects of Covid-19 on our home care support team. It is imperative that Mitchell’s care workers don’t come to work with any signs of coughs and colds, and this has meant more absenteeism over the past months. Tonight, Phil and I are sharing the awake night shift as Angela has taken a week off for the school holidays, and while I have been busy recruiting a couple more people I didn’t manage to get those across the line for this week. At least, we are now able to use some of our individualised funding towards paying ourselves.

Like all initiatives however, there are barriers to access funding to pay a family member, e.g myself. In our case, the majority of Mitchell’s funding comes from the local District Health Board (DHB), and only a small amount comes from the Disability Support Service (DSS). Current criteria is that only funding from DSS can be used to pay family members for those with Very High Needs and that not more than 40 hours per week can be paid. I also can not be both an agent and employee, so to pay myself I will have to change over everyone’s employment agreement into Phil’s name (even though I will still be the one managing this). Isn’t it ironic?

I should clarify that my aim is to have support workers for Mitchell, so we can be parents first and caregivers second. I make this distinction because the reason we need support over and above being a parent is that the care required is 24/7 and it is physically and emotionally impossible to provide this ourselves. Over this last 6 months, with restricted access to support workers/caregivers it has highlighted that it is unmanageable to sustain care at home without intensive support. The daily supervision, therapy, need for assistance with self cares, medications and issues with communication and behaviour make the need for continuous one on one support non-negotiable. When you are the parent and caregiver all in one, the level of hyper vigilance needed is relentless and overwhelming.

Currently, there is a 40 hour cap on payment to parents (as caregivers) and I believe the reason this was implemented was to protect parents from working more than this. In the ideal world, of course, the parent as caregiver, would not work more than 40 hours per week – isn’t this what the generations past fought for? The anomaly is, that when we can’t access support workers and have to be the caregiver for the 168 hours in the week, while we can’t be paid, we are still doing the work. We don’t knock off after 8 hours working Monday to Friday, we carry on as a parent – into the nights and over the weekend. All the time, trying to carry on looking after our other children, partners, ourselves, our ‘real’ income paying jobs and fighting to be heard by the government that this can’t continue.

Enough of all that, it’s now 4.24 am and it won’t be long before Mitchell wakes up, so I’m off to sterlise syringes and wash the living room floor while I can. The good news is that it spring is here and the cherry blossoms are in full force. I love this season.

Take care.

Cherie x