On Getting Out

By | #teammikaere | No Comments

Getting out can be a huge faff. Sometimes we don’t manage it at all and Mikaere can spend days inside without leaving. Part of that is we have a limited amount of awake time to work with, which can be taken up by therapy. Sometimes he’s not up for it, sometimes there is too much going on and his nurse isn’t confident enough it take him out without us, and sometimes it’s just too dang hard to manage.

Which is just, a bit shit. It’s a bit shit. Cue Mama guilt because I really want to manage this, so he can go outside and enjoy not being in the same space for days on end. Life has gotten significantly harder now Mikaere isn’t a small, portable wee toddler. There’s a lot of prep work trying to figure out if a place has accessible paths or accessible door frames or step free access. Are we going to be out long enough that he’ll need changing? Is there a changing places facility where we can change him? It feels like a constant negotiation with the world, and a fight with the emotional/mental effort capacity that we have.

But is also means when we finally do go out (often somewhere local and accessible that we know) it feels like a win. It feels like a HUGE win! Because we want him to be able to enjoy all the things. But also, I hate that it’s like this. I hate that it’s hard.

Anyway. We made it out. We fed the birds leftover bread and hoofuckingrah! We did it!

On inaccessible Playgrounds

By | #teammikaere | No Comments

Todays adventure: we spent this morning at @wwtlondon. Their playground isn’t even remotely disabled child friendly or accessible – disabled kids like to play too, you know (though we got a bit fast and loose, pulling Mikaere out of his buggy and onto a mat so he could go down the slide). Also, there was no changing places facility (which 🙄😭).

Still, it was nice to be outside. We listened to the wind in the reeds and sound of the ducks, he held his hand out and got splashed in the splash pad.

We did our best to make it work, is what I’m saying. We made it out, we’re adventuring!

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#inaccessiblePlayground#ableism#disabledKidsWantToPlayToo

On Sensory Activities… with HATS

By | #teammikaere | No Comments

Following up on yesterdays sensory win, here we are today with HATS! (Yes, we’re all very fancy. It’s not like we don’t have an entire room full with expensive sensory equipment 🙄).

But you know what? Mikaere loved this morning. Dressing up with beads and hats and “kings shawl”, looking in the mirror, us making a big fuss – it was magic with many smiles and lots of delight.

Physio is not fun. Being forced into positions and moved about and not having a choice in what is happening to your body – that is not fun. Stretches can hurt, and Mikaere isn’t able to negotiate or talk back or even say that hurts, I’ve had enough, or any of those things you and I have the option to say. There’s no autonomy for him. No independence. We watch him closely to try read his body language and facial expressions, but that’s not the same. It’s not even always accurate (could you imagine getting through the day just communicating with facial expressions? How well would you be understood, do you think?)

And so we try to make physio fun. We try. It’s not always successful. He’s not always keen to have bells shaken in his face, or bang the drums or whatever. It was nice today to change it up, to do something different and joyful.

And I forget that it doesn’t have to be fancy. Some beads, an old hat, a piece of large fabric and a mirror, that’s what worked today.

So, hurrah for hats! What magic sensory tricks are you guys using right now? Share your tips and tricks with me, so I can try them with Mikaere?

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#physio#sensoryPlay#hats

On Sensory Activities

By | #teammikaere | No Comments

We’re leaning hard into easy sensory activities at the moment, Mikaere’s awake time is precious and so we’re always looking for the best way to make an impact (without it being too much of a mission). Sometimes we pair it with therapy, if it makes things more palatable for our boy.

Music, things that smell good, water, spiky things or soft things. Things that taste good – we’re game.

Recently we’ve been exploring marbles on trays, and wet/dry contrasts. Bells and drums, and beans and rice. We’re also in that phase of memory making, best we can.

Share your secrets, parents of disabled kids – what are you doing with your kiddos right now?? Got any good sensory activities to share?

#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#sensoryActivities#disabledKids#yupTryingReels

Mikaere in his wheelchair, laughing

On Breaking Up with Joseph’s Goal

By | #teammikaere | No Comments

Mikaere in his wheelchair, laughing

I didn’t want to write this, really. I was kind of hoping that it would somehow, magically resolve itself, but that hasn’t happened. I said in my last post we’d broken up with Joseph’s Goal. It’s not something we wanted or expected, but when you’re so invested with a charity, there are a few basic expectations:

  1. They use any funds donated responsibly, in a manner that supports the shared goal
  2. They are respectful and kind to donors, beneficiaries and others, at all times.

Those two (and more!) are laid about pretty clearly in the documentation set by The Fundraising Regulator, the body that regulates charities in the UK. In fact, in their Code of Fundraising Practice (the standards to which charities are expected to behave). Clause 1.1.2 (general behaviour when fundraising) is “you must be polite to people at all times.” (Clause 1.1.1, the first clause, is that your fundraising must be legal).

In short, Joseph’s Goal wasn’t polite to me, personally. Sam’s Grandma donated a few hundred pounds to Joseph’s Goal, as our NKH preferred charity. We received an email from Alan, the treasurer, asking if we knew about it (this is a standard part of their due diligence process).

What I wasn’t expecting was a response from Emma, one of the founders of Joseph Goal to hit reply all instead of reply, and make fun of my character.

It was shocking, and I felt pretty heartbroken by it. Mostly because I thought we were friends. But even if we weren’t, our community is so small. I was heavily invested in Joseph’s Goal (as a means to support NKH Research) as part of a coping mechanism for my grief. When I’m struggling with how distraught I am that Mikaere has NKH, that he’s in pain or is suffering, that he’s having seizures, or my grief about the future we will never experience, about all the things that are affected by parenting a disabled child, about the world at large that is wildly inaccessible to my kid, my default fix is to fundraise.

I can’t cure NKH. I can’t take away my sons pain. But I can fundraise. I can release another book, I can plan the next fundraiser. I can do that. That is something I can *do*

It’s obviously not the healthiest coping mechanism for grief, but it’s one of the many ways I’m getting through, each to their own.

I was so heavily invested in this charity, because it’s personal, for me. So the shock of being made fun of by Emma was horrific. I actually cried and felt that I’d genuinely lost something precious in that relationship. Turns out all of those feelings were on my side only, but nonetheless, I was gutted.

I emailed a response immediately and waited for a reply, a call. But, radio silence.

So, after talking it out with a few people (because I didn’t want to make an emotional, knee-jerk reaction. Not about this), we, as a family decided to move on from Joseph’s Goal. Part of that is the trust was broken. If we can’t trust the charity to be polite, to not make fun of their donors, then they are not the charity for us. We have a certain level of integrity, and without an apology, or even explanation, we were going to move on.

And I think that’s difficult, because we waited. If Emma had called to apologise and said she was having a shit day and here’s where she stood, we probably would have stayed (that’s how much goodwill we had built up with Joseph’s Goal, how much we had emotionally invested in them).

But, that’s not what happened. After enough radio silence, when it was clear I wasn’t going to get a response from Joseph’s Goal. I posted a message to the UK NKH community, asking if there were any other NKH charities we could support. And because we had been such huge advocates for Joseph’s Goal, I posted Emma’s email, too. I didn’t want to have to explain why we were breaking up with Joseph’s Goal. I didn’t want to have to make excuses or cover for their behaviour. But I also didn’t want to exaggerate anything. Just posting Emma’s email I think was enough. Transparent, without any explicit condemnation. It spoke for itself, really.  The community was split, some in support and some not. Each to their own, no judgement.

I also posted a quick message to my personal FB page, asking that if anyone, through their relationship with us was donating regularly to Josephs Goal, to consider stopping. I felt that if we could no longer in good conscience support JG, then our friends and family who were only donating because of our relationship would want to know. So many people have blindly donated to JG, because we did the due diligence and they trusted us. It felt fair, and if anyone had their own relationship with JG, that was fine, they were welcome to make the decision for themselves.

Then, there was a response from Joseph’s Goal, and it was scathing. It was posted from the Joseph’s Goal account (and not from Emma personally), and it was very defensive and passive-aggressive. The main point for me was there was no apology, and no accountability or responsibility taken for Emma’s actions.

The charity was very clear – Emma’s unprompted email that made derogatory remarks about my character was my fault, not theirs. They felt it was deserved. I very much disagree, but it was illuminating to see where they were coming from. Also, as they had responded on behalf of the *charity* rather than on behalf of just Emma, it was clear there was no reconciliation to be had.

I didn’t feel the need to respond, but truthfully, I felt better. I knew where I stood. It was suggested that we make a formal complaint to the Fundraising Regulator (as we have the grounds to), but I don’t think that’s necessary. I really hope that after this, being called out so publicly, Joseph’s Goal won’t be so blasé or mean to their donors. It costs them future donations to do so (we raised £250,000 for Joseph’s Goal. Their response was both appreciative and dismissive of that achievement, apparently, other families collectively have raised over £1million, which genuinely, is wonderful news. I don’t feel like fundraising is a competition between families, you know? It felt like a weird jab to make).

And so, we have unequivocally broken up with Joseph’s Goal. All royalties from the Eva/Charlie books have been moved away, our monthly donations have stopped. Friends and family have stopped their donations, too.

You’ll have seen that we are in the process of registering our own charity with the charities commission. We’ve formed a board of trustees, have policies and due diligence processes, a bank account. It’s all very exciting.

We don’t plan to compete with Joseph’s Goal (if even such a thing is possible). We won’t be doing coin pots in local stores, or managing a large number of members. We’re really lucky that the charity commission has multiple structures we can choose from, and a foundation means we can be relatively lightweight while still being effective.

Part of our fundraising will be passive (like the Charlie and Eva books), which is to say, projects that raise funds without a lot of ongoing maintenance or effort required. Part of our fundraising will be what we usually do, annual online campaigns (like NKH Awareness Day, Mikaere’s Birthday etc). The occasional event (like the chicken nugget challenge, lol!)

But I imagine a significant portion of our fundraising will come from the Team Mikaere community, from you guys. Because genuinely, the bulk of that £250k was raised? That wasn’t us. It was Inifis, the company Mikaere’s grandad used to work for. It was Bazaarvoice, Sams company, during their b:generous weeks. It was friends doing brass band concerts, or choir concerts, it was the Toddington Methodist Church, who made us charity of the year two years running. It was friends running marathons, and holding cake mornings and climbing mountains and walking the Thames Path and holding pub quizzes and race nights and BBQs. It’s friends donating via benevity, or just quietly donating regularly, every month.

And this is why I am posting so publicly, and so transparently. It’s not to vilify Josephs Goal. It’s because we feel responsible and accountable for all those donations made by our friends and family and loved ones. We have an obligation to ensure that any donation made in Team Mikaere’s name is going to an organisation that is responsible, and respectful. An organisation, that in the very least, doesn’t make fun of their donors behind the scenes.

So we’re breaking up with Josephs Goal.  I’m still really gutted about this, but hey ho. Onwards we go. Watch this space as our new charity is formed, we hope you’re join us on this new adventure! X

————-

For full transparency, I’ve included screenshots, below.

Here is the initial email from Emma, and my response.

Here is the post to NKH UK and the note on my own account:

Here is the response from Joseph’s Goal.

The email Emma mentions is below. It was in response to the (many) emails we got from Josephs Goal, strongly encouraging us to chase friends and family to sign up to the lottery (as shown on in the screenshot of my inbox).

On the Heat

By | #teammikaere | No Comments

Oh this HEAT! London is in a heatwave. We’re doing our best over here (cause increased heat usually means increased seizures) with fans and portable aircon, feets in paddling pools and mist from spray bottles and closing the curtains. It feels like we’re hunkering down, trapped inside (because outside is too hot, it’s just too hot rn). But this little guy is such a champ, he smiled through physio this morning, and is always up for a round of acoustic noise making, or smashing the space foil, or just laughing at his brother. He’s so patient and kind with us, I’m grateful.

We’re trying to make memories, but feeling like we can’t go anywhere is hard (constantly feeling like we’re not doing enough, while also knowing we’re doing the best we can. It’s not a competency thing, it’s a capacity thing). Still, I’m grateful he doesn’t seem to mind, and is happy to make memories at home.

We have some friends who are in tricky places right now, in PICUs and wards all over the country. It’s hard to see their messages, to both despair and love with them, to be overwhelmingly grateful that Mikaere is at home, and in great health and *happy* – I feels wildly unfair that others are in tricky places (while at the same time knowing we’ve been there, and are likely to be there again, at some point). So things right now are tempered, hugging my kids close, wishing I could do more, wishing my capacity was infinite (and equally knowing it’s not). Holding on tight to gratitude, with a bit of memory making on the side.

I guess that’s how this summer is going. How’s your summer shaking out??

On announcing the NKH Charity Cookbook

By | #teammikaere | No Comments

Oh hai! There is MUCH going on (in particular behind the scenes. Spoiler: we broke up with Josephs Goal. More on that later, with full transparency).

In the meantime, I have wanted to make a charity cookbook for AGES. It’s been one of the ideas germinating in the background, particularly as I get more involved with books and Amazon and raising funds. After some positive comments from some in the NKH community, we’re doing it!

We’re asking for people to share their favourite recipes with us, for the charity book. All proceeds go to NKH research and all recipes will be credited to their authors (assuming you want to be credited).

This is open to friends and families, neighbours, therapists, anyone with a connection to the NKH community (oh hai, that’s you!) this is open to anyone, anywhere in the world.

We’re looking to get at least 150-200 recipes, and we’d love love you to share your favourites. You can share your recipes at www.mikaerefoundation.org/fundraiser-nkh-charity-cookbook

You can submit more than one! Please get involved, we can’t do this without you. Can’t wait to see what you share, we’re so excited!

On the Delichon Delta

By | #teammikaere | No Comments

A few months ago we drove down to Fordingbridge to visit Delichon HQ to see if the Delichon Delta might be appropriate for Mikaere. We were having such issues with the Hoggi Bingo, don’t get me wrong, it’s a great supportive chair but for indoors and pavements only. We are not an indoors/pavement only kind of family. So, the hb was ideal for school but rubbish for any of the things we wanted to do. I was wildly unimpressed after losing the flexibility of our old buggy (and generally disillusioned with the world that actively excludes disabled people).

So, we went down to Delichon and put Mikaere in a bunch of different chairs, and had warm feels about the delta. It’s not the special tomato, it doesn’t have the swivel front wheel, and it doesn’t recline BUT that wheelchair doesn’t exist at the size Mikaere needs it. The Delta was a significant improvement on the Hoggi Bingo – it manages grass and dirt and off road hills, it’s good for running and has a bike attachment so we can all ride together. We were pretty pleased, except… it’s expensive (as it should be, it’s a quality piece of kit). But womp. So we got a quote, and went on our merry way. We talked to a handful of charities about funding and crossed our fingers. We borrowed our friends delta for our trip, and was quietly hopeful that we might one day have our own.

Well, thanks to the Elifar Foundation we found out this week they are going to cover the cost in full (!) and Mikaere’s very own Delichon Delta has been ordered!!! We’re very excited about the freedom it will afford us, and the adventures we’ll be able to go on. We’ll see. We’re excited and grateful, watch this space!

On Blackwood Forest

By | #teammikaere | No Comments

A few weekends ago we took a holiday out to a cabin in the English woods. It was an “accessible” cabin, but I imagine it’s accessible for those who can self-transfer, rather than the full spectrum of those who are disabled.

Finding places we can stay is becoming increasingly more difficult (seriously, how hard is it to install a hoist over a profiling bed, and into a bathroom with a shower trolley?) but accessibility rant aside, it was a lovely weekend! Mikaere enjoyed being out and about in the forest, and there were hot tub swims and we ate a silly amount of icecream.

It was a delightful break, and we were stoked to just be in a different place. Mikaere loved it, and had such a great time. I also think there’s something to be said for getting him outside. It’s not always easy at home, so to be able to wheel him out onto the porch which faced a private bit of wood was lovely.

We weren’t able to use his regular chair on the off-road walks (seriously, the hoggi bingo awful for off-pavement) but we managed to borrow an off-road trail chair which was perfect (hurrah delichon delta!)

As Mikaere gets older (and bigger and less portable), it’s clear the world is becoming less accommodating, less accessible. But I’m pleased we managed to do this trip, that we made it work, that we were able to make some beautiful memories. Hurrah for holidays, hey?

PS – More photos over on instagram @teamMikaere

On Charlie + Suzy

By | #teammikaere | No Comments

\Suzy Cato is a legend in the world of children’s programming in New Zealand. I grew up watching her in the 90s, on Suzy’s World. I sing the theme song “it’s our time” to my own kids when we finally get 1-1 time. We watch a lot of her videos with the boys.

So, when she featured Charlie the Crow on her book corner, I was so chuffed and honestly a bit teary.

You can watch Suzy read the Charlie book on YouTube, here:
https://youtu.be/l2D641cBJsA 

Give it a like or leave a comment!

You can get your own copy by searching by “Charlie the Crow” on Amazon (if you’re in NZ, Amazon.com.au works quite well)

It’s been a really hard few weeks, and there’s been lots going on. So to see Suzy feature Charlie, knowing that each copy helps raise funds for NKH Research is huge, and gives us such hope. We’re so grateful, even for the small wins.