Tag

emotional pitfalls

Feb 05
0

On ANOTHER nursery update

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The complex needs panel. Woah. Buddy.  Where do I even start? The local authority is it’s own special maze. After chasing when the panel was (which felt like a mission. Our educational psychologist, the person who is the family contact through this process left. We were allocated a new one, but weren’t told who they were. We weren’t even told the old one had left, and heard through the therapy grape vine. Ironically that’s also how we found out about our new person, who had mentioned someone else about an aspect of our case!)

Anyway, we had a date. Finally. I showed up early, and nervous.

I walked into the panel room with Mikaere. It was a meeting room, with a big square table. There were ten people sitting across the three sides, leaving one side for the two of us. Intimidating af.

They introduced themselves to one, one at a time. There was the panel chair, that days health rep and social rep. Three people from Lovely School (the head teacher, the early years teacher and the head of therapy), and then a mix of other people on the panel (a parent rep, our educational psychologist and a few more people whose names and titles and what they did flew over my head).

It was intimidating, but I’m lucky in that there was a friendly face I knew there, so that was positive.  After a lot of talk about what the current package was, how it wasn’t appropriate for Mikaere was debated (and agreed) there was more discussion about what kind of package *would* be appropriate for us.

Here is what it comes down to:

  • They’re giving us 15 hours (which is split across three hours, five days a week). Knowing that there is no way he’d be able to manage, we’re fine to use, say only 9 hours if we want to. The idea is that we should be able to build up to 15 hours.
  • If he’s not there full time, we shouldn’t rely on the therapy through school, and it should stay with the community team until he is at 15 hours a week.
  • That means that he needs extra funding to cover equipment.
  • Also, they want someone to work with him 1-1. A nurse to cover seizure care + the blended diet.

That was all fine.

What was not fine is that because none of this was sorted before the school year, there is now no space at Lovely School that is suitable for Mikaere.

So we have to wait till NEXT September.

Lovely School has exactly eight spaces in their early years class. If you double that, for the afternoon/morning sessions, that’s sixteen. Total. Sixteen special needs toddlers is all they can accommodate.

Considering there is only one other special needs school in our borough, with a similar allocation, that means there is only 32 special needs toddlers between the ages of 3-5 who get to go to nursery a year in my borough.

WTF.

I spoke the the Head Teacher, who was due to open a second early years class for this academic year, and it was scrapped due to funding and lack of teachers. Ahhhhhhhhh.

This. Our system is so underfunded in the world of the vulnerable and special needs. I don’t know what to do about it. I emailed the director of education standards and inclusion in my borough, who sent back a vague but noncommittal email. I emailed our MP, and our local newspaper, both of which went silent. What else do I do? Where do I take this? Do I go lobby and advocate and make a generally nuisance of myself until someone listens? Till they fund a second class so my son can go to nursery?

The thought makes me tired (and guilty. Like I should be doing everything and more).

It bothers me, because after taking on the fight for getting a package that is SAFE for Mikaere, there is no resource. If he was neurotypical, this wouldn’t be a problem. There are nursery’s left, right and centre offering 15 hour places. But that there are only 32 places in Wandsworth for special needs toddlers… what am I meant to do?

So. I guess we wait till next September, and work with our special needs playgroups until late 2020. I’m not 100% sure how I feel about that.

Jan 31
3

Quality vs Quantity

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There is a particularly grim aspect of palliative care that I’ve been mulling over recently. I genuinely believe that the quality of life Mikaere enjoys is awful.  While he’s often comfortable (daily seizures + vomiting aside…), his quality of life is not even close to what we ourselves enjoy.  When you don’t put the seizures + vomiting aside – his quality of life is downright awful. Today Mikaere screamed after the seizure he had. The kind of scream that really hit you in the chest, that let you know what he was experiencing was painful, and he was desperate for it to stop.

Truth: I think that Mikaere would suffer less if his life was shorter.

Side note: I don’t plan on doing anything to make his life shorter, in anyway shape or form. I am his Mama and my Mama heart can barely comprehend that his life is limited, let alone consider shortening what little precious time we have with him.

But that’s the thing. If he had less days to suffer through, there would be less suffering. I genuinely feel like the longer his life, the more suffering he will experience. While I will never ever wish for his life to end,  I also don’t wish him to suffer, or to live a life of seizures and less. Less everything, less control of his body, less awareness, less freedom and independence and joy.

On the other side, by doing my very best to give Mikaere the best possible quality of life available to him, am I prolonging his life and therefore his suffering?

By doing my very best, am I prolonging his life, dooming him to more suffering?

I feel like I’m between a rock and a hard place. I’ll always want to do the very best I can for him, to comfort and care for him. But I worry by pushing him through all the extra therapy, fighting for more drugs, closer monitoring, fending off every potential downfall, that in trying to alleviate his discomfort the best I can, I’m unintentionally extending his life which is filled with so much suffering and pain.

I don’t think there is an answer here. My mama heart wants to ensure my babies life is as comfortable and happy as I can make it, but logically, asking myself what I’m prolonging, to try look at the macro as well as the micro picture…

The palliative special needs life sucks so hard.

And then I think – neurotypical parents don’t do this. They don’t need to wrangle with the idea that their baby is definitely, 100% going to die. Whether their best parenting is going to cause their child to suffer more seizures, and vomits and painful everythings. That their child is going to suffer because of them.

Again, palliative special needs life sucks so hard.

Update: Here’s where I’ve landed with this – I don’t have an answer, but my Mama heart says I should do everything I can to help him live a better, comfortable and happy life. Sometimes that’s going to mean therapy he screams through, in the hope that long term it pays off (and I know, I’m gambling that there will be a long term). It’s going to mean to more awful drugs that make him vomit and suction catheters down his nose and an untold number of needles and blood tests. But I can’t do anything other than my very best to comfort him, and give him his best shot at life. I think I’m always going to wonder and second guess whether I’ve caused more harm, but hopefully, I’ll also know that I gave my best so he would know he was deeply loved.

Jan 29
0

On please stfu

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This is a rant post, so be warned. I know that other people have problems. I know that their problems are their problems and to them, their problems are huge and big and unwieldy. I know this, and if we are friends and I love you I want to hear about your life and listen and help you (if this what you want) navigate whatever it is you are navigating.

But if we are not friends and you have your problems and you’re passive aggressively complaining because I didn’t immediately bow down to your problems, let’s be clear: there needs to be some perspective for me to relate and empathise to your problems.

Here are the problems I live with everyday: watching my son stop breathing while he seizes, praying he comes out of it and doesn’t change colour and lose all his developmental progress. Fighting to see our neurologist to help with meds to help his seizures, who can’t see us because the nhs is chronically underfunded and the neurodisability service at our hospital is in crisis and doesn’t have any available appointments at all during the next six months. Trying to keep my son from vomiting, so he can keep his meds down and have less seizures (and the washing and comforting and changing that comes with the multiple times a day vomiting). How to manage my son so he can be part of this world (when he can’t see, speak, move or eat independently). Managing our chronic grief because my son has a terminal disorder, is on palliative and hospice care, because his disorder is terminal with no cure or effective treatment.

Problems which I don’t think are problems I, specifically, need to manage or allocate effort to: your phobia of dogs.

Not because I have a fear of dogs (I do not, I love dogs) but because the severity of what we live with day to day is so chronically at the other end of the scale, up there with literally life and death decision making and kids that literally die and suffer, that a phobia, something which has a solid treatment option (even when its hard and requires work and effort) and options to avoid the trigger (again, still hard and requires work and effort), is not even a blip on the scale. Truth, if I could swap our life with NKH and it’s seizures and death and grief for a dog phobia, I would in a heartbeat.

In short I’m in a not-conflict. Because the person who has a phobia of dogs doesn’t know our story (and also doesn’t want to know). And sure, I could probably be more tolerant and kind, but also, catering to strangers not-problems is emotionally draining and my emotional plate is full of already draining things.

Also, just so you know: service/therapy dogs that are certified and trained appropriately aren’t pets.

Also: We don’t even have a dog. I wish we did, though.

Jan 27
1

The Inaugural #TeamMikaere Run

By | #teammikaere | One Comment

I’m super, super late getting this post up, considering it was last September. But, The Run! Capital T, Capital R.  You must have seen the many posts leading up to it, I was all over instagram + facebook, trying to get convince people to run, to volunteer, to donate. It was the first time we’d organised an event that felt this big, that required a proper team of volunteers and tickets and several days prep and it’s own fancy website – and I was so anxious that it go well!

But here’s the thing. We have asked every single person we know for a donation. We saturated our friends and families asking for donations. You know this, if you read our blog posts, because we ask you ALL THE TIME! We know there are only so many times we can go to our loved ones with our hands out. Because you’ve all already donated (and we love you for it) and the way we keep asking, with our desperation close in to our hearts, it’s disparaging.

So now we do events, because it’s more than just putting your hand out and asking. Because events mean our friends can bring their friends (which is reaching people outside our social circle). And because events feel like we’re *doing* something, something more than just posting another fundraising link to our social channels and crossing our fingers. But I’ve never organised a run before. Did you know that runs need Race Directors? And water stops (I literally didn’t, until the morning of our run, until our newly acquired Race Director very gently let me know that I should get *a lot* more water).

But, oh my days, we had 30 runners sign up. 30 people, who had committed to raising £100 each for NKH Research, to join us around the 12km course.  We had a dozen or so volunteers, from manning the water stops, to cheering us on, to follow us around the course and man the bag drop and put out arrows.

You guys…. 12km is not a short distance. I struggled. And in case it’s not clear what I mean by that: I was the very last one across the finish line, and I almost bawled my eyes out as I crossed it.  My son is never going to run. Not a single step, not 12km. NKH has robbed him of that opportunity.

Which meant that every step felt personal. It helped that Sam had pushed him around the course before me, and that one of my nearest and dearest, Breege (who lives the grief and special needs life too) ran alongside with me, letting me feel my feels as I went. This run, this fundraising, it’s personal. This was not ‘just’a another fundraising event (are they ever?)… This run genuinely was about hope. My hope. The hope that one day kids with severe NKH will run. That they’ll take steps independent of support equipment. That they’ll find the joy in independent movement.

I can’t tell you how much I want that for my son. The depths to which I hope and wish, and the overwhelming and shattering grief when the reality is unlikely for him. (Grief… it’s real and hard and we live with it everyday. You know how it is. I’m always bringing my grief to the internet). So, this run was personal for us. We were joined by two other NKH families, which made this run special. It’s always heartening to know we’re not alone. That there are people in our corner who share our life, our grief and our love.

Thank you to everyone who donated. Thank you to everyone who fundraised. Who ran, and volunteered (hi Lucy!) and who showed up to give NKH the finger. We love you, and we’re grateful. So so so grateful.

With matching, raised £12,741.00 – isn’t that a phenomenal amount?! It makes me quite teary. This means so much, so so so much to the world of NKH Research. I’m grateful for the love and persistence with which our runners met their fundraising pledges.

It’s important to me that everyone knows that our valiant fundraising efforts do not disappear into the ether. The funds were donated to Joseph’s Goal (run by Emma + Paul Kendrick, whose son Joe has NKH) and from there (in full) to Prof. Nick Greene at UCL, who is currently the world leader in NKH Research.

Funds like this make a tangible difference in the research that can be done by Nick.  When we met him earlier this year, he said donations like ours have sped up his research by approximately 18 months. That is life changing, when most children with NKH won’t see their first birthday. His team are making progress, which give us hope, something to hang to to.

Through him you give us hope that children with NKH might have a different future.

I also want to take a moment and thank Lou and Sam. Because without their love, and determination (and that cheeky lunchtime pint at our local) this run wouldn’t have happened. We love you guys, for offering help and for saying ‘ yes we can’ to something which felt impossible. We did it!

We’ll be back again next year. Do you fancy joining us?

If running is not your thing, is eating chicken nuggets? Fancy signing up the chicken nugget challenge – it goes down at the end of Feb!  www.teammikaere.com/chicken-nugget-challenge

 

 

Jan 24
1

On a nursery update

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I just got a call from the early years head teacher with an update. Internally, they’ve discussed Mikaere’s case, have gone to the local authority to say the package isn’t right for him and they’ve suggested we appeal to the Complex Needs Panel.

Okay, this blew my mind, because we’re talking about a special needs school, in an early years class of special needs toddlers who have very similar physical and cognitive abilities as Mikaere. What kind of complex needs does my son have that these kids don’t that requires he goes to a special panel?

And then it clicked. He’s on palliative care. That’s why. My son has a terminal disorder, and that’s why we’re jumping through extra hoops. There is no one else in the class who is on palliative. Just us.

So now we’re going to an extra panel, to ask for one to one care in case Mikaere has a seizure at nursery. I worry about this, because the first panel, without us, allocated a package that wasn’t suitable.

Truth: I’m intimidated by a room full of strangers that I don’t know, making decisions about our life. I fear they’re going to say no. That the answer will be no and our Lovely School will feel like they can’t safely provide care for him and we won’t have the opportunity.

I’m scared that in advocating for him I’ve ruined his chance to go to nursery. I wonder if I hadn’t made a fuss, if he would have been alright going five days a week (I don’t think so, but I do wonder). I wonder if I’ve done him a disservice, by fighting for more, for better. For safe care.

Sigh. I don’t know. We’ll see. We wait to hear from the complex needs panel. Another group of people we don’t know, making decisions that will have huge impact on our lives.

Fingers crossed for positive news.

—

PS – If you’re thinking of signing up to the Chicken Nugget Challenge, get involved!  We’re looking for more team members! www.teammikaere.com/chicken-nugget-challenge

Jan 20
1

On the Emotional Struggle

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There was an article I read a while ago, which was shared all over the special needs community. PTSD Helps Parents Keep Their Medically Fragile Children Alive — But At What Cost?

It was validating, I guess, but not super helpful. The main point is that the ongoing strain of the special needs life causes intense stress resulting in PTSD. There was a comparison that treating PTSD in special needs parents was similar to treating it in service members engaged in active combat.

However, the ‘how to deal with stress’ or PTSD advice was low on the ground, or as the article put it: there are ‘financial or logistical barriers’ to carers receiving care.

And I get that. I don’t know when I’m meant to fit in self care in Mikaere’s day (don’t tell me the line about how important it is, because I don’t want to hear it – I already KNOW it. Not knowing how important it is not my problem). Truth: I also don’t have the funds for the care, or the funds needed to pay for a nurse while I go to do whatever it is. Just as a comparison: I have had my hair cut exactly twice this year, both times when I was away without Sam and Kai, that I saved up over MONTHS for. If I can’t manage a haircut while taking care of Mikaere I couldn’t see myself managing regular therapy.

(Side note: I want to clarify that we get couples therapy through our hospice, specifically to tackle bereavement and the special needs life. Our therapist comes to us so we don’t need to worry about care for Mikaere. It’s also paid for by our hospice, which we’re grateful for. But a session every few weeks is helpful when you’re in a safe space and maintaining, but in our life too much happens for us ever to get to the ‘maintaining’ part of things. We’re always tackling the next crisis).

Thing is,  I cycle through the occasional periods of ‘I’m fine, look at me do all the things’ with the debilitating downsides of extreme and chronic grief and depression. I’m going to pause here for a moment, because it feels weird to admit this at large to the internet. But the truth is, children have died. Many children, that we knew and love. My child will one day die, and I don’t know whether that’s soon, or not soon (both realities are inconceivably scary). If you add in the sleep deprivation from around the clock care, and the relentless day-to-day appointments and therapy, I think extreme and chronic grief and depression is an appropriate response.

The thing is, when I’m so down, doing anything other than taking care of Mikaere is tough. (Side note: I will never be so down that I can’t care for my son. He will always get the meds and feeds and care he needs, because idea that his already limited life should be anything less because of my feelings is impossible and will not happen).

I just… I feel like my emotions are raw, just under the surface all the time. It comes with all the shame and guilt and feelings like I should be better at holding it all together. I should be better for Mikaere. (To be clear, again, in case any stranger on the internet feels the need to DM me with their concerns  – his needs always come ahead of mine, because if they don’t he’ll go into a seizure coma and die. Even in my deepest darkest abyss, I’ve will never not be able to take care of him).

You guys… so many children we care about have died. I talk about this all of the time, but I’m really struggling with it. There are big gapping holes in my heart. My child is so disabled and his disorder is terminal – the phrase ‘all is right with the world’ will never again be relevant to me. I’m constantly fighting for the next thing, constantly trying to figure how to get more for Mikaere, how to keep our little ship afloat, keep him happy and healthy. How I’m meant to hold on to the happy when our day to days are so stressful is beyond me.

I’m at a loss. I feel like I basically need to find another outlet for my emotions. I think about the gym. I think about more 1-1 therapy. I think about how we’re a single income family and how I’m meant to find time and money to do these things and the idea of finding time in Mikaere’s schedule and organising care… it seems impossible.

And then I mentioned it to our Homestart Worker. Homestart are charity, and they have a therapist who does pro-bono sessions.  And now I’m set to see a therapist. I’m nervous, not really sure about how it’s going to go. I’m also really nervous about unpacking all the feelings from the last three years that I’ve packed waaaay down so I can get on with my day to day.

I’m scared to stay where I am, in the infeasible present, and I’m scared to start therapy, and facing the giant mess of grief I’m holding tight. I don’t fully understand how people navigate the world of pallative and grief and special needs without crumbling. The last three years have been so brutal. Facing more years seems huge (and idea of not facing more years seems impossibly crushing).

If someone has a magic wand they could wave, that’s the solution I could use right now. (Or you can fundraise/donate towards a cure. I’m shaving my head for NKH research, so yeah. Donations would work too).

 

Jan 15
1

On grief and hearts

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I think it’s pretty clear that I took a break from posting over the last few months or so, Mondays post being the first one in a while. Part of it was there is so much shallow influencer content flooding my social feeds. Highlight reels, objectifying consumerism or cute photos of kids in exchange for more more likes and more followers and free gifts with hastag-ad. It was the season, right? Matching pjs all round?

Truthfully – I really struggle with that kind of privilege. It’s difficult to watch when kids we know are dying (literally, in intensive care and funerals). I needed the social media break, because when you’re faced with literal death, when there is child after child who gains their angel wings I can’t care about someone else’s need for vanity metrics.

Side note: if a grid with a beautiful aesthetic and #sparkJoy hashtags are your jam, that’s cool and I’m happy for you. Different courses for horses and what not. There is no justifications or apologies to anyone required, you do you.

But for me? When faced with frequent death and grief, I want to see authenticity, and real, genuine moments that connect. Things that are meaningful, and matter and bring *real* joy (and not someone exploiting their kids for free kit with shallow, carefree #blessed captions. There’s a difference between reading about a child reach a milestone they’ve been working towards for months and months and months, and a posed kid atop someones shoulders with a #love hashtag).

I recognise that I’m in my own unique little place though. The grief has been relentless and never ending. It could be that we live exposed to the world of paediatric palliative care. That the people who bring us the most comfort are the people in our tribe. The people who live our lives, who understand exactly the kind of emotional hardship we’re in.

They’re also the people with children who are destined to gain their wings early. And as much as all our professionals keep suggesting we ‘step back’, I don’t think they understand. We can’t stop going to therapy, to playgroups, to hospital waiting rooms or to hospice. There is no ‘stepping back’ from our life. Hey ho. We take the love and the support and the connection from people who get it, and the price is that we love their kids, and we’re there, in shared grief when they pass. And they’ll be there for us too, one day. When it’s our turn.

There’s this thing I do now. I ask how people’s hearts are. It’s an invitation to share their emotional state, and it’s an offbeat enough question that you don’t get ‘fine/okay’ platitudes as a response. And despite what our professionals suggest, I do genuinely want to know how people are. I want to know if they’re happy, I want to know if they’re struggling, I want to know how they are. Their day to day truths, if they’re open to sharing.

Partly it’s because I love them, but a lot of is because people have stopped talking to me about the hard things in their lives. Or the positive things. Their kids first day at nursery, or a milestone they’ve hit People don’t feel like they can share because their joys might be insensitive, or complain because they compare their hardship to mine and as a perspective it sometimes trivialises their hardships. But just because my life is hard doesn’t change their hardships, or their difficulty or their joy.

And when people stop sharing their life with me, suddenly everyone I know has lovely picture perfect, shallow lives that are just fine. Everyone is living their most perfect highlight reels. Which is great, but without that camaraderie that happens when people share their reality with you, I’m isolated and alone without any real genuine interaction and connection.

At Mikaere’s playgroup, after we sing the hello song, they encourage him to hit a switch that plays a recorded message. The message that comes out is always “I’m fine” – bright and cheery and so awfully inauthentic. And I hear that, when I ask someone how they are. They always say ‘I’m fine’ with that awful and fake tone. If someone is diverting conversation, that’s okay, I would never challenge it (because respecting boundaries is important!) but I like conversation that forms connection. It doesn’t have to be deep and meaningful, but I’d like it to at least be real.

Part of it also is that if I’m asking about someone else, I’m not talking about my life, or Mikaere’s health difficulties (if we get into that, no matter how matter-of-fact I say it, our day to day is horrific and out of the ordinary. Social etiquette requires the only polite response is to acknowledge it and express sadness, which usually comes with pity and discomfort. At that point I’m comforting them. That’s not a nice social connection, but it’s one I’m playing out over and over and over again).

Talking about their heart, their joys and fears and the small things that they care about, it makes me feel less… alone, less banished to the special needs world.

So. How’s your heart?

Jan 02
0

Hello 2020

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Another New Year, here we are! We did it! Another year! It’s a tricky one, New Years. I feel like I want to pause, and I’m not really ready to roll forward into 2020.

Truth is – I’m scared about what this year will hold. Will 2020 be the year Mikaere dies? Will it be fraught with hospital admissions, and seizures and pain? Will it be the year we see a slow deterioration? Will it be the year I peer into his crib after the sat’s monitor has gone off, and he’s passed?

I’m in that space, the nervous and anxious anticipation of what I’ve been so brutally primed for. This fear, it holds me tight.  I’m in a holding pattern, really.  Waiting. It doesn’t matter how much I put on a brave face, or how grateful I am or how much I live in the present. One day my son will die and there is literally nothing I can do to stop it (bar fundraising, which feels like crossing my fingers and hoping – but I’m holding on to that hope, gripping it tightly in my hot little hands, scared to let go, hoping for a miracle).

Looking  back at 2019:

Mikaere celebrated his third birthday this year, for which we’re grateful. His head holding has really come along, and he’s as cheeky as ever. He loves the drums and singing and company. Bubbles and banana yoghurt are wins, spaghetti bolognese and tummy time he does not love. He is very very chatty when happy. Mikaere is very wriggly and the king of 2 minute power naps. We also took Mikaere Ice Skating and he stayed a whole week on respite at hospice with his Grandparents.

Therapy still remains a huge part of his day to day, with 11 different regular sessions (Physio, OT, ABM, Yoga, Hydrotherapy/Splash, Vision, SALT, Portage Play Therapy, Osteo) and weekly visits to Small Steps + the Vision Sensory Playgroup. We hope to add hippotherapy in the new year!

He’s had 556 Seizures (and managed a whole 8 days seizure free!!), 228 vomits + has night nurses 3-4 nights a week. We’ve managed a whole year with NO hospital admissions (woohoo!) + only ONE A&E visit! He’s had over 400 therapy/medical appointments across 8 different centres with a combined team of 30 different professionals.

Fundraising wise we’ve had a great year. We raised over £40k for NKH Research in 2019 – bringing our all time total up to over £143k – a phenomenal amount that gives us hope. Thank you to everyone who donated, organised and attended our events and fundraisers. We love you!

It’s huge to know how many people have run marathons (or 12kms!) and cycled, and drank wine or painted art or had a drink or hosted a games night or bake sale or or or (I could go on).

Looking forward to 2020:

If I’m being truly hopeful, what I’d like is for Mikaere to be in a clinical trial for NKH Gene Replacement Therapy (please universe, line up all the dots and fast track it through. Please make it happen). And while that is what my heart is pleading for, a future with my son where he doesn’t suffer, I’m realistic enough to know that instead, I hope for happiness for Mikaere. For a year with less seizures, more development, and more joy. More happy smiles, more cuddles and more belly laughs. That he’ll become more mobile, and ever so slightly more independent.

We’ll see. Please be kind to us, 2020.

Oct 25
0

On making the boot work

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Fuck. I was putting Mikaere into his car seat when I felt his gastrostomy button pop out of his stoma. I heard his stomach contents dribble out and – fuck – was my first thought.

It was raining. It was just me and Kai and we were in the back streets of an unfamiliar suburb. I did a quick search, and sure enough, the nearest changing places facility (basically, a public toilet with a changing bench bigger than a baby changing table) is just over 15 miles away. Blah.

Mikaere’s button pops out all the time, and usually it’s no big deal. But we’re 40 minutes from home and I know he can’t have the button out for that long without it beginning to close. (Considering it was surgery to put it in, closing is not an option).

So, I do what I always do when I’m in a tight spot, which is move him to the boot of the car and take care of it. So I do, changing him, deflating the button and putting it back in with the gear we carry around with us in the emergency bag.

But I think how undignified for him. How cold and uncomfortable and just – not ideal for all of this to take place in the boot of my car, with the door pulled low to keep out the rain.

But the thing is, there aren’t enough safe places around where I could change him. Places with a long enough changing table to make it safe. Baby changing tables are everywhere, but they’re too short for him.

As I change him out of his vomity clothes, I think how awful that the quick, easy solution is here. Where anyone can walk by, where the breeze is cold.

I hate this. I hate that this is our life. The special needs life is just awful. I’m glad it was quick, but I wish we had the facilities nearby to manage without resorting to the boot of the car.

Also, as he gets bigger, the boot of the car isn’t going to cut it. What are we going to do then?!

Oct 14
0

On Fighting for Nursery

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Well blow me over with a feather. After that initial post on nursery, I got a call from the early years teacher at Lovely School.

Here is what she said:

  • the offered package is not right for Mikaere. They can see that, and yes, it’s very clear to them that it wouldn’t be appropriate to put him in that package.
  • There aren’t very many children like Mikaere who have come in to Lovely School (I took this to mean: pallative). Focus on quality time has to be paramount to his package, without causing any harm.
  • They had an internal meeting and agreed, that they should go back to the council and advocate for Mikaere and other kids like him.

Ahhhh. I literally cried, big fat tears rolling down my cheeks. I had been HEARD! It’s so so rare that I’m heard, that what I say is given weight and considered.

I guess it helped that I piled them with paperwork and evidence before they left. With emergency care plans and seizure plans and symptom care plans and respiratory care plans. With his ambulance directive and his cheat sheets and medication lists and schedules and doctor contact lists. I saw that they were a bit shocked at the sheer amount of paperwork in our emergency kit (it’s the stuff we take everywhere with us). Apparently not all parents provide folders of paperwork at the first meeting.  But if they want a full picture of his needs, they need all of this. I’m grateful that I had documentation to support my previous concerns. Would they have listened to me if I hadn’t provided them?

Still, what matters is that I was heard. That’s huge.

Also, the relief that someone else was going to do the fighting was huge. I don’t have to gear up to go fight the immovable bureaucratic council and explain why my boy is more than a budget item.

I mean, I absolutely will if I have to, but I’m already fighting so many other services and it’s hard constantly being in conflict. I’m running on empty and it’s hard.

That someone else is going to take this on? That’s everything.

When I asked what package they were advocating for, it was more along what I had envisaged, which is a few mornings a week, with a focus on settling into the new space and forming secure relationships with staff and peers. We want him to be happy, and safe, and engaged with play. It would also mean that therapy would be done outside of school, which was a comfort to me.

You guys. The sheer relief at being heard, at not being the one to go into battle, but that Mikaere was still being advocated for was overwhelming. Tears. So many tears. Can all services be like this please? Still. We’re only at the first step. We’ve got a few more months to shift the council’s rigid perspective, Mikaere’s school package hasn’t been agreed as yet. But I’m already in love with Lovely School. They listened, took it on board and are acting accordingly with genuinely what’s right, even if it’s against the grain.

Let’s hope the council can see it too.

I’m so hopeful you guys. Hopeful that something will come together and it won’t be me having to go into battle again. Fingers crossed!