Learning

Not Pudding. Me. It may be a bit of a cliche but Pudding definitely teaches me things.

He is so friendly with everyone he meets, welcoming them with an open heart and no judgement, despite often being on the receiving end of judgemental looks himself. To him, everyone is a potential playmate regardless of age, race, class or any of the other constructs that we use to measure each other against.

Today I took the boys to the playground after ERT – time to get some fresh air after all the medical stuff. When we arrived there were some older girls hanging around so I avoided them and started playing tag with T whilst also trying to make sure Pudding didn’t escape. But within 5 minutes Pudding had zoned in on the others and moved in closer.

I could hear laughter coming from the girls and my Mummy-radar was on high alert. Were they laughing at him or with him? It’s so hard to tell sometimes but I’m getting better at giving strangers the benefit of the doubt. Rather than marching in with suspicious looks, I used some Makaton to him (signalling to them that he is different) and translated what he was saying (‘Found you!’). I then backed off though I desperately wanted to stay and protect him from their potential scorn.

Two minutes later he was having the time of his life with four girls chasing him round the playground whilst they shouted ‘Found you!’, and making him screech with laughter. I was free to sit down and take it easy, smiling at their acceptance of the simple level of play he was capable of.

When they left he cried. And when they came back again a few minutes later they loved his shout of joy.

Pudding’s approach might not always work, but it certainly has more chance of winning hearts than approaching others with suspicion. I’m not sure I’m capable of just walking up to strangers to point at them and shout ‘Found you!’ but his smile is one thing I can learn from and his belief in the kindness of others. Though I definitely can’t carry it off with quite such cuteness!

 

Rare

When you leave your house today, as you go to work or the shops, look around. 1 in 17 people could, at some point, be affected by a rare disease. In Europe that’s defined as one that affects fewer than 1 in 2000 people.

So how do you spot someone with a rare disease? The man jogging past you may need to take daily medications due to Addison Disease; Charcot-Marie-Tooth disease might be the reason that lady is taking a rest on the bench; the child over there may be behaving ‘strangely’ because of his Tuberous Sclerosis. You may even see someone with 3-hydroxy-3-methylglutarylCoA synthase deficiency, though that’s unlikely as there are only 9 reported cases.

The point is that even though some of them are vanishingly rare, rare diseases added up together are more common than you think. But also they are not always easy to spot, unless there are obvious facial features or mobility aids. At some point it could be you, or a friend or a loved one who gets hit with a bewildering diagnosis.

Two years ago I had no idea about World Rare Disease Day. Nowadays though my Facebook feed is pretty different than it used to be; it is populated with pictures of other boys who also have MPS II (Hunter Syndrome), boys who look just like my Pudding. You see, when your child has a rare disease and you find your community, suddenly it doesn’t feel quite as rare. And on this day, we join together to shout a bit louder and raise awareness of these conditions that have limited patient groups and therefore limited understanding and treatments for them.

And today I celebrate rare. Yes, rare can still mean isolation and struggle and difficult times, but to me it also means this gorgeous smile which certainly isn’t rare in our household.

So today, take a few moments to think of us, share this post and show that you too Care about Rare.

Healing for the Soul

I haven’t posted on the blog for nearly 2 weeks. Not the first time that it’s been that long but it does feel a bit weird. Sometimes gaps have been because we’ve been busy. But sometimes it’s because it can be hard to admit to what I’m really thinking.

Hard thing to admit # 1: I’ve been struggling with a low mood lately. If I’m honest with myself, I’d been struggling since Christmas. I’d been so pleased with myself for having things on a relatively even keel after the emotional trauma of diagnosis year that the dip felt like a failure. How could I feel bad when other people have it so much worse? How could I have a lovely time with friends and then weep as I drove away? How could I have so many things on my to do list, yet get home and feel the hopeless inertia take over?

It wasn’t as if anything major was going on, just the ongoing stresses of daily life with Pudding, worries about his future, fears about the new politics of fear and division, inability to sort out other people’s problems. Just the standard cares of the world really. In the end I burst into tears in front of our homecare nurse and admitted that I’d cried every day for the last two weeks.

The world didn’t end when I admitted that “failure”. In fact, just saying the words helped immensely. I don’t have to be ridiculously strong the whole time. Caring for a child with additional needs IS hard. And I am looking into finding a talking therapy and addressing some of the underlying issues that have been worrying me.

Hard thing to admit # 2: I enjoy having time away from Pudding. I have six hours a day of course when they’re at school. But that goes surprisingly quickly when you’re tidying up and doing other routine stuff.

T and I just had a weekend away with my family up North. As soon as we got to the Hotel of Mum and Dad (I wrote about this before), T ran off with his cousins to the other end of the house and I could relax knowing that I didn’t have to be on constant alert. We had a civilised trip on the train to visit more family and eat lots of lovely food. A lovely time for relaxation.

And the highlight for me was a trip to the beach. As I emerged from the dunes on a beautiful spring morning my soul opened wide and drank in the sand, the sun and the endless sea. ‘I’ve missed this!’ I shouted. I meandered along, picking up shells, while the others kicked ball and ran down sand dunes. The remaining stress ebbed away.

The healing won’t last forever, but it’s helping me get through half term with relatively little shouting and no tears (well, not from me anyway). Maybe the learning point from this is I need to add in a little dose of nature to my routine every so often. Landscape that doesn’t throw things or hit or judge. Landscape that just is, and is beautiful. Healing for the soul.

I didn’t take any pictures on the beach so here are some spring flowers instead.

PS. Dr Google told me that I didn’t have depression, and he was right, but ignoring my own needs could have led to it getting worse. If anyone reading this is struggling themselves, please, go talk to someone – a good friend, GP, whatever. Don’t feel you have to stay strong whatever the cost.

Sleep like a baby?

Having written about emotions last time, I’ve come to realise something (probably fairly obvious) this week. I am so much better at coping with everything when I am well rested.

I’ve had a few late nights recently, and I find it leaves me in such a fragile state of mind. When I’ve slept enough, I can keep things in perspective, write a reasoned blog post and get on with life. When I haven’t, I spend the day with a cloud of impending doom hovering over me and dissolve into tears at the slightest thing. And that can be hard to explain to outsiders. If they notice that I’m not being myself and ask what’s up, I have a choice. I can burst into tears and blurt out and say it’s nothing specific, ‘just everything’. Or I can blame the redness of my eyes on contact lenses that I’ve just put in, and to be honest that’s probably the easiest.

Recently I heard someone mention sleep deprivation after a few late nights. I didn’t comment!

I used to be a ten-hour-a-night girl. I lived in Sister’s house until Niece was a year old, but I would put ear plugs in and sleep undisturbed. When I got together with Hubby he could get up in the morning for his walk to work and I would roll over and sleep longer. If I had a late night, I’d be tired but knew I’d catch up with sleep the next night. I never questioned that luxury.

IMG_7007Then I had my own children. Everyone knows the theory – babies wake up all the time, but you get used to it, and eventually, sooner or later, they sleep through. And the sleep deprivation eases. I bought into that illusion. And yes, it did work with Twiglet. When he moved to a big boy’s bed (aged two and a half) we did have a few broken nights, but on the whole he sleeps like a log.

Pudding on the other hand…

Part of the problem I know is that since becoming a mother I think I simply don’t sleep as well as I used to. There is a small area of the brain that just stays on alert the whole time, listening out for the slightest sound, the slightest hint that your child needs you. And boy, does it get a work-out with Pudding!

Since he was a very young baby, he just hasn’t slept as well as ‘normal’ children. (Something I now know is common in MPS as well as other conditions such as autism) Every night he will wake up, perhaps at 9pm, perhaps at 2am, and have what I can only describe as a party in his cot. He’ll laugh and kick the bars and shout ‘You!’ at the top of his voice. He always sounds happy and goodness knows how he can have so much fun in the dark by himself, but I’m grateful for that at least.

Melatonin has helped. His wake-ups don’t last quite as long now – often more like half an hour rather than two hours. But in different surroundings, such as the hotel room in Manchester or the hospital ward, it can be difficult to persuade him back to bed once he’s awake and decides it’s time to play.

At home he has always been contained in his cot but this can’t continue for ever. With his size and slightly increased flexibility (a benefit from his weekly treatments) there is now the very real possibility that he could climb/fall out. So we need to move him to a bed. We’re currently in the process of clearing out the office so he can have his own room, as Twiglet probably wouldn’t be appreciate being jumped on in the night.

I’ve no idea what is going to happen. Will he stay in bed? Will he spend all night banging on the door to get out?

Wish us luck! And expect some more emotional sleep-fuddled posts from me in the near future….

The ‘new normal’

Last week I was having a conversation with someone about emotions. Of course when Pudding was diagnosed with Hunter Syndrome I went through all of them – anger, guilt, desperation. I was drowning in the strongest emotions that I’d ever felt. When you first hear that your child has a condition that may kill him, your world comes to an end.

But now? When asked how I felt now, I was at a loss. My first reaction was ‘I’m fine.’ I’ve mentioned before the ‘new normal’. It is a phrase used to describe what happens to us after diagnosis. For a while everything is rocked, and then gradually we get used to our new life – it becomes normal.

Yes, on the surface of it I am fine. Life continues with its little triumphs and annoyances. I plan meals, pretend to be a superhero on the school run, tut at clothes left on the floor. Yet that isn’t really the full answer.

mum picHunter Syndrome bubbles along under everything. Even when I think it is all is going along swimmingly, the bumps are only hidden just under the surface. It doesn’t take much to make me wobble. Sometimes just a kind act lets the tears flow. And I know that I may have to get used to a new normal many times.

There are so many worries that beat around my head. Whether I give enough time and attention to Twiglet. Whether the clinical trial will have provable benefits and whether it will be made available as a treatment on the NHS. Whether the next general anesthetic will go well. Whether gene therapy will come in good time. Whether, if Pudding reaches adulthood, there will be the support in place that he is bound to need.

And yet… and yet because of the friendships I have made and the blogs I read I know what other parents have to deal with on a daily basis. We are luckier than many.

So it is sometimes a surprise to me when mums in the playground show amazement at our new normal. A normal that now includes regular prescriptions, weekly treatments, and trips to Manchester children’s hospital every month. And these are things that I am so grateful for, though none of it is ideal.

If I stopped to think about it too much myself, I’d probably be amazed too. And overwhelmed. And when there is shopping to be done, and washing, and a family to care for, overwhelmed would not be a good thing. I just couldn’t live with such heightened emotions for month after month after month. So for now I continue on this new road and try to look out for the bumps on the way. I’m still not entirely in control but hopefully I can steer around the worst of them.

How do I feel? It’s ….complicated.

Time sponges

I always expected that when my children were old enough to go to school, I would start work again. I used to be a therapist, but stopped when Twiglet was six months old. I became a stay-at-home mum and also did childminding for Niece and Nephew. I suppose this has left me with some self-image issues but maybe that’s a whole other post!

Whatever this has meant to me, it’s probably been very useful to us as a family since Pudding’s diagnosis. I can’t think there are many employers who would be understanding about the huge number of absences I would have taken over the last year or so. Even now, I would need to find a Monday-Thursday job where they don’t mind me going to Manchester every four weeks. Oh, and only during school hours in termtime. That’s unless I put the kids into more out of school provision, and I really don’t feel that would be the right decision for Pudding at the moment.

So for now, I’m continuing to do some volunteering on a Monday and stay at home with Pudding on a Friday for his enzyme replacement therapy (ERT). I blithely thought that would leave me three whole school days to finish my novel and get loads of other stuff done.

There are many SEND parents (those who have children with special educational needs and disabilities) out there who have no choice but to work outside the home, and hats off to them.  I’m going to risk saying something I warned against in a previous post – I don’t know how they do it!

I don’t mean this in a ‘Oh my, they’re such amazing human beings’ kind of way. That goes without saying. All mums are – working or non-working, SEND or not. I mean it in a ‘how do they cope with all the time sponges?’ kind of way.

img_6720You know what I mean by time sponges? Those little things that should be simple but seem to take up a ridiculous amount of time. The sort of things like going to put some air in your tyres and then realising that actually there’s a great big nail in one which means you spend the next hour and a half getting it fixed.

We all deal with little frustrations like this (though I admit to a certain amount of huffing last week when the tyre fiasco happened). But when your child is a little bit…different, it seems like the time sponges just multiply.

Time sponges like a simple form that needs to be filled in that has two lines for ‘any health concerns’.

Like all the email arrangements that need to be made for our monthly trips to Manchester – travel, accommodation, who’s picking Twiglet up from school.

Like waiting on hold for an hour to request a lost Disability Living Allowance form.

Like trying to sort out electronic delivery of Pudding’s prescriptions to the pharmacy. An ‘easy service to sign up to’ that required three trips to the GP’s reception when no-one knew how to deal with his complicated medicines on the system.

Sometimes school run rolls around and I can’t believe how little I’ve managed to achieve. The thought of trying to do all this stuff on an evening when the kids are in bed or during a snatched lunch break just defeats me. I reckon the only feasible solution would be to wait for the time machine that Twiglet has promised to invent for me. Until then I’ll just have to get better at multi-tasking. I should probably be doing the cleaning while waiting on hold with someone right now.

PS. I admit it, I don’t always use my time as efficiently as I could. But sometimes a morning of hot chocolate and chat is a sanity saver…

 

Products that I love

This is a post I’ve been meaning to write for ages but never quite got round to. One thing I found when I joined the strange new world of additional needs is that I had no clue what sort of products were available to help us. Not the big equipment sort of things like special needs buggies or high chairs – occupational health and physio have been great with those. But the sort of products that fulfill a need many parents aren’t even aware of. Some of these products were recommended by other parents of disabled children, others I have come across myself. Parents of toddlers may also like them! Sorry about the bad quality photos but still waiting for our camera to be sorted out.

Click on the title for each product to take you through to the company. Mostly these are in the UK, apart from Dr Barman’s which are also available on Amazon, etc. (I’ve not received any freebies or payment for promoting these – purely writing this as I hope that others may benefit too.)

dsc00121Tot seat –  This has been a fairly recent purchase. Pudding doesn’t like staying in one place too long (even during his favourite activity which is eating) but settles down when he is secured in.  He is getting far too big for standard high chairs and meals out had become punctuated by dashes to recapture him. Not ideal, particularly when I was managing him by myself on visits to Manchester. I knew there must be a solution out there somewhere, and found this – a cloth ‘chair’ that fits over every seat that I’ve tried it on and fastens at the back to keep him secure. All the pictures on their website were of it being used by babies or toddlers so I got in touch to ask about whether it would be suitable. The reply came back very quickly explaining that other parents of special needs children had found it useful too. The adjustable straps mean it can fit many different builds, though you do have to be careful not to leave them alone where the child could tip the chair over. I went ahead with the purchase and have not been disappointed. It’s simple to use, very portable and makes eating out so much easier.

dsc00122Dr Barman’s ToothbrushI used to despair of keeping Pudding’s teeth even vaguely clean. If he wasn’t running away, he was chewing the brush and I knew that 20 seconds of brushing wasn’t going to win me any medals from the dentist. A discussion in one of my Facebook groups led to buying this toothbrush. Three heads that can brush all the teeth surfaces at once? Oo, yes please! (I have found that it tends to get a bit gunked up, but combing the bits out seems to work…). Edit – nowadays there seem to be a lot more similar brushes on the market!

dsc00123Safe sip – this works by magic. Ok, ok, I know, that it’s actually something to do with physics. A clever little silicone top that you can stretch over any cup or tumbler. Put in a straw and hey presto! you have a non-spill cup. I didn’t believe it despite a recommendation but it really does work as long as the straw is fully in. Pudding can drink from a normal cup, but has problems with clumsiness or deliberate spilling so this is excellent to have in your bag for emergencies.

dsc00127Go To Bed covers – the duvet cover in this set zips to the bottom sheet which also has an integral pillow case. That way, nothing can be kicked off or lost in the night. Doesn’t work for everyone – as proved by someone I recommended it to – but it’s been great for Pudding. We will probably have to make the transition from cot to bed sometime soon, and I’m hoping that this will make things easier. (Not cheap, and I did try to save money at first by using his existing duvet but he kept kicking it down within the cover. The one they sell poppers into the cover and stays much more secure.) Available in single and cot bed sizes. Edit – we now use the single bed size and continues to be a hit!

ID band dsc00128– Many of you will have gathered by now that Pudding is a bit of an escape artist. I keep a pretty close eye on him when we’re out and about, but do often worry about the ‘what ifs’ of him running off. Another worry is about a medical emergency happening when he is not with me. His key workers know the important things to be aware of, but what if someone else was handing him over to a paramedic? If his IDDD was mistaken for a normal portacath and they tried to access it for bloods, it could be nothing less than disastrous. Both these problems have been sorted by this wrist band. It has the medicalert symbol signifying important medical information. On the reverse there is space to engrave name, contact details and so on. And it looks cool too! (The company have a few different designs – this one had the most space for his complicated medical details.)

So that’s my current list of favourites – if you’ve got any other suggestions, share them in the comments!