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…)

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.

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!

 

Party!

Last week Pudding had a party to go to. One of those ‘Turning 5, and inviting everyone in the class’ sort of parties. I looked forward to it as a great opportunity to see Pudding in a large group of his peers and watch first hand as he interacted with them. It would also be a chance for me to see how he compares to them.

Thankfully, it wasn’t a party where the kids are expected to sit down and watch a magic show or something. I don’t know if I’d have said yes in that case! There was to be a DJ and bouncy castle and I decided that would be ok. (Though there is always the worry that vigorous bouncing or bumps could damage one or both of his portacaths).

The party ended up pretty much as I expected:

One child didn’t join in most of the games.

One child ran off with the parcel when it was their turn at Pass the Parcel

One child clung to their parent the whole time.

One child sat waiting for the food for ages and then had a tantrum when he was told no more crisps.

One child tried to escape out the door several times.

Can you guess which one of those WASN’T my Pudding?! Yes, the clingy one…he did all the others.

I was that helicopter parent who hovered near her child and sat down for a total of about 10 minutes. It was pretty full on! But at the same time it was kind of brilliant.

It was very apparent how much less understanding and compliant he is than his peers. But after only a few weeks of school, the other children in his class obviously accept him and his ways. Some of the boys were encouraging him to join in with one of their games. Another took it very well when Pudding was very much in her face. I saw him join in the Hokey Cokey for the first time ever and he did actually Pass the Parcel once without help. (We’ll gloss over the running away with it!)

As soon as we arrived he did head straight for the bouncy castle, but thankfully realised that he wasn’t keen when lots of other children were on it. When some of the party games and dancing were on though, he had the chance to bounce by himself. And there were balloons to chase and bubbles to pop so he was a very happy boy.

The birthday girl’s parents even took the time to learn the Makaton sign for ‘Thank you’ when we were leaving.

I did chat a bit with another mum while the kids were eating and I would have loved the chance to get to know some of the other parents too. (Because it’s hard to miss Pudding’s difference I’m sure lots of them know me, so I’m at a disadvantage!) However, I don’t really feel like I missed out. Pudding so obviously enjoyed himself that it was a joy to watch.

I’m afraid that sometimes on this blog I may focus on the negative a little too much – it’s easy to get caught up in that. But every so often I think I may be getting the hang of this ‘living in the moment’ thing. I do have a great little teacher…