Halloween

Tis the season of spooks and sickness bugs, nights drawing in and Halloween.

Hubby is still recovering from the bug that Pudding and I both had so he wasn’t up to coming out with us. It was glorious weather yesterday but sometimes I find it downright scary to take both the boys out by myself. I gritted my teeth and headed off to Lotherton Hall. They always go all out for Halloween there and T was really keen to do the spooky scarecrow trail.

I was all geared up for the more terrifying aspects – stares from other children, chasing Pudding when he makes a bid for freedom, struggling to push the buggy over uneven surfaces, the nightmare of finding a suitable place to change his nappy…

After a morning of losing my temper, shouting and generally being a grumpy Mummy from Hell, I was NOT looking forward to it.

But…

It all went rather well. T was brilliantly helpful pushing the buggy while I chased Pudding, helping me with the lift and generally being patient. We found all the scarecrows. Pudding looked rather fetching in his new hi-vis jacket. I didn’t get any officious persons objecting to us taking the buggy into the house (yes, some people in other places REALLY want to make it difficult). And best of all was the loo!

Normally, I just find a discrete corner out of the way to do a nappy change al fresco – much nicer than lying him down on a toilet floor. But not in this weather. I thought the disabled loo would probably have the best chance of having a large enough, clean enough floor space, so tracked down the key from the cafe.

I opened the door, and was delighted to find a full-sized adult changing bench with hoist above it (not that we need that bit). I simply hadn’t realised that the facilities there were a proper Changing Places toilet – the gold standard for those who can’t use the usual toilet facilities. T didn’t quite share my vocal enthusiasm and chose to wait outside while I changed Pudding in glorious comfort, not having to bend over him on the floor or worry about the hygiene.

Only problem is, I could come to expect this standard, and there simply aren’t enough of them out there….

Surviving

Did you enjoy the holidays? As the beginning of the new school year is upon us I’m looking back on the last five or six weeks and trying to work out the answer to that question.

Pudding running towards camera. His big brother is behind him with hands on his shoulders.I suppose the truth is that I haven’t quite retained the boundless optimism of the beginning of the holidays. I’ve also not sunk back into the hole! But as with many SEND parents (excepting those whose children suffer from anxiety) I’m going to be very grateful for the start of term.

So how did I get on? Here is my full-proof method for surviving the long holidays:

Have lovely friends and family. As I said before, we didn’t book any holiday away. In the first week the boys and I went to stay with Grandma and Grandad. And last week we landed on some super friends in Gloucestershire who gave us the run of their house while they were away. We had very few instructions apart from ‘feed the cats’ and ‘we’re not precious about anything in the house’. In other words, don’t worry too much if Pudding breaks anything! He had a super time, exploring a whole new house and garden and terrorising the cats (hope they’ve recovered) while we could relax

Respite.  We had five 6-hour days when Pudding was looked after by an experienced short breaks worker. I know I’m lucky to get this. Some families don’t. Dealing with a Pudding is exhausting at the best of times, let alone day in, day out for 6 weeks. But I do sometimes wonder if it is just me not being up to the job. So it was with a certain amount of satisfaction that I heard at pick up time ‘Oo, I’m ready for bed now!’ from someone else. These days allowed T and I to get up to adventures that Pudding just couldn’t have joined in – from making natural sculptures in the woods, to a full day out at Lightwater Valley. I found it a really relaxing break and T certainly appreciated not having his fun curtailed by his sibling.

Divide and Rule. Much as I would love to have picture-postcard, perfect family days out where we happily do a range of activities together….. Well, it’s just not possible. Pudding can’t run very far before getting tired, so often needs to go in his buggy. And even then, he complains more these days. So after a bit of an explore somewhere new, perhaps some football, he is ready to leave. There is no bargaining or bribery possible – the promise of an icecream if he waits patiently for a while means nothing to him. Which means that T is often dragged away from whatever he has set his heart on doing. The answer we’ve found, like many SEND families before us, is simply to split up. One parent supervises T, while the other gets the job of pushing the buggy round (or sitting in a cafe!). Not always ideal, but it works in a fashion.

Cut yourself some slack. TV. It’s been on far more than I ever would have thought my kind of parenting would allow. But hey, maybe I’m finally getting better at adjusting my expectations. I may not be a perfect parent, but Pudding doesn’t seem to be complaining. Well…not much anyway!

Now the only question is, how will I be spending the first day they’re back at school? I’d like to say taking a few deep breaths, drinking hot chocolate and relaxing in a nice bubble bath. But we’ve got workmen round drilling lots of holes in the walls, so maybe not.

Paradise

I have a neck!

(How stupid does that sound? Nearly 46 years on this planet and she’s only just realised…)

The truth is I’ve been walking around since Monday morning like a swan with an elegant long neck rising effortlessly out from my shoulders. I had forgotten what feeling truly relaxed is like. The norm for me had become anxiety and stress, both emotional and physical – pushing the buggy, coercing a reluctant child up the stairs, carrying the heavy weight of an MPS diagnosis and all that it entails.

So what has changed? The paradise on earth that is Martin House Children’s Hospice.

When Pudding was first diagnosed, several people mentioned Martin House to me, but I pushed that idea away as fast and far as I could. To me, a hospice meant dying children and that was something I did not want to think about. Even when it was explained to me that many families go there for respite rather than end of life care, there was a barrier that I just couldn’t cross; it was one more thing on the path to acceptance of a life-limiting condition.

Earlier this year though, I was finally ready to take that step and got in touch. We went for a first look round in May, and ever since T has been asking ‘When are we going back to Martin House?’

Hubby looking out from a balcony at the grounds of Martin House at several rabbits on the lawnIt’s hard to describe what a special place it is. Sitting here I’m stuck for words. But I can close my eyes and see… Rabbits on the lawn. Jars full of cake. Paths that twist and turn through peaceful gardens. Communal tables set out for dinner. A rainbow of children’s faces on the wall. A bench in the sunlight. And I can hear shrieks of delight from T as he plays in the water with other siblings.  Birdsong. The patter of Pudding’s feet when he takes a break from TV to run to me for a cuddle.

A carer is allocated to each of the children to give parents a break from the constant monitoring of vital signs or medications. In our case, it was freedom from the need to be on constant high alert. It’s only when we got a break from that – a proper break, not just a few hours while he’s at school or asleep – that I realised just how wearing it is.

It was odd at first to let go. After all it’s second nature for me to jump out of my chair to follow him when he runs. I constantly assess his mood to second guess whether he’s about to hit anyone or throw something. But for the whole weekend someone else was there to do that. They even sat with him at meal-times so we could eat our food without having to persuade him to eat or stop him from cramming too much in.

A path winding through some trees and under a pergola. Hospice buildings in the background.So I sat in the sunshine and read a book, played with T and the other siblings, and chatted to other parents. I was so relaxed I barely took any pictures.

As I expected, we saw the difficult stuff too. At least one of the children staying didn’t have much longer in this world. And while we there a group of bereaved siblings were having a get-together. But the atmosphere is definitely not a sad one. It’s a welcome and warmth. The feeling of being well looked after and peace. A little slice of paradise. A weekend that meant more to us than I thought any holiday could.

As we drove away on Monday morning back to normal life, T asked ‘When are we going back?’

As soon as possible please….!

(Martin House survives on the kindness of volunteers and donations. If you would like to contribute to their wonderful support of families dealing with a life-limiting condition, you can do so here.)

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…

Drayton Manor

So so tired today, but it was in a VERY good cause. Namely enjoying ourselves all weekend at Drayton Manor theme park.

The weekend was organised by the MPS IMG_8518Society so we were surrounded by other member families.

It was of course great fun to try out the rides with the boys and eat too much rubbish for a few days, but when I asked Twiglet to guess what my favourite part was, he astutely said ‘spending lots of time with your friends’.

The deal that had been organised was superb value (two nights accommodation and two days pass to the theme park) but the chance to relax and chat with other parents was priceless. No need to let them know how treatment is going, or explain any medical terms.  Age, background, education – all irrelevant when faced with the fellow feeling that comes when talking to another MPS parent.

IMG_8491On the Friday night, there was entertainment laid on for the children – bubble machine, character meet-and-greets, party games, boxes full of Haribo. Needless to say, they were happy as larry, and as a parent it was great to watch knowing that any typical MPS II behaviour would be understood.

Twiglet made firm friends with the brother of another little boy on Pudding’s trial and they leapt all over the dance floor, racing cars and ‘being weird’ together. It’s doubtful that either of them were consciously aware of the bond that being an MPS sibling can bring, but maybe it played a part.

Hubby and I each had an evening down in the bar with the other dads and mums respectively, and in my case I can certainly say that gossip and laughter is a wonderful medicine. Though I may need to apologise to anyone whose room was overlooking our table – we may have been a tad loud. Particularly when we all waved enthusiastically at a man looking out of his window thinking it was one of the husbands.

The sun shone all weekend and neither the IMG_8528wasps nor the queues were as bad as Legoland. Pudding’s smiles when on some of the simple rides in Thomas Land were a joy to see, and there was another proud moment when he learnt to sign ‘train’. I also very much enjoyed taking Twiglet on some of the more adventurous ones when Pudding was back at the hotel having a nap. Lastly, over the weekend I found out that I have a part in another Shakespeare production.

So today life is good. Despite tiredness, despite bickering children and despite scraping the car’s paintwork on our gatepost. Life can be very good!