The start of a new road… not to Debenhams.

Strap yourselves in Ladies and Gents, this is gonna be a long one!

Over 2 months since our last update. I didn’t actually realise that much time had passed… but ‘time’ seems to have taken on new meaning since Covid hit. One minute I’m in lockdown eating Easter eggs, then I blinked, and now its Autumn and I’ve started getting emails about Christmas.

In one respect, it doesn’t seem like much has happened, however quite a few milestones have been hit by the Riley family!

The first, somewhat major one, being that T finished Primary School. Somehow 7 years have passed, and now he’s 11 and wearing men sized clothing. I am traumatised. I have written many times about just how wonderful T’s school have been, both pre and post Ataxia diagnosis. They are simply incredible, and have contributed to his life far more than just teaching him to read and write. They have helped to shape the amazing young man he is, taught him resilience, been a shoulder to cry on (for him and us!) and approached every barrier to learning with positivity and determination. It has been more than ‘just a school’ in so many ways and the staff have become a massive part of our lives. It has been an incredibly emotional process to say goodbye to them, and I don’t think the term ‘thank you’ could ever sum up just how much they have done, particularly over the past 3 years. This is a side to education I wish Ofsted paid more attention to. 

Now obviously, due to old ‘Rona, T didn’t quite get the Year 6 experience he should have; as was the case for every young person who has made up the ‘Class of 2020’, in every school up and down the country this year. However, the staff arranged a ‘socially distant goodbye’ for T, which was wonderful and incredibly thoughtful. We went to school after hours, and the staff were out in force to say their farewells to him. Well, I had this wonderfully detailed and impassioned speech prepared about how thankful we were… and I totally cocked it up, ugly cried and managed to squeak out:

*Sniff* Th…th….thank you *snot* s…..s…..so……so *sniff* m…m….much *sob* (repeat)

Not quite the eloquent and dignified goodbye I planned. Ho hum.

The next day, the school arranged for a ‘socially distant photograph’ to be taken on the playground and arranged it so T could arrive last and leave first. I think that T thought this would be a big send off. Bells and whistles. Everyone wishing him well and waving him off into the drizzle. In reality, for the other kids there that day who had gone back, it was just another school day. And they still had a week to go before the end of term. T’s last venture to the school, was just another ‘new style school Tuesday’ to them. So he was quite upset on the way home, after they went back to continue their lessons. I don’t think it had hit him until this point, that this really was the end.

T is the only one from his Primary who is going to his new school. It’s going to be a difficult transition for all the new Year 7’s this year, but a particularly tough one for T. It is something we have talked at length about with his Art Therapist, and the majority of the (virtual) sessions that they have had, have centred, and will continue to centre around this. On a positive, the staff at his new school are wonderful, so we have every confidence he will soon settle; and there is not a doubt in my mind that they will take care of him.

One final parting gift from the wonderful D’well Academy, was a surprise visit from the Head of School, one of T’s teachers and one of his lovely TA’s. They arrived on our doorstep to present him with a special governors award, which is only given out to one pupil each year. It is called the ‘Sports Person of the Year’ award. They said that T had been chosen for his outstanding attitude and love of sports, and the fact that he always gave 100% effort. They said he was an inspiration to others. Well. Blow me down with a feather and call me Charlie, I nearly combusted with pride. He is certainly an inspiration to us. He has the trophy sitting proudly on the cabinet in his room.

Since the lockdown restrictions have lifted a bit, we have been cautiously trying to venture out into the ‘real world’ a bit more. I guess we can’t stay in our house forever! We had a little holiday to Helmsley, one of our most favourite places in the world (we hope you had a nice time there too Miss Evans, if you are reading this!) and we started seeing some of our families again, which was AMAZING. Baby Riley however, has developed ‘People-Phobia”. I mean, this is unsurprising really given that he’s spent the majority of his little life with only us 3 for company. If you are not myself, J or T he is likely to cry… and potentially growl at you. He’s also rather adept at a slap round the chops. He’s like a mini anti-social Jackie Chan crossed with Jack Jack from the Incredibles. We’re getting there slowly with him now though. It’s taking some time, but he’s growling at strangers (aka: anyone who isn’t us) less, and ‘high 5-ing’ more. He smiles at his lovely Grandparents and will allow small hugs. However, he did try to take on the resident ‘wild cat’ of the street the other day, so perhaps the savage in him lives on! He’s also *just* started to walk… and he’s turned one!! He’s an adorable bundle of terror on two legs. But he’s ace and we love him. The bond between him and T has only become stronger. Not sure T is loving the fact that his favourite pass time is to try to tickle his feet and eat his iPad… but what’s a small chew between brothers eh?

Something which has become more prominent since lockdown began, is the effect it has had on T’s mobility. He’s out and about less, so consequently has lost some of the strength he had built up in his legs. Now we are able to get out a bit more, we’ve been trying to encourage small walks, and we play in the garden. He’s also re-started his swimming lessons (we felt the benefit far outweighed the risks, especially as its such a small swim school).

Something we weren’t expecting however, which has cropped up over the past few weeks, is an increase in his legs ‘giving way’. Particularly the right one. It has been happening more and more frequently. It literally happens with zero warning. One minute he’s trotting along, the next minute – boom, leg gone. This has now increased to the point of it giving way every couple of steps. What’s made it harder is that it has really really (completely understandably) started to upset him. For the first time in a long time, we are seeing consistent resentment of his condition and increased levels of frustration. It took him 8 attempts to stand up this morning. 8! Just to stand! And thats before he’s even tried to walk anywhere. I’m finding this incredibly difficult to write because it is actually breaking my heart. Fingers crossed this is just a phase.

In the meantime, we have been trying to think of more practical solutions to make life a bit easier for T. Now it has always been our long term plan to convert our garage into a bit of an independent living space for T. As his ataxia seemed to have stabilised, we didn’t think we would need to cross this bridge for a while. But we’re clearly now on the bridge… and the bridge isn’t yet built. Alas.

We discussed it with T who was VERY excited about the prospect of a new room (and bathroom!), however he came down stairs the morning after our chat looking very solemn…

“I’ve been thinking Mum. I really don’t want to move out, I don’t think I’m old enough. I still want to be part of the family and use the kitchen and living room.”

God love him, he thought we were kicking him out. He is back on the positivity train now we have reassured him that he will still very much be part of the family. And have access to the biscuit tin.

We’ve also been thinking about the layout of the rest of the downstairs areas. Now, I have to say, its not like we live in a Garden Shed, because we don’t. We love our house. However, if it gets to a point where T needs to be in his wheelchair at home, or using his walker more for support, the layout we have in the kitchen is just not feasible. It will be so difficult for him (and us actually) to get around. So we have decided to re-model the downstairs, extend the kitchen, and try to open everything up a bit more. I was contacted by another family (through this here blog), who told me about a grant we can apply for to help towards some of the building costs. We had a visit from a lovely OT from Social Services today to help us get started on the application process. I don’t think it’s going to be straight forward, nor will it be quick. She also said that she doubts we will get any funding towards the remodelling of the downstairs, but we should (hopefully) get some support with the garage renovations. So it’s baked beans to eat for me and J for about 20 years to pay for the kitchen, but it will be worth it if we can make it work. The next stage in the renovation of T’s space is to have a surveyor come out and ‘assess’ whether he needs it. She said that we shouldn’t be surprise if they suggest putting in a ‘wheelchair lift’ IN THE LIVING ROOM to get him upstairs instead…

erm, WHAT?! This isn’t bloody ‘Debenhams’.

Also, this would then mean that said lift would deposit him into our bedroom… not his own bedroom… and the doors are narrower upstairs so the wheelchair wouldn’t actually fit through. Nope. Not happening. Not at all. Luckily, the lovely OT, can see our point with this (hopefully).

So that’s where we’re at. I told you it would be a long one. T has a little get together with his school friends tomorrow. I’m hoping this lifts his spirits. But, if you can spare a positive vibe or two, our dude could really do with some right now.

Take care,

The Rileys

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