So its been all change in the Riley household this week; and I don’t mean with us as a family, I literally mean the house itself.
Up until 5 years ago, we seemed to move every year or so for one reason or another. We were in the wrong city for my career, our landlord wanted to move back in, we wanted to buy rather than rent… I could go on. Finally our last ‘Little While House’ was left behind for our ‘Forever House’. A house we finally owned, with space for friends and family to stay and, most importantly for me – a bay window for the Christmas tree… I am the biggest Christmas fanatic EVER. Our home was perfect. I say ‘was’, as now it serves as both a comfort and an equal hinderance to T.
Since T’s FA diagnosis, things at home have become increasingly challenging for him. To us as a family, these ‘things’ have just become part of our every day life: assisting him in and out of the bath, encouraging the descent of the stairs sat down on his bum to prevent falling, sitting down in the shower so he doesn’t slip, etc etc… Adaptations to routine, as and when they arise. This isn’t a long term solution however. We want T to feel independent and comfortable in his home. His needs are changing quickly and we don’t want him to feel as if we are doing everything for him 24/7.
One thing which has been greatly concerning us for a while is the location of T’s bedroom in relation to the bathroom. To get to said bathroom, T has to pass the top of the stairs. Now our landing isn’t particularly small, however, T is noticeably much more unsteady when he is tired and so late night/early morning toilet trips result in anxiety for us and potential stair tumbling danger for him. We could move his bedroom, swap him into the spare room; however with so much change going on in his life already we don’t want to further unsettle him. Also, he has the biggest room in the house which is full to the rafters with toys, board games, wrestling stuff and games consoles. There isn’t anywhere else that will house his luggage! (Seriously, how do children accumulate so much stuff?!) Its also the one place in the house which is just for him, and we are not going to take that space away any time soon. So, what do we do? Luckily for us, we have our awesome OT who referred us onto Social Services for advice and guidance. Now I’m not going to pretend I took this referral lightly, because I didn’t. Being referred to Social Services made me feel like I had failed as a parent. I know this is not the case and to some that might sound silly, but that’s how I felt. I think it is a shame that society has us believe that this is so. When did receiving help become such a negative thing? It has certainly made me re-evaluate the way I perceive labels and I feel embarrassed that I allowed myself to be affected by a stereotype. FYI, Social Services are not the enemy. They are however, crap with timescales.
We met with a Social Services OT who looked at the house and discussed ways in which our home could be modified to help T. It was decided that an extra stair rail and gate at the top would be the perfect solution to our late night woes. We thought we would have to pay for all home modifications ourselves, so it was lovely to know we would have ongoing support to help with this. J met with a nice joiner who told him that he would be back within 2 weeks to complete the job. That was in June… its now September. For anyone not familiar with the months of the year, that is far longer than 2 weeks. I have called, our OT has called, our Neuro Nurse has called… never anyone there to take the call. SHOCK. Eventually, after an admirable tag team effort from our team, someone got through and within a few days Steve* the Joiner appeared wielding tools. This is our new and improved staircase…
I’m not sure Laurence Llewelyn-Bowen would approve; but to us, seeing T be able to climb rather than crawl up the stairs and to know he won’t tumble down when he gets up during the night, it is the PERFECT home improvement. Not even Ikea could top this one. Not even with a 75p hotdog thrown in.
This is not our only adaptation either. We also have a bath board to help T get in and out of the bath, and a shower stool so there is less chance of him slipping.
Our wonderful OT is determined to help us assist T in being as independent as possible, for as long as possible. We have discussed the possibility of converting our garage into an independent living space for him, which she assures us S.Services can help with too; but we are certainly not at that stage yet. We may also find that in the future we need to move and leave our house behind. That prospect initially made me sad, however, I have realised that it is just a house. Bricks and mortar. The home is made from the people who live inside.
Our ‘Forever House’ might not be ‘forever’ anymore, but it is a happy house; and that is more than enough for me. And you can put a Christmas tree in any window really…
*Steve the Joiner might not actually be named ‘Steve’ as J can’t remember his name. But, we decided he looked like a ‘Steve’ so went with it. Steve, if you are reading this and that’s not your name, we apologise! Also, we strongly suggest changing your name…