The other day one of the lovely bloggers I follow asked me if I would update everyone on my son Simons’ journey into Independent living. I was touched by the request and felt thankful that I am part of such a caring online community. Sometimes family can be found in the most unexpected of places.
For those of you who are new to my blog here is the link to the beginning of Simons Journey. Slow and steady wins the race.
Having lived at home with me for 32 years I’m sure you can appreciate what a huge step it has been for a lad who has, and always will, need some form of support with his daily life, and who has up until now received that help from his mum and family. I am so proud of his willingness and courage to step outside of his comfort zone into a totally new world where he can be as independent as possible within a safe environment. He now has his own flat in a supported living complex with on site carers.
As with any new venture in any of our lives there is always the ‘Honeymoon Period’. That lovely, yes ‘Rose-tinted’ exciting phase where everything is new, if a little scary. The holiday feeling when your waking up in different surroundings, and your day takes on a different outlook to the norm. Sadly, as I’m sure we have all experienced in one way or another that ‘Honeymoon’ period inevitably comes to an end, and a few weeks ago Simon hit that wall with a bang.
Instead of mum cooking his meals he has had to adjust to Carers knocking on his door three times a day, helping him choose something to eat and in the main cooking it for him, checking if he’s taken his medication, and just generally making sure that he is ok. Adjusting to all these different people has been both a pleasure and a pain as Simon has gradually got to know them. Some have already become friends and these added faces in Simons day are a welcome extension to his social circle (especially the pretty ones), but there is always going to be the odd ogre among the fairies, one that growls a little rather than sprinkling fairy dust, and that in itself can cause stress. Simon knows how to cope with his mum on a bad day but navigating a variety of different people and their varying characteristics is a new challenge for him.
A few other external, personal situations had brought Simon quite low. When he lived with me I would have helped him through them, or at least been on hand if needed. Now that he is living on his own he is having, or feeling like he is having to deal with emotional issues on his own, in his own head, in his own flat and that is a huge learning curve, and at times a lonely place to be. The last straw was a fall in the centre of town which left him with a painful hand, a sore knee and a very bruised ego. Simon struggles with any task that involves fine motor skills, just getting dressed in the morning is tough. Add in a few extra aches and pains and we don’t have a very happy man. All these circumstances one after the other left Simon in a very dark place and sadly and very abruptly the ‘honey moon’ period was over.
Sat at the doctors with my boy a day or so later and listening to him say that he had “just wanted to die” was a heart breaking moment, thankfully the extra tablets he had taken would only have made him a little sleepy, but he wasnt to know that, and the outcome of his cry for help that day could have been very different. I made a slight reference to this in my post Has anyone seen my glasses? . Thankfully the carer visiting him noticed immediately and he was on his way home for some TLC.
I remember my mum saying to me once that when you reach rock bottom there is only one way to go and that’s UP! Ivy you were a wise old owl, but how true it is. Suddenly you can’t go any lower. We are all only human, and we all have our limitations. Simon reached rock bottom that day, but it was a turning point and things are gradually improving. He’s smiling again and hopefully a little wiser himself, I know I certainly am.
Independent living means ‘All disabled people having the same freedom, choice dignity and control as other citizens at home, work and in the community’. This in itself is a great statement, it’s so good that Simon can have the opportunity of having his own home and his independence but with the help he needs to maintain it. The problem comes when that ‘Independence’ means giving Simon the choice of continuing to take his tablets ‘independently’, even after a clearly risky situation. I found this a very difficult one to swallow as I’m sure you can understand. Thankfully both the Doctor and the Nurse encouraged Simon to have his tablets locked away at least for a while. Thankfully he listened.
This was the down side of ‘independent living’ at its worst, but there are definitely a lot of up sides. For me it means that Simons’ care is much more of a shared thing, and not just weighing heavily on my shoulders. He is having far more interaction and help from other members of his family as well as the carers. He can have friends over to stay the night, and even begin to take pride in his surroundings. I was smiling when he told me he’d had the Hoover out before a visit from his dad.
My heart also did a little dance the other day, when in a shop with Simon he saw something that he wanted to buy for his flat. That was a first, and a rather special indicator of how far he has come, despite the setbacks.
It has been, and will continue to be a learning curve for us all as we get used to Simons new way of life. I have swapped the daily intensity of the situation for a slightly different role, which now includes liasing with Carers and Social workers, but it has also provided some much-needed space for me and Simon. I now look forward to opening the door to my ‘Son’ when he comes home to visit his Mum.
Simon has ongoing health needs, his weight has been an issue over the last couple of years, and he is having swallowing difficulties which isn’t helping his weight. Thankfully now that he is living ‘independently’ his health care providers are taking a much more active role in his well-being, knowing that they can’t just rely on Mum for his safety.
I’m hoping that its onwards and upwards from now on.. and when all is said and done there is no better tonic than a day out at the ‘Villa’ with your big brother, or a sneaky night tucked up at home, and of course we all love him to bits. (well most of the time!)
Love Alison x