Our son is now 30 years old. Over the years, and at times, even today, one of the biggest challenges to my wife and I is acceptance. Becoming the parent of a child – or even an older relative – with additional needs does require a level of acceptance and commitment that you may never have thought about.
This doesn’t mean that you will love them any less, though you will likely go through periods of frustration and maybe even envy until you truly accept the position and role you find yourself in. Friends and family will talk about holidaying here and there, flying, cruising, dancing even hiking, generally accessing all those activities and places seemingly at the drop of a hat and you sit back, look around you in your seemingly contained world and think, ‘is this all that I have?’
I would suggest, acceptance of your position is the first step towards embracing all this, and more, for yourself too. At first, the thought of caring for someone your whole life, and their whole life appears daunting and very restricting, but if you don’t accept it, you lose the ability to plan ‘how’ and when, you can once again, holiday, fly, cruise and dance.
In our case, that acceptance came very early when we realised that there was not going to be a ‘cure’ that will make our son well again and that, the older he becomes, the more challenging his care and support will be. At that point, we realised – often painfully – that we will also need to access help and support from professional bodies and other parent carers who can guide us through expectations that they have seen time and time again and can offer us advice on what to expect in the future. Yes there are also grants and benefits, allowances and respite opportunities that all need exploring and you will find is an ongoing process too, but what you realise is that your world doesn’t end as a carer and you don’t become a prisoner to your relatives needs, but all you need is a desire, ambition and belief and accept the only real change, is that you need to plan ahead. Do this and you will be able to go that extra mile.
As a professional before I retired, amongst other things I was responsible for managing ‘change’ bringing a new understanding to a workforce who were used to the way they were doing it, developing values and strategies and one thing I always allowed for, was that spontaneity within a structured process. The human soul loves to do things on a whim, it excites, thrills and rewards when you can do something unplanned. We still do that but have learned to accept that our structure is the care and welfare of our son, but through careful preplanning and preparation, we develop time where my wife and I can be spontaneous and unplanned within this structure. There is no need to be envious of others apparently doing what they want without any care or responsibility, we do it too, but we also know we have planned it and receive the biggest reward of all, being the inclusion and joy of our son.
He has been on a Ferry, on a cable car, trains, trams, horse-drawn carriages, we have holidayed in Hotels, cabins, caravans. We have paddled in the sea, raced across fields, zip-wired, even hiked along bridle paths, and danced all night. All with multiple disabilities and wheel-chair, but we planned that extra mile, worked through each stage to be sure we can do this and do you know, there really is no limit to what can be done and with the support of others who joined our journey, my wife and I still get to go on a date together, knowing our son is cared for.
We have big things to experience yet, we want to fly on a plane, we want to canoe on a lake, we want to swim in the sea, go caving and do you know, we will! all we need to do is think ahead and there are those who will help us do it.
Do not think you cannot enjoy life to the full, even as a carer, do not think the person you care for cannot access life to the full, reach out to those who support through professionalism and experience and you will realise, you are not alone and you too can do all this, and more.