It takes a community to raise a child. Particularly a child with disabilities who becomes so dependent upon a family. Immediate family.
When that child grows and becomes a young adult, the need for that community grows. A community will bring with them a sense of friendship and support, all at different levels and in different ways. Our son is blessed with a global community of people, no, of friends who have taken him to their hearts and encourage him in many ways.
My wife and I have always held our son at the centre of our world, trying to do the best we can to understand and support his ever-demanding needs, while trying to involve and include him in as much as his abilities will allow. We cannot do this alone. It took a long time to understand this and when we finally realised there was no weakness in asking for help, we discovered there was a community out there who were ready to support both our son, and ourselves.
Medical professionals for certain are key members of this community. We learned to talk with them, explain our feelings, hopes and fears and this community talk with us and listen to our concerns. We have undying gratitude for all those in the medical profession who have chosen to study so hard to support people like us. There is a community of support workers, many of whom just seem to know what we are going through, even before we say anything and know how to offer or direct us to much-needed support or respite.
There is, of course, the family community, though our experience is that a disability can create fear within family members who have had no experience of it. They don’t know what to say, or how to behave – in truth Autism itself is a very complex area and sensitivities even to one who knows can be unexpected and alarming if they result in meltdowns – and we should not find fault with those who stay remote, and that fear and uncertainty is not a statement of rejection.
Friends are the saviours to anyone, not just for ourselves. A friend expects nothing in return, will engage with and talk with irrespective of being responded to or not. There is an incredible gift by ‘friends’ who can be from around the world, who just say ‘Hi’ and it brightens up the day of someone locked in the turmoil of disability. In our case, many people write to us and our son through ‘on-line’ methods and though messages need to be read to our son, they delight him and make his day. He always wants to say ‘thank you’ and more in reply, which we willingly do on his behalf. There are days when he is not up to it, but friends understand and make no judgement. These people are part of this community and though our son struggles to understand what a friend is, he is delighted to say he ‘talks’ to people from around the world – another concept he struggles with – but we use a world map to show where everyone lives. My wife and I know this group of people as friends, dear friends.
Don’t feel you are alone, there are people in this world who will befriend you and support you if you need it. Just follow certain safeguarding rules to protect yourself, but you are never truly alone. We did find that we were excusing ourselves from many invitations and events and lost a lot of contacts because of this. Understanding what we do now, even if you are restricted through mobility, technology does open the world to you in many ways and you will find your own community is larger than you realise.