Lonely? Reach Out.

Having a child with a disability is not the norm for most families. So it's not something people are well equipped to handle, either when it happens directly to them, or to someone they know. Because of this it's hardly surprising that many struggle with the diagnosis of Autism in their own child. Often this will be the first contact parents have had with disability. And it's also asking a lot to expect all friends and family to react with wisdom and acceptance given they too will have had limited exposure.

I have experienced my fair share of disappointment at friends and family for their apparent lack of  sensitivity to Harri's diagnosis. This unintended detour in our path reveals aspects of peoples character that may have otherwise laid dormant. But how fair is it to be critical of others for not knowing how best to respond? How can we be certain that had the shoe been on the other foot so to speak, we would have done any better?

 At the time of initial diagnosis it's natural to expect others to make an effort to be sensitive and compassionate, and to find ourselves surprised and let down when they are not. But when people don't live up to the expectations we set up in our mind can we blame them? We think we know how people should respond to our situation because internally we know our feelings and needs. Understanding, patience, support, compassion.  Not denial, negativity, criticism or ignoring the situation. From our perspective this seems obvious but perhaps it really isn't. For starters, it's probably futile to expect people who have always been self centred to experience a miraculous personality transplant just because of your own personal upheaval.

If those in your life are not supportive, and it saddens me to hear how often that happens, then create your own network of empathic friends. In these days of social media it is possible to make connections with others who are treading a similar path. I say this as someone who has tried hard to create contacts within the ASD community with like minded people. This has not always been easy and has failed as many times as it has worked. But I have learnt that expecting those who do not have a special needs child to relate and show interest and understanding is often unrealistic, and that reacting by isolating ourselves is self defeating.  Reaching out is challenging when we feel overwhelmed and upset with the cards life dealt us, but connections with others is a great remedy for the blues. Especially if you can find a group with an optimistic or humorous outlook.

It can be particularly hard to take our children to play groups and other social occasions due to social and sensory issues and this can exacerbate the sense of being lonely and disconnected, but allowing these feelings to fester unresolved, to feed resentment of others for not seeming to care, though understandable,    is not going to help. Part of the journey towards acceptance of a child's life long disability is the realisation that life has changed, and so to will many of the relationships in your life. Use this time as an opportunity to leave behind those who do not offer you the love and support you require. And in doing so create the space and time for new, healthy relationships to bloom.