That’s a line in a Rihanna song, and whilst I’m not sure of it’s intended context within the lyrics of the song, it did occur to me recently that it could probably do a great job in summing up the way parents of a severely autistic son or daughter might feel – their child being the “broken one” (as in afflicted by the difficulty), yet the parents are those under continual strain, both emotionally and physically exhausted and so often feeling in need of “saving”.
Given the worrying high proportions of children affected by autism spectrum disorders in recent years, there are, as you might expect, a multitude of support groups for affected families – both online, in terms of websites, facebooks pages/groups and similar, various levels of groups that meet up, both at a regional and neighbourhood/local level, and charities such as the National Autistic Society in the UK. These groups provide a crucial lifeline to struggling families – both in terms of help – practical suggestions, contact details where support can be provided, helpline phone numbers and email addresses – but perhaps most importantly of all, a place where parents can get to meet others who truly understand how difficult it can be looking after and guiding an autistic child through life’s journey.
For me, personally – I’m going to own up now, and say that I have tended to only rarely attend the regular support group meetings covering the area that we live. And why is that? Well, first things first – I am not in any way shape or form going to criticise these support groups, which are so important for many people. Far from it, for many I know these are a lifeline! My view though – if you’re going to spend a sizeable chunk of your time, day after day, month after month, toiling hard to raise a child with a significant disability, do you necessarily want to spend some precious time away from all of that talking about the very same thing! Respite is possibly one of THE most important things that has allowed us to survive and maintain something approaching sanity over the years – so an evening off? We’re more likely head out for a Chinese buffet or carvery and a relaxing drink, and very nice too… but that’s just us. Perhaps we always were socially awkward in that way… Perhaps if respite breaks were thrown our way on a frequent basis – then I suspect we would more likely try to attend.
That said, we most certainly DO maintain a close eye on support groups via social networking such as the facebook site.
Social networking sites in recent times have themselves come under a lot of criticism. In recent days there has been a huge wave of quite understandable negative publicity concerning the social network site “ask.fm”, whereby a lot of highly unpleasant and unsavoury comments have been targeted at younger members, in a few cases even leading to the desperately sad situation where suicides have occurred.
I have also noticed a trend whereby any online news articles concerning facebook or similar social networks, appear to immediately encourage a wave of hostile comments from readers, stating not only that they will NEVER subscribe to such a service but that those who do are complete sad losers with no life and no friends in the “real world”.
Why on earth such people cannot be satisfied with saying that it’s “not for them” and leave it at that is beyond me. I wonder – I suspect most people who come out with these comments have friends, relations, nieces, nephews and other contacts who do regularly tweet or post online – are they saying they are sad losers too?
In the world of the autism support group, what I see very frequently is the exact opposite of what has been described. To me these pages are a marvel – to think that there is somewhere you can raise a concern, or say that you are struggling, or you are alone, that you can’t cope – and have someone who not only understands precisely where you are coming from, who is quite possibly in the same boat as you BUT could be almost anywhere in the world, respond with genuine words of support and kindness and understanding, that is an amazing thing. And in the world of facebook, you genuinely may not have any idea of someone who post’s background, age, colour, whether they are wealthy or poor… only that they have taken the time to be supportive and understanding during your time of need. Surely that’s not a bad thing.
People who look after children with autism simply may not have the respite available to them, may very well not have the money, and almost certainly not always have the energy to go out to pubs, parties, dinners, weddings and other social events. Sadly we have run into the situation ourselves where we have politely turned down wedding invitations or other social events. This very weekend coming up, we have been invited to a Christening some three or four hours drive from here. Alas, with no respite available over the holiday weekend, it’s looking like I will attend with my daughter, leaving my wife at home to care for Daniel. One thing I guarantee we can do each and every day, however, is enjoy the contact and shared thoughts, jokes and messages with others in the online community.
I like to think that, for every unkind or hurtful message posted to individuals via social networking – and let’s hope this kind of behaviour can be curbed – there are thousands more messages sent of support, concern, advice and understanding via these sites, and maybe someone who felt a bit low, tired or very alone in the world, logs off feeling happier, understood and no longer alone.
And with that closing thought, I’m going to post this blog entry and see what else is happening in facebook this evening. After all, the kids are in bed so we’re not going out just now… J