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Tuesday, August 2, 2011

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.


  1. Love this post! Thankyou so much for your blog - I'm finding it quite a journey!
    Would you mind if I link this post to my blog? (If I can work out how!! So new at this!)

    Trine xx

  2. This is really good advice. I find, though, that a lot of people have a really hard time asking for help and finding support. I hate that, so I try to offer myself to anybody and everybody I encounter. I mean that in the good way ;)

  3. Thanks all. This seems to be a recurring theme and its disappointing to think so many have been 'abandoned' by friends and family. I am grateful to the online community I have found.
    Trine I would be most happy for you to repost.
    Take care all.

  4. Bravo, excellent post. Will be sharing it with others :)

  5. Very well said and so true. Thank you Sharon.

  6. Well said!
    I am truly lucky in regards to the support and understanding I have from family and friends and I am gutted to hear how many other parents do not get this much needed support.
    Having said that, while intentions are good, they cannot understand the way another parent with a special needs kid can, and I rely heavily on forums and facebook as well as other local parents.

  7. Love this post. I need to find the community you're talking about. This is my 3rd year of isolation and the cracks are starting to show!!! **lol** Thank god for all things bloggy, now to find special needs playgroups!!

  8. Thanks Lizbeth and Anonymous.

    Marsupial Mama I'm still searching myself. I tried an ASD play group but didnt click with the other mums. Then another group I found was great but then the times clashed with Harri's therapy. Then had to delete myself from a FB support group recently after going head to head with the other mums re. vaccines. I don't mind a good debate but when they accused me of being mean despite me being on my best diplomatic behaviour I once again knew it wasnt a good space for me. The search continues. Like you the blogosphere has been the best source of wisdom and support so far.

  9. Just what i needed to hear, at exactly the right time... Thank-you :)

  10. In my experience the key to including friends and family from our life "before" requires providing as many opportunities for interaction and honest explanation as possible. I've seen some parents cut off others from their lives, because they are not open and honest with what's going on. We gain our experience by living with our children every day, but for others it's only occassional. Without sharing openly and honestly what we learn and experience, others are not going to be able to understand.

    Sure, some people will still choose to remain absent, but others are eager to understand and to continue as part of your lives--they just don't know how and they're often afraid it's impolite to ask. Open the door and some of those people, the most precious of them, are going to walk through and stick around.

  11. Yes. But do everything you can to stay connected to others who will understand you and your journey. It's very easy to become isolated. I am trying to dig out of that now.