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Thursday, June 2, 2011

Survivor Guilt Gone

 Well perhaps using the term Survivor Guilt is a bit strong. But it is the closest term I can think of that describes how I had been feeling of late.

Over the previous few weeks Ive had the opportunity to meet several other children with Autism now Harri attends therapy sessions in centre. Of course these wonderful kids are representative of the broad presentations that come with ASD. They range in ages from 3 to about 8, so Harri is the baby of the bunch. Yet he seems to be the most verbal, and currently, the least affected by his Autism. This has led to some strange emotional responses in me. Rather than feeling relief that my child is not as profoundly affected as others I admit to feeling a sense of self consciousness bordering almost on guilt. When I am in a room with Harri and another child with his mother and Harri is communicating effectively while the other child struggles and grunts I feel almost embarrassed by the juxtaposition of our kids. I wonder if seeing Harri functioning relatively well is a painful reminder for that mother of how impacted by Autism her child is? In the same way survivors of  catastrophic events can feel guilty for surviving rather than relieved, I find a similar psychological twist occurring. There's not a sense of thankfulness that one would presume to have in this situation, rather a feeling that perhaps we are utilising recources that would be more fairly directed at others. That in some way Harri  isn't Autistic enough to deserve so much time and attention, or at least I wonder if that is what the other parents are thinking based on observing him.

So it's been an interesting experience to reflect upon. Of course there's a lot of projection going on. I suspect if I were the parent wearing the other shoe, with the severely affected child, perhaps I would feel resentment at having some other kid around to remind me of this? I dont know, I can only imagine. I am aware that this process has occured because for the first time since Harris diagnosis I have been in a position to meet other children with Autism, and consequently draw comparisons. Now I know we should not compare our children NT or otherwise. That comparisons at any one point in time are not indicative of potential and eventual outcomes. But it is incredibly hard not to do so. And it was last night when drawing comparisons between Harri and a friends NT child who is only a few weeks older than him, I realised how incorrect my position had become.

Watching this friends child interact with his mother, and my NT daughter, observing his social and communication skills, his knowledge of numbers, colours and animals which he happily chatted away to us about. His cheeky moments of  two year old defiance that were easily negotiated, were all a stark reminder of how there can be no doubt about Harri's diagnosis. Like being slapped across the face with a shovel, the reality of how verbally and develomentally delayed Harri actually is came back into sharp focus. In that moment of realisation came acceptance that yes my child is deserving of all the help I can muster for him. He needs it. There is no doubt and no guilt. Anymore.


  1. Something I have learnt on my journey with my son is that there is always someone worse of than yourself. For me that means someone helpless in a wheelchair or no longer with us because they didn't survive their fight with Meningitis. I stand and I look at those families and I am grateful that I still have my son and he is not restricted to a wheelchair.

    However there are other times when I am the person that is worse off and the other person is looking at me and saying - I am so grateful.

    It gets easier and you're right your son does deserve all the help he can get but he might not need as much or for as long as others. You shouldn't feel guilty, the other mother wouldn't want you to.

    My blog - This is No Ordinary Kid

  2. I know what you mean. Now that Boy 1 is older and doing so well, it is easy to feel guilty about peers on the spectrum who are not. I have to take a step back and look at where we began, and all the work it took to get us here.

    Then I know there should be no guilt, merely pride and joy.


  3. I so understand what you're going through, but from the other side of the gate I guess.

    My son was - most of the time - the most profoundly effected of the children attending his autism play-group. I felt guilt for detracting the efforts of the therapists / teachers in the group, from the other children - that my son was too extreme for the group and was taking too much time from everyone else. That he screamed too loud, cried too much, hummed too much. I would apologise quite a lot in the early sessions to the other parents, and even thought about leaving the group so their more able kids could get more out of it without my son ruining it. In time though my son greatly improved and wasn't so distracting, but he continued to be amongst the more severe.

    I think the moral there is we all go through a stage of getting used to where our children "fit in" - both in regards to NT and ASD children, and that's OK, but sometimes we need someone to tell us it's OK. I needed (and had) one of the more experienced mums to tell me it was OK that my son was so upset and not as responsive as the other children, that I was among friends who wouldn't judge and understood. And in turn, as new mums became part of our group, I went out of my way to reassure them that they belonged there too - no matter where their child sat on the spectrum. We were all in this together.

  4. Thanks all for your wise and moving words. It's such a complex process, this coming to terms with a special needs kid business. So many emotional and intellectual quagmires to negotiate. The overiding emotion I am left with is a profound respect and admiration for all parents raising children with Autism. It seems to me challenges are prevalent for all, no matter where on the spectrum our kids are from day to day.

  5. I think it's nice that you're able to look at this from a different angle and see both how hard it is for others and how hard it can be for you as well. Not to mention seeing all the good. Thanks for the different perspective--I needed it today.

  6. Bad day Lizbeth? You know after contemplating this further I do think the fundamental emotion driving this process for me is compassion. AS you say looking at it from differing angles. Take care.

  7. We have many emotions that we have to work through.

    Embrassing them is the best way to do this :)

  8. This feels very familiar. It's good to be grateful for what we have, and it's also important to acknowledge the difficulties we each face. Compassion is always more helpful than comparison.

  9. Yes, I've had feelings like this before. Good in a way because it reminds me that we are doing OK. There will always be someone worse off... but good on you for trying to put it into words.