Survivor Guilt?

This morning was another little first in parenting – I nipped to the shop leaving my 9 year old at home with her 11 year old brother, very briefly, for the first time.  We enjoyed a relaxed breakfast together and it felt just so deliciously ordinary.

I am aware that the word ‘normal’ can make some people flinch and I can understand that, so I tend to use the word ordinary instead.  ‘Normal’ doesn’t make me flinch but it has been used / abused quite aggressively in my presence a few times, so I can understand why it might adversely affect some people.  And goodness knows, we have enough to deal with without extra flashes of discomfort over a thoughtlessly placed word.

I remember the first time ‘normal’ was used inappropriately in my presence and the deep confusion I felt at the time.  Peter was very little, he had just turned 6 and was becoming increasing anxious and distressed about school.  I was due to have a chat with his Head Teacher about it.  It turned out to be quite an ambush.  I didn’t realise at the time, but ambushing parents like this can be a frequently used approach by schools.

He is normal, normal NORMAL I was told by the Head in front of the nodding year one teacher (cue: patronising head tilt combined with a gentle nod) the TA (why was she there and who was looking after the class??????) and the SENCo.  The SENCo had watched him in class and he is NORMAL.

I just froze.  In my head a voice was racing “But you have spoken to his Clinical
Psychologist and she has carried out months of home, school, clinic based and cognitive assessments”, “I didn’t ask you if he was normal”, “Can we talk about school stuff – his Clinical Psychologist knows about the mental health stuff”.  I don’t remember if I said anything but I do remember my drive to work in complete shock.  Their arrogance was breath-taking and it was a while before I was able to attribute their approach to unconscious incompetence (more on that in a later post).

My jobs over the years had involved working with senior clinical staff who were trained to work at a level where sound clinical judgment underpinned by strong clinical knowledge and skills was paramount and I knew a good one when I met one.  My instincts were clear – the Clinical Psychologist was very skilled in all these areas.  I trusted her even though what she was saying was turning my head to mush.  It turned out that I was right to trust her.  The benefit of hindsight has taught me that she couldn’t have written a more accurate report when Peter was 6 with the help of a crystal ball.

So why the survivor guilt?  I found myself thinking that we could have lovely relaxed “ordinary” times on a Sunday morning every week.  I could leave the children relaxing, nip to buy fresh bread and share a bacon sandwich.  Why does the thought of this keep making me cry?  Why does it hurt so much?

It so nearly didn’t happen, it might not have happened for us, and it has.  I’m so painfully aware that is isn’t something that some families will ever be able to take for granted.

For some families this very ordinary milestone would be a dream.  For those with children who will be dependent on high levels round the clock care will never sit around a table where everyone can feed themselves.  Never be able to ‘nip the the shop’ spontaneously – or even as a planned event as, believe me, the level (and sometime quality) of carer support is pitiful.  Even a planned event therefore cannot be guaranteed.  They may get 4 hours once a fortnight of a care provided, for example.  The carer may/may not turn up and may/may not turn out to have the skills necessary to look after your child.  Given that this all goes well they may give your child a lovely time or they may park them up on a street pavement whilst they have a chat on the phone/smoke a cigarette/do some window shopping (delete as appropriate).  These families may make their own lovely times, but I feel guilty for being able to enjoy something so ordinary.

For us it might not have happened.  As I hinted at, the Clinical Psychologist was right.  My little boy was very anxious and also has Asperger’s Syndrome.  This alone does not negate the achievement of many very / most ordinary milestones.  If the child gets the right (often minimal) support.

Fast forward to my son being 9, and assume many more ambushes, denial, blame and more, and my little boy’s mind was critically (and potentially permanently) fractured.  He was admitted to a mental health children’s ward where he stayed for months.  We were told he will never attend mainstream school again, will need residential provision and at one point whether he would recover in anyway at all wasn’t guaranteed.  His specialist teacher 14 months later said he resembled a child who had acquired, and was recovering from, a physical brain injury.  The minimal support in school that I mentioned is important, believe me.

So maybe I am just scared by what could have been, grateful for what we have and much more aware of the difficulties that are experienced by those more severely (physically or mentally) disabled children.

Posted by Peter and Lily’s mum.

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4 thoughts on “Survivor Guilt?

  1. Arghhhhhhh!
    We had a very similar experience.
    How do we change this broken system.
    How do we stop good, struggling, caring parents from getting ambushed and blamed and how do we protect the mental health of children with ASD and special needs.
    This is VICTORIAN. Why is it happening?
    Is home ed the only option?
    [exhausted and sad emoji]
    Thank you for the post.

    Like

    1. Thank you for taking the time to comment it is so much appreciated. All i know is that if we support and inform each other then maybe we can make enough small changes to make a difference! Let’s hope so

      Like

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