This is the third time I have deleted this blog and started again.  The reason it has needed to be rewritten is because it is a sensitive subject.  Some people will agree wholeheartedly with my thoughts on this subject, and some will vehemently disagree.  I apologise to those of the latter camp and hope that they understand that this is based on my personal experience and findings when supporting families during a difficult time.


Bettina Frinton 16 5

To give some backstory to this subject, it is necessary to revisit the days when our daughter, Bettina, was first diagnosed with autism, a learning disability and complex communication disorder.  The normal process for assessment, diagnosis and prognosis was (back then) for your child to attend a child development centre through the local health authority over several days.  At the end of the few days, a multi-disciplinary team would meet with the family to discuss their findings and what happens next.  I did not, and do not, envy any professional with the responsibility for telling a family that their worst fears are true.  It can be a crushing blow to have your fears confirmed and no professional can predict what the reaction of the family is likely to be when given this information.  Having supported many families through this process, I know this to be true and many parents have told me that having support from someone who has been through this themselves has been of enormous help.

However, whether you react well, or whether you react badly to this news does not make any difference.  Once you have been told, you have been told.  There is no going back, only forward.  By all means allow yourself some time to digest, absorb, reflect and (if necessary) grieve for your child – after all, you are human – but dust yourself down because the ride is about to get very bumpy and this brings me to the point of this blog.

All those years ago, when Bettina was first diagnosed with her difficulties, I sat at such a meeting with the professionals responsible for assessing Bettina.  One of the attendees turned to me and said “I feel so sorry for you, what awful news!”  She might just as well pressed a big red nuclear arms launch button!  My reply, much to the horror of the other professionals, was “What? WHAT? You feel sorry for me? Why? I do not have these difficulties.  I can understand, communicate, cope with the world around me.  If you have any sympathy to spare, save it for my daughter who is struggling to make sense of her world!”  The reply to this from the lady was “No, no, you misunderstand me.  I meant you must be thinking Why Me?”  To this I then replied “Why not me?”  There was, of course, no answer to this.

This brings me to the heart of the matter.  No matter what we face in life, we all have a choice on how we handle it.  Of course we must recognise and try to rationalise what has happened, not doing so can be counter productive and can affect our long term wellbeing, but that does not mean we can have an extended stay in Wallow Town.  There are issues to face, actions to take and plans to be made.  Taking the “Why me?” route puts the brakes on moving forward and taking advantage of opportunities or possibilities which may alleviate the situation.  Taking the “Why not me?” route is an acknowledgement and (even only in part if necessary) acceptance and opens the door to co-operation and support.  All the time we stay in the “Why me?” zone we are giving others permission to collude with our inactivity and this way nothing moves forward.

So, what can we do to help ourselves?  What can I offer to help you.  Well, the following points have always helped the families I have supported, so hopefully – no matter what your situation may be – these can help you too:

  • Recognition: Yes, of course, you are not made of stone.  No-one expects you to be light-hearted or skippy happy with what has happened, so do recognise your experience whatever it may be and be kind to yourself.  Others will understand that this is your way of processing.
  • Acceptance: We cannot turn the clocks back.  Acceptance does not mean you are weak, it means that you are able to move forward and deal with what is to come.  It can  be empowering and stabilising.
  • Action: Make your own plan of action to move forward.  If other people and professionals need to be involved in your plan then make them aware of this.  Taking control of your own action plan will mean that there is less likelihood of issues falling through the net and, quite honestly, you will feel a lot better having initiated action instead of feeling anxious waiting for something to happen.
  • Reconciliation: No, not making friends or making apologies.  Reconciling the books the way an accountant would, such as:  Income (have we achieved the actions on our plan).  Expenditure (have we had to compromise to get what we need and at what cost) and Balance (do we still have outstanding debtors on our plan and will our plan balance).  Simple accounting and auditing for long term gain.
  • Result: For long term gain, we need short term success.  This will give us a result we can live with.  Success in some areas allows for more attention to be given to other areas where we feel success is slower.
  • Moving forward: Everything in life changes.  What we need today may change for tomorrow, so always have your head turned towards the future and moving forward.

Finally, whenever I have been asked why I do not question “Why me?” my answer is always the same.  I tell them that everyone will have something adverse to face during their lifetime, whether it affects them personally or a loved one, there is no escape and it is a fundamental part of being alive.  Why not me?  What makes me impervious to all that life has to offer?  Bring it on, I say!


Joyce Raw