Thursday, October 6, 2011

Get Off The Cross We Need The Wood

Had a session with my psychiatrist last night.  He agrees I am experiencing delayed grief.  My tendency to see life through rose tinted glasses and hold everything too close to my chest has not been good for me.

For starters he wants me to write about the day Clay was diagnosed with autism.  I know I have covered this in previous posts; but this time he wants me to not be the martyred mother, not edit my feelings. But really openly and honestly be transparent about the unfairness of it.

I argued with him of course.  I feel very disloyal and feel as if this is a sign of rejection.  But no, he says I am entitled to rage to the world about the unfairness and unjustness of life and what cards you are dealt with in life.  It does not mean I love my son any less; it does not mean I am a bad Mum; it just means I am finally acknowledging the grief I never let surface in the past.


In this picture Clay is about 3.  It is twelve months after 'that' day.  He is actually doing his best to look at the camera.  Eye contact not being a strong point.  He is clutching his beloved Boohbah.  He is being very brave.  I too always felt I had to be brave for his benefit.  Me wailing and grieving was not going to help him.  After all, he needed so much help, so much intervention.  So much in fact we chose to sell our house to free up funds to help with the cost of all the different therapies he needed.

I can't remember much leading up to the appointment of Diagnosis Day.  I do know we had already been to many different therapists and I was constantly excusing Clay's quirkiness which I fondly called Clayisms.  He liked to see people's feet, touch people's noses.  He sat backwards on any trike or little ride on car.  He did not speak. He still ate baby food and so much more.  Yet he was, is my beloved child.  I would die for him and if necessary kill for him.  As any parent would.

Back to that day.  I can't remember the exact date but it was in March 2004.  Ally, Clay's little sister was born on 24th February 2004 so she was brand spanking new and I was still recovering from her birth.  We lived in Mackay and had no family there.  My Mum was over 1000 km's away in Brisbane.  Warren, my darling husband and wonderful Father to our kids went to work.  We treated this day like any other.

It really should not have been a big shock for us.  Clay had accessed a feeding clinic from six months of age because he could not tolerate solids.  He had been attending Occupational Therapy for about twelve months and had also started going to the local SEDU (Special Education Development Unit) run by Education Qld.  We knew something was coming.  We had googled Autism.  Yet, we still had our head in the clouds.  Not our son, life could not be that unfair.  Our son is perfect, he is beautiful and surely he is fine.

I packed the car and back then Clay was in his car seat and Ally in her baby capsule.  I would have had to load up the pram, the nappy bag and all the associated paraphernalia you need for a baby and toddler.  Then when I got to the hospital, unload the pram, get out the kids and most likely chase Clay the whole length of the halls to get to the paediatrician's rooms.  (nothing different from what any Mum does on a daily basis when having an outing with a toddler and a new born) The only difference was that my world was about to be turned upside down and inside out.  And still I was clueless.

I can't remember the words, I can't remember how long we were there for.  I know it was not very long.  I know the diagnosis was pretty early in the appointment and then we spent the rest of the appointment discussing what next.  Again, what was said; I just can't remember.  My mind was reeling.  I can't remember much about that day.  I think going home I just went through the motions.

How could this happen to us.  What had we done to deserve this.  Was I up to the challenge.  I must have rung my husband and family.  I can't remember.  I know I never cried.  I wonder, would I be here in hospital if I had allowed myself to grieve.  If I had wailed and mourned and screamed about the unfairness of it all.  If I had perhaps, got counselling, if I had railed about the total utter crap cards I had been dealt.

It is so very hard to admit that while loving your child there are things you would wish otherwise.  So, I deal with guilt also.  How can I, while loving my child want him to be different.  How can I wish this and still be a good Mother.  It eats away at me.  It tears me apart.  And yet, I still hold it all in.  And, like my doctor said: I have a right to be angry, I have a right to feel hurt and I have a right to be disappointed.  This does not mean I love my child any less.

I now need to work on ways to move on.  I will not let this define me.  I will not let this destroy me. Instead, I will let it strengthen me.  While still, finding a way to work through my grief, allowing it to run it's course and finding a way to be done with it.

It has been seven and a half years since Clay's diagnosis.  He continues to be a source of constant joy but also a source of constant worry.  My doctor says I need to just let it be.  Let him achieve his goals in his own time.  Allow myself and my family to celebrate those goals and not demand too much.  I think I am pretty good at that.  In fact, Clay at times surpasses all my expectations.


This is my most recent snap of my beautiful children and yes he is looking into the camera.

Remember, if you want something bad enough, it can happen.

Love to you all
Laura

3 comments:

  1. very touching Laura... reading this has made me think and wonder exactly how much I allowed myself to grieve.... sure I grieved at the fact that it was official that my son had a disorder... but am not too sure on whether I have fully let myself be honest about the cards I have been dealt... or allow myself to cry at how much of a battle this journey is sometimes...I know that I try and always keep myself busy .... so not to allow for time to think... and I know that not having outside support at all means that whenever someone does come along and ask how I am or give me praise for the way I parent my children and deal with everything I have to deal with... my answer is just tears.... I think as mothers of a child with autism we feel we have no right to grieve....or say its hard.... when we know how hard it can be for our children in todays society.... thanks for your openness and raw honesty..... much love....

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  2. Dear Amie
    It is such an awful legacy we carry. We grieve but don't want to, we stay busy to avoid facing our feelings and fears.

    Please don't let it go so far as I did. See a counsellor and get some grief counselling. It is not weak to admit you need help.
    Thanks for the wonderful but raw feedback
    Laura
    xx

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