What helped me through my ordeal

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Parents often ask me how I kept going despite the setbacks I faced. Believe me, I’m no superwoman – I’ve shed so many tears and felt like I was losing my sanity on so many occasions. Here are a few things that helped me in my darkest moments.

Getting support.   You can’t do it alone – the relentless battle with school/the LA takes its toll, leaving you feeling battered and defeated.  What really helped me when I felt like giving up were:

  • Calling autism helplines.  The National Autistic Society helpline, particularly the Advocacy for Education Service, was excellent – advisors gave me clear, constructive advice and the will to carry on;
  • Talking to other parents of children on the spectrum (at workshops, seminars, local support group events).  Sharing stories with other parents going through a similar ordeal to me made me realise I was not alone and I picked up lots of useful tips and advice.

Taking control.  Try not to be intimidated by the ‘experts’ – nobody else knows your child like you do.  If you have a ‘gut feeling’ that something is wrong, don’t be put off – trust your judgement, have faith.  As educators did their best to undermine me and deny my son the support he so desperately needed, I started to gather my own evidence about my son’s crippling anxieties and suicidal feelings about school, the daily bullying and inappropriate punishments he was given (crucial information which would support my case at a later date), including:

  • My own daily record of my son’s difficulties at school and his anxieties/behaviour before/after school;
  • School documents about my son’s difficulties and staff concerns;
  • Transcripts of conversations I had with school staff and professionals working with him;
  • Letters from professionals – when my son felt suicidal, I’d take him to my GP, who later wrote a letter confirming he was an anxiety riddled boy with serious school phobia.

Knowledge is power. The more you know about SEN law and your rights, the more confident you will feel:

  • The SEN Code of Practice is a must-have – it explains procedures and your legal rights (currently being revised);
  • Autism workshops/seminars for parents – the more I attended these, the more empowered I felt;
  • One book I found really helpful was “Surviving the special educational needs system: How to be a ‘velvet bulldozer’” (Sandy Row 2005) – Sandy takes parents through the system having navigated it on behalf of four children – a truly inspiring story.

Most importantly, you need to take care of yourself. Do things to help you relax, de-stress and recharge your batteries because you won’t be able to keep going if you feel exhausted.

 

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