SEND: There are costs to parents too.

Next month I will start my ‘Return to Nursing Practice’ course.

This is not ‘exciting’ – I am not being turned into a carefree, responsibility-free 18 year old again.  It is 31 years since I first started as a student nurse and I worked until 4 years ago where I had a senior job in a role that I loved.  Like many in my position, I became unable to continue working due to Peter’s needs being constantly unmet by school and his resulting escalating mental health problems.  In nursing, quite rightly, when you have been away from practice for a certain period of time you need to complete a substantial amount of re-training.

In the last few months not only have I entered into the world of blogging but also the wonderful world of twitter.  It is striking how little is written about the impact on parents.  I’ll come back to the financial and career implications later, but here are some other costs:

• Witnessing needless suffering: Watching your child suffer extreme distress day after day is horrendous.  There are no words to describe it and it leaves you scarred.  Really scarred.
• Being blamed: Some liken it to gaslighting, and certainly, I felt that I was in an abusive relationship with Peter’s head teacher who seemed to have too much power and who I felt abused it at every opportunity.  Peter’s records have revealed that the head teacher campaigned to other professionals with a variety of allegations that were ‘hinted at’ but never properly documented by HT (but recorded by those HT complained to).  Others then took the lead and over the years (and despite Peter being diagnosed) there was a snowball effect of ‘itmustbemum’.  It is paralysing and suffocating and can leave you feeling totally trapped.
• Expert help from nowhere?  Unlike many parents we were lucky to have a clinical psychologist who was able to advise us, but as I have indicated before, no matter how magical their skills, they cannot protect a child that is being forced to withstand stress that is outside of their capability:  Day after day.  Week after week.  Month after month and year after year.  Unless those professionals that can help are empowered to do so they too become victims: watching the decline of the child and obstructed from helping even though they have the knowledge and skills to do so.
• Naively trusting that professionals have your child’s best interests at heart – but seeing that they chose not too leads to confusion, disillusionment and distress that is unfathomable.
• Losing your old identity.  Parents (especially Mums?) of children with additional needs stop being seen by others as real people.  As individuals with a past, a present and a future that is separate to their role as a parent.  Sally is no longer the solicitor, and wine expert – who has children, Penny is no longer the store manager who does triathlons – and has children, I am no longer the nurse leader who has a reputation for implementing cancer policy effectively, who is a passionate and effective advocate for staff and patients – who happens to be a parent.  We become ‘mum’ or ‘mother’.  Professionals are seemingly allowed to judge and criticise us relentlessly and our identity as an individual is eroded: an effective way to stamp out any confidence we have to challenge inadequate and (un)professional practice of others perhaps?

Eventually, for many of us, the final blow inflicted is when we are no longer able to work.  Any chance we had of a life outside of managing the impact that inadequate practice has on our children rapidly vanishes.  We now develop new skills of applying for benefits and repeatedly justifying our need for them.  Our isolation increases, we are unable to afford holidays and our houses (and clothes) become less presentable as we are unable to afford to fix (replace) them.

The ‘us and them’ divide is now complete.  We are no longer an equal, a professional, we are now just ‘mum’.  A much easier target and far less of a threat.  Those of us that gather ourselves together to advocate for our children are labelled ‘warrior mums’ and seem to have the equivalent of ‘hazard warning signs’ pinned to us at every transition.

The accusations that maybe it’s our stress or mental health that is the cause of our child’s (non) disability (cue eye roll) is then in danger of becoming a self-fulfilling prophecy.  I hear of even the most depressed and desperate parents that are terrified of asking their GP for help: 1) in case their difficulties are seen as being the cause of our child’s difficulties after all and 2) in case their need for them is used against them by social workers when following up on fabricated safeguarding allegations or within educational tribunal hearings.

The cost that this all has on our mental health, our physical health and our general well-being is awful.  Symptoms include those associated with trauma as well as anxiety and depression for many.

So there you have it.  It’s not exciting that I have been robbed of four years of wages, of my pension contributions and future career prospects.  I love nursing, really love it and I will enjoy working back on the ward; there is no doubt about that.  I can see that it brings fresh opportunities too and that my experiences over the last 4 years have led to me developing new skills and qualities that will make me a better nurse, colleague and manager (if I manage to climb the career ladder again).  That’s not the point though.

It really isn’t the point.

• More on the impact of parents of witnessing the effects of the trauma our children are subjected to here.
• More on blame here.
• More on when the benefits of just one professional remaining professional here and them having their hands tied here.
• More on losing identity and becoming just ‘mum’ here.
• More on safeguarding allegations here.
• More on being seen as a danger and how this follows during transitions here.
• Finally a quote on Warrior Mums from Geraldine Hills: “Failures by schools to comply with what the law demands of them can cause a situation where parents of children with disabilities are seen as “the problem”. As a result, parents lose confidence in the schools. As the system stands it often creates ‘warrior parents’”.

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