SEND: There are costs to parents too.

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 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 in 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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6 thoughts on “SEND: There are costs to parents too.

  1. I am 60 and had my 10.5 yr old since he was born, separated when he was 2, adopted him at 4, finally divorced but not been able to work, I am now nearly at the end of my savings and need to work. What with his appointments and need to be watched over nearly everything. I feel broken. I was once a working person with a husband and 4 birth kids and was doing. Dry nicely thank you. But I am now far from that. No help from s services or the ex who I was married to for 30 years. Life sucks..

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  2. I agree. I went from TV news producer and presenter on CNBC/NBC Superchannel, out-earning my husband, to suffering depression, feeling like I had completely lost a sense of who I was. I had just got an agent and planned to go back to work but, long before my eldest had a diagnosis, we knew he wasn’t like other children and couldn’t be left with others. Then his brother came along and he had medical problems so that was that. TV moves quickly and there is always another blonde to take your place, and I couldn’t do the shifts. I felt like I had swapped something I was great at for something I was crap at – being a mother – as my boys’ difficulties meant it was not as the books said it should be.
    It took a very, very long time to get it back (there was no such thing as a ‘SEND parent’ or Facebook then and really, who would choose to be one?), the stares, the ostracism by other mums, the struggles with school, the sense of failure. I did an OU social sciences course (paid for by my mum, just before she died of cancer), then a couple of novels then SNJ took off. In a way, I was lucky – as a writer, you can always take it with you if you can find an outlet, so I volunteered doing PR for the STARS charity (My younger son had reflex anoxic seizures). But I still carry the guilt of not being much of a financial contributor as the toll it has all taken on my health means I’m now disabled too.

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  3. Me too. I have a 20 year old daughter (very high IQ and late diagnosed as on the autistic spectrum, with a lifelong history of social anxiety and food allergies/sensory issues) who the system failed to identify as having any issues (i.e. mainstream educated at a grammar school where teachers simply did not recognise SEN let alone address it) so we have simply drifted. The cost has been huge. I have to give up my career and my daughter has not been able to access one as the school informally excluded her (6th form+) and the LA has fought us tooth and nail firstly against the need to assess her; secondly against the need to provide the SSEN support they had agreed; and finally against the need to support her to continue with her wish to continue with her wish to continue with her education after the year 12 mainstream placement broke down two years running. We have not only had to appeal to the SEN Tribunal but we have had to defend a LA appeal to the Upper Tribunal against the SEN Tribunal’s decision to order the LA to issue and maintain an EHC Plan. It all proved too hard for my daughter: her depression worsened and she stopped eating and was hospitalised. I wish I could say other ‘professionals’ had been supportive but they haven’t. The transition from CAMHS to adult MHS was appalling. Can’t give more details at present as the PHSO are involved but suffice it to say the criticisms against schools and LA’s also (IME) extend to health. Its a very sorry state of affairs when adults work to protect each other rather than children and young people.

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  4. Since two of my children have become unwell, my eyes have been opened to the frailties and injustice of the ‘system’. As a children’s services professional of 20 years, I have been shocked by how poorly education, health and children’s services work together to support families. I honestly had no idea that the strategy that I had helped develop was so badly implemented. It was two different worlds. I’ve experienced immense dissatisfaction with health – both paediatrician and CAMHS, with CAMHS tipping the scales on being the most incompetent service ever to grace the earth; I have been brought to tears and anger with the absolute disregard for my daughter’s education by a SENCO and year head who evidenced no skills in working with families, specialising in the blame the mum tactic; and when I realised that the person from the LA who was to sign off the EHCP was still living in SEN land and had no power to enforce CAMHS to meet it’s obligations in the plan, it just about pushed me over the edge. I do not understand why those services do not work together and recognise the parents as their most valuable asset; it’s just logic! Even when the parenting does need help, how is blaming them ever going to move things forward?
    So nearly 2 years in, on this awful journey, not least of which is due to my children being unwell and that actually worries me and exhausts me, the battle I have had with every professional has brought me to a dark place. I’m unable to be in work as often as I need to, I’ve had to pay for mental health support for my children and I’m facing a crossroads as to whether I can work anymore. I’m a single parent with very little financial support from the father of my children.
    But I’m a survivor and I will forge ahead. Despite the injustice, I know I am still the most valuable asset in helping my children and if people think I’ll give up their right to a happy childhood, they don’t know me at all.

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