In my SEND work, I often have to discuss with parents the possibility that a diagnosis might help support their child and signpost them to professionals to manage this. Many are grateful to have the opportunity to discuss their concerns about their children. Some are in denial and refuse to consider that there might be anything ‘wrong’ with their child. But increasingly, I am meeting a third group of parents who come in and demand that their child is diagnoised and labelled.
Very often these parents describe issues, usually behavioural, with their child at home. Their descriptions are often backed by information, and self-diagnosis, from the internet, TV programmes or magazine articles. However, the issues are not always evident in school. When we respond that the child’s behaviour in school is good or at least within the range of normal, the parents often focus on tiny incidents, blowing them out of proportion, or question the observational skills and professional competence of school staff.
As SENCo, I have been subject to complaints and aggression when I don’t provide a diagnosis which I am not qualified to make, or am unable to provide evidence, because there is none, to enable diagnosis by another professional. Often these parents have already involved a range of other professionals- medical, CAMHS and social care. There are often issues when the parents misreport, misrepresent, and even on rare occasions tamper with the evidence from other professionals. They may attempt to play professionals off against each other making any kind of multi-agency working very difficult. When professionals have produced reports identifying traits of either ASD, ADHD or dyslexia, but not a definitive diagnosis, the parents want the identification of traits, often common to much of the population, turned into a diagnosis or believe that it is one. They believe that information from other professionals will immediately entitle their child to a label and extra help and/ or funding in school.
However, I am only able to work on what we see in school and its impact on the child’s learning and welfare. I am not able to provide an EHCP or statement, additional funding or Velcro a member of staff to their child in response to what they report happens at home. Application for an EHCP is part of an evidence based process, not the gift of the SENCo. With little or no evidence of an additional need in school, I cannot justify allocating additional resources to a child or applying to the local authority to provide them.
This is a small group of parents, but I am meeting them more and more frequently. Their concerns about their children are based on what they see and experience, and I don’t doubt or devalue that. I understand that children behave differently in different settings. But at times, I struggle to understand what it is that these parents want from the school.
One estranged husband told me that his ex wanted their son diagnoised with ADHD, so that she could claim DLA. This is a view I have heard from other parents and professionals. However, I doubt the amount of money, particularly given the difficulty of the paperwork, is worth the effort. Moreover, I continue to believe that very few parents regard their child merely as a potential source of cash. Even those ‘doing it for the money’ have a belief that their child is genuinely more difficult (and expensive) to bring up than a ‘normal’ child, so that they should receive additional funding to help them.
Here is a clue to what these parents want. They don’t see their child as ‘normal’. In an age when so many people judge themselves by comparison with celebrity role models, reality shows or soap operas, they lose sight of what is a ‘normal child’. They feel that they have failed, if their children don’t match up with the perfectly groomed children of celebrities presented in the media, where even their sulks are cute and well managed. The parents of a ‘non perfect’ child want an explanation- Why is my child like this?
For most there are really only two possible answers. There is something wrong with me and my parenting or there is something wrong with my child. Neither option is particularly palatable.
The former that there is something ‘wrong’ with their parenting is a concern that is shared by all reflective parents at some time or another. But for most of us, we are able to accept that we may not get everything right, but we are ‘good enough’. We are supported by my mother’s advice that ‘when you think you are a bad parent, you should go to the supermarket and watch the others.’ However, for some parents to accept that they are ‘good enough’ is not enough, because they view their child’s behaviour as so consistently poor that it is evidence that they are not good parents. There is then a question is this due to unreasonable expectations of themselves or of their child or is there another issue? If the issue is only in one setting, the home, then maybe, but not always, the issue is about their parenting.
So often the response is to suggest parenting courses. I always find this difficult. There are those parents who are always keen to learn more and enrol for everything. Usually, these are not the parents, I am signposting to these courses. For those parents, they can view the course as a reprimand or confirmation of their failure as parents or as pointless. They have tried everything! Why would this work? It is not in their home when things are really stressful. It is not about their problems with their child. So it becomes a self-fulfilling prophesy and the course has a limited impact as it is not the ‘magic wand’ parents are looking for.
In the case of a few of the parents wanting diagnosis with limited or no evidence, it is tantamount to emotional abuse; blaming the child for their own lack of parenting skills and inconsistencies. They want an excuse. To find another reason for the child’s behaviour. Something for which they do not have to take responsibility for, something inbred in the child- a diagnosis. The diagnosis then exonerates the parent from having to accept responsibility for the behaviours. It is because they have …. whatever.
For them the world of reality television and drama can provide an alternative to the perfectly groomed celebrity children. Super Nanny, Born Naughty, Babies Behaving Badly, Jeremy Kyle and the like provide them with the chance to compare their children and find common ground. There becomes almost a kudos in having a child that bad! Further, these programmes tend to provide either a cast iron excuse or ‘magic wand’ in the form of diagnosis to solve the problem. Even, where the answer is a ‘behaviour programme’, it is often presented as ‘an answer’. A single thing which will create long term change, but long term change is hard. It takes perseverance, commitment and consistency. It is difficult and frustrating. The diagnosis or programme is not a ‘magic wand’ which will change the child or the situation to do that requires more, and more effort.
Being a parent is the longest term role most of us will ever take and the one for which we receive least training. Much of what we learn about being a parent comes from our own parents. Unfortunately, they are not always good role models. Even when they are, changing circumstances can make much of their experience and values feel irrelevant, particularly when presented with a difficult child. Many parents deliberately wish to do things differently to their parents, so search for new role models in celebrities and reality television.
As a SEND trainer, I am constantly saying to staff “to see the child, not the label;” that the label tells us little. It only indicates strategies that might help us to understand and support the child. However for parents, this is different. Parents can often only see their individual child. They have fewer comparisons available and often have less access to information about different diagnoses and child development in general. For staff the label can become a barrier to understanding the individual. However, for parents struggling to make sense of the individual, it becomes the ‘holy grail’. The thing which will explain, excuse and solve the issues of parenting their ‘not normal’ child. They see anyone who will not support this as deliberately blocking and not understanding. If professionals do not share their view, they are ‘incompetent’ and lacking insight.
It is incredibly difficult to work with parents with this world view, particularly when they are being aggressive, misrepresenting what they are told, making complaints and blaming. But we need to stop and try to empathise. Most professionals are able to empathise with the parents who have a diagnosis forced upon them; be this Down’s, ASD or Cerebral Palsy, etc. We often refer to Emily Perl Kingsley’s poem about booking a holiday to Italy and finding ourselves in Holland. It is not that Holland is terrible, but it is not what we planned for and dreamed about. We recognise that parents go through a period of ‘mourning’ for the child of their dreams that they do not have.
Maybe we have to recognise that this is true for the parents who demand diagnosis too. They had their dreams of the perfect and compliant child. Their real child is not like this. Parenting is hard and demanding and children are often difficult. They are challenging and frustrating. Change is slow and requires perseverance. What these parents want is the best for their child, as they see it. The struggle for professionals is to understand and support, particularly when the parents appear to be wanting the impossible- the perfect child- as that is what they think everyone else has.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Written by Emily Perl Kingsley