Pushy parents and SEN diagnosis - A question of "invisibility"

Parents often need to fight hard when their children disability is invisbile

There are many responses to the recent report by GL Assessments, and many different angles to consider it from.

Following on from my personal response to the report, I would like to share another point of view from an independent SEND training consultant. Olga has been a great support to me and many other parents I know over the years. Her insights have been invaluable and I am pleased to share some of her thoughts with you.

There are disabilities that are visible and there are disabilities that are not.

This was the key thought arising in my mind when I woke yesterday to scroll through Facebook and read the many posts and responses to the article in “The Guardian” that describes a recent teacher poll about attitudes towards parents of children with SEND.

Let me get this out of the way before I go any further, because implicit in this social media debate there appears to be a fundamental division of understanding between SEND parents and teachers that were surveyed about what constitutes “a disability.” By extension, if the disability is “invisible” teachers cannot “See” the issues. Therefore; it “cannot exist.”

Several responses within the SEND blogging community have already highlighted very eloquently the inappropriate pitch of the survey. It does beg the question, “Why conduct a survey in the first place, where respondents have no professional training to respond to the nature of the questions asked?”

Why ask questions, about the validity of clinical diagnosis (and misdiagnosis) to a group of respondents who have, in all likely hood, had zero training on:
  • The diagnostic criteria of these conditions.
  • The differential aspects and variants of each condition.
  • How it presents in boys as opposed to girls.
  • What the appropriate observational and assessment tools might be to assess.
  • How to interpret their results.
“It must be mum” couldn’t have put it better in her post The Absence of Critical Thinking

I admire this kind of post, not least because it dissects the issue so “professionally” and with objectivity. I admire this skill in objectivity; because as both a SEND parent myself and as a SEND training professional and independent advocate I know that taking the emotion out of the subject can be so very difficult for SEND parents to do. Which brings me to objectivity and “grief.”

Parents who have a child with a disability will go through a state of “grief” at some point or another in their child’s journey. It is a well- known phenomenon. Those of us who work directly with families, are tuned-in to this process. To work successfully with a family whose child is disabled, you need a high level of “soft skills” including listening, reflecting, helping to problem solve, separating issues, and validating.

So, let’s talk about “grief” and how that might be perceived as “pushy” by the “untrained eye” or perhaps “acceptance” is a better word. Because even the word “grief” is perhaps loaded with stigma. It conjures images of immense pain; of death of a loved one; of a feeling of deep void; of isolation; because no-one else appears to feel that depth of sorrow, but you.

If you have never given birth to or adopted a child who you assumed to be “ordinary” at birth, to be then hit with the realisation that he or she will never be “ordinary” and watch their daily monumental struggle because they cannot make sense of many “ordinary” things let me tell you that that is exactly how it feels. It is often a feeling of deep sorrow I see in the families I help.

It is painful, there is a void and it is isolating.

We’ve all heard of the 5 stages of “grief”. Shock- then denial- then anger- then depression until finally arriving at “acceptance.” I see Parents of children with disabilities go through these stages, albeit at a different pace. The pace of their progression through that tunnel of acceptance is influenced by many things, positively or negatively:

Knowledge, understanding of the condition/s; family support; parent physical and mental health; parent level of education; available financial resource; a network of support outside the family and lastly, access to education and professionals who are trained to reduce or manage the barriers arising from the disability.

So, let’s look at this issue more closely, because my experience as a professional that works at the intersection between parents/ schools/ professional therapies/ law is that the experience of a parent with a child who has a “visible” condition is VERY different to the experience of a parent who have a child with an “invisible” disability.

For parents with a child whose condition is “visible”, the grief process starts earlier, often at birth or early in life; sometimes in pregnancy and with that, comes a lot of professional support. I am often amazed at the difference in self- advocacy skills, resilience and self-confidence between parents of children with Down Syndrome and parents of children with an invisible neurodevelopmental condition such as “high functioning” ASD.

By the time their children enter the world of compulsory education and the challenges that come with it, the group of parents of children with a visible disability have things in place. They have developed a high level of self-advocacy skills. They are accustomed to working collaboratively with professionals.

Yes, there are still battles around scarce resource around essential aids and equipment; I but by and large, what I see, is a tremendous disparity in the level of understanding and support these families receive by professionals and teachers.

It is extremely rare for me to see a family where a parent is at a loss because the special school the child attends is blaming them for their child’s disability.

And yet I see that type of plight almost daily from parents who are floundering in a situation where they are desperately asking for help, and no one is listening.

Parents where their child is clearly at the precipice of school-refusing because the unidentified “needs” are so multiple and complex they cannot take another day in that hostile environment; I see families where teenagers have tried to take their own life, because it all got too much. I see families where the child has been given detention after detention after detention because the teacher fails to understand and accept that the child has severe difficulties with working memory, so keeps forgetting items and homework. The prevalence of mental health problems and pressures on CAMHS services are well reported in the media. I see this too at the frontline.

I do not see a system which is exacerbated by “pushy parents” I see a system which is at bursting point. And when everyone is overloaded, the finger is now being pointed at parents, who along with the disabled child happen to be the most vulnerable in the equation.

This must stop.

There has to be a fundamental shift in culture and thinking if this survey is indicative of mainstream teacher perceptions.

It begs the questions. “Where does this culture of “blame” stem from?
  • Is this a culture resulting from the pressures that OFSTED throw onto mainstream schools?
  • Are mainstream teachers so overloaded there is no room left for dealing with “extras”?
  • How are the core skills of listening, critical thinking, observing and reflecting taught in teacher training?
  • What accountability is there when mainstream teachers disregard professional advice?
  • Is the time resource given to SENCOS and the training they have had, anywhere near adequate?
  • How can mainstream teaching professionals possibly be expected to assess mainstream children with invisible disabilities when the level of training they receive is so basic?

The irony of this apparent blame culture, is that the very parents that are being accused of being “pushy” are often, in my experience the people who are very well placed to impart information to teachers and help them arrive at a solution. Why is this vital, ( free!) resource not being used?

Many parents of “invisible” disabilities I have met are so knowledgeable about their child’s condition they are deserving of an honorary degree in the subject. They are often very articulate, self-sacrificing parents who work very hard at understanding and raising their child so that they will NOT grow up to be a resource drain on the tax payer.

The internet has also drastically changed the way parents of SEND children network and learn from each other. The pooling of knowledge and resource that occurs on a daily basis is tremendous, both in quality and quantity.

I have a further burning question:

Is there a hierarchical culture within the mainstream teaching sector where it is counter-intuitive to ask parents what should happen? Are some teachers trained to think “They always should have all the answers?” “Are teachers frightened to admit they don’t have all the answers?”

I’d love to know.

Olga Hamer is an independent SEND training consultant, volunteer, advocate, illustrator and parent to a child with ASD.

You can more find out more about Olga at:
www.sen-nav.org.uk ( currently under construction, due to go live soon)

You can also connect with her on twitter and facebook

Spectrum Sunday

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