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

20 comments

  1. What an amazing article. Well written, touching and insightful. As a SEND parent of 2 children, I couldn't have summed it up better myself and made me very emotional. What I love most, and what your experience and knowledge convey so clearly, is your empathy for parents but also for schools and the way the education system is currently and therefore, the impact for teachers. I hope that it also fosters some understanding between teachers and parents also.The idea that a collaborative effort can be made between schools and parents, if parents knowledge is respected, seems altogether a new concept entirely but one that I know many, many SEND parents would be ecstatic to have. 'Invisible conditions are no less hard for parents to handle and your observation regarding the societies attitudes to those disabilities is what I have also experienced and those of many others that I have spoken to too.

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    1. Thanks for writing this, Olga. Needs to be heard.

      Especially after this:

      https://www.google.co.uk/amp/www.bbc.co.uk/news/amp/39097019

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    2. Thank you for your comment. It isn't actually a new concept to regard parents as experts in their own children. This is actually supported by the statutory guidance in the SEND CoP. It saddens me to see that the legal guidance is yet to translate into practice in many cases, particularly when I read reports of this kind.

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    3. Most welcome. Thank YOU for taking the time to read this and helping to raise awareness of the issue.

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  2. An amazingly insightful analysis of the situation around SEND by someone who works with affected families, schools, practitioners, is extremely knowledgeable about the law involved and the struggles that families with children with SEND face on a daily basis. What would happen to our kids if noone "fought" for them, cared for them to obtain the support they so desperately need? And how many are not getting it as they don't get a diagnosis - falling through the system? Thankfully there are also many knowledgeable ANF well informed teachers, Heads and SENCos out there - we have been very lucky, for instance - but I know of many families who are not as lucky. Collaboration, am ongoing and incessant exchange of information, continued training for all parties involved and integrated, thoughtful teamwork between schools, parents and practitioners are the only way forward. #Respect. #TogetherWeCan.

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    1. Thank you for your comments. It is very true that sadly, if a parent is unable to advocate for their child, the child is at a direct disadvantage. Best wishes.

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  3. Great post, love the questions - I'd say a very big YES to the first one. Ofsted need to admit their part in this, and their lack of understanding of SEND. You can clearly see what is going on around you and it would help if more people, parents and teachers, could open their eyes to this. You're right about parents being a huge untapped source of help; one which is sadly often treated with suspicion :(

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    1. Thank you for your comments, Steph. I couldn't agree more.

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  4. Very good piece - highlights many of the issues with the GL Assessment Survey and subsequent report which has angered many parents of SEN children including myself.

    I am surprised the press picked up on such a non-story with such a small number of teachers participating - I presume it was voluntary and maybe some had had past issues and have directed their anger into the survey hense such skewed results... Just one theory. Another is that YouGov only had a small number of responses to the survey as most teachers took one look and realised it was totally inappropriate and unprofessional to comment on SEN children and whether they had been misdiagnosed since this was not there was not their area of expertise and they were not medically trained to diagnose or take away a diagnosis...

    The survey is opinion only on a highly emotive topic and is going to do no favours for relations between parents and teachers - who both should be working to strive for the best outcome for child - in some cases that with inevitably mean getting a diagnosis - this is often a very challenging time for parents and children and is made even harder with reports like this and daily parent blaming articles in the media.

    I cannot even believe such a awful survey has been turned into a report, its laughable and highly embarrassing to both YouGov and GL Assessments.

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    1. Thank you for your comments. I agree with you entirely that diagnosis is a very challenging time for parents and that better co-production needs to take place at all levels.

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  5. A well written post Olga, too many times, parents are blamed and not listened to. We don't claim to be experts but we do know our kids.

    It is is highly unprofessional of teachers to make the claim of misdiagnosis or take away a diagnosis. How can they discredit a medically trained professional who has spent years in their respective fields, to come to these conclusions with the lack of knowledge and experience evident in their decision making?

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    1. Thank you for your comments. Your thoughts echo those of many, including mine.

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  6. Great article so much said that I've wanted to say for so long... I'm a mother of a recently diagnosed high functioning ASD son who's been struggling for years I'm also a adult education specialist SEN tutor, and agree with just about everything you said... I took a course last year to become a SEN specialist only five other teachers in our large college joined me... it's not a trendy or incentivised qualification unlike Maths and English that attract bursarys... but it is available and could go a long way to improving the situation if all teachers where required to do intensive courses that teach them about invisible disability and SEN. Such a great article thank you...

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    1. Thank you for your comments.It is very interesting to hear the perspective of a college professional. More food for thought: Is there an "unspoken hierarchy" about the areas of the curriculum/ populations of children/YP that are seen as "trendy?"

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  7. Great article so much said that I've wanted to say for so long... I'm a mother of a recently diagnosed high functioning ASD son who's been struggling for years I'm also a adult education specialist SEN tutor, and agree with just about everything you said... I took a course last year to become a SEN specialist only five other teachers in our large college joined me... it's not a trendy or incentivised qualification unlike Maths and English that attract bursarys... but it is available and could go a long way to improving the situation if all teachers where required to have intensive courses that teach them about invisible disability and SEN. Such a great article thank you...

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  8. This is a great article and I really think very insightful on many issues. I am not entirely sure about the grief part - not that I don't think it is true but because when I am fighting to make my views about my son heard, that grief is furthest from my mind. I am an intelligent and rational person who should be trusted when it comes to my son because I know him well and I am intelligent and rational, if you see what I mean. Sometimes I think professionals think those personal feelings are always affecting our judgement, when in reality I don't think they do necessarily. Thanks for sharing such an insightful post with #SpectrumSunday

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  9. Hello Someone's mum.

    You raise a very good point. I completely agree. I am a SEND parent myself and when I am in discussions with professionals about my sons' provision, I wear a very objective hat.
    The fact that one is at any stage of the acceptance process does not mean that one's ability to think rationally and in an articulate way is clouded.

    It would be interesting to know what factors influence the degree with which one can do that really well or not at all. We all vary on a day to day in our ability to think objectively, SEND diagnosis or not. I suspect personality plays a part, but who am I to say.

    I feel that sometimes professionals and teachers are either too quick to dismiss parent views on the grounds of "grief" or disregard grief as unimportant. Like it or not, it plays a part in the work we do at the front line.

    Understanding that and respecting it, comes with working in a person-centred way. It is what it is, and it should never be exploited as a way of patronising.

    Thank you again for your comments. x

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  10. A brilliant article, I am going through the grief part and really identified with the article and it helped me by showing it to friends, family and obstructive heads! I am totally exacerbated having made the mistake of putting my son in the private sector without realising he had autism and now finding out I am caught in a void where nobody seems to be able to help me because his last private school won't help me build a case for my EHCP and his new school in the state system don't know enough about him, I only got his diagnosis yesterday but had moved him from the private sector 4 weeks ago

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    1. Good luck to you and your family. We had a similar experience, having been in private education for the primary school years - the setting was lovely and the school nurturing, kind and lovely with good teachers, good head and a great SENCo, but still - there was a lack of experience (smaller numbers, fewer pupils, less exposure to SEN etc). For us things changed for the positive when we went from private to state for the sheer reason of there being more experience and there being *some* resources that can be shared easier between the children. It was also very helpful that by then our child noticed that she wasn't the only one with "difficulties", which in her primary setting certainly was the case - a big downer on any young person. We now get a lot of support (but we are very lucky where we are, which seems to be exceptional, sadly) but that took a lot to put into place and a lot of fighting with the Local Authority. I am shocked and sorry to hear your last private school wouldn't support you with the EHCP. Sadly an experience that is shared by many parents, obviously! Have you considered notifying the Independent Schools Inspectorate, after following the complaints procedure? This "kind of thing" needs to be out there and visible - the only way forward not only for our own kids' best, but for all kids. Best wishes and stay strong!

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    2. Hello " unknown", Thank you for your comments. I am very glad my piece has helped you in some way by giving you something to share with family and other people. I share your frustrations regarding transitioning between settings. It is a commonly known fact that parents have to tell their story over and over again. I wish you all the best in your journey and hope you can secure the support your child needs. Olga x

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