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: ( currently under construction, due to go live soon)

You can also connect with her on twitter and facebook

Spectrum Sunday

pushy parents and the battle for SEND diagnosis to get support

Today I read about the recent report by GL Assessment which highlights a belief that pushy parents are getting unnecessary SEN diagnosis for issues that teachers believe can be resolved in the classroom, whilst those with genuine need are missing out.

I am one of the parents who turned to private assessments in desperation when it felt like we had no other choice. Am I to blame for other children not getting the help that they need?

Our story

My Son is high-functioning and has atypical autism, and we had no idea that he had autism until he started school (an independent school). Shortly after starting school, we were called in to discuss his behaviour. We knew there was more to it than being naughty so we decided to find answers and help.

With a 5 month wait to see a paediatrician (if you were a priority case), we knew we didn't have that much time. So we turned to private assessments. This was not because we chose to, it was because we felt like we had no other choice.

Our first private assessment helped us to understand that our Son may have autism, and allowed us to identify strategies that the school could use to help him in school however we were repeatedly told that they didn't have the capacity or resources to implement many of these strategies. We battled with the perception at school that our Son was manipulating the situation around him, knew what he was doing and chose him moments to act out. There were suggestions of lack of sleep and lack of discipline, and he was blamed for his teacher being booked off on stress leave. More incredibly the SENCO stated that she didn't get involved with autism as it was too complicated for her, and she believed it was best for parents to get an EHCP.

With little support, we had to figure out what an EHCP was and how to get it ourselves.  Once again we self-referred to professionals as we didn't know what to consider or what was important. Time was critical, as we were at risk of exclusion by the school at this point.

Our request for an EHC Needs Assessment was turned down for "lack of sustained involvement from outside agencies". We were stuck, we needed an EHCP for support but the EHC Needs Assessment was turned down because we hadn't had support. What were we to do? Further private assessments helped us gather the evidence needed, and it took us another two months to get a yes to an EHC Needs Assessment based on the strength of the various reports we had.

We were lucky to receive an EHCP later in the year, however it took two school moves  (mainstream and now special school) in less than two years for my son to find the support he needs. I don't know if I was viewed as a pushy parent, but I doubt this would have happened if I hadn't gone down the private assessment route.

It was not an easy option, and we are still slowly recovering from the battle a year and a bit later. I can't imagine any parent choosing to go through this just so they could have a label, or a get little extra help in exams.

What has been said 

So you can image how I felt when I read that what had been reported, and the media coverage did little to lift my mood.

The report findings that left me concerned:
  • [asked] why children continued to be misdiagnosed, just over half (54 per cent) said parental pressure was to blame
  • [teachers felt] some [parents] wanted a medical or psychological explanation rather than having to accept that their child had a classroom problem that could be addressed by a teacher
  • a large minority (39 per cent) thought it was because some parents wanted a label to help their child gain a competitive advantage in exams
The commentary on the findings that left me speechless:
  • It cannot be right that so many children are misdiagnosed with learning difficulties; all the more so if family pressure is the cause
  • How unforgivable then, if children with genuine need miss out because help is diverted to those who don’t really need it
and the Guardian and Independent comments that went a step further ...
  • Educators are warning that middle-class parents who know how to work the system are getting diagnoses for their children
  • Parents may think people will be a lot less judgmental of a child’s behaviour – and their parenting skills – if they know the child has a label
  • Even if there’s maybe not something actually wrong with them, a diagnosis fits them into a box which means they can get that extra help

Why I am upset by this

First is the lack of balanced reporting which made no attempt to consider why this may be happening, or give insight into the wider context of the the many challenges that parents and teachers face in trying to get support for children with SEN support needs. Where is the parents' response?

Second is the insinuation that some parents are working the system to gain an advantage for their child or find a "comforting" label to explain their child's behaviour rather than their own parenting. Has there not been enough parent blame? How many is some? One, one hundred, one thousand? By not quantifying "some", this has been made as a broad sweeping statement that makes it seem common place when the reality could be much less frequent. 

Third is the implicit accusation of professional misconduct, where children who don't need it are being diagnosed and that parents can buy this diagnosis. What is the basis for believing children have been misdiagnosed? Why are teachers questioning the professionals' diagnosis? If there is really a question of this happening, why is no one holding these professionals to account?  

Fourth is the statement that children are missing out because other parents have fought for their children to get help. How can one parent be blamed for another child not getting a diagnosis and support? What is being done to help undiagnosed children with real need to get their diagnosis when the parents aren't able to advocate as much as other parents or pay for independent reports? Is it wrong for parents to do all that they can to help their child? If there are insufficient resources to support all children with needs, what is being done to highlight the lack of resources?

I have met many parents in stressful situations after their concerns for their children been dismissed by teachers, or they have been waiting years to get a diagnosis and adequate support. Sometimes when you are battling the world, you have no choice but to become a pushy parent. If you don't push then you will lose out. 

This report feels like we are moving in the opposite direction from where we should be heading. We should not be blaming each other or creating divisions, we need an environment where educational settings, health care professionals and parents work together to understand the needs of a child and how best to support that child.

we need an environment where educational settings, health care professionals and parents work together to understand the needs of a child and how best to support that child

Other peoples views

I hope that if enough of us speak out that we might be able to get someone to follow up on the parents side to this story. To do my part in raising awareness I have started a twitter survey to get parents views, and hope to report back next week on the results along with some of the stories and views that have been shared with me.

I you have a little time, it would be great to get your input!

Share your thoughts on Facebook

And twitter

Keep Calm and Carry On Linking Sunday

two years after my son was diagnosed with autism

Two years since were were told that Eldest likely has autism, two whole years since our lives took a sharp change in direction from the one we had planned.

Whilst the first year after diagnosis was tough, the past year has seen us regain some of our family mojo. We are starting to celebrate the special moments more often than we battle through the tough times.


The biggest change last year has to be school. After a year and a half of battling, we have found a school which is able to support Eldest. No more battling for the right support, or fighting against exclusion.

Despite my initial hesitation about moving to a special school, the new school has helped him to calm down and his previous anxiety has virtually disappeared. He has gone from several behavioural incidents a week, to none in the 9 months since he started at school. That's right - not one!

STOP button. Our favourite technique introduced by the new school. When you say "Stop button", you need to stop what you are doing.  stopping all behaviour and waiting for instructions when the teacher calls out "Stop button". We are now using this at home to get Eldest to stop unwanted behaviour, and whilst we are not quite as effective as school we are getting there.

Knowing our school battles are over means that we can finally start to relax, as we don't have the constant worry of getting a phone call from the school to come in and discuss the latest behavioural incident or a potential exclusion.

This year I hope that school will be able to focus more on the academic side, as Eldest is still behind expected levels for his age despite his potential to excel.

Key Milestones

The biggest excitement of the year was seeing Eldest overcoming his resistance to writing. I still get a kick each time I see him start to draw a picture or write something down, and am so pleased that he no longer gets distressed when asked to write something out. I know it is just a matter of time before he writes his first story for us to enjoy.

Our boy has also started to enjoy reading. The joy of finding him sitting with a book reading aloud to himself is indescribable. You will often find me hiding just out of sight, listening to him reading and smiling like a Cheshire cat. I hope he continues to enjoy reading as it helps to keep him calm, unlike screens which seem to cause him to go into over-drive when he has been watching for too long.

Another big milestone was getting dry overnight. This had been a struggle for us, and we were beyond excited at being able to wave goodbye to the overnight pull-ups.

This year I am hoping that we will be able to add riding a bicycle to the list. He is almost there but still wants us to hold the bike and run behind him. I think this is just a matter of confidence, but he refuses to try without someone holding on. Thankfully we have a bike balance buddy to save our backs.

Social Skills

Social skills have always been one of the biggest challenges, and this year we have started to see Eldest make attempts to think of others.

At school he is starting to ask what other people are doing rather than insist they the play his way, and I was especially pleased to see him think of his sister in the run up to his birthday, when he suggested that she may want to invite one of her friends to his party.

We are using boardgames to encourage turn-taking. These usually last about 30 minutes before we need to abandon the game, either because he starts to try make his own rules up (to suit himself) or he gets upset because the game is not going to plan. Our aim with these games is that he learns to wait his turn and is able to lose without getting extremely upset.

As Youngest grows up, finding the balance between what Eldest & Youngest want can be a challenge. Youngest no just does what Eldest tells her to, which can be an issue for Eldest and is causing increased tension between the two as she starts to do things her own way.

I think the next year is going to be an interesting one. I hope that Eldest's social skills will continue to develop and that he will learn to start taking other people into consideration when doing various activities and games.

Emotional self-regulation

Another big challenge for Eldest is dealing with heightened emotions.

We definitely have fewer meltdowns these days, however I think that is more down to us being more aware of Eldest's triggers and managing the situation around him. This can be very tiring, and it feels like we are constantly trying to prevent things from escalating.

The biggest triggers at the moment are linked to screen time. Screens - the bain of my life!!! You could say Eldest is a "little" addicted, which means we have to control his screen time quite carefully.

Saying no to screens leads to disappointment and frustration. This is something that Eldest can't deal with well - it will often take a couple of hours for him to settle down after being told No. Too much screen time leads to over-excitement. This over excitement which has Eldest literally bouncing around the house can quickly spill over into meltdown mode. Either way we have a little boy with heightened emotions that he struggles to deal with, and we need to work hard to bring him back to a calm level.

My biggest hope for the year ahead is that Eldest will continue to learn to self-regulate his emotions, and that he will become better equipped at dealing with frustration and disappointment. I also hope that his obsession with screens will become more manageable, and that we wont be battling with him each day to limit the time he spends on them.

The Rest of the Family

On the whole we are doing ok as a family.

It feels good not being in crises mode, and both Dad & I are starting to recover from the stresses of the year before. Finding more positive moments is helping us to bond together as a family, and we are enjoying life a little bit more.

After a temporary role change in 2015, I have been able to settle back fully into work and am enjoying having something else to focus on. There are weeks when trying to cope with work and home life is tough but it is nothing like the year before when we were struggling with school and getting an EHCP .

Weekends are usually spent at home as we all need time to unwind after the week and we want to avoid any potential challenging situations which can quickly arise when we go out. We have learnt how to cope with some situations like eating out, however this takes a lot of planning and management of the situation which means that we don't do it as much as we would like.

The biggest plus this year has to be the community of support that I have found online and in local support groups - having people in similar situations to talk to has been a lifeline. As one mum said to me "We do have such drama and ups and downs but they [NT parents] don't get the same sense of community we all have"

We do have such drama and ups and downs but they don't get the same sense of community we all have

Hopefully we will be able to get out more as a family by this time next year, and we will have more positive moments to celebrate.

In Summary

All in all, it has been a good year with some moments to celebrate and others which require a bit of planning and patience. Life still requires a little more effort to get through, but we seem to be heading in the right direction.

Spectrum Sunday
Keep Calm and Carry On Linking Sunday

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